a few single words (although this percentage may be decreasing due to the positive effects of early identification and intervention). Little is known about the communication skills of nonverbal individuals with ASD because research has focused on verbal individuals.

Those individuals with ASD who do develop speech are often significantly delayed and do not speak until well into their preschool years. High-functioning individuals with ASD may have IQs in the normal range and appear precocious in their vocabulary size and ability to speak in detail on certain topics. Despite these strengths, this population continues to struggle with the comprehension and production of social and non-literal communication.

Several characteristics have been linked to better communicative outcomes. For example, children with ASD who produce and imitate words, exhibit pretend play with objects, communicate with gestures, and show evidence of joint attention have greater rates of vocabulary growth and overall language skills. Negative prognostic indicators include a regression in language skills after a period of development and severe receptive language impairment. Children with lower IQs also tend to have poorer

and severe receptive language impairment. Children with lower IQs also tend to have poorer communicative functioning. Even for individuals with high cognitive and language abilities who attend college and are able to live independently, ASD is a lifelong disability that affects social communication and functioning.

Clinical Expression and Pathophysiology Early Communication Development Communication is a broad term that encompasses numerous modes of sending and receiving messages, including gestures, body language, facial expressions, language, and speech. Typically developing children exhibit social communicative behaviors beginning in infancy. For example, they turn toward human voices, are fascinated by faces, smile to hold an adult’s attention, vocalize, and demonstrate joint attention (e.g., paying

faces, smile to hold an adult’s attention, vocalize, and demonstrate joint attention (e.g., paying attention to the same object as another person). In the first year of life, typically developing infants express a range of communicative intents, such as requesting, greeting, and protesting. For individuals with ASD, communication deficits are apparent almost from birth. One of the first signs of ASD is a lack of responsiveness to social interactions. For example, infants later diagnosed with

ASD is a lack of responsiveness to social interactions. For example, infants later diagnosed with ASD were described by their parents as uninterested in human voices or faces. They rarely smiled at others, vocalized in a communicative manner, or engaged in social games such as “peekaboo.” In addition, 1-year-olds who were later diagnosed with ASD exhibited a lack of joint attentional behavior and paid less attention to people in their environment. The communicative intents of children with ASD

paid less attention to people in their environment. The communicative intents of children with ASD are primarily to regulate their environment (e.g., getting others to do things for them) rather than for social purposes. They may exhibit unusual gestures, such as pulling an adult’s hand toward a desired object (rather than pointing at the object or verbally requesting it). Other symptoms of communicative deficits include delayed development of pointing gestures, a lack of typical imitation

deficits include delayed development of pointing gestures, a lack of typical imitation skills, and deficits in pretend and imaginative play. In the second year of life, the receptive language abilities of children with ASD are depressed relative to their expressive abilities. The gap tends to narrow over time, with receptive and expressive language abilities becoming more similar by ages 3–4. Parents of children with ASD report becoming seriously concerned about their children’s development

Parents of children with ASD report becoming seriously concerned about their children’s development during the toddler years, particularly due to their children’s receptive and expressive language delays. Children with ASD are generally late to begin talking and develop speech and language at a slower rate than typical children. When they do speak, children with ASD are less spontaneous in their communication, and verbal expression is sparse. They also exhibit deficits in social communication,

communication, and verbal expression is sparse. They also exhibit deficits in social communication, including following politeness rules, turn taking, and engaging in conversation.

Later Language, Speech, and Communicative Development Language consists of three primary domains: form, content, and use. Form involves the structure of language (i.e., phonology, syntax, morphology), content involves the meaning of language (i.e., semantics, vocabulary), and use refers to the social use of language (e.g., pragmatics). Effective communication involves the interaction of these three domains. For example, language produced by typical individuals is most often syntactically

three domains. For example, language produced by typical individuals is most often syntactically correct, meaningful, and socially appropriate. In addition, effective communicators can decode other’s communication in terms of its form, content, and use. In individuals with ASD, the domains of language can be dissociated, negatively impacting communication. Specially, the form of language may be preserved (e.g., syntax, morphology, phonology), but the meaning, and especially social use of

be preserved (e.g., syntax, morphology, phonology), but the meaning, and especially social use of language, is impaired. More details on the language, speech, and communication characteristics of individuals are included below.

Language Form (Phonology, Morphology, Syntax) The language form of individuals with ASD who communicate verbally is relatively unimpaired compared to the language domains of content and use. In general, development of language form in children with ASD follows the same sequence as for typically developing children. Syntactic errors that are observed seem to be related to semantic or pragmatic difficulties. In general, the development of language form is commensurate with nonverbal mental age,

In general, the development of language form is commensurate with nonverbal mental age, although a more restricted range of syntactic constructions may be produced. A subgroup of children with ASD may exhibit grammatical deficits similar to children with specific language impairment. This subgroup of children is likely to omit certain grammatical morphemes such as articles, auxiliary and copula verbs, and verb tense markers (e.g., past tense, third person singular).

Language Content (Vocabulary, Semantics) Language content involves the rules for relating words to meaning. Individuals with ASD exhibit both strengths and impairments in this language domain. For example, research suggests that overall vocabulary knowledge may be a relative strength in individuals in autism spectrum disorders (ASD). In addition, children with ASD use semantic groupings (i.e., word relationships) in typical ways for categorizing and retrieving words. Despite these strengths,

word relationships) in typical ways for categorizing and retrieving words. Despite these strengths, notable deficits and unusual characteristics are apparent. For example, the acquisition of words that refer to mental state or emotional concepts may be especially impaired. Individuals with ASD may have difficulty generalizing the meanings of words to new contexts (e.g., understanding that the word “dog” can refer to many animals, not just the family pet). In addition, they often have difficulty

“dog” can refer to many animals, not just the family pet). In addition, they often have difficulty comprehending vocabulary in nonliteral language (e.g., slang, figures of speech, proverbs, metaphors).

Individuals with ASD may produce speech that appears to be irrelevant to the current communicative context. These utterances are referred to as idiosyncratic or metaphorical language. For example, Kanner (1946) described a child with ASD who would yell, “Don’t throw the dog off the balcony!” whenever he was about to throw something. His parents reported that several years earlier, they had been staying in a hotel with a balcony and warned the child not to throw his stuffed toy dog over the

staying in a hotel with a balcony and warned the child not to throw his stuffed toy dog over the railing. Kanner emphasized that this type of utterance was not irrelevant or meaningless. Rather, individuals with ASD attach unique meanings to these “figures of speech” based on specific past experiences.

Language Use (Pragmatics, Social Use of Language) The social use of language is particularly impaired in individuals with ASD, including for individuals with IQs in the normal range. Deficits in social communication are evident almost from birth, as children with ASD are less responsive to voices and faces. Social skills are learned and applied in transactional contexts, that is, during interactions between communication partners. The deficits in social communication in individuals with ASD

between communication partners. The deficits in social communication in individuals with ASD result in less social experience, contributing to impaired development and learning. For children who develop verbal language, the speech acts they do exhibit are primarily for regulating their environment and the behaviors of others, rather than for social purposes. Later in development, engaging in conversation appears to be especially difficult. Deficits in eye gaze, intonation, topic maintenance,

appears to be especially difficult. Deficits in eye gaze, intonation, topic maintenance, understanding the communicative intent of others, and providing the appropriate amount of information are apparent. In general, individuals with ASD exhibit impairments participating in communicative interactions that involve joint reference or shared topics and perspectives.

Speech Among individuals with ASD who speak, articulation skills are a relative strength and are generally commensurate with mental age, although there may be a higher incidence of residual speech distortion errors on sounds such as /r/, /l/, and /s/ in adults. Despite strengths in speech sound development, paralinguistic aspects of speech (e.g., intonation, prosody) and vocal quality may be atypical, causing communication difficulties. For example, prosody and intonation may be monotonous,

causing communication difficulties. For example, prosody and intonation may be monotonous, inappropriate, or overly dramatic. In addition to expressive deficits, individuals with ASD may have difficulty interpreting the prosody and intonation of others leading to misinterpretation of sarcasm, etc.

Echolalia Echolalia is the repetition, with similar intonation, of words or phrases spoken by another person. Echolalia can be immediate (e.g., a child repeats, “Are you hungry?” when an adult asks him that question) or delayed (e.g., a child says, “You look sleepy,” to indicate that it is bedtime). Echolalia was once considered to be aberrant, undesirable behavior. Now it is recognized as serving various communicative functions. Echolalia is more common in children with less language ability

various communicative functions. Echolalia is more common in children with less language ability and tends to decline as language develops. Other populations of children, including typical children, also produce echolalic utterances, although not to the extent observed in children with ASD.

Pronoun Reversal It has frequently been noted that children with ASD appear to reverse the pronouns in their utterances. For example, they may say, “Pick you up!” instead of, “Pick me up!” These errors are thought to be a result of echolalia.

Evaluation and Differential Diagnosis As stated earlier, impairments in communication, particularly for social purposes, are core features of ASD. Therefore, all individuals with ASD will have communication needs, although they will vary depending on the age, level of functioning, and individual characteristics of each person. For very young children, assessment will include evaluation of preverbal communication abilities, including gestures, eye gaze, joint attention, vocalizations,

of preverbal communication abilities, including gestures, eye gaze, joint attention, vocalizations, responsiveness to communication, and communicative functions. Observations during play or activities of daily living are important for gaining information about children’s communicative behavior and their caregivers’ interactional style. The use of checklists while observing the child in naturalistic interactions is common and may be the only feasible method of assessment for many children with

interactions is common and may be the only feasible method of assessment for many children with ASD who have difficulty participating in structured test formats (see Paul and Norbury 2012).

A variety of parent report/interview assessment tools are available, including the Receptive-Expressive Emergent Language Test, Third Edition (REEL-3; Bzoch et al. 2003) and the Vineland Adaptive Behavior Scales, Third Edition (Vineland-3; Sparrow et al. 2016). Other assessment tools include direct observation of the child and may include more structured interactions or elicitation of particular behaviors. Examples include the Communication and Symbolic Behavior and Play Scales-DP (CSBS;

behaviors. Examples include the Communication and Symbolic Behavior and Play Scales-DP (CSBS; Wetherby and Prizant 2003), the Peabody Picture Vocabulary Test, Fourth Edition (PPVT-5; Dunn 2019), and the Preschool Language Scale, Fifth Edition (PLS-5; Zimmerman et al. 2011).

In verbal children, language samples may be collected for assessing the expression and use of language in naturalistic settings. Specific areas to assess include responsiveness to speech, mean length of utterance (a measure of syntactic development), word use, echolalia, pronoun use, and pragmatics. Pragmatic analysis may include the range of communicative functions (e.g., directing others, reasoning, empathizing), discourse management, register variation (e.g., politeness), presupposition

empathizing), discourse management, register variation (e.g., politeness), presupposition (e.g., providing enough background information), and manner of communication.

For individuals with ASD who have higher cognitive and language abilities, and who can participate in formal testing situations, a variety of standardized language assessments are available (see Paul and Norbury 2012). Assessments that focus on pragmatic language or verbal reasoning may be the most useful in identifying core deficits. It is important to supplement standardized testing with informal observations within a variety of naturalistic contexts in order to capture deficits in social

observations within a variety of naturalistic contexts in order to capture deficits in social communication.

For individuals with ASD who are nonverbal, it is important to assess the various ways that they do communicate. In addition, their ability to use augmentative and alternative communication (AAC) may also be evaluated.

Speech can be assessed through procedures common to the evaluation of any client with a suspected speech sound disorder, depending on the ability of the individual with ASD to participate in a standardized assessment. Common tests include the Arizona Articulation Proficiency Scale, Fourth Edition (Arizona-4; Fudala and Stegall 2017) and the Goldman-Fristoe Test of Articulation 3 (GFTA-3; Goldman and Fristoe 2015). Also, speech can be evaluated through more naturalistic sampling procedures

and Fristoe 2015). Also, speech can be evaluated through more naturalistic sampling procedures (e.g., recording an inventory of a client’s phonetic repertoire during spontaneous speech).

Treatment For individuals with ASD, research has demonstrated that a range of approaches are effective for promoting communication abilities (cf. ASHA 2017). Common approaches range from naturalistic (e.g., Floor Time, Greenspan et al. 1998) to highly structured, behavioral interventions (e.g., Lovaas et al. 1989). The incorporation of peers as models and/or trainers is also common. According to the National Research Council (2001), educational interventions for individuals with ASD should

to the National Research Council (2001), educational interventions for individuals with ASD should begin as early as possible, programming should be intensive with repeated and planned teaching opportunities, teacher-student ratios should be low, mechanisms for ongoing assessment and program evaluation should be in place, and family involvement and training is important.

In addition, intervention for individuals with ASD should include spontaneous and functional communication, social skills, play skills, peer interactions, generalization of skills to natural contexts, mechanisms for addressing challenging behaviors, and promoting functional academic skills when appropriate.

For young children in the beginning stages of language development, the goals of intervention include rewarding efforts for communication and speech, expanding vocabulary and communicative functions, encouraging multiword utterances, expanding sentence types, developing emergent literacy, teaching functional use of imitation, and capitalizing on memorized forms. Various evidence-based approaches to facilitating language may be implemented, including pre-linguistic milieu teaching, focused

to facilitating language may be implemented, including pre-linguistic milieu teaching, focused stimulation, and conversational recasting. In addition, approaches that focus on parent training, such as It Takes Two to Talk, More Than Words or Talkability (developed by The Hanen Centre), have been shown to be effective.

For nonverbal individuals with ASD, the use of augmentative and alternative communication (AAC) strategies is common for facilitating communication. AAC approaches include sign language, Picture Exchange Communication System (PECS), communication boards, and voice output devices. For individuals who are literate, written language can be an effective means of communication and can be used for compensatory purposes (e.g., using a script or communication checklist for functioning within various

purposes (e.g., using a script or communication checklist for functioning within various situations). For example, Social Stories (Gray 1993) employ a story format using visual materials to improve an individual with ASD’s social understanding of various situations. Technology (e.g., texting, social networking) may assist individuals with ASD in social communication without the stress of face-to-face interactions. Comprehension monitoring strategies for older individuals with ASD with higher

interactions. Comprehension monitoring strategies for older individuals with ASD with higher cognitive and language abilities (e.g., checklists) may also be effective.

In general, intervention for individuals with ASD needs to address core deficits in communication and social skills.
 Speech-Language Pathologist (SLP) Synonyms SLP (acronym for speech-language pathologist); Speech clinician (not preferred title); Speech pathologist (not preferred title); Speech teacher (not preferred title); Speech therapist (not preferred title); Speech-language clinician (not preferred title); Speech-language therapist (not preferred title)

Definition The American Speech-Language-Hearing Association (ASHA) is the national professional, scientific, and credentialing association for 211,000 members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; and audiology and speech-language pathology support personnel. According to ASHA, speech-language pathologists are the professionals responsible for the diagnosis, prognosis, prescription, and treatment of speech, language (spoken

responsible for the diagnosis, prognosis, prescription, and treatment of speech, language (spoken and written), cognitive communication, social communication, and swallowing disorders. Working within the full range of human communication and its disorders, speech-language pathologists evaluate and treat individuals of all ages who have difficulty speaking, understanding, reading, writing, or swallowing. Individuals with autism typically present with communication disorders, including delayed

Individuals with autism typically present with communication disorders, including delayed speech and language as well as social communication disorders. Speech-language pathologists are often the first professionals to identify that a child has autism. Speech-language pathologists screen, assess, diagnose, and provide intervention services for children and adults with autism. Speech-language pathologists may work independently or as members of a team.

In addition, speech-language pathologists may: *   Train future professionals at colleges and universities *   Manage agencies, clinics, or private practices *   Engage in research to enhance knowledge about human communication processes *   Develop new methods and equipment to evaluate problems *   Establish more effective treatments *   Investigate behavioral patterns  Minimal criteria to become a speech-language pathologist include: *   Master’s, doctoral, or other recognized

to become a speech-language pathologist include: *   Master’s, doctoral, or other recognized post-baccalaureate degree. *   All graduate coursework and graduate clinical experience required in speech-language pathology must have been initiated and completed in a program accredited by the Council on Academic Accreditation in Audiology and Speech-Language Pathology (CAA) or in a program with CAA candidacy status.

*   Successful passing of a national examination in speech-language pathology. *   Completion of a clinical fellowship after completion of academic course work and clinical practicum – the fellowship consists of at least 36 weeks and 1,260 hours, which can be completed full-time or part-time.

Demonstration of continued professional development is mandated for maintenance of the CCC-SLP. Where applicable, speech-language pathologists hold other required credentials (e.g., state licensure, teaching certification).

Sports Definition Sports are physical activities that usually require exertion, effort, and skill. They can be individual or team oriented and require athletic ability. Many sports are competitive in nature where one individual or team attempts to beat another in a game or in the achievement of a goal. Sports can be played both indoors and outdoors.

Historical Background The inclusion of individuals with autism spectrum disorders in the USA in sports can be traced directly to the creation of the Special Olympics. Eunice Kennedy Shriver was the founder of the Special Olympics which started as a summer day camp program for children with intellectual disabilities in her own backyard in 1962. In 1968, the first international Special Olympics were held at Soldier Field in Chicago, IL, with athletes from 26 states and Canada competing in track

held at Soldier Field in Chicago, IL, with athletes from 26 states and Canada competing in track and field and swimming events. Over the past 40 years, the organization has grown to a global movement. It now includes both summer and winter Olympic Games and involves over 3 million athletes in 180 countries (Special Olympics 2011).

A second origin of the inclusion of individuals with autism in sports can be traced back to educational law. In 1975, the Education for All Handicapped Children Act, more commonly referred as P.L. 94-142, made education a right for all children with disabilities. Children with disabilities could no longer be denied an education. It was incumbent upon the local education agency or school district to provide a free and appropriate public education (FAPE) to all children with disabilities. Along

to provide a free and appropriate public education (FAPE) to all children with disabilities. Along with the legal concept of FAPE was the concept of mainstreaming. It was not sufficient for school districts to simply educate students with disabilities separately from nondisabled students. School districts were required to “mainstream” students for an optimal time period that was individualized to the particular student. Physical education classes along with art, lunch, recess, and some academic

the particular student. Physical education classes along with art, lunch, recess, and some academic subjects were written into Individualized Education Plans (IEPs) of students as areas in the curriculum where students with disabilities were mainstreamed or educated side by side with their nondisabled peers.

This landmark legislation also included the concept of ancillary services, i.e., services provided to the student that were not directly educational in nature but helped to support the student in reaching his or her educational goals as a part of his or her IEP. Physical therapy, occupational therapy, and adaptive physical education were some of those ancillary services that helped individuals with autism participate in sports not only in the public school systems but eventually in the greater

autism participate in sports not only in the public school systems but eventually in the greater community as well. P.L. 94-142 was subsequently reauthorized as the Individuals with Disabilities Act (IDEA) and reaffirmed the importance of educating students with disabilities side by side with their nondisabled peers, and the concept of mainstreaming evolved into the concept of inclusion. Physical education classes were one of the primary parts of the curriculum where inclusion was written into

education classes were one of the primary parts of the curriculum where inclusion was written into a student’s IEP. Under IDEA, physical therapy and adaptive physical education were solidified as ancillary services to support students with autism in reaching their IEP goal and helped pave the way to including individuals with autism in sports.

A tertiary influence on the inclusion of individuals with autism in sports needs to be credited to individuals with physical disabilities. In fact, the Paralympics movement predates Special Olympics and the passage of legislation in the USA promoting access for people with disabilities. “In 1948, Sir Ludwig Guttmann organized a sports competition involving World War II veterans with a spinal cord injury in Stoke Mandeville, England. Four years later, competitors from the Netherlands joined the

injury in Stoke Mandeville, England. Four years later, competitors from the Netherlands joined the games and an international movement was born. Olympic style games for athletes with a disability were organized for the first time in Rome in 1960, now called Paralympics. In Toronto in 1976, other disability groups were added and the idea of merging together different disability groups for international sport competitions was born. In the same year, the first Paralympic Winter Games took place in

sport competitions was born. In the same year, the first Paralympic Winter Games took place in Sweden” (International Paralympic Committee 2011).

Disabled veterans and other groups of individuals with physical disabilities fought for access to services and the basic right to not be denied physical access. These groups fought for the passage of the Vocational Rehabilitation Act of 1975 including Section 504 which forbade public entities which received federal funding from denying the benefits of the services of the institution solely based upon a person’s disability. In 1990, the act was reauthorized and renamed as the Americans with

upon a person’s disability. In 1990, the act was reauthorized and renamed as the Americans with Disabilities Act (ADA). These movements contributed to the rise of adapted physical activities where the sports or the equipment were modified so that individuals with physical disabilities could participate in sports. Modifying the social rules of some team sports for individuals on the autism spectrum, therefore, was made easier by these previous modifications. The importance of these movements

therefore, was made easier by these previous modifications. The importance of these movements changing the culture from exclusion to inclusion of people with different abilities cannot be underestimated when considering the inclusion of people with autism in sports.

Current Knowledge It is imperative that individuals with ASDs develop lifelong habits that incorporate fitness into their daily routine. Sports can be a part of that fitness regime. The USA is faced with an obesity epidemic with over two-thirds of Americans being labeled as overweight or obese (Center for Disease Control [CDC] 2010). Sedentary lifestyles and diet are major contributors to obesity. The sequelae of obesity are serious including heart disease, diabetes, and certain forms of

The sequelae of obesity are serious including heart disease, diabetes, and certain forms of cancer (CDC 2010; Rundle et al. 2010). Additionally, obese individuals suffer a lowered quality of life and are actively discriminated against (CDC 2010). For children, being overweight puts them at greater risk for being the victim of bullying and increased risk of suicidality (CDC 2011a). Individuals who are obese also suffer from a shortened lifespan. The average American will live 77.9 years (CDC

who are obese also suffer from a shortened lifespan. The average American will live 77.9 years (CDC 2011b). Those who are labeled obese are expected to decrease not only their own life expectancy but that of the US population as a whole (Steward et al. 2009). However, a positive relationship exists between exercise and longevity. Individuals who exercise regularly have reduced mortality from all causes (Blair and Brodney 1999; Paffenbarger et al. 1986). For individuals on the autism spectrum,

causes (Blair and Brodney 1999; Paffenbarger et al. 1986). For individuals on the autism spectrum, regular moderate to vigorous exercise is associated with increased attention span, a decrease in stereotypies (Elliott et al. 1994), and a decrease in the use of psychotropic medications. Participation in sports is one way for individuals with ASDs to exercise regularly.

Individuals on the autism spectrum are at increased risk for developing obesity. One national health study of children found that children with an ASD were 42% more likely to be labeled obese than children without an ASD (Curtin et al. 2010). In fact, obesity is a well-recognized issue among people with developmental disabilities. A number of factors contribute to individuals with ASDs being more vulnerable to obesity. First, many individuals on the spectrum take medications to treat comorbid

vulnerable to obesity. First, many individuals on the spectrum take medications to treat comorbid psychiatric and behavioral issues, which have either increased appetite or weight gain as a side effect. Second, some individuals on the spectrum have very restrictive self-imposed diets that are high in fat and have little nutritional value. In fact, anecdotal stories of individuals with ASDs eating only “white foods” such as breads and plain pasta suggest that they have a diet replete with

eating only “white foods” such as breads and plain pasta suggest that they have a diet replete with carbohydrates that are associated with weight gain (VanBergeijk 2009). Third, some people with ASDs have both coordination problems and problems with proprioception (Weimer et al. 2001) or the ability to know where one’s own body is in space. Many sports require good eye-hand coordination, the ability to engage in multichanneling (Lawson 2001), a good sense of where one’s body is in space, and

to engage in multichanneling (Lawson 2001), a good sense of where one’s body is in space, and the ability to track a high-speed object and then perform another task in response (e.g., following a baseball with one’s eye after it leaves the pitcher’s hand and then responding by swinging a baseball bat to hit the approaching ball). The motor coordination nature of many sports conflicts directly with the individual on the spectrum’s disability, thereby discouraging them from participating. Fourth,

the individual on the spectrum’s disability, thereby discouraging them from participating. Fourth, the social nature of many team sports also discourages participation. Team sports require team members to use both verbal and nonverbal communication where the intent is not always explicit. For example, a person with an ASD would have to be able to discern the intent of a team member in order to catch a behind-the-back pass or an “alley-oop” in a game of basketball. The person would also have to

a behind-the-back pass or an “alley-oop” in a game of basketball. The person would also have to be flexible and not be too literal in their interpretation of rules of a game in order to be successful and would have to understand concepts like “stealing a base” as being a part of the game and not view it as cheating. The social stressors of team sports may discourage adults with ASDs from engaging in sports and benefiting from exercise. Again, a lack of regular exercise is associated with

in sports and benefiting from exercise. Again, a lack of regular exercise is associated with obesity, diabetes, orthopedic problems, loss of bone density, and heart disease (Pangrazi et al. 2007).

Individual sports may be the best possible solution to the dilemma of the need to exercise through sports. Persons on the autism spectrum could even participate in individual events as a part of a team (e.g., running track and cross country, long jump, or swimming). It would be important to avoid more complex social interactions during these events such as relay races where the stress of attempting to figure out when one is supposed to start one’s leg of a relay can be highly contextualized

to figure out when one is supposed to start one’s leg of a relay can be highly contextualized and requires the reading nonverbal communication.

Swimming has a plethora of benefits as a sport. It is a sport that has low impact upon the joints, and the probability of injury is minimal. Consequently, it is a sport that one can participate in throughout the lifespan. However, for individuals on the autism spectrum, there are additional benefits. For children on the autism spectrum, the number one cause of deaths is accidents. The most frequent accident is drowning followed closely by automobile accidents (Gillberg et al. 2010; Shavelle et

accident is drowning followed closely by automobile accidents (Gillberg et al. 2010; Shavelle et al. 2001). By engaging in swimming lessons, individuals on the autism spectrum not only engage in exercise, but they also will learn important survival skills including “drown proofing.” The American Red Cross and YMCAs offer swimming lessons including those adapted for individuals on the spectrum.

As noted previously, many individuals on the spectrum have issues with coordination. Bilateral coordination is particularly poor often with individuals having extreme difficulty doing motions or actions across their bodies. They frequently have a history of not crawling as infants. Crawling is a complex motor action that involves using alternative halves of the body simultaneously. As infants, this promotes bilateral integration of the brain. In swimming, the crawl (freestyle) or backstroke is

promotes bilateral integration of the brain. In swimming, the crawl (freestyle) or backstroke is one of the few motions that older individuals on the spectrum use alternating halves of the body. While swimming these strokes, the right hand works simultaneously with the left leg, and then the left hand conducts a stroke in coordination with the right leg. This may promote bilateral integration of the brain and improve coordination. The cardiovascular benefits of swimming are well documented.

Walking is an activity that is available to most individuals on the autism spectrum. It requires very little in terms of equipment or training. A sedentary person walks between 1,000 and 3,000 steps a day (www.walkingsite.com). The CDC recommends walking 10,000 steps a day or roughly a little less than 5 miles a day (Besser and Dannenberg 2005). Walking 10,000 steps a day is associated with better cardiac health, reduced stress, better moods, reduced risk of diabetes, lower blood pressure, and

cardiac health, reduced stress, better moods, reduced risk of diabetes, lower blood pressure, and improvements in sleep quality (VanBergeijk 2009).

Before starting a pedometer program with individuals on the autism spectrum, an assessment of their skills should be conducted. This includes their knowledge of and ability to implement pedestrian and personal safety. Not only should crossing the street safely be taught, assessed, and reviewed but also the importance of walking with a buddy and not using portable MP3 players set so loudly that they cannot hear oncoming traffic and other dangers. Part of the discussion should also include

they cannot hear oncoming traffic and other dangers. Part of the discussion should also include wearing bright reflective clothing and not wearing hoods that might block peripheral vision. Special care and instruction should be taken around daylight saving time. In the weeks following the change to daylight saving time in the fall, dusk is the most dangerous time for pedestrians. More pedestrians are struck and killed by automobiles at this time than any other time of the year. When selecting a

are struck and killed by automobiles at this time than any other time of the year. When selecting a pedometer, simplicity is the best guide. The more features a pedometer has, the higher the cost will be. More importantly, the more buttons a pedometer has, the more likely an individual on the spectrum will accidently reset the device causing possible frustration which can lead to him or her giving up the exercise activity. A simple pedometer with a single reset button and a protective cover is

up the exercise activity. A simple pedometer with a single reset button and a protective cover is the best option. The device should also have a clip to attach the device to one’s belt or waistband and an alligator clip with a tether to avoid losing the device. Some newer-generation MP3 players have pedometers built in as an additional feature to the primary function as a music player.

The pedometers can also be used in combination with persons on the autism spectrums’ interest in video games and other pieces of exercise equipment. Wii™games and Wii Fit™as well as Dance, Dance, Revolution™can be used in combination with the pedometers to make exercise fun and engaging. Pedometers can also be used in conjunction with treadmills. They are less effective with elliptical machines and exercise bikes because of the nature of the motion and the manner in which pedometer record

and exercise bikes because of the nature of the motion and the manner in which pedometer record movement.

Setting up an incentive and monitoring program will be critical to helping instituting a pedometer program and incorporating walking into a healthy lifestyle. Using behavior modification, individuals should be rewarded for wearing their pedometers and for reaching distance milestones. Graphing the accomplishments and publicly displaying their achievements can instill a healthy sense of competition among participants. Translating the number of steps into mileage and reaching certain well-known

among participants. Translating the number of steps into mileage and reaching certain well-known geographic landmarks can spur the participants on. Frequent award ceremonies or check-ins are imperative in getting the individuals to incorporate the new behavior into their daily behavior. Incentives should be of interest to the participants, and they should be involved in their selection and the setting of the goals to earn the incentive. If possible, the incentives should also be reinforcing of

of the goals to earn the incentive. If possible, the incentives should also be reinforcing of the activity (e.g., “Million Step Club Member” t-shirts or baseball hats). Challenges and competitions can be issued between subgroups or teams or participants and staff members.

Hiking and backpacking are a natural outgrowth of walking as a form of exercise. Walking in nature can be a great stress reliever among the peace and quiet of the woods (Rudy 2009) and is considered a perfect sport for children on the autism spectrum (Marinac 2010). The planning of a hike should have a goal of the hiker being able to survive 72 h in the woods in the event he or she becomes lost. Seventy-two hours are the average length of time lost hikers are found by search and rescue teams.

Seventy-two hours are the average length of time lost hikers are found by search and rescue teams. Three-quarters of lost hikers requiring search and rescue were simply conducting day hikes with no intention of spending an overnight in the wilderness. Having plenty of water as well as means of extracting and purifying water from natural sources is an essential part of prehike planning. Trail maps, a compass, fire making, and signaling gear are also essential. Orienteering skills should be

maps, a compass, fire making, and signaling gear are also essential. Orienteering skills should be taught to the individual on the autism spectrum in order for them to be able to navigate and feel a sense of control when in the woods. Hiking can be done as an individual activity, or there are many hiking and conservation groups an individual with an ASD can join where organized trips are planned for the group. If an individual on the spectrum enjoys the outdoors, then kayaking, canoeing, and

for the group. If an individual on the spectrum enjoys the outdoors, then kayaking, canoeing, and camping are other recreational activities worth investigating.

Traditional gym memberships are also an option for individuals on the autism spectrum who are interested in maintaining their physical fitness. Many offer running tracks, swimming pools, weight rooms, and organized fitness classes such as yoga, spinning, and cardio classes. For persons with ASDs, it will be important to review social etiquette rules in a gym such as comportment in the locker room, appropriate attire for the various areas of the workout facility, the importance of wiping down

appropriate attire for the various areas of the workout facility, the importance of wiping down the equipment after use, turn taking with the exercise equipment, etc. For those individuals with ASDs who find routine important, gym facilities are excellent environments where they can establish and maintain an exercise routine. Newer-generation gym equipment even combines the use of electronics and computers. Not only can the user watch TV, listen to music, and monitor their speed and heart

and computers. Not only can the user watch TV, listen to music, and monitor their speed and heart rates, but they can also play video games as a part of their exercise routine. Some brands of exercise bikes (both upright and recumbent models) have a video screen where they chase a yellow jersey rider and experience riding in a peloton on a course that the rider selects. Depending on the type of course the rider selects, he or she might be rewarded by seeing a reclusive Yeti or Bigfoot character

the rider selects, he or she might be rewarded by seeing a reclusive Yeti or Bigfoot character as a part of the game. With a wireless feature, riders can compete live with other exercise enthusiasts via the World Wide Web (International Fitness Holdings 2011).

If balance and coordination are not issues, then bicycle riding on the street or on a mountain bike trail is another sport that individuals on the autism spectrum could engage in. However, the person’s ability to judge traffic and danger should be assessed prior to beginning this activity. Bicycle riding can not only be a great fitness activity but can also alleviate the person’s need to rely upon others for transportation. Again, as long as balance is not an issue, then skateboarding or

upon others for transportation. Again, as long as balance is not an issue, then skateboarding or surfing may be considered as a sport for the individual or a form of exercise. With these two activities, protective gear and strong swimming ability are critical.

Martial arts have also been recommended as sports that are excellent for children on the autism spectrum. Among the reported benefits are discipline, increased concentration and memory, better balance and coordination, physical fitness, and increased self-esteem. The repeated practicing of the forms provides the individual with an ASD predictability. The added benefit of martial arts training is that the individual learns self-defense skills. Children with ASDs are often the victims of

is that the individual learns self-defense skills. Children with ASDs are often the victims of bullying and as adults are the victims of hate crimes (Sherry 2010).

Horseback riding is a sport that has been proposed not only as a physical fitness activity but as a therapeutic intervention as well. The purported benefits of horseback riding are improved circulation, muscle control, and coordination (Baker 2008). It is also an activity where the participants form bonds with the horses and see the direct benefits of their attempts to communicate with their mounts. A distinction is made between hippotherapy and equine-assisted activities or therapeutic

mounts. A distinction is made between hippotherapy and equine-assisted activities or therapeutic riding. The main differences are who leads the activity and the cost. Hippotherapy is conducted by a licensed physical or occupational therapist. Consequently, it is considerably more expensive than therapeutic riding which is led by riding instructors. However, some medical insurance may cover hippotherapy (Baker 2008) (see “North American Riding for the Handicapped Association” for a listing of

(Baker 2008) (see “North American Riding for the Handicapped Association” for a listing of accredited facilities and certified instructors).

The concept of adaptive physical education is one that is derived from the field of special education. Adaptive physical education can be written into a child’s Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA). Adaptive physical education is usually taught by someone trained in physical therapy and is used for students who have difficulties with gross motor coordination problems and other types of disabilities who would have difficulty

with gross motor coordination problems and other types of disabilities who would have difficulty participating in standard physical education classes. Although many individuals on the spectrum have coordination issues, persons with ASDs may benefit from the social skills training aspects of APE. In these classes, the students can be explicitly taught the social rules of team sports and the methods of verbal and nonverbal communication inherent in many games.

A slightly different concept is adaptive physical activity. “Adapted physical activity (APA) is a professional branch of kinesiology/physical education/sport & human movement sciences, which is directed toward persons who require adaptation for participation in the context of physical activity” (International Federation of Adaptive Physical Activity [IFAPA] 2011). Rather than focus upon the therapeutic aspects of working with a population, this approach to sports focuses upon access and

therapeutic aspects of working with a population, this approach to sports focuses upon access and adaptation. “In contrast to physical therapies, APA is dedicated to the concepts of empowerment and ecological validity. This means that physical activity of participants is self-driven and targeted towards mastery and excellence” (IFAPA 2011). Although originally this approach evolved from the area of physical disabilities, it is a highly individualized approach that not only involves designing

of physical disabilities, it is a highly individualized approach that not only involves designing and modifying equipment to maximize participation in a sport but also includes “task criteria (e.g., modifying skill quality criteria or using a different skill), instructions (e.g., using personal supports, peer tutors, non-verbal instructions, motivational strategies), physical and social environments (e.g., increasing or decreasing court dimensions; segregated vs. inclusive; type of training

(e.g., increasing or decreasing court dimensions; segregated vs. inclusive; type of training climate: mastery oriented, collaborative or competitive social environment; degree of peer and parental support), & rules (e.g., double bounce rule in wheelchair tennis)” (IFAPA 2011). The philosophy of this approach is best summarized from its web site: “adapted physical activity is about individualizing instruction, matching personal strengths and interests with appropriate activities and adapting

instruction, matching personal strengths and interests with appropriate activities and adapting environments to promote full participation in physical activity, regardless of the population being engaged” (IFAPA 2011).

For individuals on the autism spectrum who are truly interested in team sports, the task is to find adaptive physical activities in order to participate in sports as a physical fitness activity. Adaptive leagues are being organized in team sports such as baseball, soccer, bowling, and basketball. A keyword search using “adaptive sports leagues” in an Internet browser can help identify leagues in a local area. If no adaptive leagues are available in the area, then speaking to the organizers and

a local area. If no adaptive leagues are available in the area, then speaking to the organizers and coaches of the local leagues may be a strategy to determine if they have a supportive attitude and philosophy of sportsmanship to include individuals on the autism spectrum.

Adaptive physical activities have been organized for team sports but for high adventure sports as well. This can include skiing, snowboarding, and even scuba diving. With skiing and snowboarding, the individual should be assessed for balance issues, and adaptations should be made accordingly. Prior to scuba diving, participants must be assessed for contra-indications to scuba diving which include claustrophobia, asthma, seizure disorder, heart conditions, and potential ear problems. Scuba

claustrophobia, asthma, seizure disorder, heart conditions, and potential ear problems. Scuba diving as a sport has, inherent to it, many of the same benefits as swimming but also has additional benefits. Diving teaches participants navigation skills, nonverbal communication, strong reliance on others through the buddy system, emergency management, concentration, and attention to detail (e.g., time, depth, and air consumption). Some individuals have keen interests in marine biology, and dive

time, depth, and air consumption). Some individuals have keen interests in marine biology, and dive trips can be organized around fish and coral identification. Others have interests in history and naval architecture. Nondive time can be spent researching shipwreck sites to explore at a later date on a scuba trip. Many individuals on the autism spectrum are fascinated with computers. The computer can be used not only to research shipwreck sites but other dive sites as well. Dive computers are

can be used not only to research shipwreck sites but other dive sites as well. Dive computers are wrist or console-mounted devices that help a diver keep track of depth, time, and the buildup of nitrogen in the diver’s body. Finally, adaptive scuba diving can be the basis for adventure travel for individuals on the autism spectrum (Strayne 2011).

Future Directions What sport an individual selects to maintain his or her physical fitness is immaterial. What is important is that individuals on the autism spectrum need to participate in 20–30 min of physical activity daily (just like neurotypical individuals) in order to maintain a healthy lifestyle. The risk of obesity and its negative sequelae are higher for individuals on the autism spectrum. Therefore, it is imperative that sports and other forms of exercise become a part of their

Therefore, it is imperative that sports and other forms of exercise become a part of their daily routine. Future research should focus upon what services providers can do to help individuals on the autism spectrum develop a routine where they are engaged in physical activity including sports 20–30 min a day. From an advocacy perspective, the inclusion of individuals on the autism spectrum in sports is an ongoing effort.

SSIS SEL Synonyms Social skills; social emotional skills; social-emotional learning skills  Description The Social Skills Improvement System Social-Emotional Leaning Edition (SSIS SEL Edition; Gresham and Elliott 2017) Rating Forms assist professionals in screening and classifying students aged 3–18 years suspected of having significant social emotional learning (SEL) skill deficits. The SSIS Classwide Intervention Program (CIP) is a manualized and fully digitized online treatment programs for

Intervention Program (CIP) is a manualized and fully digitized online treatment programs for improving 23 social emotional skills identified by low frequency ratings on items on one or more Rating Forms. The SSIS uses a multirater (parents, teachers, and students with at least third-grade reading ability) approach that provides a comprehensive examination of five SEL competency areas (self-awareness, self-management, social awareness, relationship skills, and responsible decision making) and an

self-management, social awareness, relationship skills, and responsible decision making) and an overall academic competence scale. The instrument is available online or in paper version and yields norm-referenced scores based on a national sample of children representative of the 2006 US Census.

Given that autism is characterized by impaired social interactions, problems with verbal and nonverbal communication, and repetitive/stereotyped behaviors, the SSIS Rating Forms and related CIP intervention manual offer professionals a comprehensive assessment of key SEL skills and an aligned intervention program to specifically address skills identified as relative weaknesses. The SSIS SEL Edition, unlikely the original SSIS Rating Scales (Gresham and Elliott 2008), does not have a separate

unlikely the original SSIS Rating Scales (Gresham and Elliott 2008), does not have a separate set of Problem Behavior scales. Thus, autism spectrum disorder (ASD) behaviors are not directly measured on the SEL Edition Rating Forms, but many SEL behaviors commonly targeted for intervention with children with ASD are assessed and aligned with CIP skill units.

Historical Background The SSiS Rating Scale originally was published in 1990 as the Social Skills Rating System (SSRS; Gresham and Elliott 1990). The SSRS was reportedly used by many professionals as part of their autism screening efforts; however, the SSRS was not designed with autism or autism spectrum disorders in mind. When the revision of the SSiS was being conceptualized, the authors consult with educators serving autistic children and the Diagnostic and Statistical Manual of Mental

with educators serving autistic children and the Diagnostic and Statistical Manual of Mental Disorders (4th ed., 1994) of the American Psychiatric Association and the National Research Council’s report (2001) on Educating Children with Autism to ensure they were sensitive to critical identifying behaviors and conditions.

The Collaborative for Academic, Social, and Emotional Learning (CASEL 2013) SEL Framework that features five competency domains (listed above) inspired the new SSIS SEL Edition Rating Forms (SSIS SEL RF) and the SSIS SEL Edition Screening and Progress Monitoring Scales (Elliott and Gresham 2017a, b), both published in 2017.

Psychometric Data The SSIS SEL-RF is comprised of the same 46 social behaviors as the original SSIS Rating Scales, along with five internalizing behaviors (reverse scored). These 51 items, based on a confirmatory factor analysis, represent the five SEL competency domains theorized in the CASEL SEL competency framework. The SSIS SEL Edition Manual provides extensive validity evidence based on test content, internal structure, intercorrelations among scales and subscales, item-total

based on test content, internal structure, intercorrelations among scales and subscales, item-total correlations, and relations with other variables (Gresham and Elliott 2017).

Specifically, subscale coefficient alphas on the SSIS SEL-RF ranged from 0.69 (Self-Awareness, Spanish Parent Version) to 0.97 (several subscales across forms), while the lowest alpha for a Composite scale was 0.94. In general, the Self-Awareness subscale yielded slightly lower coefficient alphas than the Self-control subscale, its corresponding subscale on the SSIS-RS. These results are especially apparent on the Parent English and Spanish forms. The internal consistency coefficients for the

apparent on the Parent English and Spanish forms. The internal consistency coefficients for the Responsible Decision Making scale largely equal or exceed those of its related SSIS-RS subscales of Assertion and Responsibility.

A comparison of teacher ratings between the SSIS SEL-RF and SSIS-RS forms revealed high levels of agreement across composite and subscale scores (p < 0.05). The SSIS SEL-RF Composite (r ¼ 0.98) and Core Skills (r ¼ 0.92) scales strongly correlated with the SSIS-RS Social Skills scale and demonstrated moderate to high correlations with the corresponding subscales. Furthermore, significant negative relationships were revealed between teacher ratings on the SSIS SEL Composite and Core Skills

relationships were revealed between teacher ratings on the SSIS SEL Composite and Core Skills scores with the SSIS-RS Problem Behaviors scale and subscale scores, providing evidence for divergent validity of the negative relationship between social emotional skills and problem behaviors.

Similar to the comparisons of teacher ratings, parent ratings on the SEL composite scale, Core Skill scale, and related subscales yielded high correlations across the SSIS-RS Social Skills scale and subscales (p < 0.05). Concerning divergent validity, all SSIS SEL-RF parent ratings negatively correlated with the SSIS-RS Problem Behavior composite scale and subscales, providing further evidence for differences between positive social and emotional skills as measured by the SSIS SEL and problem

differences between positive social and emotional skills as measured by the SSIS SEL and problem behaviors.

Correlations between student ratings on the SSIS SEL-RF and SSIS-RS also revealed strong positive relationships between all composite scales and subscales (p < 0.05). These results provide support for the convergent validity between the two forms. Furthermore, ratings between the SSIS SEL-RF skills and the SSIS-RS Problem Behavior composite scale and subscales demonstrated strong negative relationships, presenting additional evidence for divergent validity. An exception to these results was the

presenting additional evidence for divergent validity. An exception to these results was the Internalizing subscale on the SSIS-RS, which did not produce any correlations higher than 0.18 with the SSIS SEL-RF scales. Additionally, the relationship between Social Awareness and Hyperactivity/Impulsivity ratings was also weak (r ¼ 0.16).

Correlations between the SSIS-RS and SSIS SEL Edition with the Behavioral Assessment System for Children, Second Edition (BASC-2; Reynolds and Kamphaus 2004) are moderate to high, depending on the scales and subscales. Correlations between the SSIS-RF total social skills scores and the socialization scores of the Vineland Adaptive Behavior Scales, Second Edition (Vineland II; Sparrow et al. 2005) are also moderate to high for the teacher and parent forms, respectively.

Using a sample of 50 students with an autism spectrum disorder as diagnosed by the DSM-IV-TR, a known group comparison analysis with a nonclinical sample was conducted. On the Teacher and Parent forms of the SSiS, all the mean score differences were statistically significant. The SEL scale means at least 1.5 standard deviations lower than the nonclinical reference sample of students. These results are consistent with expectations that individuals with autism spectrum disorder have major

results are consistent with expectations that individuals with autism spectrum disorder have major deficiencies in social emotional skills. Thus, lending substantial support for the validity of the scores of this subscale as a measure of behaviors typically exhibited by individuals diagnosed with autism.

Clinical Uses The SSIS Rating Forms, comprised of the Teacher, Parent, and Student rating forms, are intended to be used as comprehensive measures of children’s social emotional skills. In particular, these rating scales are designed to identify social emotional skill acquisition and performance deficits in areas of self-awareness, self-management, social awareness, relationship skills, and responsible decision making. By using the nationally representative norming sample for comparison, it is

decision making. By using the nationally representative norming sample for comparison, it is possible to get a clear comparison between a student suspected of an autism spectrum disorder to a same age and sex comparison group of non-clinical students. The assessment results can be used to identify specific skill deficits that link directly to SSIS CIP intervention skill units, where SEL skills are directly taught via a manualized treatment supported with rich online resources designed to engage

directly taught via a manualized treatment supported with rich online resources designed to engage students in the process of skill development and generalization.

Stalking Definition Stalking, also referred to in the extant literature as obsessional following, obsessional harassment, and obsessive relational intrusion (Meloy 2001; Rosenfeld and Harmon 2002; Spitzberg and Cupach 2007), consists of a continuum of behaviors involving harassment and threats over time that serve no purpose other than to cause fear in the victim and distress over their safety (Sheridan and Davies 2004).

Historical Background The Stalking Risk Profile (MacKenzie et al. 2012) categorizes typologies of stalking representing various motivations and precipitating factors. Rejected stalking results from the dissolution of a close relationship such as former intimate partners. Often the rejected stalker is trying to repair the relationship and with it their sense of self-worth but when this proves fruitless, revenge may be the focus of their behavior.

Resentful stalking occurs when the stalker perceives they have been disrespected, humiliated, or have received unfair treatment. The victims may or may not know the perpetrator but are perceived to have committed the slight or injustice. The genesis of this type of stalking is revenge which can be maintained by the power they feel through demonstrations of the victims’ fear. When this type of stalking is directed to an organization, the stalker may feel like they are standing up for themselves

is directed to an organization, the stalker may feel like they are standing up for themselves against the oppressors.

Predatory stalking typically involves male perpetrators and female victims unknown to the perpetrator but with whom he has developed a sexual interest. The behaviors can range from voyeurism resulting in sexual gratification to using the stalking as a means of amassing information with the ultimate goal of sexual assault.

Intimacy-seeking stalking results from social isolation and a dearth of emotionally/physically intimate relationships. Intimacy seekers often target a stranger, celebrity, or casual acquaintance and develop delusional beliefs that they are having a relationship with their victim.

Similar to the intimacy seeker, the incompetent suitor operates from a position of loneliness though their motivations may be primarily focused on establishing sexual intimacy. The duration of their stalking is typically less than other typologies and is characterized by a mindblindness to the anguish of their victims. This lack of perspective taking is often associated with perpetrators with autism spectrum disorder (ASD).

For the purpose of this chapter, we will focus on the incompetent suitor typology and attempt to explain how the characteristics of ASD, in particular social challenges, perspective taking, circumscribed interests, and a strong need for routines and rituals, may be implicated in the commission of a stalking offense.

Current Knowledge Risk Factors Desire Versus Skillset to Initiate and Maintain Intimate Relationships Contrary to popular belief, many people with ASD desire intimate relationships. However, in assessments of their knowledge of sexuality, they score below their typical peers in all areas except body part identification and knowledge of menstruation (McCabe and Cummins 1996). They often have a paucity of vocabulary to describe relationships or identify what makes someone an appropriate target

of vocabulary to describe relationships or identify what makes someone an appropriate target for a romantic relationship. Moreover, for a group of people who have often been the targets of bullying and harassment (Little 2002), small gestures of kindness may be interpreted as romantic overtures. When asked what makes someone your girlfriend, a man with ASD serving a lengthy prison sentence for stalking reported “You just know.” When plumbed for further information he reported, “She was nice to

reported “You just know.” When plumbed for further information he reported, “She was nice to me.” This juxtaposition of the desire for intimacy with the challenges in understanding what constitutes an intimate relationship may lead to trouble and even criminal charges.

Victim as Circumscribed Interest Evidence would suggest that the majority of individuals with ASD have circumscribed interests, manifested as part of their experience of their ASD (Klin et al. 2007), and that these circumscribed interests occupy their attention longer and will prevent exploration of other pursuits (Sasson et al. 2008). It has been found that circumscribed interests may become more intense for those with ASD (Anthony et al. 2013) or involve greater emotional attraction (Sasson

intense for those with ASD (Anthony et al. 2013) or involve greater emotional attraction (Sasson et al. 2012) than interests do for typically developing (TD) individuals.

As individuals with ASD approach adolescence, they manifest desire to have normal sexual and romantic relations (Dewinter et al. 2015; Stokes and Kaur 2005), and yet, while normal sexual experiences can occur (Dewinter et al. 2015; Ginevra et al. 2015), compared to TD individuals, those with ASD more frequently fail to obtain lasting relationships (Dewinter et al. 2017; Stokes et al. 2007). Moreover, as a group these individuals have reduced sexual knowledge (Ginerva et al. 2016; Stokes and

as a group these individuals have reduced sexual knowledge (Ginerva et al. 2016; Stokes and Kaur 2005), which has been associated with sexual offending among a minority of this group (Baarsma et al. 2016). Few studies have examined offending behaviors, let alone stalking, among those with ASD. One, Stokes et al. (2007), examined 25 individuals with ASD found that this group reported a willingness to pursue strangers, ex partners (where they had these), and celebrities considerably more so than

to pursue strangers, ex partners (where they had these), and celebrities considerably more so than TD individuals and that they would pursue the victim longer if the rejection of this was made explicit. Indeed, individuals with ASD are noted for perseveration in the face of error (cf. Landry and Al-Taie 2016). This is akin to persisting and trying again using the same failed strategy as was first used seeking the possibility that with practice it may work. Broadbent and Stokes (2013) explored

used seeking the possibility that with practice it may work. Broadbent and Stokes (2013) explored whether the unwanted pursuit might be perversely encouraged by active rejection. They undertook a modified Wisconsin Card Sort Task with 50 individuals with high functioning ASD and 50 TD individuals, where in one condition negative reinforcement was removed. It was found that negative reinforcement trapped individuals with ASD, so that instead of modifying their strategies, those with ASD

trapped individuals with ASD, so that instead of modifying their strategies, those with ASD persisted longer in the face of negative reinforcement yet performed significantly better when offered only positive reinforcement for correct choices. These results suggest the victim may become a circumscribed interest for those with an ASD. Fortunately, recently published results suggest that individuals with ASD can learn strategies to reduce their inappropriate behavior and focus upon a person

with ASD can learn strategies to reduce their inappropriate behavior and focus upon a person (Dekker et al. 2015).

Stalking as the Routine/Ritual People with ASD often have a strong need for routines and rituals (Bishop et al. 2013). When a routine or ritual is disrupted, they often have a need to restart the ritual from the beginning. The daily calls, obsessional following, gift giving, showing up at the victim’s place of employment, and other behaviors that constitute obsessional harassment may have become part of the person’s routine. This completist mentality, “I have to start from the beginning until

part of the person’s routine. This completist mentality, “I have to start from the beginning until I get it right,” may lead to criminal stalking, probation or parole violations relative to restraining orders, or even instances of recidivism.

Difficulties with Perspective Taking Ironically, stalking is largely predicated on the perception of the victim (Ngo and Paternoster 2016) and, however, may be perpetrated due to lack of perspective taking on the part of the person with ASD. From the perspective of the victim, they may think they are simply being kind to a person who appears to have few friends while the person with ASD may assume that this is a romantic gesture. Faced with increasingly uncomfortable attention, the victim may

that this is a romantic gesture. Faced with increasingly uncomfortable attention, the victim may begin to ignore the person, thinking they will leave them alone. This can be interpreted by the person with ASD as a need to work harder to “win the person back.” The victim may then believe that if they speak to the person one more time, and explain themselves, they will be left alone. Unwittingly, they have engaged in intermittent reinforcement of the problem behavior (stalking), which builds the

have engaged in intermittent reinforcement of the problem behavior (stalking), which builds the most durable behaviors (Skinner 1954; Broadbent and Stokes 2013). The person with ASD is now faced with a lack of access to their romantic target so they may begin to seek out other places to see the person. This escalation could take the form of driving down the person’s street, walking past their home, and showing up at their place of work. Both parties may arrive at the same emotional state when

and showing up at their place of work. Both parties may arrive at the same emotional state when the police are called – terrified and wondering why this is happening to them.

Time Spent Online People with ASD spend an inordinate amount of time online relative to the time they spend pursuing other leisure activities (Mazurek and Wenstrup 2013). Cyberstalking in the form of obsessional following and harassment may result from the person’s proclivity toward online activities and the ease with which they can access personal information about their intended target. Moreover, cyberstalking may be easier than offline stalking as it can be done from a home location and

cyberstalking may be easier than offline stalking as it can be done from a home location and does not involve the degree or social interaction, transportation, or community access skills required for off-line stalking.

Media Influences The media’s influence on romantic knowledge is important. Many individuals consume a considerable amount of media (Nielsen 2014), and it has been found that individuals with ASD consume more (Mazurek and Wenstrup 2013) and are less discerning of this than are TD individuals (Kuo et al. 2015). Those with ASD have been found to be 2.3 times more likely to learn their romantic knowledge from the media than were TD individuals (Stokes et al. 2007). If this source of learning was

from the media than were TD individuals (Stokes et al. 2007). If this source of learning was the entirety of this issue, it would be simple to address. However, part of the trouble is that individuals with ASD tend to take things at face value, misinterpreting the kindness of others as indicating romantic interest (Attwood 2007). Viewers without autism likely recognize the hyperbole in the popular media when it comes to the glorification of stalking characterized by romantic tenacity that

media when it comes to the glorification of stalking characterized by romantic tenacity that results in obtaining the affections of the object of their desire (Spitzberg and Cadiz 2002). Media images, taken at face value, may become a script, albeit inappropriate, that the person with ASD utilizes in their romantic pursuits believing that this behavior will result in garnering the attention of their intimate target. It is considered likely that impaired theory of mind function may contribute to

intimate target. It is considered likely that impaired theory of mind function may contribute to this phenomenon. It is unsurprising that this misinterpretation will lead to rejection, and while the majority of individuals with ASD do not involve themselves in vengeful violence against others for this rejection, violent vengeful sexual fantasies have been reported in a small number of individuals with ASD (Palermo and Bogaerts 2015). More generally, those with ASD may utilize strategies to

with ASD (Palermo and Bogaerts 2015). More generally, those with ASD may utilize strategies to initiate romantic contact that would be unusual in their intensity compared to that undertaken by TD individuals. These may include touching, pursuing, and the making of threats (Stokes et al. 2007). The consequence is that the target person may reasonably seek to inform their pursuer that they are not interested, and this then leads the individuals with ASD to become trapped into trying harder to

interested, and this then leads the individuals with ASD to become trapped into trying harder to improve their technique in the forlorn hope that their target will recognize the suitability of them as a partner (Broadbent and Stokes 2013).

Future Directions Individuals with ASD need greater and fuller understanding of how to interact in the complex world of human relationships. It would be ideal to suggest that the TD world could adjust itself to better accommodate those with ASD. However, this is unlikely. Interpreting others’ intentions in romantic relationships is fraught with error among TD individuals (de Quadros-Wander and Stokes 2007); it is unlikely that the TD population will modify their evolutionarily derived

and Stokes 2007); it is unlikely that the TD population will modify their evolutionarily derived behaviors to accommodate those with ASD. Therefore, changes in understanding are required among those with ASD. To this end Dekker et al. (2015) have evolved a promising program of cognitive interventions that appears to assist those with ASD to adjust their thinking and behavior. Additionally, to date, the extent to which romantic rejection is associated with well-being failure in those with ASD

the extent to which romantic rejection is associated with well-being failure in those with ASD has yet to be elucidated, as has their responses to this. Unfortunately, individuals with ASD typically do not receive this type of education until after they have engaged in a behavior that has reached the level of criminality (Griffiths et al. 2002). They may not be aware of the illegality of their behavior nor are they aware of the consequences. Proactive intimacy education should be specifically

nor are they aware of the consequences. Proactive intimacy education should be specifically focused on increasing their understanding of relationship vocabulary and identification of appropriate targets for romantic pursuits, with a focus on developing appropriate replacement behaviors when rejection does occur (Gerhardt 2009). Targeted skill development can provide individuals with ASD with the necessary social tools to pursue the intimate relationships they so often desire.

Standard Deviation (SD) Definition The standard deviation is a measurement of the amount of variance a data set has from its mean. The larger the standard deviation the greater the variance; the smaller the standard deviation the less variance exists. The standard deviation is represented by the Greek letter sigma s. The standard deviation is calculated by finding the square root of the variance or, in other words, finding the square root of the average of the squared deviations of each number

or, in other words, finding the square root of the average of the squared deviations of each number from the mean of all the numbers.

Standard Error of the Mean Definition Standard Error of the Mean refers to the error associated with estimating a mean or average score of a population, or a sample (N), where N refers to the Number of subjects. It is defined mathematically as the standard deviation (S.D.) divided by the square root of N. The logic behind this simple formula is evidenced by the quick realization that the larger N becomes, the smaller the absolute error in estimating the true or population mean.

This same logic is used in polling undertaken in political races. When pollsters claim that the margin of error is, say, plus or minus three points and one candidate shows a lead of only 2% points, they say further that such a result must be interpreted with caution because it is “within the margin of error.” The margin of error is, in turn, based upon the size of the standard error of the mean, such that the larger the standard error, the less accurate the polling results, and vice versa. Let

such that the larger the standard error, the less accurate the polling results, and vice versa. Let us now take an example of the usefulness of knowing the standard error of the mean in understanding a hypothetical level of clinician agreement in diagnosing a given child as one of the following: non-autistic; on the autism spectrum, but not meeting full criteria for autism; or meeting current DSM criteria for autism. Suppose that using the Weighted Kappa statistic (Cohen 1968), with the

DSM criteria for autism. Suppose that using the Weighted Kappa statistic (Cohen 1968), with the corrected standard error due to Cicchetti and Fleiss (1977) and Fleiss et al. (1969), we discover the following: The overall Percentage of Observed (PO) agreement for our two well-trained clinicians is 94%. Suppose further that the Percentage of Expected (PE) agreement turns out to be 60%. Weighted Kappa is defined as the difference between observed and expected agreement (PO - PE) divided by the

Kappa is defined as the difference between observed and expected agreement (PO - PE) divided by the maximum difference from expected agreement that is possible (100 - PE). This translates into: Weighted Kappa = (94 - 60) / (100 - 60) = .85. The level of statistical significance of a given Weighted Kappa value is determined by dividing the size of Weighted Kappa by its Standard error of the mean (S.E.). This produces a z score such that a value of 1.96 or higher is statistically significant at

(S.E.). This produces a z score such that a value of 1.96 or higher is statistically significant at the .05 level of probability. Suppose our S.E. based upon 250 cases is .425. This produces a z of 2.00, which is indeed significant at the .05 level. But how do we interpret the Weighted Kappa value of .85, for level of clinical or practical significance? By the criteria of Cicchetti (1994), Cicchetti and Sparrow (1981), and Fleiss et al. (2003), the Weighted Kappa value can be considered

Cicchetti and Sparrow (1981), and Fleiss et al. (2003), the Weighted Kappa value can be considered Excellent, and by the earlier criteria of Landis and Koch (1977), a Weighted Kappa value of .85 can be considered to be almost perfect.

Standard Scores (Z and T Scores) Definition Standard Scores are raw scores that, for ease of interpretation, are converted to a common scale of measurement, or z distribution, with a mean or average value of 0 and a standard deviation of 1. When sample sizes, or Ns, are small, say less than 200, standard scores are interpreted as t scores. The simple formula for calculating a z score is: Z = X – 0/S.D. in which: X = the aforementioned raw score 0 = the converted average or mean score of the

– 0/S.D. in which: X = the aforementioned raw score 0 = the converted average or mean score of the population under investigation S.D. = the standard deviation of that population When the sample size is large, a z value of + or - 1.96 so-called standard deviation units is statistically significant at the conventional 5% level of statistical significance. Thus, if the difference in average adaptive behavior scores of a large group of Asperger individuals and a large group of high functioning

behavior scores of a large group of Asperger individuals and a large group of high functioning autistic persons resulted in a z value of 2.06, we would conclude, correctly, that the high functioning group had significantly higher overall adaptive behavior scores. However, if we now inspected the average scores of the two groups and discovered that they were standard scores of 104 and 100, respectively, we would likely conclude that although the difference was statistically significant, it was

we would likely conclude that although the difference was statistically significant, it was of limited clinical or practical significance. One should note that in the interpretation of the meaning of IQ score levels, scores are not based upon a mean or average of 0 and a standard deviation of 1; but rather -again for ease of interpretation- upon a mean of 100 (average IQ) and a standard deviation of 15. This is true for most, but not all major IQ tests. As an application, suppose we find in

of 15. This is true for most, but not all major IQ tests. As an application, suppose we find in another large-sample study that Asperger individuals have an average IQ of 125 as compared to the average IQ of 100 in a group of non-Asperger general population individuals; and that this was statistically significant, say, at the 1% level. The difference in the size of the two mean IQ levels would be seen to be of clinical or practical significance, as well. It has been noted that a sample size of

seen to be of clinical or practical significance, as well. It has been noted that a sample size of 200 is considered large; in fact, this is often used by biostatisticians to define a large N. This is no doubt related to the simple fact that as N gets larger, the t distribution values closer and closer approximate the z distribution values. For example, e at an N of 120, a t value of 1.98 would be required for statistical significance at the 5% level. Thus a sample size or N of 200 virtually

be required for statistical significance at the 5% level. Thus a sample size or N of 200 virtually guarantees the required z level of 1.96.

Standardization Introduction and Definition Standardization is the process by which a test is administered in a standard or uniform manner from one examinee to another, as well as from one testing milieu to another. This means the test uses a consistent set of rules or instructions to obtain performance scores that should be conceptually more reliable and valid (accurate) than would be the case if the test were administered in what might be referred to as changing or variable test

be the case if the test were administered in what might be referred to as changing or variable test administration formats – ones that could vary from one test administrator to another, and from one respondent, client, or examinee to another.

Standardization Sample It is safe to say that the most useful standardization sample would be a large and representative one in the country or other geographic area in which the process takes place.

Standard Scores Standard scores have exactly the same format, meaning, and interpretation as z scores. These scores are based upon a mean or average score of 0 and a standard deviation of 1. A score of 0 would indicate the mean or average score; while one of +1.96 would indicate a score that would be expected to be obtained by only 5% of respondents.

The same logic is used with standard test scores. Most standardized tests such as the Vineland Adaptive Behavior Scales and most cognitive or IQ tests are based upon an average or mean score of 100, with a standard deviation of 15. By the same reasoning as was done for the aforementioned z score, this would mean that only 5% of those taking either one of these two tests would be expected to score as high as 115 (again, one standard deviation above the mean or average score of 100).

Interpreting the Meaning of Standard Scores, with Reference to Vineland II Adaptive Behavior Scores
The possible range of Vineland Composite or Domain scores is between more than five standard deviations below the mean (or a standard score of 20) to four standard scores above the mean (or a score of 160) (Sparrow et al. 2005).
 Classifying Levels of Adaptive Behavior on the Basis of a Knowledge of Standard Scores

Classifying Levels of Adaptive Behavior on the Basis of a Knowledge of Standard Scores
As noted in Sparrow et al. (2005, p. 65), Vineland Adaptive Levels, like scores on most IQ tests, can be meaningfully classified on the basis of the size of the associated standard score. This can be illustrated, as follows:

| Adaptive level    | Standard Score Range | |-------------------|----------------------| | High              | 130 and above        | | Moderately high   | 115–129              | | Adequate          | 86–114               | | Moderately low    | 71–85                | | Low               | 70 and below         |  How Standardized Test Scores Can Be Used to Understand Autistic Behavior It is expected that a typical pattern of functioning for a person with Asperger Syndrome would be a

It is expected that a typical pattern of functioning for a person with Asperger Syndrome would be a relatively high IQ score, with a correspondingly relatively low Vineland Socialization standard score. Thus, it would not be unusual for such an individual to have an IQ score of, say, 125 in the moderately high range; but a socialization standard score of 80, or in the moderately low range. In developing an educational plan, emphasis would be mainly on developing and applying techniques to

developing an educational plan, emphasis would be mainly on developing and applying techniques to improve interpersonal skills, since cognitive skills are at a very adequate level of functioning.

Standardized Behavior Checklists Synonyms Rating scale; Report form  Definition A list of behaviors used to characterize an individual. Checklists can be self-rated, but in the ASD field they are most often completed by informants who know the person well, such as parents, teachers, workshop supervisors, or support staff. Both the items and the response categories are standardized, meaning that all users respond to the same questions on the same scale. Often this response scale will be

that all users respond to the same questions on the same scale. Often this response scale will be Likert-style, which means that responses are ordered along some dimension (e.g., strongly agree, agree, neutral, disagree, and strongly disagree). Responses are then scored in a standard manner, meaning that it is possible to compare the results across individuals or groups of individuals. Scores may be compared to reference samples, called normative data, to determine whether the individual’s

may be compared to reference samples, called normative data, to determine whether the individual’s behavior is similar to his or her peers (“peers” may be defined by any number of characteristics, but usually refers to chronological age and, sometimes, sex). A high-quality standardized checklist will be empirically derived, using standard scale development techniques (e.g., factor analysis, item response theory), and will have well-established psychometric properties (e.g., acceptable,

item response theory), and will have well-established psychometric properties (e.g., acceptable, reliability, validity).

Standardized behavior checklists are used for individuals with autism, both in clinical and research contexts. Checklist scores are not sufficient for a formal diagnosis of any disorder but may be used by the clinician to inform the diagnostic process. For example, a child’s scores on the Child Behavior Checklist, the most commonly used standardized behavior checklist in child psychiatry, may be used by the clinician to screen for the presence of externalizing or internalizing disorders.

be used by the clinician to screen for the presence of externalizing or internalizing disorders. Because checklists are usually faster to administer and less expensive than interview- or observation-based assessments, they are used frequently as outcomes in research. For example, scores on the Aberrant Behavior Checklist are often used to evaluate the effectiveness of medication intervention on problem behaviors in children with autism.

Stanford-Binet Intelligence Scales and Revised Versions Synonyms Early Stanford-Binet, Fifth Edition (Early SB5); SB5; Stanford-Binet; Stanford-Binet Intelligence Scales; Stanford-Binet Intelligence Test

Description The Stanford-Binet Intelligence Scales – Fifth Edition (SB5) – is a widely used individually administered measure of intelligence and cognitive abilities for children and adults ages 2 to 85+. Average testing time is 45–75 min to complete the full-scale IQ battery. An Abbreviated Battery IQ is available which takes 15–20 min to complete but provides a more restricted assessment of cognitive abilities. The nonverbal IQ domain which can be administered to individuals with limited

cognitive abilities. The nonverbal IQ domain which can be administered to individuals with limited language abilities, and the verbal IQ domain, which can be administered to individuals with motor and visual impairments, take approximately 30 min each to administer.

The SB5 provides a comprehensive assessment of five factors of cognitive ability: fluid reasoning (ability to solve nonverbal and verbal problems using reasoning skills), knowledge (fund of general information), quantitative processing (ability to work with numbers and solve numerical problems), visual-spatial processing (ability to see patterns, relationships, and spatial orientations), and working memory (ability to store, sort, and transform information in short-term memory), which provide a

memory (ability to store, sort, and transform information in short-term memory), which provide a profile of differential abilities. The SB5 also contains two domain composites: nonverbal IQ (NVIQ) and verbal IQ (VIQ). The five factors are crossed with the two domains resulting in ten subtests. The five factor indexes or the two domains can combine to form the full-scale IQ (FSIQ).

The SB5 has two subtests known as “the routing subtests” which are administered at the beginning of the test to help determine an initial estimate of the examinee’s abilities and to identify an appropriate developmental starting point for the remaining subtests. The nonverbal fluid reasoning subtest (object series and matrices) provides an overview of an examinee’s nonverbal ability, while the verbal knowledge subtest (vocabulary) is an indicator of an examinee’s verbal ability. Excluding “the

knowledge subtest (vocabulary) is an indicator of an examinee’s verbal ability. Excluding “the routing subtests,” items for all subtests are grouped into “testlets” which are arranged by five levels of difficulty for the verbal domain and six levels of difficulty for the nonverbal domain. Many of the SB5 subtests contain more than one item due to the wide range of ages and abilities that each subtest covers. During the administration of the SB5, individuals are administered a series of testlets

covers. During the administration of the SB5, individuals are administered a series of testlets at each level of functional ability. According to the author, the assessment of several domains in each functional level provides a broader assessment and a larger variety of tasks to maintain the examinee’s interest. Some subtests are also comprised of different types of “activities” which do not specifically conform to testlets. Activities may extend across several testlets with different levels of

conform to testlets. Activities may extend across several testlets with different levels of difficulty. The SB5 is organized into three item books, one for the routing subtests, one for the verbal subtests, and one for the nonverbal subtests.

The SB5 generates a standard score (M ¼ 100) with a standard deviation of 15, which is different than previous versions which had a standard deviation of 16. Subtest scores have a mean of 10 and a standard deviation of 3. The full-scale IQ of the SB5 ranges from 40 to 160.

Historical Background The SB5 is the newest version of this well-established intelligence assessment that has a long-standing and rich history. The Stanford-Binet is a descendant of the first intelligence test, the 1905 Binet scale. In 1916, Lewis Terman completed an American version of the Binet-Simon Intelligence Scale (SB1). The test was then revised in 1937 (SB2) and renormed in 1960 (Stanford-Binet Intelligence Scale, Form L-M). It was revised again in 1986, resulting in the

1960 (Stanford-Binet Intelligence Scale, Form L-M). It was revised again in 1986, resulting in the Stanford-Binet Intelligence Scale – Fourth Edition (SB-IV). The earliest version of the test used item groupings to assess functional ability, which were arranged by levels based on order of difficulty. The 1986 version, SB-IV, changed to a subtest-based point system based on items of increasing difficulty, much like other intelligences tests such as the Wechsler scales. The SB-IV also addressed

much like other intelligences tests such as the Wechsler scales. The SB-IV also addressed theories of g measuring crystallized and fluid abilities. The following is a summary of the new features of the fifth edition (Roid 2003b; Strauss et al. 2006):

(a) Expansion of the test to allow the assessment of very low and very high levels of cognitive ability (i.e., extensive high-end items for measuring the highest level of gifted performance and improved low-end items for better measurement of young children, low functioning older children, or adults with mental retardation)
(b) Restoration of the original toys and manipulatives for assessing preschoolers that had been removed from previous versions

(c) Increased clinical utility (d) Updated materials (e) Increased nonverbal items to assist with assessment of examinees with limited English, deafness, or communication disorders
(f) Increased range of domains measured by the test (g) Enhanced memory tasks to provide a comprehensive assessment for adults and the elderly
(h) Ability to compare verbal and nonverbal performance to assist with evaluating learning disabilities

As a result of these goals and changes, several new subtests were added, but many of the classic subtests were maintained. While the SB-IV measured four factors (verbal, quantitative, abstract/visual reasoning, and short-term memory), the SB5 measures five factors (fluid reasoning, knowledge, quantitative reasoning, visual-spatial processing, and working memory). These factors are based on Cattell-Horn-Carroll theories of intelligence which posits that there are ten broad areas of cognitive

theories of intelligence which posits that there are ten broad areas of cognitive ability with narrower abilities underlying these broad factors. Factors that are not measured by the SB5 are auditory processing, long-term retrieval, and processing speed. The SB5 maintained the “routing” subtest technique which was developed in the 1986 version and continues to present items according to function levels. For the SB5, both the routing subtests and functional levels were redesigned using current

levels. For the SB5, both the routing subtests and functional levels were redesigned using current psychometric methods including item response theory.

Psychometric Data Normative data for the SB5 were gathered from 4800 individuals between the ages of 2 and 85+ and was closely matched to the 2000 US Census based on age, gender, race/ethnicity, geographic region, and socioeconomic level. The SB5 was also administered to 1365 individuals with mental health and clinical diagnoses (e.g., ADHD, autism, developmental disability, motor impairment, mental retardation, speech/language impairment, deafness/hard of hearing, and emotional disturbance).

Internal reliability is strong for the full-scale IQ at all ages (r ¼ .97–.98). Reliabilities for the nonverbal IQ and verbal IQ are also very high (mean r ¼ .95 and .96). The Abbreviated Battery IQ is lower but still good (mean r ¼ .91, range .85–.96). Average reliabilities for the five factor index scores are high (r ¼ .90–.92). The average internal consistencies are also respectable (r ¼ .84 to .89). Overall, test-retest reliability is also good. (Four groups were retested after a test

.84 to .89). Overall, test-retest reliability is also good. (Four groups were retested after a test interval of 5–8 days; see Technical Manual.) Full-scale IQ and verbal IQ stability was high for all ages (r ¼ .93–.95). Nonverbal IQ was slightly lower (r ¼ .89–.93). Abbreviated Battery IQ was also lower but still acceptable (r ¼ .84–.87). Subtest and factor index test-retest reliability was generally good (>.80); however, the Working Memory Index only obtained adequate reliability in adults.

good (>.80); however, the Working Memory Index only obtained adequate reliability in adults. Practice effects were also evaluated and considered to be minimal after a 5–8-day interval. The -full-scale IQ increased two to four points, the verbal IQ increased two to three points, and the nonverbal IQ increased two to five points.

Content validity for the SB5 is based on 7 years of development which included literature review, expert advice, user surveys, factor analyses of previous versions, pilot studies, tryout edition, and item response theory modeling. Fairness of the SB5 was evaluated along gender, ethnic, racial, cultural, linguistic, exceptional group status, and religious group status. Fairness evaluation techniques included logical analyses, “offensiveness review” by expert bias reviewers from each of the

included logical analyses, “offensiveness review” by expert bias reviewers from each of the groups, and various empirical techniques such as conventional item analysis, construct-related studies, and studies of fairness prediction. Based on these evaluations, the SB5 is considered a fair test across groups. Concurrent and criterion validity data were obtained using the following tests: Stanford-Binet Intelligence Scale, Fourth Edition; Stanford-Binet Form L-M; Woodcock-Johnson III; Universal

Intelligence Scale, Fourth Edition; Stanford-Binet Form L-M; Woodcock-Johnson III; Universal Nonverbal Intelligence Test; WAIS-III; WIAT-II; WISC-III; and WPPSI-R.

Clinical Uses The SB5 has a wide variety of uses but is generally considered to be a measure of intelligence and verbal and nonverbal cognitive abilities. SB5 scales are used in the diagnosis of conditions such as intellectual disability (all ages), learning disabilities (all ages), and developmental cognitive delays in young children. It can also be helpful in the assessment of students in programs for the intellectually gifted. Supplemental assessments are usually administered along with the

for the intellectually gifted. Supplemental assessments are usually administered along with the SB5 to assist with assessment and diagnosis. The fifth edition of the SB is designed to provide information for interventions including individual family plans (IEPs) for young children, support from school-to-work transition planning, adolescent and adult career change, employee selection and classification, and adult workers compensation evaluations. The SB5 may also be useful in forensic contexts,

and adult workers compensation evaluations. The SB5 may also be useful in forensic contexts, as well as part of research assessment batteries investigating abilities and aptitudes. The SB5 does not measure processing speed, an important factor in the assessment of neuropsychological conditions, and therefore, the SB5 may need to be supplemented by other neuropsychological tests to assist with differential diagnoses. Clinical data on patients with traumatic brain injury and Alzheimer’s is also

diagnoses. Clinical data on patients with traumatic brain injury and Alzheimer’s is also lacking to date. The SB5 is typically administered by psychologists or trained psychometrists with supervision by a psychologist in clinical, counseling, school, or research settings. As with many psychological assessments, the overall usefulness of the SB5 is strengthened when combined with other appropriate assessments to give a well-rounded picture of the examinee.

STAR Program Definition The STAR (Strategies for Teaching based on Autism Research) Autism Program uses applied behavior analysis methods to teach skills in the areas of expressive and receptive language, spontaneous language production, functional routines, academic skills, play, and social interaction to children with ASD. It combines the highly structured teaching approach of discrete trial training with a more naturalistic-based approach of pivotal response teaching. Its curriculum was

training with a more naturalistic-based approach of pivotal response teaching. Its curriculum was designed to be implemented by a variety of professionals such as special educators and speech-language pathologists, as well as by para-professional support staff. The STAR program has three different curriculum modules chosen based on the child’s current level of functioning. However, limited empirical evidence is available to support the efficacy of this program.

Historical Background The STAR program is based on the work of Drs. Joel Arick and David Krug, who initially developed a program combining several behavioral strategies for teaching children with autism including discrete trial training, augmentative communication systems, and the teaching of independence skills. This program was utilized in local school systems. Subsequently, they published a book entitled, Autistic and Severely Handicapped in the Classroom: Assessment, Behavior Management

book entitled, Autistic and Severely Handicapped in the Classroom: Assessment, Behavior Management and Communication Training, describing the curriculum (Krug et al. 1981). In the late 1990s, Drs. Arick and Krug began a collaboration with Dr. Ruth Falco and Lauren Loos. This collaboration functioned to help develop a program driven by empirically based teaching methods.

Rationale or Underlying Theory The purpose of this program is to use research-supported strategies to teach children with autism basic skills including language, pre-academic, social skills, and functional routines. There is a highly structured discrete trial component to teach skills initially, and then a less structured, naturalistic approach is used in an attempt to generalize those skills.

Goals and Objectives This manualized program includes three levels, each with learning goals in the areas of language, social development, academic skills, and functional routines. Each child begins the program at the level that is congruent with their current developmental skill set.

Treatment Procedures Skills are initially taught in a discrete trial format in a 1:1 instructional setting and data are collected. Once the skill is mastered, the skill is then taught in a more naturalistic context using a pivotal response teaching method. The second edition of this manualized program is now available and includes multimedia materials.

Efficacy Information Limited empirical evidence is available to support the efficacy of this program. While there is evidence that supports the techniques used in this treatment approach, the program as a whole has limited data to support its efficacy.
 Outcome Measurement Arick et al. (2004) developed the Functional Assessment and Curriculum for Teaching Everyday Routines as a measure of a student’s ability to participate in classroom activities.

Qualifications of Treatment Providers Unlike many treatment programs for children on the autism spectrum that require implementation by a Board Certified Behavior Analyst, this program is designed to be implemented by a variety of individuals including teachers, support staff, and caregivers.

Startle Reflex Synonyms Startle response  Definition A species-specific automatic response to the sudden onset of an acoustic, visual, or tactile stimulus. This response, or reflex, is viewed as a defensive response that varies systematically with the individual’s emotional state. The startle response is characterized by a fast series of muscle contractions around the head, neck, and shoulders; the sudden closure of the eyelid (i.e., eye-blink) is the first, fastest, and most reliable

the sudden closure of the eyelid (i.e., eye-blink) is the first, fastest, and most reliable component of this reflexive response. The startle reflex is mediated in part by the amygdala. Strength and latency of startle reflex, or eyeblink, have been used to investigate amygdala function in various psychiatric populations with putative amygdala dysfunction (e.g., autism, anxiety).

State Educational Agency Definition In General “Stay-put requirement” refers to a provision in the Individuals with Disabilities Education Act (IDEA) (20 U.S.C. § 1415(j) (2011) that gives a child the right to “stay put” in his or her current educational placement pending resolution of a dispute between the child’s parents and the school district. Under the IDEA, school districts must provide special education and related services to “children with disabilities,” which specifically includes

special education and related services to “children with disabilities,” which specifically includes children with autism. When parents and the school district cannot agree on the special education and related services provided to a child, parents and the school district have the right to file a “due process” complaint requesting a hearing before an impartial hearing officer. Once a due process complaint is filed, the child must “stay put” unless the parents and school district agree otherwise

is filed, the child must “stay put” unless the parents and school district agree otherwise (or unless the school district places the child in an “interim alternative educational placement”). For example, if a school district notifies the parents of a child with autism that their child is no longer eligible for special education and related services, the parents have the right to file a due process complaint. Under the IDEA’s stay-put requirement, the child will continue to receive special

complaint. Under the IDEA’s stay-put requirement, the child will continue to receive special education and related services pending resolution of the dispute. Similarly, if a school district notifies the parents of a child with autism that the district wants to remove the child from a private special education placement and place the child back in the public schools, and if the parents disagree, the parents have the right to file a due process complaint and invoke “stay put” pending resolution

the parents have the right to file a due process complaint and invoke “stay put” pending resolution of the dispute.

In the Disciplinary Context The stay-put requirement has special importance in the disciplinary context. If a child with a disability violates a code of student conduct, school districts are free to suspend the child for up to 10 consecutive days. The rules governing discipline of children with disabilities for more than 10 consecutive days are complex. Generally speaking, if a school district determines that the child’s misconduct was not a “manifestation” of his or her disability, the

determines that the child’s misconduct was not a “manifestation” of his or her disability, the district may expel a child with a disability or suspend the child for more than 10 consecutive days so long as it provides educational services in an alternative setting. (If the misconduct involves weapons, drugs, or serious bodily injury, the school district may suspend the child for up to 45 days even if his or her behavior was a manifestation of his or her disability.) Importantly, in the

days even if his or her behavior was a manifestation of his or her disability.) Importantly, in the disciplinary context, the filing of a due process complaint does not require that the child “stay put” in his or her “predisciplinary” placement. Rather, the child will remain in his or her alternative educational placement pending resolution of the dispute.

Statewide Service Programs Definition Definition: Integrated programs that are explicitly structured to provide, or to directly facilitate the provision of, services to a population of persons with ASD across an entire state. Statewide programs that provide services directly to clients with ASD using a relatively uniform standard of practice are very rare, and so for purposes of comparison we also describe below examples of programs that are formally mandated, designed, and/or contracted to

also describe below examples of programs that are formally mandated, designed, and/or contracted to provide training to service providers in a specific approach related to ASD treatment and/or education across an entire state (e.g., statewide networks for training in positive behavior supports).

For purposes of this definition, we would only consider programs formally mandated, designed, and/or contracted to provide services across a state to be truly statewide. Private, regional centers may offer excellent services across a region but, absent a formal mandate, we cannot expect them to ensure reasonable access to these services to all residents of a state. We have also only considered programs established in the United States. Whereas many developed nations have a regional layer of

programs established in the United States. Whereas many developed nations have a regional layer of service organization (e.g., départements in France, provinces in Canada, etc.), descriptions of variations from country to country in the organization of this layer are beyond the scope of this entry. Nonetheless, the range of opportunities and challenges offered by statewide service programs in the United States is likely to be comparable to those apparent elsewhere (Doehring and Becker-Cottrill

United States is likely to be comparable to those apparent elsewhere (Doehring and Becker-Cottrill in preparation).

Historical Background As part of the broader national trend in the United States between 1890 and 1930, many states developed specialized centers for specific populations that (it was believed) could not be easily accommodated in society: for example, state psychiatric hospitals, state schools for the deaf and for the blind, etc. The development of these centers coincided with the increasingly prominent role of the state in health and education, and was spurred by advances in treatment. Some

prominent role of the state in health and education, and was spurred by advances in treatment. Some of these centers grew to be very large, serving thousands of patients who often resided there for much of their lives. With the rise of the disabilities rights movement, the passage of Public Law 94–142, and the move toward deinstitutionalization beginning in the mid-1970s, many states moved away from a reliance on large, stand-alone centers to the development of multisite, community-based

away from a reliance on large, stand-alone centers to the development of multisite, community-based programs. Throughout much of this period, autism remained too rare a disorder to merit its own specialized statewide centers, and we believe that this had a significant impact on the quality of services available. Moreover, because the needs of persons with autism span education and psychiatry, programs often developed in separate service systems, and persons with autism were served in other

programs often developed in separate service systems, and persons with autism were served in other programs that often failed to recognize the full spectrum of their needs. For example, some adults with autism were served in statewide centers designed to serve adults with schizophrenia, and these programs did not always recognize and address the fundamental deficits in social and other skills of adults with ASD. Other adults with autism were served in statewide centers designed to serve adults

adults with ASD. Other adults with autism were served in statewide centers designed to serve adults with intellectual disabilities and other psychiatric or conduct disorders, and these programs did not always recognize and address areas of special interest or relatively intact ability. Asperger syndrome was not yet recognized, and the persons affected often received little or no services.

Rationale or Underlying Theory With some exceptions (described below), statewide service programs tend to be distinguished less by a specific theoretical orientation than by a structure that ensures reasonable access to services to all eligible clients across the state, or training to the providers who support them. If state agencies seek to influence local service delivery, it is usually through the training provided, or via the broad parameters embodied in licensing and certification

through the training provided, or via the broad parameters embodied in licensing and certification requirements. We describe below various approaches to statewide service delivery. While our description is by no means exhaustive, we believe that these examples characterize the range of approaches used. And while some of the specific programs cited are among the most prominent, no doubt, there are other examples of innovative and effective programs that we have not described here.

The first, and perhaps best known, statewide service program is the TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren) program based at the University of North Carolina (UNC) (Mesibov et al. 2005). While readers seeking more information about the specific theoretical approach are referred to the entry regarding TEACCH, some characteristics regarding their model of service delivery can be highlighted here. First, TEACCH is one of the first attempts to

model of service delivery can be highlighted here. First, TEACCH is one of the first attempts to develop and strategically disseminate a specific educational model for persons with ASD across a state using a coordinated program of training. Every year, TEACCH faculty offer comprehensive training that follows a structured curriculum, at multiple sites and including summer sessions, to increase accessibility to educators. Second, TEACCH is also one of the first attempts to take full advantage of

to educators. Second, TEACCH is also one of the first attempts to take full advantage of the state university infrastructure to increase accessibility to ASD-specific training and services: In addition to its headquarters at UNC-Chapel Hill, TEACCH sites can be found on other campuses of UNC. TEACCH remains one of the few university-based consortia to have offered specific services (e.g., consultation and assessment) in addition to training, and to provide training that spans traditional public

and assessment) in addition to training, and to provide training that spans traditional public school and adult service systems.

Since the establishment of TEACCH, a number of other university-based programs have sought to provide training or services on a statewide basis. The West Virginia Autism Training Center (WV-ATC) at Marshall University was established in 1983 by the state legislature, and has since undertaken a number of statewide programs through a combination of state and federal grants. For example, the Family Focus Positive Behavior Support program was established initially in 1996 through a grant from the

Focus Positive Behavior Support program was established initially in 1996 through a grant from the Centers for Disease control, and has since expanded through support from the state legislature. The project provides education specialists to facilitate collaboration between family and school and other team members in the development and implementation of behavior support plans across the state of West Virginia (Becker-Cottrill et al. 2003). The Indiana Autism Resource Center (IRCA), established

West Virginia (Becker-Cottrill et al. 2003). The Indiana Autism Resource Center (IRCA), established in 1985 at Indiana University Bloomington, serves as a hub for a wide variety of training events and information about ASD. Both WV-ATC and IRCA also serve statewide needs’ assessment functions as designated by their legislatures: WV-ATC established the first state autism registry, and IRCA has conducted triennial needs’ assessment to inform state planning. A wider variety of university-based

conducted triennial needs’ assessment to inform state planning. A wider variety of university-based centers providing training across a region have been established or have increased their emphasis on ASD within the past 10 years, many of which are part of the network of University Centers of Excellence on Developmental Disabilities (see www.aucd.org).

There are other examples of statewide service and training programs that are not university based, but that grow out of agencies for public education or welfare. The Delaware Autism Program (DAP) is a consortium of public school programs that together serve the majority of students with ASD in the state (please see the entry for DAP for more information). The Commonwealth of Pennsylvania has implemented a variety of ASD-specific training programs that are primarily organized and/or funded more

a variety of ASD-specific training programs that are primarily organized and/or funded more directly by state agencies. For example, the Pennsylvania Training and Technical Assistance Network (PaTTAN), within the department of Education, has created a network of model classrooms using the verbal behavior and the competent learner models. PaTTAN also helps to convene the National Autism Conference, which includes specific tracks for family members and professionals. The Pennsylvania Bureau of

which includes specific tracks for family members and professionals. The Pennsylvania Bureau of Autism Services was established within the Department of Public Welfare in 2003 to fund and coordinate a wide variety of statewide training and service programs. Many of these specifically complement education-based services by focusing on adults with ASD, or community-based early identification and behavioral support. In general, the most common statewide training programs impacting ASD would be

behavioral support. In general, the most common statewide training programs impacting ASD would be those addressing the implementation of positive behavior supports; though not specific to ASD, these have great potential because challenging behaviors are perhaps the most likely reason for persons with ASD to be excluded from public schools and other community-based settings.

More recently, a number of federal grant-funded programs have sought to disseminate training in a coordinated way at a statewide level. The National Professional Development Center for Autism (NPDC), funded by the Office of Special Education Programs, U.S. Department of Education, currently involves the collaboration of the University of North Carolina at Chapel Hill (Frank Porter Graham Child Development Institute), the University of Wisconsin (Waisman Center), and the University of California

Institute), the University of Wisconsin (Waisman Center), and the University of California at Davis (M.I.N.D. Institute). The NPDC supports the development of ASD programs within the public schools by helping states to create statewide teams. These teams create model classrooms and develop training programs within their state. The Act Early Campaign orchestrated by the Centers for Disease Control (Daniel et al. 2009) has sought to create cross-agency statewide teams to identify opportunities to

(Daniel et al. 2009) has sought to create cross-agency statewide teams to identify opportunities to improve early detection and intervention in ASD.

Goals and Objectives In addition to the goals and objectives set by individual clients and their caregivers, the goals most distinct to statewide service programs are those intended to make designated services directly accessible to the full range of eligible clients. In some cases (e.g., early education and intervention services), specific regulations mandate the rapidity with which such services are provided. Consistent with research documenting disparities in early identification and

services are provided. Consistent with research documenting disparities in early identification and various aspects of intervention (Liptak et al. 2008), we would expect that some statewide service systems may face significant challenges when trying to ensure equal access for individuals and families from racial and ethnic minorities, at or near poverty level, and from rural regions.

Treatment Participants Eligibility requirements vary from program to program, and usually reflect the general criteria for accessing the service (e.g., only individuals between 3 and 21 years of age are eligible for services provided or funded via public schools). Because publicly funded statewide service programs are otherwise often designed, if not explicitly mandated, to be freely accessible, eligibility criteria are kept to a minimum. Some of the training programs (e.g., PBS) are intended

eligibility criteria are kept to a minimum. Some of the training programs (e.g., PBS) are intended to support a broad range of children and adolescents.

Treatment Procedures Recommended treatment procedures reflect the specific focus of the training or service program.

Efficacy Information While there may be data regarding the efficacy of specific treatment procedures employed or recommended by statewide service programs, there are at present no data that clearly demonstrate the specific efficacy of statewide service programs in providing or facilitating the use of these treatment procedures across a sample of clients that is representative of the population of the state.

Outcome Measurement While outcome measures for specific treatment procedures employed or recommended by statewide service programs may be described elsewhere, there are at present no models for defining the acceptable outcomes for statewide service programs per se. Statewide service programs seeking to evaluate outcomes related to access could estimate the proportion of eligible individuals who receive services, or who experience significant barriers in accessing services.

Qualifications of Treatment Providers ASD-specific qualifications for service providers are rarely defined for a specific statewide service or training program. Regulations established by the state for specific categories of providers (e.g., special education teacher certification, psychologist licensure, etc.) usually represent minimal criteria, and rarely reference ASD-specific competencies. Exceptions include ASD teacher certification requirements or endorsement opportunities implemented in

include ASD teacher certification requirements or endorsement opportunities implemented in several states with statewide service programs (e.g., teachers in the Delaware Autism Program must complete a graduate-level teaching certificate in ASD to continue teaching students with ASD). The increasing recognition of behavior analysts by state licensure boards, the growing consensus that Board Certification is a minimal entry criteria, and the central role played by behavior analysts in treatment,

is a minimal entry criteria, and the central role played by behavior analysts in treatment, all suggest that ASD-specific competencies are likely to be first established by states for behavior analysts.

Statistical Approaches to Subtyping Definition Subtyping or clustering is a type of data analysis that seeks to assign elements of a set into groups, or clusters, that are similar (in some sense) to each other, but different from elements in other clusters. It is distinct from classification, in which one or more group labels already exist and the algorithm attempts to explain these labels using observed variables; instead, clustering procedures attempt to create such labels from the observed

observed variables; instead, clustering procedures attempt to create such labels from the observed variables directly. For this reason, classification methods are sometimes called “supervised” methods because there are group labels available to “supervise” the partitioning of the data, while clustering methods are termed “unsupervised” because no such labels exist.

Historical Background As long as there has been data, there has been a desire to find subtypes within data. The historical roots of this emphasis can be seen in taxonomy, where the interest in clustering species into different phylogenic categories extends back to ancient Greece. However, the statistical approach to subtyping is a relatively recent phenomenon, made possible primarily by the modern computer, which made numerical analysis of large datasets possible. Since then, there has been

computer, which made numerical analysis of large datasets possible. Since then, there has been increasing interest in searching for and understanding subtypes in a wide variety of scientific disciplines, including psychology, where the subtyping of individuals based on their measurements on psychological markers and the categorizing of different types of psychiatric disorders have been frequent topics of research.

Current Knowledge Three of the most popular and useful approaches to clustering are k-means, mixture modeling, and hierarchical clustering. They are all readily available in common statistical software packages such as SPSS, SAS, and R.

K-Means K-means is a popular clustering algorithm that assigns observations to clusters based on how close they are to cluster centers. The algorithm takes the data in matrix form, with the n observations as rows and the p variables/measurements as columns, and computes distances from each observation to each of k cluster centers using Euclidean distance, the classic distance formula taught in school. K-means then assigns each observation to its closest center, recalculates the k cluster means

K-means then assigns each observation to its closest center, recalculates the k cluster means (hence the name), and repeats this back-and-forth process until the cluster assignments do not change anymore and the algorithm has “converged.” An example of a set of clusters obtained via k-means with two variables, 100 data points, and k ¼ 3 clusters is shown in Statistical Approaches to Subtyping, Fig. 1.

The k-means algorithm is computationally very fast, and the clusters it provides tend to be roughly comparable in size and shape. It requires specification of the number of clusters (see section “Determining the Number of Clusters,” below), and making the wrong choice can yield poor clustering results. Also, because it uses Euclidean distance, it works best when all measurements are on the same scale, or else the variable with the largest range will dominate the distances between points; the

scale, or else the variable with the largest range will dominate the distances between points; the data can always be scaled to adjust for this, however. Another limitation is that k-means is not designed to handle categorical measurements (because the distance between categorical labels, e.g., “Yes,” “No,” and “Maybe,” is undefined).

Mixture Modeling A broad set of clustering methods are collectively known as mixture models. In these methods, a number of “latent” or unknown subgroups are assumed, and a probability distribution for each subgroup is specified. For example, the observations from each cluster may come from a multivariate Normal distribution, with an unknown mean and standard deviation. Then, for each observation, the model can calculate the probabilities of belonging to each cluster: 90% for Cluster 1, 5% for

the model can calculate the probabilities of belonging to each cluster: 90% for Cluster 1, 5% for Cluster 2, etc. The final cluster assignment for each observation is chosen as the cluster with the largest probability.

Mixture models have a lot of advantages. First, unlike in k-means where clusters tend to be compact and circular in shape, the latent clusters found in a mixture model can take any arbitrary shape, which provides a lot of freedom for the researcher. Second, the cluster assignments in k-means and other methods are absolute – an observation either belongs to a given cluster or it does not, and each observation can only belong to one cluster at a time. In mixture modeling, on the other hand, there

observation can only belong to one cluster at a time. In mixture modeling, on the other hand, there is a measure of uncertainty in the cluster assignments, so if an observation is on the border between two cluster regions, it can have a 50–50 chance of belonging to either one. This can be very helpful in understanding how well the cluster assignments describe the data, and in identifying outliers that do not fit easily into any of the clusters. Like other clustering algorithms, mixture models

that do not fit easily into any of the clusters. Like other clustering algorithms, mixture models require you to specify the number of clusters, k. In addition, they also require that the distributions of each cluster be specified as well, which can yield a poor fit to the data if they are chosen incorrectly. While this can make the use of mixture models somewhat more complicated, the added complexity also allows clustering of more interesting and complex types of data, such as longitudinal

also allows clustering of more interesting and complex types of data, such as longitudinal data. By placing certain assumptions on the correlations between variables, mixture modeling can find clusters in sets of curves; popular variants of mixture modeling that do this are latent cluster analysis and latent trajectory analysis, and they have extensive applications to the longitudinal analysis of autism spectrum disorders.

Hierarchical Clustering Methods like k-means build their clusters by calculating the distance of each cluster to some cluster center. The cluster centers are not observations themselves, they are just arbitrary points. Alternatively, one could build clusters by grouping together observations that are close to each other, and far apart from the others. This is the strategy employed by hierarchical clustering.

The hierarchical clustering algorithm takes the set of all pairwise distances – distances from every observation to every other observation – and merges observations together into sets if they are very close to each other. The two closest observations get merged first, followed by the next two, and so on. The algorithm also needs one other piece of information: instructions on how to define the distance from a set to other observations (or other sets), given the pairwise distances. This piece

distance from a set to other observations (or other sets), given the pairwise distances. This piece is called the linkage criterion, and there are many to choose from. Using single linkage, the distance from an observation to a set is the minimum distance to any of the members of the set – two sets are close if they have a “single link” making them close together. Complete linkage instead uses the maximum distance to any member of the set, and two sets will be close under this criterion only if

maximum distance to any member of the set, and two sets will be close under this criterion only if every pair of observations is close to each other. Average linkage attempts a compromise between single and complete linkage, and averages the minimum and the maximum distances. Ward’s method takes a different approach, and combines the observations/sets together that give the smallest increase in variability by merging, so that each new cluster has the smallest possible variance.

Hierarchical clustering continues combining sets until all observations have been merged into a single, all-encompassing cluster. The end result is a cluster tree or cluster dendrogram made up of nested sets of clusters, where a pair of clusters is merged to give the cluster solution with one fewer label. As such, it provides the cluster solution for all values of k simultaneously, although it is still up to the researcher to determine which value of k to choose. Examples of cluster trees using

still up to the researcher to determine which value of k to choose. Examples of cluster trees using four different linkage criteria are shown in Statistical Approaches to Subtyping, Fig. 2.

Determining the Number of Clusters Determining the “correct” number of clusters is one of the most difficult aspects of clustering. Because there is no known “true” grouping in the data (if there were, clustering analysis would not be necessary), there is no way to know how correct any clustering result actually is, and instead alternative means of assessing the validity of a clustering result must be used. Such methods can be internal, by looking at the statistical differences between

must be used. Such methods can be internal, by looking at the statistical differences between clusters on the same variables used to make the clusters, or external, by relying on other variables not included in the clustering analysis to validate the clusters.

Choosing the number of subgroups using internal aspects of the cluster solution is commonly done by means of a scree plot. A scree plot graphs the number of clusters, k, on the x-axis, and a measure of variability or dispersion of the data on the y-axis. Typically the y-axis is the sum of squares, which is an unscaled version of the sample variance. An example of a scree plot is given in Statistical Approaches to Subtyping, Fig. 3. When k ¼ 1, the sum of squares gives the default amount of

Approaches to Subtyping, Fig. 3. When k ¼ 1, the sum of squares gives the default amount of variability in the data; for larger values of k, the sum of squares will be smaller because the clusters explain some of this variability. The scree plot shows how much explanatory power (measured by a drop in variability) is gained by each additional cluster, with big drops in variability for the first few clusters, but much smaller drops as more and more clusters are added because much of the

first few clusters, but much smaller drops as more and more clusters are added because much of the variability is already captured by earlier clusters. A scree plot can suggest the best choice of k if it displays a “kink” or “elbow,” where the marginal benefit of adding more clusters is relatively small and a more parsimonious clustering is preferable.

External information can also be very useful in choosing the preferred number of clusters. A set of clusters can be validated though hypothesis testing, e.g., comparing differences in means between clusters using Student’s t-test (for two clusters) or an analysis of variance (for three or more clusters). Statistically significant differences between some or all of the clusters on variables not used in the clustering algorithm can indicate meaningful differences between the subgroups. If some

used in the clustering algorithm can indicate meaningful differences between the subgroups. If some clusters do not exhibit statistically significant differences from each other, then they can perhaps be merged together. Care should be taken not to read too much into differences among the variables used to create the clusters, however, because the clustering procedure is designed to maximize differences on these variables, so they cannot serve as outside sources of validation.

Ultimately, the determination of the number of clusters is an art, not a science, and the strategies described here should be treated as rules of thumb. While scree plots and hypothesis tests can give some insight into the right number of clusters, equally important are the principles of parsimony and interpretability. If two clusters appear different on a few variables but not others and are small in size, then they can (and perhaps should) be merged to give fewer subgroups that are easier to

in size, then they can (and perhaps should) be merged to give fewer subgroups that are easier to understand. Choosing between five and six subgroups, for instance, is far less important than understanding what these subgroups represent to the researcher and to his or her scientific field.

Future Directions The subtyping methods described here work well for datasets in which the number of variables, p, is relatively small compared to the number of observations, n. When the number of variables is much larger than the number of observations, the data is said to be high-dimensional, and these methods may become computationally slow, or fail to give satisfactory results at all. Such datasets are increasingly more common in genetics and eye-tracking studies, so statistical research

datasets are increasingly more common in genetics and eye-tracking studies, so statistical research is currently ongoing to develop subtyping methods that work well in the high-dimensional setting. A few of these newer methods are subspace clustering, projected clustering, and correlation clustering.

Statistical Significance Definition Statistical vs. Clinical Significance: Statistical significance means simply that a result in a given comparison occurs beyond what one would expect by chance alone. Here, and by accepted convention, a comparative result is declared statistically significant if it occurs at or beyond the 5% level. By simple subtraction, this means that there is a 95% possibility that the result did not occur by chance.

The caveat here, and one that many journal editors and even some unenlightened biostatisticians fail to grasp, is that given a large enough number of cases or N, a given comparative result will inevitably occur beyond chance, at the 5% level of statistical significance. In order to guard against this so-called big N phenomenon, enlightened biostatisticians have devised guidelines for defining a result as having reached a level of clinical, as well as statistical significance.

A concrete example, albeit an apocryphal one, can be derived easily from the field of autism spectrum research. Suppose an inexperienced clinician on a scale of 0–100% agrees with the diagnosis of childhood autism, in 500 cases at 10%. With such a large N of cases, the result turns out to be statistically significant with a chance probability at the scientifically acceptable level of 5%. Well, any self-respecting autism expert would tell you that 10% chance-corrected agreement, from a clinical

self-respecting autism expert would tell you that 10% chance-corrected agreement, from a clinical perspective, is poor or trivial. Clinical significance to the rescue comes in the form of a set of clinical criteria developed by Cicchetti and Sparrow (1981) by which:

*   Agreement Clinical *   Level of significance: *   <40%, Poor *   40–59%, Fair *   60–74%, Good *   75–100%, Excellent  Stay-Put Requirement Synonyms Placement-pending requirement  Definition In General “Stay-put requirement” refers to a provision in the Individuals with Disabilities Education Act (IDEA) (20 U.S.C. § 1415(j) (2011) that gives a child the right to “stay put” in his or her current educational placement pending resolution of a dispute between the child’s parents and the school

educational placement pending resolution of a dispute between the child’s parents and the school district. Under the IDEA, school districts must provide special education and related services to “children with disabilities,” which specifically includes children with autism. When parents and the school district cannot agree on the special education and related services provided to a child, parents and the school district have the right to file a “due process” complaint requesting a hearing

and the school district have the right to file a “due process” complaint requesting a hearing before an impartial hearing officer. Once a due process complaint is filed, the child must “stay put” unless the parents and school district agree otherwise (or unless the school district places the child in an “interim alternative educational placement”). For example, if a school district notifies the parents of a child with autism that their child is no longer eligible for special education and

the parents of a child with autism that their child is no longer eligible for special education and related services, the parents have the right to file a due process complaint. Under the IDEA’s stay-put requirement, the child will continue to receive special education and related services pending resolution of the dispute. Similarly, if a school district notifies the parents of a child with autism that the district wants to remove the child from a private special education placement and place

that the district wants to remove the child from a private special education placement and place the child back in the public schools, and if the parents disagree, the parents have the right to file a due process complaint and invoke “stay put” pending resolution of the dispute.

In the Disciplinary Context The stay-put requirement has special importance in the disciplinary context. If a child with a disability violates a code of student conduct, school districts are free to suspend the child for up to 10 consecutive days. The rules governing discipline of children with disabilities for more than 10 consecutive days are complex. Generally speaking, if a school district determines that the child’s misconduct was not a “manifestation” of his or her disability, the

determines that the child’s misconduct was not a “manifestation” of his or her disability, the district may expel a child with a disability or suspend the child for more than 10 consecutive days so long as it provides educational services in an alternative setting. (If the misconduct involves weapons, drugs, or serious bodily injury, the school district may suspend the child for up to 45 days even if his or her behavior was a manifestation of his or her disability.) Importantly, in the

days even if his or her behavior was a manifestation of his or her disability.) Importantly, in the disciplinary context, the filing of a due process complaint does not require that the child “stay put” in his or her “predisciplinary” placement. Rather, the child will remain in his or her alternative educational placement pending resolution of the dispute.

STEM Education and Autism Spectrum Disorder Definition Our fundamental definition of how the fields of educational research and Autism at large interact is through the development of multimodal interactive learning environments as teaching and learning tools to improve the mathematical knowledge and problem-solving skills for learners with Autism Spectrum Disorders (ASD). Such interventions establish a potential importance for their use in special needs education in general. In particular,

a potential importance for their use in special needs education in general. In particular, STEM learning environments offer natural multimodal interactions to enhance the accessibility to complex mathematical and scientific ideas through technological affordances. Multimodal interfaces exist as combined input/output methods or as an alternative input, such as speech inputs (e.g., voice recognition), bodily motion, and touch (e.g., gesture-based interactions). The latter has evolved in recent

bodily motion, and touch (e.g., gesture-based interactions). The latter has evolved in recent years with the development of multitouch technologies (e.g., tablet PCs, Interactive Whiteboards, iPads). Combined input/output devices include haptic devices, which integrate visual modes with force feedback loops, offering the user the ability to feel objects or the results of their interactions with the environment. Such advances in educational technology offer the opportunities for learners with

the environment. Such advances in educational technology offer the opportunities for learners with Autism Spectrum Disorders (ASD) to explore and learn STEM ideas through nontraditional modes of interaction.

Historical Background Learners with Autism Spectrum Disorders represent one of the underrepresented STEM talent pools in the United States (Wei et al. 2012, 2013), since they have an innate attraction to STEM fields (Baron-Cohen et al. 2007; Baron-Cohen 2009) and they are more likely than the general population and other disability groups to choose a STEM major (Wei et al. 2012). Despite their potential to succeed in STEM fields, interest and ability alone may not be sufficient enough to

potential to succeed in STEM fields, interest and ability alone may not be sufficient enough to enable a learner with Autism Spectrum Disorders to pursue a STEM major in college (Wei et al. 2015). The data from the National Longitudinal Transition Study-2 (a nationally representative sample of students eligible for special education with an autism spectrum disorder) show that 34.1% of learners with ASD declared a major in STEM field in postsecondary education compared to 22.80% of students in

ASD declared a major in STEM field in postsecondary education compared to 22.80% of students in the general population (Chen and Weko 2009). The issue with learners with ASD, however, is postsecondary enrollment, where the rate of learners with ASD is the third lowest of all the disability categories: 30% versus 66% of general population (Wei et al. 2012). The main barriers that learners with ASD face in their learning are related to their challenges in executive functioning and social

with ASD face in their learning are related to their challenges in executive functioning and social communication: social interaction, flexible thinking, perspective taking, awareness of and adherence to social rules, language flexibility and discourse skills, motivation, and engagement (Hendricks and Wehman 2009). Research has indicated that learners with ASD use ineffective strategies for problem-solving because they may often focus on irrelevant information, and may not consider outcomes

because they may often focus on irrelevant information, and may not consider outcomes prior to the use of a strategy (Bauminger 2007; Solomon et al. 2004). The problem-solving skills that were studied are not mathematical, but rather related to daily routines, and there is a lack of research on how students with high-functioning autism can demonstrate executive functions in mathematical problem-solving. In a review of the literature of Computer-Assisted Instruction (where a computer is used to

In a review of the literature of Computer-Assisted Instruction (where a computer is used to learn the material and for assessment) between the years of 1997 and 2008, Pennington (2010) inferred that Computer-Assisted Instruction may have promise as an effective intervention for ASD learners, as most of the studies showed effectiveness for teaching academic literacy skills. In 2011, Wainer and Ingersoll concluded that the use of innovative computer technology is a promising strategy for

and Ingersoll concluded that the use of innovative computer technology is a promising strategy for delivering direct intervention to children and adults with ASD. What is missing, according to the authors, is demonstrating the efficacy, effectiveness, and social validity of such interventions across diverse samples of individuals with ASD.

Current Knowledge The use of computerized environments permits the development of skills in a predictable and controlled environment, while allowing students to work at their own pace and ability level (Golan and Baron-Cohen 2006). These features may be particularly beneficial for learners with Autism Spectrum Disorders given that they often experience discomfort in unpredictable social environments (Charlop-Christy et al. 2000). Learners with ASD typically have strong visual processing skills

(Charlop-Christy et al. 2000). Learners with ASD typically have strong visual processing skills and a predisposition towards electronic media. Accordingly, interventions using computer technology would be particularly appropriate and motivating (Shane and Albert 2008). The use of interesting visual and auditory stimuli to engage users may be beneficial for learners with ASD given their relative strength in visual processing (Rayner et al. 2009). More importantly, learners with ASD have an

strength in visual processing (Rayner et al. 2009). More importantly, learners with ASD have an innate tendency to gravitate toward STEM fields (Baron-Cohen 2009; Baron-Cohen et al. 2007). They have relatively greater aptitude to analyze or construct rule-based systems to explain the world around them, than to social and emotional reactions to other people’s thoughts and feelings (Baron-Cohen 2009). Systemizing often requires the thinking or skills needed to analyze and construct systems, which

Systemizing often requires the thinking or skills needed to analyze and construct systems, which also are necessary to perform successfully in many STEM-related fields (Baron-Cohen et al. 2007).

In Mathematics Education research, the use of dynamic interactive representationally rich environments has dominated the design and curriculum space for 25 years with basic and applied research in studies focused on learning, teaching effectiveness, motivation, and collaborative learning (Hegedus and Roschelle 2013). Science Education has utilized similar design spaces but have primarily focused on Logo, and virtual and augmented reality environments focused on real-world issues including

on Logo, and virtual and augmented reality environments focused on real-world issues including climate change and urban planning to name a few. As we build out into a space of learning for all, we notice a lack of attention (or extension) to learners with exceptionalities or specifically, learners with ASD. Multimodal interaction has evolved in various research areas and applications including computer vision/visualization, psychology, and artificial intelligence with increasing use in

computer vision/visualization, psychology, and artificial intelligence with increasing use in education particularly in early learning and developmental psychology. Jaimes and Sebe (2007) offer a survey of many of these disciplines including face recognition, facial expression analysis, vocal emotion, gesture recognition, human motion analysis, speech recognition, and eye tracking. They outline how a multimodal interaction can simply be an environment that responds to inputs in more than one

how a multimodal interaction can simply be an environment that responds to inputs in more than one modality or communication channel (e.g., speech, gesture, writing) through perceptual, attentive, or enactive interfaces. Dautenhahn (2003) has developed multimodal interactive learning environments as teaching and learning tools for the rehabilitation of children with autism, which establishes a potential importance for their use in special needs education in general.

Future Directions It is our current goal to understand the interaction of learners with Autism Spectrum Disorders utilizing the current affordances of educational technology, and to understand their interactivity in a multimodal environment. Learners with ASD have innate attraction to STEM fields and engage well with technology, but are underrepresented in STEM fields and as previous research has shown, inflexibility in thinking hinders their performance. Future work needs to focus on

has shown, inflexibility in thinking hinders their performance. Future work needs to focus on designing and implementing learning environments that focus on improving the executive functions and mathematical problem-solving skill development for learners with ASD. These environments will serve as accommodations for the needs of learners with Autism Spectrum Disorders to learn high-quality mathematics, rather than simplifying the content. Multimodal technologies provide an effective medium

rather than simplifying the content. Multimodal technologies provide an effective medium through which customizable supports may be provided to learners with ASD that have a variety of needs.

The fields of STEM (particularly Mathematics Education) research needs to fully understand the democratizing effect of examining each and every learner within its design paradigm. Much of the design, efficacy, and large-scale implementation studies through randomized controlled trials over the past two decades can be tested with learners with ASD. More specifically though, we need to focus on what kinds of experimental and methodological supports are necessary to conduct such work. Are

on what kinds of experimental and methodological supports are necessary to conduct such work. Are traditional research methods necessary and sufficient for such work particularly when we are examining communication skills? Traditional educational research methods focused on discourse and think-aloud protocols, or semi-structured interviewing protocols, might well not be sufficient. Do we focus on less qualitative and more behavioral techniques? Ultimately, our responses are subject to what is

less qualitative and more behavioral techniques? Ultimately, our responses are subject to what is needed in schools today: to shift the mindsets of teachers and support staff but ultimately to carefully examine, unpack, and rebuild the art of teaching and learning for each and every learner.

noting that although several subscales assess features of ASDs (e.g., Social Withdrawal, Stereotypic Behavior, Inappropriate Speech), the ABC was not intended to be a measure of overall autism severity. As research on specific genetic conditions becomes more common, investigators have attempted to identify syndrome-specific factor structures rather than employing the validated existing structure. This practice is likely to yield unstable results, and researchers are cautioned against this

This practice is likely to yield unstable results, and researchers are cautioned against this practice (Aman and Singh 2017). Recently, Aman et al. (2020) analyzed extensive data from participants with fragile X syndrome and concluded that the classical scoring algorithm, as presented in the ABC Manual, is the optimal way of presenting ABC results. Periodically, the ABC had been used to assess the effects of behavior intervention, both in formal research (Aman et al. 2009; Bearss et al. 2015)

effects of behavior intervention, both in formal research (Aman et al. 2009; Bearss et al. 2015) and in everyday care. Obviously, it is important to document the efficacy of such treatment. The ABC has been used to select participants for various forms of research intervention, especially pharmacological investigations. It may serve a similar role in routine clinical care to identify individuals who warrant preventive care and/or active intervention. As noted earlier, the ABC has been used to

who warrant preventive care and/or active intervention. As noted earlier, the ABC has been used to monitor behavior in those experiencing transition, such as moving from one living environment to another. It has also been used to assess co-occurring behavioral issues in people with genetic or metabolic syndromes, and this is another likely area of clinical application. The ABC has primarily been used to assess school-aged children, adolescents, and adults through late middle age. The largest

used to assess school-aged children, adolescents, and adults through late middle age. The largest psychometric study of the ABC in preschoolers (n ¼ 556, Kaat et al. 2014) produced convincing evidence that it is valid for use in this age group, at least for those with ASD. Although there have been a few studies among elderly people, its utility here has yet to be properly and thoroughly established. To conclude, the ABC is used to measure and document changes in behavior. These can be changes

To conclude, the ABC is used to measure and document changes in behavior. These can be changes associated with pharmacological or behavioral intervention or those instigated by environmental alterations. The ABC appears well-suited to assessing a range of ages extending from school-age through late middle age. It has been useful for characterizing the behavior of people with ASD, ID, and a multitude of developmental disability-specific syndromes.

Aberrant Behavior Checklist, Table 3 Summary of test-retest reliability studies with the ABC
 | Authors                 | Lag    | Sample size | Age group           | Correlation range | Median correlation |
| :---------------------- | :----- | :---------- | :------------------ | :---------------- | :----------------- |
| Aman et al. (1987b)     | 4 week | 28          | Adults              | 0.55–0.83         | 0.72 (mean)        |

| Freund and Reiss (1991) | 1 month | 30a         | Children            | 0.80–0.95         | 0.88               |
|                         | 1 month | 25b         | Children            | 0.50–0.67         | 0.61               |
| Ono (1996)              | 4 weeks | 43          | Children, Adults    | 0.84–0.90         | 0.85               |
| Schroeder et al. (1997) | 30 days | 30          | Adults              | 0.52–0.76         | 0.59               |

| Siegfrid (2000)c        | 4 week | 20          | Adults              | 0.84–0.98         | 0.94               |
| Miller et al. (2004)    | 2 weeks | 48          | Children            | 0.68–0.85b        | NR                 |
|                         |         |             |                     | 0.74–1.00d        | NR                 |
| Berry-Kravis et al. (2006) | 5 week; 2 week | 49          | Adults              | 0.60–0.90e        | 0.90               |

All references can be found in the Annotated Bibliography on the ABC (Aman 2015). Unless indicated otherwise, all were Pearson correlation coefficients

aParent ratings bTeacher ratings cIntraclass correlation coefficients dTeaching assistants eIntraclass correlation coefficient  Abnormal Involuntary Movement Scale Maureen Early1, Logan Wink2,3, Craig A. Erickson1,2,3 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

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 AIMS  Definition A scale used by physicians for evaluating and mon-itoring abnormal movements such as those associ-ated with tardive dyskinesia which rates the severity of abnormal movements from 0 to 4. The scale is used

tardive dyskinesia which rates the severity of abnormal movements from 0 to 4. The scale is used every 3–6 months to monitor patients taking antipsychotic medications for the development of movement-related side effects. The scale was devel-oped by the Psychopharmacology Research Branch in 1975 and is currently in the public domain.

See Also ▶Atypical Antipsychotics ▶Tardive Dyskinesia  Abnormality ▶Exceptionality  Abolishing Operations Amanda P. Laprime The Center for Children with Special Needs, Glastonbury, CT, USA University of Rochester Medical Center, Rochester, NY, USA  Definition Abolishing operations (AO): a general term to describe antecedent events which momentarily decrease the reinforcing or punishing effective-ness of a consequence and therefore alter the future frequency of behavior related to that

of a consequence and therefore alter the future frequency of behavior related to that con-sequence. AOs, in conjunction with establishing operations (EO; see establishing operation), fall under the greater omnibus term, motivating oper-ation (MO; see motivating operations). AOs involve events which result in a decrease in the effectiveness of a reinforcer or punisher when delivered contingent on a behavior. There are many unconditioned abolishing operations identi-fied in humans. Satiation of

a behavior. There are many unconditioned abolishing operations identi-fied in humans. Satiation of food, water, sleep, activity, oxygen, and warmth or cold all function as abolishing operations for related behavior and reinforcement (Cooper et al. 2007). For example, having just eaten lunch functions as an AO for food as a reinforcer which momentarily decreases any behavior reinforced by food.

Historical Background Skinner (1938) discussed abolishing operations under the framework of “Drive” and “Drive Con-ditions,” noting that satiation has an abative effect on behavior. Original work around motivation combined EOs and AOs into one general cate-gory. More recently, the AO has been defined and studied as a motivative variable in its own right (Laraway et al. 2003; see motivating opera-tions for a further discussion of the evolution of motivating operations).

Current Knowledge The concept of the AO has been influential to behavior interventions for individuals with autism spectrum disorders (ASD). The functional assessment of behavior has clearly demonstrated the significance of reinforcement for challenging behavior. Many research studies have focused on reducing challenging behavior by teaching new behaviors which can result in the same reinforcer. Interventions that rely on an AO analysis differ from consequence-based interventions in that they

Interventions that rely on an AO analysis differ from consequence-based interventions in that they involve the antecedent. Specifically, inter-ventions involving the AO are referred to as ante-cedent interventions. Antecedent interventions modify or remove the environmental events which precede behavior, to decrease or remove the likelihood of the behavior occurring in the future (Kern and Clemens 2007). An intervention which relies on an AO would seek to abolish or reduce the value of a

Clemens 2007). An intervention which relies on an AO would seek to abolish or reduce the value of a reinforcer. This reinforcer value-altering effect (Laraway et al. 2003) would subsequently result in a decrease of the target behavior. For the remainder of this entry, interventions relying on the AO for their effect will be referred to as AO-based interventions. For example, an individual with a history of overeating at parties may instead eat prior to attending a party. This intervention

a history of overeating at parties may instead eat prior to attending a party. This intervention (i.e., satiation of food) would create an AO for food as a reinforcer, thereby decreasing the probability of overeating at the party as previ-ously compared to when an EO for food was in place. The analysis of AOs has successfully contributed to the area of behavior assessment, interventions to reduce behaviors maintained by automatic reinforcement, and interventions to reduce behaviors maintained

behaviors maintained by automatic reinforcement, and interventions to reduce behaviors maintained by social (i.e., posi-tive or negative) reinforcement. These are discussed in detail below.

The Role of AOs in Behavior Assessment Functional behavior assessment (FBA) and func-tional analyses (FA) help clinicians to understand how a behavior looks and functions in the envi-ronment. These assessments set the foundation for individualized interventions in clinical settings. Furthermore, they have become a “best-practice” component of any program which involves behavior intervention for individuals with ASD. Iwata et al. (1994) established functional analysis (FA) technology to better

individuals with ASD. Iwata et al. (1994) established functional analysis (FA) technology to better understand the unique environmental variables that evoke and maintain behaviors of interest. An FA rotates across a vari-ety of conditions which involve an EO for chal-lenging behavior (i.e., demand, alone, denied access, attention). One important component of all functional analyses is a “control” condition (i.e., play condition). In a control condition, there are preferred items (i.e., toys)

condition (i.e., play condition). In a control condition, there are preferred items (i.e., toys) available, no demands, and social interaction delivered on a time-based schedule. The control condition is spe-cifically set up to function as an AO for challeng-ing behavior. Behavior should not be evoked in this condition unless other reinforcers or pro-cesses maintain behavior. Recent research has conceptualized that turning behavior “off” in the control condition (by identifying the relevant AO

conceptualized that turning behavior “off” in the control condition (by identifying the relevant AO variables) is just as important as turning it on across other conditions (by identifying relevant EO variables, Hanley et al. 2014). Information about the environmental events acting as an AO for challenging behavior has guided the develop-ment of interventions to reduce challenging behavior in individuals with ASD.

Reducing Challenging Behavior with AO-Based Interventions In addition to contributing to behavior assess-ment, AOs have been instrumental in developing effective treatment plans. AO-based interventions have demonstrated efficacy with challenging behaviors maintained by automatic reinforce-ment, as well as those maintained by social reinforcement. Automatic reinforcement is defined as that which is not mediated by another person. For example, when you feel an itch, scratch it, and it goes away,

not mediated by another person. For example, when you feel an itch, scratch it, and it goes away, the reinforcer (i.e., removal of the itch) does not rely on another person. Therefore, the behavior is automatically reinforced. Meaning, in the future, when you feel an itch, you will con-tinue to scratch, because discomfort is removed. This differs from a situation in which you feel an itch, ask someone to scratch the spot, and they scratch it. In the latter scenario, reinforcement is delivered

to scratch the spot, and they scratch it. In the latter scenario, reinforcement is delivered via an individual and is therefore social mediated. Stereotypic behavior, which involves repeated, restricted, and repetitive responses, is frequently maintained by automatic reinforce-ment. In this case, the behavior may be reinforced by the feeling, sound, or some other quality it itself produces. Automatically maintained chal-lenging behavior can interfere with prosocial rep-ertoires for individuals

maintained chal-lenging behavior can interfere with prosocial rep-ertoires for individuals with ASD and is often difficult to decrease. Historically, interventions targeting behaviors maintained by automatic rein-forcement have had limited impact or have neces-sitated aversive consequences for their effect. When effective, interventions for these types of behaviors often require intensive adult support, which does not lead to maintenance and general-ization of suppressed responses (Laprime and

which does not lead to maintenance and general-ization of suppressed responses (Laprime and Dittrich 2014). AO-based interventions have pro-vided an alternative way to reduce automatically maintained challenging behavior. Examples of these interventions include noncontingent reinforcement (NCR) and presession access to reinforcers. The commonality across these interventions is that a known reinforcer is delivered proactively. This differs from procedures which contingently omit reinforcement

is delivered proactively. This differs from procedures which contingently omit reinforcement (i.e., extinction) or deliver an alternate reinforcer (i.e., differential reinforcement). By satiating an individual on a reinforcer prior to it occurring, an AO may be established which decreases the frequency of the behavior. For example, if a child has previously engaged in repeated scripting of their favorite television show (challenging behavior) because of the preferred sound it creates

of their favorite television show (challenging behavior) because of the preferred sound it creates (reinforcer), delivering access to those sounds proactively may reduce echolalia for a duration of time fol-lowing the reinforcer delivery. This would be an example of presession access to a reinforcer. NCR procedures involve delivering a known reinforcer on a time-based schedule, unrelated to the occur-rence or nonoccurrence of a behavior (Cooper et al. 2007). For instance, if a child throws an

occur-rence or nonoccurrence of a behavior (Cooper et al. 2007). For instance, if a child throws an object (challenging behavior) because of the sound it creates (reinforcer), an AO may be established by proactively providing set times in which designated objects can be thrown to create the same sound. This intervention would create an AO for the sounds as a reinforcer and subse-quently reduce throwing behavior for a period of time following intervention. NCR has success-fully reduced a variety

behavior for a period of time following intervention. NCR has success-fully reduced a variety of topographies of behav-ior maintained by automatic reinforcement. These include but are not limited to rumination (Carroll et al. 2011), vocal stereotypy (Lang et al. 2009), self-injury (Horner et al. 1991), mouthing (Simmons et al. 2003), as well as behaviors maintained by social reinforcers (discussed in more detail below). Presession access to rein-forcers has been demonstrated to reduce echolalia

in more detail below). Presession access to rein-forcers has been demonstrated to reduce echolalia (Laprime and Dittrich 2014), vocal stereotypy (Berg et al. 2000; Rispoli et al. 2013), property destruction (O’Reilly et al. 2009), and more gen-eral challenging behavior such as aggression or tantrums (Chung and Cannella-Malone 2010; Lang et al. 2010).

AO-based interventions have also been prom-inently featured in the literature on challenging behaviors maintained by social reinforcement. Social positive reinforcement involves the addi-tion of a preferred stimulus following a behavior (such as attention or a tangible item), while social negative reinforcement involves the removal of something aversive following a behavior (such as a difficult academic assignment). Both positive and negative reinforcement involve reinforcement that is mediated

assignment). Both positive and negative reinforcement involve reinforcement that is mediated by someone else. For instance, if a child is presented with academic work, rips it up, and someone takes away the academic demand, the escape (negative reinforcement) is mediated by another person. Several of the same AO-based interventions previously discussed (i.e., NCR and presession access to reinforcers) have been used with behaviors maintained by social reinforce-ment. Vollmer et al. (1995)

have been used with behaviors maintained by social reinforce-ment. Vollmer et al. (1995) demonstrated that noncontingent access to escape reduced self-injurious behavior maintained by escape from demands for two young men with developmental disabilities. The researchers provided escape from instruction on a time-based schedule (i.e., every 2 min). The intervention reliably reduced self-injurious behavior across both participating, and over time, the researchers increased the schedule of escape

behavior across both participating, and over time, the researchers increased the schedule of escape to one that was more naturalistic (i.e., every 10 min), without the reoccurrence of self-injury. Many studies have demonstrated the effi-cacy of NCR to create AOs for challenging behav-ior maintained by social negative (Butler and Luiselli 2007) and social positive (Derby et al. 1996; McComas et al. 2003) reinforcement. Along this line of research, several studies have focused on creating an AO

2003) reinforcement. Along this line of research, several studies have focused on creating an AO for escape-maintained behavior during academic instruction with chil-dren with ASD. All interventions involve pairing an environment or environmental situation with high levels of reinforcement. These AO-based interventions have included errorless instruction (Ebanks and Fisher 2003), rate of instruction (Roxburgh and Carbone 2012), stimulus demand fading (Pace et al. 1993), and the high-p request

(Roxburgh and Carbone 2012), stimulus demand fading (Pace et al. 1993), and the high-p request sequence (Mace et al. 1988). One example of an AO-based intervention to decrease escape-maintained problem behavior during academic work involved the technology of presession pairing (Kelly et al. 2015). While presession pairing is often described a best-practice approach for working with children with ASD, Kelly and colleagues were the first to systematically evalu-ate the degree to which the

with ASD, Kelly and colleagues were the first to systematically evalu-ate the degree to which the intervention created an AO for escape from demands as a reinforcer. In this study the authors provided access to highly preferred reinforcers, in the presence of an instruc-tor, for a set amount of time prior to academic instruction. They found that the intervention created an AO for escape and attention maintained challenging behavior during academic instruction for three children with ASD who

maintained challenging behavior during academic instruction for three children with ASD who engaged in a variety of challenging behavior (i.e., self-injury, refusal, aggression, and elopement). All partici-pants had decreased levels of challenging behav-ior and increased responding to instruction follow precession pairing sessions. Across all studies referenced here, AO-based interventions not only reduced target behaviors but resulted in increased participation with instruction for

not only reduced target behaviors but resulted in increased participation with instruction for participants.

A series of studies have also employed the AO to reduce challenging behaviors maintained by social positive reinforcement (Edrisinha et al. 2011; Derby et al. 1996; McComas et al. 2003; McGinnis et al. 2010). McGinnis and colleagues (2010) found that providing presession attention to three children with ASD and other develop-mental disabilities reduced their challenging behavior (self-injury, aggression, property destruction, and tantrums), for up to 15 min in subsequent test sessions. The

aggression, property destruction, and tantrums), for up to 15 min in subsequent test sessions. The authors compared a low-AO presession condition (with less pre-session exposure to attention) to a high-AO pre-session condition (with more presession exposure to attention). The results of the study demon-strated that while both AO conditions resulted in lower levels of problem behavior following expo-sure, the high-AO sessions resulted in the lowest levels. Marcus and Vollmer (1996) found that

expo-sure, the high-AO sessions resulted in the lowest levels. Marcus and Vollmer (1996) found that noncontingent access to tangible items effectively reduced aggressive and self-injurious behavior in three young children with ASD (two of the par-ticipants) and down syndrome (one participant). These studies are example of those which have contributed to the research on AO-based interven-tions to decrease potentially dangerous and intense challenging behaviors. Importantly, behavior reductions

decrease potentially dangerous and intense challenging behaviors. Importantly, behavior reductions were achieved in many of these studies without the need for punishment or extinction-based interventions. AO-based interventions have become a popu-lar choice for reducing challenging behaviors for children with ASD. As previously stated, AO-based interventions fall under the umbrella of antecedent interventions. AO-based interven-tions provide an alternative to interventions that require

interventions. AO-based interven-tions provide an alternative to interventions that require intensive schedules of reinforcement, pun-ishment, or extinction (Smith and Iwata 1997). Importantly, these interventions do not rely on another person to respond to each instance of behavior. For this reason, AO-based interventions may require less resources than other interven-tions such as differential reinforcement. Further-more, they reduce the probability of a behavior occurring at all, which is

reinforcement. Further-more, they reduce the probability of a behavior occurring at all, which is important for potentially dangerous behavior (such as self-injury or rumi-nation). Lastly, AO-based interventions may be easier for individuals to implement and reduce the need for hands-on, intensive intervention (Vollmer et al. 1995). One limitation to AO-based interventions is that their impact is relatively short-lived. The reason for this is that MOs function along a continuum. Immediately

is relatively short-lived. The reason for this is that MOs function along a continuum. Immediately following the delivery of a reinforcer, an individ-ual is satiated (AO) on that reinforcer. The AO (i.e., satiation) reduces the probability of the behavior related to the reinforcer occurring. As time increases from the delivery of the reinforcer, the satiation will wane and the individual will enter a state of deprivation. This change in states of motivation will create an establishing operation

a state of deprivation. This change in states of motivation will create an establishing operation (EO). The EO, by nature of its effect, will increase the probability of the behavior reoccurring. This analysis is important in understanding the long-term effects of AO-based interventions (Michael 2000). Another limitation to these interventions is that they do not change the contingencies which maintain challenging behavior. Therefore, the effect of an AO-based intervention is limited unless the

challenging behavior. Therefore, the effect of an AO-based intervention is limited unless the AO remains in place (Iwata et al. 1993).

Future Directions An understanding of AOs has been demonstrated to be an effective component of interventions to reduce challenging behavior for individuals with ASD. Continued research and application of inter-ventions based in the conceptualization of AOs are necessary to expand the analysis of behavior as it relates to these areas. It is important that the longevity and generality of these interventions continue to be assessed in the literature and in practice with individuals with ASD.

See Also ▶Establishing Operations ▶Functional Analysis ▶Functional Behavior Assessment ▶Motivating Operation ▶Reinforcement   Absence Seizures, Second Edition Jennifer M. Kwon1 and Ria Pal2 1Department of Neurology and Pediatrics (SMD), University of Rochester, School of Medicine and Dentistry, Rochester, NY, USA 2University of Rochester School of Medicine and Dentistry, Rochester, NY, USA  Note: In 2017, the International League Against Epilepsy (ILAE) revised the naming of seizures to make

In 2017, the International League Against Epilepsy (ILAE) revised the naming of seizures to make them more understandable. Terms like “petit mal” and “pyknolepsy” be avoided

Short Description or Definition An absence seizure consists of staring as the behavioral change which accompanies abnormal generalized electrical activity in the brain. The electrical brain activity seen in “typical” absence seizures is generalized 3-Hz spike and wave dis-charges. Absence seizures are brief (usually less than 15 s) and do not usually result in falling, loss of muscle tone, or jerking of the arms and legs.

Categorization Absence seizures are categorized as primarily generalized seizures. Childhood absence epilepsy has an onset between 3 and 8 years of age, and juvenile absence epilepsy has onset after 10 years.

Epidemiology Childhood absence epilepsy (CAE) has an inci-dence of 6.3 8/100,000 in children less than 15 years of age, and the majority are girls. CAE represents about 10% of all epilepsies and as such is among the most frequent types of epi-lepsy. Other seizure types may also occur in chil-dren with CAE. It is more common to have other seizure types with juvenile absence epilepsy (JAE). Absence epilepsy is not reported to occur with greater frequency among children and youth with autism

epilepsy is not reported to occur with greater frequency among children and youth with autism spectrum disorders. It has been associated with specific genes related to GABA function and calcium channel function.

Natural History, Prognostic Factors, and Outcomes Absence seizures occur most commonly in people under age 20, usually in children ages 6–12. Children who develop typical childhood absence epilepsy (CAE) are usually normal in their devel-opment. The seizures are brief, lasting just sec-onds, but can occur many times a day. They can typically be triggered by hyperventilation. Many children can become seizure-free but the percent-age varies. It has been reported that up to 90% of affected

can become seizure-free but the percent-age varies. It has been reported that up to 90% of affected children will be seizure-free by adoles-cence. There may be school and learning difficul-ties, particularly with verbal memory, seen in patients with CAE. Inattention is reported. When absence seizures have atypical features, such as EEG findings that are not simply 3-Hz spike and wave, or when the seizures can also be associated with convulsions or myoclonic jerks, it may be harder to become truly

can also be associated with convulsions or myoclonic jerks, it may be harder to become truly seizure-free.

Clinical Expression and Pathophysiology Absence seizures are related to GABA and voltage-dependent calcium channel functions. Thalamocortical tracts are implicated. Most absence seizures are considered idiopathic or of unknown etiology. While a genetic association has been identified for a small number of patients, absence epilepsy is idiopathic at this time. It has been reported in chil-dren with Angelman syndrome but has not been specifically associated with autism. It may be diffi-cult to

with Angelman syndrome but has not been specifically associated with autism. It may be diffi-cult to clinically differentiate staring episodes from behaviors that occur for other reasons in individuals who are inattentive, who stare, and who might have motor mannerisms on the basis of autism. Absence seizures may be accompanied by a glassy expres-sion (look absent), and affected children may drop things. They may have brief eyelid fluttering or other automatic, subtle movements.

Evaluation and Differential Diagnosis Evaluation is indicated if staring episodes lasting 5–30 s are observed in children or youth. They may or may not have repetitive motor movements. They will not turn to their name or alert when touched. People do not recall absence seizures. EEG is the diagnostic study of choice. Charac-teristic general synchronous, bilateral 2.5–4-Hz spike and slow-wave discharges are seen. General-ized activity on an EEG means that abnormal and synchronized epileptic

discharges are seen. General-ized activity on an EEG means that abnormal and synchronized epileptic activity is detected by all EEG electrodes (or most of the cortical surface). If they are frequent enough, a conventional EEG will capture an episode. If less frequent, prolonged monitoring with video may be necessary to identify if a staring episode is a seizure. As noted, it may be difficult to clinically distinguish absence seizures from inattention, overfocus, and staring in patients with ASD

distinguish absence seizures from inattention, overfocus, and staring in patients with ASD who might also have stereotyped movements. They are sometimes difficult to distinguish from atypical absence epilepsy and may occur with other sei-zure types as well. Absence seizures very rarely explain inattention in patients with ADHD. Since absence epilepsy may result in inatten-tion, there may be a negative effect on school work and social interaction. This may also result in psychosocial stress. The

effect on school work and social interaction. This may also result in psychosocial stress. The medications used to treat the seizures may further impact attention and learning. Decision on what medication to use must balance all of these factors.

Treatment The medications used to treat petit mal or absence seizures include ethosuximide, valproic acid, and lamotrigine. The first two have equivalent efficacy but ethosuximide is the initial monotherapy of choice due to fewer cognitive side effects. Forty to seventy percent of children are seizure-free within 4–5 months of therapy. In small studies, topiramate monotherapy has been ineffective for absence seizures. The utility of other anticonvul-sants, such as levetiracetam and zonisamide,

for absence seizures. The utility of other anticonvul-sants, such as levetiracetam and zonisamide, are under study. Some children with absence seizures that cannot be controlled by any combination of medicines may benefit from a ketogenic diet.

See Also ▶Electroencephalogram (EEG) ▶Seizures    Definition Academic skills have the same meaning within the field of autism as without; they refer to skills in subject areas that form the academic curriculum, available to all children in that country. Increas-ingly, children and young people within the autism spectrum are entitled to the skills, knowl-edge, and understanding available to others as a matter of human rights, although there may be problems in exercising these rights where there

as a matter of human rights, although there may be problems in exercising these rights where there are additional inherent problems (such as lan-guage or intellectual difficulties) or behavioral difficulties. There are also common comorbid conditions that may occur with autism (such as specific learning difficulties: dyslexia, dyspraxia) that may cause particular academic difficulties. However, there are no reasons why individuals with autism should be excluded from any aca-demic area as a result of

no reasons why individuals with autism should be excluded from any aca-demic area as a result of their autism alone. There may be difficulties in accessing certain subjects because of the way they are taught or the physical or social context in which they are taught. As with others, success in acquiring aca-demic skills in autism depends on intellectual level, particular talents, and interests, as well as an autism-friendly teaching approach.

Historical Background Although Kanner (1943) had recognized the bio-logical base of autism, he was later influenced by current psychological theories, which saw autism as a form of childhood schizophrenia with treat-ment confined to therapy for the child, or the family, depending on the theory of causation adopted. Thus, for two decades following the identification of autism, most children with autism were excluded from academic education of any kind. If there was treatment, it was of a clinical

were excluded from academic education of any kind. If there was treatment, it was of a clinical and/or therapeutic kind. It was left to a few pioneering schools (in the UK and Denmark) to demonstrate that these children were able to learn and benefit from education, although even then, the specialist curricula of such schools were largely concerned with teaching adaptive behav-iors and practical occupation skills; academic skills were still regarded as largely inappropriate. Two things changed

occupation skills; academic skills were still regarded as largely inappropriate. Two things changed this picture. Wing (1988) introduced the notion of an autism spectrum that included children and young people with average or above average intellectual ability and good structural language skills (introducing the term “Asperger’s syndrome” to describe such chil-dren). It became clear that many of these children (albeit often undiagnosed or misdiagnosed) were already in mainstream schools.

of these children (albeit often undiagnosed or misdiagnosed) were already in mainstream schools. Secondly, there grew a worldwide movement for the social inclu-sion of all children in education with the same entitlement to the culturally valued skills, knowl-edge, and understanding available to other chil-dren and young people in that culture. Inclusion is not about integration alone, where a child may be “allowed” access, but about the designing of cur-ricula and educational systems that take

may be “allowed” access, but about the designing of cur-ricula and educational systems that take account of all children, in all their diversity and needs, from design to implementation. This is an ideal that is still a “work in progress” in most countries, but it did open the door to the realization that many children on the autism spectrum could and should benefit from access to the full academic curriculum. The goal was to identify barriers to this process and to seek ways of overcoming them.

curriculum. The goal was to identify barriers to this process and to seek ways of overcoming them. The effects of these developments were that children with autism in many countries began to be included in special needs legislation that rec-ognized their entitlement to a broad and relevant curriculum, including academic skills. This did not always mean mainstream education since many children had learning and behavioral diffi-culties that made full integration problematic, and staffs in

had learning and behavioral diffi-culties that made full integration problematic, and staffs in mainstream schools were then largely unaware of the special needs of those with autism, and lacked strategies to meet those needs or help the pupils overcome their many barriers to learn-ing. However, special schools often (although not universally) adapted their curricula to include access to academic skills that enabled all their pupils to participate in the national curriculum of their country,

skills that enabled all their pupils to participate in the national curriculum of their country, albeit often adapted to individual needs. At the same time, as more children with autism were learning to be included in the general educational system available to others, a contrary movement developed from a clinical perspective, which claimed that education for those with autism should first focus on the remedial aspects, training the child in basic adaptive functioning as a precursor to any other

the remedial aspects, training the child in basic adaptive functioning as a precursor to any other form of learning. This was introduced with preschool children and made the claim that such programs would be so successful in remediating core difficulties that no special measures to access the academic curriculum would be needed. Some children appear to have benefited significantly from such intensive behav-ioral intervention at an early age, although there is no follow-up showing the later effects

behav-ioral intervention at an early age, although there is no follow-up showing the later effects on learning academic skills (except of the most basic skills of reading and writing). However, research shows that not all children benefit equally (Parsons et al. 2011) and that for some children (especially those of higher ability) it is not rele-vant to their academic learning. The emphasis on developmental, as opposed to academic, skills, however, has influenced some educational prac-tice,

developmental, as opposed to academic, skills, however, has influenced some educational prac-tice, especially in special schools.

Current Knowledge The growth of autobiographies of those with autism has also had a profound effect on the understanding of what might be appropriate cur-ricular content for those with autism. Many “suc-cessful” individuals with autism demonstrate that success (especially in terms of vocational success and being able to achieve financial independence) depends on building skills and expertise in partic-ular academic subjects at least as much as over-coming supposed “deficits” in functioning. The

academic subjects at least as much as over-coming supposed “deficits” in functioning. The influence of special interests in guiding and devel-oping academic skills has been shown to be even more important in autism than with other learners and “interest-led” curricula are being developed. Information technology (IT) is not a universal interest of those with autism, but it has been shown to be a valuable medium for learning for many (Murray and Aspinall 2006) and its increas-ing role in the

a valuable medium for learning for many (Murray and Aspinall 2006) and its increas-ing role in the academic curriculum of many schools has aided participation by those with autism. The end result has been that many more stu-dents with autism are succeeding academically, gaining qualifications at school, and entering fur-ther and higher education. Although most people with autism will continue to need understanding and some support even in universities, greater numbers are able to qualify. Sadly,

understanding and some support even in universities, greater numbers are able to qualify. Sadly, social difficul-ties and levels of anxiety remain high and may interfere with future job prospects and quality of life (Gelbar et al. 2014). Yet the chance to pursue areas of interest through academic study does of itself improve life for those with autism. Some do attempt to stay within academia, gaining more and more qualifications. Sometimes this is a positive outcome, but for some, it reflects fear

more and more qualifications. Sometimes this is a positive outcome, but for some, it reflects fear and anxiety about moving on from university to the wider world. Those who do succeed provide role models for younger students but also help reinforce the value of academic skills to people with autism. For those with additional learning difficulties, high academic achievement may be out of reach, but academic skills still have relevance in their education. Daily living skills may have a higher

but academic skills still have relevance in their education. Daily living skills may have a higher priority, but interest and development are fostered by participation in academic tasks and basic aca-demic skills are needed to live a life of dignity and some independence. A study by the Council of Europe a few years ago (Jordan 2009) showed that almost all countries across Europe “included” children and young people with autism within their education sys-tems, although the definition of

children and young people with autism within their education sys-tems, although the definition of “education” was varied. For some countries, especially where chil-dren with autism had additional learning difficul-ties, “education” was very like what other countries might describe as “clinical” practice. This was true of some countries that had devel-oped treatment services for people with autism for many decades and where standards of individual-ized treatment were very high. It is almost as if

many decades and where standards of individual-ized treatment were very high. It is almost as if successful “treatment” is seen as an alternative to inclusive education for some of these children. Even in countries where official policy is for full inclusion for all children with autism (including those with additional difficulties), there remain considerable barriers to its full and successful implementation (Jordan 2008), mostly related to insufficient understanding of autism in main-stream

implementation (Jordan 2008), mostly related to insufficient understanding of autism in main-stream schools. Many developed countries have made significant efforts to increase understanding of autism across the education service with online in-service training of staff and the growth of accredited programs in autism studies. Even where inclusive practice is well devel-oped, there are usually ways of excluding some children from some aspects of the academic cur-riculum, where these are not

ways of excluding some children from some aspects of the academic cur-riculum, where these are not considered relevant to the individual pupil. There will always be some children and young people for whom it is more advantageous to concentrate on a narrower band of academic subjects than is generally taught as part of the national curriculum. This might be because of specific difficulties with subjects that are not considered vital for that individual’s devel-opment and future quality of life or

that are not considered vital for that individual’s devel-opment and future quality of life or it may be because dropping some subjects will allow con-centration on other subjects that are more interest-ing and/or relevant to the individual. The problem is that not all such decisions are evidence based. Ultimately, each decision should be an individual one and there is no good scientific research that can decide which academic subjects will be of benefit to those with autism and which will not.

that can decide which academic subjects will be of benefit to those with autism and which will not. In fact, it is unlikely that such generalized state-ments will apply across such a heterogeneous population. Too often, such decisions are made based on assumptions that have not been tested.

Academic Subjects in Relation to Autism  Mathematics: It is often assumed that mathemat-ics will be a strength in autism but this is too broad an assumption. The early stages of mathematics (computation and rule-governed stages) are often areas of strength in autism. However, later stages may produce problems and the aspects that cause problems will vary according to learning style. For visual learners, geometry and graphical work may be strengths but for those who are not visual thinkers (and

geometry and graphical work may be strengths but for those who are not visual thinkers (and visual thinking is not universal across the spectrum) this may be a particular difficulty rather than a strength. For the larger group of visual thinkers, algebra rather than geometry may be a problem. Algebra represents a problem because to understand algebra, one has to under-stand reversibility of operations, which, in turn, requires explicit working memory ability – often a problem in autism. A recent

which, in turn, requires explicit working memory ability – often a problem in autism. A recent development is soft-ware (GRID algebra: Hewett 2016) that makes these internal operations visible (the child can see what operation has been performed and so needs to be reversed), but this awaits evaluation with children with autism. Even computation skills may be compromised by context and time constraints. When a numer-acy program was introduced as a core part of the National Curriculum in the UK,

When a numer-acy program was introduced as a core part of the National Curriculum in the UK, it was expected that this would pose no particular problems for those with autism. But this program emphasized mental arithmetic, conducted at speed in a class context. This proved disastrous for many with autism who could neither concentrate fully in such a group context nor access their answers at speed. It became clear that implicit knowledge of the answer might be there (and could be accessed given

It became clear that implicit knowledge of the answer might be there (and could be accessed given time) but there were problems in making the answer explicit and only responding when directed to (inhibiting responses if the teacher did not direct the question specifically at them). As a result many children with autism began to fail at a subject they had previously felt confident in, with disastrous effects on their morale and general learning ability.

One aspect of mathematics, however, has largely unrealized potential in autism: statistics. It is well established that people with autism struggle with uncertainty and that many behav-ioral issues arise when expected circumstances change or when people find it hard to give definite answers and keep to them. Being told that some-thing “may” happen or that we “will see” if an event unfolds will generally result in much dis-tress in individuals with autism and even chal-lenging behavior. Yet

generally result in much dis-tress in individuals with autism and even chal-lenging behavior. Yet clearly not all of life’s events can be predicted with certainty and people with autism need to be prepared for situations that change. As long as the individual is intellectually able enough to understand, this can be solved by introducing the notion of probability and statis-tics. In reality, saying that an event has a 90% chance of occurring tomorrow and a 10% chance of not occurring may have

that an event has a 90% chance of occurring tomorrow and a 10% chance of not occurring may have little basis in fact, but the numbers seem to make it more acceptable to the person with autism than if one just said it might or might not happen. Degrees of certainty can be refined as the child is taught the variables on which the occurrence depends and the degrees of confidence in that statement. Using such num-bers to replace indecisive language not only helps reduce distress and consequent

Using such num-bers to replace indecisive language not only helps reduce distress and consequent challenging behavior but also gives an acceptable language of numbers for describing and predicting the world. In some cases it can lead to a lifelong interest in statistics and even an occupation using statistics. On a less positive note, a special ability to calculate at speed may seem like an expression of a high level of mathematical ability that could be utilized in a work situation or be

expression of a high level of mathematical ability that could be utilized in a work situation or be useful for increasing academic ability. But high-speed cal-culators may have no insight into how answers are reached, that is, no ability to reflect or monitor their own learning. This can be a great drawback when it comes to examinations, where it is impor-tant to show working to demonstrate understand-ing: the actual correct answer carrying less weight than this working out. It can also prevent

the actual correct answer carrying less weight than this working out. It can also prevent effective vocational uses of this computational ability. Peo-ple with autism can sometimes have the capacity to add up a shopping list mentally, for example, but cannot follow the sequential process of recording each item on a cash register. The sad fact is that no shopper will trust the mental calcu-lations of someone who does not record them on a cash register so an apparent strength ends up having

of someone who does not record them on a cash register so an apparent strength ends up having little value.

Literature: Just as mathematics may be assumed to be universally strong in autism, so literature may be seen as a universal problem, but that is equally untrue. Written language is often easier than speech for people with autism, because it does not vary so much between people and situations. Some children with autism come to develop speech through written language for this reason, reversing the typical progression of being able to tell a story by arranging pictures in sequence before learning

typical progression of being able to tell a story by arranging pictures in sequence before learning to read. It is not the sequencing that is a difficulty but the “making sense” of the underlying narrative. It has been suggested, with some research support (Bruner and Feldman 1993; Losh and Capps 2003), that people with autism struggle with many aspects of narrative: understanding the basic narrative struc-ture of events (steady state, event, restoration of the state marked by a coda); telling

struc-ture of events (steady state, event, restoration of the state marked by a coda); telling the gist of an event rather than verbatim details; understanding different roles within an event; keeping track of protagonists within a story by appropriate pro-noun use; understanding emotional responses of protagonists; understanding agents and inten-tional acts. Reading in autism often emerges through reading instructions in computer games or on videos. However, this ability to read short phrases

reading instructions in computer games or on videos. However, this ability to read short phrases or to memorize large chunks of text is very different from the ability to make sense of longer connected texts such as fictional stories or novels. This is especially true if, as is often the case, there is associated dyslexia in autism. It is paradoxical that individuals with autism may also be hyperlexic, in that they can “read” large chunks of text but in a rote manner, without being able to

in that they can “read” large chunks of text but in a rote manner, without being able to perceive meaning in the text. Less commonly, some people with autism are verbal thinkers and have good verbal ability. For these individuals their verbal ability may help with their understanding of the world. For exam-ple, linguistic structure can help distinguish actual from reported, or imagined, events and this has been shown to be a factor in some able people with autism learning to develop an

and this has been shown to be a factor in some able people with autism learning to develop an understanding of mental states (Theory of Mind). Inasmuch as literature does involve some of the key difficulties in autism, teaching literature can also be seen as an opportunity to address some of these difficul-ties: understanding motivations, intentional actions, and their consequences. In written form, these ideas can be addressed at the child’s own pace, rather than trying to be grasped in

form, these ideas can be addressed at the child’s own pace, rather than trying to be grasped in real-life situations which may pass too quickly and which may be harder to interpret in terms of key events and characters. Literature can provide a structure with which to interpret events and some approaches use written scripts to help the person with autism understand, prepare for, and carry out social actions. When it comes to writing, there may be dyspraxic or other motor or sensory problems

social actions. When it comes to writing, there may be dyspraxic or other motor or sensory problems that hinder the development of handwriting skills. It is useful to learn some basic handwriting skills, where possible, and teachers need to take advice from occupational therapists to look at supports (e.g., in posture, in pencil grips) to make this happen. Since typing or touch screen technology means that “writing” (or at least communicating in a visual form) is more accessible to children

means that “writing” (or at least communicating in a visual form) is more accessible to children even with the most severe motor problems, difficulties in handwriting should not be allowed to hinder the expression of ideas. Such technological solutions have enabled some people with autism to demon-strate their ability to think and to express them-selves, when it would otherwise have been assumed they were incapable of doing so. Using writing (or an equivalent form), children can also be taught

they were incapable of doing so. Using writing (or an equivalent form), children can also be taught skills such as making a précis of a text, which helps them understand how to extract meaning from a text in a very tangible way.

History: Whether or not history presents a problem for people with autism depends on the nature of the curriculum and how it is taught. If it is presented as a list of facts that can be memo-rized, then most people with autism (unless they have severe learning difficulties) will manage this without difficulty. However, unless there are clear rules, it can be more difficult to try to assess possible causes for certain events or, even more problematically, try to imagine alternative out-comes. The

causes for certain events or, even more problematically, try to imagine alternative out-comes. The most difficulties for those with autism, however, are caused by history teaching that requires the pupils to imagine, for example, what it might feel like to have been a Roman soldier on Hadrian’s Wall, or a pilgrim arriving in North America. As with literature, the very fact that history may present some difficulties for pupils with autism can also be seen as an oppor-tunity for teaching. It can be

some difficulties for pupils with autism can also be seen as an oppor-tunity for teaching. It can be a chance to make explicit some of the things that might affect how someone might feel. This allows pupils with autism to learn more about emotions and to develop a cognitive frame for developing empa-thy (or at least, sympathy). This does not lead to typical intuitive empathetic understanding, but research shows that a cognitive approach supported with many examples in practice can provide the

research shows that a cognitive approach supported with many examples in practice can provide the best approach for people with autism to develop some understanding of others (Mesibov 1986; Ozonoff and Miller 1995); the explicit discussion of motivation and the effects of actions in history may provide this.

Geography: Many individuals with autism prefer to be outdoors rather than confined in build-ings (Evans 2015), so they appreciate opportuni-ties to explore their natural environment. For some, this will extend to interest in the geograph-ical features of the outdoors environment and particularly aspects of physical geography. Geo-graphical features of the environment can be explored and explained through laws governing forces of climate, water, volcanoes, particular rock structures, and so on.

through laws governing forces of climate, water, volcanoes, particular rock structures, and so on. All of this can provide a logical way of understanding the physical aspects of the environment, without the need for social understanding. On the other hand, the study of populations in social geography can enable some understanding of groups of people, if not of individuals.

Science: Science (and engineering) is usually considered to be one of the most accessible aca-demic subjects for individuals with autism. People with autism are often, mistakenly, thought to have problems with abstract concepts, which would make the abstract concepts of science difficult to master. However, it is not “abstraction” as an explicit description of a concept that causes prob-lems in autism; rather it is the implicit process of abstraction through which everyday “fuzzy” con-cepts are

rather it is the implicit process of abstraction through which everyday “fuzzy” con-cepts are normally acquired from experience that causes the problems. People with autism therefore have problems with everyday concepts, but scientific concepts do not rely on this process of abstraction; they are defined explicitly by criterial features and so fit the learning style of those with autism. It is the specificity and explicitness of science that makes it an attractive choice for those with autism.

specificity and explicitness of science that makes it an attractive choice for those with autism. However, there can be some difficulties with the scientific process. People with autism find it difficult to tolerate uncertainty so the scientific method of hypothesis testing can be a problem for them. Once again, however, the pro-cess of scientific enquiry can help by specifying the conditions under which facts are established and by being rule governed. Statistics can also help with this understanding

facts are established and by being rule governed. Statistics can also help with this understanding and the acceptance of uncertainty.

Foreign Languages: There is a common view in education that, if there is pressure on the cur-riculum for those with autism because of the need to provide education in social and life skills, then learning a foreign language can be dropped to provide that curricular space. The argument is often made that the person with autism has strug-gled to master his/her first language so it would be a waste of time to attempt to teach them a second language. There may well be individual cases where this is

time to attempt to teach them a second language. There may well be individual cases where this is the correct decision, and certainly curriculum subjects need to be prioritized. But such decisions should always be on an individual basis – not on an assumption that all pupils with autism will struggle with a foreign language. Some may indeed have struggled to acquire their first language and may still have problems with receptive language and with the pragmatic uses of language. A foreign

may still have problems with receptive language and with the pragmatic uses of language. A foreign language, however, is not generally taught in the way that a first language is acquired. Everything is made more explicit, so that the processes and structures of the language are much more apparent to the pupils with autism than the implicit understandings that characterize first language acquisition. It may be the first time that students with autism have understood these aspects of language and

It may be the first time that students with autism have understood these aspects of language and not only will this make the foreign language easier to acquire but may also help with the understanding of their first language. In addition, learning a foreign language in a mainstream school is often the only opportunity given to the pupil to be taught everyday social skills such as greetings, social rules and different language styles, adjusting language to context and useful skills like waiting in

and different language styles, adjusting language to context and useful skills like waiting in restaurants, gaining attention, expressing regret, asking directions, and so on. The fact that these vital social skills are being taught in a foreign language is a minor problem compared with the general failure in mainstream schools to address these important areas of learning at all. Once again, many individ-uals with autism become very interested in, and skilled at, foreign languages and some are

individ-uals with autism become very interested in, and skilled at, foreign languages and some are able to obtain employment through acquiring this aca-demic skill. Few schools remain that teach classical sub-jects such as Ancient Latin and Greek, but such “dead” languages are also often highly appealing to people with autism. These dead languages do not have the pragmatic learning opportunities of modern foreign languages, but they do offer “pure” academic skills. Because these languages are

of modern foreign languages, but they do offer “pure” academic skills. Because these languages are no longer live, they do not vary according to deictic factors like time, place, and person. Thus, they can be learnt as a system, almost divorced from social meaning, and one that remains unaltered over time.

Information Technology: This relatively new academic subject is not universally attractive or accessible to all individuals with autism, but it has made academic study accessible to many people with autism as well as being a useful tool for accessing other parts of the academic curriculum. Computers can provide a patient, controllable, self-paced, and, above all, nonsocial environment for learning and thus provide access to a large part of the academic curriculum. Information technol-ogy can

and thus provide access to a large part of the academic curriculum. Information technol-ogy can be a rigorous academic subject in its own right also and offer a potential vocational oppor-tunity for many individuals with autism.

Psychology: A minority of schools offer psy-chology as an academic subject. Although few people with autism will be suited to a career in psychology (in spite of the fact that some have done so), it can be a valuable subject to study as an academic subject. Knowledge of self and others is typically acquired through natural intuitive routes but difficulties in such routes of acquisition are at the heart of autism. People with autism, therefore, have to learn about themselves and others in an

the heart of autism. People with autism, therefore, have to learn about themselves and others in an academic way, so the opportunity to engage in this systematically through psychology can be very beneficial. Natural understanding will always be superior (faster and able to happen without effort and alongside other cognitive tasks), but academic psychological skills may be the best route to increased understanding in people with autism. There may still need to be support in applying these

increased understanding in people with autism. There may still need to be support in applying these academic skills to real-life understanding of self and others, but it is better than having no way to understand.

Future Directions Technological aids have enabled more individuals with autism gain and demonstrate their potential. This is likely to continue. Technology itself is likely to grow as an academic subject, and there will be more vocational opportunities to develop and apply such technological academic skills. The fact that typical children now also use more technologically driven and explicit ways of learning means that learning styles of students with autism will begin to merge with those of

of learning means that learning styles of students with autism will begin to merge with those of the typical majority of learners. This should aid the development of inclu-sive practices in education. People with autism may always remain at a disadvantage when it comes to understanding and operating in the social world, but they may be at an advantage when it comes to understanding and operating in the technological world. As technology takes over many low-level cognitive skills (storing and

in the technological world. As technology takes over many low-level cognitive skills (storing and manipulating data, for example), there will be increased need for the exer-cise of higher-level academic skills – making sense of the data, problem-solving, and interrogating data in meaningful ways. These are high-level skills but they are teachable, and experience shows that what is clearly (and explicitly) taught can be learnt by people with autism, as long as there are no signif-icant learning

taught can be learnt by people with autism, as long as there are no signif-icant learning or other difficulties. Already it is seen that some academic skills (such as handwriting) have lost some value as other ways of expressing oneself have developed. There may be other academic skills that become redundant, but it is doubtful if humans can flourish and grow without the exercise of some academic skills. It may be that everyone does not need to learn how to be a historian, say, but everyone needs

It may be that everyone does not need to learn how to be a historian, say, but everyone needs to understand about how to find sources, how to make sense of them, and to understand notions of trust and reliability in interpreting data. There will be different ways of teaching such skills, but they will be at least as valuable to children with autism as they will be to all.

See Also ▶Academic Supports ▶Computer-Based Intervention Assistive Technology ▶Education ▶Homework/Assignments, Modifying ▶Inclusion ▶Narrative Assessment ▶Reading ▶School-Aged Children    Definition Academic supports provide students with addi-tional help in specific skill areas or subject areas, such as reading, math, or writing. These may include a small group tutoring session, a test-taking skill program, or other adjustments to the length and difficulty of an assignment, all intended to

skill program, or other adjustments to the length and difficulty of an assignment, all intended to assist students to reach proficiency in an academic area. Though the term academic supports is not used specifically in special education law, it is similar to the term “specially designed instruction,” which is defined in IDEA (Individuals with Dis-abilities Education Act of 2004) as: Adapting, as appropriate to the needs of an eligible child. . .the content, methodology, or delivery of

as appropriate to the needs of an eligible child. . .the content, methodology, or delivery of instruction-i. To address the unique needs of the child that results from the child’s disability; and ii. To ensure access of the child the general cur-riculum, so that the child can meet the educa-tional standards within the jurisdiction of the public agency that applies to all children. [300.39 (b)(3)] Academic supports can also include accommodations and modifications to a student’s scheduling,

Academic supports can also include accommodations and modifications to a student’s scheduling, setting, materials, instruction, and/or student response. Modifications change the con-tent that is being taught and/or what is expected of the student, such as providing a text at a different reading level or offering shorter assignments. Accommodations change only how the informa-tion is received or how the student responds, with-out altering the content difficulty or student expectations.

or how the student responds, with-out altering the content difficulty or student expectations. Accommodations may include pro-viding audiotaped books, allowing answers to be given orally, and using a computer to complete written work. Finally, supplementary aids are an additional source of academic support available for students with disabilities, as described in IDEA. These include assistive technology, such as word processors or communication systems; adapted materials, including audio books

such as word processors or communication systems; adapted materials, including audio books or highlighted notes; and peer tutors.

Historical Background Prior to 1975, most individuals with autism spec-trum disorders (ASD) in the United States were denied academic instruction in the public schools. These individuals were either not educated or were served in private institutions that focused less on academics and more on the reduction of challeng-ing behavior and/or on the development of life skills (e.g., cooking, cleaning). The passage of the Education for All Handicapped Children Act in 1975 (reauthorized as IDEA in

The passage of the Education for All Handicapped Children Act in 1975 (reauthorized as IDEA in 1990 and including students with autism specifically for the first time) guaranteed for the first time that individuals with ASD and other disabilities could access a free and public education (FAPE). This law also requires that schools and families develop an Individualized Education Program (IEP) which clearly outlines the academic supports (e.g., accommodations, modifications, and supplementary aids)

clearly outlines the academic supports (e.g., accommodations, modifications, and supplementary aids) to be pro-vided to the student with ASD. Finally, the law mandates that students with ASD have access to the least restrictive environment (LRE), essentially ensuring that to the maximum extent possible, stu-dents with ASD are educated in the general educa-tion setting with their nondisabled peers. Though the law has now been in place for over 30 years, progress in the education of individuals

Though the law has now been in place for over 30 years, progress in the education of individuals with ASD in the academic domain has been slow. The academic profile of individuals with ASD is complex, and academic skills are often difficult for individuals with ASD to fully demonstrate during assessments and classroom instruction. Historically, most individuals with ASD, as many as 75%, were thought to also have a diag-nosis of mental retardation (Ghaziuddin 2000). Due to better instrumentation

to also have a diag-nosis of mental retardation (Ghaziuddin 2000). Due to better instrumentation and understanding of the learning profiles of individuals with ASD, more recent research indicates that approximately 16–30% of the population with ASD has a comor-bid condition of mental retardation (now termed “intellectual disability” in the United States) (de Bildt et al. 2004). Accurately identifying intellectual disabilities in individuals with ASD has been challenging, as has accurately

intellectual disabilities in individuals with ASD has been challenging, as has accurately indentifying their academic strengths and needs. Individuals with ASD often present an uneven profile of skills, as they may be reading at a very young age (i.e., hyperlexia) but may not be able to describe what they have read or respond verbally to comprehension questions. Similarly, individuals with ASD may have other splinter skills (i.e., a talent or ability in a specific area such as music or calendar

have other splinter skills (i.e., a talent or ability in a specific area such as music or calendar knowledge) that may not translate to other areas such as math or reading. Without an accurate understanding of an individ-ual’s present level of performance in academic domains, practitioners have had difficulty in devel-oping and implementing appropriate academic supports for students on the autism spectrum.

Current Knowledge  The Cognitive Profile of Many Individuals with ASD Research in the last decade focused on the cognitive profile of individuals with ASD has informed the field around important and often essential academic supports designed to benefit students with ASD. Following is a brief summary of the processing style of many on the spectrum as well as the state of academic supports currently in use by individuals with ASD. Lastly, a brief descrip-tion of a number of currently used academic

in use by individuals with ASD. Lastly, a brief descrip-tion of a number of currently used academic supports will be described.

Auditory and Visual Processing: Research indi-cates that individuals with ASD may process audi-tory or linguistic information at a slower rate than their typically developing peers (Cashin and Barker 2009). This auditory processing lag can cause great difficulty during traditional classroom instruction. In addition, research indicates that processing verbal and visual stimuli simulta-neously may also be difficult. Visual processing, however, appears to be intact and in fact, can be a strength

also be difficult. Visual processing, however, appears to be intact and in fact, can be a strength for individuals on the spectrum.

Weak Central Coherence: Individuals with ASD may have difficulty processing incoming information in context, and instead, the specific details of an event or concept are remembered instead of the “big picture.” This piecemeal pro-cessing makes understanding abstract concepts more difficult, as information is stored in chunks without being unified by past experiences or understandings of the world. For example, when recalling a story, individuals with autism are more likely to remember only specific

example, when recalling a story, individuals with autism are more likely to remember only specific details of the story, perhaps names and locations, rather than the main idea of the story and how it may relate to other stories or past experiences (Hill 2004).

Executive Function: “Executive function” is a term used to describe brain functions such as planning, working memory, and flexibility. These functions are often impaired in individuals with ASD, specifically the ability to plan multi-step sequences of events (e.g., steps required to complete a homework project) and to demonstrate mental flexibility (e.g., shift quickly from one idea or plan to another).

Attention and Inhibition: Individuals with ASD may have difficulty orienting, sustaining, and shifting attention to relevant targets (e.g., the teacher or appropriate topic during instruction) (Patten and Watson 2011). Students with ASD may focus on details that are not relevant, such as a pattern of light created by the blinds or the color of the teacher’s shirt, and miss the most meaningful information or content presented. In addition, individuals with ASD may have diffi-culty in managing

information or content presented. In addition, individuals with ASD may have diffi-culty in managing their impulsive behavior (Mesibov et al. 2005).

The State of the Use of Academic Supports Little is known about what types of academic supports are actually in use by students with ASD, as few researchers have investigated this issue. One source of data, however, has provided the field with a snapshot of the accommodations and modifications used by secondary students with ASD. The National Longitudinal Transition Study 2 (NLTS2) provides data on approxi-mately 1,000 students with ASD ages 14–18 enrolled in secondary education settings. The

on approxi-mately 1,000 students with ASD ages 14–18 enrolled in secondary education settings. The data indicates that 91% of students with ASD receive some type of academic support or mod-ification in their academic settings (Newman 2007). The types of supports and the percentage of students with ASD who access those supports are listed in Table 1.

Academic Supports, Table 1 Accommodations and modifications provided to students with autism

|                                            | Percentage | | :----------------------------------------- | :--------- | | Additional time to complete assignments    | 52%        | | More time in taking tests                  | 52%        | | Alternative tests or assessments           | 49%        | | Slower-paced instruction                   | 41%        | | Shorter or different assignments           | 38%        | | Modified tests                              | 33%        | | Modified grading

| 38%        | | Modified tests                              | 33%        | | Modified grading standards                  | 30%        | | Tests read to student                      | 25%        | | Modifications to physical aspects of the classroom | 16%        |  Additional learning supports are provided to 81% of the sample (Newman 2007), and those supports are listed below in Table 2.

Academic Supports, Table 2 Learning supports provided to students with autism  |                                                   | Percentage | | :------------------------------------------------ | :--------- | | Monitoring of progress by special education teacher | 57%        | | A teacher’s aide or instructional assistant         | 55%        | | More frequent feedback                            | 32%        | | Learning strategies/study skills assistance       | 22%        | | A peer

| 32%        | | Learning strategies/study skills assistance       | 22%        | | A peer tutor                                      | 14%        | | Self-advocacy training                            | 13%        | | Tutoring by an adult                              | 9%         | | A reader or interpreter                           | 6%         |  Finally, 57% of the population used some sort of technology aid to support their academic instruction. See Table 3.

Academic Supports, Table 3 Technology aids provided to students with autism  |                                                    | Percentage | | :------------------------------------------------- | :--------- | | A calculator for activities not allowed other students | 28%        | | Computer software designed for students with disabilities | 23%        | | A computer for activities not allowed other students | 16%        | | Communication aids                                 | 16%        |

other students | 16%        | | Communication aids                                 | 16%        | | Computer hardware adapted for special needs        | 8%         | | Books on tape                                      | 8%         |  Description of Commonly Used Academic Supports with Students with ASD As practitioners gain a better understanding of the cognitive profile of the individuals with ASD that they serve, they are more likely to select meaningful and successful academic supports.

ASD that they serve, they are more likely to select meaningful and successful academic supports. Below are some of the most commonly used supports designed to match the academic content and expectations to the strengths and needs of individ-uals with ASD.

Additional Time: Providing extra time for stu-dents with ASD to complete assignments or tests is a common academic support and is recommend for students who have auditory processing lags as described above, as well as for students who may have anxiety, a common co-occurring condition. The time constraints posed by testing protocols may prompt higher levels of anxiety, thus reduc-ing academic success.

Visual Supports: Visuals are a common aca-demic support used by individuals with ASD. Visual supports include any concrete cue that sup-ports verbal explanations and directions provided by teachers. These include diagrams, pictures, objects to hold, graphic organizers, concept maps, outlines, flowcharts, checklists, and schedules. Descriptions of abstract concepts should include a hands-on and realistic explanation and application, including a visual representation. Students with ASD may benefit

explanation and application, including a visual representation. Students with ASD may benefit from audio recording class lec-tures and then later transcribing them or using a peer/peer tutor to assist with note-taking. Highlighting text is also a helpful visual support, as students can then clearly “see” what concepts are important. Classroom rules and expectations should also be presented to students with ASD visually to ensure their understanding.

Organizational Supports: Both the instruction and environment should be organized for students with ASD. Assignments should be broken down into clear smaller steps (i.e., task analysis), and those steps may be written or visually represented clearly on a “to-do” list. Feedback and redirection from teachers should be frequent to ensure task completion. Classrooms should be well organized and free of distracters to assist in maintaining the attention of the students with ASD. Establishing a

free of distracters to assist in maintaining the attention of the students with ASD. Establishing a color-coded folder or filing system for the stu-dent’s desk or locker may also assist the student in competing and turning in academic assignments.

Computer-Assisted Instruction: Using com-puters to present academic materials to students with ASD may be beneficial for several reasons, including the increased predictability, frequent feedback and reinforcement, and the limited need for social interaction; another deficit are for students with ASD. Computer-based teaching has been proven to promote achievement in math, spelling, literacy, and problem-solving.

Assistive Technology: Technology can be used as an academic support in a number of other ways including an organizational tool (e.g., using a per-sonal digital assistant to serve as a reminder or provide a to-do list), a teaching tool (e.g., using video to teach a specific academic behavior or skill), a supplement to instruction (e.g., student lis-tens to a book on tape while the class reads it aloud), a communication tool (e.g., a nonverbal student can indicate the correct answer using a

it aloud), a communication tool (e.g., a nonverbal student can indicate the correct answer using a communication device), or a basic support (e.g., a calculator).

Strategy Instruction: Learning strategy instruc-tion provides step-by-step processes for students to follow in classroom settings and situations. For example, individuals with ASD may be taught specific strategies around test-taking, such as how to read instructions, how to respond appro-priately (e.g., filling in “bubbles”), and how to reduce anxiety during test-taking. Strategy instruction can also be used to help students with ASD take notes during a lecture, complete large projects such as a

be used to help students with ASD take notes during a lecture, complete large projects such as a term paper, and write an essay. These strategies have been used with students with learning disabilities with great success and have recently been applied to students with ASD (Songlee et al. 2008).

Attention and Motivation Supports: Several sup-ports can contribute to an increased ability to attend to and successfully complete academic tasks. A self-monitoring procedure teaches individuals with ASD to observe their own attending behavior, compare it with predetermined models of behavior (i.e., attending to task), and record if their behavior matches the desired example. Allowing students to choose the sequence in which activities are com-pleted as well as the stimulus used in activities

choose the sequence in which activities are com-pleted as well as the stimulus used in activities (e.g., choose what color marker to use) is also a proven academic support for students with ASD. Building academic activities around the special interest of a student with ASD can be helpful to increase moti-vation, as can allowing access to highly preferred materials after the completion of academic work. Finally, pairing nonpreferred academic tasks with preferred academic tasks has been shown to

work. Finally, pairing nonpreferred academic tasks with preferred academic tasks has been shown to increase task completion as well.

Academic Subject-Specific Supports Writing: Writing is often difficult for individ-uals on the spectrum, likely due to visual-motor and coordination challenges. These may be reduced or alleviated through the use of several supplementary aids such as word processors, voice recognition software, special pencils or grips, or slant boards (Heflin and Alaimo 2007). Teachers may offer reduced writing assignments or allow students to produce outlines rather than lengthier written assignments. Students

or allow students to produce outlines rather than lengthier written assignments. Students may also use a note-taker or scribe to assist in reducing the writing load. Beyond the physical difficulties of writing, the production of written text can be difficult for students with ASD for other reasons, including organizational difficulties and chal-lenges in developing ideas. Academic supports include the use of graphic organizers, planning charts, writing prompts, a word bank, and/or a story grammar

use of graphic organizers, planning charts, writing prompts, a word bank, and/or a story grammar map.

Reading: A number of academic supports have been identified to assist in the development of literacy skills. These include several discussed previously, including graphic organizers, multi-media programs, strategy instruction, and highly structured direct instruction (Chiang and Lin 2007). In addition, cooperative groups, one-to-one instruction, interactive books, peer/class-wide tutoring, and flash cards have proven to be effective academic supports in enhancing literacy skills. Reading

and flash cards have proven to be effective academic supports in enhancing literacy skills. Reading comprehension can prove espe-cially difficult for students on the spectrum, as broad themes, story meaning, and character moti-vation may be missed, though recall of specific details and facts may be intact.

Math: Computational skills have generally been a strength for students with ASD; however, diffi-culty often arises in applying these skills to real tasks or problem-solving (Aspy and Grossman 2007). Academic supports to assist in skill devel-opment in this area include the use of practical examples with pictures or diagrams to clarify con-cepts, the use of visual and tactile cues such as TouchMath, use of graph paper during computation activities to help students organize their problems,

use of graph paper during computation activities to help students organize their problems, increased time to complete math tasks, use of cal-culators and computer programs, and peer tutoring.

Future Directions Additional research is needed in the area of aca-demic supports, including a better understanding of what supports are currently in place for elementary-aged students and how effective the supports are in increasing student engagement and academic suc-cess. Matching a support with the cognitive strengths and needs of individual students would be most effective, but additional study is required to determine how to accurately assess the academic skills of students with ASD.

study is required to determine how to accurately assess the academic skills of students with ASD. This is important work, though challenging, as our understanding of the cognitive profile of students with ASD is changing and evolving as more sophisticated brain research is conducted, including the use of func-tional MRIs. Additionally, the prevalence of stu-dents with ASD appears to be increasing (Kim et al. 2011), which increases the likelihood that all teachers, both special and general

(Kim et al. 2011), which increases the likelihood that all teachers, both special and general education, will be serving students with ASD, thus implementing a number of academic supports. This requires addi-tional staff training, both for in-service and pre-service teachers, as staff must appropriately implement supports determined by the IEP team. Finally, the use of personal and portable technol-ogy with individuals with ASD is on the rise (e.g., iPad, iPod, personal digital assistants,

with individuals with ASD is on the rise (e.g., iPad, iPod, personal digital assistants, communica-tion devices). It is likely that these devices will serve as academic supports for individuals with ASD, as they can provide visual supports (e.g., graphic organizers, video clips), organizational supports (e.g., to-do lists), strategy instruction (e.g., provide step-by-step cues or directions), and motivational supports (e.g., students with ASD are often attracted to the use of technology).

and motivational supports (e.g., students with ASD are often attracted to the use of technology). Further research on the efficacy of personal technology as an academic support is warranted.

See Also ▶Academic Skills ▶Computer-Based Intervention Assistive Technology ▶Individual Education Plan ▶Individuals with Disabilities Education Act (IDEA) ▶Modified Testing ▶Self-management Interventions ▶Visual Supports    Definition The diagnostic accuracy of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord et al. 2012), with adults who present with serious mental illness (e.g., psychosis), chronic mental health problems, and/or multiple comorbid conditions. Most

(e.g., psychosis), chronic mental health problems, and/or multiple comorbid conditions. Most autistic adults have at least one co-occurring psychiatric condition (e.g., Buck et al. 2014), and overlapping symptoms can make diagnosis difficult. Clinicians need assessment tools that accurately distinguish autism spectrum disorder (ASD) from other psychiatric disorders in adulthood. The ADOS-2 Module 4 is considered a “gold-standard” instrument for collecting standard-ized and objective information

4 is considered a “gold-standard” instrument for collecting standard-ized and objective information about social com-munication skills, restricted interests, and repetitive behaviors in adults. It is a widely used, semi-structured assessment tool that allows systematic evaluation of the presence of ASD symptoms. Although the ADOS-2 shows good sensitivity and specificity in university- and lab-based settings (Hus and Lord 2014; Pugliese et al. 2015), it has rarely been studied in community

settings (Hus and Lord 2014; Pugliese et al. 2015), it has rarely been studied in community clinics that serve a more psychiatrically impaired population. In community clinics, ruling out psychosis is likely an important component of an ASD evaluation. Although distinct in many ways, there are clear areas of symptom overlap between psychosis and ASD (Chisholm et al. 2015; King and Lord 2011). This is particularly true for the negative symptoms of psychosis (e.g., affective flattening, poverty of

is particularly true for the negative symptoms of psychosis (e.g., affective flattening, poverty of speech, social withdrawal), which are similar to the core social communica-tion impairments in ASD. Three studies have shown that Module 4 may not perform well in differentiating between ASD and psychosis. Bastiaansen et al. (2011) found that the ADOS domain and total scores did not significantly differ between autistic adults and adults with schizophrenia using the original algo-rithm. The Module

between autistic adults and adults with schizophrenia using the original algo-rithm. The Module 4 only correctly classified 74% of cases, with a sensitivity of 61% and specificity of 82%. Using the same sample, de Bildt et al. (2016) applied the revised Module 4 algorithm (Hus and Lord 2014) and also found that the ADOS did not discriminate well between ASD and schizophrenia, with a sensitivity of 61% and specificity of 50%. Bastiaansen et al. (2011), how-ever, found three ADOS items on which

of 61% and specificity of 50%. Bastiaansen et al. (2011), how-ever, found three ADOS items on which autistic adults scored significantly higher than adults with schizophrenia: stereotyped language, quality of social response, and overall quality of rapport. In a separate sample of adults receiving community mental health services (n ¼ 75), the ADOS-2 accurately identified all six autistic adults (Maddox et al. 2017). However, there was a high rate of false positives, with a particular limitation

et al. 2017). However, there was a high rate of false positives, with a particular limitation in accurately discriminating between ASD and psychosis. All 21 of the false positive cases had a lifetime history of psychosis symptoms. Of the 57 participants with psychosis, 37% exceeded the clinical cut-off score on the ADOS-2. Elevated ADOS-2 scores in the false positive group were driven primarily by high Social Communication domain scores, but not by high Restricted Inter-ests/Repetitive

by high Social Communication domain scores, but not by high Restricted Inter-ests/Repetitive Behaviors domain scores. This finding is likely due to the overlapping nature of the negative symptoms of psychosis and some core ASD symptoms (e.g., flat affect, limited con-versation, reduced eye contact). It is important for clinicians and researchers to remember that prominent social communication difficulties are not specific to ASD, particularly in a clinically complex setting such as community

difficulties are not specific to ASD, particularly in a clinically complex setting such as community clinics, where many patients may present with impaired social communication skills. Module 4 of the ADOS-2 provides important information about current social communication skills, restricted interests, and repetitive behaviors. However, the ADOS-2 should be used with cau-tion as a diagnostic instrument with adults, partic-ularly when the differential diagnosis includes the possibility of

instrument with adults, partic-ularly when the differential diagnosis includes the possibility of psychosis.

See Also ▶Bias in Assessment Instruments for Autism ▶Clinical Assessment ▶Mental Health and ASD ▶Psychotic Symptoms in Autism ▶Service Utilization in Autism  Acetylcholine: 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 ACh;

Molecular, Cellular, and Developmental Biology, Yale University, New Haven, CT, USA  Synonyms ACh; Cholinergic  Definition Acetylcholine (ACh) is a neurotransmitter critical in an individual’s ability to assess their surround-ings and respond accordingly. More specifically, ACh functions to evaluate the potential reward and/or threat in a certain stimuli or environmental change and act on it. With roles in regulating attention, cognitive flexibility, social interactions, and stereotypical

With roles in regulating attention, cognitive flexibility, social interactions, and stereotypical behaviors, ACh has been heavily implicated in autism. ASD patients show unusually sized, numbered, and structured neu-rons in the acetylcholine output centers of the basal forebrain as well as decreased concentra-tions of choline, a precursor of ACh. Low levels of choline have also been correlated with autism severity. Postmortem studies reveal a reduction of ACh receptor and receptor subunits. At

autism severity. Postmortem studies reveal a reduction of ACh receptor and receptor subunits. At the genetic level, mutations and duplications in genes encoding various ACh receptor subunits have been found in ASD patients. Furthermore, muta-genesis, inhibition, and/or deletion of various ACh receptor subunit-encoding genes as well as lesions in ACh-containing cells leads to autistic-like behaviors in rodents. Many of these disturbances in ACh neurotransmission can have direct conse-quences on

in rodents. Many of these disturbances in ACh neurotransmission can have direct conse-quences on synaptic plasticity, a process key in learning and memory. Finally, apart from its direct consequences, ACh also plays an indirect role in the modulation of the balance between excitatory and inhibitory neurons. Perturbations in this bal-ance are hypothesized to contribute greatly to path-ogenesis of autism spectrum disorders. No differences have been reported in choline acetyltransferase, involved

autism spectrum disorders. No differences have been reported in choline acetyltransferase, involved in the formation of ace-tylcholine, or acetylcholinesterase, involved in the degradation of acetylcholine, activity between ASD patients and unaffected individuals.

Definition Achievement tests are designed to assess an indi-vidual’s competencies in relation to scholastic material that she/he has been expected to be exposed to in school, home, and community set-tings (Stetson et al. 2001). Achievement tests are different from intelligence tests. Achievement tests are designed to measure mastery of a specific subject, or subjects, such as reading ability, num-ber fluency, and scientific knowledge; whereas, intelligence tests are designed to measure both

num-ber fluency, and scientific knowledge; whereas, intelligence tests are designed to measure both novel problem-solving abilities and stored knowl-edge (Stedman 2006). Typically, achievement tests are administered in the school setting, as opposed to in mental health clinics (Klin et al. 2005).

Historical Background Achievement testing has been respected as an accurate tool of academic attainment since 1914 when the Department of Superintendence of the National Education Association officially adopted a favorable view toward educational assessment (Levine 1976), another phrase for achievement testing. Achievement testing was not held in high regard until it was identified as a political tool that both sides, both educators and policymakers, could use to pursue their own inter-ests.

tool that both sides, both educators and policymakers, could use to pursue their own inter-ests. However, the origins of achievement testing date back to 1903 when Edward Lee Thorndike and his students developed the Comprehension, Arithmetic, Vocabulary, and Direction following test, better known as the CAVD. Thorndike believed that these four domains were four of the most important dimensions of intellect (Thorndike 1949). In addition to developing four distinct subtests to assess intellect,

intellect (Thorndike 1949). In addition to developing four distinct subtests to assess intellect, Thorndike developed scales for the CAVD. While Thorndike was a frontrunner in the development of the achievement test he was primarily interested in measurement of achievement as a utility to estab-lish psychology as a science (Levine 1976). Achievement tests have come to be critical in the measurement of elementary, middle, and high school students. These tests are used in all states to assess

of elementary, middle, and high school students. These tests are used in all states to assess both a student’s competency and a school’s success. Achievement testing is especially impor-tant for high school students hoping to gain entry into college. Lastly, used clinically, achievement tests are administered on a case-by-case basis to identify strengths and weaknesses for academic planning. The achievement test was revolutionized dur-ing the late 1940s and the early 1950s when Henry Chauncey

achievement test was revolutionized dur-ing the late 1940s and the early 1950s when Henry Chauncey developed the Census of Abilities. The Census of Abilities was the first test that the Edu-cational Testing Service published, with Chauncey as the first president. Chauncey’s goal in creating the first test of achievement was to be able to assess the strengths of every member of society and to utilize these strengths in determin-ing each person’s role in society (Lemann 2000). While this ideology

these strengths in determin-ing each person’s role in society (Lemann 2000). While this ideology would certainly be considered problematic today, the remnants of the Census of Abilities still exist in the form of the Scholastic Aptitude Test, better known as the SAT. The SAT was one of the first standardized tests to assess individual competencies in the subject areas of reading, writing, and math and significantly changed the procedure in which students are selected for admission to university.

and significantly changed the procedure in which students are selected for admission to university. Psychologists have been aware of differences between socioeconomic status and race (which are often confounded in the US context), since the beginning of the development of these mea-sures. However, when Alfred Binet determined that significant differences in level of academic functioning existed across different social classes, this information was used to legitimatize different educational

across different social classes, this information was used to legitimatize different educational experiences for different social clas-ses, as opposed to calling to the need for more equitable educational experiences for children across economic background (Levine 1976). Early achievement test findings were also used to discriminate against other marginalized groups such as racial minorities and immigrants deeming them incompetent (Levine 1976). This pattern of discrimination against lower

and immigrants deeming them incompetent (Levine 1976). This pattern of discrimination against lower social classes and marginalized groups continued into the late 1970s, and to some extent still affects minorities and individuals of lower socioeco-nomic status today. For example, the effects of summer vacation reading recognition regression have been found to be significant among lower-class students, whereas, middle class students saw improvement in this subtest following summer vacations

students, whereas, middle class students saw improvement in this subtest following summer vacations (Cooper et al. 1996). It has been found that schooling improves achievement and that highly effective schooling raises achievement more. Until recently, achieve-ment testing had been thought to reflect intelli-gence and the belief was that the influence of schooling was nonsignificant (Hansen et al. 2004). This new knowledge has many implica-tions for all students, particularly those with some

al. 2004). This new knowledge has many implica-tions for all students, particularly those with some degree of learning difficulty. This new research indicates that quality and fit of schooling could be significant in a child’s achievement score.

Current Knowledge Two types of achievement tests are generally employed: screening for academic delays/deficits and comprehensive tests to characterize profiles of academic achievement functioning. Screening tests are brief and typically contain only one sub-test, or a set of questions, for each subject covered. Comprehensive tests utilize more than one subtest for each subject area and generally cover more depth, often in the service of determining appro-priate intervention services. Both

cover more depth, often in the service of determining appro-priate intervention services. Both screening and comprehensive achievement tests routinely assess reading, writing, and mathematics. Screening tests are generally short and easier to score. This makes them a useful tool to assess whether or not gaps exist within an individual’s educational development and prompt whether or not further comprehensive testing may be needed. The Wide Range Achievement Test-4 and the Wechsler Individual

comprehensive testing may be needed. The Wide Range Achievement Test-4 and the Wechsler Individual Achievement Test-Screener are two commonly used screening tests that have one subtest each of reading, math, and spelling. Comprehensive tests assess at least three sub-ject areas typically taught in schools, include at least two different subtests from each subject area, and assess both high and lower levels of cognitive ability within each subject area (Stetson et al. 2001). A commonly used

lower levels of cognitive ability within each subject area (Stetson et al. 2001). A commonly used comprehensive test is the Wechsler Individual Achievement Test-Comprehensive. A common achievement test used with individuals with an Autism Spectrum Disorder (ASD) is the Woodcock-Johnson III Tests of Achievement. The Woodcock-Johnson III contains 23 different achievement scales or subtests. In addition to screening and comprehensive achievement tests, there are single-subject versus

In addition to screening and comprehensive achievement tests, there are single-subject versus multiple-subject achievement tests. Single-subject tests include several subtests designed to explore an individual’s competency within one subject area and multiple-subject tests explore several subject areas with one or more subtest (e.g., reading, writing, and mathematics). Educators and school psychologists often use multiple-subject tests more often than single-subject tests because they assess at

often use multiple-subject tests more often than single-subject tests because they assess at least three school subjects and provide preliminary analysis of an individual’s overall level of academic achievement. In general, it is recommended that multiple-subject tests be used first in order to assess areas of strengths and weaknesses. Single-subject tests should then be used to further assess an individual’s competency in a specific subject area (Stetson et al. 2001). Single-subject tests allow

individual’s competency in a specific subject area (Stetson et al. 2001). Single-subject tests allow an assessor to gain a more in-depth understanding of an individual’s competency. For example, a single-subject test, such as the Woodcock Reading Mastery Tests – III, includes subtests such as letter identification, word identification, word attack, word compre-hension, and passage comprehension. Single-subject tests may be particularly useful in the development of an individualized education plan

tests may be particularly useful in the development of an individualized education plan (IEP) given that they provide detailed information regarding an individual’s strengths and weak-nesses in a particular subject, thus allowing for a more exact IEP. Generally, achievement tests are organized with lower-level cognitive tasks first and increase the cognitive difficulty as the task progresses. Achievement tests are organized in this way because the lower the level assessed the less reliable one

tests are organized in this way because the lower the level assessed the less reliable one can predict performance on higher-level skills. Comprehensive tests have several subtests within each subject area and therefore allow sev-eral distinct levels of cognition to be assessed, thus allowing a more accurate prediction of achievement. Screener tests, in large part due to only having one subtest per subject, test lower levels of cognition and therefore do not predict achievement as well as

per subject, test lower levels of cognition and therefore do not predict achievement as well as comprehensive tests (Stetson et al. 2001). A note on seasonal norms: achievement tests that include seasonal norms need to be paid close attention to. The difference in standard score of just 1 day can be significant in some tests (Stetson et al. 2001). Additionally, it has been found that over summer vacation, achievement test scores tend to regress. Of the three core subjects assessed (reading,

vacation, achievement test scores tend to regress. Of the three core subjects assessed (reading, writing, and mathematics), it was found that math skills seemed to deteriorate the most (Cooper et al. 1996). When completing achievement testing with an individual who has an ASD, choosing the right achievement test should depend on the specific needs of the individual. For example, some indi-viduals with an ASD struggle with maintaining their attention and should be administered a screening test to

an ASD struggle with maintaining their attention and should be administered a screening test to maximize concentrated perfor-mance (Koegel et al. 1997). Whereas, other indi-viduals with an ASD may be able to focus for long periods of time but may have considerable gaps in knowledge and a more comprehensive test may be the more appropriate choice (Koegel et al. 1997). Tests that include visual stimuli and that do not require long verbal responses may also be most appropriate for some individuals

and that do not require long verbal responses may also be most appropriate for some individuals with ASD. For example, the Peabody Individual Achievement Test – Revised (PIAT-R) touts a multiple choice format that is designed to be easy to use with individuals having severe disabilities. While the simple administration and multiple choice responses certainly make the PIAT-R a desirable choice for testing individuals with severe disabil-ity, it should be noted that this test was developed with a

testing individuals with severe disabil-ity, it should be noted that this test was developed with a typical population and therefore the norms do not address the unique needs of individual special needs populations.

Future Directions While considerable gains have been made in the development of achievement tests since they were first developed in the early 1900s, it is imperative that research and development of new tests continue to create measures that represent the abilities of all individuals. When considering the development of new measures, it is important to take into consider-ation the needs of the groups that most often use achievement tests, aside from those used in state and nationwide testing.

that most often use achievement tests, aside from those used in state and nationwide testing. Additionally, future edi-tions of achievement tests should strive to include norms for different populations. It would be espe-cially useful, given the number of individuals affected, if norms for the ASD population were provided. These norms would provide helpful insight to providers and parents regarding what is typical and could be expected of children in this population over the course of their

what is typical and could be expected of children in this population over the course of their development.

See Also ▶Educational Testing ▶Peabody Individual Achievement Test, Revised ▶Psychological Assessment ▶Wechsler Preschool and Primary Scale of Intelligence ▶Wide Range Assessment of Memory and Learning (WRAML) ▶Woodcock-Johnson Cognitive and Achieve-ment Batteries   Achieving a Better Life Experience Savings Account (ABLE Savings Account, ABLE Account, 529A Savings Plan, and 529A Account)

Annemarie M. Kelly and Christina N. Marsack-Topolewski College of Health and Human Services, Eastern Michigan University, Ypsilanti, MI, USA  Definition An Achieving a Better Life Experience account (ABLE account) is a tax-advantaged savings account for qualified individuals with disabilities (often referred to as “accountholders” or “desig-nated beneficiaries”) (Pub. L. No. 113–295 2014). ABLE accounts allow beneficiaries to save funds without losing their eligibility for state and federal

accounts allow beneficiaries to save funds without losing their eligibility for state and federal government benefits programs such as Medicare, Medicaid, Social Security, Supplemental Security Income (SSI), and Supplemental Security Disability Income (SSDI). ABLE account funds can be used for a broad range of health, wellness, and living expenses to support the beneficiary. ABLE accounts are sometimes referred to as “529A accounts” or “529A Savings Plans” because the ABLE Act amends Section 529

referred to as “529A accounts” or “529A Savings Plans” because the ABLE Act amends Section 529 of the US Internal Revenue Code.

History of ABLE Accounts The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act was signed into law on December 19, 2014. The US Congress has since amended the original ABLE Act by passing other legislation including the Consolidated Appropriations Act of 2016 and Tax Cuts and Jobs Act of 2017. The Consolidated Appropria-tions Act allowed qualified beneficiaries to enroll in any ABLE savings program in any state, not just their state of residence (Pub. L. No 114–113 2016). The Tax

savings program in any state, not just their state of residence (Pub. L. No 114–113 2016). The Tax Cuts and Jobs Act made three key changes to ABLE account law by: (1) increas-ing the yearly contribution amounts allowed from accountholders who are employed (subject to IRS rules); (2) allowing a qualified ABLE accountholder to claim a Retirement Savings Contributions Credit (Saver’s Credit); and (3) allowing funds saved in a government-sponsored college tuition savings account (“529 account”) to

allowing funds saved in a government-sponsored college tuition savings account (“529 account”) to roll into a ABLE account (Pub. L. No. 115–9 2017).

Principles of an ABLE Account An ABLE account can be a useful special needs planning tool for individuals with autism spectrum disorder (ASD) and their caregivers (US Senate Committee on Finance 2014). See Table 1, Four key benefits of an ABLE account. ABLE accounts were first created in the United States under the Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014 (Pub. L. No. 113–295) and are governed by federal law, the laws of the individual states, and Internal Revenue Service

and are governed by federal law, the laws of the individual states, and Internal Revenue Service (IRS) administrative rules. Under federal law, ABLE account savings are excluded from the accountholder’s income for the tax year (January 1 through December 31). Accountholders will face taxes and penalty fees if they deposit more than the federal gift tax limit into an ABLE account during a tax year (e.g., $15,000 in 2020 and adjusted periodically by the IRS to account for inflation).

a tax year (e.g., $15,000 in 2020 and adjusted periodically by the IRS to account for inflation). Accountholders who are employed can contribute funds beyond the federal gift tax limit – these amounts depend on the accountholder’s income totals according to IRS rules (US IRS 2020b). ABLE account savings are designed to supplement the benefits from private healthcare insur-ance and government healthcare programs. Importantly, ABLE accounts allow beneficiaries to save funds without losing their

programs. Importantly, ABLE accounts allow beneficiaries to save funds without losing their eligibility for state and federal government benefits programs from Medicare, Medicaid, and the Social Security Administration (SSA). If ABLE accountholders maintain a total account balance of no more than $100,000, they can continue to receive care and services from their government means-tested benefits without paying additional out-of-pocket costs (US Social Security Administration 2020). ABLE account

paying additional out-of-pocket costs (US Social Security Administration 2020). ABLE account balances in excess of this thresh-old are considered “excess resources” and must be spent down before the accountholder can receive additional benefits that are paid for by the government. The ABLE Act specifies that an accountholder’s government benefits “shall not be terminated, but shall be suspended” if there are excess resources in his or her ABLE account (Pub. L. No. 113–295 2014). Under current

if there are excess resources in his or her ABLE account (Pub. L. No. 113–295 2014). Under current laws, many individuals with serious disabilities do not qualify for ABLE accounts. To enroll in an ABLE account program in any state, individuals must have a qualified disability that occurred before age 26. Provided you satisfy the age requirement, you are automat-ically eligible to establish an ABLE account if you are a recipient of SSI and/or SSDI benefits. You also can become eligible to open an

account if you are a recipient of SSI and/or SSDI benefits. You also can become eligible to open an ABLE account if you can satisfy each of the following criteria: (a) the above-mentioned age requirement, (b) the SSA’s definition and criteria for a disability with significant functional limitations, and (c) receive a letter from a licensed physician that certifies your disability diagnosis. Any person, for-profit business, or non-profit organization can make a deposit into an ABLE account. Several

for-profit business, or non-profit organization can make a deposit into an ABLE account. Several states offer tax deduction incentives to encourage friends, family, and crowdsourcing initiatives to fund ABLE accounts. Certain ABLE account contributions can qualify as income tax deductions for ABLE accountholders who are employed (US Internal Revenue Service 2020a). Each state allows online applications to open an ABLE account. Users can monitor their ABLE savings through their ABLE program’s

to open an ABLE account. Users can monitor their ABLE savings through their ABLE program’s website and make contributions or withdrawals online. A beneficiary’s parent, legal guardian, legal con-servator, or Power of Attorney agent can assist in creating an ABLE account. Beneficiaries can set up their ABLE accounts directly if they are age 18 or older and have “legally capacity” (Garner 2019). For purposes of entering into any ABLE account contractual agreement, an accountholder’s legal capacity

purposes of entering into any ABLE account contractual agreement, an accountholder’s legal capacity is defined as the ability to understand the fundamental benefits, risks, and effect of entering into the agreement (Parker 2016). Individuals do not have legal capacity when a judge rules that they are entirely incapable of managing financial or personal affairs (National Council on Disability 2018). A person who lacks legal capacity is unable to fully safeguard himself or herself against harm to

A person who lacks legal capacity is unable to fully safeguard himself or herself against harm to self, wealth, and/or property (see also Kohn et al. 2013 regarding the growing legal and medical field of “supported decision-making”).

Achieving a Better Life Experience Savings Account (ABLE Savings Account, ABLE Account, 529A Savings Plan, and 529A Account), Table 1 Four key benefits of an ABLE account

| Item number | Summary                       | Benefit description

|

| :---------- | :---------------------------- |

:------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

------------------------------------------------------------------------------------------------------------------------------------------------------------------------

|

| 1           | Tax-free savings              | Savings in an ABLE account are not considered part of the accountholder’s income for the tax year (January 1 through December 31).

|

| 2           | Protected eligibility for government benefits | Savings in an ABLE account cannot cause the accountholder to terminate their eligibility for state and federal government benefits programs.

|

| 3           | Many possible uses for “qualified disability expenses” | ABLE account funds can be used for a broad range of costs that support the beneficiary. Qualified disability expenses include: education, housing, transportation, employment training/support, assistive technology/services, health, healthcare services not covered by private insurance or government programs, wellness goods/services, financial planning, financial management, legal assistance, funeral/burial costs, and basic living

financial planning, financial management, legal assistance, funeral/burial costs, and basic living expenses.                                                                                                            |

| 4           | Tax deduction incentives (for employed accountholders and for account contributors in certain states) | Any person or organization can contribute to an ABLE account. Several state ABLE account programs offer tax deduction incentives to encourage friends, family, and others to contribute funds to ABLE accounts. Certain ABLE account contributions can qualify as tax deductions for ABLE accountholders who are employed. |

Qualified Disability Expenses for an ABLE Account The funds in ABLE accounts can only be spent on expenses that support the accountholder (Morris et al. 2016). Under the guidelines set forth in the federal ABLE Act statute, these are called “qualified disability expenses” (QDE). Federal law defines several wide-ranging catego-ries for QDE as follows: [A]ny expenses related to the eligible individual’s blindness or disability which are made for the ben-efit of an eligible individual who is the

blindness or disability which are made for the ben-efit of an eligible individual who is the designated beneficiary [accountholder], including the follow-ing expenses: education, housing, transportation, employment training and support, assistive technol-ogy and personal support services, health, preven-tion and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses. . . consistent with the

oversight and monitoring, funeral and burial expenses, and other expenses. . . consistent with the purposes of this section [and in support of the accountholder] (Pub. L. No. 113–295). QDE for ABLE accounts are broadly defined and not tied to medical necessity. This is a stark departure from other federal healthcare spending requirements, such as Medicare’s payments for healthcare costs that are “reasonable and medically necessary” for the diagnosis or treatment of illness or injury (Stein and

“reasonable and medically necessary” for the diagnosis or treatment of illness or injury (Stein and Lipschutz 2019). In contrast, the only condition for spending on QDE with an ABLE account is that the expense loosely relate back to the accountholder’s disability. Best practices for documenting QDE include keeping a Qualified Expenses Withdrawal Log (e.g., Iowa IAble 2020).

Possible Challenges with an ABLE Account When either considering or utilizing ABLE accounts, individuals should take care to weigh all potential challenges and benefits (Hershey et al. 2017a). See Table 2, Six key challenges of an ABLE Account. Users must take care to remain informed about each tax year’s annual contribu-tion limit (set by the federal gift tax limit and IRS rules) and their maximum account balance limit (which varies according to each state’s law). Account contributions that

account balance limit (which varies according to each state’s law). Account contributions that are in excess of annual limits are subject to penalty taxes. The total account balance limit for an ABLE account is set by individual state programs and modeled after state limits for college tuition savings accounts (also referred to as “529 accounts”). In most states, the total account limit for ABLE sav-ings is $300,000 or higher. Though individuals can-not deposit a total amount into their ABLE

sav-ings is $300,000 or higher. Though individuals can-not deposit a total amount into their ABLE account over time that exceeds their account balance limit, it is impractical for most accountholders to save more than $100,000 in their ABLE accounts – ABLE accountholders with savings in excess of $100,000 receive a suspension of their government benefits. In sum, experts recommend that ABLE accountholders keep their balances at $100,000 or lower at all times to avoid the out-of-pocket costs

keep their balances at $100,000 or lower at all times to avoid the out-of-pocket costs associated with suspended government benefits. After an accountholder has passed away, most state governments will claim and collect all of the funds that remain in an ABLE account. This pro-cess is often referred to as the government’s “estate recovery.” Under these laws, a state is allowed to recoup expenses that were paid in the form of government benefits to the accountholder during his or her lifetime.

that were paid in the form of government benefits to the accountholder during his or her lifetime. Most ABLE accountholders should consider keeping large savings amounts inside a special needs trust (SNT), a legal instrument which is typically shielded from government collections after the beneficiary’s death (Hershey et al. 2017b). Unlike most ABLE accounts, funds protected in an SNT can be transferred to another person or charity organization as part of a beneficiary’s estate through a Last Will

to another person or charity organization as part of a beneficiary’s estate through a Last Will and Testament (Andersen and Gary 2018).

Achieving a Better Life Experience Savings Account (ABLE Savings Account, ABLE Account, 529A Savings Plan, and 529A Account), Table 2 Six key challenges of an ABLE account

| Item number | Summary                                                                  | Challenge description

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| :---------- | :----------------------------------------------------------------------- |

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| 1           | Maximum account balance limitations                                      | The total account balance limit for an ABLE account is set by individual state programs and modeled after state limits for college tuition savings accounts (529 accounts). Many states have set the total account limit for ABLE savings at rates of $300,000 or higher.

|

| 2           | Annual contribution limitations                                          | Deposits into an ABLE account cannot exceed the threshold of the federal gift tax limit during each tax year (e.g., $15,000 in 2020). Account contributions that are in excess of federal limits are subject to a penalty tax.

|

| 3           | Limited free assistance for account management                           | Most state governments do not provide comprehensive helplines to provide accountholders with meaningful guidance or individualized assistance. Nationwide, state ABLE programs encourage do-it-yourself ABLE account management online. At the same time, all state ABLE contracts strongly encourage ABLE accountholders to manage their finances with a private attorney, financial planner, and/or tax advisor.

to manage their finances with a private attorney, financial planner, and/or tax advisor.

|

| 4           | Remaining funds claimed by the state government after the accountholder has passed away (in most states) | In most states, all funds that remain in an ABLE account after the accountholder’s death will be claimed and collected by the state government to recoup expenses paid to the accountholder as government benefits during his or her lifetime.

|

| 5           | Most beneficial when combined with other special needs planning tools   | Finance experts recommend that, if possible, many accountholders should coordinate the spend-down of their ABLE accounts with a special needs trust (SNT) and/or Roth individual retirement account (IRA). As a best practice, accountholders should discuss their ABLE account plans with a special needs planning attorney to ensure all short- and long-term goals for the ABLE account align with the SNT and other

attorney to ensure all short- and long-term goals for the ABLE account align with the SNT and other legal instruments.

|

| 6           | Potential for financial loss (depending on the accountholder’s investment selections) | ABLE accountholders assume all investment risks as well as responsibility for any federal and state tax consequences related to the account. Depending the accountholder’s investment selections, it is possible to lose all or a portion of the savings in an ABLE account. Accounts with high investment risks can be impacted very negatively by market conditions. As a best practice, accountholders

risks can be impacted very negatively by market conditions. As a best practice, accountholders should consult with a special needs financial planner and/or tax advisor before selecting an ABLE account investment structure with high financial risks of loss. |

ABLE accounts are often most advantageous when combined with other special needs planning tools as part of a comprehensive long- and short-term budget plan (Rephan and Groshek 2016). Finance experts recommend that, if possible, many accountholders should coordinate the spend-down of the relatively low funds in their ABLE accounts with spending from higher savings amounts in their SNT (Abbey and Hershey 2016; see also Hershey and Kelly 2019 regarding using a Roth individual retirement account

Hershey 2016; see also Hershey and Kelly 2019 regarding using a Roth individual retirement account (IRA) as another possible source of funding for special needs planning in coordination with an ABLE account). ABLE accountholders and their families should be aware that state governments do not provide comprehensive helplines to provide accountholders with meaningful guidance or individualized assistance. All state ABLE contracts strongly encourage ABLE accountholders to manage their finances with

All state ABLE contracts strongly encourage ABLE accountholders to manage their finances with a private attorney, financial planner, and/or tax advisor. Hiring pro-fessional consultants can be helpful to protect ABLE account users against accidental financial losses – ABLE accountholders assume all finan-cial investment risks related to their accounts.

Helpful Resources for State-by-State Comparisons of ABLE Programs Qualified individuals can open an account in any state with an active ABLE account program and are not limited to their current state of residency. One of the greatest initial challenges in creating an ABLE account is determining which state ABLE program to utilize. Those who are interested in learning more about ABLE accounts can consult the online resources available from the National Disability Institute’s ABLE National

can consult the online resources available from the National Disability Institute’s ABLE National Resource Center (ANRC), a leading comprehensive source of independent information about each state’s ABLE program. The ANRC website includes two information research functions: a “Search by ABLE Program Features” tool (ABLE National Resource Center 2020a) and a “View All State Programs” tool (ABLE National Resource Center 2020b). These webpages allow individuals to compare state ABLE program

National Resource Center 2020b). These webpages allow individuals to compare state ABLE program features in several areas, including: debit card availability, estate recovery rules (state government collections of funds after the accountholder’s death), and tax deduction options for in-state residents.

Key Considerations When Selecting an ABLE Account Program There are six key issues to consider when deciding which ABLE program best serves an individual beneficiary’s needs:
1.  Many state ABLE programs include account fees for the following services: account main-tenance, disbursement, account report printing, rollovers, and administration. Will the ABLE program fees in this state unduly burden or otherwise inconvenience the accountholder?

2.  What is this state’s total account balance limit for ABLE accounts? Moreover, do these limits align with the accountholder’s short- and long-term budget goals?
3.  Is the ABLE accountholder or those who con-tribute to an ABLE account eligible for an income tax deduction in this state?
4.  Is the accountholder best served by a program that offers a debit or purchasing card to use ABLE account funds? If so, does this state ABLE program offer a card option?

5.  State ABLE programs offer allow accountholders to choose between investment options with varying degrees of financial risk. Does this particular state ABLE account pro-gram offer the degree of investment risk that most benefits the accountholder?
6.  How will the investment-related fees for this particular state ABLE account program impact the beneficiary? Does this state ABLE program have high investment fees that will signifi-cantly reduce the ABLE account balance? (Kelly and Hershey 2018).

Hiring Legal and/or Financial Professionals as a Recommended Best Practice Most ABLE savings account program agree-ments contain links to additional information regarding investment options, strategies, and potential risks of financial losses. Directly or indirectly, a majority of state ABLE programs encourage do-it-yourself account management, while at the same time, explicitly warning individuals against it with legal disclaimers. Consider, for example, the following broad dis-claimer which

against it with legal disclaimers. Consider, for example, the following broad dis-claimer which is prominently placed within sev-eral state ABLE program websites and contract agreements: Before investing in any ABLE program, you should consider whether your home state offers an ABLE program that provides its taxpayers with favorable state tax or other benefits that are only available through investment in the home state’s ABLE pro-gram. You also should consult your financial, tax, or other

investment in the home state’s ABLE pro-gram. You also should consult your financial, tax, or other adviser to learn more about how state-based benefits (or any limitations) would apply to your specific circumstances. You also may wish to directly contact your home state’s ABLE program, or any other ABLE program, to learn more about those plans’ features, benefits and limitations. Keep in mind that state-based benefits should be one of many appropriately weighted factors to be consid-ered when

state-based benefits should be one of many appropriately weighted factors to be consid-ered when making an investment decision (e.g. Alaska ABLE Plan: A Member of the National ABLE Alliance 2020) After reviewing all contract agreements and associated links, it is a recommended best practice for individuals considering an ABLE account to seek personalized, professional guidance (McGee and Ferguson 2017). If feasible, discuss specific legal, investment, and tax situations in detail with a tax

2017). If feasible, discuss specific legal, investment, and tax situations in detail with a tax advisor, attorney, and/or other financial planner.

See Also ▶Conservatorship (Full Conservatorship and Limited Conservatorship) ▶Guardianship ▶Power of Attorney (Financial and Property Management) ▶Power of Attorney for Healthcare (Durable Healthcare Power of Attorney and Medical Power of Attorney)

▶Special Needs Planning (SNP)   Definition The Achieving Academic Independence in Mid-dle School-Outpatient (AIMS-O) intervention involves teaching academic executive functioning (EF) skills using behavioral management (e.g., reinforcement, behavioral contract, first-then lan-guage, etc.) principles to promote increased inde-pendence related to academics. Sessions follow a consistent routine of (1) real-world practice review (discussion of previously taught skill and how it was used at home);

(1) real-world practice review (discussion of previously taught skill and how it was used at home); (2) teaching component (PowerPoint, video clips, hands-on activities, etc.) that focuses on teens and parents learning key academic EF skills (e.g., creating a homework system, study cards); and (3) in-session practice of the newly taught concepts/strategies (e.g., par-ents and teens work together to create a behavioral contract/agreement, study cards, etc.) with coaching from the psychologist.

to create a behavioral contract/agreement, study cards, etc.) with coaching from the psychologist. Teens are assigned real-world practice tasks each session that are designed to lead to further mastery of newly taught skills through practice at home with support (as needed) from their parents between sessions. Currently, the seven 90-minute AIMS-O sessions include (1) education related to EF, (2) problem solving, (3) behavioral contracting related to use of academic EF skills, (4) organization

problem solving, (3) behavioral contracting related to use of academic EF skills, (4) organization and time man-agement skills, (5 and 6) study skills including study cards, memory strategies such as acrostics and acronyms, summarizing skills, and graphic organizers, and (7) planning for use of skills in different settings (e.g., school), school collabora-tion, and teen initiative. AIMS-O is taught by a clinical psychologist and co-facilitator (e.g., clini-cal psychology graduate student) and

by a clinical psychologist and co-facilitator (e.g., clini-cal psychology graduate student) and is attended by parents and teens. Parents play a critical role as a coach for their teens to support the acquisition and mastery of key academic EF skills at home. AIMS-O is intended for middle school teens with Autism Spectrum Disorders (ASD) without intel-lectual disability (ID) who are in the general edu-cation setting.

Historical Background Youth with autism spectrum disorders (ASD) fre-quently experience significant academic problems in a variety of domains (Whitby and Mancil 2009). Although higher cognitive abilities are associated with better academic performance, youth who have ASD without an intellectual dis-ability (i.e., average IQ) may still struggle aca-demically (Keen et al. 2016). Specific academic challenges in high functioning ASD may include writing (e.g., organizing content), reading

academic challenges in high functioning ASD may include writing (e.g., organizing content), reading com-prehension (e.g., understanding how individual details contribute to a greater lesson, taking the perspectives of others), and math problem solving (Keen et al. 2016). While some of these academic struggles stem from key features of ASD (e.g., social-communication deficits, narrowly defined interests, and concrete/literal thinking), they are also strongly linked to deficits in executive

interests, and concrete/literal thinking), they are also strongly linked to deficits in executive func-tioning (EF) such as organization, time manage-ment, prioritization, and initiation (Pennington and Ozonoff 1996). EF skills are critical for academic success. Students must be able to initiate tasks, perform multistep sequences of events, reflect, reason, plan, and prioritize (e.g., complete different tasks for several subjects on time), sustain performance and complete tasks, be flexible in

tasks for several subjects on time), sustain performance and complete tasks, be flexible in their thinking (e.g., select the learning strategy appropriate for each context), and monitor their performance (e.g., manage progress and check for mistakes; (Best et al. 2009, 2011; Endedijk et al. 2011; Fisher and Happe 2005). However, 35–70% of teens with ASD without an intellectual disability present with EF deficits (Blijd-Hoogewys et al. 2014; Pennington and Ozonoff 1996) including deficits in

with EF deficits (Blijd-Hoogewys et al. 2014; Pennington and Ozonoff 1996) including deficits in planning, flexibility, shifting set, meta-cognition (awareness of own thought processes), and monitoring their own behavior (Hill 2004). Common challenges include difficulties getting started on tasks, managing distractions, planning for studying, multitasking, keeping materials organized, and prioritizing tasks. Parents of teens with ASD also report difficulties getting their child to start school work

tasks. Parents of teens with ASD also report difficulties getting their child to start school work independently (Endedijk et al. 2011; Hampshire et al. 2014). As a result, teens with ASD and their parents may struggle to acquire and manage critical academic behaviors (e.g., material organization, tracking assignments, homework completion, effectively studying, and breaking down large assignments) and experience significant homework issues (e.g., misunderstanding assignments) that are associ-ated

and experience significant homework issues (e.g., misunderstanding assignments) that are associ-ated with EF deficits. Persistent EF deficits are clear predictors of poor academic performance (Best et al. 2009, 2011; Fisher and Happe 2005) and poor outcomes in ASD (Clark et al. 2010). There is a clear need for interventions targeting academic EF skills, including planning, organization, time manage-ment, and study skills, that lead to more successful outcomes in ASD. Yet, according to the National

and study skills, that lead to more successful outcomes in ASD. Yet, according to the National Research Council and National Autism Center, there are currently no evidence-based interven-tions targeting academic EF skills for teens with ASD despite similar interventions already existing for children with similar EF deficits (e.g., attention-deficit/hyperactivity disorder or ADHD). More specifically, to date, there are no randomized clinical trials demonstrating the effi-cacy of EF interventions for

to date, there are no randomized clinical trials demonstrating the effi-cacy of EF interventions for middle school teens with ASD. The majority of research with children with ASD has focused on the younger ages, with less attention to the transition issues and challenges they face as adolescents (Wong et al. 2015). This is problematic since the inclusion of students with disabilities into general education classrooms is a substantiated transition best practice (Schall et al. 2012). In fact,

education classrooms is a substantiated transition best practice (Schall et al. 2012). In fact, general education placement of students with ASD has increased at a rate faster than all other disability categories (Whitby 2013). Further, as rates of inclusion for middle school students with high functioning ASD increase, teachers and para-educators do not typically have the support and training to implement evidence-based treatment to meet their needs (Kurth and Mastergeorge 2010). Specifically,

implement evidence-based treatment to meet their needs (Kurth and Mastergeorge 2010). Specifically, most individualized education programs (IEPs) for students with high functioning ASD enrolled in inclusive education settings are more likely to focus on academic progress, but little research has been conducted on how to develop environments and utilize strategies and supports to facilitate academic success (Kurth and Mastergeorge 2010). Given the prevalence of EF deficits coexisting through the

success (Kurth and Mastergeorge 2010). Given the prevalence of EF deficits coexisting through the transition to middle school, it is unsurprising that students with ASD have significant academic problems in middle school (Adreon and Stella 2001; Mullins and Irvin 2000). In fact, during middle school years, the academic performance of teens with high functioning ASD is approximately 2–3 years below their typical peers (Wagner et al. 2003).

Current Knowledge AIMS-O is currently still in development. Focus groups with parents, teens with ASD, teachers, and school administrators confirm that an inter-vention targeting academic EFs is needed for middle school teens with ASD without an ID. Themes that emerged from parent and teen groups (Tamm et al. 2019) include:

1.  Executive Functioning Is a Barrier to Academic Success: Both parents and teens agreed that the teens had difficulty with remembering to either do assigned homework or turn in completed homework, which then leads to missing assignments and negatively affects grades. Organization was another prominent challenge noted by both teens and parents. Parents also reported that they provide varying levels of support to help their teen stay orga-nized. Most teens required verbal reminders from

levels of support to help their teen stay orga-nized. Most teens required verbal reminders from teachers to complete assignments. Teens and parents reported that difficulties paying attention also affect school performance. Teens related that they have difficulty listening to others, which gets them in trouble at school and at home. Parents agreed that their teens have difficulty listening and focusing, and they must monitor their teens to ensure tasks are completed. When tasks require sustained

and they must monitor their teens to ensure tasks are completed. When tasks require sustained attention (e.g., listen

background, developmental history, and motor skills. Another 266 items concern characteristics of ASD (i.e., social communication/language, social interaction, and restricted repetitive behaviors and interests [RRBI]), while a further 291 questions relate to current mental states relevant to other psychiatric diagnoses. Designed to sound as natural as possible, the questions must be asked in the same way as they are written, which should sound like a normal conversation with the informant. The

same way as they are written, which should sound like a normal conversation with the informant. The 3Di is unique in its construction, as it is neither a completely structured nor a semi-structured interview but a hybrid between these two approaches. Moreover, the 3Di’s use of computerized administration aims to ensure high reliability, good discriminant validity, and interviewee acceptability. To minimize the time spent in the face-to-face assessment, a pre-interview package of questionnaires

minimize the time spent in the face-to-face assessment, a pre-interview package of questionnaires has been designed that can be provided by parents in advance of their appointment and entered onto the computer from record forms. With this option, background information on family structure and biological functions such as motor skills, sleep, and eating/toileting behavior are completed in advance. Questions about autistic symptoms are always asked face-to-face. The full ASD interview, which is

Questions about autistic symptoms are always asked face-to-face. The full ASD interview, which is recommended for complex cases, can usually be conducted in 90–120 min, with pre-entry.

The 3Di was computerized to improve reliability. Computerization would ensure good inter-rater and test-retest reliability with minimal training, for it made rater drift less likely. The 3Di has a computerized interview database using Access Runtime, which is freely available and compatible with all versions of Windows. The system will run on iOS but requires Windows and Office to be installed with Parallels or equivalent. The latest release of the UK 3Di software is compatible with Windows 10.

Parallels or equivalent. The latest release of the UK 3Di software is compatible with Windows 10. A structured computer-generated report in Microsoft Word is available upon completion. All data are automatically downloadable into spreadsheet format. The software used to construct the interview has a number of features that were developed to enhance the user experience. These include the use of an “interviewer explorer” tree and colored tabs that indicate whether a question has been answered or

“interviewer explorer” tree and colored tabs that indicate whether a question has been answered or not. The interview tailors itself to the gender of the subject and the names of the child and parents. Alternative routes through the interview can be selected, which facilitate the efficient pre-entry of material such as demographic details of the family, as well as allowing specific routes to be selected in order to identify comorbidity. Furthermore, the interview consists of several modules. The

in order to identify comorbidity. Furthermore, the interview consists of several modules. The standard interview asks about both potential ASD and attention deficit hyperactivity disorder (ADHD). Other modules, which are concerned with the full range of child psychiatric comorbidity, are optional. There are also questions about a range of adaptive functions, including motor skills, sleeping and eating, etc. Algorithms speed the interview by eliminating illogicalities, such as questions about

eating, etc. Algorithms speed the interview by eliminating illogicalities, such as questions about spoken language in a nonverbal child.

The interviewer must make simple coding decisions in response to most questions, as it is a critically important aspect of the design that the interviewer interprets the interviewee’s qualitative responses and makes coding decisions based on their clinical expertise. The wording, content, and coding of those questions have been designed to simplify, quicken, and ease the decision-making process. Responses about behaviors are generally coded on three point scales: with “0” indicating no such

Responses about behaviors are generally coded on three point scales: with “0” indicating no such behavior is or has ever been present; “1” signifying minimal evidence of such behavior; and “2” representing that there is or has ever been definite or persistent evidence of such behavior. For the RRBI domain, a fourth option is often possible, which includes clear evidence of the behavior and clear impact on social functioning. Because coding options are simple and limited, it is possible for the

impact on social functioning. Because coding options are simple and limited, it is possible for the interviewer to quickly verify with the respondent which option is the most appropriate. Moreover, some coding decisions are deliberately skewed (e.g., “often, rarely, never”), in order to magnify differences between populations and increase discriminant validity. The 3Di recognizes that asking parents to describe in detail specific behaviors their child may have demonstrated many years previously

to describe in detail specific behaviors their child may have demonstrated many years previously produces responses of unverifiable validity. Accordingly, the interview’s emphasis is on coding current behaviors for the most part. Selected questions about repetitive and stereotyped behaviors and sensory sensitivities seek evidence from early childhood onward because these aspects of the autism spectrum tend to ameliorate, especially in those with normal-range intelligence.

Training in the use of the interview can be provided and is brief. It entails role-playing, video rating of model interviews, and an introduction to the interview software (IxDx 2019). Interpretation of the DSM-5 algorithms and the interview’s integration with observational assessments is covered. Inter-rater reliability for the “blind video rating” is ascertained after every course and is excellent (kappa>0.85). Training courses are held worldwide, and over 2500 trainees are now using the 3Di

(kappa>0.85). Training courses are held worldwide, and over 2500 trainees are now using the 3Di in clinical practice.

## Historical Background  The Developmental, Diagnostic and Dimensional interview was developed in the early 2000s by David Skuse et al. (2004), when changes in the conceptualization of autism as a multidimensional condition raised the need for new methodologies that could capture the severity of autistic traits in clinical as well as general population samples. Both inter-rater and test-retest reliability were potentially enhanced by the computerized format, compared with other autism

reliability were potentially enhanced by the computerized format, compared with other autism assessment instruments. The computerization of diagnostic algorithms ensured diagnostic validity was maintained, and the potential to create a diagnostic database facilitated research. The range of questions incorporated allowed users to distinguish between ASD, specific language impairment (SLI), and other comorbidities.

While the original interview takes 2 h to complete, a short 45-min version (3Di-sv) has also been constructed (Santosh et al. 2009). This short version comprises 53 items in 3 domains: reciprocal social interaction (24 items), communication (21 items), and repetitive and stereotyped behavior (8 items). In addition, it originally included eight items concerning language development and age of first symptoms, which were to be used for DSM-IV-TR classification of PDD subtypes. Concurrent validity

symptoms, which were to be used for DSM-IV-TR classification of PDD subtypes. Concurrent validity with the full version is excellent, but the 3Di-sv was originally not compatible with DSM-5 as it emulates the ADI-R (DSM-IV TR) algorithm. Therefore, in the Netherlands, a study was performed to make the 3Di-sv compatible with DSM-5 (Slappendel et al. 2016). This 3Di DSM-5 short version is currently being further evaluated.

Recently, a version for adults of normal intelligence has been developed: the 3Di-Adult (Mandy et al. 2018). The 3Di-Adult can be administered to a parent or a relative of the client. The items were taken from an initial item pool from the diagnostic algorithm of the original 3Di (Skuse et al. 2004; Santosh et al. 2009), which have previously been identified as being especially discriminating. Subsequently, based on discussion within the study team, the items were matched to the DSM-5 criteria.

based on discussion within the study team, the items were matched to the DSM-5 criteria. Next, based on discussion and pilot analyses of existing 3Di data, the questions were sorted into those best suited for discriminating symptoms in either childhood or adulthood, which were then rephrased as either historical questions (n ¼ 21) or to assess current behavior (n ¼ 31). Lastly, 17 new questions were constructed based upon knowledge of the ASD phenotype in adulthood, to ensure that all aspects

were constructed based upon knowledge of the ASD phenotype in adulthood, to ensure that all aspects of the DSM-5 were covered. This process resulted in a 69-item version for adults. Preliminary analyses revealed high inter-rater reliability and internal consistency of the scales. Furthermore, substantially higher subscale scores for ASD cases than comparisons were found, demonstrating criterion validity. The 3Di-Adult was also highly accurate in discriminating between ASD cases and comparisons

The 3Di-Adult was also highly accurate in discriminating between ASD cases and comparisons and was found to have excellent sensitivity (95%) and specificity (92%). The interview took 50 min for people with ASD on average. Although these findings are preliminary, the 3Di-Adult seems promising as a useful tool in research or clinical practice in identifying ASD in adults based on the DSM-5 criteria. The 3Di-Adult has also been translated into Dutch, in which language its validity is currently being

3Di-Adult has also been translated into Dutch, in which language its validity is currently being investigated.

The 3Di has previously been translated into several languages: Dutch, Finnish, Italian, Norwegian, Spanish, Cantonese, Mandarin, Taiwanese, and Thai, of which the latter four are currently only available in the short version. Other translations (e.g., Arabic, Hindi, Swahili, French) are still under development. In 2012, a validation study was published by the Thai translation team (Chuthapisith et al. 2012) in which a group of 63 children with clinically ascertained ASD was compared to a group

al. 2012) in which a group of 63 children with clinically ascertained ASD was compared to a group of 67 typically developing children on their mean 3Di-sv scales scores in each of the 3 domains. The results showed similar sensitivity and specificity to the original UK sv-validation (Santosh et al. 2009). The highly detailed phenotyping that is possible with the 3Di allows one to examine subtle differences in the ASD phenotype that might be due to cultural factors. Considering the reformulation

in the ASD phenotype that might be due to cultural factors. Considering the reformulation of ASD in the DSM-5, and the condition becoming an increasingly global diagnosis, a study was performed (Mandy et al. 2014) that investigated the DSM-5 version’s applicability and cross-cultural stability across the spectrum of symptoms in two different cultures (i.e., UK and Finland). Using confirmatory factor analysis and comparison of model fit between Finnish and UK participants, it was found that the

analysis and comparison of model fit between Finnish and UK participants, it was found that the DSM-5 model worked well in ASD participants in both cultures. However, it was found not suitable for measuring the sub-clinical autistic trait characteristic of the broader autism phenotype (BAP) in the Finnish population. This finding might suggest that cross-cultural variability may be greatest for subtle differences in the ASD phenotype.

A study by Slappendel et al. (2016) investigated the items of the short version of the 3Di (3Di-sv; Santosh et al. 2009) which were translated into Dutch. Criterion validity was explored by first comparing the 3Di-sv classifications to clinical diagnoses that were confirmed by an ADOS-2 classification. Data were available for 146 children (50 of whom were considered to have ASD). Although the 3Di-sv classifications showed good sensitivity (.84), specificity was low (.54) when comparing with

3Di-sv classifications showed good sensitivity (.84), specificity was low (.54) when comparing with ADOS-2-confirmed clinical diagnosis. Post hoc analyses with the full sample (n ¼ 282) were then conducted, which lacked some ADOS-2 data, but which better reflected the samples used in previous studies that reported higher specificity for the 3Di-sv’s performance (e.g., Chuthapisith et al. 2012). These resulted in a sensitivity of 0.77 and an improved specificity of 0.67. The researchers suggested the

resulted in a sensitivity of 0.77 and an improved specificity of 0.67. The researchers suggested the initial limited specificity they found, compared to previous studies, was due both to the stringency of their diagnostic criteria and to the clinical characteristics of their population. Moreover, the PDD module of the 3Di was translated into Cantonese, and its applicability was subsequently tested using a sample of 194 Chinese children aged 6–12 years in Hong Kong (Lai et al. 2015). Using the

using a sample of 194 Chinese children aged 6–12 years in Hong Kong (Lai et al. 2015). Using the original authors’ cutoff scores, the Cantonese version was found to have excellent psychometric properties, a sensitivity of 95%, and a specificity of 77%. In distinguishing between ASD and non-ASD cases, the agreement was 85.6%, with kappa 0.71. However, the relatively higher false-positive rate and relatively high scores on one of the PDD dimensions could be due to cultural differences between

relatively high scores on one of the PDD dimensions could be due to cultural differences between England and Hong Kong. For example, children in Hong Kong are less likely than British children to invite friends over after school. In these instances, higher 3Di scores do not indicate autistic symptoms but instead reflect the (social) cultural expectations, habits, and lifestyle of the people of Hong Kong. This finding highlights the need for further validation and development of norms for the 3Di

Kong. This finding highlights the need for further validation and development of norms for the 3Di in different cultural contexts.

The 3Di has been used in a wide variety of research studies. The detailed phenotyping generated by the interview has encouraged investigations of conceptual issues and more recently the construct validity of DSM-5 (e.g., Mandy et al. 2012a; Slappendel et al. 2016). Because the instrument seeks information about a wide range of associated symptoms, language development, and comorbidity, it has allowed researchers to employ the interview in studies on these topics. Furthermore, as trait

has allowed researchers to employ the interview in studies on these topics. Furthermore, as trait measurement is quintessentially dimensional in character, the 3Di is also well suited for studies of the broader phenotype of ASC (e.g., De la Marche et al. 2015) and sex differences in the phenotype (Mandy et al. 2012b).

## Psychometric Data  Reliability studies have been conducted in the development phase of the instrument, as well as “live” measures of reliability which were obtained during training courses. In the original reliability analyses (Skuse et al. 2004), all sections of the interview were administered to parents of 23 PDD and 27 non-PDD cases in a referral sample. The interview was performed by one member of the assessment team, while another scored the responses independently on a computer.

one member of the assessment team, while another scored the responses independently on a computer. Inter-rater and test-retest reliability were analyzed for ICD-10 diagnoses which are generated by the 3Di algorithms, resulting in 96% and 94% agreement, respectively. Intraclass correlation coefficients for both reliabilities were found in excess of 0.86, which is excellent. The reliability of the instrument during live training sessions has also been evaluated, when each group of trainees rates a

during live training sessions has also been evaluated, when each group of trainees rates a video recording of an entire interview with the parent of an autistic child. Reliability was evaluated on the basis of ADI-R algorithm scores. For a consecutive training group of 208 psychiatrists, pediatricians, and other professionals, representing approximately 20 training courses, the reference score of the interviewer was compared to the group mean. For the reciprocal social interaction subscale,

of the interviewer was compared to the group mean. For the reciprocal social interaction subscale, language and communication skills, and repetitive and stereotyped behaviors, the scores of the trainees were almost identical to the reference scores.

Extensive research on the 3Di has demonstrated its content, concurrent, discriminant, and criterion validity for ASD. The content validity was assessed (Skuse et al. 2004) by reviewing published material on significant discriminating behavioral characteristics in children with ASD as well as the diagnostic criteria as described in the DSM-IV (APA 2013) and ICD-10 (World Health Organization 1993). Concurrent validity of the 3Di with the Autism Diagnostic Observation Schedule (ADOS; Lord et al.

Concurrent validity of the 3Di with the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 2000) has been evaluated in both preschool and school-age children. Duvekot et al. (2015) found that the overall percent agreement between the 3Di and ADOS classification was 63%, with a kappa of 0.20, indicating a slight agreement. However, as the 3DI and ADOS are different types of diagnostic methods (interview and observation), high agreement would not be expected. These instruments should

methods (interview and observation), high agreement would not be expected. These instruments should nevertheless be complementary in the diagnostic process, to gain information from observation as well as parent report on current behavior and developmental history. Formal analysis of this aspect of validity is pending. Furthermore, concurrent validity in autism spectrum conditions has been evaluated using a clinical sample of 60 children (Skuse et al. 2004). The diagnoses by a clinician on the

using a clinical sample of 60 children (Skuse et al. 2004). The diagnoses by a clinician on the basis of ICD-10 criteria and diagnoses on the basis of 3Di algorithms were compared, which showed that agreement between these methods was very good. Discriminant validity based on the 3Di algorithm’s ability to distinguish between autistic and non-autistic conditions was found to be excellent, with a sensitivity of 1.0 and specificity being higher than 0.97. Furthermore, the 3Di’s positive and

a sensitivity of 1.0 and specificity being higher than 0.97. Furthermore, the 3Di’s positive and negative predictive powers were found to be 0.93 and 0.91, respectively. The assessment of criterion validity was based on the assessment of 29 children with both the 3Di and the ADI-R, who had been interviewed on both instruments by different interviewers at two different points in time (a 2.4 years apart). Subscales that were similar in broad content and identical in the range of scores to the

apart). Subscales that were similar in broad content and identical in the range of scores to the ADI-R were produced for the 3Di. The agreement on threshold for all three domains was found to be significant with p < 0.01, with 86% agreement in the reciprocal social interaction domain, 100% agreement for communication, and 76% for repetitive and stereotyped behaviors. However, complete agreement was not expected, in part because criterion validity was potentially compromised by inter-rater and

was not expected, in part because criterion validity was potentially compromised by inter-rater and test-retest variability and in part because the ADI-R algorithm was based largely on historical information, whereas the 3Di seeks contemporaneous information in virtually all domains.

## Clinical Uses  The Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association 2013) and the International Classification of Disease (ICD-10; World Health Organization 1993) are the current accepted classification systems for the diagnosis of ASD. The process of reaching an ASD diagnosis is complex, considering the etiological heterogeneity of ASD, high rates of comorbidity with other medical, psychological or psychiatric conditions, and different levels of

of comorbidity with other medical, psychological or psychiatric conditions, and different levels of severity in symptoms (Falkmer et al. 2013). Furthermore, diagnostic instruments should be highly sensitive and specific, in order to reduce the chances of false positives or negatives. Preferably, diagnostic instruments should also be brief and practical, as well as appropriate for all ages and IQ ranges within the autism spectrum (Mayes et al. 2009). Considering the 3Di’s preliminary results

IQ ranges within the autism spectrum (Mayes et al. 2009). Considering the 3Di’s preliminary results indicating excellent reliability and sensitivity, high sensitivity, specificity, and correct classification rate, as well as its practical computerized use and option for the use of a short version, it has proven to be a valuable tool in the diagnostic process.

The current “gold standard” for diagnosis of ASD includes a standardized observation of the child, such as the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 2000) and a standard parental interview, for example, the Autism Diagnostic Interview-Revised (ADI-R; Lord et al. 1994) or the Developmental, Dimensional and Diagnostic Interview (3Di; Skuse et al. 2004) (Duvekot et al. 2015). In addition, according to the National Institute for Health and Care Excellence (NICE 2019), the true

addition, according to the National Institute for Health and Care Excellence (NICE 2019), the true “gold-standard” clinical assessment should be a multidisciplinary team process which also involves other assessments with consensus clinical judgment such as differential diagnosis, a physical examination, and assessment of comorbid conditions. In a systematic literature review on diagnostic instruments assessing ASD by Falkmer et al. (2013), the 3Di was noted to have the highest correct

instruments assessing ASD by Falkmer et al. (2013), the 3Di was noted to have the highest correct classification rates of all tools evaluated. However, there are relatively few studies that provide evidence of its utility. Therefore, more research is needed on the 3Di in this regard.

The 3Di was originally devised to be a dimensional measure of autistic traits, although the disorder was predominantly conceptualized in categorical terms at that point in time. Accordingly, it was designed to emulate the algorithmic content of the ADI-R (Lord et al. 1994), and as such, the 3Di’s algorithm agreement with the ADI-R for threshold scores is high (Skuse et al. 2004). Furthermore, the 3DI was meant to also measure symptoms in a far broader context, including associated problems

the 3DI was meant to also measure symptoms in a far broader context, including associated problems such as sensory sensitivities and pragmatic language skills, which were not at that time part of any diagnostic rubric, thus being wider in scope. The latest release of the 3Di-5 also includes a comorbidities tool, that screens for additional disorders based on DSM-5 diagnostic criteria. Algorithms generate comorbidity risks for all common child diagnoses. If full pre-entry has been achieved, it

generate comorbidity risks for all common child diagnoses. If full pre-entry has been achieved, it will be possible without further questioning – upon completion of the interview – to generate comorbidity probabilities for ADHD, conduct disorder, and tic disorders as well as pervasive developmental disorders. Additional modules allow the measurement of anxiety disorders, depression, dysthymia, bipolar affective disorder, eating disorders, post-traumatic stress disorder, and schizotypal

bipolar affective disorder, eating disorders, post-traumatic stress disorder, and schizotypal disorders. However, it is important to note that the modules of this screening tool have not yet been validated, except for the ADHD module (which is mandatory because of the high overlap of symptoms with ASD), and the anorexia module has a solid foundation of expert input.

When the DSM-5 was published (APA 2013), the new diagnostic criteria were incorporated into a revised 3Di by writing new questions and developing new algorithms which mapped onto the DSM-5 criteria A and B. These included nonverbal interaction, peer relationships, sharing, socio-emotional reciprocity, nonverbal communication skills, conversational abilities, unusual preoccupations, routines and rituals, stereotyped and repetitive motor behavior, preoccupation with parts of objects, and sensory

stereotyped and repetitive motor behavior, preoccupation with parts of objects, and sensory abnormalities. In the revised version, 108 questions contribute to the A-scale and 74 questions to the B-scale DSM-5 diagnostic algorithms. Mandy et al. (2012a) performed confirmatory factor analysis to assess the construct validity of ASD, especially its bidimensional reconceptualization of the autism phenotype. It was found that the two-factor model of autistic symptoms as described in the DSM-5 had

It was found that the two-factor model of autistic symptoms as described in the DSM-5 had superior statistical properties to the DSM-IV-TR model. The results also showed that it made statistical sense to include stereotyped language usage (a subscale of the Children’s Communication Checklist) within the restricted repetitive behavior dimension, together with the newly developed sensory abnormality symptoms. The latest release of the 3Di-5 (available upon request) has greatly increased the

symptoms. The latest release of the 3Di-5 (available upon request) has greatly increased the number of questions within this latter dimension (especially in the domain hyper- and hyposensitivity to a range of environmental stimuli), which has improved its metrical properties. However, although the 3Di output is tabulated in DSM-5 compatible form, the interpretation of that output has not yet been validated. To explore the compatibility of the 3Di-sv with the DSM-5, Slappendel et al. (2016)

been validated. To explore the compatibility of the 3Di-sv with the DSM-5, Slappendel et al. (2016) performed a study to investigate whether the short version of the Dutch 3Di translation (3Di-sv) would fit the DSM-5’s two-factor structure as well as the three-factor structure of the DSM-IV-TR. Confirmatory factor analyses revealed a better fit for a DSM-5 model than DSM-IV-TR model of ASD. As exploration of the content validity for the DSM-5 revealed some construct underrepresentation, thus a

of the content validity for the DSM-5 revealed some construct underrepresentation, thus a panel of 3Di-trained clinicians suggested 14 items be added to improve the 3Di-sv construct, based on a theory-driven, face validity perspective. These suggestions included questions on the topics of insistence of sameness, adherence to routines, and sensory hyper- and hypo reactivity.

## Future Directions  For future research, in order to create a new DSM-5 (short) version of the 3Di, adjustments need to be made and subsequently examined thoroughly. As current scoring algorithms still lead to DSM-IV-TR domains, specific DSM-5 3Di algorithms need to be validated and applied in sufficiently large samples and tested in clinical settings in order to achieve a full test of the construct validity of ASD. For example, versions including items that were added to provide better

construct validity of ASD. For example, versions including items that were added to provide better coverage of newly introduced DSM-5 criteria need further validation. Therefore, data-driven research on the suggested items on the basis of clinical consensus by Slappendel et al. (2016) is currently pending. This type of research should also consider evaluating the validity of the novel DSM-5 diagnosis of Social Communication Disorder, which is generated by 3Di algorithms. This diagnosis may

of Social Communication Disorder, which is generated by 3Di algorithms. This diagnosis may apply to children who were formerly diagnosed by DSM-IV TR with Asperger’s disorder or PDD-NOS. Concern has been expressed that they may not fulfil the new DSM-5 criteria for ASD, which might subsequently lead to loss of eligibility for care (McPartland et al. 2012). Furthermore, translation and validation of the 3Di-Adult in other cultures will provide a reliable, valid, and resource-efficient way in

of the 3Di-Adult in other cultures will provide a reliable, valid, and resource-efficient way in helping the “lost generation” of adults with ASD who are currently lacking a formal diagnosis and therefore appropriate treatment (Mandy et al. 2018).

## Short Description or Definition  One of the most common genomic syndromes involving multiple anomalies is Chromosome 22q11.2 deletion syndrome. Although there are earlier mentions of the disorder clinically, going back to 1829 (Greenberg 1993), the syndrome was first exemplified in detail by Angelo DiGeorge in 1968 (DiGeorge 1968) and by R. J. Shprintzen and colleagues in 1978 (Shprintzen et al. 1978); all presented children demonstrated clinical abnormalities such as underactive parathyroid

1978); all presented children demonstrated clinical abnormalities such as underactive parathyroid gland, underdeveloped thymus, palate defects, facial anomalies, heart defects, and cognitive limitations. In the 1970s, the syndrome was also noted by Kinouchi et al. (1976), who labeled the condition as conotruncal anomaly face syndrome. Ultimately, in the 1990s, the specific genetic cause for the condition was identified as a microdeletion (i.e., a deletion of a part of a chromosome) of chromosome

was identified as a microdeletion (i.e., a deletion of a part of a chromosome) of chromosome 22 at band q11.2 (Scambler et al. 1992). Thus, over the years, this genomic disorder has been called Sedlackova syndrome, DiGeorge syndrome, Shprintzen syndrome, conotruncal anomaly face syndrome, and velocardiofacial syndrome (VCFS). Since the 1990s, the syndrome has been increasingly referred to as 22q11.2 deletion syndrome, 22q11.2DS, which was used as an umbrella term to describe various clinical

deletion syndrome, 22q11.2DS, which was used as an umbrella term to describe various clinical phenotypes originating from the deletion.

The 22q11.2DS is associated with a vast array of physical, medical, cognitive, behavioral, and psychiatric features. It is characterized by multiple (>180) developmental aberrations, including specific craniofacial features (cleft palate, velopharyngeal insufficiency; 69–100%), thymic and parathyroid defects including hypocalcemia (17–60%), congenital cardiovascular malformations (49–83%), and mild to moderate renal anomalies (36–37%). The most striking feature of the syndrome is the tremendous

to moderate renal anomalies (36–37%). The most striking feature of the syndrome is the tremendous degree of phenotypic variability, both at the levels of the brain and behavior (Bassett et al. 2011; Kobrynski and Sullivan 2007; Roizen et al. 2007; Wang et al. 1998).

The associated phenotypes range from combinations of serious anomalies to the presence of isolated mild impairments (McDonald-McGinn and Zackai 2008). Another central feature of the syndrome is the prominent presence of psychopathology (9–50%), with the most frequently observed conditions being developmental delay in infancy (75%) and childhood (45%), speech and language disorders (79–84%), schizophrenia spectrum disorders (1.9–41.7%), autism spectrum disorders (16–26.5%), attention deficit

spectrum disorders (1.9–41.7%), autism spectrum disorders (16–26.5%), attention deficit hyperactivity disorder (15–37%), and learning disabilities (50–80%) (Kobrynski and Sullivan 2007; McDonald-McGinn et al. 1999; Polleux and Lauder 2004; Prasad et al. 2008; Ryan et al. 1997; Schneider et al. 2014).

In addition, there are pronounced transformations of the syndrome’s presentation across different developmental stages. The causes of such variability within the group of individuals with 22q11.2DS and across the life span within an individual are unclear (Aggarwal and Morrow 2008; Schneider et al. 2014). One of the most consistent findings in the phenotypic presentation of 22q11.2DS is a low average to borderline range of general cognitive functioning (Antshel et al. 2008). Yet, this deficiency

to borderline range of general cognitive functioning (Antshel et al. 2008). Yet, this deficiency is not consistent across different domains of cognitive functioning, although, as a group, individuals with the syndrome tend to function at a lower level than typically developing individuals in all domains of cognitive performance. Verbal functioning in spoken and written domains (e.g., receptive language, decoding and spelling, auditory verbal rote memory, but not higher-level processing such as

decoding and spelling, auditory verbal rote memory, but not higher-level processing such as comprehension) has been observed to be a relative strength, whereas visual-spatial (e.g., space orientation, visuospatial memory, visuospatial perception), quantitative processing (e.g., number and magnitude representation), and executive functioning (e.g., initiation, planning, working memory, and monitoring skills) have been marked as domains of particular weakness. Yet, once again, although this

skills) have been marked as domains of particular weakness. Yet, once again, although this profile appears to be characteristic of individuals with 22q11.2DS as a group, within this group, there is variation in both the direction (i.e., reversed cognitive patterns have been reported) and the magnitude (i.e., the standard scores) of the discrepancy. Of note, data from a collaborative study by the International 22q11.2 Brain Behavior Consortium (Vortsman et al. 2015) revealed that individuals with

22q11.2 Brain Behavior Consortium (Vortsman et al. 2015) revealed that individuals with the syndrome show a cognitive decline of 7.04 Full Scale IQ points, 9.02 points in Verbal IQ, and 5.09 points in Performance IQ. Additionally, those individuals with a psychotic spectrum disorder experienced even more steeper declines in cognitive functioning.

## Epidemiology  Chromosome 22q11.2DS is the most common microdeletion syndrome in humans, with prevalence estimates ranging from one in 2,000 to one in 6,395; with only 5–10% of deletions having been inherited and the rest arising de novo (Swillen et al. 1998). However, because many children born with the condition do not have observable abnormalities or immediately detectable medical difficulties, it has been suggested that up to one third of children are not diagnosed until later childhood

it has been suggested that up to one third of children are not diagnosed until later childhood and that some cases may go completely undetected. Therefore, the population prevalence may be closer to affecting 1 in 2,000–4,000 live births (Schneider et al. 2014; Shprintzen 2008). Boys and girls are affected equally, but the deletion is more prevalent within certain ethnic groups; 22q11.2DS occurs more frequently among Hispanics compared with Whites, African Americans, and Asians (Botto et al.

more frequently among Hispanics compared with Whites, African Americans, and Asians (Botto et al. 2003).

## Natural History, Prognostic Factors, and Outcomes  Studies have demonstrated that heart defects and severe immune deficiency are the main causes of death in infants with 22q11.2DS. However, with the advancements in neonatal cardiology, many infants undergo early surgical repairs that permit them to survive. Currently, there is limited information regarding the life span of individuals with 22q11.2DS. There are regional data that suggest that if individuals receive adequate medical

with 22q11.2DS. There are regional data that suggest that if individuals receive adequate medical interventions or do not develop significant medical conditions, then the life span may be normative (Shprintzen 2008). Similarly, psychological, psychiatric, functional, and vocational outcomes are likely influenced by a host of risk and protective factors, including: the size of the genetic deletion, genes in the region, the number of medical problems, presence of intellectual disability, and

genes in the region, the number of medical problems, presence of intellectual disability, and co-morbid psychiatric conditions, as well as family and environmental factors such as access to specialized educational and therapeutic interventions (Swillen et al. 2018).

## Clinical Expression and Pathophysiology  ### Clinical Expression  The clinical expression of 22q11.2DS is extremely variable. Common phenotypic presentations may include the following: craniofacial abnormalities (cleft lip, cleft palate, velopharyngeal insufficiency, and microcephaly), feeding difficulties, conotruncal heart defects (tetralogy of Fallot, interrupted aortic arch, and ventricular septal defects), hearing loss or abnormal ear exams, genitourinary anomalies (absent or malformed

septal defects), hearing loss or abnormal ear exams, genitourinary anomalies (absent or malformed kidneys), hypocalcemia (low blood calcium), and immunological difficulties due to abnormal T-cells. The facial features of children may also be atypical and may include the following: small ears, hooded eyelids, asymmetric crying facies, and small mouth, chin, and nasal area (Velo-Cardio-Facial Syndrome Educational Inc. 2009). In addition to these various medical vulnerabilities, individuals with

Educational Inc. 2009). In addition to these various medical vulnerabilities, individuals with 22q11.2DS frequently demonstrate a range of cognitive impairments. Typically, individuals exhibit low average to borderline intellectual functioning. Intellectual disability, typically in the mild range, has been documented in 25–40% of individuals (Shprintzen 2000; Swillen et al. 1997). In early childhood, infants and toddlers typically present with global developmental delays, including speech and

infants and toddlers typically present with global developmental delays, including speech and language disorders. Later in childhood, specific patterns of cognitive and learning difficulties may become evident. Specifically, relative strengths in rote verbal memory, reading decoding, and spelling have been noted, in contrast to relative weaknesses in visuospatial memory, math computation, and executive functioning (planning, cognitive flexibility, and working memory) (Simon et al. 2005).

Numerous psychiatric conditions have been reported to occur in individuals with 22q11.2DS. Accordingly, elevated rates of attention deficit hyperactivity disorder (ADHD), anxiety disorders, major depression, obsessive compulsive disorder, and oppositional-defiant disorder have been observed in clinical samples (Antshel et al. 2006). In late adolescence and early adulthood, even more debilitating psychiatric conditions may emerge, such as those characterized by psychotic symptoms, including

psychiatric conditions may emerge, such as those characterized by psychotic symptoms, including schizophrenia and schizoaffective disorder. Gothelf et al. (2009) initially suggested that up to one third of patients may acquire psychotic disorders. Yet data from the International Consortium on 22q11.2 indicate that the rates of psychotic disorders vary across age groups, ranging from 1.97% in childhood to 10.2% in adolescence, and 41.3% in mature adults (Schneider et al. 2014). There have been

to 10.2% in adolescence, and 41.3% in mature adults (Schneider et al. 2014). There have been numerous investigators who have concluded that autism spectrum disorders can be quite prevalent in individuals with 22q11.2DS, with rates ranging from 12% to 50% (Antshel et al. 2007; Chudley et al. 1998; Fine et al. 2005; Niklasson et al. 2001; Schneider et al. 2014; Vorstman et al. 2006). Investigators have also examined how the social deficits observed in children with combined 22q11.2DS and autism

have also examined how the social deficits observed in children with combined 22q11.2DS and autism are the same or different than children with just autism. There are researchers that have proposed that autism in 22q11.2DS may be qualitatively quite different from idiopathic autism. Specifically, children with combined 22q11.2DS and ASD may have less joint attention, lower levels of make-believe play, and higher levels of repetitive behaviors than those with 22q112DS alone (Eliez 2007; Tang et

play, and higher levels of repetitive behaviors than those with 22q112DS alone (Eliez 2007; Tang et al. 2015). Thus, there is a consensus that children with 22q11.2SD should receive routine, standardized assessments for autism. Furthermore, early assessment for more serious psychopathology such as schizophrenia should also be conducted with children.

## Genetics  The pathogenesis of 22q11.2DS is understood relatively well (Grigorenko et al. 2010). Most cases of 22q11.2DS occur in the general population sporadically, or by chance, but only a portion of cases are inherited as an autosomal dominant trait (Swillen et al. 1998). The syndrome’s molecular mechanism is well studied on the cytogenetic level (i.e., at a resolution of hundreds of thousands of bp); the deleted material can range from the more commonly seen 3 Mb deletion (~90%) to the

of bp); the deleted material can range from the more commonly seen 3 Mb deletion (~90%) to the less commonly seen 1.5 Mb deletion (~7%), with the rest having an even smaller deletion with an undetermined minimal size. Deletions in individuals with 22q11DS are more frequently of maternal than paternal origin, 56% versus 44% (Hacıhamdioğlu et al. 2015). There appears to be no association between the parental age and the frequency of the deletion (Delio et al. 2013). The pericentromeric region of

parental age and the frequency of the deletion (Delio et al. 2013). The pericentromeric region of chromosome 22q, and in particular 22q11, is rich in regions of segmental duplication (SD). SD regions are stretches of the human genome that have one or several highly sequence-homologous (i.e., more than 90% of identical sequence) counterpart(s) elsewhere in the genome, either upstream or downstream on the same chromosome but also on other chromosomes. Such SDs are frequently associated with

on the same chromosome but also on other chromosomes. Such SDs are frequently associated with variability in copy number, even in the normal genome of healthy individuals, as well as with the formation of aberrations leading to genomic disease. In 22q11.2DS, the 3 Mb typical deletion has both of its breakpoints in prominent SD regions. Also, most of the subtypical or atypical deletions have at least one of their endpoints in one such segmentally duplicated stretch of 22q11. The 3 Mb deletion

least one of their endpoints in one such segmentally duplicated stretch of 22q11. The 3 Mb deletion region affects approximately 50 genes and 7 micro-RNAs, whereas the 1.5 Mb region 24 genes. The diminished dose of these genes, or their haploinsufficiency, likely compromises early morphogenesis of the organs impacted by the syndrome. Based on the research in mouse models, however, it appears that no single 22q11.2 deletion region is both necessary and sufficient for the expression of the major

no single 22q11.2 deletion region is both necessary and sufficient for the expression of the major features of the syndrome (Amati et al. 2007). Similarly, there appears to be no difference in the clinical severity of the disorder depending on the size of the deletion. Only specific facets of the general clinical manifestation of 22q11.2DS have been understood so far. For example, malformations of the heart and outflow tracts, as well as facial dysmorphia, palatal defects, hypoplasia of the

of the heart and outflow tracts, as well as facial dysmorphia, palatal defects, hypoplasia of the parathyroid glands and thymus, and dental, feeding, and swallowing problems in individuals with 22q11.2DS are believed to be associated with haploinsufficiency for the TBX1 (T-box-containing transcription factor 1) gene (Lindsay et al. 1999; Scambler 2010). However, other facets of 22q11.2DS remain etiological puzzles. For example, it is assumed that the syndrome and its psychiatric facets are

etiological puzzles. For example, it is assumed that the syndrome and its psychiatric facets are associated with one or more candidate genes in the deleted region (Prasad et al. 2008). Specifically, among these genes are COMT (the gene encoding catechol-O-methyl transferase), PRODH (the gene coding for proline dehydrogenase), GNB1L (a gene that encodes a protein of unknown function), ZDHHC8 (the gene coding for zinc finger and DHHC domain-containing protein 8), and ARVCF (the armadillo repeat

gene coding for zinc finger and DHHC domain-containing protein 8), and ARVCF (the armadillo repeat gene deleted in 22q11.2DS, which may have a role in cell-to-cell communication and intracellular transduction during embryonic development). Yet, the results of studies of these candidate genes are provocative, but inconclusive. Similar to the role of TBX1, it is possible that haploinsufficiency in specific other genes results in specific features of 22q11.2DS (Meechan et al. 2007). Thus,

in specific other genes results in specific features of 22q11.2DS (Meechan et al. 2007). Thus, haploinsufficiency for GP1BB might contribute to the mild thrombocytopenia seen in patients, and haploinsufficiency for COMT might contribute to cognitive aspects of the 22q11.2DS phenotype (Kobrynski and Sullivan 2007). The genes lost in 22q11.2DS, PRODH, TBX1, GNB1L, COMT, ARVCF, DGCR8, RANBP1, ZDHHC8, and PIK4CA, are located in or relatively close to regions of SD. Each of these genes or a combination

PIK4CA, are located in or relatively close to regions of SD. Each of these genes or a combination of them might contribute to the etiology of the syndrome. However, with the genomic technology that is now allowing high-resolution analyses (i.e., with a resolution of just a few 100 bp and even down to the level of a single bp, in contrast with conventional cytogenetic analyses that have a resolution no better than several tens of thousands and often as many as hundreds of thousands of bp), the

no better than several tens of thousands and often as many as hundreds of thousands of bp), the picture is changing dramatically. There is a variety of deletions founds in chromosome 22q11.2 that are largely submicroscopic, have a recognizable but often variable phenotype, and show recurrent breakpoints in unrelated individuals (McDonald-McGinn et al. 2015).

## Evaluation and Differential Diagnosis  When 22q11.2DS is suspected by a physician (most often due to the presence of heart defects, clefting, facial anomalies, hypocalcemia, or absent thymus), then the most reliable diagnostic tool is a blood test in which the deletion in chromosome 22q11.2 region is detected through the FISH test (Fluorescence In Situ Hybridization in Situ Hybridization) or by other higher-resolution molecular techniques. If no deletion is found in this specific region of

by other higher-resolution molecular techniques. If no deletion is found in this specific region of the chromosome, then additional chromosomal studies may be conducted to determine whether other types of chromosomal disorders might be present. Once the diagnosis of 22q11.2DS has been made in a child, then typically the parents are encouraged to take the FISH test so that it might be determined whether the child’s condition was inherited (Velo-Cardio-Facial Syndrome Educational Inc., 2009).

whether the child’s condition was inherited (Velo-Cardio-Facial Syndrome Educational Inc., 2009). Within the psychological domain, given the preponderance of early developmental delays (language disorders, intellectual disability, and learning disabilities) in addition to the possible emergence of significant behavioral (ADHD), psychiatric (anxiety, depression, and psychosis), and social difficulties (autism), it becomes critical for patients with 22q11.2DS to have repeated comprehensive

(autism), it becomes critical for patients with 22q11.2DS to have repeated comprehensive developmental and neuropsychiatric assessments across the life span.

## Treatment  Due to the highly varied needs of children and adolescents with 22q11.2DS, treatment approaches by necessity can be quite complex and multidisciplinary (Shprintzen 2008). The International 22q11.2DS Consortium (Bassett et al. 2011) has developed a range of “Practical Guidelines” for the management of patients with 22q11.2DS which takes into account the multisystemic nature of the disorder and the varied clinical considerations across the lifespan. Accordingly, common medical

disorder and the varied clinical considerations across the lifespan. Accordingly, common medical difficulties such as cardiac malformations or heart disease are managed through surgical interventions, and cleft palate repairs can be effectively resolved through palate repair. Similarly, severe feeding difficulties can be temporarily addressed through gastrostomy, but are most often remediated through behavioral feeding programs. For infants and toddlers with early developmental delays, including

behavioral feeding programs. For infants and toddlers with early developmental delays, including poor muscle tone and delayed speech, then referrals for early stimulation programs become critical. In later childhood, children with 22q11.2DS may require a range of special education services including speech and language therapy, occupational therapy, physical therapy, learning disabilities instruction, and even specialized school placements. Finally, as discussed, due to the high rates of

and even specialized school placements. Finally, as discussed, due to the high rates of behavioral and psychiatric conditions in children with 22q11.2DS, early evaluation is warranted through use of standardized instruments and structured observations. Pharmacological interventions to treat ADHD, mood disorders, and psychotic symptoms have been increasingly utilized with patients with 22q11.2DS (Shprintzen 2008), in addition to a range of evidence-based behavioral and cognitive behavioral

(Shprintzen 2008), in addition to a range of evidence-based behavioral and cognitive behavioral treatments (Tang et al. 2015) such as cognitive remediation training, applied behavioral analysis, social skills training, CBT for anxiety and depression, and parent training programs.

## Definition  Developmentally appropriate practice (DAP) refers to providing intervention in a manner that is individually appropriate and culturally relevant for the learner. This term was first introduced by Sue Bredekamp and the National Association for the Education of Young Children (NAEYC) in 1987 to warn early educators against the trend of pushing typically developing or gifted children too far too fast, or what some developmental psychologists referred to as “robbing children of their

far too fast, or what some developmental psychologists referred to as “robbing children of their childhood” with deleterious effects that may not show up until adolescence or later. It also has important implications for working with students who have cognitive deficits so that families and interventionists interact with people in a manner that is age appropriate and provide opportunities to people that are both age appropriate and matched with individual strengths and preferences. This concept

that are both age appropriate and matched with individual strengths and preferences. This concept of DAP is important when planning and implementing interventions for people with ASD. Developmentally appropriate interventions are those that take the student’s chronological as well as developmental age into consideration when identifying targets, materials, places, and strategies for intervention. Interventions that are developmentally appropriate also consider issues of cultural relevance and

Interventions that are developmentally appropriate also consider issues of cultural relevance and attempt to insure that the behaviors and skills selected as intervention targets are related to improving the quality of life for the person with ASD and his/her family.

## Definition  Developmental-pragmatic approaches to language intervention have a dual focus: (1) generating treatment goals and procedures based on the child’s stage of development as determined by what is known about typical trajectories and (2) generating treatment goals and procedures based on the tenets of social-pragmatic perspectives on language acquisition and use. The child’s developmental stage, rather than his or her chronological age, is considered not only in reference to language

stage, rather than his or her chronological age, is considered not only in reference to language but also in reference to those areas of development thought to be precursors and cocursors of language, such as symbolic-cognitive (e.g., play abilities) and social-emotional functioning (e.g., interacting with others). Three tenets of social-pragmatic models of language acquisition serve as the foundation for language intervention which is derived from this thinking: (1) language develops within

for language intervention which is derived from this thinking: (1) language develops within the context of the caregiver-child relationship, with an attuned and loving partner; (2) early developments in engagement, intentionality, and communication set the stage for the ability to comprehend and produce language; and (3) the use of language includes the capacity to know when to say what to whom.

## Historical Background  The field of speech-language pathology was dramatically impacted by the introduction of social-pragmatic models of language acquisition in the 1970s and early 1980s (Bates 1976; Bates et al. 1975; Bruner 1975, 1977; Dore 1975; Halliday 1975; Prutting 1982). With these models, the world of communication disorders began to reconsider fundamental questions, such as what defines a language user and how does a language disorder compromise these capacities. Interest in

defines a language user and how does a language disorder compromise these capacities. Interest in constructs such as intentionality, nonlinguistic communication, functions of language, social interaction, contexts of language learning and language use, discourse, and conversational skills represented a departure from earlier thinking in both language acquisition and language intervention. Taxonomies from the world of typical social-pragmatic development began to appear in language assessment

from the world of typical social-pragmatic development began to appear in language assessment protocols and intervention plans for children with autism spectrum disorders. These included taxonomies of prelinguistic development (communicative intentions), speech acts and functions of language (labels, comments, requests, greetings, etc.), and conversational analysis (initiating and maintaining topics, turn-taking, and contingency). These paradigms were immediately of interest to speech-language

turn-taking, and contingency). These paradigms were immediately of interest to speech-language pathologists (SLPs) working with children with autism spectrum disorders because for the first time, the nature of these children’s language and communication challenges was more adequately described and understood.

Once the breadth of pragmatic models of language acquisition and language use were integrated into the world of communication disorders, the work of speech-language pathologists expanded to include new dimensions of typical language development and language use and greater attention to the contexts of language learning and language use. The earlier “semantic revolution” which brought us from “form” (i.e., the structure of language) to “content” (i.e., the meanings of language) led quite

“form” (i.e., the structure of language) to “content” (i.e., the meanings of language) led quite quickly to a “pragmatic revolution” which required professionals to once again rethink the nature and the boundaries of their work as they added a third component to the definition of language, namely, “use.” Perhaps as important was the shift in thinking about the role of the SLP, from the teacher of language to the partner in the language acquisition process. Encouraging the child’s initiation and

language to the partner in the language acquisition process. Encouraging the child’s initiation and intentionality was seen as more important than obtaining responses from the child. Finally, the notion of therapy contexts expanded to potentially include all the contexts of the child’s life, from home to school to play, with a variety of partners, both in terms of number and age (from one adult to groups of peers).

The focus on the interpersonal functions of language was particularly attractive to clinicians who were working with children who could talk but did not use language appropriately for the typical range of communicative intentions (commenting, reporting, requesting answers). In fact, the new taxonomies provided ways of understanding the unconventional linguistic patterns used by some children on the autism spectrum. Prizant and Duchan (1981) noted that children with autism were often expressing

autism spectrum. Prizant and Duchan (1981) noted that children with autism were often expressing typical functions of language with echolalic utterances. Obviously, the relationship between form and function was idiosyncratic (e.g., the child says “Do you want a drink?” to indicate that he or she wants a drink), but nonetheless, the utterances were intentional and certainly could not be simply discounted as inappropriate. The “discovery” that echolalic language was intentional led to shifts in

as inappropriate. The “discovery” that echolalic language was intentional led to shifts in intervention procedures from those which suggested ignoring or discouraging echolalia to those that honored it. The primacy of function over form, a direct outgrowth of pragmatic models, was a theme that resonated with SLPs who were working with children who were nonverbal (e.g., standing in the corner to communicate anxiety) and/or using unconventional means of communication (e.g., repetitively asking

communicate anxiety) and/or using unconventional means of communication (e.g., repetitively asking questions to deal with transitions). Although the impact of developmental-pragmatic models of language acquisition had a lasting effect on language assessment and intervention with both children and adults with a range of language disorders, many would agree that speech and language intervention with children with autism spectrum disorders was particularly effected by embracing this model. The

with children with autism spectrum disorders was particularly effected by embracing this model. The nature and breadth of pragmatic views of language spoke directly to the nature and breadth of the children’s challenges, providing new directions for SLPs working with this group of children.

## Rationale or Underlying Theory  A developmental-pragmatic model (DPM) rests on the universals, processes, and facts of typical language acquisition. This information clarifies what is learned by a typically developing child at each point in development, resulting in the child’s acquisition of a symbolic language system and his or her success as a social communicator. The speech-language pathologist who embeds his or her thinking in this theory believes that the language acquisition of

pathologist who embeds his or her thinking in this theory believes that the language acquisition of children on the autism spectrum includes both typical and atypical parameters, all of which are best understood by reference to the universals of speech, language, and communication development. Developmental-pragmatic models of language intervention pay particular attention to the social underpinnings of language acquisition and use. While encompassing the interest in the form of language

of language acquisition and use. While encompassing the interest in the form of language (phonology, morphology, and syntax) and the content of language (semantics), pragmatic thinking leads us to consider the broader interpersonal context of language acquisition and the early ability of the communicator to use gestures, facial expressions, and words for social interaction purposes. Thus, the emphasis on context, both of language learning (i.e., caretaker-child interactions) and language use

on context, both of language learning (i.e., caretaker-child interactions) and language use (e.g., how the intent of our utterances is understood depending on who is being spoken to, what the setting is, and the knowledge of the participants), is considered developmentally from birth to adulthood. The fact that some children on the autism spectrum have strengths in form and content with considerable deficits in pragmatics speaks to the components of language necessary to be a successful and

deficits in pragmatics speaks to the components of language necessary to be a successful and conventional language user. Regardless of the specific discipline, developmental approaches begin with the assumption that all strategies of intervention, regardless of the target group or desired outcome, can be derived from normative theories of development. That is to say, the general principles of development apply to all children independent of their biological variability or the range of

of development apply to all children independent of their biological variability or the range of environments in which they live (National Research Council and Institute of Medicine 2000). We might add to this that goals of intervention can best be derived from normative theories of development as well and that this is particularly compelling when considering children with deficits in social-pragmatic aspects of language.

This overarching understanding of developmental approaches paired with the specifics of pragmatic thinking served as a rich resource for recasting the assessment and intervention of children on the autism spectrum. The emphasis in pragmatic approaches on the intersect between the capacity to interact and the capacity to comprehend and produce language immediately resonated with the challenges and needs of children on the autism spectrum. The models presented in the literature by Bates et al.

needs of children on the autism spectrum. The models presented in the literature by Bates et al. (1975); Dore (1974, 1975); Halliday (1975); Bloom et al. (1976); Snow (1973, 1978); etc., offered the theory and frameworks for reconsidering what and how we were teaching children with autism spectrum disorders to learn and use language. SLPs began to use and adapt the taxonomies which appeared in the research literature on topics such as the speech acts expressed by young children using single

the research literature on topics such as the speech acts expressed by young children using single words, the early development of conversational skills, and the nature of adult input to language-learning youngsters. As this movement continued and moved more deeply into the world of joint attention, early relationships, and affective range (Tomasello 1988; Greenspan and Wieder 1998; Mundy and Sigman 2006), speech-language pathologists continued to integrate the expanding theory into their work

2006), speech-language pathologists continued to integrate the expanding theory into their work with children with challenges (Prizant et al. 2006). More and more intervention programs began to address the social engagement issues of children on the autism spectrum, and, in fact, approaches which differed considerably in the strategies and contexts of intervention now share the emphasis on interaction, reciprocity, and shared attention. The fact that typically developing infants can easily

reciprocity, and shared attention. The fact that typically developing infants can easily participate in attuned, communicative exchanges and that children with autism spectrum disorders find this developmental step so challenging is a universal concern in the educational and therapeutic planning for children on the autism spectrum.

Once again, while many of the pragmatic constructs speak to the process of language acquisition and, thus, are relevant for intervention programs for all children with delays and disorders in speech and language development, the nature of autism spectrum disorders has led to a particular interest in this body of work. The following list of principles reflect the underlying theory of a developmental-pragmatic model of language intervention (Gerber 2003) and are thought to serve as the basis for

model of language intervention (Gerber 2003) and are thought to serve as the basis for and rationale for intervention goals and procedures:

*   Language is learned in the context of spontaneous, natural everyday interactions between the caregiver and the child.
*   The child’s language acquisition is embedded in his or her cognitive, affective, and social development and life.
*   The development of communicative intention-ality precedes the development of language.
*   Prelinguistic developments in cognitive, social, emotional, and communicative domains precede the comprehension and production of language.

*   The child’s communicative interactions include many opportunities to play speaker-initiator and listener-responder discourse roles.
*   Both typically and many atypically developing children move through the same general stages of linguistic and communicative development.
*   The specifics of language development (e.g., rate, style, strengths) are characterized by indi-vidual variation.

*   Imitation may play a role in language learning for some children; its role in the development of communication is generally recognized.
*   The child plays an active role in his or her language development – meaningful and joyful interactions with the world of objects and the world of people serve as the context for the development of language.

## Goals and Objectives  Operationalizing developmental-pragmatic goals and objectives can be thought of in a number of ways, all of which differ from traditional perspec-tives on how to view the basic components of language intervention. These components include what the goals of intervention are, who the partic-ipants are during intervention, what procedures should be used, where the therapy takes place, and what role the adult plays during the interac-tion. A continuous thread from

takes place, and what role the adult plays during the interac-tion. A continuous thread from paradigms of assessment to paradigms of intervention are char-acteristic of language intervention programs which are based on developmental social-pragmatic theories of language acquisition (Gerber and Prizant 2000; Prutting and Kirschner 1987). One of the most significant impacts of prag-matic models on the world of language disorders was the rethinking of the intervention goals addressed with children

world of language disorders was the rethinking of the intervention goals addressed with children who had challenges in the acquisition of speech, language, and commu-nication. The fact that nonverbal communication including gestures, facial expression, body lan-guage, and vocalizations were now considered appropriate goals of intervention represented one significant departure from earlier views which focused on the production of words and sentences. For those children who had not yet developed

focused on the production of words and sentences. For those children who had not yet developed the capacity to communicate through nonlinguistic forms, the importance of that step in the develop-mental trajectory on the way to language was more fully recognized. In fact, the notion that nonlinguistic communication continues to be a goal of therapy even for children who are verbal was welcomed by clinicians who were working with children on the autism spectrum who could talk but did not use

by clinicians who were working with children on the autism spectrum who could talk but did not use pointing and showing, eye gaze, and intonation to communicate their intentions.

Further, for children who are at very early developmental stages, pragmatic goals address the social-emotional precursors to language. These include increasing engagement in back and forth adult-child interactions; facilitating affective exchanges between the adult and the child using nonlinguistic communicative forms; increasing periods of joint attention with care-givers; communicating a range of intentions using differentiated vocalizations, pointing, eye gaze, and word approximations; and

of intentions using differentiated vocalizations, pointing, eye gaze, and word approximations; and facilitating social referencing. Of course, precursory goals related to the content of language and the form of language would also be a part of every child’s intervention plan. At these early stages, goals for the caregivers include increasing their responsive-ness to the child’s potentially communicative attempts and fostering reciprocal interactions, using the child’s current repertoire of

attempts and fostering reciprocal interactions, using the child’s current repertoire of behaviors. Of particular relevance for children with autism spectrum disorders was the notion of inten-tional communication and functions of language which moved to center stage in language interven-tion as a result of the understanding of pragmatic models of language development. The fact that this group of children did not use their non-linguistic or linguistic systems to communicate a range of intentions

did not use their non-linguistic or linguistic systems to communicate a range of intentions had been documented in the research and confirmed by clinical experience. Thus, rather than moving on to the development of larger vocabularies and longer sentences, clini-cians began to facilitate the use of the children’s existing systems for functions beyond requests, such as greetings, comments, and social routines. The idea that children needed to acquire not only the forms of language but also the

routines. The idea that children needed to acquire not only the forms of language but also the interpersonal functions led to an expansion of goals and objec-tives that has had considerable longevity. For children whose nonlinguistic and linguistic systems are somewhat unconventional, interven-tion goals begin with an attempt to analyze the form-function relationship in that child’s system. One finding from this type of analysis has been that a child who does not use conventional lan-guage may

finding from this type of analysis has been that a child who does not use conventional lan-guage may very well be communicating inten-tions. Unconventional behaviors, echolalia, delayed echolalia, and scripts are often attempts to initiate conversation and/or to communicate particular functions and meanings of language. In terms of a less conventional nonlinguistic sys-tem, if a child’s tendency to put his or her face close to that of another person is seen as an attempt to start an interaction,

put his or her face close to that of another person is seen as an attempt to start an interaction, the function of the behavior can be acknowledged while more con-ventional forms are modeled (“let’s play”). Responding in this way to a child’s behaviors, with an eye toward the function they may serve, came from the focus on function in the pragmatic analysis of language and communication. Simi-larly, when working with a child who was using a less conventional linguistic system, clinicians began

when working with a child who was using a less conventional linguistic system, clinicians began to understand the importance of imbuing the child’s echolalic utterances and scripting with communicative intent. This response to the child turns a somewhat ambiguous communicative moment into a productive one and again illus-trates how goals informed by pragmatic thinking were drastically different from more traditional ones.

Developmental-pragmatic goals are deter-mined by assessing the child’s developmental stage of language acquisition and strengths and challenges in social-pragmatic domains of devel-opment. Some examples of typical developmental-pragmatic goals for children func-tioning at earlier stages of development might include the following, written from the perspec-tive of what the SLP will focus on:

*   To facilitate the child’s interpersonal engage-ment and emotional range (e.g., happy, sad, curious, frustrated, angry), with nonlinguistic and/or linguistic forms of communication
*   To facilitate the child’s participation in joint attention interactions with an adult, with non-linguistic and/or linguistic forms of communication
*   To facilitate the child’s range of communica-tive intentions, with nonlinguistic and/or lin-guistic forms of communication

*   To facilitate the use of spontaneous, self-initiated communication, with nonlinguistic and/or linguistic forms
*   To expand the range of forms used to commu-nicate, including both nonlinguistic forms (gestures, signs, visual systems) and linguistic forms (vocalizations, intonation patterns, words, utterances)
*   To facilitate the use of social referencing, with nonlinguistic and/or linguistic forms of communication

*   To facilitate the child’s intention to communi-cate in a range of naturalistic contexts (at home, on the playground, with adults, with peers)
*   To respond to all of the child’s attempts to communicate whether they are conventional or unconventional
 For children at higher developmental stages of language, typical developmental-pragmatic goals might include:
 *   To facilitate participation in conversational exchanges, playing both the speaker and the listener roles

*   To facilitate the use of contingent responses during conversational exchanges
*   To facilitate an understanding of the listener’s perspective and the need to modify one’s non-linguistic and linguistic communication for a range of partners
*   To facilitate the ability to repair communica-tion breakdowns *   To facilitate peer interactions, first in dyadic interactions and eventually in larger groups

*   To facilitate the coordination of conventional nonlinguistic and linguistic systems to commu-nicate intentions

It should be noted that depending on the child’s developmental stage of language, simultaneous goals addressing the comprehension and produc-tion of language would be included in an inte-grated plan of language intervention. Similarly, social-emotional, cognitive-symbolic, and regula-tion goals will necessarily be considered in all intervention plans that are addressing the further development of language and communication.

## Treatment Participants  One of the most vivid and lasting effects of the pragmatic revolution on the field of speech and language was the change of thinking about who the treatment participants should be during inter-vention, Here, again, this notion had particular resonance for children on the autism spectrum because of the nature of their difficulties in inter-personal interactions. With the early and continuing interest in prag-matic models and social-emotional approaches to working with

early and continuing interest in prag-matic models and social-emotional approaches to working with children with developmental challenges, SLPs have been exposed to a deep-ened understanding of the nature of the caregiver-child relationship. This relationship sets the stage for the child’s healthy development in all areas of functioning, including the devel-opment of the comprehension and production of language. SLPs began to think not only of what was learned in the prelinguistic period but

of language. SLPs began to think not only of what was learned in the prelinguistic period but who was propelling the development and why this relationship was key to the process. The notion that more of the “work” in language intervention should be done with the mother or primary care-giver and the child, rather than the therapist and the child, continues to be difficult to realize dur-ing intervention and, yet, is a clear implication of pragmatic models of language acquisition. Even in settings

and, yet, is a clear implication of pragmatic models of language acquisition. Even in settings where it is easier to work with the caregiver, such as in early intervention conducted in the child’s home, practitioners are not necessarily comfortable with the idea of “coaching” a parent during an interaction and, often, prefer to have the parent observe as the therapist interacts with the child. While under-standable, this is not in sync with the research now spanning more than 30 years,

While under-standable, this is not in sync with the research now spanning more than 30 years, suggesting that the caregiver-child interaction is where the “action” is relative to setting the stage for development.

Further, because pragmatic models of lan-guage acquisition underscore the fact that lan-guage use occurs across contexts with different partners, language intervention which has its roots in this model embraces the notion that the child’s ability to use language must be addressed in a range of real-life situations, including his or her other interaction with fam-ily, teachers, and peers. Remembering that prag-matics refers to the ability to know what to say when to whom, pragmatic

Remembering that prag-matics refers to the ability to know what to say when to whom, pragmatic interventions go beyond the traditional therapy room and the SLP-child interaction. The child’s interactions with typical and atypical peers must be built into the intervention planning. In fact, quite a few programs have been developed where typical peers coach their classmates who are on the autism spectrum to enhance the possibility of more frequent and successful exchanges (Kohler et al. 2005).

spectrum to enhance the possibility of more frequent and successful exchanges (Kohler et al. 2005). Prior to the introduction of developmental-pragmatic models, the fact that a successful lan-guage user can communicate effectively with many different partners was not recognized as a potential language intervention goal. This notion led to one of the most significant shifts in the intervention paradigms of speech-language pathol-ogists. Improving the child’s ability to com-municate with different

of speech-language pathol-ogists. Improving the child’s ability to com-municate with different partners requires the SLP to consider the child’s interactions with every person in his or her life and to potentially use these interactions as the contexts for language therapy.

## Treatment Procedures  The use of developmental-pragmatic models to generate treatment procedures requires an understanding of the way language acquisition progresses and language use is realized in authentic communicative contexts. As men-tioned in the previous section, implications from a developmental-pragmatic model affect decisions about all the components of therapy, not only what the goals of intervention are and who the participants are during intervention but also what procedures

goals of intervention are and who the participants are during intervention but also what procedures will be used during treat-ment. In this discussion, intervention procedures include intervention strategies, intervention contexts, and the role of the adult during the interaction.

The following list captures the nature of strat-egies generated from developmental-pragmatic models of language use:
 *   Provide many opportunities to facilitate sustained engagement and reciprocal interac-tions, both nonlinguistically and linguistically.
*   Provide many opportunities to expand shared attention and more consistent responsiveness to the communicative partner.
*   Interpret all of the child’s behaviors, conven-tional and unconventional, as intentional and meaningful.

*   Maintain a reciprocal flow by treating all of the child’s behaviors as communicative as you alternate turns in the interaction.
*   Model the use of nonlinguistic and linguistic forms of communication to express the child’s meanings, messages, and intentions, not yours.
*   Engineer the context so that the child has an opportunity to play both initiator and responder roles in the “conversation.”
*   Engineer “turn-taking,” by expectancy, waiting, and nonverbal communication.

*   Engineer “turn-taking,” by expectancy, waiting, and nonverbal communication.
*   Teach language within the context of natural interactions and discourse. *   Embed language training in contexts that are familiar to the child relative to meaning and affectively laden.
*   Reduce the complexity of your language input while maintaining the “grammar” of language, the melody, and the interactive flow of communication.

*   Pair language with the child’s actions, inter-ests, agenda; timing and contextual support are critical at early stages of language learning.
*   Join in the meaning and affective tone of the child’s script. *   Teach language when the cognitive, social, affective, and pre- and/or corequisites are in place.
*   Teach the child’s parents, teachers, and thera-pists how best to facilitate language throughout the child’s daily life.

*   Teach language with words and silence. *   Teach language when the interaction is flowing. *   Teach language by matching and meeting the child and then “up the ante.” *   Teach pragmatic skills within the context of natural conversation. *   Engineer natural opportunities for promoting nonverbal pragmatic abilities such as proxe-mics, body language, gestures, and facial expressions.

In reference to intervention contexts, pragmatic views of language suggest that all the contexts of a person’s life are of interest when we are studying and supporting language use. Much like the idea of different partners, pragmatic models are rooted in the idea of the range of contexts which make up the person’s life and the variations in both non-linguistic (setting, activity, participants) and lin-guistic (prior discourse) aspects of each context. As a result, attempts were made to expand

lin-guistic (prior discourse) aspects of each context. As a result, attempts were made to expand the notion of “therapy context” to include those activ-ities that reflected the child’s typical day (lunch, recess, soccer, classroom, etc.). Understanding that every moment is a poten-tial language intervention moment pushed the idea of context in language treatment beyond the previous discrete boundaries. In this view, every interaction offers the child an opportunity to learn about language use

In this view, every interaction offers the child an opportunity to learn about language use and to practice how to be a successful language user. For example, a 10-year-old child on the autism spectrum, M., who the author sees for language intervention, was inter-ested in interacting with a 2-year-old boy, J., who he met each week in the waiting room of the clinic. In his attempt to interact with this toddler, M. often hugged J. a bit too vigorously or spoke to him a bit too loudly. Needless to

this toddler, M. often hugged J. a bit too vigorously or spoke to him a bit too loudly. Needless to say, the 2-year-old moved away from M. and backed into his caregiver’s lap. In order to help M. express his natural interest in interacting with the young child and to have a more successful experience, the clinician practiced with him how he might approach the boy (i.e., from a distance) and what he might say to him (e.g., show him a toy). In fact, from a pragmatic point of view, the SLP

what he might say to him (e.g., show him a toy). In fact, from a pragmatic point of view, the SLP welcomes the opportunity to see how the child functions in different contexts in his or her attempt to make the therapeutic experience representative of the child’s typical interactions and to address those missteps that may be interfering with his positive opportunities for interaction. Finally, in reference to the role of the adult during the interaction, pragmatic models of lan-guage acquisition

to the role of the adult during the interaction, pragmatic models of lan-guage acquisition and use suggest that the clini-cian assume more of a partner and less of a teacher role during intervention. The adult is seen as shar-ing the communicative interaction with the child, not directing it. Often, the idea of “following the child’s lead” is used to help parents and profes-sionals understand that the child’s ideas and inten-tions should take precedence over the adult’s. With the goals in mind,

the child’s ideas and inten-tions should take precedence over the adult’s. With the goals in mind, the adult will support, scaffold, and facilitate development, always beginning from where the child is and engaging in a dynamic that is more reciprocal and less adult led. The full impact of a developmental-pragmatic approach can be seen as therapy sessions which reflect this thinking, where adults are watching, waiting, observing, and then determining based on the child’s actions, behaviors,

are watching, waiting, observing, and then determining based on the child’s actions, behaviors, vocalizations, body movements, and words how the next steps in development can be encouraged.

## Efficacy Information  Although many language intervention programs integrate aspects of developmental-pragmatic models of language, two programs in particular reflect the basic tenets of this perspective. The Hanen Program, More Than Words (Sussman 1999), focuses on teaching parents to use respon-sive strategies that promote social interaction and, ultimately, language development. The fact that the training is designed to support the primary caregivers in their interactions with their

that the training is designed to support the primary caregivers in their interactions with their children places this program at the heart of pragmatic thinking. Recent studies (McConachie et al. 2005; Girolametto et al. 2007) have shown that parents who participated in the More Than Words program used more responsive interaction strate-gies than the control group of parents. Moreover, gains in vocabulary, frequency of communication, and/or participation in turn-taking routines were noted in

vocabulary, frequency of communication, and/or participation in turn-taking routines were noted in the children.

Other studies have also investigated the effects of responsiveness training on the caregivers’ interactive style and the resulting effects on their child’s social interaction and communication. Specific improvements in joint attention, initia-tion of communication, periods of engagement, and expressive language have been noted in chil-dren whose parents became more responsive (Aldred et al. 2004; Baker et al. 2010; Mahoney and Perales 2003, 2005; Siller and Sigman 2002). The SCERTS (Social

Baker et al. 2010; Mahoney and Perales 2003, 2005; Siller and Sigman 2002). The SCERTS (Social Communication, Emo-tional Regulation, and Transactional Support) program developed by Prizant et al. (2006) repre-sents an educational program which embraces the core components of developmental-pragmatic frameworks. This program emphasizes functional, developmentally appropriate goals and objectives which are addressed in meaningful and purposeful activities throughout the child’s day. The child’s

which are addressed in meaningful and purposeful activities throughout the child’s day. The child’s individual differences, including learning style and interests, are embraced; the family, educators, and clinicians are seen as a collaborative team. The description of social communication in the SCERTS program (Prizant et al. 2006) as the “development of spontaneous, functional commu-nication, emotional expression, and secure and trusting relationships with children and adults” speaks to the

emotional expression, and secure and trusting relationships with children and adults” speaks to the priorities of all pragmatically ori-ented programs. Similar to More Than Words (Sussman 1999), the fact that the family and pro-fessionals are taught to respond to the child’s needs and interests is derived from the focus in developmental-pragmatic models on the partner’s roles in the child’s acquisition of language. Prizant et al. (2010) provide many references to support the positive outcomes

of language. Prizant et al. (2010) provide many references to support the positive outcomes of training in social com-munication, with approaches that range from those that are more behavioral to those that are more representative of developmental-pragmatic ones (Kaiser et al. 2000; Wetherby and Woods 2006).

## Outcome Measurement  Measuring progress in pragmatic goals and objec-tives has always presented its own set of chal-lenges for SLPs. The very nature of pragmatics speaks to the way language use varies relative to changing aspects of the context such as the par-ticipants, the setting, nonlinguistic supports, ongoing discourse, etc., making measurement for this area of language more complicated than others. Perhaps, the best way to think about the emergence of pragmatic behavior is relative

than others. Perhaps, the best way to think about the emergence of pragmatic behavior is relative to a continuum of contexts of the child’s life, with outcomes measured within specific contexts (e.g., the child’s initiation of communication with one particular peer during toy play). From a pragmatic perspective, intervention progress can only be thought of with an understanding of the dimensions of natural contexts and real-life partners.

The outcome measurements of developmental-pragmatic interventions span a wide range of behaviors. Unlike most other approaches, these include both the child’s and the partner’s behav-iors, as the pragmatic approach is anchored in the caregiver’s role in creating interactive exchanges. In fact, the responsiveness of the caregiver to the child’s behaviors is seen as one of the most impor-tant aspects of interaction to measure. Given the underlying theory of typical language learning, clinicians

of interaction to measure. Given the underlying theory of typical language learning, clinicians who are working from this framework will want to track the parent’s ability to sensitively respond to all of the child’s communicative attempts (not just those that involve spoken lan-guage). Parent responsiveness provides more opportunities for social interaction and, ulti-mately, the acquisition of language.

All of the goals and objectives indicated in the previous section are easily translated into out-comes to measure (occasions of intentional com-munication, use of a range of speech acts, ability to engage in turn-taking exchanges, etc.). Although behavioral principles could be used to conceptualize how to measure a new behavior (e.g., 80% criterion), a developmentalist may be more comfortable with a continuum of criteria, ranging from “emerging” to “achieved.” Devel-opmental thinking implies

a continuum of criteria, ranging from “emerging” to “achieved.” Devel-opmental thinking implies that measures will mirror how typical development proceeds grad-ually over time rather than thinking in terms of the use of a particular behavior in 8 out of 10 trials. Developmental-pragmatic models rely heavily on checklists of targeted behaviors, ques-tionnaires, naturalistic observation, language sampling, and semistructured assessment to mea-sure the child’s progress in selected goals and

sampling, and semistructured assessment to mea-sure the child’s progress in selected goals and objectives. The frequency of assessment will vary with the program and the system, with some measuring outcomes on a daily or weekly basis, and others over a longer span of time. When outcome measurement is being used to determine the success of a particular step in the program, more frequent assessment leads to more frequent modification of the parameters of the treatment plan. Finally, the SLP who is

leads to more frequent modification of the parameters of the treatment plan. Finally, the SLP who is work-ing from a developmental-pragmatic framework will want to periodically measure the child’s progress across the contexts of his or her life, as a reflection of the ability to use language in the learning and social interactions that make up his or her day.

## Qualifications of Treatment Providers  The majority of treatment providers for developmental-pragmatic approaches to language intervention are speech-language pathologists. Those SLPs who are working directly with par-ents will need additional training in how to teach strategies and procedures for affecting change in the caregivers’ interactive styles (e.g., Hanen pro-grams). Other more broadly based developmen-tally oriented models, such as the Developmental, Individual Difference,

broadly based developmen-tally oriented models, such as the Developmental, Individual Difference, Relationship-Based (DIR) approach (Greenspan and Wieder 1998), include training components in their certificate process for professionals from a range of disciplines who want to learn how to “coach” parents effectively. Once SLPs begin working with parents closely, they are often aware of the need for further train-ing in counseling in order to deal with the emo-tional issues typically and

need for further train-ing in counseling in order to deal with the emo-tional issues typically and understandably raised by the caregivers. In addition, SLPs working in this model often collaborate with teachers to help them imple-ment a developmental-pragmatic approach in the classroom. The SLP will be called on to help other professionals shift their thinking to implement the goals and strategies in the con-texts of the child’s academic and social life. Here, again, the

the goals and strategies in the con-texts of the child’s academic and social life. Here, again, the developmental-pragmatic approach requires additional programming and planning on the part of the SLP as the work moves beyond the therapy walls and out into the child’s everyday world.

## Definition  Dexedrine is a stimulant medication useful for the treatment of ADHD symptoms and narcolepsy. It is available in tablets or extended-release capsules. Side effects tend to be mild and include insomnia, loss of appetite, weight loss, headaches, dry mouth, and erectile dysfunction. It can also pro-duce transient increases in blood pressure and may have an effect on seizure threshold and cer-tain heart arrhythmias.

## Definition  Dextroamphetamine is a stimulant medication useful for the treatment of ADHD symptoms and narcolepsy. It is available in tablets or extended release capsules. Side effects tend to be mild and include insomnia, loss of appetite, weight loss, headaches, dry mouth, and erectile dysfunction. It can also pro-duce transient increases in blood pressure and may have an effect on seizure threshold and cer-tain heart arrhythmias.

## Definition  As used in medicine (including psychiatry), a diagnosis is determined as part of a diagnostic process in the attempt to identify a specific disor-der. Diagnoses are used in many ways and for different purposes. As both a term and a process, the issue of diagnosis is very much related to issues of classification. Indeed, the word diagno-sis comes through Latin and Greek sources which have to do with understanding/distinguishing things. In clinical medicine, the assignment of a

have to do with understanding/distinguishing things. In clinical medicine, the assignment of a diagnosis often involves various tests, examina-tions, and so forth; the diagnosis typically guides treatment. In addition, diagnoses have other uses, e.g., in public health, in establishing eligibility for services, and so on. Some special issues arise with respect to psychiatric diagnosis and are discussed subsequently (see also ▶“DSM-IV” entry).

## Historical Background  Although diagnoses have been used since antiq-uity, it was only as the causes of various medical illness began to be identified in the 1800s that attempts were made to study the issue more sys-tematically, e.g., in relation to causes of death. This effort took place both in Europe and the USA originally focusing on causes of mortality but gradually expanding to include a range of diseases and injuries. This effort results in what is now the International Classification

range of diseases and injuries. This effort results in what is now the International Classification of Dis-eases (ICD-10). In psychiatry, early efforts to assign diagnoses were limited and classification schemes highly theoretical in nature; this limited their use more generally and with clinicians who did not share similar theoretical orientations. This shifted dramatically with the 3rd edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-III) (American

of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-III) (American Psy-chiatric Association 1980) which adopted an athe-oretical approach and which quickly came to dominate psychiatric diagnosis throughout the world.

## Current Knowledge  Diagnosis is intimately related to issues of classi-fication. The tendency to engage in the latter activity is an intrinsically human activity that has the potential to facilitate observation and then help generate general principles and hypotheses. When approaches to classification are shared, communication is enhanced. In medicine in par-ticular, the assignment of some specific label to a condition may itself be a source of relief to the patient or family members since it

label to a condition may itself be a source of relief to the patient or family members since it is often (mistakenly) assumed that having a label implies an understanding of etiology and specific treat-ments. As with any human construction, diagnos-tic labels can be misused. While official systems like DSM-IV or ICD-10 tend to be organized around categories, other approaches, e.g., using dimensions of function/dysfunction, could also readily be used. Classification systems vary depending on their

of function/dysfunction, could also readily be used. Classification systems vary depending on their purpose but to be generally useful that must be amenable to ready and reliable use by a range of individuals. In the past, theoret-ically based approaches to classification were common but now have given way to more “phe-nomenologically based” approaches.

A number of misconceptions regarding issues of diagnosis and classification should be noted: (1) by itself, deviant behavior does not need to imply a disorder, and (2) diagnoses do not neces-sarily have to have a biological base even when symptoms are expressed somatically (e.g., mal-adaptive personality traits can be a disorder, and severe psychological stress can give rise to a range of persistent physical symptoms). Issues for classification arise from numerous sources. One has to do with the

physical symptoms). Issues for classification arise from numerous sources. One has to do with the primary goal(s) of classification (e.g., to enhance research or to facil-itate clinical work). Also, there are some special issues for classification in relation to difficulties of childhood onset. The two major classification sys-tems for psychiatric and developmental disorders (DSM-IVand ICD-10) adopt approaches that are in some ways similar and in other ways quite differ-ent. Although it is often

approaches that are in some ways similar and in other ways quite differ-ent. Although it is often assumed that some ideal classification system must exist in reality, many different factors impact approaches to diagnosis. To complicate things further, different apparent etiologies might result in rather similar clinical pictures, while sometimes the same etiological fac-tor is associated with a wide range of clinical out-comes; often intervention is much more concerned with the expression of the

range of clinical out-comes; often intervention is much more concerned with the expression of the clinical problem rather than its cause. With a few interesting exceptions (e.g., reactive attachment or post-traumatic stress disorders in DSM-IV), etiologies have typically not been specified.

Difficulties of childhood onset present special problems for classification and diagnosis. Develop-mental factors must be considered, e.g., in relation to the ways they may impact symptom expression or in the ways the symptoms may interfere with development. The use of a multiaxial approach helps in dealing with this problem. In the past, theoretically based approaches to classification were common but now have given way to more “phenomenologically based” approaches. Contextual factors are of

but now have given way to more “phenomenologically based” approaches. Contextual factors are of great importance in understanding the clinical expression of condi-tions in children, i.e., family, school, and ethnic or cultural background may significantly impact the clinical presentation. These issues are often most complicated in very young children where disentangling child-maternal difficulties can sometimes be quite difficult. It should also be noted that disorders not individuals are

can sometimes be quite difficult. It should also be noted that disorders not individuals are classified (failure to do this results both in problems of stigmatization and potential adverse effects of labeling). Having one problem may increase risk for other difficulties (what is termed comorbidity). It has been noted that for individuals with intellec-tual disability, there has often been a tendency to overlook other problems (what is termed “diag-nostic overshadowing”). There are different

to overlook other problems (what is termed “diag-nostic overshadowing”). There are different approaches to the problem of comorbidity, and the problem is a special challenge for childhood-onset disorders since having one problem may contribute to risk for another one.

## Future Directions  Particularly in the area of psychiatry, DSM-III marked a watershed event in improving diagnos-tic reliability and significantly advanced research in the field. In autism and related disorders, sim-ilar changes have occurred with diagnostic sys-tems becoming more and more data based and, in turn, more likely to advance research in general. New knowledge in the areas of genetics, biologi-cal models, and identification of end phenotypes or intermediate endophenotypes may

biologi-cal models, and identification of end phenotypes or intermediate endophenotypes may further advance work on these disorders. As noted in detail elsewhere (e.g., Smith et al. 2015), the new DSM-5 definition has resulted in a significant narrowing of the diagnostic concept.

## Definition  Important considerations when diagnosing autism spectrum disorder (ASD) in individuals with low mental age (low MA), defined as verbal and nonverbal functioning below a 12-month developmental level.

## Historical Background  ASD can be challenging to diagnose in very young children, as many of the defining charac-teristics of the disorder (e.g., immature peer relationships, limitations in reciprocal conversa-tional skills, stereotyped interests, or repetitive patterns of behavior) are age- or development-specific. That is, consistent with the timing of social communication milestones in typical development, these skills are not usually seen in infants or toddlers, nor are they apparent in

development, these skills are not usually seen in infants or toddlers, nor are they apparent in older individuals with low MA (Crais et al. 2006; Ventola et al. 2006; Vig and Jedrysek 1999; Watson et al. 2003). Comorbid intellectual impair-ment further complicates the diagnosis of ASD, as certain behaviors observed in children under age 5 years with global developmental delay (GDD), or in older children and adults with intellectual disability (ID), mimic the symptoms commonly associated with

children and adults with intellectual disability (ID), mimic the symptoms commonly associated with ASD (e.g., complex motor man-nerisms, immature social skills) (Brereton et al. 2002; Gardner et al. 2018). Current estimates say that the prevalence of co-occurring ID in ASD is approximately 31% (CDC 2018). Individuals with ASD and a comorbid cognitive delay appear to be a particularly severe subgroup, as they tend to make limited developmental gains despite intervention, and they exhibit more

as they tend to make limited developmental gains despite intervention, and they exhibit more significant adaptive, social, and behavioral deficits than peers without intellectual impairment (Gardner et al. 2018; Hinnebusch et al. 2017). Despite the challenge of identifying ASD with co-occurring cognitive and developmental delays, it is possible to diagnose ASD in low MA. Furthermore, it is particularly important to quickly (i.e., early in development) and accurately diagnose ASD in this very

important to quickly (i.e., early in development) and accurately diagnose ASD in this very low-functioning population in order to facilitate access to appropriate (i.e., intensive or adapted) intervention services and generate research-informed prognoses for affected families.

## Current Knowledge  Although the literature regarding ASD with low MA is somewhat limited, recent research has largely focused on three primary topics that require special consideration in this population: (a) differentiation of ASD and global delays; (b) application of commonly used diagnostic tools; and (c) developmental trajectory, including diagnostic stability. Whereas individuals with cognitive impair-ment or GDD are expected to show delays across multiple developmental domains,

cognitive impair-ment or GDD are expected to show delays across multiple developmental domains, including ver-bal abilities, nonverbal reasoning, motor function-ing, adaptive behavior, and/or social skills, those with ASD should, by diagnostic definition, exhibit well-defined deficits in communication and socialization, in addition to the presence of atypical restricted, repetitive behaviors (Osterling et al. 2002; Vig and Jedrysek 1999). As detailed above, however, individuals with low MA often

et al. 2002; Vig and Jedrysek 1999). As detailed above, however, individuals with low MA often display symptoms of both ASD and GDD or ID. When compared to children with ASD, those with GDD exhibit greater social responsiveness and joint attention (Baranek 1999; Miller et al. 2019; Osterling et al. 2002; Vig and Jedrysek 1999). Recent research on social development suggests that toddlers with GDD, but without ASD, display mild to moderate impairments in more advanced social behaviors, such as

but without ASD, display mild to moderate impairments in more advanced social behaviors, such as pointing (i.e., a key joint attention behavior exhibited by age 1 year in many typical toddlers) and creative and imaginative play (i.e., complex make-believe play that builds on sensorimotor exploration and imitation in the second year of life). Thus, these behaviors are unlikely to be particularly helpful in differentiating ASD from global delays, particu-larly in youngsters with low MA (Miller et

in differentiating ASD from global delays, particu-larly in youngsters with low MA (Miller et al. 2019). There is some suggestion that delayed children, both those with ASD and GDD, engage in repetitive motor mannerisms in infancy and toddlerhood (Osterling et al. 2002), yet that find-ing is not universal (Miller et al. 2019). When compared to children with just cognitive delays, those with ASD demonstrate atypical language development, social withdrawal, and immature play, consistent with the

atypical language development, social withdrawal, and immature play, consistent with the defining features of ASD. Regardless of mental age, certain features appear to be indicative of ASD in early childhood, namely, a reduction in the following social behav-iors: eye contact, social smiling, facial expres-sions directed toward others, and responsiveness to one’s name (Baranek 1999; Miller et al. 2019; Osterling et al. 2002). It is useful to keep in mind that children with ASD usually show

al. 2019; Osterling et al. 2002). It is useful to keep in mind that children with ASD usually show deviations from typical development, particularly in terms of their social communication, yet those with global cognitive deficits are more likely to exhibit delays (Vig and Jedrysek 1999). As such, whereas chil-dren with GDD might “catch up” to their typically developing peers, those with ASD may continue on an atypical developmental trajectory, espe-cially if not provided with intensive

may continue on an atypical developmental trajectory, espe-cially if not provided with intensive ASD-specific intervention.

Autism-specific diagnostic instruments directly assess core symptoms of ASD, thereby helping to clarify diagnosis in cases of complex symptom overlap (e.g., ASD and GDD or ID). However, few “gold-standard” tools are designed for use in individuals with low MA, which serves to further complicate the diagnostic process for low-functioning or very young children. The Autism Diagnostic Interview – Revised (ADI-R), a structured interview for the diagnosis of ASD across the life span, is recommended

(ADI-R), a structured interview for the diagnosis of ASD across the life span, is recommended for use in individuals with a mental age above 2 years. Below the age of 3 years, diagnostic utility is mixed, and the measure reportedly overdiagnoses ASD in cognitively delayed and pre-verbal indi-viduals, regardless of chronological age (Gray et al. 2008; Risi et al. 2006; Ventola et al. 2006). The Autism Diagnostic Observation Schedule (ADOS), which is currently in its second edition, uses play as

Diagnostic Observation Schedule (ADOS), which is currently in its second edition, uses play as a means of eliciting social communi-cation behaviors in individuals of all ages, yet it is designed for use in those with a mental age of at least 12 months. Research on application of the ADOS to globally delayed populations is mixed. While in some studies the tool adequately dis-criminates ASD from other diagnoses, even in significantly delayed toddlers (Ventola et al. 2006), in other studies the

other diagnoses, even in significantly delayed toddlers (Ventola et al. 2006), in other studies the ADOS is much less accurate in young and cognitively impaired indi-viduals, particularly children functioning below a 15-month level (Gotham et al. 2007; Risi et al. 2006). In toddlers with low MA specifically, the ADOS uniformly overidentifies a large minority of those with GDD as having ASD (Miller et al. 2019). This overclassification appears to be a product of the relatively complex task demands

et al. 2019). This overclassification appears to be a product of the relatively complex task demands of the ADOS, which are too challenging for low-functioning children (Gotham et al. 2007). The Childhood Autism Rating Scale (CARS), which is also in its second edition at present, offers another method of ASD diagnosis, namely, a clinician rating scale that takes into account information gleaned from a developmental his-tory, as well as clinical observations of behavior. Although this measure is

a developmental his-tory, as well as clinical observations of behavior. Although this measure is often aligned with clinical best estimate (Gotham et al. 2007; Risi et al. 2006; Ventola et al. 2006), in children with low MA, the CARS both over (i.e., over-diagnoses)- and under-classifies (i.e., misses) a small portion of significantly delayed youngsters (Miller et al. 2019). It is thus important for clinicians to exercise some caution in applying and interpreting commonly used ASD diagnostic

for clinicians to exercise some caution in applying and interpreting commonly used ASD diagnostic tools in low MA, as these measures may result in misdiagnosis when used blindly in this population. Limited research exists regarding the develop-mental trajectory of individuals with ASD and low MA. That said, they do appear to be a particularly severe subgroup of ASD. Even when identified early (i.e., age 2 years), such children show less developmental growth (i.e., slower progress) in the

(i.e., age 2 years), such children show less developmental growth (i.e., slower progress) in the preschool period when compared to their peers with ASD and higher MA (Hinnebusch et al. 2017). It is important to note that the social deficits observed in individ-uals with low MA are not merely a product of their cognitive delays. In fact, between the ages of 2 and 4 years, stability of ASD diagnoses in children with ASD and low MA is remarkably high; that is, they remain on the autism spectrum and

in children with ASD and low MA is remarkably high; that is, they remain on the autism spectrum and continue to display significant symptoms, even when provided with early and intensive behavioral intervention (Hinnebusch et al. 2017; Miller et al. 2019). The high stability of symptoms in this vulnerable population provides further sup-port for the legitimacy of diagnosing ASD in the presence of low MA.

## Future Directions  With growing attention to the diagnosis of ASD with low MA, there is increased need for adequate diagnostic tools, as well as adapted interventions to best meet the needs of this severe population. When used and interpreted with caution by highly trained clinicians, “gold-standard” ASD-specific instruments such as the ADI-R, ADOS, and CARS may be suitable for the diagnosis of ASD in the context of comorbid low MA. In particular, the new Toddler Module of the ADOS, which is

ASD in the context of comorbid low MA. In particular, the new Toddler Module of the ADOS, which is designed for children ages 12–30 months, may be better suited developmentally for young children with low MA. Perhaps the most promising measure for the diagnosis of ASD in young and low-functioning individuals is not yet published for clinical use: Autism Observation Scale for Infants (AOSI; Bryson et al. 2008). The AOSI is intended for 6- to 18-month-olds and thus should suit most of the low MA

et al. 2008). The AOSI is intended for 6- to 18-month-olds and thus should suit most of the low MA population, though it is more of a developmental screener. Further research is necessary to determine the best instru-ments for the diagnosis of ASD with low MA. Given the apparent severity and stability of the ASD and low MA phenotype, it is imperative that ASD interventions be tailored to support these individuals. Children who have ASD with low MA make limited developmental progress over time

these individuals. Children who have ASD with low MA make limited developmental progress over time and show greater cognitive, adaptive, and social deficits than their peers with intact cogni-tive functioning even with intensive intervention (Hinnebusch et al. 2017). This pattern suggests that individuals with low MA may struggle to participate in and respond to traditional ASD-specific intervention services (Gardner et al. 2018). While failure to diagnose ASD in low MA may contribute to even

services (Gardner et al. 2018). While failure to diagnose ASD in low MA may contribute to even poorer outcomes for this subgroup, current intervention approaches are not sufficient to meet the needs of this population. Thus, investigation of appropriate treatments is strongly indicated, drawing from Applied Behavior Analysis (ABA) and other ASD-specific interventions, in addition to knowledge from spe-cial education and neurorehabilitation. Although there are important and unique con-siderations

spe-cial education and neurorehabilitation. Although there are important and unique con-siderations related to the diagnosis of ASD with low MA, given what is known about this popula-tion thus far, clinicians should have greater confi-dence in diagnosing ASD regardless of the mental age of the patient at the time of evaluation.

## Description  Diagnostic measures are designed to capture behaviors in the areas of communication, recipro-cal social interactions, and restricted and repeti-tive behaviors that characterize an autism spectrum disorder. These measures attempt to quantify behaviors associated with an autism spectrum disorder by assigning them numerical scores. These quantitative behavior scores are then translated into summary scores that result in a classification that is typically either consistent with one

into summary scores that result in a classification that is typically either consistent with one of the autism spectrum disorders or not. Current diagnostic instruments include parent questionnaires and interviews as well as standard-ized observational measures. The time and train-ing required to administer and score these instruments varies from minimal for parent ques-tionnaires to more involved for observational measures and semistructured interviews.

## Historical Background  One of the first widely used scales for identifying children with autism was The Rimland Diagnos-tic Form for Behavior Disturbed Children (Form E-1; Rimland 1968). This measure was an impor-tant development in the field, as it focused on identifying carefully selected symptoms of autism. Another early diagnostic measure devel-oped at around the same time was the Behavior Rating Scale for Autistic and Atypical Children (BRIAAC; Ruttenberg et al. 1966). This measure is

Rating Scale for Autistic and Atypical Children (BRIAAC; Ruttenberg et al. 1966). This measure is historically significant because it was the first to be based on actual observations of behavior from clinician case notes rather than parent report. The Handicaps, Behaviors and Skills Schedule (HBS; Wing and Gould 1978) was also an early influential measure because it was the first widely used semistructured parent interview and it con-tributed to the understanding of the “triad of impairments” that

parent interview and it con-tributed to the understanding of the “triad of impairments” that has led to our current under-standing of autism. Not technically considered a diagnostic measure, the HBS was a framework for gathering information regarding symptoms and behavior that could be utilized in a clinical evalu-ation. This measure has been revised and is cur-rently known at the Diagnostic Interview for Social and Communication Disorders (DISCO; Wing et al. 2002 – see below).

Another scale of importance in the initial group of diagnostic measures was the Behavior Autism Rating Scale (BOS; Freeman et al. 1978). This measure was the first instrument that emphasized controlling the environment in which the child was observed, as well as standardizing the behav-iors that were observed (Lord and Corsello 2005). Most of these measures have been revised, with Rimland’s Form E-1 becoming Form E-2, the HBS now the DISCO, and the BOS leading to the development of the Real

E-1 becoming Form E-2, the HBS now the DISCO, and the BOS leading to the development of the Real Life Rating Scale (RLRS; Freeman et al. 1986). Diagnostic measures have evolved over time, both because diagnostic criteria have changed with each revision of the Diagnostic and Statisti-cal Manual, Fourth Edition (DSM-IV), and because empirical studies continue to provide information about how well each measure differ-entiates children with autism from those without autism based on current

well each measure differ-entiates children with autism from those without autism based on current definitions. The diagnos-tic measures have changed as we have learned more about the disorder, including the expansion of age range and developmental levels of children included within this diagnostic group. As the current gold standard in autism diag-nostic measures, the Autism Diagnostic Observa-tion Schedule (ADOS; Lord et al. 2000) illustrates the change from DSM III to DSM IV criteria to now

Schedule (ADOS; Lord et al. 2000) illustrates the change from DSM III to DSM IV criteria to now include Asperger’s syndrome and pervasive developmental disorder, not otherwise specified on the spectrum. This measure evolved from its original form developed in the 1980s to its current form which includes five modules for assessing toddlers through adults with module choice dependent on the individual’s age and language level. The Childhood Autism Rating Scale (CARS: Schloper et al. 2010) is

age and language level. The Childhood Autism Rating Scale (CARS: Schloper et al. 2010) is another example of this evolution, with the addition of a scale for high-functioning autism, as the original version missed many children with better language and cognitive skills.

## Current Knowledge  There are currently several measures available for diagnostic purposes, ranging from those that are very quick to administer and require minimal training to those that take more time and training. As with any other psychometric measure, diag-nostic measures are evaluated based on reliability and validity data. This section will cover the most widely used and available diagnostic protocols. For more detailed information on these measures, please see the respective

diagnostic protocols. For more detailed information on these measures, please see the respective individual entries included within this encyclopedia (Table 1).

| Measure | Format | Administration time | Age range | Diagnostic criteria used | Training | Suggested use |
|:---|:---|:---|:---|:---|:---|:---| | SRS | Parent/teacher/self-report questionnaire | 15 min | Preschool to adulthood | DSM-IV | None | Screening/response to treatment |
| SCQ | Parent/caregiver questionnaire | 15 min | Preschool to adulthood | DSM-IV | None | Screening |
| GARS-2 | Parent/caregiver questionnaire | 15 min | Preschool to adulthood | DSM-IV | None | Screening |

| CARS-2 | Clinician rating based on observation | 30 min | Preschool to adulthood | DSM-III-R | Minimal | Diagnostic |
| BSE-R | Rating based on observation, review of records, and interview | 5 min | 1½ to 12 years | N/A | Yes | Symptoms for research |
| ABC | Teacher questionnaire | Not specified | 3–13 years | DSM-IV | Minimal | Measure maladaptive behavior |
| PDDRS | Parent questionnaire | Not specified | Not specified | DSM-III-R | None | Screening |

| PDDRS | Parent questionnaire | Not specified | Not specified | DSM-III-R | None | Screening |
| GADS | Parent questionnaire | 10 min | 3–22 years | DSM-IV | Yes | Assess Asperger’s disorder behavior |
| ASAS | Parent or teacher questionnaire | 10 min | 3–19 years | Not specified | None | Screening |
| ADI-R | Semistructured interview | 1.5–3 h | Toddler to adulthood | DSM-IV | Yes | Research and clinical diagnosis |

| DISCO | Semistructured interview | 2–3 h | Any age | ICD-10 | Yes | Assess individual needs, treatment goals |
| ASDI | Semistructured interview | Not specified | Not specified | Gillberg’s criteria | None | Screening |
| AOSI | Semistructured observation | 20 min | 6–18 months | DSM-IV | Yes | Early identification |
| ADOS | Observation | 30–60 min | Toddler to adulthood | DSM-IV | Yes | Research and clinical diagnosis |

| PEP-III | Caregiver report and clinical observation | 45–90 min | 1–7 years | DSM-IV | Minimal | Assess development, create treatment goals |

### Parent Questionnaires  **The Autism Behavior Checklist (ABC):** This ques-tionnaire is one component of the Autism Screen-ing Instrument for Education Planning (ASIEP; Krug et al. 1980), now in its third revision. It builds on several other measures, including Rim-land’s Form E-2, the BOS, and the BRIAAC. It contains five items across five areas, and ranges are provided to distinguish a high probability of autism, a low probability of autism, or mixed probability. Standard scores are

high probability of autism, a low probability of autism, or mixed probability. Standard scores are available for chil-dren between the ages of 3 and 13 years. It was initially intended to be completed by teachers or other professionals working with a child. This measure requires no special training. It has also been used with parents on a retrospective basis for children with high-functioning autism. One con-cern regarding this measure, however, is its low sensitivity, as many children on the

One con-cern regarding this measure, however, is its low sensitivity, as many children on the spectrum appear to be missed using the suggested cutoff score.

**The Australian Scale for Asperger’s Syndrome (ASAS):** This questionnaire includes 19 items cov-ering five areas and is scored on a seven point Likert-type scale. It is designed to be completed by a teacher or parent and covers ages 3–19 years. The authors recommend that the measure be used as a screener rather than a diagnostic measure because of low specificity. There are little published data available on this measure, and the original study had several methodological issues, including

data available on this measure, and the original study had several methodological issues, including raters who were not blind to diagnosis. Though the measure does not result in a classifi-cation of Asperger’s disorder, as a screener, it provides information on whether a child should receive a diagnostic evaluation.

**Behavior Summarized Evaluation – Revised (BSE-R):** This rating form is comprised of items from two overlapping instruments, the Behavioral Summarized Evaluation Scale (BSE) and the Infant Behavioral Summarized Evaluation Scale (IBSE; Barthelemy et al. 1997). It is primarily designed to document behavioral symptoms asso-ciated with autism as they relate to neurophysio-logical measures. These scales consist of 20 items

Diagnostic Interviews Ann S. Le-Couteur and Thomas P. Berney Institute of Health and Society, Sir James Spence Institute, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne, UK  Definition The diagnostic interview (DI) is a central component of the process (diagnostic process) in which, for a variety of reasons ranging from research to the development of an intervention plan, a decision is made as to whether there is sufficient evidence in an individual’s symptoms and signs for

is made as to whether there is sufficient evidence in an individual’s symptoms and signs for a diagnosis of one or more of the “disorder(s)” defined by the criteria of the internationally agreed diagnostic classification systems (▶DSM-5).

Historical Background Following the initial descriptions of autism and Asperger syndrome in the 1940s, agreed criteria emerged slowly and a number of checklists were developed which matched a list of symptomatology against the criteria evolving at the time in ICD 9 (1975) and DSM-II (1980) (DSM-III) focusing on accounts of observable behavior, particularly in childhood, notably the E-2 (Rimland diagnostic form for behavior disturbed children (E-2)) and the Autism Behavior Checklist (ABC). In

diagnostic form for behavior disturbed children (E-2)) and the Autism Behavior Checklist (ABC). In the 1960s, in both America and the UK, the search for greater consistency and precision in psychiatric diagnosis led to the development of standardized diagnostic interviews; initially schedules of standard questions, these became elaborated into a more clinical interview that encouraged the interviewer to cross-examine the patient until the nature of the symptom was clear (Wing et al. 1967). A

to cross-examine the patient until the nature of the symptom was clear (Wing et al. 1967). A decade later, the same model led to the development of more systematic interviews in making the diagnosis of autism (as the prototypical disorder of the pervasive developmental disorders). Wing and Gould produced the Handicaps, Behavior, and Skills Schedule (HBSS) which they later refined into the Diagnostic Interview for Social and Communication Disorder (DISCO), Schopler and Reichler developed the

Interview for Social and Communication Disorder (DISCO), Schopler and Reichler developed the Childhood Autism Rating Scale (CARS), and Le Couteur, Rutter, and Lord produced the Autism Diagnostic Interview (later revised to become the ADI-R) (Autism Diagnostic Interview-Revised). These standardized diagnostic instruments consist of a semi-structured interview (based on the agreed symptom criteria) with an adult informant and became recognized as the “gold standard” in terms of their

criteria) with an adult informant and became recognized as the “gold standard” in terms of their comprehensiveness and reliability in obtaining a clinical history.

The identification of a broader spectrum of autism disorders (ASD), going beyond the original narrow definition for autism, led to an extension of the content and form of ▶diagnostic instruments in autistic spectrum disorders. Examples of these are the Asperger Syndrome Diagnostic Interview (ASDI) and the Autism Questionnaire (AQ) (Baron-Cohen et al. 2001) for Asperger syndrome, the Pervasive Developmental Disorder in Mental Retardation Scale (PDD-MRS) for people with intellectual disability

Disorder in Mental Retardation Scale (PDD-MRS) for people with intellectual disability (Kraijer and de Bildt 2005), and the Diagnostic Interview Guide for use in general adult psychiatry (Royal College of Psychiatrists 2011). The recognition of autistic traits (broader autism phenotype – broader spectrum prevalence) in the relatives of people with ASD has led to the development of a variety of interviews to identify these behavioral and personality characteristics. In many of these, the

of interviews to identify these behavioral and personality characteristics. In many of these, the emphasis was on obtaining material from informants (usually parents) about behavior. At the end of the 1990s, the Autism Diagnostic Observation Schedule (ADOS) was developed as a play and activities based assessment with the individual; this assessment is described as a series of tightly defined, detailed observations which systematically elicits autistic symptomatology. In the last decade, the

detailed observations which systematically elicits autistic symptomatology. In the last decade, the number of instruments, their use varying from screening to diagnosis, has reflected the mounting interest in ASD, while increased public awareness and the Internet have fostered the growth of self-rating scales and the demand for confirmatory diagnostic interviews.

Current Knowledge The Content of the Interview There are a variety of models for conducting a diagnostic interview. The structure or framework for the DI is important, but there is no compelling evidence to recommend any particular interview format for any specific situation. For all DIs (irrespective of the interview format), the underlying context is the social engagement and interaction between the interviewer and the interviewee. The interviewing skills and attitudes of the interviewer

the interviewer and the interviewee. The interviewing skills and attitudes of the interviewer (clinician or researcher) affect the quality of the interaction which in turn influences the success of the information-gathering process. The responses of the interviewee (also affected by many factors including whether they already know the interviewer; the interviewee is in fact the subject of the interview; his or her intellectual and communicative ability, motivation, emotional state, and so on)

his or her intellectual and communicative ability, motivation, emotional state, and so on) and the setting can also influence the outcome and “success” of the diagnostic interview (DI).

It should include: 1.  An account of the individual’s current concerns – the symptoms that have brought to interview at this particular time and their development.

2.  A systematic survey of the symptomatology associated with ASD, especially that which is directly related to the diagnostic criteria. This review should also include consideration of other behavioral features known to be commonly associated with ASD such as motor coordination, sensory and perceptual symptoms, and feeding and bowel problems. It should include any other behavioral problems recognizing that these can occur in response to a variety of potentially modifiable influences from

recognizing that these can occur in response to a variety of potentially modifiable influences from toothache to a change in school timetable or work colleagues.

3.  The wider setting – the individual’s everyday life and activities, relationships, and accomplishments.
4.  The structure of their family and any history of developmental or psychiatric disorder.
5.  An account of the individual’s development and their acquisition of skills, not just in infancy and early childhood but subsequently, through school and after, to give a detailed “developmental history”.

6.  An account of any other anomaly, past or present, including developmental, psychiatric, or medical disorder as well as of any other adversity including deprivation or substance abuse.

The DI will usually be complimented by a direct examination of the individual together with the collation of background reports (including direct observation in other settings). All these sources of information will contribute to the accuracy and value of the final, “best estimate,” diagnostic conclusions which, in turn, will inform the multiagency needs- and skills-based management plan.

While the DI and examination are conceptually distinct, in practice, there is likely to be a substantial overlap. For example, when an individual is being interviewed and asked to provide their own account, the clinician will be considering the way the account is being given, the quality and content of the social interaction, and other individual characteristics (such as their appearance, behavior, and communication). These factors will inevitably affect the interaction between the clinician

and communication). These factors will inevitably affect the interaction between the clinician and the interviewee, thus shaping the course of the DI.

How the DI progresses is at least in part dependent on the skills of the interviewer, their training and expertise, as well as the setting of the interview and the expectations of the interviewees. All these different aspects can foster a “dialogue” between clinician and individual. Instruments may be combined for history-taking and observation although, in the end, the distinction between them is one of emphasis rather than clear-cut. For example, while the framework of observational ratings

is one of emphasis rather than clear-cut. For example, while the framework of observational ratings is central to the ADOS, it is also a semi-structured interview.

The Format of the Diagnostic Interview The interview may take a range of formats depending on its purpose:  1.  Unstructured. The structure is not immediately apparent, but the interviewer’s impression determines the content, purpose, and conclusions of the interview. Its primary purpose may be a different one with diagnosis as a secondary consideration. Such an assessment depends greatly on the individual clinician’s experience, and for this reason it is likely to be difficult to understand

individual clinician’s experience, and for this reason it is likely to be difficult to understand or replicate.

2.  Semi-structured/interviewer based. The interview, usually based on a predetermined diagnostic framework, has well-defined symptoms to be explored. Usually conducted in a conversational style, it takes the form of required questions supplemented by additional, optional, open-ended prompts as necessary until there is sufficient information for the trained interviewer to make the coding judgment for each item and section of the interview. The precision and clarity with which symptoms and

for each item and section of the interview. The precision and clarity with which symptoms and their codings are defined contribute to the quality of the instrument.

3.  Structured/respondent based. The trained interviewer closely follows a defined format without deviation; the interview may be restricted further by giving the interviewee a limited number of choices. The interviewer is not called upon to make any clinical judgment (and, indeed, may not know very much about ASD and other diagnoses to complete the interview). The result is a relatively high inter-rater reliability and an interview that lends itself to being turned into a self-completion

inter-rater reliability and an interview that lends itself to being turned into a self-completion questionnaire. This can be administered as a pre-interview contribution or completed in a computerized format (e.g., the E-2 or Autism Spectrum Quotient (AQ) questionnaires). Increasingly for some individuals, access to this type of questionnaire has been a staging post in their journey to diagnosis.

4.  A composite. The interview incorporates the material from a preinterview questionnaire. Not only is this a more effective use of time, substantially shortening the DI, but many individuals are more comfortable (and therefore more open) with the impersonality of a self-completion questionnaire. Examples of DIs that use information-collected preinterview include the Developmental, Dimensional, and Diagnostic Interview (3Di) (Skuse et al. 2004) and the Adult Asperger Assessment (AAA)

and Diagnostic Interview (3Di) (Skuse et al. 2004) and the Adult Asperger Assessment (AAA) (Baron-Cohen et al. 2005).

It is difficult to define the point at which the self-completion or screening checklist becomes a more formal diagnostic instrument as this will depend on the skill, experience, and intent of those employing it.

The more standardized the format for gathering and organizing the information, the greater the consistency in the data collected and the diagnoses arrived at by clinicians and researchers of varied experience and views and from different centers. However, validity is lost with increasing rigidity that limits the clinician’s skills. Using agreed diagnostic systems permits prospective research as well as making clinical material available for retrospective review for service and academic

as well as making clinical material available for retrospective review for service and academic analysis. The whole process is more transparent and can be taught to trainees.

The style of interview has to be appropriate to the task in hand: a structured interview, with its very narrow, specific remit, will be used for screening or surveys and as such can be administered by a technician. The semi-structured interview provides the framework for a more in-depth assessment when a definitive research or clinical diagnosis is required and usually includes one or more summary algorithms to identify ASD using prespecified thresholds. However, the protean presentations of

algorithms to identify ASD using prespecified thresholds. However, the protean presentations of ASD and the demands of clinical work mean that, in the end, even the best of these instruments does not remove the need for knowledge and experience of ASD in coming to a clinical diagnosis which will inform the diagnostic formulation and intervention planning. There are cases, notably in adulthood, of individuals with less clear-cut presentations where it is difficult to discern the pattern of

of individuals with less clear-cut presentations where it is difficult to discern the pattern of symptoms. It is here that the experience of working with a wide variety of people across the variations of age, ability, gender, ethnicity, and comorbidity makes it possible to appreciate the characteristic impairments of ASD. In addition, within the assessment team, there needs to be sufficient knowledge and experience to recognize the developmental and psychiatric disorders that are associated

and experience to recognize the developmental and psychiatric disorders that are associated with ASD (notably attention deficit hyperactivity disorder (ADHD) (▶Attention Deficit/Hyperactivity Disorder) and developmental coordination disorder (▶Developmental Coordination Disorder)).

The choice to use a particular diagnostic instrument will be informed by both the purpose of the interview and the features of the instrument. For example, the ADI-R (▶Autism Diagnostic Interview-Revised) provides a summary lifetime diagnosis, using information about early childhood and the current state for key aspects of behavior and development and a record of the particular unusual behaviors (such as restricted, repetitive mannerisms and stereotyped behaviors) relevant to the decision as

(such as restricted, repetitive mannerisms and stereotyped behaviors) relevant to the decision as to whether probably all references to Pervasive developmental disorder should now be replaced with autism spectrum disorder is present or not. The frequency and intensity of each symptom is carefully graded to give a detailed quantified picture of key components. The DISCO (▶Diagnostic Interview for Social and Communication Disorders) takes a rather broader approach to arrive at a systematic

for Social and Communication Disorders) takes a rather broader approach to arrive at a systematic description that allows the identification of other developmental disorders. The 3Di is a computer-based interview designed to focus on current functioning to assess autistic traits, social impairments, and comorbidities in children of normal ability. The content of the interview generates a structured report with summary algorithms of symptom profiles for autism and common non-autistic

a structured report with summary algorithms of symptom profiles for autism and common non-autistic comorbidities. By contrast, the CARS (▶Childhood Autism Rating Scale) draws on observation as well as interview. The format is much less structured, guiding the interviewer through the relevant domains rather than individual symptoms, requiring the researcher/clinician to reach the coding decisions through the integration of information from subject and informants.

Most structured instruments (▶Diagnostic Instruments in Autistic Spectrum Disorders) have been designed for a specific group, often defined by age (e.g., childhood) or ability. This means that the phrasing or materials might not be suitable for a different “client” group when adaptation of materials and further reliability and validity studies would be required.

As adults come forward for diagnosis, including, for example, those with a severe intellectual disability, women of normal ability, and individuals with preexisting psychiatric and personality disorder diagnoses, the challenge will be how best to tailor the format and content of the DI appropriately. A particular issue is the necessity of a developmental history to confirm that the evidence of delayed or deviant development dates back to early childhood. This becomes particularly important in

or deviant development dates back to early childhood. This becomes particularly important in adulthood should there be a need to differentiate ASD from other disorders (such as schizophrenia (▶Schizophrenia) or dissocial or obsessive-compulsive personality disorders (▶Obsessive-Compulsive Disorder (OCD)). However, it is this client group who may experience real difficulty finding an informant with accurate knowledge about their early development.

Whatever the format of the DI, training in its use is required. This applies especially to standardized instruments where the more structured the interview, the more straightforward the training. While it may be obtained by attending a specific training course, receiving in-house individual tuition, or using a self-taught program, it should include a check that clinician/researcher has reached an acceptable standard of accuracy and reliability. This should be followed by regular opportunities

acceptable standard of accuracy and reliability. This should be followed by regular opportunities to maintain consistency and reliability over time. Undertaking the rating of standardized videos or attending joint sessions with colleagues can help to maintain best practice in administration of the procedure as well as reliability between colleagues and different centers. However, because this is time consuming and may be seen as additional pressure on scarce resources, it is all too easily

is time consuming and may be seen as additional pressure on scarce resources, it is all too easily overlooked.

Implementing the Interview A DI may take place as a single event in one setting or be spread across several sessions and settings. The venue (clinic, specialist center, home, school, or other setting) will depend on the needs of individual, their family/carers, clinicians, and services. For example, a very anxious individual or a disabled relative may only be accessible in the home; a clinic may be the only place to get the opinion of a busy clinician or be the best place to provide the

may be the only place to get the opinion of a busy clinician or be the best place to provide the structured, calm setting needed to see someone at their best. It may be necessary to go to a school, nursery, or workplace to see the context and thereby understand what is happening there. Observation in different settings may allow some distinction to be made between what behavior is pervasive and what is situational and in response to a particular environment or set of circumstances.

The DI must provide sufficient information for the interviewer to decide whether the symptoms and signs are:

1.  Sufficiently pronounced in their intensity or frequency to cross the threshold that separates so-called normal variation for developmental progress and personal characteristics from disorder: threshold that may well vary according to the problems experienced by the individual, the context and situation, and the “demands” and expectations placed upon them. For example, a young child who has managed well in their home with a supportive family may find it much more difficult to settle into an

well in their home with a supportive family may find it much more difficult to settle into an educational setting such as preschool if they do not have sufficiently flexible communication, social and play skills to join in with other young children or cope with new and unexpected changes in routine in an otherwise familiar environment. Similarly, an adult who may have learnt to manage effectively in a particular workplace may still find that he/she is less able to succeed in social and more

in a particular workplace may still find that he/she is less able to succeed in social and more personal relationships. For the diagnostic interview to be successful, the interviewer needs to understand the importance of gathering information about the development of the individual’s behavior in different settings and contexts over time. This may well require (especially for children and young people but often also for adults) information from other informants who know the subject well in

people but often also for adults) information from other informants who know the subject well in different settings.

2.  Sufficiently close to the currently agreed criteria (▶DSM-5) for a diagnosis of ASD or might be explained better by some other disorder. ASD is a neurodevelopmental disorder defined by its onset in early childhood, something that may be difficult to confirm in later adulthood.

The interview therefore has to enable the clinician to distinguish the signals of ASD against the background noise of other, complicating disorders, particularly other developmental and psychiatric disorders such as intellectual disability, specific speech and language disorders, attention deficit hyperactivity disorder (ADHD), epilepsy, and/or mental health problems such as anxiety or obsessive-compulsive disorder.

The interview must also be appropriate to its immediate purpose: for example, the requirements for inclusion in a research study might be more stringent than those needed as the basis for clinical or administrative planning.

A diagnosis may be sought for many reasons, ranging from inclusion in a research study, accessing specific treatments and interventions, eligibility for particular education provision, achieving financial benefits, and gaining family understanding, through to assisting a court to understand the needs of the individual. Most importantly, it can give the individual a more complete understanding of their profile of strengths and impairments. The diagnostic interview also provides a benchmark

of their profile of strengths and impairments. The diagnostic interview also provides a benchmark against which subsequent progress can be measured. It has to be tuned accordingly to meet these specific requirements.

The results of the interview should be valid (i.e., that others would agree with the diagnostic conclusions) and reliable (they would be the same if repeated, whether by the same clinician or others). The process needs to be acceptable to all, sufficiently transparent to be understood, and sufficiently valued for the results to be useful.

Most instruments require the interviewer to make judgments and ascribe a numerical score to each item in the assessment. These scores may be collated to give symptom and/or domain scores which can be summarized within one or more instrument-specific diagnostic algorithms. For a number of instruments, usually those that have been developed for research, the reliability and validity of the algorithm scores and instrument-specific diagnostic thresholds have been tested and refined in different

scores and instrument-specific diagnostic thresholds have been tested and refined in different populations. However, it is important to recognize that a diagnostic algorithm score derived from a particular instrument may contribute to, but is not equivalent to, a clinical diagnosis. This is something broader, using an internationally agreed diagnostic classification system, based on information gathered from several sources, and often involving professionals working in different agencies to

gathered from several sources, and often involving professionals working in different agencies to provide a multidisciplinary assessment. This information, in turn, will contribute to, but is not sufficient for, the development of a management plan. The DI, which may include the use of a structured instrument, is an opportunity for the development of a dialogue between the interviewer, the individual, and the family/carer and, as such, can also provide the context for sharing the outcome of the

and the family/carer and, as such, can also provide the context for sharing the outcome of the multi-agency assessment.

One of the great values of using an agreed diagnostic classification system is that it facilitates the possibility of successful research collaborations between clinical academic centers as well as making clinical material available for service review and analysis. With greater transparency between services and centers, there is an increase in research capacity, the ability to share new knowledge and significant developments, and in opportunities for trainees to learn from the experiences of

and significant developments, and in opportunities for trainees to learn from the experiences of their colleagues.

Future Directions A number of standardized instruments are now in routine use for the DI providing both a valuable framework for the history as well as the basis for the start of a therapeutic relationship with individuals and families. Many are time consuming and resource intense, and this has to be balanced against the benefits of the therapeutic alliance and detailed descriptions of behavior. While the use of a detailed DI may well be appropriate for a behavioral syndrome that has such a

While the use of a detailed DI may well be appropriate for a behavioral syndrome that has such a variety of presentations and underlying disorders, there is great pressure to develop briefer processes and ever greater consistency while maintaining validity.

The value of increasingly sophisticated online questionnaires as an adjunct to the DI needs to be investigated. New measures will also be required as further understanding of the complexity of the autism spectrum across the lifespan becomes available. However, the development of new instruments is a complex and expensive task. An equally important challenge is to investigate the best ways of getting reliable information from different sources to complement the DI this will enable the

of getting reliable information from different sources to complement the DI this will enable the clinician/researcher, referred individual, and family to achieve a valid diagnostic formulation that in turn leads to an accurate needs- and skills-based management plan. The recognition of autistic traits in the families of people with autism has led to the development of instruments to identify these which, once sufficiently validated and standardized, will be published. In spite of many claims

which, once sufficiently validated and standardized, will be published. In spite of many claims and much research, there is still no reliable laboratory test for ASD. However, even if such a test were ever developed, its results would complement the diagnostic interview rather than replace it, a model seen in other medical conditions as, for example, the use of genetic testing in the clinical diagnosis of Down or Rett syndrome. With increasing awareness and understanding of ASD, there is likely

of Down or Rett syndrome. With increasing awareness and understanding of ASD, there is likely to be greater emphasis on the identification of the strengths, skills, needs, and impairments of the individual and their family, as well as on diagnosis, to inform a dimensional diagnosis and profile across different domains of functioning. Although separate assessments may be needed to measure different aspects of an individual’s functioning (e.g., social responsiveness, language and flexibility,

aspects of an individual’s functioning (e.g., social responsiveness, language and flexibility, anomalies in sensory sensitivity and motor coordination), this information will always need to be collated alongside the findings of a DI to achieve a diagnostic formulation. At least for the foreseeable future, classification systems used in clinical and research practice, together with other social and resource pressures, will continue to require a categorical diagnosis of ASD.

See Also ▶Anecdotal Observation ▶Asperger Syndrome Diagnostic Interview ▶Autism Behavior Checklist ▶Autism Diagnostic Interview-Revised ▶Autism Diagnostic Observation Schedule ▶Broader Autism Phenotype ▶Childhood Autism Rating Scale ▶Developmental Coordination Disorder ▶Diagnostic Interview for Social and Communication Disorders ▶Diagnostic Instruments in Autistic Spectrum Disorders ▶Diagnostic Process ▶Dimensional Versus Categorical Classification ▶DISCO ▶DSM-III ▶DSM-5 ▶Dyspraxia ▶Evaluation

▶Dimensional Versus Categorical Classification ▶DISCO ▶DSM-III ▶DSM-5 ▶Dyspraxia ▶Evaluation of Sensory Processing ▶Informal Assessment ▶Obsessive-Compulsive Disorder (OCD) ▶Psychotic Disorder ▶Schizophrenia ▶Sensory Impairment in Autism ▶Theory of Mind     Definition Diagnostic overshadowing refers to the negative bias impacting a clinician’s judgment regarding co-occurring disorders in individuals who have intellectual disabilities or other mental illness. Symptoms or behaviors that may be

who have intellectual disabilities or other mental illness. Symptoms or behaviors that may be due to a specific mental illness are attributed to another disorder, historically Mental Retardation, without considering alternative etiology.

Historical Background Reiss, Levtan, and Szyszko first coined the term “diagnostic overshadowing” to describe the tendency to assess individuals with intellectual disability less accurately (Reiss et al. 1982a, b; Reiss and Szyszko 1983). Subsequent research has consistently demonstrated that the cognitive deficits displayed by an individual negatively impacted the ability of clinicians to make accurate judgments with regard to other co-occurring disorders (c.f., Jopp and Keys 2001; White et

accurate judgments with regard to other co-occurring disorders (c.f., Jopp and Keys 2001; White et al. 1995). Jopp and Keys provide a review of the concept of diagnostic overshadowing in addition to possible moderators (Jopp and Keys 2001). Their review indicated that most clinician-based variables, such as nature of clinical position (e.g., school, clinical and counseling psychologists, social workers), educational level (e.g., graduate student vs. Ph.D.), and years of experience, were not

workers), educational level (e.g., graduate student vs. Ph.D.), and years of experience, were not associated with the strength of the bias. Moreover, though the presence of multiple disabilities would presumably be more inherently difficult to disentangle for a diagnosing clinician, the research clearly indicated that the clinician’s perception of the cognitive deficits present in the individual being assessed was the most salient feature reducing diagnostic accuracy. Diagnostic overshadowing

being assessed was the most salient feature reducing diagnostic accuracy. Diagnostic overshadowing causes clinicians to overlook a range of comorbid mental illness in individuals with intellectual disability, including phobias, schizophrenia, avoidant personality disorder, and depression (Jopp and Keys 2001). As Jopp and Keys note, the bias potentially serves to reduce both sensitivity and specificity – two important components of accurate diagnosis. Sensitivity refers to the ability to

specificity – two important components of accurate diagnosis. Sensitivity refers to the ability to accurately diagnose individuals who have a disorder, while specificity refers to the ability to accurately rule out individuals who do not have a particular disorder. Diagnostic overshadowing may reduce sensitivity by creating more false negatives, such as when a child with a cognitive deficit is not diagnosed with an anxiety disorder that they truly have. It may also reduce specificity by

is not diagnosed with an anxiety disorder that they truly have. It may also reduce specificity by increasing the number of false positives, such as when a child is diagnosed with an intellectual disability, when they really have another disorder that has caused the cognitive deficit. Only one factor has been found to moderate the impact of diagnostic overshadowing, which is how clinicians process information, termed cognitive complexity (Jopp and Keys 2001). That is, when a clinician is able to

information, termed cognitive complexity (Jopp and Keys 2001). That is, when a clinician is able to view a patient’s behaviors in a multidimensional fashion, incorporating a wide range of thoughts, feelings, and behaviors, which in turn leads to generating multiple hypotheses, the impact of the patient’s cognitive deficits and the resulting diagnostic overshadowing can be reduced. The concept of diagnostic overshadowing has direct epidemiological implications. If diagnostic accuracy is impacted

overshadowing has direct epidemiological implications. If diagnostic accuracy is impacted and individuals are missed with regard to a diagnosis, or misdiagnosed, then prevalence data may be misleading or incorrect. Moreover, epidemiological studies not only inform prevalence and incidence of a disorder and its associated characteristics, but can also help guide etiological understanding. For example, this was especially the case in autism wherein the initial report of the prevalence of

For example, this was especially the case in autism wherein the initial report of the prevalence of co-occurring epilepsy in autism led to scientists to examine biological mechanisms in contrast to the non-biological theories promulgated at the time (Bryson and Smith 1998; Lotter 1974). If diagnostic overshadowing causes clinicians to overlook important co-occurring disorders, advancements in etiological understanding may also be impacted.

Current Knowledge More recently, clinicians and researchers have extended the notion of diagnostic overshadowing beyond individuals with cognitive deficits to those with other disorders such as autism. In addition, diagnostic overshadowing has been extended beyond the diagnostic process to discussions regarding how it may impact treatment. For example, some researchers have found that diagnostic overshadowing has direct treatment implications. How an individual is diagnosed affects what

overshadowing has direct treatment implications. How an individual is diagnosed affects what treatments are recommended by their treating providers. If the treating provider is affected by diagnostic overshadowing and thus does not recognize other disorders, those other difficulties will not be appropriately treated. Minnes and Steiner found that parents of children with Down syndrome, for example, reported more problems receiving treatment for the co-occurring illnesses, such as cataracts,

reported more problems receiving treatment for the co-occurring illnesses, such as cataracts, thyroid problems, and possible dementia (Minnes and Steiner 2009). Researchers have proposed that the same mechanism biasing clinicians who work with individuals with cognitive deficits may also apply to clinicians who work with individuals with autism. More specifically, given the wide range of cognitive abilities in addition to the other symptoms of autism, such as communication problems and other

abilities in addition to the other symptoms of autism, such as communication problems and other challenging behaviors, clinicians may be underdiagnosing comorbid disorders in individuals with autism, despite the accumulation of evidence that demonstrates a high prevalence of co-occurring disorders in autism such as mood disorders, attentional disorders, and behavioral disorders (Simonoff et al. 2008). Others have demonstrated how diagnostic overshadowing has impacted epidemiological research

2008). Others have demonstrated how diagnostic overshadowing has impacted epidemiological research results. For example, Charman and colleagues, using the Special Needs and Autism Project sample (i.e., total population cohort of 56, 946 children in the UK ages 9–10), compared the concordance of their research-based diagnosis to the diagnoses derived from local services in children with IQs above and below 70. They found that the amount of children diagnosed with an autism spectrum disorder from

below 70. They found that the amount of children diagnosed with an autism spectrum disorder from local services who had cognitive impairment was less than those in that group that had been diagnosed through their epidemiological research design, 25% compared to 45% (Charman et al. 2009). These results demonstrate the potential diagnostic overshadowing bias and its impact on prevalence rates of autism depending on method of ascertainment.

Future Directions In their 2001 review, Jopp and Keys noted four areas in need of research with regard to diagnostic overshadowing which remain relevant despite the broadening of diagnostic overshadowing beyond intellectual disability: (1) improve specification of clinical decisions that make up diagnostic overshadowing, (2) note the processes whereby diagnostic overshadowing occurs, (3) increase the appreciation of other variables such as the environment as they impact overshadowing, and (4)

the appreciation of other variables such as the environment as they impact overshadowing, and (4) explore overshadowing more fully using qualitative and other methodologies (Jopp and Keys 2001). How much overshadowing actually takes place in local and “real world” clinics, as opposed to the vignettes used in the research that explore its presence, needs to be more fully explored, as well as a better delineation of how diagnostic overshadowing is impacting other diagnoses, such as autism, in

better delineation of how diagnostic overshadowing is impacting other diagnoses, such as autism, in addition to cognitive deficits alone.

Definition Autism spectrum disorders (ASDs) are a group of heterogeneous disorders that share overlapping diagnostic criteria. These include deficits in communication and socialization, and restricted interests and repetitive behaviors. Deficits in socialization are the hallmark of all ASDs, and deficits in this area are diagnostically required to meet criteria for all of the ASDs. Important to note is that even with these three core domains of impairment, heterogeneity across these symptoms

note is that even with these three core domains of impairment, heterogeneity across these symptoms exists on an individual basis. As such, the classification systems used to categorize the core impairments in ASD have been amended over time. Even still, the diagnostic process of ASD is complicated by numerous factors including the differential diagnosis within ASDs, a push to identify symptoms of ASD at very young ages, and the stability of ASD diagnoses over time. Thus, this entry will review

ASD at very young ages, and the stability of ASD diagnoses over time. Thus, this entry will review these factors in regard to the diagnostic process of ASD.

Historical Background Autism spectrum disorders were first introduced into the diagnostic nomenclature in 1980 (i.e., Diagnostic and Statistical Manual of Mental Disorders, Third Edition [DSM-III]; American Psychiatric Association [APA] 1980) under the category of pervasive developmental disorders. However, two of the currently recognized diagnoses, pervasive developmental disorder not otherwise specified and Asperger’s disorder, were not introduced as diagnostic disorders until 1987 and 1994,

specified and Asperger’s disorder, were not introduced as diagnostic disorders until 1987 and 1994, respectively. Although the diagnostic categories have changed throughout the different editions of the DSM, the main areas of impairment (i.e., symptom domains) have remained largely consistent. For example, deficits in interpersonal relationships, impairment in communication, and bizarre responses to the environment were the three main symptom domains in the DSM-III. Currently, the three main

to the environment were the three main symptom domains in the DSM-III. Currently, the three main symptom domains include impairment in social interaction, impairment in communication, and restricted interests and repetitive behaviors (APA 2000).

Current Knowledge ASD is an umbrella term used to encompass five disorders: autistic disorder (AD), Asperger’s disorder (AS), pervasive developmental disorder not otherwise specified (PDD-NOS), Rett’s disorder, and childhood disintegrative disorder. Given the very low incidence of these latter two conditions, the focus of this overview is related to AD, AS, and PDD-NOS. A child is referred for an assessment of ASD if developmental milestones are not met or after observations of behaviors

for an assessment of ASD if developmental milestones are not met or after observations of behaviors related to diagnoses on the autism spectrum. Initial observations of symptoms or concerns regarding developmental milestones are most often made by teachers, day-care providers, pediatricians, and parents. As with other psychiatric disorders, best practices in regard to the assessment of ASD is to incorporate multiple informants and multiple methods. Informants come in the form of teachers,

to incorporate multiple informants and multiple methods. Informants come in the form of teachers, day-care providers, parents, grandparents, guardians, and other therapists familiar with the child (e.g., physical therapist, speech therapist). The assessment for a diagnosis of ASD should include an interview, an observation, and the administration of at least one assessment measure that has been psychometrically investigated to screen/diagnose ASD. It is also common practice to utilize measures

investigated to screen/diagnose ASD. It is also common practice to utilize measures of cognitive functioning and adaptive function to assess for a comorbid diagnosis of intellectual disability. During the entirety of the assessment sessions, clinicians assess for the triad of impairments indicative of an ASD diagnosis: deficits in communication, impairments in socialization, and the presence of repetitive motor movements (e.g., hand flapping) or intense and restricted interests (e.g., will only

motor movements (e.g., hand flapping) or intense and restricted interests (e.g., will only play with cars). Clinicians should also be mindful of the high rates of comorbid psychopathology and challenging behaviors, and should use ASD measures that also address these issues.

More recently, there has been a move to diagnose ASD at very young ages. Fortunately, assessments designed to screen for symptoms of ASD in young populations have been developed. The measures with the best research to support them for this purpose are the Modified Checklist for Autism in Toddlers (M-CHAT; Robins et al. 2001) and the Baby and Infant Screen for Children with aUtIstic Traits-Part1 (BISCUIT-Part1; Matson et al. 2007). Both measures are rating scales that can be administered in 30

(BISCUIT-Part1; Matson et al. 2007). Both measures are rating scales that can be administered in 30 min or less, have determined cutoff scores, and present with sound psychometric properties. Given the push to identify symptomatology indicative of ASD at younger ages, researchers have explored the diagnostic stability of symptoms using samples of toddlers. Outcomes of such investigations have provided support for the diagnostic stability for ASD for children under age three (Worley et al.

provided support for the diagnostic stability for ASD for children under age three (Worley et al. 2011). If diagnostic status changes, it is often from one ASD to another (e.g., PDD-NOS to AD; Cox et al. 1999; Eaves and Ho 2004; Kleinman et al. 2008). Thus, at this time, research supports the need and the ability to reliably diagnose ASD during the toddler years. Diagnosing ASD at very young ages is important, as early intervention is key for long-term success.

Another factor to consider when choosing an assessment tool is the ability of the measure to differentiate between the various ASDs, given the blurred boundaries of the various disorders comprising the spectrum. The reader will note that with the appearance of the DSM-V, all ASDs will be collapsed together into one diagnostic category. However, for the purpose of service planning, evaluating the severity and symptom profiles will remain very important. Although ASD can be reliably

the severity and symptom profiles will remain very important. Although ASD can be reliably differentiated from other developmental disorders, differential diagnosis between AD, AS, and PDD-NOS remains difficult. This phenomenon is largely due to the overlapping diagnostic criteria used to define these disorders in the diagnostic nomenclature. More specifically, the diagnostic criteria for PDD-NOS are ill defined with no specific number of criteria established to obtain this diagnosis. In

are ill defined with no specific number of criteria established to obtain this diagnosis. In addition, the diagnostic symptoms for AD and AS overlap exactly in the area of socialization and repetitive behavior and restricted interests. As a result, many researchers have examined differences between disorders comprising the spectrum. However, findings are largely inconsistent. Nonetheless, it is still important to assess for the different ASDs as a means of conforming with the current diagnostic

important to assess for the different ASDs as a means of conforming with the current diagnostic classification system. Two measures that assist in the differential diagnosis between the various ASDs are Autism Spectrum Disorders Diagnostic for Child (ASD-DC; Matson and González 2007) and the Pervasive Developmental Disorders Behavior Inventory (PDDBI; Cohen and Sudhalter 1999). Both tests are rating scales that can be completed in 20 min or less.

In addition to the need to differentially diagnose between different psychiatric disorders, medical conditions also need to be ruled out as symptoms of certain medical conditions may simulate symptoms of certain psychiatric disorders. As such, a medical assessment should be conducted prior to making an ASD diagnosis. The most important factors to assess during the medical evaluation would be the child’s hearing, vision, and oral functioning. Ruling out any problems with the aforementioned is

child’s hearing, vision, and oral functioning. Ruling out any problems with the aforementioned is vital to ensure that symptoms of ASD are not better accounted for by medical conditions. For example, individuals with ASD present with delays in communication and socialization. If a child is having trouble hearing or having oral motor problems, these challenges would affect their ability to speak and, subsequently, their ability to socialize with others. In addition, visual impairments could

and, subsequently, their ability to socialize with others. In addition, visual impairments could account for other symptoms such as failure to initiate and sustain eye contact and joint attention.

Lastly, intellectual disability (ID) is a highly comorbid condition with ASD. As such, the assessment process should incorporate evaluations of both adaptive skills and intellectual functioning to assess for deficits specific to these areas. Deficits in cognition and adaptive behavior are required to meet criteria for a diagnosis of ID. The assessment of intellectual functioning also assists with the differential diagnosis of ASDs, specifically between AS and AD. For instance, individuals

with the differential diagnosis of ASDs, specifically between AS and AD. For instance, individuals diagnosed with AS typically fall within the average range of cognitive functioning whereas those diagnosed with AD often have a comorbid diagnosis of ID.

Conversely, individuals diagnosed with AS tend to have higher verbal than performance IQs, and those diagnosed with HFA tend to have higher performance than verbal IQs. In sum, the assessment process is conducted to arrive at a diagnosis of either AD, AS, or PDD-NOS or to rule out these diagnoses. First, AD is characterized by impairments in all three core domain areas. Children with AD are often referred for an assessment at very young ages since parents’ first concerns typically arise during

referred for an assessment at very young ages since parents’ first concerns typically arise during the first year of life. In contrast, individuals meeting diagnostic criteria for AS are often not identified until later in childhood. Likely, this is due to deficits in socialization which are the most impairing symptom associated with a diagnosis of AS. As social demands increase with age, these deficits become more pronounced and more obvious. Thus, deficits in this area become more apparent to

become more pronounced and more obvious. Thus, deficits in this area become more apparent to the outside observer as the child develops and has more social interactions with others. In addition, unlike children diagnosed with AD, language development is not delayed for children meeting diagnostic criteria for AS. Instead, individuals diagnosed with AS tend to have exceptional vocabularies. Therefore, as toddlers, there is no obvious cause for concern for children eventually meeting criteria for

as toddlers, there is no obvious cause for concern for children eventually meeting criteria for an AS diagnosis. Lastly, a diagnosis of PDD-NOS is given when symptoms of ASD are present, but the individual does not meet the criteria for another disorder on the spectrum. Therefore, the diagnostic category of PDD-NOS is a subthreshold category. Children comprising this diagnostic category have less severe deficits in socialization and may have minimal deficits in communication or less

have less severe deficits in socialization and may have minimal deficits in communication or less presentation of restricted interests or repetitive behaviors when compared to a child meeting criteria for AD. In addition, it may be that these children present with the same symptoms of a child meeting criteria for AD, but the age of onset occurs after 36 months of age.

Future Directions The current classification system for ASD is categorical. However, this approach is problematic due to the poorly defined boundaries of the disorders comprising the autism spectrum. Due to these poorly defined boundaries, there has been a failure to find consistent differences between AD, AS, and PDD-NOS in regard to diagnostic criteria. As such, a dimensional approach to diagnosing has been proposed. This approach to diagnosing ASD is supported in the literature by

to diagnosing has been proposed. This approach to diagnosing ASD is supported in the literature by researchers who have examined the underlying latent structure of symptoms of ASDs utilizing cluster analytic techniques or taxometric analyses. Although results often contradict each other, it has been suggested that the underlying taxon of ASD is dimensional (Boisjoli 2010; Verté et al. 2006). As a result of the overlap in the behavioral phenotype of ASDs, the APA (2010) has proposed revisions

a result of the overlap in the behavioral phenotype of ASDs, the APA (2010) has proposed revisions for ASD to be included in the DSM-V, set to be published in 2013. The revisions include utilizing a dimensional approach to diagnosing ASD. As such, there will be no subcategories of ASD, but instead one diagnostic entity referred to as autism spectrum disorder. In regard to diagnostic criteria, impairment related to socialization and communication would be amalgamated into one domain. The second

related to socialization and communication would be amalgamated into one domain. The second domain refers to symptoms of restricted interests and repetitive behaviors. The third domain would indicate that symptoms need to be present in early childhood; however, early childhood is not further defined. Lastly, the symptoms must cause impairment in everyday functioning (APA 2010). These changes will bring about further modifications to the diagnostic process. For instance, parceling out

will bring about further modifications to the diagnostic process. For instance, parceling out differences between the various ASDs would no longer be necessary, since PDD-NOS, AS, and AD would no longer represent discrete diagnostic entities. However, given what will be even greater heterogeneity within the ASD diagnostic category, being able to identify symptom severity will still be critical. Even more important, existing measures that assess for symptoms of ASD would need to be renormed to

Even more important, existing measures that assess for symptoms of ASD would need to be renormed to follow the new diagnostic criteria and continuing emerging research.

Diagnostic substitution has been hypothesized as one possible explanation for why growing numbers of children have been classified with a label of autism in publicly funded service systems such as special education and state systems of care for people with developmental disabilities. The term has been used in two related ways. One refers to a historical shift in the probability of being labeled with autism, whereby some proportion of children labeled with autism in recent years would have

with autism, whereby some proportion of children labeled with autism in recent years would have been classified with a different label had they been served by the same organization at a previous point in time. The other refers to individual children initially being labeled with one diagnosis and then being reclassified with autism at a later age. In each case, the hypothesis predicts that as enrollment tallies in the autism category increased, there would be some corresponding decrease in the

tallies in the autism category increased, there would be some corresponding decrease in the number of children being enrolled and labeled in other administrative categories (e.g., ▶Intellectual Disability).

Evidence testing the diagnostic substitution hypothesis has been mixed. One study of data from California’s service system for people with developmental disabilities from 1987 to 1994 found little change in the administrative prevalence of intellectual disability, whereas autism rates increased nearly fivefold (Croen et al. 2002; Croen and Grether 2003). Another study examined special education enrollment data from Minnesota for the years 1991–2001 and found no substantial decrease in

enrollment data from Minnesota for the years 1991–2001 and found no substantial decrease in administrative prevalence for other disabilities while autism enrollment counts were increasing (Gurney et al. 2003). A study using state-level special education data for the whole United States found that the growing administrative prevalence of autism from 1994 to 2003 was strongly associated with decreasing prevalence in other disability categories, though not in every state (Shattuck 2006). A study

prevalence in other disability categories, though not in every state (Shattuck 2006). A study of special education enrollment in British Columbia from 1996 to 2004 found that nearly one third of growing autism prevalence was explained by children who had initially been classified with some other type of disability being relabeled with autism (Coo et al. 2008).

Diastat ▶Diazepam  Diazepam Rizwan Parvez Yale Child Study Center, New Haven, CT, USA  Synonyms Diastat; Valium  Definition A long-acting anxiolytic medication in the benzodiazepine class. Diazepam is commonly used in the treatment of anxiety disorders, agitation, and spasticity. Diazepam and other medicines of this class bind to benzodiazepine receptors, enhancing the inhibitory effects of γ-aminobutyric acid (GABA). Side effects of benzodiazepines can include sedation, dizziness, fatigue,

acid (GABA). Side effects of benzodiazepines can include sedation, dizziness, fatigue, and confusion. Additionally, prolonged use of diazepam or other benzodiazepines may lead to tolerance and physical dependence.

See Also ▶Anxiety   Synonyms Autism spectrum disorder (ASD); Diagnostic Behavioral Assessment for Autism Spectrum disorders-Revised (DiBAS-R); Intellectual disability (ID); Social communication and interaction (SCI); Stereotyped and restrictive behaviors and sensory interests (SRS)

Description The Diagnostic Behavioral Assessment for Autism Spectrum disorders-Revised (DiBAS-R) is a quick screening scale for adults with intellectual disability (ID) who are suspected of having autism spectrum disorder (ASD). It is based on the DSM-IV/5 and ICD-10 (APA 2013; Dilling 2014) criteria for ASD and consists of 19 items that are rated on a 4-point scale from “certainly true” to “never true.” It is completed by close caregivers and focuses on current behaviors within the past 3

true.” It is completed by close caregivers and focuses on current behaviors within the past 3 months. Each question is worded in plain language (e.g., “Can you tell how he/she feels by his/her facial expression?” or “Does he/she show challenging behavior when unpredictable changes occur?”) to allow the administration by individuals without any specific knowledge of ASD. The scale is self-explanatory and thus does not require any preparatory training. Completion and scoring takes about 5 min.

and thus does not require any preparatory training. Completion and scoring takes about 5 min. Factor analysis indicated two subscales, namely, the Social Communication and Interaction (SCI) and the Stereotypy, Rigidity, and Sensory Abnormalities (SRS) subscale. The result of the DiBAS-R is indicative of ASD if an individual shows increased scores on the overall score (>29) and on both subscales (> 21 on the SCI subscale and > 5 on the SRS subscale). A linear regression model revealed a

(> 21 on the SCI subscale and > 5 on the SRS subscale). A linear regression model revealed a significant association between the level of ID and the DiBAS-R scores, indicating an association between higher levels of ID and an increased ASD-specific symptom load. Therefore, the DiBAS-R is especially useful in individuals with mild to moderate ID. The questionnaire exists in German and English.

Historical Background Due to the lack of appropriate screening instruments for adults with ID, a population at risk for comorbid ASD, a 20-item questionnaire, the Diagnostic Behavioral Assessment for ASD (DiBAS), was developed (Sappok et al. 2014b). It is derived from the ICD-10 and DSM-5 criteria for ASD. Information from a review of the literature focusing on symptoms that differentiate between persons with ID with and without additional ASD, an analysis of the Autism Diagnostic Observation

persons with ID with and without additional ASD, an analysis of the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 1989) items and the Autism-Checklist (ACL; Sappok et al. 2014c) items, and experiences from clinical experts in the field of ID and ASD endorsed the item formulation process. The items score on a 4-point ordinal Likert scale with 3 points for “certainly true,” 2 points for “often true,” 1 point for “sometimes true,” and 0 points for “never true.” The final scores range

“often true,” 1 point for “sometimes true,” and 0 points for “never true.” The final scores range from 0 to 60 with higher scores indicating a higher ASD symptom load. These items were evaluated in terms of diagnostic validity using the final diagnostic classification of the multidisciplinary case conference as an external criterion. In a pilot study, the DiBAS was applied to 91 patients with ID and suspected ASD (Sappok et al. 2014b). The DiBAS revealed an AUC of 0.81, a sensitivity of 83%, a

and suspected ASD (Sappok et al. 2014b). The DiBAS revealed an AUC of 0.81, a sensitivity of 83%, a specificity of 64%, and a kappa of 0.47 (Sappok et al. 2014b). As 8 of the original 20 items did not differentiate sufficiently between ASD and non-ASD, in a next step, these items were replaced by another eight ICD-10/DSM-5-based questions to replenish the DiBAS-Revised (DiBAS-R).

Psychometric Data A first study assessed the DiBAS-R in a sample that consisted of 219 adults with ID and who were suspected of having ASD who were admitted to a department of psychiatry in Berlin, Germany, from January 2012 to July 2013 (Sappok et al. 2014a). The mean age was 35 years, 57% were males, and 35% of participants were diagnosed with additional ASD. Factor analysis yielded 2 consistent dimensions with 12 items in the Social Communication and Interaction subscale (SCI) and 7 items

dimensions with 12 items in the Social Communication and Interaction subscale (SCI) and 7 items in the Stereotypy, Rigidity, and Sensory Abnormalities subscale (SRS). The internal consistencies were Cronbach’s alpha = 0.91 for the SCI subscale, 0.84 for the SRS subscale, and 0.91 for the overall scale. The DiBAS-R revealed sensitivity and specificity values of 81% each (Sappok et al. 2014b). The reliability was excellent: inter-rater reliability ICC = 0.88 and test-re-test reliability r = 0.93.

was excellent: inter-rater reliability ICC = 0.88 and test-re-test reliability r = 0.93. The DiBAS-R scores were highly correlated with other ASD-specific measures (Social Communication Questionnaire (SCQ) r = 0.52 Berument et al. 1999; Rutter et al. 2003; Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) r = 0.5 Kraijer and de Bildt 2005; Autism-Checklist (ACL) r = 0.59 Sappok et al. 2014c). The low correlation with the Modified Overt Aggression Scale supported

= 0.59 Sappok et al. 2014c). The low correlation with the Modified Overt Aggression Scale supported the divergent validity of the instrument.

In a second study, an independent sample of 381 adults with ID and who were suspected of having ASD was recruited from August 2013 to December 2016 (Heinrich et al. 2018). The mean age was 40.5 years, 58% were males, and 24% were finally diagnosed with ASD. The diagnostic validity of the DiBAS-R including its given cutoff points was showing an overall agreement with the reference diagnoses of 70% (sensitivity, 82%; specificity, 67%). Sensitivity (79%) and specificity (84%) were more balanced

(sensitivity, 82%; specificity, 67%). Sensitivity (79%) and specificity (84%) were more balanced in individuals with mild to moderate ID (sensitivity, 79%; specificity, 84%). Specificity decreased to 34% in persons with severe to profound ID, while the sensitivity was still good (83%). The level of ID as well as its interaction with ASD explained a significant proportion of the variance in the DiBAS-R scores. Thus, decreasing levels of functioning may result in an increasing overlap in ASD-like

scores. Thus, decreasing levels of functioning may result in an increasing overlap in ASD-like symptomatology in individuals with and without ASD, which in turn may lead to a decrease in the diagnostic utility of the DiBAS-R scores.

In a third study, the combination of the DiBAS-R and the ACL were evaluated in 148 persons with ID who were suspected of having ASD (Mutsaerts et al. 2016). The specificity values increased from 75% for each instrument used alone to 88% when two positive screening results were used in combination. The sensitivity values increased from 75% for the DiBAS-R and 91% for the ACL to 95% when at least one positive screening result was used. Different combinations of the ASD screening instruments

one positive screening result was used. Different combinations of the ASD screening instruments DiBAS-R and ACL lead to improvements in sensitivity and specificity. The instruments can therefore be used in a complementary way to further improve the overall accuracy of each scale.

Clinical Uses The DIBAS-R can be used as a quick screening instrument for ASD in adults with ID. It is easy to administer and can be applied in various settings, e.g., hospitals or outpatient clinics or in population-based studies. No special knowledge of the diagnostic criteria of ASD is needed to complete the questionnaire, and no training is necessary to compute the final scoring. Thus, the scale can be used by general practitioners, psychiatrists, or psychologists to screen for ASD in

scale can be used by general practitioners, psychiatrists, or psychologists to screen for ASD in research and clinical practice. The administration of the scale requires about 5 min for scoring and computing and is independent of the collaboration of the examined individual. The validity and reliability results suggest that this scale represents an efficient approach to initial ASD screening of adults with ID. However, it cannot replace a comprehensive assessment for ASD such as interview-based

with ID. However, it cannot replace a comprehensive assessment for ASD such as interview-based procedures like the Autism Diagnostic Interview-Revised (ADI-R; Lord et al. 1994) or direct behavioral observations in a standardized setting like the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 1989). Its psychometric properties particularly support its use in persons with mild to moderate ID. The DiBAS-R can be applied for clinical and research purposes.

See Also ▶ADI-R ▶ADOS ▶PDD ▶SCQ   Description Dichotic listening is the auditory process that involves listening with both ears. Dichotic listening can be broken into two different processes: binaural integration and binaural separation. Binaural integration is the ability to perceive different acoustic messages presented to the left and right ears at the same time. Binaural separation is the ability to perceive an acoustic message in one ear while ignoring a different acoustic message in the

to perceive an acoustic message in one ear while ignoring a different acoustic message in the other ear. In order to perceive the acoustic messages in both ears, the outer, middle, and inner ears must be working properly, but more importantly, the auditory brainstem nuclei, auditory cortical neurons, as well as neurons in the corpus callosum must be functioning properly. Individuals with dichotic listening deficits often have difficulty hearing in the presence of background noise.

Historical Background Dichotic speech testing was first introduced by Broadbent in 1954. It requires the simultaneous presentation of different speech stimuli to each of the ears; the listener must repeat back everything that is heard (binaural integration) or what is heard in one ear only (binaural separation). In 1961, Kimura first used these tests to demonstrate hemispheric asymmetry and cortical dysfunction. She demonstrated contralateral auditory deficits following temporal lobe lesions.

dysfunction. She demonstrated contralateral auditory deficits following temporal lobe lesions. These findings indicate that if a lesion is located in the left temporal lobe, the auditory signal presented to the right ear will not be perceived. In typical individuals (those with normal hearing and no known lesions in the central auditory nervous system), a right ear advantage has consistently been reported (Berlin et al. 1973; Dirks 1964; Kimura 1961a, b). Right ear advantage refers to the

been reported (Berlin et al. 1973; Dirks 1964; Kimura 1961a, b). Right ear advantage refers to the ability to better perceive the auditory signal presented to the right ear than the speech signal in the left ear. The right ear advantage exists because the hemisphere in the brain responsible for processing the speech signal is in the left hemisphere. Since the contralateral pathways are stronger, the speech signal presented to the right ear travels directly to the left hemisphere for processing;

speech signal presented to the right ear travels directly to the left hemisphere for processing; however, the speech signal presented to the left ear must travel to the right hemisphere and across the corpus callosum to the left hemisphere to be processed (creating a slight time delay). Currently, a variety of dichotic listening tests are available for clinical use. Common dichotic speech tests, specifically binaural integration tests, are the Dichotic Digits Test (Musiek 1983; Musiek and

specifically binaural integration tests, are the Dichotic Digits Test (Musiek 1983; Musiek and Wilson 1979; Musiek et al. 1979); the Staggered Spondaic Word Test (SSW; Katz 1962), and Dichotic Consonant-Vowels (Dichotic CVs; Berlin et al. 1973). Some common binaural separation tests are Competing Sentences (Willeford 1977) and the Synthetic Sentence Identification with Contralateral Competing Message (SSI-CCM; Jerger 1970).

Psychometric Data Dichotic listening tests, such as the Dichotic Digits, Dichotic CVs, SSW, Competing Sentences, and SSI-CCM, have been shown to be sensitive and specific to central auditory nervous system lesions, including interhemispheric lesions (for review, see Musiek and Pinheiro 1985). Peripheral hearing sensitivity should be symmetrical and normal when using dichotic listening tests since any hearing differences between ears can influence test results.

Clinical Uses Dichotic listening tests are used in clinical audiology to evaluate the central auditory processes of binaural integration and separation. These tests may be used in the assessment of children or adults with possible central auditory nervous system dysfunction. Since dichotic listening tests (tests of binaural integration and separation) evaluate two critical auditory processes, it is important for these tests to be included in a central auditory processing test battery.

it is important for these tests to be included in a central auditory processing test battery. Clinically, the person administering dichotic listening tests should take into consideration the cognitive, hearing, speech, and language abilities of the individual being tested as these factors may affect performance. Thus, dichotic listening tests are not typically administered to children with autism, and performance on these tests should be interpreted with caution in this population.

Definition A didactic approach to teaching refers to a manner of instruction in which information is presented directly from the teacher to the pupil, in which the teacher selects the topic of instruction, controls instructional stimuli, obligates a response from the child, evaluates child responses, and provides reinforcement for correct responses and feedback for incorrect ones. Intervention methods for early communication in children with autism spectrum disorder (ASD) are often divided

methods for early communication in children with autism spectrum disorder (ASD) are often divided into three categories: didactic, naturalistic, and pragmatic or developmental. Didactic approaches utilize a variety of concepts from behavioral theory, including massed trials, operant conditioning, shaping, prompting, chaining, and reinforcement. Difficulty with the generalization and maintenance of behaviors learned through this method along with the passive communication acquired by many

of behaviors learned through this method along with the passive communication acquired by many children (i.e., waiting on adults’ lead during interactions) are some of the drawbacks associated with this approach. Still, the effectiveness of this approach in initiating and expanding expressive language and developing attention to language and comprehension in preverbal children with ASD is supported by research from numerous case studies and several group studies. As this approach requires a

by research from numerous case studies and several group studies. As this approach requires a notable amount of adult direction, a passive role as responder by the child, repetitive drills and practice, and specific events that should occur before and after a child’s response, this method is ideally effective if the instructor consistently monitors the student’s interest level, readiness for the information being conveyed, and the motivational value of reinforcers. The passivity and prompt

the information being conveyed, and the motivational value of reinforcers. The passivity and prompt dependence that can result from these methods led to the development of more naturalistic instructional techniques (e.g., contemporary applied behaviors analysis).

The Differential Ability Scales, Second Edition (DAS-II; Elliott 2007) is an individually administered test designed to measure distinct cognitive abilities for children and adolescents ages 2 years, 6 months to 17 years, 11 months. The DAS-II is comprised of individual subtests that evaluate strengths and weaknesses of a broad range of learning processes. A General Conceptual Ability (GCA) composite score is generated that reflects conceptual and reasoning abilities. Three cluster scores of

score is generated that reflects conceptual and reasoning abilities. Three cluster scores of the DAS-II measure more specific learning processes: verbal, nonverbal reasoning, and spatial abilities. There is also a Special Nonverbal Composite that can be derived for an individual of any age where the verbal demands are too taxing to obtain standardized results. The core subtests of the DAS-II tap into specific cognitive processes that are used to estimate the cluster and GCA scores, and the

tap into specific cognitive processes that are used to estimate the cluster and GCA scores, and the abilities they assess are directly related to educational needs at each age range. There are also Diagnostic subtests that measure memory, processing speed, and early school learning abilities. These scores do not contribute to the overall cluster or GCA scores; however, they are still important foundational skills that address a child’s profile of cognitive strengths and weaknesses, as well as

skills that address a child’s profile of cognitive strengths and weaknesses, as well as educational needs.

Core Batteries of the DAS-II There are two batteries of the DAS-II: Early Years and School Age. Within Early Years, there are two levels. The first level is for children ages 2 years, 6 months through 3 years, 5 months. This lower level consists of 4 core subtests (Verbal Comprehension [VCom], Naming Vocabulary [NVoc], Picture Similarities [PSim], and Pattern Construction [PCon]) and yields a Verbal Ability (VCom + NVoc) and Nonverbal Ability (PSim + PCon) cluster score, as well as the GCA.

Verbal Ability (VCom + NVoc) and Nonverbal Ability (PSim + PCon) cluster score, as well as the GCA. The upper level is for children ages 3 years, 6 months to 6 years, 11 months and has 6 core subtests (VCom, NVoc, PSim, Matrices [Mat], PCon, and Copying [Copy]) that yield three cluster scores: Verbal Ability (VCom + NVoc), Nonverbal Ability (PSim + Mat), and Spatial Ability (PCon + Copy), as well as the GCA. The School-Age battery of the DAS-II can be administered on children ages 7 years, 0

as the GCA. The School-Age battery of the DAS-II can be administered on children ages 7 years, 0 months to 17 years, 11 months, and it is comprised of six core subtests (Word Definitions [WDef], Verbal Similarities [VSim], Mat, Sequential and Quantitative Reasoning [SQR], Recall of Designs [RDes], and PCon) that yield three cluster scores: Verbal Ability, Nonverbal Reasoning Ability, and Spatial Ability, as well as the GCA. Both the Early Years and School-Age batteries of the DAS-II are normed

Ability, as well as the GCA. Both the Early Years and School-Age batteries of the DAS-II are normed on children between the ages of 5 years, 0 months and 8 years, 11 months. This allows the School-Age subtests to be administered for brighter young children and, in contrast, the Early Years subtests to be administered for older, less cognitively able children.

Diagnostic Subtests of the DAS-II The Early Years battery of the DAS-II consists of the following ten Diagnostic subtests: Early Number Concepts [ENS], Matching Letter-like Forms [MLLF], Phonological Processing [PhP], Recall of Sequential Order [SeqO], Recall of Digits Forward [DigF], Recall of Digits, Backward [DigB], Speed of Information Processing [SIP], Rapid Naming [RNam], Recall of Objects – Immediate and Delayed [RObI, RObD], and Recognition of Pictures [RPic]. Seven of these subtests

– Immediate and Delayed [RObI, RObD], and Recognition of Pictures [RPic]. Seven of these subtests contribute to three cluster scores: School Readiness (ENC + MLLF + PhP), Working Memory (SeqO + DigB), and Processing Speed (SIP + RNam). The School-Age battery of the DAS-II only consists of seven Diagnostic subtests that yield two cluster scores: Working Memory (SeqO + DigB) and Processing Speed (SIP + RNam). The School Readiness subtests from the Early Years battery are not included in the

(SIP + RNam). The School Readiness subtests from the Early Years battery are not included in the School-Age norms, with the exception of PhP, which has norms up to age 12 years, 11 months.

Historical Background The original Differential Ability Scales (DAS; Elliott 1990) was modeled after the British Ability Scales (BAS; Elliott et al. 1979). Both instruments were unique in the field of intelligence tests in that their focus was on distinct subtest scores that could be used to flush out cognitive profiles of strengths and weaknesses rather than on an overall intelligence quotient or estimation of IQ. This conceptualization of cognitive assessment sets the DAS and subsequent

or estimation of IQ. This conceptualization of cognitive assessment sets the DAS and subsequent second edition (DAS-II; Elliott 2007) aside from other commonly used measures, such as the Wechsler Intelligence Scale for Children, Fourth Edition (WISC-IV; Wechsler 2003) or Stanford-Binet Intelligence Scales, Fifth Edition (SB5; Roid 2003), where the theoretical models tend to focus more on generalized intelligence than on distinct cognitive abilities. Nevertheless, the DAS and DAS-II have an

intelligence than on distinct cognitive abilities. Nevertheless, the DAS and DAS-II have an overall composite score that reflects general cognitive functioning (i.e., General Conceptual Ability score) and that is derived from those subtests which load highest on the factor of general intelligence, or g. This results in the GCA being a more refined score than other measures of global intelligence that are derived from a broader collection of subtests. However, examiners are cautioned against

that are derived from a broader collection of subtests. However, examiners are cautioned against interpreting the GCA as a global measure of functioning, as many children have a variable cognitive profile that one general score cannot appropriately encapsulate. This is particularly the case for children with autism spectrum disorders (ASD), where scatter within a cognitive profile is the norm rather than the exception (e.g., Klin et al. 2005). Although the theoretical development of the BAS,

than the exception (e.g., Klin et al. 2005). Although the theoretical development of the BAS, DAS, BAS-II (Elliott 1996), and DAS-II predated theoretical work on the Cattell-Horn-Carroll theory of intelligence (CHC; McGrew 2005), the structure of the DAS-II fits well into the seven-factor CHC model. For instance, the DAS-II Verbal Ability cluster measures crystallized intelligence (Gc), the Nonverbal Reasoning cluster measures fluid intelligence (Gf), the Spatial Ability cluster measures

Nonverbal Reasoning cluster measures fluid intelligence (Gf), the Spatial Ability cluster measures visual-spatial processing (Gv), the Working Memory diagnostic cluster measures short-term memory (Gsm), the Recall of Objects subtest measures long-term storage and retrieval (Glr), the Processing Speed cluster measures cognitive processing speed (Gs), and the Phonological Processing subtest measures auditory processing (Ga).

Psychometric Data The DAS-II has been standardized on a normative sample of 3480 children ages 2 years, 6 months to 17 years, 11 months that is representative of the general population. Data are also available for a range of clinical samples, including developmental risk, learning disabilities, attention deficit/hyperactivity disorder, mild to moderate intellectual disability, and the gifted and talented. On the DAS and DAS-II, Verbal, Nonverbal, Spatial, and Special Nonverbal cluster scores,

talented. On the DAS and DAS-II, Verbal, Nonverbal, Spatial, and Special Nonverbal cluster scores, as well as the GCA score, are reported in standard scores that have a mean of 100 and standard deviation of 15 and that range from 30 to 170. Individual subtest scores are reported as Tscores that have a mean of 50 and a standard deviation of 10 and that range from 10 to 90. T scores are derived from ability scores, which are based on the number of correct responses (i.e., the raw scores) and on

ability scores, which are based on the number of correct responses (i.e., the raw scores) and on the difficulty of administered items, following the Rasch Model of item response theory. The administration and scoring system of the DAS and DAS-II is also different from other common measures in that raw scores are computed based on the number of items administered within a response set, rather than calculating this number in addition to items below the basal. In this way, children are

rather than calculating this number in addition to items below the basal. In this way, children are administered only those set of items that are appropriate in difficulty to their ability level. Subtest scores can be presented as age equivalents that represent the median ability score for each child’s performance, and descriptive categories are provided for standard scores that range from “Very High” (70 and above) to “Very Low” (69 and below).

The DAS-II has strong internal reliability, with average reliability coefficients for the Early Years subtests ranging from .79 to .94 and for the School-Age subtests ranging from .74 to .96. The average reliability for the DAS-II GCA is .95 for Early Years and .96 for School Age. Confirmatory factor analyses were conducted to assess the internal validity of the DAS-II, and general results confirmed the existing clusters; for instance, the structure of cognitive abilities varies with age, with

the existing clusters; for instance, the structure of cognitive abilities varies with age, with fewer models emerging for the youngest children (e.g., Verbal and Nonverbal clusters) and additional models emerging with age (e.g., Spatial, Short-term Memory, and Cognitive Speed clusters).

Correlations between the DAS and DAS-II are strong, with .88 for the GCA and .85 for the SNC. The correlation between the DAS-II GCA and the Wechsler Preschool and Primary Scale of Intelligence, Third Edition (WPPSI-III; Wechsler 2002) Full Scale IQ is .87; however, WPPSI-III Index and FSIQ scores range from 1.7 to 5.1 points higher than DAS-II cluster scores. WISC-IV Index and FSIQ scores also range from 1.2 to 6.6 points higher than DAS-II cluster scores, with a correlation coefficient of

range from 1.2 to 6.6 points higher than DAS-II cluster scores, with a correlation coefficient of .84 between the two measures. In nonclinical samples, the correlation between the DAS-II GCA and measures of academic achievement is as follows: .82 with the total score of the Wechsler Individual Achievement Test, Second Edition (WIAT-II; Harcourt Assessment 2005); .81 with the Comprehensive Achievement Composite of the Kaufman Test of Educational Achievement, Second Edition (KTEA-II; Kaufman and

Composite of the Kaufman Test of Educational Achievement, Second Edition (KTEA-II; Kaufman and Kaufman 2004); and .80 with the Total Achievement score of the Woodcock-Johnson III Tests of Cognitive Abilities (WJ-III; Woodcock et al. 2001).

Clinical Uses There are several clinical benefits to using the DAS-II when assessing individuals with autism spectrum disorders (ASD; Klin et al. 2005; Saulnier et al. 2011). These advantages include the following:

1.  The teaching items that are provided within each DAS-II domain are extraordinarily useful when complex instructions impede a child’s ability to comprehend a given verbal request. When the examiner is allowed to model or demonstrate the correct response, the child is better able to comprehend the nature of the task and successfully complete a subtest on which they otherwise might have failed to obtain a basal level of performance.

2.  The extended norms on the DAS-II Early Years battery allow for obtaining standard scores for older, more impaired individuals through age 8 years, 11 months – an option not available in other measures (Elliott 2007).
3.  The extended norms of the School-Age battery down to age 5 allow for adequately testing younger children with ASD with more advanced cognitive skills.

4.  The Special Nonverbal Composite makes it particularly appealing for individuals on the autism spectrum with significant language vulnerabilities for whom the language demands on the verbal tasks are too taxing. The SNC is also useful for other unique samples, such as children with speech, language, and/or hearing impairments or children who are not fluent in English.

5.  The results can generate recommendations for educational and treatment programming that are clinically relevant to each child.

The DAS-II is also extremely useful for clinical research in ASD. First, the extensive age range makes it possible to conduct scientific studies on both cohort and longitudinal studies of children between the ages of 2 and 17. Second, the extended norms allow for utilizing the same battery for varying levels of functioning. Finally, the core subtests can be administered quickly while generating a more comprehensive measure of cognitive functioning than an abbreviated measure of intelligence.

There have been several studies using the DAS that highlight its utility in detecting learning disabilities and cognitive delays. For instance, in one study comparing composite scores between the DAS and WISC-III, children with learning disabilities evidenced a specific weakness in the Nonverbal Reasoning cluster of the DAS that was not demonstrated on the Perceptual Reasoning Index of the WISC-III (Dumont et al. 1996). The majority of research on cognitive profiles in autism spectrum

WISC-III (Dumont et al. 1996). The majority of research on cognitive profiles in autism spectrum disorders (ASD) has been conducted using the Wechsler Scales. Less research has investigated DAS and DAS-II profiles in ASD, despite the fact that many researchers have used both measures as part of the characterization process for research paradigms. A study conducted by Joseph, Tager-Flusberg, and Lord (2002) used the DAS on a longitudinal sample of children with and without ASD. They found that

Lord (2002) used the DAS on a longitudinal sample of children with and without ASD. They found that the majority of preschool-aged children exhibited lower verbal than nonverbal cluster scores and that greater discrepancies between verbal and nonverbal abilities were detected in ASD vs. the normative sample, with this gap widening with age. Furthermore, children with larger gaps between their verbal and nonverbal skills had greater social impairments, and impaired social functioning was

verbal and nonverbal skills had greater social impairments, and impaired social functioning was independent of their verbal skills.

Differential reinforcement is the process of reinforcing a specific response in a particular context and not reinforcing (i.e., extinguishing) other responses. More specifically, differential reinforcement involves providing either positive or negative reinforcement for a targeted response (or targeted member of a response class) and withholding reinforcement from all other responses (or members of a response class). The withholding of reinforcement is defined as “extinction.” Thus,

members of a response class). The withholding of reinforcement is defined as “extinction.” Thus, differential reinforcement is a two-part process – reinforcing the desired response(s) and extinguishing all other responses. For example, a parent might reinforce with praise a young child calling out the mother’s name and ignoring (and thus not reinforcing) the child’s behavior of hitting the parent. Another example would be a teacher reinforcing (with praise and attention) a child raising her

Another example would be a teacher reinforcing (with praise and attention) a child raising her hand before being called upon to answer a question and ignoring that child if she were to shout out the answer without raising her hand. The goal of differential reinforcement is to increase the strength of the response being reinforced, while weakening the strength of the other responses not being reinforced.

Current Knowledge A basic principle in understanding differential reinforcement and how people learn in most situations is the concept of discrimination. Basically, discrimination is a process for behaving one way in one situation or context, and behaving in a completely different way in a different situation or context. Thus, discrimination is the ability to tell the difference between environmental events (or contexts or cues) and behaving accordingly. Discrimination typically develops as a

events (or contexts or cues) and behaving accordingly. Discrimination typically develops as a result of differential reinforcement. Almost all learning occurs due to the concept of discrimination and differential reinforcement. For example, consider learning the letters of the alphabet. When the letter “B” is shown and the learner asked to identify the letter, indicating “B” will be reinforced and naming any other letter will not be. This process of differentially reinforcing the learner’s

and naming any other letter will not be. This process of differentially reinforcing the learner’s responses (as correct and incorrect) results in learning of the alphabet. Consider learning to speak. When an infant says “mama” in the presence of the mother, that response will be reinforced with smiles, hugs, and positive attention. If the infant says “mama” in the presence of the father, there will be no reinforcement. Differentially reinforcing a response in one context (i.e., in presence of

be no reinforcement. Differentially reinforcing a response in one context (i.e., in presence of the mother) and not in another (i.e., in the presence of the father) results in the baby learning what to say in the presence of each parent. Consider the acquisition of social behaviors. Some young children refuse to share their toys. When this occurs, the adult rarely reinforces such selfishness. However, when a child does in fact share her toys, adults provide positive attention and reinforcement.

when a child does in fact share her toys, adults provide positive attention and reinforcement. In this case, the adult responds differently to two different behaviors – sharing and not sharing. Through this process, the child learns that sharing is preferred and hoarding toys is not. Thus, virtually all learning is accomplished through the process of learning discriminations via differential reinforcement.

The procedure of differential reinforcement has been used to both increase and decrease the strength (future rate) of specific behaviors. However, even though the goals are different (when considering increasing or decreasing future rates of behaviors), the procedure of differential reinforcement is the same. The basic procedural components of all differential reinforcement programs are these. First, the interventionist must operationally define the target behavior to be changed. That could be

the interventionist must operationally define the target behavior to be changed. That could be an appropriate behavior that must be increased in rate, a behavior deemed inappropriate that must be decreased in rate, or both. The behavior must be operationally defined to allow for both correct recording of its occurrence (so the interventionist can objectively determine if the differential reinforcement procedure is having the desired effect) as well as for accurate implementation of the

reinforcement procedure is having the desired effect) as well as for accurate implementation of the procedure (i.e., so that the interventionist(s) reinforce (or not reinforce) the correct response). The second step in using differential reinforcement is to determine the actual reinforcement that will be made contingent upon the required response. This, by necessity, will vary across the individual due to the fact that what constitutes a motivating reinforcer is so personalized across

individual due to the fact that what constitutes a motivating reinforcer is so personalized across individuals. However, most of the time, the interventionist will use some form of positive reinforcement, such as praise, smiles, good grades, tokens, or other forms of tangible reinforcement found desirable by the individual. On occasion, the interventionist might use a form of negative reinforcement, such as allowing the individual to escape a work demand contingent upon displaying the targeted

such as allowing the individual to escape a work demand contingent upon displaying the targeted response. For example, in the case where an individual tantrums in order to escape or avoid work, the caregiver might allow that person to take a break from work if the individual asks for a break instead of tantruming. Allowing the individual to briefly escape an unpleasant work demand negatively reinforces asking for a break. However, if the individual continues to tantrum and does not ask

reinforces asking for a break. However, if the individual continues to tantrum and does not ask appropriately for a break, the caregiver would continue to keep the person in the demand situation by requiring work. The use of formal reinforcement preference assessments is considered best practice to determine the most motivating reward items available. The last step in the procedure is to determine if and how reinforcement can be withheld from the individual when she/he displays a behavior other

if and how reinforcement can be withheld from the individual when she/he displays a behavior other than the targeted one. In the case of using differential reinforcement to increase the strength of an appropriate behavior, the interventionist must only reinforce the targeted appropriate behavior. In the example of a child shouting out answers instead of raising a hand, the teacher will reinforce hand raising but will have to decide exactly how to respond to the shouting out of answers. The

hand raising but will have to decide exactly how to respond to the shouting out of answers. The interventionist will need to ensure that no positive reinforcement follows any behavior other than the targeted one. An important question is whether the inappropriate behavior can be ignored. In the case of shouting out an answer, it is probably the case that planned ignoring can be used effectively. However, in other situations, with other behaviors such as self-injury or aggression, planned

However, in other situations, with other behaviors such as self-injury or aggression, planned ignoring may be difficult.

There are many variations of differential reinforcement procedures that have been used. The most common ones are differential reinforcement of alternative behaviors (DRA), differential reinforcement of incompatible behaviors (DRI), differential reinforcement of other behaviors (DRO), and differential reinforcement of low rate behaviors (DRL; see “See Also” section, below).

Differential reinforcement is one of the most widely used procedures to change behavior. The treatment of problem behaviors has evolved to the point that there is a common assumption that reinforcement-based procedures are considered to be best practice and the most ethical strategies to implement. The procedure is a natural one to most interventionists, in which desired behaviors are rewarded and all other behaviors not rewarded. The research has shown that differential reinforcement

and all other behaviors not rewarded. The research has shown that differential reinforcement procedures can be very effective in changing behaviors, and – since they are based on the use of reinforcement (most of the time, positive, as opposed to negative) – many caregivers are comfortable with using such interventions. An advantage of differential reinforcement procedures is that caregivers have a systematic way to implement a technique that focuses on appropriate (positive) behaviors. Another

a systematic way to implement a technique that focuses on appropriate (positive) behaviors. Another advantage is that such procedures maintain a positive learning atmosphere and allow the instructional (or work activities) to continue in the context in which these procedures are used. A third advantage is that differential reinforcement can be effective without the addition of aversive or unpleasant procedures, such as punishment. Differential reinforcement is also a good procedure to implement

procedures, such as punishment. Differential reinforcement is also a good procedure to implement when targeting problem behaviors due to the fact that this procedure can be used before and after the administration of functional assessment strategies to determine the function of that behavior. In these cases, differential reinforcement can possibly establish appropriate replacement behaviors, by orienting staff to notice and reinforce desired behaviors. This is important because differential

orienting staff to notice and reinforce desired behaviors. This is important because differential reinforcement procedures do not address the function of challenging behaviors. That is, these procedures are used in an attempt to “override” the reinforcing function of problem behaviors.

Definition Differential reinforcement of low rates of responding (DRL) is a procedure in which the implementer can lower the rate of a response by reinforcing fewer incidents of that response or by reinforcing longer time intervals between incidents of the response. For example, if an individual makes profanity statements an average of 20 times per half hour, an interventionist could provide a positive reinforcer contingent upon that individual making these statements 18 or fewer times per

a positive reinforcer contingent upon that individual making these statements 18 or fewer times per half hour. A related term is differential reinforcement of diminishing rates (DRD). The technical difference between DRL and DRD is that in DRD, reinforcement follows a response that has been preceded by a minimum amount of time since the last response. DRL technically refers to providing reinforcement for fewer and fewer responses exhibited by the individual. However, DRL is the most common term

for fewer and fewer responses exhibited by the individual. However, DRL is the most common term and often refers to both of these procedures.

Historical Background The three general areas of concern for persons with autism are social, behavior, and language. Many persons with this diagnosis display behaviors that are deemed inappropriate, such as aggression, self-stimulation, or self-injury that, if left untreated, can greatly interfere with the individual acquiring positive adaptive skills and becoming more independent. Psychologists and educators have long investigated the best treatment for these types of concerns. One approach

and educators have long investigated the best treatment for these types of concerns. One approach that has been studied extensively has been the use of restrictive or punitive procedures. These involve either presenting a stimulus that is aversive or unpleasant to the individual following the occurrence of the unwanted behavior or removing a desirable stimulus following the display of the unwanted behavior. Although these procedures have been shown to be effective in eliminating a wide variety

behavior. Although these procedures have been shown to be effective in eliminating a wide variety of unwanted behaviors, they have been associated with a number of negative side effects, as well as potential ethical problems, including misuse and abuse. Alternatives to punishment have been pursued vigorously in the research over the past few decades. One development has been that of functional assessment procedures, which allow the practitioner to determine the reinforcement maintaining the

assessment procedures, which allow the practitioner to determine the reinforcement maintaining the unwanted behaviors. Research has shown that if the reinforcement maintaining an unwanted behavior can be prevented from occurring, then the unwanted behavior will reduce in strength. Similarly, if an appropriate behavior that will earn the same reinforcement (function) as the unwanted behavior can be taught, then the individual will likely shift to the appropriate replacement behavior and reduce

be taught, then the individual will likely shift to the appropriate replacement behavior and reduce the occurrence of the unwanted behavior. Along with functional assessment, researchers have developed a set of procedures that emphasize the use of positive reinforcement to reduce unwanted behaviors. Among these is the DRL procedure that focuses on reinforcing less occurrences of unwanted behavior and not reinforcing higher occurrences of unwanted behavior. The findings of dozens of studies show

and not reinforcing higher occurrences of unwanted behavior. The findings of dozens of studies show that using reinforcement in particular ways can have the same results as punishment in stopping targeted behaviors.

Current Knowledge Even though the DRL procedure is used to reduce rates of a problem behavior, the reinforcement is delivered after the occurrence of that behavior, which may seem counterintuitive. This is in contrast to the differential reinforcement alternative behavior (DRA), which reinforces appropriate replacement behaviors; differential reinforcement of incompatible behavior (DRI), which provides reinforcement for appropriate replacement behaviors that are physically incompatible with

provides reinforcement for appropriate replacement behaviors that are physically incompatible with the targeted unwanted behaviors; or differential reinforcement of other behavior (DRO) procedure, in which the reinforcement is delivered in the absence of the target behavior. When using DRL, reinforcement occurs following an unwanted response that remains below a certain criterion or following an unwanted response that was preceded by progressively longer intervals of time from the previous

an unwanted response that was preceded by progressively longer intervals of time from the previous response.

It is important to point out that the goal of a DRL procedure is to simply reduce the rate of the targeted behavior but not to eliminate it entirely. Some behaviors that might be considered undesirable at higher rates may be acceptably tolerated at lower rates, without needing to reduce them to zero. For example, perhaps it is acceptable for a child to get out of their seat in school a few times a week, but unacceptable and intolerable if it were to occur several times an hour. A child with

a week, but unacceptable and intolerable if it were to occur several times an hour. A child with autism who spontaneously verbalizes movie scripts only a few times per week could be considered more tolerable than engaging in this behavior several times per half-hour period. Thus, the DRL procedure is typically used when considering reducing behavior that is considered acceptable at lower rates but not at higher levels.

There are several variations of the basic DRL procedure. In “full session DRL,” the implementer provides reinforcement at the end of a session or a predetermined amount of time if the number of incidents of the undesired behavior falls at or below a predetermined criterion level. For example, a teacher divides the school day into 12 30-min sessions or time periods. Each half-hour consists of one “session.” A child engages in tantrums on an average of six per half-hour period. The initial rule

“session.” A child engages in tantrums on an average of six per half-hour period. The initial rule for delivering reinforcement in this “full session DRL” program would be that the child engages in five or fewer tantrums in a session. As the rate drops to consistently five or fewer, a new rule would be implemented, whereby reinforcement would be made contingent upon four or fewer occurrences in the session. Over time, by gradually reducing the criterion level, the DRL program will eventually

the session. Over time, by gradually reducing the criterion level, the DRL program will eventually bring the rate of behavior to an acceptable level. Note also that in full session DRL, the individual has an opportunity to earn reinforcement numerous times, across the multiple sessions, since each new session signals a new opportunity.

Another type of DRL is the “interval DRL,” which is a procedure for implementing DRL in which the total session is divided into equal intervals and reinforcement is provided at the end of each interval in which the number of responses during the interval is equal to or below a criterion limit. Similar to the full session DRL, this would involve taking the full session and breaking it down into smaller intervals and reinforcement could be delivered during each of those intervals. For example, a

intervals and reinforcement could be delivered during each of those intervals. For example, a teacher divides a 30-min lunch period into three 10-min intervals. A child is out of his or her seat on an average of 21 times during the lunch period. The rule for delivering reinforcement in this “interval DRL” would be that if the child was out of seat six or fewer times in each 10-min period, reinforcement would be provided. A potential advantage of an interval DRL program is that the individual

would be provided. A potential advantage of an interval DRL program is that the individual has multiple opportunities within a session to earn reinforcement, as opposed to just one opportunity (at the end of the session).

A third variation of the basic DRL procedure is the “space-responding DRL” (sometimes called DRD). This is a procedure for implementing DRL in which reinforcement follows each occurrence of the target behavior that is separated from the previous response by a minimum inter-response time (IRT). For example, a child correctly answers questions asked by the teacher but answers so quickly that other students have no opportunity to be called on. The teacher makes a rule with this student that to be

students have no opportunity to be called on. The teacher makes a rule with this student that to be called on to answer a question, 3 min must have elapsed since the child last answered a question. Thus, the rule for reinforcement is that only responses that have been preceded by a minimum of 3 min from the previous response will receive reinforcement.

The basic procedural components of all DRL procedures are these. First, the interventionist must operationally define the targeted unwanted behavior to be changed. This must be done to allow for both correct recording of its occurrence (so the interventionist can objectively determine if the differential reinforcement procedure is having the desired weakening effect) and accurate implementation of the procedure (i.e., so that the interventionist(s) implement the DRL plan consistently). The

of the procedure (i.e., so that the interventionist(s) implement the DRL plan consistently). The second step in using DRL is to determine the current “operant level” of the response. That is, the interventionist must have data showing the current rate of the behavior before implementing DRL. Depending upon the type of DRL procedure used, data might show the total number of responses during a day, the total number of responses (on average) during individual sessions, and/or the average amount of

the total number of responses (on average) during individual sessions, and/or the average amount of time between occurrences of the targeted undesired behavior. The third step in using DRL procedures is to determine the actual reinforcement that will be made contingent upon the response meeting the rule for earning reinforcement. This, by necessity, will vary across individuals due to the fact that what constitutes a motivating reinforcer is so personalized. However, most of the time, the

that what constitutes a motivating reinforcer is so personalized. However, most of the time, the interventionist will use some form of positive reinforcement, such as praise, smiles, tokens, or other forms of tangible reinforcement desired by the learner. On occasion, the interventionist might use a form of negative reinforcement, such as allowing the individual to escape a work demand contingent upon displaying the targeted response. For example, in the case where a person tantrums in order to

upon displaying the targeted response. For example, in the case where a person tantrums in order to escape or avoid work, the caregiver might allow the individual to take a break from work if she/he asks for a break instead of tantruming. In this procedure, asking for a break is negatively reinforced by allowing the individual to briefly escape an unpleasant work demand. However, if the person continues to tantrum and does not ask appropriately for a break, the caregiver would continue to keep

to tantrum and does not ask appropriately for a break, the caregiver would continue to keep the individual in the demand situation and constantly require work. The use of formal reinforcement preference assessments is considered a best practice to determine the most motivating reward items available.

The last step in the procedure is to determine the actual rule for providing reinforcement. Three rules or criteria must be planned. First, the rule for what level of behavior will be required as the initial new criterion must be established. To determine this, the interventionist would set the initial criterion at or a little below the operant level. For example, if the operant level was ten occurrences per session or interval, the initial DRL criterion would be anywhere from eight to ten.

occurrences per session or interval, the initial DRL criterion would be anywhere from eight to ten. The second rule that must be determined is the criterion for changing from the current criterion to a new, lower one. This criterion would specify the number of sessions that must be at the criterion level before changing to a new one. For example, the interventionist may decide that if the criterion was met, or below, for three consecutive sessions, the next lower criterion would be implemented.

was met, or below, for three consecutive sessions, the next lower criterion would be implemented. The final rule that must be established is the ultimate, terminal criterion at which point the interventionist would consider an acceptable level of the behavior and at which point the DRL plan would be discontinued. For example, if the operant level was ten per session, the interventionist may set two per session as the ultimate criterion to discontinue the DRL.

An excellent example of DRL that has been shown to be effective is called the “Good Behavior Game.” This procedure involves dividing a group of individuals (such as students in a classroom) into two or more teams. The goal is to be the team with the fewest occurrences of undesired behaviors. Generally, the interventionist would periodically observe each team and note whether or not undesired behaviors are occurring. After a set period of time (e.g., end of the day, before lunch, etc.), the

behaviors are occurring. After a set period of time (e.g., end of the day, before lunch, etc.), the team with the fewest occurrences of the targeted undesired behavior will earn some type of positive reinforcer.

DRL is a positive procedure in that it utilizes only reinforcement to reduce undesired behaviors. It is also advantageous in that it is more easily tolerated than a behavior-reduction procedure that only provides reinforcement for the absence of the targeted behavior (i.e., DRO). The goal of DRO is the cessation of the unwanted behavior. A complete elimination would generally be considered more difficult to achieve than allowing some (but lower) level of the target behavior. The individual

difficult to achieve than allowing some (but lower) level of the target behavior. The individual exhibiting the target behavior may more easily tolerate being allowed some amount of unwanted behavior, than attempting to eliminate it altogether. That is why DRL is often successful; it results in a targeted behavior that is inappropriate at higher levels becoming appropriate and tolerated at lower levels. Lastly, DRL procedures have been shown in the literature to be effective procedures with a

levels. Lastly, DRL procedures have been shown in the literature to be effective procedures with a wide variety of individuals and target problems; thus, it has good generalization evidence.

There are several considerations for using DRL most effectively. Firstly, the interventionist must recognize that the DRL procedure does not produce rapid behavior change; rather, it produces slow and gradual changes. So, one must use DRL to change behaviors that are amenable to gradual change. Secondly, practitioners should not use DRL when targeting behaviors that could be physically harmful to the individual or others (such as self-injury, aggression, etc.). For those categories of

to the individual or others (such as self-injury, aggression, etc.). For those categories of behaviors, the interventionist should use procedures that have more of an immediate impact or combine DRL with such strategies. Lastly, DRL does, by its nature, focus on the undesired behavior, rather than reinforcing appropriate replacement behaviors. This suggests that the implementer combines DRL with procedures that target and reinforce appropriate replacement behaviors.

Future Directions When developing programs for children with autism, often part of that programming focuses on attempting to reduce problem behaviors. The set of DRL programs could be useful in that regard, depending upon the characteristics of the undesired behavior. Future directions could include clarifying the specific behavioral or contextual variables that would suggest a particular DRL program be used over another type of program, such as DRA, DRI, DRO, or more restrictive techniques.

be used over another type of program, such as DRA, DRI, DRO, or more restrictive techniques. In addition, rules for determining the combination of DRL with other programs to specifically teach, model, and reinforce appropriate incompatible behaviors (to the undesired ones) would be useful for practitioners.

Differential reinforcement of alternative behaviors (DRA) and differential reinforcement of incompatible behaviors (DRI) are both procedures designed to decrease the rate of targeted unwanted behaviors. Targeted behaviors decrease due to two mechanisms – reinforcement of appropriate behaviors that will replace the unwanted behavior and the withholding of reinforcement that historically followed the unwanted behavior. DRI is often considered a type of DRA procedure. With both of these

followed the unwanted behavior. DRI is often considered a type of DRA procedure. With both of these procedures, reinforcement is contingent upon specific behaviors that will replace the unwanted behavior. The nature of the replacement behaviors marks the difference between DRA and DRI. In DRI, the replacement behaviors are physically incompatible with the unwanted behavior. They both cannot be done at the same time. For example, if the unwanted behavior were out of seat, a physically

be done at the same time. For example, if the unwanted behavior were out of seat, a physically incompatible behavior would be staying in seat. If the unwanted behavior were putting fingers in the mouth, a physically incompatible behavior would be putting hands in pants pockets. Thus, with a DRI procedure, the replacement behavior is both an appropriate one, as well as physically incompatible with the unwanted behavior. In DRA, there is no concern about the replacement behaviors being physically

the unwanted behavior. In DRA, there is no concern about the replacement behaviors being physically incompatible; it is simply an appropriate behavior that could fulfill the same function as the unwanted behavior. For example, if the unwanted behavior were screaming (to indicate a need to escape a work demand), an interventionist might use a DRA procedure and select an appropriate replacement behavior such as pointing to a card to signal a need to break from work. Another example would be that

such as pointing to a card to signal a need to break from work. Another example would be that if the unwanted behavior were a child inappropriately calling out answers in class (without waiting for the teacher to call on her), an appropriate replacement behavior would be to raise her hand to be called on. Note that in both of these examples, the appropriate replacement behavior is not physically incompatible with the targeted unwanted behavior; both the unwanted behavior and the replacement

incompatible with the targeted unwanted behavior; both the unwanted behavior and the replacement behavior could be displayed simultaneously. In both procedures, reinforcement is delivered for the alternative or incompatible behavior, and reinforcement is withheld (extinguished) from the targeted unwanted behavior. Both procedures result in a decrease in rate of the unwanted behavior. The strength of these procedures lies in the discrimination between the two – the alternative or incompatible

of these procedures lies in the discrimination between the two – the alternative or incompatible behaviors are reinforced, while the unwanted behaviors are not.

Historical Background The three general areas of concern for persons with autism are social, behavior, and language. Many persons with this diagnosis display behaviors that are deemed inappropriate, such as aggression, self-stimulation, or self-injury and that greatly interfere with the person learning positive adaptive skills and increasing their independence in life. Psychologists and educators have long investigated the best treatment for these types of concerns. One approach that has been

have long investigated the best treatment for these types of concerns. One approach that has been studied extensively has been the use of restrictive or punitive procedures. These involve either presenting a stimulus that is aversive or unpleasant to the individual following the occurrence of the unwanted behavior or by removing a desirable stimulus following the display of the unwanted behavior. Although these procedures have been shown to be effective in eliminating a wide variety of unwanted

Although these procedures have been shown to be effective in eliminating a wide variety of unwanted behaviors, they have been associated with a number of negative side effects, as well as potential ethical problems, including misuse and abuse. Alternatives to punishment have been pursued vigorously in the research over the past few decades. One development has been that of functional assessment procedures, which allow the practitioner to determine the reinforcement maintaining the unwanted

procedures, which allow the practitioner to determine the reinforcement maintaining the unwanted behaviors. Research has shown that if the reinforcement maintaining an unwanted behavior can be prevented from occurring, then the unwanted behavior will reduce in strength. Similarly, if an appropriate behavior that will earn the same reinforcement (function) as the unwanted behavior can be taught, then the individual will likely shift to the appropriate replacement behavior and reduce the

then the individual will likely shift to the appropriate replacement behavior and reduce the occurrence of the unwanted behavior. Along with functional assessment, researchers have developed a set of procedures that emphasize the use of positive reinforcement to reduce unwanted behaviors. Among these are the DRA and DRI procedures that focus on simultaneously reinforcing behaviors that can replace the unwanted behavior and removing the reinforcement that has maintained the targeted unwanted

the unwanted behavior and removing the reinforcement that has maintained the targeted unwanted behavior. Findings of dozens of studies show that using reinforcement in particular ways can have the same results as punishment in stopping targeted behaviors.

Current Knowledge Differential reinforcement procedures have been found to be some of the most frequently used procedures to reduce and eliminate unwanted behaviors, across educational, social, and vocational contexts. DRA is useful for behaviors that may occur at high or low rates, as this procedure involves teaching the individual to engage in a more appropriate behavior than the behavior targeted for reduction. Often, DRA is combined with DRI. DRI is preferable, as the student cannot engage

for reduction. Often, DRA is combined with DRI. DRI is preferable, as the student cannot engage in the targeted behavior for reduction since the reinforced response is physically incompatible with the unwanted behavior.

The procedural steps for both DRA and DRI are similar. First, the implementer must operationally define the targeted unwanted behavior to be reduced or eliminated so that the implementer(s) will not deliver reinforcement after its occurrence and that there will be increased accuracy in data collection, to confirm (or not) if the differential reinforcement procedure is having the desired effect. With both of these procedures, the implementer must track the occurrence of both the targeted

With both of these procedures, the implementer must track the occurrence of both the targeted unwanted behaviors, as well as the alternative and incompatible ones.

Second, the interventionist should determine the function of the unwanted behavior. This information is helpful when deciding the procedures to use to prevent the reinforcement of the unwanted behavior (see below), as well as in guiding the selection of the appropriate replacement behaviors, which is the third step. The implementer must operationally define one or more behaviors that will be (a) desirable alternatives to the unwanted behaviors, (b) fulfill the same function as the unwanted

(a) desirable alternatives to the unwanted behaviors, (b) fulfill the same function as the unwanted behaviors, and (c) preferably be physically incompatible or compete with the unwanted behaviors. For example, if the unwanted behavior is swearing when frustrated, then an alternative behavior to strengthen could be having the individual write down what is frustrating. When planning on using a DRI procedure, the implementer must define an appropriate behavior that is physically incompatible with

procedure, the implementer must define an appropriate behavior that is physically incompatible with the targeted inappropriate one. In the example of an individual swearing, an incompatible behavior to reinforce could be saying, “oh, I am so frustrated, I need help!” instead of swearing. Note that expressing frustrating using that phrase is physically incompatible with swearing.

The fourth step in using DRA or DRI is to determine the actual reinforcement that will be made contingent upon the required alternative or incompatible response. The implementer will be guided by two considerations here – the function of the unwanted behavior (determined through a functional assessment) and the preferences of the individual. Reinforcement needs to be determined based upon the particular individual with whom the implementer is working, since reinforcement is so individualized.

individual with whom the implementer is working, since reinforcement is so individualized. Most of the time, the implementer will use some form of positive reinforcement, such as praise, smiles, good grades, tokens, or other forms of tangible reinforcement desired by the person. On occasion, the implementer might use a form of negative reinforcement, such as allowing the individual to escape a work demand contingent upon displaying the targeted response. These procedures are referred to as

a work demand contingent upon displaying the targeted response. These procedures are referred to as differential negative reinforcement of alternative behaviors (DNRA) and differential negative reinforcement of incompatible behaviors (DNRI). For example, in the case where a person tantrums in order to escape or avoid work, the caregiver might allow the individual to take a break from work if she/he asks for a break instead of tantruming. Thus, in this procedure, asking for a break is negatively

asks for a break instead of tantruming. Thus, in this procedure, asking for a break is negatively reinforced by allowing the person to briefly escape an unpleasant work demand. However, if the individual continues to tantrum and does not ask appropriately for a break, the caregiver would keep the individual in the demand situation and continue to present work demands. The use of formal reinforcement preference assessments is considered best practice to determine the most motivating reward items

preference assessments is considered best practice to determine the most motivating reward items available.

The last step in the procedure is to identify the extinction procedures to implement contingent upon the occurrence of the targeted unwanted behavior. The results of the functional assessment are critically important here. Once the reinforcement for the unwanted behavior has been determined, the interventionist must plan on how to prevent that reinforcement from occurring when the unwanted behavior is emitted. In the case of using DRA and DRI, the implementer will need to ensure that no

behavior is emitted. In the case of using DRA and DRI, the implementer will need to ensure that no reinforcement follows the unwanted behavior. For example, when an individual swears, how will the implementer react? In DRA and DRI, the implementer must ignore the swearing and not comment or react to it and focus on reinforcing the occurrence of the alternative or incompatible behavior.

There are several advantages to DRA procedures. Of particular importance is the focus on appropriate behavior. These procedures require specification of appropriate and positive behaviors to strengthen in the individual, which will contribute to the individuals’ overall level of reinforcement. They learn what to do, not just what not to do. A second advantage of this group of procedures is that they are associated with few or no negative side effects, unlike more restrictive procedures, such

they are associated with few or no negative side effects, unlike more restrictive procedures, such as time-out, overcorrection, and other forms of punishment. Since DRA/DRI is associated with reinforcement for appropriate responding, the individual receiving the reinforcement will likely show positive affect, demonstrate generalized responding, and develop a positive relationship with the interventionist.

A third and equally important advantage is that practitioners view these procedures quite positively, much more so than punitive or restrictive ones. Caregivers, thus, are more likely to carry out these procedures with greater willingness and fidelity. A final advantage is that DRA procedures are associated with long-term positive change. As the unwanted behavior decreases in strength, and the appropriate behaviors increase, there should be continued suppression and elimination of the unwanted

behaviors increase, there should be continued suppression and elimination of the unwanted behavior.

When considering the use of this group of procedures, it has been shown that the effect on the targeted replacement behavior may take some time. Reinforcement does result in behavior change, but the change may not be that rapid. To increase the speed of behavior change, it is recommended selecting powerful reinforcers. Another way to further increase the speed of further progress, one should select alternative or incompatible behaviors that already exist in the individual’s repertoire. These

alternative or incompatible behaviors that already exist in the individual’s repertoire. These appropriate behaviors should already be occurring at some level so that the implementer has opportunities to reinforce them when they occur. Although interventionists could teach a new skill or behavior as the replacement behavior, this simply complicates the effort involved. As with most behaviors that are targeted for increase, it would be important to select these appropriate behaviors that will

are targeted for increase, it would be important to select these appropriate behaviors that will likely be naturally reinforced in the individual’s daily environment. It is also good practice to select these alternative and incompatible behaviors that will be less effort to emit than the targeted unwanted one. As noted earlier, of equal importance is to select replacement behaviors that are incompatible with the unwanted behavior.

In addition, there is a potential danger of a DRA procedure that focuses on a limited group of replacement behaviors of reducing the strength of other, equally appropriate replacement behaviors. For example, consider an unwanted behavior of screaming to escape or avoid a work situation. If the interventionist selected one appropriate replacement behavior, that of pointing to a break card, the individual may learn to use that card when a break is desired but at the same time, no longer asks for

may learn to use that card when a break is desired but at the same time, no longer asks for a break using words or a communication device. To avoid this potential result, the interventionist should select all replacement behaviors that could serve the same function as the targeted unwanted behavior.

Lastly, the implementer must consistently reinforce the alternative and incompatible behaviors and consistently extinguish the unwanted behavior. The procedures are less effective when some instances of the alternative or incompatible behaviors are not reinforced and some instances of the unwanted behavior continue to achieve reinforcement. Extinction of the unwanted behavior seems to be important in the success of DRA/DRI. Research has shown that these procedures will be less effective if the

in the success of DRA/DRI. Research has shown that these procedures will be less effective if the unwanted behavior continues to result in reinforcement.

Future Directions Differential reinforcement of alternative/incompatible behaviors should be seriously considered when planning on addressing unwanted behaviors. To use these procedures effectively, the practitioner must carefully determine the reinforcement for the unwanted behavior, plan powerful reinforcement to strengthen the appropriate behavior, and develop procedures for preventing the unwanted behavior from being rewarded. When working with individuals who display unwanted behaviors in

behavior from being rewarded. When working with individuals who display unwanted behaviors in which it may be difficult to prevent the reinforcement for those behaviors, caregivers will need to determine how to manipulate the reinforcement for the replacement behaviors in a way to promote their increase, regardless of the reinforcement for the unwanted behaviors. For example, the use of intermittent reinforcement, increased duration of reinforcement, or a greater magnitude of reinforcement for

reinforcement, increased duration of reinforcement, or a greater magnitude of reinforcement for the appropriate replacement behaviors could be considered.

Differential reinforcement of other behaviors (DRO) is a reinforcement procedure in which reinforcement is delivered for any response other than a specific target behavior. This procedure results in a decrease in that specific target behavior because that behavior is never followed by reinforcement; thus, it weakens in future rate. For example, if a child with autism displays self-stimulatory behavior in the form of waving both hands in front of his face, a DRO procedure would be to provide a

in the form of waving both hands in front of his face, a DRO procedure would be to provide a positive reinforcement for a 10-s period during which his hands were not waving in front of his face. Other names for this procedure include differential reinforcement of zero occurrences or omission training.

Historical Background When considering interventions for undesirable behaviors, interventionists initially found punishment procedures to be effective. Although such procedures as overcorrection, time-out, and response cost do indeed reduce unwanted behavior, there are often negative side effects for the individual being exposed to those procedures, and historically, there have been abuses using aversive techniques. As more research was conducted on dealing with unwanted behaviors,

using aversive techniques. As more research was conducted on dealing with unwanted behaviors, professionals learned that using positive procedures could be an effective tool in obtaining reductions in these behaviors. Generally speaking, differential reinforcement has been shown to both increase appropriate behaviors and reduce the strength of unwanted responses. One form of differential reinforcement that has been shown in the research to be quite effective in weakening problem behaviors is

that has been shown in the research to be quite effective in weakening problem behaviors is DRO. This technique has been shown to be effective across a wide variety of unwanted behaviors exhibited by a variety of individuals.

Current Knowledge Differential reinforcement of other behaviors (DRO) is a procedure for decreasing problem behavior in which reinforcement is contingent on the absence of the problem behavior during or at specific times. DRO is perhaps the simplest of all behavior reduction procedures as it involves the simple rule of providing reinforcement whenever the specific undesirable behavior is not displayed. DRO differs from differential reinforcement of alternative behaviors (DRA) and differential

DRO differs from differential reinforcement of alternative behaviors (DRA) and differential reinforcement of incompatible behaviors (DRI) in that with those two procedures, reinforcement follows specific appropriate responses. In DRO, reinforcement is provided contingent upon passage of time in which the targeted undesired behavior does not occur. Note that reinforcement does not follow any specific response; it can follow any response as long as that response is not the targeted undesirable

response; it can follow any response as long as that response is not the targeted undesirable behavior. Because the “other” behaviors are not defined, no one behavior is reinforced so much that it is likely to increase in strength. But what does happen is that the targeted undesirable behavior is never reinforced, so over time, it reduces in rate.

There are basically two types of DRO, whole-interval and momentary-interval. The whole-interval DRO is a procedure in which reinforcement is available at the end of a fixed interval of duration if the targeted unwanted behavior did not occur at any time throughout that interval. For example, a child with autism is often out of her seat during independent work time. A whole-interval DRO procedure could involve dividing the independent work time period into six 5-min periods. During each 5-min

could involve dividing the independent work time period into six 5-min periods. During each 5-min period, the teacher observes the child, and if the child does not get out of seat at all during a 5-min period, the teacher delivers reinforcement. However, if the child did get out of seat during a 5-min period, no reinforcement will be provided; the child will have another opportunity at the beginning of the next 5-min interval. Since the out-of-seat behavior is not reinforced by the teacher, and

of the next 5-min interval. Since the out-of-seat behavior is not reinforced by the teacher, and other behaviors are, the out-of-seat behavior should begin to diminish in rate. This procedure requires constant vigilance and observation on the part of the interventionist throughout the interval, so as to observe any occurrence of the target behavior. This DRO is appropriate for high or low rates of challenging behaviors, as the interval can be set according to the rates of challenging behaviors.

challenging behaviors, as the interval can be set according to the rates of challenging behaviors. Typically, one sets the interval just below the pre-intervention IRT duration of the problem behavior (see below).

The momentary DRO is a procedure whereby reinforcement is available at specific moments of time and delivered contingent on the problem behavior not occurring at that those precise moments. For example, a child with autism often whines while playing at home. A caregiver could make a rule that every 2 min (and exactly at the 2-min mark), the child will be provided a reinforcer if, at that very moment of observation, there is no whining being emitted. Thus, reinforcement is delivered at the

moment of observation, there is no whining being emitted. Thus, reinforcement is delivered at the moment of observation if the individual is doing anything other than whining. Note that this DRO procedure does not demand constant vigilance and attention on the part of the interventionist as does the whole-interval DRO. Using a momentary DRO allows the interventionist to be attentive to the individual only at the precise moment specified by the DRO schedule. Whether reinforcement is delivered is

only at the precise moment specified by the DRO schedule. Whether reinforcement is delivered is not dependent upon whether the targeted behavior was present or absent before or after the moment of observation; reinforcement is entirely dependent upon whether it is occurring at the precise observational moment.

There are two variations of the whole- and momentary-interval DRO procedures. The intervals can be a fixed or variable duration. Thus, a fixed-whole-interval DRO consists of the interval size being standard across all intervals. However, a variable-whole-interval DRO consists of the interval duration varying per interval. For example, the intervals could range from 5, 10, 35, 3, and so forth but varying around a set mean. Momentary-interval DRO programs can be either fixed or variable. A

but varying around a set mean. Momentary-interval DRO programs can be either fixed or variable. A fixed-momentary-interval DRO consists of the interval size being standard across all intervals; a variable-momentary-interval DRO plan allows each interval to vary around some average duration. The advantage of the variable DRO is that individuals cannot predict when the interval will end and reinforcement is available. All DRO procedures target the reduction of targeted inappropriate behavior. The

is available. All DRO procedures target the reduction of targeted inappropriate behavior. The research on which DRO procedure to use shows mixed results; both types of DRO plans can be effective in reducing the targeted undesired behavior.

The basic procedural components of all DRO procedures are these. First, the interventionist must operationally define the target behavior to be changed. That requires carefully specifying the targeted unwanted behavior to allow for both correct recording of its occurrence (so the interventionist can objectively determine if the differential reinforcement procedure is having the desired weakening effect) and accurate implementation of the procedure (i.e., so that the interventionist(s) know

effect) and accurate implementation of the procedure (i.e., so that the interventionist(s) know exactly when reinforcement should or should not be provided). The second step in using DRO is to determine the actual reinforcement that will be made contingent upon the absence of the unwanted response and how it will be delivered. This, by necessity, will vary across individuals due to the fact that what constitutes a motivating reinforcer is so personalized. However, most of the time, the

that what constitutes a motivating reinforcer is so personalized. However, most of the time, the interventionist will use some form of positive reinforcement, such as praise, smiles, tokens, or other forms of tangible reinforcement desired by the learner. On occasion, the interventionist might use a form of negative reinforcement, (termed differential negative reinforcement of other behavior, or DNRO) such as allowing the learner to escape a work demand contingent upon displaying the targeted

DNRO) such as allowing the learner to escape a work demand contingent upon displaying the targeted response. For example, in the case where an individual tantrums in order to escape or avoid work, the caregiver might allow the person to take a break from work if she/he asks for a break instead of tantruming. In this procedure, asking for a break is negatively reinforced by allowing the person to briefly escape an unpleasant work demand. However, if the individual continues to tantrum and does

briefly escape an unpleasant work demand. However, if the individual continues to tantrum and does not ask appropriately for a break, the caregiver would continue to keep the person in the demand situation and constantly require work. The use of formal reinforcement preference assessments is considered best practice to determine the most motivating reward items available.

The third step in implementing a DRO procedure is to determine which type of DRO will be used, interval or momentary, and the criteria for establishing the initial interval size and increasing the interval size as the behavior begins to weaken. Once the type of DRO program is decided, the interventionist must determine the interval size to use to begin the procedure. Research has shown the most success is seen when the initial interval size is set small and gradually lengthened over time, as

success is seen when the initial interval size is set small and gradually lengthened over time, as the targeted behavior reduces in rate. This should be based upon pre-intervention levels of the problem behavior and the average inter-response time (IRT) duration historically observed. The formula for calculating IRT is to divide the total number of responses observed during a certain time interval by the total amount of time of that interval. For example, if during pre-intervention conditions,

by the total amount of time of that interval. For example, if during pre-intervention conditions, the individual exhibits the target behavior, on average, ten times every hour, the mean interval between occurrences is 6 min (ten occurrences of the behavior divided by 60 min). That information can then be used to establish the initial interval size for the DRO procedure. Next, the interventionist must develop a criterion for increasing the interval duration as the DRO program demonstrates

must develop a criterion for increasing the interval duration as the DRO program demonstrates success. For example, if the practitioner begins with an interval size of 6 min and over 90% of the intervals shows no targeted problem behavior over 3 consecutive days, then the interval size could be increased to 7 min. Such a mastery criterion if developed, in advance, will result in both increased progress in decreasing the problem behavior and a procedure gradually easier to implement.

The last step in the procedure is to determine exactly how to respond to the display of the targeted undesired behavior. The rule in DRO is to not provide any reinforcement (regardless of function) for its occurrence. So, the interventionist must be careful not to react in any way that could possibly provide any source of reinforcement for its occurrence. An important question is whether the inappropriate behavior can be ignored or if it is such a serious behavior that some sort of

the inappropriate behavior can be ignored or if it is such a serious behavior that some sort of intervention must apply. In the case of shouting out an answer, it is probably the case that ignoring it can be done effectively. However, in other situations, with other behaviors such as self-injury or aggression, not reacting may be difficult, due to potential safety issues. In those cases, DRO may not be the method of choice.

There are several advantages to DRO such as the procedure is positive, is easy to implement, and focuses solely on the use of reinforcement to decrease undesired behaviors. Reinforcers are not removed from the individual, and few to no negative side effects are reported. Interventionists appreciate and are more willing to use positive procedures as opposed to more aversive or unpleasant interventions. Since these procedures are generally effective and positive, they are more ethically

interventions. Since these procedures are generally effective and positive, they are more ethically appropriate as a treatment choice. DRO is easy for teachers to use in most classrooms and school settings and has been shown to work across a wide variety of populations and contexts. The effect of such procedures is more rapid than simply extinguishing the targeted undesired behavior; although extinction can work, the application of DRO produces quicker change. Additionally, the effects of DRO

can work, the application of DRO produces quicker change. Additionally, the effects of DRO have been shown to be long-lasting, producing durable response suppression. A particular advantage of a momentary DRO is that it does not require such continuous attention, and for a busy teacher or parent, that can be a useful feature. With this procedure, at the moment of observation, the interventionist can interrupt what she/he is doing, observe whether or not the targeted undesirable behavior is

can interrupt what she/he is doing, observe whether or not the targeted undesirable behavior is occurring, and deliver (or not deliver) the reinforcement based upon that immediate observation.

However, there are several potential disadvantages to DRO procedures. One is that such procedures are not designed to teach and/or increase any particular appropriate behavior. Its inherent characteristic is to focus on the absence of the targeted behavior, and there is no attempt to operationally define and strengthen an appropriate replacement behavior. Another potential limitation of this procedure is that it focuses the attention of the interventionist on the negative or undesired

this procedure is that it focuses the attention of the interventionist on the negative or undesired behavior. Since its occurrence triggers whether or not reinforcement is delivered, the interventionist is paying attention primarily to whether or not the problem behavior occurs. This may result in the individual inadvertently getting attention for the problem behavior. Thus, caregivers need to be aware of any potential reaction being given to the individual following the occurrence of the

to be aware of any potential reaction being given to the individual following the occurrence of the targeted unwanted behavior. Another potential disadvantage of the DRO procedures is that since reinforcement is delivered for any response other than the targeted undesired behavior, there is a risk that other behaviors equally undesirable may inadvertently be reinforced and thus strengthened. For example, consider a DRO procedure used to reduce the self-stimulatory behavior of jumping up and

example, consider a DRO procedure used to reduce the self-stimulatory behavior of jumping up and down repeatedly. With DRO, reinforcement is given whenever jumping is not occurring. However, if the individual is not jumping but instead waving fingers in front of the face, reinforcement would be allowed (since the rule is to provide reinforcement for any response other than jumping). This potential disadvantage is possible when working with an individual who displays a large number of undesired

disadvantage is possible when working with an individual who displays a large number of undesired behaviors. If this potential exists, a recommendation would be to provide the reinforcement only when none of the undesired behaviors are occurring or to use a procedure other than DRO (such as DRA or DRI).

Future Directions DRO procedures are effective, show long-lasting results, are relatively easy to implement, and are preferred by interventionists due to their positive nature. Further clarification of the behavioral characteristics of when to use which type of DRO would enhance its use and effectiveness. Guidelines for establishing initial interval size and criterion for increasing the interval duration would be helpful as well.

Definition Diffusion tensor imaging (DTI) is a magnetic resonance imaging (MRI) modality used in brain imaging which measures characteristics of water diffusion in vivo to make inferences on the underlying neuroanatomy, such as the structural integrity of white matter. White matter structures probed include major neuronal fiber tracts such as association (e.g., superior longitudinal fasciculus), commissure (e.g., corpus callosum), and projection (e.g., corticospinal tract) fibers. Water

commissure (e.g., corpus callosum), and projection (e.g., corticospinal tract) fibers. Water diffusion can be characterized at each anatomical location by the diffusion tensor, a second-order model which provides the direction and the degree of anisotropy (i.e., directionality). The diffusion tensor can be visualized as an ellipsoid and generally aligns with the underlying white matter fibers. Diffusion properties in tissue can then be captured using various numeric metrics computed from the

Diffusion properties in tissue can then be captured using various numeric metrics computed from the tensor and commonly include fractional anisotropy (FA), radial diffusivity (RD), axial diffusivity (AD), mean diffusivity (MD), and apparent diffusion coefficient (ADC), with FA being the most widely utilized in neuropsychiatric research.

There are some general relationships between the aforementioned metrics and biological features of tissue. Thus, knowledge of these inferences can guide the interpretation of research findings using DTI. Each of these measures aims to characterize the restriction of water diffusion due to physical barriers such as membranes and myelin; therefore, they are used as surrogates for white matter structural integrity in DTI studies. RD is a measure of the inhibited water diffusion occurring across

integrity in DTI studies. RD is a measure of the inhibited water diffusion occurring across or perpendicular to nerve fibers. Causes of increased restriction perpendicular to the fiber (a low RD) include thicker myelin, a more water-impermeable myelin, denser packing of fibers, and/or smaller fiber diameters. Less restriction (a high RD) could be due to delayed myelination, loss of myelin, more water-permeable myelin, loss of axonal membrane integrity, looser fiber packing, disorganized fiber

water-permeable myelin, loss of axonal membrane integrity, looser fiber packing, disorganized fiber packing, and/or larger-diameter fibers. On the other hand, AD is a measure of water diffusion occurring along or parallel to nerve fibers. A higher AD value indicates less hindrance to water movement along axons and could be due to axonal loss and/or less-dense fiber packing. MD and ADC measure average water diffusion in all directions. Finally, FA ranges from zero to one and describes the degree

water diffusion in all directions. Finally, FA ranges from zero to one and describes the degree to which water diffusion is directionally dependent. A value of zero means that water diffusion is isotropic; it is equally restricted in all directions such that the pattern of diffusion resembles a sphere. A value of one means that water diffusion is completely restricted to a single direction. FA is most frequently used to characterize white matter integrity. Regardless of the specific measure,

is most frequently used to characterize white matter integrity. Regardless of the specific measure, however, each of these parameters provides different information about the underlying white matter architecture. Because of this, considering multiple measures has become a common approach in DTI studies.

Moreover, DTI can also be used to reconstruct the 3D structure of white matter fiber tracts using a technique called tractography or “fiber tracking.” Algorithms are used to determine 3D curves which trace fibers by following the orientation of maximum water diffusion. These fibers can then be visualized resulting in spectacular images of multiple fiber pathways. Tractography is now being used regularly in the study of neuropsychiatric disorders such as autism. Previously, such white matter

regularly in the study of neuropsychiatric disorders such as autism. Previously, such white matter anatomy could only be studied by postmortem dissection or invasive tracing studies in nonhuman animals. Because of this, tractography has been referred to as “virtual dissection.”

DTI has revolutionized the study of structural brain connectivity in humans and is extensively used in the field of autism research to study alterations in neural connectivity. In the past 5 years, there has been a surge in the number of DTI studies published in autism research with the overall consensus being that some level of impairment exists in structural brain connectivity likely in the direction of underconnectivity. The focus of this chapter is the application of DTI in the study of

direction of underconnectivity. The focus of this chapter is the application of DTI in the study of the neurobiology of autism spectrum disorders (ASD). While a brief description of the technical aspects of DTI has been provided, the reader is referred to other reading which covers the technical details of DTI in much greater detail (Mori 2007; Mori and Zhang 2006).

Historical Background Interestingly, diffusion MRI had been known for many decades as a source of obtaining tissue contrast. Early work in the 1950s by Hahn (1950), Carr and Purcell (1954), and Torrey (1956) laid the groundwork for diffusion measurements from magnetic resonance, providing an understanding of the change in the magnetic resonance signal in the presence of water diffusion. Stejskal and Tanner (1965) advanced this formulation and incorporated the diffusion tensor. Finally, Basser

and Tanner (1965) advanced this formulation and incorporated the diffusion tensor. Finally, Basser and colleagues (1994) developed the acquisition strategy that allowed computation of the diffusion tensor. Using multiple acquisitions, each sensitive to diffusion in a specified direction, the diffusion tensor can be reconstructed at each location in the brain image.

Current Knowledge At the time of this writing, there are over 30 studies using diffusion imaging, investigating the neurobiology of ASD since the first study was published in 2004 (Barnea-Goraly et al. 2004). In recent years, the number of studies has increased sharply: one study in 2004, five studies in 2007, eight studies in 2009, and 13 studies in 2010 (all reviewed below). The methods implemented in these studies are diverse, ranging from voxel-wise comparisons to tractography-based

implemented in these studies are diverse, ranging from voxel-wise comparisons to tractography-based studies. Some studies use a combination of methods or other MRI modalities such as structural and/or functional MRI. The DTI studies reviewed in this chapter are presented according to their methodology which will include voxel-wise, region of interest (ROI), tractography, combination DTI, and multimodal MRI studies. White matter properties vary with age through development. Thus, in order to

MRI studies. White matter properties vary with age through development. Thus, in order to better appreciate the developmental aspects of ASD, these DTI studies are further subdivided into child (age <13 years), adolescent (13–20 years), and adult (age ≥ 21 years) categories based mainly on the average age of ASD participants.

Voxel-Wise The first DTI study published in the autism research literature was a voxel-wise study. Thus, it comes as no surprise that voxel-wise studies are the most common of the DTI studies in ASD. In general, image volumes are warped to a common space, and then, groups are compared on a voxel-by-voxel basis within the white matter. A variety of statistical procedures are used to identify significant differences and control for false positives which can result from the large numbers of

significant differences and control for false positives which can result from the large numbers of comparisons made (each brain contains thousands of voxels). At the time of this writing, there are 10 DTI studies which utilize a voxel-wise approach in the study of ASD. Overall, these studies demonstrate diffuse abnormalities in white matter using the previously mentioned metrics, though the most commonly reported abnormality is a reduction in FA.

There are four studies which implement a voxel-wise analysis studying children with ASD. Cheung and colleagues (2009) reported on a comparison of 13 children with autism (9.3 ± 2.6 years) and 14 controls (9.9 ± 2.5 years) where FA in the autism group was significantly lower than controls in bilateral prefrontal and temporal regions, particularly in the right ventral temporal lobe adjacent to the fusiform gyrus. Additionally, FA was greater in the right inferior frontal gyrus and left occipital

fusiform gyrus. Additionally, FA was greater in the right inferior frontal gyrus and left occipital lobe. Barnea-Goraly and colleagues (2010) reported on a comparison of 13 children with autism (10.5 ± 2.0 years), 13 of their unaffected siblings (8.9 ± 1.9 years), and 11 controls (9.6 ± 2.1 years). Both the autism and unaffected sibling groups had widespread FA reductions in the frontal, parietal, and temporal lobes, including regions known to be important for social cognition. Within regions

and temporal lobes, including regions known to be important for social cognition. Within regions of reduced FA, reductions in AD with preserved RD were observed. There were no differences in white matter structure between autism and unaffected sibling groups. Sahyoun and colleagues (2010a) reported on a comparison of nine children with autism (12.8 ± 1.5 years) and 12 controls (13.3 ± 2.45 years). Controls showed increased FA within frontal white matter and the superior longitudinal fasciculus.

Controls showed increased FA within frontal white matter and the superior longitudinal fasciculus. The autism group showed increased FA within peripheral white matter, including the ventral temporal lobe. Shukla and colleagues (2011) reported on a comparison of 26 children with ASD (12.8 ± 0.6 years) and 24 controls (13.0 ± 0.6 years). The ASD group demonstrated decreased FA and increased MD and RD in numerous white matter structures: corpus callosum, anterior and posterior limbs of the

MD and RD in numerous white matter structures: corpus callosum, anterior and posterior limbs of the internal capsule, inferior longitudinal fasciculus, inferior fronto-occipital fasciculus, superior longitudinal fasciculus, cingulum, anterior thalamic radiation, and corticospinal tract. There were no areas of increased FA, reduced MD, or RD in the ASD group.

There are four studies which implement a voxel-wise analysis studying adolescents with ASD. In the first published DTI study in ASD, Barnea-Goraly and colleagues (2004) reported on a comparison of seven adolescents with autism (14.6 ± 3.4 years) and nine controls (13.4 ± 2.8 years). The autism group demonstrated reduced FA in white matter adjacent to the ventromedial prefrontal cortices, anterior cingulate gyri, and temporoparietal junctions. FA reductions were also seen adjacent to the

cingulate gyri, and temporoparietal junctions. FA reductions were also seen adjacent to the superior temporal sulcus bilaterally, temporal lobes approaching the amygdala bilaterally, occipitotemporal tracts, and corpus callosum. Cheng and colleagues (2010) compared 25 adolescents with ASD (13.71 ± 2.54 years) and 25 controls (13.51 ± 2.20 years), reporting reduced FA in the right posterior limb of internal capsule with increased RD distally and reduced AD centrally. ASD adolescents also

limb of internal capsule with increased RD distally and reduced AD centrally. ASD adolescents also demonstrated greater FA with reduced RD in the frontal lobe, greater FA with reduced RD in the right cingulate gyrus, greater FA with reduced RA with increased AD in the bilateral insula, greater FA with reduced RD in the right superior temporal gyrus, and greater FA with reduced RD in the bilateral middle cerebellar peduncle. Noriuchi and colleagues (2010) reported on a comparison of seven

middle cerebellar peduncle. Noriuchi and colleagues (2010) reported on a comparison of seven adolescents with ASD (13.96 ± 2.68 years) and seven controls (13.36 ± 2.74 years). For the ASD group, FA and AD were lower in the white matter around left dorsolateral prefrontal cortex, posterior superior temporal sulcus/temporoparietal junction, right temporal pole, amygdala, superior longitudinal fasciculus, occipitofrontal fasciculus, mid- and left anterior corpus callosum, and mid- and right

fasciculus, occipitofrontal fasciculus, mid- and left anterior corpus callosum, and mid- and right anterior cingulate cortex. Higher AD values were observed in the cerebellar vermis lobules in the ASD group. Groen and colleagues (2011) reported on a comparison of 17 adolescents with autism (14.4 ± 1.6 years) and 25 controls (15.5 ± 1.8 years). Participants with autism had lower FA in the left and right superior and inferior longitudinal fasciculi which lost significance after controlling for

right superior and inferior longitudinal fasciculi which lost significance after controlling for age and IQ. MD levels were markedly increased in the autism group throughout the brain.

In the two remaining voxel-wise studies, one examined adults only, and the other included subjects from the entire age range from children to adults. Bloemen and colleagues (2010) reported on a comparison of 13 adults with Asperger syndrome (39.0 ± 9.8 years) and 13 controls (37.0 ± 9.6 years). Adults with Asperger syndrome had lower FA than controls in 13 clusters which were largely bilateral and included white matter in the internal capsule; frontal, temporal, parietal, and occipital lobes;

included white matter in the internal capsule; frontal, temporal, parietal, and occipital lobes; cingulum; and corpus callosum. Keller and colleagues (2007) reported on a comparison of 34 children, adolescents, and adults with ASD (18.9 ± 7.3 years) and 31 controls (18.9 ± 6.2 years). Participants with ASD had lower FA in areas within and near the corpus callosum and in the right retrolenticular portion of the internal capsule.

Region of Interest (ROI) In using the ROI method, anatomical area(s) which are to be studied are traced for each individual participant, usually by hand and without knowledge of group membership, in order to obtain averaged measures (e.g., FA, RD) within the ROI that characterize the selected region for a particular participant. Comparisons can then be made testing for significant group differences. ROI studies are particularly useful when particular brain structures, which can be readily

ROI studies are particularly useful when particular brain structures, which can be readily defined, are suspected to be abnormal. By focusing on hypothesized regions, the problem of multiple comparisons is greatly reduced. At the time of this writing, there are seven DTI studies which use an ROI approach in the study of ASD. Overall, these studies demonstrate various diffusion abnormalities in most areas studied with the most common abnormality being a reduction in FA.

There are four studies which implement an ROI approach studying children with ASD. Ben Bashat and colleagues (2007) reported on a comparison of seven toddlers with autism with ages ranging from 1.8 to 3.3 years. ROI measurements in different anatomical regions revealed an increase in FA with dominance in the left hemisphere and frontal lobe. Sivaswamy and colleagues (2010) reported on a comparison of 27 children with ASD (mean age 5.0 years) and 16 controls (mean age 5.9 years) where ROIs were

of 27 children with ASD (mean age 5.0 years) and 16 controls (mean age 5.9 years) where ROIs were placed in the cerebellar peduncles. In the ASD group, there was an increase in the MD of bilateral superior cerebellar peduncles and reversal of asymmetry in FA of the middle cerebellar peduncle and inferior cerebellar peduncle. Brito and colleagues (2009) compared eight children with ASD (9.53 ± 1.83 years) and eight controls (9.57 ± 1.36 years). In the ASD group, they reported reduced FA in ROIs

years) and eight controls (9.57 ± 1.36 years). In the ASD group, they reported reduced FA in ROIs corresponding to the anterior corpus callosum, right corticospinal tract, posterior limb of right and left internal capsules, left superior cerebellar peduncle, and right and left middle cerebellar peduncles. Shukla and colleagues (2010) reported on a comparison of 26 children with ASD (12.7 ± 0.6 years) and 24 controls (13.0 ± 0.6 years). ASD children demonstrated reduced FA and increased RD for

and 24 controls (13.0 ± 0.6 years). ASD children demonstrated reduced FA and increased RD for whole-brain white matter and ROIs corresponding to the corpus callosum and internal capsule. Additionally, there was increased MD for whole-brain white matter and ROIs corresponding to the anterior and posterior limbs of the internal capsule. Finally, reduced AD was reported for the ROI of the body of the corpus callosum, and reduced FA was also found for the ROI of the middle cerebellar peduncle.

In the three remaining studies, analyses included subjects across the entire age range including children, adolescents, and adults. Lee and colleagues (2007) reported on a comparison of 43 individuals with ASD (16.2 ± 6.7 years) and 34 controls (16.4 ± 6.0 years) with ROIs capturing the superior temporal gyrus and temporal stem. In all examined regions, the ASD group demonstrated decreased FA and increased MD and RD. Lange and colleagues (2010) reported on a comparison of 30 individuals with

increased MD and RD. Lange and colleagues (2010) reported on a comparison of 30 individuals with autism (15.78 ± 5.6 years) and 30 controls (15.79 ± 5.5 years) with ROIs including superior temporal gyrus and temporal stem. Tensor skew, a measure of tensor shape, was used in addition to the more common metrics. In the superior temporal gyrus, reversed hemispheric asymmetry was reported for the autism group: tensor skew was greater on the right, and FAwas decreased on the left. Moreover, there

group: tensor skew was greater on the right, and FAwas decreased on the left. Moreover, there was also increased AD bilaterally. In the right temporal stem (but not the left), increases in MD, AD, and RD were exhibited in the autism group. Alexander and colleagues (2007) reported on a comparison of 43 individuals with ASD (16.23 ± 6.70 years) and 34 controls (16.44 ± 5.97 years) using a corpus callosum ROI. There were significant group differences in white matter volume, FA, MD, and RD which

callosum ROI. There were significant group differences in white matter volume, FA, MD, and RD which appeared to be driven by an autism subgroup with small corpus callosum volumes, high MD, low FA, and increased RD. Compared to other individuals with autism or the controls, this subgroup had lower performance IQ measures.

Tractography Tractography studies have similarities to ROI studies, except the area of interest is defined using tractography. The results of tractography are very sensitive to the method and parameters used in creating these tract volumes; thus, great care must be taken to ensure reliability and blindness. In a manner analogous to ROI studies, diffusion metrics captured within the tract volume are analyzed. In addition, geometric properties of the tracts can also be obtained (e.g., lengths,

are analyzed. In addition, geometric properties of the tracts can also be obtained (e.g., lengths, volumes). Comparisons can be made by averaging these measures and comparing means between groups. At the time of this writing, there are six DTI studies which utilize a tractography approach in the study of the neurobiology of ASD. Overall, studies using tractography demonstrate diffusion abnormalities in many fiber tracts, again with the most common abnormality being a reduction in FA.

There are two studies which implement the tractography approach studying children and adolescents with ASD. Sundaram and colleagues (2008) reported on a comparison of 50 children with ASD (4.79 ± 2.43 years) and 16 controls (6.84 ± 3.45 years). Tractography was performed on frontal lobe long- and short-range pathways. The ADC was significantly higher for whole frontal lobe, long- and short-range association fibers in the ASD group. FA was significantly lower in the ASD group for short-range

association fibers in the ASD group. FA was significantly lower in the ASD group for short-range fibers but not for long-range fibers. There was no between-group difference in the number of frontal lobe fibers (short and long); however, the long-range association fibers of frontal lobe were significantly longer in ASD group. Fletcher and colleagues (2010) reported on a comparison of 10 adolescents with autism (14.25 ± 1.92 years) and 10 controls (13.36 ± 1.34 years), performing tractography of

with autism (14.25 ± 1.92 years) and 10 controls (13.36 ± 1.34 years), performing tractography of the arcuate fasciculus (superior longitudinal fasciculus). The results showed an increase in MD in the autism group, due mostly to an increase in the RD. Both MD and FA were less lateralized in the autism group.

The remaining four tractography studies include adults with one study including participants across the entire age range. Catani and colleagues (2008) reported on a comparison of 15 adults with Asperger syndrome (31 ± 9 years) and 16 controls (35 ± 11 years). Tractography was performed on short intracerebellar connections, long-range afferent (i.e., corticopontocerebellar and spinocerebellar tracts) and efferent (i.e., superior cerebellar tracts) connections. The Asperger group had

tracts) and efferent (i.e., superior cerebellar tracts) connections. The Asperger group had significantly lower FA in the short intracerebellar fibers and right superior cerebellar peduncles, but no difference in the afferent tracts. Conturo and colleagues (2008) reported on a comparison of 17 adults with autism (26.46 ± 2.73 years) and 17 controls (26.08 ± 2.69 years), performing tractography of hippocampo-fusiform and amygdalo-fusiform pathways. While these pathways had normal size and shape,

hippocampo-fusiform and amygdalo-fusiform pathways. While these pathways had normal size and shape, the right hippocampo-fusiform had reduced RD compared with controls, opposite to the whole-brain effect of increased RD. In contrast, left hippocampo-fusiform, right arcuate fasciculus, and left arcuate fasciculus had increased RD and increased AD in autism. There was a general loss of lateralization compared with controls. Thomas and colleagues (2011) reported on a comparison of 12 adults with

compared with controls. Thomas and colleagues (2011) reported on a comparison of 12 adults with autism (28.5 ± 9.7 years) and 18 controls (22.4 ± 4.1 years), performing tractography on callosal and visual-association pathways. Compared with the control group, the autism group demonstrated an increase in the volume of the intra-hemispheric fibers, particularly in the left hemisphere, and a reduction in the volume of the forceps minor and the body of the corpus callosum. Finally, Pugliese and

in the volume of the forceps minor and the body of the corpus callosum. Finally, Pugliese and colleagues (2009) compared 24 children, adolescents, and adults with Asperger syndrome (23.3 ± 12.4 years) and 42 controls (25.3 ± 10.3 years), performing tractography on the following limbic pathways: inferior longitudinal fasciculus, inferior frontal occipital fasciculus, uncinate, cingulum, and fornix. There were no significant between-group differences in FA and MD. However, the Asperger group had

There were no significant between-group differences in FA and MD. However, the Asperger group had a significantly higher number of streamlines in the right and left cingulum and in the right and left inferior longitudinal fasciculus. In contrast, the group with Asperger syndrome had a significantly lower number of streamlines in the right uncinate.

Combination DTI While each of the DTI methods described above has limitations when used alone, these can be overcome by using the methods in combination with one another, ideally in a synergistic manner. Kumar and colleagues (2010) reported on a comparison of 32 children with ASD (mean age 5.0 years), 12 developmentally impaired children without ASD (mean age 4.6 years), and 16 controls (mean age 5.5 years). They essentially performed two separate analyses on the same group of participants:

age 5.5 years). They essentially performed two separate analyses on the same group of participants: voxel-wise and tractography study. In the voxel-wise portion of the study, when the ASD and developmentally impaired children were compared with controls, FA was lower in the right uncinate fasciculus, right cingulum, and corpus callosum in both affected groups. There was also reduced FA in right arcuate fasciculus when ASD children were compared with controls and reduced FA in the bilateral

arcuate fasciculus when ASD children were compared with controls and reduced FA in the bilateral inferior fronto-occipital fasciculus when developmentally impaired children were compared with controls. ADC was increased in right arcuate fasciculus in both ASD and developmentally impaired children. In the tractography portion of the study, the ASD group showed shorter length of the left uncinate fasciculus and increased length, volume, and density of the right uncinate fasciculus; increased

fasciculus and increased length, volume, and density of the right uncinate fasciculus; increased length and density of the corpus callosum; and higher density of the left cingulum compared with the control group. Compared with the developmentally impaired group, the ASD group had increased length, volume, and density of the right uncinate fasciculus; higher volume of the left uncinate fasciculus; and increased length of the right arcuate fasciculus and corpus callosum. Jou and colleagues (2011)

and increased length of the right arcuate fasciculus and corpus callosum. Jou and colleagues (2011) reported on a comparison of 10 ASD adolescents (13.06 ± 3.85 years) and 10 controls (13.94 ± 4.23 years). DTI data was analyzed in a synergistic manner by performing a voxel-wise comparison with follow-up tractography to identify underlying affected white matter structures. The regions of lower FA, as confirmed by tractography, involved the inferior longitudinal fasciculus/inferior

of lower FA, as confirmed by tractography, involved the inferior longitudinal fasciculus/inferior fronto-occipital fasciculus, superior longitudinal fasciculus, and corpus callosum/cingulum. Notably, some volumes of interest were adjacent to the fusiform face area, bilaterally, corresponding to involvement of the inferior longitudinal fasciculus. The largest effect sizes were noted for volumes of interest in the right anterior radiation of the corpus callosum/cingulum and the right fusiform

of interest in the right anterior radiation of the corpus callosum/cingulum and the right fusiform face area (inferior longitudinal fasciculus). Finally, Pardini and colleagues (2009) reported on a comparison of 10 adults with autism (19.7 ± 2.83 years) and 10 controls (19.9 ± 2.64 years). They compared FAwithin orbitofrontal cortex volumes defined by tractography in addition to voxel-wise comparison of FA. The low-functioning group with autism demonstrated reduced tract volume and lower mean

of FA. The low-functioning group with autism demonstrated reduced tract volume and lower mean FA values in the left orbitofrontal cortex network compared with controls.

Multimodal MRI While an extremely powerful technology, DTI remains an indirect probe of white matter integrity based on measuring properties of restricted water diffusion. One strategy to augment this data is to use multiple modalities in search for converging evidence supporting a particular neurobiological hypothesis. At the time of this writing, there are a total of five published studies taking a multimodal MRI approach: two combining with structural MRI, two combining with functional MRI,

a multimodal MRI approach: two combining with structural MRI, two combining with functional MRI, and one combining with both structural and functional MRI.

Ke and colleagues (2009) reported on a comparison of 12 children with autism (8.75 ± 2.26 years) and 10 controls (9.40 ± 2.07 years) using voxel-wise comparison of both white matter density (structural MRI) and FA (DTI). In the autism group, there was a decrease of the white matter density in the right frontal lobe, left parietal lobe, and right anterior cingulate. Moreover, there was an increase of the white matter density in the right frontal lobe, left parietal lobe, and left cingulate

of the white matter density in the right frontal lobe, left parietal lobe, and left cingulate gyrus. The autism group also exhibited reductions of FA in the frontal lobe and left temporal lobe. Mengotti and colleagues (2011) reported on a comparison of 20 children with autism (7.00 ± 2.75 years) and 22 controls (7.68 ± 2.03 years) using a combination of voxel-wise comparison in gray/white matter and ROIs (corpus callosum, frontal, temporal, parietal, and occipital lobes) comparing ADC. Compared

ROIs (corpus callosum, frontal, temporal, parietal, and occipital lobes) comparing ADC. Compared to controls, the autism group exhibited increased white matter volumes in the right inferior frontal gyrus, right fusiform gyrus, left precentral and supplementary motor areas, and left hippocampus. Moreover, there were increased gray matter volumes in the inferior temporal gyri bilaterally, right inferior parietal cortex, right superior occipital lobe, and left superior parietal lobule.

right inferior parietal cortex, right superior occipital lobe, and left superior parietal lobule. Additionally, there were decreased gray matter volumes in the right inferior frontal gyrus and left supplementary motor area. Finally, the autism group exhibited abnormally increased ADC in the bilateral frontal cortex and left genu of the corpus callosum.

Using a combination of DTI and functional MRI, Sahyoun and colleagues (2010b) reported on a comparison of 12 adolescents with autism (13.3 ± 2.1 years) and 12 controls (13.3 ± 2.5 years). DTI analysis included a tractography approach in which fiber tracking was aided by functional MRI. FA was captured within these tracts, and mean FA was compared between groups. The functional MRI included response time on pictorial problem-solving task. Autism and control groups showed similar networks:

response time on pictorial problem-solving task. Autism and control groups showed similar networks: linguistic processing activated inferior frontal, superior and middle temporal, ventral visual, and temporoparietal areas, whereas visuospatial processing activated occipital and inferior parietal areas. However, the autism group activated occipitoparietal and ventral temporal areas, whereas controls activated frontal and temporal language regions. The autism group relied more heavily on

controls activated frontal and temporal language regions. The autism group relied more heavily on visuospatial abilities as evidenced by intact connections between the inferior parietal and ventral temporal ROIs. There was impaired activation of frontal language areas in the autism group as evidenced by reduced connectivity of the inferior frontal region to the ventral temporal/middle temporal regions. In another combination DTI and functional MRI study, Thakkar and colleagues (2008) reported

In another combination DTI and functional MRI study, Thakkar and colleagues (2008) reported on a comparison of 12 ASD adults (30 ± 11 years) and 14 controls (27 ± 8 years). DTI analysis included a comparison of FA performed 2 mm below the white/gray matter boundary. Functional MRI included a saccadic paradigm where activation was compared in error versus correct antisaccades, and in both correct and error antisaccades versus fixation, both within and between groups using a random effects model.

error antisaccades versus fixation, both within and between groups using a random effects model. Relative to controls, the ASD group made more antisaccade errors and responded more quickly on correct trials. The ASD group also showed reduced discrimination between error and correct responses in rostral anterior cingulate cortex and reduced FA in white matter underlying anterior cingulate cortex. Finally, in the ASD group, there was increased activation on correct trials and reduced FA in

Finally, in the ASD group, there was increased activation on correct trials and reduced FA in rostral anterior cingulate, both of which were related to repetitive behavior. Using a combination of DTI and structural and functional MRI, Knaus and colleagues (2010) reported on a comparison of 14 ASD adolescents (age range 11–19 years) and 20 controls (age range 11–19 years). Structural MRI analysis included volumetric measurements of language areas. DTI analysis included tractography to delineate

included volumetric measurements of language areas. DTI analysis included tractography to delineate a pathway between temporal and frontal language areas to compare mean FA. Functional MRI was used to divide participants into typical (leftward) and atypical (rightward) language laterality groups. Participants with typical left-lateralized language activation had smaller frontal language region volume and higher FA of the arcuate fasciculus compared to the group with atypical language

region volume and higher FA of the arcuate fasciculus compared to the group with atypical language laterality, across both ASD and controls. The group with typical language asymmetry included the most right-handed controls and fewest left-handers with ASD. Atypical language laterality was more prevalent in the ASD than in controls.

Future Directions Future directions include further refinement of DTI techniques, sophistication in the integration of multiple imaging modalities, and multi-dimensional longitudinal designs. Improvements in technology include higher scan resolution, improving signal-to-noise ratio while maintaining tolerability, and developing novel metrics with higher pathological specificity. Other improvements go beyond the tensor model to examine the directional variation of diffusion in more detail (Lo

go beyond the tensor model to examine the directional variation of diffusion in more detail (Lo et al. 2011). Tractography faces challenges in its ability to resolve multiple fiber populations in a single voxel (e.g., crossing and kissing fibers), growing usage as a more quantitative measure, and lack of standardized technique supported by gold-standard postmortem studies. While several multimodal studies have been published, there could be tighter integration of more modalities (MRI and

studies have been published, there could be tighter integration of more modalities (MRI and beyond) to create novel study designs with higher synergy. The studies reviewed in this chapter are all cross-sectional; thus, longitudinal studies would be optimal to fill in the gaps in current knowledge. In addition to longitudinal imaging across the life span, there should be longitudinal clinical assessments designed to give further meaning to imaging data.

Definition Background. Robotics and computer programming (i.e., coding) are becoming universal in K-12 STEM classrooms. Some educators and experts are calling coding the “new literacy” because every child will need to be literate in coding in order to excel in the twenty-first century (Burke et al. 2016). Participation in robotics and computer coding/programming have shown a wide range of benefits for typically developing children, including increasing student knowledge and participation in

for typically developing children, including increasing student knowledge and participation in the practices of science, engineering, and in problem-solving and team building skills (e.g., Karp and Maloney 2013). Coding (i.e., programming or developing) is the process of instructing a computer, app, phone, or website. Robotics is the field of computer science dedicated to engineering robots. Students might be especially engaged when coding robots because they can use computer programming to

might be especially engaged when coding robots because they can use computer programming to interact with physical robots. To code a robot, students must determine the task they want the robot to complete, design the code to complete the task, and then ensure the robot receives the message in code and completes the desired task. Block-based coding is a type of coding used primarily to teach introductory coding skills to children and includes predesigned sets of codes the child “drags and drops”

coding skills to children and includes predesigned sets of codes the child “drags and drops” from a computer program in order to create a set of instructions. These instructions can be used to run a computer program, control a robot, or manipulate a variety of technologies. One type of block-based coding editor is Ozo-blocky, which allows for students to increase the complexity of their coding skills over time, leading to learning of functions and even text-based coding. Learning these

skills over time, leading to learning of functions and even text-based coding. Learning these block-based coding skills could be a precursor to understanding more advanced skills, such as learning a computer programming language in which text-based coding is used (e.g., JAVA).

Research. Preliminary evidence suggests youth with autism spectrum disorder (ASD) and challenging behavior can learn how to manipulate a robot’s actions after being explicitly taught how to drag and drop code using block-based code (Knight et al. 2019a, b). High school students in the Knight et al. (2019a, b) study also created novel codes and generalized the skills in a self-directed manner by determining the steps they wanted the robot to follow, programming for those steps, and then

by determining the steps they wanted the robot to follow, programming for those steps, and then assessing whether the robots followed the desired sequence (problem-solving if the robots did not). In a similar study, an elementary-aged student with ASD and challenging behavior was explicitly taught how to program robots by creating color sequences of code using paper and markers for the robots to follow (Knight et al. 2019a, b). In this study, the student learned how to calibrate, draw various

follow (Knight et al. 2019a, b). In this study, the student learned how to calibrate, draw various tracks for the robot to follow, and draw a three-color code which programmed the robot to move at nitro speed. This student also generalized the coding skill to novel codes and without prompting, created his own three-dimensional paper robot, complete with numerical formulas the robot used to follow directions. None of the children in either study exhibited challenging behavior at any time

follow directions. None of the children in either study exhibited challenging behavior at any time throughout the study, even when asked questions for which they did not know the answers (e.g., “Code the robot to go fast” during baseline sessions).

Why teach coding of robotics to children with ASD? Including students with ASD in coding and robotics opportunities throughout their K-12 education could lead to future hobbies, career goals, or an interest in pursuing science, technology, engineering, and math (STEM) college courses or majors. Wei et al. (2013) found individuals with ASD less likely than their typically developing peers and peers with other disabilities to enter college; however, individuals with ASD were enrolled in STEM

peers with other disabilities to enter college; however, individuals with ASD were enrolled in STEM majors at a disproportionally higher rate than their peers. Increasingly, the tech sector (e.g., Microsoft) is examining ways to hire the untapped talent pool of employees with ASD, including allowing performance-based interviews rather than traditional face to face ones. Many of these companies report “finding a return on their investment” in terms of hiring employees with ASD (Eng 2018).

report “finding a return on their investment” in terms of hiring employees with ASD (Eng 2018). Longitudinal studies should examine whether students with ASD who are exposed to STEM skills in a similar way to the students in the current study are more likely to be successful in STEM courses, fields, and careers in their futures.

Definition Is autism a distinct and discrete abnormality or is it simply the upper end of some dimension of normal human variability? Such a contrast of categorical and dimensional conceptualizations of mental health has a long history, especially relevant to the discussion about an autism spectrum and “the autisms.” It should be noted that the question conflates at least two issues: one is the contrast between discrete and continuous but the other is the implicit value judgment that is

the contrast between discrete and continuous but the other is the implicit value judgment that is associated with abnormal and normal. The choice has broad consequences for almost all aspects of measurement, explanation, and much of treatment and policy formulation. It is also the basis of much unproductive and con-fused debate.

Essentially, all our clinical measurement of autism starts with sets of categorical symptoms or items, though implicit judgments about dimensional severity may be implicit in the scoring of each item. From these, the international diagnostic systems such as DSM (American Psychiatric Association [APA] 1994) spent decades refining rules for combining these items into categorical diagnostic categories. Screening questionnaires (e.g., Charman et al. 2007) commonly start with a similar item set and

Screening questionnaires (e.g., Charman et al. 2007) commonly start with a similar item set and form total scores that might be considered a dimension. However, the items chosen commonly identify clear abnormality (high threshold or difficult items in the terminol-ogy of psychometrics), generate strongly non-normal item-total distributions when applied to a general population, and, through use of cut points, are intended to increase the proportion or proba-bility of caseness rather than to

of cut points, are intended to increase the proportion or proba-bility of caseness rather than to provide a metric. They are not intended to differentiate among the majority who fall within the normal range. By contrast, questionnaires such as the Autism Quotient (e.g., Wheelright et al. 2010) have items with a range of difficulties and are quite explicitly orientated toward measurement of an autism-related dimension. Questions then arise as to whether the variation that is being differentiated

dimension. Questions then arise as to whether the variation that is being differentiated among the normal and supernormal is the same dimension as the variation being differentiated among the abnormal or whether instead we have a mixture of normal and abnormal populations. Some formal tests have been pro-posed (e.g., Meehl 1995).

The use of a categorical diagnostic tool and a separate dimensional severity has the potential to lead to inconsistencies, a problem that can be resolved if both are derived from the same instru-ment, for example, the Autism Diagnostic Obser-vation Schedule (Gotham et al. 2009). It is however crucial to distinguish a dimensional severity measure that relates to symptom abnor-mality from one that relates to level of impair-ment. While these are correlated, they are not the same.

So should autism be treated as a category or as a high score on a dimension? The arguments of Pickles and Angold (2003) imply that while a dimensional perspective may be more appropriate when considering some aspects of autism, such as when assessing treatment outcome effects, a cate-gorical perspective may be better, even necessary, when considering another, notably treatment eli-gibility. Whether that dimension should be sever-ity or impairment will depend on the circumstance.

Definition Dimethylglycine (DMG) is a natural substance thought to inhibit the buildup of certain amino acids in the body and enhance the immune response in children with ASD. It is a derivative of the amino acid, glycine. It is found in foods, such as beans, grains, and liver.

DMG supplementation has been proposed as a treatment for autism. Anecdotal reports have suggested that use of DMG improved social behavior, frustration tolerance, speech, and reduced aggressive behavior in individuals with autism. However, two randomized clinical trials revealed no significant differences in behavior in individuals with autism after taking DMG (Bolman and Richmond 1999; Kern et al. 2001).

In criminal law, the defense of diminished respon-sibility reduces a person’s liability in connection with the killing of another if it can be argued that they were suffering from an “abnormality of mind (whether arising from a condition of arrested or retarded development of mind or any inherent causes or induced by disease or injury) as sub-stantially impaired his mental responsibility for his acts and omissions in doing or being a party to the killing” (Homicide Act (England & Wales) 1957).

acts and omissions in doing or being a party to the killing” (Homicide Act (England & Wales) 1957). As this definition from English law indi-cates, this defense can only be used in connection with charges of murder and, if successful, reduces a person’s culpability such that they are found guilty of the lesser charge of manslaughter rather than murder. It is particularly useful in this context as there are many “disposal” options available to the court for a charge of manslaughter, whereas

as there are many “disposal” options available to the court for a charge of manslaughter, whereas murder carries the mandatory life sentence.

The defense itself was first recognized under the common law in Scotland and is recognized in sev-eral jurisdictions across the globe, including several states in the USA; certain territories in Australia, Hong Kong, and Singapore; and several Caribbean countries. Moreover, in certain jurisdictions without this defense, there have been a number of cases described where a defense of “lack of intent” has been advanced on the grounds of a mental disorder not amounting to insanity, essentially

has been advanced on the grounds of a mental disorder not amounting to insanity, essentially amounting to the same thing as a diminished defense.

It is important to contrast diminished responsi-bility with defense of insanity, which states that if a person, at the time of the act or omission, was, due to a severe mental disease or defect, unable to appreciate the nature or quality of their act, then they cannot be held criminally responsible for their behavior. As a result, and in contrast to the defense of criminal responsibility, they are deemed to be “not guilty.” Both diminished responsibility and insanity are therefore interpreted

deemed to be “not guilty.” Both diminished responsibility and insanity are therefore interpreted at the level of a person’s mens rea (i.e., their ability to form a “guilty mind”).

The relevance of this defense to individuals with ASDs will therefore only really arise in con-nection with allegations of murder. Such an occur-rence will be extremely uncommon, and at the time of writing, no case law on the use of this defense for an individual with ASDs is available.

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Definition Diphenhydramine (generic name) is also known as Benadryl®. Diphenhydramine acts by blocking the effect of histamine on the H1 receptor site. Diphenhydramine inhibits most responses of smooth muscle to histamine. It acts as a vasocon-strictor by inhibiting the vasodilator effects of histamine. Diphenhydramine is used to provide relief to allergic symptoms caused by histamine release, for sedation, as prevention of motion sickness, as an antitussive, as treatment of

release, for sedation, as prevention of motion sickness, as an antitussive, as treatment of phenothiazine-induced dystonic reactions, as adjunct to epineph-rine in the treatment of anaphylaxis, and topically for relief of pain and itching. Diphenhydramine is often used to control agi-tation or aggression in children; however, it does not have an FDA indication for this use.

• Onset of action: Maximum sedative effect: 1–3 h • Duration: 4–7 h • Distribution: Vd: 3–22 L/kg • Protein binding: 78% • Metabolism: Extensively hepatic n-demethylation via CYP2D6; minor demeth-ylation via CYP1A2, 2C9, and 2C19; smaller degrees in pulmonary and renal systems; sig-nificant first-pass effect

• Bioavailability: Oral: 40–70% • Half-life elimination: 2–10 h; elderly: 13.5 h • Time to peak, serum: 2–4 h • Excretion: Urine (as unchanged drug) Side Effects Since diphenhydramine acts by blocking the effect of histamine on the H1 receptor site, it can cause significant anticholinergic side effects such as ataxia; loss of coordination; decreased mucus production; consequent dry, sore throat; xerostomia or dry mouth with possible accelera-tion of dental caries; cessation of perspiration;

xerostomia or dry mouth with possible accelera-tion of dental caries; cessation of perspiration; consequent decreased epidermal thermal dissipa-tion leading to warm, blotchy, or red skin; increased body temperature; pupil dilation (mydriasis); consequent sensitivity to bright light (photophobia); loss of accommodation (loss of focusing ability, blurred vision (cycloplegia)); double vision (diplopia); increased heart rate (tachycardia); tendency to be easily startled; uri-nary retention;

(diplopia); increased heart rate (tachycardia); tendency to be easily startled; uri-nary retention; diminished bowel movement, sometimes ileus; increased intraocular pressure; and shaking.

In high enough doses, diphenhydramine can cause a cholinergic delirium (children and elderly are more prone), and may include confu-sion, disorientation, agitation, euphoria, or dys-phoria; respiratory depression; memory problems; inability to concentrate; wandering thoughts; inability to sustain a train of thought; incoherent speech; wakeful myoclonic jerking; unusual sensitivity to sudden sounds; illogical thinking; visual disturbances (periodic flashes of light, periodic changes in visual

illogical thinking; visual disturbances (periodic flashes of light, periodic changes in visual field, restricted vision); visual, auditory, or other sen-sory hallucinations (warping or waving of sur-faces and edges, textured surfaces, “dancing” lines, “spiders,” insects); and, rarely, seizures, coma, and death.

Diphenhydramine may cause paradoxical exci-tation in young children. Its chemical name is 2-(Diphenylmethoxy)-N, N-dimethylethylamine hydrochloride, and it has a molecular weight of 291.82. The molecular for-mula is C17H21NO • HCl.

Synonyms Benadryl Definition Diphenhydramine is a histamine H1 receptor inverse agonist/antagonist as well as a potent muscarinic acetylcholine receptor antagonist. Being blood–brain barrier permeable, diphenhy-dramine’s action on CNS H1 receptors results in a drowsy state. While this drowsy state may be beneficial to ASD patients with sleep problems, there is no evidence indicating diphenhydramine effectiveness in treating ASD’s core symptoms. The drug is most commonly used for allergies and

effectiveness in treating ASD’s core symptoms. The drug is most commonly used for allergies and common cold. Side effects may include nausea, vomiting, drowsiness, dizziness, loss of appetite, headache, muscle weakness, and excitement.

**DIR Model (Developmental, Individual Difference, Relationship Based): A Parent-Mediated Mental Health Approach to Autism Spectrum Disorders, The**

Definition The Developmental, Individual Difference, Relationship-Based model of intervention (DIR) provides a developmental framework for interdis-ciplinary assessment and parent-mediated inter-vention for autism spectrum and related disorders. This comprehensive model utilizes affect-based interactions and experiences tailored to individual differences to promote development. “D” refers to developmental capacities for shared attention and regulation, engagement across a wide range of

to developmental capacities for shared attention and regulation, engagement across a wide range of emotions, two-way communica-tion, and complex social problem solving which underlie the development of symbol formation, language, and intelligence. Intervention starts with pleasurable synchronous interactions between children and parents, the heart of rela-tionships, which support progress. “I” refers to individual differences related to sensory reactivity and regulation, visual-spatial and

refers to individual differences related to sensory reactivity and regulation, visual-spatial and auditory/lan-guage processing, and purposeful movement. Challenges in these neurobiological factors can make it difficult to participate in the emotional interactions that enable mastery of the develop-mental capacities (“D”). “R” refers to relation-ships with caregivers that are the vehicle for affect-based developmentally appropriate interac-tions. DIR pioneered parent-mediated interven-tion

affect-based developmentally appropriate interac-tions. DIR pioneered parent-mediated interven-tion because of parents’ ongoing opportunities to support their child’s everyday functioning to carry out emotionally meaningful goals and pro-vides the essential relationship every child needs. Cultural and environmental influences are also considered. By taking all three dimensions of DIR into account, the foundation for functioning, learning, and relating to others in meaningful ways is established.

the foundation for functioning, learning, and relating to others in meaningful ways is established. Current developmental sci-ence’s shift away from behavioral reductionism to a relational developmental perspective highlights DIR’s original dynamic and systems model where its three dimensions mutually influence each other throughout the life span.

DIR is commonly known as Floortime, the heart of DIR’s intervention. Floortime is both a philosophy and specific technique where care-givers follow the child’s natural emotional inter-ests and create states of heightened pleasure in playful interactions tailored to the child’s unique motor and sensory-processing profile to strengthen the connection between sensation, affect, and motor action. Connecting words to underlying affects that give them purpose and meaning leads to the formation of

Connecting words to underlying affects that give them purpose and meaning leads to the formation of symbols, imag-inative play, and reflective conversations. Addi-tionally, semi-structured problem solving and social activities; play dates, language, sensory-motor, and visual-spatial therapies; educational programs; family support; and augmentative and biomedical interventions make DIR a comprehen-sive model. The child’s evolving DIR profile determines the individualized intervention as he

model. The child’s evolving DIR profile determines the individualized intervention as he progresses. While DIR emphasizes early identifi-cation and early intervention, it guides develop-mental intervention at all ages (Greenspan and Wieder 1998, 2006, 2011; Wieder 2011; Wieder and Greenspan 2001). As an infant mental health model, DIR is strength based; focuses on the child’s emotional life and challenges; addresses anxiety, emotional and behavioral regulation, par-ent stress, and depression; and

addresses anxiety, emotional and behavioral regulation, par-ent stress, and depression; and engages in reflec-tive practice.

Historical Background The components of the DIR Model have long theoretical, clinical, and research traditions. Developmental frameworks go as far back as Freud, Erikson, Piaget, Anna Freud, and Mahler and were enhanced by the clinical reports of Spitz, Bowlby, Winnicott, Fraiberg, Lourie, Provence, and others who described the critical impact disrupted and impoverished environments had on early relationships and development. Soon the nuances and bidirectionality of parent infant interaction

relationships and development. Soon the nuances and bidirectionality of parent infant interaction came under scrutiny as Tronick, Feldman, Fonagy, and others studied synchrony, contingency, affect attunement, match-mismatch, and repair. The importance of nurturing respon-sive parents and strong parent-child relationships that could protect the family from the disruptions of stress and harmful life events, as well as social emotional development, shaped the new field of infant mental health.

life events, as well as social emotional development, shaped the new field of infant mental health. Meanwhile, Escalona, Ayres, Brazelton, and others were identifying bio-logical influences in development. This coincided with rejection of psychogenic theory blaming par-ents for their children’s autism implied by Kanner, Asperger, and Bettelheim in prior decades and opened the door to understanding individual dif-ferences (Greenspan et al. 2001; Wieder 2011).

Developmental processes underlie every aspect of experience. Far from automatic, far from milestones, development is a process that captures the essential pathways to functional emo-tional capacities, which, in turn, contribute to mental health and resilience. This chapter will describe how the DIR Model by Greenspan and Wieder integrated IMH into development in a relationship-based intervention model emphasiz-ing therapeutic pathways that facilitate affect sig-naling, shared and joint

model emphasiz-ing therapeutic pathways that facilitate affect sig-naling, shared and joint attention, reciprocal communication, problem solving, and symbolic process. It will illustrate how symbolic expression reflects capacities for the full range of emotions within the reciprocal relationship between the child’s developmental capacities and the caregiv-ing environment.

The initial formulation, the developmental structuralist theory, developed during an NIMH preventive intervention research study of multi-risk families, described the processes that orga-nize experience at successively higher levels and provide the structure for development (Greenspan et al. 1987; Greenspan and Lourie 1981). As more children at risk for disorders in relating and com-municating were identified, this model began to serve children with autism and other special needs providing the

identified, this model began to serve children with autism and other special needs providing the first relationship-based develop-mental approach recognizing individual differ-ences and how emotions impact cognitive and language abilities, as well as social and self-regulation skills, and became known as DIR (Greenspan and Wieder 1998, 2006, 2011).

Rationale or Underlying Theory Autism’s deficits relate to the inability to interact with emotional signals, gestures, and vocaliza-tions, and maintain these interactions with others. DIR hypothesizes these deficits stem from a compromised capacity to connect emotions or intent to motor planning/sequencing, sensations, and later to early forms of symbolic expression of intent or emotions (Greenspan and Shanker 2004; Greenspan and Wieder 1998, 2006). Usually, an infant connects the sensory system

and Shanker 2004; Greenspan and Wieder 1998, 2006). Usually, an infant connects the sensory system to the motor system through affect, e.g., seeing the caregiver’s smiling face or hearing her wooing voice entices the infant to turn and look and listen and smile back. Through many of these interactions, the infant begins to recognize patterns as they share attention, take pleasure in interactions, read each other’s cues, and respond to each other over and over again through gaze, vocalizations,

read each other’s cues, and respond to each other over and over again through gaze, vocalizations, and ges-tures. By the end of the first year, the infant rec-ognizes variations in his caregiver’s affect as well as his own feelings related to love, anger, feeling proud, disapproved of, etc. By the second year, these patterns lead to sense of self as purposeful and differentiated sense of others. By the third year, these interactions enable a child to form and give meaning to symbols leading to

By the third year, these interactions enable a child to form and give meaning to symbols leading to higher levels of thinking. When challenges with sensory-motor, language comprehension, and visual-spatial knowledge derail this process, affect must be brought in to strengthen connections and enable simultaneous looking, listening, and mov-ing while engaging in meaningful problem-solving interactions, through heightened states of pleasure and other affects. Longer chains of co-regulated

through heightened states of pleasure and other affects. Longer chains of co-regulated affective gesturing will enable the child to recognize variations in the caregiver’s gestures, facial expressions, and tone of voice and become aware of his anxiety and repetitive behavior. The relationship becomes the vehicle for affect that transforms labels into meanings leading to symbolic thinking and more complex and abstract reasoning (Greenspan and Shanker 2004; Greenspan and Wieder 1998; Wieder and

complex and abstract reasoning (Greenspan and Shanker 2004; Greenspan and Wieder 1998; Wieder and Greenspan 2003).

DIR theory identifies six fundamental capac-ities that emerge in infancy and expand in dura-tion, range, and stability as the child develops. These capacities are necessary for functioning across the life span and can be observed at any point in time.

1. Regulation and Shared Attention (Between Infant and Caregiver). From birth to 3 months, an infant’s capacity grows for calm, focused interest in the sights and sounds of the outer world while she begins to share her interests with the caregiver.

2. Forming Attachments and Engaging in Rela-tionships. During the next first 4 months, infants and parents become more intimate as they interact with warmth, trust, and intimacy. They each use their senses to enjoy each other through looks, hugs, songs, and dancing together. Over time, the infant will need to remain related and engaged across the full range of emotions, even when disappointed, scared, angry, or stressed.

3. Intentional Two-Way Affective Communica-tion. Between 4 and 10 months, purposeful, continuous flow of interactions with gestures and reciprocating emotions gets underway. The infant begins to act purposefully, more aware of her body and the functions it can perform. As the infant gains motor control over her body and intent, she is better able to communicate her desires. With emerging abil-ities to reach, sit and turn, crawl and creep, and give, take or drop objects, the infant’s aware-ness

to reach, sit and turn, crawl and creep, and give, take or drop objects, the infant’s aware-ness of the interpersonal world develops, as does awareness of her body in space and in relation to others who may be moving.

4. Complex Social Problem Solving. Between 9 and 18 months, an infant has learned the back and forth rhythm of interactive emotional signaling and begins to use this ability to think about and solve problems that are emotionally meaningful to get what he wants, such as pulling mommy to the door to go outside and play. All of the child’s senses work with his motor system as he interacts with others to solve problems. Difficulties arise when he encounters new difficulties to solve as experi-ence

to solve problems. Difficulties arise when he encounters new difficulties to solve as experi-ence expands.

5. Emotional Ideas. Between 18 and 36 months, the toddler begins to represent or symbolize intentions, feelings, and ideas in imaginative play and/or language, using gestures, words, and symbols. The toddler now calls on a toy phone, sets up a picnic or tea party, takes the sick baby to the doctor, or repairs his car before driving. These first ideas come from experiences in real life that are enacted in pre-tend dramas as the child experiments with dif-ferent roles and feelings.

6. Emotional Thinking, Logic, and Sense of Real-ity. At about three, the child begins to combine ideas to tell a story as he develops more logic and understanding of himself and others. His stories use imaginative characters and animal figures that talk and may have magic as he discovers he needs more power to encounter the fears and conflicts in life, but reasoning skills click in to elaborate sequences, and stories become increasingly logical and realistic. Over the next few years, the child’s

and stories become increasingly logical and realistic. Over the next few years, the child’s emotional and mental abilities move toward abstract thinking, and he develops the ability to distinguish reality from fantasy, self from nonself, and one feeling from another and makes distinctions concerning time and space.

Level six later expands to: 7. Multicausal and Comparative Thinking. The child “deepens the plot,” explores multiple motives, gets opinions, and compares and con-trasts ideas. The child can step into “your shoes” and predicts what you will do based on “affect cues” related to deception, fairness, and justice.

8. Relativistic or Gray-Area Thinking. Here, the child differentiates more of his thoughts, rather than thinking only in “black and white” terms. For example, the lion may pay a price for killing the zebra who breaks his leg before being devoured. The child now considers dif-ferent possibilities and contingencies and is aware of different outcomes and of how he would feel under different circumstances.

9. Self-Reflection or Thinking Using an Internal Standard. Now the child has a sense of herself; she can look at and reflect on her performance and feelings. She can question why she is feel-ing a certain way and contrast this with how she usually feels, or she can compare her current efforts with earlier ones. This kind of thinking allows her to make inferences about herself and others and create new choices and ideas.

Each of these capacities can be framed as indicators of emotional development through-out life. For example, engagement builds on shared attention with another and must with-stand negative feelings, as well as love, trust, and security. Gestures, expressed through tone of voice, movement, facial expressions, and body language continue to be the fundamentals of communication giving meaning to words and negotiate acceptance, approval, ambivalence, and rejection. Complex social problem solving

and negotiate acceptance, approval, ambivalence, and rejection. Complex social problem solving relates to perspective taking and reciprocity that underlie cooperation and collaboration. As language and symbolic development emerge, it is possible to pursue the inner expe-rience of children as they use words and play to express emotions, develop and bridge ideas in logical sequences, and develop reality testing. The progressive levels of thinking are a reflec-tion of emotional thinking and the

reality testing. The progressive levels of thinking are a reflec-tion of emotional thinking and the development of self.

Goals and Objectives The goal of the DIR model is to enable children on the autism spectrum to form a sense of themselves as intentional, interactive individuals, who can develop cognitive, language, and social and emo-tional capacities. This calls for the mastery of six functional developmental levels and comprehen-sive interventions that treat problems related to gaps or variability in these capacities.

Specific objectives: • To identify the degree to which each devel-opmental level is mastered fully, partially, or unmastered and how stable or consistent. The critical principle is to engage the child at his or her level and to help the child master that level and subsequent levels. When a child has partial mastery of a higher level, e.g., using ideas, but is not fully engaged or interactive, he still needs work at the earlier levels.

• To identify and treat the bioneurological regu-latory, sensory, and motor-processing chal-lenges that effect developmental processes.
• To identify gaps in daily adaptation and expected competencies in executive functions.
• To identify family needs for counseling, func-tioning, and advocacy. • To organize comprehensive individualized programs that apply principles of affect-based interactions throughout all interventions to support meanings and comprehension.

• To use developmentally appropriate practices which support child initiation, intentionality, communication, and discovery.
• To keep intervention dynamic and flexible, modifying as needed to support rate of progress.

Treatment Participants This model provides a road map for the treatment of ASD and other developmental, learning, and emotional challenges and diagnoses across the life span. This widespread applicability is possible because it is based on a theory that focuses on capacities fundamental to the development of all individuals. It is also a comprehensive model with a range of interventions that can be tailored to specific underlying sensory processing, motor, and learning challenges, as well as

be tailored to specific underlying sensory processing, motor, and learning challenges, as well as family and cultural factors. Since autism is so heterogeneous, DIR can guide each family to identify the most appropriate program for the child and family based on their individual profiles and helps set priorities. This theory of development is espe-cially useful for early identification in infancy when capacities for regulation and shared atten-tion, engagement, and communicative intent begin and

capacities for regulation and shared atten-tion, engagement, and communicative intent begin and red flags become evident. The interven-tion begins as soon as challenges are evident or at risk. Infant siblings of children with autism should be monitored. With older ages (children, adoles-cents, and adults) intervention ensues when gaps in development are identified, rate of progress is less than expected, core capacities need strength-ening, and anxiety, stress, and social emotional difficulties

core capacities need strength-ening, and anxiety, stress, and social emotional difficulties arise. DIR intervention can support other interventions and educational challenges and especially supports families.

Treatment Procedures Appropriate assessment of all functional areas requires multiple sessions with the child and fam-ily. A senior DIR clinician and/or multi-disciplinary team determines which developmental capacities have been mastered fully, partially, or not at all and how individual differences in sensory modulation, processing, and motor planning effect each level and underlie particular symptoms, behaviors, and learning challenges. These sessions begin with parent dis-cussions, two

symptoms, behaviors, and learning challenges. These sessions begin with parent dis-cussions, two 45-min observations of child-caregiver and/or clinician-child interactions, developmental history and review of current func-tioning, family functioning, prior diagnostic and educational assessments, current programs, con-sultation with speech and language, occupational, physical, and arts therapists, educators, developmental-pediatricians, optometrists, and mental health colleagues when indicated.

educators, developmental-pediatricians, optometrists, and mental health colleagues when indicated. Struc-tured tests (ADOS, neuropsychological, educa-tional, speech and language, OT, PT, etc.) are recommended as needed, rather than routine bases, and biomedical evaluation. Intervention planning and priorities are set with the family and team.

DIR is unique in its comprehensiveness, its developmental focus, the role of the family, its emphasis on emotional and symbolic develop-ment, and its long-term developmental perspec-tive. As a dynamic model, it is flexible and changes as the child progresses moving onto typ-ical activities. There is no attempt to fit the child into a program, and the specific interventions and frequency depend on individual needs. While these therapies are common to other treatments, DIR provides the unifying

individual needs. While these therapies are common to other treatments, DIR provides the unifying goals and principles for an integrated approach. The sessions may be indi-vidual and/or group based, in schools or therapy offices, and parents participate (Greenspan and Wieder 2000, 1998, 2006).

DIR interventions include the following: • Floortime starts with 4–6 daily spontaneous unstructured “play” sessions of 20–30 min (15 h weekly) provided by parents and care-givers that focus on obtaining a continuous flow of synchronous interactions as the child climbs the developmental ladder, e.g., 20–50 circles of communication during preschool years. Teachers, therapists, and Floortime players can provide these experiences. Key elements include observe child’s interests, wait for his

players can provide these experiences. Key elements include observe child’s interests, wait for his initiation and response, follow his intentions, and engage in what gives him plea-sure using affect cues to sustain shared and joint attention; expand back and forth interac-tions by helping child do what he intends, becoming playfully obstructive, and increase problem solving in gestures or words to get the child to further elaborate his intent and reci-procity. The parent does not change topics

get the child to further elaborate his intent and reci-procity. The parent does not change topics or direct but works within the child’s interests to deepen engagement and expand ideas at pre-symbolic and symbolic levels where imagina-tive play focuses on emotions and abstract thinking. These Floortime principles also inform all education and therapies so that chil-dren are maximally interested and engaged in learning interactions.

• Semi-structured problem-solving interventions and routines. The child with autism may not benefit just from exposure to experiences and needs mediation and systematic implementa-tion. Natural learning from the environment gets derailed by constricted interests, repetitive behaviors, poor imitation, poor auditory and visual-spatial comprehension, and motor plan-ning difficulties (praxis), as well as hypersen-sitivity and/or under-responsiveness. Opportunities are created daily to get the child

as hypersen-sitivity and/or under-responsiveness. Opportunities are created daily to get the child to tune into his environment and think when his expectations are challenged, and changes poses a problem for him. These situa-tions are always meaningful and relevant to his emotions such as desire for more or less of something; concern something he is missing or broken, or not finding what he wants in usual places; feeling challenged when needing better motor skills to open containers, or unwrap

in usual places; feeling challenged when needing better motor skills to open containers, or unwrap books or toys; and having to pack his backpack, serve as a messenger, follow multi-ple directions, and get ready independently for routines, and other executive function tasks. Reasoning is inserted to comprehend the prob-lem and helps the child feel that the new expec-tations are not arbitrary, with co-regulated interactions to deal with frustration or disap-pointment, as well as excitement and

co-regulated interactions to deal with frustration or disap-pointment, as well as excitement and success. The challenge increases as the child progresses and involves more elaborate sequences of actions and thoughts with the larger goal of helping child develop competencies off of real-life experiences. In the DIR model, these competencies are part of the Foundational Capacities for Development (FCD) (Wieder and Wachs 2012).

• Social Games and Activities. When meaning-ful and fun, typical social activities can be practiced with an adult and then peers, e.g., songs and movement such as ring-around-the-rosy, red light-green light, red rover, relay races, treasure hunts, or tag. Secondary goals are to help the child learn to negotiate, make deals, learn turn taking and chance games, and resolve conflicts. At older later, social thinking and group activities and therapy may be useful.

• Play dates and social activities with peers to form friendships and spontaneous interactions, sharing ideas, and negotiations. Number per week depends on age of the child.

• Sensory Motor/Visual-Spatial Activities for several hours daily. Most children with autism have motor planning, coordination, or execu-tive function challenges and rely on memory to stay oriented in space. Many have reduced muscle tone and movement/discriminative movement difficulties. Ocular motor and other visual-spatial processing challenges con-tribute to attention and learning difficulties as well as daily adaptation. Therefore, intensive daily practice to strengthen these areas is

as well as daily adaptation. Therefore, intensive daily practice to strengthen these areas is ben-eficial. Activities range from specific fun exer-cise routines, involving running, jumping, climbing, chase, and range from solo sports, gymnastic, biking, swimming, or track, to interactive ball sports. These activities support competence and fun and are opportunities for interaction and negotiation.

• Individual and group language, occupational, physical, visual-spatial, and creative art thera-pies are determined by individual needs of the child. DIR therapists maintain a developmental perspective, include parents in the sessions, and guide home activities between sessions.

• Educational programs range from inclusion in regular education and public and private spe-cial education with varying degrees of inclu-sion, hybrid programs of school- and home-based intervention, tutoring programs, etc. These programs vary in the level of struc-ture provided and are selected on the basis of which setting will best insure comprehension, social interaction, and learning.

• Augmentative and assistive technologies as indicated.  • Family counseling to help parents implement interventions, plan transitions and prepare for adulthood, support family functioning, and provide advocacy when needed.
 • Developmental psychotherapy and mental health intervention may be indicated as chil-dren and adolescents get older and are strug-gling with anxiety, depression, mood disorder, etc. Some may also benefit from medications.

• Consideration of stress-related interventions including nutrition and diet, sleep, biomedical interventions, and when indicated, medications addressing regulation and anxiety, possible sei-zures, impulsiveness, and attention disorders.

Efficacy Information DIR and Parent Mediated Intervention (PMI) pro-vide research evidence for autism treatment targeting core deficits by strengthening essential relationships every child needs and demonstrates long-term benefits. Research with at risk infant siblings of children with autism under 1 year of age further highlight the potential value of pro-dromal relationship interventions. Major studies are reviewed here.

The PLAY Project, a DIR-based intervention that found large treatment effects for parent-child interactional behaviors in 2007, was followed by a study of 128 randomized preschool aged children who received 3 h monthly meetings using coaching, modeling, and video feedback for 1 year with a home consultant. Parents also pro-vided 15 h of Floortime weekly and all children received community services. Large treatment effects were reported for parent-child interactional behaviors, improved

services. Large treatment effects were reported for parent-child interactional behaviors, improved diagnostic categories on ADOS, and reduced autism symptomology along with reduced parent stress and depression. No differences were found on IQ or language scores (Solomon et al. 2007, 2014).

Another DIR evidence-based study at York University compared 12-month DIR/Floortime treatment for 51 children ages 30–51 months with community standard and found significant gains in initiation of joint attention, enjoyment, fewer ADOS symptoms, changes in interaction skills, and less parent stress and depression (Casenheiser et al. 2011). A subsequent analysis of communicative language acts in conversations with parents was significant, whereas language tests were not (Casenhiser et al. 2014).

with parents was significant, whereas language tests were not (Casenhiser et al. 2014). Parent stress has been reported by others and this study, as well as the PLAY Project, highlights the impor-tance of relationship-based interventions in reduc-ing stress and depression as parents are appreciated for their central to the intervention process.

The Preschool Autism Communication Trial (PACT) offered PMI 2 h, twice monthly for 6 months, and monthly for the next 6 months to randomized group of 152 children between 2 and 4–11 years. Intervention targeted social interac-tions and communication, was video aided, and provided plans for daily play at home after each session. Significant findings were reported for reduced severity of autism symptoms and increased parental synchronous response to child, child initiations, and shared attention.

and increased parental synchronous response to child, child initiations, and shared attention. Effects on language and adaptive functioning in school were small (Green et al. 2010). Although no further intervention was offered, a rare long-term follow-up study of 80% of the children 6 years later found the PMI group continued to show less severe symptoms, with improved social communication skills and reduced repetitive behavior, but no differences in language or anxi-ety (Pickles et al. 2016).

These researchers also conducted the iBasis (Intervention British Autism Study of Infant Sib-lings), the first pre-emptive parent-mediated inter-vention with 54 infants at familial risk. The 5-month home-based video-aided intervention (9–14 months) reduced the severity of subsequent prodromal autism symptoms over the period to 39-month follow-up, as well as producing posi-tive impact on dyadic parent–infant interactions and child attention and initiation. They focused on interpreting the

parent–infant interactions and child attention and initiation. They focused on interpreting the infant’s behavior, recognizing intentions, and enhancing sensitive responding, emotional attunement, and patterns of verbal and nonverbal interaction (Green et al. 2017). Repli-cation of these studies is underway.

Neuroscientists in the IBIS (Infant Brain Imag-ing Study) Network are using fMRI images from high risk siblings and low risk infants to develop early prediction models, “neural signatures,” for autism. Images found specific brain differences at 6 months that predicted autism at 24 months in group data. In a study of typical and high risk 260 babies, the high risk group showed neural inefficiencies in the right auditory cortex (processes speech sounds) and by 12 month in areas critical for

in the right auditory cortex (processes speech sounds) and by 12 month in areas critical for language, touch, and self-awareness. Early brain and behavior changes in autism can be detected before symptoms appear and likely have downstream cascading effects, producing later manifestations and later brain changes in autism. Lewis reported, “Without pro-cessing efficiently and pruning, the brain just passes on noise.” They found 17% of high risk infants were diagnosed at 2, and 1.3% of the control

passes on noise.” They found 17% of high risk infants were diagnosed at 2, and 1.3% of the control group (Lewis et al. 2017). While these prediction models have potential public health implications, they need to be replicated and are not yet available for clinical application now.

Another IBIS prospective longitudinal inter-vention study of infant siblings used electrophysiological (EEG) and habituation mea-sures to target social attention. Measures of 33 high risk infants were taken at 6, 12, 18 months in a randomized control study. Between 9 and 11 months, the 19 randomized intervention group received Promoting First Relationships, a parent-mediated intervention of 10 weekly ses-sions, and showed improved social attention in reduced habituation times to face versus

weekly ses-sions, and showed improved social attention in reduced habituation times to face versus object stimuli and greater increase in frontal EEG theta power, closer to the normative responses of matched low risk controls. Replication is neces-sary, but results suggest relationship-based inter-vention has the potential to alter the brain systems underpinning social attention and improve out-comes (Jones et al. 2017). On another frontier, Torres et al. (2016) used new mathematical ana-lytics

(Jones et al. 2017). On another frontier, Torres et al. (2016) used new mathematical ana-lytics to profile growth data longitudinally from 36 newborn babies with and without complica-tions over 5 months using sensors that hinted at less overall motion in the infants at risk, and detected very early stunting in the development of voluntary neuromotor control flagging risk of neurodevelopmental derailment and potential of early motor-based intervention in high risk infants for autism. These recent

and potential of early motor-based intervention in high risk infants for autism. These recent findings hold promise for relationship based intervention changing trajecto-ries when identified very early to improve out-comes for children with autism.

Other methods and research also support ele-ments of DIR’s complex model. Responsive parent-child interactions have been found to improve social engagement and communication (Gernsbacher 2006; Gutstein 2005; Mahoney and Perales 2005; Prizant et al. 2003; Schreibman and Koegel 2005; Vismara and Rogers 2009). Studies on joint attention, emotional attunement, and play reported gains in language and symbolic thought (Kasari et al. 2006; Kasari et al. 2008a; Mundy et al. 1990). Following a child’s

symbolic thought (Kasari et al. 2006; Kasari et al. 2008a; Mundy et al. 1990). Following a child’s lead improved communication as well as language development over long-term periods (Schreibman and Koegel 2005; Siller and Sigman 2002). The strength of relationships and attachment is tied to parent’s sensitive responsiveness just as with typical chil-dren (Capps et al. 1994; Oppenheim 2009; Rogers et al. 1993). The Early Start Denver model reported affectively engaging social interactions,

et al. 1993). The Early Start Denver model reported affectively engaging social interactions, improved IQ, language, social interaction, initia-tive, behavior, and adaptive skills and decreased severity of ASD symptoms (Rogers and Dawson 2010). A 10- to 15-year follow-up study of a subset of 16 boys between 12 and 17, who received preschool DIR intervention, showed empathetic, creative, abstract, and reflective ado-lescents (Greenspan and Wieder 2005). There is still no definitive evidence on any

and reflective ado-lescents (Greenspan and Wieder 2005). There is still no definitive evidence on any one method being better than others, but relationships belong to everyone and should be part of all interventions.

Outcome Measurement DIR studies utilize the standard outcome mea-sures in autism research, including the Autism Diagnostic Observation Scale (ADOS), Achenbach Child and Adolescent Behavior Checklists, BASC (Behavior Assessment System for Children), Greenspan Social-Emotional Growth Chart, Mahoney Maternal and Child Behavior Rating Scales, Mullen Scales of Early Learning, MacArthur CDI, Reynell Developmen-tal Language Scales, Vineland-II, Parenting Stress Index, CES-D Depression Scale,

Developmen-tal Language Scales, Vineland-II, Parenting Stress Index, CES-D Depression Scale, Functional Emo-tional Assessment Scale, Functional Emotional Developmental Level rating scales, sensory motor profiles related to individual differences, symbolic play scales, and clinical reports.

Qualifications of Treatment Providers Treatment is provided by multidisciplinary licensed/credentialed professionals who complete a multiyear certificate process to develop compe-tencies within their discipline. They coordinate, consult, and/or oversee intervention teams and supervise paraprofessional Floortime players and assistants who implement specified activities in schools, social activities, and homes. Profes-sionals include clinical and developmental psy-chologists, regular and special

and homes. Profes-sionals include clinical and developmental psy-chologists, regular and special educators, and speech and language, occupational, physical, movement, and creative arts therapists. Senior professionals coordinate teams. Parents work side by side with the therapists, are coached to provide Floortime, implement the home pro-grams, and have free access to the Profectum Parent Toolbox series of training webcasts (PPT 2017). Developmental pediatricians, pediatri-cians, child

Toolbox series of training webcasts (PPT 2017). Developmental pediatricians, pediatri-cians, child psychiatrists, neurologists, nutrition-ists, and other specialists are consulted as needed.

**Direct Instruction** Definition Direct instruction is a general term used to describe the explicit teaching of a skill set and was developed by Siegfried Engelmann, Wesley Becker, and colleagues. It is a teaching model that focuses on systematically planned lessons and clearly defined teaching procedures. It often involves breaking down instructional targets into smaller components and using a scaffolding approach to teach material. Direct instruction emphasizes the explicit teaching of

a scaffolding approach to teach material. Direct instruction emphasizes the explicit teaching of skills and requires that students consistently demonstrate mastery before moving on to new material. Direct instruction requires that students actively participate in learning and necessarily involves meaningful teacher-student interaction.

**Direct Observation** Definition Direct observation, also known as observational study, is a method of collecting evaluative infor-mation in which the evaluator watches the subject in his or her usual environment without altering that environment. Direct observation is used when other data collection procedures, such as surveys, questionnaires, etc., are not effective; when the goal is to evaluate an ongoing behavior process, event, or situation; or when there are physical outcomes that can

an ongoing behavior process, event, or situation; or when there are physical outcomes that can be readily seen.

Direct observation can be overt, when the sub-ject and individuals in the environment know the purpose of the observation, or covert, when the subject and individuals in the environment are unaware of the purpose of the observation. Structured direct observations are most appro-priate when standardized information needs to be gathered, and result in quantitative data. Unstruc-tured direct observation looks at natural occur-rence and provides qualitative data, such as that used when

observation looks at natural occur-rence and provides qualitative data, such as that used when administering the Childhood Autism Rating Scale (CARS), the Checklist for Autism in Toddlers (CHAT), and the American Psychiatric Association’s Diagnostic and Statistical Manual, 4th Edition (DSM-IV).

Data recording for direct observation includes narrative notes, video or photographs, recording checklist (yes/no), observation guidelines (printed forms with space to write notes), and combina-tions of the above. Direct observation provides the highest degree of ecological validity but lowest degree of experimental control. The value of direct observation is directly related to the evalu-ator’s ability to capture detail, determine what is important, and interpret what has been observed.

ability to capture detail, determine what is important, and interpret what has been observed. Because autism is a disorder that is diagnosed and individuals are evaluated through behavioral observation, direct observation is a critical evalu-ative tool that affords an objective perspective of the individual’s profile.

**Direct Observation Scales** Definition Direct observation scales are structured instru-ments used to collect first-hand information regarding observable behaviors. They contrast to scales that provide indirect accounts, such as rating scales, report forms, or interviews with parents, caregivers, or teachers regarding behav-iors of an individual, although both provide important information. Direct observation scales are critical in both diagnosis and intervention with children with autism

Direct observation scales are critical in both diagnosis and intervention with children with autism spectrum disorders. While these scales can vary in format, they share common characteristics, including having a structure as to what is attended to in the obser-vation and what is coded. Thus, they are not simply a description of what an individual is doing. For autism spectrum disorders, the behav-iors central to the diagnosis are most often the target of direct observation scales (e.g., eye

central to the diagnosis are most often the target of direct observation scales (e.g., eye con-tact, social initiations, conversational turn-taking) and behaviors that interfere with func-tioning and are the targets of intervention (e.g., aggression or bolting). Direct observation scales can be more or less structured in how the obser-vation situation is set up and how the data is collected. Some direct observation scales provide a set of semi-structured activities and record and code observed

direct observation scales provide a set of semi-structured activities and record and code observed target behavior within those activities, while others provide a structured means to record and code direct observations in the natural environment. A number of direct observation scales have been developed for diag-nostic purposes including those that provide semi-structured activities in which to record and code observations, such as the widely used Autism Diagnostic Observational Schedule (ADOS;

and code observations, such as the widely used Autism Diagnostic Observational Schedule (ADOS; Lord et al. 2001) and the Autism Obser-vation Scale for Infants (AOSI; Bryson et al. 2000). For assessment of interfering behaviors for the purpose of treatment planning, direct observation scales are often used during a func-tional behavioral assessment (FBA). These direct observations are most often conducted in the natural environment and data is collected with a very systematic methodology.

conducted in the natural environment and data is collected with a very systematic methodology. Different types of data can be collected during an FBA including interval, frequency, duration, latency, and antecedent-behavior-consequence (ABC) data.

**Disability** Synonyms Affliction; Detriment in skill; Exceptionality; Incapacity; Relative weakness in an area of functioning

Definition In common terms, it is the condition of being unable to perform a skill as a consequence of physical or mental incapacity. It may suggest impairments, limitations, or restrictions on performing certain activities. Autism is one cat-egory of disability under special education regu-lations (IDEA 2004). Other categories of disability include intellectual disability, a hear-ing impairment (including deafness), a speech or language impairment, a visual impairment (including blindness), a

(including deafness), a speech or language impairment, a visual impairment (including blindness), a serious emotional distur-bance (referred to in this part as emotional dis-turbance), an orthopedic impairment, traumatic brain injury, other health impairments, a specific learning disability, deaf–blindness, or multiple disabilities. A child with a disability under IDEA (2004) needs special education and related services. Additionally, the law provides for ser-vices for children with a disability

and related services. Additionally, the law provides for ser-vices for children with a disability aged 3–9, to include a child experiencing developmental delays as measured by appropriate diagnostic instruments and procedures, in one or more of the following areas: physical development; cog-nitive development; communication develop-ment; social or emotional development; or adaptive development; and by reason thereof, needs special education and related services. In some situations, children

and by reason thereof, needs special education and related services. In some situations, children with a disability may be said to present a developmental delay if members of the IEP team are not certain that the individual meets the criteria for autism.

**Discontinuous Data Collection** Synonyms Discontinuous measurement; Time sampling procedures Definition Discontinuous data collection methods are those that capture only a sample of the behavior that is observed. During discrete trial teaching, discon-tinuous data collection may be used to record a sample of the instructional trials such as the first trial or first few trials. When data are collected on the first instructional trial, the level of perfor-mance in the absence of immediately

collected on the first instructional trial, the level of perfor-mance in the absence of immediately preceding learned trials or prompts is revealed. Discontinu-ous data collection may also be used to capture a sample of behavior during an observation by dividing the observation into predetermined dura-tion intervals and recording either the occurrence or nonoccurrence of targeted behavior. Examples of this type of measurement include partial inter-val recording, whole interval recording, and

of this type of measurement include partial inter-val recording, whole interval recording, and momentary time sample. While continuous data collection may be more comprehensive, discon-tinuous data collection may be sufficient for decision-making and analysis if the sample repre-sents a valid approximation of the true parameters of the behavior of interest.

**Discourse Management** Synonyms Conversational discourse; Pragmatic language; Topic management; Turn-taking Definition Discourse management refers to the ability to organize topics and turns and to repair any communication breakdowns during conversa-tion. Carrying on a conversation involves the appropriate use and coordination of a variety of skills including: initiating and maintaining topics, using eye contact, taking turns, being polite, and observing and responding appropri-ately to

using eye contact, taking turns, being polite, and observing and responding appropri-ately to nonverbal behaviors. During dis-course, individuals must monitor their own contributions while taking into account the explicit and implicit responses, intentions, and knowledge of their conversational partner (s). The existing literature on language use and conversational skills in individuals with ASD indicates that the ability to contribute new information to topics introduced by others, shift

ASD indicates that the ability to contribute new information to topics introduced by others, shift topics appropriately, provide turns for others within conversation, take turns appro-priately, and provide repairs for conversational breakdowns frequently present challenges to many individuals with ASD.

**Discretionary Trust** Discretionary Trust A discretionary trust is a common method of estate planning whereby the creator of the trust (the settlor) transfers the assets to another (the trustee), who then has a duty to hold and manage the assets for the benefit of a third party (the beneficiary). If the trust is established by a living settlor, rather than through a will, the trust acts as a will substitute and the transferred estate avoids probate and some estate taxes.

The terms of a discretionary trust delegate power to the trustee to decide the “time, purpose and amount of all distributions” to one or more beneficiaries (POMS SI §01120.200.B.10). The trustee may be given complete authority over distributions that the trustee considers advisable. For example, a settlor might delegate absolute discretion upon a trustee in order to protect the long-term interests of a financially irresponsible beneficiary, or to establish a supplemental needs trust for lifetime

of a financially irresponsible beneficiary, or to establish a supplemental needs trust for lifetime support of an orphaned or dis-abled child. The purpose of such trusts may be to protect a spendthrift beneficiary from poor finan-cial decisions; provide funds that “supplement, but not supplant, sources of income including SSI or other government benefits” (POMS SI §01120.200B.13); and shield the trust against invasion by the beneficiary, or the beneficiary’s general creditors. The trustee may only be

against invasion by the beneficiary, or the beneficiary’s general creditors. The trustee may only be com-pelled to distribute money from the trust under very restricted circumstances.

Alternatively, the settlor may limit the trustee’s discretion by directing that distributions be used for specific purposes. Often, such an arrangement is made to provide for the long-term care and support of an incompetent beneficiary. For instance, a trustee’s discretion is limited to distributing money for the “comfortable support, education, health and maintenance” of the benefi-ciary (Leslie and Sterk 2006). Support trusts are often used to provide care for a surviving spouse, or an

and Sterk 2006). Support trusts are often used to provide care for a surviving spouse, or an incompetent or elderly adult.

Depending on the intent and objectives of the trust, creating a discretionary trust is an effective estate planning tool that may extend the life and availability of estate assets, while offering flexi-bility for the trustee to deal with unanticipated events. However, problems may arise such as a trustee’s breach of duty to manage the trust in “good faith,” or “in accordance with its terms and purposes,” or in the “interests of the benefi-ciaries” (Uniform Trust Code §801 et. seq., 2005). This

or in the “interests of the benefi-ciaries” (Uniform Trust Code §801 et. seq., 2005). This may be demonstrated when the trustee abuses the assigned discretionary power, and the beneficiary is not competent to address the breach. Therefore, one must carefully evaluate the goals of the settlor, the competence and trustworthiness of the trustee, and the long-term needs of the beneficiary in order to determine if a discretionary trust is the best estate planning option.

**Disguised Mands** Definition As described in the mand section of this encyclo-pedia, mands (a term derived from command, demand, counterdemand) are typically emitted from one person to another and yield a specific consequence (Skinner 1957, p. 53). For example, if a person said, “I want a cookie” to another person, and it led to the delivery of a cookie, such exchange may be considered a mand. Unlike this example, when a mand does not directly state the specific intended consequence, the mand

Unlike this example, when a mand does not directly state the specific intended consequence, the mand is called a disguised mand. Disguised mands are “responses that are under the control of an establishing operation (e.g., deprivation from cookies) and a discriminative stimulus (e.g., the presence of a listener) but the response does not specify the reinforcing consequence (e.g., access to cookies)” (Najdowski et al. 2017). In short, statements from one person to another, such as “I feel hot” or

(Najdowski et al. 2017). In short, statements from one person to another, such as “I feel hot” or “I’m thirsty,” may be considered disguised mands because they do not directly indicate a specific desired consequence. Because disguised mands are indirect requests, initiating and responding to disguised mands may be chal-lenging for individuals with social communica-tion deficits, especially individuals with autism spectrum disorder (ASD; American Psychiatric Association 2013). Often, individuals

with autism spectrum disorder (ASD; American Psychiatric Association 2013). Often, individuals with ASD have difficulty responding appropriately to sar-casm, metaphors, idioms, and other forms of lan-guage where the intended message is not directly stated (Najdowski et al. 2017).

Because disguised mands are common parlance, responding in a socially acceptable manner is likely to improve social interactions but may require direct interven-tion. At the time of this publication, there are two studies that have conducted behavioral interven-tions to teach individuals with ASD to respond to disguised mands. Najdowski et al. (2017) used a combination of rule setting, role-play, and multi-ple exemplar training to teach three individuals with ASD to respond to disguised mands.

and multi-ple exemplar training to teach three individuals with ASD to respond to disguised mands. First, the participants were provided with a rule that emphasized the importance of responding to peo-ple’s hints by helping them “because doing so makes them feel good and it will help [them] make and keep friends.” Then, the participants completed a role-play activity that involved responding to disguised mands, such as providing a pillow to an investigator that emitted the mand “I’m not very

disguised mands, such as providing a pillow to an investigator that emitted the mand “I’m not very comfortable with my head just lying on the floor.” Last, the participants were provided with various examples and opportunities to respond to disguised mands, such as “I’m hot,” “I’m cold,” “I’m hungry,” etc. A replication and extension of Najdowski et al.’s study was conducted by Erhard (2019) to include the train-ing of nonvocal disguised mands as well. For example, in Erhard’s study, the

to include the train-ing of nonvocal disguised mands as well. For example, in Erhard’s study, the participants were also taught to respond to disguised mands, such as when another person fans themselves with their hand when they are hot, wraps their arms around their body when they are cold, etc. Both studies indicated that the combined use of rule setting, role-play, and multiple exemplar training is an effective teaching strategy for teaching individ-uals with ASD to respond to various

training is an effective teaching strategy for teaching individ-uals with ASD to respond to various modalities of disguised mands. Both studies stressed the importance of future research to evaluate the effect that these teaching strategies have on the participant’s social environment. For instance, future studies could focus on teaching individuals to respond to disguised mands emitted by their peers or their parents.

**Disparities Among African Americans with Autism** Historical Background Autism spectrum disorder (ASD) is an umbrella term that includes a variety of specific neurodeve-lopmental impairments. These include Asperger syndrome, autistic disorder, and more. It is called a “spectrum” disorder because there is no single homogenous set of symptoms that present them-selves across all cases. More accurately, ASD pre-sents a series of symptoms that tend to manifest themselves at often vastly varying

ASD pre-sents a series of symptoms that tend to manifest themselves at often vastly varying degrees from person to person. ASD is prevalent across all races, social classes, and geographic regions. According to the Centers for Disease Control and Prevention (CDC), common symptoms of ASD include problems with social, emotional, and communication behaviors. People with ASD tend to exhibit a strong affinity for routine and a severe distaste for sudden change. They also have trouble expressing their

for routine and a severe distaste for sudden change. They also have trouble expressing their physical and emotional needs by way of conventional vectors of communication.

Throughout history, ASD has been severely mischaracterized and mistreated. Traditional approaches to ASD have simplified and mis-identified the causes of ASD to simply bad par-enting. This view persisted into the 1970s, and the subsequent developed approaches yielded more damage than harm. It was in the 1960s that the neurological nature of ASD was considered by Victor Lotter, and this was ultimately the spark that lit the convergence into a truly scientific approach to ASD (Lotter 1966). Lotter

the spark that lit the convergence into a truly scientific approach to ASD (Lotter 1966). Lotter noticed a similar sociological manifestation between autism and other neurodevelopmental disorders and sub-sequently suggested that they shared a similar etiology. Researchers subsequently began to develop a category of distinct, but related disor-ders which they termed ASD.

Although there is significant research on ASD, understanding of the disorder as it relates to spe-cific racial and ethnic groups is severely limited (Becerra et al. 2014). While there is a general consensus upon the similar prevalence of ASD across all demographic groups, there are other moving parts that affect other facets of ASD man-ifestation. Racial, ethnic, and class disparities in health literacy are well documented by various studies. One such study found that there remains a

health literacy are well documented by various studies. One such study found that there remains a statistically significant disparity in health liter-acy between African Americans and Caucasians, and these disparities were more related to educa-tion and age rather than gender (Shea et al. 2004). These findings are devastating in a multifaceted manner, potentially affecting the outcome and treatment for nearly every prolific and rare medical problem across African American com-munities, as well as

for nearly every prolific and rare medical problem across African American com-munities, as well as lifespans in potentially fatal scenarios. With this in mind, it is no surprise that the rate of disparity in excess death from chronic diseases and other medical conditions between African Americans and Caucasians has increased from the 90s into the new millennium (Airhihenbuwa and Liburd 2006). These dispar-ities are, no doubt, caused by a multitude of fac-tors, including the socioeconomic

These dispar-ities are, no doubt, caused by a multitude of fac-tors, including the socioeconomic marginalization of African American communities and the persis-tence of ghettos across America’s larger cities. Studies have attributed an emotional causative pathway to certain pathophysiologies which play a hand in the rising health disparities (Carlson and Chamberlain 2004). At the most basic level, how-ever, the problem begins with the failure to diag-nose disorders.

Estimates indicate that ASD affects approxi-mately 1 in 500 births every year. Studies have shown that rates of diagnosis for ASD between African American and Caucasian groups are not significantly different. There is a difference, how-ever, in the stages at which ASD is diagnosed. Among African American groups, ASD tends to be diagnosed much later when compared to Cau-casian groups (Gourdine et al. 2011). The impli-cations of this are several, including later treatment, longer and more

et al. 2011). The impli-cations of this are several, including later treatment, longer and more intensive intervention plans, increasing severity of untreated symptoms, and further psychological damage as a result of the patient’s inability to be recognized as in need of extra care. This also poses the risk that the patient may never be diagnosed as autistic due to health illiteracy and lack of proper access to resources, which may result in significant diffi-culty later in life with the lack of

access to resources, which may result in significant diffi-culty later in life with the lack of proper accom-modations in the educational system as well as discrimination in the work place without checks and balances by laws pertaining to disabled peoples.

Failure to diagnose ASD among other disor-ders has been attributed not only to socioeco-nomic factors such as literacy and access, but also to a higher prevalence of affinity towards religiosity and spiritual remedy. Various surveys and studies have indicated that significantly more African Americans identify as religious when compared with Caucasian populations. The ratio of religiosity can often present as 2:1 or more (Taylor et al. 1996). Misattributions of medical disorders to supernatural

present as 2:1 or more (Taylor et al. 1996). Misattributions of medical disorders to supernatural etiologies such as demonic possession are not alien to the world of ASD. Religious scripture and preachers have often attributed mental disorders to demonic pos-session (Greydanus and Toledo-Pereyra 2012). Within African American communities, there are several major groups of churches that propagate supernatural access into the spiritual world as a way towards physical healing (Baer 1981). These

supernatural access into the spiritual world as a way towards physical healing (Baer 1981). These churches belong to a wide array of denominations, including mainstream Baptists, Methodists, and Pentecostal churches among others. It is not sur-prising how influential religion remains as a factor in African Americans’ health care perceptions and habits, given how prominent religion has been in African American history and cultural practice.

Overview of Current Research By the late 1990s, Autism Spectrum Disorder (ASD) was diagnosed, on average, at 6 years of age, according to the findings of Dr. Patricia Howlin (Howlin and Moore 1997). Howlin’s study spanned 1200 families with children having been diagnosed with ASD, or those in the process of receiving a diagnosis. The study did not empha-size ethnic disparities within the sample size, lim-iting the applicability of these findings to minority populations. The average age at which

lim-iting the applicability of these findings to minority populations. The average age at which parents first became concerned with the child’s mental development was 1.69 years of age (sd: 1.43, r: 0-18). Approximately 93% of parents had con-cerns by the time the child reached 3 years of age. A mere 10% were worried by 6 months of age, and in less than 3% of cases did the parents first become concerned after 5 years of age. Fur-ther, the average age at which parents first pro-ceeded with

concerned after 5 years of age. Fur-ther, the average age at which parents first pro-ceeded with professional assistance regarding their children’s development was 2.3 years (sd: 1.94, r: 1 month to 38 years). Despite this, the average time that passed between parental con-cern about child development and the decision to seek professional help was 6–7 months, with over 23% of parents waiting up to 12 months.

Contemporarily, clinicians have successfully been able to detect ASD with reliable accuracy in children aged as young as 2–3 years old. The development of streamlined diagnostic apparatuses such as the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diag-nostic Observation Schedule-Generic (ADOS-G) have made this possible, but despite the technol-ogy, most children are not diagnosed before reaching 4 years of age (Couteur et al. 1989). The diagnosis tends to occur approximately 2

before reaching 4 years of age (Couteur et al. 1989). The diagnosis tends to occur approximately 2 years after professional consultation is sought due to concern regarding the development of a child (Howlin and Moore 1997).

Unfortunately, many of these findings cannot be extended to African American populations, as the majority of recent research surrounding ASD has been almost exclusively limited to Caucasian populations. A study has found that African American patients that fall on the spectrum dis-play more significant impediments in language development but typically yield the same degree of the other main symptoms of ASD (Cuccaro et al. 2007). Further analysis indicates that a higher social class marker is

of ASD (Cuccaro et al. 2007). Further analysis indicates that a higher social class marker is associated with greater chance of ASD (Bhasin and Schendel 2007). As it is understood that ASD occurs at a similar rate across all demographics, this statistic is indicative that a higher social class is more likely to result in a diagnosis of autism simply due to reasons of greater access to healthcare and higher health literacy. A large proportion of stud-ies pertaining to non-Caucasian ASD patients

and higher health literacy. A large proportion of stud-ies pertaining to non-Caucasian ASD patients focus heavily on the country of origin of the patients, which does not provide much in terms of etiology and disparities (Fombonne 2009). The CDC has reported that there is a higher frequency of ASD among Caucasian children as opposed to African American children in the majority of their studies. Additionally, Hispanic individuals with ASD were prevalent at a substantially lower rate when

Additionally, Hispanic individuals with ASD were prevalent at a substantially lower rate when compared to Caucasian sample groups as well. A multisite case-control study of ASD yielded results that further indicate a lower rate of diagnosis among populations with less access to healthcare. Of a randomized population of 2768 children with ASD, approximately 33% of house-holds had incomes below the United States median household income threshold (DiGuiseppi et al. 2016). Statistically, assuming

United States median household income threshold (DiGuiseppi et al. 2016). Statistically, assuming that there is an equal proportion of ASD cases across all demo-graphics, 50% of households should have incomes below the United States median house-hold income.

While it is thought that further studies will uncover factors that increase risk for ASD, the current corpus of research does not present much in that line of thought. Estimations of the fre-quency of ASD have been significantly increasing since the disorder was first characterized (Elsabbagh et al. 2012). Despite this, understand-ing of the etiological nature of ASD and potential factors that may increase the likelihood of its development is significantly limited (Newschaffer et al. 2007). The

increase the likelihood of its development is significantly limited (Newschaffer et al. 2007). The extent of recogni-tion is that there is likely a deeply complex system of interplay between genetic, epigenetic, and environmental risk factors. Although studies are typically of low sample size along with a host of other clinical and infrastructural limitations, links between parental age and frequency of ASD have been suggested (Hultman et al. 2010). Despite these findings, the baseline

and frequency of ASD have been suggested (Hultman et al. 2010). Despite these findings, the baseline operational fulcrum of thought is that ASD tends to occur at similar proportions across all demographics. Until con-clusive studies are produced otherwise, attention must be paid to the disparities in the rate of diag-nosis and onset of treatment between African American and Caucasian populations.

Future Directions While it is recognized that individuals diagnosed with ASD are found in all regions, ethnic groups, cultural backgrounds, and socioeconomic levels, there has been inadequate attention given to ethnic disparities. While it is conceivable that unknown risk factors factor into the etiology of ASD and potentially present differences in the prevalence of the disorder among various populations, there is currently more work to be done prior to fixating research upon this facet of

populations, there is currently more work to be done prior to fixating research upon this facet of study. It is imperative that studies which properly measure the preva-lence of ASD are fortified by a more accurate sampling, and such an accurate sampling is achievable by way of establishing a more reliable infrastructural pathway towards the diagnosis and treatment of ASD among African Americans and other minority populations.

There is no doubt that there exists a variety of confounding factors in the statistics regarding the proportionality of African American individuals with ASD. Many of these factors are cultural, while others are infrastructural. To overcome the infrastructural barriers towards diagnosing Afri-can American individuals with ASD, government policies must pave the road towards more acces-sible pathways to proper treatment. This may be manifested as an increase in resources focused on providing

to proper treatment. This may be manifested as an increase in resources focused on providing pediatric healthcare in low income urban areas and providing social workers trained to identify such disorders at an early age. Not only should these social workers be available to minor-ities living in low-income neighborhoods, but it is important that they also be financially accessible – perhaps by way of government subsidization. Dis-parities in the academic performance of children with ASD exist

of government subsidization. Dis-parities in the academic performance of children with ASD exist across ethnic lines, and this is a reality that may be dealt with by way of policy.

Confounding factors to do with cultural reali-ties among African American populations should be addressed by way of social initiatives towards health literacy. So as to curb perception of the undermining of institutions such as churches that tend to emphasize alternative healing attempts, NGOs, and government initiatives should go about establishing relationships with these insti-tutions to provide adequate health literacy. Health literacy workshops, blood drives, and health screenings are not

adequate health literacy. Health literacy workshops, blood drives, and health screenings are not unheard of in such institutions, and this is a potentially effective way to begin dampening these confounding variables.

More comprehensive study of the sociocultural influences that may delay and even altogether curb the effort to diagnose and identify ASD among African American populations are neces-sary. Studies into the magnitude of effect pre-sented by disparities in health literacy and access to health are an excellent first step towards accomplishing this goal. The critical teleology of these studies, however, should be to generate accurate statistics to form the basis of research into the etiology of ASD.

should be to generate accurate statistics to form the basis of research into the etiology of ASD. Of course, the afore-mentioned sociocultural research would assist in narrowing down proposed genetic, epigenetic, and lifestyle factors in the study of ASD etiology. Diagnostic techniques based upon behavior and cognitive development may only go so far in the study of ASD. In the case of discovering a genetic etiology, ASD could potentially be pinpointed prior to birth, allowing for immediate

a genetic etiology, ASD could potentially be pinpointed prior to birth, allowing for immediate medical attention and in increased threshold for develop-ment. A more holistic fundamentally focused approach will yield the most accurate data.

**Dispute Resolution Procedures** Definition A dispute resolution procedure is a method of resolving a conflict between parties. Historically, dispute resolution was judicial in nature; however, in recent years the number of disputes resulting in trial has decreased significantly due in part to the advent of alternative dispute resolution (ADR) procedures such as arbitration, mediation, and negotiation. Today, most references to a dispute resolution procedure are to these alternatives to

negotiation. Today, most references to a dispute resolution procedure are to these alternatives to litigation (Yarn 1999, p. 154). These methods of dispute resolution along with other types of ADR may be utilized by parties trying to minimize costs and avoid the adversarial nature of litigation.

Types of Alternative Dispute Resolution Procedures Modern alternative dispute resolution procedures were developed primarily as a response to the rising levels of litigation in the United States throughout the twentieth century. In the mid-1970s, Harvard Professor Frank Sander articu-lated his vision of a system where, instead of leading directly to litigation, disputes could be directed to various alternative methods to resolve the dispute without resorting to a trial. He described this

various alternative methods to resolve the dispute without resorting to a trial. He described this multifaceted system of the judiciary working alongside other forms of conflict resolu-tion as the “multidoor” courthouse. (Menkel-Meadow 2005, p. 19). The implementation of such alternatives to litigation has greatly reduced the number of cases going to trial even as the number of complaints filed in courthouses has greatly increased (Stipnowich 2004, p. 844).

Arbitration Arbitration is a dispute resolution process in which the disputing parties present their cases to a third party intermediary who makes what is usually a binding decision for the parties. Arbitra-tion is generally not as formal as in-court adjudi-cation, and the procedural rules can be structured to meet the necessities of the particular situation. As in court-based adjudication, the outcome of an arbitration proceeding will typically result in a clear winner and loser. Although the

of an arbitration proceeding will typically result in a clear winner and loser. Although the arbitrator may recommend a solution that clearly benefits both parties, arbitrators are not expected to develop ideas for meeting the interests of both sides or to help the parties see areas of agreement and reconciliation.

Mediation Mediation is a process in which the parties attempt to resolve a conflict with the assistance of a neutral third party (mediator) (Yarn 1999, p. 272). Medi-ation is similar to negotiation in that the parties to the dispute are in control. However, to assist the process of negotiation, the mediator is present to help reach a mutually agreeable solution to their differences. Although ultimate control and decision-making authority remain with the parties, the mediator has significant

ultimate control and decision-making authority remain with the parties, the mediator has significant power throughout the process to direct the negotiations, identify areas of agreement, and encourage the parties to accept concessions (Goldberg et al. 2007, p. 107).

Negotiation Negotiation is a process where the parties, with the aid of a mediator, attempt to come to a mutu-ally acceptable agreement about issues on which they disagree (Nieuwmeijer 1988, p. 9). The parties use bargaining and open communication to reach a consensus over their outstanding issues. Negotiation works best in situations where all parties involved in the process have a mutual interest in resolving their dispute and are willing to each make concessions in order to reach an

interest in resolving their dispute and are willing to each make concessions in order to reach an acceptable resolution.

**Distributed Practice** Definition Distributed practice is a technique commonly used with students who are learning material or studying for a test. It involves the student creating a schedule of study sessions that are short in duration. Distributed practice can be contrasted to massed practice or cramming, where the stu-dent spends fewer studying sessions but for longer periods of time. This technique has proven to be beneficial for maintaining newly learned skills. Distributed practice aids

has proven to be beneficial for maintaining newly learned skills. Distributed practice aids students in prioritizing learning material.

**Dizygotic (DZ) Twins** Synonyms Fraternal twins Definition Twins are two individuals who are the result of the same pregnancy. Dizygotic twins are nonidentical or fraternal twins. This is in contrast to identical or monozygotic twins. Unlike the case in monozy-gotic twins, the genetic information or deoxyribonucleic acid (DNA) carried by each of the individual twins in a pair of dizygotic twins is different. This genetic information in the form of DNA is the material inherited from each of

is different. This genetic information in the form of DNA is the material inherited from each of the parents that contains all the instructions for the creation and subsequent operation of an individ-ual. Errors in this genetic information can lead directly to disease or make individuals more sus-ceptible to disease.

In singleton pregnancies, a sperm from the father fuses with an egg from the mother, and together, they form a single cell called a zygote, the earliest stage of an embryo. In the case of dizygotic twins, two separate eggs in the mother are released at one time. Each of these is then fertilized by a separate sperm from the father and forms a distinct zygote and embryo. Since each sperm and egg carry distinct genetic mate-rial, each of the two embryos will, thus, carry distinct genetic

egg carry distinct genetic mate-rial, each of the two embryos will, thus, carry distinct genetic material. On average, dizygotic twins’ genetic material is only about 50% iden-tical, as compared to 100% for monozygotic twins. Since each dizygotic twin carries distinct genetic material, his or her physical appearance will be distinct. Dizygotic twins may be of the same sex. However, they might also be of dif-ferent sexes.

Monozygotic twins, in contrast, form as fol-lows. A sperm from the father fuses with an egg from the mother and initially forms a single zygote. Further cell divisions occur during embryonic development. At an early point in this development, the embryo in the case of monozygotic twins splits into two separate embryos, the cells of each having originated from the initial zygote. Each of these embryos goes on to develop into a separate and complete individual. Since each originated from the

embryos goes on to develop into a separate and complete individual. Since each originated from the same initial cell, each individual is identical in his or her genetic composition. Barring rare occur-rences, since monozygotic twins share the same genetic mate-rial, their physical appearance will be identical, and they will be of the same sex.

Dizygotic twinning is more common than monozygotic twinning. Dizygotic twins comprise approximately two thirds of all twins. Monozy-gotic twins comprise one third. While the rate of monozygotic twinning in pregnancies that are unassisted by fertility treatments is relatively sta-ble across world populations at a rate of approxi-mately 4 in every 1,000 live births, there is evidence that the rate of dizygotic twinning in the absence of fertility treatments varies from population to population.

of dizygotic twinning in the absence of fertility treatments varies from population to population. Studies estimate that dizygotic twinning rates are the lowest in East Asian countries fewer than 8 per 1,000 live births. Dizygotic twinning rates are intermediate in Europe, the United States, and India with a rate of approximately 9–16 per 1,000 births. They are highest in some African countries where they can be 18 or greater per 1,000 births.

The rate of both monozygotic and dizygotic twins has increased worldwide since the 1970s. It is thought that the majority of the increase has resulted from the increase in dizygotic twins born as a result of fertility treatments. Twin pregnancies of either type increase pregnancy risk and espe-cially the risk of preterm delivery and low birth weight. Approximately 51% of twins are born preterm compared to 9.4% of singletons.

**Domenic Cicchetti** Biography Dr. Domenic Vincent Cicchetti, PhD (1937–2019), was a biostatistician most notably known for the development of the Vineland Adap-tive Behavior Scales (VABS) together with his late wife Sara Sparrow, a renowned clinical psy-chologist at the Yale Child Study Center.

Dr. Cicchetti obtained his BA, MA, and PhD between 1955 and 1965 in social psychology and biostatistics at the University of Connecticut. He later obtained positions as a Senior Research Sci-entist at the Yale School of Medicine in the Child Study Center and Department of Psychiatry and School of Epidemiology and Public Health. He was an adjunct professor in the Department of Psychology at the University of Windsor in Ontario, Canada, and served as a Visiting Profes-sor in the Division of

University of Windsor in Ontario, Canada, and served as a Visiting Profes-sor in the Division of Neuroscience & Psycholog-ical Medicine, Department of Public Mental Health, Imperial College of Science, Technology, and Medicine, St. Mary’s Campus, London, England (Øien et al. 2019).

As mentioned, Dr. Cicchetti was most notably known for his work together with his wife Sara Sparrow in the development of the VABS and its later editions (Sparrow et al. 2005). But in addi-tion to the development of the Vineland, Dr. Cicchetti authored or co-authored over 200 research publications in behavioral and bio-medical research, computer science, and biostatis-tics that have been widely cited and been essential to the field of developmental psychology and dis-abilities. The Vineland

cited and been essential to the field of developmental psychology and dis-abilities. The Vineland would become the most widely used adaptive behavior assessment instru-ment in the world. For the development and pub-lication of the Vineland, Dr. Cicchetti received the first Connecticut Psychological Association’s Award for Distinguished Effort by a Connecticut Psychologist in 1984 together with his wife Sara Sparrow. Dom was a fellow in Division 5 of the American Statistical Association. Dr.

his wife Sara Sparrow. Dom was a fellow in Division 5 of the American Statistical Association. Dr. Cicchetti was widely known for his development of methods to assess the psychometric properties and work on statistical methodologies in regard to validity and reliability. Dr. Cicchetti has, per May 2020, still scientific contributions in the peer review process.

To summarize, Dr. Domenic Vincent Cicchetti was a prolific scientist in the field of autism and related disabilities, developing instruments and methods that ultimately have led to the fact that an enormous amount of individuals globally have received services for their disability. Dr. Cicchetti also contributed massively to the understanding of statistical versus clinical meaningful results (Nordahl-hansen et al. 2018). Dr. Cicchetti deceased on June 30, 2019.

**Dominance, Cerebral** Synonyms Hemispheric dominance; Hemispheric lateraliza-tion; Hemispheric specialization Definition Cerebral dominance refers to the dominance of one cerebral hemisphere (commonly referred to as the left or right side of the brain) over the other in the control of particular cerebral functions. After decades of study in the fields of behavioral neurology, systems neuroscience, neuroimaging, and neuropsychology, it is clear that each hemi-sphere of the brain is dominant

neuroimaging, and neuropsychology, it is clear that each hemi-sphere of the brain is dominant for specific behav-ioral and cognitive functions. For example, in most right-handed individuals, portions of the right hemisphere temporal lobe are specialized for processing faces, and similar regions of the left hemisphere temporal lobe are specialized for pro-cessing letters. Similarly, in approximately 95% of right-handers and 65% of left-handers, the left side of the brain is dominant for language.

**Donepezil: Definition** Synonyms Aricept; DONEP Definition Donepezil is a central nervous system selective, reversible acetylcholinesterase inhibitor. Acetyl-cholinesterase is an enzyme that degrades acetyl-choline (ACh), a neurotransmitter involved in the pathogenesis of autism-related behavioral deficits such as inattention, decreased cognitive flexibility, lack of social and communication abilities, and increased stereotypical behaviors. Thus, donepezil serves to increase levels and action

and increased stereotypical behaviors. Thus, donepezil serves to increase levels and action duration of ACh in the hopes of reversing abnor-mal phenotypes caused by deficits in ACh pro-duction and/or receptor function. Currently, donepezil is most widely used in the treatment of Alzheimer’s disease. Its effectiveness has also been demonstrated in vascular and Parkinson’s-associated dementia. In ASD, donepezil has dem-onstrated improvements mainly in expressive lan-guage but also in terms of

ASD, donepezil has dem-onstrated improvements mainly in expressive lan-guage but also in terms of general behavior, i.e., irritability, hyperactivity, eye contact, and inap-propriate speech. Evidence also suggests donepezil’s potential use in improving REM sleep duration in ASD patients. However, with all these observations further, substantial, larger-scale validation is required.

**Dopamine** Definition Dopamine is a neurotransmitter that is impli-cated in the pathophysiology of many psychiat-ric and neurologic disorders. Its most notable psychiatric role is in the pathophysiology of psychosis and schizophrenia, particularly the presence of hallucinations and delusions. How-ever, among a complicated network of neural pathways, dopamine is also believed to influ-ence mood states, anxiety, cognition, and the presence of repetitive symptoms experienced in conditions like

states, anxiety, cognition, and the presence of repetitive symptoms experienced in conditions like autism spectrum disorders (ASD), Tourette’s disorder, and obsessive-compulsive disorder. For these reasons, dopa-mine is the target of research attempting to uncover etiologies and treatments for such dis-eases. Understanding dopamine’s relationship to ASD may offer much insight into the pathophys-iology of its symptoms.

Dopamine is synthesized in specialized neu-rons using the amino acid precursor tyrosine (Stahl 2008). Tyrosine is first pumped from the extracellular space into dopaminergic neurons by a tyrosine transporter. Within the neuron, tyrosine then passes through the rate-limiting enzyme tyrosine hydroxylase, followed by the enzyme dopa decarboxylase, to become dopa-mine. (Dopamine can also be converted to the neurotransmitter norepinephrine via the enzyme dopamine beta-hydroxylase.) Dopamine is

to the neurotransmitter norepinephrine via the enzyme dopamine beta-hydroxylase.) Dopamine is packaged into vesicles by a vesicular mono-amine transporter (VMAT2) for storage until later use. When a neuron receives the appropriate signal, dopamine is released from synaptic vesicles to travel across the cleft between the presynaptic and postsynaptic axon terminals. Once in the cleft, dopamine is free to attach to dopamine receptors on the postsynaptic axon terminal. It can also be taken up by

free to attach to dopamine receptors on the postsynaptic axon terminal. It can also be taken up by dopa-mine transporters in the presynaptic axon termi-nal to be repackaged for later use or degraded. One of the most notable receptors is the dopamine-2 (D2) receptor, which is located on postsynaptic axon terminals, presynaptic axon terminals, and somatodendritic areas. When dopamine attaches to D2 receptors on the pre-synaptic axon terminal or somatodendritic areas, D2 receptors provide negative

receptors on the pre-synaptic axon terminal or somatodendritic areas, D2 receptors provide negative feedback that slows or further prevents the release of dopa-mine from the presynaptic terminal. Excess dopamine is degraded within the neuron by the enzymes monoamine oxidase (MAO)-A or MAO-B and outside the neuron by the enzyme catechol-O-methyltransferase (COMT). In some areas in the brain, such as the frontal cortex, there are fewer dopamine transporters to take up excess dopamine remaining in

the frontal cortex, there are fewer dopamine transporters to take up excess dopamine remaining in the cleft, so these alternative routes of degradation function to regulate dopamine concentration.

There are five key dopamine pathways in the brain. The first is the mesolimbic pathway, which projects from the dopaminergic cell bodies of the ventral tegmental area of the brainstem to the nucleus accumbens in the ventral striatum. Increased dopamine activity in this pathway is thought to generate psychosis, also known as the “positive symptoms” of schizophrenia, which include hallucinations and delusions. Stimulant drugs, like amphetamine and cocaine, produce increased dopaminergic activity

delusions. Stimulant drugs, like amphetamine and cocaine, produce increased dopaminergic activity and subsequent psychotic symptoms, whereas first- and second-generation antipsychotic medications, which antagonize dopamine in this pathway, cause reduced psychotic symptoms. The mesolimbic pathway is also known to regulate emotions, moti-vation, pleasure, and reward. Dysfunction in this area may result in symptoms such as avolition and anhedonia, accounting for some of the “negative symptoms” of

in symptoms such as avolition and anhedonia, accounting for some of the “negative symptoms” of schizophrenia. The second path-way is the mesocortical pathway, which projects from the dopaminergic cell bodies of the ventral tegmental area to the prefrontal cortex. Branches from this pathway are believed to regulate cog-nition and executive function, as well as emotion and affect. Unlike the mesolimbic pathway, where an excess of dopamine is hypothesized to produce symptoms of psychosis, a deficit

pathway, where an excess of dopamine is hypothesized to produce symptoms of psychosis, a deficit of dopamine in the mesocortical pathway is thought to cause more negative symptoms observed in schizophrenia, such as flat affect, reduced cognition, and impaired executive func-tion. The model of increased or decreased dopa-minergic activity in different pathways is hypothetical and is likely an oversimplification of a more complex system yet to be understood. The third pathway is the nigrostriatal

of a more complex system yet to be understood. The third pathway is the nigrostriatal pathway, which projects from the dopaminergic cell bod-ies in the brainstem substantia nigra to the basal ganglia or striatum. This area regulates motor movements and is part of the extrapyramidal nervous system. Hypoactivity of dopamine in this pathway produces parkinsonian symptoms of rigidity, akinesia or bradykinesia, and tremor. Hypoactivity in the basal ganglia specifically can result in dystonia or

bradykinesia, and tremor. Hypoactivity in the basal ganglia specifically can result in dystonia or akathisia. Hyperactivity of dopamine in this pathway results in hyperki-netic movements, such as tics, chorea, and dys-kinesia. Longer term blockade of the D2 receptors via antipsychotics can produce a hyperkinetic disorder known as tardive dyskine-sia. The fourth pathway is the tuberoinfundibular pathway, which projects from the hypothalamus to the anterior pituitary. Dopamine typically inhibits

which projects from the hypothalamus to the anterior pituitary. Dopamine typically inhibits prolactin, a hormone that results in lac-tation. When dopaminergic activity is blocked in this pathway, prolactin levels rise as it is no longer inhibited. Elevated prolactin can cause galactorrhea (breast secretions), amenorrhea (loss of ovulation and menstruation), and possi-bly sexual side effects. This can occur with the use of antipsychotic medication, which blocks D2 receptors. The fifth pathway is

can occur with the use of antipsychotic medication, which blocks D2 receptors. The fifth pathway is the lesser-known thalamic dopamine pathway, which innervates the thalamus. It is thought to originate in multiple sites, including the periaqueductal gray matter, ventral mesencephalon, hypotha-lamic nuclei, and lateral parabrachial nucleus. The function of this pathway may involve regu-lation of sleep and arousal.

Historical Background In the late 1950s, a Swedish pharmacologist named Arvid Carlsson was the first person to discover dopamine as a distinct neurotransmit-ter, and in the year 2000, he won the shared Nobel Prize in Physiology and Medicine for this very significant contribution. As outlined in Abbott’s article in Nature (2007), this monu-mental discovery occurred while experimenting with reserpine, the first antipsychotic to be used in the treatment of schizophrenia. Treatment with reserpine was

the first antipsychotic to be used in the treatment of schizophrenia. Treatment with reserpine was observed to cause a catatonic state in experimental rabbits, but the mechanism by which this happened was unknown. Using a spectrophotofluorimeter, a machine used to measure the amount of neurotransmitter synthe-sized from fluorescently tagged precursors, Dr. Carlsson determined that reserpine somehow drained stores of brain neurotransmitters. Because the known neurotransmitters serotonin and

drained stores of brain neurotransmitters. Because the known neurotransmitters serotonin and norepinephrine were not able to cross the blood-brain barrier, Dr. Carlsson hypothesized that their precursors could be injected and cross over the blood-brain barrier to be converted to the needed neurotransmitters, hopefully restor-ing movement. He extracted serotonin and nor-epinephrine precursors, one of which was l-dopa (levodopa), and injected them into the catatonic rabbits. l-dopa restored

one of which was l-dopa (levodopa), and injected them into the catatonic rabbits. l-dopa restored movement in the ani-mals, and Dr. Carlsson determined dopamine to be a separate neurotransmitter while examining the rabbits’ postmortem brains.

With the help of his graduate students, Dr. Carlsson went on to discover dopamine con-centrated in areas of the brain associated with movement, like the basal ganglia. Given the sim-ilarities between reserpine’s side effects and Parkinson’s disease, he hypothesized that the dis-ease must be caused by a deficiency of dopamine. He brought these ideas to various symposia but received a mixed reception; the favored thinking at that time was that nerve conduction in the brain occurred via electrical

the favored thinking at that time was that nerve conduction in the brain occurred via electrical impulses, with little emphasis on chemical transmission. Slowly, others began uncovering similar results, publish-ing studies showing an absence of dopamine in the basal ganglia in patients with Parkinson’s disease (Ehringer and Hornykiewicz 1960) and that healthy basal ganglia neurons contain high levels of dopamine (Birkmayer and Hornykiewicz 1961; Dahlstrom and Fuxe 1964). The drug is not without

of dopamine (Birkmayer and Hornykiewicz 1961; Dahlstrom and Fuxe 1964). The drug is not without imperfection, and unwanted side effects such as nausea and emesis can occur. At times, the drug can lose its therapeutic effect in some patients. Nonetheless, l-dopa continues to be the first-line treatment for Parkinson’s disease. It also likely garnered increased public awareness after being featured in the 1973 book Awakenings by British neurologist Oliver Sacks. This memoir recounts Dr. Sacks’ use

the 1973 book Awakenings by British neurologist Oliver Sacks. This memoir recounts Dr. Sacks’ use of l-dopa in 1969 to treat patients with catatonia who survived the 1917–1928 outbreak of encephalitis lethargica, otherwise known as sleeping sickness. The book was transformed into a 1990 film with the same name starring American actors Robin Williams and Robert De Niro. In 1961, l-dopa was injected into the first Parkinson’s patients with dramatic effect, providing relief for their rigidity and

into the first Parkinson’s patients with dramatic effect, providing relief for their rigidity and immobility.

Not long after the discovery of dopamine’s relationship to Parkinson’s disease, neurologists observed that treatment with l-dopa resulted in psychosis, leading to the discovery that the path-ophysiology of schizophrenia may be related to dopamine. The observation that antipsychotic drugs caused movement disorders similar to that observed in Parkinson’s disease leads Dr. Carlsson to reason that antipsychotics blocked dopamine receptors, resulting in a feedback mech-anism by which neurons

that antipsychotics blocked dopamine receptors, resulting in a feedback mech-anism by which neurons released more compen-satory dopamine. These conclusions have led Dr. Carlsson to become a pivotal figure in the discovery of dopamine as a distinct neurotrans-mitter, as well as someone who uncovered funda-mental mechanisms in neurotransmission that continue to be employed today.

With time, neural pathways controlling dopa-mine were thought to influence motivation and reward, exemplified by the tendency of patients treated with l-dopa to gamble excessively. Research into addiction and drugs of abuse has also implicated brain regions and neural pathways primarily governed by dopamine. Dopamine’s widespread effect in the brain has led autism researchers to investigate it in the pathophys-iology of ASD. The relationship between dopamine and ASD is explored in the “Current

the pathophys-iology of ASD. The relationship between dopamine and ASD is explored in the “Current Knowledge” section.

Current Knowledge A growing body of experimental research is consistent with the notion that non-autistic people perceive autistic people differently and are prone to misperceiving autistic people.

Studies of Mindreading Several studies have investigated whether non-autistic people find facial expressions of autistic people more difficult to read than those of non-autistic people. The majority of these studies asked groups of autistic and non-autistic participants to pose a series of facial expressions of emotion. Photos of these expressions were then shown to a separate group of raters who were blind to the diagnostic status of the participants and were asked to judge the emotion. Some

were blind to the diagnostic status of the participants and were asked to judge the emotion. Some studies have found the expressions of autistic participants were recognized more poorly than those posed by non-autistic comparison partici-pants (Macdonald et al. 1989; Brewer et al. 2016), although others have found little difference (Volker et al. 2009).

Some studies have attempted to capture emotional expressions in more naturalistic ways, closer to the circumstances under which they may be observed in everyday life. Grossman et al. (2013) used a story retelling task and found that non-autistic adults were equally able to use facial expressions to identify the emotional content of a story told by autistic and non-autistic participants. Faso et al. (2015) elicited emotions in autistic and non-autistic participants by narrating

Faso et al. (2015) elicited emotions in autistic and non-autistic participants by narrating autobio-graphical memories to them, finding that the facial expressions of autistic participants were recognized just as accurately as those of non-autistic participants, and in fact, anger was recognized more accurately for autistic participants. Non-autistic people may also have difficulty interpreting other aspects of autistic people’s behavior. Sheppard et al. (2016) investigated non-autistic

other aspects of autistic people’s behavior. Sheppard et al. (2016) investigated non-autistic participants’ ability to interpret the behavioral reactions of autistic people in naturalistic social interactions. Autistic and non-autistic participants were covertly filmed reacting to a seemingly incidental but actually scripted aspect of the researcher’s behavior. While briefing the participant, she either told them a joke, paid them some compliments, told them about the difficult day she was having,

told them a joke, paid them some compliments, told them about the difficult day she was having, or kept them waiting while doing irrelevant activities. Non-autistic participants who viewed the recorded videos were less able to guess which event the video participant had experienced for autistic than non-autistic participants, apart from for reactions to the joke. Edey et al. (2016) asked autistic and non-autistic participants to manipulate two triangles to create animations depicting mental

and non-autistic participants to manipulate two triangles to create animations depicting mental state interactions such as “coaxing” or “mocking.” Non-autistic observers who viewed the anima-tions were better at identifying the mental state depicted for animations created by other non-autistic participants than autistic participants. In summary, research in this area suggests that while non-autistic people may sometimes be able to identify facial expressions of autistic people, they have

people may sometimes be able to identify facial expressions of autistic people, they have difficulty making sense of autistic peo-ple’s behavior in context which might negatively impact on social interactions between autistic and non-autistic people.

Studies of Forming First Impressions Research has also asked a more general question of how autistic people are perceived by non-autistic others. If autistic people are perceived less favorably, then this could result in avoidance and social exclusion, contributing to the social difficulties they experience. Stagg et al. (2014) found that non-autistic adults rated autistic children as less expressive and less attractive than the non-autistic children based on brief videos of them. Meanwhile,

and less attractive than the non-autistic children based on brief videos of them. Meanwhile, children rated them lower on a variety of evaluative dimensions. In a study using a much larger sample of adult participants, Sasson et al. (2017) carried out three studies in which they showed that non-autistic adults rated autistic adults and children less favorably than non-autistic adults and children on a wide variety of evaluative dimensions, as well as indicating reduced intentions to engage with

on a wide variety of evaluative dimensions, as well as indicating reduced intentions to engage with them.

Further research by Sasson and Morrison (2017) examined the impact of providing diagnos-tic labelling information on the impressions formed. They compared non-autistic participants’ judgments of video participants displayed with either no label, or the correct diagnostic label, or the alternative label (e.g., labelling the autistic person as having no diagnosis). Autistic and non-autistic participants were rated more posi-tively when labelled as autistic than when no label or the alternative

were rated more posi-tively when labelled as autistic than when no label or the alternative label was provided, although this did not completely eradicate the tendency to form more negative impressions of the autistic participants. Moreover, raters with higher levels of autism knowledge gave more favorable ratings to correctly labelled autistic par-ticipants. Taken together, these results suggest that diagnostic disclosure might reduce negative first impressions of autistic people, especially

that diagnostic disclosure might reduce negative first impressions of autistic people, especially for people with greater knowledge about autism.

Studies of Metaperception Some researchers have combined elements of mindreading and impression formation by examining metaperception, which is the ability to form an impression of what others think about us. Sasson et al. (2018) investigated meta-perception using the same videos from Sasson et al. (2017) and Sasson and Morrison (2017b). Video participants were asked to estimate how they thought others would perceive them on a wide range of personality traits, and then observers judged them on

others would perceive them on a wide range of personality traits, and then observers judged them on the same traits after viewing their video. They found that autistic participants were less accurate than non-autistic participants in judging how they would be perceived as others, because they overestimated how positively they would be perceived.

While Sasson et al. (2018) study asked partic-ipants about how they come across to others in general, Usher et al. (2018) studied impressions formed by dyads of adolescents where one member of the dyad was autistic and one was not, who engaged in a 5-min conversation. Autistic participants were found to be more accurate in judging whether the non-autistic partner liked them than non-autistic participants were. This is consistent with non-autistic people having difficulty interpreting autistic

were. This is consistent with non-autistic people having difficulty interpreting autistic people and suggests that autistic people may be adept in using social feedback from a specific person to gauge how they are perceived by that particular individual.

Metaperception has also been investigated between dyads of autistic and non-autistic peo-ple who know each other well. Heasman and Gillespie (2018) used the Interpersonal Per-ception Methodology (IPM) to investigate per-ceptions and misperceptions for dyads of autistic individuals and their family members. Both groups predicted that the other would rate them differently than they had themselves on a number of characteristics, evidencing an abil-ity to take a perspective distinct from their

on a number of characteristics, evidencing an abil-ity to take a perspective distinct from their own. Moreover, there were few differences for either group between predicted ratings of the other and actual ratings made by the other, such that both groups were fairly accurate in estimating others’ perceptions. When asked about reasons for misunderstandings, family members tended to cite an extreme impairment in social understanding of the autistic person, while autistic participants themselves

impairment in social understanding of the autistic person, while autistic participants themselves reflected on both the self and other as causes of misunderstandings.

A further double empathy barrier regarding metaperception may also relate to how autistic and non-autistic people see themselves relative to each other. Research conducted by Gernsbacher et al. (2017) explored the effect of manipulating the context (e.g., with whom) and reference (e.g., according to whom) on questionnaire items of the Broad Autism Pheno-type Questionnaire (designed to measure autistic traits). In their first experiment, autistic and non-autistic participants completed the

autistic traits). In their first experiment, autistic and non-autistic participants completed the questionnaire where the context specified their outgroup, e.g., for autistic participants an item would read “I like being around non-autistic people.” Both groups of participants self-reported more autis-tic traits when the context group was specified to the participants’ out-group. Yet autistic partici-pants reported having fewer autistic traits when the reference-group was specified to their

partici-pants reported having fewer autistic traits when the reference-group was specified to their in-group, e.g., for autistic participants an item would read “according to autistic people I have unusual eye contact.” These findings highlight that a disjuncture between autistic and non-autistic people exists for both parties in how they view themselves relative to each other, and that autistic people report fewer autistic traits when the reference group was other autis-tic people.

Heasman and Gillespie (2019b) examined metaperception through a video game where typically developing participants were led to believe they were interacting with another online player to complete a maze when in truth all players interacted with an AI that was programmed to behave the same way. The diagnostic status of the AI was manipulated across three groups of participants to be autistic, dyslexic, or having no diagnostic status at all. The findings highlighted that when the AI was believed

or having no diagnostic status at all. The findings highlighted that when the AI was believed to be autistic, they were seen as significantly more intelligent; however, they were also seen as less helpful. Moreover, partici-pants believed they were more helpful when the AI was believed to be autistic, despite there being no behavioral evidence of this. Such disparity between perceptions of being helpful and actual helping behaviors towards autistic people may further contribute to DEP effects,

helpful and actual helping behaviors towards autistic people may further contribute to DEP effects, alongside stereotyped beliefs associated with autistic intelligence and sociability (Heasman 2018).

Overall, studies of metaperception suggest that autistic people are quite good at estimating how specific others perceive them but may have some difficulty judging how they come across in general. Consistent with the DEP, non-autistic people demonstrate difficulty working out how they are perceived by familiar and unfamiliar autistic people.

Neurodiverse Interactions It has been observed that autistic people appear to have a greater affinity with other autistic people than non-autistic people generally do (Chown 2014). This raises the possibility that autistic people may show improved, if not superior, understanding of other autistic people and may consequently show few signs of “social impairment” in the company of their in-group. Heasman and Gillespie (2019a) examined 30 naturally occurring interactions between autistic adults

Heasman and Gillespie (2019a) examined 30 naturally occurring interactions between autistic adults playing video games, focusing on neurodivergent intersubjectivity, the process through which neurodivergent people develop shared understanding. Their research identified a particular pattern of social coordination that flourished between autistic interlocutors, where the tendency to describe in detail one’s own inter-est and experiences provided ample opportunity for other autistic interlocutors to

one’s own inter-est and experiences provided ample opportunity for other autistic interlocutors to discover points of interest and reciprocate with their own stories and ideas. Similarly, the tendency for autistic interlocutors to have a low expectation for tight coordination (an expectation often enforced in neurotypical interactions) resulted in flexibility for autistic participants to explore individual and cooperative ways of making sense of their environment. Specifically, these features of

and cooperative ways of making sense of their environment. Specifically, these features of gen-erously sharing one’s ideas and not enforcing an expectation that every exchange should result in reciprocation were complimentary, a pattern which is unlikely to flourish in autistic to non-autistic interaction which take place against the backdrop of normative interaction expectations (Heasman 2018).

Further support for double empathy observed within interactions was highlighted in research by Crompton et al. (2019) who examined informa-tion transfer between autistic adults, neurotypical adults, and mixed groups of autistic and neurotypical adults along a diffusion chain (groups of eight participants passing information from one person to the next). Their study observed a significantly steeper decline in the retention of detailed information in chains consisting of autistic and neurotypical

decline in the retention of detailed information in chains consisting of autistic and neurotypical participants. Chains only consisting of autistic participants showed similar levels of information retention compared to chains of neurotypical participants, suggesting that it is specifically the interface between autistic and neurotypical communication where problems arise. Furthermore, rapport ratings were lower in mixed chains than autistic- or neurotypical-only chains highlighting that

ratings were lower in mixed chains than autistic- or neurotypical-only chains highlighting that perceptions of sociability are also framed differently depending on the interlocutors.

Morrison et al. (2019) examined unstructured conversations between dyads consisting only of autistic people, only of typically developing people, and mixed dyads of autistic and typically developing people. All participants completed a rating evaluation of their partner after the conver-sation. Their results showed that on the whole autistic people were rated as more awkward, less attractive, and less socially warm than typically developing people by both typically developing people and

and less socially warm than typically developing people by both typically developing people and autistic partners. This suggests that some aspects of social interaction associated with autism are invariant to the disposition of the perceiver and target. However, their study also found that autistic people had better social affiliation with other autistic people, evidenced by sharing more about themselves and a greater interest in future interactions.

In should be noted that other studies have been less successful in demonstrating an in-group advantage in perception towards autistic people. For example, Brewer et al. (2016) found that both autistic and non-autistic viewers were poorer at identifying the emotions posed by autistic participants, suggesting that emotion expression in autism may be idiosyncratic to the individual. In Edey et al. (2016), no in-group advantage was observed: autistic viewers were equally able to identify the

al. (2016), no in-group advantage was observed: autistic viewers were equally able to identify the mental state depicted in animations created by autistic and non-autistic participants. Nevertheless, more research is needed in this area as it remains possible that an in-group advantage in understanding may be more evident natural contexts.

Interventions Addressing the DEP The DEP has been incorporated into a number of autism training and intervention programs. It is one of five elements of best practice in autism that form the National Autistic Society’s (UK) SPELL framework, which incorporates measures to reduce the double empathy gap. Other autism interventions that target the social situation rather than solely the autistic person also have the potential to ameliorate DEP effects. For instance, ATLASS training by Studio3

person also have the potential to ameliorate DEP effects. For instance, ATLASS training by Studio3 focuses on acknowledging how the context (carer or service staff) influence the autistic person’s behavior, mediated by levels of stress. AT-Autism also include elements of the DEP in their Synergy program which is for professionals working in schools and aims to develop their understanding of how various factors including aspects of the social environment affect the autistic child’s experience of

factors including aspects of the social environment affect the autistic child’s experience of the world. Further research is needed to evaluate such interventions taking into account perspectives of both the autistic and non-autistic participants.

Future Directions Expanding the current evidence base for the double empathy problem will help to improve understanding about the processes through which it occurs, its scale and impact across different contexts of social life, and possible interventions that can ameliorate its negative social effects for both autistic and non-autistic individuals.

Further research could explore the empirical link between being misunderstood or perceived negatively and measures of quality of life (e.g., mental health) (Milton and Sims 2016). A variety of factors could be investigated with respect to this relationship. For example, the effects of a two-way breakdown in empathy and under-standing may result from a difference between monotropic individuals, who have the tendency to localize attentional resources on a specific interest to the exclusion of

who have the tendency to localize attentional resources on a specific interest to the exclusion of other potential inputs, and polytropic individuals who are capable of spreading their attentional resources to multiple inputs simultaneously (Murray 1992; Murray et al. 2005). Further research on the link between the DEP and monotropism could shed light on the developmental origins of the DEP, particularly given that most research to date has focused on adults, but we might assume these

DEP, particularly given that most research to date has focused on adults, but we might assume these difficulties arise as a consequence of a transactional, albeit socially situated, developmental process. Another feature to explore is the role of culture in amplifying misunderstandings. Milton (2014b) explored theoretically to what extent the DEP is culturally embedded, given the different repre-sentations and approaches to autism in popular culture and suggested that culture may contribute to

and approaches to autism in popular culture and suggested that culture may contribute to some difficulties in “interactional expertise” (Collins and Evans 2007) between autistic and non-autistic people. Cultural misinterpretations are an area of interactional difficulty that are easier to change than one’s dispositional nature, thus in addition to developing new, holistic interventions, the DEP may also have implications for updating existing interventions, which often place social normativity as

also have implications for updating existing interventions, which often place social normativity as an assumed improvement on quality of life, when this is not always the case (Milton 2016b).

The DEP may have important application to a number of different areas of social life, particu-larly for older autistic populations who experience rapid increases in the size and diversity of their social networks as they progress through adolescence and adulthood (White et al. 2009). For example, as mentioned above, the DEP may help to explain why so many autistic adults have such high comorbidity with mental health issues. Pressures for children to become independent in late adolescence can

with mental health issues. Pressures for children to become independent in late adolescence can place an increasing strain on family relationships, which may be amplified by the DEP effects especially if autistic people are disproportionately held accountable for break-downs in understanding (Heasman and Gillespie 2018). Breakdowns in family relations may consequently deny autistic people of the few social supports available and could detrimentally impact perceptions of autism acceptance (Cage

few social supports available and could detrimentally impact perceptions of autism acceptance (Cage et al. 2018). Future directions for research should examine the perspectives of autistic family members in addition to autistic people themselves to identify the supports required as they transition towards being an informal carer.

Finding and retaining employment for autistic people is another context in which the DEP is particularly salient. The social encounter of the job interview and the difficulty in managing professional relations (which are qualitatively different from all other relationships) are two environments governed by complex roles, norms, and expectations which can easily lead to misunderstandings (Hendricks 2010). Future research can examine employers’ potential biases in social perception of autistic

2010). Future research can examine employers’ potential biases in social perception of autistic adults which may impede progress in job interviews and daily working tasks. This may help to identify the contributing factors towards the current autism employment gap observed in many countries.

The DEP may also help to shed light on the numerous encounters autistic people face as they progress through the justice system, such as providing a police statement or testimony in court. In such interactions, autistic people will be highly anxious potentially reducing their credibility as their behavior and intentions are susceptible to misinterpretation. In addition, research has shown that autistic people have difficulty in recalling events personally experienced (Maras and Bowler 2014),

autistic people have difficulty in recalling events personally experienced (Maras and Bowler 2014), thus future directions for research can examine the perspectives of magistrates in interpreting and scaffolding such recall, as well as the impressions that jury members may take from such encounters.

Late diagnosis of autism can leave many autistic adolescents and adults facing a variety of neurotypical interactions as they attempt to access support and services for their disability. The process of assessing disability needs may be further complicated by masking and camouflag-ing (Dean et al. 2017) and anxiety about outcomes both in terms of financial support and impacts on one’s identity (Kite et al. 2013). Moreover, research on other disability assessment proce-dures have highlighted the

et al. 2013). Moreover, research on other disability assessment proce-dures have highlighted the difficulty in translating one’s impairment into criteria on assessment forms since caregivers and care-receivers have divergent perspectives on the burden of care (Moore and Gillespie 2014). Further research should therefore examine the DEP in terms of the perspectives involved in the social encounters experienced throughout the diagnostic pathway, and the institutional barriers that exist between

experienced throughout the diagnostic pathway, and the institutional barriers that exist between the disabilities experienced and the instruments used to measure the support needs of disabilities.

Sexuality, sexual health, and gendered self are important frontiers for future research on the DEP since one’s sense of self is relationally formed (Dewinter et al. 2017; Yergeau 2017). In addition to misunderstanding autistic perspectives, the complex sensory needs many autistic people experience may further contribute to mis-alignment of perspective in sexual encounters. Autistic vulnerability in social understanding means there is great risk of potential harm or abuse that might result from

in social understanding means there is great risk of potential harm or abuse that might result from DEP misunderstand-ings in intimate relationships. Further research should explore these risk factors to inform education and support provided.

Finally, the DEP also has epistemological implications in terms of participatory and emancipatory research. The two-way nature of misunderstandings that are observed in interper-sonal relations also exist between researcher and participant. For example, in the UK, autistic adults report a mismatch between their priorities for research and the funding for autism research, which should focus more on how to make a difference to people’s day-to-day lives (Pellicano et al. 2014). It is therefore

on how to make a difference to people’s day-to-day lives (Pellicano et al. 2014). It is therefore important that research design and engagement benefit from autistic involvement (Milton and Bracher 2013; Milton 2014b) in order to have a positive impact on outcomes for autistic people (Fletcher-Watson et al. 2019).

**Double-Blind Study** Definition DOUBLE-BLIND TRIAL. The double-blind trial is a research method that attempts to reduce the bias in research studies. In the classic double-blind trial, subjects are randomly assigned to receive an active medication or a placebo. The placebo is formulated to look and perhaps even taste like the active medication – but the placebo contains no active ingredients. We use the term “double-blind” to indicate that investigators and patients (and parents) do not know

use the term “double-blind” to indicate that investigators and patients (and parents) do not know whether the patient is getting the active medication or the placebo. The treatment mask is intended to reduce bias and expectation.

When a new medication is being introduced, there may be a lot of interest and hope for the new medication. In the absence of placebo control, this interest and hope could lead to false impressions about the benefits of the medication. Indeed, high expectations can also contribute to the so-called “placebo effect.” In several recent studies in chil-dren with autism spectrum disorders, as many as one third of the subjects on placebo were classi-fied as much improved or very much improved. For

as one third of the subjects on placebo were classi-fied as much improved or very much improved. For example, in the citalopram study, 34% of the subjects randomly assigned to placebo showed a positive response rated by clinician who was blind to treatment assignment.

Several elements are essential in the conduct of a double-blind, placebo-controlled trial. First and perhaps most important is random assignment. Random assignment is essential to ensure that the two treatment groups are similar. Second, there should be a match between the entry criteria and the study treatment. For example, in the ris-peridone trial conducted by the RUPP Autism Network, subjects were required to have serious behavioral problems. This ensures that there is room for improvement

were required to have serious behavioral problems. This ensures that there is room for improvement on the target clinical symptoms. This is important for ethical and statistical reasons. It is fair to compare a new medication to placebo when it is unknown whether the new treatment is effective. In most situations, however, it seems unfair to enroll sub-jects into a medication study if it was known that the active treatment has a low chance of confer-ring benefit. In statistics, investigators are

that the active treatment has a low chance of confer-ring benefit. In statistics, investigators are inter-ested in finding out if the new treatment is superior to placebo. Subjects who have low severity on the clinical target have little room for improvement, which will make it difficult to detect change. Finally, there is the issue of sample size. A trial that is too small cannot answer the question whether the new medication is superior to pla-cebo. This could be unfortunate if a beneficial

whether the new medication is superior to pla-cebo. This could be unfortunate if a beneficial treatment is abandoned too soon because it failed to show efficacy in a small trial. On the other hand, treatment trials are expensive. Moreover, we are asking subjects and families to consider randomization to placebo. A trial should only be as large as needed to test whether the new treatment is superior to placebo. Investi-gators have to determine the minimum magnitude of benefit that would be

superior to placebo. Investi-gators have to determine the minimum magnitude of benefit that would be considered clinically meaningful and then calculate the sample size needed. The “minimum clinically meaningful benefit” depends on the treatment target. For example, self-injurious behavior is a serious prob-lem. Even a modest level of benefit might be considered meaningful. Repetitive behavior such as rocking or watching the same video over and over can be problematic – but not a severe as

such as rocking or watching the same video over and over can be problematic – but not a severe as self-injury. For a less severe behavior, a higher level of benefit might be demanded of a new treatment. In general, the smaller the difference between med-ication and placebo, the larger the trial has to be.

**Douglass Development Disabilities Center** Major Areas or Mission Statement The Douglass Developmental Disabilities Center (DDDC) is a unit of the Graduate School of Applied and Professional Psychology at Rutgers, the State University of New Jersey, and is located in New Brunswick, New Jersey, on the Rutgers campus. The DDDC opened in 1972 to serve children with autism. Because of the university affiliation, the Rutgers Board of Governors had to officially approve its establishment. In the

affiliation, the Rutgers Board of Governors had to officially approve its establishment. In the begin-ning, there were nine children, two teachers, and several graduate students as well as a small cohort of undergraduates from the university.

Landmark Contributions In the decades since its modest start, the DDDC has steadily expanded its services and refined its mission. The current tripart functions of the DDDC are to (1) serve people on the autism spectrum and their families, (2) educate under-graduate and doctoral students in the latest methods of treating people with autism spectrum disorders (ASD), and (3) do research on questions of importance in the treatment of people with autism and on meeting the needs of their families.

of importance in the treatment of people with autism and on meeting the needs of their families. From its inception, the DDDC has relied on the principles of applied behavior analysis (ABA) to guide services. As the teaching strategies derived from ABA have grown more elegant and precise, so too have the teaching methods at the Center. Methods that were once at the heart of practice in the 1970s have evolved steady into the more effective and extensively studied techniques in use in the

1970s have evolved steady into the more effective and extensively studied techniques in use in the twenty-first century.

Major Activities Direct Service to People with Autism Two units at the DDDC are devoted to center-based direct instruction of people with autism. These are the Douglass School and Adult Services.

The Douglass School is approved by the New Jersey Department of Education as a “college-operated program” to serve children and adoles-cents from 3 to 21 years of age with autism spec-trum disorders (ASD) who need a specialized setting to address their educational needs and behavior intervention services to address inappropriate behaviors. Because of a very intense staff to student ratio, the Douglass School has sufficient staff members to address the unique needs of each learner. Both skill

Douglass School has sufficient staff members to address the unique needs of each learner. Both skill acquisition and behavior reduction programs for all learners regardless of age are based on the science of applied behavior analysis. Specific strategies vary based on the needs of the learner and the most current empirically validated and least intru-sive strategies that meet the needs of each individ-ual. Families are urged to be active in the education of their children and are provided with

Families are urged to be active in the education of their children and are provided with training in ABA teaching methods as well as being invited to do regular observations at the Center. In addition to work in the classroom and at home, every effort is made to bring students into the community so they can use their skills in the settings where they will be most appropriate.

The DDDC’s Small Wonders Preschool is an integrated classroom that has both children on the autism spectrum and typically developing peers who serve as role models for age appropriate behavior. This classroom model, which was opened in the early 1980s, has been adopted by other programs in the public and private sector. Over the years, approximately half of the target children served in this classroom have left the Center for a regular education classroom in a public or private school.

The adult services program serves adults with autistic disorder and intellectual disability who are 21 years of age or older. These adults either continue to need a very intense adult to client ratio and/or have other significant challenges that make it difficult for them to be in a less specialized adult program. The Center’s objective for every person in the adult program is to integrate them as fully as possible into the community. As of 2011, a little under a quarter of the adults spend 5

as fully as possible into the community. As of 2011, a little under a quarter of the adults spend 5 days a week in community vocational settings, the majority of the other adults spend 3–4 days a week in a community vocational setting, and it is a rare for an adult client to have no vocational activities outside of the Center. These vocational placements include janitorial work at local restau-rants, yard work both on and off of campus, house cleaning, and doing basic clerical work in offices

yard work both on and off of campus, house cleaning, and doing basic clerical work in offices including filing, copying, and other support tasks.

engaged in vocational tasks 5 days a week, all of them take part in community-based recreational activities. The parent of one adult at the center created a private entity called “Men with Mops” that bills private individuals and companies for the services the adults provide and issues paychecks to the workers.

Consultation to Schools and Families In addition to direct service to people with autism, the Center also provides extensive consultation services to public and private schools in the New Jersey, New York, and Pennsylvania area. These services are provided by staff members working for the DDDC’s Outreach Services. Schools sign contracts with Outreach Services to provide in-class consultation to teachers who have children with ASD in their classrooms or for support in establishing an

to teachers who have children with ASD in their classrooms or for support in establishing an in-district applied behavior analysis program. These consultations vary from once or twice a month to several days a week depending on the needs and request of the school district. Some districts contract for a brief period and others draw on these consultation services for many years to ensure that their teachers continue using state-of-the-art ABA techniques as those methods evolve.

Outreach Services also provide two kinds of home-based services. One of these is early intervention for children under the age of 3 years and the other is home-based services on a full-day basis or after the child’s school day has ended. The early intervention program (EI) serves infants and toddlers younger than 3 years of age in their own homes. In addition to direct services to the child by the home consultant, parents are also taught the ABA intervention techniques so they can use them in

home consultant, parents are also taught the ABA intervention techniques so they can use them in their daily interactions with their child. Among the older children who receive home-based services about 30% have full day/4 or 5 days a week intervention. The rest of the families receive services after school or on a part-time basis during the day. Again, these services are based on the principles of ABA and typically involve direct instruction to the child as well as helping parents master the

of ABA and typically involve direct instruction to the child as well as helping parents master the techniques so they can apply the ABA methods on their own.

Other Services to Families In addition to educational/treatment services through Douglass Outreach, the DDDC provides assessment and diagnostic services for families and schools. This includes diagnostic assessments, intelligence testing, speech and language assessments, and learning evaluations. The Center has a group of full-time staff and part-time consultants who do these evaluations and make treatment recommendations. Douglass Outreach Services have an NJ Department of Education–approved

treatment recommendations. Douglass Outreach Services have an NJ Department of Education–approved child study team for providing second opinions at the request of families and/or schools. Outreach Services staff members also do functional assessments of problematic behaviors for schools and families and make detailed treatment recommendations based on these assessments.

Educating Undergraduate and Graduate Students Educating undergraduate students about autism and behavioral intervention strategies has been at the core of the DDDC’s mission since its inception. Junior and senior undergraduate students at Rutgers University can enroll in fieldwork in psychology. Through the field work course, 40–50 undergraduates per semester participate in one day per week of clinical work in a classroom for students or adults with autism. Their hands-on clinical training is

work in a classroom for students or adults with autism. Their hands-on clinical training is supplemented by didactic training and lectures by the DDDC’s teachers, graduate teaching assistants, and faculty. Fieldwork training covers topics such as behavioral intervention, applied behavior analysis teaching strategies, assessment, curriculum, and characteristics of autism. Undergraduates are able to take a second semester of fieldwork and participate in an advanced seminar while continuing their

take a second semester of fieldwork and participate in an advanced seminar while continuing their clinical experience.

Undergraduates are also able to enroll in a research methods class focusing on single-case design and applied behavior analysis research methodology. A small number of students enrolled in the research course each semester spend 10 h per week participating in ongoing DDDC research projects and activities such as running experimental sessions, integrity and reliability data collection, literature review and critique, and data coding and compilation. Students are also active in a weekly seminar

review and critique, and data coding and compilation. Students are also active in a weekly seminar led by a senior graduate student.

Graduate training at the DDDC takes place in one of three ways. Primary graduate training experiences are available to the full-time doctoral program in clinical psychology through the Graduate School in New Brunswick and the Graduate School of Applied and Professional Psychology at Rutgers, the State University of New Jersey. Graduate students are offered practicum positions or graduate assistantships at the DDDC. Graduate students serve as behavioral consultation staff and support in the

at the DDDC. Graduate students serve as behavioral consultation staff and support in the assessment and treatment of challenging behavior, while also supporting case management and behavior analytic research. Advanced doctoral students also support the DDDC’s research mission while conducting independent theses and dissertations. Graduate students gain experience in teaching by coordinating the undergraduate courses in fieldwork and research.

Other graduate training at the DDDC takes place through the University’s Center for Applied Psychology and Continuing Education program. Graduate students from other university departments and professionals from the general community can enroll in a series of graduate courses taught by DDDC faculty. These courses are designed to fulfill the academic requirements for becoming board-certified behavior analysts.

The Research Mission of the DDDC The research mission of the DDDC is to explore best practice behavior analytic treatments for autism and contribute to the dissemination of research to support their use. Research activity at the DDDC is driven by the clinical needs of clients at the Center and the needs of the general and scientific communities to which we belong. As such, the focus of the DDDC’s clinical research shifts according to the presenting needs of the students and the status of the

clinical research shifts according to the presenting needs of the students and the status of the science in the field of behavioral autism treatment.

The DDDC also works collaboratively with researchers across different disciplines at the University and at other University settings, by supporting recruitment, methodology consultation, and providing autism expertise to projects by multidisciplinary research teams.

Current and ongoing research themes in the DDDC research plan are the evaluation of behavior analytic teaching strategies, methods for assessing and intervening with challenging behavior, impact of autism on families, and methods for assessing and predicting treatment outcome and progress in behavioral treatment.

Down Syndrome Synonyms Down’s syndrome; Trisomy 21 Definition This condition, first described by Langdon Down in the 1860s, is caused by the presence of three copies of chromosome 21 (trisomy 21). The trisomy can reflect an entire extra copy of chromosome 21 or a partial one (the latter due to translocation). At one time, a very common genetically caused form of intellectual disability, the frequency has decreased given the potential for diagnosis early in the pregnancy. Both cognitive

frequency has decreased given the potential for diagnosis early in the pregnancy. Both cognitive difficulties and characteristic features and medical problems are present.

Overall, cognitive level is typically in the mild to moderate range of impairment (average IQ 50). Individuals with mosaic Down syndrome (where only some cell lines exhibit the trisomy 21) may have higher IQs. Physical problems include slow physical growth and characteristic features such as unusual facial appearance (due to a round face, epicanthal folds, small chin, and large tongue). Cardiac defects are frequent. Other medical problems can include seizures, ear infections, thyroid problems,

are frequent. Other medical problems can include seizures, ear infections, thyroid problems, as well as leukemia and higher rates of Alzheimer’s disorder. Educational interventions focus on fostering overall development and adaptive skills to achieve the highest possible functional outcomes in adults.

Interest in Down syndrome relative to autism arises for several reasons. It has frequently been the case that individuals with Down syndrome have been used as control or comparison groups in studies of autism. There has also been an impression that Down syndrome individuals are typically more social than might otherwise be expected given their cognitive level although several case reports suggest that Down syndrome and autism co-occur. Howlin et al. (1995) described four such cases and

suggest that Down syndrome and autism co-occur. Howlin et al. (1995) described four such cases and emphasized the importance of correct diagnosis of both conditions to be able to provide appropriate services.

Doxepin  Drama and Autism Definition I regard the theatre as the greatest of all art forms, the most immediate way in which a human being can share with another the sense of what it is to be a human being.

Oscar Wilde (as cited in Corbett et al. 2011) Drama interventions attempt to provide creative, enjoyable, and engaging opportunities for people with autism spectrum disorders (ASD) to practice a wide range of social skills in the safety and protection of a workshop environment. Ranging from whole group to one-to-one settings, drama interventions operate on the basis of the creation of a fictional context (i.e., a pretend situation), which playfully captures the attention of the participants and

context (i.e., a pretend situation), which playfully captures the attention of the participants and encourages interaction and communication with others. Operating on a continuum, there are several different approaches to using drama as an intervention with people with ASD, varying from involvement in theater performance and working on play scripts at one end to improvisation and simulation at the other. Underpinning all forms of drama interventions is an intention to actively involve the

at the other. Underpinning all forms of drama interventions is an intention to actively involve the participant in exploring and making sense of the world in which they live and working creatively with them to understand their place and their relationship with others in that environment. Drama interventions are structured, arts-based, educational mediations, involving a facilitator, teacher, or therapist who draws from a range of creative and fun teaching and learning strategies to actively

therapist who draws from a range of creative and fun teaching and learning strategies to actively involve the participant in learning for increased social awareness, communication, and understanding. Typically, both participants and facilitators take on roles ranging from simple two-dimensional roles, such as pretending to be a shopkeeper, dentist, or grandmother, to highly developed roles such as pretending to be a superhero going on a mission to defeat Lord Taylor and save the world.

“Going into role” is an important defining characteristic of drama interventions and often involves a facilitator “in role,” improvising an everyday situation with the participants who may take on a different role and respond/react to the situation as it unfolds in a workshop setting (commonly referred to as role-playing; see O’Sullivan 2011). These roles can be swapped and developed, adding in new complications or changes each time a scene is replayed. Alternatively, if participants are

in new complications or changes each time a scene is replayed. Alternatively, if participants are socially and cognitively able for it and in particular if they are able to differentiate between fiction and reality, both facilitator and participants can “go into role” and engage in exciting, action-filled, improvised drama, which facilitates the practice and exploration of a wide range of personal and social skills. During such interventions, both participants and facilitator together try to

and social skills. During such interventions, both participants and facilitator together try to unravel and solve various fictional mysteries and problems (this activity is typically referred to as drama in education or process drama; see Bowell and Heap 2013; Edmiston 2014). The former approach is often used in drama therapy settings on a one-to-one basis or with small groups with explicit therapeutic objectives in a clinical setting, and the latter is most often associated with inclusive

objectives in a clinical setting, and the latter is most often associated with inclusive classroom practice in schools or in extracurricular drama classes with specialist drama teachers working with groups of between 8 and 14 participants.

Theater as an intervention is typically associated with working from existing scripts or scripts which the group devise/create from their own experiences/interests and which participants rehearse and then perform in front of an audience. In contrast, drama in education places much less emphasis on the performance aspect and highlights the process and value of engaging with fictional scenarios, where there is no script but participants react to the fictional situation in an improvised manner.

where there is no script but participants react to the fictional situation in an improvised manner. Drama in education is also commonly referred to as “process drama.” Drama therapy (written as dramatherapy in the UK and several other European countries) is closely related to process drama but is defined as the use of drama as a therapeutic method. Similarly, psychodrama is active and experiential and encourages the spontaneity and creativity of clients for therapeutic purposes.

Historical Background From the 1960s onward, a parallel approach was developed to working with children and people with special educational needs (SEN). Some practitioners started to specialize in the emerging field of drama therapy, notably led by Sue Jennings (1982, 1987), and others began to work in this area using drama interventions developed by Dorothy Heathcote (Johnson and O’Neill 1984). Both traditions use similar techniques (dramatic play, improvisation, role-play, movement, mime,

Both traditions use similar techniques (dramatic play, improvisation, role-play, movement, mime, drama games, use of masks and puppets, and working with scripts, myths, and stories), often with similar equipment, such as dress-up materials, a box of clothes, art supplies, stories, books, and musical instruments. Both share interweaving influences from the areas of drama, theater, and psychology and aim to work on similar skills: expressing and exploring feelings, developing spontaneity,

and aim to work on similar skills: expressing and exploring feelings, developing spontaneity, imagination and creativity, improving self-image and self-confidence, and developing social relationships. However, they have very distinct purposes. Drama therapists use elements of the performing arts in their work and apply it in a clinical setting. It has been defined by Sue Jennings (1982) as “the specific application of theatre structures and drama processes with a declared intention that it is

specific application of theatre structures and drama processes with a declared intention that it is therapy,” while Moreno (1983) described its forerunner psychodrama as “the science which explores the truth by dramatic methods. It deals with inter-personal relations and private worlds.” An explicit emphasis on using drama as a therapeutic method in a clinical setting differentiates these practices from other forms of drama interventions, which focus on more general development and practice of

from other forms of drama interventions, which focus on more general development and practice of personal and social skills and thus feature more prominently in the literature about interventions for people with ASD.

Despite the fact that Viktorine Zak, a nurse at the Vienna Children’s Hospital where Hans Asperger worked, developed drama programs to teach social skills to children with ASD in the 1940s (Asperger, [1944], as cited in Attwood 2007), there has been little sustained attention to its use in the intervening period and even fewer published studies discussing the use of drama and theater interventions with people with ASD. Passing mention of drama is made when discussing functional or symbolic

with people with ASD. Passing mention of drama is made when discussing functional or symbolic play as a social skills intervention. References to structured social and sociodramatic play (Conn 2007) and role-play (Nelson 2010) predominate in the field (the former particularly in early years settings), with limited reference to participants engaging in theater performance (Schneider 2007; Vickers 2005) or drama interventions (Sherratt and Peter 2002; O’Sullivan et al. 2009; 2010). However,

2005) or drama interventions (Sherratt and Peter 2002; O’Sullivan et al. 2009; 2010). However, despite its poor presence in the scholarly literature, online information is available about several recently established programs, associations, and professional publications and magazines dedicated to the use of theater and drama interventions with children and young people with ASD. Notable examples include Andrew Nelson and Parasuram Ramamoorthi’s “Applied Theater Research and Autism Network”

include Andrew Nelson and Parasuram Ramamoorthi’s “Applied Theater Research and Autism Network” (ArTRAN) and its associated “Velvi Theater Heals” organization based in India; Stanley Greenspan’s “Floortime,” which inspired Elaine Hall to establish the well-known “Miracle Project” in California leading to the release of “Autism: The Musical”; the Autism Theater Network (part of the Applied Theater Center); “Social Drama” being developed by Carmel O’Sullivan in association with ASPIRE (the

Center); “Social Drama” being developed by Carmel O’Sullivan in association with ASPIRE (the Asperger Syndrome Association Of Ireland) in Dublin, Ireland; Theater Horizon; Face Place Theater Project in Indiana; Social Emotional NeuroScience Endocrinology (SENSE) Theater in California; People’s Light & Theater in Pennsylvania; and ArtStream in Washington, D.C. in addition, and several professional theater companies and playhouses have established programs involving what they describe as the use

theater companies and playhouses have established programs involving what they describe as the use of occupational therapy and therapeutic interactive performances for and with young people with ASD, such as at the Florida Repertory Theater Company, Des Moines Playhouse in Iowa, and the Red Kite Project at Chicago Children’s Theater. The first autism-friendly performance on Broadway took place in 2011 (The Lion King) and has become one of the fastest growing services for people with

place in 2011 (The Lion King) and has become one of the fastest growing services for people with communication barriers (Mandell 2013).

Rationale or Underlying Theory ASD is characterized by differences in social communication and restricted interests and repetitive behaviors. Although individuals with a diagnosis of ASD have uneven cognitive and social skills profiles, they are all likely to experience a degree of challenge in the areas of pragmatics (the social use of language) and social cognition (being able to see things from another person’s perspective). It is acknowledged that teaching such skills should best be

from another person’s perspective). It is acknowledged that teaching such skills should best be attempted using concrete materials and opportunities to make abstract concepts meaningful and tangible. However, they are often taught in isolation of real world, authentic contexts, which limits generalizability to other situations beyond the confines of the treatment room or classroom (O’Sullivan et al. 2010). In contrast, all drama interventions, whether theater, therapy, or process drama

et al. 2010). In contrast, all drama interventions, whether theater, therapy, or process drama oriented, place participants in fictional roles and situations, many of which mirror or represent real life and which require social communication, problem-solving, working in pairs/small groups and in whole group activities, being flexible and receptive to other’s ideas, constructively building on their suggestions, negotiating, collaborating, cooperating, and exercising global and social observation

suggestions, negotiating, collaborating, cooperating, and exercising global and social observation skills rather than local and physical processing (Russell-Smith et al. 2012; O’Sullivan et al. 2012). Drama interventions engage participants experientially, introducing them to fictional situations and stories, and somewhat larger than life, colorful characters who attract their curiosity and attention on a number of levels: emotionally, cognitively, personally, and socially. The intention is to

on a number of levels: emotionally, cognitively, personally, and socially. The intention is to engage participants in an exploration of that character’s life and to actively participate in following that journey, working collaboratively with peers and supporting teachers/facilitators to resolve various exciting and challenging situations as they arise (O’Sullivan et al. 2010).

As emotional education of people with ASD is an important component of their development (Sappok et al. 2014), drama interventions operate on the premise that emotions are rational and cognitive in kind and therefore can be educated (Best 1992). In drama interventions, the techniques used typically focus on communication skills and building social relationships rather than emphasizing only the dramatic or theatrical art form, as would be the case in professional actor training. Drama

the dramatic or theatrical art form, as would be the case in professional actor training. Drama interventions are the medium through which people with ASD can encounter a range of human experiences and are offered the possibility of considering ideas from different angles and perspectives while expanding their conceptual horizons, deepening their understanding of human behavior, and, in so doing, appropriately educating their emotions and increasing their empathy with others.

Drama interventions draw from the traditions of dramatic play, process drama, theater, and developmental psychology, particularly:
*   The “as-if” mode of thinking necessary for spontaneous make-believe play (Taylor and Warner 2006)
*   Theater (Brook’s Empty Space, 1968, and Boal’s spect-actor, 2002) *   Education (Dewey’s progressivism, 1938, and Vygotsky’s social constructivism, 1978)

*   Anthropology (ritual and myth, Schrader 2012) *   Social, developmental, and clinical psychology (object relations, symbolic interaction theories, and personal construct psychology, Langley 2006)

Drama theorists have developed strategies to create a safe and structured environment for participants. These include such techniques as a “drama contract” to diminish potential behavior management issues and distancing conventions so that participants are removed in time and space from the characters they are exploring or the roles they are playing (Jones 2007; Chasen 2011). This facilitates an important objective distancing from the participants’ own lives, but experiences are gently

an important objective distancing from the participants’ own lives, but experiences are gently resonated back to the individual through periods of planned reflection in each session. Techniques such as “protection into role” and “protection into emotion” (Davis 2014; O’Sullivan 2011) gently ease participants into role without placing social and communication demands on them for which they may not yet be ready.

It is in the domain of what are traditionally called “soft skills” that the use of drama interventions can play a role, pushing the boundaries further than what can be achieved through social skills interventions alone. Drama’s relevance as an intervention with people with ASD is through its ability to create stories in which participants come face to face with the world: recognizing their world and their relationship to it (Davis 2014). Heathcote (Johnson and O’Neill 1984) developed a series

and their relationship to it (Davis 2014). Heathcote (Johnson and O’Neill 1984) developed a series of drama conventions, which allow participants to engage with the world from different perspectives, to see things from different points of view. This approach fits well with the theory of mind. Taking on a role in drama in education allows the participant to “stand in the shoes” of another person and respond to the unfolding fictional story “as if” they were that person. The key difference

and respond to the unfolding fictional story “as if” they were that person. The key difference between this approach to drama and more formal theater approaches is that in the latter, the participant often takes on the full set of attributes of a character (rather than a role), imitating how they walk, talk, and behave, which many people with ASD are good at and enjoy doing but which reduces the educational potential of the intervention, as the participant metaphorically “steps out of

the educational potential of the intervention, as the participant metaphorically “steps out of character” as soon as the activity is over and leaves much of the learning entailed in the experience behind in the rehearsal room or workshop. In drama education and drama therapy approaches, the participant takes on only a few of the characteristics of the role they are playing, and thus they are able to self-spectate, i.e., observe themselves playing that role and learn from the experience through

to self-spectate, i.e., observe themselves playing that role and learn from the experience through reflection both during the drama and afterward (O’Sullivan 2011). It increases the potential for transferability of social communication skills, imagination, and flexibility into other settings beyond the immediate drama context.

Goals and Objectives Drama interventions are closely related to social, symbolic, cooperative, and pretend play, social interventions, and social skills interventions. However, in drama the work is generally developed more in the domain of exploration, experiential learning, and reflection rather than focusing on the teaching and practice of social communication skills out of context. Drama interventions are intended to facilitate the exploration of pragmatics, social cognition, social

interventions are intended to facilitate the exploration of pragmatics, social cognition, social imagination, social interaction, social emotional reciprocity, and personal development in contextualized and enjoyable “as-if” situations. Participants are gently eased into a make-believe scenario through the use of character and role and occasionally using props and costume, where they are placed into positions which require them to behave “as if” they are someone else encountering that

placed into positions which require them to behave “as if” they are someone else encountering that particular situation and interacting with others, drawing on their personal and social skills repertoire to address and/or resolve the fictional scenario. The overriding objective of using drama interventions with people with ASD is to assist in the develop-ment of theory of mind, perspective taking, and executive functioning [encoding, processing, and integrating social information] (Minne and

and executive functioning [encoding, processing, and integrating social information] (Minne and Semrud-Clikeman 2012; Guli et al. 2013) while simultaneously using pragmatic language skills in a holistic experience where social skills are integrated in real-time experiences rather than being taught in isolation. Drama interventions contextualize social skills in incremental episodes according to the cognitive and social functioning abilities of participants and facilitate exploration and

to the cognitive and social functioning abilities of participants and facilitate exploration and examination of identity (Hodermarska 2013; Goodley and Runswick-Cole 2011), autonomy (Carter et al. 2013), independence, empathy, emotional development, and developmentally appropriate relationships (see Goldstein and Naglieri 2013).

Treatment Participants Drama interventions are used with children (typically aged 6 and older), with adolescents, and to a much lesser degree with adults, with a wide range of abilities and symptom severity across the autism spectrum. The most common participants are school-age children in extracurricular settings such as social skills and theater groups, although there is some evidence that process drama interventions are being increasingly used in mainstream inclusive educational settings

drama interventions are being increasingly used in mainstream inclusive educational settings and special schools (Schneider 2007; Sherratt and Peter 2002). Research has indicated that drama interventions are likely to be more successful for children with higher social interaction and communication skills which are often prerequisites for engagement in drama interventions (Chang et al. 2014).

Treatment Procedures Individuals involved in drama interventions typically participate in one of three broad areas of treatment:

1.  Theater and performance 2.  Drama in education and process drama 3.  Drama therapy and psychodrama The first two categories do not require referral, and participants (often with support from parents, teachers, or other caregivers and professionals) self-select to attend such activities. In the case of attendance at drama therapy and psychodrama, referral is made to a specialist therapist who assesses the individual’s needs and establishes treatment goals and objectives as part of an overall

the individual’s needs and establishes treatment goals and objectives as part of an overall treatment plan, often working within a multidisciplinary team (Silverman 2006). Owing to its explicit therapeutic objectives, drama therapy and psychodrama adhere to strict regulatory guidelines relating to optimum group size, ranging from individual sessions to small group (3–5 people) and large group sessions (more than 6 people), and comply with formal requirements for evaluation and reporting

sessions (more than 6 people), and comply with formal requirements for evaluation and reporting mechanisms (Bailey 2010). Depending on the needs of individuals, the duration of drama therapy may range from 30 to 50 min sessions, one to three times weekly over a period of 10–16 weeks, although longer term therapy can be extended over a period of 2 or 3 years (Chasen 2011).

Participation in drama and theater in education activities typically involves groups of 8 or more subjects, in weekly sessions of 1–3 h duration, over a period of 6 months to a year. Where individuals enjoy participation in these drama interventions, their attendance may continue for a much longer period of time (O’Sullivan 2014). Formal and systematic assessment and evaluation methodologies are rarely used in such practices, where the emphasis is on participating in a highly charged social

rarely used in such practices, where the emphasis is on participating in a highly charged social situation which requires participants to interact in a meaningful way and build social relationships with others in the group (Nelson 2010).

In all three treatment categories, social learning and experience is facilitated through active engagement with the art form of drama and theater which is used as a vehicle to explore:
*   Psychosocial difficulties (including cognitive learning difficulties; difficulties related to defining and expressing feelings, interacting with others, planning and decision-making, and understanding the intentions of others; emotional and behavioral problems; and socially inappropriate behavior)

*   Neurodevelopmental difficulties (including difficulties in concentrating, motor coordination, dyspraxia, hyperactivity)
*   Mental health/psychological difficulties (including agitation, anxiety, mood swings, loneliness, depression, phobias)
*   Behavioral difficulties (including aggressive physical and verbal behavior, conduct disorders, oppositional defiant behavior) (Andersen-Warren 2013)

Each drama intervention session typically involves an opening and a closing activity to mark the beginning and end of the class, where participants are seated in a circle and greet one another, share any stories or “news” they have, and play some warm-up games and drama exercises to nurture the group identity. Opportunities for reflection are usually built in to the structure of each session to allow participants to relate what they have experienced in the drama or theater workshop to their own

participants to relate what they have experienced in the drama or theater workshop to their own lives.

Efficacy Information Despite the fact that social communication skills are core challenges associated with ASD, there is still relatively little attention paid to interventions in this area in the literature, and areas such as sociodramatic play, imaginative play, symbolic play, creative dramatics, arts therapy, play therapy, psychodrama, role-playing, and psychotherapy social skills training are significantly underrepresented in peer-reviewed publications. Not unexpectedly, drama

training are significantly underrepresented in peer-reviewed publications. Not unexpectedly, drama interventions fare even worse and rarely feature in the scholarly literature. This may be related to challenges associated with accurately defining and delineating the scope of practice in this field but also possibly to the nature of engagement with the art form, which until relatively recently did not have a strong tradition in empirical research (Donovan 2011). However, drama interventions have

not have a strong tradition in empirical research (Donovan 2011). However, drama interventions have recently begun to appear in the professional literature related to ASD (i.e., online websites, blogs, teaching manuals, magazines, and videos), which are designed to impact upon and disseminate practice. Notwithstanding criticisms about research in the area of social skills interventions, which has been beset by a lack of randomized control tests and claims that many studies lack rigorous

has been beset by a lack of randomized control tests and claims that many studies lack rigorous research designs to assess the effectiveness of interventions, generalization effects, and maintenance (Kaat and Lecavalier 2014), there has been a dearth of systematic research on drama interventions. Apart from a few small-scale case studies involving single subject or small-N design (Kempe and Tissot 2012; Corbett et al. 2011; Wilmer-Barbrook 2013; Pimpas 2013; Dunne 2009), the literature has been

2012; Corbett et al. 2011; Wilmer-Barbrook 2013; Pimpas 2013; Dunne 2009), the literature has been largely silent in this regard. This despite increased interest in drama-based treatment programs to ameliorate the symptoms of ASD in recent years and with them, the demand to use evidence-based interventions (EBI) (Livanis et al. 2013).

However, what has emerged positively from those studies undertaken in recent years is the degree of enjoyment, empowerment, and independence, which participants and their parents/carers have reported as a result of being part of social skills and drama interventions (Mandelberg et al. 2014; Loyd 2013a; Guli et al. 2013; Ramamoorthi and Nelson 2011). Notwithstanding the challenges associated with accurately validating changes and progress and indeed accessing experiences of this nature

with accurately validating changes and progress and indeed accessing experiences of this nature (Shaughnessy 2013), participants themselves have self-reported such changes and developments in their engagement with peers, their self-confidence, and self-esteem, reduction in anxiety, etc. (Trimingham 2013). Participant voice is not a new area in the field of inclusive education (Oliver 1992), and first-person perspectives of people with ASD are beginning to bring fresh insights to this area of

first-person perspectives of people with ASD are beginning to bring fresh insights to this area of research (Kirby et al. 2014). For example, Loyd’s (2013b) study of 10 young people with autism in a drama education intervention program argues for the active involvement of people with autism in research about them.

In a study involving a drama in education intervention with two girls with ASD in a special school setting with other students with moderate intellectual disabilities, Kempe and Tissot (2012) reported positive gains in participation in group work, language use, development of imagination and humor, and sustained engagement with a fictional character which led the participants into the practice of social skills that had relevance beyond the confines of the classroom. Trowsdale and Hayhow (2013)

social skills that had relevance beyond the confines of the classroom. Trowsdale and Hayhow (2013) report similar progress in their case study of one boy with ASD (in a larger sample of participants with learning disabilities) who demonstrated marked improvements in identifying and regulating his emotions, developing a playful relationship with another child, and enhancing his imaginative and creative abilities. Using mimetics and theater methodology, they record reductions in ritualized

creative abilities. Using mimetics and theater methodology, they record reductions in ritualized activities and positive developments of the case study on the child’s personal and social identity. Employing a similar methodology, researchers from Butler University (Loer 2012) engaged in a 10-week collaborative study with the Pathway School and People’s Light & Theater Company, involving eight adolescents in rehearsals of Mark Twain’s The Adventures of Tom Sawyer, in which repetition and

adolescents in rehearsals of Mark Twain’s The Adventures of Tom Sawyer, in which repetition and learning lines, mimicry, and exploration of emotions were key elements. Further eight students from the same school served as a control group. Participating students exhibited significant improvement in four behaviors: displaying appropriate emotions, offering help without prompting, controlling temper, and acknowledging the perspective of others. Corbett et al. (2011) identify close links between

and acknowledging the perspective of others. Corbett et al. (2011) identify close links between theater and modeling techniques, and in a 3-month pilot project involving the pairing of peer actors with participants with ASD, researchers noted some promising potential for social skills training in a nurturing and fun environment. Using a unique performance-based social skills curriculum called SDARI (Sociodramatic Affective-Relational Intervention) and employing affectively engaging

called SDARI (Sociodramatic Affective-Relational Intervention) and employing affectively engaging improvisation games and dramatic training adapted for people with ASD, Lerner et al. (2011) suggest that increased social assertion, improved ability to detect emotions in adult voices, and decreased social problems may be encouraged by participating in this drama-based intervention. In a recent meta-analysis of social skills interventions, Kaat and Lecavalier (2014) refer to the potential of

meta-analysis of social skills interventions, Kaat and Lecavalier (2014) refer to the potential of further investigating performance-based (specifically drama-based) interventions, such as those described above by Corbett et al. (2011) and Lerner’s SDARI (Lerner and Mikami 2012; Lerner et al. 2011).

In a counterpoint approach to mimesis, Shaughnessy (2013) describes a research project with 22 children called “Imagining Autism” which explored the potential of drama as an intervention to challenge the stereotypes surrounding ASD. The approach adopts a nonmimetic scenography requiring new modes of theatrical perception and demanding an active form of participatory spectatorship. In “Imagining Autism” (www.imaginingautism.org), participants recognized that they were performers and authors and

(www.imaginingautism.org), participants recognized that they were performers and authors and at liberty to improvise and play within a process-based contemporary performance. The studies cited above all relate to a work carried out with children and adolescents, but similar gains have been reported in projects with adults. In a study of 18 adults with ASD, participants referred to their attraction to theater-based interventions, such as improvisational theater classes, the writing of dramatic

to theater-based interventions, such as improvisational theater classes, the writing of dramatic scripts, participation in role-playing games and voice workshops, which most respondents described as allowing them an opportunity to practice social skills and reduce social anxiety. In the words of one respondent, “by doing [improvisational theater], you realize that it’s actually possible to be spontaneous, to just go with an impulse (laugh)” (Müller et al. 2008).

Preliminary evidence exists to support some degree of generalization of skills to settings outside of the drama intervention group, but a major limitation of the studies conducted is the small number of participants, which limits the generalizability of results.

Outcome Measurement Increasingly, drama therapists and drama facilitators are being asked to demonstrate the effectiveness of their work through evidence-based practice (EBP) and practiced-based evidence (PBE) (Dokter and Winn 2010) and to produce outcome measurements for their practice. Descriptive measures are no longer considered satisfactory on their own, and Jennings (2011) advocates the use of such assessment and evaluation measures as the PASAA technique (Play and Story Attachment

use of such assessment and evaluation measures as the PASAA technique (Play and Story Attachment Assessment), among others. The big challenge facing those who engage in drama interventions is to consolidate the relationship between research, impact, and evidence (Jones 2012). Despite the wider debate about the efficacy of double-blind randomized controlled trials (RCTs) which are regarded as the gold standard in the generation of knowledge, Zeisel (2011) argues that they are only one way of

gold standard in the generation of knowledge, Zeisel (2011) argues that they are only one way of representing knowledge and that there are other methodologies which contribute substantially to our knowledge of non-pharmacological interventions which need to be taken seriously. He includes in this list music, visual arts, film, drama, counseling, and storytelling and advocates that the most appropriate methodology is the one which best fits the research question. The challenge then for the field

methodology is the one which best fits the research question. The challenge then for the field of drama interventions is to grow its practice-based research and increase capacity in different ways, as is occurring in other creative interventions, such as music, arts, and dance therapy (Jones 2012).

A significant stumbling block may be the lack of assessment instruments capable of adequately measuring social skills across a variety of contexts. Standardized tests are typically inadequate in sensitivity measures to assess these skills. Casson (2004) notes that while clients and participants may evaluate a session as being fun or enjoyable, clinical effectiveness demands measurement in terms of behavioral change and adjustments to societal norms (Jones 2012). While it is undeniable that

of behavioral change and adjustments to societal norms (Jones 2012). While it is undeniable that more rigorous research designs and targeted evaluation of social skills are needed to determine the efficacy of drama interventions, a number of studies have relied on qualitative methodologies from the field of social sciences, which have yielded satisfactory results (Kempe and Tissot 2012; Trowsdale and Hayhow 2013). Most use instruments from play therapy and social communication interventions

and Hayhow 2013). Most use instruments from play therapy and social communication interventions (Wolfberg et al. 2012; Lerner et al. 2011; Corbett et al. 2011), with the most popular measures in drama therapy being the Strengths and Difficulties Questionnaire (SDQs), the CORE system (Clinical Outcomes for Routine Evaluation), Behavioral Summarized Evaluation, and Therapy Outcomes. More recently, PSYCHLOPS and PSYCHLOPS Kids have been successfully used with children with ASD as a reliable and

PSYCHLOPS and PSYCHLOPS Kids have been successfully used with children with ASD as a reliable and highly sensitive measure of change during psychotherapeutic drama interventions (Godfrey and Haythorne 2013).

Qualifications of Treatment Providers While there is currently no requirement for people who use drama interventions with people with ASD to be certified, the available evidence suggests that most are either trained actors or qualified elementary or high school teachers with experience of working in inclusive educational settings. Many have graduate qualifications in developmental psychology, drama, or theater in education, special education, autism studies, film and media studies,

drama, or theater in education, special education, autism studies, film and media studies, occupational therapy, speech and language therapy, and music and arts therapy. Guli et al. (2008) advocate for training not only in working with youth with ASD but also in understanding the specialized skills needed to facilitate drama interventions to achieve specific group and individual goals.

In contrast, drama therapy is a registered and licensed profession in the USA and UK. However, there is no state regulation currently in respect of drama or other arts therapies in many countries (see http://www.dramatherapy.net and http://www.ecarte.info). Drama therapy is a masters-level profession, with applicants having successfully pursued a bachelors degree in drama or a psychological health-related subject, with appropriate experience of working, paid or voluntarily, with people with

subject, with appropriate experience of working, paid or voluntarily, with people with specific needs, for example, mental ill health, learning disabilities, nursing assistant, support worker, and drama or theater work with people with specific needs. Course content typically covers such areas as psychology; drama, theater, and performance work; knowledge of related therapies such as art, music, dance/movement, and play; supervised drama therapy practice; personal therapy parallel with

music, dance/movement, and play; supervised drama therapy practice; personal therapy parallel with training; supervised internship; and work experience. Registered drama therapists follow a code of ethics and abide by the professional body’s regulations on fitness to practice, continuing professional development, and standards of proficiency.

Draw-a-Person Intellectual Ability Test for Children, Adolescents, and Adults  Driving Hazard Perception in ASD Synonyms Situation awareness Definition Driving hazard perception is the ability to identify potentially dangerous events on the roads. It is typically tested by presenting participants with a series of video clips containing driving hazards filmed from the point of view of a driver. Participants are asked to press a button whenever they see a hazard developing and their accuracy and

are asked to press a button whenever they see a hazard developing and their accuracy and reaction time in doing so is measured. Hazard perception testing is based on the premise that the earlier a developing hazard is perceived, the longer the driver has for making a response, such as steering out of the way or slowing down; and consequently, the less likely an accident will occur. In line with this, hazard perception reaction time as measured in video-based hazard perception tests has been

this, hazard perception reaction time as measured in video-based hazard perception tests has been found to predict drivers’ on-road accident involvement. In light of this, a hazard perception test of this nature is used as part of driver licensing procedures in addition to the on-road test in several countries including the UK, the Netherlands, and Australia.

Successful hazard perception frequently involves predicting the behavior of other road users. However, behavioral prediction has been reported as problematic for people with ASD (Zalla et al. 2010), raising the question of whether individuals with ASD have difficulty with hazard perception. Some research addressing this question has focused on individuals who have not yet started learning to drive to assess baseline levels of hazard perception skill, using the video-based testing methodology

to assess baseline levels of hazard perception skill, using the video-based testing methodology (Sheppard et al. 2010). Participants with ASD tended to be slower at responding to hazards than comparison individuals, and this appears to be due to those with ASD being slower in visually orienting to hazards within the driving scenes, perhaps due to less efficient search strategies (Sheppard et al. 2017). Non-drivers with ASD may also have poorer hazard perception accuracy (i.e., detect fewer

al. 2017). Non-drivers with ASD may also have poorer hazard perception accuracy (i.e., detect fewer hazards overall in such tests) than non-drivers without the condition, particularly when the hazard in question arises from the actions of a clearly visible person (Sheppard et al. 2010). This may relate to the well-documented difficulties attending to and processing dynamic social stimuli in ASD (e.g., Speer et al. 2007).

Research has also investigated hazard perception skill in experienced drivers with ASD using simulator driving, rather than a video-based hazard perception test (Bishop et al. 2017). In this context, the participant was not specifically asked to search for hazards but rather to complete a single simulator drive, during which several hazardous events were pre-programmed to occur at specific points. Hazard perception ability was indexed by measures of how the participant responded when the

points. Hazard perception ability was indexed by measures of how the participant responded when the hazardous events occurred – such as by braking or steering. Drivers without ASD responded faster to hazards that involved a clearly visible person than hazards which did not, while drivers with ASD did not show this effect. However, overall there were few differences between the groups in how they responded to the hazardous events, implying that those with ASD who do drive may have similar hazard

to the hazardous events, implying that those with ASD who do drive may have similar hazard perception abilities to drivers without ASD.

While current drivers with ASD demonstrate hazard perception skills commensurate with comparison individuals, the differences in hazard perception skill in non-drivers with ASD might indicate additional challenges in learning to drive for individuals with ASD – especially in countries where hazard perception testing forms a mandatory part of driver licensing. Future research should examine hazard perception in current learners with ASD to shed light on how hazard perception ability develops in

perception in current learners with ASD to shed light on how hazard perception ability develops in this population during driver tuition.

DSM-5 Synonyms Diagnosis Definition The Diagnostic and Statistical Manual (DSM), published by the American Psychiatric Association (APA), is widely used to diagnose psychopathology. The fifth edition of the DSM was published in May of 2013. The DSM-5 differs from its predecessor in that the manual is organized developmentally, beginning with disorders that are present early in life to disorders that are present later in life, rather than a multiaxial system. Autism spectrum disorder (ASD) is

that are present later in life, rather than a multiaxial system. Autism spectrum disorder (ASD) is in the category of neurodevelopmental disorders. In the previous version of the DSM, ASD was an umbrella term used to house five distinct disorders: autistic disorder, Asperger’s syndrome, childhood degenerative disorders, Rett’s disorder, and pervasive developmental disorder not otherwise specified. In the current addition, Rett’s disorder was completely removed, and the four remaining disorders

In the current addition, Rett’s disorder was completely removed, and the four remaining disorders collapsed into one ASD diagnosis. The rationale behind this change was that one single spectrum better exemplifies the symptoms, course, and treatment of the disorder. Additional changes included combining the socialization domain and the communication domain into one domain; the age of onset criterion was expanded to include early childhood in general, and the number of symptoms required to be met

was expanded to include early childhood in general, and the number of symptoms required to be met for diagnosis was made stricter.

To meet criteria for ASD, three of three criteria must be met in the social and communication deficits domain (i.e., nonverbal communication, peer relationships, and social reciprocity); two of four criteria must be met in the restricted and repetitive patterns of behavior, interest, and activities domain (i.e., stereotyped or repetitive movements, insistence on sameness, restricted or fixated interests, and hyper- or hyporeactivity to sensory input); symptoms must present early in the

interests, and hyper- or hyporeactivity to sensory input); symptoms must present early in the developmental period; and symptoms must cause clinically significant impairments. Diagnosis severity is indicated with levels: level one, “requiring support”; level two, “requiring substantial support”; and level three “requiring very substantial support.” Medical conditions, intellectual impairments, and language impairments are recorded as specifiers accompanying the disorder. Comorbid diagnoses

and language impairments are recorded as specifiers accompanying the disorder. Comorbid diagnoses which are not part of the ASD diagnostic criteria may be given along with the ASD diagnosis (e.g., ADHD, anxiety disorder, depression; APA 2013).

The changes to the ASD category of DSM-5 have been controversial and met with much resistance. Major concerns have been that the stricter criteria requirements will impact prevalence rates. Some researchers have estimated approximately 30–45 % of individuals currently diagnosed with an ASD will no longer meet criteria under the DSM-5 diagnosis, with those diagnosed with PDD-NOS most likely affected (Matson et al. 2012a, b; McPartland et al. 2012). Loss of diagnosis due to the diagnostic

affected (Matson et al. 2012a, b; McPartland et al. 2012). Loss of diagnosis due to the diagnostic criteria changes will have a significant impact on services and eligibility. To address this concern, DSM-5 makes note that any individuals with an existing diagnosis will not lose existing services if they do not meet the new diagnostic criteria.

DSM-5 and Autism Spectrum Disorder Definition The Diagnostic and Statistical Manual of Mental Disorders, fifth edition, outlines diagnostic criteria for accepted mental disorders and is used in the United States to provide diagnostic codes for treatment. With regard to autism, the current edition of the DSM states that ASD is characterized by persistent deficits in social communication and social interaction across multiple contexts as well as the presence of restricted and repetitive patterns

interaction across multiple contexts as well as the presence of restricted and repetitive patterns of behavior. Social communication deficits include deficits in social-emotional reciprocity, deficits in nonverbal communicative behaviors, and deficits in the development and maintenance of social relationships. Restricted and repetitive behaviors may include stereotyped motor movements, insistence on sameness, highly restricted interests, or hyper- or hyposensitivity to sensory input. The

on sameness, highly restricted interests, or hyper- or hyposensitivity to sensory input. The abovementioned symptoms must be present in the early developmental period in order to merit a diagnosis of ASD.

Historical Background The first descriptions of the symptoms now collectively known as autism spectrum disorder (ASD) were provided by Kanner (1943) and Asperger (1944). Kanner reported on 11 children who demonstrated an “inability to relate themselves” to others and an “extreme autistic aloneness,” as well as resistance to environmental change (p. 242). One year later, Asperger published a similar description of social isolation, though in a sample of individuals with substantially greater

description of social isolation, though in a sample of individuals with substantially greater verbal abilities and interests in highly specialized topics (1944). Subsequent research identified additional individuals with similar constellations of symptoms, separated autism from established disorders such as schizophrenia, and identified a strong genetic component to the disorder due in part to high rates of seizures in individuals with ASD.

As the constellation of symptoms associated with autism became increasingly distinct, researchers began to define its symptoms more clearly. Preliminary efforts to provide specific diagnostic criteria for what is now termed ASD included a definition provided by the National Society for Autistic Children in 1977. These criteria included disturbances in rate of development, abnormal responses to sensations, delayed speech and language, and abnormal ways of relating to people, objects, or events

delayed speech and language, and abnormal ways of relating to people, objects, or events (Ritvo and Freeman 1977). Autism was first included in the DSM with the publication of its third edition, which focused its criteria on “classic autism” and individuals with more severe impairments. Additionally, in order to qualify for a diagnosis, an individual was required to meet all specified criteria (APA 1980). Subsequent revisions introduced more developmentally oriented criteria and became more

(APA 1980). Subsequent revisions introduced more developmentally oriented criteria and became more inclusive for individuals without cognitive deficits.

Autism spectrum disorders changed again with the publication of DSM-IV-TR in 2000. These new criteria were instrumental in facilitating an explosion of research focused on autism spectrum disorders. Despite this virtue, however, these criteria were subject to some notable shortcomings. The category of pervasive developmental disorders included autistic disorder, Asperger’s disorder, and pervasive developmental disorder-not otherwise specified (APA 2000). These three diagnoses allowed for useful

developmental disorder-not otherwise specified (APA 2000). These three diagnoses allowed for useful distinctions among individuals with varying levels of impairment but also raised questions regarding differential diagnosis and whether “high-functioning autism,” Asperger’s disorder, and PDD-NOS were phenotypically distinct (South et al. 2005). Additionally, some evidence indicated that clinicians used the “not otherwise specified” diagnosis (PDD-NOS) too broadly and that this diagnosis became a

used the “not otherwise specified” diagnosis (PDD-NOS) too broadly and that this diagnosis became a catch-all term for symptoms approaching, but not sufficient for, a diagnosis of Asperger’s disorder or autistic disorder (Norbury 2014).

Current Knowledge The DSM-5 neurodevelopmental disorders workgroup aimed to address many of the noted shortcomings of DSM-IV-TR criteria (APA 2013). The most salient change eliminated the previous category of pervasive developmental disorders and eliminated diagnoses of Asperger’s disorder and PDD-NOS in favor of subsuming all autism diagnoses under the ASD label. Another notable difference was the reduction in symptom categories from three domains (i.e., social impairments, communication

was the reduction in symptom categories from three domains (i.e., social impairments, communication deficits, and restricted and repetitive behaviors) to two (i.e., social communication and restricted and repetitive behaviors). This change reflected acknowledgment by the workgroup that the distinction between the social and communication symptom domains was somewhat arbitrary and that both were reflective of core deficits attributable to autism (Lord and Jones 2012). Reducing the number of

reflective of core deficits attributable to autism (Lord and Jones 2012). Reducing the number of domains, and requiring that all three criteria within the social communication domain were met, greatly reduced the number of symptom combinations that could result in a diagnosis (Volkmar and Reichow 2013). Within the restricted and repetitive behaviors domain, an additional criterion regarding hyper- or hypo-reactivity to sensory stimuli was added. The final substantial change consisted of the

or hypo-reactivity to sensory stimuli was added. The final substantial change consisted of the addition of a severity specifier, in which individuals are classified as requiring very substantial support, requiring substantial support, or requiring support. These specifiers may provide a means of describing an individual and their needs with a greater level of detail given that new criteria render it possible for individuals of widely varying levels of symptoms and cognitive ability to receive

it possible for individuals of widely varying levels of symptoms and cognitive ability to receive the same diagnosis. The extent to which these severity specifiers will affect research or clinical work remains unclear. Members of the neurodevelopmental disorders workgroup conducted a detailed analysis of sensitivity and specificity of the finalized new criteria and found compelling evidence to suggest that the vast majority of individuals with DSM-IV-TR PDD diagnoses would retain them under the

that the vast majority of individuals with DSM-IV-TR PDD diagnoses would retain them under the new criteria and that specificity improved markedly (Huerta et al. 2012).

As published, DSM-5 criteria offered advantages to the old classification system and accomplished stated goals of the neurodevelopmental disorders workgroup. However, a series of studies conducted in the period leading up to and immediately following publication suggested that the new criteria may be problematic in a number of ways. Among the most prominent of these examinations consisted of reevaluation of data collected on nearly 1000 individuals during the field trial for development of

reevaluation of data collected on nearly 1000 individuals during the field trial for development of DSM-IV criteria. Clinicians reevaluated each case according to the proposed DSM-5 criteria; results suggested that only 60% of individuals classified with ASD under DSM-IV-TR criteria would receive diagnosis when assessed according to proposed DSM-5 criteria (McPartland et al. 2012). Reported specificity, however (i.e., correct identification of individuals who do not have ASD), was excellent

however (i.e., correct identification of individuals who do not have ASD), was excellent (95%). A number of additional studies were published demonstrating similar effects of the proposed new criteria. Mattila et al. (2011) found a similarly low sensitivity of new criteria in conducting an epidemiological study of children in Finland.

Results of both of these studies also suggested that certain subsets of the ASD population would be disproportionately affected by these changes. Individuals diagnosed with Asperger’s disorder or PDD-NOS under DSM-IV-TR criteria as well as individuals without intellectual disability (i.e., IQ >70) were more likely to fail to meet diagnostic criteria per DSM-5 than those with autistic disorder or intellectual disability. Other studies found similar reductions in the number of overall individuals

disability. Other studies found similar reductions in the number of overall individuals diagnosed using the new criteria (Matson et al. 2012b). Analyses of samples of individuals meeting versus not meeting DSM-5 criteria suggested that individuals meeting DSM-5 criteria represented a more impaired population with higher levels of core symptoms than those meeting DSM-IV-TR, but not DSM-5, criteria (Matson et al. 2012a).

Reviews and meta-analyses of studies exploring changes in rates of ASD diagnoses based on DSM-5 criteria presented substantial evidence that considerable numbers of individuals would fail to qualify for diagnoses under new criteria and that individuals with high IQs and those previously diagnosed with Asperger’s or PDD-NOS would be disproportionately affected (Kulage et al. 2014; Sturmey and Dalfern 2014; Smith et al. 2015). This evidence, however, must be considered along with a number of

Dalfern 2014; Smith et al. 2015). This evidence, however, must be considered along with a number of notable limitations. The majority of the studies described above relied on retrospective data, collected prior to the development and proposal of DSM-5 criteria. As a result, available data did not allow for comprehensive assessment by new criteria, potentially affecting reported sensitivity and specificity.

Publication of the studies described above resulted in considerable concern within the ASD research community. Changes in the set of symptoms considered under the ASD label created a number of potential difficulties with the application of criteria, both in research and clinical practice. If the population of individuals characterized as having ASD under DSM-5 differed substantially from those diagnosed with a disorder under the ASD umbrella in DSM-IV-TR, prior research conducted on the latter

with a disorder under the ASD umbrella in DSM-IV-TR, prior research conducted on the latter group might have limited application to individuals with a different constellation of symptoms (i.e., generally more severely affected). Questions regarding application of the new criteria also arose with regard to clinical practice and access to services. Prior to official publication, the proposed criteria made it theoretically possible for an individual diagnosed with autistic disorder, Asperger’s, or

made it theoretically possible for an individual diagnosed with autistic disorder, Asperger’s, or PDD-NOS to fail to qualify for a diagnosis under the new criteria, potentially limiting that individual’s access to treatment and support services. As a result, a stipulation was added to DSM-5 criteria stating that any individual qualifying for a diagnosis under DSM-IV-TR would automatically be assigned the label of ASD under DSM-5, regardless of whether or not the new criteria were met. While

the label of ASD under DSM-5, regardless of whether or not the new criteria were met. While providing a single label for all autism spectrum disorders clarified distinctions among diagnostic subtypes and increased parsimony in the ASD research community, the effects of these terminology changes on individuals with ASD and their families may be considerable. First, families who have not kept abreast of changes within the research community were likely unaware that the label assigned to a given

of changes within the research community were likely unaware that the label assigned to a given individual may have changed with the publication of DSM-5 (e.g., an individual with Asperger’s now technically meriting a diagnosis of ASD). This offers the potential for confusion when families seek assessment or treatment, as providers are likely to have shifted in their usage of terminology with the publication of the new criteria, while families continue to use DSM-IV-TR labels. Second, and

the publication of the new criteria, while families continue to use DSM-IV-TR labels. Second, and perhaps more importantly, new terminology may be unwelcome or even offensive to communities of individuals who identified strongly with previously used labels. Specifically, some individuals with Asperger’s have demonstrated a strong affiliation with that term and its variants. This term and others have been used by the neurodiversity movement, which advocates against pathologizing ASD, especially

been used by the neurodiversity movement, which advocates against pathologizing ASD, especially by the scientific community; instead, they aim to characterize ASD as a different manner of thinking and not as a “disorder” per se (Robertson and Ne’eman 2008).

Another substantial change to the neurodevelopmental disorders section of the DSM in its fifth edition was the addition of social (Pragmatic) communication disorder (SCD). SCD is closely related to ASD in that its diagnosis requires deficits in the use of communication for social purposes, including social pragmatics and turn-taking (APA 2013). However, notably absent from diagnostic criteria is the presence of restricted and repetitive behaviors. The SCD diagnosis should be considered here as

the presence of restricted and repetitive behaviors. The SCD diagnosis should be considered here as a new, independent neurodevelopmental disorder with a unique phenotype and associated symptoms. However, this new diagnosis should also be viewed within the context of the debate surrounding new DSM criteria. Some researchers have suggested that SCD, with a symptom set more limited than ASD, will occupy the same role in diagnosis that PDD-NOS did in DSM-IV-TR (i.e., essentially a milder form of

occupy the same role in diagnosis that PDD-NOS did in DSM-IV-TR (i.e., essentially a milder form of autism). In this manner, the SCD diagnosis would constitute somewhat of a catch-all, and its validity could be called into question. Others have proposed that SCD should be considered in relation to the substantial number of individuals who may “lose” diagnoses in the transition from DSM-IV-TR to DSM-5. The possibility exists that individuals no longer meeting full criteria for ASD would be found

The possibility exists that individuals no longer meeting full criteria for ASD would be found not to meet criteria only in the restricted and repetitive behavior domain, and thus these individuals would be diagnosed with SCD. A final point to be made regarding SCD is that there exists some question regarding whether or not SCD can be considered a distinct phenotype, that is, whether it is possible that social pragmatic communication deficits appear in the absence of accompanying restricted and

that social pragmatic communication deficits appear in the absence of accompanying restricted and repetitive behaviors (Norbury 2014). As this diagnosis becomes more solidified with their application in research and clinical practice, the field will approach answers to these questions, as well as begin to identify appropriate services and interventions for individuals in this population.

Future Directions Despite the controversy and limitations described above, DSM-5 criteria for ASD are, and will remain, the current valid and accepted criteria for ASD. Despite the increasing period of time that has passed since the publication of the new criteria, researchers have continued to examine the application of the criteria in new or different settings and question their utility (e.g., Bent et al. 2017). Although there exists substantial evidence to support modification of the

(e.g., Bent et al. 2017). Although there exists substantial evidence to support modification of the current criteria to remedy some of the documented shortcomings of DSM-5 criteria, changes appear unlikely. Criteria published in previous versions of the DSM have also resulted in disagreement among the scientific community, and disputes arising from their publication did not serve to limit progress in ASD research in any substantial way; DSM-5 criteria are not likely to represent a unique case.

Although future versions of the DSM may improve upon current criteria and allow for more accurate, sensitive, and specific diagnoses of ASD at earlier ages, the inherent limitations of behavioral criteria in diagnosing a neurodevelopmental disorder suggest that the ultimate goal must be a reliable and valid biomarker that can be used to diagnose ASD, even prior to the emergence of behavioral symptoms. A number of potential biological indicators predictive of diagnosis of ASD have been

symptoms. A number of potential biological indicators predictive of diagnosis of ASD have been explored. Identification of biomarkers would be beneficial as a means of objective diagnosis but also in the ability of researchers to objectively measure treatment response. Neuroimaging techniques such as fMRI have also been considered as a potential means of making more objective diagnoses. The use of biomarkers is an emerging research area, with ongoing multisite trials contributing to significant

biomarkers is an emerging research area, with ongoing multisite trials contributing to significant advances. Recent evidence suggests that hyperexpansion of the cortical surface area in infants between 6 and 12 months of age was associated ASD diagnoses later in life (Hazlett et al. 2017). This and other emerging evidence suggests that the use of biomarkers for diagnosis offers considerable advantages over current behavioral criteria. Despite these advances, identification of clear and

advantages over current behavioral criteria. Despite these advances, identification of clear and objective biomarkers that could be easily applied (i.e., low-cost and widely available) is likely too distant to consider as the next step in diagnosis of ASD. Future revisions of DSM-5 will likely update diagnostic criteria to remain current with advances in research providing a clearer conceptualization of symptoms that constitute ASD.

DSM-III Definition The 3rd edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-III) appeared in 1980 and proved to be a landmark in the development of psychiatric taxonomy.

Historical Background Beginning in the 1800s, attempts had begun to be made in categorizing and studying rates of various disorders (including psychiatric disorders) in the USA and other countries. For psychiatry, an attempt was made to codify a specific approach in the early 1900s and was subsequently revised. These early attempts included only a small of categories. However, following World War II, a concern for providing mental health services in a more systematic fashion (and including to

II, a concern for providing mental health services in a more systematic fashion (and including to the many returning veterans) provided a stimulus for the first edition of DSM. This effort reflected both a growing awareness of the mental health issues in the military in the USA and the stimulus provided by a revision (the 6th edition) of the International Statistical Classification of Diseases (ICD) which recognized mental disorders for the first time. A second edition was undertaken in the

(ICD) which recognized mental disorders for the first time. A second edition was undertaken in the 1960s, and DSM-II recognized over 180 disorders. Both the first and second editions of DSM adopted a specific theoretical (e.g., psychodynamic) framework. Developments more broadly in the field (particularly at Washington University in St. Louis and subsequently at Columbia University) led to a focus on less theoretical and more descriptive definitions useful for research. This research diagnostic

on less theoretical and more descriptive definitions useful for research. This research diagnostic criteria approach (Spitzer et al. 1978) proved particularly helpful, and the decision was made for the third edition of DSM to move toward such an approach as well as greater convergence with the ICD (Spitzer et al. 1978).

Current Knowledge Changes were made in DSM-III based on a series of consideration including issues of reliability and results of “field trials.” By the time it was published in the 1980s, DSM-III included over 260 categories and quickly proved invaluable in transforming research in psychiatry. Although not without controversy (e.g., around use of terms like neurosis and the approach to diagnosis of sexual orientation problems) for childhood-onset disorders, DSM-III had several important

of sexual orientation problems) for childhood-onset disorders, DSM-III had several important advantages. It recognized disorders like autism for the first time (previously the term childhood schizophrenia was the only “official” diagnosis available) based on a series of papers in the 1970s demonstrating the unique diagnostic features and course of children with autism (Kolvin 1971; Rutter 1972). Autism was included along with several other disorders in a newly class of conditions – the

1972). Autism was included along with several other disorders in a newly class of conditions – the pervasive developmental disorders (PDD). Disorders recognized within this class included infantile autism, residual infantile autism (for individuals who once met full criteria for the infantile form of the disorder), childhood-onset pervasive developmental disorder (COPDD) (to encompass the rare individuals who developed autism or something very like it after several years of normal development),

who developed autism or something very like it after several years of normal development), and a residual COPDD category along with a new subthreshold condition atypical PDD. The class name pervasive developmental disorder was used to refer to what today might more usually be termed autism spectrum disorders. The PDD term was meant to convey that a range of functions were impacted, although the term itself was widely debated (e.g., see Gillberg 1991; Volkmar and Cohen 1991b).

Apart from the explicit recognition of autism as a specific and valid diagnostic category, the DSM-III had several important advantages for childhood disorders in general including the use of multiple axes of diagnosis (psychiatric, developmental, medical, and psychosocial stressors and overall adaptive functioning). This multiple axial approach proved especially helpful for child psychiatry (Rutter et al. 1975). The use of more detailed and specific definitions without a specific theoretical

et al. 1975). The use of more detailed and specific definitions without a specific theoretical bias also enhanced reliability. The DSM-III system also had some disadvantages for autism. The proposed was based largely on Rutter’s modification (Rutter 1978) of Kanner’s (1943) original description, but in the attempt to make this more operational, the monothetic definition adopted focused on what might now be thought of as more prototypical (“classical”) autism, i.e., more “infantile” autism

might now be thought of as more prototypical (“classical”) autism, i.e., more “infantile” autism (consistent with the name chosen). For example, the social criterion emphasized a pervasive lack of social responsiveness. This effectively meant that for many children who developed (to varying degrees) greater social skills, the clinician was technically forced to use the “residual” autism category. A problem with this lack of developmental orientation was the implicit implication that somehow

A problem with this lack of developmental orientation was the implicit implication that somehow their problems were less severe. Similarly, the rationale for COPDD as a category was to account for the small number of children who had developed an autistic-like disorder at a somewhat later point in early childhood (Kolvin 1971); COPDD was not, however, meant to be simply with Heller’s syndrome (disintegrative psychosis) (Heller 1908, 1930) as it was assumed, probably incorrectly, that the latter

psychosis) (Heller 1908, 1930) as it was assumed, probably incorrectly, that the latter was invariably a result of a general medical/neurological process (see Volkmar and Rutter 1995). Similarly, the term atypical PDD was used as a placeholder for the subthreshold condition (“autistic-like” or now “autism spectrum disorder”) for difficulties that appeared to be best thought of as occurring within the overarching PDD class but meeting criteria for infantile autism or COPDD. Unfortunately, this

the overarching PDD class but meeting criteria for infantile autism or COPDD. Unfortunately, this term had its own prior history in that it was suggestive of Rank’s earlier concept of atypical personality (Rank 1949; Rank and MacNaughton 1949). Another problem arose because of the recognition that autism was not a kind of schizophrenia and the adoption of an exclusionary rule for autism and schizophrenia; on the other hand, one might reasonably argue that adolescents and adults with autism are

on the other hand, one might reasonably argue that adolescents and adults with autism are not necessarily protected from this condition in later life – at rates presumably at least comparable to those of the general population (Volkmar and Cohen 1991b). Finally the multiaxial placement of autism and related disorders was somewhat controversial. Autism and mental retardation (intellectual disabilities) were by convention made axis I diagnosis, while the specific developmental disorders were

were by convention made axis I diagnosis, while the specific developmental disorders were placed on axis II of the multiaxial system. The problems with DSM-III were widely recognized, and a major revision was undertaken for DSM-III-R (American Psychiatric Association 1980, 1987).

DSM-III-R Definition The successor to DSM-III (appearing in 1987) work on this edition began shortly after DSM-III (1980) had appeared. Originally viewed as a small-scale revision, major changes were made in several categories including autism and related conditions (see Waterhouse et al. 1993). The definition of autistic disorder (name changed from infantile autism in DSM-III) was more consistent with the views of Lorna Wing and her colleagues (e.g., see Wing 1981) who adopted a somewhat

with the views of Lorna Wing and her colleagues (e.g., see Wing 1981) who adopted a somewhat broader diagnostic view of the concept. This revision also put much greater weight on developmental changes discarding the earlier concept of “residual” infantile autism and replacing it with a single category with criteria applicable to the entire range of functioning over age and developmental level. Consistent with the previous definition, the three major domains of dysfunction (social,

level. Consistent with the previous definition, the three major domains of dysfunction (social, communicative, and restricted interests/behaviors) were included, although early age of onset was no longer required. Final scoring rules were developed based on a field trial (Spitzer and Siegel 1990) with 16 criteria; a diagnosis of autism required that an individual exhibited at least 8 of these features (with a specified distribution over the 3 areas). The problematic earlier concept of

these features (with a specified distribution over the 3 areas). The problematic earlier concept of childhood-onset pervasive developmental disorder (COPDD) was dropped, and throughout the manual, the earlier term “atypical” was replaced with “not otherwise specified” (in large part because of the potential confusion with an earlier diagnostic concept – atypical personality development; see (Volkmar and Klin 2005)). The greater developmental orientation of the approach was welcomed but also

and Klin 2005)). The greater developmental orientation of the approach was welcomed but also appeared to come at a price. Several reports suggested high rates of false positives – particularly relative to more intellectually disabled individuals; this led to an apparent overdiagnosis of autism in more intellectually handicapped individuals while also diverting attention from more cognitively able persons. Additional problems included a complex and detailed criteria set with inclusion of

able persons. Additional problems included a complex and detailed criteria set with inclusion of examples within criteria (thus tending to “reify” the examples as features that should be present). The changes introduced complicated interpretation of previous research and were particularly acute relative to pending changes in the ICD (see Volkmar and Klin 2005; Volkmar et al. 1992).

DSM-IV Definition The fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual was published in 1994 with a subsequent text revision published in 2000. The publication of DSM-IV followed several years of preparation. For autism and related disorders, the definitions proposed were, for the first time, convergent with the International Classification of Diseases 10th Edition (ICD-10). The fourth edition marked some important changes from its predecessors while

10th Edition (ICD-10). The fourth edition marked some important changes from its predecessors while maintaining much in the way of historical continuity.

Historical Background Preparations for the fourth edition of DSM began shortly after DSM-III-R (APA 1987) due, in part, to the pending revision of ICD-10, and this edition appeared partly due to the pending changes in the ICD-10. The intention was to base the revision on research and with consideration of relevant issues such as clinical utility, reliability, and descriptive validity of categories and the issue of coordination with ICD-10 (WHO 1994). As part of this process, a series of

and the issue of coordination with ICD-10 (WHO 1994). As part of this process, a series of literature reviews were conducted with emphasis on categories “new” to DSM. On balance, these reviews suggested the potential usefulness of including categories in addition to autism within the overarching pervasive developmental disorder (PDD) group (see Volkmar and Klin (2005)) and also supported the desire for compatibility with ICD-10. As part of this process, a series of data reanalyses that were

for compatibility with ICD-10. As part of this process, a series of data reanalyses that were undertaken focused on autism, and these suggested the DSM-III-R definition to be overly broad (Volkmar et al. 1992). Other issues identified included the inclusion (or not) of early age of onset as an essential feature and the variability of sensitivity/specificity in relation to IQ and other variables, and to address these concerns, a large, international field trial was undertaken in conjunction with

to address these concerns, a large, international field trial was undertaken in conjunction with ICD-10.

Current Knowledge The DSM-IV Field Trial The final DSM-IV definition was based on the results of the DSM-IV field trial which included 21 sites from around the world, over 100 raters, and nearly 1,000 cases (Volkmar et al. 1994). Cases were sometimes rated more than once (for reliability), and other issues (e.g., rater experience) were addressed. In general, cases were rated as seen over the course of a year but with some supplementation of previously seen cases for certain issues (e.g.,

course of a year but with some supplementation of previously seen cases for certain issues (e.g., children with “late-onset” autism). Cases could be included if the clinician believed autism to reasonably be part of the differential diagnosis. Multiple sources of information (assessment, history) were available to the raters who judged the quality of data available to them good or excellent about 75% of the time. A standard coding system was used with information on the case and rater as well

75% of the time. A standard coding system was used with information on the case and rater as well as ratings of various diagnostic criteria. The DSM-III approach was noted to be developmentally less sensitive than DSM-III-R, although that system appeared to overdiagnose autism in individuals with more severe intellectual handicap (i.e., relative to clinician judgment). The ICD-10 draft approach appeared more reasonable although overly detailed. Reliability of criteria was generally good with

appeared more reasonable although overly detailed. Reliability of criteria was generally good with clinical diagnosis also noted to have excellent reliability for more experienced clinicians (Klin et al. 2000). A series of analyses suggested that a modification of the draft ICD-10 approach could be adopted with reasonable sensitivity and specificity and good coverage over the IQ range.

Although not primarily focused on disorders other than autism, the field trial also provided data regarding the inclusion and definition of Asperger’s disorder, Rett’s disorder, and childhood disintegrative disorder. The final DSM-IV definition had good sensitivity and specificity over the IQ range. Diagnostic criteria adopted were essentially the same as in ICD-10 (see Table 1). At least six criteria had to be rated positive for a diagnosis of autism with at least two of these from the

six criteria had to be rated positive for a diagnosis of autism with at least two of these from the “social” category (this was consistent with Kenner’s original view of autism and also with a series of data analyses that confirmed the importance of social features). At least one feature must be present from the other two groups (impaired communication/play and restricted interests). Onset before age 3 was also specified. The inclusion of various condition as well as autism and “subthreshold

age 3 was also specified. The inclusion of various condition as well as autism and “subthreshold autism” was a major change from DSM-III-R. Although the substantive work on these other conditions was less advanced than that for autism, there appeared to be sufficient data for their inclusion; this further enhanced compatibility with ICD-10. Convergence of the final ICD-10 and DSM-IV definitions of autism represented a major shift (i.e., with the same system being used around the world) and

of autism represented a major shift (i.e., with the same system being used around the world) and facilitated subsequent research and clinical work as reflected, in part, in the explosion of work in the area over the subsequent decade. These criteria are provided in Table 1.

| Childhood autism (F84.0) | |---| | (A) Abnormal or impaired development is evident before the age of 3 years in at least one of the following areas: |
| 1. Receptive or expressive language as used in social communication | | 2. The development of selective social attachments or of reciprocal social interaction |

| 3. Functional or symbolic play | | (B) A total of at least six symptoms from (1), (2), and (3) must be present, with at least two from (1) and at least one from each of (2) and (3) |
| 1. Qualitative impairments in social interaction are manifest in at least two of the following areas: |
| (a) Failure adequately to use eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction |

| (b) Failure to develop (in a manner appropriate to mental age, and despite ample opportunities) peer relationships that involve a mutual sharing of interests, activities, and emotions |
| (c) Lack of socio-emotional reciprocity as shown by an impaired or deviant response to other people’s emotions; or lack of modulation of behavior according to social context; or a weak integration of social, emotional, and communicative behaviors |

| (d) Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., a lack of showing, bringing, or pointing out to other people objects of interest to the individual) |
| 2. Qualitative abnormalities communication as manifest in at least one of the following areas: |

| 2. Qualitative abnormalities communication as manifest in at least one of the following areas: |
| (a) Delay in or total lack of development of spoken language that is not accompanied by an attempt to compensate through the use of gestures or mime as an alternative mode of communication (often preceded by a lack of communicative babbling) |

| (b) Relative failure to initiate or sustain conversational interchange (at whatever level of language skill is present), in which there is reciprocal responsiveness to the communications of the other person |
| (c) Stereotyped and repetitive use of language or idiosyncratic use of words or phrases |
| (d) Lack of varied spontaneous make-believe play or (when young) social imitative play |

| (d) Lack of varied spontaneous make-believe play or (when young) social imitative play |
| 3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities are manifested in at least one of the following: |

| (a) An encompassing preoccupation with one or more stereotyped and restricted patterns of interest that are abnormal in content or focus, or one or more interests that are abnormal in their intensity and circumscribed nature though not in their content or focus |
| (b) Apparently compulsive adherence to specific, nonfunctional routines or rituals |
| (c) Stereotyped and repetitive motor mannerisms that involve either hand or finger flapping or twisting or complex whole-body movements |

| (d) Preoccupations with part objects or nonfunctional elements of play materials (such as their odor, the feel of their surface, or the noise or vibration they generate) |

| (C) The clinical picture is not attributable to the other varieties of pervasive developmental disorders; specific development disorder of receptive language (F80.2) with secondary socio-emotional problems’ reactive attachment disorder (F94.1) or disinhibited attachment disorder (F94.2); mental retardation (F70-F72) with some associated emotional or behavioral disorders; schizophrenia (F20) of unusually early onset; and Rett’s syndrome (F84.12) |

| F84.1 Atypical autism | | A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfill all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years, and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and

required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behavior) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviors required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of

diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. |

| F84.1 Atypical autism | | (A) Abnormal or impaired development is evident at or after the age of 3 years (criteria as for autism except for age of manifestation) |
| (B) There are qualitative abnormalities in reciprocal social interaction or in communication, or restricted, repetitive, and stereotyped patterns of behavior, interests, and activities (criteria as for autism except that it is unnecessary to meet the criteria for number of areas of abnormality) |

| (C) The disorder does not meet the diagnostic criteria for autism (F84.0). Autism may be atypical in either age of onset (F84.10) or symptomatology (F84.11); the two types are differentiated with a fifth character for research purposes. Syndromes that are typical in both respects should be coded F84.12 |
| F84.10 Atypicality in age of onset | | (A) The disorder does not meet criterion A for autism (F84.0); that is, abnormal or impaired development is evident only at or after age 3 years |

| (B) The disorder meets criteria B and C for autism (F84.0) | | F84.11 Atypicality in symptomatology | | (A) The disorder meets criterion A for autism (F84.0); that is, abnormal or impaired development is evident before age 3 years |

| (B) There are qualitative abnormalities in reciprocal social interactions or in communication, or restricted, repetitive, and stereotyped patterns of behavior, interests, and activities (criteria as for autism except that it is unnecessary to meet the criteria for number of areas of abnormality) |

| (C) The disorder meets criterion C for autism (F84.0) | | (D) The disorder does not fully meet criterion B for autism (F84.0) | | F84.12 Atypicality in both age of onset and symptomatology | | (A) The disorder does not meet criterion A for autism (F84.0); that is, abnormal or impaired development is evident only at or after age 3 years |

| (B) There are qualitative abnormalities in reciprocal social interactions or in communication, or restricted, repetitive, and stereotyped patterns of behavior, interests, and activities (criteria as for autism except that it is unnecessary to meet the criteria for number of areas of abnormality) |

| (C) The disorder meets criterion C for autism (F84.0) | | (D) The disorder does not fully meet criterion B for autism (F84.0) |  Future Directions At the time of this writing, preparation for DSM-V was underway with the two major preliminary proposals suggesting a change of the class of disorder to autism spectrum disorder and collapsing the various disorders currently listed in DSM-IV within one overarching disorder type.

DSM-IV Field Trial Definition The DSM-IV field trial for autism (Volkmar et al. 1994) was an international effort with the goal of establishing a definition with a reasonable balance of sensitivity and specificity that could be used to facilitate both clinical work and research. In contrast to previous DSM definitions of autism, this effort was done in conjunction with the ICD-10 revision 21 sites and 125 raters participated from around the world.

Historical Background The DSM-IV field trial arose as a result of concerns about the definition of autism adopted in DSM-III and DSM-III-R. For the latter definition, a small field trial had been conducted but suffered from some deficiencies. Several published papers suggested that while the DSM-III-R definition was more developmental in nature, it also appeared to be more likely to give an autism diagnosis to individuals with greater levels of intellectual disability.

Current Knowledge This field trial followed a period of considerable work including targeted literature reviews and data reanalyses (e.g., Frances et al. 1991; Mayes et al. 1993; Szatmari 1991, 1992a, b; Tsai 1992; Volkmar 1991, 1992; Volkmar et al. 1992a, b). As part of the field trial, 21 sites and 125 raters participated. Each site had some clinical program for individuals with autism and raters with a range of experience and professional backgrounds; about half the rates report relatively

with a range of experience and professional backgrounds; about half the rates report relatively extensive experience allowing for comparison of issues of reliability and clinical utility in both more and less experienced clinicians. Over the course of a year, nearly 1,000 cases were submitted (with about 10% of cases rated by more than 1 evaluator). In general, the preference was that bases currently being seen be provided (i.e., rather than ratings based on past experience), and by design, 5

being seen be provided (i.e., rather than ratings based on past experience), and by design, 5 of the participating sites contributed about 100 consecutive cases. To be included, the case had to exhibit difficulties in which autism was a reasonable part of the differential diagnosis. Smaller groups of cases were specifically solicited to identify potential gaps relative to much less frequent conditions (e.g., Rett’s and childhood disintegrative disorders). However, consecutive cases constituted

(e.g., Rett’s and childhood disintegrative disorders). However, consecutive cases constituted the bulk of the sample. Typically multiple sources of information were available (e.g., parents, past records, as well as current assessment), and raters indicated that in the majority (75%) of cases, the information available was good or excellent. A standard system of coding was created for each deidentified case rating including information on the individual being examined (age, IQ, communicative

case rating including information on the individual being examined (age, IQ, communicative ability, educational placement), basic information on the evaluator(s), and explicit ratings of diagnostic criteria both from previous (DSM-III, III-R) and potential new criteria. The evaluator was also asked to provide his/her best judgment of clinical diagnosis – the latter serving as the “gold standard” against which comparisons would then be made. The rating form also provided possible criteria for

against which comparisons would then be made. The rating form also provided possible criteria for Asperger’s syndrome, Rett’s syndrome, and childhood disintegrative disorder, based on the draft ICD-10 definitions.

Sample information is presented in Table 1. Clinicians’ primary diagnosis of the “nonautistic” PDD cases included Rett’s syndrome (13 cases), childhood disintegrative disorder (16 cases), Asperger’s syndrome (48 cases), and PDD-NOS (116 cases) or atypical autism (47 cases) (the latter group was included as possible clinical diagnosis given the ICD-10 draft inclusion of such a category which, essentially, referred to “subthreshold” autism or autism that was atypical in somewhat – cases that in

referred to “subthreshold” autism or autism that was atypical in somewhat – cases that in US terminology would have been said to have PDD-NOS). In comparison (nomad), cases with primary clinical diagnoses included mental retardation (N = 132), language disorder (N = 88 cases), schizophrenia of childhood onset (N = 9), and other or mixed developmental disorders (N = 54).

A series of cases were addressed in a range of different analyses, and in addition to the main report of the field trial (Volkmar et al. 1994), many of these analyses were published in their own right. Consistent with previous reports, it appeared that the DSM-III approach was insufficiently developmental and overly stringent, whereas the DSM-III-R erred on the site of overdiagnosis of autism associated with more severe intellectual deficiency. An explicit goal for the development of final

associated with more severe intellectual deficiency. An explicit goal for the development of final criteria set was that the final criteria for autistic disorder should work reasonably well over the entire range of IQ. A result is more consistent with the much more detailed ICD-10 (research) draft definition. These results are presented in Table 2.

| DSM-IV autistic disorder field trial group characteristics | |---|---|---|---| | Clinically autistic (N = 454) | Other PDDs (N = 240) | Non-PDD (N = 283) | | Sex ratio (M/F) | 4.49:1 | 3.71:1 | 2.29:1 | | % mute | 54% | 35% | 33% | | Age | 8.99 | 9.68 | 9.72 | | IQ | 58.1 | 77.2 | 66.9 | | Note: Cases grouped by clinical diagnosis | | Diagnoses of the “other PDD” cases included: Rett’s syndrome (13 cases), childhood disintegrative disorder (16 cases), Asperger syndrome (48 cases), PDD-NOS

(13 cases), childhood disintegrative disorder (16 cases), Asperger syndrome (48 cases), PDD-NOS (116 cases), and atypical autism (47 cases) |

| Diagnoses of the non-PDD cases included mental retardation (132 cases), language disorder (88 cases), childhood schizophrenia (9 cases), and other disorders (54 cases) |

| Sensitivity/specificity by IQ level **Early Intensive Behavioral Intervention (EIBI)**  **Definition** Early intensive behavioral intervention (EIBI) is a treatment approach that is based upon the principles of applied behavior analysis (ABA) and the research of Ivar Lovaas and colleagues at the UCLA Young Autism Project. The EIBI approach has been extensively studied and actively debated in the scientific literature, popular media, and policy arena.

**Historical Background** Developed by Lovaas and colleagues across several years of research and development at the University of California–Los Angeles, the EIBI approach has been extensively studied and actively debated in the scientific literature, popular media, and policy arena. Influenced by theories of learning and motivation, practitioners of EIBI refer to it as “the science of teaching.”

**Rationale or Underlying Theory** Applied behavior analysis is the overarching philosophy underlying EIBI. Integrating principles from learning theory, operant conditioning, behavioral economics, and motivational theory, proponents of EIBI value the power of changing aspects of the teaching context in order to promote child gains. By providing systematic, direct instruction in an intensive manner (i.e., 30–40 h per week, 1:1 with an adult), proponents of EIBI suggest that young children with

(i.e., 30–40 h per week, 1:1 with an adult), proponents of EIBI suggest that young children with autism can improve significantly.

**Treatment Participants** Early intensive behavioral intervention (EIBI) is a treatment approach that is thought to benefit children with autism who are younger than 5 years of age. Developers of the intervention emphasize the importance of beginning when a child is as young as possible, hopefully younger than 3 1/2 years. There is some evidence that children who are more intellectually competent respond best to EIBI.

**Treatment Procedures** Based upon the principles of applied behavior analysis (ABA), an EIBI program usually includes these characteristics: (1) active engagement of the child for 40 + h per week in (2) planful intervention, (3) delivered primarily in direct, 1:1 child-adult instruction (4) with specific individual goals, (5) carefully operationalized instructional objectives and procedures, and a (6) data collection system to promote objective observation and (7) analysis of a child’s

and a (6) data collection system to promote objective observation and (7) analysis of a child’s behavioral responses to different aspects of instruction. (8) Teaching strategies are then dynamically revised based upon this analysis, (9) implemented consistently across providers, and (10) evaluated again for effectiveness by monitoring the child’s trajectory of skill acquisition. The built-in evaluation system enables families and providers to make dynamic decisions about how and where to modify

system enables families and providers to make dynamic decisions about how and where to modify approaches, as the child progresses and/or faces new challenges. Young children participating in this treatment usually spend 6–8 h per day in treatment sessions, with breaks every 2–3 h. Often, the sessions happen in the child’s home.

**Proponents’ View** 1.  Meta-analytic methods (i.e., statistically analyzing all available data across several different studies) and comprehensive scientific reviews support the effectiveness of EIBI for some, but not all, children (Eldevik et al. 2011; Howlin et al. 2009; Matson and Smith 2007; Peters-Scheffer et al. 2011; Reichow and Wolery 2009).

2.  Many of the teaching strategies used in EIBI are evidence-based (National Standards Project 2010), including discrete trial training, frequent reinforcement, and ongoing assessment of child behavior.
 **Critics’ Views of EIBI** 1.  It can be difficult to implement an intensive treatment model for many families, both with regard to time, family stress, and financial resources (Gresham and MacMillan 1998; Schopler et al. 1989).

2.  Some of the studies that are in the literature do not demonstrate a lot of improvement, and it is difficult to know which children will respond best to this particular model of intervention.

3.  Some researchers are critical of features of the studies which are frequently cited as demonstrative of effectiveness of EIBI (i.e., Lovaas 1987; McEachin et al. 1993; Smith et al. 2000). For example, some early outcome studies reported a return to normal functioning for a substantial number of children (Lovaas 1987), which has been refuted by other scientists (Shea 2004). Some researchers have expressed caution in interpreting the findings for effectiveness of EIBI, in part due to the ways

expressed caution in interpreting the findings for effectiveness of EIBI, in part due to the ways the outcomes were measured and how decisions about group membership were made, issues of sample size, variability of characteristics of children across studies, lack of intervention fidelity across sites, and some inconsistent findings in studies conducted at replication sites (Bassett et al. 2000; Gresham and MacMillan 1997a, b; Howlin et al. 2009; Myers et al. 2007; Spreckley and Boyd 2008).

4.  Developmentally oriented practitioners suggest that the curricula are not sequenced/implemented in a way that is consistent with principles of effective early childhood education.
5.  Prioritizing 1:1 direct instruction with the child usually means foregoing instruction in group settings (i.e., preschool), and the child may lack opportunities to learn social and communication skills in real-life settings with other children.

6.  Some children become passive learners, cooperative in instructional sessions but not able to spontaneously practice the targeted skill in natural settings.
7.  Parent and family involvement is not necessarily a part of the intervention program.

**Outcome Measurement** 1.  Many young children make significant gains in overall developmental functioning with this approach, with improvements in IQ scores ranging from 15 to 25 points after 2 years of intensive intervention during early childhood (see Fenske et al. 1985; Lovaas 1987; McEachin et al. 1993; Sheinkopf and Siegel 1998; Smith et al. 2000). There is some evidence that children who are more intellectually competent respond best to EIBI.

2.  Several studies examined school placement and report that children receiving EIBI were likely to be fully included in general education classrooms at first grade (Sallows and Graupner 2005).

**Qualifications of Treatment Providers** EIBI is most effective when delivered and supervised by a team of well-trained professionals (Bibby et al. 2001; Smith et al. 2000). EIBI teams tend to be multidisciplinary, with team members who are certified behavior analysts, speech therapists, educators, occupational therapists, and paraprofessionals.

**See Also** ▶Applied Behavior Analysis (ABA) ▶Direct Instruction ▶Lovaas Approach ▶UCLA Young Autism Project  **Early Intervention**  **Synonyms** Birth-to-three; EI  **Definition** Early intervention (EI) refers to publicly funded programs available to infants and toddlers with disabilities and their families, through the Individuals with Disabilities Education Act (IDEA), first authorized by congress in 1986. EI programs offer specialized health, educational, and therapeutic services

by congress in 1986. EI programs offer specialized health, educational, and therapeutic services designed to meet the needs of children, from birth up until age 3, who have a developmental delay or disability, and their families. EI programs often have various names among different states. For example, the statewide EI program in Connecticut is often referred to by parents and professionals as “Birth-to-three,” while those in Georgia use the program name “Babies Can’t Wait.” EI programs receive

while those in Georgia use the program name “Babies Can’t Wait.” EI programs receive both federal and state funding, in order to offer services to families free of charge. To be eligible for services, children must be less than 3 years of age and have a confirmed disability or established developmental delay, as defined by their state of residence, in one or more of the following areas of development: cognitive, communication, social-emotional, motor skills, and/or adaptive skills. Following

cognitive, communication, social-emotional, motor skills, and/or adaptive skills. Following developmental evaluation to determine eligibility, services are typically delivered to children in their home, or within community and center-based programs, or other natural environments. EI service providers include special educators, social workers, speech therapists, physical therapists, occupational therapists, nurses, psychologists, and nutrition specialists. EI programming may also be provided to

nurses, psychologists, and nutrition specialists. EI programming may also be provided to children who are considered to be at risk of developing substantial delays if services are not provided. The following are considered overarching goals of EI: to reduce the likelihood of delays among at-risk children, support improved outcomes and independence among children with developmental disabilities throughout the lifespan, empower and educate families, and to provide intervention to children,

throughout the lifespan, empower and educate families, and to provide intervention to children, regardless of race, ethnicity, or income.

**See Also** ▶Early Diagnosis ▶First Words Project  **Early Language Milestone Scale**  **Synonyms** Early language milestone scale-2; ELM scale-2  **Description** The Early Language Milestone Scale-2 (ELM Scale-2) was developed for use in pediatric clinical settings as a brief screening of the language abilities of children under the age of 3 years (Coplan 1993). Responses are obtained from a combination of parental/caregiver report, examiner observation, and direct testing. This assessment

combination of parental/caregiver report, examiner observation, and direct testing. This assessment has three sections: auditory expressive, auditory receptive, and visual. It also provides screening for speech intelligibility (how understandable the child’s speech is) at 3–4 years of age. The instrument is composed of 43 items and takes approximately 10 min to administer. The ELM Scale-2 is available in English only.

**Historical Background** The ELM Scale-2 was published in 1993, authored by James Coplan, M.D.  **Psychometric Data** The measure has a relatively small normed sample of under 200 children under 3 years of age with no breakdown by age within the sample. Eighty percent of the sample is classified as white and 20% is classified as “nonwhite.” Eighty percent of the sample is classified as middle-class socioeconomic background and 20% from “lower” socioeconomic background groups. The manual

socioeconomic background and 20% from “lower” socioeconomic background groups. The manual reports higher inter-rather reliability, but lower test-retest specificity. Concurrent validity data reported supports the use of the ELMS-2 as a screening instrument, to be completed prior to a more thorough communication assessment, if warranted. Although specificity is high, suggesting the measure is valid for identifying 24-month-old children who have normal language development, sensitivity is lower,

for identifying 24-month-old children who have normal language development, sensitivity is lower, so that it may be less useful for identifying children with the possibility of language delay.

**Clinical Uses** This test is quick and easy to administer with little training. Aside from standardized, comprehensive language assessments administered by trained speech-language pathologist, the ELM Scale-2 can be administered by other medical and healthcare practitioners in pediatric clinical settings and early intervention settings. The ELM Scale-2 contains scoring options, as it may be administered using a “pass/fail” or a point scoring method. The pass/fail method yields a global pass

using a “pass/fail” or a point scoring method. The pass/fail method yields a global pass or fail rating for the test as a whole, whereas the point scoring yields percentile values, standard scores, and age equivalents for each area of language function mentioned above. Its properties suggest it is a viable screening measure; however, due to the small and limited normative sample, standard scores provided for the ELM Scale-2 must be used with caution.

**See Also** ▶Expressive Language ▶Receptive Language  **Early Social-Communication Scales (ESCS)**  **Synonyms** ESCS  **Description** The Early Social Communication Scales is a structured assessment designed to provide measures of individual differences in nonverbal communication skills in children with mental ages between 8 and 30 months of age. The administration requires 15–25 min involving the presentation of approximately 17 tasks which provide opportunities for social communication.

the presentation of approximately 17 tasks which provide opportunities for social communication. Tasks include the presentation of object spectacle toys (e.g., a wind-up toy), turn-taking tasks (e.g., ball play), social interaction (e.g., tickling), gaze following tasks, and opportunities to respond to an invitation to play. The child is typically seated across the table from the examiner, and may be either seated in a chair or seated in their parent’s lap. The session is videotaped and from

may be either seated in a chair or seated in their parent’s lap. The session is videotaped and from the recordings, observers classify children’s behaviors into the following mutually exclusive categories of early social-communication: joint attention behaviors (use of nonverbal behaviors to share experiences), behavioral requests (use of nonverbal behavior to obtain objects or events), and social interaction behaviors (ability to engage in playful turn-taking behavior). These behaviors are

interaction behaviors (ability to engage in playful turn-taking behavior). These behaviors are also classified based on whether or not they are child-initiated bids or child responses to the examiner.

**Historical Background** The ESCS was first developed in 1982 and from a Piagetian stage–based understanding of early development, emphasizing the complexity of a child’s social communicative skills within the context of a child’s goals with a behavior (either communicative or interpersonal). In the previous version, a set of 25 semi-structured situations were utilized to elicit social communication, with approximately 110 possible occurrences of child behavior rated in terms of its

communication, with approximately 110 possible occurrences of child behavior rated in terms of its complexity, goal, and degree of initiation. The current abridged version of the ESCS was designed to be utilized as a more practical research and clinical tool.

**Psychometric Data** Several research studies have been conducted exploring the performance of typically developing children and children with developmental disabilities on the ESCS as well as the reliability of the instrument. In addition, preliminary normative information is available within the ESCS manual (Mundy et al. 2003). In typical populations, performance in responding to joint attention on the ESCS between 14 and 17 months was a significant predictor of subsequent receptive

attention on the ESCS between 14 and 17 months was a significant predictor of subsequent receptive language development (Mundy and Gomes 1998). Research has been conducted on the ESCS across several clinical populations, including children with Down syndrome (Mundy et al. 1995, 1988) and also infants at risk (Sheinkopf et al. 2004). In terms of ASD, research suggests that children with ASD tended to demonstrate the greatest deficits in joint attention behaviors on the ESCS, although

ASD tended to demonstrate the greatest deficits in joint attention behaviors on the ESCS, although difficulties were noted across all areas of nonverbal communication for children on the spectrum (Mundy et al. 1994). Moreover, children with ASD displayed greater deficits in gestural joint attention skills, and these skills significantly predicted language development in children with ASD (Mundy et al. 1990).

**Clinical Uses** The ESCS is largely utilized as a research tool (as it requires detailed offline scoring); however, it can also be used as a clinical tool by speech-language pathologists, early childhood specialists, and psychologists, as well as other professionals trained to administer the assessment in the context of a diagnostic or developmental evaluation.

**See Also** ▶Joint Attention ▶Nonverbal Communication  **Early Start Denver Model**  **Definition** The Early Start Denver Model (ESDM) is a comprehensive early intervention for toddlers with autism ages 12–48 months. The model resulted from the collaboration of Sally Rogers and Geraldine Dawson and their colleagues at the University of Washington Autism Center, with Rogers’ colleagues, especially Laurie Vismara, at the University of California, Davis, and at JFK Partners, University of

Laurie Vismara, at the University of California, Davis, and at JFK Partners, University of Colorado Health Sciences Center. The approach is manualized and described in detail by Rogers and Dawson (2010b). The ESDM and the Denver Model (DM) that preceded it were developed to target the core deficits seen in toddlers and preschoolers with autism: social orientation, attention, affect sharing and attunement, imitation, joint attention, language development, and functional and symbolic play. The

attunement, imitation, joint attention, language development, and functional and symbolic play. The ESDM has an interactive communication- and relationship-based framework that fosters active experiential learning by supporting child spontaneity and initiative. It has a developmental curriculum which incorporates teaching techniques that have received empirical support for improving skill acquisition. The ESDM is based on a fusion of the Denver Model, an affective and developmentally-based

The ESDM is based on a fusion of the Denver Model, an affective and developmentally-based intervention for children (ages 2–5) with autism (Rogers 2000); the nature of the teaching interactions and the curricular priorities are influenced by Stern’s model of infant interpersonal development (Stern 1985) and pivotal response training (PRT), developed by Laura Schreibman and Robert and Lynn Koegel (Koegel et al. 1989). PRT involves a naturalistic application of applied behavior analysis (ABA) to

(Koegel et al. 1989). PRT involves a naturalistic application of applied behavior analysis (ABA) to develop language and social skills. The main differences between ESDM and DM involve (1) focus on toddlers ages 12–48 months in the ESDM; (2) fusion of practices and principles of PRT with those of the DM; (3) added concept and explicit terminology from applied behavior analysis; (4) more rigorous and defined measurement practices; and (5) a well-defined curriculum appropriate for children 12–48

and defined measurement practices; and (5) a well-defined curriculum appropriate for children 12–48 months of age. The ESDM and DM have been tested in classroom applications, in one-on-one delivery, in intensive delivery of 15–20 h a week, and via parent delivery. The approach is flexible and designed to be used (1) at home, embedded within typical play and caretaking activities, and in child care and preschool settings; (2) in 1:1 treatment sessions including parent coaching provided by

care and preschool settings; (2) in 1:1 treatment sessions including parent coaching provided by credentialed providers; and (3) in group programs that can provide individual support to a child.

**Historical Background** Development of the Denver Model (DM) began at the University of Colorado Health Sciences Center in 1981, in response to demonstration preschool funding from the US Department of Education. The DM had a developmental and pragmatic approach to language acquisition and emphasis on learning through play and through positive, lively relationships. An interdisciplinary strategy, including a strong role of occupational therapy, positive behavior supports, and a central role

including a strong role of occupational therapy, positive behavior supports, and a central role of parents, has persisted. The curriculum tool was begun during this period and enhanced and extended for toddlers in the ESDM. The DM expanded into an approach suitable for use as a 1:1 home-based program during the 1990s. Replications in publically funded sites demonstrated that the model could be implemented in community settings and that child development significantly accelerated with its use.

in community settings and that child development significantly accelerated with its use. Significant enhancements of the model occurred in the past 10 years, including more rigorous definitions of delivery and measurement and data collection procedures when the University of Washington tested the approach in a randomized controlled trial with a focus on toddlers (Dawson et al. 2010).

**Rationale or Underlying Theory** Three theoretical models provide the foundations for the ESDM curriculum and teaching practices. These include Rogers and Pennington’s model of interpersonal development in autism (Rogers and Pennington 1991), Dawson and colleagues’ model of autism as a disorder of social motivation (Dawson et al. 2004), and the approach to learning defined by PRT (Schreibman and Pierce 1993).

Rogers and Pennington (1991) hypothesized a developmental model of autism that began with biologically-based deficits in imitation abilities and related impairments in emotional sharing and nonverbal communication in the first year of life. The authors were influenced by Daniel Stern’s 1985 model of interpersonal development in infancy. This model presents a theory concerning autism-specific impairments in three developmentally critical behaviors – imitation, emotion sharing, and joint

impairments in three developmentally critical behaviors – imitation, emotion sharing, and joint attention. A main focus of the ESDM is to address these critical behaviors within affectively rich relationships with responsive, sensitive others.

The ESDM has been influenced by research on another core feature of autism: impaired social motivation. Dawson and colleagues (Dawson et al. 2004, 2005) have contributed to identifying this characteristic in infants who will develop autism, and they hypothesize that the biology of autism involves a deficiency in social motivation due to the infant’s lack of sensitivity to social reward. This lack of sensitivity results in a failure to have a normal preference and active attention to social

lack of sensitivity results in a failure to have a normal preference and active attention to social information, including others’ faces, voices, gestures, and speech. This failure, combined with impairments in imitation, emotional sharing, and joint attention, is an obstacle to the child’s development of socio-emotional and communicative skills. As a result, the child with autism becomes increasingly removed from the social world and all the learning experiences that exist inside that world.

removed from the social world and all the learning experiences that exist inside that world. The child falls farther behind because he or she lacks the skills needed to access the social learning environment. Dawson and colleagues have suggested that this lack of engagement not only alters the course of behavioral development but also affects the way neural systems, underlying the perception and representation of social and linguistic information, are developed and organized (Dawson 2008).

and representation of social and linguistic information, are developed and organized (Dawson 2008). Several of the strategies utilized in the ESDM are designed to increase the salience of social rewards and enhance the child’s attention and motivation for social interaction.

PRT involves a naturalistic use of applied behavior analysis to develop language and social skills. The approach is flexible and is designed to be embedded within typical play and caretaking activities at home and in child care and preschool settings. PRT is an empirically supported practice, given its documentation of enhanced child motivation, spontaneity, and social initiation and of improved language, maintenance and response generalization, and for concomitant reductions in unwanted

language, maintenance and response generalization, and for concomitant reductions in unwanted behaviors. Child motivation is optimized by the use of reinforcers related to the child’s goals and responses and child choice, interspersing acquired tasks with acquisition tasks, therapist reinforcement of attempts to perform the desired behavior, and using activities that are highly motivating to the child. Therapists take turns with the child to share control of the interaction, to capture child

child. Therapists take turns with the child to share control of the interaction, to capture child attention, and to model behavior that may not be in the child’s repertoire. These three orientations have in common the view that autism impedes an infant’s interpersonal experiences. In so doing, it creates barriers to social-communicative development, which lead to greater impairments due to the loss of social learning opportunities.

**Goals and Objectives** The goal of ESDM intervention is to increase child social-communicative and relational learning. The main intervention objectives are (1) to bring the child into coordinated, interactive social relations for most of his or her waking hours by supporting all caregivers and therapists to embed ESDM techniques into all daily activities; (2) to provide the child with social learning tools involving imitation, joint attention, language, and social play through teaching

learning tools involving imitation, joint attention, language, and social play through teaching inside all daily activities; and (3) to embed a high frequency of specific dyadic learning opportunities in each activity of daily life and also into each intervention activity to “fill in” the learning deficits that have resulted from the past lack of social learning (Rogers 2000). These goals and objectives are accomplished with the following ESDM guiding principles:

(a) A positive emotional exchange between children and key adults. ESDM intervention activities involve a series of play routines which facilitate the child’s pleasure and social engagement and create many opportunities for shared affect and reciprocal interactions.

(b) Joint activity routines (Ratner and Bruner 1978) are the primary vehicle for teaching, and the teaching episodes are carried out inside this joint activity frame. The play interactions are child-centered, in that children’s choices and preferred activities and materials are featured. The adult shares control of the play by selecting what objects are available, what actions are modeled and reinforced, and how activities are sequenced. Joint activities involve objects and activities that are

and how activities are sequenced. Joint activities involve objects and activities that are found in natural environments for children of this age. All developmental skills are taught in this way, including the development of a repertoire of sensory motor and constructive, functional, and symbolic play.

(c) The ESDM is grounded in the science of learning and uses teaching strategies consistent with the principles of applied behavior analysis. ABA has received empirical support, altering the symptoms associated with both autism and general developmental delays (Koegel et al. 1988; Lovaas 1987). Core teaching techniques from PRT that are emphasized in the model include (1) obtaining child attention before delivering an instruction or model; (2) using a clear A-B-C format in teaching trials that

before delivering an instruction or model; (2) using a clear A-B-C format in teaching trials that are embedded in play activities (the antecedent stimulus precedes the behavior, which is followed by a consequence); (3) reinforcing target skills using intrinsic reinforcers where they exist, pairing nonsocial reinforcers with social attention, and delivering contingent consequences; (4) using shaping, chaining, prompting, fading, and error correction to develop the antecedent-behavior link and to

chaining, prompting, fading, and error correction to develop the antecedent-behavior link and to shape a partial performance to a more accurate performance.

(d) The language intervention approach comes from the science of communication development and recognizes that verbal language develops from nonverbal communication (Bates and Dick 2002; Bruner 1975). Both verbal language and nonverbal communication coordinate people’s activities and allow partners to share mental states: intentions, desires, interests, thoughts, and feelings. In each intervention session, multiple and varied communicative opportunities are provided and many communications,

session, multiple and varied communicative opportunities are provided and many communications, both verbal and nonverbal, are elicited from the child. The range of communicative functions is developed so that a child not only requests an activity but also protests, greets familiar adults, shares attention, and comments, as well as other functions. Children’s spontaneous communications exert much control over interactions and activities, thus demonstrating the power of communication and assuring

over interactions and activities, thus demonstrating the power of communication and assuring its reinforcement.

(e) The ESDM views autism as disrupting development in all domains (Goodman 1989), and it uses a multidisciplinary approach to address specific domains. Children’s developmental skills are evaluated in each domain, and intervention objectives are written for all areas. Though developmental patterns in autism have been understudied, research in different domains has demonstrated that young children with autism follow fairly normal trajectories of development even in their affected areas (see

with autism follow fairly normal trajectories of development even in their affected areas (see Lifter et al. 1993 regarding symbolic play; Tager-Flusberg et al. 1990 regarding language development; and Ungerer and Sigman 1987 regarding early sensory motor development). The curriculum domain items were extracted from research in early child development in multiple domains: cognition, expressive and receptive language, social-emotional development, fine and gross motor development, self-care

and receptive language, social-emotional development, fine and gross motor development, self-care skills, play, and imitation. The curriculum was developed by a team of professionals with expertise in developmental and clinical psychology, applied behavior analysis, early childhood special education, speech and language pathology, and occupational therapy. Developmental and clinical psychologists contribute to the sequence of acquisition and the normative strategies for interaction, cognitive

contribute to the sequence of acquisition and the normative strategies for interaction, cognitive development, play, and imitation. Applied behavior analysts contribute empirically derived strategies for effective teaching and use of functional assessment and analysis to develop approaches for unwanted behaviors and effective teaching practices. Early childhood special education contributes expertise on cognition and play and pre-academic development. Speech and language pathology informs the

on cognition and play and pre-academic development. Speech and language pathology informs the sequence of speech development, the varied functions of communication, and augmentative and alternative communication approaches. Occupational therapy informs the sequence and content of motor and self-care skills, personal independence, the use of activities to build developmental skills, and optimization of arousal and sensory responsivity to facilitate attention and engagement in learning.

of arousal and sensory responsivity to facilitate attention and engagement in learning. Developmental and behavioral pediatrics contributes knowledge of the health concerns of individual children which can interfere with children’s ability to benefit from the intervention.

(f) The ESDM team provides oversight and consultation regarding treatment design and delivery to the parent and primary therapist for each child. At this time, ESDM is primarily delivered by parents and trained therapists providing 1:1 teaching, though it can also be used in group situations, and several research studies are currently in progress concerning efficacy of group delivery. Direct delivery of the intervention is generally directed by one professional, the team leader, or primary

delivery of the intervention is generally directed by one professional, the team leader, or primary therapist, working with parents and therapy assistants in a generalist model, with the multidisciplinary team supporting that primary provider. The generalist delivery approach is used to keep the intervention consistent across treatment sessions and as economical as possible. It also models what parents need to do: address all the child’s needs. The full team is available as consultants to the

parents need to do: address all the child’s needs. The full team is available as consultants to the primary therapist and family. When ESDM is delivered in a group preschool setting, the classroom teacher takes the generalist role. The team leader must be credentialed in his or her profession and certified as an ESDM therapist. The team leader is responsible for a variety of tasks: working with the parents to learn ESDM at home and to assess children’s strengths and needs; administering the

the parents to learn ESDM at home and to assess children’s strengths and needs; administering the Curriculum Checklist quarterly and writing 3-month objectives and breaking them down into teaching steps; delivering the intervention and supporting the parents to do so; training and supervising any noncredentialed person who is helping to deliver ESDM; coordinating care with other professionals; and keeping and analyzing daily data and adapting the intervention plan as needed to foster rapid

and keeping and analyzing daily data and adapting the intervention plan as needed to foster rapid child progress.

(g) Parent learn to deliver ESDM at home from their team leader, since the embedding of ESDM techniques throughout daily care and play routines is fundamental to the model and necessary for optimal progress. A manual for parents is published by Rogers, Dawson, and Vismara, An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn (2012, Guilford Press).

**Treatment Participants** The approach is developed for young children with autism, ages 12–48 months, and developmental quotients over 35 and has been demonstrated to be effective for children with a wide range of skill levels. However, it has only been tested with ambulatory children who have functional hand use and are interested in toys and other objects. It has not been tested with children who have additional diagnoses like Down syndrome or fragile X. In all trials of ESDM, parents have

who have additional diagnoses like Down syndrome or fragile X. In all trials of ESDM, parents have learned to use the methods at home. Effectiveness when parents have not learned to use the method and are not supported on a weekly basis has not been tested.

**Treatment Procedures** Each child’s learning plan is defined by short-term objectives that represent what is to be learned over a 12-week period and activities carried out daily to teach the objectives. The objectives are derived from a curriculum assessment carried out each 12 weeks using the ESDM Curriculum Checklist (Rogers and Dawson 2010b). The ESDM Curriculum Checklist covers the following domains: receptive communication, expressive communication, social interaction, imitation skills,

domains: receptive communication, expressive communication, social interaction, imitation skills, cognitive skills, play skills, fine motor skills, gross motor skills, independence/behavior, and joint attention. Each objective is broken down into 5–6 teaching steps that lay out the build-up of the skill. A daily data sheet allows the therapist to teach skills and track progress in very small steps.

Fourteen aspects of the teaching process are quantified in the ESDM fidelity tool. A primary characteristic involves child-initiated activities in which adults embed instruction into play and other daily functional activities, since this kind of teaching has demonstrated gains in spontaneity, motivation, maintenance, and generalization. Adults provide children with choices of materials and activities to support learning of the targeted objectives and to maximize attention and motivation, while

to support learning of the targeted objectives and to maximize attention and motivation, while considering the child’s preferences, age, developmental skills, and learning style. Joint activity routines (Ratner and Bruner 1978) are the vehicle for teaching. A joint activity routine involves a four-part play activity between child and adult that allows for an activity to be begun, developed, elaborated, and completed. Objectives from two or more different developmental domains are addressed in

and completed. Objectives from two or more different developmental domains are addressed in each 2–5-min joint activity routine. Learning opportunities occur approximately every 10–15 seconds during these activity routines. Transitions between activities are responsive to children’s need for change and are accomplished in a fashion that fosters child independence, motivation, and choice.

Adult emotion is expected to be warm, positive, and playful. Adults and children interact reciprocally with objects and in communication exchanges, taking turns and sharing leader-follower roles. Another key aspect of the teaching process involves adult language. Adults use natural language fit to the child’s ongoing activity and syntactically constructed using the “one up” rule, which specifies that the adult’s language should involve sentence length that is roughly one word longer than the

that the adult’s language should involve sentence length that is roughly one word longer than the child’s typical sentence. Adults are to narrate, comment, and label actions, objects, and emotions; to model appropriate gestures and speech; and to expand child utterances rather than to question children or tell them what to say. Children’s communication begins with gestural development and multiple pragmatic intents, with a focus on phonetic development, development of intentional vocalization,

pragmatic intents, with a focus on phonetic development, development of intentional vocalization, and reciprocal and meaningful vocal exchanges.

Adult-child interactions are playful and follow children’s interests and motivations, addressing short-term objectives from multiple domains. Adults are expected to provide clear learning opportunities, at a rate of several per minute. A systematic decision process (response to intervention [RTI]) is used in ESDM to “tailor the treatment,” by systematically altering teaching procedures if children are not progressing rapidly. This decision tree (Rogers and Dawson 2010b) is highly articulated

are not progressing rapidly. This decision tree (Rogers and Dawson 2010b) is highly articulated and allows for a “toolbox” of empirically-based teaching practices for young children with autism to be used if needed, but it prescribes how, when, and for how long, to alter the basic ESDM teaching processes. While the basic ESDM teaching approach favors naturalistic teaching, warm and emotionally positive relationships, varied activities, intrinsic reinforcers, and shared control, no empirically

relationships, varied activities, intrinsic reinforcers, and shared control, no empirically supported teaching approach is “off limits”. However, the quality of relationship and communication principles of ESDM is embedded regardless of what specific teaching practices are being used.

Parents are an integral part of ESDM, and their priorities, values, and child-rearing practices are incorporated into quarterly child objectives, teaching practices, and assessment of progress (Vismara et al. 2009a). Parents learn to incorporate the ESDM approach into caretaking and family routines as well as play activities. The transmission process involves a coaching relationship between provider and parents. The goal of parent coaching is to promote the child’s social-communication and

and parents. The goal of parent coaching is to promote the child’s social-communication and cognitive development and to promote parent-child communication and play, to foster parents’ feelings of competence and confidence in their interactions with their child, and to maximize child learning opportunities (Vismara et al. 2009b).

**Efficacy Information** DM effects as a group preschool intervention were first examined in a series of papers examining pre-post test data (Rogers and DiLalla 1991; Rogers and Lewis 1989). Significant accelerations in developmental rates of young children with autism were found in cognition, language, reduction in autism symptoms, symbolic play, and social engagement. As a group, the children with autism doubled their developmental rates while in active treatment. Four independent

children with autism doubled their developmental rates while in active treatment. Four independent replications of the model (Rogers et al. 2006) demonstrated significant accelerations of developmental rates within 6 months of implementation. These studies suggested that the DM has the capacity to affect development in many areas.

The first study of the DM as an individually delivered intervention used a single-subject design which randomized minimally verbal preschoolers to either the DM or the PROMPT treatment (Rogers et al. 2006). PROMPT is a method for treating apraxia of speech developed by Deborah Hayden (formerly Chumpelik) and her colleagues in the early 1980s. The technique was originally developed for adults suffering apraxia of speech secondary to brain injury (Chumpelik 1984). PROMPT involves physical

suffering apraxia of speech secondary to brain injury (Chumpelik 1984). PROMPT involves physical stimulation of the speech motor system during intentional communicative vocalization or verbalization. The DM delivery involved 1 h of individual treatment and parent training weekly and daily 1-h home parent practice sessions for 12 weeks. Eighty percent of children in both approaches acquired functional speech at a frequency of 10–200 words per hour (Rogers et al. 2006).

The most important outcome study of ESDM used a randomized controlled design with 48 toddlers with autism, ages 18–30 months (Dawson et al. 2010). The ESDM group received 15 h per week of individual home treatment over a 24-month period, as well as 4 h per month of parent coaching. The comparison group received a variety of community interventions for the same period of time. Over a 24-month period, the ESDM group demonstrated large and highly significant increases compared to the community

the ESDM group demonstrated large and highly significant increases compared to the community intervention group in overall IQ gains, receptive and expressive language gains, and adaptive behavior functioning. These differences were not likely due to the number of intervention hours delivered, since the two groups’ intervention hours were very similar. Follow-up studies of these children will determine the trajectory of their development 5 years after this study. A multisite replication of this

the trajectory of their development 5 years after this study. A multisite replication of this study involving 100 12–24-month-olds is ongoing.

**Outcome Measurement** Child learning objectives in all core developmental areas are written every 12 weeks. Child progress is monitored after every 15 min of treatment on “daily data sheets” developed from the child’s short-term objectives. Measurable progress is expected on every objective within a 1–2-week period and mastery of all objectives is assessed every 12 weeks. New objectives are written and broken down into small teachable steps, and new data sheets are developed at these 12-week

and broken down into small teachable steps, and new data sheets are developed at these 12-week intervals. Annual progress is measured through a battery of standardized tests, involving development, adaptive behavior, vocabulary and gesture use, and the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 1999) to measure the number and severity of autism symptoms.

**Qualifications of Treatment Providers** ESDM treatment providers have completed multiple levels of training and have received certification as ESDM therapists. Those who coach families to use ESDM at home have also been certified as ESDM parent coaches, and those who train others to use ESDM are certified as ESDM trainers. Training is available at multiple sites in the USA and abroad, and those seeking training can find information on the ESDM website. All ESDM published studies were carried

seeking training can find information on the ESDM website. All ESDM published studies were carried out by trained and credentialed therapists and staff. Professionals from a wide number of disciplines may be trained as ESDM therapists. Those professions include occupational therapy, physical therapy, speech and language pathology, early childhood education, early childhood special education, clinical child psychology, school psychology, and other professions that include background in early

child psychology, school psychology, and other professions that include background in early childhood development as part of the graduate curriculum. Those without a professional credential cannot be certified as an ESDM therapist, though they may work under the training and supervision of an ESDM-credentialed therapist.

The ESDM was developed to be provided by a team of childhood professionals with training and experience in early autism intervention from a variety of disciplines. The team leader is credentialed in their profession and as an ESDM provider and is responsible for a variety of tasks: working with the parent to assess the child’s needs and strengths; developing short-term objectives and breaking them down into teaching steps; delivering the intervention and supporting the parent to do so;

them down into teaching steps; delivering the intervention and supporting the parent to do so; training and supervising any non-licensed persons who are helping deliver ESDM; and keeping and analyzing data to assure child progress or to adapt the intervention methods to improve progress. Parents learn to deliver ESDM at home from their team leader, since the embedding of ESDM techniques in play and caretaking routines is necessary for optimal progress. Materials are available to help parents

and caretaking routines is necessary for optimal progress. Materials are available to help parents adopt the techniques, and a manual is currently being published (Rogers et al. 2012). For children who are receiving many hours of ESDM weekly, well-trained paraprofessionals may deliver the intervention under the ongoing supervision of the team leader. Paraprofessionals learn to deliver the model at appropriate levels of fidelity of intervention under the supervision and guidance of trained ESDM

appropriate levels of fidelity of intervention under the supervision and guidance of trained ESDM professionals. Fidelity should be checked frequently when multiple adults are delivering ESDM. Team meetings should occur at least every 2 weeks to review child progress, discuss the intervention plan, and assure intervention consistency. While printed ESDM materials are available to the public, it is usually necessary to attend specific training to master the ESDM. Those wanting to learn ESDM can

usually necessary to attend specific training to master the ESDM. Those wanting to learn ESDM can access training materials through the MIND Institute website. Information about training workshops in various cities and countries is also posted. http://www.ucdmc.ucdavis.edu/mindinstitute/research/esdm/certification.html

**See Also** ▶ABA ▶Imitation ▶Joint Attention ▶Occupational Therapy (OT)  **Early-Life Exposure to Antibiotics and Autism Spectrum Disorders**  **Definition** Autism spectrum disorders (ASD) encompass a range of neurodevelopmental disorders, which include autism and Asperger syndrome. Early-life exposure to antibiotics includes their use by pregnant mothers (prenatal) and children during early childhood. The gut microbiota refers to the many species of microorganisms living in our intestine.

**Historical Background** One of the key subjects in the field of human microbiota research is its connection to neurodevelopmental and psychiatric conditions. A number of studies have confirmed that individuals with autism have different intestinal microbiome compositions compared to those of healthy individuals (Kraneveld et al. 2016). Interactions between the gastrointestinal tract and the central nervous system, which are explained by the so-called microbiome-gut-brain axis model (Cryan

central nervous system, which are explained by the so-called microbiome-gut-brain axis model (Cryan and Dinan 2012), form the rationale for investigating the gut microbiota as a possible contributor to the pathogenesis of autism. According to the aforementioned model, disturbed immune response and release of cytokines triggered by microbiota alterations may affect function of the central nervous system. Antibiotics are proposed as a potential causative factor for this phenomenon, since they are

Antibiotics are proposed as a potential causative factor for this phenomenon, since they are known to disturb the composition of microbiota in infancy (Yassour et al. 2016). The first reports that linked autism symptoms with antibiotic-associated microbiota alterations were published in the early 2000s. In 2000, Sandler et al. described a group of 11 autistic children who developed ASD symptoms and chronic diarrhea shortly after use of broad-spectrum antimicrobials. Subsequently, the children

and chronic diarrhea shortly after use of broad-spectrum antimicrobials. Subsequently, the children underwent an 8-week course of oral vancomycin therapy, after which a transient improvement was observed in their behavior and communication skills (Sandler et al. 2000). A case series published 5 years later described 206 children who reportedly received multiple courses (mean number per child: ~12) of antibiotics for multiple bouts of otitis media before the occurrence of autism symptoms (Fallon

of antibiotics for multiple bouts of otitis media before the occurrence of autism symptoms (Fallon 2005). The aforementioned reports lacked control groups – or, in case of the 2005 study, any statistical analysis – therefore, their findings were insufficient to allow clear conclusions to be drawn. However, after these first claims of an association between early-life antibiotic exposure and the occurrence of autism, a number of larger observational studies with analytical design were performed.

**Current Knowledge** The largest studies on the subject performed to date derived data from Danish and Canadian population-based cohorts. A study of more than 95,000 Danish children (Atladottir et al. 2012) reported a borderline significant increase in the risk of ASD after use of any antibiotics during pregnancy. A slightly stronger association of prenatal antibiotic exposure with the risk of ASD was reported for the use of sulfonamides, whereas macrolides were associated with a higher risk

ASD was reported for the use of sulfonamides, whereas macrolides were associated with a higher risk of infantile autism. On the other hand, the authors pointed out that multiple testing could be a potential limitation of the study. In total, more than 100 comparisons were made; therefore, the few statistically significant associations could be chance findings. Early childhood antibiotic exposure as a risk factor for ASD was investigated in a study of more than 200,000 Canadian children (Hamad

as a risk factor for ASD was investigated in a study of more than 200,000 Canadian children (Hamad et al. 2018). There was a trend toward a reduced risk of ASD in children exposed to any antibiotics during the first year of life; however, no such association was found in an analysis among siblings. In another study of more than 650,000 Danish children, a slightly increased risk of autism was observed in children exposed postnatally to penicillin or to broader-spectrum antibiotics compared to

in children exposed postnatally to penicillin or to broader-spectrum antibiotics compared to children unexposed to antibiotics (Axelsson et al. 2019). In this study as well, a significant association was no longer observed in the sibling model. Another cohort study of more than 780,000 Danish children reported a slightly increased risk of autism after use of broad- and moderate-spectrum antibiotics (Wimberley et al. 2018). However, the population of this study overlapped with the population of

(Wimberley et al. 2018). However, the population of this study overlapped with the population of the previous one. Moreover, the findings were not explored in sibling analysis. Data from the aforementioned cohort studies do not support a clinically significant association between early childhood antibiotic exposure and the development of ASD. Authors of pointed out that the borderline significance of the results and lack of confirmation of findings in sibling analyses contribute to ambiguity of

of the results and lack of confirmation of findings in sibling analyses contribute to ambiguity of the results.

Additionally, the association between ASD and early-life antibiotic exposure has been evaluated in a number of smaller case-control studies. In some of them, no significant associations were found (George et al. 2014; Guisso et al. 2018; Isaksson et al. 2017). In others, a slightly increased risk of ASD was reported after use of various antibiotics (Bittker and Bell 2018; Grossi et al. 2018; Niehus and Lord 2006). In 2019, a systematic review summarized the available evidence on pre- and

Niehus and Lord 2006). In 2019, a systematic review summarized the available evidence on pre- and postnatal antibiotic exposure and subsequent risk of ASD (Lukasik et al. 2019). This review included 11 observational studies, consisting of cohort studies and case-control studies. The results of the included studies were conflicting, and the reported significant associations were usually of borderline significance or were derived from case-control studies with a considerable risk of bias.

borderline significance or were derived from case-control studies with a considerable risk of bias. Moreover, a meta-analysis performed by the authors did not yield any statistically significant results. The authors of the review concluded that the included articles do not provide strong support for the hypothesis that early-life antibiotic exposure is associated with subsequent development of ASD.

**Future Directions** As of now, there are not enough available data to conclusively rule out or confirm the notion that antibiotic use is a risk factor for ASD. It needs to be emphasized that this field of research faces a number of significant difficulties. Firstly, it is hard to discern whether the observed associations are due to the antibiotics themselves or are due to the underlying infections. Antibiotics are usually used to treat an infection, so controlling for this confounding factor

Antibiotics are usually used to treat an infection, so controlling for this confounding factor creates a serious challenge for the investigators. This obstacle could be partially overcome by identifying patterns of microbiota disturbance associated with ASD. However, even though some characteristic microbiota alterations have been identified (Rosenfeld 2015), it is unknown if a definable pattern of “ASD microbiome” exists. Moreover, even if such a pattern is discovered, it would be difficult to

“ASD microbiome” exists. Moreover, even if such a pattern is discovered, it would be difficult to link it to the impact of a particular antibiotic, as effects of antibiotics on microbiota are not specific (Yassour et al. 2016). To acquire a definitive answer to the question as to whether an antibiotic-ASD association exists, more studies are needed – both in epidemiology and in the field of the human microbiome.

**See Also** ▶Environmental Risk Factors for Autism ▶Gastrointestinal Disorders and Autism  **Eating Disorders**  **Synonyms** Anorexia; Bulimia nervosa; Pica; Rumination disorder  **Short Description or Definition** Eating disorders like anorexia and bulimia nervosa (AN/BN) are complex psychosomatic disorders of unknown etiology, primarily affecting adolescent girls and young women. They are characterized by aberrant patterns of eating behavior and weight regulation which in AN result in

characterized by aberrant patterns of eating behavior and weight regulation which in AN result in weight loss and endocrine abnormalities such as amenorrhea, disturbances in attitude and perception about weight and shape, and an intense fear of gaining weight. Patients are classified AN according to the Diagnostic and Statistic Manual 4th edition (DSM-IV, American Psychiatric Association 1994) when they are incapable to maintain a body weight above a minimal normal level (BMI < 17.5 kg/m2 for

they are incapable to maintain a body weight above a minimal normal level (BMI < 17.5 kg/m2 for adults), demonstrate an intense fear of becoming fat, have disturbed perceptions of body shape and size, and (after menarche) show amenorrhea. Two subgroups are classified, the restricting type in which weight loss is the result of dietary restriction and the binge/purge type in which periods of binging or purging and dietary restriction coexist. When compared to other psychiatric disorders, AN has

or purging and dietary restriction coexist. When compared to other psychiatric disorders, AN has the highest mortality rate: 10–15%. BN shares many features with AN but for the weight loss. Accompanying symptoms, such as perfectionism, obsessive-compulsive behavior, and social anxiety, are observed in many but not all patients. This characteristic cluster of personality and temperamental traits often persists after recovery and has been described preceding the onset of disease as well. In

often persists after recovery and has been described preceding the onset of disease as well. In addition, a large proportion of AN patients displays abnormally high physical activity levels and over exercises, although estimations vary from 31% to 80% because of definition difference. Although the etiology of AN is as yet unclear, a combination of cultural, social, psychological, genetic, and biological factors is implicated: “Genes load the gun, environment pulls the trigger” (Bulik and Tozzi

factors is implicated: “Genes load the gun, environment pulls the trigger” (Bulik and Tozzi 2004). Other problems sometimes observed include pica (eating of nonnutritive substances) and rumination (repeated regurgitation and rechewing of food).

**Categorization** The combination of eating disorders with autism spectrum disorders is uncommon and little researched. Most studies focus on disturbed eating behavior in autistic children. Some studies find that the behaviors themselves also occur in normally developing children, but much less often. Normally developing children seem to outgrow these behaviors while children with a disorder in the autistic spectrum do not. Two-thirds of parents of children with autistic spectrum disorder

in the autistic spectrum do not. Two-thirds of parents of children with autistic spectrum disorder describe picky eating in their children. The most frequently described eating disturbances are food neophobia and selective eating; other disturbances such as pica and rumination seem to be more common in autism associated with mental retardation. Problems with eating – including particular food refusal, food fads, pica, hoarding, overeating, and various degrees of anorectic behaviors, including

food fads, pica, hoarding, overeating, and various degrees of anorectic behaviors, including complete food refusal and compulsive ordering of food on the plate – are extremely common in autism. Pica and rumination may also be seen.

**Epidemiology** The total incidence of AN in the Netherlands is relatively stable. In the period of 1995–1999, the age and sex adjusted incidence rate was 7.7/100,000. Interestingly, the incidence in female 15–19-year-olds (as well as 10–14-year-olds) almost doubled when compared to 10 years before, indicating that the onset of the disease is currently taking place at a younger age (Van Son 2006). Average prevalence rates of AN in Europe appear stable at 0.29% (Hoek and van Hoeken 2003). In a

Average prevalence rates of AN in Europe appear stable at 0.29% (Hoek and van Hoeken 2003). In a controlled study of representative cases of anorexia nervosa, 18% had an autism spectrum disorder (4% autistic disorder, 6% Asperger syndrome, and 8% atypical autism), both at the time of onset of the eating disorder (around 15 years of age) and 5 and 10 years later.

**Natural History, Prognostic Factors, and Outcomes** Recovery of anorexia nervosa in general takes a long time; it has been reported that stable physical recovery is reached after on average 4.7 years and psychosocial recovery after 6.6 years. Final outcome figures of AN leave room for improvement. According to Steinhausen (2002), 20.8% (0–79%) of AN patients remain chronically ill, and 5.3% (0–22%) die as a consequence of starvation or by suicide. Chances for recovery range from 0% to 92%,

die as a consequence of starvation or by suicide. Chances for recovery range from 0% to 92%, averaging at 46.5%. Data in younger patient groups are more optimistic, reaching about 60% for complete recovery.

**Clinical Expression and Pathophysiology** A large number of studies indicate that there may be a propensity for underweight or comorbid eating disorders. One-fourth of male cases with autism of Asperger syndrome had a BMI in the 5th percentile or below, though no eating disorder diagnoses were justified. No association was found between autistic behavior and BMI, but there was a small effect of hyperactivity.

**Disturbed Eating Behaviors in ASD** Rumination, the repetitive regurgitation of recently ingested food into the mouth with subsequent spitting or remastication and swallowing, has been described in adolescents and adults with autism. It can lead to tooth erosion caused by gastric acid, as well as malnutrition and esophageal abnormalities. Pica, or eating inedible nonfood substances, seems to be a problem especially in institutionalized cases of mental retardation associated with autism. When

a problem especially in institutionalized cases of mental retardation associated with autism. When present, it is potentially dangerous and difficult to treat. Pica may result in gastrointestinal problems or poisoning with heavy metals. Overeating. Eating disturbances in Asperger, teenage boys: selective eating and hyperactivity resulting in low body weight. In adults with ASD and normal intelligence, health reasons are often given for special diets. Psychogenic polydipsia (excessive water

health reasons are often given for special diets. Psychogenic polydipsia (excessive water intake) presents a problem in autism with mental retardation. Food neophobia is the avoidance of all new foods. This has been linked to selective eating but should be treated separately. Selective eating (eating only ten foods or fewer, sometimes food of a special color, texture, or brand, avoidance or refusal of new foods)

**Proposed Underlying Mechanisms in Disturbed Eating Behaviors in ASD** Sensory abnormalities: Hyper/hyposensitivity to auditory, visual, tactile stimuli and to smell and taste may play a large part in mealtime behaviors. Interests: Restricted and intense ideas and interests, for example, having strict ideas about the appropriate amount of food required without paying attention to feeling of hunger or satiety, fixating on ideas of which food are healthy etc. Routines: Ritualized eating

of hunger or satiety, fixating on ideas of which food are healthy etc. Routines: Ritualized eating routines. Social interaction and other skills involved in dining: Eating with other people is an ordeal for many persons with autism because of doing several tasks simultaneously, leading to unusual table manners in some cases. Motor functioning: Motor problems are common in ASD, which can make the use of knife and fork difficult. Gastrointestinal problems: A high rate of gastrointestinal symptoms

of knife and fork difficult. Gastrointestinal problems: A high rate of gastrointestinal symptoms is reported in children with ASD compared to peers, in most cases without known medical causes. Anorexia nervosa: It is suggested that ASD and AN share some features, namely, obsessiveness, insistence on sameness, and social impairment. It is suggested that a subgroup of AN has a cognitive style very similar to ASD. Gender issues: AN and Asperger are both considered to be specific to one gender;

similar to ASD. Gender issues: AN and Asperger are both considered to be specific to one gender; perhaps if the criteria of AN would be reconsidered with the male population in mind, and the Asperger criteria would include more behaviors and attitudes more appropriate to females, much more overlap would occur.

**Evaluation and Differential Diagnosis** Evaluation and assessment vary depending on the nature of the eating problem. In all cases, a careful search for possible contributory factors (environmental, associated medical conditions, and so forth) is indicated. Weight loss and eating problems can be observed in various disorders (e.g., depression), and sometimes unusual beliers about food or eating are seen in other psychiatric conditions (e.g., schizophrenia). Diagnosis can be more complicated

are seen in other psychiatric conditions (e.g., schizophrenia). Diagnosis can be more complicated in individuals with autism and with cognitive disability.

**Treatment** Treatments vary depending on the specific of the situation and the nature of the difficulty. Some syndromes of intellectual disability are associated with eating problems. For pica and rumination disorder, various behavioral procedures have been used. In younger children, it is important to be sure that other medical problems or environmental factors do not complicate the situation. In anorexia nervosa and bulimia nervosa, treatment is topically multifaceted with outpatient

In anorexia nervosa and bulimia nervosa, treatment is topically multifaceted with outpatient treatment preferred if possible. Pharmacological treatments may be combined with cognitive behavior therapy approaches depending on the specific situation.

**See Also** ▶Asperger Syndrome ▶Cognitive Flexibility ▶Extreme Male Brain (EMB) Theory ▶Gender Differences ▶Pica ▶Rumination ▶Weak Central Coherence  **ECHO Autism STAT**  **Definition** ECHO Autism STAT is a training program for primary care providers (PCPs) that combines hands-on training in autism diagnosis with ongoing virtual mentorship using the Extension for Community Healthcare Outcomes (Project ECHO) framework.

**Historical Background** Early identification and diagnosis of autism spectrum disorder (ASD) are essential for facilitating access to intervention and services. Younger age at entry to intervention is associated with greater improvements across developmental domains for children with ASD (MacDonald et al. 2014; Perry et al. 2011; Smith et al. 2015; Vivanti et al. 2016). However, many children in the United States experience significant diagnostic delays, waiting an average of 3–6 years

in the United States experience significant diagnostic delays, waiting an average of 3–6 years between first concerns and ultimate diagnosis (Baio et al. 2018; Sheldrick et al. 2017; Oswald et al. 2017). This has resulted in large-scale federal and professional efforts to prioritize early identification of ASD (Filipek et al. 2000; Healthy People 2020; Interagency Autism Coordinating Committee 2017; Myers et al. 2007). Despite these efforts, the average age at ASD diagnosis remains between 4

2017; Myers et al. 2007). Despite these efforts, the average age at ASD diagnosis remains between 4 and 7 years for children in the United States (Baio et al. 2018). Shortages of healthcare providers with training in autism have contributed to these delays, with many local communities having no access to autism specialists. Lack of local autism expertise, long wait lists at specialty centers, and high costs of services have rendered best-practice care inaccessible for many families. Underserved

high costs of services have rendered best-practice care inaccessible for many families. Underserved children and families are disproportionately affected by these barriers. Children from families with low income or socioeconomic status, those living in rural areas, and those from minority racial and ethnic groups face even greater diagnostic delays (Fountain et al. 2011; Mandell et al. 2010; Mandell et al. 2002; Rosenberg et al. 2011). In 2007, the American Academy of Pediatrics (AAP) published

et al. 2002; Rosenberg et al. 2011). In 2007, the American Academy of Pediatrics (AAP) published guidelines recommending that autism screening be conducted at regular well-child visits in order to help expedite early diagnosis for all children (Myers et al. 2007). However, physician compliance with these guidelines has remained remarkably poor (Arunyanart et al. 2012; Keil et al. 2014; Self et al. 2015). Pediatricians and other primary care physicians report receiving very little formal

et al. 2015). Pediatricians and other primary care physicians report receiving very little formal training on autism during medical school or residency training (Fenikilé et al. 2015; Finke et al. 2010), and a lack of knowledge about autism and unfamiliarity with appropriate screening tools has been identified by PCPs as primary barriers to screening implementation in their practices (Fenikilé et al. 2015; Self et al. 2015). Even when children are appropriately screened and referred for further

al. 2015; Self et al. 2015). Even when children are appropriately screened and referred for further evaluation, significant wait times at specialty centers contribute to additional diagnostic delays. Given the importance of early intervention for young children with ASD, new models are needed to reduce diagnostic bottlenecks and to improve access to early diagnosis in local communities. Building local expertise among community-based providers who serve young children and families has the

local expertise among community-based providers who serve young children and families has the potential to reduce diagnostic delays and disparities for underserved families. Primary care providers (PCPs) offer accessible and integrated healthcare services and are tasked with conducting developmental surveillance and screening for all children. As such, they are perfectly positioned to help close the gap between first concerns and diagnosis, particularly if provided with additional knowledge and

gap between first concerns and diagnosis, particularly if provided with additional knowledge and tools for ASD assessment.

**Current Knowledge** The ECHO Autism STAT program was developed to reduce diagnostic delays by training community-based PCPs in underserved areas in screening and diagnosis of young children at highest risk for autism (Mazurek et al. 2019). The program combines hands-on training in standardized tools with ongoing virtual mentorship and practice, thus facilitating both timely diagnosis and appropriate referral for comprehensive assessment when necessary. The program builds upon and extends the

referral for comprehensive assessment when necessary. The program builds upon and extends the technology-based Project Extension for Community Healthcare Outcomes (Project ECHO) framework. Project ECHO was originally developed to increase access to treatment of hepatitis C virus infection by training community-based PCPs (Arora et al. 2010; Arora et al. 2011) and was more recently adapted for autism (Mazurek et al. 2017). Project ECHO’s technology-based mentorship model reduces geographic

autism (Mazurek et al. 2017). Project ECHO’s technology-based mentorship model reduces geographic barriers to specialty knowledge and is based on adult learning principles that maximize practical application and knowledge retention.

The ECHO Autism STAT model (Mazurek et al. 2019) follows a multitiered approach to diagnosis in which the assessment method is determined by the child’s symptom presentation and complexity. The program was designed to train PCPs in diagnosis of young children whose symptoms are unambiguous and in appropriate referral for complex cases that require more comprehensive assessment. The program begins with a 1.5-day face-to-face training focused on autism assessment and administration of the

begins with a 1.5-day face-to-face training focused on autism assessment and administration of the Screening Tool for Autism in Toddlers and Young Children (STAT), a standardized play-based observational autism assessment tool for very young children (Stone et al. 2000). After the in-person training, PCPs join bimonthly 90-min ECHO Autism STAT sessions for 12 months, during which participants are connected by videoconference with one another and with an interdisciplinary team of autism experts.

connected by videoconference with one another and with an interdisciplinary team of autism experts. The expert team includes a pediatrician, a psychologist, a child and adolescent psychiatrist, a social worker, a dietician, and a parent of a child with autism. Each session includes a brief didactic presentation, case-based learning (during which PCPs present their own cases for discussion and co-management), and collaborative guided practice. The curriculum focuses on best-practice guidelines

and collaborative guided practice. The curriculum focuses on best-practice guidelines for diagnosis and treatment of ASD, with specific emphasis on symptom identification, screening tools, diagnostic interviewing, differential diagnosis, parent support, community resources, and management of co-occurring symptoms.

Participants in the program receive in-depth training in administration and interpretation of both Level 1 and Level 2 autism screening and assessment tools. Strategies for implementation of general developmental and autism-specific screening tools are discussed throughout the 12-month program, and participants also engage in quality improvement efforts to track their success in implementation of these tools in their practices. For example, Level 1 tools include the Ages and Stages

of these tools in their practices. For example, Level 1 tools include the Ages and Stages Questionnaire, third Edition (ASQ-3); the Parents’ Evaluation of Developmental Status: Developmental Milestones (PEDS-DM); and the Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R), with Follow-up Interview. Following the in-person training on the STAT (a Level 2 tool), participants are required to achieve reliability in STAT coding and administration (including submission of videotaped

to achieve reliability in STAT coding and administration (including submission of videotaped recordings of their own administrations). Participants also receive training on diagnostic interviewing for autism and on providing feedback and guidance to families. Written and online guidelines, resources, and toolkits are made available to PCPs through a secure online portal.

In addition to formal didactic presentations, a large portion of the teaching and mentorship provided during ECHO sessions occurs within the context of case-based learning. The majority of time within each ECHO Autism STAT session is dedicated to discussion of de-identified cases presented by PCPs using a standard case presentation format. During the first 6 months of the program, PCPs discuss cases for which this is a concern of autism (screening) or cases for which there is a concern about

cases for which this is a concern of autism (screening) or cases for which there is a concern about symptom management. The expert team and all participants have opportunities to ask clarifying questions to learn more about the case and the presenter’s approach to date. Following this discussion, the expert team provides evidence-based recommendations and guidance to the PCP, building knowledge and expertise among all participants. PCPs may then re-present cases during later sessions to receive

expertise among all participants. PCPs may then re-present cases during later sessions to receive feedback and ongoing coaching. Over time, participants form a collaborative learning community in which expertise is shared and developed. In contrast to traditional telemedicine approaches, the ECHO model enables PCPs to retain responsibility for managing their own patients with guidance from the specialist team. Through this process, PCPs acquire knowledge, skills, and self-efficacy that is

specialist team. Through this process, PCPs acquire knowledge, skills, and self-efficacy that is directly applicable to their own practice.

During the second 6 months of the ECHO Autism STAT program, PCPs who have achieved reliability on the STATare eligible to present cases for diagnostic consideration. For these cases, PCPs follow a specific ECHO Autism STAT diagnostic algorithm to assess young children who are determined to be at risk for ASD following routine surveillance and/or Level 1 screening. Rather than referring the child to a specialty center for diagnostic evaluation, PCPs administer the STAT and a semi-structured

to a specialty center for diagnostic evaluation, PCPs administer the STAT and a semi-structured diagnostic interview for autism in their own practices. PCPs then present the results of the evaluation during an ECHO Autism STAT session. Cases are discussed with the expert team and all participants and are determined to either (1) clearly meet criteria of a diagnosis of ASD or (2) require further evaluation due to subtle or complex symptom presentation. This risk-stratified process for diagnostic

due to subtle or complex symptom presentation. This risk-stratified process for diagnostic determination facilitates rapid access to diagnosis and intervention for children at highest risk for autism while fostering access to more comprehensive assessments when warranted.

**Future Directions** The results of the initial ECHO Autism STAT pilot study indicated improvements in PCP practice and self-efficacy and demonstrated that the model is feasible for enhancing local access to early diagnosis for children at greatest risk for ASD (Mazurek et al. 2019). Future directions for the evaluation of this program should include validation of PCP diagnostic determination as compared to comprehensive assessment with gold-standard autism diagnostic instruments. Additional

compared to comprehensive assessment with gold-standard autism diagnostic instruments. Additional work is needed to develop and validate a process for verification of PCP mastery, competence, and readiness to complete evaluations independently of the ECHO Autism STAT program. An examination of effectiveness of this model in reducing time to intervention, increasing access to care, and reducing cost and burden for families of children with ASD will also be important. The ECHO Autism STAT program

and burden for families of children with ASD will also be important. The ECHO Autism STAT program represents one approach for reducing healthcare disparities for underserved children with or at risk for ASD by increasing local diagnostic expertise. Future work should continue to explore novel and flexible models that leverage technology to infuse autism expertise into local communities. Although building capacity for early identification and diagnosis in primary care is one important avenue,

building capacity for early identification and diagnosis in primary care is one important avenue, additional large-scale efforts are also needed to support community-based practitioners in caring for children with and at risk for ASD across settings and service systems.

**See Also** ▶Clinical Assessment ▶Medical Education on Autism ▶Screening Instruments for ASD ▶Screening Measures ▶Screening Tool for Autism in Two-Year-Olds (STAT)  **Echolalia**  **Synonyms** Delayed echolalia; Imitative speech; Immediate echolalia; Scripting  **Definition** Echolalia, either immediate or delayed, is the repetition of sounds, words, phrases, or larger chunks of language. It is a repetitive pattern of language that does not necessarily contain meaning, nor is it directed to

a repetitive pattern of language that does not necessarily contain meaning, nor is it directed to others for a specific purpose. Echolalia can be seen in individuals with various developmental disorders, including autism, Tourette’s syndrome, aphasia, and schizophrenia. Typical children who are developing language may demonstrate echoed speech between the ages of 12–30 months of age. Lovaas (1981) reported that in typically developing children, echolalia peaks at approximately 30 months. This

reported that in typically developing children, echolalia peaks at approximately 30 months. This pattern tends to fade as a child’s vocabulary and variety of language forms develop. For children with autism, however, the pattern can persist beyond 30 months and their repetitive talk may often be related to areas of special interest, media, or other environmental factors. Children may echo language used by people in their environment, or language heard within TVor songs. Research (Prizant and

used by people in their environment, or language heard within TVor songs. Research (Prizant and Duchan 1981) has shown that children and adults with autism may use echolalia for a variety of communicative purposes, such as a way to process language and improve their comprehension, as a means to initiate a conversation, or to form a reply. Echolalia is also thought to be a way for some children to cope with and “tune out” stressful situations. Immediate echolalia is the repetition of a word or

cope with and “tune out” stressful situations. Immediate echolalia is the repetition of a word or phrase directly following its utterance by another. For example, a child may repeat a question mother has just asked (Mother: “Do you want juice?” Child replies, “Do you want juice?”). Delayed echolalia is the repetition of words and phrases heard at some previous time, for example, a child may repeat an announcement heard at school the previous day (“Today we will be having a fire drill”). As

an announcement heard at school the previous day (“Today we will be having a fire drill”). As spontaneous language improves in children with autism, echolalia tends to decrease, as it does among typically developing children.

**See Also** ▶Movie Talk  **Ecological Inventory**  **Definition** An approach to identify functional, age-appropriate curriculum content a student needs in specific environments within the following curriculum domains: personal management, community, vocational, leisure, and school. The process involves five phases: (1) identify the curriculum domains, (2) identify current and future natural environments within each curriculum domain, (3) identify the sub-environments within the natural

environments within each curriculum domain, (3) identify the sub-environments within the natural environments, (4) inventory the relevant tasks within each sub-environment, and (5) analyze each task into component skills needed to perform the task from start to finish.

**Ecological Model of Autism**  **Definition** The ecological model of autism studies the behavior of individuals with autism within the context of many levels of environmental influence and assumes bidirectional influences between (a) the person and these environmental influences and (b) the many environmental levels. Context refers to the wide range of system levels that influence individuals with autism, including the immediate responses of caregivers and family, school, local community, as

autism, including the immediate responses of caregivers and family, school, local community, as well as broader cultural, economic, and political practices. Some variables have a direct immediate impact, and some more distal variables have an indirect impact. With the ecological model, the appropriate unit of study is the interaction of the environment and individual, the organism-environment system; “autism is not a static condition existing within a person, but a developmental process that

“autism is not a static condition existing within a person, but a developmental process that can only be understood as taking place through the interaction of person and environment” (Loveland 2001, p. 22). An essential element of the ecological model of autism “is that every level of the ecological system is interconnected and thus can influence all the other subsystems. These influences are reciprocal rather than unidirectional” (Weiss et al. 2010, p. xxv). Ecological models attempt to

reciprocal rather than unidirectional” (Weiss et al. 2010, p. xxv). Ecological models attempt to explain not only the immediate impact of caretaker/client interaction on the behavior of the individual with autism but also the impact of social and economic policies and the impact of those variables on one another.

**Historical Background** The ecological model of autism is a component of the broader interactional model that assumes many variables interconnect to produce an outcome. The transactional model is one type of interactional model used to study development. The primary assumption is that development is the outcome of dynamic interactions between the individual and many layers of the environment. The context of the environment ranges from variables near the individual to those that are quiet

The context of the environment ranges from variables near the individual to those that are quiet distant (Wicks-Nelson and Israel 2009). One type of transactional model is the ecological model. The comprehensive ecological systems theory emphasizes the importance of the context in understanding a person’s behavior (Bronfenbrenner 1979; Gibson 1979). Early behavioral models emphasize contextual variables such as discriminative stimuli and setting events, but the ecological model of autism

variables such as discriminative stimuli and setting events, but the ecological model of autism analyzes a broader range of environmental variables, from microsystems that include physical space, lighting, and noise in the teaching environment to broader cultural and historical events and the interactions between these variables.

**Current Knowledge** The ecological approach to treatment of autism requires a multidisciplinary treatment team to tailor services to the specific needs of the individual and their caretakers, so treatment is not limited to the individual and their family. Intervention extends to any ecological or contextual variable that affects the individual with autism. The ecological theory of autism may be conceptualized as a multidimensional series of concentric circles having the individual with

may be conceptualized as a multidimensional series of concentric circles having the individual with autism in the middle (Zigler and Stevenson 1993). Many investigators consider the critical autistic feature the inability of the individual to understand what others think or feel, a weakness in theory of mind. Broader developmental characteristics include observable operant behavior (both desirable and undesirable), cognition, neurological conditions, emotional behavior and mood, social

desirable and undesirable), cognition, neurological conditions, emotional behavior and mood, social behavior, communication skills, motor behavior, medical conditions, and sensory deficits. Molecular behavior includes the form of the response, duration, latency between antecedent and behavior, the time between responses, and the intensity of the response. The individual’s personal goals, preferences, and strengths are important considerations. The ultimate criterion “emphasizes that assessment

and strengths are important considerations. The ultimate criterion “emphasizes that assessment efforts and intervention objectives specifically target behavior that will be functional for the individual with a disability in real environments” (Powers 2005, p. 818).

The microsystem is the first level of the environment. This includes the minute-by-minute and day-to-day interactions between the individual with autism and caregivers (parents and teachers), peers, and siblings as well as the daily settings and physical structure of home, school, and community. Within these systems, it is critical to recognize the bidirectional effects of behavior; caretakers influence people with autism, but the stress of autistic behavior also influences caretakers, and

influence people with autism, but the stress of autistic behavior also influences caretakers, and stressful caretaker reactions can in turn affect the autistic behavior. For example, in response to unusual social and emotional behavior, caretakers of children with autism are more directive and may even smile less toward the children. Loveland (2001) contends the socially inappropriate behavior of individuals with autism is a product of both neurobiological impairment and the abnormal reactions

individuals with autism is a product of both neurobiological impairment and the abnormal reactions of significant others to the unusual social behavior. Furthermore, the abnormal feedback of others may affect neurological development (e.g., synaptic pruning) in the young child whose behavior then becomes more atypical, with the cycle revolving. At this level, the ecological unit of analysis may also examine coercive processes (Binnendyk et al. 2009; Patterson 1982). Such analyses may evaluate

also examine coercive processes (Binnendyk et al. 2009; Patterson 1982). Such analyses may evaluate whether inappropriate behavior is the outcome of positive reinforcement by attention, negative reinforcement by caretaker acquiescence, or exacerbated by repeated commands or reprimands for trivial behavior.

The determination of target behavior strengths and weaknesses selected for treatment is an important component, as practitioners must also consider whether the selected targets are meaningful to the family, day-to-day caretakers, and the community (Kazdin 1977). Behavior analysis of the microsystem would include operational definitions of selected target behaviors, distal setting events, antecedents that immediately precede the behavior (discriminative stimuli), and consequences that

antecedents that immediately precede the behavior (discriminative stimuli), and consequences that immediately follow the behavior (reinforcers and punishers). Ecological validity, or ecological assessment (Powers 1997), identifies whether the selected prosocial target behaviors are functional in the person’s day-to-day environment. For generalization of behavior across time and settings, selected target behaviors must be naturally functional (i.e., reinforced by the natural community) within

target behaviors must be naturally functional (i.e., reinforced by the natural community) within the microsystem, and care is taken to identify obstacles in the natural environment that may punish the selected behavior.

The physical structure of home, school, and community takes into account characteristics of the general setting such as large crowds, noise, and predictable schedules versus chaotic routines that may influence autistic behavior. For example, in the context of challenges presented to individuals with autism in the form of schedules and routines, Binnendyk et al. (2009) conceptualize the essential unit of analysis as the quality of parent-child interactions embedded within routines of everyday

unit of analysis as the quality of parent-child interactions embedded within routines of everyday life. The quality of family interactions within these routines may have a “profound” impact on the child’s development. Family-selected routines that have served as the basis for routine-specific treatment plans include bathroom routines, restaurant routines, dining at home, dining at a restaurant and fast food establishments, grocery shopping, family television time, and bedtime.

Other units of analysis go beyond the behavior of the individual person and require myriad sources of data from larger social systems. The next level of the environment is the mesosystem, representing the interactions across the individual’s microsystem. Variables that influence the individual with autism include parents’ marital strain, extended family relationships, the reciprocal relationships between parents and teachers, parents and siblings, teacher and school, etc. For example,

between parents and teachers, parents and siblings, teacher and school, etc. For example, interpersonal conflict between parents and teachers or parents and siblings may have an effect on the behavior of the individual with autism, and if this were determined to be the case, an ecological approach will consider that conflict a variable that needs to be addressed as part of treatment. Sometimes, the highly sophisticated practices of treatment workers contrast with parent training intellectually

highly sophisticated practices of treatment workers contrast with parent training intellectually limited family members at home. If these contrasting styles prevent adequate application of services in the home setting, then an ecological approach will consider that disconnect a variable that needs to be addressed as part of treatment.

Contexts that influence the child indirectly compose the exosystem of the ecological system. The exosystem influences the child indirectly by effecting institutions and people in the individual’s microsystem. For example, a parent may lose a job or be transferred to employment in another state. The stress of parental unemployment or moving to another state with concomitant schedule and routine changes may influence the behavior of the individual with autism, especially an individual whose

changes may influence the behavior of the individual with autism, especially an individual whose repertoire includes resistance to change or well-established rituals. Structural changes within social service agencies that provide counseling and family support may lead to new treatment workers who are required to relearn details of the family’s goals and objectives and establish new relationships, all of which can affect the individual with autism. Other exosystems that do not include the person

all of which can affect the individual with autism. Other exosystems that do not include the person with autism but can influence them include parent social networks, socioeconomic status of the family and neighborhood, the availability of mental health services in the community, the availability of professional training in empirically validated practices for service providers, the availability of materials and human resources required to meet the needs of the child (Lovaas 2003), and the

of materials and human resources required to meet the needs of the child (Lovaas 2003), and the availability of follow-up care and respite as needed.

In recognition of the growing diversity of the family unit, an ecological analysis also includes a subjective understanding of a family’s values and beliefs. This allows treatment plans to consider culturally sensitive interventions when collaborating with families, sometimes referred to as cultural competence (Lynch and Hanson 2004). The broadest level of influence composed of the culture’s values, the economy, political trends, and social policy is the macrosystem. Resources for the family

the economy, political trends, and social policy is the macrosystem. Resources for the family and school, tolerance of individual differences, and general opportunities afforded individuals with autism are greatly influenced by the macrosystem. State and federal law has mandated a number of recent social policy trends. In 1990, the US Congress added the word “autism” to laws that guarantee special education services. The Individuals with Disabilities Education Act, the federal law pertaining to

education services. The Individuals with Disabilities Education Act, the federal law pertaining to special education, was reauthorized in 1997 (National Dissemination Center for Children with Disabilities), and both of these acts have resulted in more educational/treatment services to children with autism and more inclusion in less segregated (and less restrictive) general school settings. At the same time, economic conditions in the 2010s may lead to reduced local school budgets and reduced

same time, economic conditions in the 2010s may lead to reduced local school budgets and reduced educational services. Many states in the USA have passed laws requiring state-regulated group health plans to include coverage for autism, and federal law prohibits insurance companies from refusing to issue or renew coverage for children because of pre-existing conditions including autism. The outcome for families of children with autism includes monetary saving and less emotional stress, with

for families of children with autism includes monetary saving and less emotional stress, with children eligible for a wide array of services.

The chronosystem signifies time both within the lifetime of the individual of interest and the historical context within which the person lives (Weiss et al. 2010). Over the course of time, the child and family’s growth and learning can affect each of the above-described systems. Furthermore, the historical context within which the person lives influences the services available to that person. Compared with individuals living prior to 1980, much has changed for individuals with autism. One

Compared with individuals living prior to 1980, much has changed for individuals with autism. One critical difference is how the definition of autism presented in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM, American Psychiatric Association [APA], 1980, 1994, 2000) has changed. Although Kanner identified autism in the 1940s, it was not until 1980 that criteria for autism were defined in the DSM. Since then, the phrasing to describe autism

1980 that criteria for autism were defined in the DSM. Since then, the phrasing to describe autism has become far less restrictive. The 1980 DSM required six mandatory criteria with phrasing that limited the number of people diagnosed with autism (e.g., “A pervasive lack of responsiveness to other people” in the 1980 DSM is replaced by “Lack of spontaneous seeking to share. . . achievements with other people”). In conjunction with the 1994 inclusion of Asperger’s disorder in the DSM, the

with other people”). In conjunction with the 1994 inclusion of Asperger’s disorder in the DSM, the acknowledgment that autism can exist among people across the entire range of intelligence, and recent efforts to take advantage of neural plasticity by identifying and providing comprehensive treatment among the youngest children with autism, the number of people on the autism spectrum eligible for services has expanded greatly. Perhaps three fourths of those diagnosed with autism are accounted

services has expanded greatly. Perhaps three fourths of those diagnosed with autism are accounted for by those diagnosed with milder variants (Chakrabarti and Fombonne 2001), and only 35 years ago, many of these people would not have been eligible for services.

Ultimately, ecologically sensitive interventions synthesize data from multidisciplinary sources to develop a holistic intervention that addresses the individual with autism, their caretakers, the physical structure of important settings, and cultural variables.

**See Also** ▶Advocacy ▶Classroom Structure ▶Clinical Assessment ▶Ecological Inventory ▶Ecological Validity ▶Family Therapy ▶Functional Ecological Approach  **Ecological Validity**  **Synonyms** External validity  **Definition** Ecological validity is the degree to which experimental measures (i.e., settings, treatment agents, materials, behaviors) occur naturally and are representative of events that occur in everyday life or in the settings in which the skill or behavior is expected to be

that occur in everyday life or in the settings in which the skill or behavior is expected to be performed (Brewer 2000; Schlosser 2003). The results of an ecologically valid assessment are predictive of appropriate behavior in a free environment (Franzen 2000). Ecological validity is important for descriptive or demonstrative research (Brewer 2000) and is an aspect of external validity that is closely related to, but not to be confused with, social validity (Schlosser 2003).

**See Also** ▶External Validity  **Edinburgh Handedness Inventory**  **Synonyms** EHI  **Description** The Edinburgh Handedness Inventory (Oldfield 1971) is a measurement scale which is employed to establish hand dominance. The 20-item inventory contains a list of instructions to be carried out by the individual being assessed. Items are rated by direct observation of the individual’s behavior or by self-report of everyday behavior. Oldfield developed a second, shorter version, namely, a

or by self-report of everyday behavior. Oldfield developed a second, shorter version, namely, a 10-item inventory, and it is this form which has been used most often. This brief quantitative measure has proved to be of use in neuropsychological, general, clinical, and research fields. However, where the question of establishing laterality is critical, such as in research, the author has reported that this scale used on its own is not sufficient to determine cerebral laterality and is

reported that this scale used on its own is not sufficient to determine cerebral laterality and is effectively best employed as a screening measure. Given its simplicity and brevity, it would be particularly useful where large populations are being assessed. The measure benefits from properties which provide a useful standard of comparison in the neuropsychological field. The EHI is the most widely used instrument to measure handedness, and this appears to have increased in recent years (Fazio

used instrument to measure handedness, and this appears to have increased in recent years (Fazio et al. 2011; Fazio and Cantor 2015). Furthermore, the measure has been translated into a number of languages, and the psychometric properties of translated versions have been established (Albayay et al. 2019; Espirito-Santo et al. 2017; Yang et al. 2018). Oldfield (1971) strongly urges clinicians and researchers to follow the instructions closely in order to ensure limitation of misinterpretation

researchers to follow the instructions closely in order to ensure limitation of misinterpretation and to ensure the form is completed correctly. However, Fazio et al. (2011) found that the original instructions were in fact problematic and only 47.3% of individuals in their study were able to follow the instructions completely. By contrast, 88.2% of these individuals could successfully follow the instructions on a different measure with Likert-style presentation. The authors note that the level

instructions on a different measure with Likert-style presentation. The authors note that the level of education and the handedness of the participants significantly predicted their ability to adhere to the instructions which had clear implications for the use of the Edinburgh Handedness Inventory.

Where individuals are being required to complete the form (self-reporting rather than being observed in a clinical setting), they are presented with a typed sheet and instructed to provide information regarding age and biological sex. The original inventory asks whether they have ever had a tendency to left-handedness. Individuals are then presented with a list of ten items to score. They are instructed to consider their hand preference for each activity, indicating with one plus (+) if the

instructed to consider their hand preference for each activity, indicating with one plus (+) if the preference is for the left or right hand. If they are indifferent, a plus is placed in both L and R columns. “Where the preference is so strong that you would never try to use the other hand unless absolutely forced to, put ++” (Oldfield 1971). Since some tasks require two hands (e.g., striking a match), they are asked to indicate the hand preference for the key object, e.g., the match. All items

they are asked to indicate the hand preference for the key object, e.g., the match. All items are scored unless the individual has no experience of a task or object at all. A laterality quotient (LQ) is obtained by (R – L)/(R + L) 100 where R ¼ number of ticks in the right column and L ¼ number of ticks in the left column. Interpretation of results: Left-handed <40 Ambidextrous 40 to +40 Right-handed > +40 While the core instrument has remained in use, various authors appear to have made

> +40 While the core instrument has remained in use, various authors appear to have made adjustments to the instructions and presentation of the form. In addition, some authors have added further questions, e.g., holding a computer mouse (Cohen 2008; Dragovic 2004b), holding a cup for drinking, and using a key to unlock a door (Cohen 2008). Williams (1986) proposed a revision of the EHI resulting in changes to the number of items tested – reducing these from ten to seven – and consistent with

in changes to the number of items tested – reducing these from ten to seven – and consistent with Dragovic’s suggestion (2004b), adding the item computer mouse. He argues that two items (opening a box and using a broom) have been discarded since new factor-analytic studies found these items to be low outliers when loaded onto the “handedness” factor. The computer mouse is viewed as a significantly “unimanual activity in today’s world” (Williams 1986). The EHI (revised) proposes the adoption of

“unimanual activity in today’s world” (Williams 1986). The EHI (revised) proposes the adoption of a Likert-style format, thus reducing the wording in the instructions to “Please mark the box that best describes which hand you use for the activity in question.” For each item, the respondent hence selects from five possible options, namely, always left, usually left, no preference, usually right, and always right. The procedure for arriving at the laterality quotient (LQ) is by necessity adjusted

always right. The procedure for arriving at the laterality quotient (LQ) is by necessity adjusted and can be used to identify those individuals who are mixed-handed (LQ between +50 and 50). Scoring is as follows: “- 50” always left, “- 25” usually left, “0” no preference, “25” usually right, and “50” always right. Scores on the eight rows are summed to provide a score LQ of 400 to +400. If the LQ score is then divided by 4, an LQ of 100 to +100 is achieved, i.e., complete left-handedness to

LQ score is then divided by 4, an LQ of 100 to +100 is achieved, i.e., complete left-handedness to complete right-handedness as per the original EHI. With the revised scoring method, 200 to +200 becomes mixed-handedness. Williams describes a clinical observation that the mixed-handedness group may further divide into two, namely, clumsy or coordinated. He anticipates that the clumsy group may have an LQ score of 200 to 1 and the coordinated group an LQ of 0–200.

**Historical Background** When first published in 1971, the Edinburgh Handedness Inventory was initially named the Edinburgh Inventory (Oldfield). Previous assessment of handedness relied on either (a) observation of the individual carrying out tasks (seminovel) with left or right hands separately or (b) posing a number of questions about day-to-day activities and the hand use in these. In the former, the individual’s performance may be rated on time and/or error, enabling the calculation of

former, the individual’s performance may be rated on time and/or error, enabling the calculation of an index of handedness. The EHI has been used extensively in research (Boucher 1977; Dragovic 2004a, b; Cohen 2008; Edlin et al. 2015; Escalante-Mead et al. 2003; Fazio et al. 2011; Fazio and Cantor 2015; Williams 1991). Oldfield developed a 20-item and a 10-item version of the EHI. When the 10-item version was compared to Annett’s 12-item scale (1970), Williams found that, owing to the

10-item version was compared to Annett’s 12-item scale (1970), Williams found that, owing to the instructions, the EHI produced more “either hand” responses when usually the “left hand” would be the response (1991). He suggested that where neuropsychological researchers were looking to detect any degree of left-handedness, the questionnaire by Annett might be preferable. While the EHI has remained a well-used instrument to establish handedness, it has been adapted by a number of authors,

a well-used instrument to establish handedness, it has been adapted by a number of authors, primarily adjusting the presentation of the recording system and simplifying the instructions which have been deemed too complicated and potentially confusing for testees (Dragovic 2004b; Fazio et al. 2011; Cohen 2008). However, Edlin et al. (2015) conducted a review of 899 articles (1998 to 2012) citing use of the EHI and found highly variable usage of the measure and ad hoc adaptations rendering

use of the EHI and found highly variable usage of the measure and ad hoc adaptations rendering replication of research challenging. Lateralization in autism has been of interest to scientists for many years, and the EHI has been employed in studies researching cerebral dominance and language development in individuals with autistic conditions (Boucher 1977; Froehlich et al. 2011; Williams 1986, 1991).

**Psychometric Data** The Edinburgh Handedness Inventory has been refined since the original 20-item questionnaire in 1971. Oldfield discarded those items found to be redundant or inappropriate, given the purpose of devising a measure that would have universal application. He conducted a study of the 20-item inventory on 1,100 students. Analysis of items on the basis of biological sex, socioeconomic, and cultural factors resulted in ten items being discarded, leaving the inventory in its

and cultural factors resulted in ten items being discarded, leaving the inventory in its current form. On analysis of 1,027 responses (360 males and 667 females) where a score < 0 denotes left-handedness, 10% of males and 5.92% females scored <0 (chi-squared ¼ 6.21, p < 0.02). The authors noted the difficulties conducting statistical analyses on the data owing to the nature of the frequency distribution (a U form with the left side only containing about 10% of the total population). Treating

(a U form with the left side only containing about 10% of the total population). Treating the sections separately with the LQ cut at zero, percentage cumulative curves could be represented as the “right-handed” and “left-handed” sections, respectively. While the “right-handed” section could be represented in decile values, the “left-handed” section was less regular. The author notes that larger numbers will be needed in future studies to establish larger frequency values for the left-handed

numbers will be needed in future studies to establish larger frequency values for the left-handed group. Hence, decile values remain provisional.

In a study of hand preference in the parents of autistic children, a similar pattern of results was found with 5.9% males and 0% females using the left hand more than the right (Boucher 1977). In Oldfield’s student sample, 10% of those who predominantly used their right hand showed a very marked (LQ ¼ 95–100) or almost exclusive preference. In Boucher’s study, 69.1% of males and females who preferred the right hand used this almost exclusively. “Pure” right-handedness was significantly

preferred the right hand used this almost exclusively. “Pure” right-handedness was significantly different between the groups at the p < 0.001 level on Guilford’s test of the difference between two proportions. These unexpected results were nonetheless confounded by concerns regarding the reliability of the EHI and the possibility that some participants did not fully follow the instructions. Evaluation of handedness in the autistic children of these parents, on the other hand, indicated a

Evaluation of handedness in the autistic children of these parents, on the other hand, indicated a persistent, but slightly increased tendency of autistic children to use the left hand.

McMeekan and Lishman’s study (1975) compared the EHI (10-item) with the 12-item Annett questionnaire. The test-retest reliability results were unexpectedly moderate (0.80), but Williams notes (1991) a number of potentially significant methodological factors which most likely affected the results. On retesting with the EHI, participants often changed the classification from strong to weak. Williams does state that the EHI has one particular difficulty in the procedure employed for deriving the

does state that the EHI has one particular difficulty in the procedure employed for deriving the laterality quotient (LQ). Employing the equation, (R- L)/ (R + L), it is possible to achieve an LQ score of 100 in two ways: if there are 10–20 ticks in the R column, but none in the L column. In other words, there is no ability to discriminate between degrees of right-handedness. The issue of weighting of inventory items is also of some concern with no justification for equal weighting of some

of inventory items is also of some concern with no justification for equal weighting of some items and double weighting of items scored with two ticks. Williams (1991) notes that Annett’s designation of “primary” and “secondary” items facilitates more sophisticated statistical discrimination.

Fazio and Cantor (2015) compared the factor structure of the EHI with the Fazio Laterality Inventory (Fazio et al. 2013). They found the FLI to provide a more accurate measurement of handedness. When tested in a population of atypical handedness, factor analysis of the EHI demonstrated a single factor loading, while factor analysis of the FLI elicited two underlying factors (eigenvalues >1; 5.74 and 1.39). The authors describe the factors as fine motor/ballistic movements and

>1; 5.74 and 1.39). The authors describe the factors as fine motor/ballistic movements and expressive/instrumental movements. They argue that while both the FLI and EHI have good face and construct validity in typical handedness populations, the former is more helpful in measuring handedness in populations that are associated with atypical handedness.

**Clinical Uses** The Edinburgh Handedness Inventory (Oldfield 1971) is used to assess hand dominance in everyday activities. The measure may be rated by an observer or by the individual’s self-reporting. The author viewed the latter as less reliable since individuals tend to overestimate the number of tasks carried out using the dominant hand. Nonetheless, for ease of use, clinicians and researchers predominantly employ a questionnaire-based assessment of handedness over performance-based

predominantly employ a questionnaire-based assessment of handedness over performance-based measures (Williams 1991). Such questionnaires have demonstrated themselves to be highly correlated with behavioral measures (Chapman and Chapman 1987). Establishing hand preference may shed light on how the brain matures. Laterality has been demonstrated to be of importance in autism spectrum conditions, language, mathematical, and musical ability. For instance, in a study of early language disturbance

language, mathematical, and musical ability. For instance, in a study of early language disturbance and lateral preference (on the Edinburgh Handedness Inventory), researchers found that autistic individuals who had early language disturbance displayed more atypical cerebral dominance than neurotypical controls and autistic individuals who had had normal language development (Escalante-Mead et al. 2003). Results indicated that there was not in fact a greater incidence of left-handedness in

al. 2003). Results indicated that there was not in fact a greater incidence of left-handedness in autism, but rather a disturbance in the developmental process of establishing lateral dominance. An atypical pattern or delay in establishing cerebral dominance may have implications for language development in autism. The Edinburgh Handedness Inventory remains a valuable tool in clinical neuropsychology. Additional measures may contribute to further understanding of handedness in populations known

Additional measures may contribute to further understanding of handedness in populations known to be neurologically atypical.

**Education**  **Definition** Autism spectrum disorder (ASD) is characterized by communicative, social, and behavioral impairments. Specifically, the two major categories of deficits are in social communication and repetitive behaviors (American Psychiatric Association 2013). These issues can make it difficult for children with ASD to succeed in traditional educational settings. However, many children can progress and even excel with the proper support. To ensure that children with ASD have

children can progress and even excel with the proper support. To ensure that children with ASD have access to this support, federal legislation requires that public schools provide eligible children with ASD an education that is adapted to meet their individual needs (Steedman 2007). Since students with ASD have different strengths and deficits, their educational programs may look very different. Researchers and professionals have used research, legislation, and professional experience to

Researchers and professionals have used research, legislation, and professional experience to develop ASD program quality indicators (Alquraini 2011; Crimmins et al. 2001; Ruble et al. 2010). These indicators include comprehensive student assessment, ongoing progress monitoring, assessment-based and detailed individualized education plans (IEPs), individualized and appropriate curricula and instructional methods and activities, procedures for assessing and replacing challenging behaviors,

instructional methods and activities, procedures for assessing and replacing challenging behaviors, qualified and appropriate school personnel, and high levels of family involvement (please see the section “Current Knowledge” for more information).

**Historical Background** In the past, students with ASD and other disabilities were often denied access to a public education. It was not until the 1960s and 1970s that the states and Congress passed legislation intended to protect children with disabilities right to a free and appropriate public education (Yell et al. 1998). Unfortunately, many children with disabilities continued to receive none or inappropriate educational services after these legislative changes (Steedman 2007). In an

none or inappropriate educational services after these legislative changes (Steedman 2007). In an effort to better serve children with disabilities, the federal government enacted the Education for All Handicapped Children Act of 1975 (EAHCA; Yell et al. 1998). This act was designed to provide all children with disabilities more extensive educational rights. In 1990, this act was amended and renamed the Individuals with Disabilities Education Act (IDEA). IDEA continues to undergo revisions

renamed the Individuals with Disabilities Education Act (IDEA). IDEA continues to undergo revisions designed to better protect these rights and facilitate the success of children with disabilities. It was most recently amended in 2004, with final regulations published in 2006 and 2011 (US Department of Education 2017). IDEA 2004 promises all children an appropriate education, but there continues to be debate concerning the extent and quality of services that schools are required to supply.

to be debate concerning the extent and quality of services that schools are required to supply. Further, many schools report that they lack the funds and resources required to provide students with appropriate services (Block and Block 2007; please see the section “Current Knowledge” for more information). Several Supreme Court cases have also been instrumental in further clarifying and adapting elements of IDEA 2004. One Supreme Court ruling in particular, Winkelman v. Panama School District

elements of IDEA 2004. One Supreme Court ruling in particular, Winkelman v. Panama School District (2007), has been identified as one the of the most important Supreme Court rulings impacting the United States’ special education system (Yell et al. 2009). In their ruling of this case, the Supreme Court expanded the definition of free and appropriate public education (FAPE) under the IDEA 2004 to allow parents the right to be involved in all aspects of their child’s education, including the IEP

allow parents the right to be involved in all aspects of their child’s education, including the IEP process (Yell et al. 2009).

**Current Knowledge** The Individuals with Disabilities Education Act (IDEA) of 2004 requires school districts to provide eligible individuals with ASD and other disabilities ages 3–21 with a free and appropriate education. This education should be designed around the students’ individual strengths and deficits. Each student’s program should include the special education and other services the student needs to make progress and should be delivered in the least restrictive environment possible.

needs to make progress and should be delivered in the least restrictive environment possible. The program should target the skills that the student needs to achieve independent functioning, continue his or her education, and succeed in the workforce. Each of these main components is briefly described below.

**Individualized and appropriate education** Although children with ASD share common areas of deficit, there is considerable variation in individual students’ abilities and impairments. Because of this heterogeneity, no single educational program will benefit all students with ASD. IDEA recognizes this and requires that each student receive an education designed to build upon his or her strengths and address his or her deficits. Each student’s educational program must be detailed in an

and address his or her deficits. Each student’s educational program must be detailed in an individual education plan (IEP). This plan should be developed by a multidisciplinary team including school personnel, relevant professionals (e.g., an ASD specialist, speech and language pathologist, or occupational therapist), and the student’s parents. The IEP should describe the student’s current abilities, his or her goals for the next year, and the specific services and accommodations that the child

his or her goals for the next year, and the specific services and accommodations that the child will receive to facilitate his or her progress. The IEP team must meet to review and update the IEP at least once a year. Parents or school staff can request additional IEP meetings any time that they feel the plan is not meeting the student’s needs.

**Special education and other services** IDEA requires that eligible students with ASD receive the special education and related services that they need to benefit from their educational program. Special education refers to any curricular or instructional modifications that the child needs to progress. Related services refer to any additional support that will help the child to succeed. For children with ASD, speech therapy, occupational therapy, and transportation to and from school are

children with ASD, speech therapy, occupational therapy, and transportation to and from school are common related services (Steedman 2007). When developing these special education and other services, the schools are required to use evidence-based practices (Odom et al. 2010). In other words, the school should use instructional practices or interventions that have received empirical support. Using educational strategies that have been found to benefit at least some children with ASD is believed

educational strategies that have been found to benefit at least some children with ASD is believed to increase the likelihood that this intervention will benefit the current student with ASD (Morris and Mather 2008). Considerable debate remains over the extent and quality of services that schools are required to provide. The Supreme Court ruled that schools may not deny a child services based on the cost. However, the Supreme Court has also declared that schools do not have to offer children

the cost. However, the Supreme Court has also declared that schools do not have to offer children with disabilities the best education possible. Instead, services must allow children to “benefit” from their education (Steedman 2007). In addition, the State Education Agencies’ definition and corresponding evaluation of ASD has become problematic in recent years (Pennington et al. 2014). These definitions have differed by state, impacting which individuals qualify for special education and other

have differed by state, impacting which individuals qualify for special education and other services. Pennington et al. (2014) suggests that state and federal policy changes should be made to improve the definition of and the evaluation procedures used to assess ASD as an educational disability.

**Least restrictive environment** IDEA states that each student’s educational program should be implemented in the least restrictive environment possible (Alquraini 2011). Whenever possible, the student’s special education and other services should be delivered in general education classrooms with typically developing peers. However, the IEP team must determine which type of placement best facilitates the academic, social, and behavioral progress of the student. Placement options include

facilitates the academic, social, and behavioral progress of the student. Placement options include inclusion, special education, and mainstreaming. Inclusion is the least restrictive environment possible. Inclusion is generally defined as placement in a general education classroom with neurotypical peers, while providing additional services as needed (Alquraini 2013). These services can be provided within the general education classroom (i.e., push-in services) or outside of the classroom

within the general education classroom (i.e., push-in services) or outside of the classroom (i.e., pull-out services). Advocates of inclusion argue that this environment provides students with ASD more rigorous academic instruction and increased access to appropriate peer models and interactions. However, others contend that general education classrooms do not meet the special learning needs of students with ASD. Placement in a special education classroom is considered a more restrictive

of students with ASD. Placement in a special education classroom is considered a more restrictive environment. Special education classrooms are populated by students with disabilities. They tend to contain fewer students and have a higher adult to child ratio. Teachers typically tailor their instruction to the special needs of their students. These classrooms may provide a more supportive environment for the students, but are often believed to be less academically rigorous and provide fewer

for the students, but are often believed to be less academically rigorous and provide fewer opportunities for typical peer models and interactions. Students with ASD may also be mainstreamed, spending part of their day in a special education classroom and part of their day in a general education classroom (Mesibov and Shea 1996). This placement allows children to receive more individualized special education instruction while also exposing them to typical curricula and peer models. However, the

education instruction while also exposing them to typical curricula and peer models. However, the desired benefits to simply exposing children with ASD to neurotypical peers is unclear.

**Program Quality Indicators** As previously noted, it is not possible to develop a single “best” program for students with ASD. However, researchers and professionals have used existing research and their professional experience to develop a number of program quality indicators or components of effective programs. Several of these components are described below; however, this list is not exhaustive. For full lists and comprehensive descriptions of program quality indicators, please see

exhaustive. For full lists and comprehensive descriptions of program quality indicators, please see Colorado’s Autism Program Quality Indicators (Colorado Department of Education 2016) and the cited references. The National Autism Center (2009, 2015) also provides information on the quality of ASD programs currently being implemented in schools.

**Child assessment** Assessments allow educators to identify the strengths and deficits of children with ASD. Assessments should be comprehensive, with measures of the child’s social and language skills, academic skills, adaptive and maladaptive behaviors, and cognitive abilities across settings. The selected assessments should provide information that can be used to inform the student’s educational program (Crimmins et al. 2001).

**Individualized education programs** The IEP should state the student’s current level of functioning across communicative, social, academic, and developmental domains in school, home, and community settings. This information should be used to formulate new, measurable goals that will facilitate the child’s success and independence across skill domains and environments. The IEP should specify the special education and related services that will be used to promote student progress (Steedman

the special education and related services that will be used to promote student progress (Steedman 2007). These may include parent services or training that will help the parents facilitate child progress in home and community settings. These services and accommodations should be detailed so that all parties (e.g., parents, school staff) understand their roles and responsibilities (New Jersey State Department of Education 2004). For added clarity, Ruble et al. (2010) developed an evaluation

State Department of Education 2004). For added clarity, Ruble et al. (2010) developed an evaluation tool to assess whether IEP’s are consistent with the requirements put forth by IDEA and the National Research Council for children with ASD.

**Progress monitoring** Effective programs should include ongoing and systematic measurement of individual student progress towards set IEP goals. The information gained from progress monitoring should be used to make appropriate educational decisions. When a student meets a set goal, the educational team should develop new goals to further facilitate child progress. When a student does not progress towards meeting a goal, the educational team should consider adjusting the method or intensity

towards meeting a goal, the educational team should consider adjusting the method or intensity of the student’s current program to better meet his or her needs (Crimmins et al. 2001; New Jersey State Department of Education 2004). Precision teaching is one approach to measuring a student’s progress (Please see the ▶“Precision Teaching” chapter for more information).

**Curriculum** Each student’s educational program should focus on the skills that he or she needs to achieve independent functioning, continue his or her education, and succeed in the workforce. Therefore, educational programs should address a wide range of skills, including communication and social skills, adaptive skills, academic skills, and, for older students, vocational skills (Please see the ▶“Curriculum” chapter for more information). The specific content of each student’s educational

the ▶“Curriculum” chapter for more information). The specific content of each student’s educational program should be based on his or her current functioning level and be adjusted as needed. Whenever appropriate, the curriculum should integrate age-appropriate state standards (New Jersey State Department of Education 2004; Noland et al. 2007).

**Instructional methods and activities** Whenever possible, instructional methods and activities should be research-based. Methods and activities should be adapted to the strengths of the child with ASD. Skills should be targeted within appropriate instructional formats (e.g., individual, small-group, or large-group instruction). When appropriate, skills should be targeted via naturally occurring opportunities and reinforcers. Programs should include components designed to promote independent

opportunities and reinforcers. Programs should include components designed to promote independent skill use, generalization across people and settings, and maintenance (Crimmins et al. 2001; New Jersey State Department of Education 2004).

**Challenging behaviors** Children with ASD often demonstrate stereotypic, disruptive, or self-injurious behaviors (Lopez et al. 2007). Programs should have a process for systematically assessing the function of these behaviors (e.g., functional assessments). This information should be used to develop a plan to eliminate the challenging behaviors and replace them with more adaptive behaviors (Crimmins et al. 2001; New Jersey State Department of Education 2004). A focus in recent years has

(Crimmins et al. 2001; New Jersey State Department of Education 2004). A focus in recent years has involved implementing more positive behavioral interventions and services (PBIS) in schools, in an effort to reduce students’ challenging behaviors (Kauffman 2015).

**School personnel** School staff (e.g., teachers, other service providers, paraprofessionals) should be educated on the needs and strengths of students with ASD, effective educational practices, methods of individualizing educational programs to meet each student’s needs, and behavior management and naturalistic teaching strategies. All staff should attend professional development workshops. Paraprofessionals, who tend to have less knowledge and experience, should receive continuous

Paraprofessionals, who tend to have less knowledge and experience, should receive continuous supervision and instruction from classroom teachers and other personnel. The program should have enough personnel (teachers, aides, therapists, etc.) to meet the needs of the students. Personnel should be familiar with each student’s IEP and be aware of their role in its implementation (Crimmins et al. 2001; New Jersey State Department of Education 2004; Noland et al. 2007).

**Family involvement** Legally, schools are required to include parents in the development of the student’s educational program (Yell et al. 2009). Involving parents and family members in the development, implementation, and revision of the student’s program is believed to increase program effectiveness. Therefore, the school should make an effort to inform or refer parents to information on available services and their student’s program and progress. Parents should also be given support and

services and their student’s program and progress. Parents should also be given support and training that allows them to better meet their student’s needs in home and community settings. Student’s programs should be developed with consideration of the family’s beliefs and values (Crimmins et al. 2001; New Jersey State Department of Education 2004).

**Sample Schedule and Activities** A sample special education classroom schedule, activity descriptions, and recommendations are provided below. The activities can be adjusted to meet the individual needs of each student. Consulting activity schedules. Activity schedules are a great way to prepare the student for the day’s activities and transitions and to increase independence (Koyama and Wang 2011). Using visual activity schedules with students on the spectrum is considered an evidence-based

Using visual activity schedules with students on the spectrum is considered an evidence-based practice (Knight et al. 2015). Each classroom should have a clearly visible general schedule, and each student should have an individual schedule detailing his or her specific activities for the day. Depending on the student’s level of functioning, a schedule could be a written list or involve pictures.

**Opening circle** Opening circle is a good time to target communication skills and attending in a large-group setting. Opening circle activities may include calendar time, singing songs, or sharing about a given topic (e.g., what students did over the weekend or favorite ice cream flavor). This type of activity can be implemented with young children with ASD during the preschool and elementary school years. It is not commonly implemented in middle or high school settings.

**Individual work time** Individual work time should focus on each student’s IEP goals. The following steps should be taken to maximize on-task behavior and correct responding.

*   Structuring the work environment. Individuals with ASD benefit from a structured work environment (Bennett et al. 2011). Structuring the work environment may include a work area with minimal distractions, clearly presenting the demand, visual instructions, and immediately reinforcing a correct response with praise, tokens, or tangible reinforcers (Ganz 2007).

*   Brief stimulus assessment task. To ensure that each student is motivated, a brief stimulus assessment should be conducted at the beginning of each work session to identify items that can be used as reinforcers. In a brief stimulus assessment task, students are presented with a number of potential reinforcers, and the first items they choose are considered the preferred items. These items should then be used during the following work session (Paramore and Higbee 2005).

*   Varying maintenance and acquisition tasks. During individual work time, the one-to-one aide should present the student with a mix of maintenance and acquisition tasks (Benavides and Poulson 2009; Charlop et al. 1992). For example, if a student is learning expressive language and categories but has already mastered receptive body parts, a work session should include trials on all three tasks.

*   Using an appropriate level of prompting. As students acquire a given task, they will need different levels of prompting or support. Teachers and aides should give the student the minimal prompt necessary to help them succeed at the given task.

*   Using a variety of preferred reinforcers. To make sure that the student stays motivated and does not grow bored with their reinforcer, the student should be reinforced with different preferred items throughout the session (Milo et al. 2010; Polín and Pérez 2017).

*   Incorporating naturalistic teaching opportunities. The classroom provides a number of opportunities for naturalistic teaching strategies, such as incidental learning. Preferred toys may be placed on high shelves or in clear, hard to open bins so that the student must ask for them. Using naturalistic teaching strategies in the classroom promotes generalization and spontaneous use (Charlop 2017).

**Lunch time** Meals are ideal times to provide natural learning opportunities. For example, instead of automatically providing a student with his or her food, the teacher or aide may wait for the student to request that the food be passed to them.

**Small-group time** Small-group time is the perfect time to practice communication and social skills in a fun, motivating environment. Teachers or classroom aides can facilitate peer interactions during a variety of desired activities. These activities may include board or card games, arts and crafts, or conversations about preferred topics.

**Physical education/outside play** Physical activity has been shown to decrease stereotypic behavior in individuals with ASD (Petrus et al. 2008). There is also research evidence supporting the assertion that for this population, exercise can help increase on-task behavior during subsequent academic instruction (Mahar et al. 2006). In addition, having students with ASD participate in small-group or team games provides opportunities to facilitate communicative and social interactions. During

or team games provides opportunities to facilitate communicative and social interactions. During outside play, students may participate in activities such as kickball, tag, or relay races (Miltenberger and Charlop 2014).

**Closing circle** Closing circle is a good time to practice communication skills and attending in a large-group setting. Closing circle activities may include reviewing the day’s activities, asking students to share their favorite part of the day, or having students share a favorite item from home with the rest of the group.

**Token systems** Tokens can be used to reinforce correct responding and appropriate behavior throughout the day (Tarbox et al. 2006). Using objects of obsession (e.g., a favorite TV character) as the tokens may be especially effective (Carnett et al. 2014; Charlop-Christy and Haymes 1998). At the end of the day, students should be given the opportunity to spend any tokens they have earned on preferred items. If students choose, they should be allowed to save their tokens until they have

on preferred items. If students choose, they should be allowed to save their tokens until they have earned enough for a bigger item.

**Future Directions** Over the past several decades, there have been tremendous gains in the education of students with ASD (Parsons et al. 2011; Yell et al. 2009). However, the education of children with ASD is far from perfect. While IDEA guarantees children with ASD and other disabilities an appropriate education, its implementation is often less than ideal (Block and Block 2007; Pennington et al. 2014). Schools report that they lack the funds and resources required to meet the extensive

et al. 2014). Schools report that they lack the funds and resources required to meet the extensive and diverse needs of the increasingly large population of students with ASD and other disabilities (Block and Block 2007). In addition, some students in need of these services may not qualify for them because of the vagueness of the State Education Agencies’ definitions of ASD and the variability with how it is evaluated in different states (Pennington et al. 2014). Two ways to address these

with how it is evaluated in different states (Pennington et al. 2014). Two ways to address these issues are to provide research to develop the highest quality definition of and evaluation procedures used to assess ASD as an educational disability in schools and to continue to research effective educational practices for children with ASD. IDEA recognizes the importance of research-based practices (Steedman 2007), but the necessary body of research is yet to develop. Although many strategies

(Steedman 2007), but the necessary body of research is yet to develop. Although many strategies have been shown to be effective when working with children with ASD in tightly controlled settings, much less is known about the outcomes of these strategies when implemented at school. There is a particular need for research addressing effective educational interventions for older and more impaired students with ASD (Noland et al. 2007). Researching interventions and identifying effective practices

with ASD (Noland et al. 2007). Researching interventions and identifying effective practices will provide educational teams with information that can be used to develop efficient and effective educational programs (Morris and Mather 2008).

**See Also** ▶Individuals with Disabilities Education Act (IDEA) ▶Special Education  **Education for All Handicapped Children Act of 1975 (PL94-14 L)**  **Synonyms** PL94-142  **Definition** P.L.94-142, passed in 1975, was the public law that ensured that all children with disabilities would receive a free and appropriate education. It was the first law to mandate special education in all states. It has been reauthorized several times, most recently in 2004 as the Individuals with Disabilities

It has been reauthorized several times, most recently in 2004 as the Individuals with Disabilities Education Act (IDEA).

**See Also** ▶Individuals with Disabilities Education Act (IDEA)  **Educational Interventions**  **Definition** The role of education for all children is to provide the experiences needed to learn skills that will lead to “personal independence and social responsibility” (National Research Council [NRC], 2001, p. 40). Educational interventions provide students with the support needed to acquire the skills being taught by the educational system and should address functional skills, academic,

the skills being taught by the educational system and should address functional skills, academic, cognitive, behavioral, and social skills that directly affect the child’s ability access an education. For students with autism spectrum disorders, the interventions often address some of the core deficits in the areas of communication, social skills, and behavioral differences. The interventions should be aimed at skills that need to be acquired or that need to be performed more often to lead to

be aimed at skills that need to be acquired or that need to be performed more often to lead to successful results. For children with autism, these educational interventions must be specific and targeted to address the deficits and lead to generalization and maintenance. Educational interventions vary widely depending on the needs and age of the student, resources available, background of the team members, philosophy of the program, parental requests and beliefs, and student progress. In

team members, philosophy of the program, parental requests and beliefs, and student progress. In addition, the interventions used are based on the child’s profile which should include thorough assessments and reports detailing strengths, weaknesses, learning style, preferences, past successes, etc., and should lead to the most successful outcome. Data to monitor and assess the interventions should be reviewed a regular basis to determine effectiveness and to link progress or lack of progress

be reviewed a regular basis to determine effectiveness and to link progress or lack of progress specifically to the intervention. Prescribed interventions change over time as new research is conducted, as new theories are developed, and as new technology is designed.

**See Also** ▶Academic Supports ▶Activity-Based Instruction ▶Early Intervention ▶Education  **Educational Psychology**  **Definition** Educational psychology is the study of the relationship between learning and our physical and social environments. Educational psychologists study the psychological processes involved in learning and develop strategies for enhancing the learning process. Educational development focuses on the cognitive development, and what a teacher can do impacts the

Educational development focuses on the cognitive development, and what a teacher can do impacts the development of the child. It teaches about how children learn and how they can be taught for them to be successful. Educational psychologists “study what people think and do as they teach and learn a particular curriculum in a particular environment where education and training are intended to take place.” Two fundamental assumptions that underlie formal educational systems are that students (a)

place.” Two fundamental assumptions that underlie formal educational systems are that students (a) retain knowledge and skills they acquire in school and (b) can apply them in situations outside the classroom. Aspirations of the discipline rested on the application of the scientific methods of observation and experimentation to educational questions. Ultimately, the goal of those working in the field of educational psychology is to understand the processes and conditions under which human

the field of educational psychology is to understand the processes and conditions under which human beings, both in childhood and throughout their lifespan, learn to become mature human beings who fulfill their individual potential, live in service to their community, and exercise loving stewardship over the environment. It is likely that educational psychologists will continue to contribute to education as they learn more about the brain and how learning occurs; the development of intellect,

education as they learn more about the brain and how learning occurs; the development of intellect, affect, personality, character, and motivation; ways of assessing learning; and the creation of multifaceted learning environments. The Journal of Educational Psychology is a peer-reviewed academic journal that was established in 1910 and covers educational psychology. It

expressions in photographs of faces (Tseng et al. 2015). Results revealed reduced delta–theta phase coupling in the ASD group between central and parietal EEG sensors.

Due to the limited number of studies and variability in methodology, it is difficult to delin-eate the nature of functional connectivity during social engagement in individuals diagnosed with ASD. Thus far these studies do reveal a trend of reduced alpha band EEG connectivity both within and between hemispheres during social engagement tasks in children and adults with ASD. However, more research is needed, partic-ularly studies that use standardized social inter-action tasks such as the ADOS-2

is needed, partic-ularly studies that use standardized social inter-action tasks such as the ADOS-2 in order to better characterize the nature of functional con-nectivity in the socially engaged brains of indi-viduals with ASD.

### Future Directions Efforts to identify early biomarkers of ASD remain a key clinical goal for improvements in diagnosis. One research area that is garnering attention, but is still in its infancy, is the merging of advanced computational, data-driven tech-niques with EEG for the objective detection of ASD. There is a rapidly growing literature in the computer science field indicating that artificial learning systems can be powerful tools for detecting idiosyncrasies in the spectral patterns

learning systems can be powerful tools for detecting idiosyncrasies in the spectral patterns of EEG and can therefore be trained to accurately classify EEG records that indicate ASD from those that do not. There are recent findings that are in line with this hypothesis (e.g., Bosi et al. 2018), and data is rapidly emerging suggesting that machine learning algorithms that use EEG connectivity measures acquired during live social interaction in their feature set can achieve classi-fication

measures acquired during live social interaction in their feature set can achieve classi-fication accuracies above 90% (Jayarathna et al. 2019). However, more studies with rigorous methodology and peer review will be needed for validation. If proven to be true, however, the integration of EEG connectivity during social engagement with machine learning approaches may significantly change the diagnostic process in the foreseeable future.

### EEG Discharges  ### Effect of Visual Information on Postural Control in Adults with Autism Spectrum Disorder

### Definition Postural control is the ability to keep an upright posture of the body within the base of support. Its purpose is to provide humans with stability and to orientate their bodies to perform a variety of tasks, such as standing, walking, and reaching (Horak 2006; Massion 1994). Postural control relies on a postural control system that is dependent on many aspects of the body (Horak 2006). All aspects of the body, such as the feet size, joint movements, and sensory processing within

All aspects of the body, such as the feet size, joint movements, and sensory processing within the brain, provide relevant information to the central nervous system for the control of posture. The context of the surrounding also plays an important role in postural control. Information about the surrounding is picked up by the senses of vision, touch, and hearing and sent to the central nervous system. The central nervous system combines all of the information to make sense of the body position

The central nervous system combines all of the information to make sense of the body position in the context of the surrounding. Any change in the surround-ing can affect one’s posture. Therefore, all infor-mation must be organized accurately so that the correct motor commands can be sent out to different parts of the body. The motor commands guide the body to move in the direction of front/back or left/right to keep the body in a stable posture (Winter 1995). Postural control can be measured

or left/right to keep the body in a stable posture (Winter 1995). Postural control can be measured in several ways using standardized clinical tests or measur-ing instruments. It is mostly assessed while stand-ing because standing is known to be inherently unstable (Hwang et al. 2016). Standardized clini-cal tests are usually used to assess postural control in clinics as they can be done in a short time (Mancini and Horak 2010). The tests help clinicians identify postural control problems in

time (Mancini and Horak 2010). The tests help clinicians identify postural control problems in their patients and then use the information to guide treatments. Examples of these tests include the Peabody Developmental Motor Scales, Gross Motor Function Measure, Timed “Up and Go” test, and Berg Functional Balance Scale (Mancini and Horak 2010; Westcott et al. 1997). Instrumented measures of postural control are usually used to provide an objective assess-ment of postural control for research and

control are usually used to provide an objective assess-ment of postural control for research and sports (Mancini and Horak 2010). These instruments typically record ground reaction force exerted on the surface of the instruments when the person stands on it. The force signals are later quantified into the center of pressure measurements for further analysis. An example of these instruments includes the force platform (Mancini and Horak 2010; Paillard and Noe 2015).

### Historical Background People with autism spectrum disorder (ASD) have often been documented in research literature to have problems with postural control. A large amount of research on postural control in ASD involves children with ASD. Using comparisons of postures between children with ASD and typically developing children, those with ASD have been shown to have unusual postures (Kohen-Raz et al. 1992). Unlike typically devel-oping children, children with ASD tend to hyper-extend their

et al. 1992). Unlike typically devel-oping children, children with ASD tend to hyper-extend their backs and have low muscle tone and an unusual walking style (Paquet et al. 2016). Assessments of postural control using measuring instruments also show that children with ASD tend to have a less stable posture than typically developing children when there are changes in their surrounding (Kohen-Raz et al. 1992; Molloy et al. 2003). Overall, the research shows consistent findings of postural control

al. 1992; Molloy et al. 2003). Overall, the research shows consistent findings of postural control problems in children with ASD.

### Current Knowledge While much is known about postural control in children with ASD, there is limited research evidence with regard to adults with ASD. Understanding postural control in both children and adults with ASD is essential to identify problem areas of postural control and to appreci-ate the postural control system and its develop-ment in those with ASD across the lifetime (Minshew et al. 2004). Over the past 15 years, only a small quantity of studies involving adults with ASD has

al. 2004). Over the past 15 years, only a small quantity of studies involving adults with ASD has been added to the literature (Lim et al. 2017). Therefore, little is known if postural instability in childhood ASD is normalized by adulthood. Of the limited research about postural control in adults with ASD, there is poor consistency in the findings. Among the few studies, most of them examined if changes in visual information could affect postural control in adults with ASD. These usually

if changes in visual information could affect postural control in adults with ASD. These usually involve participants opening and closing their eyes or looking at moving scenes while standing. Under these testing conditions, some studies have found that adults with ASD show similar control of posture as typically devel-oped adults (Greffou et al. 2012; Travers et al. 2013). In contrast, other studies have reported a more unstable posture in those with ASD than that in typical adults when they

have reported a more unstable posture in those with ASD than that in typical adults when they used visual information during postural control (Doumas et al. 2016; Morris et al. 2015). Two recent studies have also found that adults with ASD responded differently from typical adults in visual environ-ments controlled by immersive virtual technology (Lim et al. 2018a, b). Adults with ASD showed a more unstable posture when they had to focus on a central target and when exposed to a busy,

a more unstable posture when they had to focus on a central target and when exposed to a busy, incoherent, and unfamiliar visual environment while standing (Lim et al. 2018a, b). In addition, adults with ASD appeared to invest a larger amount of attention in postural control than typical adults when visual information was used during postural control (Lim et al. 2018b). Although some of the studies have indicated an important influence of visual environment on pos-tural control in ASD, further

have indicated an important influence of visual environment on pos-tural control in ASD, further research is still needed to ascertain these findings.

There have been several proposed reasons for postural control problems in adults ASD. One reason concerns the aspect of sensory information organization in the central nervous system. Sensory processing problems are commonly reported in people with ASD outside of motor behavior (American Psychiatric Association 2015). Mechanisms that have been proposed to explain sensory problems in ASD include an increased excitation-to-inhibition ratio (Rubenstein and Merzenich 2003); increased endogenous

an increased excitation-to-inhibition ratio (Rubenstein and Merzenich 2003); increased endogenous noise (Simmons et al. 2009); and altered neural network connectivity (Markram and Markram 2010). Problems related to any of these mechanisms could result in a series of inaccurate information relayed within the system. Thus, this would diminish the capacity for gener-ating appropriate motor commands for postural control. Additionally, problems with an inaccurate representation of the body in space

for postural control. Additionally, problems with an inaccurate representation of the body in space as a result of any process would result in the delivery of inaccurate motor commands for postural control (Van de Cruys et al. 2014).

Problems with postural control could affect a person’s independence, and thus further understanding of postural control in adults with ASD is essential. Problems with postural control could mean that adults with ASD face difficulty completing tasks that require a stable posture, such as lifting and carrying items and overhead reaching. The ability to perform these tasks is necessary for adults who want to work and live on their own (Happe and Charlton 2012). In addition, older adults with ASD

want to work and live on their own (Happe and Charlton 2012). In addition, older adults with ASD could face more problems with postural control due to age-related body changes. A combination of body changes related to old age and pre-existing postural control problems could reduce a person’s capacity to complete tasks on their own and could increase the risk of fall in older adults with ASD (Happe and Charlton 2012). Besides the need to know more about postural control in adults with ASD,

(Happe and Charlton 2012). Besides the need to know more about postural control in adults with ASD, further understanding of postural control across people of different age groups in ASD is needed. Knowing how postural control develops with age could contribute to the advancement and development of diagnostic tools and treatments for people with ASD in all age groups.

### Future Directions There is scope for future research to expand the way postural control is assessed in adults with ASD. Postural control is influenced by different types of sensory information in the environment (Horak 2006). However, little is known about the impact of somatosensory and vestibular information on postural control in adults with ASD. An understanding of how different types of sensory information affect the control of posture would provide more insights into the postural

of sensory information affect the control of posture would provide more insights into the postural control system in adults with ASD. Future studies may also want to understand how the brain responds during a postural control task in adults with ASD. Currently, there is limited knowledge about the neural mechanisms responsible for postural control problems in ASD. Knowing how the brain responds during a postural control task could help to identify areas in the brain contributing to postural

during a postural control task could help to identify areas in the brain contributing to postural control problem in ASD.

There may be benefits to investigate the asso-ciation between postural control and the level of functional independence in adults with ASD. Functional independence is important for people who work and live on their own. However, it is unclear if and how postural control problems in adults with ASD affect their functional independence. Understanding the physical needs of adults with ASD could guide the planning of resources to help them cope with daily tasks at home and in the community.

It is also important for future research to involve people with ASD from different age groups. A comprehensive understanding of the postural control system in ASD relies on knowing how postural control is presented across all ages. This also includes people in age groups that are not commonly assessed in the research literature, such as adolescents and older adults with ASD. Findings from future studies that include people of different age groups will be useful to understand how the postural

studies that include people of different age groups will be useful to understand how the postural control system changes with age and to come up with ways to treat postural control problems in ASD.

### Effectiveness of a SCERTS Intervention  ### Definition The SCERTS (social communication, emotional regulation, and transactional support) model is an evidence-based multidisciplinary educational approach developed by a team of professionals trained in different disciplines (Prizant et al. 2003). The model focuses on addressing the core challenges faced by children with autism spec-trum disorders (ASD) and their families by enhancing competence in social communication, emotional regulation,

(ASD) and their families by enhancing competence in social communication, emotional regulation, and transactional support.

### Historical Background The SCERTS model was derived from abundant empirical research and clinical investigation into both conventional and unconventional social communication skills in ASD over two decades. Having recognized the core deficits of ASD in social interaction and emotional regulation, and the need for a comprehensive educational model that can address these impairments, a team of researchers and practitioners developed the SCERTS model. In developing this model, they made use of

and practitioners developed the SCERTS model. In developing this model, they made use of scholarly literature concerned with communication and with socioemotional devel-opment in children, as well as clinical experiences of ASD and other developmental disabilities. While SCERTS is intended to address common deficits in ASD, the model takes “into account critical individual differences across families in reference to their priorities, and their involvement in critical programmatic

across families in reference to their priorities, and their involvement in critical programmatic decision-making” (Prizant et al. 2003, p. 298). It can thus be implemented in an individualized manner and is considered family-centered.

The SCERTS model has two notable features. Firstly, the model focuses on social communica-tion and emotional regulation, which resonate with the most important priorities in helping chil-dren with ASD to develop life skills (Handleman and Harris 2006; National Research Council [NRC, USA] 2001). Building competence in areas of socioemotional and communication skills in children with ASD helps them to achieve better long-term outcomes, and this model echoes the evidence-based practice

helps them to achieve better long-term outcomes, and this model echoes the evidence-based practice recommended by researchers and practitioners working in the field of ASD and related developmental disabilities (Prizant et al. 2003). Secondly, the SCERTS model highlights the implementation of “transac-tional support” and the collective input by differ-ent social partners, which unites people surrounding the child to work together as a multidisciplinary team (O’Neill et al. 2010). Such a

surrounding the child to work together as a multidisciplinary team (O’Neill et al. 2010). Such a partnership among family, peers, teachers, and professionals facilitates the implementation of individualized service in different settings, which helps children with ASD and their families to achieve more positive outcomes. The unique emphasis on multidisciplinary teamwork also makes the model flexible enough to incorporate other practices from approaches such as the Treat-ment and Education of

enough to incorporate other practices from approaches such as the Treat-ment and Education of Autistic and Communica-tion Handicapped Children (TEACCH) (Schopler et al. 1995) and the Developmental, Individual-difference, and Relationship-based model (DIR) (Wieder and Greenspan 2005; Greenspan and Wieder 1997).

The SCERTS model provides a comprehensive framework that guides the development and implementation of different educational programs for children with ASD and for supporting fami-lies. It has been widely adopted in various inter-vention and education programs across the world (Molteni et al. 2013; Walworth 2007; Walworth et al. 2009). Researchers reported that programs based on the SCERTS model can have positive impacts not only for participating children with ASD but also for others involved,

have positive impacts not only for participating children with ASD but also for others involved, such as parents, special education teachers, and therapists (Prizant et al. 2003, 2005). Although the current research evidences vary in terms of methodology (e.g., randomized control trial, single-case experimental designs and case control, cross-sectional or longi-tudinal descriptive group research designs, etc.), they generally support the treatment impact in one or more domains focused on in the

etc.), they generally support the treatment impact in one or more domains focused on in the SCERTS model (Morgan et al. 2018; O’Neill et al. 2010; Walworth et al. 2009).

### Current Knowledge Evaluation study is a valuable tool for collecting, analyzing, and using information to answer basic questions about the effectiveness of intervention models, which helps researchers find out “what works” and “what does not work.” Limited eval-uation studies have been conducted to systemati-cally examine the effectiveness of the SCERTS model (Arick et al. 2003).

In the United Kingdom, researchers carried out a case study that investigated the impact of the SCERTS model-based intervention on four ele-mentary school students in a special education school. The results showed that, after 12 months of intervention, the participating students demon-strated significant improvement in the areas of joint attention, symbol use, mutual regulation, and self-regulation. The students also became more focused on tasks and ready to learn. Self-awareness of one’s own

The students also became more focused on tasks and ready to learn. Self-awareness of one’s own needs and the use of regulations as required were also found to be improved in the four participants. It was further revealed that apart from the impact on children, the SCERTS model facilitated the development of positive multiagency cooperation in the school and supported collaboration among different school workers. The SCERTS model served as an effective way of working with children with ASD. This

school workers. The SCERTS model served as an effective way of working with children with ASD. This encouraged educators to think about their school curriculum and altered the culture of the school and the teaching style of adults (O’Neill et al. 2010).

Another reported case study was conducted in New Zealand. This examined the efficacy of a program that integrated the SCERTS model with music therapy for a 3-year-old boy with ASD. After 1 year of intervention, the boy showed pos-itive changes in the areas of active learning, social membership, independence, cooperation, and appropriateness of behaviors (Ayson 2011). In the United States, researchers investigated the effectiveness of a SCERTS model-based parent-implemented intervention, the

investigated the effectiveness of a SCERTS model-based parent-implemented intervention, the Early Social Inter-action (ESI) Project, with 82 children diagnosed with ASD at 16–20 months (Wetherby et al. 2014). The intervention focused on teaching par-ents how to use strategies to support children’s communication in everyday activities. Based on a randomized controlled trial (RCT), the effects of individual intervention (parents were trained at home or in the community) and group interven-tion

individual intervention (parents were trained at home or in the community) and group interven-tion (parents were trained in a clinic) were exam-ined and compared in terms of participating children’s social communication skills, adaptive behaviors, and developmental level. The results demonstrate the effectiveness of both individual and group intervention, while children in the indi-vidual home coaching group showed greater improvement on the social components of communication, receptive

home coaching group showed greater improvement on the social components of communication, receptive language, and core social deficits. The researchers concluded that the SCERTS model-based parent-implemented intervention was effective, and litter professional time was needed.

More recently, researchers reported a cluster randomized trial (CRT) that examined the effects of a SCERTS model-based intervention by class-room teachers in an elementary school setting in the United States (Morgan et al. 2018). A total of 60 elementary schools with 197 students with ASD and 129 teachers were randomly assigned to either a classroom SCERTS model-based inter-vention group or a normal school-based education group with autism training modules group. Standardized assessments,

a normal school-based education group with autism training modules group. Standardized assessments, teachers’ and parents’ reports, and direct observation of student behav-iors were employed to measure the intervention effect across various domains. Baseline and end-of-treatment assessments involved measures of active engagement (e.g., emotion regulation, pro-ductivity, social connectedness, directed commu-nication, generative language production, and academic independence), adaptive behavior,

commu-nication, generative language production, and academic independence), adaptive behavior, executive functioning, and social outcomes. The results showed that the classroom SCERTS model-based intervention group had significantly better outcomes than the usual school-based edu-cation group with autism training modules group. Significantly better outcomes were found in the SCERTS group students’ social participation, adaptive communication, social skills, problem behaviors, and executive

social participation, adaptive communication, social skills, problem behaviors, and executive functioning. The effect sizes were from small to medium. These findings supported the efficacy of a classroom-based, teacher-implemented, SCERTS model-based intervention.

In contrast with the widespread use of the SCERTS model in the West, its application in China has been limited. Consequently, there has been a lack of evaluation studies on the effective-ness of the SCERTS model in helping Chinese children with ASD. A recent research project in Hong Kong launched by Heep Hong Society has contributed to filling this gap. The project involves (1) a training program on the SCERTS model for professionals and parents; (2) the imple-mentation of the SCERTS

program on the SCERTS model for professionals and parents; (2) the imple-mentation of the SCERTS model-based intervention; and (3) an evaluation study that examined the effectiveness of the SCERTS model-based intervention in training preschool children with ASD. The following paragraphs report details of the training program, the SCERTS model-based intervention, and the eval-uation findings.

The first part of the program offered training to educators from 10 special childcare centers in Hong Kong where interests in learning and apply-ing the SCERTS model had been indicated. A total of 65 professionals, including special edu-cation teachers, physiotherapists, speech thera-pists, and occupational therapists attended the training. The training program consisted of two major components. The first component was a 2-day training workshop on the SCERTS model for all special education

The first component was a 2-day training workshop on the SCERTS model for all special education teachers (N ¼ 34). The second component was a 3-day advanced training workshop on the SCERTS model for all the ther-apists (11 physiotherapists, 10 speech therapists, and 10 occupational therapists). In addition, a 2-h training workshop was provided to parents of the children in the 10 centers in order to help the parents understand the rationale of the SCERTS model, the basic ideas underlying it, and

help the parents understand the rationale of the SCERTS model, the basic ideas underlying it, and its appli-cation in the daily lives of children with ASD. After the training, all participating professionals implemented the SCERTS model-based interven-tion in their respective centers (Yu and Zhu 2018).

With regard to the implementation of the SCERTS model-based intervention, the 10 centers were randomly divided into two groups. Profes-sionals in Group 1 implemented a 10-month inter-vention with 35 h of training per week; Group 2 implemented a 5-month intervention with the same number of hours of training per week. The training in both groups included (1) the special education teachers’ daily teaching and (2) individ-ual therapy and group treatment sessions provided by therapists on a weekly

and (2) individ-ual therapy and group treatment sessions provided by therapists on a weekly basis. In each center, a special education teacher taught five to seven children, while the size of the group treatment session was four to six children. The 5-month intervention (Group 2) was implemented 5 months after the commencement of the 10-month inter-vention (Group 1) (Yu and Zhu 2018).

Two measures were taken during the interven-tion period to ensure and monitor the quality of the program’s implementation. Firstly, a 2-week coaching session on the application of the SCERTS model in the intervention practices with 6 h of observation and 2 h of case discussion each day were provided for special education teachers in the 10-month and 5-month groups, respectively. Secondly, three times during the intervention period, a total of eight trained pro-fessionals observed the

three times during the intervention period, a total of eight trained pro-fessionals observed the implementation of the SCERTS model-based intervention at each center. A quality indicator scale was used to rate the extent to which each indicator was met in the areas of program planning, implementation, mon-itoring, adjustment, and transactional support including both learning and interpersonal support. Each item was rated on a 4-point scale: 0 ¼ no or minimal evidence that this is happening; 1 ¼

Each item was rated on a 4-point scale: 0 ¼ no or minimal evidence that this is happening; 1 ¼ this is happening some of the time (less than 50%); 2 ¼ this is happening most of the time (more than 50%); and 3 ¼ this is always happening (more than 90% of the time) (Yu and Zhu 2018). These scores were used to provide feedback and suggestions to the program implementers and to help them to address any problems which had been identified. In this study, good intervention quality was observed in both

problems which had been identified. In this study, good intervention quality was observed in both groups.

At the same time, a mixed-method evaluation study was carried out (1) to examine the impact of the SCERTS model-based intervention on the participating children in different developmental areas, especially in the domains of social commu-nication and emotional regulation; (2) to investi-gate the relationship between the duration of an intervention and its effectiveness; and (3) to understand the opinions of the intervention imple-menters and the parents of participating children. The first two

opinions of the intervention imple-menters and the parents of participating children. The first two aims were addressed in the quantita-tive part of the study, based on a quasi-experimental pre- and posttest design focusing on participating children. The third aim was addressed in the qualitative part of the study focusing on the intervention implementers and the parents of participating children.

For the quantitative part, 122 children (age ¼ 53.43   9.05 months) were successfully recruited from the 10 special childcare centers with the following inclusion criterion: (1) children had a clinical diagnosis of ASD; (2) children age between 3 and 6.5; and (3) their primary care-givers gave informed consent. The children were rated by a group of trained professionals who were blind to the study using standardized assessment tools. The assessment was conducted before the implementation of

using standardized assessment tools. The assessment was conducted before the implementation of the 10-month intervention and after the completion of all intervention sessions. For the qualitative part, six focus group interviews were conducted after the interventions with 19 par-ents (three groups) and 20 professionals (another three groups) by researchers with knowledge and experiences of the SCERTS model. The interview sessions focused on what parents and profes-sionals thought about the

SCERTS model. The interview sessions focused on what parents and profes-sionals thought about the SCERTS model, the changes they observed in the children after partic-ipating in the program, and the impacts of the model on their own knowledge, skills, and atti-tude towards children with ASD.

The findings showed that children in both the 10-month SCERTS model-based intervention group and the 5-month intervention group performed significantly better in social communication and emotional behaviors than they did before the intervention. Apart from improvements in the core deficits of ASD, partic-ipating children also demonstrated significant development in other areas, such as fine motor skills, gross motor skills, visual-motor imitation, as well as improved personal self-care, as reported

gross motor skills, visual-motor imitation, as well as improved personal self-care, as reported by caregivers. It has been proposed that these additional child outcomes of the intervention may be attributed to the enhanced transactional support, which serves as another key element of the SCERTS model. The study also found that duration of intervention has little influence on the effectiveness of the SCERTS model-based intervention. The 5-month intervention had simi-lar impacts to those of the

the SCERTS model-based intervention. The 5-month intervention had simi-lar impacts to those of the 10-month intervention on the participating children’s development, suggesting that the effects of the SCERTS model-based intervention can be observed in a relatively short period of time. This may further encourage parents and professionals to continue to adopt the SCERTS model-based approach in their daily practices. These findings provide empirical support for the effectiveness of the SCERTS

their daily practices. These findings provide empirical support for the effectiveness of the SCERTS model-based intervention in improving children’s development in multiple domains, among a sample of preschool children with ASD in Hong Kong. Given the limited evidence on the effects of comprehensive treatment models on child outcomes (Odom et al. 2010), particularly in a non-Western cultural context, these findings are uniquely important.

The results of the focus group interviews reveal that both program implementers (i.e., teachers and therapists) and parents expressed positive views about the SCERTS model, both reporting signifi-cant improvements in the participating children in different developmental areas. The training and implementation of the SCERTS model also had a positive impact on their own attitudes and behaviors when working with children with ASD. Specifically, both parents and professionals considered the SCERTS

working with children with ASD. Specifically, both parents and professionals considered the SCERTS model to be a well-designed training model with clear objectives, assessment measures, intervention procedures, and evaluation tools. Based on the model, chil-dren’s individual developmental needs can be identified, and this helped different social partners to design tailor-made support for the children. Teacher participants also reported that the emo-tional regulation and transactional support

Teacher participants also reported that the emo-tional regulation and transactional support con-cepts were very useful and helped them to better understand the children’s needs. Consistent with the findings of the quantitative part, professionals and parents observed improvements in the chil-dren’s social communication skills and emotional regulation, such as improved understanding of basic emotion, and the ability to use behavioral strategies to express their feelings more fre-quently. Parents

and the ability to use behavioral strategies to express their feelings more fre-quently. Parents also reported an increased confidence in children’s expression and commu-nication. Some children became more fluent in their speech and used a clearer tone of voice in communication after implementation of the SCERTS model-based intervention.

Moreover, parents and professionals reported that the SCERTS model-based intervention pro-ject shifted the way they think about and work with children with ASD. The project encouraged them to reflect on how to better work with the children and how to meet children’s develop-mental needs. They displayed a higher sense of self-efficacy, more acceptance about children’s challenging behaviors, and adopted a more posi-tive approach to providing the necessary support to children with ASD. Educators

a more posi-tive approach to providing the necessary support to children with ASD. Educators reported that their roles changed from being highly directive to being more facilitative when they were pro-vided with the SCERTS model-based interven-tion. More choices and shared control between educators and children encouraged a better under-standing of their role in learning, improved the structure of lessons, and led to less problematic behaviors. The learning atmosphere became more relaxed with

of lessons, and led to less problematic behaviors. The learning atmosphere became more relaxed with improved teacher-child relation-ships, enabling professionals to pay more atten-tion to the promotion of children’s social communication skills and emotional regulation abilities. Overall, both educators and parents reacted positively towards the SCERTS model-based intervention. Both were guided to respond to the needs and interests of children with ASD, to modify the environment, and to use

to respond to the needs and interests of children with ASD, to modify the environment, and to use different approaches to facilitate children’s learning. At the same time, emotional and educational support provided to parents and educators further improved their self-efficacy and confidence in coping with the difficulties that they encountered and in promoting improvements in children’s key deficit areas as well as overall development. The qualitative findings verified the quantitative results and

areas as well as overall development. The qualitative findings verified the quantitative results and further demonstrated that the incorpo-ration of the SCERTS model in training children with ASD will benefit the children and the related partners around the child.

The positive findings and successful experi-ence of this research project have several practical implications. Professionals and researchers who are working with children with ASD may consider further integrating the model into their existing programs and investigating the impact of the pro-gram. Furthermore, regular training on the SCERTS model for parents of children with ASD would be beneficial. Such training empowers parents to apply the model in their daily life in order to facilitate their

Such training empowers parents to apply the model in their daily life in order to facilitate their child’s devel-opment. Finally, the model can be used to help different partners to collaborate closely with each other when working with children with ASD. These collaborative practices not only benefit the children and their families; they also have the potential to bring about positive changes in the practices of professionals and other treatment partners.

### Future Directions As a comprehensive treatment model for children with ASD, the SCERTS model has been well operationalized but has as yet yielded limited evi-dence on treatment outcomes (Lin et al. 2016; Odom et al. 2010). While the extant studies have provided preliminary empirical evidence for the effectiveness of the model, there remains a pressing need to systematically examine the implementation and impact of other types of SCERTS model-based intervention with rigor-ously designed

and impact of other types of SCERTS model-based intervention with rigor-ously designed research. Important future research directions might include performing ran-domized control trials (RCTs) to examine how the SCERTS model-based intervention program could contribute to positive changes in children with ASD in different age groups (such as preschool, school-aged, adolescents), after excluding the effects of maturation. RCTs also need to be undertaken for the purpose of further investigating

the effects of maturation. RCTs also need to be undertaken for the purpose of further investigating the relationship between the dura-tion of intervention and its effectiveness. Additional research is needed to complement existing findings and to examine the effect of the SCERTS model-based intervention on the basis of a more representative sample of children with ASD. The long-term effects of the SCERTS model-based intervention furthermore will be followed up in longitudinal studies. Last, but

SCERTS model-based intervention furthermore will be followed up in longitudinal studies. Last, but not least, parents play an important role in enhancing the effectiveness of the SCERTS model-based intervention program, and future study should also examine the mediation effect of parental practices on children’s outcomes.

In sum, intervention based on the SCERTS model recognizes the broader context of a child’s development. It has a positive impact not only on children with ASD but also on their parents, teachers, and therapists. The SCERTS model pro-vides a useful framework of intervention that can be potentially applied in a variety of educational and treatment settings to help children with ASD.
 ### Effectiveness of Parent-Child Interaction Therapy for Children With and Without Autism Spectrum Disorder

### Definition Research and clinical experience suggest that a significant number of young children with autism spectrum disorder (ASD) present with coexisting clinically significant behavior problems. Children with ASD are often severely impacted in the areas of socialization, communication, repetitive behaviors, and restricted interests. The impairment in communication and socialization may increase the risk for problem behaviors, mak-ing children with ASD more likely to display problem

increase the risk for problem behaviors, mak-ing children with ASD more likely to display problem behaviors that warrant treatment. For children with ASD, an important social context for the development of both maladaptive, problem behaviors and adaptive, pro-social behaviors is the parent-child relationship, including parent-child interactions. Interventions that train parents to modify their interaction patterns often lead to positive behavioral changes in children with and without

their interaction patterns often lead to positive behavioral changes in children with and without developmental disabilities. One interven-tion that has demonstrated effectiveness in typi-cally developing young children and has a significantly growing research base for children with ASD for improving parent-child relation-ships, reducing problem behavior, and increasing child compliance is Parent-Child Interaction Therapy (PCIT). PCIT has been established as an effective, evidenced-based

Parent-Child Interaction Therapy (PCIT). PCIT has been established as an effective, evidenced-based treatment for typi-cally developing young children ages 2–7 with behavioral difficulties through highly specified, step-by-step, lived-coached sessions with both the caregiver and the child. Parent acquisition of skills taught in PCIT is gauged through the Dyadic Parent-Child Interaction Coding System (DPICS), and child behavior is typically assessed through parent report using the Eyberg Child

(DPICS), and child behavior is typically assessed through parent report using the Eyberg Child Behavior Inventory (ECBI).

### Historical Background Behavioral Parent Training (BPT) programs are the most used and well-established treatments for children with externalizing problem behaviors. BPT programs train parents how to alter their child’s behavior at home through behavior ana-lytic techniques and principles. BPT programs have been shown to help alleviate symptoms of many disruptive behavior disorders and have additionally been shown to alleviate aggression and increase compliance in typically developing

additionally been shown to alleviate aggression and increase compliance in typically developing children. PCIT is one specific BPT program and is based on principles from attachment theory and social learning to promote an authoritative parent-ing style. Attachment theory informs the focus on a warm and responsive parent-child relationship in order to develop a secure parent-child relation-ship. Social learning theory informs the behav-ioral techniques implemented within PCIT focused on

Social learning theory informs the behav-ioral techniques implemented within PCIT focused on consistent contingencies to alter dys-functional interactions and patterns within the parent-child relationship. Theoretically, PCIT focuses initially on relationship enhancement (attachment) first as a necessary foundation for a later focus on effective limit setting, contingen-cies, and consistency in discipline. In PCIT par-ents learn to attend to positive behavior, ignore inappropriate behavior, and

In PCIT par-ents learn to attend to positive behavior, ignore inappropriate behavior, and implement time-out for noncompliance and aggression.

Several treatment approaches have been used to improve the behavior, language, and social skills of children with autism, each with varied levels of empirical support. The more common and empirically supported include interventions based on applied behavior analysis, incidental teaching, errorless compliance training, and par-ent training (McDiarmid and Bagner 2005). PCIT incorporates a number of techniques that are traditionally seen in therapies addressing behavioral difficulties in children

techniques that are traditionally seen in therapies addressing behavioral difficulties in children with ASD. Similar to Floortime and TEACCH, PCIT places a high degree of importance on consistent and high-quality parent-child interactions (Masse et al. 2007; Petrenko 2013). PCIT also shares similarities with pivotal response training in its emphasis of using familiar play objects, conducting training in an environment similar to the home, and a focus on generalization of skills (Masse et al.

in an environment similar to the home, and a focus on generalization of skills (Masse et al. 2007). A common theme inherent within many interventions for children with ASD and what is often thought of as best practices for treatment of ASD (Smith and Iadarola 2015) is to take a comprehensive approach by allowing parents to play an integral part in therapy. By increasing parental involve-ment, skills learned within a clinic are then gen-eralized to other settings such as the home and public

skills learned within a clinic are then gen-eralized to other settings such as the home and public environments. PCIT views the parent as the agent of change in a child’s life. PCIT not only stresses the importance of relationship building through enriching and rewarding parent-child interactions but also contains an intensive compliance training component similar to the ABA discrete trial training.

The PCIT therapy protocol is structured in two phases, with the first focused on relationship enhancement (Child-Directed Interaction; CDI) and the second focused on parental consistency and discipline (Parent-Directed Interaction; PDI). Following a didactic parent-only session, parents are live-coached in the relationship building skills of Praise, Reflection, Imitation, Description, and Enjoyment (PRIDE). Coaching is continued until the parent reaches a specific level of mastery criteria in the

(PRIDE). Coaching is continued until the parent reaches a specific level of mastery criteria in the observed skill use. Upon mastery of CDI skills, the therapist engages the caregiver in a didactic PDI teaching session followed by several PDI coaching sessions focused on the provision of effective commands, appropriate responses for child noncompliance, and strategies to increase compliance. PCIT employs a struc-tured time-out technique as the primary discipline strategy. The taught time-out

employs a struc-tured time-out technique as the primary discipline strategy. The taught time-out procedures can be individualized to the child and serve the purpose of eliminating a child’s ability to escape a com-mand before progressing with the parent-child interactions. The compliance training begins with the use of simple “play” commands prior to moving to more real-life instructions. Throughout PCIT parents review their progress on specific behaviors that are coded and graphed, are assigned

PCIT parents review their progress on specific behaviors that are coded and graphed, are assigned homework activities, and are provided opportunities for independent problem-solving. Following therapy there is a graduation session where any additional resources are provided, and both the caregiver and the child receive certifi-cates of completion.

### Current Knowledge PCIT is a widely recognized evidenced-based intervention for the reduction of child externaliz-ing behaviors of typically developing children with over 25 years of research. Multiple meta-analyses of the effectiveness of PCIT for typically developing children support decreases in parental stress (Cooley et al. 2014) and in reduction in child behavior problem intensity (Cooley et al. 2014; Ward et al. 2016). Thomas et al. (2017) provided an updated comprehensive

(Cooley et al. 2014; Ward et al. 2016). Thomas et al. (2017) provided an updated comprehensive meta-analysis including both typically developing and a variety of clinical populations such as children with mild to moderate intellectual impairment and developmental disabilities, preterm children, fos-ter children, children with ADHD, children in Head Start families, and children who have expe-rienced or are at risk for experiencing maltreat-ment. Findings suggest that PCIT is an effective means

or are at risk for experiencing maltreat-ment. Findings suggest that PCIT is an effective means of reducing parenting stress and child prob-lem behavior across a variety of child populations (Thomas et al. 2017).

Several single-subject design and small sample studies have examined the effectiveness of PCIT for children with ASD. All have reported a reduc-tion in child problem behavior and an increase in positive parenting skills. Beyond child problem behavior and positive parenting skills, PCIT in the ASD population has been found to reduce mater-nal psychopathology (i.e., stress, depression, and anxiety), to increase child vocalization frequency, to decrease some ASD-related symptomology (e.g.,

to increase child vocalization frequency, to decrease some ASD-related symptomology (e.g., atypicality and withdrawal), and to increase some ASD-related deficits (e.g., functional com-munication). Larger sample studies have decreases in child problem behavior with the ECBI and increases in positive parenting skills following PCIT for children with ASD (Furukawa et al. 2018; Parladé et al. 2019; Ros and Graziano 2019; Zlomke and Jeter 2019; Zlomke et al. 2017).

### Future Directions Although empirical evidence now supports the use of PCIT for children with ASD and coexisting disruptive behavior, several questions remain unanswered. Each study varies in their inclusion criteria, and by definition ASD is a heterogeneous diagnostic label. Therefore, future research should identify appropriateness of children with ASD for PCIT. It may be that certain language parameters, presence of self-injury, or other child characteris-tics may preclude the successful

parameters, presence of self-injury, or other child characteris-tics may preclude the successful participation in PCIT. Clinician tailoring of PCIT to a presenting parent-child dyad is standard practice. Given the unique presenting problems and symptoms pre-sent in children with ASD, variations in implementation strategies, treatment targets, and techniques should be investigated. A proposed addition of a social-directed interaction (SDI) phase to the PCIT protocol would focus on com-munication

of a social-directed interaction (SDI) phase to the PCIT protocol would focus on com-munication abilities and social skills. A communication-focused SDI would incorporate command training and “when/then” statements. Communication targets could also include eye contact and greetings like “hello” and “good-bye.” PCIT with children with well-developed verbal abilities would possibly social skills targets (e.g., how to ask a question or get someone’s attention). In addition to the SDI phase, it has

(e.g., how to ask a question or get someone’s attention). In addition to the SDI phase, it has been recommended to add a time-out readiness phase after CDI and before PDI. The time-out readiness phase would allow for the specific teaching and practicing of compliance prior to the implementation of time-out. This phase would allow the child to gain access to expecta-tions prior to time-out and allows the caregivers to practice their PDI skills prior to the implementa-tion of time-out. During this

the caregivers to practice their PDI skills prior to the implementa-tion of time-out. During this time-out readiness phase, caregivers would also be taught physical prompting to achieve compliance without the use of time-out while they practice their skills, and the child experiences the compliance contingencies prior to experiencing time-out. Although these two suggested phases (social-directed interaction phase and time-out readiness phase) are currently untested, they may increase PCIT

interaction phase and time-out readiness phase) are currently untested, they may increase PCIT effectiveness and remain in the spirit of the theoretically based protocol.

### Effects of Social Stimuli on Postural Responses  ### Definition of Autism Disorders and Postural Control Autism spectrum disorders (ASD) refer to a range of conditions that are characterized by pervasive problems in social interactions and atypical motor behaviors (American Psychiatric Association 2013). Children with ASD usually have sensory deficits affecting fine and gross motor behaviors (Fournieret al. 2010). One of the key element governed by sensory motor processes is keeping the

(Fournieret al. 2010). One of the key element governed by sensory motor processes is keeping the posture upright (Doumas et al. 2016; Kohen-Raz et al. 1992). Successful postural control requires integration of vestibular, somatosensory, and visual input (Doumas et al. 2016). Abnormal postures such as toe walking, hyperextension of the neck, or arching the back have been reported among children with ASD (Kohen-Raz et al. 1992). These atypical postural behaviors play a detrimental role in daily

ASD (Kohen-Raz et al. 1992). These atypical postural behaviors play a detrimental role in daily life and negatively affect independence of children on the spectrum. This can further exacerbate core symptoms of ASD by restricting social interactions and limiting opportunities to acquire perceptual-motor skills (Memari, et al. 2014; Travers et al. 2013). Keeping posture upright is a fundamental skill, which has been the focus of attention in motor research. Postural control is the ability to

skill, which has been the focus of attention in motor research. Postural control is the ability to maintain center of mass (COM) in the base of support (Memari et al. 2013). Position of the exerted ground reaction forces to confront body weight is considered as center of pressure (COP) (Shumway-Cook and Woollacott 2001). COP as the well-known index of postural control is an indicative of neuromuscular reactions to the motion of body mass which retains the stability. Previous studies have shown

reactions to the motion of body mass which retains the stability. Previous studies have shown that as children grow up, they gain more skills in keeping posture upright and as a result postural sway decreases (Hytönen et al. 1993). This might be considered in clinical diagnosis to portray a cardinal feature of postural control immaturity for children with neurodevelopmental disorders.

### Historical Background of Postural Control It has been shown that children with ASD exhibit higher postural sway and show atypical patterns compared with their typically developing (TD) peers (Memari et al. 2013; Minshew et al. 2004). Contrary to TD children, those with ASD have higher instability in medio-lateral direction than antero-posterior direction, suggesting pos-tural immaturity, or an asynchrony between mus-cle stabilizers, or an alternative mechanism for generating postural

or an asynchrony between mus-cle stabilizers, or an alternative mechanism for generating postural control (Fournier et al. 2010; Memari et al. 2013). Postural instability among children with ASD was more pronounced when the somatosensory input either vestibular or visual or both were disrupted (Goulème et al. 2017; Minshew et al. 2004). Increase in sensory infor-mation demand or task difficulty will result in more postural sway in both groups of ASD and TD. However, because children with ASD

will result in more postural sway in both groups of ASD and TD. However, because children with ASD have problems in multimodal sensory integration, the difference is significantly accentuated in children with ASD (Doumas et al. 2016; Minshew et al. 2004; Stins et al. 2015).

Because in real-life situations postural control is usually accompanied by a cognitive secondary task such as an audio or visual task, investigating the dual task paradigm can help to uncover mech-anisms of postural control. It has been shown that children with developmental disorders, Tourette syndrome, or ASD will show more postural sway in dual task conditions (Laufer et al. 2008; Lemay et al. 2010; Memari et al. 2014); however, find-ings in the TD population are mixed (Pellecchia 2003;

al. 2010; Memari et al. 2014); however, find-ings in the TD population are mixed (Pellecchia 2003; Riley et al.2005). This might be due to the difficulty of the task and cognitive load which is involved. When two tasks are involved, they will compete to allocate more attentional resources within the limited attentional capacity. Therefore, children with developmental disorders such as ASD with restricted attentional resources show higher postural sway when the attention is divided during a

restricted attentional resources show higher postural sway when the attention is divided during a concurrent task (Memari et al. 2014; Pellecchia 2003).

Considering different types of tasks, children with ASD exhibit higher postural sway in inspec-tion task than visual searching task (Chang et al. 2010). They also showed higher postural instability in visual searching than audio digit span task (Memari et al. 2014). This might be an indicative of higher visual reliance among children with ASD to maintain balance (Molloy et al. 2003; Stins et al. 2015). Thus, executing simultaneous visual tasks or any manipulation on visual input during

et al. 2015). Thus, executing simultaneous visual tasks or any manipulation on visual input during postural control will decrease visual attentional resources dedicated to postural control. This will lead to higher postural sway among children with ASD to a greater extent than among their TD peers.

### Current Knowledge on Postural Control and Social Cues Recently, uncovering effects of social stimuli on postural control has been an upsurge of interest. It seems that there is an interconnection between motor control system and affective system. Previ-ous studies have shown that social cues can alter arousal level and affect postural control (Gea et al. 2014; Ghanouni et al. 2017; Hillman et al. 2004; Stins and Beek 2007). For example, TD children showed larger postural sway when viewing

al. 2004; Stins and Beek 2007). For example, TD children showed larger postural sway when viewing happy and sad faces compared with angry or neutral ones (Goulème et al. 2017). Also, viewing unpleasant pictures can decelerate hart rate, decrease postural sway, and induce muscle stiffness (Azevedo et al. 2005; Roelofs et al. 2010; Stins and Beek 2007). These physiological responses resemble the freezing-like maneuvers seen in threatening situ-ations. Coarse and fast processing of threatful

freezing-like maneuvers seen in threatening situ-ations. Coarse and fast processing of threatful stimuli is rooted in survival and evolution. There-fore, increased backward postural sway as opposed to forward sway when viewing unpleas-ant pictures will show approach-avoidance motor responses to affective stimuli (Gea et al. 2014; Lopes et al. 2009). However, the extents of this connection among individuals with developmen-tal disorders such as ASD are yet to be explored.

Previous study has shown that children with ASD, compared with their TD peers, exhibit higher postural sway when viewing social stimuli such as faces versus objects (Ghanouni et al. 2017). Authors also found that the extent of pos-tural sway is moderated by the severity of the autistic disorder. This is an interesting finding as children with ASD have problems in perceiving social stimuli and may experience higher arousal and anxiety in social contexts (Dalton et al. 2005). This might be the

experience higher arousal and anxiety in social contexts (Dalton et al. 2005). This might be the reason that children with ASD usually avert their gaze from facial stimuli. When children with ASD view social versus object stim-uli, induced higher anxiety and arousal will lead to higher postural sway (Ghanouni et al. 2017; Horslen and Carpenter 2011).

According to the weak central coherence the-ory, individuals with ASD have a tendency and bias towards attending to details rather that looking at the picture as a whole (Happé 2013). Facial stimuli require configural or global pro-cessing, a task which children with ASD have problems in doing it (Behrmann et al. 2006). Therefore, it can be assumed that the high-cognitive task of facial processing will recruit more attentional resources among children with ASD compared with their TD

processing will recruit more attentional resources among children with ASD compared with their TD counterparts. Due to the limited attentional capacity, the residual attentional resources will contribute to the pos-tural control, which in return accentuates the pos-tural instability observed among children with ASD (Karatekin 2004; Pellecchia 2003). How-ever, further investigations on the underlying mechanisms of postural control among population with ASD are warranted. This might be a

underlying mechanisms of postural control among population with ASD are warranted. This might be a potential avenue for preparing a new diagnosis tool or a model to detect early signs of developmental dis-orders such as ASD.

### Future Directions Comparing mechanisms of development and impairments in postural control among individ-uals with and without ASD would help to distinguish patterns of maturation, compensa-tion, and abnormality. Currently, there is little information on how postural control is maintained or affected among populations with ASD. Using various environmental perturba-tions, cognitive tasks, and difficulty levels would be helpful to uncover mechanisms involved in the postural control among

and difficulty levels would be helpful to uncover mechanisms involved in the postural control among individ-uals with ASD. Difficulties in postural control among populations with ASD may be associated with the presence of other comorbid conditions such as attention deficit hyperactivity disorders. However, there is a dearth of literature on how comorbidity, age, intellectual functioning, gen-der, and autistic traits will modulate postural responses in various contexts. Future studies should

and autistic traits will modulate postural responses in various contexts. Future studies should consider evaluation of postural control in conjunction with psychological responses such as pupillary dilation, eye gaze, heart rate, and electromyography of muscles among populations with ASD to portray more robust pictures of these phenomena.

### Efficacy of Group-Based Organized Physical Activity Participation for Children with Autism Spectrum Disorder

### Synonyms Group-based organized sport  ### Definition Physical activity is well recognized as movements produced by the body’s skeletal and muscular system that require the expenditure of energy (World Health Organisation 2019). One subset of physical activity is group-based organized physical activity (OPA). This has been defined as physical activities typically involving formal and structured training sessions that are supervised by an adult coach (Okely 1999). This idea that OPAs are

training sessions that are supervised by an adult coach (Okely 1999). This idea that OPAs are structured and planned in nature is consistent across Australian, UK, and US definitions. The group-based aspect of this term also requires activities to involve two or more individuals (aside from the coach) engaging in the activity at once. These programs can include competitive team sports such as soccer or football and basket-ball or non-competitive programs such as group horse-riding and karate.

or football and basket-ball or non-competitive programs such as group horse-riding and karate. Australian definitions also incorporate the idea that such activities are required to be organized by sporting bodies or recreational associations, for example, clubs and community associations (see Howells et al. 2019). Importantly, group-based OPA and physical activity are not synonymous terms. Aside from increasing physical activity, group-based OPA and organized sports have been associated with

from increasing physical activity, group-based OPA and organized sports have been associated with added psychosocial benefits (Vella et al. 2016) above what an individual physical activity pro-gram such as walking can provide. This is partic-ularly important for children with neurodevelopmental disorders such as autism spectrum disorder (ASD), where the salient fea-tures lie in social and communicative difficulties and individuals are at a heightened risk of psychi-atric conditions such as

difficulties and individuals are at a heightened risk of psychi-atric conditions such as clinically significant anx-iety. The benefit to psychosocial domains following OPA, which is a movement-based activity, is unsurprising, not only because of the opportunity for social interaction with peers dur-ing the program but also because of the integration of neural circuitry between various developmental brain regions (e.g., frontal regions and the cere-bellum). Hence, programs that develop motor skills

regions (e.g., frontal regions and the cere-bellum). Hence, programs that develop motor skills also have the potential to benefit broader developmental areas such as social, cognitive, and behavioral functioning in children with ASD. Despite potential benefits, Canadian research shows children with neurodevelopmental conditions more generally often spend less time engaged in OPA, in comparison with TD children (Arim et al. 2012). Given this, it is imperative that children with ASD are provided

TD children (Arim et al. 2012). Given this, it is imperative that children with ASD are provided with the same opportunities to participate in group-based OPA programs as their neurotypical peers, and research continues to explore factors which could hinder or facilitate participation in OPA in this group, alongside the potential benefits to participation. An increase in research may aid in the journey that sees these types of programs run in conjunction with current clinical interventions for

that sees these types of programs run in conjunction with current clinical interventions for children with ASD. Moreover, while the potential benefits associated with physical activity more generally are broad ranging, participation in group-based OPA programs also provide children with ASD an opportunity to engage with peers and integrate into community activities. This may benefit not only the individual child but also their families, providing a sense of normalcy, and aid in attitudi-nal

individual child but also their families, providing a sense of normalcy, and aid in attitudi-nal shifts at the community level.

### Efficacy of Peer Network Interventions  ### Definition Peer network interventions are a type of peer-mediated instruction/intervention in which peers are selected to form a network around a student with disabilities, and regularly sched-uled opportunities for the network to interact are provided during noninstructional times (e.g., lunch, between classes, before school) with ongo-ing support from an adult facilitator (Carter et al. 2013). Social outcomes are the primary goals of peer

from an adult facilitator (Carter et al. 2013). Social outcomes are the primary goals of peer network interventions, including increas-ing opportunities for students to meet new people, supporting friendship development, and encouraging students to engage in social activities during and outside of school (Carter et al. 2013, 2014). To date, peer network interventions have been implemented primarily with students with autism spectrum disorder (ASD) in an effort to address social and

primarily with students with autism spectrum disorder (ASD) in an effort to address social and communication challenges. Two to six peers (i.e., peer partners) are selected to join the student with ASD, and together, they create the peer network. The desirable traits of a peer partner include a positive peer model (e.g., demonstrates age-appropriate social skills) who is excited and expresses an interest in developing a relationship with the stu-dent with ASD (Carter et al. 2014). Peer partners

in developing a relationship with the stu-dent with ASD (Carter et al. 2014). Peer partners should also express interest in staying involved throughout the duration of the intervention. Facilitators can be any adult who has a positive relationship with the student with ASD including but not limited to, a general or special educator, paraprofessional, special area educator (e.g., physical education), speech-language pathologist, counselor, or extracurricular teacher/coach. The components of peer

speech-language pathologist, counselor, or extracurricular teacher/coach. The components of peer network interventions are flexible (Carter et al. 2019) but typically include the following core components: (a) orienting the students to the network, (b) scheduling regular opportunities for students to interact, and (c) providing adult facilitation (Carter et al. 2013). Before weekly scheduled meetings begin, an orientation is held where the peer partners and student with ASD meet, get to know one

begin, an orientation is held where the peer partners and student with ASD meet, get to know one another, share schedules, identify areas of common interest, and learn about peer network goals and how the peer network works (e.g., Sreckovic et al. 2017). During weekly meetings, the facilitator checks in with students to identify if they are interacting outside of weekly meetings (e.g., walking to class together) and encourages students to connect outside of meetings (Carter et al. 2013). The

to class together) and encourages students to connect outside of meetings (Carter et al. 2013). The majority of the meeting is centered on a shared activity selected by the students, such as playing a game. The facilitator guides the meeting at the beginning of the intervention but slowly allows the students to take ownership over the meetings while still providing guidance when needed. For example, the facilitator may model how to engage the student with ASD in the activity or model how to use

the facilitator may model how to engage the student with ASD in the activity or model how to use aided augmentative and alternative communication (AAC).

### Historical Background Individuals with ASD by definition have difficulty with social interaction and communication (APA 2013). These challenges, combined with segregated service delivery, close proximity of paraprofessionals and/or special educators, and peer attitudes and lack of understanding of ASD, make developing and maintaining positive peer relationships difficult (Carter 2018). Indeed, research consistently documents limited and low-quality peer relationships among students with ASD

research consistently documents limited and low-quality peer relationships among students with ASD and their peers (Petrina et al. 2014), even though students with ASD have expressed interest in developing friendships with peers (Daniel and Billingsley 2010). This is concerning considering positive peer relationships make important contributions to success in school and overall quality of life (Rubin et al. 2009). On the contrary, peer rejection can lead to internalizing and externalizing

(Rubin et al. 2009). On the contrary, peer rejection can lead to internalizing and externalizing behavioral problems (Ladd 2006) and a myriad of psychological problems including loneliness (Buhs and Ladd 2001).

Examining the efficacy of social interventions to improve social deficits of individuals with ASD has been a long-standing focus in intervention research (White et al. 2017). While interventions to teach concrete social skills (e.g., social skills training) and communication skills (e.g., picture exchange communication) have been well established in the literature (Wong et al. 2015), less is known about the efficacy of generalizing those skills to natural environments, as well as how to create

about the efficacy of generalizing those skills to natural environments, as well as how to create opportunities for individuals with ASD to develop positive peer relationships. Increased social skills do not necessarily equate to friendship development and greater social involvement in the school culture. In fact, in a nationally representative longitudinal study of the involvement of adolescent students with disabilities, students with ASD were reported as the least likely to receive telephone

with disabilities, students with ASD were reported as the least likely to receive telephone calls from friends, frequently see friends outside of school, and get invited to another student’s social event (Wagner et al. 2004). Further, only 30% of the students with ASD participated in an organized group activity at school within the previous year (Wagner et al. 2004). Therefore, students with ASD may not fully participate in or benefit as much as they could be from the social aspects of school,

may not fully participate in or benefit as much as they could be from the social aspects of school, such as establishing friendships and participating in group activities.

Given the low quality and quantity of recipro-cal friendships and high bullying victimization rates among youth with ASD, identifying inter-ventions that support increased social interaction and the development of positive peer relationships are now at the forefront of research (Winchell et al. 2018). Peer-mediated instruction/interven-tions naturally increase physical proximity between students with ASD and their peers as teachers systemically teach peers strategies for interacting with

with ASD and their peers as teachers systemically teach peers strategies for interacting with and/or helping students with ASD learn new skills (Wong et al. 2015). While peer-mediated instruction/interventions have been identified as an evidence-based practice with empirical evidence supporting social (birth to age 22) and academic (age 6–22) outcomes of youth and young adults with ASD (Wong et al. 2015), less is known about the efficacy of specific forms of peer-mediated

with ASD (Wong et al. 2015), less is known about the efficacy of specific forms of peer-mediated instruction/interventions, such as peer network interventions.

### Current Knowledge Peer network interventions have been implemented in elementary (e.g., Kamps et al. 2014;), middle (e.g., Haring and Breen 1992; Koegel et al. 2012), and high (e.g., Gardner et al. 2014) school settings as a stand-alone interven-tion (e.g., Sreckovic et al. 2017) and as part of a multicomponent packaged intervention (e.g., direct instruction, scripted practice, peer-mediated free play, review of performance, and reinforce-ment; Kamps et al. 2014). The efficacy of peer

free play, review of performance, and reinforce-ment; Kamps et al. 2014). The efficacy of peer network interventions has been examined using single case (e.g., Hochman et al. 2015), randomized controlled trial (e.g., Asmus et al. 2017), and quasi-experimental (Schmidt et al. 2017) research designs. Across K-12 settings, peer network interven-tions have been efficacious at improving social outcomes for students with ASD with varying support needs, including students with complex communication

for students with ASD with varying support needs, including students with complex communication needs (Biggs et al. 2018), students with significant support needs (Asmus et al. 2017), and students with ASD without comorbid ID (Sreckovic et al. 2017). Research indicates they have been implemented with high school students with ASD with diverse characteristics (e.g., autism symptomology, adaptive behavior, IQ scores) and education pathways (i.e., standard diploma, alternative diploma; Carter et

behavior, IQ scores) and education pathways (i.e., standard diploma, alternative diploma; Carter et al. 2019). Educators have implemented peer network interventions with fidelity and rated the interventions favorably, identifying them as feasible to implement, useful, and effective for their students with ASD and ID (Carter et al. 2019).

Across studies available in the literature, the components of peer network interventions main-tain relatively consistent with core components including orienting students (e.g., preparing peer partners to effectively communicate with focal students), regularly scheduling opportunities for students to engage in a shared activity, and incorporating adult facilitation. Yet, intervention procedures have been implemented flexibly to meet the needs of students and facilitators. The frequency of

have been implemented flexibly to meet the needs of students and facilitators. The frequency of network meetings and length of intervention have also differed across studies. For example, participants in the study conducted by Asmus et al. (2017) met approximately once per week at least six times throughout the semester (Asmus et al. 2017), and participants in a study conducted by Sreckovic et al. (2017) met twice per week for 4 weeks. The efficacy of peer network interventions has been

et al. (2017) met twice per week for 4 weeks. The efficacy of peer network interventions has been investigated with several outcome variables, all under the social/communication domain. These outcome variables include initiations and responses to/from peers/focal student (Haring and Breen 1992; Kamps et al. 1997, 2014, 2015; Koegel et al. 2012, 2013; Sreckovic et al. 2017), duration of social interaction among students (Garrison-Harrell et al. 1997; Kamps et al. 1997; Koegel et al. 2012, 2013),

among students (Garrison-Harrell et al. 1997; Kamps et al. 1997; Koegel et al. 2012, 2013), communicative acts toward peers (Mason et al. 2014), appropriate social responding, extended social interactions (Haring and Breen 1992), social interactions, social engagement, social-related goal, adult facilitative strategies (Gardner et al. 2014; Hochman et al. 2015), support behaviors from peer partners (Gardner et al. 2014), interaction quality (Haring and Breen 1992; Gardner et al. 2014), social

(Gardner et al. 2014), interaction quality (Haring and Breen 1992; Gardner et al. 2014), social contacts, friendship gains, social skills, school activity involvement (Asmus et al. 2017), prox-imity to peer partners, peers, adults (Biggs et al. 2018; Gardner et al. 2014; Hochman et al. 2015) and proximity to AAC device (Biggs et al. 2018), use of augmentative communication system (Garrison-Harrell et al. 1997), total number of words spoken, number of different word roots, length of

et al. 1997), total number of words spoken, number of different word roots, length of conversational turn in reciprocal conver-sation, ratio of different words to total words (Schmidt et al. 2017), interactions with peers (symbolic and nonsymbolic) and nonprompted, symbolic communicative acts (Biggs et al. 2018), and bullying victimization (Sreckovic et al. 2017).

In a seminal peer network study, Haring and Breen (1992) investigated the efficacy of peer network interventions implemented with two junior high students (one student with ASD and one student with ID and language delay). During the intervention, each focal student was grouped with four to five typically developing peers to form a network. Peer partners walked with the focal students in between classes, ate lunch with the focal students, and once a week the facilitator and network met to talk

classes, ate lunch with the focal students, and once a week the facilitator and network met to talk about times to interact, assess the group’s satisfaction, and casually inter-act. Using a multiple baseline across participants design, the researchers measured social interac-tions, appropriate social responding, and extended social interactions. During intervention, the frequency of appropriate social interactions increased between the focal students and their peers. Further, both focal

social interactions increased between the focal students and their peers. Further, both focal students participated in non-prompted events outside of school with their peer networks. One focal student’s mother noted her son had been invited to an event outside of school by a peer for the first time. After the intervention, 89% of the peer partners rated focal students as a friend, and 11% rated focal students as a best friend. Subsequent work has replicated this study with the addition of

focal students as a best friend. Subsequent work has replicated this study with the addition of treatment fidelity and demonstration of experi-mental control. Illustrations of studies across the K-12 continuum are included below.

### Supporting evidence in elementary settings. Several studies have examined the impact of peer network interventions on the social outcomes of young children with ASD. Kamps et al. (2015) investigated the impact of peer network interventions implemented with 95 kindergarten and first grade students with ASD. Four to six peers were selected from each focal student’s class or a class within one grade level to serve as peer partners. The peers rotated throughout the week; two peer partners

one grade level to serve as peer partners. The peers rotated throughout the week; two peer partners participated per meeting. The intervention consisted of direct instruction on a social skill (e.g., sharing and requesting), child-adult practice, peer-mediated free play (10–15 min of play with toys and games), and review of performance and reinforcement. The researchers employed a block randomization procedure by class to examine the impact of the intervention on total communication acts (i.e.,

procedure by class to examine the impact of the intervention on total communication acts (i.e., initiations and responses) to peers, language performance, adaptive communication, and teacher impressions of children’s social communication. Children in the comparison group received instruction as indicated in their IEP and were not receiving structured peer-mediated social skill instruction. When compared to the control group, the implementation of the intervention resulted in statistically

compared to the control group, the implementation of the intervention resulted in statistically significant growth over time for initiations to peers during nontreatment social probes and generalization. Children with ASD were more likely to engage in more communicative acts the longer they were in the peer network intervention. At the end of first grade, no statically significant differences were found for initiations or responses across groups. Language performance and adaptive communication

found for initiations or responses across groups. Language performance and adaptive communication skills improved for all students over time, but those in the peer network group tended to see greater gains compared to the con-trol group. Teacher’s impressions of children’s social communication also improved as a result of the peer network intervention. Overall, treatment fidelity averaged 86% with a range of 15–100%.

Using a small sample of participants from Kamps et al. (2014, 2015), used a multiple baseline across participants design to investigate the effects of peer network interventions implemented with four students with ASD (ages 6–7) on communicative acts to peers. The same intervention procedures were used as Kamps et al. (2015). Treatment fidelity averaged 84% across participants. Results demonstrated clear increases from baseline to intervention for all four partici-pants for total communicative

clear increases from baseline to intervention for all four partici-pants for total communicative acts (i.e., initiations and responses) to peers, and Tau results indicated a statistically significant increase from baseline to implementation for total communicative acts. Generalization probes were higher in the interven-tion phase compared to the baseline phase for all three participants (generalization data were not gathered for one participant). Intervention implementers noted they felt the

data were not gathered for one participant). Intervention implementers noted they felt the intervention was feasible and indicated they noticed improve-ments in focal students’ interactions with trained and non-trained peers as reported on social valid-ity forms.

While Kamps et al. (2014, 2015) implemented peer networks with students with ASD who demonstrated functional verbal communication, peer network interventions have also been implemented with students with ASD who used aided AAC. Biggs et al. (2018) investigated the effects of a peer network inter-vention and an aided AAC modeling component using a multiple probe across participants design with two intervention phases. The interventions were implemented with three students with ASD and one

two intervention phases. The interventions were implemented with three students with ASD and one student with ID who had significant cognitive impairment and aided AAC. Partici-pants were in third or fourth grade, and 13 peers participated as peer partners. The peer network intervention consisted of an orientation meeting for the peer partners and focal students and peer network meetings where students participated in a shared activity held twice a week during lunch for three participants and

participated in a shared activity held twice a week during lunch for three participants and during indoor recess for one participant. During the second phase of the intervention, a peer-implemented aided AAC modeling component was added to the peer network intervention. This consisted of an initial training meeting to teach peers how to use aided AAC modeling and coaching support for peers during at least two network meetings. Dependent variables were interaction with peers (i.e., symbolic and

at least two network meetings. Dependent variables were interaction with peers (i.e., symbolic and nonsymbolic commu-nicative acts), symbolic communicative acts that were nonprompted, frequency of peers’ interac-tions, frequency of peer-aided AAC models, modes of symbolic and nonsymbolic communi-cation, and focal student proximity to peers, adults, and AAC device. Treatment fidelity aver-aged 96.1% across sessions. Results indicated a functional relationship between the implementa-tion of the

across sessions. Results indicated a functional relationship between the implementa-tion of the peer network and increased interac-tions between peers and the focal students. A functional relationship did not exist between the implementation of the peer network and nonprompted, symbolic communication to peers. When the peer-implemented aided AAC modeling component was added, nonprompted, symbolic communication increased, except for one participant whose peers used aided AAC modeling during the

communication increased, except for one participant whose peers used aided AAC modeling during the first intervention phase. Generalization data indicated peer interaction was higher than during pre-baseline probes and baseline phase but lower than during intervention.

### Supporting evidence in secondary settings. Peer network interventions have been implemented in secondary settings, which is both timely and needed as the prevalence of stu-dents with ASD in secondary settings now matches that of younger cohorts (Blumberg et al. 2013), and the social demands and expectations in middle and high school become more complex. Hochman et al. (2015) used a multiple baseline across participants’ design to examine the efficacy of peer network interventions on social

baseline across participants’ design to examine the efficacy of peer network interventions on social interac-tions, social engagement, social-related goal, proximity to peers and adults, and facilitator sup-port behaviors. Four male students (age 15–17) with ASD and ID participated in the study as focal students, and 11 students participated as peer partners (2–3 peers per network). The intervention consisted of an orientation meeting for the peer partners and focal students and weekly meetings

consisted of an orientation meeting for the peer partners and focal students and weekly meetings in the cafeteria. During weekly meetings, students ate, participated in a shared activity, talked about a selected topic, reflected on how meetings were going, shared ideas for new activities, discussed upcoming events they could do together, and reported interactions outside of weekly meetings. The implementation of the peer network intervention resulted in increased social engagement and peer

implementation of the peer network intervention resulted in increased social engagement and peer interactions for all students, substantial gains related to the social-related goal for one student, and increased proximity to peer partners and decreased proxim-ity to students with disabilities. Generalization data for both social engagement and peer interac-tions returned to near baseline levels for three out of four focal students. All peer partners and focal students considered each other as

for three out of four focal students. All peer partners and focal students considered each other as friends after the intervention. Treatment fidelity data were collected from an observer, coach, and facilitator. Social validity data indicated the facilitator and peer partners wanted to participate again and felt focal students benefited socially. Focal students and parents responded positively, and focal students wanted to be involved in the future.

Sreckovic et al. (2017) replicated Hochman et al. (2015) using similar intervention procedures but implemented the intervention with three high school students with ASD without comorbid ID. Using a multiple baseline across participants with probe assessments during baseline design, the following dependent variables were investi-gated: initiations and responses from students with ASD to peers and from peers to students with ASD. Bullying victimization was also exam-ined as an exploratory

and from peers to students with ASD. Bullying victimization was also exam-ined as an exploratory variable using the Bully Victimization Scale (Reynolds 2003) at four time points. Peer networks consisted of one student with ASD and three to six peer partners. All students participated in an orientation meeting (description of what a peer network is) and introduction meeting (a time for students to meet, exchange schedules, and identify common interests). Each network met approximately twice per

meet, exchange schedules, and identify common interests). Each network met approximately twice per week during lunch in an empty classroom or conference room. During weekly meetings, the facilitator encouraged students to connect outside of meetings, informally assessed student satisfaction, and provided guidance as needed as students played a game of their choice. A functional relationship was demonstrated between the implementation of the peer network intervention and total social interaction

between the implementation of the peer network intervention and total social interaction (i.e., initiations and responses from students with ASD to peers and from peers to students with ASD). Maintenance data were similar to intervention for all participants, and mean responses to and from students with ASD during generalization were greater than baseline for all three participants. Bullying victimization decreased for two participants, although changes were minimal for one student. Treatment

decreased for two participants, although changes were minimal for one student. Treatment fidelity data for the facilitator averaged 100% across sessions, and 98% across sessions for peer partners. All peer partners, parents, and school staff rated the intervention favorably, and two focal students rated intervention favorably.

Using a randomized controlled trial design, Asmus et al. (2017) examined the efficacy of peer network interventions implemented with 95 high school students with severe disabilities and 192 peer partners (3–6 partners per network). Adolescents with severe disabilities qualified for the state’s alternate assessment and/or received special education supports under the category of ID or ASD and were educated for at least one class in general education settings. Twenty-one high schools across two

educated for at least one class in general education settings. Twenty-one high schools across two states were included in the study. Intervention procedures were similar to those in Hochman et al. (2015) and Sreckovic et al. (2017); however, a peer partner training was held without the focal students. Networks met approximately once per week and partici-pated in a shared activity (e.g., meal, game) and planned times throughout the week to connect. In the comparison condition, students were

game) and planned times throughout the week to connect. In the comparison condition, students were included in at least one general education class with support from a paraprofessional or special educator and received services as stated in their individualized educational programs. Social contacts and friendship gains, social skills, and school activity involvement were examined. Treatment fidelity data averaged 95.9%. Results indicated students in the intervention group reported meeting outside

data averaged 95.9%. Results indicated students in the intervention group reported meeting outside of weekly meetings with the focal student an average of 11.4 times. Students who participated in the intervention had significantly more social contacts throughout the day and gained significantly more friends without disabilities by the end of the semester compared to students in the comparison group. No significant effects were found on parent-reported measures of out of school social connec-tions.

No significant effects were found on parent-reported measures of out of school social connec-tions. During the following semester, 33% of the peer partners reported a social contact with the focal student, and 41% reported they were friends. Teacher reported friendships and social contacts between students with severe disabilities, and those without disabilities at one semester follow-up were significantly higher for students in the intervention condition compared to the comparison condition.

higher for students in the intervention condition compared to the comparison condition. Further, students in the peer network condition had an average of 1.51 more social contacts and an average of 1.35 more friends than their counterparts in the com-parison condition. No significant differences were found at two semesters follow-up. No sig-nificant differences were found for parent-reported social contacts and friendships at one or two semesters follow-up or for school activity involvement.

contacts and friendships at one or two semesters follow-up or for school activity involvement. Based on the evidence at both the elementary and secondary levels, peer network interventions are empirically supported as effica-cious in improving social and communication outcomes.

### Future Directions All students, with or without ASD, should benefit from both the academic and social opportunities embedded in authentic educational settings. Implementing interventions to facilitate social interactions and friendship development is imper-ative to help students with ASD succeed socially and benefit from the positive consequences asso-ciated with supportive peer relationships (e.g., Rubin et al. 2009). A review of the literature highlights the positive social outcomes (e.g.,

Rubin et al. 2009). A review of the literature highlights the positive social outcomes (e.g., increased social interaction and friendships with peers without disabilities) that result from implementing peer network interventions and areas of future research. As the efficacy base continues to expand, future research teams are encouraged to consider the following research recommendations. First, peer network interventions consist of several components that are flexible to meet the needs of the

peer network interventions consist of several components that are flexible to meet the needs of the focal student. Research teams are encouraged to conduct component analyses to examine the extent to which each component is necessary to yield desired outcomes. Further, intervention length ranged across studies (e.g., 1 month, one semester; one meeting per week, three meetings per week). Research is needed to determine optimal intervention intensity and dosage (e.g., recommended length of

is needed to determine optimal intervention intensity and dosage (e.g., recommended length of intervention and optimal meeting contexts) that result in desirable and generalizable outcomes. Second, while several studies included generalization probes, these findings varied. More research is needed on how to maintain impact over time. Further, more research is needed on the long-term outcomes of peer network interventions. Longitudinal studies are needed to determine effects at 1-year follow-up.

network interventions. Longitudinal studies are needed to determine effects at 1-year follow-up. Similarly, more research is needed on friendship development both within and outside of the peer network. Do students with ASD develop reciprocal friendships with their peer partners and with other peers and does their social network centrality change after the peer network intervention is introduced?

Finally, research teams are encouraged to examine the impact of peer network interventions beyond the K-12 education setting. Peer networks may be efficacious in work settings to increase sustainability in employment, in post-secondary education settings to increase participation in campus life, and in community settings to increase community engagement and overall quality of life. In summary, the field has greatly expanded with regard to peer network interventions for youth and adolescents with

field has greatly expanded with regard to peer network interventions for youth and adolescents with ASD. The inter-vention has proven to be flexible, feasible to implement, and efficacious at improving social/ communication outcomes for students with ASD across the K-12 continuum. Without targeted interventions and intentional efforts to foster meaningful relationships for students with ASD, students with ASD are unlikely to develop relationships (Carter et al. 2008). Therefore, implementing

with ASD are unlikely to develop relationships (Carter et al. 2008). Therefore, implementing targeted interventions, such as peer network interventions, is imperative to sup-port the social success of students with ASD.

### Efficiency (Behavioral Assessment)  ### Definition Efficiency refers to the principle that responses which require less effort and produce more rein-forcement will occur more frequently than responses that require more effort and produce the same or less reinforcement. Responses that take less effort and produce a similar level of reinforcement as more effortful responses are con-sidered to be more efficient. To increase the like-lihood that a desired behavior will occur, the environment or

more efficient. To increase the like-lihood that a desired behavior will occur, the environment or other antecedents can be manipulated to increase the efficiency of the response (decrease the response effort), therefore making the response more likely. To decrease the likelihood that an undesirable behavior will occur, the efficiency of that response should be decreased (increase response effort), therefore making it more likely that the individual will engage in competing behaviors that require

therefore making it more likely that the individual will engage in competing behaviors that require less effort.

### Effort (Behavioral Assessment)  ### Synonyms Response effort  ### Definition Response effort is the amount of effort that a person must put forth to successfully complete a specific behavior. The amount of effort required to complete the behavior has an impact on the fre-quency at which that behavior will be emitted. If two responses result in fairly equal reinforcement, the behavior that requires less response effort is more likely to occur than the behavior that requires more response

requires less response effort is more likely to occur than the behavior that requires more response effort.

### Egypt and Autism  ### Historical Background Egypt is located in North Africa, bordering the Mediterranean Sea, between Libya and the Gaza Strip. Genetic diseases in Egyptians have been known since the days of the pharaohs as recorded in the ancient history. Gene flow to Egyptian population occurred from Greco-Roman, Arab, Turkish, French, and English settlers. For reasons of custom, tradition, culture, and socioeconomic benefit, consanguineous marriages occur in approximately half, and

culture, and socioeconomic benefit, consanguineous marriages occur in approximately half, and first-cousin marriages occur in one third of Egyptians (Yamamah 2012). The population of the region is character-ized by large family size, high maternal and pater-nal age, and a high level of inbreeding with consanguinity rates. Women are continuing to bear children until menopause increasing the pre-disposition to inherited disorders.

Developing countries are facing an alarming gap between innovations in childhood learning and developmental disabilities (LDD) research and their delivery to communities. Important problems include illiteracy (especially among women), lack of job opportunities (especially for young people), and slow economic growth because of loss of traditional economies, low pro-ductivity, and lack of innovation and competitiveness. There is a critical gap in autistic spectrum disorder (ASD) research with

and competitiveness. There is a critical gap in autistic spectrum disorder (ASD) research with respect to manifes-tations of the condition in developing countries. This gap is now attaining public health signifi-cance. On one hand, they prioritize the control and eradication of infectious diseases and repro-ductive maternal health. On the other hand, LDD research receives scant attention and almost no funding from donor agencies that specialize in addressing the problems of developing nations.

no funding from donor agencies that specialize in addressing the problems of developing nations. While Egypt has shown considerable progress in the prevention and combating of infectious diseases, genetic disorders remain a major health problem. There are no comprehensive data on disabilities currently available. The importance of medical genetics in pediatric departments of Egyptian universities was well appreciated in the early 1960s at Cairo and Ain Shams Universities in Egypt. At 1966,

was well appreciated in the early 1960s at Cairo and Ain Shams Universities in Egypt. At 1966, Prof. Samia and her colleagues started the specialty of human genetics at the National Research Centre (NRC) followed by molecular genetics at 1985 (El Awady and his colleagues at the NRC). In 1967, medical genetics unit (Prof. Suzan Rushdy and her colleagues) was established at the Medical Research Institute in Alexandria. This was followed by the initiation of medical genetics units in other

Institute in Alexandria. This was followed by the initiation of medical genetics units in other universities such as El-Mansoura (Prof. Mohamed Hafez). Mubarak City of Scientific Research encompasses centers for frontier sciences including genetic engineering and biotechnology. Human genetic courses are now introduced in the curriculum of medical stu-dents in most universities. Specialized postgradu-ate degrees in the field of medical human genetics are offered to graduates from medical schools

degrees in the field of medical human genetics are offered to graduates from medical schools in Egypt at Ain Shams and Alexandria Universities. Training programs given by specialized geneti-cists from different institutions are offered to phy-sicians from the Ministry of Health and Population.

On the other hand, Egypt has 19 medical schools; all of them have psychiatric departments, some of which are departments of neuropsychia-try. They have offered a master’s degree in psy-chiatry for the past 25 years and a doctorate for the past 20 years. In general, there are few psychia-trists specializing in childhood problems (Okasha 2004). Nowadays, there are psychiatrists and psy-chologists specializing in the mental health needs of people with mental retardation. This is the case in Egypt

in the mental health needs of people with mental retardation. This is the case in Egypt where people with mental retardation and mental disorders are seen by general psychia-trists, pediatricians, and other professionals with-out specialist knowledge of their problems. Prevalence of autism spectrum disorders among children with developmental disorders in Egypt was documented to be 33.6 % (Seif eldin et al. 2008). This preliminary finding needs to be corroborated and extended, in conjunction with

et al. 2008). This preliminary finding needs to be corroborated and extended, in conjunction with better descriptions of normal early childhood development. There is a need for both community and school-based studies on epidemiology of autism spectrum disorders in Egypt. The pioneer works on autism spectrum disor-ders in Africa had been by Longe and Asuni (Longe and Asuni 1972) and Lotter (1978, 1980) about three decades after the first report of autism spectrum disorder by Kanner in 1943 (Kanner

about three decades after the first report of autism spectrum disorder by Kanner in 1943 (Kanner 1943). With the rise in the prevalence of autism spectrum disorders (ASD) in the Arab countries, the development of an Arabic tool for early diag-nosis and intervention was sought as part of an effort to better understand the prevalence of this disorder. The Modified Checklist for Autism in Toddlers (M-CHAT) was chosen (Seif Eldin et al. 2008). Many factors may contribute to the substantial

(M-CHAT) was chosen (Seif Eldin et al. 2008). Many factors may contribute to the substantial underdiagnosis of ASD cases in developing coun-tries. One of the factors is the difficulty in obtaining a diagnosis, as the pediatricians are often inexperienced in the diagnosis and manage-ment of these disorders. The lack of awareness among parents regarding ASD, including a failure to recognize symptoms and seek diagnosis and treatment, is also likely to be a factor, especially in cases of children

and seek diagnosis and treatment, is also likely to be a factor, especially in cases of children with mild forms of the disor-der (Al-Farsi et al. 2010). Most of the children diagnosed with autism belonged to families of low socioeconomic standards with unsatisfactory income, in Egypt and Jordan, along with a lower paternal education level (Mostafa et al. 2012).

### Legal Issues, Mandates for Service The condemning of women who are obligated to continue her pregnancy with disabled outcome is indicative of our society’s prejudice against dis-abled people and women. Egyptian women were expected to stay at home, take care of the children, and let their husband bring home the paycheck. Most of them were dominated by the man of the house, providing whatever the man dictated, food on the table when they come home, house cleaned, kids taken care of, and

the man dictated, food on the table when they come home, house cleaned, kids taken care of, and anything else handled. Egyptian women suffer from various forms of stigma manifested during marital and social events, schooling, and employment. The stigma linked with being mothers of a disabled child is so deeply rooted that it plays a central role in many aspects of their life. Many mothers felt they had “lost” aspects of their personal identity, with the role of motherhood dominating how they

they had “lost” aspects of their personal identity, with the role of motherhood dominating how they felt about themselves and how other people viewed them. One of the most influential factors in those cases is the socioeconomic constraint. When both parents have a good socioeconomic state, they have a different level of thinking and can rationalize the fact it is nobody’s fault their child was born with special needs, and they believe there are several ways to help him/her and support him/her,

with special needs, and they believe there are several ways to help him/her and support him/her, and most probably, they do have few means to help supporting him/her and start to isolate themselves away from their friends and other family members. The cases where the father decides to leave mostly show (in all the cases I’ve seen) that the parents are not highly educated and some have a rather low financial status. The father then can easily blame his wife for this child and simply leave them to

financial status. The father then can easily blame his wife for this child and simply leave them to start a new life elsewhere with new wife, leaving them with no financial support and certainly no emotional support.

As a challenge to the family, autism must rank among the most stressful of childhood develop-mental disabilities. The autistic disorders require the practitioner to work with different types of subjects, including the patient, the parents and other caregivers, those working in the school sys-tem, and other professionals involved in mental health. In our current understanding of the phe-nomena of identical gene copies for children of first-cousin marriages, will inherit identical gene from each

identical gene copies for children of first-cousin marriages, will inherit identical gene from each parent in 1/16 of their gene loci (F ¼ 0.0625), giving birth to disabled children. How-ever, the prevailing culture and ignorance lead the society and husbands to blame the women who bear disabled children because of this. The condemning of women who are obligated to con-tinue her pregnancy with disabled outcome is indicative of our society’s prejudice against dis-abled people and women. Also, the

outcome is indicative of our society’s prejudice against dis-abled people and women. Also, the burden of care is a matter of socio-structural constraints rather than only emotional distress.

In developing countries, basic needs such as nutrition, water, and sanitation often overshadow mental health concerns. In many developing countries, up to half of the population is children (Hong et al. 2004; Robertson et al. 2004). The difficult circumstances found in many countries violate the basic rights of children (Robertson et al. 2004). The government of Egypt places a high priority on disability, with governmental and non-governmental organizations working together to solve disability

with governmental and non-governmental organizations working together to solve disability issues. However, current services cover only 10% of the total number of persons with disabilities. Services in Egypt are still limited in spite of the new policy of deinstitutionalization and the provision of community care. Community care in the form of hostels, day centers, rehabili-tation centers, and health visitors is only available in major cities. Mental health legislation was introduced in Egypt in

visitors is only available in major cities. Mental health legislation was introduced in Egypt in 1944, in advance of most other Arab and African countries (Okasha 2004).

The chronic nature of autism can be draining to some parents, and there is a risk of parents becom-ing exhausted. Attitudes of the two parents toward the female were more negative. According to the 1975 Rehabilitation of Disabled Persons Act, any type of business that has over 50 employees must include at least 5% of people with physical or mental disabilities as part of their total workforce. Although on paper people with autism are sup-posed to be included, but much like with all other

Although on paper people with autism are sup-posed to be included, but much like with all other mental and physical disabilities, the reality is from what the law stipulates. The Ministry of Education issued a minstrel decision in April of 2009 to include 10% of children with special needs in mainstream schools, with no more than four of those children in each class. Those 10% are around 152, 800 children out of an estimated seven million people born with disabilities in Egypt. However, there

children out of an estimated seven million people born with disabilities in Egypt. However, there are not enough trained professionals to deal with people with disabilities in general, let alone with a complex disorder such as autism. Launching our own awareness campaign against the stigma associated with mental illness should be addressed.

Special schools for intellectually disabled: These schools are free of charge and are situated in the major cities in the greater Cairo area. They accept students with mild intellectual disability. Also, some private schools have opened class-rooms in their schools to serve intellectually dis-abled children. Those schools charge high fees and usually accept mild cases. The high prices of most of the services cannot be afforded by many families. However, there is an unfair geographical

most of the services cannot be afforded by many families. However, there is an unfair geographical distribution of services provided to intellectually disabled individuals. Most of the services are sit-uated in Cairo, although 64 % of the mentally challenged live in rural areas and countryside. We have shortage of professional manpower such as specialized doctors, nurses, psychiatrists, psychotherapists, teachers, etc. which is a major barrier against the spread of the rehabilitation pro-grams

teachers, etc. which is a major barrier against the spread of the rehabilitation pro-grams in Egypt.

Parents having an autistic child will pass through several coping stages, namely, denial, anger, and guilt, bargaining, and finally accep-tance; they must deal with the grief they feel over absence of healthy imagined child (King et al. 2006). Coping is a process of readjusting attitude, feeling, perception, and beliefs about self and others, while coping style is a particular cop-ing mechanism used repeatedly by a person in different situations. Among Egyptians, maladap-tive coping strategies

repeatedly by a person in different situations. Among Egyptians, maladap-tive coping strategies are mechanisms used to reduce a person’s emotional response to stressful circumstances in a short term, but lead to greater difficulties in the long term; moreover, the treat-ment services available for late adolescents and adults with autism are quite limited.

Epidemiological data are important for the development of public policy and programs to improve children’s mental health. Epidemiologi-cal research answers the following questions (Leibson et al. 2001): How many children in the community have mental health problems? How many children make use of mental health ser-vices? What is the distribution of mental health problems and services across age, sex, and ethnic group? Are there historical trends in the frequency of child mental health problems?

and ethnic group? Are there historical trends in the frequency of child mental health problems? What is the developmental course of mental health problems from childhood to adulthood? What etiological factors can be identified to inform the design of prevention and treatment programs? How cost-effective are child mental health services? What are the outcomes for children who receive ser-vices? The answers to these questions provide a rational basis for service design and implementation.

### Overview of Current Treatments and Centers Epidemiological surveys are viewed as a priority that extends beyond the need for objective and robust estimates of prevalence. These provide additional valuable benefits as they often result in systematic information regarding existing ser-vices and may help in assessing the needs and priorities for Egyptian community. Epidemiolog-ical studies themselves may also eventually pro-vide revealing findings regarding the manifestation of PDD across

themselves may also eventually pro-vide revealing findings regarding the manifestation of PDD across cultures.

A review of global prevalence of ADS by Elsabbagh et al. (2012) reported a median of 62 cases per 10,000 people with average 4.3:1 male-to-female ratio. There is a lack of evidence from low- and middle-income countries. We could not identify published data on population-based estimates of prevalence of PDD from Egypt.

Level of knowledge and awareness about autism spectrum disorder is low among the gen-eral population and health care workers in Egypt. There is need for community education of the general population and continuous medical edu-cation for health care workers on issues relating to autism spectrum disorder. This would enhance early recognition and interventions and in turn improve prognosis. The mothers of autistic chil-dren are vulnerable to psychological distress; fam-ilies have been burdened by

of autistic chil-dren are vulnerable to psychological distress; fam-ilies have been burdened by financial concerns, worries about health of autistic children (Elbahnasawy and Girgis 2011).

Cohen and Volkmar (2005) reported that par-ents typically are active partners in their children’s education to ensure that skills are learned in the educational program; they transfer to the home setting and teach their children many behaviors that are best mastered in the home and commu-nity. Regional variation in parental education may still determine their help seeking for autism (Seif Eldin et al. 2008) and that it is predominantly severe cases that are currently being identified in

Eldin et al. 2008) and that it is predominantly severe cases that are currently being identified in developing countries like Egypt and more specif-ically in poor communities. We recommend that continuous health education and counseling pro-grams are necessary to improve mothers’ coping patterns toward care of their autistic children. Feeling skilled and informed is needed to mother’s sense of competence, their ability to make the right decisions, and their ability to sup-port their child’s

competence, their ability to make the right decisions, and their ability to sup-port their child’s well-being and development to lessen their stigma.

There are more than 50 Egyptian Association of Autism – Egyptian schools (egyptian-schools.com/en/schools/egyptian-association-of-autism/). Examples are Autism Solutions (www.autismas pirations.com/), Autism: Preschool (readingroom.mindspec.org/), and Autism Is Treatable (www.tacanow.org/). The purpose of these schools is to provide helpful information about autism and tools and strategies to achieve positive interactions and increase learning for all members of the school community. They

achieve positive interactions and increase learning for all members of the school community. They tried to provide valuable infor-mation for general education and administrative school staff, aides, office staff, bus drivers, nurses, custodians, classmates, and family mem-bers who interact with students with autism. Most of the successful schools and associations are nongovernmental and of expensive costs, so in fact services are often “paid out of pocket.” The Ministry of Health is urged to

costs, so in fact services are often “paid out of pocket.” The Ministry of Health is urged to launch a comprehensive program to improve the status of autistic children in Egypt. Recently, teachers and support personnel in schools sporadic in the Egyptian community have been recognized and increased (Abdel et al. 2012). However, most of them are not qualified, some are mothers of autistic children, and others attended training workshops supervised by unqualified nonspecific personnel, which are

and others attended training workshops supervised by unqualified nonspecific personnel, which are more a myth than a reality. School-based consultation ser-vices for child mental health do not operate reg-ularly to the extent required in developing countries. This gap leads to a failure to prevent school dropout and other significant consequences.

### Overview of Research Directions Of the 84.6 million people living in Egypt, 29 % are children under age 15. Until recently, identifi-cation and treatment of child mental health prob-lems have not been a high priority in Middle East countries. Although autism occurs in all cultures and countries, most of the published researches have come from Western countries. Little is known about its clinical correlates and comorbidity in Middle Eastern and Arab countries (Al-Salehi et al. 2009).

clinical correlates and comorbidity in Middle Eastern and Arab countries (Al-Salehi et al. 2009). Publications on child psychiatry, in particular, on topics such as autism were found to be underrepresented among Egyptian population. Very low research is yet to investigate the effects of culture on autism; effect of culture among Egyptian and Saudi population suffering autism on the age of diagnosis and seeking for interven-tion of autism was studied by Hussein et al. (2011). They concluded that

and seeking for interven-tion of autism was studied by Hussein et al. (2011). They concluded that the age at diag-nosis and at the commencement of intervention was lower in the Egyptian group. The Saudi group showed a higher percentage of missing examina-tions, older birth order, and significantly higher preference to drug treatment, while the Egyptian group showed a high preference to behavioral and phoniatric therapies, higher paternal and maternal education, higher employment among parents,

and phoniatric therapies, higher paternal and maternal education, higher employment among parents, and higher family concern. They highlight that cultural context may significantly influence the age of detection and the age of starting the intervention.

There are few studies investigating the parents’ attitudes toward their autistic child (Obaid 2012). The medical community in the Middle East needs to redouble its efforts to ensure early diagnosis and the best intervention in children with autism. In Egypt and North Africa, there has been a fivefold decrease in child mortality in recent decades. This success has also come with a push to improve the quality of life for children and foster their development during the early years of life. This

the quality of life for children and foster their development during the early years of life. This includes recognition of autism, a condition long hidden in much of the Arab world. Hussein et al. (2012) reported that most parents first sought the advice of pediatricians for their child’s mental health problem, and a substantial number consulted traditional healers. They rec-ommend that awareness programs targeting pedi-atricians and elementary school teachers are urgently needed in Egypt to

programs targeting pedi-atricians and elementary school teachers are urgently needed in Egypt to shorten the duration of undiagnosed illness among children. The Arab world lacks centers to collect and organize Arab medical documents and to dissem-inate the available information. A study on increasing people awareness with the aid of health team professionals in pro-mpting tolerance and understanding of autism was done by Elbahnasawy and Girgis (2011). On the other hand, studying the

understanding of autism was done by Elbahnasawy and Girgis (2011). On the other hand, studying the environmental risk factors of autism was reviewed by El Baz et al. (2011). They reported that low birth weight and delivery by caesarian section were signifi-cantly higher among cases than controls. In addition to hypoxia, resuscitation and history of jaundice were considered significantly risk factors for autism.

Nutritional assessment and complementary intervention in autistic children represent one aspect for researchers in Egypt. A pilot study done by Allam et al. (2008) was done investigat-ing the effect of scalp acupuncture and language in autistic children. They find out some improve-ment in expressive language when combined with language therapy. Meguid et al. (2010a) reported an article investigating the potential role of vitamin D in autism through serum level assessment. They concluded that

the potential role of vitamin D in autism through serum level assessment. They concluded that serum values of 25(OH)D in the children with autism of this study could classify them as being “vitamin D inadequate,” which lends support to the hypothesis that autism is a vitamin D deficiency disorder. Another study by Ibrahim and El-Sayed (2012) discussed the role of dietary imbalances in the incidence of developmental dis-orders mainly conditions considered as leading causes for abnormal nervous

of developmental dis-orders mainly conditions considered as leading causes for abnormal nervous system development and altered function. They emphasized the need of dietary supplements. Iron metabolism alteration as a risk factor for several neurodegenerative disor-ders was investigated by Gebril and Meguid (2011). They reported on a pilot study for the association of HFE polymorphisms and autism. They did not find association of autism with the genes they worked on and recommended to include

They did not find association of autism with the genes they worked on and recommended to include other iron metabolism genes. While many aspects of autism remain poorly understood, major advances have been made in terms of highlighting the genetic part in advanced countries (Abrahams and Geschwind 2008) and few scanty publications from Egypt (Novarino et al. 2012).

Till date, research in autism in Egypt is spo-radic regarding different issues: Different studies on the brain of autistic children were done; a study to assess white matter integrity of autistic preschool children with diffusion-weighted MR imaging was done by Abdel Razek et al. (2013). The study was car-ried out on 19 autistic preschool children. They reported that the apparent diffusion coefficient value is helpful in the assessment of the integ-rity of the white matter in autistic preschool

value is helpful in the assessment of the integ-rity of the white matter in autistic preschool children and well correlated with CARS score, social age, and language age. Another study was done by Mostafa et al. (2008) where they proposed that autoimmunity to brain could play an etiopathogenic role in autistic patients. The frequency of serum anti-myelin-associated glycoprotein antibodies, as an index for auto-immunity to brain, and their relation to family history of autoimmunity were

as an index for auto-immunity to brain, and their relation to family history of autoimmunity were investigated in 32 autistic and 32 healthy matched children. They shed light on the etiopathogenic role of anti-myelin-associated glycoprotein antibodies and the role of immunotherapy in autism. The third Egyptian study regarding brain morphol-ogy of autistic children was done by Meguid et al. (2010b). Fragile X syndrome shares most of the behavioral phenotypic similarities with autism. How are

Fragile X syndrome shares most of the behavioral phenotypic similarities with autism. How are these similarities reflected in brain morphology? A total of ten children with autism and seven with fragile X syndrome underwent morphological (T1) 1.5-T magnetic resonance imaging (MRI). The authors found no significant difference in total brain volumes, regional volumes, gyrification index, sulcal depth, and cerebral cortical thickness. How-ever, children with autism showed significant decrease in the

and cerebral cortical thickness. How-ever, children with autism showed significant decrease in the medial prefrontal bilaterally and the left anterior cingulate cortices. Regres-sion analysis revealed positive correlation between the medial prefrontal cortical thick-ness and the social IQ. The authors suggest that the difference between the two groups in the medial prefrontal and anterior cingulate cortices thickness may entail an altered social cognitive style. Functional MRI studies directly

cortices thickness may entail an altered social cognitive style. Functional MRI studies directly differentiating between social indiffer-ence (autism) and social avoidance (fragile X syndrome) are needed to further characterize the spectrum of social abnormalities between these two groups. Future functional MRI stud-ies, with their noninvasive in vivo capacity in measuring the social behavior phenotypes and in correlation with the FMR1 gene, are needed to advance the efforts to elucidate the

and in correlation with the FMR1 gene, are needed to advance the efforts to elucidate the genetic and neural mechanisms underlying social behavior disturbances in fragile X syndrome and autism.

Meguid et al. (2007) found that the prevalence of fragile X syndrome among Egyptian males is 0.9:1,000, constituting for 6.4% among men-tally subnormal males. The prevalence of ADS among Eastern Mediter-ranean is as follows: 29/10,000 in the United Arab Emirates (Eapen et al. 2007), 1.4/10,000 in Oman (Al-Farsi et al. 2010), and 6.3/10,000 in Iran (Samadi and McConkey 2011). The relatively low prevalence in the Omani and Iranian studies was attributed to prevalence caused by underdiagnosis and

in the Omani and Iranian studies was attributed to prevalence caused by underdiagnosis and underreporting of cases resulting from limited access to ser-vice centers (Al-Farsi et al. 2010). Defective antioxidant enzymes and increased lipid peroxidation in Egyptian children with autism have been studied and reported by Meguid et al. (2011).

### Neuroimmunological Aspect of Autism Immunological disorders are one of several con-tributing factors that have been suggested to cause autism. Kawashti et al. (2006) detected circulating IgA and IgG autoantibodies to casein and gluten dietary proteins done by enzyme immunoassays (EIA). Circulating IgG anti-bodies to measles, mumps, and rubella vaccine (M.M.R) and cytomegalovirus were also inves-tigated by EIA in a sample of 30 autistic Egyp-tian children. They concluded that autoimmune

inves-tigated by EIA in a sample of 30 autistic Egyp-tian children. They concluded that autoimmune response to dietary proteins and deficient immune response to measles, mumps, and rubella vaccine antigens might be associated with autism, as a leading cause or a resulting event. Further research is needed to confirm these findings.

Mostafa and Kitchener (2009) studied the fre-quency of antinuclear antibodies in 80 Egyptian autistic children and their relationship to a family history of autoimmunity. They found out that antinuclear antibody seropositivity had significant positive associations with disease severity, mental retardation, and electroencephalogram abnormal-ities. The study recommended that autoimmunity may play a role in a subgroup of children with autism. Another study by Mostafa and Shehab (2010) investigates

role in a subgroup of children with autism. Another study by Mostafa and Shehab (2010) investigates the link of C4B null allele to autism and to a family history of autoimmunity in Egyptian autistic children. They concluded the possible link of C4B null allele to autism and to a family history of autoimmunity highlighting the possible contributing role to autoimmunity in autism.

Recently, the link between some alleles on human leukocyte antigen system and autistic chil-dren was investigated by Mostafa et al. (2013). They highlighted the probable protective associa-tion of HLA-DRB1 03 allele with autism. It war-rants a replication study of a larger sample to validate the HLA-DRB1 genetic association with autism. This is important to determine whether therapeutic modulations of the immune function are legitimate avenues for novel therapy in selected cases of autism.

### Social Policy and Training Local authority training programs which help to spread knowledge and understanding should aim at extending expertise at different skill levels and to different sectors and should be open to all staff, not restricted for teachers only. In addition, recording of conferences and other sessions should be made available using high technology as webcasts so that they can be more accessible to a larger audience. Schools training policy should include an audit of

can be more accessible to a larger audience. Schools training policy should include an audit of existing skills, autism-specific qualifications, and training needs and should pro-vide planning to meet those needs. Staff should be funded to participate in accredited courses in autism.

### Eisenberg, Leon  ### Name and Degrees Leon Eisenberg received both his BA and MD degrees from the University of Pennsylvania. He completed an internship at Mt. Sinai before teaching briefly at the University of Pennsylvania. Following work as a psychiatrist in the US Army, he became a resident at Sheppard Pratt Hospital before beginning child psychiatry training at Johns Hopkins.

### Major Appointments (Institution, Location, Dates) Johns Hopkins University: Baltimore, MD, 1953–1967, Instructor, Associate Professor, and Professor and Chief of Child Psychiatry. Harvard University, Cambridge, MA, 1967–1993, Professor of Psychiatry, Chair Department of Social Medicine and Health Policy, Maude and Lillian Presley Professor of Social Medicine, Emeritus status in 1993.

### Major Honors and Awards Leon Eisenberg was the recipient of numerous honorary degrees and awards; some of the major awards include the Richmond award from the American Academy of Pediatrics, the Thomas W. Salmon Medal from the New York Academy of Medicine, and Juan José López Ibor Award from the World Con-gress of Psychiatry. In addition, several awards have been named in his honor. In 2009, the Leon Eisenberg Chair of Child Psychiatry at Children’s Hospital Boston was named in his honor.

### Landmark Clinical, Scientific, and Professional Contributions Dr. Eisenberg conducted the first follow-up study (with Leo Kanner) of children with autism. Other accomplishments included his role in the first randomized control study of psychopharmacol-ogy in children and the first randomized con-trolled trial of stimulants in adolescents and of brief psychotherapy. He had long-standing inter-ests in the social brain and in social medicine including an active role in working with Physi-cians

in the social brain and in social medicine including an active role in working with Physi-cians for Human Rights.

### Short Biography A child psychiatrist and medical educator, Dr. Eisenberg was an original contributor to a series of innovations in the field of child psychia-try. These included, in collaboration with his men-tor Leo Kanner, MD, some of the first follow-up studies of children with autism, in development of randomized clinical trials (RCTs), evidence-based medicine, and social medicine and international advocacy including for human rights. Dr. Eisenberg followed Leo Kanner as the leader of

advocacy including for human rights. Dr. Eisenberg followed Leo Kanner as the leader of child psychiatry at Johns Hopkins until his retirement there in 1967. At that time, he moved to Harvard University where he assumed leadership of the child psychiatry program. In 1974, he was appointed the Maude and Lillian Presley Professor of Psychiatry and, in 1980, became chair of the Department of Social Medi-cine and Health Policy until his retirement in 1993 when he became emeritus. He remained an

Medi-cine and Health Policy until his retirement in 1993 when he became emeritus. He remained an active researcher and advocate until shortly before his death.

### Elavil (Amitriptyline)  ### Synonyms Amitriptyline; Endep; Levate  ### Definition Elavil is a tricyclic antidepressant (TCA). By blocking their reuptake by presynaptic neurons, TCAs increase the synaptic levels and action durations of noradrenaline and serotonin. Seroto-nin is an inhibitory neurotransmitter that is heavily involved in mood and emotion regulation and has been found to be elevated in the whole blood and platelets of ASD patients. In addition to their reuptake-inhibiting

elevated in the whole blood and platelets of ASD patients. In addition to their reuptake-inhibiting properties, TCAs also exert antagonistic effects on histamine H2, sero-tonin 5-HT2, α1-adrenergic, and muscarinic ace-tylcholine receptors. While many of these neurotransmission systems have been implicated in autism pathogenesis, the generally low receptor specificity results in a high toxicity profile. Side effects include nausea, drowsiness, weakness, dry mouth, changes in appetite or weight

profile. Side effects include nausea, drowsiness, weakness, dry mouth, changes in appetite or weight gain, consti-pation, blurred vision, increased sweating, and decreased sexual drive. Low doses of this drug do show promise in the treatment of hyperactivity, impulsivity, aggression, and self-injury in ASD patients. However, further substantial validation is still required. A Cochrane review in 2012 did not currently recommend the use of tricyclic anti-depressants for the treatment of

in 2012 did not currently recommend the use of tricyclic anti-depressants for the treatment of individuals with autism spectrum disorder.

### Elderly with Autism Spectrum Disorders  ### Definition Kanner’s sentinel article Autistic Disturbances of Affective Contact focused on children, and this autism research and inquiry has been focused on children and adolescents on the autism spectrum (Jang et al. 2014; Kanner 1943; Perkins and Berkman 2012; Wise et al. 2017). However, as our knowledge about the autism spectrum has increased, more research about adults and elderly people with this condition is emerging. This entry begins

more research about adults and elderly people with this condition is emerging. This entry begins with an overview of the propor-tion of age cohorts which are examined in autism research. It will then summarize the small amount of published research about elderly people on the autism spectrum. This will be followed by an explanation for why this population is rarely researched and areas where more research about this age cohort could be useful in meeting individual needs as well as wider public

research about this age cohort could be useful in meeting individual needs as well as wider public health goals.

### Historical Background Since the publication of Kanner’s writings about autism, there has been a systematic and ongoing effort to examine children with autism, resulting in a dearth of research about other cohorts. In 2014, Jang and colleagues published a study where they calculated the proportion of age cohorts in autism articles which were published from 1994 to 2004. They collected and analyzed 2857 articles from 7 journals which specialized in publishing articles about the autism

analyzed 2857 articles from 7 journals which specialized in publishing articles about the autism spectrum. They excluded letters to the editor, meta-analysis studies, and systematic literature reviews. Participants were classified and assigned to one of the four age categories: infants/toddlers (0–3 years), children (4–9 years), adolescents (10–19 years), and adults (>20 years, with further breakdown for those over 60). Jang et al. (2014) found that 94% of all studies (n ¼ 2688) which they

for those over 60). Jang et al. (2014) found that 94% of all studies (n ¼ 2688) which they collected and analyzed examined infants, toddlers, children, and adolescents (between 0 and 19 years of age). In contrast, 3% of studies (n ¼ 75) examined adults on the autism spectrum aged 60 years or older. Jang et al. (2014) concluded that most of our knowledge about the autism spectrum has been obtained from infants, children, and adolescents. Furthermore, based on this finding, Jang et al. (2014)

from infants, children, and adolescents. Furthermore, based on this finding, Jang et al. (2014) proposed that more research should be conducted on the adults since most of a person’s life occurs in adulthood.

### Current Knowledge There are publications which have reviewed the types of research published about elderly people on the autism spectrum (Bennett 2016; Happé and Charlton 2012; Patra 2016; van Heijst and Geurts 2015; van Niekerk et al. 2011; Wright et al. 2013). Bennett (2016) cited five studies about elderly people on the autism spectrum which examined executive functions and memory, diagnostic instruments used to identify Asperger syndrome in seniors, and diagnosing depression in elderly

instruments used to identify Asperger syndrome in seniors, and diagnosing depression in elderly people with Asperger syndrome. Happé and Charlton (2012) published a literature review focused on articles which explored elderly people on the autism spectrum. The stud-ies which they collected were assigned to one of three categories: (1) case studies of elderly people on the autism spectrum, (2) discussion papers which outlined the challenges of diagnos-ing autism in seniors, and (3) articles

discussion papers which outlined the challenges of diagnos-ing autism in seniors, and (3) articles explaining empirical findings from surveys of studies about elderly people with autism. Patra (2016) published a systematic literature review of studies about seniors on the autism spectrum stored on the PubMed electronic citation database. They identified 12 English language studies which met their inclusion criteria. The oldest study which they retrieved was published in 2013, and the most recent

criteria. The oldest study which they retrieved was published in 2013, and the most recent study was published in June 2016. The studies which they examined explored the physical health, psychological well-being, and cognitive or social functioning of elderly people with autism. Finally, van Niekerk et al. (2011) published a systematic review of studies about the instruments used to diagnose the autism spec-trum in elderly people. They searched for relevant articles on PubMed, PsychLIT, and

autism spec-trum in elderly people. They searched for relevant articles on PubMed, PsychLIT, and EMBASE which were published from 1996 to December 2009. They identified three studies which met their inclusion criteria. These studies examined all showed the importance of identifying the autism spectrum in the elderly and explained the long-term consequences of not identifying this condition within the elderly. In summary, there is a paucity of literature about elderly on the autism spectrum.

Aside from systematic literature reviews, stud-ies have also examined the executive functions and memory abilities of elderly people with autism (Geurts and Vissers 2012). Geurts and Vissers’s (2012) study compared the neuropsy-chological profile of elderly adults on and not on the autism spectrum. They sampled 23 elderly adults on the autism spectrum (18 males, 5 females; mean age ¼ 63.6 years, SD ¼ 7.5 years) and 23 elderly adults not on the autism spectrum (18 males, 5 females; mean age ¼

SD ¼ 7.5 years) and 23 elderly adults not on the autism spectrum (18 males, 5 females; mean age ¼ 63.7 years, SD ¼ 8.1 years). In addition, out of 23 elderly adults on the autism spectrum, 16 had Asperger syndrome, 2 had autism, 1 had a diagnosis of pervasive developmental disorder-not otherwise specified, 1 had an autism spectrum disorder diagnosis, and the remaining 3 had autistic tendencies. In comparison to those not on the autism spectrum, Geurts and Vissers (2012) found that elderly people

comparison to those not on the autism spectrum, Geurts and Vissers (2012) found that elderly people on the autism spectrum had deficits with their working memory and had different cognitive profiles and trajectories of cognitive development. Jang et al. (2014) posited that most studies about the autism spectrum focused on children rather than adults or elderly. It is possible that a barrier to research around elderly people is less likely to have been diagnosed with an autism spectrum disorder.

around elderly people is less likely to have been diagnosed with an autism spectrum disorder. According to Bennett (2016), current assessment processes and instruments used to diagnose autism have not been tailored to identify autism in the elderly. Often an autism diagnosis is based on a mixture of clinical tests, clinical observations of the patient, and the patient’s family providing the clinician with a description of their relative’s behaviors. For patients who are elderly, however, such

with a description of their relative’s behaviors. For patients who are elderly, however, such an approach might not be effective in diagnosing autism. During old age, elderly people often live alone or in nursing homes where regular contact with immediate or extended family members is limited (Bennett 2016). Additionally, James et al. (2006) explain that the questions which clinicians use in autism diagnostic assessments for children might not be appropriate for seniors. For example, while a

diagnostic assessments for children might not be appropriate for seniors. For example, while a clinician might be able to diagnose a child with autism by asking him/her questions about his/her friendships, such questions might not be applicable for seniors because their social network is smaller and they might have less social contacts. Furthermore, Geurts and Vissers (2012) explain that the clinical tests used to diagnose children on the autism spectrum are difficult to translate and apply to

tests used to diagnose children on the autism spectrum are difficult to translate and apply to elderly people on the autism spectrum. Finally, Mukaetova-Ladinska et al. (2012) explain that, aside for developing tests to diagnose the autism spectrum in the elderly, there is also a need to develop cognitive and behavioral assessment tools for elderly people who are on the autism spectrum.

### Future Directions Despite the small amount of literature about elderly people on the autism spectrum systemati-cally increasing each year, there are still many areas of research to be explored (Bennett 2016; Happé and Charlton 2012; Hategan et al. 2017; Totsika et al. 2010). Bennett (2016) proposed that the impact of nursing home care programs on elderly people on the autism spectrum is an area yet to be researched. In addition, Happé and Charlton (2012) explained that social isolation

area yet to be researched. In addition, Happé and Charlton (2012) explained that social isolation often has a detrimental impact on elderly people not on the autism spectrum. However, it is unknown if seniors on the autism spectrum who engage in solitary hobbies and interests, which they find enjoyable and motivating, can somehow shield themselves from the negative impacts of social isolation. Michael, a person on the autism spectrum, has also voiced views about the impor-tance of researching

a person on the autism spectrum, has also voiced views about the impor-tance of researching elderly people on the autism spectrum (Michael 2016). According to Michael (2016), very little is known about how elderly people on the autism spectrum manage medical conditions which occur during middle or older age, such as arthritis, menopause, type 2 diabetes, and some types of cancer. Similarly, Kats et al. (2013) published a study about clinical problems which older adults with autism and an

Kats et al. (2013) published a study about clinical problems which older adults with autism and an intellectual disability exhibited. They found that there was an urgent need for research about the nature and treatment of behavioral problems in elderly on the autism spectrum. Finally, Perkins and Berkman’s (2012) article showed that people on the autism spectrum have a lower life expec-tancy than those not on the autism spectrum. However, it remains unknown why there is a life expectancy

than those not on the autism spectrum. However, it remains unknown why there is a life expectancy discrepancy.

While increasing our knowledge and under-standing about elderly people on the autism spec-trum is a sensible goal, it cannot, however, be perused without support. Researchers may also struggle to work with elderly adults on the autism spectrum to gain an insight into their lived experience which may impact on their willingness to research in this area. Communication and emotional difficulties can be exacerbated in old age, and there has been little impetus to look at the well-being or economic

be exacerbated in old age, and there has been little impetus to look at the well-being or economic costs of this growing population so far. Piven and Rabins (2011) explained that a pro-longed, integrated, and multipronged approach is required to study seniors on the autism spectrum from a psychological, sociological, and economic perspective. Piven and Rabins (2011) also pro-pose that clinical and research training programs should develop ways to attract and retain early career researchers,

and research training programs should develop ways to attract and retain early career researchers, from a diverse range of disciplines, to study elderly people on the autism spectrum. Similarly, Bennett (2016) suggested that governments should increase funding for projects which can evaluate healthcare systems and services for seniors on the autism spectrum. Support services which are effective will be of benefit to both elderly on the autism spectrum and the wider community in terms of

will be of benefit to both elderly on the autism spectrum and the wider community in terms of improving social outcomes and increasing economic efficiency.

Although there have been many recent developments in the study of elderly on the autism spectrum (Wise et al. 2017), there remains many areas where additional research can be conducted (Amanullah and Rajeh 2019). For example, despite literature showing that the elderly are often finan-cially (Wajnberg et al. 2020) and physically abused (Yon et al. 2020), there is a dearth of literature about these topics for elderly on the autism spec-trum. In the future, researchers should explore if senior

topics for elderly on the autism spec-trum. In the future, researchers should explore if senior citizens on the autism spectrum encounter greater rates of elder abuse than those who are not on the autism spectrum. They might possibly expe-rience greater rates of elder abuse since their social difficulties might leave them with greater vulnera-bilities (Flynn and Healy 2012). As Bennett (2016) has explained, most of the children currently living with an autism spectrum diagnosis, at current the

explained, most of the children currently living with an autism spectrum diagnosis, at current the focus of research, will inevitably become elderly. If the amount of research about elderly people on the autism spec-trum does not increase, then

more reluctant to cover ABA and other treatment modalities for ASD. In 2003, the Centers for Medicare and Medicaid Services issued a directive that characterized ABA as habilitative rather than rehabilitative and, thus, not mandatory coverage. In response, many state Medicaid agencies have ceased providing reimbursement for ABA (Mauch et al. 2011).

### Medicaid “Waiver” Eligibility All 49 states, the District of Columbia, and Arizona also participate in the Medicaid waiver program. Under these programs, parental financial resource limitations are “waived” for certain services for people under the age of 21 with developmental disabilities or long-term illnesses. These waiver programs cover home- and community-based services (HCBS). A person qualifies for HCBS services if he or she otherwise “would require the level of care provided in a

qualifies for HCBS services if he or she otherwise “would require the level of care provided in a hospital or a nursing facility or intermediate care facility for the mentally retarded” (42 U.S.C. § 1396n(c)). Thirty states have ASD-specific waiver programs that delineate the specific services (Autism NOW). Connecticut’s waiver, for example, covers “residential habilitation, personal supports, respite, clinical behavioral supports, supported employment, job coaching, community transition services,

clinical behavioral supports, supported employment, job coaching, community transition services, life skills coaching, community transition services or short term crisis stabili-zation to remain in their own home, family home or other community home.”

### Patient Protection and Accountable Care Act (PPACA) By 2014, the PPACA, which congress enacted in 2010, will expand the Medicaid program to cover nearly all people with incomes up to 133% of the federal poverty level. The PPACA will also preclude Medicaid from considering in an eligibility determination resources other than income.
 ### Disability Benefits The Federal Social Security Program offers two types of disability benefits for which children with ASD may qualify.

### Supplemental Security Income (SSI) The SSI program provides monthly payments to children from birth to age 18. Children whose parents’ income and other financial resources are within the statutory limits are eligible for benefits if they are not “engaged in substantial gainful activity” and are diagnosed with an impairment that meets SSI’s disability definition for children. Listed impairments include “mental disorders,” which encompasses ASD.

At SSI’s enactment in 1973, the Social Security Administration (SSA) required for eligibility for benefits that a child’s impairment be “comparable in severity” to an impairment that would qualify an adult for benefits. In 1996, congress modified the standard by enacting the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRA). This Act replaced the “comparable severity” standard with a test to determine whether a child suffers a “marked and severe functional limitation.”

with a test to determine whether a child suffers a “marked and severe functional limitation.” Eligibility for benefits requires two findings. First, the child’s impairment must be “medically determinable.” Second, the impairment must “meet, medically equal, or functionally equal” a listed impairment (20 CFR §416.92 and §416.926a). SSA regulations establish six “domains” to determine functional equivalence to a listed impairment: “acquiring and using information,” “attending and completing tasks,”

to a listed impairment: “acquiring and using information,” “attending and completing tasks,” “interacting and relating with others,” “moving about and manipulating objects,” “caring for yourself,” and “health and physical well-being.” A child must exhibit a “marked” limitation in at least two of these categories or an “extreme” limitation in one. Factors relevant to these determinations include “the child’s age; the effects of treatment and/or medication; the effect of structured settings; the

child’s age; the effects of treatment and/or medication; the effect of structured settings; the need for assistive devices or adaptations; school functioning, including attendance; time spent in therapy; the effects of chronic illness; and the combined effects of multiple impairments.” An “extreme” limitation exists when the impairment or impairments “very seriously” interfere with the ability to initiate, sustain, or complete activities independently. This status is consistent with a score

to initiate, sustain, or complete activities independently. This status is consistent with a score three standard deviations below the mean on an applicable standardized test. A “marked” limitation exists when the impairment or impairments “seriously” interfere with those same skills. This status is consistent with a score of at least two but fewer than three standard deviations below the mean on an applicable standardized test.

The first step for determining eligibility for SSI benefits based on ASD, the “medically determinable” inquiry, requires a finding of deficiencies in “reciprocal social interaction and in verbal and nonverbal communication and imaginative activity, and a markedly restricted repertoire of activities and interests” (Ruskell). The second step typically finds “functional equivalence” to the “mental disorders” listing and resolves not on a finding of “extreme” limitation in a single domain but on a

disorders” listing and resolves not on a finding of “extreme” limitation in a single domain but on a “marked” limitation in two domains, most commonly in “attending and completing tasks,” “interacting and relating with others,” “caring for yourself,” and “health and physical well-being.” Finally, the ASD limitation must have existed for at least 12 months.

### Social Security Disability Insurance (SSDI) SSDI provides benefits to adults who have a dis-ability that began before they reached the age of 22 years. Because they are based on the Social Security earning record of the beneficiary’s parents, the social Security Administration considers SSDI to be a “child’s” benefit. A disabled adult is entitled to SSDI benefits if one of his or her parents is currently receiving Social Security retirement or disability benefits or died after working long

is currently receiving Social Security retirement or disability benefits or died after working long enough to qualify for some form of Social Security benefit. In addition, a “child” is eligible for SSDI benefits if he or she received dependent benefits on a parent’s Social Security earnings record prior to reaching the age of 18. SSDI eligibility differs from SSI eligibility in that the recipient must meet the impairment definition for adults. The adult disability impairments include “autistic

must meet the impairment definition for adults. The adult disability impairments include “autistic disorder and other pervasive developmental disorders.” Finally the “child” must not be engaged any substantial work.

### Education: The Individuals with Disabilities Education Act (IDEA) IDEA is a federal law that mandates the availabil-ity of a Free Appropriate Public Education (FAPE) for all eligible children with disabilities. IDEA defines “disability” as a person “(1) with mental retardation, hearing impairments . . . speech or language impairments, visual impair-ments . . . serious emotional disturbance . . . orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific

. . . orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities . . . (2) who needs special education and related services because of his or her disability or disabilities” (IDEA § 802, emphasis supplied). Thus, children with ASD are eligible for IDEA-related services. IDEA’s regulations define autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before

affecting verbal and nonverbal communication and social interaction, generally evident before age three that adversely affects a child’s educational perfor-mance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to envi-ronmental change or change in daily routines, and unusual responses to sensory experiences.” A child with ASD is not eligible for IDEA-related services if the “child’s educational perfor-mance is

with ASD is not eligible for IDEA-related services if the “child’s educational perfor-mance is adversely affected primarily because the child has an emotional disturbance.” An “emo-tional disturbance” is “a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child’s educational performance”:

*   “An inability to learn that cannot be explained by intellectual, sensory, or health factors”
*   “An inability to build or maintain satisfactory interpersonal relationships with peers and teachers”
*   “Inappropriate types of behavior or feelings under normal circumstances” *   “A general pervasive mood of unhappiness or depression” *   “A tendency to develop physical symptoms or fears associated with personal or school problems”

IDEA’s regulations also classify schizophrenia as an emotional disturbance. For those children diagnosed with ASD and not an emotional disturbance, Part C of the IDEA, Infants and Toddlers with Disabilities, pro-vides for developmental services for children from birth to 3 years of age. Part B, Assistance for Education of All Children with Disabilities, mandates educational services for children from ages 3 to 21. The educational requirements of Part B include an individualized education

from ages 3 to 21. The educational requirements of Part B include an individualized education program (IEP) for each child and demand the placement of each child in the least restrictive environment (LRE) possible.

An “appropriate” education must address a child’s specific educational needs. Determining what is appropriate entails several steps. The responsible state actor must conduct an individualized assessment to ascertain a student’s strengths and weaknesses. Next, an IEP team, comprising representative of the school district, a teacher, the child’s parents, and, if appropriate, the child, must identify appropriate goals and objectives for the student and construct an IEP designed to aid the student

appropriate goals and objectives for the student and construct an IEP designed to aid the student in meeting the goals and objectives. Finally, the IEP team is charged with identifying the aids and services necessary for the child to succeed in the IEP. These services consist of “transportation and such developmental, corrective, and other sup-portive services as are required to assist a child with a disability to benefit from special educa-tion.” Specifically, they may include:

*   Audiology *   Counseling services *   Early identification and assessment of disabil-ities in children *   Medical services for diagnosis or evaluation *   Occupational therapy *   Parent counseling and training *   Physical therapy *   Psychological services *   Recreation *   Rehabilitation counseling *   School health services *   Social work services *   Speech pathology *   Transportation  An IEP must include:  *   “A statement of the child’s present levels of academic achievement and

An IEP must include:  *   “A statement of the child’s present levels of academic achievement and functional”

*   “A statement of measurable annual goals including academic and functional” *   “A description of how the child’s progress toward meeting the annual goals will be measured”
*   “A statement of the special education and related services and supplementary aids and services . . . to be provided”
*   “An explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class and in extracurric-ular and other nonacademic activities”

*   “A statement of any individual appropriate accommodations that are necessary to measure the academic achievement and functional per-formance of the child”
*   “The projected date for the beginning of the services and program modifications and the anticipated frequency, location, and duration of those services and modifications”
*   “Beginning not later than the first IEP to be in effect when the child is 16 and updated annu-ally thereafter: appropriate measurable post-secondary goals”

IDEA conditions state receipt of federal funding on meeting its minimum requirements. States may not provide fewer services but may provide greater services. The needs of children vary, and, as a result, children with ASD will be eligible for varying IEPs and services. Their needs and the services to which they are entitled will also likely change over time.

### Antidiscrimination: The Americans with Disabilities Act (ADA) The ADA prohibits discrimination on the basis of disability in employment, state and local govern-mental services, public accommodations, trans-portation, and telecommunications. A person is “disabled” if he or she has a physical or mental impairment that substantially limits one or more major life activities, has a history or record of impairment, or is perceived by others as having an impairment. The ADA does not enumerate the

of impairment, or is perceived by others as having an impairment. The ADA does not enumerate the impairments that are “substantially limiting,” leaving that ques-tion to the regulators and courts. In the decade and a half following the ADA’s enactment in 1990, the federal courts, including the United States Supreme Court, issued a number of decisions construing the statutory phrase very narrowly. This resulted in the denial of many ADA claims, including claims of those with ASD. In response,

This resulted in the denial of many ADA claims, including claims of those with ASD. In response, congress enacted the Americans with Disabilities Act Amendments Act of 2008 (ADAAA). The ADAAA’s central feature was a command that “the definition of disability in this Act shall be construed in favor of broad coverage of individuals under this Act, to the maximum extent permitted under the terms of the Act.”

Specifically, the ADAAA expanded the definition of “major life activities” by articulating a non-exhaustive list of the activities: “caring for oneself, performing manual tasks, seeing, hear-ing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.” In addition, the Act included “major bodily functions” within “major life activities” and presented a non-exhaustive list of these func-tions: “functions

within “major life activities” and presented a non-exhaustive list of these func-tions: “functions of the immune system, normal cell growth, digestive, bowel, bladder, neurologi-cal, brain, respiratory, circulatory, endocrine, and reproductive functions.” The ADAAA also mandated that, with the exception of eyeglasses and contact lenses, the determination that impairment substantially limits a major life activity “be made without regard to the ameliorative effects of mitigating measures” such as

life activity “be made without regard to the ameliorative effects of mitigating measures” such as medication and other “assistive technology.” Most importantly for people with ASD, the determination must be made without regard to “learned behavioral or adaptive neuro-logical modifications.” A temporary impairment, or one that is “episodic or in remission” qualifies as a disability even when inactive “if it would substantially limit a major life activity when active.” Examples would include

“if it would substantially limit a major life activity when active.” Examples would include posttraumatic stress disorder, epilepsy, or cancer.

On May 24, 2011, new regulations designed to implement the ADAAA and issued by the Equal Employment Opportunity Commission (EEOC), the agency charged with enforcing the ADA, went into effect. Echoing the ADAAA, the regulations provide that “[t]he definition of disability . . . shall be construed broadly, to the maximum extent per-mitted by the terms of the ADA.” More impor-tantly, the regulations announce that the ADAAA shifts the focus of an ADA claim from whether a disability exists to

announce that the ADAAA shifts the focus of an ADA claim from whether a disability exists to “whether discrimination occurred.” Furthermore, the regulations provide that the question whether an individual is “sub-stantially limited” in a major life activity “should not demand extensive analysis” and “usually will not require scientific, medical, or statistical analysis.” Most importantly for those with ASD, the reg-ulations provide the first explicit recognition that autism constitutes an

those with ASD, the reg-ulations provide the first explicit recognition that autism constitutes an ADA-recognized impair-ment. Indeed, Section 1630.2(j) (3) (iii) provides that “in virtually all cases,” a number of condi-tions, including autism, meet the definition of disability. According to the EEOC, “autism sub-stantially limits brain function” and thus “will, at a minimum, substantially limit . . . major life activities.”

As a result of the ADAAA and its accompanying regulations, those diagnosed with ASD are assured eligibility for remedies should they expe-rience discrimination in employment, govern-mental services, public transportation, public accommodations, or in telecommunications. In the employment context, the ADA prohibits dis-crimination in recruitment, hiring, promotions, training, pay, social activities, and other employment-related privileges. Governmental services include public education,

and other employment-related privileges. Governmental services include public education, employment, transportation, recreation, health care, social ser-vices, courts, voting, and town meetings. Public transportation includes city busses, subways, trains, and the like. Public accommodations include businesses and nonprofit service pro-viders that are open to the public. These enter-prises include privately operated educational facilities, transportation services, and commercial facilities such

privately operated educational facilities, transportation services, and commercial facilities such as restaurants, retail stores, hotels, movie theaters, private schools, convention cen-ters, doctors’ offices, homeless shelters, transpor-tation depots, zoos, funeral homes, day care centers, and recreation facilities including sports stadiums and fitness clubs.

Accommodations accorded those with ASD vary according to a person’s impairments and the context. In the educational context (also covered by the Individuals with Disabilities Education Act (IDEA)), accommodations include special educa-tion teachers, teacher aides, more frequent feed-back from teachers, and help with learning strategies or study skills. Other accommodations include the use of technological aids such as cal-culators, computer software, and audiobooks. In the employment context,

aids such as cal-culators, computer software, and audiobooks. In the employment context, ASD-related accommodations include the articulation of clear job expectations, mandates that superiors and col-leagues communicate in a direct manner, minimi-zation of multitask assignments, and the use of instructional visuals.

### Future Directions Eligibility for private and public health insurance will be subject in the future to the fortunes of the Patient Protection and Affordable Care Act (PPACA). Eligibility for social security, educa-tional, and antidiscrimination benefits will be sub-ject to the priorities and directions of federal and state legislatures.

### ELM Scale-2 Early Language Milestone Scale  ### ELS Checklist Test of Early Language Skill  ### ELS Test of Early Language Skill  ### Emancipatory Autism Studies Critical Autism Studies  ### Elopement #### Definition Elopement behavior, sometimes termed “wander-ing,” is defined as the leaving of a supervised, safe space by a dependent person, such as a person with Autism Spectrum Disorder (ASD). It refers to incidents lasting longer than a brief period of running away, which is

Disorder (ASD). It refers to incidents lasting longer than a brief period of running away, which is developmentally normal in toddlers but is rare in the typically developing population, particularly in those over 5 years of age (Anderson et al. 2012).

#### Historical Background Historically, elopement was grouped with other “challenging behaviors” commonly encountered among individuals with ASD and/or Intellectual Disability (ID), such as aggressive and disruptive behavior, and received little specific attention (Dekker et al. 2002; Doehring et al. 2014; Matson and Nebel-Schwalm 2007; Matson and Rivet 2008; Murphy et al. 2005). The majority of research specifically focused on elopement behav-ior has been conducted on populations of

of research specifically focused on elopement behav-ior has been conducted on populations of individ-uals with dementia rather than ASD, potentially limiting applicability of findings to the ASD pop-ulation (Algase et al. 2009; Cipriani et al. 2014; Lai and Arthur 2003). Within ASD-related literature, the small body of published studies on elopement consist largely of case reports or small case series reporting on efforts to manage the problem using behavior analytic approaches, particularly

series reporting on efforts to manage the problem using behavior analytic approaches, particularly Applied Behav-ioral Analysis (ABA), and the use of related inter-ventions such as functional communication training, differential reinforcement of other behaviors, and noncontingent reinforcement (Call et al. 2011; Falcomata et al. 2010; Lang et al. 2010; Perrin et al. 2008; Piazza et al. 1997; Stevenson et al. 2016; Tarbox et al. 2003).

#### Current Knowledge Interest in the problem of elopement has increased in the last decade as a result of increasing aware-ness of its potentially deadly consequences for individuals with ASD. High profile incidents including drownings and traffic accidents pro-mpted calls for more research focused on under-standing and preventing elopement (The Autism Wandering Awareness Alerts Response and Edu-cation (AWAARE) Collaboration; McIlwain and Fournier 2012). In parallel, research on the causes of

(AWAARE) Collaboration; McIlwain and Fournier 2012). In parallel, research on the causes of elevated mortality among individuals with ASD (Gillberg et al. 2010; Guan and Li 2017; Mouridsen 2013; Schendel et al. 2016), including one study documenting a 40-fold increased risk of drowning for these individuals, (Guan and Li 2017), pointed toward elopement as a potentially important modifiable risk factor for individuals with ASD. Increased awareness of the risks of elopement and advocacy by parents

for individuals with ASD. Increased awareness of the risks of elopement and advocacy by parents and ASD organizations (McIlwain and Fournier 2010) led to the first large-scale study of elopement among individuals with ASD. Surveying over 1200 caregivers of children with ASD recruited via the Interactive Autism Network (IAN), an online research data-base and autism registry, Anderson and colleagues (2012) reported that 49% of children with ASD over the age of 4 had reported attempts of elope-ment

(2012) reported that 49% of children with ASD over the age of 4 had reported attempts of elope-ment at least once after the age of 4. Rates in children with ASD were dramatically higher than in their unaffected siblings, particularly among older children. Among survey respon-dents, 26% reported their children had been miss-ing long enough to cause concern, with 24% of them reported in danger of drowning and 65% in danger of a traffic injury. Elopement risk was correlated with greater ASD

of drowning and 65% in danger of a traffic injury. Elopement risk was correlated with greater ASD severity, with an increased risk of 9% on average for each 10-point increase in Social Responsiveness Scale (SRS) T score. Families reported high levels of stress and lost opportunities to participate in activ-ities outside the home due to elopement, yet only 50% of families reported receiving any advice or guidance on addressing the behavior. Unfortunately, as noted by the authors, the study was

or guidance on addressing the behavior. Unfortunately, as noted by the authors, the study was not able to provide an estimate on the number of fatalities specifically due to elopement due to inclusion of only living children with ASD.

Subsequent to the study of Anderson and col-leagues, two other large-scale epidemiological studies published in 2016 provided population-based estimates of elopement prevalence and cor-relates of the behavior. Utilizing the Centers for Disease Control (CDC) “Pathways” Survey data, consisting of telephone survey responses from over 4000 parents of children with a developmen-tal disability, including ASD and Intellectual Dis-ability (ID) or Developmental Delay (DD), Rice and colleagues (2016)

ASD and Intellectual Dis-ability (ID) or Developmental Delay (DD), Rice and colleagues (2016) reported on rates of elope-ment behavior occurring within the year prior to parental survey participation, with the highest rate (37.7%) seen among children with ASD and ID, followed by children with ASD but not ID (32.7%) and those with only ID (23.7%). Rice and colleagues also reported an elevated risk of elopement in male children with ASD versus female children with ASD (OR 2.79, CI 1.03–7.57; P <

of elopement in male children with ASD versus female children with ASD (OR 2.79, CI 1.03–7.57; P < 0.05). Children with ASD and ID had the highest use of prevention measures for elopement (40.8%), compared with approxi-mately 1 in 4 children with ASD without ID, or ID without ASD. However, Rice and colleagues noted that despite the high rate of use of preven-tion measures, details on the use of specific mea-sures and their effectiveness were lacking, as was information on the circumstances and

specific mea-sures and their effectiveness were lacking, as was information on the circumstances and motivations for elopement in different individuals with ASD. Analyzing the same CDC “Pathways” dataset, Kiely and colleagues (2016) reported that 26.7% of children with ASD, ID/Developmental Disabil-ity (DD), or both had eloped within the previous year, with the highest rates among children with ASD and ID (34.6%), followed by ASD only (32.7%) and ID/DD only (22.7%), consistent with the analysis

and ID (34.6%), followed by ASD only (32.7%) and ID/DD only (22.7%), consistent with the analysis of Rice and colleagues. Kiely and colleagues similarly found that greater ASD severity, as indicated by the Children’s Social Behavior Questionnaire (CSBQ), was correlated with elopement behavior, consistent with the find-ings of Anderson and colleagues (2012).

Despite increasing awareness of the prevalence of EB and associated risks, little evidence has been available to guide families and caregivers in managing the behavior (McIlwain and Fournier 2010). Responding to this knowledge gap, advo-cacy organizations have provided resources for caregivers such as the National Autism Associa-tion’s “Big Red Safety Toolkit” (National Autism Association 2014), which includes recommenda-tions for preventative interventions such as door alarms, shoe ID tags,

which includes recommenda-tions for preventative interventions such as door alarms, shoe ID tags, and visual prompts, as well as a recommendation for swimming lessons in order to reduce drowning risk. At the same time, the use of tracking technol-ogies such as GPS-enabled bracelets has contin-ued to receive interest as a means of alerting caregivers when individuals with ASD elope (Hayward et al. 2016). In particular, following the tragic 2013 death of Avonte Oquendo during an elopement

et al. 2016). In particular, following the tragic 2013 death of Avonte Oquendo during an elopement incident, a 14-year-old boy from Queens, New York, with ASD, New York Senator Charles Schumer pledged federal funding for tracking devices, reflecting hope that widespread use of these devices could be an effective means of locating missing children. Despite this interest, adoption of tracking devices has been limited thus far, as reflected by Rice and colleagues who found only about 3% of parents

has been limited thus far, as reflected by Rice and colleagues who found only about 3% of parents using them (Rice et al. 2016), potentially due to associated costs as well as limited evidence on their effectiveness (Hayward et al. 2016). Research into behavioral treatments for elope-ment also continues to be an area of active inves-tigation, (Boyle et al. 2019; Lehardy et al. 2013) with one recent study reporting a substantial reduction in elopement occurrences (Cohen’s d ¼ 1.18) in a sample of

study reporting a substantial reduction in elopement occurrences (Cohen’s d ¼ 1.18) in a sample of 11 subjects treated at an intensive day treatment clinic for an average of 37 sessions (Call et al. 2017). Overall, however, as reported in a 2017 review of functional analysis and function-based treatments for elopement by Boyle and colleagues (2017), the body of evi-dence supporting behavioral therapies for elope-ment is limited, with Boyle and colleagues finding only 12 studies totaling 20

therapies for elope-ment is limited, with Boyle and colleagues finding only 12 studies totaling 20 subjects that met criteria for review and noting that “conclusions regarding effectiveness of treatments should be drawn tenuously.” Boyle and colleagues noted inherent challenges in the study of elopement from a functional behavioral perspective, in par-ticular that the consequences of the behavior are confounded by the requirement that the clinician retrieves the child before harm occurs and that

confounded by the requirement that the clinician retrieves the child before harm occurs and that the behavior itself may be infrequent and therefore unlikely to occur during the period of observation.

To address the knowledge gap in real-world effectiveness of interventions for elopement behavior such as those noted above, Andersen and colleagues (2019) reported on caregiver responses to elopement and elopement patterns, using a sample of over 500 caregivers of children with ASD recruited via IAN. Most respondents reported using multiple types of interventions to prevent elopement, finding this strategy in general to be effective but burdensome. Tracking devices were used infrequently and

strategy in general to be effective but burdensome. Tracking devices were used infrequently and not rated as highly effective, whereas some environmental interven-tions such as fencing and window locks were rated as highly effective. The use of behavioral specialists to address the behavior was also com-mon and rated as effective. Given high rates of off-label psychotropic medication administration reported among individuals with ASD with chal-lenging behaviors (Matson and Neal 2009), the

reported among individuals with ASD with chal-lenging behaviors (Matson and Neal 2009), the frequency and effectiveness of medications used for elopement was also surveyed. Although off-label use of psychotropic medications to reduce elopement was reported by 16% of respondents, most commonly antipsychotics (29%), no medi-cations were rated as effective in preventing the behavior, and most were associated with high rates of side effects. In reporting on elopement patterns in this study, the

associated with high rates of side effects. In reporting on elopement patterns in this study, the most common locations for the behav-ior were the home (71%) and parks or outdoor spaces (49%). The most commonly associated motivations included anxious situations (43%) or running or exploring for enjoyment (41%). Simi-lar to prior reports, the frequency of elopement behavior was associated with greater levels of ASD severity, as indicated by higher SRS scores, comorbid ID, Language Disorder (LD),

levels of ASD severity, as indicated by higher SRS scores, comorbid ID, Language Disorder (LD), and other challenging behaviors including aggression, self-injury, and disruptive behavior. Interestingly, chil-dren with ASD and comorbid ADHD were found to be significantly more likely to elope due to having “too much energy” (P < 0.001), whereas those with comorbid Anxiety Disorder, NOS were significantly more likely to elope from “stressful” environments (P < 0.001), supporting the hypoth-esis that

more likely to elope from “stressful” environments (P < 0.001), supporting the hypoth-esis that motivations underlying elopement behavior vary and that different approaches to preventing the behavior may be required depending on the individual.

#### Future Directions High priorities for preventing elopement and related injury or death include improving under-standing of its causes and the identification of effective measures to prevent the behavior. Significant advances have been made in the last decade in our understanding elopement’s preva-lence and correlates, while evidence on the rela-tive effectiveness of different interventions for elopement remains significantly limited. Avail-able research suggests that caregivers have

for elopement remains significantly limited. Avail-able research suggests that caregivers have responded to this lack of evidence by employing whatever measures are available to them to pre-vent their loved ones with ASD from suffering elopement-related death or injury, but that these efforts come at a substantial cost in terms of daily burden and stress. Going forward, more effective tools to identify high risk individuals and prevent or respond to elopement among individuals with ASD are

identify high risk individuals and prevent or respond to elopement among individuals with ASD are greatly needed. In addition, efforts to overcome barriers to implementing interventions that have some evidence of effectiveness such as fencing and window locks, may reduce the risks of injury and death among this population whose families already shoulder significant economic burdens associated with the disorder (Lavelle et al. 2014). Thankfully, with the addition of an ICD billing code for

with the disorder (Lavelle et al. 2014). Thankfully, with the addition of an ICD billing code for “wandering in diseases classified elsewhere” (Z91.83), reimbursement for elope-ment behavior in individuals with ASD, ID, and dementia may be possible, offering hope that fam-ilies will be able to meet some of the expense associated with preventing and treating the behav-ior. Improved awareness of the prevalence and risks of elopement on the part of clinicians will also be essential in recognizing

prevalence and risks of elopement on the part of clinicians will also be essential in recognizing the behavior and offering families guidance and treatment strategies. At the public health level, efforts to mobilize existing resources and develop new strategies to protect children who elope will continue to be high priorities. Community agencies such as local police departments and school districts should continue to work with families to identify individuals at high risk for elopement, develop

should continue to work with families to identify individuals at high risk for elopement, develop preventative strategies, and respond appropriately when elopement occurs. Finally, continued efforts by organizations such as the National Autism Association (2014) and the National Center for Missing and Exploited Children (2019) to both provide families with resources on managing elopement and advocate for more research on this important clinical problem will be essential to creating a future

for more research on this important clinical problem will be essential to creating a future where these vulnerable individuals are safe from harm.

### Emancipatory Autism Studies Critical Autism Studies  ### Embedded Figures Test (EFT) #### Description The Embedded Figures Test (EFT) was designed by Witkin in 1971 to assess his concept of “field dependence – independence” (e.g., Witkin and Goodenough 1981). Good performance on the EFT was taken as a marker of field independence, the ability to disembed information from context or surrounding gestalt. The test requires the par-ticipant to spot a simple form within a more com-plex figure; the

gestalt. The test requires the par-ticipant to spot a simple form within a more com-plex figure; the color and form of the latter create a gestalt within which the part is hidden. In the Children’s EFT, the complex figure is also meaningful (e.g., a pram, within which the trian-gle to be found is hidden in the hood). Group-administered and short versions are also available. People with ASD are often extremely good at the EFT, as first demonstrated by Shah and Frith (1983). Fast and accurate

often extremely good at the EFT, as first demonstrated by Shah and Frith (1983). Fast and accurate performance on this test is thought to reflect the ability to see parts within wholes, to ignore the distracting effect of the gestalt, and to focus on details. Indeed, superior performance on the EFT (compared to age- and IQ-matched comparison group) was one of the first demonstrations of so-called weak central coherence in ASD and remains one of the best replicated findings (see Happé and Frith 2006

central coherence in ASD and remains one of the best replicated findings (see Happé and Frith 2006 for review).

#### Historical Background Witkin (1916–1979) was a founder of the notion of cognitive and learning styles. He proposed the idea that personality could be measured in part by how people perceived their environment. In par-ticular, he attempted to create objective tests (in contrast to questionnaire methods), such as the Rod-and-Frame test, to measure individual differences in reliance on external versus internal frames of reference. The Embedded Figures Test was created by Witkin as a more

versus internal frames of reference. The Embedded Figures Test was created by Witkin as a more portable and convenient test designed to measure these same facets of field dependence or independence. Shah and Frith (1983) were the first to use the Embedded Figures Test with individuals with autism, showing superiority compared to matched comparison groups. This was one of the key find-ings that led Uta Frith to propose her theory of “weak central coherence” in autism.

### Emergency Department Utilization and Autism #### Definition People with autism spectrum disorder (ASD) (American Psychiatric Association 2000) are susceptive to big emotional swings, and some-times violent actions toward themselves and those around them, leading to frequent crises. Those with mental breakdowns and/or with acute, severe injuries often were often rushed to emergency departments (ED) for immediate treat-ments. Researchers have found a steady increase in ED visits by children

(ED) for immediate treat-ments. Researchers have found a steady increase in ED visits by children and adolescents with ASD in the 2000s for both non-psychiatric and psychiatric referrals (McCraig and Burt 2005; Mahajan et al. 2009). This trend has also been documented more recently (Kalb et al. 2018; Liu et al. 2017, 2019) for adolescents and young adults with ASD who had higher documented ED visits compared to their same-age peers with-out ASD. Obsession with strict routines, stereo-typy,

visits compared to their same-age peers with-out ASD. Obsession with strict routines, stereo-typy, self-injurious behavior (SIB) (Sterling et al. 2005), and plus deficits in social communication make ASD patients prone to emotional instability ever since very early childhood. Physical matura-tion and the accompanying hormonal surge, among other triggers of various nature, further amplify the adverse consequence from those out-bursts among young ASD patients. In addition, other mental and

adverse consequence from those out-bursts among young ASD patients. In addition, other mental and physical health comorbidities coupled with core ASD deficits which create bar-riers to accessing health care services for individ-uals with ASD often make those with ASD prone to acute adverse health events requiring treatment in the emergency department (ED) (Liu et al. 2019). These mental and physical comorbidities also lead to high rates of healthcare utilization and contribute to a growing cost

comorbidities also lead to high rates of healthcare utilization and contribute to a growing cost for healthcare needs for children and adolescents with ASD. In fact, overall cost of medical care is greater for children with ASD compared to children without ASD (Croen et al. 2006; Leslie and Martin 2007; Peacock et al. 2012).

#### Historical Background Non-psychiatric and psychiatric referrals have been increasing at a higher rate when compared to individuals without ASD (McCraig and Burt 2005; Gurney et al. 2006; Mahajan et al. 2009; Liu et al. 2017; Kalb et al. 2018). Deavenport-Saman et al. (2016) found that children and adolescents with ASD had 0.26 more documented visits to the ED when compared to individuals without ASD and that older children with ASD (i.e., school-age compared to preschool-age) were

without ASD and that older children with ASD (i.e., school-age compared to preschool-age) were utilizing the ED more. A recent examination of ED utilization in adults with ASD found a similar trend in high utilization of the ED (Nicoliadis et al. 2013). Middle to late adolescence and residing in rural areas appeared to reflect higher rates of ED utili-zation in comparison to early adolescence and residing in urban areas. In addition, higher ED utilization was observed in females as compared to

residing in urban areas. In addition, higher ED utilization was observed in females as compared to males with ASD, as well as a significant increase in behavioral health visits in the ED over time. Adolescents with ASD do not appear to be adequately supported through the transition to adulthood as they experience more social and communication difficulties often while dealing with new-onset mental health conditions. This may be particularly true for older youth, those residing in rural settings,

health conditions. This may be particularly true for older youth, those residing in rural settings, and for adolescent females with ASD.

#### Current Knowledge ##### Population Vulnerability ASD patients typically have deficits in social communication, sensory sensitivities, stereotypi-cal and self-injurious behaviors (SIB), as well as other well-known ASD signature behaviors. These ASD hallmark characteristics contribute to emotional dysregulation for ASD patients starting in early childhood (Samson et al. 2014) and con-sequently subject them more susceptible to emotional breakdown and physical injuries that often need

subject them more susceptible to emotional breakdown and physical injuries that often need emergency medical attentions, such as visits to emergency departments. Stereotypy refers to repetitive but typically not goal-directed behaviors (Sterling et al. 2005). Some stereotypi-cal behaviors even not appear to be violent, are often associated with SIB. For example, repara-tive licking often cause skin damages. Young ASD children seldom cause server bodily-damage to themselves. In contrast, it was

damages. Young ASD children seldom cause server bodily-damage to themselves. In contrast, it was often acute flar-ing of lingering medical problems that leads them to ED. There have been reports that those with have lingering comorbid physical health concerns, such as epilepsy (Tuchman and Cuccaro 2011; Berg and Plioplys 2012) and gastrointestinal (GI) illnesses (Chaidez et al. 2014; Dinan and Cryan 2017) which often lead to increased ED utilization. In addition, medical conditions such as

Cryan 2017) which often lead to increased ED utilization. In addition, medical conditions such as respiratory problems (Kohane et al. 2012; Ming et al. 2016) and other miscellaneous injuries (Jain et al. 2014; Summers et al. 2017) have high prev-alence of ED utilization among people diagnosed with ASD. A majority of children and adolescents with ASD are also diagnosed with multiple comorbid diagnoses, including anxiety, depres-sion, and disruptive behavior disorders (Gotham et al. 2015;

diagnoses, including anxiety, depres-sion, and disruptive behavior disorders (Gotham et al. 2015; Gordon-Lipkin et al. 2018). For some children with ASD, physical maturation and the accompanying hormonal changes in adolescence, among other stressors associated with adolescence, amplify the adverse consequence from depleted coping abilities among young ASD patients as they grow to face up the rules, disciplines, as well as social pressures from peers as well as teachers and school administrators

disciplines, as well as social pressures from peers as well as teachers and school administrators at schools, even parents at home. The transition to adolescence is a particularly stressful time for individuals with ASD and their caregivers as social and societal demands increase, physical and sexual maturity advances, and parental emo-tional stress often peaks.

Another vulnerability faced by those with ASD is polypharmacy, generally defined as medica-tions prescribed to individuals which are simulta-neously filled across two or more classes of medications (Spencer et al. 2013). Given that the majority of children and adolescents with ASD present with comorbid mental and physical health issues, it is not uncommon for physicians to prescribe multiple medications both within and across drug classes, even though the majority of this practice is

medications both within and across drug classes, even though the majority of this practice is “off-label.” In particular, pre-scription of psychotropic medications, especially multiple medications often put those with ASD in great danger of having acute adverse events, often leading to visits to the emergency departments. Many of the medical conditions among those with ASD may not require care in the ED if managed properly with adequate and regular access to health care services. As with

in the ED if managed properly with adequate and regular access to health care services. As with psychiatric care, there are likely several barriers to routine healthcare, management of chronic health con-cerns, and accessing urgent care for adolescents with ASD. These barriers may include lack of access to health care services, socioeconomic barriers, deficits in communication and social interaction skills, distress or fear responses partic-ularly in novel settings, and sensory sensitivities

skills, distress or fear responses partic-ularly in novel settings, and sensory sensitivities related to the healthcare setting (Gurney et al. 2006). Additionally, families who have children with ASD are also more likely to experience unmet health care needs, more likely to delay or forgo health care, and more likely to report a high dissatisfaction with care (Kogan et al. 2008; Chiri and Warfield 2012). Taken together, these barriers may contribute to a higher utilization of the ED to identify

2012). Taken together, these barriers may contribute to a higher utilization of the ED to identify and manage acute healthcare needs in adolescents with autism.

##### Non-psychiatric and Psychiatric ED Visits There has been a steady increase in utilization of the ED for both non-psychiatric and psychiatric referrals by children and adolescents over time (McCraig and Burt 2005; Mahajan et al. 2009). This trend has also been documented in children and adolescents with ASD and has been found to be increasing at a higher rate when compared to individuals without ASD (Gurney et al. 2006). The most common non-psychiatric problems presenting at ED visits

without ASD (Gurney et al. 2006). The most common non-psychiatric problems presenting at ED visits include epilepsy seizures and/or neurological symptoms (9–15%); gastro-intestinal disturbances (15%) such as nausea, vomiting, diarrhea, abdominal pain, and constipa-tion (Tuchman et al. 2010; Cohen-Silver et al. 2014; Deavenport-Saman et al. 2016); upper respiratory infections (7%) and viral infections (7%); otitis media (5%); and head or dental injuries (7%) (Deavenport-Saman et al. 2016).

(7%); otitis media (5%); and head or dental injuries (7%) (Deavenport-Saman et al. 2016). Epilepsy has been long found to be highly comor-bid with ASD. Studies reported a pooled ASD prevalence of 6.3% among those with epilepsy and prevalence of epilepsy among those with ASD range from 2.7% to 44.4% (Bolton et al. 2011), while the prevalence of epilepsy in the general population is only approximately 0.5–2% (Nguyen and Tellez Zenteno 2009). GI problems has been widely studied and reported in

0.5–2% (Nguyen and Tellez Zenteno 2009). GI problems has been widely studied and reported in association with ASD, despite the fact that a causal link between these two remains to be established (Chaidez et al. 2014; Dinan and Cryan 2017). Nevertheless, the prevalence of var-ious GI issues has been reported ranging any-where from 23% to 70% (Chaidez et al. 2014).

As ASD children grow up, those who visited ED more often involve mental health emergen-cies. While psychiatric-related ED visits have been found to be increasing at a swifter rate than non-psychiatric reasons for referral to the ED (Liu et al. 2017). It is reported that psychiatric-related ED visits among ASD patients have out-paced those of non-ASD population; most recently dur-ing year 2013 with about 20% of all ED visits among ages 12–21 years, ASD patients involve psychiatric/behavior

with about 20% of all ED visits among ages 12–21 years, ASD patients involve psychiatric/behavior health service (Liu et al. 2017). Kalb et al. (2012) found that ED visits for children and adolescents with ASD were more likely to be related to a psychiatric concern then non-psychiatric concern. In regard to common psychiatric reasons for referral to the ED, Iannuzzi et al. (2014) found that as children with ASD entered elementary, school behavioral issues became a common reason for referral to

with ASD entered elementary, school behavioral issues became a common reason for referral to the ED. However, around the time of entry into mid-dle school, in addition to behavioral issues, mood symptoms, self-injurious behavior, and more sig-nificant aggression entered into the top reasons for referral to the ED and remained stable into young adulthood. Wharff et al. (2011) found that chil-dren with developmental disabilities, including ASD, were 2.5 times more likely to utilize the ED while

with developmental disabilities, including ASD, were 2.5 times more likely to utilize the ED while waiting for an opening on a psychiatric inpatient facility. Approximately one-fourth of children and ado-lescents with ASD have been found to make repeated visits to the ED, and of this 25%, half of the individuals had been to the ED in the 2 weeks prior to the current visit (Cohen-Silver et al. 2014). Of the children and adolescents with ASD who present to the ED, almost 20% have been

et al. 2014). Of the children and adolescents with ASD who present to the ED, almost 20% have been subsequently admitted to the hospital compared to a rate of 10% in children and adoles-cents without ASD (Cohen-Silver et al. 2014). Deavenport-Saman et al. (2016) found that chil-dren and adolescents with ASD were less likely to be admitted to the hospital from the ED if they arrived at the ED during weekday daytime or evening hours, were female, were English-speaking, and had no insurance. In

weekday daytime or evening hours, were female, were English-speaking, and had no insurance. In the same sample, being 6 years old or older, being non-Hispanic, and traveling a greater distance to the ED led to high admittance rates.

##### Risk Factor and Predictors of ED Visits A variety of factors, acting independently, or interacting with each other, contribute to the men-tal and/or physical crises among young ASD patients, leading to higher ED utilization. It is known that a wide spectrum of ASD patients may have different comorbid mental illnesses. Kalb et al. (2012) reported that externalizing men-tal health illnesses were associated with ED visits and subsequent hospitalizations. On the other hand, Liu et al. (2017,

associated with ED visits and subsequent hospitalizations. On the other hand, Liu et al. (2017, 2019) found that female adolescents and young adults with more internal-izing comorbid illnesses, such as anxiety disor-ders, mood disorders, and depression, were more likely to visit ED compared to those with comorbid externalizing mental health diagnoses (e.g., ADHD, ODD, psychosis). Females with ASD are more often to have comorbid internaliz-ing disorders but are less likely to be referred to the

are more often to have comorbid internaliz-ing disorders but are less likely to be referred to the specialists for assessment than males ((Rucklidge 2010). However, if left undiagnosed, or undertreated, symptoms of these illnesses may exacerbate to the level of level of crises and med-ical emergencies and ED visits. Entering high school (age 12–14) and exiting high school (age 18–21), times of transition often put tremendous pressure on female adolescents and young adults with ASD because often

often put tremendous pressure on female adolescents and young adults with ASD because often during which when new social relationships are to be established and new skills mastered. They strug-gle with establishing and maintaining appropri-ate peer relationships (Holtmann et al. 2007). This new layer of difficulty is particularly distressing for female adolescents with ASD as they may have had some success with peers when younger due to shared interests which can-not be sustained secondary to

success with peers when younger due to shared interests which can-not be sustained secondary to growing social communication deficits (Van Wijngaarden-Cremers et al. 2014).

Many researchers have proposed that increased ED utilization for children and adolescents with ASD may be related to deficits in first-line, community-based, outpatient care (Green et al. 2001; Leichtman et al. 2001). Caregivers of typi-cally developing children and adolescents who reported that their PCP stresses family cen-teredness, timeliness, and coordinated care have been found to report decreased numbers of visits to the ED (Brousseau et al. 2009). Similarly, care-givers of children and

numbers of visits to the ED (Brousseau et al. 2009). Similarly, care-givers of children and adolescents with ASD report they are more likely to access the ED for healthcare when they perceived their healthcare providers do not listen to their concerns, display cultural insensitivity, do not supply needed infor-mation, and do not involve caregivers in decision-making. Therefore, it is less likely that caregivers of youth with ASD access their PCPs for routine visits that are for minor issues as

that caregivers of youth with ASD access their PCPs for routine visits that are for minor issues as a result of having less assurance for help with acute, emergent, and/or complex behavioral or health issues (Kogan et al. 2008). Finally, those living in rural areas have been found to have less access to regular and specialty medical and mental healthcare and therefore may be more likely to present at the ED for mental healthcare. Approximately

et al. 2000). These findings are consistent with reported theory of mind deficits in ASD that reduce their ability to appreciate or evaluate others’ mental states (Baron-Cohen et al. 1985; see ▶Theory of Mind). Additionally, when talking about their own emotional experiences, children with ASD tend to attribute their emotions to events and actions, whereas typically developing children commonly contextualize their emo-tions within a personal or social perspective (e.g., Losh and Capps 2006;

contextualize their emo-tions within a personal or social perspective (e.g., Losh and Capps 2006; Rieffe et al. 2007). Such group differences in reasoning about emotions raises the question of whether conceptualization of emotions may differ in children with ASD and typically developing children.

Emotional concepts. Data from emotion interviews reveal that emotional concepts may be underdeveloped in children with ASD. In emotion interviews, participants are asked to define named emotions, describe situations that exem-plify those emotions, and/or share personal experiences of the named emotions. Researchers have commented that descriptions and personal accounts of emotions by children with ASD tend to be less coherent and less detailed than those of typically developing controls (e.g.,

ASD tend to be less coherent and less detailed than those of typically developing controls (e.g., Ben-Itzchak et al. 2016; Rieffe et al. 2007). The result is descriptions that sometimes appear inappropriate, although not completely wrong, for the named emotions (e.g., feeling proud upon receiving a present; Losh and Capps 2006). Moreover, Yirmiya et al. (1992) reported that performance correlated positively with cognitive functioning in ASD, a relationship which was not present in typically

positively with cognitive functioning in ASD, a relationship which was not present in typically developing control children, again suggesting that emotional processing in ASD may be mediated by other developmental skills. Additionally, ability to process negative emotions may be more impaired than positive emotions in children with ASD, as evidenced by fewer reports and poorer descriptions of negative than positive emotions by children with ASD compared to typically developing children (e.g.,

than positive emotions by children with ASD compared to typically developing children (e.g., Ben-Itzchak et al. 2016; Rieffe et al. 2007). Furthermore, impairments with emotional concepts may be influenced by challenges in relating social con-texts and relationships to emotional outcomes, as discussed next.

Moderating effect of social context. Emotional processing is often closely related to processing of social information. However, for people with ASD, social cognitive studies have generally revealed deficits in the ability to per-ceive and/or interpret social cues, link socially relevant stimuli with retrieval of social knowl-edge, and evaluate others’ social intentions (e.g., Flood et al. 2011). Teh et al. (2018) demonstrated that increasing social engagement information in pictures reduced

Teh et al. (2018) demonstrated that increasing social engagement information in pictures reduced the frequency of emotional language produced by children with ASD, but increased production of emotional language by typically developing children, particularly in positively valenced conditions. Perhaps social contexts require complex processing skills due to multiple sources of information, including current cues and prior knowledge, that need to be integrated to support emotional processing

current cues and prior knowledge, that need to be integrated to support emotional processing (Minshew and Goldstein 1998). Presumably, the need to process and integrate multiple cues explains why socially based emotions, such as embarrassment, pride, or shame, are reportedly more challenging for children with ASD to recog-nize (Williams and Happé 2010) and describe (Heerey et al. 2003; Losh and Capps 2006) than nonsocial emotions, since socially based emotions require an ability to consider

Capps 2006) than nonsocial emotions, since socially based emotions require an ability to consider others’ perspectives and have an awareness of social norms and their violations. The processing imbalance between social and nonsocial emotions has also been observed in children with learning disabilities (Williams and Happé 2010). Hence, recent reviewers have debated whether and how emo-tional processing in ASD may be associated with broader deficits in ▶“Social Cognition” charac-teristic of ASD

in ASD may be associated with broader deficits in ▶“Social Cognition” charac-teristic of ASD and/or other domain-general information-processing deficits (Leekam 2016).

Theories Underlying Emotional Processing Deficits in ASD There are at least four theories explaining emotional processing deficits in ASD: (1) reduced social motivation in ASD (see review by Chevallier et al. 2012), which partially explains lack of atten-tion to social stimuli; (2) cognitive attention biases and rigidity or selective complex processing impairments (Minshew and Goldstein 1998) that reduce the ability of people with ASD to combine and interpret multiple contextual cues and use

reduce the ability of people with ASD to combine and interpret multiple contextual cues and use rel-evant background knowledge to understand emo-tions; (3) theory of mind impairments that limit ability to attribute mental states to others (Baron-Cohen et al. 1985); and (4) ▶“Weak Central Coherence”, which helps to explain difficulties in holistically processing relevant cues from the face, voice, body posture, and/or situational contexts to understand emotions (Happé and Frith 2006). However, no

posture, and/or situational contexts to understand emotions (Happé and Frith 2006). However, no one theory is yet able to adequately explain the range of emotional processing skills and deficits reported in ASD. Furthermore, age, language, and cognitive skills may be positively associated with theory of mind development, social motivation, or even global processing abilities (Begeer et al. 2008; Steele et al. 2003), but the uneven profile of these skills in ASD has made these relationships

Steele et al. 2003), but the uneven profile of these skills in ASD has made these relationships difficult to ascertain.

Summary Taken together, the extant research on recognition and expression of emotions by individuals with ASD has revealed quantitative and qualitative variation in the pattern and extent of emotional processing skills and impairments in ASD, across a wide range of experimental paradigms. While there is a general consensus in the literature that emotional processing is impaired in ASD com-pared to typically developing controls, there are contrary findings in studies that may be partially

to typically developing controls, there are contrary findings in studies that may be partially attributable to participant sampling. More recent evidence from self-report studies suggest that emotional concepts are underdeveloped in chil-dren with ASD (Rieffe et al. 2007). There is also emerging evidence that the pattern of emotional processing deficits may be uneven across condi-tions of valence and social engagement. Given that the range of skills and deficits is so varied, more than one

and social engagement. Given that the range of skills and deficits is so varied, more than one mechanism appears to underlie emotional processing deficits in ASD. Further research is needed to clarify all these points.

Future Directions After decades of research on emotional processing skills in ASD, the question remains unanswered about whether emotional processing deficits are core in ASD symptomatology, as originally pro-posed by Kanner (1943), or whether deficits arise as a downstream effect of social cognitive deficits or other domain-general processing difficulties. Longitudinal studies may be useful to observe development of skills with age in children with ASD and may eventually enable researchers to

development of skills with age in children with ASD and may eventually enable researchers to unravel cause-and-effect relationships among social/emotional learning and domain-general cognitive, linguistic, and other skills develop-ment. Alternatively, more cohort studies are needed, using well-characterized samples on vari-ables such as age, cognitive functioning, language, and theory of mind development, because the het-erogeneous nature of ASD has made it difficult so far to integrate findings

because the het-erogeneous nature of ASD has made it difficult so far to integrate findings across studies and system-atically explore relationships between participant characteristics and emotional processing.

Questions also remain over how processing of basic (nonsocial) and complex (social) emo-tions is different in individuals with ASD compared to other groups. A few studies have demonstrated valence effects on emotional recog-nition and expression in ASD, but research remains sparse in this area, and little is known about the processing of emotionally neutral situa-tions in ASD (Uljarevic and Hamilton 2013). Hence, it is important for future researchers to systematically manipulate valence and

2013). Hence, it is important for future researchers to systematically manipulate valence and social vari-ables in experimental stimuli in order to examine their separate or combined/interactive effects on emotional processing. Lastly, emotional language use by individuals with ASD is an area that has received limited attention in the literature to date (Lartseva et al. 2014). Studies using this measure have revealed quantitative and qualitative differ-ences in the way people with ASD process

measure have revealed quantitative and qualitative differ-ences in the way people with ASD process and respond to emotional stimuli compared to typically developing controls. Emerging find-ings from children with ASD also suggest that differences exist in the way emotions are concep-tualized from young, in terms of how they reason about and/or experience emotions. Thus emotional language research shows potential to shed light on many questions regarding emotional processing skills in ASD, and

shows potential to shed light on many questions regarding emotional processing skills in ASD, and further work in this area will be useful.

See Also ▶Affective Development ▶Social Cognition ▶Theory of Mind ▶Weak Central Coherence  Emotional Regulation  Synonyms Affective regulation; ER  Definition Emotional regulation (ER, also known as affec-tive regulation) is an area of research that has experienced significant growth in interest during the last two decades. In brief, ER is a person’s attempt to regulate or influence the type and degree of emotional response he or she has to a stimulus, the timing of that emotional response, how

of emotional response he or she has to a stimulus, the timing of that emotional response, how that emotional response is experienced, or how that emotional response is expressed to others (Gross 2007). ER capacity is a person’s ability to regulate their emotions toward adaptive ends.

ER is an aspect of self-regulation. All living organisms engage in processes of self-regulation in order to adapt to environmental demands. In humans, self-regulation is a developmental pro-cess, by which individuals gain greater control over their own physiological, emotional, cogni-tive/attentional, and behavioral responses to their environments. These response domains and their regulation are interrelated. When the environment poses manageable challenges to which a person can draw upon his

interrelated. When the environment poses manageable challenges to which a person can draw upon his or her personal resources to meet these challenges, self-regulatory capacities are strengthened and adaptive development occurs. When the environment poses challenges beyond the capacities of the individual to adapt, maladaptive or disordered patterns of behavior may become evident (National Research Council & Institute of Medicine 2000).

Emotions play an important role in social relationships, both as a way to respond to others and as a way to elicit social connections from others. During typical development, emotional expression develops from generalized arousal states (e.g., a “fussy” baby) to more differenti-ated emotional responses (e.g., anger, sadness, frustration, fear), while the development of cog-nitive capacities helps the person to better under-stand the environmental antecedents of their emotional responses,

helps the person to better under-stand the environmental antecedents of their emotional responses, identify emotional states in others, and develop self-coping strategies. These self-coping strategies are often mediated by language (self-talk), and evidence has long suggested that delayed or impaired language development may have a negative impact on the development of ER.

Aspects of ER capacity include the ability to identify one’s own feelings, to identify feelings in others and empathize, and to manage one’s own feelings toward constructive or adaptive ends. As in other areas of self-regulation, the development of ER capacities evolves from mostly external regulation (e.g., reliance on caregivers to soothe and modulate emotional response) to increasingly internal regulation (e.g., self-soothing and self-modulation of emotional expression). In most young

regulation (e.g., self-soothing and self-modulation of emotional expression). In most young children, external regulation of emotion can be easily seen during frequent social referencing – the tendency to look at a trusted caregiver for cues as to the appropriate emotional response. Temperament (an individual’s typical responses to environmental demands and novel stimuli and ability to regulate emotional and arousal responses to these stimuli) is a related construct.

Self-inhibitory skill (also described as effortful control) is central to the development of ER. This is the ability to behaviorally inhibit a natural emo-tional response in order to obtain a more socially desirable outcome (e.g., not hitting someone when angry). Individuals who are poor at effortful control often experience difficulty with social relationships with peers, caregivers, and authority. ER, however, is not about the suppression of emotion, but rather about understanding emotions

ER, however, is not about the suppression of emotion, but rather about understanding emotions within social contexts and how to modulate emo-tional expression in adaptive ways. A greater capacity for ER helps one to be able to better regulate strong emotions, deal with fearful and frustrating events, and form and maintain mean-ingful and beneficial social relationships.

ER capacity is influenced by a person’s tem-perament, diagnosable disorders that may impact a person’s ability to attend to socially salient information, the degree of demands placed upon the individual by his or her environment, and executive functioning skills (e.g., attending to important environmental details, forming a sym-bolic understanding of the environment and how aspects of the environment interrelate, planning behavioral responses, sustaining and shifting attention, inhibiting, and

interrelate, planning behavioral responses, sustaining and shifting attention, inhibiting, and self-reflecting). Cultural values also exert a strong influence by influencing caregiver responses to emotions and preferred methods for dealing with strong emotion.

Efforts to facilitate ER capacities have included teaching children to identify and label emotional states in themselves and others, to choose between a variety of potential emotional and behavioral responses, to delay gratification, and to use self-relaxation techniques.

See Also ▶Emotional Intelligence ▶Empathy ▶Executive Function (EF) ▶Temperament  Emotional Synchrony ▶Mutual Regulation  Emotionally Withdrawn/Inhibited Attachment Disorder ▶Attachment Disorder  Emotion-Focused Therapy for Autism Spectrum  Definition Emotion-Focused Therapy for Autism Spectrum (EFT-AS) is a small group version of Emotion-Focused Therapy (EFT) that provides a client-led framework within a process-guiding, task-oriented structure (Robinson and Elliott 2017). EFT-AS is a

within a process-guiding, task-oriented structure (Robinson and Elliott 2017). EFT-AS is a humanistic-experiential psychother-apy (HEP), which focuses on accessing and trans-forming core painful feelings often as a result of continued relational injuries through interpersonal encounters. EFT-AS uses the therapist relational stance, evocative process-guiding tasks, group member exchanges, and video Interpersonal Pro-cess Recall (IPR) to address core aspects of emotion regulation, including

video Interpersonal Pro-cess Recall (IPR) to address core aspects of emotion regulation, including cognitive-affective empathy to enhance intra- and interpersonal understanding.

Historical Background Emotion-Focused Therapy (EFT) (Elliott et al. 2004; Greenberg et al. 1993) was developed as a treatment using broadly universally applicable principles to various client presentations. EFT has been used as a treatment for major depression (Greenberg and Watson 1998, 2006; Goldman et al. 2006), with clients suffering from abuse (Paivio and Greenberg 1995), trauma (Elliott et al. 1998), complex trauma (Paivio and Pascual-Leone 2010), and eating difficulties (Dolhanty and

et al. 1998), complex trauma (Paivio and Pascual-Leone 2010), and eating difficulties (Dolhanty and Greenberg 2007), and more recently as a treatment for social anxiety (Elliott 2013; Shahar 2014) and generalized anxiety (Timulak 2015). EFT has been further adapted to meet the specific emotional processing differ-ences of clients on the autism spectrum (Robinson and Elliott 2017).

Rationale or Underlying Theory Emotion-Focused Therapy (EFT) is an evidence-based humanistic-experiential psychotherapy (HEP). EFT combines relational principles from the person-centered approach (Rogers 1951) with more directive evocative interventions from Gestalt and other experiential therapies (Greenberg et al. 1993). As a humanistic therapy, it is grounded in values of authenticity, growth, self-determination, creativity, and pluralism, with the therapeutic relationship seen as a key

self-determination, creativity, and pluralism, with the therapeutic relationship seen as a key curative element. It integrates active approaches of psy-chodrama (Moreno and Moreno 1959) and process-guiding methods from Gestalt therapy (Perls et al. 1951; Perls 1969) and experiential therapy, specifically Gendlin’s Focusing (1981). Emotion-Focused Therapy for Autism Spectrum (EFT-AS) is an integrative group psychotherapy approach grounded in humanistic values and EFT theory and practice and uses

group psychotherapy approach grounded in humanistic values and EFT theory and practice and uses video Interpersonal Process Recall (IPR; Kagan 1984) as a process-guiding method making experiential and self-other relational processing more accessible and concrete.

EFT aims at helping clients to better deal with their emotions; to attend to, accept, symbolize, and make sense of them, for emotion regulation; and, ultimately, to restructure maladaptive emo-tion schemes that underlie client symptoms (Greenberg et al. 1993; Greenberg and Watson 2006). EFT uses several sets of concepts in its theory of function and dysfunction, including emotion schemes, emotion response types, and emotion regulation. According to EFT, emotions have an innately adaptive

response types, and emotion regulation. According to EFT, emotions have an innately adaptive potential, which, if acti-vated, can help clients change problematic emo-tional states or unwanted self-experiences. Therapeutic change in EFT is perceived as resulting from restructuring the cognitive-affective schemes that underlie presenting symptoms.

EFT involves changing emotion with emotion by accessing and transforming maladaptive emo-tions schemes (e.g., shame, fear, and lonely aban-donment) underlying presenting symptoms. As clients on the autism spectrum often have diffi-culty accessing their emotions (Mazefsky et al. 2013) and episodic memory recall (McDonnell et al. 2017), EFT-AS uses video Interpersonal Process Recall as a clinical process-guiding method to facilitate client awareness and arousal. Specifically, to scaffold areas of

method to facilitate client awareness and arousal. Specifically, to scaffold areas of difficulty related to affective empathy for self (emotional self-attunement or processing own emotions) and for other (interpersonal attunement or empathic relat-ing) and also areas of difficulty related to cogni-tive empathy for self (self-understanding, reflection, and conception or theory of own mind (Williams 2010)) and for other or theory of your mind/mental representation (Baron-Cohen 1997). People on the

2010)) and for other or theory of your mind/mental representation (Baron-Cohen 1997). People on the autism spectrum are vulnerable to trauma-related experiences due to a diminished sense of self and lack of self-agency within inter-personal engagement (Robinson 2018). In EFT-AS, a main therapeutic task is repairing emotional hurt resulting from continued relational injuries through interpersonal conflict encounters. Clients on the autism spectrum work in a group setting to evoke and transform

conflict encounters. Clients on the autism spectrum work in a group setting to evoke and transform painful emotions, both directly and vicariously.

Goals and Objectives Several goals have been addressed using Emotion-Focused Therapy for Autism Spectrum (EFT-AS). The main focus of EFT is to help clients to access maladaptive emotions and to transform these to useful adaptive emotions. Indi-viduals on the autism spectrum can have difficul-ties in emotion processing, including recognizing their own and others’ emotions, leading to prob-lems in emotion regulation and interpersonal relating. The main focus in EFT-AS is working with emotional

emotion regulation and interpersonal relating. The main focus in EFT-AS is working with emotional injuries to better aid emotion reg-ulation, including cognitive-affective empathy to enhance intra- and interpersonal understanding. The therapeutic tasks evoke internal bodily focus on emotions, accessing not fully processed trauma-related experiences and compassion responses to self and to other while encoding and symbolizing new adaptive emotions.

The published research to date presents clinical case conceptualizations of clients working through different aspects of intra- and interpersonal distress. EFT-AS is marker driven and uses intra- and inter-personal markers as indicators of client readiness for engagement in therapeutic tasks. As a group therapy, it offers dynamic opportunities for clients to work on their own presenting issues, interper-sonal opportunities between group members and opportunities for attachment patterns to be

interper-sonal opportunities between group members and opportunities for attachment patterns to be played out within the microcosm of the group.

One of the key presenting triggers bringing clients on the autism spectrum to therapy is inter-personal/relational issues, and these have been successfully worked with using a misempathy task (Robinson and Elliott 2017). A second pre-senting trigger bringing clients to therapy is social withdrawal, isolation, and loneliness. The group dynamic can reduce immediate feelings of social isolation, and it has been successfully used with clients working through emotional injuries from trauma-related

it has been successfully used with clients working through emotional injuries from trauma-related experiences (Robinson 2018). A third presenting trigger bringing clients on the autism spectrum to seek therapy is feelings of extreme alienation and a sense of otherness, and this has been worked with successfully through a model of interpersonal rupture and repair (Robinson 2019).

Treatment Participants EFT-AS is aimed at providing therapeutic sup-port to adolescents and adults on the autism spectrum with no additional intellectual disabil-ity and complex communication needs: specifi-cally, for people who are seeking psychological support due to emotional distress and who are struggling to understand themselves and their current and previous life experiences; for those who find others, particularly their typical devel-opment (TD) peers, difficult to understand; fur-ther,

find others, particularly their typical devel-opment (TD) peers, difficult to understand; fur-ther, for those who are isolated and withdrawn who may have a co-occurring depression or anx-iety disorder (social anxiety, generalized anxi-ety); and those who have experienced previous trauma-related difficulties through chronic peer victimization and bullying, social rejection, and loneliness through lack of social opportunity and friendship.

Treatment Procedures Emotion-Focused Therapy for clients on the Autism Spectrum offers a humanistic client-led interpersonal framework within an experiential process-guiding, task-oriented structure. EFT-AS follows a 3-step model consisting of two kinds of alternating sessions: a group therapy session and a video-assisted Interpersonal Pro-cess Recall (IPR) session. It is a brief group treatment lasting a minimum of 9 weeks but can be extended in two-weekly cycles of therapy and IPR-assisted

lasting a minimum of 9 weeks but can be extended in two-weekly cycles of therapy and IPR-assisted sessions, with an ending session in the final week. It is a small group format with between three and six clients and co-facilitation with two therapists. All sessions are video recorded, and the therapist analyses each therapy session (session 1, 3, 5, 7, and so on) to identify therapeutic task markers. The therapist edits three short clips that contain the task marker, which may be multiple

markers. The therapist edits three short clips that contain the task marker, which may be multiple markers for multiple members. The therapist plays these edited clips in the following IPR sessions (session 2, 4, 6, 8, and so on).

The therapist offers empathic attunement with client emotions, helping clients by focusing attention on bodily feelings and by offering experiments in directed awareness and emotion stimulation using imagery and psycho-dramatic enactments, interpersonal exchanges, and video-IPR. Each session offers a familiar sequence, beginning with a transition task signaling the beginning of the therapy session. This is followed by a check-in which offers an opportu-nity to work toward what the client wants

This is followed by a check-in which offers an opportu-nity to work toward what the client wants to accomplish and space to identify unfinished business from the previous session. Next, the therapist facilitates a guided focusing task aimed at helping clients focus attention to their inner bodily feelings.

As EFT is marker driven, the therapist looks for a task marker (emotion marker which is a behavior or discourse that indicates a client’s read-iness to engage in therapeutic work). In EFT-AS, the therapist uses these task markers in two ways. The first is in the moment to guide self- and other experiential processing tasks, and the second is through IPR clip selection to set up tasks in the following IPR session. Once the marker is identi-fied, the therapist is guided by the emotion

in the following IPR session. Once the marker is identi-fied, the therapist is guided by the emotion trans-formation model which provides a clinical strategy for emotional deepening that consists of several aspects within three phases. First, the ther-apist approaches emotions and explores client distress. At the beginning, the therapist works mostly with client global distress, that is, undifferentiated distress, to identify triggers (historical and current), negative self-treatment (negative

distress, to identify triggers (historical and current), negative self-treatment (negative self-talk), and avoidance behaviors (actions, thinking, and emotion). The therapist uses different emotion stimulation tasks to explore global distress and secondary emotions such as reactive anger, shame, or fear.

In the second phase, the therapist assists the client in moving toward painful and avoided emo-tions that have not been fully processed, staying with and deepening painful experience to reach core maladapted emotions. Once the client reaches the core emotion, the stuck painful feel-ings that hurt the most, the therapist helps the client to articulate the unmet need associated with that core pain.

In the third phase, the therapist uses emotion stimulation using imagery and psycho-dramatic enactments to evoke new primary adaptive emo-tions and more adaptive experiences of self and others, such as self-compassion, self-soothing, and assertive anger. These are useful feelings that fit the immediate situation and provide a direction forward. The main tasks entail the use of imaginary chair dialogues such as two-chair dialogue for conflict split, two-chair dialogue for self-interruption, or

such as two-chair dialogue for conflict split, two-chair dialogue for self-interruption, or empty chair dialogue for unfinished business (Elliott et al. 2004).

EFT-AS uses a range of adapted therapeutic tasks to make this more accessible to the processing differences of those on the autism spectrum. The addition of video IPR can be used to scaffold retrieval of autobiographical memory recall for distanced trauma-related experiences evoking and activa-tion of emotions associated with the event and experiential processing of these emotions. It can act as a visual concrete part of self (e.g., fragile self) for empty-chair work, to speak their truth to a

a visual concrete part of self (e.g., fragile self) for empty-chair work, to speak their truth to a significant other (e.g., a lost parent) or express their anger to a harmful other (e.g., abusive bully). Further, it can be used to evoke emotional responses to self, such as self-compassion and also to evoke interpersonal emotional responses, such as expressing and receiving compassion to and from group members. The emerging adaptive emotions facilitate mentalization of self (theory of own mind)

group members. The emerging adaptive emotions facilitate mentalization of self (theory of own mind) and other (theory of your mind) that strengthens intrapersonal and interpersonal agency.

Efficacy Information Emotion-Focused Therapy (EFT) is an empiri-cally supported humanistic-experiential psycho-therapy (HEP). Emotion-Focused Therapy in its individual form has been reported to be success-fully applied for the treatment of depression (Greenberg and Watson 2006), adult survivors of childhood sexual abuse and complex trauma (Paivio and Pascual-Leone 2010), social anxiety disorder (Elliott and Shahar 2017), and general-ized anxiety disorder (Timulak and McElvaney 2015). There is

(Elliott and Shahar 2017), and general-ized anxiety disorder (Timulak and McElvaney 2015). There is also growing evidence of its appli-cation with couples for interpersonal/relational problems (Johnson and Greenberg 1987) and Emotion-Focused Family Therapy (EFFT) with patients suffering from anorexia and eating diffi-culties (Dolhanty and Greenberg 2007). To date, positive preliminary findings for EFT-AS have been reported (Robinson and Elliott 2016) with a number of case conceptualization from

EFT-AS have been reported (Robinson and Elliott 2016) with a number of case conceptualization from clinical data of clients working through specific pre-senting problems, such as misempathy (Robinson and Elliott 2017), trauma-related expe-riences (Robinson 2018), and relational rupture and repair (Robinson 2019).

Outcome Measurement CEPS-AS: Client Emotional Processing Scale for Autism Spectrum (Robinson and Elliott 2016)

CORE-10: Clinical Outcomes in Routine Evaluation QCAE: Questionnaire of Cognitive and Affec-tive Empathy (Reniers et al. 2011) EQ: Empathy Quotient (Baron-Cohen and Wheelwright 2004) HAT: Helpful Aspects of Therapy Form (Llewelyn et al. 1988. TAS-20: Toronto Alexithymia Scale (Parker et al. 2003) OHQ: The Oxford Happiness Questionnaire (Hills and Argyle 2002)  Qualifications of Treatment Providers EFT-AS can be provided by (a) experienced autism practitioners with a master’s degree in Autism

EFT-AS can be provided by (a) experienced autism practitioners with a master’s degree in Autism Studies and successful completion of Counseling Skills in Autism Spectrum module and (b) qualified person-centered counselors/therapists or clinical psychologists with advanced Empathy Training and successful completion of a Autism Spectrum module. This provides basic skills training in the person-centered approach and theory of autism pro-cessing differences. Additional EFT-AS training provides basic

approach and theory of autism pro-cessing differences. Additional EFT-AS training provides basic teaching on setting up and run-ning groups, which consists of learning how to analyze and edit video recordings, how to pre-sent IPR clips, and how to recognize task markers to introduce therapeutic deepening and enactment tasks.

See Also ▶Client Emotional Processing Scale for Autism Spectrum ▶Empathy  Empathizing-Systemizing Theory ▶Systems Intervention  Empathy  Definition Empathy, the capacity to share the feelings of others, is considered a significant core ability in the development of social and emotional functioning. In general, individuals with autism experience difficulties in their capacity to empa-thize, thus failing to successfully engage in social interactions (Charman et al. 1997; Jones et al. 2010; Yirmiya

to successfully engage in social interactions (Charman et al. 1997; Jones et al. 2010; Yirmiya et al. 1992).

In everyday language, as well as in the research literature, the term empathy is used synonymously for both mental and emotional states. However, cognitive empathy pertains to the capacity to rep-resent others people’s thoughts, beliefs, and inten-tions, whereas emotional empathy is defined as experiencing what it feels like for another person to experience a certain emotion, including a bodily sensation. Both indices tap overlapping processes and are considered interrelated aspects of the same

Both indices tap overlapping processes and are considered interrelated aspects of the same complex construct of empathy (Singer 2006). Yet, there are quantitative differences. For example, sharing a close friend’s feelings of grief is felt much differently than the recognition or comprehension of this person’s thoughts and feel-ings in this painful situation. Understanding of these differences has led to the establishment of a more multidimensional approach to the defini-tion of empathy,

has led to the establishment of a more multidimensional approach to the defini-tion of empathy, acknowledging that all these aspects are separate but related constructs of the integral concept of empathy (Eisenberg et al. 2006).

Sharing feelings with others may be manifested in facial and/or vocal expressions or in body movements and gestures. People can feel empathy for others in a range of emotional con-texts, from basic sensations such as sadness or joy to more complex emotions such as love and remorse. Empathy has a variety of definitions such as the ability to place oneself in another’s place (“put oneself in another’s shoes”), the experiencing of another’s affective or psycholog-ical states, or one’s emotional

shoes”), the experiencing of another’s affective or psycholog-ical states, or one’s emotional responses to the emotional displays of others (Eisenberg and Fabes 1990; Moore 1990; Zahn-Waxler et al. 1992). Additional definitions describe empathy as an affective response more appropriate to someone else’s situation than to one’s own situa-tion, or when another person’s emotion evokes an analogous affective experience in oneself (Eisenberg et al. 2006). It is important to note that although in

affective experience in oneself (Eisenberg et al. 2006). It is important to note that although in empathizing one may “feel the same” as another, the affective states of the self and other are nevertheless distinguishable. That is, the emotion that was induced in the self by the perception of the other’s emotional state can be distinguished from the same feeling originating in oneself.

A related concept to empathy is sympa-thy, which is similarly described as an emotional response of sorrow or concern toward someone in distress. Sympathy usually stems from empathy, yet both empathy and sympathy differ from per-sonal distress, which is a self-focused and some-what aversive reaction of anxiety in response to a similar emotional state of distress in another (Eisenberg et al.).

The concept of empathy plays a significant role in developmental social cognition theories such as theory of mind (ToM) and the empathizing-systemizing theory and is associated with con-cepts such as mind reading, mentalizing, and per-spective taking (Baron-Cohen 1995, 2002; Frith 1994). These theories suggest that the character-istic deficits in mentalizing skills that are associ-ated with poor interpersonal relationships hinder the ability of individuals with autism to under-stand and engage

interpersonal relationships hinder the ability of individuals with autism to under-stand and engage in interpersonal relationships. In order to engage in reciprocal social interactions and to successfully navigate social exchanges, one should possess the capacity to recognize and accurately interpret and predict what the other is thinking and feeling and how he or she might respond.

Historical Background In their initial writings, Leo Kanner as well as Hans Asperger described autism as affective impairment pertaining to difficulties in social and communicative functions as well as to diffi-culties in empathy. Kanner described “children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life.” He noted that “It is not a ‘withdrawal’ from formerly existing participation. There is from the start an extreme autistic aloneness

from formerly existing participation. There is from the start an extreme autistic aloneness that whenever possible, disregards, ignores, shuts out anything that comes to the child from the outside” (Asperger 1944; Kanner 1943; Wing 1981). In his description, Asperger specifically addressed “autistic psychopathy” of children who manifested “severely disturbed and considerably limited interaction. . ..and characteristic difficul-ties of social integration” including patterns of lack of empathy and

..and characteristic difficul-ties of social integration” including patterns of lack of empathy and difficulties in “reading between the lines.”

Empathy is long considered an important process known to facilitate interpersonal relation-ships, particularly prosocial behavior. Religious, philosophical, and psychological theories have long debated whether humans are basically good, empathic, and altruistic in nature or whether all prosocial actions essentially derive from underlying egoism and self-interest. Twentieth century psychological theories such as Freud’s psychoanalytic theory viewed human develop-ment mainly as an interplay

theories such as Freud’s psychoanalytic theory viewed human develop-ment mainly as an interplay between two innate trends, “egoistic” and “altruistic,” although later psychoanalytic theories acknowledged prosocial actions as defense mechanisms used to deal with irrational demands such as feelings of guilt, self-destructive tendencies, and sexual strivings – all believed to underlie altruism and empathy.

These theories also put forward the importance of the early mother-child relationship for the develop-ment of empathy, through mental mechanisms of identification and internalization. Furthermore, contemporary psychoanalytic theories consider empathy as crucial to the development of insight, for people may come to see themselves through eyes of others via empathy. Empathy is also con-sidered an important condition for effective ther-apeutic intervention in psychotherapy. Piaget’s theory on

an important condition for effective ther-apeutic intervention in psychotherapy. Piaget’s theory on cognitive development emphasized the transition from infants’ egocentric orientation to the more social orientations characteristic of later periods, through the acquisition of perspective-taking abilities during the preschool years; thus, prosocial behaviors were assumed to emerge at the beginning of the school years (Eisenberg et al. 2006).

Current Knowledge Empathy in Individuals with Autism A considerable body of research investigated dif-ficulties in empathy among individuals with autism, who are characterized by qualitative impairments in social interaction and communi-cation (Baron-Cohen and Wheelwright 2004; Charman et al. 1997; Jones et al. 2010; Kasari et al. 2001; Rogers et al. 2007; Shamay-Tsoory et al. 2002; Yirmiya et al. 1992). It was suggested that individuals with autism exhibit deficits in their capacity to

et al. 1992). It was suggested that individuals with autism exhibit deficits in their capacity to mentalize and empathize and that these core deficits hinder them in developing adequate reciprocal interactions. Individuals with autism reveal difficulties in interpreting social cues and in “mind reading” of others’ emotions; hence, it is more difficult for them to achieve a clear and accurate understanding of what other individuals think, feel, and experience.

Clinical observations suggested that children with autism do not respond to other people’s affect in the same way as children with typical development or children with mental retardation (Sigman and Capps 1997). The empathic response to negative affect (distress of other) was investigated in children with autism in com-parison to children with typical development and children with mental retardation, matched on mental age (Kasari et al. 1993). It was found that more children with autism

matched on mental age (Kasari et al. 1993). It was found that more children with autism ignore, or did not notice, the negative affect of the adults and appeared less concerned than the other children in response to distressed adult. It was suggested that children with autism lack the cognitive and affective prerequisites that are necessary for being attentive and empathic to the emotion of others. Other studies investigated difficulties in the capacity to empathize in high-functioning children

Other studies investigated difficulties in the capacity to empathize in high-functioning children with autism and adolescents compared to typically developing children at the same age (Yirmiya et al. 1992). Children’s ability to dis-criminate between different emotional states, perspective-taking abilities of emotional states, and emotional responsiveness were compared. The strong associations between cognitive abili-ties and empathy that was found in the autism group compared to the typical

between cognitive abili-ties and empathy that was found in the autism group compared to the typical development group may have suggested that children with autism use their cognitive abilities and cognitive strategies to successfully understand and engage in social situations more than is necessary for children with typical development (Sigman and Capps 1997).

Individuals with autism present difficulties in understanding the feelings and perspectives of others, labeling the emotions felt by others, and responding with empathy. They also react unex-pectedly to interpersonal situations. It is important to note that although individuals with autism man-ifest difficulties in empathy, this does not mean that their behavior in real-life situations is cold or uncaring or that their lack of empathy is related to antisocial behavior (Jones et al. 2010; Rogers

uncaring or that their lack of empathy is related to antisocial behavior (Jones et al. 2010; Rogers et al. 2007).

Many individuals with autism appear to show as much warmth, compassion, caring, and concern for others as typically developing individ-uals, especially when the information is presented in a way that allows them to better understand the feelings and perspectives of others. An alternative explanation for the lower empathy levels reported in autism than in typical development may be that these research findings could reflect difficulties in articulating emotions rather than in feeling them.

research findings could reflect difficulties in articulating emotions rather than in feeling them. Evidence for this possibility may be that individ-uals with autism who exhibit greater self-awareness as well as higher cognitive and verbal abilities are able to report their feelings more accu-rately and thus to appear more empathic than indi-viduals with autism with lower cognitive and verbal abilities who exhibit lower levels of self-awareness and who show difficulties articulating their emotions

who exhibit lower levels of self-awareness and who show difficulties articulating their emotions (Travis et al. 2001; Yirmiya et al. 1992). Furthermore, comparing boys with autism and boys with psychopathic tendencies revealed that the latter had significant impairments in emo-tional empathy with intact perspective-taking abil-ities, whereas the boys with autism had a reverse pattern – significant impairments in cognitive perspective-taking abilities and intact emotional empathy (Jones et al.

impairments in cognitive perspective-taking abilities and intact emotional empathy (Jones et al. 2010).

Recently, Simon Baron-Cohen introduced the extreme male brain (EMB) theory of autism (Baron-Cohen 2002), suggesting that individuals with autism may manifest an exaggerated male brain psychometric profile, demonstrating extreme properties in two psychological dimen-sions: extremely low empathizing (defined as the drive to identify another’s mental state and to respond with an appropriate emotion) and extremely high systemizing (defined as mechanis-tic thinking; the drive to analyze, explore, and

and extremely high systemizing (defined as mechanis-tic thinking; the drive to analyze, explore, and construct a system in terms of its underlying regularities).

The Development of Empathy It is well known that infants and toddlers are sensitive and responsive to emotional cues or signals of others, thus yielding behaviors that resemble empathic expressiveness. An infant’s reflexive crying or arousal-containing sucking behavior in response to the crying of another infant are considered early precursors of empathic reactivity (Ungerer et al. 1990; Zahn-Waxler et al. 1992). This emotional contagion, or emotional resonance, refers to the infant’s ability

et al. 1992). This emotional contagion, or emotional resonance, refers to the infant’s ability to imitate another’s emotional distress, without awareness of the other, and therefore is not considered “true” empathy. This kind of emotional involve-ment, which is strongly linked to infants’ early developmental and cognitive abilities, diminishes after the first year as differentiation between self and other increases and toddlers come to perceive themselves as separate beings. Thus, empathy

self and other increases and toddlers come to perceive themselves as separate beings. Thus, empathy emerges throughout the second year of life, as well as sympathetic concern and comforting behaviors in response to others’ distress (Eisenberg and Fabes 1990; Zahn-Waxler and Radkeyarrow 1990; Zahn-Waxler et al. 1992).

Longitudinal studies revealed that empathic behaviors increase and become more sophisti-cated and explicit during the first years, and this increase is associated with the developmental changes that are prerequisites for empathy. These cognitive and emotional prerequisites are self-other differentiation, perspective-taking ability, and emotion regulation, as well linguistic ability and social engagement skills. All these skills are necessary for the child to empathize, comfort others, inquire

skills. All these skills are necessary for the child to empathize, comfort others, inquire about others’ feelings, and provide others with adequate support (Knafo et al. 2008; Zahn-Waxler et al. 1992). Furthermore, secure attachment relationships and early parent-infant interactions contribute to later development of empathy, through the synchronized exchange of shared emotions (“the dance”) between the par-ents and infant in the first year. In the second year, emotion regulation pertains to the

the par-ents and infant in the first year. In the second year, emotion regulation pertains to the capacity for role-taking and the emergence of higher-order self-conscious emotions such as guilt or shame as well as empathy. Socialization and environ-mental influences also play an important role in the second year, when parents already expect their children’s behavior to be socially and interperson-ally appropriate (Eisenberg et al. 2006).

Although the observation of early empathic manifestations in infants and toddlers is not straightforward due to children’s limited verbal skills, some researchers demonstrated the pres-ence of different early manifestations of emphatic behaviors (Zahn-Waxler and Radkeyarrow 1990; Zahn-Waxler et al. 1992). For example, toddlers older than 1 year who observed a peer or adult in distress revealed varying behaviors: Some tod-dlers became quiet and observed the situation with a concerned facial

varying behaviors: Some tod-dlers became quiet and observed the situation with a concerned facial expression; others expressed their discomfort by disquiet and agi-tated behaviors; and others ignored the distressed person and continued with their own activities. The earliest emphatic reactions are mostly physi-cal in nature, such as hugs and pats. After age 2 years, toddlers reveal more explicit empathic and prosocial behaviors such as verbally comforting, reaching for someone to get help,

empathic and prosocial behaviors such as verbally comforting, reaching for someone to get help, giving a victim toys, or trying to find ways to cheer someone up.

Some of these behaviors may be still egocentric in nature; young children may try to comfort the other with things that make them feel better. With age, as ToM abilities become more developed (regarding the differen-tiation between one’s own and others’ states of mind) and as affective arousal becomes more modulated, children’s emphatic and prosocial behaviors become more attuned to the other per-son’s needs (Eisenberg et al. 2006). There is some evidence regarding sex differences in empathy

needs (Eisenberg et al. 2006). There is some evidence regarding sex differences in empathy in the preschool years as well as in adulthood. Girls usually reveal more empathic reactions than boys, such as concern and joining into the emotional experiences of others, and these sex differences are present as early as 14 months. It may be assumed that these differences reflect both biolog-ically based predispositions as well as socializa-tion influences for females to be responsive to the physical and

as well as socializa-tion influences for females to be responsive to the physical and emotional needs of others (Eisenberg et al.).

Not many studies have investigated children with autism in terms of the emergence of empathy in the first years and the early manifestations of sympathetic concern and comforting behaviors in response to others’ distress (Yirmiya et al. 1992), as well as developmental trajectories for the ability to empathize in children with autism. Twenty-month-old toddlers with autism had diffi-culties looking to other person’s face and showing expressed facial concern in response to feigned distress compared

other person’s face and showing expressed facial concern in response to feigned distress compared to control groups of 20-month-old toddlers with developmental delays and typical development (Charman et al. 1997). In a recent prospective study of young siblings of children with autism – a group considered at higher risk for autism – infants later diagnosed with autism paid less attention and showed less affective response to the examiner’s display of a distress reaction as early as 12 months of

less affective response to the examiner’s display of a distress reaction as early as 12 months of age compared to infants who were not later diagnosed with autism (Hutman et al. 2010). Furthermore, it was found that atypical response to another per-son’s distress differentiated infants subsequently diagnosed with autism from those infants who were not later diagnosed with autism spectrum disorder at 36 months. Thus, it was suggested that low levels of responsiveness to another per-son’s

at 36 months. Thus, it was suggested that low levels of responsiveness to another per-son’s distress at 12 and 18 months are indicative of elevated risk for autism spectrum disorder at 36 months. These findings need to be replicated in other low-risk and high-risk infant populations.

Measuring Empathy Several research instruments have been used to measure empathy in children and adults in general and in individuals with autism. The Feshbach and Powell Audiovisual Test for Empathy (Feshbach 1982) was designed to measure children’s empa-thy and emotional responsiveness. It consists of 10 videotaped segments presenting short stories about children experiencing different events and emotions such as happiness, anger, or sadness (e.g., a boy is sad because he lost his dog).

and emotions such as happiness, anger, or sadness (e.g., a boy is sad because he lost his dog). After watching each story, the child is asked to report how he or she feels. In some adaptations of this procedure (Yirmiya et al. 1992), usually when examining children with autism, participants are first asked about the nature of the protagonists’ feelings (labeling the emotion) in addition to the nature of their own emotional response to the video vignette (empathic reaction). This adapta-tion

nature of their own emotional response to the video vignette (empathic reaction). This adapta-tion prevents the examiner from identifying chil-dren as failing to empathize in cases when the child recognizes and reports a different emotion from the target emotion yet reveals the capacity to refer to the protagonist’s emotional state.

Marian Sigman and her colleagues designed specific research procedures for measuring empa-thy among young children with autism (Sigman et al. 1992). The researchers recorded and then coded the child’s reactions to a distress situation that was enacted by the mother. In this enactment, after a short period of play with a wooden pounding toy and hammer, the mother pretended to hurt herself by hitting her finger with the ham-mer, and she displayed facial and vocal expres-sions of distress without

her finger with the ham-mer, and she displayed facial and vocal expres-sions of distress without using words. Children with autism tended to ignore or not notice adults showing these negative affects more often than children with mental retardation or children with typical development.

Carolyn Zahn-Waxler and her colleagues (Zahn-Waxler et al. 1992), who investigated the early development of empathy in children and twins, used similar procedures where both an experimenter and the mother presented simulated situations of distress such as bumping into a chair. In addition, they used mothers as systematic observers, training them to collect data regarding their child’s responses to the emotions of others, emotions both caused and witnessed by their chil-dren. This methodology

to the emotions of others, emotions both caused and witnessed by their chil-dren. This methodology may be of interest to investigators to employ in future studies of empa-thy in children with autism.

Children’s limited verbal ability precludes the use of self-report measures, which are more com-mon in the examination of empathy in adolescents and adults. The Interpersonal Reactivity Index (IRI; Davis 1983) is a self-report measure of empathy comprising four subscales: perspective-taking, empathic concern, personal distress, and fantasy. Although some of these subscales may not directly assess emotional empathy, indices such as imagination or emotional self-control cor-relate with empathy.

emotional empathy, indices such as imagination or emotional self-control cor-relate with empathy. A more recent self-report instrument for measuring empathy is the 60-item Empathy Quotient questionnaire (EQ; Baron-Cohen and Wheelwright 2004). This scale includes items like: “It is hard for me to see why some things upset people so much” or “I find it easy to put myself in somebody else’s shoes” and thus may be measuring prosocial behaviors and social skills in addition to empathy. Adults with

and thus may be measuring prosocial behaviors and social skills in addition to empathy. Adults with Asperger’s syndrome or high-functioning autism scored significantly lower on the EQ than individ-uals with typical development matched for age and sex; in addition, in the typical development group, women score significantly higher than men. Assessing individuals’ beliefs about their own empathy might differ from their actual empathic reactions to emotional situations. Indeed, it is an important

differ from their actual empathic reactions to emotional situations. Indeed, it is an important methodology strength of developmental research over the report mea-sures used with older individuals.

Current Knowledge Recent longitudinal and twin studies have identi-fied continuity in empathic development over time and the relationship between empathy and prosocial behavior (Knafo et al. 2008). It was suggested that empathy is a relatively stable dis-position across both time and different contexts, with heritability that tends to increase with age. Yet, environmental factors such as parenting prac-tices, peer and sibling relationships, and educa-tional programs contribute to empathic

prac-tices, peer and sibling relationships, and educa-tional programs contribute to empathic abilities (Knafo and Uzefovsky 2012). Several biological and genetic mechanisms were proposed as rele-vant to the development of empathy. Empathy was found to be associated with temperamental characteristics: For example, inhibited and unreactive temperament features in the first year were negatively associated with empathy at the age of 2 years (Young et al. 1999).

Other studies have focused on the neuronal correlates and neu-ral mechanisms underlying the ability to under-stand the mental and emotional states of others (Blair 1999; Singer 2006). Different neural cir-cuitries were associated with the cognitive and emotional aspects of empathy: Perspective-taking abilities were found to involve structures of the superior temporal sulcus and the medial prefrontal cortex, whereas emotional empathy involved sensory-motor cortices as well as limbic and

prefrontal cortex, whereas emotional empathy involved sensory-motor cortices as well as limbic and para-limbic structures (the “social” or “emotional” brain). Moreover, it was found that the limbic structures develop earlier than the temporal lobe and prefrontal structures – in line with develop-mental studies that demonstrated the early precursors of emotional empathy during the first year as well as the later emergence of cognitive perspective-taking abilities (Decety 2010; Singer 2006).

Some speculations were raised about the asso-ciations between empathy and autism and the network of visuomotor cells known as mirror neurons (MNs). The MNs are activated and discharged when the individual performs a partic-ular motor action as well as when observing some-body else perform a similar action. Thus, it was suggested that the MNs as an execution/observa-tion matching system may be connected to social and emotional functioning such as imitation and empathy, which are considered as

to social and emotional functioning such as imitation and empathy, which are considered as impaired in autism (Perkins et al. 2010).

Finally, molecular genetics studies have demonstrated the associa-tions between social behavior and two non-apeptides of arginine: vasopressin and oxytocin (Israel et al. 2008; Yirmiya et al. 2006). It was suggested that the arginine vasopressin receptor 1a (AVPR1a) gene and the oxytocin receptor (OXTR) gene are possible contributors to altruis-tic behavior. Furthermore, family studies of indi-viduals with autism and their relatives revealed the role of the AVPR1a gene in mediating the

indi-viduals with autism and their relatives revealed the role of the AVPR1a gene in mediating the association of socialization skills in autism. Other genetic studies examined candidate genes in a group of individuals with Asperger’s syn-drome and a population sample. Nineteen genes showed nominally significant associations with self-report measures of empathy (Empathy Quo-tient questionnaire) and autistic traits (the Autism Quotient questionnaire) (Chakrabarti et al. 2009).

Future Directions Although difficulties in empathy are detectible among individuals with autism, not much is yet known about the developmental trajectories of empathy in infants or toddlers who are later diag-nosed with autism (Hutman et al. 2010). The search for empathy precursors in autism is closely linked to the investigation of early manifestations of autism in the first year/s of life. Future research would do well to track infants who are underresponsive to emotional cues such as others’

research would do well to track infants who are underresponsive to emotional cues such as others’ distress and to explore these infants’ developmen-tal trajectories and later diagnoses. It will be of great importance to know whether early underresponsiveness during the first year predicts future diagnoses of autism or other developmental difficulties. Furthermore, within the field of autism, treatment studies should be initiated to explore strategies to improve the capacity to empathize and thus

studies should be initiated to explore strategies to improve the capacity to empathize and thus to facilitate the various aspects of social interactions

The investment in this training sooner or later pays back, and this achievement helps the dignity, autonomy, health, and social status of the child with previous encopresis.

### Endep **Synonyms** Amitriptyline hydrochloride  **Definition** Endep is an antidepressant. The drug works on the brain by increasing the level of neurotransmitter chemicals, norepinephrine and serotonin, and blocking acetylcholine. While there is some evidence of its effectiveness with symptoms accompanied by hyperactivity, impulsivity, aggression, and self-injury of treatment-resistant youth with ASD at low doses, further research is required. Endep can be used for bed-wetting, provided

with ASD at low doses, further research is required. Endep can be used for bed-wetting, provided that there are no primary bladder issues. Side effects may include weight gain, dry mouth, nausea, and constipation. Clinicians must perform quarterly EKG to evaluate heart irregularities.

### Endocrine  ### Endophenotypes **Definition** A phenotype is a characteristic of an organism or individual that can be observed. In psychiatry, the term is often used to refer to a set of behaviors that constitute a categorical diagnosis. An endophenotype is a measureable characteristic that exists somewhere along the biological pathway from gene risk to the overall phenotype or categorical diagnosis. It is a characteristic that may reflect an underlying or component feature of a disorder,

diagnosis. It is a characteristic that may reflect an underlying or component feature of a disorder, such as autism. The characteristic can be of many types, including biochemical, neurophysiological, neuroanatomical, and cognitive (Viding and Blakemore 2007). It can be a subset of the clinical symptoms but not the full syn-drome itself. For example, “age at first word” has been proposed as an autism endophenotype (Alarcón et al. 2002). While it clearly relates to language disability, it is not

endophenotype (Alarcón et al. 2002). While it clearly relates to language disability, it is not the entire autism phenotype. Some terms have similar meanings but do not focus on the genetic connection. These include “intermediate phenotype,” “biological marker,” “subclinical trait,” and “vulnerability marker” (Gottesman and Gould 2003).

**Historical Background** The term endophenotype was introduced into the psychiatric lexicon in a 1972 book on the genetics of schizophrenia by Irving Gottesman and James Shields (1972). They borrowed the term from a paper by John and Lewis who had used it to describe concepts in evolution and insect biology (Lewis 1966). Gottesman and Shields proposed the endophenotype concept in an effort to speed discovery of genes that contributed to neuropsy-chiatric disorders, especially Schizophrenia

speed discovery of genes that contributed to neuropsy-chiatric disorders, especially Schizophrenia (Gottesman and Gould 2003). The idea was that the complexity of neuropsy-chiatric behavioral phenotypes would likely result from the dysfunction of a greater number of genes than would less complex endo-phenotypes of these disorders (Gottesman and Gould 2003). The discovery of genes that con-tributed to endophenotypes, therefore, would help speed gene discovery in neuropsychiatric disorders both

to endophenotypes, therefore, would help speed gene discovery in neuropsychiatric disorders both because the genes that contributed to endophenotypes would presumably also con-tribute to the disorder and because the genetic research and analysis involved in the discovery of genes resulting in an endophenotype (with fewer genes contributing) would be easier than the discovery of genes resulting in a full-blown neuropsychiatric phenotype (with multiple genes contributing). In 2003, Gottesman and

a full-blown neuropsychiatric phenotype (with multiple genes contributing). In 2003, Gottesman and Gould published a paper updating and further elucidating the endophenotype concept in psychiatry (Gottesman and Gould 2003). They proposed the following five principles, some of which were adapted from those suggested by others, that they state make an endophenotype useful for genetic research:

1.  The endophenotype is associated with illness in the population. 2.  The endophenotype is heritable. 3.  The endophenotype is primarily state-independent (manifests in an individual whether or not illness is active).
4.  Within families, endophenotype and illness co-segregate, (meaning that those with the endophenotype have the illness and those with-out it do not have the illness).

5.  The endophenotype found in affected family members is found in nonaffected family mem-bers at a higher rate than in the general popu-lation (Gottesman and Gould 2003).

As pointed out by Gottesman and Gould, the endophenotype concept lay dormant and largely unutilized from the time of their introduction of the concept to the psychiatric literature in the 1970s until the start of the twenty-first century (Gottesman and Gould 2003). However, in the new century, researchers began to utilize the con-cept significantly more frequently. Gottesman and Gould attribute this change to the lack of success of numerous genetic studies utilizing phenotypes as opposed to

this change to the lack of success of numerous genetic studies utilizing phenotypes as opposed to endophenotypes in discovering genes that contributed to neuropsychiatric disorders despite significant investments and large-scale projects (Gottesman & Gould). The slowness of the progress was certainly evident in research into the genetics of autism (El-Fishawy and State 2010). Regardless of the reason, the use of endophenotypes proliferated substantially after the year 2000 in neuropsychiatric

the use of endophenotypes proliferated substantially after the year 2000 in neuropsychiatric research in gen-eral and in genetic research in autism in particular, as described below (Gottesman and Gould 2003).

**Current Knowledge** The endophenotype concept has been used in multiple studies seeking to identify genes contrib-uting to autism spectrum disorders. For example, a study by Alarcon et al. linked a region on chro-mosome 7 to an autism endophenotype, “age at first word” (Alarcón et al. 2002). Subsequently, this group found evidence for association of this endophenotype to a specific gene in this interval called contactin-associated protein-like 2 (CNTNAP2). A series of subsequent studies have

interval called contactin-associated protein-like 2 (CNTNAP2). A series of subsequent studies have pointed to the involvement of CNTNAP2 in language development and autism (Abrahams and Geschwind 2010). Multiple other endophenotypes have been explored with regard to autism genetics. For example, there has been a long-standing interest in the observation of increased platelet serotonin levels in individuals with ASD (Anderson et al. 1987) and whether this might serve as a useful endophenotype

individuals with ASD (Anderson et al. 1987) and whether this might serve as a useful endophenotype for gene discovery (Freitag 2006). Similarly, enlarged head size, or macrocephaly, has been demonstrated in a subset of autistic chil-dren (Sacco et al. 2007). In this regard, rare cases of mutations in the gene PTEN (phosphatase and tensin homolog) have been found in individuals with macrocephaly and autism. These findings have been robust enough to warrant the recom-mendation that individuals

and autism. These findings have been robust enough to warrant the recom-mendation that individuals with these features should have a genetic evaluation including sequencing of this gene. Quantitative scales have also been developed focusing on identifying potential endophenotypes in autism. For instance, scores on the Social Responsiveness Scale (Constantino and Todd 2005), aimed at measuring the severity of social impairment, have been shown to be heritable and continuously distributed in the

severity of social impairment, have been shown to be heritable and continuously distributed in the population, with parents of autistic children showing significant shifts toward pathological scores (Constantino and Todd).

**Future Directions** Several avenues of autism research have charac-terized traits that could potentially serve as novel endophenotypes. For example, eye-tracking experiments and functional neuroimaging have identified potential signatures of autism risk. Simultaneous advances in genomic technologies will increasingly allow these to be explored. Importantly, as specific risk genes and regions have been identified based on the categorical diag-nosis of ASD, it has become clear that these genetic

been identified based on the categorical diag-nosis of ASD, it has become clear that these genetic factors also increase the liability for a wide range of disorders that were previously conceptu-alized as being distinct. For example, duplications of a section on the short arm of chromosome 16, 16p11.2, have been shown to increase the risk for both autism and schizophrenia. Studies are just now being undertaken examining whether these and similar findings may, in part, reflect shared endophenotypes

undertaken examining whether these and similar findings may, in part, reflect shared endophenotypes among disparate clinical syndromes (State and Levitt 2011).

### England and Autism The history of Autism is a discourse (Waltz 2013), a journey through a disputed landscape, whose territories are alternatively staked by Politics, Education, Society, and Culture. It is diachronic in nature, as the knowledge of the present is built upon the past, but a diachronic that has progressed differently in different states, at different rates as each impact upon each other. Essentially its ori-gins are lost in myth (Frith 1992) but its presence has always been

each other. Essentially its ori-gins are lost in myth (Frith 1992) but its presence has always been felt in one way or another, even before the concept of autism was framed in the Western psychiatric narrative. It is important for the continued understanding of the position that autism occupies as a “phenom-enon” in England to restore the emphasis of the narrative to the cultural landscape as this is the day-to-day experience of people living and work-ing with this contested construct and

this is the day-to-day experience of people living and work-ing with this contested construct and category of humanity. Although the discourse of autism has been framed by professionals and academics, it is in reality only one side of the triangle, whose base is the people who have been ever increas-ingly subsumed into the category, while on the other side of the professionals are the parents who have applied political pressure and undertaken practical projects to improve the lives of their

who have applied political pressure and undertaken practical projects to improve the lives of their children. In the middle is everything else, media representation, popular fictions, and alas a cloud of misunderstanding. However, without autistic people themselves, there would be no discourse at all. It is then a landscape of neurological difference emerging through the subjective expe-rience, upon which political and cultural divisions have been drawn.

**Early History** Although Autism as a term was not coined until 1912, or formally delineated until the 1940s, its phenotype can be found in England at the begin-ning of the psychiatric narrative through a new understanding of the writings of John Langdon Down (Waltz 2013). It can also be found in liter-ature in the equally astute observations of authors whose fictional characters are based on their per-spicacity. Sherlock Holmes springs instantly to mind, but there are examples to be found in

per-spicacity. Sherlock Holmes springs instantly to mind, but there are examples to be found in Dick-ens, Hardy, and so on, going all the way back to Shakespeare, whose professional clown Robert Armin wrote “foole on foole” both a history of his profession and a narrative of the “natural,” among which descriptions you can be certain to find the traits of autism as it is now conceived (Mc Donagh 2008).

Current understandings of autism emerged mostly after the Second World War, with the pre-dominant psychoanalytical school holding sway with the notion of the “refrigerator mother” pre-cipitating her offspring into the form of the unreachable child afflicted with some kind of severe psychosis, to use Bettelheim’s metaphor of the “empty fortress.” In cultural terms, it has become an othering narrative (Said 1977) whose effect on the popular perception of the autistic can still be seen today in

(Said 1977) whose effect on the popular perception of the autistic can still be seen today in popular fiction. For example, Stuart Murray instances (Murray 2008) an Observer Sunday supplement article of the mid-1960s dealing with the “pioneering” efforts of the Lindens school to “reach” autistic children and prepare them for mainstream schooling.

It is important to remember that Education in England since the 1944 education act was predi-cated on separation of children into categories one of which was Educationally Subnormal (ESN) further subdivided into moderate and severe. Chil-dren in the severe category were deemed as “ined-ucable” and only capable of training. Most children who would then have been identified as autistic (if at all) would have fallen into one of the ESN categories. This was a state of affairs that was perhaps first

would have fallen into one of the ESN categories. This was a state of affairs that was perhaps first challenged in 1962 by a group of London-Based parents (including Lorna Wing q. v.) who decided to take matters into their own hands forming the Autistic Children’s Aid Society of North London to establish a school for the education of their autistic children. The Sybil Elgar school was opened in 1965 and the Helen Allison school in 1968. As with many societies who had been established in a

in 1965 and the Helen Allison school in 1968. As with many societies who had been established in a similar fashion by parents of children with a range of impairments, there were some with purely local and others with a regional or national scope. In time the North London group assumed a national focus, and with the realization that autistic children grew up to be autistic adults, dropped the “children” from the title becoming what we now know as the National Autistic Soci-ety (NAS). This was a

from the title becoming what we now know as the National Autistic Soci-ety (NAS). This was a pattern reflected by other impairment groups who had focused originally on children.

**Research** One of the earliest researchers to take an interest in the phenomenon of Autism was Sir Michael Rutter who has been associated with the Institute of Psychiatry Kings College London since 1965, firstly as a consultant psychiatrist at the Maudsley hospital and later as the first chair of child psychiatry. He currently holds the position of professor of Developmental Psychopathology. Although Rutter can best be characterized as “old school” in terms of current developments in the study

Rutter can best be characterized as “old school” in terms of current developments in the study of autism (particularly in terms of gender qv), he did contribute much to the field of epide-miology and helped to establish autism as a probably genetic condition in reaction to the former psychoanalytical and behaviorist per-spectives, thus helping to put the study of autism on a firm scientific footing.

The 1970s saw changes in education, leading to the establishment of special schools and fol-lowing on the publication of the influential Warnock Report this was crystallized into the 1981 Education act, with the widespread use of “special needs” as a category replacing “subnor-mal” a broader term encompassing a range of impairments and disabilities including autism, with an emphasis on mainstream schooling with appropriate provision for those needs with the role of the Special Educational Needs

schooling with appropriate provision for those needs with the role of the Special Educational Needs Co-ordinator (SENCO) being prominent. The 1970s were also a time for the broadening of the phenotype of autism to include a larger population of autistic people hitherto unrecognized.

Lorna Wing in particular, with her NAS col-league Judy Gould, has arguably made one of the greatest contributions to the understanding of Autism through the introduction of the concept of an “autistic spectrum” (Wing and Gould 1979) to refer to this broader conception of the term “autism” which came about after one of the first widespread epidemiological surveys in Camber-well identifying a larger number of people with the traits of autism than those previously recog-nized as having the

a larger number of people with the traits of autism than those previously recog-nized as having the condition. Along with Uta Frith, Wing also helped to introduce the work of Austrian Paediatrician Hans Asperger to the English-speaking world. At the time she saw the use of the term Asperger’s (or Asperger) syn-drome as less stigmatizing to autistic people whose intelligence fell within and beyond the normal range.

Uta Frith, who completed her PhD in Autism in 1968 at University College London, has also been an influential writer and researcher bringing the study of autism as a neurocognitive phenomenon into greater prominence. She developed the weak central coherence explanation of autism which in common with Asperger’s paper, which she was the first to translate into English, recognized strengths as well as deficits in autistic cognition. As author of “Autism Exploring the Enigma,” she also strayed into

as deficits in autistic cognition. As author of “Autism Exploring the Enigma,” she also strayed into cultural territory giving an over-view of what Autism might have looked like in historical times. She has supervised a number of researchers who have gone on to prominence including Francesca Happé who has further devel-oped the central coherence theory (Happé 1999), and Frith also supervised Simon Baron-Cohen (qv).

The seventies and on into the eighties also saw other developments in the perceptions of disability which would have a subsequent impact on the landscape of Autism. With growing social awareness and paralleling the civil rights movement of the USA and anti-apartheid movements in South Africa, segregation became to be seen by groups of radicalized dis-abled people as an experience not unique to race and something accomplished by the educational system, institutionalized care and prejudicial

race and something accomplished by the educational system, institutionalized care and prejudicial treatment of disabled people in the workforce. Out of this grew, the social model of disability which posited that disability arose from societal attitudes and barriers, and impairment was not its cause (Oliver 1990; Finkelstein 1975). In terms of legislation, the 1970s brought in the Chronically Sick and Disabled Persons Act, which began to confer new rights to individuals (autistic people and the

and Disabled Persons Act, which began to confer new rights to individuals (autistic people and the parents of autistic children among them) and new duties upon local authori-ties and health providers, and ushered in Social Services departments.

Another force for social change was the growth of an “antipsychiatry” movement which questioned the basis of contemporary psychiatry as more of a means of containment and control than directed toward recovery, drawing on the works of Foucault and Goffman and exemplified by RD Laing as a radical psychiatrist in England. Autism research would thus far seem to be untouched by this movement except so far as to become finally detached from its initial consider-ation as a psychosis and possible form

far as to become finally detached from its initial consider-ation as a psychosis and possible form of child-hood schizophrenia through its inclusion in the Diagnostic and Statistical Manual, third edition (DSM-III) of the American Psychiatric Associa-tion in 1980 (APA 1980).

Simon Baron Cohen, based at the Autism Research Centre Cambridge University (founded in 1998), did much to popularize the “Theory of Mind” model which he had developed in 1985 (Baron-Cohen et al. 1985). He has subsequently gone on to more controversial research positing the Extreme Male Brain Theory (Baron-Cohen 2002), which has been challenged by Autistic scholars such as Melanie Yergau and others including the authors of this article (Yergau 2013). Dinah Murray developed the interest theory

including the authors of this article (Yergau 2013). Dinah Murray developed the interest theory of Autism (readers may be more familiar with the terms single attention and monotropism) with Mike Lesser (Murray et al. 2005), Although this has not become a mainstream model of autism to the extent of Theory of Mind or Central Coher-ence, it has nevertheless found favor with Autistic scholars as a fairer means of describing the neu-rological mechanisms of autism than any specific model which posits

means of describing the neu-rological mechanisms of autism than any specific model which posits deficit. Murray argues that Autistic people’s strengths and special interests can play an important role in their education and provide a dividend for the employment of autistic people as adults as instanced by the work of Specialisterne, who have been elsewhere in the UK employing Autistic people in testing software.

Research Autism was established by the NAS in 2004 to evaluate and raise funds for research into interventions in Autism as well as providing authoritative guidance for professionals and the public on the bewildering variety of interventions that exist. It is currently winding down with its functions being reabsorbed into the work of the NAS.

**Current Centers for Research, Education, and Publishing** While most of the research into autism has been conducted within the medical framework, there has been a significant focus on Education with certain programs attracting an increasing number of autistic students and researchers such as the Autism Centre for Educational Research at the University of Birmingham and the Sheffield Hallam University Autism Centre’s Post Graduate Certificate run in conjunction with the NAS, both of which have

Autism Centre’s Post Graduate Certificate run in conjunction with the NAS, both of which have included autistic people in provid-ing course materials, teaching, and tutoring. Other prominent research arenas include the Centre for Research into Autism and Education (CRAE) at University College London (UCL), whose former director, Liz Pellicano, has led the way in involving autistic people in setting a research agenda through the shaping autism research series of seminars. Other autistic-led

a research agenda through the shaping autism research series of seminars. Other autistic-led research initiatives worthy of mention include the Participatory Autism Research Collective (PARC) – whose aim is to build a community of those who wish to see more significant involve-ment of autistic people in autism research – and the team of primarily autistic researchers respon-sible for recent surveys of support for autistic students at university and in colleges of further education in England.

of support for autistic students at university and in colleges of further education in England. Besides the Kings College Institute of Psychi-atry, Kings College has been involved in examin-ing the ethical basis of autism research, hosting an ethics discussion group including autistic activ-ists, ethicists, and philosophers as well as autism researchers in an endeavor which led to the con-ference Autism, Ethics, and Society held at UCL in 2010. The Autism Research Group (ARG) at City

Autism, Ethics, and Society held at UCL in 2010. The Autism Research Group (ARG) at City University, London, has also led medical research in attempting to establish the neurobiological and genetic underpinnings of the cognitive and psy-chological differences in Autism. The open access academic journal “Auton-omy” (the Critical Journal of Interdisciplinary Autism Studies) was first published in 2012 with Larry Arnold as Editor. Autonomy has probably published more contributions by autis-tic

2012 with Larry Arnold as Editor. Autonomy has probably published more contributions by autis-tic scholars than any other individual academic journal since it was founded (Arnold, Editorial, 2012).

**Advocacy** The 1990s saw the beginnings of a backlash against the framing of autism without input from autistic people and with the growth of access to the internet during this period, this took on an international dimension as the ideas of Sinclair (2005) and others became available to autistic people in England. Significant in England at the time was the online facilities offered by Martijn Dekker which allowed groups of autistic people to discuss a variety of topics regarding self-help and

which allowed groups of autistic people to discuss a variety of topics regarding self-help and advocacy. From those beginnings, individuals who had initially met online started to meet face-to-face to achieve other aims. These movements drew upon the notion of “neurodiversity,” a term first coined by Judy Singer in 1998 to refer to the natural variation in neurotype. In parallel to Dekker’s mailing list, there were others centered upon other forms of neurodiversity such as dyspraxia. Mary Colley

list, there were others centered upon other forms of neurodiversity such as dyspraxia. Mary Colley (a dyspraxic adult) was a significant figure in this discourse and instru-mental in forming the Developmental Adult Neurodiversity Association (DANDA) in 2003 following dissatisfaction with the parent-led focus of the Dyspraxia Foundation charity, dyspraxia as a condition having strong overlaps with Autism. Many of the early members of this organization were also Autistic and went on to play

with Autism. Many of the early members of this organization were also Autistic and went on to play significant roles in other autistic and neurodivergent movements including member-ship of the Disability Rights Commission neurodiversity action group established in 2005.

In 1999, the NAS saw its first autistic Council member (Richard Exley) and in 2001 saw its first Autistic Board member (Larry Arnold), whose appointment led to significant changes within the organization including constitutional amendment to ensure equal rights and greater participation for autistic people within the organization and signif-icant changes to their public presentation and campaigning. In 2005, a group of Autistic people were asking why there was no equivalent in Europe of Autreat

In 2005, a group of Autistic people were asking why there was no equivalent in Europe of Autreat (a retreat-style conference run by and for autistic people), a question which led to the introduction of a similar event in England known as Autscape. Initially with assistance and advice from Autism Network International (ANI) members Jim Sin-clair and Patty Clarke, in its first year, it managed to attract an international attendance, from the USA, Israel, and with a strong presence from the Nordic

an international attendance, from the USA, Israel, and with a strong presence from the Nordic Countries and the Netherlands. Autscape emphasized the importance of autistic people as an international community.

In 2007 a group of politically motivated indi-viduals met together at Autscape which led to the formation of the London Autistic Rights move-ment, launched at a meeting in City Hall London where the key speakers were Dinah Murray, Larry Arnold, and David Morris, the London Mayors senior disability policy advisor (Arnold, Provi-sional Front Page for Autreach, 2007). The group initially had a specific focus on the capital, with access to the Westminster Parliament; how-ever, this led to a UK-wide

focus on the capital, with access to the Westminster Parliament; how-ever, this led to a UK-wide focus and the forma-tion of Autistic UK which is the only national campaigning organization in the UK run by autis-tic people.

Autistica was founded in 2004 as Autism Speaks UK by Dame Stephanie “Steve” Shirley. In 2009, it decided to end its links with the US Autism Speaks Its aims are to promote and fund “medical research to understand the causes of autism, improve diagnosis, and develop new treat-ments and interventions.” In 2008 the founders of US-based Autism Speaks toured to promote the organization in the UK. This was vigorously opposed by autism rights campaigners who saw the organization as erasing autistic

was vigorously opposed by autism rights campaigners who saw the organization as erasing autistic identity and rights. Of significant import was the Tree House (currently Ambitious about Autism) annual lecture. Tree House had inadvertently invited Bob and Suzanne Wright, the founders of Autism Speaks. In order to bal-ance the expression of opinions, they commis-sioned Autreach to make a video to be shown at the event. The video called “Something About Us” (Murray and Benstock 2007) consisted of a

shown at the event. The video called “Something About Us” (Murray and Benstock 2007) consisted of a collection of autistic people – not all of them verbal – presenting individual segments about the positive aspects of autism, to counter the neg-ative stereotypes and pity invoking narratives of hard-line organizations committed to the elimina-tion of autism.

An example of the progress resulting from such dialogues was the National Autism Project established in 2015 with the aim of providing “authoritative recommendations on those aspects of autism research and practice that have demon-strable effectiveness in benefiting autistic people and their communities.” Dinah Murray’s own advisory team of autistic people subsequently became the autistic advisory panel for the whole project, marking a significant breakthrough in terms of the input of autistic

panel for the whole project, marking a significant breakthrough in terms of the input of autistic people to a national autism initiative.

**Current Issues and Controversies** **Gender** Autism was once thought of as a predominantly male phenomenon with an oft-quoted ratio of four males to one female (and higher in the so-called “low-functioning” individuals). This was defended on the basis that these were the research findings which has led to the Extreme Male Brain Theory of autism (op cit). This has been much criticized from a feminist perspective (Yergau op cit) as stereotyping the so-called traits of maleness.

**Behavioural Approaches to Autism** For the most part, the UK has adopted an eclectic approach to “intervention” and education, including the NAS’ SPELL (Structure, Positive, Low arousal, Links) TEACH (Teaching, Expanding, Appreciating, Collaborating and Cooperating, Holistic), Social StoriesTM and counseling, in contrast to the predominance of ABA (Applied Behavioral Analysis) in the USA. ABA, however, has found its strong proponents in the Treehouse School (op cit). Mentoring has been found

however, has found its strong proponents in the Treehouse School (op cit). Mentoring has been found to be of value in higher education and employment and an autistic mentoring project (the Cygnet Project) was developed by London South Bank University led by Nicki Martin and Damian Milton.

**Pseudoscience and Cures** Ever since the psychodynamic approach to autism was challenged by Bernard Rimland (1964), there has been an increasingly biomedical focus on Autism in some quarters prompted much by Rimland’s later work at the Autism Research Institute (USA), whose findings have been met with some skepticism elsewhere. Undoubtedly the most damaging controversy to emerge initially in England was the Measles, Mumps, and Rubella (MMR) vaccine scare which was bolstered by the since

in England was the Measles, Mumps, and Rubella (MMR) vaccine scare which was bolstered by the since retracted and discredited study of Andrew Wakefield (Flaherty 2011). Since then there has been an explosion in alternative medicine and the promotion of nonvalidated and potentially dan-gerous “cures.”

**Employment** Historically, it is likely that autistic people found it easier to get work, but in an increasingly demand-ing environment this is no longer the case. Not-withstanding the potential problem of successful autistic people being underdiagnosed, there is now substantial evidence of high unemployment of autistic people even among those who are highly qualified. A great deal of this can be attrib-utable to the structural exclusion of autistic people through advertisements and selection

attrib-utable to the structural exclusion of autistic people through advertisements and selection processes, which generally reflect those traits that autistic people are less likely to have. There have been numerous attempts, such as the NAS prospects service, to provide employ-ment support for individuals to help integrate them into the workforce and to keep positions in a highly socialized and rapidly changing envi-ronment. Likewise, there have been approaches concentrating upon the strengths

changing envi-ronment. Likewise, there have been approaches concentrating upon the strengths of autistic peo-ple in recruiting for example software engineers and testers. Economic cases have also been made out for the costs of excluding autistic skills. Recommendations for successful employment involve creating less sensorially stressful working environments and job mentoring through the social aspects of employment.

**Legal Perspectives on Autism** Discrimination on the grounds of race and gender in England had been outlawed by UK legislation in 1965 and 1975, respectively. However, it was not until the Disability Discrimination Act (DDA) 1995 that discrimination on the grounds of dis-ability was made illegal (in respect of employment and the provision of goods and services). The DDA introduced the concept of “reasonable adjustments” for those with disabilities. The Spe-cial Educational Needs and

concept of “reasonable adjustments” for those with disabilities. The Spe-cial Educational Needs and Disability Act of 2001 extended the ban on disability discrimination and introduction of reasonable adjustments to the education sector. In 2010, the Equality Act sub-sumed all previous UK disability discrimination legislation.

Although it took three decades for the law in England to treat disability on an equal footing to race and gender, this is only the beginning. Despite race discrimination legislation having been in place for many years, the Metropolitan Police Service was described as “institutionally racist” by the Macpherson Report of 1999. Insti-tutional racism is likely to be endemic despite the efforts of antiracism campaigners and legislation. Even if disability discrimination is not endemic, and there

antiracism campaigners and legislation. Even if disability discrimination is not endemic, and there are those who argue that it is, the legal requirement to provide reasonable adjustments is not fully complied with in many areas of society including higher education despite the legislative requirement being in place for more than 15 years. The first diagnostic acknowledgment of autism (in the DSM-III) was only 1 year before the leg-islative objective to achieve inclusive education was enacted

was only 1 year before the leg-islative objective to achieve inclusive education was enacted and the introduction of the process around SEN. Although both covered autism, there was likely to be a delay in achieving both objec-tives in comparison to well-established disability categories.

The Autism Act 2009 is the first autism-specific law in the world and first law specific to a particular disability in England. This Act makes imposes certain requirements on local authorities in relation to provision for autistic adults and required the Government to produce an adult autism strategy. The first Adult Autism Strategy was produced in 2010 and updated in 2014. Unfortunately, despite the efforts of those pushing for autism legislation, the Act does not cover children and young people

efforts of those pushing for autism legislation, the Act does not cover children and young people which might have helped autism “catch up” with other SEN catego-ries in education. And as with previous legislation (e.g., the Education Act 1981), no additional funding was forthcoming from Government for implementing the Autism Act provisions.

The Community Care Act (1990) modernised the pioneering Chronically Sick and Disabled Persons Act 1970 which had ushered in modern social service provision. This currently includes provision for services for autistic people including direct payments and personal budgets. Its workings are however currently much restrained by the climate of austerity.

### Enhanced Perceptual Functioning **Synonyms** EPF model  **Definition** The enhanced perceptual functioning (EPF) model of autism proposes that superior function and increased independence of auditory and visual perceptual processes are responsible for the distinct pattern of cognitive, behavioral, and neural performance observed in autism. The EPF model emphasizes the primacy of perceptual pro-cesses, rather than social or higher order cognitive processes, in giving rise to the autistic

pro-cesses, rather than social or higher order cognitive processes, in giving rise to the autistic phenotype. Initially proposed by L. Mottron and colleagues as an alternative to the weak central coherence (WCC) model of perceptual function-ing, the EPF outlines eight principles of percep-tion in autism:

1.  More locally oriented perception is the default for individuals in autistic populations relative to typical populations.
2.  Neural complexity is inversely related to per-formance in low-level perceptual tasks.
3.  Early atypical behaviors regulate perceptual input. 4.  In autism, primary and associative brain regions involved in perception are atypically activated during social and nonsocial tasks.
5.  Higher order processing is variable in autism and mandatory in typical development.

5.  Higher order processing is variable in autism and mandatory in typical development.
6.  Perceptual expertise underlies savant syndrome. 7.  Savant syndrome is an autistic model for sub-typing within pervasive developmental disor-der (PDD).
8.  Enhanced functioning of perceptual brain regions may contribute to abnormalities in per-ception in autism.

Evidence in support of this model stems from the demonstration of enhanced visual functioning across multiple tasks (Caron et al. 2006) and enhanced brain activity in brain regions impli-cated in pattern processing in autism (Samson et al. 2011).

### Entrepreneurial Model **Synonyms** Entrepreneurial supports; Supported employ-ment; Supported work  **Definition** The term Entrepreneurial Model refers to creation of a new business entity as a means of providing work for an individual, or a group of individuals, with a diagnosis of a developmental disability. In this model, the skills and interests of the individ-ual, or a group of individuals, with an autism spectrum disorder are used as a basis for the creation of a new business. The

with an autism spectrum disorder are used as a basis for the creation of a new business. The goal of the endeavor is to create enough revenue from the business to both pay the workers with a disability and support staff who assist them. An advantage of the Entrepreneurial Model is that the work involved is specifically chosen to match with the skills and interests of the individual (or individuals) with an autism spectrum disorder. The biggest challenge for an Entrepreneurial Model is that it

with an autism spectrum disorder. The biggest challenge for an Entrepreneurial Model is that it faces the same start-up costs and difficulties in reaching profitability of any new business endeavor. An Entrepreneurial Model is one work option along a continuum of supported employment for individuals with a disability. In addition to the Entrepreneurial Model, the most common types of supported employment models are an individ-ual placement model, an enclave placement model, and a mobile work

employment models are an individ-ual placement model, an enclave placement model, and a mobile work crew.

### Entrepreneurial Supports **Synonyms** Self-directed support corporation supports; Self-employment supports  **Definition** Entrepreneurial supports are supports that would enable individuals working under an entrepreneurial model to become successful. Suc-cess would be measured by the self-directed busi-ness ability to generate enough revenue not only for salaries of the individuals on the autism spec-trum in the corporation but also for salaries of the staff hired to help them with this

autism spec-trum in the corporation but also for salaries of the staff hired to help them with this endeavor. Like any other business, support takes many forms. It can include help in developing a business plan, securing loans or funding for start-up costs, accounting support in terms of paying taxes and other payroll issues, as well as taking advantage of employer initiatives and tax incentives such as Work Opportunity Tax Credits, Small Business Tax Credits, and Architectural/Transportation

such as Work Opportunity Tax Credits, Small Business Tax Credits, and Architectural/Transportation Tax Deduction: IRS Code Section 190, Barrier Removal (Gerhardt 2009). Support can also be in terms of renting office space, buying furniture and equipment, and advertising the product or service. Job coaching may also be a necessary support for individuals on the spectrum under this model. Prevocational supports may also be necessary for individuals who are working under an entre-preneurial model.

supports may also be necessary for individuals who are working under an entre-preneurial model. Prevocational supports may include travel training on mass transit in order to reach work or business meetings. It may also include how appropriate dress and hygiene for the type of business the individual is engaged in. Independent living skills might include money management and budgeting skills for the individual (e.g., grocery shopping, bill paying, paying for lunch) on top of money management

the individual (e.g., grocery shopping, bill paying, paying for lunch) on top of money management skills or supports for the business. “Many people with disabilities, particularly those in rural areas where jobs are often scarce, have already created opportunities for themselves through entrepreneurship. In fact, according to the U.S. Census Bureau, people with disabilities are nearly twice as likely to be self-employed as the general population, 14.7 percent compared to 8 percent” (US

as likely to be self-employed as the general population, 14.7 percent compared to 8 percent” (US Department of Labor and Office of Disability Employment Policy 2011). Small businesses account for 60–80% of the new jobs annually (US Department of Labor and Office of Disability Employment Policy).

Government supports for individuals with dis-abilities who are engaged in the entrepreneurial model often begin with Vocational Rehabilitation (VR) services and programs:
 *   The Social Security Administration’s (SSA) Plan for Achieving Self-Support (PASS) pro-gram allows people with disabilities receiving SSI benefits to set aside money and resources to help achieve a particular work goal, includ-ing self-employment.

*   The Ticket to Work program connects SSI and SSDI beneficiaries with Employment Net-works (EN) for training and other support ser-vices needed to achieve their employment goals, including self-employment.
*   More than 1,100 Small Business Development Centers (SBDC) offer free or low-cost counsel-ing, training, and technical assistance to indi-viduals seeking to start their own business in communities across the nation.

*   The Service Corps of Retired Executives (SCORE), comprising more than 10,000 coun-selors at 389 offices nationwide, provides free small business start-up advice through one-on-one counseling, group workshops, and online resources.

*   Local One-Stop Career Centers funded through the US Department of Labor’s (DOL) Employment and Training Administration (ETA) assist people in training for and obtaining employment, including self-employment (US Department of Labor and Office of Disability Employment Policy 2011).

### Enuresis **Synonyms** Bed-wetting  **Short Description or Definition** It is typical in developed countries that toilet training begins in the toddler period and usually is completed by age 3; there is some variation in this age (and in toilet training) across cultures. Various factors can interfere with the process including motor difficulties, cognitive and social problems, and lack of motivation (any combina-tion of which may be present in younger children with ASDs). When toilet

of motivation (any combina-tion of which may be present in younger children with ASDs). When toilet training is not achieved or was once achieved and then lost, a diagnosis of enuresis is made.

**Categorization** A distinction is made between primary enuresis (the child has never been fully trained) and sec-ondary enuresis (the child had been trained for a prolonged period – usually at least a year). Night-time or nocturnal enuresis is much more common than the daytime form. Isolated and very occasional episodes of bed-wetting, particularly in younger boys, may not merit either a diagnosis or treatment since there is an expectation that the problem be sufficiently severe as to merit

or treatment since there is an expectation that the problem be sufficiently severe as to merit attention (either because of frequency or because it serves as a source of distress). The diagnosis is not made in very young children and cannot be made if the voiding is due to medical problems.

**Epidemiology** Longitudinal studies have shown that boys are more likely than girls to exhibit the problem. By age 6 years, the vast majority of children (90%) are dry at night, and this number continues to rise so that in adolescence (age 15) only about 1% of boys and 0.5% of girls have episodes of enuresis on at least a weekly basis. There is some sugges-tion of familial risk and association with both stress and psychosocial adversity.

**Natural History, Prognostic Factors, and Outcomes** Spontaneous remission of bed-wetting is common and often occurs by age 7. It is typical in longitudinal studies that during a given year, about 15% of children will have their symptoms remit. Behavioral treatments are typically regarded as a first line of intervention. The presence of multiple risk factors in the child, stress, and psychosocial adversity can complicate intervention. Behavioral psychologists can be involved in situations

adversity can complicate intervention. Behavioral psychologists can be involved in situations where developmental delays are present to help both in an assessment of the child’s potential for understanding and partici-pating in a treatment program and in a broader analysis of any associated behavioral difficulties.

**Clinical Expression and Pathophysiology** **Clinical Expression** A range of theories have been proposed – from those that focus on anatomic abnormality, psycho-logical or neurological immaturity, to psychody-namic explanations. Developmental delay is a risk factor, and some data suggest complex interac-tions of factors in pathogenesis. A genetic com-ponent can be present.

**Evaluation and Differential Diagnosis** Laboratory analysis of urine (to rule out infection) is a first step. There is not a high yield from more medically invasive studies in the absence of an indication for the same. Those children who have both day- and nighttime difficulties are more likely to have anatomical or other physical prob-lems. Sometimes enuresis can be associated with other medical conditions or medications. Urinal-ysis is an obvious first step in evaluation of enure-sis, for

conditions or medications. Urinal-ysis is an obvious first step in evaluation of enure-sis, for example, to rule out urinary tract infection as a cause. In general invasive laboratory studies do not have a particularly high yield and would not be indicated unless other indications were present. Children who have problems in both night- and daytime may be more likely to exhibit structural or other problems of the urinary tract. Ultrasound evaluation is less invasive than past procedures. At times

of the urinary tract. Ultrasound evaluation is less invasive than past procedures. At times enuresis may arise following other medical problems, for example, hyperthyroidism, although this is infrequent. A physical examina-tion should look for potentially treatable underly-ing conditions. Associations to other factors, for example, nocturnal enuresis that follows adminis-tration of a new medication, should be explored as relevant.

**Treatment** Two approaches have been used for treatment: behavioral and pharmacological. Behavioral treat-ments have long been used and combine aspects of classical and operant condition in the “bell and pad” approach. The child sleeps on a pad that, if it becomes wet, closes an electrical circuit and rings a bell, thus awakening the child. A majority of children do respond, and the response is fre-quently maintained after the treatment is discontinued. Other behavioral approaches include

is fre-quently maintained after the treatment is discontinued. Other behavioral approaches include use of a timer to awaken the child period-ically to void. Drug treatments have included several agents. The tricyclic antidepressant imipramine has been used for many decades. An ECG is obtained at baseline and the dose of the medicine gradually increased. Many children respond positively. In such cases periodic attempts to discontinue it should be made. The mechanism of action remains unclear. A

periodic attempts to discontinue it should be made. The mechanism of action remains unclear. A more recent pharmacological treatment has used desmopressin acetate (DDAVP) (an 3ana-logue of a pituitary hormone involved in kidney function). The agent frequently is associated with a positive response, but symptoms do tend to turn once the intervention is discontinued and various side effects can be noted. In the absence of other indications, psychother-apy is not usually indicated.

### Environmental Engineering/Modifications **Definition** Environmental engineering/modification strate-gies, also known as antecedent interventions, are defined as changes to the immediate environment that allow the individual with ASD to process stimuli, predict future events, and respond appro-priately. The purpose of environmental engineer-ing strategies is to provide additional information about the appropriate and expected response in any given situation (Neitzel 2009; Quill 1995). They

about the appropriate and expected response in any given situation (Neitzel 2009; Quill 1995). They are considered proactive strategies to pre-vent problem behavior and increase appropriate behavior before correcting strategies are needed (Bregman et al. 2005). Since they are preventative in nature, antecedent interventions are often con-sidered very socially acceptable interventions (Radley and Dart 2016). There are a myriad of interventions that fall under the heading of environmental

and Dart 2016). There are a myriad of interventions that fall under the heading of environmental engineering. Such interventions include, but are not limited to, social stories and video modeling, functional communication training, consistent schedul-ing, choice, and organization, and visual supports. These interventions are often used to prevent problem behavior, but can also be used to increase adaptive behavior and as academic supports for learners of all ages. It has also been suggested

adaptive behavior and as academic supports for learners of all ages. It has also been suggested that environmental engineering may increase indepen-dence and generalization of learned skills (Quill 1995). The majority of studies on antecedent interventions, though, focus upon their use to decrease problem behavior, such as stereotypy or self-injurious behaviors (Neitzel 2009). Although used widely by educators and considered to be effective and easy to implement, there is com-paratively little

by educators and considered to be effective and easy to implement, there is com-paratively little research on the effects of anteced-ent manipulations on the behavior of children with ASD.

**Historical Background** Antecedent interventions have, in some way, been an important part of interventions for individuals with ASD throughout the short history of inter-vention for the disorder. Historically, researchers have focused on consequences when assessing and intervening for problem behavior, however (Wacker et al. 2006). Division TEACCH, consid-ered by some to be the first program to provide structured interventions for individuals with ASD, has been incorporating environmental

to provide structured interventions for individuals with ASD, has been incorporating environmental engineer-ing strategies since the 1960s (Mesibov et al. 2005). Some antecedents found to influence learning and appropriate behavior include how instructions are delivered, timing and scheduling of learning opportunities, and medical and physi-cal issues. In applied behavior analysis, the antecedents which evoke both problem behavior and appro-priate responding are considered to be critical to

which evoke both problem behavior and appro-priate responding are considered to be critical to intervention. There are two different types of antecedents to consider – those that signal responding will result in a reinforcer (discrimina-tive stimuli), and those that make reinforcement more or less potent (Motivating Operations; Wacker et al. 2006). Tools such as antecedent-behavior-consequence (ABC) data collection and scatterplot data determine what types of envi-ronmental events evoke problem

data collection and scatterplot data determine what types of envi-ronmental events evoke problem behavior and what environmental changes could prevent reoccurrence of these types of behavior (Bijou et al. 1968; Touchette et al. 1985).

**Current Knowledge** Whatever form of environmental engineering is used, it should be universally accepted by the members of the individual’s community and implemented consistently. Those strategies that are most socially valid are more likely to be implemented consistently. Therefore, any strategy should take into account the child’s environment, preferences, and community at large (Quill 1995). Considering antecedents, as well as consequences, allows for more precise assessments and better

Considering antecedents, as well as consequences, allows for more precise assessments and better tailored interventions overall (Wacker et al. 2006). It is also very important that any strategy selected is age-appropriate, especially for older learners with more severe impairments. For exam-ple, a 16-year-old with a visual system that includes pictures of preschool cartoon characters may serve to stigmatize the individual and decrease opportunities for social interaction. A more socially

to stigmatize the individual and decrease opportunities for social interaction. A more socially appropriate alternative might be using pictures of the adolescent themselves or other individuals in the class (Wehman 2006).

Before making environmental modifications, a thorough functional behavioral assessment (FBA) should be conducted to determine what envi-ronmental variables reliably evoke problematic behavior for the individual in question (Bregman et al. 2005; Umbreit et al. 2007). In FBA, detailed data are taken to determine both the environmen-tal events and the consequences that might be maintaining problem behavior. In more difficult cases, a functional analysis might be conducted. Functional analysis

behavior. In more difficult cases, a functional analysis might be conducted. Functional analysis consists of a series of short, tightly controlled sessions where situations which are hypothesized to evoke the problem behavior are recreated. Data are taken on the antecedents, problem behavior, and consequences. If specific situations, when compared to control conditions, do, in fact, evoke problem behavior, they are considered to be the function (Iwata et al. 1994). Hurl et al. (2016) conducted a

they are considered to be the function (Iwata et al. 1994). Hurl et al. (2016) conducted a meta-analysis com-paring interventions derived from functional assessment and analysis to those developed with-out assessment. Interventions developed from functional assessment, and especially functional analysis, had much higher treatment effects than those without. FBA, including functional analy-sis, allows the practitioner to tailor the interven-tion to the function of the behavior being assessed.

allows the practitioner to tailor the interven-tion to the function of the behavior being assessed. Structural analysis (SA; Stichter et al. 2009) may also be of help, and implementation is very similar to a functional analysis. In SA, the conse-quences for problem behavior are held constant and the antecedents are systematically manipu-lated. For example, an interventionist might be interested in whether pictures or verbal prompts are more effective in increasing on-task behavior. In one

in whether pictures or verbal prompts are more effective in increasing on-task behavior. In one condition, verbal prompts are presented to the individual and on-task behavior is reinforced by verbal praise. In the second condition, the same task is presented, but this time visual cues are used to prompt responding. Reinforcement stays con-stant for on-task behavior. The strategy that pro-duces more on-task behavior across several presentations is considered to be the most effec-tive of the two

on-task behavior across several presentations is considered to be the most effec-tive of the two interventions being evaluated. There are several types of environmental engi-neering strategies available to those who work with individuals with autism. For the sake of brevity, these will be broken into the following categories: (1) priming strategies, (2) physical environmental modifications, and (3) activity-based strategies. What follows should not be con-sidered to be an exhaustive list of

(3) activity-based strategies. What follows should not be con-sidered to be an exhaustive list of strategies that utilize environmental engineering; instead, it should be considered to be a survey of the myriad of environmental engineering interventions that are available to the interested reader.

**Priming Strategies** Priming strategies consist of instruction on how to behave appropriately in or preexposure to new or stressful situations. They are designed to provide advanced knowledge to the individual with ASD that allows him or her to predict what will happen in the future. Some examples of priming strategies include video modeling, Social Stories™, and functional communication training. In a traditional priming session, an individual visits an unfamiliar situation (e.g., school)

In a traditional priming session, an individual visits an unfamiliar situation (e.g., school) prior to entering the situation. For example, a student with ASD might visit the first-grade classroom he or she will attend before the first day of school. This allows the individual to become comfortable with the environment so that navigating that envi-ronment is less overwhelming. An example is provided by Koegel et al. (2003). Students experiencing difficulty in preacademic and aca-demic situations

by Koegel et al. (2003). Students experiencing difficulty in preacademic and aca-demic situations were exposed to the day’s lesson the night or day before the lesson was presented in class. This reduced problem behaviors such as stereotypic behavior, repeated requests for the bathroom, inappropriate verbalizations, and dis-ruptive behavior. Many of the strategies that fol-low are used in conjunction with traditional priming to increase appropriate behavior and decrease stress. Orellana et al.

with traditional priming to increase appropriate behavior and decrease stress. Orellana et al. (2014) found that a component package of priming interventions increased compliance with routine dental exams. Intervention included familiarizing participants with common dental tools, video models of den-tal exams, and explaining the dental procedure (Orellana et al. 2014).

**High-Probability Request Sequences (Hi-P)** A High-Probability Request Sequence, or Hi-P, is typically implemented when quick compliance with a less preferred task is required. With Hi-P, a series of requests with a high probability of compliance are presented in quick succession, with the low-probability request immediately fol-lowing. The momentum built by engaging in high-probability tasks increases the likelihood of engagement in the low-probability task (Mace et al. 1997). For example,

increases the likelihood of engagement in the low-probability task (Mace et al. 1997). For example, a teacher may tell a student to do a series of easy responses such as touch their nose, clap their hands, and give them a high five. Once these easy responses are complete, the targeted instruction is delivered. In order for Hi-P to be effective, the interval between requests must be only a few seconds. Using strongly pre-ferred items as reinforcers for compliance with a low-probability request is

Using strongly pre-ferred items as reinforcers for compliance with a low-probability request is also critical to success (Mace et al. 1997; Radley and Dart 2016).

**Video modeling** Video modeling uses a simple video of a social situation or task to teach the student how to com-plete the task or behave appropriately in a partic-ular situation. The student watches this video several times and can pause, rewind, or otherwise manipulate the video model. The video model provides a concrete set of parameters for res-ponding that can be viewed repeatedly to rehearse a social situation (Cihak 2011). Portable video modeling has recently been shown to be

to rehearse a social situation (Cihak 2011). Portable video modeling has recently been shown to be effective in a few studies, using iPad, iPhone, and iTouch technology and provides a unique opportunity for greater flexibility and modeling in the authen-tic environment (Carnahan et al. 2012). Recent research suggests that video models are effective in a variety of environments, with a variety of individual and across a wide variety of skills including social, communication, play, joint

of individual and across a wide variety of skills including social, communication, play, joint atten-tion, academic, motor, and vocational (Acar and Diken 2012). It is considered to be an evidence-based practice according to the National Profes-sional Development Center on Autism Spectrum Disorders (Franzoneand Collet-Klingenberg 2008).

**Social Stories™** Social Stories™are simple stories that are read by the individual prior to entering a social situa-tion. The story highlights at a minimum what the individual should try to say or do and how their behavior affects others. According to Carol Gray, the developer of Social Stories™, the following minimum elements must be present: (1) descrip-tive statements, which present factual information about the situation; (2) perspective statements, which provide information about the

information about the situation; (2) perspective statements, which provide information about the emotions and behavior of others; and (3) directive state-ments, which guide the student regarding strate-gies to try in the situation (Gray 2000; Kokina and Kern 2010). These stories are always written as suggestions for the student in order to encourage flexibility and generalized responding. Social Stories™are reviewed by the individual before the challenging situation presents itself in a calm and

reviewed by the individual before the challenging situation presents itself in a calm and nonthreatening environment (e.g., the social story is best read to the child right before lunch if the cafeteria is a problematic environment). Social Stories™have been recognized by The National Autism Center as an evidence-based practice (Leaf et al. 2016). Teachers and other practitioners report that Social Stories™are an easy, cost-effective way to increase appropriate behavior and teach social skills,

Stories™are an easy, cost-effective way to increase appropriate behavior and teach social skills, especially skills which require taking the perspective of others. Research on Social Stories™is limited, and in most research, Social Stories™have been most commonly used as one element of an intervention package; however, that which does exist suggests that Social Stories™ are best as brief interventions. According to Kokina and Kern (2010), those developed using functional behavioral assessment

According to Kokina and Kern (2010), those developed using functional behavioral assessment (FBA) data and addressing problem behavior versus complex social skills seemed to be most effective. How-ever, Karkhaneh et al. (2010) found in their review of the literature that Social Stories™ increased behaviors such as game playing, read-ing comprehension, and reading and comprehend-ing social situations. Individuals with moderate social skill problems and moderate reading ability seemed to benefit

Individuals with moderate social skill problems and moderate reading ability seemed to benefit more from Social Stories™than those with low social skills and lower reading ability (Kokina and Kern 2010). No evidence is available at present regarding the generalization and long-term maintenance of the effects of Social Stories™. The evidence base for Social Stories™ is at present rather small; however, its use as a brief intervention for individuals with higher com-munication and social skills is

its use as a brief intervention for individuals with higher com-munication and social skills is promising and Social Stories™are being used in a wide variety of intervention settings (Kassardjian et al. 2014).

**Functional communication training (or FCT)** Functional communication training (or FCT) is a strategy in which the individual with ASD is taught to request preferred items or activities. These items are often identified as those requested through problem behavior in the past. Based upon the hypothesis that the majority of problem behav-ior is communicative in nature, FCT provides for a more socially appropriate way to communicate wants and needs for individuals who may have limited expressive

appropriate way to communicate wants and needs for individuals who may have limited expressive skills. In most cases, some sort of alternative or augmentative communication sys-tem, such as paper-based picture symbols or voice output device, is selected for functional communi-cation training. The individual is then taught to manipulate the communication system to request preferred items that in the past triggered problem behavior. Research supports that replacing prob-lem behavior with

in the past triggered problem behavior. Research supports that replacing prob-lem behavior with appropriate requesting skills can decrease the amount of problem behavior in indi-viduals with ASD (Mancil 2006). For example, teaching a child to request a break rather than engage in self-injury can result in a decrease in the problem behavior and an increase in the likeli-hood that the child will request a break appropri-ately (Carr and Durand 1985). Even when problem behavior is not a concern,

request a break appropri-ately (Carr and Durand 1985). Even when problem behavior is not a concern, augmentative and alternative communication devices (AAC) may be used for individuals with-out spoken speech. These devices range from low-technology (such as the picture exchange commu-nication system or PECS; Frost and Bondy 2002) to sophisticated high-tech devices. As with all accommodations and modifications, the system is based upon a thorough evaluation of the child’s needs. A qualified

and modifications, the system is based upon a thorough evaluation of the child’s needs. A qualified speech-language pathologist often evaluates the child and determines the best intervention method for that individual.

**The Picture Exchange Communication System (PECS)** The Picture Exchange Communication System (PECS) is a common and well-known system for communication by individuals with ASD, although its use is not limited to just individuals with ASD. In PECS, individuals are systematically instructed to (1) hand their communicative partner a picture to request items, (2) to recruit attention if the communicative partner is otherwise engaged, (3) discriminate between cards, (4) increase com-plexity and

partner is otherwise engaged, (3) discriminate between cards, (4) increase com-plexity and combinations of cards, and (5) use picture cards to comment on the environment (Frost and Bondy 2002). A 2009 review of the literature returned over 30 articles showing the effectiveness of PECS. Although all presented pos-itive results, many abandoned the protocol in the early phases, leaving the later and more sophisti-cated aspects of PECS untested. The authors suggested a number of research questions,

more sophisti-cated aspects of PECS untested. The authors suggested a number of research questions, including research into generalization of the effects of PECS, using PECS with high-tech communica-tion devices, and investigations into what elements of PECS affect the development of spoken speech for those who acquire it (Sulzer-Azaroff et al. 2009). PECS also offers users an exchange that closely resembles the interactive manner of a speech-based conversation; as the user hands the selected

resembles the interactive manner of a speech-based conversation; as the user hands the selected PECS icon to the receiver, they have the opportunity for reinforcement and engagement, which can be highly motivating (Bondy 2012). One concern that researchers and practi-tioners previously expressed is that the use of PECS will preclude or delay the use of speech in users; this seems to have been resolved. The evi-dence supports that AAC enhances rather than suppresses spoken speech. Adding a

resolved. The evi-dence supports that AAC enhances rather than suppresses spoken speech. Adding a qualified Speech-Language Pathologist to the treatment team increases the probability of success (Bondy 2012; Lerna et al. 2012). In this manner, PECS should be thought of as both an alternative and augmentative system. PECS has also been shown to be effective in addressing deficits in joint atten-tion, imitation, and play skills in young children with autism (Lerna et al. 2014).

At present, there is a debate as to whether visually based communication systems (such as PECS and picture symbol-based devices, also sometimes called aided devices; Mirenda 2003) are better for individuals with ASD than more transient devices and systems such as signed exact english (SEE; also called unaided devices). The rationale is that picture-based symbols use the visual channel (considered to be a strength of individuals with ASD) are more static (i.e., they do not disappear) and

to be a strength of individuals with ASD) are more static (i.e., they do not disappear) and resemble their refer-ents. Recent research suggests that neither system is best for teaching functional communication; rather, choosing a system is an individually based clinical decision. Limited evidence sug-gests that for children who have more advanced fine motor imitation skills, sign may have the advantage of being easier to learn and generalized. However, these conclusions are based upon small

advantage of being easier to learn and generalized. However, these conclusions are based upon small studies with identified methodological difficulties (Tincani 2004).

**Voice output communication devices (VOCA; Mirenda 2003)** Voice output communication devices (VOCA; Mirenda 2003) are an often chosen modality for individuals on the autism spectrum. AVOCA pro-duces either a synthesized or recorded vocaliza-tion when an individual presses a button. These buttons usually have some sort of graphic display. For example, pushing the button with a picture of a drink may produce a sound file where a voice says, “I want a drink.” According to Mirenda (2003), VOCAs

may produce a sound file where a voice says, “I want a drink.” According to Mirenda (2003), VOCAs have the potential to encourage more social interactions. Individuals may respond more readily to an auditory bid for inter-action than a sign or pictorial one. There is some evidence that VOCA devices may assist the func-tional communication of individuals with ASD in school or clinic settings. However, the research on VOCA for children with ASD is somewhat sparse, especially in the area of

However, the research on VOCA for children with ASD is somewhat sparse, especially in the area of gen-eralization to home and community (Mirenda 2003). Still et al. (2014) reviewed the literature on Speech Generating Devices (SGDs) and found few studies on the use of tablets and apps. Most studies focused on a small number of functional responses such as requesting pre-ferred items or attention. Therefore, it is unknown whether SGDs have the capability to promote large vocabularies in

Therefore, it is unknown whether SGDs have the capability to promote large vocabularies in individuals with autism. It is important to understand the variables that predict success with more high-tech commu-nication devices as well as what variables affect the selection of a functional communication system. The continually evolving nature of technology requires a careful eye on the research to support it. Further research is critical in this age of iPads, iPods, and apps that increase

to support it. Further research is critical in this age of iPads, iPods, and apps that increase communication for children with ASD. Tablet computers such as iPads have gained popularity in the past few years. They are readily available and used by people with and without disabilities, thereby reducing the stigma of having an assistive device. At least initially, parents and family members prefer tab-lets to PECS and other portable devices (Allen et al. 2016). The multifunctional nature of

tab-lets to PECS and other portable devices (Allen et al. 2016). The multifunctional nature of tablets allows for one small machine to deliver instruc-tions, visual cues, video models and serve as a SGD (e.g., Vandermeer et al. 2013). It is important to note that just buying a tablet for a child with autism isn’t enough to increase communication and other skills. But paired with individualized instruction and evidence-based practices for teaching, the tablet can be a tool that enhances learning

and evidence-based practices for teaching, the tablet can be a tool that enhances learning and social interaction (Allen et al. 2016).

Whatever functional communication system is used, the representational competence of a learner must be taken into consideration. Repre-sentational competence refers to the ability of a learner to infer meaning from some sort of symbol (Mineo Mollica 2003). Although line drawings are a popular way to create schedules, they are in fact very advanced and abstract representations. While individuals with autism have demonstrated the ability to derive meaning from abstract line draw-ings, they seem

with autism have demonstrated the ability to derive meaning from abstract line draw-ings, they seem to rely more on the resemblance of that drawing to concrete items to derive meaning (Hartley and Allen 2014). For individuals who do not respond to typically used picture symbols, it might be better to use a more concrete representa-tion such as legible photographs or, in some cases, the actual object (Mirenda and Locke 1989).

**Setting Modifications** Setting modifications, such as work systems, visual schedules, and organization and structure, refer to arrangements of the physical settings encountered by learners with ASD so that salient features of the environment are visually clear and so that the individual with ASD clearly knows what to do in each environment. The majority of setting modifications are visual; however, some are auditory in nature or a combination of both (e.g., timers, transition music). Division

some are auditory in nature or a combination of both (e.g., timers, transition music). Division TEACCH uses many setting modifications, such as color coding, stations, and visual cues, to reduce the amount of verbal interaction (Mesibov et al. 2005). The rationale for using visual setting modifications is that most individuals with ASD tend to more easily process stimuli visually rather than verbally.

**Visual schedules** Visual schedules function in much the same way as a “to-do list.” In a visual schedule, the events of a person’s day (or in most cases, a subset of the person’s day) are arranged on a schedule either horizontally or vertically (Hume 2008). Visual schedules may also be created for specific tasks. For example, the task of hand washing may be broken into its component parts and a visual of each part may be placed in the bathroom to prompt the appropriate hand-washing sequence.

visual of each part may be placed in the bathroom to prompt the appropriate hand-washing sequence. It allows the individual with ASD to process and organize his or her time. In most cases, pictures are used to represent each of the activities; however, words can be used for higher-functioning individ-uals and actual items are sometimes used for indi-viduals with less processing and representational skill. As each item is completed, the picture is removed and put away, signaling its completion.

skill. As each item is completed, the picture is removed and put away, signaling its completion. When creating a visual schedule, it is important to consider the needs of the child. For example, a younger or less experienced learner may need to have a simple schedule that consists solely of what is happening now and what will happen next. A more advanced learner may be able to process a full day’s schedule. In the case of a task-based visual schedule, a less experienced learner might need a

schedule. In the case of a task-based visual schedule, a less experienced learner might need a more detailed analysis, whereas the more advanced learner might be able to anticipate and chunk information into a single visual cue. Exam-ples of how to create and use appropriate visuals are available (see Hodgdon 1998). Representa-tional competence, described earlier in this article, should be considered as well.

Although visual cues are often associated with schedules and/or task sequences, photographs and other types of picture symbols can be used to prompt appropriate behavior in a number of ways. Many individuals with ASD respond well when there are visual cues in the environment that can help them understand how to respond and when. Labels with picture symbols may also be used to describe expectations in the environment. For example, a child’s place at the dinner table might be signaled with their

in the environment. For example, a child’s place at the dinner table might be signaled with their picture on a placemat. The child is then instructed to find their picture and sit at that chair. West (2008) found that pictorial cues were more effective than verbal prompts in teaching a variety of skills to individ-uals with ASD. These skills both generalized to novel skills and maintained over time (West 2008). Knight et al. (2015) reviewed the literature on visual schedules and used the

time (West 2008). Knight et al. (2015) reviewed the literature on visual schedules and used the criteria estab-lished by Horner et al. (2005) to determine whether visual schedules should be considered an evidence-based practice to increase, maintain, and generalize skills for individuals with autism. Their findings support the consideration of visual schedules as an evidence-based practice for individuals with autism and suggest that they can be used to teach transition behaviors, improve

individuals with autism and suggest that they can be used to teach transition behaviors, improve latency from task direction to task initiation, and decrease prompts required for transitions.

Spriggs et al. (2015) examined the use of iPad technology with visual schedules to support four students with autism as they transitioned between activities. They found that the portable technology motivated the students, was age appropriate, socially acceptable, was readily available, and afforded the opportunity to embed video model-ing within the visual schedules. While two of the students became independent with their tasks using the visual schedules with embedded video modeling, two

became independent with their tasks using the visual schedules with embedded video modeling, two required the additional support of video chunking. All four students high levels of generalization when the video models were faded from the visual schedules.

**Organization of elements in the environment** Organization of elements in the environment is also considered to be an important part of envi-ronmental engineering for individuals with autism. Some advocate for more ambient lighting, reduced distractions, and less stimulating environ-ments. These changes are introduced to reduce the amount of stimulating sensory input and allow the child with autism to focus upon those important parts of the environment (Kluth 2003). Organizing the

with autism to focus upon those important parts of the environment (Kluth 2003). Organizing the environment by activity and reducing clutter is another element of environmen-tal engineering. For example, a teacher might use bookcases to cordon off the reading area and sur-round the area with red tape. The activity area may include active toys and may be surrounded by blue tape on the floor. These supports are designed to give the individual with autism more information about what is expected in

supports are designed to give the individual with autism more information about what is expected in certain areas of the classroom or home. These types of visual supports are considered to be critical to the structured teach-ing strategies developed by division TEACCH (Mesibov et al. 2005). Some interventionists have called eliminating clutter and extraneous stimuli sterilizing the environment (Carbone 2003). As with all interventions, these supports should be individualized; some individuals

2003). As with all interventions, these supports should be individualized; some individuals will respond better to quiet environments while others work bet-ter with background noise (Scheuermann and Hall 2008). Clear and consistent scheduling is also con-sidered to be a critical environmental support. Many individuals with autism have difficulty processing open-ended instructions or activities; therefore, supporting the understanding of the beginning or end of an activity can help to increase

therefore, supporting the understanding of the beginning or end of an activity can help to increase appropriate behavior. Visual schedules can assist with this task, as well as timers and cues such as music during transitions (Scheuermann and Hall 2008). Any organizational strategy must be flexible; that is, the individual with ASD should be pre-pared in advance for changes or out-of-the-ordinary events. For example, a birthday party might be put on the calendar, or a surprise icon might be

events. For example, a birthday party might be put on the calendar, or a surprise icon might be placed on the visual schedule to signal an unexpected event. While providing clear visual cues and eliminating extraneous stimuli from the environment are considered to be best for individuals with ASD, there is little research to support effectiveness at this time. Several litera-ture searches with terms such as “classroom orga-nization and autism,” “environment and autism,” and “environmental

terms such as “classroom orga-nization and autism,” “environment and autism,” and “environmental organization and autism” returned no empirical articles. Studies that inves-tigate the effects of a carefully organized physical environment need to be conducted.

**Activity-Based Strategies** Activity-based strategies are those that are embed-ded into everyday activities and provide modifi-cations or accommodations for individuals with ASD. Some examples include supporting aca-demic, modifying task, incorporating preference and choice, and prompting techniques.

**A well-known intervention from TEACCH is the work system.** A well-known intervention from TEACCH is the work system. In the work system, a task is broken down into its component parts and visuals are created that communicate to the learner with ASD (1) what is to be done, (2) how much work needs to be done, (3) when he or she is finished, and (4) what the person should do once the work is complete. The goal of the work system is to increase independence in children with ASD and decrease

complete. The goal of the work system is to increase independence in children with ASD and decrease prompts. It has been shown to be effec-tive with elementary and middle school students and can be used to teach a myriad of tasks includ-ing vocational, self-help, and transitions (Hume and Carnahan 2008). Boyd et al. (2014) found that preschool-aged children with autism made gains or reductions in autism characteristics using the TEACCH system. An interesting finding in this study was that

in autism characteristics using the TEACCH system. An interesting finding in this study was that students with lower cognitive abil-ities demonstrated the most significant gains. In the first study to examine the effects of the TEACCH work system on task accuracy and the use of newly acquired skills, Hume et al. (2012) found that the TEACCH work system increased student accuracy and reduced prompt dependency for three first grade students with autism. These results generalized across settings

dependency for three first grade students with autism. These results generalized across settings including the general education setting, where the TEACCH systems were never used. This finding offers promising evidence that skills could be taught in a special education setting using the TEACCH work systems and would generalize to inclusive, general education settings.

**Academic supports and task modifications** Academic supports and task modifications are those supports that allow an individual to be suc-cessful at a task. Some of the core characteristics of ASD (e.g., communication, restricted, and repetitive interests) can directly affect academic achievement (Fleury et al. 2014). These supports might include visual cues, such as reducing the amount of visual stimuli to isolate visual tasks (such as folding a piece of paper to cover up additional questions

stimuli to isolate visual tasks (such as folding a piece of paper to cover up additional questions on a test). Other visual sup-ports include highlighting pertinent information, color coding salient information, etc. Other mod-ifications may include frequent proactive breaks (i.e., breaks set at preset intervals as opposed to in response to agitation) or using a task analysis, where a task is broken into its component parts and taught in a systematic fashion. Considerations for creating academic

into its component parts and taught in a systematic fashion. Considerations for creating academic and task modifications are available in Vaughn and Bos (2012). Visual supports such as the visual schedules described above can also be used to modify tasks.

More students identified as having ASD are continuing their education beyond K-12. Accommodations for individuals with ASD mirror those offered to others with disabilities in higher education, such as extended time and alternative formats of assignments (Gelbar et al. 2014). This points to an increased importance of teaching to generalization in postsecondary environments. Many of the antecedent interventions presented throughout this article, such as priming, clear expectations, and visual

interventions presented throughout this article, such as priming, clear expectations, and visual supports, are beneficial with older learners with ASD (Fleury et al. 2014). More research is needed, however, on how to best support learners with ASD in secondary and post-secondary settings.

**Incorporating preference and choice** Incorporating preference and choice can increase the success of an individual with ASD. Those items that a child is more likely to choose are typically the most reinforcing (Mason and Egel 1995) yet individuals with autism are making fewer daily choices than those without autism (Mehling and Tasse 2015). Using preferred items for teaching may also increase the likelihood of attention. Giving individuals simple choices, such as the order in which to

the likelihood of attention. Giving individuals simple choices, such as the order in which to complete a task, can decrease problem behavior and increase more socially appropriate behavior (Smeltzer et al. 2009; Ulke-Kurkcuoglu and Kircaali-Iftar 2010) and improve social outcomes such as community inclusion and interpersonal relationships (Mehling and Tasse 2015). Rispoli et al. (2013) found that although rates of challenging behavior were lower for all choice conditions than for no choice

that although rates of challenging behavior were lower for all choice conditions than for no choice condi-tions, offering students with ASD choices across activities (i.e., the choice of a math or reading task) resulted in a greater decrease in challenging behav-iors than offering choice within activities (i.e., the choice of using a pen or a pencil).

There are many different types of assessments of preference. Often, teachers and caregivers will give families a checklist or open-ended question-naire to complete. Professionals, however, should be aware of respondent bias when questionnaires are used. Free-operant preference assessments con-sist of giving a child free access to a limited num-ber of items. Those manipulated or consumed most frequently are considered to be the most preferred. In a forced-choice preference assessment, items are

are considered to be the most preferred. In a forced-choice preference assessment, items are presented in pairs and the child is asked to choose which one they would like to manipulate or consume. It is important to note that different types of preference assessments may yield different results; therefore, multiple modalities of preference assessment may be in order when finding preferred items proves difficult (Kodak et al. 2009).

**Related to choice is the notion of environmental enrichment.** Related to choice is the notion of environmental enrichment. In environmental enrichment, addi-tional items are provided that allow the child to be appropriately engaged in activities as opposed to engaging in repetitive, stereotypic behavior (Neitzel 2009). Visual cues, items to hold, and timers may also be effective interventions for diffi-culties with transitions and wait time. Ringdahl et al. (1997) found that systematically

for diffi-culties with transitions and wait time. Ringdahl et al. (1997) found that systematically providing environmental enrichment in the form of preferred items to manipulate reduced self-injurious behavior in three participants with developmental disabil-ities. A recent review of the literature found envi-ronmental enrichment to be an effective strategy for reducing stereotypic behavior in individuals with developmental delays (Lancioni et al. 2009).

**Prompts are additional instructions provided to a child with autism** Prompts are additional instructions provided to a child with autism that allow them to be successful in activities. The prompts and prompting sequence is tailored to the learner with ASD. Common strat-egies include the least-to-most prompting sequence, where prompts are introduced in order of intrusiveness (typically from verbal to hand-over-hand guidance) until the child is successful. Most-to-least prompting reverses the

to hand-over-hand guidance) until the child is successful. Most-to-least prompting reverses the sequence and systematically fades prompts as the learner needs less and less assistance to be successful. In time delay, the teacher gradually increases the time between the instruction and the prompt until the learner anticipates the prompt (Alberto and Troutman 2009). The evidence base supports the use of prompting for most behaviors and individ-uals of all ages (Neitzel and Wolery 2009).

**Future Directions** Anecdotal and empirical evidence support the use of environmental engineering for individuals with ASD; however, additional empirical evidence is needed for specific environmental engineering strategies. Antecedent-based interventions are popular among practitioners because they are easy to implement, considered to be cost-effective and are perceived to be effective. Although there is much evidence that antecedent-based interven-tions are being utilized with individuals on

there is much evidence that antecedent-based interven-tions are being utilized with individuals on the autism spectrum, much more research should be devoted to investigating why and how these inter-ventions are effective. The best-researched environmental engineering interventions seem to be those surrounding func-tional communication training, especially PECS, and priming. Many interventions have a rapidly growing evidence base, such as Social Stories and video modeling. Others, such as

have a rapidly growing evidence base, such as Social Stories and video modeling. Others, such as environmental arrangements and academic supports, have little evidence to support them. There is a marked paucity of literature on supporting adolescents and adults, especially those choosing postsecondary education. It seems as if, in many ways, “the devil is in the details.” At present, which interventions work best for specific students and the details of implementa-tion seem to remain the domain

work best for specific students and the details of implementa-tion seem to remain the domain of clinical judg-ment. Evidence-based guidance for clinicians may assist them in making more efficient, individualized decisions for intervention. Considering environ-mental engineering is deemed important in many respected books and training manuals, and more evidence is needed to support its use.

### Environmental Risk Factors for Autism **Definition** Environmental risk factors for autism may be broadly defined as any nongenetic contributor to the risk of autism and include reproductive-, dietary-, chemical-, and demographic-related exposures.

**Historical Background and Evidence for a Role of the Environment** Environmental factors have been explored as con-tributing to the development of autism spectrum disorders (ASD) since the condition was first char-acterized in 1943 by Dr. Leo Kanner, who stated that children with autism had “very few really warm-hearted fathers and mothers” (Kanner 1943). Soon after, the term “refrigerator mother” was coined, which blamed the child’s behaviors on emotionless parenting (Bettelheim 1972). This

was coined, which blamed the child’s behaviors on emotionless parenting (Bettelheim 1972). This explanation has since been disproved, and though the focus shifted from environmental factors for some time, research from other areas has clearly demonstrated a role of the environment in ASD. Early twin studies in the 1970s and 1980s demonstrating non-concordance of diagnosis in monozygotic twins provided support that the environment, in addition to genetics, plays a key part in the etiology of ASD

support that the environment, in addition to genetics, plays a key part in the etiology of ASD (Folstein and Rutter 1977; Steffenburg et al. 1989). Over time, esti-mates of environmental contribution to ASD have increased, with current estimates indicating that the environment is responsible for between 50% to 55% of ASD genetic variance (Hallmayer et al. 2011; Sandin et al. 2014). Evidence of structural and functional brain differences in individuals with ASD point to the prenatal and

of structural and functional brain differences in individuals with ASD point to the prenatal and perinatal developmental period as a key vulnerable window for risk of ASD. The critical stages of neurodevelopment within early gestation provide a period of increased suscepti-bility to environmental exposures which may con-fer risk of ASD. Two historical examples have demonstrated the role of environmental prenatal exposure on ASD risk. The use of thalidomide for morning sickness in the 1950s

prenatal exposure on ASD risk. The use of thalidomide for morning sickness in the 1950s demonstrated a marked increase in the risk of ASD, far greater than estimates from that decade (Lotter 1967). Prenatal use of valproic acid, an antiepileptic drug, has also been shown to increase ASD risk, in children whose mothers used anticonvulsants during pregnancy, as reported in multiple studies (Moore et al. 2000; Rasalam et al. 2005). In addi-tion to these historical examples, the increasing

(Moore et al. 2000; Rasalam et al. 2005). In addi-tion to these historical examples, the increasing prevalence of ASD lends support for continued investigation into environmental risk factors. While improved awareness, social acceptance, and shifts in diagnostic criteria explain part of this increase, analyses have suggested steep rises in incidence that cannot be fully explained by these artifacts of societal changes (Hertz-Picciotto and Delwiche 2009; King and Bearman 2009). One study found

of societal changes (Hertz-Picciotto and Delwiche 2009; King and Bearman 2009). One study found that up to 40% of the rise in prevalence in Denmark could be due to yet unknown environmental causes (Hansen et al. 2015).

**Current Knowledge** **Prenatal and Perinatal Factors** One well-studied and consistently replicated risk factor is parental age. Increased maternal and paternal age are each independently associated with ASD risk. Maternal age greater than 35 is often associated with a substantial increase in risk compared to women younger than 25 according to a meta-analysis (Sandin et al. 2012). Paternal age greater than 40 is also associated with increased risk of ASD in offspring (Durkin et al. 2008). In

greater than 40 is also associated with increased risk of ASD in offspring (Durkin et al. 2008). In addition to being a proxy for age-related genetic changes in germ cells, environmental explanations for this risk range from increasing toxin loads in both mother and father to increased risk of autoim-mune disorders and rates of pregnancy complica-tions in mothers (Shelton et al. 2010). A few environmental factors may represent markers or proxies, as opposed to true risk factors. These include

factors may represent markers or proxies, as opposed to true risk factors. These include seasonality, or season of conception or birth, which has been associated with ASD risk (Zerbo et al. 2011), with some variation in findings. This may be due to seasonal exposures like pesticide use or infections. Inter-pregnancy interval (IPI), or the time between the live birth of one child and the conception of another pregnancy, may also represent a proxy measure. Several population-based investigations

of another pregnancy, may also represent a proxy measure. Several population-based investigations reported that shorter IPIs of less than 12 months had odds ratios ranging from 1.44 to 3.39 compared to IPIs greater than 36 months (Cheslack-Postava et al. 2011, 2014; Durkin et al. 2015). This association may be a result of the depletion of essential mater-nal nutrients, such as folate, which can take up to a year postpartum to replenish (O’Rourke et al. 2000). Other mechanisms potentially

can take up to a year postpartum to replenish (O’Rourke et al. 2000). Other mechanisms potentially responsible for this association include maternal stress and inflammation; however, no studies to date have examined these factors as potential mediators of the IPI-ASD association. Long IPIs of greater than 120 months have also been associated with ASD risk (Cheslack-Postava et al. 2014; Durkin et al. 2015), but overall findings remain inconsistent.

**Immune Factors** A growing body of evidence points toward maternal immune system response during the prenatal period as an etiologic area of interest. One study reports that maternal hospitalizations due to infection are associated with a 30% increase in ASD risk, regardless of which trimes-ter the hospitalization occurred (Lee et al. 2015). Other epidemiological investigations support these findings (Zerbo et al. 2015). However, evidence distinguishing infection type (viral vs. bacterial)

findings (Zerbo et al. 2015). However, evidence distinguishing infection type (viral vs. bacterial) and timing remains inconsistent. A recent study examined maternal influenza and ASD in a population of 196,929 children and found that there was no significant association between ASD and physician visits for influenza or an influenza vaccination (Zerbo et al. 2017). The CHARGE (CHildhood Autism Risks from Genet-ics and the Environments) study (Hertz-Picciotto et al. 2006) also found no association

from Genet-ics and the Environments) study (Hertz-Picciotto et al. 2006) also found no association with mater-nal influenza but did find an increase in odds of ASD with maternal fever in the second trimester (Zerbo et al. 2013). Consistent with this finding, a large prospective Norwegian study observed more than a tripling of risk associated with three or more fever episodes after 12 weeks’ gestation (Hornig et al. 2018). Regardless of infection type, there are several studies which describe

(Hornig et al. 2018). Regardless of infection type, there are several studies which describe altered immune marker concentrations during gestation with increased risk of ASD. Women with elevated levels of circulating cytokines and chemokines, such as interleukin-6 (IL-6), during pregnancy were more likely to have a child with both ASD and intellec-tual disability (Jones et al. 2017). IL-6 is secreted within the body to stimulate immune response and is known to aid in fighting infection; unlike

within the body to stimulate immune response and is known to aid in fighting infection; unlike most interleukins, it readily crosses the placenta into the growing fetus’s circulation (Zaretsky et al. 2004). Investigators also found that high concentrations of C-reactive protein, an inflammatory biomarker, within maternal serum during pregnancy increased the risk of ASD by 43% in a sample of nearly 1.2 million mother-child pairs (Brown et al. 2014).

**Medication Usage** In addition to valproic acid, recent studies suggest that prenatal use of other medications may also influence ASD risk. Selective serotonin reuptake inhibitors (SSRIs), commonly used to treat depression, have been associated with ASD in several studies. Mothers taking SSRIs during early pregnancy had between a 1.4- and 1.8-fold increase in risk of having offspring with ASD (Brown et al. 2017). It is possible that maternal depression and mental illness, both associated with

et al. 2017). It is possible that maternal depression and mental illness, both associated with increased ASD risk in the child and indicated for use of SSRIs, are responsible for this finding (Brown et al. 2017) (a situation known as “confounding by indication” where the condition rather than the treatment represents the true risk factor). However, further research is needed to clarify the associations between antidepressants, maternal mental illness, and ASD. An important consideration in

between antidepressants, maternal mental illness, and ASD. An important consideration in studies of medication use and ASD is weighing the potential risks versus the benefits, as untreated conditions may also influence risk, and public health mes-sages need to be carefully presented to pregnant women only after research has consistently dem-onstrated associations in separately replicated studies. Recently, prenatal acetaminophen use has also been examined in association with ASD. Two large

Recently, prenatal acetaminophen use has also been examined in association with ASD. Two large studies observed that higher maternal use of acetaminophen during pregnancy was associ-ated with increased risk of ASD or autism-like symptoms, as well as attention deficits and hyper-activity (Avella-Garcia et al. 2016; Liew et al. 2016). Both studies found that earlier and more frequent use during pregnancy was associated with higher risk. However, these findings require replication and further study,

was associated with higher risk. However, these findings require replication and further study, careful selection of comparison group, and clearer details on dosage and frequency of use.

**Pregnancy Complications** Several pregnancy complications have been repeatedly associated with increased risk of ASD. Metabolic complications, like gestational diabetes, have been associated with a consistent increase in risk of ASD in several studies (Lyall et al. 2012; Xiang et al. 2015; Li et al. 2016; Connolly et al. 2016), as have preeclampsia and maternal obesity (Walker et al. 2015; Sanchez et al. 2017). Numerous studies have implicated complications in the perinatal period, with risk

et al. 2017). Numerous studies have implicated complications in the perinatal period, with risk of ASD. Delivery complications such as fetal dis-tress, birth asphyxia, and placental insufficiency are all potentially associated with increased ASD risk (Hultman et al. 2002; Gardener et al. 2011), though associations with individual complica-tions are less consistent (Getahun et al. 2017). For neonatal complications, a range of factors have also been examined in association with ASD, with greater

complications, a range of factors have also been examined in association with ASD, with greater consistency for increased risk associated with low birth weight (Mann et al. 2010), preterm birth (Buchmayer et al. 2009), and potentially, complications relating to hypoxia (Gardener et al. 2011). Evidence suggests a com-bination of several of these factors in the prenatal and perinatal periods, leading to suboptimal birth, could additively be responsible for a sig-nificant association with ASD

leading to suboptimal birth, could additively be responsible for a sig-nificant association with ASD (Lyall et al. 2012). Impaired fetal development assessed at birth may reflect prenatal maternal obstetric complications, and both of these may be related to further upstream etiologic factors, including environ-mental insults.

**Folic Acid and Related Nutrients** The beneficial effects of folic acid supplement-ation in reducing neural tube defects are well-established, but the relationship of pre- and perinatal folic acid and multivitamin supplemen-tation on ASD outcome has been more recently suggested. Most studies evaluating the association between periconceptional intake of folic acid and ASD reported a reduced risk of ASD or autistic traits. Folic acid supplementation was shown to confer a greater risk reduction

of ASD or autistic traits. Folic acid supplementation was shown to confer a greater risk reduction among mothers and children with genetic susceptibility for less effi-cient folate metabolism (Schmidt et al. 2012). Additionally, recent studies report that high folic acid intake, particularly during the first trimester, reduced the risk of ASD due to air pollution and prenatal pesticide exposure (Schmidt et al. 2017; Goodrich et al. 2018). The evidence based on measured folate levels during

(Schmidt et al. 2017; Goodrich et al. 2018). The evidence based on measured folate levels during pregnancy and ASD risk is still unclear since studies have reported nonsignificant associations but concur-rent significant associations with folic acid sup-plementation (Braun et al. 2014a; Steenweg-de Graaff et al. 2014). A potential explanation for this lack of association with the measured levels could be that high folate levels later in pregnancy offer no protection against ASD, as suggested by

be that high folate levels later in pregnancy offer no protection against ASD, as suggested by three studies reporting protective effects only from higher folic acid intake and supplementation within the window of a few months before to about 6 weeks after conception (Schmidt et al. 2012; Suren et al. 2013; Bjork et al. 2017). Thus, there is a need for additional studies to identify the critical windows of exposure that link biologically measured folate to ASD.

**Other Prenatal Nutrients** Limited research has investigated other maternal dietary factors in association with ASD, though the importance of maternal diet in neuro-development is well-established. There is increas-ing interest in the role of vitamin D deficiency in the pathogenesis of ASD, given the role of vitamin D in immune system functioning and neurodevelopment. Two studies from Nordic countries, one that assessed clinical vitamin D deficiency in pregnancy and another which assessed the

one that assessed clinical vitamin D deficiency in pregnancy and another which assessed the level of 25[OH]D3, a biomarker of vitamin D exposure, in midpregnancy reported increased association with ASD and Social Responsiveness Scale (SRS) scores, respectively (Magnusson et al. 2016; Vinkhuyzen et al. 2018). Additionally, studies that measured 25[OH]D2 in maternal blood at the first and second trimesters, and in neonatal blood spots, reported increased odds of ASD diagnosis with low prenatal

trimesters, and in neonatal blood spots, reported increased odds of ASD diagnosis with low prenatal vitamin D levels (Chen et al. 2016; Vinkhuyzen et al. 2017; Fernell et al. 2015). Two studies examining prenatal iron intake reported a reduced risk of ASD with iron supplementation (Schmidt et al. 2014); however, reduction was also seen for mul-tivitamin intake with or without iron or folic acid (DeVilbiss et al. 2017). Maternal dietary intake of polyunsaturated fatty acids (PUFAs) has been

(DeVilbiss et al. 2017). Maternal dietary intake of polyunsaturated fatty acids (PUFAs) has been associated with reduced risk of ASD in one US cohort (Lyall et al. 2013), while a cohort study from Spain found that maternal seafood (including ocean fish) consumption, a key source for these fatty acids, was associated with fewer ASD symptoms as measured by the Childhood Asperger Syndrome Test (Julvez et al. 2016). However, an analysis of prenatal plasma levels of major classes of PUFAs, omega 6

et al. 2016). However, an analysis of prenatal plasma levels of major classes of PUFAs, omega 6 and omega 3, found an increase in autistic traits as measured by a shortened version of the SRS for the former and no association for the latter (Steenweg-de Graaff et al. 2016). Prenatal fish consumption or fish oil supplement use was not associated with ASD in another large Norwegian cohort study (Suren et al. 2013), demonstrating conflicting findings across the available studies. Continued research

et al. 2013), demonstrating conflicting findings across the available studies. Continued research into these and other dietary factors may be fruitful in identifying modifiable risk factors for ASD, as well as factors that inter-act with other ASD risk factors (Schmidt et al. 2017; Goodrich et al. 2018).

**Alcohol and Smoking** Both alcohol and tobacco smoke are known risk factors of adverse perinatal and neonatal out-comes. The current evidence shows a lack of association between prenatal exposure to tobacco and ASD. Analysis using national-level ASD monitoring data in the US found no overall asso-ciations and a suggestive increased relationship with higher-functioning ASD (Kalkbrenner et al. 2012), but a more recent meta-analysis using stud-ies from multiple countries showed null

et al. 2012), but a more recent meta-analysis using stud-ies from multiple countries showed null associa-tions (Rosen et al. 2015). There are fewer studies assessing the effect of prenatal alcohol exposure on ASD, but the most recent reports based on US and Danish data show null associations (Eliasen et al. 2010; Singer et al. 2017). For these lifestyle factors, underreporting is likely a major problem; furthermore, many of the studies have not ade-quately adjusted for confounders. Studies with

furthermore, many of the studies have not ade-quately adjusted for confounders. Studies with biomarkers and proper control for confounding are needed to fully resolve the potential impact of these substances on ASD.

**Environmental Chemicals** The Toxic Substances Control Act’s (TSCA) registry of chemicals created by the US Environ-mental Protection Agency (EPA) currently lists ~85,000 chemicals registered for commercial use, with new alternatives for problematic sub-stances added each year. Despite historical evi-dence of teratogenic and neurodevelopmental problems due to mercury and lead, only a fraction of these chemicals have been tested for adverse effects on neurodevelopment. Some of these chemicals

these chemicals have been tested for adverse effects on neurodevelopment. Some of these chemicals can cause downstream effects on fetal neurodevelopment through maternal hormonal or immune system-mediated pathways, whereas others can directly cross the placental barrier to affect the growing fetus. An increasing number of studies are focusing on exposure to these chemicals in association with ASD, given sugges-tive findings for other related outcomes.

**Air Pollution** Prenatal exposure to air pollution has emerged as a risk factor for ASD over the last decade. Several epidemiological studies have evaluated the risk from estimated levels of hazardous air pollutants (HAPs), criteria air pollutants (nitrogen dioxide (NO2), ozone, particulate matter less than 2.5 m (PM2.5), 10 m in diameter (PM10), metals such as lead and cadmium), and exposure to traffic-related pollution on ASD. The majority of recent studies have reported increases in risk

to traffic-related pollution on ASD. The majority of recent studies have reported increases in risk of ASD with higher levels of estimated air pollution or proxies for it (such as distance to highways), though evidence regarding which specific component(s) of pollu-tion are responsible for the observed association is far less consistent. In addition, recent studies have also started to explore modification of these effects by genetic variation.

The current epidemiological studies of HAPs and ASD have found moderately increased risk for ASD with industrial solvents. Maternal prenatal exposure to chlorinated solvents and some heavy metals (mercury, lead, chromium, manganese, nickel) are associated with increased odds of ASD (Windham et al. 2006; Kalkbrenner et al. 2010; Roberts et al. 2013; von Ehrenstein et al. 2014; Talbott et al. 2015). These reports also implicate several toxicants as potential risk factors for ASD, but only few

These reports also implicate several toxicants as potential risk factors for ASD, but only few (styrene, solvents, diesel particulates, mercury, and lead) have been repli-cated. The most recent research on air toxins reported elevated associations with vehicular emission-related air toxins and industrial solvents (Kalkbrenner et al. 2018). Recent studies have used complex statistical techniques and adjusted for co-pollutants in analysis but utilize exposure assessment generated by the US

and adjusted for co-pollutants in analysis but utilize exposure assessment generated by the US National Air Toxics Assessment, limiting the spatial and temporal interpretability of results.

Most US-based studies that assessed PM2.5 have reported that the levels of fine particulate matter are associated with a moderate increase in the risk of ASD. Higher levels of PM10, NO2, and ozone are also implicated, but results are less consistent across studies. Within the CHARGE study, the presence of a genetic variant near the MET gene locus, coupled with high NO2 expo-sure (Volk et al. 2014), increased the risk of ASD. In addition, increased copy number variation (CNV) burden, combined

increased the risk of ASD. In addition, increased copy number variation (CNV) burden, combined with elevated exposure to ozone, also resulted in much higher risk of ASD (Kim et al. 2017). Research using samples from other states have shown similar elevations in the risk for PM2.5, and PM10, ozone, and nitrogen oxides (Raz et al. 2015; Talbott et al. 2015). These studies used EPA air monitoring data-based dispersion models, traffic density, distance to roadways, and estimates based on residential

dispersion models, traffic density, distance to roadways, and estimates based on residential history as well as land-use regression models.

In contrast to US-based studies, the evidence is more limited from other countries. A recent twin study that assessed nitrogen oxides and PM10 based on road traffic estimated dispersion model-ing did not find any significant associations with ASD (Gong et al. 2014). Similarly, one large study based on four European cohorts that mea-sured these toxicants and PM2.5 based on land-use regression models (Guxens et al. 2016) also found no significant association with autistic traits. A recent study in

(Guxens et al. 2016) also found no significant association with autistic traits. A recent study in Israel that assessed NO2 based on an optimized dispersion model found increased ASD risk for postnatal exposure but decreased risk for early prenatal exposure (Raz et al. 2018). The variation between US and international stud-ies may stem from differences in outcome assess-ment, residual confounding in the US due to social factors, and the different mixtures of pollutants between nations. A recent

in the US due to social factors, and the different mixtures of pollutants between nations. A recent review and commen-tary concluded that though there was potential for residual and unmeasured confounding in studies of air pollution and ASD, the likelihood of a true increase in risk associated with this factor was strong (Weisskopf et al. 2015). However, the focus of this discussion was primarily on confounding factors that tend not to change much over time intervals when air pollution changes.

on confounding factors that tend not to change much over time intervals when air pollution changes. Further investigation of confounding is warranted.

Researchers have suggested that immune activation, neuroinflammation, and oxidative stress could be potential pathways for air pollution and its components to affect the developing brain and ultimately impact ASD risk. Although there is explosive growth in the quantity and quality of air pollution-related research, further work is needed. Future epidemiological studies need to consider exposure measurement limitations and residual confounding from SES, and factors that may vary in concert with

limitations and residual confounding from SES, and factors that may vary in concert with air pollution including mete-orologic and other variables develop methods to model pollutant mixtures, and identify critical windows of exposure relevant to the outcome, as well as further consider potential genetic interactions.

**Pesticides** The toxic effects to the human body from acute pesticide exposures are well known, and work has also demonstrated adverse effects on neuro-development. Prenatal exposure to organophos-phate pesticides (OP), a class of insecticides with wide-ranging agricultural uses, has been associ-ated with abnormal reflexes (Engel et al. 2007), poorer mental development (Eskenazi et al. 2007) and a range of behavioral, cognitive, and neuro-logic deficits across many cohorts and study

2007) and a range of behavioral, cognitive, and neuro-logic deficits across many cohorts and study populations (Munoz-Quezada et al. 2013; Gonzalez-Alzaga et al. 2014; Rauh et al. 2015). These exposures can be measured as individual metabolites in maternal biosamples, or through residential proximity to agricultural areas, which has been validated using air monitoring of pesti-cide applications (Wofford et al. 2014).

A recent study used both exposure sources to assess asso-ciations with ASD traits and found that only pre-natal urine total dialkyl phosphates (an OP metabolite) were associated with an increase in ASD traits as measured by the SRS (Sagiv et al. 2018). However, two other studies showed no associations with total OP metabolites and SRS scores (Furlong et al. 2014; Millenson et al. 2017). Only a few studies have examined associations with clinically diagnosed ASD: one, using prena-tal

Only a few studies have examined associations with clinically diagnosed ASD: one, using prena-tal measurements of OP metabolites, found no statistically significant associations in a very small study reporting preliminary findings (Philippat et al. 2018), although nonsignificant sex differences, with a higher risk among girls, but not boys, were noted.

The first study to exam-ine ASD in association with OPs and other agricul-tural pesticides using residential proximity reported significantly elevated odds of ASD associated with exposures in the top quartile for bifenthrin, a pyrethroid pesticide, and organophosphates (Roberts et al. 2007). Another study using proxim-ity to agricultural pesticide applications found ele-vated risk for ASD, which was clinically confirmed by standardized diagnostic instruments. A significantly elevated risk was also

clinically confirmed by standardized diagnostic instruments. A significantly elevated risk was also noted for third trimester exposure to pyrethroids and second-trimester exposure to chlorpyrifos, the most commonly used agricultural OP pesticide (Shelton et al. 2014). Chlorpyrifos has been banned of neurodevelopmental harm, and recently the U.S. EPA proposed to revoke tolerances for residues in food, which would amount to a ban on agricultural uses, but subsequently reversed its position and

food, which would amount to a ban on agricultural uses, but subsequently reversed its position and announced there would be no such cancellation. In August 2018, EPA was ordered to finalize the ban by a U.S. Circuit Court of Appeals. In the meantime, chlorpyrifos is still being used in agri-culture. Moreover, a recent study reported an inter-action between exposure to these pesticides in pregnancy and folic acid, with the OP-related increased risk confined to those having low folic acid intake

and folic acid, with the OP-related increased risk confined to those having low folic acid intake (Schmidt et al. 2017); this interaction suggests that high folic acid may protect against the neurodevelopmental toxicity of pesticides, though replication of the finding is needed.

Another class of pesticides, organochlorines (OC), has also been examined in association with ASD. In the Roberts et al study based on residential proximity to agricultural pesticides (mentioned above), several OC pesticides were significantly associated with ASD (Roberts et al. 2007). In two studies using prenatal biomarkers of OC pesticides, results have been conflicting. Maternal prenatal serum concentration of one OC pesticide, trans-nonachlor, was associated with more ASD symptoms in a

concentration of one OC pesticide, trans-nonachlor, was associated with more ASD symptoms in a Cincinnati-based cohort study (Braun et al. 2014b), but a California-based study examining risk of diag-nosed ASD (Lyall et al. 2017) found no association.

Considering that toxicity of pesticides has been known for a long time, surprisingly few studies have evaluated this exposure with ASD. Addi-tional research is needed to clarify and replicate existing results and should consider the potential for exposure misclassification due to short half-lives of some OP pesticide metabolites, use sensi-tive and objective exposure measurement proxies, continue to explore time windows of sensitivity, and consider the potential effect modification of pesticides

to explore time windows of sensitivity, and consider the potential effect modification of pesticides from other environmental and genetic factors.

**Endocrine-Disrupting Chemicals** Endocrine-disrupting chemicals (EDCs) represent a class of substances (both persistent and nonper-sistent chemicals) that interfere with the human endocrine system. Though some of these chem-icals especially persistent EDCs are banned or have regulated use, the persistent nature of certain classes means that exposure is still relevant. As they are ubiquitously present in the environment, these substances have been studied for their effects on multiple

present in the environment, these substances have been studied for their effects on multiple neurodevelopmental outcomes over the last two decades.

OC pesticides, described above, are also known for their endocrine disrupting properties. Other EDC compounds examined in association with ASD include polychlorinated biphenyls (PCBs), polybrominated diphenyl ethers (PBDEs), phthalates and bisphenol A (BPA). Two US and two international studies have eval-uated the risk of ASD or measures of ASD symp-toms in association with prenatal exposure to PCBs, but findings are contradictory. In a small pilot study, the sum of PCBs evaluated

exposure to PCBs, but findings are contradictory. In a small pilot study, the sum of PCBs evaluated (Cheslack-Postava et al. 2013) was associated with an increased risk of ASD. Another study that mea-sured 24 PCBs along with other EDCs in maternal blood reported inverse association with PCB-178 and SRS scores (Braun et al. 2014b). A German cohort study that summarized PCB congeners using the World Health Organization’s defined toxic equivalency factors reported that PCB levels were associated

Health Organization’s defined toxic equivalency factors reported that PCB levels were associated with lower autistic mannerisms in their overall sample, and specifically among girls (Nowack et al. 2015). The most recent report measuring PCBs in second-trimester serum samples reported elevated risk of ASD with two congeners (PCB 153 and PCB 138/158) (Lyall et al. 2017), but further clarification of the role of PCBs in ASD is needed.

Though evidence links PBDE exposure to other adverse neurodevelopmental outcomes (Eskenazi et al. 2013; Chen et al. 2014), findings for ASD are limited. Only two studies have exam-ined prenatal levels of PBDE in association with ASD, with conflicting findings. One study showed a marginally significant positive relation-ship with ASD symptoms as measured by the SRS (Braun et al. 2014b), and another found that elevated levels of certain PBDE congeners (PBDE-100, PBDE-153) were inversely associ-ated

that elevated levels of certain PBDE congeners (PBDE-100, PBDE-153) were inversely associ-ated with ASD diagnosis (Lyall et al. 2017; Traglia et al. 2017). In the latter study, there was also evidence of sexual dimorphism, with suggested, though not statistically significant, increases in risk with higher PBDE levels for girls and effects in the inverse direction for boys. It is possible that the inverse associations may be due to maternal and/or fetal genetic factors related to PBDE metabolism,

associations may be due to maternal and/or fetal genetic factors related to PBDE metabolism, as suggested in a follow-up to this study (Traglia et al. 2017).

The first study suggesting a link between phthalates and ASD was based on presence of PVC flooring in parents’ bedroom (Larsson et al. 2009). However, in a study using measurements of phthalates in household dust, no association was found with ASD, but associations were observed with several co-morbidities, including hyperactivity-impulsivity and inattention (Philippat et al. 2015). Only two studies have evaluated prenatal phthalate concentrations in biomarkers in association with ASD phenotype;

have evaluated prenatal phthalate concentrations in biomarkers in association with ASD phenotype; one reported increased risk of SRS-measured ASD symptoms with increasing concentrations of low-molecular-weight phthalate metabolite concentrations in third-trimester urine (Miodovnik et al. 2011), and the other found no associations (Braun et al. 2014b). Few studies have examined BPA or perfluorinated compounds in association with ASD, and the results are incon-sistent. Of note, phthalates and BPA

compounds in association with ASD, and the results are incon-sistent. Of note, phthalates and BPA are short-lived compounds, in comparison with PBDEs, PCBs, perfluorinated compounds and OC pesti-cides, all of which are persistent compounds with half-lives in the human body of months or years. Capturing exposures through the use of biologic markers is a greater challenge in the studies of compounds that are quickly excreted (phthalates, BPA, and the OP pesticides).

**Other Environmental Chemicals** Like lead, methylmercury is a well-established neurotoxin with the primary source of human exposure through seafood consumption, but no associations with ASD have been described (van Wijngaarden et al. 2013; McKean et al. 2015). Several studies have suggested that mercury in air pollution is associated with an increased risk of ASD (Windham et al. 2006; Roberts et al. 2013; Lam et al. 2016). Although there are many reports on the differences in heavy metal

et al. 2013; Lam et al. 2016). Although there are many reports on the differences in heavy metal levels between existing ASD cases and neurotypical controls, the primary hypothesis tested in these studies involves metabolic clear-ance of the toxicant rather than a causal mecha-nism of ASD (e.g., measurement of prenatal exposure), limiting interpretations. Innovations in this area, including the potential use of shed deciduous teeth or other novel biomatrices, may aid measurement of low-level

potential use of shed deciduous teeth or other novel biomatrices, may aid measurement of low-level prenatal exposures (Arora et al. 2017), but continued work is required.

**Gene Environment Interactions** ASD is a complex neurodevelopmental condition, and evidence suggests significant environmental and genetic contributions to its etiology. However, because of the high degree of heterogeneity in both the environmental and genetic factors, it is possible that the combined effect of multiple genes and environmental factors contribute to the etiology over and beyond the main effects of individual genes or specific environmental factors. Over the last decade, there

the main effects of individual genes or specific environmental factors. Over the last decade, there is a growing interest in evaluating gene-by-environment (GxE) interaction in ASD. Only a few studies have investigated GxE interaction in ASD to date. The first study reported significantly higher risk of ASD for children of mothers who did not take prenatal vitamins and had functional genetic var-iants involving inefficient conversion to folate or transmethylation in one-carbon metabolism (Schmidt

involving inefficient conversion to folate or transmethylation in one-carbon metabolism (Schmidt et al. 2012). As mentioned before, mothers with the CC variant of the MET gene and high air pollution exposure had a higher risk of ASD compared to those with low pollution exposure and both CG and GG genotypes (Volk et al. 2014). Another study reported that children with ASD-associated CNVs and mothers with a history of infection during pregnancy had ele-vated ASD symptom severity compared to those

with a history of infection during pregnancy had ele-vated ASD symptom severity compared to those without these factors (Mazina et al. 2015). CNV duplication and higher total CNV burden have also been shown to interact with ozone exposure in pregnancy until the second year of life to increase the risk of ASD (Kim et al. 2017). ASD-associated CNVs in children have been linked with other non-pollutant prenatal exoge-nous stressors as well. A recent study observed that exposure to first-trimester

prenatal exoge-nous stressors as well. A recent study observed that exposure to first-trimester diagnostic ultra-sound interacted with the presence of CNVs in autistic male children, increasing ASD symptom severity as compared to autistic male children with CNVs and no first-trimester ultrasound expo-sure (Webb et al. 2017). Though of interest, the study of GxE in ASD is hampered by the need for both genetic and environmental data in the same study. In addition, as the potential mechanisms and

both genetic and environmental data in the same study. In addition, as the potential mechanisms and possible interac-tions increase, large sample sizes are necessary to accurately estimate associations. Future research harnessing collaborations across projects and linking datasets is expected to address these issues and expand the consideration of interactions in ASD (Hertz-Picciotto et al. 2018).

**Conclusions and Future Directions** The complex and substantial heterogeneity in ASD phenotype and etiology makes studying suspected environmental factors challenging. Because ASD is a rare condition in the general population, few large-scale, prospective, population-based studies investigating environ-mental factors from preconception to diagnosis have been conducted. Replication of results for specific risk factors, clarification of mechanisms, and consideration of interactions are all key

for specific risk factors, clarification of mechanisms, and consideration of interactions are all key areas that studies of environmental risk factors for ASD will need to address in the future. However, con-siderable progress has been made in the past decade in our understanding of the role of the environment in ASD. This work has highlighted air pollution, parental age, the maternal intrauter-ine environment, various immune-related factors, and metabolic conditions as highly replicated risk

environment, various immune-related factors, and metabolic conditions as highly replicated risk factors for ASD and has provided suggestive find-ings warranting further consideration of other factors.

Several of the environmental risk factors discussed here are also associated with other adverse neurodevelopmental outcomes. Many substances cause multiple pathophysiological effects, and a better understanding of how com-mon exposures can lead to diverse outcomes is needed. Though risk factors are often examined independently, exposures do not act in isolation. Considering the combined effects of multiple exposures, including not only GxE but also envi-ronment x environment interactions (to

of multiple exposures, including not only GxE but also envi-ronment x environment interactions (to include nutrition) and exposure to complex chemical mix-tures, may prove fruitful in gaining a better under-standing of pathways. Additionally, incorporating objective biomarkers of exposure during biologi-cally relevant time windows of neurodevelopment may serve this aim of clarifying mechanisms. Gold-standard biological measures of exposures, especially those that are not transient, could

Gold-standard biological measures of exposures, especially those that are not transient, could supplement survey measures and improve the validity and precision of findings.

Another consideration for future work includes careful attention to timing. The prenatal period represents a key window of neurodevelopmental susceptibility, and some exposures may have even narrower windows of effect. Longitudinal preg-nancy cohorts yield some of the richest sources of viable data, though these have been rare in ASD due to practical issues in assembling large enough study samples. One approach to mitigate this has been the use of high-risk pregnancy cohorts, which follow

One approach to mitigate this has been the use of high-risk pregnancy cohorts, which follow mothers who have already given birth to a child with ASD through a subsequent pregnancy (Newschaffer et al. 2012) – these stud-ies have been critical in allowing for prospective investigation of a wide range of environmental risk factors for ASD and incorporation of bio-markers. However, sample sizes tend to be small, and the extent to which risk factors may differ in these families with perhaps

tend to be small, and the extent to which risk factors may differ in these families with perhaps increased genetic loading is unclear.

ASD clearly has a complex etiology, with mul-tiple risk factors playing significant roles. Further investigations, using prospective design, large sample sizes, biological measures, and considering combined exposures, will be key to furthering our understanding of etiology and underlying mechanisms.

### Epicanthic Fold **Synonyms** Epicanthal fold; Epicanthus; Palpebronasal fold; Plica palpebronasalis  **Definition** A skin fold of the upper eyelid that covers the inner corner (canthus) of the eye. It is seen nor-mally in infants before the bridge of the nose develops and in East Asian people. It can also be a characteristic feature of some medical condi-tions, such as Down syndrome, fetal alcohol syn-drome, Turner syndrome, Williams syndrome, and Noonan syndrome.

### Epidemiology **Definition** Epidemiology is a multidisciplinary field of study that focuses on describing, investigating, and pre-venting disease in populations. Studying diseases on the population level creates a level of complex-ity not seen on the individual level. In order to understand the movement and patterns of disease in a population, epidemiologists often need to be well versed in biology (disease transmission, symptoms, treatment), social sciences (population dynamics, behavior),

(disease transmission, symptoms, treatment), social sciences (population dynamics, behavior), statistics (analysis of population level data, visualizing trends and patterns), and rigorous scientific methods (study design, causal pathways). Epide-miology employs a scientific, evidence-based approach to investigations of health and disease and thus is sometimes referred to as the scientific arm of public health.

**Historical Background** The term “epidemiology” is of Greek origin and means “the study of what is upon the people.” One of the first epidemiologists was thought to be the Greek physician Hippocrates. Besides coining the terms “epidemic” and “endemic” in approxi-mately 400 B.C., he also noted the association between yellow fever and malaria and swamps and advocated their drainage. Several other notable epidemiologists included John Graunt (1620–1674), who was the first to use life tables to

notable epidemiologists included John Graunt (1620–1674), who was the first to use life tables to support and refute theories on certain diseases; James Lind (1716–1794), who used an experimental study design to determine that citrus could cure scurvy in sailors; and Ignaz Semmelweis (1818–1865), who cut maternal mortality rates by more than ninefold over a 6-year time period by requiring that physicians in his ward wash their hands with chlorinated lime between patient examinations (Merril and

in his ward wash their hands with chlorinated lime between patient examinations (Merril and Timmreck 2006). Perhaps the most notable epidemiologist, though, is John Snow (1813–1858), whose break-through work on cholera in London helped develop modern epidemiology as it is known today. Snow gathered data on the incubation period of cholera and time from infection to death and even plotted mortality events on maps. Not only did he study the disease extensively, he also identified a potential cause

events on maps. Not only did he study the disease extensively, he also identified a potential cause of illness – con-taminated water. He found that a brewery with its own water source was protected from cholera, while approximately 500 people died over a 10-day span within close proximity to the Broad Street water pump. This led to the famous removal of the Broad Street pump handle. Years later, John Snow conducted one of the first major epidemio-logic studies in a randomized setting. Two

John Snow conducted one of the first major epidemio-logic studies in a randomized setting. Two com-panies were competing to supply water to individuals in London. The first company, Lam-beth Water Company, took water from the Thames River from a relatively unpolluted upstream source. The second company, Southwark and Vauxhall Water Company, drew water contami-nated with the city’s effluent. Both companies ran water pipes to the same areas, and thus citizens randomly chose one company or the other

ran water pipes to the same areas, and thus citizens randomly chose one company or the other to obtain water (some citizens did not even recall which company they had chosen). Snow was able to obtain the addresses of those who died of cholera and then determine what water company supplied water to those households. In this way, he was able to demonstrate that water from the Lambeth Water Company was far safer than the fecally contaminated water provided by the Southwark and Vauxhall Water

was far safer than the fecally contaminated water provided by the Southwark and Vauxhall Water Company. This seminal work, conducted in the mid-1800s, was produced at a time when most physicians still believed in the same miasma, or bad air, that Hippocrates had believed in over 2,000 years prior (Snow 1855).

Since Snow’s time, modern epidemiology has blossomed. In 1905, a school of tropical medicine was created at the University of London, and in 1916, Johns Hopkins University created the first school of public health. The Centers for Disease Control was created in 1

Infantile spasms are associated with multiple etiologies and represent a distinct subgroup of epilepsies with poor cognitive and social outcomes. Infantile spasms is an age-specific epilepsy syndrome that occurs between 3 and 18 months with a peak age of presentation between 4 and 8 months of age (Zupanc 2009). The seizure consists of a sudden flexion or extension of the proximal and truncal muscles which lasts for approximately 0.2–2 s. They are more prolonged than a myoclonic jerk (<100 ms) but

which lasts for approximately 0.2–2 s. They are more prolonged than a myoclonic jerk (<100 ms) but less sustained than a tonic seizure (few seconds to minutes). Frequently, they are associated with high-voltage abnormalities on the interictal EEG that have been called hypsarrhythmia. Coincident intellectual retardation or regression of neurodevelopment in infantile spasms is common. The risk of developing autism after having infantile spasms is approximately 46% but can be as high as 69% in

developing autism after having infantile spasms is approximately 46% but can be as high as 69% in those with infantile spams and significant associated brain lesions. Dravet syndrome is a genetically determined infantile epileptic encephalopathy mainly caused by de novo mutations in the SCN1A gene (Scheffer et al. 2009). Progressive decline or plateau in development occurs by 1–4 years of age with intellectual disability and an autism phenotype commonly present especially in those with greater

intellectual disability and an autism phenotype commonly present especially in those with greater than five seizures per month (Wolff et al. 2006). There is emerging evidence that vaccine encephalopathy, characterized by the appearance of seizures and regression in infants following vaccination, may be secondary to SCNA1 gene mutations in these infants, suggesting that vaccine encephalopathy could, in fact, be a genetically determined epileptic encephalopathy (Berkovic et al. 2006). A

could, in fact, be a genetically determined epileptic encephalopathy (Berkovic et al. 2006). A controversial example of an epileptic encephalopathy that has been linked to ASD is Landau-Kleffner syndrome (LKS), an acquired aphasia in association with an epileptiform EEG with spikes, sharp waves, or spike and wave discharges that are usually bilateral and occur predominantly over the temporal regions (Landau and Kleffner 1998). On a continuum with Landau-Kleffner syndrome is continuous

regions (Landau and Kleffner 1998). On a continuum with Landau-Kleffner syndrome is continuous spikewaves duringslow-wave sleep (CSWS), an epileptic encephalopathy associated with the EEG pattern of electrical statusepilepticus duringslow-wave sleep (ESES), various seizure types, and cognitive, motor, and behavioral disturbances (Tassinari et al. 2009). Continuous spike waves during slow-wave sleep and Landau-Kleffner syndrome are sleep-related epilepticencephalopathies with common clinical

sleep and Landau-Kleffner syndrome are sleep-related epilepticencephalopathies with common clinical features including seizures, regression, and epileptiform abnormalities that are activated by sleep (Nickels and Wirrell 2008). In continuous spike waves during slow-wave sleep, there is a regression in global skills, while in Landau-Kleffner syndrome, the primary clinical manifestation is a regression of language. Autistic regressionwith anepileptiform EEG is the terminology used to describe the

of language. Autistic regressionwith anepileptiform EEG is the terminology used to describe the association of an epileptiform EEG in children with autistic regression, e.g., those in whom both language and social skills are lost. This group of children should be differentiated from those with LKS. In this group of children, the language and social skill loss occurs earlier, before the age of 2, as compared to those with LKS in which it occurs usually after age 3 years. In addition, the

of 2, as compared to those with LKS in which it occurs usually after age 3 years. In addition, the children with autistic regression and an epileptiform EEG usually do not have frequent spikes on the EEG and rarely have the ESES EEG pattern common in LKS. The importance of differentiating children with autism, regression in language and social skills, and epileptiform EEG from those with LKS is that there is no evidence that the treatments used in LKS, such as the use of steroids or surgical

that there is no evidence that the treatments used in LKS, such as the use of steroids or surgical interventions, are effective interventions for this group of children (Tuchman 2009).

Pathophysiology The word “epileptogenesis” in pediatrics refers to dynamic processes which constitute the appearance and natural history of epilepsy. The appearance of autism in epilepsy patients and epilepsy in autism patients suggests that a final common set of neural pathways and molecular processes are shared by both autism patients and epilepsy patients. The understanding of the development of epilepsy, progression of epilepsy, and interaction between epileptic seizures and cerebral

of epilepsy, progression of epilepsy, and interaction between epileptic seizures and cerebral maturation will be critical to our knowledge of epileptogenesis in autism epilepsy patients. Mechanisms responsible for epileptogenesis of partial seizures may be shared among autism and nonautism patients. Models of partial epilepsy reveal a characteristic course in the development of isolated epileptogenic lesions (Thom et al. 2010). Children under 10–11 years of age tend to have epileptiform

lesions (Thom et al. 2010). Children under 10–11 years of age tend to have epileptiform discharges focally in the centrotemporal or centroparietal regions (Chez et al. 2006). Thus, mechanisms responsible for focal epilepsy may be applicable to younger children with autism/epilepsy. First, a localized structural or molecular change occurs in the region of brain tissue which in itself may not cause seizures. Reorganization of synaptic inputs with altered neural integration ensues, which, in many

seizures. Reorganization of synaptic inputs with altered neural integration ensues, which, in many cases, change the regional balance to excessive excitation and pathologic synchronization of action potential firing. Localized interictal EEG spikes occur in this region, and later, in most cases, spontaneous seizures are seen emanating from the site. The kindling model of epilepsy demonstrates the process of partial epileptogenesis. Kindling is a process by which initially subconvulsive

the process of partial epileptogenesis. Kindling is a process by which initially subconvulsive electrical stimulus to a brain region, such as the amygdala, is repeated once a day for 21 days. An initial subconvulsive electrical stimulus may only evoke an electrographic discharge with little change in the animal’s behavior (Racine et al. 1975). The repeated electrical stimulus will evoke first a behavior arrest (class I seizure) and then stepwise at day 21 evoke a secondarily generalized

a behavior arrest (class I seizure) and then stepwise at day 21 evoke a secondarily generalized tonic-clonic seizure (class V seizure). An animal is considered fully kindled when the same stimulus evokes a secondarily generalized tonic-clonic seizure over three consecutive days. Electrophysiologic and structural analyses of kindled animals suggest permanent alterations to rodent limbic cortex which parallels changes seen in human temporal lobe epilepsy (Morrell and de Toledo-Morrell 1999). The

parallels changes seen in human temporal lobe epilepsy (Morrell and de Toledo-Morrell 1999). The genetic program activated over a period of time includes three phases: (1) expression of immediate early genes and apoptosis genes, (2) expression of secondary transcriptional regulatory proteins, and (3) expression of tertiary or quaternary target genes (neurotrophins, guidance cue genes, etc.) in response to transcriptional regulatory proteins and electrical activity. The end result of this

in response to transcriptional regulatory proteins and electrical activity. The end result of this genetic reprogramming is synaptic reorganization and epileptogenesis. The final common pathway here seems to be recurrent excitatory networks. Kindling causes epileptogenesis by a variety of possible mechanisms including (1) reorganization of axons/synaptic connections, (2) alterations in AMPA and NMDA receptors, (3) enhanced release of glutamate by neurosecretory mechanisms, and (4) alteration of

receptors, (3) enhanced release of glutamate by neurosecretory mechanisms, and (4) alteration of inhibition via kainic acid receptor activation (Wang et al. 2010).

Shared Molecular Pathophysiology Between Autism and Epilepsy Genetic Components The standard hypothesis to explain the overlap of autism and epilepsy is that an altered balance between excitation and inhibition is one biological mechanism for both diseases; thus, the disturbance in the development of either cortical projection neurons or interneuron maturation would tip over this delicate balance. Giving the fact that autism co-occurs with numerous neurodevelopmental disorders and the

balance. Giving the fact that autism co-occurs with numerous neurodevelopmental disorders and the complexity of synaptogenesis and function, it is not surprising that there are multiple molecules and signaling pathways associated with the pathogenesis of autism. Subtle perturbations or alterations in any of these molecules critical in neurodevelopment, synaptogenesis, and synaptic function may cause defects in the downstream common biological pathways within brain circuits contributing to ASD

defects in the downstream common biological pathways within brain circuits contributing to ASD pathogenesis (Geschwind and Levitt 2007). The genetic architecture of autism includes at least two distinct genetic mechanisms: rare, private (de novo) single-gene mutations that may have a large effect in causing ASD and inherited, common functional variants of a combination of genes, each having a small to moderate effect in increasing ASD risk (Abrahams and Geschwind 2008; O’Roak and State 2008;

to moderate effect in increasing ASD risk (Abrahams and Geschwind 2008; O’Roak and State 2008; Veenstra-VanderWeele and Cook 2004; Weiss et al. 2009). Rare point mutations range from ASD risk genes encoding numerous synaptic proteins (such as contactin-associated protein-like 2, CNTNAP2; SH3 and multiple ankyrin repeat domains 3, SHANK3; and neuroligin-3, NLGN3) to gains or losses of DNA segments, termed copy number variation (e.g., 16p11.2 and 15q11-q13), and to gross chromosomal

DNA segments, termed copy number variation (e.g., 16p11.2 and 15q11-q13), and to gross chromosomal rearrangements that are estimated to occur in about 7% of autism cases (Abrahams and Geschwind 2008). In epilepsy, genetic advances have identified ion channel genes as the major category of epilepsy susceptibility genes, although nonion channel genes have also been identified to be associated with epilepsy (Suzuki et al. 2004). These ion channels include both voltage-gated and ligand-gated ion

epilepsy (Suzuki et al. 2004). These ion channels include both voltage-gated and ligand-gated ion channels. The voltage-gated ion channels include sodium channels like SCN1A, SCN2A, and SCN1B; potassium channels like KCNQ2 and KCNQ3; and calcium channels like CACNA1A (Glasscock et al. 2007) and CACNB4 (Escayg et al. 2000). The ligand-gated ion channels include GABAA receptors (Kang and Macdonald 2009) and nicotinic acetylcholine receptors (Steinlein and Bertrand 2010). Mutations of these ion

2009) and nicotinic acetylcholine receptors (Steinlein and Bertrand 2010). Mutations of these ion channel genes that either directly or indirectly enhance excitatory neurotransmission or reduce inhibitory neurotransmission increase brain hyperexcitability and thereby predispose patients to seizures. Rare copy number variations, already implicated in ASD (Weiss 2009), have been noted in patients with idiopathic generalized epilepsy (IGE) (Carmona-Mora and Walz 2010; Sisodiya and Mefford 2011).

with idiopathic generalized epilepsy (IGE) (Carmona-Mora and Walz 2010; Sisodiya and Mefford 2011). IGEs are a well-defined group of epilepsies, accounting for a third of all cases of epilepsy in the general population and an even higher proportion in children (1). IGEs usually begin in childhood, are genetically determined, and have no structural or anatomic cause (Benbadis 2005). However, the prevalence of this genetic mechanism in IGEs remains to be established. There are a number of

the prevalence of this genetic mechanism in IGEs remains to be established. There are a number of mutations or variants in GABAA receptors that have been associated with epilepsies of various phenotypes (Kang and Macdonald 2009; Macdonald et al. 2010). These mutations/variants associated with epilepsies have been reported in α1, β3, γ2, and δ subunits. Most of the mutations have autosomal dominant inheritance and have been associated with epilepsy syndromes comprised of pure febrile seizures

inheritance and have been associated with epilepsy syndromes comprised of pure febrile seizures (FS), mixed afebrile and febrile seizures such as CAE and FS, generalized epilepsy with febrile seizures plus (GEFS+) syndrome, Dravet syndrome, and juvenile myoclonic epilepsy (JME). These mutations include missense, non-sense, and intronic splice donor site mutations. Most of the mutations are associated with fairly mild phenotypes like simple febrile seizures and CAE which are outgrown with age.

with fairly mild phenotypes like simple febrile seizures and CAE which are outgrown with age. In summary, defects in multiple genes and molecules may lead to alterations in the final common neural pathways involved in the pathogenesis of epilepsy and autism. Among all these genetic and molecular pathways, impaired GABAergic signaling is a prominent pathology underlying the pathogenesis of both autism and epilepsy.

Abnormal Brain Development Both autism and epilepsy have abnormal brain development. But there are many more studies on brain development of autism than on epilepsy. Cross-sectional magnetic resonance imaging (MRI) studies have long hypothesized that the brain in children with autism undergoes an abnormal growth trajectory that includes a period of early overgrowth. The abnormalities in autism could be broad including frontal and temporal lobes, amygdala, basal ganglia, corpus callosum,

could be broad including frontal and temporal lobes, amygdala, basal ganglia, corpus callosum, parietal lobe, and cerebellum (Allen and Courchesne 2003). In addition to the identification of brain overgrowth in autistic brains (Courchesne 2002; Courchesne et al. 2003), Courchesne and his group also demonstrated the first direct evidence with MRI study that anatomic abnormalities within the limbic system exist from the earliest years of autism and change throughout development and up through

system exist from the earliest years of autism and change throughout development and up through middle age. It is worth noting that cerebellar abnormality is repeatedly reported in most specimens examined, thus challenging the view that the function of cerebellum is exclusively motor coordination (Allen and Courchesne 2003). Interestingly, gene mutations in GABRA6 (Dibbens et al. 2009) were also associated with epilepsy. The transcript of a6 subunit was reported to be confined to the postnatal

associated with epilepsy. The transcript of a6 subunit was reported to be confined to the postnatal cerebellum (Laurie et al. 1992). This may suggest that this subunit may exist in other unknown brain areas or argue against the role of cerebellum simply being motor coordination. There are shared neuropathologies underlying ASD and epilepsy (Taylor et al. 1999; Wegiel et al. 2010). SPECT/PETscans of autism/epilepsy patients and pediatric patients with medication-resistant focal epilepsy caused by

autism/epilepsy patients and pediatric patients with medication-resistant focal epilepsy caused by focal cortical dysplasia show similar areas of abnormalities in the frontal or temporal cortex (Sasaki et al. 2010). The discrete focal areas of hypometabolism suggest similar cellular abnormalities in the cortices of both types of patients (Sasaki et al. 2010; Taylor et al. 1999; Wegiel et al. 2010). The initial overgrowth in autism patients is associated with focal developmental abnormalities.

The initial overgrowth in autism patients is associated with focal developmental abnormalities. The focal abnormalities include subependymal nodular dysplasias, subcortical and periventricular heterotopias, dysplasias including either cell loss or increased numbers of poorly differentiated neurons with disturbed lamination in neocortex, archicortex, dentate gyrus, cornu ammonis, and cerebellar cortex (Taylor et al. 1999; Wegiel et al. 2010). In autism brain, tuber-like structures as seen in

cortex (Taylor et al. 1999; Wegiel et al. 2010). In autism brain, tuber-like structures as seen in tuberous sclerosis are detected in cortical and subcortical regions such as the basal ganglia (Numis et al. 2011). Older autopsy specimens tend to be associated with cell loss and disturbed cortical minicolumns. Posterior regions of the corpus callosum are also reduced in size in autism in a study of 3- to 42-year-olds (Schumann et al. 2010). MRI studies of older ASD children suggested that

of 3- to 42-year-olds (Schumann et al. 2010). MRI studies of older ASD children suggested that altered volumes of caudate nuclei, hippocampi, amygdale, and corpus callosum are associated with higher rates of epilepsy and lower sensory response rates (Bloss and Courchesne 2007; Brambilla et al. 2003; Schumann et al. 2004, 2010). In conclusion, these recent MRI and neuropathology observations suggest abnormal regulation of brain growth in autism: overgrowth early in life followed by abnormally

abnormal regulation of brain growth in autism: overgrowth early in life followed by abnormally slowed growth in some regions, but premature arrest of growth/poor differentiation followed by cell loss in others. The role of pathologic neural activity such as interictal epileptiform discharges (IEDs) and seizures in the developing brain of children with ASD is less clear. Evidence from human epilepsy and ASD patients indicates that there is abnormal and equivalent histology in human mesial

epilepsy and ASD patients indicates that there is abnormal and equivalent histology in human mesial temporal sclerosis and ASD hippocampi (Blumcke et al. 2009). These changes include substantial granule cell loss and architectural abnormalities like granule cell dispersion, ectopic neurons or clusters of neurons in the molecular layer, or bi-lamination (Blumcke et al. 2009). However, the contribution of abnormal brain development and neural activity in IGEs has just started to draw attention.

of abnormal brain development and neural activity in IGEs has just started to draw attention. For example, the knock-in mice harboring GABRG2 (R43Q) is a mutation associated with febrile seizures and childhood absence epilepsy. Activation of the mutant allele GABRG2 (R43Q) during early development increased the seizure susceptibility, and inactivation of the mutant allele would decrease the seizure susceptibility. These data suggest that disruption of the physiological effects of GABAA

seizure susceptibility. These data suggest that disruption of the physiological effects of GABAA receptors during the sensitive developmental epochs in fetal and neonatal/infantile life may compromise the developmental processes that are crucial for normal brain development and facilitate the development of epilepsy (Chiu et al. 2008). This may underlie why patients carrying GABAA receptor subunit mutations have mental compromise ranging from mild learning difficulty to mental retardation in

mutations have mental compromise ranging from mild learning difficulty to mental retardation in addition to seizures and autism such as those seen in Dravet syndrome (Li et al. 2011).

Abnormal GABA Receptor and Excitatory Receptors in Autism The balance of excitatory and GABA neurotransmission throughout brain development determines the final trajectory of neural pathways responsible for cognitive and behavioral output in autism and epilepsy patients. Although it is unknown of how exactly GABAA receptor function affects neurodevelopment, a recent study demonstrated that activation of GABAA receptors leads to hyperpolarization, increased cell volume, and accumulation of stem

of GABAA receptors leads to hyperpolarization, increased cell volume, and accumulation of stem cells in S phase, thereby causing a rapid decrease in cell proliferation (Andang et al. 2008). Any subtle change in stem cells may have profound impact in neuronal function and leave imprint on later brain network activity. In addition to altered interneuron and excitatory neuronal numbers, studies on brain specimen of both autism and epilepsy from multiple investigators have consistently demonstrated

specimen of both autism and epilepsy from multiple investigators have consistently demonstrated that the expression of GABAA receptors and ionotropic glutamate receptors is altered in both disorders (Fatemi et al. 2010; Jansen et al. 2010). In the case of GABA, the alterations extend to multiple GABAA receptor subunits instead of single GABAA receptor subunit. This aberrant profile of GABAA receptors is consistent with the complex GABAA receptor assembly and dynamic expression patterns in the

is consistent with the complex GABAA receptor assembly and dynamic expression patterns in the brain. In normal brain, expression of GABAA receptor subunits varies regionally and temporally. For example, a1 and g2 subunits have low expression in early brain but increase over development and then stabilize through adolescence and adulthood, whereas a4 subunit expression is higher in infants than in older children. But based on a recent study in epilepsy patient brains, the normal expression

in older children. But based on a recent study in epilepsy patient brains, the normal expression pattern of GABAA receptor subunit is absent in those with focal cortical dysplasia and in those with gliosis (Jansen et al. 2010). Brain specimens of autism patients have demonstrated that systematic changes in GABAA subunit expression (Fatemi et al. 2010; Fatemi et al. 2009). Oblak demonstrated reduction of GABAA receptors and benzodiazepine binding sites in both the anterior and posterior

reduction of GABAA receptors and benzodiazepine binding sites in both the anterior and posterior cingulate cortices and fusiform gyrus in autism (Oblak et al. 2009, 2011). Given the fact that GABAA receptor traffics and functions as pentamer at the cell surface and synapse and the receptor stoichiometry of 2a(x)2b(x)1 g, 2a(x)2b(x)1d or 2a(x)3b(x)/3a(x)2b(x), it is not surprising that multiple GABAA receptor subunits are reduced. The brain regions that displayed different distribution include

receptor subunits are reduced. The brain regions that displayed different distribution include superior frontal cortex, parietal cortex, and cerebellum of subjects with autism (Fatemi et al. 2009, 2010). The fact that multiple regions are affected suggests the comprehensiveness of neurodevelopment abnormalities. There are also multiple mechanisms underlying the GABAA receptor subunit protein reduction: (1) altered GABAA receptor mRNA levels or stability, (2) altered posttranslational

reduction: (1) altered GABAA receptor mRNA levels or stability, (2) altered posttranslational modifications which reduce subunit maturation and receptor forward trafficking, (3) reduced neuronal numbers due to cell death of presynaptic interneurons, and (4) altered epigenetic regulations of GABAA receptor subunits (Samaco et al. 2005). Further research is needed to more fully understand how glutamate receptor and transporter biology is affected in autism and how it may contribute to epilepsy as a

receptor and transporter biology is affected in autism and how it may contribute to epilepsy as a comorbidity in ASD. The core features of autistic brain development suggest that alterations of excitatory neuronal numbers may, in themselves, account for changes in excitatory receptor concentrations. In addition to abnormal minicolumnar structure in the frontal, temporal, and anterior cingulate cortices, Courchesne et al. (2011) recently reported that neuronal counts in the dorsolateral

cortices, Courchesne et al. (2011) recently reported that neuronal counts in the dorsolateral prefrontal cortex and the medial prefrontal cortex in autistic brains were increased by 79% and 29%, respectively, compared to similar young age-matched males (Casanova 2006). The idea of increased proliferation or reduced apoptosis in autistic brains leading to excessive production of excitatory neurons may explain the increases in many axonal tracts of autistic brains and increased local functional

may explain the increases in many axonal tracts of autistic brains and increased local functional connectivity (Allen and Courchesne 2003). Studies of the blood have shown either increases or decreases in blood glutamate or blood glutamine (Lam et al. 2006). Gene expression studies have shown upregulation of several glutamate receptors or linked genes including EAAT1, GluR1, GluR2, and GluR3 mRNAs in the cerebellum and hippocampus of autistic individuals (Purcell et al. 2001). Surprisingly, few

in the cerebellum and hippocampus of autistic individuals (Purcell et al. 2001). Surprisingly, few actual glutamate receptors or transporters are among identified ASD-associated genes including kainate receptor GluR6, metabotropic GluR8 (GRM8), NMDA receptor GRIN2A, and AMPA receptor-associated protein GRIP1 (Barnby et al. 2005; Choudhury et al. 2012; Mejias et al. 2011). Many of these associations are significant since these proteins control interneuron excitability (GluR6, GRIN2A), gamma

are significant since these proteins control interneuron excitability (GluR6, GRIN2A), gamma oscillations from parvalbumin interneurons, critical periods (GRIN2A), and AMPA/GABA receptor expression (GRIP1 variants) in synapses (Endele et al. 2010; Fisahn et al. 2004; Kocsis 2011; Mejias et al. 2011; Zhang and Sun 2011).

Abnormal Neurotransmitter Signaling in Neurodevelopmental Disorders with Autism and Epilepsy as a Phenotype

Epilepsy and autism are comorbid in several neurodevelopmental disorders which, at their core, have impaired synaptic homeostasis. These disorders include, but are not limited to, Dravet syndrome, tuberous sclerosis, Angelman syndrome, fragile X syndrome, and Rett syndrome. GABA signaling could participate in neurodevelopmental disorders because GABA occupies a central role in development. Patients with these syndromes often suffer from autism, intellectual disabilities, and epilepsy. GABAergic

with these syndromes often suffer from autism, intellectual disabilities, and epilepsy. GABAergic function impairment may be a common pathway for many neurodevelopmental disorders including autism and epilepsy. It is not surprising given the essential role of GABA signaling in brain development. The exact mechanism of the concurrent epilepsy and autism in these neurodevelopmental disorders remains unclear. However, from both animal and genetic studies, altered GABAergic signaling is

remains unclear. However, from both animal and genetic studies, altered GABAergic signaling is consistently observed in these disorders. In Angelman syndrome, a maternally inherited deletion of 15q11-13 locus is identified in the majority of cases. The deletion includes the UBE3A gene (ubiquitin-protein ligases E3A) as well as three GABAA receptor subunit genes: the GABRB3, GABRA5, and GABRG3 (Hogart et al. 2007; Knoll et al. 1989; Wagstaff et al. 1991). UBE3A signaling controls EphB-EphrinB

et al. 2007; Knoll et al. 1989; Wagstaff et al. 1991). UBE3A signaling controls EphB-EphrinB regulation of glutamate synapse development (Margolis et al. 2010). Conversely, increased dosage of UBE3A results in mice with autistic-like behavior and decreased glutamate neurotransmission (Smith et al. 2011). In fragile X syndrome, GABAA receptor subunits are downregulated, possibly due to lack of translational regulation by FMRP1 (D’Hulst et al. 2006; Fatemi et al. 2011). Studies on fragile X

translational regulation by FMRP1 (D’Hulst et al. 2006; Fatemi et al. 2011). Studies on fragile X syndrome indicate that the increased activation of metabotropic glutamate receptor 5 (mGluR5), a member of the group I mGluR family, contributes to a predisposition for the development of epilepsy, autism, and other neuropsychiatric disorders (Bianchi et al. 2009). The major neuropsychiatric features of fragile X syndrome are caused by unchecked activation of mGluR5 (Bear et al. 2004), and

features of fragile X syndrome are caused by unchecked activation of mGluR5 (Bear et al. 2004), and downregulation of postsynaptic mGluR5 signaling can correct developmental disorders in the disease (Dolen et al. 2007). Depolarized firing states of neurons are driven by recurrent local excitation and inhibition in a given cortical region which underlies the so-called slow oscillation neocortical rhythm (<1 Hz). Aberrant postsynaptic mGluR5 signaling in neocortex of FXR1 KO mice alters this slow

(<1 Hz). Aberrant postsynaptic mGluR5 signaling in neocortex of FXR1 KO mice alters this slow oscillation and inhibitory dendritic currents from somatostatin interneurons (Hays et al. 2011; Paluszkiewicz et al. 2011). Additionally, transient local hyperconnectivity of prefrontal cortex during development and abnormal presynaptic short-term plasticity contributes to slower synaptic responses and integration of informational processing in the FXR KO mice (Deng et al. 2011; Testa-Silva et al.

integration of informational processing in the FXR KO mice (Deng et al. 2011; Testa-Silva et al. 2011). All these mechanisms contribute to the aberrant maturation and function of synchronized cortical rhythmic activity needed for behavioral and cognitive output of neural networks. In FXR KO mice, increased mTOR signaling and increased protein synthesis is associated with the above described synaptic pathology and seizures (Carson et al. 2012). In contrast, recent advances in TSC KO mouse

synaptic pathology and seizures (Carson et al. 2012). In contrast, recent advances in TSC KO mouse studies show increased synaptic mTOR signaling, and decreased protein synthesis is associated with reductions in glutamate and GABA neurotransmission (Auerbach et al. 2011). In tuberous sclerosis (TSC), there is altered transcription of genes encoding glutamatergic and gamma-aminobutyric acid (GABA)-ergic receptors. GABRA1 and GABRA2 mRNA levels were reduced in both dysplastic neurons and giant

receptors. GABRA1 and GABRA2 mRNA levels were reduced in both dysplastic neurons and giant cells compared to control neurons (White et al. 2001). In Rett syndrome, the recent study by Zoghbi et al. (2010) demonstrated that MeCP2 is critical for normal function of GABA-releasing neurons and that subtle dysfunction of GABAergic neurons alone can recapitulate the numerous neuropsychiatric phenotypes and epilepsy common to Rett syndrome patients (Chao et al. 2010). In addition to this comprehensive

and epilepsy common to Rett syndrome patients (Chao et al. 2010). In addition to this comprehensive list of neurodevelopmental disorders, impaired GABAergic signaling is frequently identified in other ASD- and epilepsy-associated genes too. For example, genetic disruption of the autism spectrum disorder risk genes MET, PLAUR, and neuropilin-2 induces the alteration of GABAA receptor subunits and defects in GABAergic and excitatory circuitry which lead to autistic-like traits and epilepsy

and defects in GABAergic and excitatory circuitry which lead to autistic-like traits and epilepsy (Brooks-Kayal 2010; Eagleson et al. 2010; Gant et al. 2009; Powell et al. 2003).

Summary In summary, the phenotypical and genomic heterogeneity of both autism and epilepsy still remains a challenge. These findings suggest that the genetic heterogeneity of both autism and epilepsy may produce similar deficits by bidirectional deviation from normal synaptic homeostasis at GABAergic or excitatory synapses. Future work using human neuropathology specimens and models especially those associated with neurodevelopmental abnormalities will further elucidate the molecular

those associated with neurodevelopmental abnormalities will further elucidate the molecular pathophysiological mechanisms of aberrant neurotransmitter receptors and their effects on signaling in autism alone, epilepsy alone, or patients with the autism and epilepsy phenotype.

Treatment See ▶Neurologist  Epilepsy and Autism ▶Autism and Epilepsy  Epileptiform Abnormalities ▶EEG Abnormalities as a Biomarker of Severity in ASD  Epinephrine Alex Bonnin Keck School of Medicine, University of Southern California, Los Angeles, CA, USA
 Synonyms Adrenaline; L-Adrenalin; L-Epinehphrine; L-Epinephrine; Levo-Methylaminoethanol-catechol; Levoreninum; Lyodrin

Definition Epinephrine is a catecholamine transmitter and hormone, generated from the amino acid tyrosine (or phenylalanine) in a common biosynthetic pathway with dopamine and norepinephrine. The enzyme tyrosine hydroxylase converts tyrosine to l-dihydroxyphenylalanine (l-DOPA). l-DOPA is then decarboxylated to dopamine by DOPA decarboxylase (DDC). Dopamine b-hydroxylase converts dopamine to norepinephrine. Finally, epinephrine is generated by N-methylation of norepinephrine, a process

to norepinephrine. Finally, epinephrine is generated by N-methylation of norepinephrine, a process catalyzed by phenylethanolamine N-methyltransferase (E.C. 2.1.1.28, PNMT; Axelrod, 1962), utilizing S-adenosylmethionine as the methyl donor. The adrenal medulla is the major site of peripheral epinephrine production. Once released in the blood, it causes systemic vasoconstriction and gastrointestinal relaxation, stimulates the heart, and dilates bronchi and cerebral vessels. In the brain,

relaxation, stimulates the heart, and dilates bronchi and cerebral vessels. In the brain, epinephrine-producing (adrenergic) neurons were identified by their expression of PNMT. Immunohistochemical studies in animals have established several groups of adrenergic neurons (PNMT+) in the medulla oblongata: ventrolateral A1 and C1 cell groups, dorsomedial A2 and C2 groups, a rostral midline C3 group, and an additional unnumbered compact group in the dorsolateral portion of the nucleus tractus

and an additional unnumbered compact group in the dorsolateral portion of the nucleus tractus solitarii (nTS). PNMT-positive neurons have also been mapped in the human medulla. Epinephrine exerts its actions via three distinct types of adrenergic receptors: α1, α2, β. The α1 receptor class (α1A, α1B, and α1D receptors) is coupled to Gq-type G-proteins. The α2 class (α2A, α2B, and α2C) of receptors is coupled to Gi-type G-proteins. The β class of receptors (β1, β2, and β3) couples to Gs-type

is coupled to Gi-type G-proteins. The β class of receptors (β1, β2, and β3) couples to Gs-type G-proteins. Epinephrine is catabolized to the inactive compound L-metanephrine through the action of catecholamine-O-methyltransferase (COMT).

Episodic Memory Diane M. Lickenbrock Human Development and Family Studies, The Pennsylvania State University, University Park, PA, USA

Synonyms Autobiographical memory  Definition A subtype of the declarative memory system which stores personally experienced events (e.g., a memory of a specific place or time). Episodic memory is often associated with autobiographical context (e.g., remembering what happened on one’s tenth birthday). This specific type of memory is assessed using a free recall task. Research has shown that individuals with Autism Spectrum Disorder can have impairments in episodic memory.

Epistasis Kai Wang Department of Psychiatry and Department of Preventive Medicine, The Zilkha Neurogenetic Institute, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

Definition In genetics, epistasis refers to the interaction between two or more genes, such that the phenotype differs from what would be expected if the genes exert their effects independently. The importance of epistasis has been increasingly recognized in human genetics in recent years, since it may be partially responsible for the “missing heritability” observed for complex diseases, that is, the aggregation of the marginal effects from genetic variants associated with a disease do not

is, the aggregation of the marginal effects from genetic variants associated with a disease do not completely explain the heritability of the disease.

Historical Background The term “epistasis” was first used by the English geneticist William Bateson in 1909 in his book “Mendel’s Principles of Heredity.” It was used to describe deviations from Mendelian inheritance patterns due to one gene masking the effects of another gene, that is, a particular variant in one locus prevents a variant at another locus from manifesting its effects. The book also popularized Mendel’s Law of Segregation and Law of Independent Assortment, originally conceived

popularized Mendel’s Law of Segregation and Law of Independent Assortment, originally conceived by Gregor Mendel in the eighteenth century and rediscovered in 1900. Bateson was also the first person to use the word “genetics” to describe the study of inheritance and the science of variation, and he codiscovered genetic linkage with Reginald Punnett. There are many well-known examples of epistasis in genetics. One of the oldest examples described in humans is on the expression of the ABO blood

in genetics. One of the oldest examples described in humans is on the expression of the ABO blood group system. Some individuals have a rare condition where they lack a protein called the H antigen. The H antigen is used to form A and B antigens, so these individuals cannot make A antigen or B antigen, and this scenario is often referred to as the “Bombay phenotype.” Individuals with Bombay phenotype can only be transfused with blood from other Bombay phenotype individuals. Even though these

can only be transfused with blood from other Bombay phenotype individuals. Even though these individuals with Bombay phenotype may have A or B genes, they cannot express the A or B blood group, and instead they appear to be blood group O. In this example, the H antigen masks the effect of the A or B genes, resulting in epistasis. Another well-known example of epistasis is on genetics of coat color in mice. Two coat-color loci are involved in the control of coat color. At the first locus, having

in mice. Two coat-color loci are involved in the control of coat color. At the first locus, having color (allele A) is dominant over lack of color (allele a). At the second locus, having the coat color agouti (allele B) is dominant over black (allele b). Consider a mouse that has homozygous aa alleles in the first locus: it will show no coat color, regardless of its genotype at the second locus (BB or Bb or bb). Thus, the variants at the first locus mask the effect of the second locus, and there

or Bb or bb). Thus, the variants at the first locus mask the effect of the second locus, and there is epistasis between the two loci. It is important to emphasize that Bateson’s simple form of epistasis, as illustrated by the two well-known examples above, is merely a limited form of epistasis that works on Mendelian trait and is intuitively appealing to most biologists. However, a broader form of epistasis – from a population genetics perspective – involves more sophisticated statistical

of epistasis – from a population genetics perspective – involves more sophisticated statistical modeling and is more relevant for complex traits genetics. For example, two alleles at two different loci may each increase adult height by 1 cm on average, but when these two alleles occur together in the same individual, they may increase the height by 4 cm, which is more than what would be expected if the two alleles exert their effects independently. This broader form of epistasis is what

if the two alleles exert their effects independently. This broader form of epistasis is what typically emerges from current literature and is one of the hotly researched areas in genetics of complex diseases and traits.

Current Knowledge Contribution of Epistasis to “Missing Heritability” Genome-wide association studies (GWASs) have been very successful in identifying and replicating disease susceptibility loci for common and complex human diseases. These studies assay whole-genome SNP markers (typically 500,000 or more) for individuals grouped by different phenotypes (such as patients and control subjects) then test the statistical association between each marker and the phenotype. Top findings showing strong

test the statistical association between each marker and the phenotype. Top findings showing strong evidence of statistical significance are then replicated in another set of samples. As of December 2010, over 1,200 human GWASs have examined over 200 diseases and traits and found almost 4,000 SNP associations. A question that often arises in GWAS is “where is the missing heritability?” The question refers to the fact that the collection of variants discovered in GWAS only explains a minor

refers to the fact that the collection of variants discovered in GWAS only explains a minor fraction of the heritability when simply added together, even for diseases or traits that are highly heritable. Multiple reasons have been proposed to explain the missing heritability, including (1) rare variants at known loci that act independent of common causal variants, (2) rare mutations in many thousands of loci, (3) copy number variants, (4) gene-gene interactions, (5) hidden environmental factors

of loci, (3) copy number variants, (4) gene-gene interactions, (5) hidden environmental factors and epigenetic changes, and (6) wrong diagnosis of “common diseases.” Among these possible explanations, epistasis or gene-gene interactions could play a major role in contributing to “missing heritability,” since if the effect of one locus is masked by effects at another locus, power to detect the first locus is likely to be reduced and elucidation of the joint effects at the two loci will be

the first locus is likely to be reduced and elucidation of the joint effects at the two loci will be hindered. If more than two loci are involved, complex multiway interactions may be present, further complicating the situation. For complex traits, given the known involvement of many contributing loci detected in GWAS, it is quite likely that epistasis will have to play a role. Therefore, it is reasonable to suspect that epistasis is a ubiquitous component of the genetic architecture of complex

to suspect that epistasis is a ubiquitous component of the genetic architecture of complex traits and diseases, such as neuropsychiatric and neurodevelopmental disorders.

Epistasis in Autism Although several syndromes with single-gene causes, such as Rett syndrome and fragile X syndrome, share some phenotypic features with autism, it is widely recognized that autism is not a single-gene disease. Instead, the molecular pathophysiology of autism perhaps requires many genes in multiple biological pathways. However, the exact underlying genetic architecture for autism is still not well understood, and less is known on how different genetic components interact with

is still not well understood, and less is known on how different genetic components interact with each other. It is possible that rare, highly penetrant variants play a major role in each individual patient (oligogenic model), or it is also possible that thousands of variants, each with moderate effect sizes, contribute to autism pathogenesis. The first argument is supported by the observation that many highly penetrant mutations, especially large-scale deletions, have been enriched in patients

many highly penetrant mutations, especially large-scale deletions, have been enriched in patients with autism, although each patient may have different combinations of rare variants. The second argument is supported by the observation that sophisticated statistical approaches that utilize information from whole-genome markers, each with small effect sizes, can explain a large fraction of schizophrenia susceptibility. Besides these standing hypotheses, it is also possible that epistatic

schizophrenia susceptibility. Besides these standing hypotheses, it is also possible that epistatic interactions play a major role in autism pathogenesis and that genetic variants with moderate effects sizes, when present in particular combination, will lead to much higher effect sizes that ultimately results in autism pathogenesis. There are sporadic reports in literature on observed epistasis in autism susceptibility. For example, Coutinho et al. have tested for epistasis between loci with

in autism susceptibility. For example, Coutinho et al. have tested for epistasis between loci with marginal effects in autism. In addition to the significant independent effects, evidence for interaction between SLC6A4 and ITGB3 markers was also found. The overall results implicate SLC6A4 and ITGB3 gene interactions in both autism etiology and in serotonin level determination, providing evidence for a common underlying genetic mechanism and a molecular explanation for the association of platelet

a common underlying genetic mechanism and a molecular explanation for the association of platelet hyperserotonemia with autism. With the wider application of GWAS and copy number variation studies, more epistasis may be observed in autism in the future.

Physical Interaction Versus Statistical Interaction The word “interaction” is sometimes used to infer epistasis; however, there are two types of interactions in the contexts of genetics: physical interaction versus statistical interaction. Proteomics techniques, such as yeast two-hybrid systems, are now available to locate proteins that interact with one another in a protein complex. In these cases, proteins bind to each other, resulting in molecular functions that cannot be performed by each

proteins bind to each other, resulting in molecular functions that cannot be performed by each components of the protein complex. In contrast, statistical interaction summarizes genotype-phenotype relationships using population-level data rather than proteomic data. In fact, genes with statistical interactions do not have to physically bind to each other.

Statistical Methods to Detect Epistasis from Genetic Data Mathematically, the quantitative genetic concept of epistasis may be represented for two loci by the linear model

y ¼ u þ a1x1 þ a2x2 þ d1z1 þ d2z2 þ iaax1x2 þ iadx1z2 þ idaz1x2 þ iddz1z2 where y is a quantitative phenotype and xi and zi are dummy variables related to the underlying genotype at locus i. The coefficients m, a1, d1, a2, and d2 represent genetic parameters that may be estimated corresponding to the mean effect, additive effect, and dominance effects at the two loci; iaa, ida, ida, and idd correspond to epistatic interaction effects. Lack of epistasis in this model implies that all interaction

to epistatic interaction effects. Lack of epistasis in this model implies that all interaction coefficients are zero. In this case, the resulting model is

y ¼ u þ a1x1 þ a2x2 þ d1z1 þ d2z2 where each allele exerts their effect independently with the effect size of a1, a2, d1, and d2, respectively. In practice, it is more typical to assume a simple additive model where the effect sizes of a homozygote doubles that of a heterozygote. Therefore, it is convenient to use a single variable x or z to denote the number of copies of the allele 2 present at the locus. The linear model can then be simplified as

y ¼ u þ ax þ dx þ iadxz In this case, lack of epistasis in this model implies that iad is zero, that is, model will simply be
y ¼ u þ ax þ dz For binary traits, a logit function is typically used to model the response variable:

log it pð Þ ¼ log p= 1   pð Þð Þ ¼ u þ ax þ dz þ iadxz where the outcome of interest (such as probability of disease) is defined to be p. It is important to note that besides these simple parametric linear models, other forms of modeling strategies also exist. There are unique advantages for using linear models as it is intuitively simple to interpret and it is relatively easy to implement. However, they may have limitations for detecting nonlinear patterns of interactions. For example, when

they may have limitations for detecting nonlinear patterns of interactions. For example, when many genes are involved in explaining complex diseases or traits, the number of predictor variables (genotype combinations) grow exponentially as each SNP is added to the model. Estimation of parameters in such linear models can be unstable and may easily result in overfitting the data. Additionally, linear models generally assume that genetic factors involved in interaction also exhibit independent

models generally assume that genetic factors involved in interaction also exhibit independent marginal effects, but this may not be the case in reality (although it is not known how common it is for interaction to be present in the absence of any marginal effects). Nonparametric approaches, especially those involving modern machine-learning approaches, may have their unique advantages in specifically addressing these issues (see below).

Future Directions The Role of Epistasis in Genetic Susceptibility to Autism Despite the recent discovery of multiple common and rare genetic variants that confer autism susceptibility with different effect sizes, whether and how these genetic factors interact with each other is currently not known. Furthermore, the form of epistasis involved in autism pathogenesis may include both gene-gene and gene-environment interactions. Many environmental factors, such as air pollution and paternal age,

gene-environment interactions. Many environmental factors, such as air pollution and paternal age, have been linked to autism susceptibility in recent years, but whether these environmentalriskfactorsfunctionindependentlyofgenetic risk factors is an unexplored area of research. On the other hand,it iswellknown that certainenvironmental factors, including radiation, smoking, and older age, can increase the possibility of de novo genetic alterations, such as de novo copy number variants (CNVs).

the possibility of de novo genetic alterations, such as de novo copy number variants (CNVs). Given the known involvement of de novo variants in autism, it is highly reasonable to suspect that theremaybe gene-environment interactionsthat play a role in increasing genetic susceptibility to autism. This hypothesis needs to be tested in future larger scale genetic studies that also collect various aspects of environmental variables.

Testing Epistasis in Genome-Wide Level In recent years, a large collection of methods have been developed to detect the presence of epistasis from population-level genetic data. By allowing for epistatic interactions between candidate disease loci, it may be possible to succeed in identifying genetic variants with weak marginal effects that may otherwise evade detection. In addition, some statistical or computational models for modeling genome-wide epistasis (such as support vector machine

or computational models for modeling genome-wide epistasis (such as support vector machine approaches and penalized regression approaches) can be easily adapted for prediction of phenotypes from genotypes, enabling the implementation of personalized disease risk predictions. Although the importance of epistasis has been increasingly recognized, one may argue that it has never really received the attention that it deserves in genetic association studies, especially in GWAS. The major reason is

attention that it deserves in genetic association studies, especially in GWAS. The major reason is not the lack of methods to test epistasis per se, but the need to adjust the enormous burden of multiple testing, and the lack of appropriate biological interpretation to significant results. In typical GWAS with 500,000 SNP markers, testing genome-wide epistasis implies the need to test for approximately 250 billion hypotheses, even when considering only two-way interactions. The situation becomes

250 billion hypotheses, even when considering only two-way interactions. The situation becomes worse when three-way or multiway interactions are considered. With the availability of massively parallel computational platform, this may no longer be a computational issue, but how to appropriately calculate the effective number of independent tests and accordingly adjust multiple testing is a problem without consensus on solution.

The Development of Bioinformatic Approaches Although sophisticated approaches based on various forms of linear models have been used to detect epistasis in genome-wide scale, they may have some intrinsic limitations as discussed above. Therefore, novel approaches from the computational science arena, including machine-learning approaches such as random forests (RFs) and multifactor dimensionality reduction (MDR), have been developed to address these issues. Some of these approaches represent

reduction (MDR), have been developed to address these issues. Some of these approaches represent “black-box” modeling strategies: rather than fitting the data into a prespecified statistical model that the investigators believes in, these methods aim to let the data tell us what the appropriate model is. This is a rapidly growing area for methods development, and several recent reviews highlighted the advantage of these methods.

Biological Interpretation of Epistasis When significant epistasis is found, the next natural question is how to interpret the results and how to leverage this information to better understand the genetic architecture of complex diseases. Unfortunately, there is no easy answer to these questions. Many factors may blur the seemingly straightforward interpretation of the epistatic effects. For example, many modern genetic association studies use SNP markers, which rely on linkage disequilibrium to

many modern genetic association studies use SNP markers, which rely on linkage disequilibrium to detect indirect associations. Since the marker allele most likely may not be the true disease allele, the detected epistatic effects could be due to the artifact of the imperfect tagging of the disease allele. Even worse, if the marker allele, being a common allele, is merely a proxy for multiple rare functional alleles (so-called synthetic association), then it will not be possible to tell which

functional alleles (so-called synthetic association), then it will not be possible to tell which rare allele has epistasis with variants at another loci or whether the observed epistasis merely reflects a “synthetic epistasis” on multiple rare alleles. Therefore, significant statistical results may not always lead to a biologically sound explanation, and it is important not to overinterpret the statistical results. In summary, direct biological inference from the results of analysis on epistasis

results. In summary, direct biological inference from the results of analysis on epistasis can be very difficult. Compared to marginal effects of individual markers in association tests, the biological knowledge gained from investigation of epistasis, even in the presence of strong statistical evidence, can be quite limited. The most effective interpretation of epistasis probably depends on some levels of prior biological knowledge on the genes under investigation, as well as additional

some levels of prior biological knowledge on the genes under investigation, as well as additional molecular evidence, rather than a pure statistical exercise on P values and effect sizes.

Equilibrium ▶Vestibular Function in Children with Autism  Equinus Gait ▶Toe Walking  Equivalence-Based Instruction (EBI) Bryan J. Blair1,2 and Michael F. Dorsey1,3 1Institute for Behavioral Studies, The Van Loan School, Endicott College, Beverly, MA, USA

2Long Island University, Brooklyn, NY, USA 3Amego Inc., The Best Clinical Network, Attleboro, MA, USA  Definition Equivalence-Based Instruction (EBI) refers to procedures based on the behavioral principle of stimulus equivalence (Sidman 1994). Stimulus equivalence classes are formed when stimuli that share no physical similarities become functionally equivalent to (i.e., substitutable for) each other (Green and Saunders 1998; Sidman 1994; Sidman and Tailby 1982). The term equivalence was

each other (Green and Saunders 1998; Sidman 1994; Sidman and Tailby 1982). The term equivalence was borrowed from the field of mathematics (if A ¼ B and B¼C then A ¼ C) to describe the emergent relational responding emitted by learners that was observed by early researchers. An equivalence class consisting of three member stimuli (A, B, C), for example, forms when a learner emits the following nine responses of which only three are directly trained (Table 1 and Fig. 1): when presented with

nine responses of which only three are directly trained (Table 1 and Fig. 1): when presented with sample A (or B or C), the learner selects the identical stimulus (reflexivity or identity matching); after being trained to select B when presented with A, the learner selects A when presented with B (symmetry); after being trained to select C when presented with A, the learner selects A when presented with C (symmetry); selecting B when presented with C (equivalence) and selecting C when presented

with C (symmetry); selecting B when presented with C (equivalence) and selecting C when presented with B (equivalence). Three or more classes of at least three stimuli are generally taught simultaneously (e.g., numbers, categories, types, etc.) (Table 2 and Fig. 2). For typically developing learners, these responses tend to emerge without the need for direct training. However, for learners with an Autism Spectrum Disorder (ASD), direct training is often necessary. EBI procedures use a variety

an Autism Spectrum Disorder (ASD), direct training is often necessary. EBI procedures use a variety of specific training methods to teach a small number of skills (typically matching or verbal responses) that result in the generation of an even larger number of emergent (i.e., untrained) skills. Training and testing methods may consist of conditional discrimination training (e.g., match-to-sample (MTS)), sorting, categorization, or verbal behavior training). EBI generally uses physical stimuli

(MTS)), sorting, categorization, or verbal behavior training). EBI generally uses physical stimuli (e.g., laminated cards, objects, spoken, etc.); however, the instruction may also be delivered via a computer or mobile device. Unlike stimulus generalization, in which a person’s responses occur in stimulus conditions that are similar to, but not the same as the conditions present during training, stimulus equivalence describes emergent, or derived relational responding. With stimulus

training, stimulus equivalence describes emergent, or derived relational responding. With stimulus generalization, a child might call every adult male “dad” after being taught that his father should be called “dad.” However, with stimulus equivalence, a child might learn that the written numeral “7” is functionally equivalent to a card with seven dots and also to the written word “seven,” and the relations among all three members become substitutable (Fig. 2). Similar to stimulus

and the relations among all three members become substitutable (Fig. 2). Similar to stimulus generalization, these relations emerge as a result of the direct training of specific discriminations; however, unlike stimulus generalization, a person will emit the same responses when presented with stimuli that share no physical similarities, and this discriminative responding emerges without being directly taught.

| Alphanumeric label | Sample stimulus | Selection response | Name of relation | Trained/tested |
|--------------------|-----------------|-------------------|------------------|---------------|
| A1 = A1            | A1              | A1                | Reflexivity      | Trained or tested |
| B1 = B1            | B1              | B1                | Reflexivity      | Trained or tested |
| C1 = C1            | C1              | C1                | Reflexivity      | Trained or tested |

| C1 = C1            | C1              | C1                | Reflexivity      | Trained or tested |
| A1 = B1            | A1              | B1                | Trained          | Trained       |
| A1 = C1            | A1              | C1                | Trained          | Trained       |
| B1 = A1            | B1              | A1                | Symmetry         | Tested        |
| C1 = A1            | C1              | A1                | Symmetry         | Tested        |

| C1 = A1            | C1              | A1                | Symmetry         | Tested        |
| B1 = C1            | B1              | C1                | Equivalence      | Tested        |
| C1 = B1            | C1              | B1                | Equivalence      | Tested        |

| C1 = B1            | C1              | B1                | Equivalence      | Tested        |
 Equivalence-Based Instruction (EBI), Fig. 1 3-member equivalence class diagram  | Class | Member | | | |-------|--------|---|---| |       | 1      | 2 | 3 | | A     | Printed numeral | 7 | 8 | 9 | | B     | Printed quantity |    |   |   | | C     | Printed word | Seven | Eight | Nine |  Equivalence-Based Instruction (EBI), Fig. 2 Example equivalence class diagram for the number/quantity “seven”

Historical Background Investigations and applications of EBI began in the 1990s and have continued across research sites, populations, settings, skills, and training methodologies (Rehfeldt 2011). EBI procedures are generally based on the principle of stimulus equivalence first identified by Sidman (1994). EBI research has sought to clarify some of the methodological questions that have naturally arisen as it has been used with an increasing number of learners and skills. In addition, the use of

as it has been used with an increasing number of learners and skills. In addition, the use of technology (e.g., computer-based training and mobile applications) in the delivery of EBI systems has been an area of interest for researchers and educators. There is some disagreement in the field of Applied Behavior Analysis (ABA) regarding the term EBI and its use to describe a number of similar instructional procedures; however, EBI is the most commonly used term to describe procedures where the

procedures; however, EBI is the most commonly used term to describe procedures where the explicit goal of instruction is the emergence of derived equivalence relations. The term has gained sufficient academic and clinical usage that the Behavior Analyst Certification Board (BACB) has included it in the 5th Edition of the Board Certified Behavior Analyst Task List (Behavior Analyst Certification Board 2017) as a required competency for practicing applied behavior analysts.

Rationale or Underlying Theory There are several theoretical frameworks that attempt to account for the emergent responding seen in EBI. Sidman (1994) proposed that the observed emergent responding was a direct result of the contingencies of reinforcement and that no other behavioral principle was necessary to account for the untrained responding. However, others have argued that this explanation is insufficient to support the formation of equivalence classes. Hayes et al. (2001) argued for a

is insufficient to support the formation of equivalence classes. Hayes et al. (2001) argued for a new conceptualization of these emergent responses. The authors suggested that equivalence relations are merely one example of a vast array of derived relational responses (e.g., more, closer, taller, older, etc.). A third explanation for the emergence of derived responding is naming (Horne and Lowe 1996). The authors posit that a form of mediating (usually covert) verbal behavior is in some way

1996). The authors posit that a form of mediating (usually covert) verbal behavior is in some way responsible for the emergence of equivalence classes. However, for teachers and other practitioners, these different interpretations of the research are somewhat academic and do not significantly affect applications or the development of curricula. Since the experimental identification of equivalence relations occurred in the 1970s, dozens of applied and translational studies have been conducted and

occurred in the 1970s, dozens of applied and translational studies have been conducted and published that replicated and extended the early laboratory observations of the formation of equivalence relations. However, like any established intervention or treatment, further investigation into specific learner characteristics, prompting procedures, training and testing parameters, fluency, generalization, maintenance, and application across settings continues.

Goals and Objectives When compared to other teaching methods, the main goal of EBI is to teach skills in a more efficient way. With traditional methods, skills are usually taught to mastery, discretely, and then generalization and maintenance of the skills are tested. However, with EBI, a small set of skills is taught and the emergence of several other skills is then tested (including the maintenance and generalization of those emergent skills). For example, where a teacher might have

maintenance and generalization of those emergent skills). For example, where a teacher might have previously used a stimulus fading procedure to establish relations between two stimuli, a teacher might now use EBI to establish an equivalence class. The underlying objective of EBI is thus to reduce the overall time required to teach skills by relying on the emergence of untrained skills.

Treatment Participants EBI has been shown to be effective across a range of participants with a wide array of ages, functioning levels, and with children with developmental disabilities, specifically Autism Spectrum Disorders (ASDs). Published research has demonstrated the efficacy of EBI procedures for people with ASDs of all ages; however, the bulk of the research has been conducted with children. Research has been conducted on basic principles, protocols, and factors affecting mastery and

Research has been conducted on basic principles, protocols, and factors affecting mastery and efficacy of the procedures in well-controlled experiments using arbitrary stimuli in addition to applied skills and in clinical settings. Particularly, EBI has been shown to be effective in teaching children with an ASD more efficiently, and EBI results in generative responding unlike with more traditional approaches to instruction (McLay et al. 2013).

Treatment Procedures EBI is a general term that is used to refer to a number of component training and testing protocols, procedures, and structures. The most common method of training and testing is conditional discrimination training, specifically MTS. Other methods of training and testing have been shown to be effective including sorting, categorization, and verbal behavior (Jennings and Miguel 2017; Ma et al. 2016; Miguel et al. 2008). However, these procedures tend to be more difficult to

2017; Ma et al. 2016; Miguel et al. 2008). However, these procedures tend to be more difficult to prepare and implement in applied settings. During MTS training, a sample stimulus and an array of comparison stimuli are presented and a selection response is prompted and reinforced, and during testing the response is generally not prompted or reinforced. Prior to training, pretests (i.e., baseline tests) are conducted to determine the learner’s prior history with the stimuli. Then, certain

tests) are conducted to determine the learner’s prior history with the stimuli. Then, certain discriminations (e.g., AB and AC) are trained and tests are conducted after training to determine if the derived responses (BA, CA, BC, CB) emerged. If a learner fails a test, remedial training for the trained relations is typically conducted. Posttests are then conducted to determine if an equivalence class has formed (i.e., all stimuli have become functionally equivalent). Every sensory modality can

has formed (i.e., all stimuli have become functionally equivalent). Every sensory modality can be used with EBI training. Stimulus forms can include auditory (e.g., spoken), visual (e.g., pictures or written text), and tactile (e.g., physical objects). Similarly, several response forms can be trained including selection-based (e.g., selecting from an array of comparison stimuli, multiple choice questions) and topographical (e.g., vocal product, written, typed, drawn, etc.). It is recommended to

and topographical (e.g., vocal product, written, typed, drawn, etc.). It is recommended to use auditory stimuli as samples as it is impossible to simultaneously present multiple auditory stimuli as comparisons. Green (2001) and MacDonald and Langer (2018) listed a number of best practices regarding conditional discrimination training and these practices should be followed for MTS in EBI as well. The suggested methodological guidelines include:

* Fast-paced trial presentation * Immediate reinforcement. * Present a different sample stimulus every trial * Have at least three comparison stimuli in an array * Counterbalance the presentation order and positions of sample and comparison stimuli

* Require an observing response * Auditory stimuli should be used as sample stimuli * Prepare trials out of view of the learner * Teach basic learner and readiness skills prior to using MTS * Use errorless teaching or prompt-fading methods Basic and applied research has also established best practices regarding EBI specifically. These include using a simple-to-complex training protocol and a one-to-many (OTM) training structure (Arntzen 2012; Saunders and Green 1999). A simple-to-complex

a one-to-many (OTM) training structure (Arntzen 2012; Saunders and Green 1999). A simple-to-complex training protocol describes a procedure where the AB and AC discriminations are taught followed by testing for the emergent relations. An OTM training structure is the term used to describe the method of specifically training the AB and AC discriminations as opposed to other combinations (e.g., AB then BC or AC then BC). Given that training and testing is usually selection-based, it is also

AB then BC or AC then BC). Given that training and testing is usually selection-based, it is also recommended to test for the emergence of topographical responding (e.g., vocal tact, written response, etc.) where appropriate. And like all other behavior-analytic interventions, it is important to assess generalization (stimuli and settings) and maintenance over time.

Efficacy Information EBI has been shown to be effective for a variety of skills in numerous settings with hundreds of learners in controlled experiments. In addition, dozens of published articles have established the efficacy of EBI across a range of learners, ages, settings, ability levels, diagnoses, training procedures, stimulus parameters, and response topographies (Dixon et al. 2018; McLay et al. 2013; McKeel et al. 2015; Rehfeldt 2011). Given several published standards of the criteria

et al. 2013; McKeel et al. 2015; Rehfeldt 2011). Given several published standards of the criteria for the identification of an evidence-based practice EBP (National Autism Center 2015; Wong et al. 2015), and given that EBI procedures are comprised of component instructional methods (e.g., discrimination training) that are well established as EBPs, EBI would be considered to be an EBP that can be used for the development of individualized curriculum for learners with ASDs.

Outcome Measurement The defining feature of EBI is the establishment of emergent relational responding. This skill is easily observed and data can be collected in a variety of ways, including direct observation and electronically. In addition, procedural integrity assessments can be conducted, and interobserver agreement (IOA) and reliability data can be easily collected to ensure the validity of EBI procedures and the accuracy of accuracy and reliability of data collected from direct

of EBI procedures and the accuracy of accuracy and reliability of data collected from direct observations. Standard MTS data sheets may be used and data is commonly presented as a percentage of correct responding per sessions (either training or testing). The mastery criteria for the establishment of an equivalence class are generally between 90% and 100% correct for all trained and tested relations. Remedial training may be necessary in some cases. In addition to the establishment of

relations. Remedial training may be necessary in some cases. In addition to the establishment of equivalence classes comprised of stimuli used during training, generalization to novel stimuli that are also substitutable can be tested. Finally, test probes can be conducted periodically to determine if the skills maintain over time.

Qualifications of Treatment Providers The underlying teaching protocols for most EBI programs are based on conditional discrimination training and MTS procedures. Most practicing Board Certified Behavior Analysts (BCBAs) and/or Licensed Behavior Analysts receive academic and experiential training on conditional discrimination preparations and curriculum design. However, not all practicing BCBAs routinely use systematic and structured conditional discrimination training. Therefore, it is

BCBAs routinely use systematic and structured conditional discrimination training. Therefore, it is recommended that in addition to a BCBA or a License, that practitioners who wish to use EBI procedures gain some postcertification/licensure training (e.g., conference workshops, coursework, mentoring, etc.) before implementing EBI with their clients. That being said, the BACB’s Task List - 5th Edition (Behavior Analyst Certification Board 2017), which will be the standard in 2022, includes EBI as

(Behavior Analyst Certification Board 2017), which will be the standard in 2022, includes EBI as a required skill that practicing BCBAs should be fluent with. Therefore, over the coming years, all graduate programs will include coursework specifically on EBI, and many supervised experiences will include direct training of EBI procedures. In addition, given the right amount of training, supervision, and support, teachers, parents, paraprofessionals, and caretakers should be able to implement basic

and support, teachers, parents, paraprofessionals, and caretakers should be able to implement basic protocols based on EBI.

ER ▶Emotional Regulation  ERN ▶Error-Related Negativity  Error Correction Josh Pritchard1 and Mark Malady2 1Applied Behavior Analysis, Florida Institute of Technology, Orlando, FL, USA 2Florida Institute of Technology, Melbourne, FL, USA  Definition In the applied autism literature, error correction is a procedure that details what a trainer or program implementer does when the learner engages in an incorrect response during a teaching opportunity. Error correction aims to enhance learning by

an incorrect response during a teaching opportunity. Error correction aims to enhance learning by teaching the learner the appropriate response and increasing the learner’s contact with reinforcement contingencies rather than simply extinguishing errors. This procedure is intended to help learners acquire skills much faster and with less frustration than simply allowing trial and error. In other words, it teaches the learner what to do instead of just allowing them to make mistakes and try to

words, it teaches the learner what to do instead of just allowing them to make mistakes and try to determine the correct response on their own. There are three types of procedures for error correction. All three types are presented after the learner engages in a defined incorrect response (including no response within a specific amount of time) and are combined with a differential reinforcement procedure. Each of the three is defined independently below:

1. A procedure consisting of a series of response prompts following a learner’s error to increase the probability of the learner immediately engaging in the target response.
2. A series of repetitions of the target response contingent on a learner’s error, typically combined with a differential reinforcement procedure (Worsdell et al. 2005).

3. Manipulation of the stimulus or addition of a stimulus contingent on the learner engaging in an error, typically combined with a differential reinforcement procedure (Catania 2007).

The type of error correction in teaching approaches can vary substantially. For instance, some approaches use an “errorless” approach, in which they provide the correction (in the form of prompts) before or as soon as the incorrect response occurs. Other approaches utilize the “no-no prompting” correction in which they gradually increase the amount of error correction. Often these are chosen and tailored on the basis of the learner’s skill level and learning goals.

Error of Measurement ▶Measurement Error  Error-Related Negativity Michael J. Crowley Developmental Electrophysiology Laboratory, Yale Child Study Center, New Haven, CT, USA

Synonyms ERN  Definition The error-related negativity, or ERN, is an electrical brain signal measured with an electroencephalogram. Detectible at the scalp via the event-related potential (ERP), the ERN occurs when an individual makes a behavioral error. The ERN is typically evoked with simple cognitive tasks when an individual responds incorrectly or responds when a response should be withheld. The ERN manifests as a negative deflection in the ERP at approximately 80–150 ms following error

The ERN manifests as a negative deflection in the ERP at approximately 80–150 ms following error commission, time-locked to an individual’s response. The ERN is largest at central to frontal-central scalp regions. The most likely neural generator of the ERN is the anterior cingulate cortex, with converging evidence coming from fMRI (Ito et al. 2003), EEG source modeling (Luu et al. 2003), and brain lesion research (Stemmer et al. 2004).

Erythrocyte Glutathione Peroxidase Jonathan Kopel Texas Tech University Health Sciences Center (TTUHSC), Lubbock, TX, USA  Synonyms GSH-Px1 and Glutathione hydrogen-peroxide oxido-reductase  Definition Free radicals remain an integral component of numerous physiological and pathophysiological activities within cellular systems. Free radicals result from electronic excitations leading to the creation of unevenly paired electrons which react with biomolecules in three primary stages: initiation,

of unevenly paired electrons which react with biomolecules in three primary stages: initiation, propagation, and termination. In initiation, free radicals are produced through high-energy radiation, hemolytic cleavage, or the addition of excited electrons. Through propagation, free radicals produce additional free radicals through a process reminiscent of nuclear chain reactions. In the termination step, the propagation of free radicals may be eliminated when free radical species react with one

step, the propagation of free radicals may be eliminated when free radical species react with one another or are scavenged by antioxidant molecules. In biological systems, reactive oxygen species (ROS), such as •OH and O2•- are the most prominent free radical species produced from environmental exposure or cellular respiration (Devasagayam et al. 2004). Despite their destructive potential, ROS modulate numerous physiological activities, including the immune response, enzymatic activity,

ROS modulate numerous physiological activities, including the immune response, enzymatic activity, cellular signaling, and apoptosis (Devasagayam et al. 2004). Thus, the production of ROS is a highly regulated process requiring antioxidants to prevent, intercept, and repair free radical damage to lipids, proteins, and DNA (Devasagayam et al. 2004). Free radical damage has been linked oxidative stress to numerous psychiatric conditions, including schizophrenia, major depressive disorder,

stress to numerous psychiatric conditions, including schizophrenia, major depressive disorder, anxiety, and obsessive-compulsive disorders (OCD) (Chauhan and Chauhan 2006). Increasing evidence suggests reduced antioxidant capacity from prolonged oxidative stress may underly ASD neuro-cognitive abnormalities (Parellada et al. 2012). Furthermore, proper neuronal differentiation and development requires a delicate balance and coordination between antioxidant and pro-oxidant cellular process

requires a delicate balance and coordination between antioxidant and pro-oxidant cellular process (Fantel and Person 2002). As a result, researchers have investigated the correlation between ASD and several biomarkers for antioxidant status. In this regard, erythrocyte glutathione peroxidase (GSH-Px1) has shown significant promise (Kondolot et al. 2016; László et al. 2013; Paşca et al. 2006; Söğüt et al. 2003; Yorbik et al. 2002). GSH-Px1 is an essential antioxidant which eliminates hydrogen

et al. 2003; Yorbik et al. 2002). GSH-Px1 is an essential antioxidant which eliminates hydrogen peroxide to water using glutathione (GSH) and reduced NADPH as cofactors (Devasagayam et al. 2004). In a recent study, a negative correlation between homocysteine levels and erythrocyte glutathione peroxidase activity was discovered among ASD patients (Paşca et al. 2006). The authors argued this trend matched previous studies showing elevations in homocysteine down-regulates GSH-Px1 and thus

trend matched previous studies showing elevations in homocysteine down-regulates GSH-Px1 and thus contributes to the pathogenesis of ASD (Paşca et al. 2006). In addition, several clinical studies showed a significant decrease in erythrocyte GSH-Px1 in ASD patients (Kondolot et al. 2016; László et al. 2013; Parellada et al. 2012; Yorbik et al. 2002). However, one clinical study showed an increase in erythrocyte GSH-Px1 activity resulting from previous cellular oxidative stress or compensatory

in erythrocyte GSH-Px1 activity resulting from previous cellular oxidative stress or compensatory mechanisms to decreased antioxidant defenses (Söğüt et al. 2003). Overall, ASD patients showed a consistent decrease in antioxidant status and free radical scavenging. Given these results, further investigation into antioxidant biomarkers may provide additional insight in the pathogenesis and treatment of ASD.

Escape Extinction ▶Escape Training  Escape Training John Molteni Institute for Autism and Behavioral Studies, University of Saint Joseph, West Hartford, CT, USA

Synonyms Escape extinction  Definition Escape training/extinction is a behavioral procedure that is generally used to treat escape or avoidance maintained behaviors. Utilization of escape extinction procedures includes discontinuing the escape contingency upon the occurrence of the behavior. That is, when a behavior that is reinforced by negative reinforcement (removal of a stimulus contingent on a response that leads to an increase in that behavior), preventing escape contingent on that

on a response that leads to an increase in that behavior), preventing escape contingent on that behavior will lead to a reduction in that behavior. Escape extinction has been demonstrated as being effective alone and as part of a treatment package for a variety of escape maintained behaviors. One area of emphasis in the research literature where escape extinction has been widely used is feeding interventions for individuals with selective feeding or food refusal. Escape extinction in the form

interventions for individuals with selective feeding or food refusal. Escape extinction in the form of non-removal of the spoon (i.e., presenting the bolus of food within close proximity to the mouth of the participant until the food is accepted) is one example of escape extinction. Extinction procedures have several potential side effects including the extinction burst – an immediate increase in the frequency or intensity of behavior following the discontinuation of reinforcement –

increase in the frequency or intensity of behavior following the discontinuation of reinforcement – extinction-induced aggression-an escalation in aggressive behavior and spontaneous recovery, that is, a return to higher levels of the target behavior after a behavior has been reduced to low levels. In order to address the potential side effects of extinction, use of reinforcement-based procedures (e.g., reinforcement of food acceptance in the above example) is strongly recommended. Behaviors

(e.g., reinforcement of food acceptance in the above example) is strongly recommended. Behaviors can demonstrate resistance to extinction, meaning that the behavior will persist even when the reinforcement for that behavior has been removed. There are several factors that may contribute to this resistance including the level of motivation for the reinforcer (i.e., the higher the value of the reinforcer, the more resistant it is to extinction), the schedule of reinforcement, the alternative

reinforcer, the more resistant it is to extinction), the schedule of reinforcement, the alternative sources of reinforcement for the same behavior, the amount of effort required to emit the behavior (i.e., the higher the effort the less resistant to extinction), and whether the behavior has been under extinction before with rapid decreases with each application of extinction. Use of extinction is not recommended when the individual engages in high-intensity behavior such as dangerous aggressive

not recommended when the individual engages in high-intensity behavior such as dangerous aggressive and self-injurious behavior as an increase in the intensity of behavior would lead to risk of injury to the individual or others.

Escitalopram Carolyn A. Doyle1 and Christopher J. McDougle2,3 1Indiana University School of Medicine, Indianapolis, IN, USA 2Lurie Center for Autism, Massachusetts General Hospital, Lexington, MA, USA 3Nancy Lurie Marks Professorship in the Field of Autism, Harvard Medical School, Boston, MA, USA
 Synonyms Brand names: Anxiset E (India); Cipralex (Canada); Lexam; Lexamil; Lexapro; Seroplex

Indications According to the official prescribing information, escitalopram is FDA-approved to treat major depressive disorder (MDD) in adults and in adolescents aged 12–17 years old, both acutely and as maintenance therapy (Forest Pharmaceuticals 2011). It is also approved for the acute treatment of generalized anxiety disorder (GAD) in adults. It is not approved for children under the age of 12 years. Escitalopram is not approved for the treatment of autism spectrum disorders (ASDs). ASDs

12 years. Escitalopram 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 escitalopram 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, irritability, aggression, repetitive

observed symptoms of ASDs, such as hyperactivity, inattention, irritability, 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 Escitalopram is a selective serotonin reuptake inhibitor (SSRI). Normally, serotonin is released from the presynaptic axon terminal to travel across the synaptic cleft and attach to the postsynaptic axon terminal. Any excess serotonin remaining in the cleft is picked up by the serotonin reuptake transporter in the presynaptic axon to be degraded and recycled. It is hypothesized that a depletion of serotonin available to act on the postsynaptic axon results in symptoms

that a depletion of serotonin available to act on the postsynaptic axon results in symptoms experienced in some mood and anxiety disorders, including sadness, nervousness, guilt, loneliness, apathy, and avolition. Escitalopram attaches itself to the serotonin reuptake transporter and prevents whatever serotonin remains in the cleft from being taken back up in the presynaptic neuron. The excess serotonin is free to attach to postsynaptic receptors and exert its intended effects. Escitalopram

serotonin is free to attach to postsynaptic receptors and exert its intended effects. Escitalopram begins acting immediately to inhibit serotonin reuptake, but like other SSRIs, its antidepressant and anxiolytic effects are often not experienced for up to 6–8 weeks. This is thought to be due to gradual changes SSRIs make on serotonin receptor sensitivity. It is believed that the decreased amounts of serotonin found in mood and anxiety disorders cause the postsynaptic axon to upregulate the

of serotonin found in mood and anxiety disorders cause the postsynaptic axon 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 escitalopram enters the picture, the level of serotonin in the cleft rises. Postsynaptic receptors respond to the serotonin increase and send messages to the axon nucleus about the changes in the synaptic cleft. The

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 serotonin. These changes are gradual and are believed to take 6–8 weeks before being fully completed, reflecting the amount of time before many patients begin feeling relief from their symptoms. Like other SSRIs, escitalopram’s antagonism of the postsynaptic 5-HT2C receptor results in some of its unique therapeutic effects.

antagonism of the postsynaptic 5-HT2C receptor results in some of its unique therapeutic effects. When serotonin attaches to the 5-HT2C receptor, it blocks the release of neurotransmitters norepinephrine and dopamine in the brain. When escitalopram blocks the postsynaptic 5-HT2C receptor, norepinephrine and dopamine are instead released and exert their effect in the prefrontal cortex. The effect is activating, often leading patients to feel more energized and less fatigued, with improved

is activating, often leading patients to feel more energized and less fatigued, with improved concentration and attention. Escitalopram’s effects can also be described as anxiolytic, and it is currently FDA-approved for the treatment of GAD. Escitalopram is often considered the “quintessential SSRI” as it only contains the S enantiomer, unlike the related compound citalopram (Celexa), whose racemic makeup includes both R and S enantiomers. (Enantiomers are a pair of chemical structures that

makeup includes both R and S enantiomers. (Enantiomers are a pair of chemical structures that exist as mirror images and subsequently exert dif ferent effects.) Escitalopram’s lone S enantiomer yields a “purer” serotonin reuptake inhibition response and removes some side effects that exist in the racemic (mixed) compound. This unique property allows for escitalopram to be more efficacious at lower doses given the absence of a potentially interfering R enantiomer. The lack of CYP450 enzyme

lower doses given the absence of a potentially interfering R enantiomer. The lack of CYP450 enzyme interactions makes escitalopram one of the best tolerated of the SSRIs, although it is not yet generic and therefore can be expensive.

Specific Compounds and Properties (S)-1-[3-(dimethylamino)propyl]-1-(4-fluorophenyl)-1,3-dihydroisobenzofuran-5-carbonitrile.

Clinical Use (Including Side Effects) FDA-Approved Clinical Uses In adults, escitalopram is FDA-approved to treat MDD, both acutely and as maintenance therapy, and for the acute treatment of GAD (Forest Pharmaceuticals 2011). Per the official prescribing information, escitalopram is typically started at 10 mg once daily for the treatment of MDD with a recommended maximum of 20 mg daily. If the dose is increased to 20 mg once daily, it should occur after a minimum of 1 week. For GAD in adults,

is increased to 20 mg once daily, it should occur after a minimum of 1 week. For GAD in adults, the recommended starting and target dose is 10 mg once daily. The goal of treatment is complete remission of symptoms and prevention of future relapses, so escitalopram is taken both throughout and in between clinical relapses (Stahl 2009). Although escitalopram can eliminate symptoms while being taken, it does not cure MDD or GAD, and symptoms can reoccur after the medicine has been stopped. If

it does not cure MDD or GAD, and symptoms can reoccur after the medicine has been stopped. If escitalopram is to be discontinued, a gradual dose reduction is recommended (Forest Pharmaceuticals 2011). After the first episode of depression in the treatment of adults with MDD, escitalopram should be taken for 1 year following symptom relief (Stahl 2009). After the second or any subsequent episodes of depression, treatment with escitalopram may be indefinite to avoid relapse of symptoms. Treatment

of depression, treatment with escitalopram may be indefinite to avoid relapse of symptoms. Treatment of GAD may also require indefinite treatment. Regarding the pediatric population, escitalopram is FDA-approved for the treatment of MDD in adolescents aged 12–17 years (Forest Pharmaceuticals 2011). There are no clinically approved uses of escitalopram for children under the age of 12 years. In the treatment of adolescent MDD, escitalopram is typically started at 10 mg once daily with a

In the treatment of adolescent MDD, escitalopram is typically started at 10 mg once daily with a recommended maximum of 20 mg daily (Forest Pharmaceuticals 2011). Per the official prescribing information, if the dose is increased to 20 mg once daily, it should occur after a minimum of 3 weeks.

Clinical Uses of Escitalopram in Autism Spectrum Disorders Regarding pediatric populations, there is minimal evidence to suggest the effectiveness of escitalopram in children and adolescents with autism. Interestingly, antidepressants have been the most commonly prescribed psychotropic medications in treating symptoms associated with ASDs (Aman et al. 2005). Given the frequent use of SSRIs in autism, it is imperative that prescribing clinicians balance the benefit of such medications in lieu of

it is imperative that prescribing clinicians balance the benefit of such medications in lieu of their side effects. In 2004, the FDA released safety warnings about the increased risk of suicide-related behaviors in children and adolescents taking SSRIs, which subsequently curtailed the prescribing of SSRIs to this population (Nemeroff et al. 2007). The decision to use escitalopram in the treatment of established clinical indications that may co-occur with autism should therefore be made on an

of established clinical indications that may co-occur with autism should therefore be made on an individual basis by the treating practitioner after careful consideration of the available data. There are currently no published randomized, placebo-controlled trials examining the use of escitalopram in treating symptoms associated with ASDs. Therefore, minimal conclusions can be drawn about the efficacy of escitalopram in treating both adults and children with ASDs. Among the available research, a

of escitalopram in treating both adults and children with ASDs. Among the available research, a study by Owley et al. (2005) attempted to shed light on this subject. This prospective, open-label study included 28 children (25 males, 3 females) diagnosed with an ASD (71% with autistic disorder) between the ages of 6 and 17 years. They received escitalopram over the course of 10 weeks, which was increased to a maximum dose of 20 mg/day as tolerated. This study concluded that escitalopram was

increased to a maximum dose of 20 mg/day as tolerated. This study concluded that escitalopram was “useful in treating some difficulties associated with pervasive developmental disorders (PDDs)” as evidenced by a 61% response rate, improvement in the areas of irritability (the most improvement), hyperactivity, lethargy, stereotypy, and inappropriate speech, and “significant improvement” via the Clinical Global Impressions scale. Again, a prescriber should be cautious in generalizing these results

Global Impressions scale. Again, a prescriber should be cautious in generalizing these results to the larger population of patients with ASDs given the study’s design and small sample size which limit its interpretation.

Side Effects Escitalopram is often considered the most tolerated of the SSRIs due to its simplified chemical structure, which potentially results in “purer” inhibition of the serotonin transporter and fewer cytochrome P450 enzyme-mediated drug interactions (Stahl 2008). Stimulation of serotonin receptor subtypes (5-HT2A, 5-HT2C, 5-HT3, and 5-HT4) in various parts of the brain likely causes many of the SSRIs’ observed side effects. A small amount of increased synaptic serotonin shortly after

of the SSRIs’ observed side effects. A small amount of increased synaptic serotonin shortly after initiating therapy is often enough to cause some side effects, even if the clinical benefit is not yet apparent to the patient. Therefore, it is possible that side effects may be experienced earlier than symptom relief when first starting treatment with escitalopram (Stahl 2008). Side effects experienced may also be dose dependent (i.e., they increase as the dose increases) or time dependent (i.e.,

may also be dose dependent (i.e., they increase as the dose increases) or time dependent (i.e., they start right after taking the medication but diminish with time) (Stahl 2009). 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 in children, adolescents, and young adults (ages 18–24) with MDD and other psychiatric disorders (Forest

adolescents, and young adults (ages 18–24) with MDD and other psychiatric disorders (Forest Pharmaceuticals 2011). Such risk should be carefully considered when prescribing escitalopram in the pediatric and young adult population. Escitalopram is currently not approved for use in children younger than age 12 years. According to Stahl (2009), gastrointestinal side effects are common and can include decreased appetite, nausea, diarrhea, constipation, or dry mouth. Sexual dysfunction is a common

decreased appetite, nausea, diarrhea, constipation, or dry mouth. Sexual dysfunction is a common side effect in both males and females and is due to the effect of increased serotonin in both the brain and the region of the spinal cord regulating sexual response. In males, this includes delayed ejaculation, erectile dysfunction, and decreased sexual desire. In women, this includes decreased sexual desire and anorgasmia. Central nervous system side effects include insomnia or sedation, agitation,

desire and anorgasmia. Central nervous system side effects include insomnia or sedation, agitation, tremors, headache, and dizziness or lightheadedness. Patients with undiagnosed bipolar or psychotic disorders may be vulnerable to the activating properties of escitalopram, resulting in hypomania, mania, or psychosis. Patients may also experience vasodilation, dry mouth, diaphoresis, or abnormal vision. Increased serotonin can lead to diminished dopamine release, which may lead to emotional

vision. Increased serotonin can lead to diminished dopamine release, which may lead to emotional flattening, apathy, and cognitive slowing in some patients. Escitalopram has not been shown to result in clinically important body weight changes (Forest Pharmaceuticals 2011). Of note, SSRIs have been found to yield side effects in people with ASDs, particularly agitation, hyperactivity, aggression, and insomnia (Posey et al. 2006). Extrapyramidal symptoms (Sokolski et al. 2004) and hypomania

and insomnia (Posey et al. 2006). Extrapyramidal symptoms (Sokolski et al. 2004) and hypomania (Damore et al. 1998) have also been observed in case reports. These results are limited by a lack of placebo-controlled studies, although there is some evidence to suggest that children with ASDs may be more likely to develop such side effects relative to adults with ASDs (Posey et al. 2006).

ESCS ▶Early Social-Communication Scales (ESCS)  ESP ▶Evaluation of Sensory Processing  Establishing Operations Susan A. Mason Services for Students with Autism Spectrum Disorders, Montgomery County Public Schools, Silver Spring, MD, USA

Definition Establishing operations (EOs) are “events that alter the value of a reinforcer” (Michael 1982). EOs are sometimes called motivating operations (see MOs) (Vargas 2009). EOs can be conditioned or unconditioned. They may exist in many forms and often are reliant on states of deprivation; however, it is important to note that just as deprivation is experienced throughout the day, aversive stimulation is also common in our environment. Vargas (2009) noted, “Aversive situations are

stimulation is also common in our environment. Vargas (2009) noted, “Aversive situations are establishing operations for avoidance/escape behaviors.” Another form of establishing operation is known as “value altering.” In this situation, a stimulus or set of stimuli function to make the reinforcer more reinforcing. For example, effective advertising increases the desire to have the product being advertised; advertising is not reliant on a state of deprivation, and in a sense, it may create an

advertised; advertising is not reliant on a state of deprivation, and in a sense, it may create an aversive situation if everyone else has the item that is advertised and the person who does not have the item stands out because they are “different.” Key components of EOs are that an establishing operation “precedes the response it is functionally related to and it increases the effectiveness of a particular stimulus change as reinforcement” (Peterson 1978). In sum, an establishing operation

a particular stimulus change as reinforcement” (Peterson 1978). In sum, an establishing operation determines what a person wants at any given time, and it is dynamic in nature because establishing operations is always changing (Cooper et al. 2007).

Historical Background Historically, Skinner (1953) introduced the concept of EOs in his first publications when he wrote about a “third variable”; however, it was Keller and Schoenfeld (1950) who first coined the term “establishing operations” (Vargas 2009). Establishing operations have been discussed extensively in the literature on verbal behavior and are independent variables that have been present in the study of applied behavior analysis since its inception. Experimental analysis of

present in the study of applied behavior analysis since its inception. Experimental analysis of behavior and applied behavior analysis have both been concerned with complex ways of arranging reinforcers to change behavior (Bailey and Burch 2002).

Rationale or Underlying Theory As stated earlier, EOs change the value of a reinforcer. In a classroom situation, this is especially important as we want learners to acquire new skills. Ensuring specific states of deprivation, or altering the value of a reward such that it functions as a powerful reinforcer, enhances the potential for positive learning outcomes. In the field of autism, establishing operations play an important part for increasing verbal behavior, especially when teaching manding

operations play an important part for increasing verbal behavior, especially when teaching manding (requesting). When there is a strong establishing operation in place, there is an increased likelihood that the target behavior will be demonstrated in order to access the reinforcer. Accessing the reinforcer, in turn, strengthens the response and increases the likelihood that it will occur again under the same or similar conditions.

Goals and Objectives As noted previously, the goal of using EOs is to alter the value of a reinforcer such that the target response will be more likely to occur. Use of EOs increases the effectiveness of a particular stimulus change as reinforcement. EOs play an important role in behavior change.

Treatment Participants Studies that examine the effects of EOs have been executed and replicated for years and have focused on many different populations in the research from animals to human beings. The examination of EOs has been particularly prevalent in the research conducted on verbal behavior and, of late, has included studies focused on teaching persons with autism spectrum disorders to request desired items. Research has also focused on aberrant behaviors of persons with severe

to request desired items. Research has also focused on aberrant behaviors of persons with severe disabilities who engage in self-injury, aggression, and pica (McGill 1999).

Treatment Procedures EOs have been included in such treatment procedures such as (a) extinction, (b) noncontingent reinforcement, (c) multicomponent treatment packages, (d) social attention (behavioral momentum), (e) functional communication training, (f) naturalistic/incidental language training, and (g) social-positive, social-negative, and automatic reinforcement (McGill 1999).

Efficacy Information Large quantities of research exist to point to the efficacy of EOs within the context of reinforcer delivery. Researchers have demonstrated the salience of student choice in increasing the value of a reinforcer (Mason and Egel 1995; Mason et al. 1989; Lerman et al. 1997), varying the presentation of the reinforcer (Egel 1980, 1981), states of deprivation versus satiation (Volmer and Iwata 1991), properties of sensory stimuli as reinforcers (Ferrari and Harris 1981; Rincover

and Iwata 1991), properties of sensory stimuli as reinforcers (Ferrari and Harris 1981; Rincover and Newsom 1985), attention as an establishing operation and reinforcer during functional analysis (Fisher et al. 1997), teaching students with autism to mand for social information (Shillinsburg et al. 2016; Gutierrez et al. 2007), and effects of conditioned establishing effects on stereotypy (Lanovaz et al. 2014). Each of these studies has demonstrated that EOs are intimately linked to what a

et al. 2014). Each of these studies has demonstrated that EOs are intimately linked to what a person wants at any given time, and in so doing, establishing operations affect the potency of the reinforcer.

Outcome Measurement Current outcome measures for EOs support their importance across a variety of research applications. Quantitative data collected during research regarding EOs has repeatedly proven that EOs have an impact on behavior change. EOs have been examined in the context of teaching language and communication to students with autism as well as other disabilities. They also have been examined within the context of other studies of verbal behavior as well as reduction of aberrant

examined within the context of other studies of verbal behavior as well as reduction of aberrant behaviors such as self-injury, pica, and aggression. Although the bulk of research that has been conducted involves single-subject research design, the quantity of replication across behaviors, subjects, and settings speaks to the validity of EOs in the context of examining reinforcers and reinforcement.

Qualifications of Treatment Providers Although not explicitly stated in the research, persons who provide reinforcers in the context of teaching and/or behavior change projects should be knowledgeable in the field of applied behavior analysis and/or experimental analysis of behavior. Careful examination of the effects of any behavior change procedure should be closely monitored through data collection and analysis; modifications should be implemented according to data analysis. As such, qualified

and analysis; modifications should be implemented according to data analysis. As such, qualified behavior analysts are providers that can use EOs within the context of educational procedures and behavior change procedures. Special education and general education teachers and paraprofessionals are capable of implementing reinforcement procedures under the guidance of a qualified behavior analyst.

Estate Planning John W. Thomas Independent Educational Consultant, Durham, NC, USA Quinnipiac University School of Law, Hamden, CT, USA  Definition In General “Estate planning” refers to one’s instructions for the distribution of assets after one’s death, and includes the establishment of a will and/or trusts, and the gifting of property. Estate planning also includes preparing a plan for the care of a child who will need assistance after the parents or other caregivers have died.

Planning for Children with Disabilities, Generally Thoughtful estate planning for children with disabilities utilizes all resources, private and public, to optimize the child’s security and quality of life. Actors involved in the planning process should include the parents and other caregivers, social workers, disability law lawyers, financial planners, and others who possess relevant skills. Subjects of the estate plan should include economic resources, living arrangements, caregiver

Subjects of the estate plan should include economic resources, living arrangements, caregiver selection, and estate management.

Planning with Private Assets Private assets include all property, both real and personal, and life insurance. Private assets can be managed through the creation of trusts and the designation of a manager or conservator of the funds. The trusts instruments can include living trusts, created while the parents and/or caregivers are alive, or testamentary trusts, created upon death. One can direct distribution of assets by will.

Planning with Public Assets Public assets include Medicaid, which covers health care, and Supplemental Security Income (SSI), which provides “a minimum income” for qualifying individuals, including the disabled. Federal law defines “disabled” for purposes of SSI eligibility as, “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last

impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months.” Social Security also provides benefits relevant to estate planning for one’s disabled child. The program provides benefits to an adult child “when that parent retires, becomes disabled, or dies.” The child must have a disability that manifested before the age of 22, be unmarried, and have been dependent on the person who earned the Social

before the age of 22, be unmarried, and have been dependent on the person who earned the Social Security benefits.

Estrogens (Female Sex Hormones) ▶Sex Hormones  Ethics Pat Walsh Centre of Medical Law and Ethics, Dickson Poon School of Law, Somerset House East Wing, Kings College London, London, UK

Definition Broadly speaking, ethics is the philosophical study of how we ought to live and what kinds of people and societies we ought to be or become. While the term sometimes refers to the systematic study of reasoning about how we ought to act often called moral philosophy, ethics is also concerned with matters of the most fundamental practical import. Central among its questions are those to do with how, as individuals and societies, we ought to treat others, why we ought to treat them in

do with how, as individuals and societies, we ought to treat others, why we ought to treat them in that way, how we should evaluate the motives underlying actions, and our responsibility for the predictable consequences of our actions and policies. The various answers to questions of this sort often depend on different general viewpoints drawn from moral theories such as deontology or consequentialism or from various religious perspectives, all with their different metaethical and ontological

or from various religious perspectives, all with their different metaethical and ontological assumptions. In addition to this philosophical input, reflection on many ethical issues, such as those raised by autism spectrum disorders, should be informed to a large extent by empirical research in order to identify and clarify what the relevant issues are. However, a continuing lack of knowledge about the biological causes of autism and its neurobiological bases means that there is a corresponding

the biological causes of autism and its neurobiological bases means that there is a corresponding uncertainty about the identification and resolution of the moral issues specific to autism and about how much illumination can be drawn from more general and established ethical discourses such as those concerning disability rights or reproductive ethics. Given the current state of knowledge about autism, there are actual and emergent ethical issues relating to its diagnosis and categorization, its

there are actual and emergent ethical issues relating to its diagnosis and categorization, its prevention and cure, its treatment, and its associated research practices and agenda. All of these ethical concerns tend to have both conceptual and empirical aspects.

Historical Background As a neurobiological developmental condition, what we now call autism has almost certainly always existed in the human population. However, it was only identified as a distinct condition in the mid-twentieth century. Hence the concept of autism has a relatively short history. From the 1940s until the 1980s, autism was understood as a categorical condition affecting a relatively small number of people and characterized by a distinctive set of behavioral features such as

small number of people and characterized by a distinctive set of behavioral features such as severe delays in language, impaired cognitive skills, and a profound lack of emotional contact with others. The goal of therapy at that time was largely to “free” the child from the shell of isolation imposed by autism. Later, this psychological account was replaced by the idea of autism as a biologically based problem. Treatment and research strategies changed accordingly while preserving the goal,

based problem. Treatment and research strategies changed accordingly while preserving the goal, assumed to be ethically straightforward, of its remediation. In the last three decades, a new body of knowledge has emerged from studies documenting the complex pattern of strengths as well as weaknesses present in autism and from autobiographical writings by people with autism, such as Temple Grandin. The introduction in the 1980s of the idea that autism is best understood as a spectrum condition

The introduction in the 1980s of the idea that autism is best understood as a spectrum condition was an attempt to capture the heterogeneity of autism and the many ways it is experienced by those affected and remains hugely influential in thinking about autism (Wing 1981). Currently a growing appreciation by researchers of the sheer heterogeneity of autism and the speculative nature of much of the science in this area has led some to suggest that rather than one unique phenomenon, there may be

science in this area has led some to suggest that rather than one unique phenomenon, there may be different “autisms,” with different underlying biological processes and developmental pathways (Happe et al. 2006; Volkmar et al. 2009). Some even suggest that “autism” could be understood as an umbrella term for numerous different conditions (Coleman and Gillberg 2012). Clearly, then, while autism is not a new condition (or range of conditions), the understanding and concept of autism are

autism is not a new condition (or range of conditions), the understanding and concept of autism are relatively new, still evolving, and currently quite contested – all of which reservations enter into the ethical debate about autism.

Current Knowledge One of the major difficulties in identifying and clarifying the ethical issues raised by autism is the sheer range of ways in which the condition manifests itself. Unfortunately, the general public remains largely unaware of this level of complexity. An increasing current cultural fascination with autism is fed by representations of it established by books like The Curious Incident of the Dog in the Night-Time and iconic films like Rainman, where the savantism of the main

Incident of the Dog in the Night-Time and iconic films like Rainman, where the savantism of the main autistic character has led many people to believe that people with autism generally possess similarly unusual talents. In reality, the majority of diagnosed individuals sit at different points along the spectrum at different times and in different contexts, rather than occupying a static position at or near its extreme ends. Among the possibilities the idea of a spectrum attempts to capture is

at or near its extreme ends. Among the possibilities the idea of a spectrum attempts to capture is the autistic individual who is profoundly intellectually impaired and nonverbal, the one who is extremely disabled but has unique strengths in an area such as art, music, or mathematics, or the one who is able to work effectively in solitude but is overcome by serious social difficulties when asked to work in direct contact with others. Moreover it seems the position of an individual on the

asked to work in direct contact with others. Moreover it seems the position of an individual on the spectrum is not necessarily fixed through the course of their life, because the condition is developmental and because individuals may learn social and adjustment skills that may minimize their symptoms. Adding to this complicated picture, it seems that in any given period, an individual with autism may fit behavioral descriptions of both “high” and “low” functioning, in different respects and even

may fit behavioral descriptions of both “high” and “low” functioning, in different respects and even in different settings. In comparison with other recognized disabilities then, autism seems unique in the sheer range of its symptoms and behaviors, in the relatively plastic nature of its symptoms (especially early in life), and in the possibility of movement along a wide spectrum through the course of life. Given this level of complexity, it is not surprising that the idea of a spectrum cannot

of life. Given this level of complexity, it is not surprising that the idea of a spectrum cannot capture all the variabilities in the manifestation of autism symptoms and the differences in health, developmental difficulties, and sensory problems that contribute to the different profiles of people affected by autism. Compounding the difficulties for the spectrum idea is the problematic high-functioning/low-functioning distinction it encourages. In the diagnostic context, for instance, people with

distinction it encourages. In the diagnostic context, for instance, people with autism are often viewed as occupying a point somewhere on a broad spectrum from low to high functioning, reflected by, for example, the range in IQ from severe intellectual impairment to high IQ, or in communication styles from no speech or language use to high, often eccentric articulacy, associated with the condition. Though this distinction has passed into current popular understanding and descriptions of autism,

Though this distinction has passed into current popular understanding and descriptions of autism, no such categories are mentioned in the Diagnostic and Statistical Manual of Mental Disorders (DSM), and there seems to be little scientific evidence to justify categorizing autistic people along these lines. The fact that most individuals with autism will move between these categories depending on context, circumstances, and the expectations placed on them means the distinction fails to capture an

circumstances, and the expectations placed on them means the distinction fails to capture an important reality about autism and therefore is doing little useful explanatory work. To some extent, the latest edition of the DSM (DSM-V 2013) sidesteps some of these difficulties by introducing levels of severity of autism (mild, moderate, and severe) based on social communication impairments and restricted repetitive patterns of behavior with three levels – individuals with autism may (1) require

repetitive patterns of behavior with three levels – individuals with autism may (1) require support or (2) require substantial support or (3) require very substantial support. Hence how an individual is categorized depends on his or her specific abilities to function across a broad range of contexts. Difficulties remain, however, to do with the assumption that autistic individuals function at the same level across all areas (ASAN 2017). Presumably the heterogeneity of autism described means that

level across all areas (ASAN 2017). Presumably the heterogeneity of autism described means that individuals will move between these categories of severity and necessary level of support, just as they were said to move between high and low levels of functioning. The fact of heterogeneity presents obvious difficulties for identifying appropriate medical and educational interventions, but it also hugely complicates ethical questions about how we should regard those affected by autism and how we

hugely complicates ethical questions about how we should regard those affected by autism and how we should respond to and intervene in their lives. Hence it is to be expected that any appropriate ethical judgment about autism will tend to be cautious, provisional, and open to much qualification. One example of this is provided by the process of diagnosis. Initial diagnosis may provide the occasion, whereby individuals and their families come to understand for the first time the reason for the

whereby individuals and their families come to understand for the first time the reason for the problems they have been experiencing, and importantly, it may serve as the mechanism through which they can access the range of interventions and supports that are available. On the other hand, it currently confirms someone as a person with a neurologically based disorder, with all the implications of that for how the individuals view themselves, how others view them, and how they are viewed by

of that for how the individuals view themselves, how others view them, and how they are viewed by services, teachers, employers, and so on. The clear moral seriousness of this is compounded by difficulties in making the diagnosis secure. First, in not a few cases, there will be the difficulty, implicit in the notion of a spectrum, of establishing a nonarbitrary cut off point between behavior considered “normal” or “mildly eccentric” and behavior considered “disordered.” Second, in many more

“normal” or “mildly eccentric” and behavior considered “disordered.” Second, in many more cases, the general difficulty of applying the accepted criteria with confident objectivity will be felt. The diagnosis of autism currently involves assessing an individual’s developmental history and patterns of behavior against purely behavioral criteria as set out in the internationally recognized diagnostic manuals, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V 2013) and the

diagnostic manuals, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V 2013) and the International Classification of Diseases (ICD-10 2010). Though minimal, these criteria are arrayed in complex ways such that there is no behavior or set of behaviors that unequivocally denote autism. Because the genetic and neurobiological bases of autism are as yet largely unknown, no more objective physical tests are available to the diagnostician. That lack has led to an intensive search for

physical tests are available to the diagnostician. That lack has led to an intensive search for biological markers, which, in addition to shedding light on the causes of autism, might also be clinically useful in complementing and improving its behavioral diagnosis and in enabling its earlier detection. To date, comparatively little has been achieved in identifying biomarkers with clinical utility – though if they are found, they may well pose new ethical challenges in the field of autism (Walsh

– though if they are found, they may well pose new ethical challenges in the field of autism (Walsh et al. 2011). It is clearly morally important that diagnostic dialogues should acknowledge these various difficulties and uncertainties to everyone concerned.

Asking whether those dialogues should not also include references to the positive aspects of autism brings a fundamental and profound question into focus: what value should be placed on autism as a condition, and on different aspects of the condition? Is it enough, or even correct, to characterize autism solely as a disability and, as such, something to be prevented or cured where medically and ethically possible? The challenge here is to the prevailing “deficit model” of autism propagated by

ethically possible? The challenge here is to the prevailing “deficit model” of autism propagated by the exclusively negative character of the criteria in the diagnostic manuals. The “impairment” in question is characterized by examples of “failure,” “lack,” and “stereotyped,” “repetitive,” and “abnormal” behaviors for instance. While it can be argued that is required in order to secure services, nonetheless the wholly negative characterization of autistic behavior can be seen as implicitly

nonetheless the wholly negative characterization of autistic behavior can be seen as implicitly evaluative and questionbegging, rather than scientific. Unfortunately it has enormous influence on clinicians, researchers and research agenda alike. The challenge to the deficit model also extends to the many forms of treatment and intervention that, following the reasoning that guides diagnosis, focus strongly on counteracting behaviors taken to be undesirable. Whether in diagnosis or in treatment,

strongly on counteracting behaviors taken to be undesirable. Whether in diagnosis or in treatment, there seems to be a good case for understanding, assessing and describing aspects of autism more positively: instead of deficits we find instead strong persistent interests, attention to detail, and unusual memory, as well as heightened skills that are associated with some forms of autism, such as great visual acuity, perfect musical pitch, and remarkable mathematical prowess. (Walsh 2010;

as great visual acuity, perfect musical pitch, and remarkable mathematical prowess. (Walsh 2010; Baron-Cohen et al. 2009. Nevertheless, the idea that autistic behavior can be most helpfully understood in terms of a “triad of impairments” in communication, imagination, and social interaction, which emerged in the late 1970s, has been the impetus for many influential theoretical developments (Wing and Gould 1979). Psychologists have attempted to explain each of these fundamental deficits, with the

Gould 1979). Psychologists have attempted to explain each of these fundamental deficits, with the aim of clarifying the forms of treatment that could ameliorate and compensate for them. According to one theory, people with autism lack a “theory of mind” in being unable to understand the perspectives and points of view of other people (Baron-Cohen 1995). A second “executive function” theory explains some aspects of the repetitive behaviors seen in autism as an inability to plan sequences and

some aspects of the repetitive behaviors seen in autism as an inability to plan sequences and actions (McGregor et al. 2008). A third “weak central coherence” theory is based on the idea that people with autism cannot process differences in a manner that makes them cohere into a general pattern (Frith 1989). Each of these deficit views of autism has moral as well as scientific and practical implications. Some philosophers, for instance, have taken the first of these theories in particular – the

Some philosophers, for instance, have taken the first of these theories in particular – the view that people with autism are “mindblind” – as posing a legitimate query as to whether they have the full moral status of “persons” (Barnbaum 2008). The argument draws on a putative distinction between the concepts “human being” and “person” which gained currency in bioethical debates about the moral permissibility of abortion in the 1970s. Being genetically human, it was (and is) argued, is a morally

of abortion in the 1970s. Being genetically human, it was (and is) argued, is a morally neutral fact, while the term “person” identifies those morally important features of beings, including human beings, that should guide our estimate of their moral status and, thereby, our thinking and decision-making in their regard. Features of persons said to provide reasons for regarding them as subjects of moral concern and bearers of the fundamental protection of rights vary but centrally include

of moral concern and bearers of the fundamental protection of rights vary but centrally include consciousness, self-consciousness, a capacity for rational decision-making, and a capacity to communicate. In possessing none of these characteristics, it is argued, for example, that a human fetus is not a person in this sense and that abortion may therefore be morally permissible. The same distinction has since been sometimes considered in relation to people in a persistent vegetative state and the

has since been sometimes considered in relation to people in a persistent vegetative state and the severely demented and their treatment. In regard to autism, it is suggested that the lack of a functioning theory of mind means people with autism are unable to recognize that others have beliefs, preferences, emotions, and desires independent of their own. The resulting purported lack of empathy leads to an inability to relate to others as persons and to enter into meaningful reciprocal

leads to an inability to relate to others as persons and to enter into meaningful reciprocal relationships with them. Even more fundamentally, being mindblind may mean they are not able to reflect on their own mental states. On this view of the matter, at least some autistic people fail on two of the criteria of personhood. Though undoubtedly conscious, they may not be conscious of other people in the meaningful ways central to human relationships, and they may not be self-conscious in the ways

the meaningful ways central to human relationships, and they may not be self-conscious in the ways necessary to qualify for moral personhood.

The more general question of the value to place on autism is also seen as having to engage with philosophical discussions of the conditions necessary for a good or flourishing human life. Most accounts of these conditions give a central place to the emotions, including particularly having personal relationships and a sense of affiliation with other people (Nussbaum 2006). Many of us (including many autistic people) would agree that friendship, for example, is an essential contributor to our

many autistic people) would agree that friendship, for example, is an essential contributor to our well-being and recognize that autistic people have particular difficulties in this area. However, it is sometimes argued that individuals who lack a theory of mind, like those with autism, simply cannot live a full flourishing human life because their inability to empathize compromises their friendships and their sense of affiliation with others. What might be said in response to these suggestions of

and their sense of affiliation with others. What might be said in response to these suggestions of the severe limits on the value of autistic life, said to follow from the deficit account of “mindblindness”? First, it is extremely important to remember that “mindblindness” is a metaphor, not a statement of fact, and that metaphors can be harmful and also incorrect. The most we can infer using this metaphor is that autistic people sometimes behave as if they were mindblind (Smukler 2005). Second,

metaphor is that autistic people sometimes behave as if they were mindblind (Smukler 2005). Second, if this deficit hypothesis is not valid – not correct or only partly correct – none of the ethical implications described would follow. And in fact there are many problems about the precise status of the mindblindness hypothesis, to do with its explanatory power and specificity to the case of autism, how it interacts with the other two “fundamental deficit” theories, and, crucially, whether it can

how it interacts with the other two “fundamental deficit” theories, and, crucially, whether it can incorporate and reflect the idea of a spectrum of developmental abilities and impairments (Wellman et al. 2001). At present, it may be best viewed as a metaphorical description rather than an explanation of autistic behavior or as a step on the way to a full and coherent psychological explanation of autism. But even if the “mindblindness” theory is correct, neither of the claims said to follow,

of autism. But even if the “mindblindness” theory is correct, neither of the claims said to follow, about the moral status of people with autism and the possibility of a flourishing autistic life, would necessarily follow. It is important to remember that the notion of a moral person at play here is highly stipulative, a matter of moral argument and decision rather than an empirical discovery of facts about human beings. Indeed, the long history of the idea that those who are “different from us”

about human beings. Indeed, the long history of the idea that those who are “different from us” should thereby be placed outside the circle of our moral concern or assigned a diminished level of moral status is an ignominious one. Again, accounts of a flourishing human life that assign so central a place to friendship and the emotional life may be seen as simply begging the question when it comes to people with autism. Even for non-autistic people, the need for friendship and socialization

to people with autism. Even for non-autistic people, the need for friendship and socialization fluctuates and may be quite minimal. To assume that socialization with others is so important that we cannot have well-being without it may be to buy far too much into a contemporary culture which values extrovert behavior. Furthermore, it can be seen as dangerous, for the future if not the present. Arguing that autistic people alive today have a less flourishing life than the rest of us may be a

Arguing that autistic people alive today have a less flourishing life than the rest of us may be a problem for them, but its implications may be much more fateful for a future context in which emergent genetic technologies will play a major role in reproductive decisions about whether to prevent the birth of disabled individuals. The advent of a “neurodiversity” movement led by, and giving a voice to, people on the autistic spectrum and their families and supporters has brought a sharp political

to, people on the autistic spectrum and their families and supporters has brought a sharp political edge to this ethical question of how we should value autism. Drawing on a wider political debate about disabilities and disability rights and paralleling campaigns by other disadvantaged groups to change societal perspectives of their condition, the neurodiversity movement forces attention onto the complexities and contested nature of the concept “normality,” the positive aspects of autistic

the complexities and contested nature of the concept “normality,” the positive aspects of autistic spectrum conditions, and the advantages as well as the justice of respect for cognitive differences. Autism is claimed to be simply a neurologically atypical, but not abnormal, human variation. A distinction between “neurodiverse” and “neurotypical” functioning displaces the conceptually and morally problematic distinction between “normal” and “abnormal” functioning, with the implication that we

problematic distinction between “normal” and “abnormal” functioning, with the implication that we should no longer think of autism as a condition requiring fundamental treatment, correction, or prevention. Support for this stance is sometimes drawn from the list of famous people – including Isaac Newton, Albert Einstein, Carl Jung, Immanuel Kant, Vincent Van Gogh, Bill Gates, and Andy Warhol, among others – who are deemed to have had, or to have, autistic traits. Whatever their case to case

among others – who are deemed to have had, or to have, autistic traits. Whatever their case to case legitimacy – and this may be doubted (Verhoeff 2012) – these attributions have been sufficiently plausible to contribute to a shift in the perception and representation of autism, from outright “disability” toward “difference,” while also encouraging those with autism to celebrate the distinctive strengths of their historical community. On the other hand, the neurodiversity movement’s drive to

strengths of their historical community. On the other hand, the neurodiversity movement’s drive to construct a specific autistic identity faces some possible social and philosophical challenges: for example, the claim that autistic people are specifically neurologically different – they are neurodiverse – is contentious, while there is little in the way of consensus about the etiology of autism (Ortega 2009). Similarly, the ontological claim that individuals are identical with and can be defined

2009). Similarly, the ontological claim that individuals are identical with and can be defined by their neurological traits is a claim which is currently highly contested and possibly philosophically incoherent. In any case, there is a risk to be guarded against; that emphasis on a biological basis of “difference” – a still unidentified but presumed to be “deep” basis – may inadvertently reinforce queries regarding the moral status of people with autism. There is, perhaps, such a thing as being

queries regarding the moral status of people with autism. There is, perhaps, such a thing as being “too different.” On the other side of the debate about how to value autism, an equally vocal lobby regards autism as a serious disability and supports funding of the kind of scientific research that might lead to prevention and cure. These objectives are shared by many carers of autistic people and many autistic people themselves, who claim that the neurodiversity movement underestimates the grave

autistic people themselves, who claim that the neurodiversity movement underestimates the grave effect autism has on the lives of everyone involved. It does not, and cannot, represent those so severely disabled by autism that they are incapable of speaking for themselves or the families and carers of those with severe cognitive impairments or even those high-functioning individuals who often experience acute isolation and loneliness. The disagreement between this group and the neurodiversity

acute isolation and loneliness. The disagreement between this group and the neurodiversity movement is somewhat reminiscent of the conflict within feminism in the 1960s and 1970s when there was a grassroots challenge to a feminism perceived as the expression of the needs and concerns of middle class white women alone and which ignored the different difficulties faced by some women due to race, class, nationality, poverty, level of education, and religion (Crenshaw 1991) Similarly, it might be

nationality, poverty, level of education, and religion (Crenshaw 1991) Similarly, it might be said that while an identity-based politics such as that advocated by the neurodiversity movement may be a great source of strength and community, it also runs the risk of conflating and ignoring important intragroup differences and the obstacles to be overcome because those difficulties interact in complex ways with other possible forms of oppression.

The autism research agenda is a major focus of the conflict between advocates of neurodiversity and those who view autism as a catastrophic disorder. Despite the growing influence of the neurodiversity movement, early detection, prevention, and cure still seem to be the main impetus and the overriding goals of biomedical research into autism. The National Institute of Mental Health in the United States, for example, proclaims its vision to be “a world in which mental illnesses are prevented and

for example, proclaims its vision to be “a world in which mental illnesses are prevented and cured” and names autism as one of a group of “serious, often life-threatening illnesses for which we need reliable diagnostic tests, new treatments, and effective strategies for prevention” (National Institute of Mental Health [NIMH] 2008). One of the largest autism charities in the world, Autism Speaks, declares itself “dedicated to funding research into the causes, prevention, treatment and a cure for

itself “dedicated to funding research into the causes, prevention, treatment and a cure for autism” and has donated more than $160 million to such research since its inception in 2005 (Autism Speaks 2012). The official mission statements of such research agencies also include research support for those who must live with autism – and they and their supporters are not necessarily opposed to respecting cognitive difference. It remains, however, that these seem not to be their priorities. One of

cognitive difference. It remains, however, that these seem not to be their priorities. One of the main bones of contention in this area is about whether research funding should be directed toward improving the lot of autistic people living now rather than be for the benefit of future generations of those with autism: proponents of the neurodiversity approach have little trouble suggesting research projects that would have objective practical benefit for those who live with autism, if only funds

projects that would have objective practical benefit for those who live with autism, if only funds were more equitably allocated. However, the more basic criticism from the neurodiversity perspective is that the goals of prevention, radical treatment, and cure are fundamentally misguided. The value issues here are complex. They include, but go well beyond, interpretations of the key terms. A “cure,” to start with it, ought to be rather more than something that would ameliorate the negative

“cure,” to start with it, ought to be rather more than something that would ameliorate the negative impacts of autism on affected individuals. But taken to mean something that “gets rid” of autism, it faces two distinguishable challenges. The first, relating to identity, is captured in a website statement of a view that is often expressed by those in the neurodiversity movement: “To ‘cure’ someone of autism would be to take away the person they are, and replace them with someone else” (Aspies

of autism would be to take away the person they are, and replace them with someone else” (Aspies for Freedom 2010). The obliteration of the condition is seen here as amounting to the destruction of an identity. That this view is persuasive owes much to two features of autism: first that by its cognitive nature, it has a pervasive impact on a person’s life and second that it is an early onset condition assumed to be a pre-experiential and pre-social “given,” though not manifesting itself in the

assumed to be a pre-experiential and pre-social “given,” though not manifesting itself in the very earliest years. In combination, these features imply that autism by its nature is truly deep set in those who have it and live with it. Whether it is constitutive of a person’s identity in the way suggested is an open and very difficult philosophical question. However, it seems pertinent to observe that identity, in one important sense, is something that is acquired, built up, and defined

observe that identity, in one important sense, is something that is acquired, built up, and defined progressively. So, while curing, as opposed to ameliorating, an adult’s autism may be a destructive project, if indeed it is not an incoherent one, the case is less clear where infants are the likely recipients of the cure. “Prevention,” to come to it, does not have to mean “eradication” inasmuch as its primary reference may be symptoms rather than the condition itself. So, a major goal of

as its primary reference may be symptoms rather than the condition itself. So, a major goal of research programs, whether biological or psychological, may be to identify interventions that “prevent” the more severe cognitive, behavioral, and social challenges that are often associated with autism and impact negatively on autistic individuals and their families. This prevention may be by early treatment that forestalls the significant development of these challenges or by interventions that

treatment that forestalls the significant development of these challenges or by interventions that reduce or limit their impact when they have already developed, by restoring function as much as possible. Regarding the latter, the neurodiversity lobby object to specific research and interventions aimed at “normalizing” certain autistic behaviors, such as prolonging eye contact or reducing “stimming,” where that is done for no more objectively important reason than to make the person with autism

where that is done for no more objectively important reason than to make the person with autism less visible by encouraging them to fit in with contemporary cultural norms.

The Future All discussions of autism and the ethical problems it throws up suffer from the undermining effect of uncertainty about how well autism is established as a cohesive syndrome. The Medical Research Council of Great Britain puts this uncertainty this way: “Whilst it is well known that autism involves impaired social communication, language impairment, and repetitive, stereotyped interests, it is still unknown whether this constellation of impairments is inherent in a cohesive syndrome

it is still unknown whether this constellation of impairments is inherent in a cohesive syndrome (usually called Autism Spectrum Disorder or ASD), or whether it is an artefact of diagnostic practice” (MRC 2010). Some scientists have suggested that autism is not a single large spectrum of disease but that what we call autism is in fact a group of conditions with multiple etiologies (Coleman and Gillberg 2012). Yet others question whether there is such a thing as autism in the natural biological

2012). Yet others question whether there is such a thing as autism in the natural biological world (Timimi et al. 2011) or draw attention to the way autism has emerged and developed in close relation to historical and social ideas about what constitutes acceptable and abnormal behavior (Nadeson 2005).The lack of a clear scientific, medical, and public consensus on the definition, causes, diagnosis, and treatment of autism means that many ethical issues pertaining to autism are probably still to

and treatment of autism means that many ethical issues pertaining to autism are probably still to emerge. No doubt this process cannot be hurried given that it depends on future scientific and medical developments, on an array of social, cultural, philosophical, and psychological issues and crucially on the involvement of the autistic community. Two issues of current ethical importance are identified here. The first concerns the area of intelligence testing in autism. The history of intelligence

here. The first concerns the area of intelligence testing in autism. The history of intelligence testing is, on the whole, an ignominious one in which many historical examples illustrate the fact that IQ tests merely confirm the existence of well-known social disadvantage (Gould 1996; Hayman 2000). It is said that most children with autism exhibit mild to moderate cognitive deficits with a characteristically uneven cognitive profile, though the rates of intellectual disability in autism range

uneven cognitive profile, though the rates of intellectual disability in autism range widely between 40% and 63% (Matson et al. 2008). One question that arises then concerns the precise relationship between autism and IQ levels: does level of IQ affect the range and expression of autism symptoms? Of more basic concern is the effect of mainstream deficit approaches to autism on our understanding and conceptualization of autistic intelligence. We have seen how these approaches may be criticized for

conceptualization of autistic intelligence. We have seen how these approaches may be criticized for the personal and social harm they effect. But is it also possible that they impede scientific and philosophical progress in understanding intelligence in autism? In general, IQ testing in autism is carried out in a way that shows little evidence of the much wider social debate about the general validity of IQ testing and what it tests, the equation of intelligence with IQ, and the existence of

of IQ testing and what it tests, the equation of intelligence with IQ, and the existence of different sorts of intelligence (Gardner 1983). This narrow frame of reference combined with a deficit approach to autism not only determines what is researched but may also affect test results. For example, it seems many cognitive scientists fail to appreciate how the behavioral and communication difficulties associated with autism negatively affect test performance and need not denote lower intelligence

associated with autism negatively affect test performance and need not denote lower intelligence despite low scores. And in viewing autism purely as a disabling condition, they may also not recognize that to describe and measure a possibly different cognitive style with tests designed to test what is “normal” cognition will yield results of questionable validity (Eagle 2002). The interpretation of results may also display a research bias introduced by the deficit model – when intelligence and

of results may also display a research bias introduced by the deficit model – when intelligence and talent are recognized, they are usually pathologized as “splinter skills” or “islets of ability,” and it has been shown that in tests where an autistic group outperforms the non-clinical control group, the difference is often explained not by superior ability in that area but by reference to some cognitive impairment associated with autism. It is clear that how we represent people to ourselves and

impairment associated with autism. It is clear that how we represent people to ourselves and to others often determines the outcomes of our ethical judgements about them. But the consequences of a purely deficit account of autism may also be serious and far-reaching for social justice and possibly for science itself. A second issue probably causes most consternation in many parts of the autism community, as well as being a concern to others. It is the prospect of a future range of genetic

community, as well as being a concern to others. It is the prospect of a future range of genetic technologies capable of indicating levels of risk of autism for the use in the context of reproductive decision-making. If and when they are developed, the availability of such technologies, it is feared, will lead to an avoidance of having children by those identified as at risk of conceiving autistic offspring and, beyond that, to large-scale elective abortion of fetuses deemed to be at some –

offspring and, beyond that, to large-scale elective abortion of fetuses deemed to be at some – perhaps even quite small – level of risk. Supporting the fears of proponents of neurodiversity about an agenda to eradicate autism, there is evidence to suggest that preventing the birth of individuals with disabilities that can be diagnosed prenatally seems to many an obvious step to take and is encouraged by medical professionals and bioethicists alike. Some bioethicists have even argued that there

by medical professionals and bioethicists alike. Some bioethicists have even argued that there is a moral obligation to prevent the births of disabled individuals where possible and regardless of the level and kind of disability (Savulescu and Kahane 2009). As their decision-making is likely to be influenced by available genetic information, it will be important to offer parents counseling about genetic and non-genetic risk factors; potential social, educational, and developmental outcomes; and

and non-genetic risk factors; potential social, educational, and developmental outcomes; and treatment options (Walsh et al. 2011). It will also be crucial precisely how genetic counselors communicate the probabilistic and uncertain picture derived from genetics as well as the complex and contested nature of the autistic spectrum itself, since this is also likely to have a huge impact on what parents decide. From a moral point of view, this is an extremely important issue for genetic counselors

decide. From a moral point of view, this is an extremely important issue for genetic counselors and society at large, for it has been suggested that even if individual parental decisions in this area are not eugenic, the choices on offer may be regarded as such (Sparrow 2008). Professional guidelines for genetic counselors display a strong commitment to patient autonomy particularly in regard to reproductive decisions because of a belief that parents are in the best position to know what they

reproductive decisions because of a belief that parents are in the best position to know what they should do and have a right to choose (and also, no doubt, to distance the practice of genetic counseling from questions of eugenics and the promotion of abortion). Many would agree that the final moral decision appropriately lies with the choosers among the available options – that is, the parents of the actual or potential child at risk of autism – with the hope that important ethical

parents of the actual or potential child at risk of autism – with the hope that important ethical considerations regarding, for example, the morality of abortion or how we should think about disability and disabled lives would continue to weigh heavily in the choices people make. Even this seemingly moderate point of view may be challenged however. It could be argued that just as our autonomous decisions affecting others including our children after birth are restricted by considerations of

decisions affecting others including our children after birth are restricted by considerations of harm to others, so should they be similarly restricted before birth. Should parents decide to abort a fetus identified as at risk for autism (if and when that becomes possible), their choice, it may be claimed, harms the fetus in that from the fetus’ point of view, it is better to be born autistic than not born at all. Hence the harm criterion suggests abortion in such cases is wrong (Barnbaum

than not born at all. Hence the harm criterion suggests abortion in such cases is wrong (Barnbaum 2008). It is unclear whether proponents of this view think abortion is wrong in all circumstances, wrong in all cases of disability, or wrong because it is the abortion of people with autism. However, if living an autistic life is less good than living a non-autistic life, considerations of harm would not serve to restrict those parental choices aimed at preventing the existence of autistic

would not serve to restrict those parental choices aimed at preventing the existence of autistic children (e.g., through preimplantation genetic diagnosis). What this brief discussion of the complexity of reproductive decision-making as it pertains to autism again indicates is how necessary it has become to think about how autism is and should be characterized: it seems winning the battle of words about the value of autism is not only important for setting and reorienting the research agenda

about the value of autism is not only important for setting and reorienting the research agenda but is likely to be crucial in life and death decisionmaking in the context of future reproductive choices.

Ethiopia and Autism Sebiha M. Abdullahi Child Study Center, Yale University, New Haven, CT, USA  Historical Background Historic, Economic, and Cultural History of Ethiopia Ethiopia is a country located in the Horn of Africa rich in archeological, historical, and cultural heritage. Archeological findings have mapped Ethiopia as the birthplace for humans, Homo sapiens (McDougall et al. 2005). Lucy, a hominin who lived 3.2 million years ago was discovered in 1974 in the Awash Valley, Ethiopia

a hominin who lived 3.2 million years ago was discovered in 1974 in the Awash Valley, Ethiopia (Johanson and White 1979). Ethiopia also has the highest number of UNESCO World Heritage Sites in Africa reflecting the role the region played in ancient and modern civilizations. Axum (monolithic obelisks), Fasil Ghebbi (palaces of Ethiopian sixteenth and seventeenth century emperors), Harar Jugol (walled historic city), and Konso cultural landscape and Lalibela (rock-hewn churches) (Ethiopia 2016a)

historic city), and Konso cultural landscape and Lalibela (rock-hewn churches) (Ethiopia 2016a) are a few of the many sites. Ethiopia is also home to natural wonders like the Ethiopian Highlands, the Roof of Africa that form the largest continuous mountain through which the Blue Nile courses (Henze 2000). These mountains are inhabited by endemic animals like the gelada baboon, walia ibex, and the Ethiopian Simien fox. On the south-eastern part of the country in the Oromia region lies the Sof

Ethiopian Simien fox. On the south-eastern part of the country in the Oromia region lies the Sof Omar Cave, which is the largest system of caves in Africa (Robson 1967). In addition to its historical heritage, Ethiopia is notable for its strong resistance against Italian occupation that was used as a model for anti-colonial resistance across the continent. Ethiopia was in the forefront during the formation of Organization of African Unity that is now African Union (El-Ayouty and Zartman 1984).

formation of Organization of African Unity that is now African Union (El-Ayouty and Zartman 1984). Addis Ababa, Ethiopia’s capital city continues to be the center for African peace and development efforts as it serves as the headquarters of United Nations Economic Commission for Africa, the African Union, and the Pan African Chamber of Commerce and Industry. Ethiopia has one of the fastest growing economy in Africa with a GDP per capita of $1800 (Ethiopia 2016b). Ethiopia has a population of

economy in Africa with a GDP per capita of $1800 (Ethiopia 2016b). Ethiopia has a population of approximately 100 million people (Ethiopia 2016b). Eighty percent of the population lives in rural areas primarily engaged in agriculture. Ethiopia’s very diverse population comprises of more than 80 ethnic groups. There are about 88 individual languages spoken in Ethiopia. Amharic is the official national language and has its own unique script that grew out of the Ge’ez, ancient liturgical language

language and has its own unique script that grew out of the Ge’ez, ancient liturgical language (Roncevic 2005). Oromo, most widely spoken language in Ethiopia, Somali, Tigrigna, and Afar are regional official working languages (Ethiopia 2016b). English is the major foreign language taught in schools and universities (Ethiopia 2016b). Several sign languages that are derived from signed Amharic and English languages are primarily used in schools for those with hearing disabilities throughout the

English languages are primarily used in schools for those with hearing disabilities throughout the nation (Morgan 2009).

Education in Ethiopia Traditional education and literacy associated with the Coptic Church and mosques in Ethiopia dates back over 1000 years (Ridley and Bridges 1998). Western style education was introduced to Ethiopia in 1908 (Tessema 2007). Despite a long history of education in the country, the literacy rate in Ethiopia is still low at 49.1% as of July 2016 (Ethiopia 2016b). The low literacy is partially due strain on the availability and access to resources by the rapid rise in population

is partially due strain on the availability and access to resources by the rapid rise in population and increasing burden of those under the age of 15 which currently accounts for about 40% of the total population (Ethiopia 2016b). In fact, in many areas, the student to teacher ratio can be greater than 40:1. In addition to the teacher shortage, another obstacle for early education in Ethiopia is the lack of training in education; indeed, only 48% of primary school teachers are trained

is the lack of training in education; indeed, only 48% of primary school teachers are trained (Education for All: Global Monitoring Report 2014). Furthermore, not only is primary education sparse and of poor quality, but special needs education is also practically nonexistent. Out of 285 schools with special needs classes, none were autism specific and they were evaluated and deemed between very poor and satisfactory by the Federal Ministry of Education (Burton 2016). There are no school

very poor and satisfactory by the Federal Ministry of Education (Burton 2016). There are no school programs specifically designed for children with autism within public schools. Hence, children with developmental disorders and disabilities are often confined to staying at home. In fact, it is estimated that only 4% of children with special needs receive primary schooling (Burton 2016).

Mental Health in Ethiopia Research about and services available for mental health in Ethiopia is very scarce. Only 1.7% of the national health expenditure in Ethiopia was spent on mental health (Russo 2007). Amanuel Hospital is the only psychiatric hospital in Ethiopia. Mental health services and human rights issues are not regulated by external reviewing committees and Amanuel Hospital itself serves as both a service provider and a regulator of its services. There are 53 outpatient and 6

serves as both a service provider and a regulator of its services. There are 53 outpatient and 6 inpatient psychiatric facilities around the country, and they lack specific programs for children and adolescents (WHO-AIMS Report on Mental Health System in Ethiopia 2006). As of 2007, there were only 17 psychiatrists (all of whom work in the capital city, Addis Ababa) and 190 psychiatric nurses in the entire country (Russo 2007). During medical training education in Ethiopia, medical students spend

entire country (Russo 2007). During medical training education in Ethiopia, medical students spend only 2% of their curriculum learning about mental health issues and how to manage them (WHO-AIMS Report on Mental Health System in Ethiopia 2006). In terms of physicians, all primary care physicians are able to prescribe psychotropic medicines without restrictions in Ethiopia (WHO-AIMS Report on Mental Health System in Ethiopia 2006).

Autism in Ethiopia Autism and other neurodevelopmental disorders in Ethiopia are largely viewed as a curse. Children with these disorders are often hidden from the society. In addition to the lack of special services for them, their isolation often lead to their poor health and nutrition. It is estimated that about 500,000 children with autism live in Ethiopia (Burton 2016). Research and services for mental health have focused on severe mental disorder disorders so far (Burton 2016). National

for mental health have focused on severe mental disorder disorders so far (Burton 2016). National Mental Health Strategy has started an initiative to educate primary health-care workers about mental health disorders but neurodevelopmental disorders have yet to be included in the training (Burton 2016). In the two child and adolescent psychiatric clinics in Ethiopia, neurodevelopmental disorders are the second leading cases after epilepsy (Burton 2016).

Legal Issues, Mandates for Service Various national and international initiatives have been underway in the past two decades to improve the services for those with mental health problems and disabilities. In accordance with the UN Convention on the Rights of Persons with Disabilities, the National Plan of Action for Inclusion of Persons with Disabilities 2010–2020 was designed and finalized in 2011 to grant equal rights to people with disability and ameliorate their standard of living in

in 2011 to grant equal rights to people with disability and ameliorate their standard of living in Ethiopia (WHO-AIMS Report on Mental Health System in Ethiopia 2006). In addition, to improve the quality and the availability of primary education in Ethiopia, United Nations Educational, Scientific and Cultural Organization (UNESCO) has made a five-year plan to train about 6000 well-qualified teachers, 155 of which would be trained in special needs education (WHO-AIMS Report on Mental Health System

155 of which would be trained in special needs education (WHO-AIMS Report on Mental Health System in Ethiopia 2006). World Health Organization Mental Health Gap Action Program (WHO mhGAP) is also preparing a parent training program for those with children with neurodevelopmental disorders to address the misunderstandings about the disorders and help them interact with and manage challenging behaviors of their children (Burton 2016). Health Education and Training + (HEAT+) project that was

behaviors of their children (Burton 2016). Health Education and Training + (HEAT+) project that was launched in 2012 is primarily aimed at helping health workers to be able to identify neurodevelopmental disorders in the field (Burton 2016). Health extension workers, who provide health education about topics like hygiene and contraception, are being trained to detect and support those with mental health conditions by the Ethiopian Federal Ministries of health and Education and the Open

mental health conditions by the Ethiopian Federal Ministries of health and Education and the Open University (UK) (Burton 2016).

Overview of Current Treatments and Centers The Nia Foundation’s Joy Center was founded by Zemi Yenus in 2003. She opened the school after seeing how schools were unwilling to accept her son with autism. Now the center provides services for about 80 children and offers diagnosis and assessment for autism (Burton 2016). Ms. Yenus has been in the forefront of campaigns to spread awareness about autism. Nehemiah Autism Center was established in 2010 by ReachAnother Foundation and Rahel Abayneh in

Nehemiah Autism Center was established in 2010 by ReachAnother Foundation and Rahel Abayneh in Addis Ababa. ReachAnother Foundation, founded by Dr. Marinus Koning, is a US based, nonprofit organization that aims to improve healthcare and special education services in underserved populations in Ethiopia. Ms. Abayneh like Ms. Yenus was determined to open an autism center because she could not find services for her son with autism. When the center was first opened, its teachers were previous

find services for her son with autism. When the center was first opened, its teachers were previous kindergarten teachers, parent volunteers of children with autism, and psychology graduates from Addis Ababa University. The center primarily uses principles of Applied Behavior Analysis (ABA) on the children attending the center. Currently, 60 children receive services at Nehemiah. The Bethel Adama Center for Autism was established in 2015 in Adama in the Oromiya region by the ReachAnother

Adama Center for Autism was established in 2015 in Adama in the Oromiya region by the ReachAnother Foundation. It is the first center established outside the capital city and it currently has four teachers who provide services to 20 children. The Bright Autism Center was recently established in May of 2016 in Hawassa, in the Southern Nations, Nationalities and Peoples’ region of Ethiopia also by ReachAnother Foundation. The center closely collaborates with the Hawassa University Psychology

by ReachAnother Foundation. The center closely collaborates with the Hawassa University Psychology Department and University of Dilla Special Education Department to train teachers and spread awareness about autism in the local community.

Overview of Research Directions Given that autism has only recently garnered attention, not much research has been conducted about autism in Ethiopia. In fact, the first autism-related research project was conducted as part of the Health Education and Training + (HEAT+) project. The study showed the limited amount of diagnostic and education services for children with autism in Ethiopia (Tekola et al. 2016). The prevalence of neurodevelopmental disorders, the clinical manifestation of autism in

al. 2016). The prevalence of neurodevelopmental disorders, the clinical manifestation of autism in this subset of population, and the effectiveness and the application of autism diagnosis and treatment methods within the context of Ethiopia are yet to be studied.

Overview of Training The four autism centers have not only been sources of services for children with autism and other neurodevelopmental disorders but also have been critical in autism training in Ethiopia. Professionals through the ReachAnother Foundation and Addis Ababa University Psychology Departments make visits to these centers and train the teachers in speech pathology, occupation therapy, and ABA therapy.

Ethnography ▶Qualitative Versus Quantitative Approaches  Evaluation of a Transition to University Program for Students with Autism Spectrum Disorder
Jiedi Lei1,2, Mark Brosnan1, Chris Ashwin1 and Ailsa Russell1 1Centre for Applied Autism Research, Department of Psychology, University of Bath, Bath, UK
2Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA

2Yale Child Study Center, School of Medicine, Yale University, New Haven, CT, USA
 Definition The University of Bath Autism Summer School (UBASS) is a university transition program that introduces autistic students to life at university through the lens of work, rest, and play. The program aims to help students make a more informed decision when selecting and applying to universities in the UK.

Historical Background Autism at University In recent years, there has beenan increase in autistic students’ participation in postsecondary education. For example, in the UK, the widening participation agenda set up by the government aims to increase accessibility to postsecondary education for students from more disadvantaged backgrounds, as well as students with physical disabilities and other forms of developmental and specific learning disabilities, and has helped increased participation

forms of developmental and specific learning disabilities, and has helped increased participation rate in higher education for autistic students from 7.4% in 2009/2010 to 10.7% in 2014/2015 (Connell-Smith and Hubble 2018). However, despite an overall increased participation rate, the transition to university can be an especially turbulent process for many autistic students. Previous studies that have investigated students’ mental health and well-being at university have found that up to 71% of

have investigated students’ mental health and well-being at university have found that up to 71% of autistic students reported symptoms of anxiety, 53% reported loneliness, and 47% reported experiencing symptoms of depression (Gelbar et al. 2014), as well as increased rates of suicidal ideation and attempts (Jackson et al. 2018a). In the USA, it is estimated that only 35% of autistic students can complete their postsecondary education, which is lower than 38% of graduation rate for students

can complete their postsecondary education, which is lower than 38% of graduation rate for students with other disabilities and 51% of typically developing peers (Fisher and Hood 1987). Similarly, in the UK, fewer autistic students graduated from university with 2:1 or first-class honors degree (62.8%) compared to students with other forms of disabilities (66%) and typically developing peers (68.1%) (Lucas and James 2018). Furthermore, for many autistic students, university does not necessarily

(Lucas and James 2018). Furthermore, for many autistic students, university does not necessarily guarantee a safe passageway to employment following graduation. In the UK, within 6 months of completing their degree, autistic students are more than twice (18.5%) as likely to be unemployed compared to students with other disabilities (7.2%) and almost four times as likely to be unemployed compared to their typically developing peers (5.1%) (AGCAS Disability Task Group 2014). With a growing number

their typically developing peers (5.1%) (AGCAS Disability Task Group 2014). With a growing number of autistic students facing the potential transition to postsecondary education, it is important for university stakeholders and transition services to provide informational, practical, and emotional support during the transition process to both the students and their family/caregivers and help make an informed decision as to whether or not university may be the right choice for each young person

an informed decision as to whether or not university may be the right choice for each young person in question. In addition, the poor retention, graduation, and employment prospects for autistic students transitioning to university have called for more research to better understand the challenges associated with transitioning to postsecondary education (Jackson et al. 2018b), in order to facilitate universities and transition services to develop support plans and interventions to address

universities and transition services to develop support plans and interventions to address students’ unique needs and vulnerabilities when transitioning to university.

Understanding Students’ Strengths and Vulnerabilities Compared to their peers, autistic students often struggle in the complex university social setting. Although having poor social communication skills is one of the core diagnostic criteria of autism spectrum disorder (ASD) (American Psychiatric Association 2013), many autistic adults and young people also experience co-occurring anxiety, with a lifetime prevalence rate for any disorders being between 27% and 79% (Hollocks et al. 2019; Kent

a lifetime prevalence rate for any disorders being between 27% and 79% (Hollocks et al. 2019; Kent and Simonoff 2017), as well as elevated rates of social anxiety, marked by having a persistent fear of being in one or more social situations that can lead to increased social avoidance (American Psychiatric Association 2013). Therefore, many autistic students may be less successful in developing a new social network at university and making friends, due to compounded social communication

a new social network at university and making friends, due to compounded social communication difficulties as a result of both autism and social anxiety (Adreon and Durocher 2007; Dipeolu et al. 2014). Many autistic students also have restricted interests and preference for routine that make them less capable of adapting to changes in schedule when transitioning to university, resulting in additional distress (Dipeolu et al. 2014). In addition, many autistic individuals experience deficits in

distress (Dipeolu et al. 2014). In addition, many autistic individuals experience deficits in executive functioning skills (such as planning, organization, and working memory), which is associated with poor adaptive functioning, accounting for one’s ability to initiate a range of activities essential for independent living ranging from socialization and communication skills such as initiating social contact with others to daily practical living such as cooking, self-care, and time and finance

contact with others to daily practical living such as cooking, self-care, and time and finance management (Pugliese et al. 2015; Sparrow et al. 2005). Furthermore, many students also experience sensory difficulties such as hypersensitivity to light and noise at university (Longtin 2014), and around 31% of autistic students have reported that their transition plans and accommodations at university have failed to address their sensory needs sufficiently (Sarrett 2018). Another issue for many

have failed to address their sensory needs sufficiently (Sarrett 2018). Another issue for many autistic students to consider when transitioning to university is related to diagnosis disclosure (Adreon and Durocher 2007). As students leave their supportive family environment when transitioning to university, learning to self-advocate can be very important for securing necessary resources and support services on campus to facilitate their independent living on campus (Giarelli and Fisher 2013). In

services on campus to facilitate their independent living on campus (Giarelli and Fisher 2013). In addition, typically developing students often show increased acceptance and perceived many socially awkward behaviors displayed by autistic students more positively when made aware of the other’s autism diagnosis (Matthews et al. 2015), further highlighting possible social benefits of diagnosis disclosure among peers. Finally, in contrast to many challenges in the social and daily living domain

among peers. Finally, in contrast to many challenges in the social and daily living domain faced by autistic students at university, academic studies can often be an area of relative strength (Anderson et al. 2018; Geller and Greenberg 2009; Jackson et al. 2018a). University often provides autistic students with an opportunity to focus on their area of special interest, for which they often display a greater depth of knowledge compared to their typically developing peers (Geller and Greenberg

a greater depth of knowledge compared to their typically developing peers (Geller and Greenberg 2009). Autistic students often also demonstrate more systematic way of thinking that is more logical and rational compared to their typically developing peers (Baron-Cohen et al. 2009), as well as paying more attention to detail (Happé 1997), which can be advantageous in subjects in the fields of science, technology, engineering, and mathematics (STEM). Helping autistic students to better recognize

technology, engineering, and mathematics (STEM). Helping autistic students to better recognize and utilize their strengths at university can help them become highly skilled professionals in these disciplines, which are particularly attractive for many employers in finance, engineering, and scientific industries and thus help increase their employment rate following graduation (Shattuck et al. 2012).

Interventions Supporting Student Transition to University To date, interventions aimed at supporting autistic students to transition to university have largely included contacts (e.g., Shmulsky et al. 2015) and campus-based events that help provide information for students considering and seeking to apply to university (e.g., Retherford and Schreiber 2015) and peer support during early stages of the actual transition (e.g., Littlefield 2010). The content for the majority of pre-transitional

of the actual transition (e.g., Littlefield 2010). The content for the majority of pre-transitional programs are developed to address autistic students’ concerns identified through qualitative studies, such as meeting coursework requirements, disability awareness on campus, social skills and social relationships, availability of practical and emotional support, organizational difficulties such as time management and problem-solving skills, sensory challenges, and mental health concerns (Cai and

time management and problem-solving skills, sensory challenges, and mental health concerns (Cai and Richdale 2016; Camarena and Sarigiani 2009; Mitchell and Beresford 2014; Van Hees et al. 2015; White et al. 2016). Participation rate in postsecondary education for students who have either actively taken part in transition planning (61%), as well as those who have received instruction specifically focused on transition planning (74%), is almost two to three times greater compared to students who

focused on transition planning (74%), is almost two to three times greater compared to students who did not participate in transition planning (36%) or receive transition-planning instructions (24%) (Chiang et al. 2012; Wei et al. 2016), thus highlighting the importance of pre-transitional planning to increase higher education accessibility among autistic students. In addition to increasing participation rates, developing a well-informed and useful pre-transition package to aid autistic

participation rates, developing a well-informed and useful pre-transition package to aid autistic students transitioning to university should also (1) serve as a platform for offering insights into university life to help autistic students make a more informed decision regarding university and (2) help students recognize their support needs which can be communicated to the relevant stakeholders and transition services and to help develop more personalized support plan for transitioning to

and transition services and to help develop more personalized support plan for transitioning to university. The University of Bath Autism Summer School (UBASS) is an annual pre-transitional residential program running since 2012 that emphasizes on helping autistic students experience firsthand what university life is like, through various sessions structured around the themes of “work,” “rest,” and “play.” A summary of the UBASS program, as well as students’ feedback and evaluation from the first

“play.” A summary of the UBASS program, as well as students’ feedback and evaluation from the first 5 years (2013–2017), has been published (Lei et al. 2018) and is summarized below, with future directions for research and practice highlighted.

Current Knowledge University of Bath Autism Summer School (UBASS) Program The Autism Summer School program is delivered across 3 days on a campus-based university, including two overnight stays in student accommodation on campus. Students aged 16+ who hold a diagnosis of autism from a clinical professional seeking to learn more about university are eligible to apply using the online application system. Each year, around 20–30 students attend the Autism Summer School. Prior to arrival at the

system. Each year, around 20–30 students attend the Autism Summer School. Prior to arrival at the summer school, students are contacted and asked to complete some questionnaires surrounding their worries and concerns associated with transitioning to university, self-report levels of social anxiety, as well as self-reports on their social communication skills and level of autism identity. Parents are also contacted regarding students’ medical information, as well as additional dietary and other

are also contacted regarding students’ medical information, as well as additional dietary and other requirements. The questionnaires collected inform the program administrators to make reasonable adjustments for the students prior to their arrival. The summer school curriculum is developed to introduce students to sample different aspects of typical university life through the lens of “work,” “rest,” and “play” and to help promote self-care and well-being when at university. All sessions are

and “play” and to help promote self-care and well-being when at university. All sessions are delivered face-to-face in a group setting, with varying group sizes depending on nature of the session. A more detailed description of the sessions offered under each theme is shown in Table 1. With the exception of two, all remaining sessions are prepared and delivered by academic and clinical staff in the Department of Psychology or staff from the disability and careers service at the campus

in the Department of Psychology or staff from the disability and careers service at the campus university, who all have extensive experience working with autistic students at university. The two remaining sessions include (1) employment session delivered by an external employer who have an autism at work program and informs students about potential internship and career development opportunities alongside their studies, as well as what adjustments students can request to facilitate their

alongside their studies, as well as what adjustments students can request to facilitate their application process, and (2) experience at university session delivered by autistic students who are either currently at or have recently graduated from either undergraduate or graduate studies. Clinical psychologists (both licensed and in training) delivered the anxiety-related psychoeducation sessions. Beyond the structured timetabled sessions, many structured and unstructured social opportunities

Beyond the structured timetabled sessions, many structured and unstructured social opportunities were also embedded into the program, to

Social Skills  The Social Skills Improvement System (SSiS; Gresham and Elliott 2008) Rating Scales assist professionals in screening and classifying students ages 3–18 years suspected of having sig-nificant social skills deficits. The SSiS Classwide Intervention Program and SSiS Inter-vention Guide are manualized treatment pro-grams for eliminating or reducing social skill deficits identified on the SSiS Rating Scales. The SSiS uses a multirater (parents, teachers, and students with at least

the SSiS Rating Scales. The SSiS uses a multirater (parents, teachers, and students with at least third-grade reading ability) approach that provides a comprehensive examination of seven areas of prosocial skills (communication, cooperation, assertion, respon-sibility, empathy, engagement, and self-control) and five areas of problem behaviors (internalizing, externalizing, bullying, hyperac-tivity/inattention, and autism spectrum). The instrument yields norm-referenced scores based on a national

and autism spectrum). The instrument yields norm-referenced scores based on a national sample representative of the 2006 US Census. Given that autism is characterized by impaired social interactions, problems with ver-bal and non

empirical support for ABI and similar interventions (Hepting and Goldstein 1996; Milagros-Santos and Lignugaris-Kraft 1997; Rule et al. 1998). That is, examples of ABI found in the literature differ quite a bit procedurally, even when called the same thing. Nevertheless, there are numerous studies that have found positive effects from implementing ABI to teach a variety of behaviors, e.g., social skills, picture naming, instruction following, and counting (Pretti-Frontczak et al. 2003). The

skills, picture naming, instruction following, and counting (Pretti-Frontczak et al. 2003). The bulk of the studies summarized by Pretti-Frontczak et al. investigated ABI within classroom settings. Few of the studies compared ABI to other approaches, such as direct instruction interventions. The advantage of ABI is not necessarily seen during skill acquisition. However, better results tend to be seen in the demonstrations of the generalized use of those skills (e.g., Losardo and Bricker 1994).

seen in the demonstrations of the generalized use of those skills (e.g., Losardo and Bricker 1994). When teaching strategies are not embedded in activities frequently, then progress on children’s targeted objectives tends to be diminished. Milagros-Santos and Lignugaris/Kraft (1997) provide an analysis of instructional features that are likely to affect learning of new skills.

ABI also has been investigated in parent training programs (McWilliam 2010b; Woods et al. 2004). For example, Woods et al. taught caregivers to implement teaching strategies within daily routines; their toddlers with developmental disabilities learned communication skills and demonstrated generalization across routines to varying extents. This work was extended to children with autism (Kashinath et al. 2006). ABI has broad applicability to teaching a variety of skills, using a variety of

et al. 2006). ABI has broad applicability to teaching a variety of skills, using a variety of intervention agents in a variety of natural contexts or activities. Although evidence indicates that ABI approaches can be effective, procedures for selecting functional goals and teaching them effectively in everyday activities are increasingly being developed. Moreover, as these treatment approaches are better refined, comparative studies will be needed to investigate whether ABI is shown to increase

better refined, comparative studies will be needed to investigate whether ABI is shown to increase generalization and improve functioning in natural environments in comparison to other approaches.

**Outcome Measurement** Any IEP goals that are amenable to use in natural environments could serve as outcome measures. ABI promotes the identification of functional goals that enhance the ability of the child to participate in daily activities with more meaningful involvement and independence. Thus, the outcome measures that are targeted and measured cut across developmental domains (e.g., communication, social, cognitive, adaptive or self-help, and motor skills). Most often, the occurrence

social, cognitive, adaptive or self-help, and motor skills). Most often, the occurrence of the targeted behaviors is captured through observational data collection. Sometimes, the environment is arranged to enhance the opportunities for the behavior of interest to be demonstrated.

**Qualifications of Treatment Providers** ABI has been implemented by a variety of individuals, typically with training provided by an early intervention professional. Parents, caregivers, general and special educators, related service personnel, and paraprofessionals have been responsible for implementing ABI.

**Acuity**  **Definition** Given that detailed or locally oriented perception is a central tenet of visual cognition in autism (Behrmann et al. 2006; Dakin and Frith 2005; Mottron et al. 2006), several studies have systematically assessed the spatial resolution of vision in autism by measuring visual acuity (VA). VA is generally defined as the ability to perceive targets such as optotypes, letters, or numbers of a specific size at a given distance. For example, “normal” Snellen VA, often

letters, or numbers of a specific size at a given distance. For example, “normal” Snellen VA, often referred to as 20/20 vision, is a clinical term that reflects a person’s ability to recognize a target (i.e., letter E) from 20 ft away when its defining spatial features (i.e., spacing of lines composing an E target) are separated by a visual angle of 1 arc minute. Several studies have assessed VA in ASD using a variety of clinical screening charts. For the most part, VA has been demonstrated to

in ASD using a variety of clinical screening charts. For the most part, VA has been demonstrated to be unremarkable in ASD when assessed with either the Crowded LogMAR test (Milne et al. 2009), chart and/or computer-based Landolt-C optotype paradigms (de Jonge et al. 2007; Keita et al. 2010; Tavassoli et al. 2011; but see Ashwin, Ashwin, Rhydderch, Howells, and Baron-Cohen (2009) with replies from Bach and Dakin (2009)), or Snellen-type visual charts (Falkmer et al. 2011). These demonstrations

Bach and Dakin (2009)), or Snellen-type visual charts (Falkmer et al. 2011). These demonstrations of unaffected visual acuity in ASD suggest that detailed or locally oriented visual perception in autism is not of peripheral or ocular origin.

A more direct method of assessing the spatial resolution of the visual system is to measure contrast sensitivity as a function of spatial frequency, thus defining a contrast sensitivity function (CSF) that describes the variation of sensitivity over a range of spatial frequencies (defined by cycles per degree or cpd) from detailed (or high-spatial frequency) to less-detailed (or lower spatial frequency) information. Surprisingly, relatively few direct assessments of contrast sensitivity are

frequency) information. Surprisingly, relatively few direct assessments of contrast sensitivity are available for ASD. de Jonge et al. (2007) assessed contrast sensitivity using the Vistech contrast sensitivity chart, which included spatial frequency gratings of 3, 6, 12, and 18 cpd. Albeit nonsignificant, their ASD group demonstrated increased sensitivity from the mid- to high-spatial frequencies. This trend was consistent with the electrophysiological findings of Jemel et al. (2010), who

This trend was consistent with the electrophysiological findings of Jemel et al. (2010), who demonstrated that mid- and high-frequency gratings elicited similar brain responses in their ASD group only (responses segregated in control group), suggesting a response bias toward detailed or high-spatial frequency information. However, in the only published behavioral assessment of contrast sensitivity function (CSF) in ASD to date, Koh, Milne, and Dobkins (2010) demonstrated unremarkable visual

function (CSF) in ASD to date, Koh, Milne, and Dobkins (2010) demonstrated unremarkable visual acuity, peak spatial frequency, peak contrast sensitivity, and contrast sensitivity at a low-spatial frequency in a small group of participants with ASD.

**Adapin**  **Definition** Usually used in the treatment of depression and/or anxiety, Adapin is a member of a class of drugs known as tricyclic antidepressants (TCAs). TCAs work by blocking noradrenaline and serotonin reuptake by presynaptic neurons, resulting in a greater availability and accessibility of these neurotransmitters to the postsynaptic neuron. Long-term administration can result in an increase in sensitivity and number of adrenergic and serotonergic receptors on the postsynaptic

an increase in sensitivity and number of adrenergic and serotonergic receptors on the postsynaptic neuron. Serotonin is an inhibitory neurotransmitter that is heavily involved in mood and emotion regulation and has been found to be elevated in the whole blood and platelets of ASD patients. However, the use of TCAs in children and adolescents has been fairly limited due to its narrow therapeutic index and high toxicity profile. TCAs have low receptor specificity and, in addition to their

index and high toxicity profile. TCAs have low receptor specificity and, in addition to their reuptake inhibitory effects, exert antagonistic effects on histamine H2, serotonin 5-HT2, α1-adrenergic, and muscarinic acetylcholine receptors. This results in a large array of side effects including, but not limited to, nausea, drowsiness, weakness, dry mouth, changes in appetite or weight gain, constipation, blurred vision, increased sweating, and decreased sexual drive. Evidence for on-target

blurred vision, increased sweating, and decreased sexual drive. Evidence for on-target effects and the reduction of autistic symptoms is limited and conflicting. Accordingly, a Cochrane review in 2012 did not recommend the use of tricyclic antidepressants for the treatment of individuals with autism spectrum disorder. Doxepin has been FDA-approved for the treatment of insomnia.

**Adaptive Behavior**  **Definition** The American Association on Mental Retardation (AAMR 2002) defines adaptive behavior as “the collection of conceptual, social, and practical skills that have been learned by people in order to function in everyday lives.” Adaptive behavior is best understood as the degree to which individuals are able to function and maintain themselves independently and meet cultural expectations for personal and social responsibility at various ages. As such, adaptive

cultural expectations for personal and social responsibility at various ages. As such, adaptive behavior involves the person’s physical skills, cognitive ability, affect, motivation, culture, socioeconomic status, family, and environment. Persons with autism spectrum disorders often demonstrate a discrepancy between intellectual potential and consistently displayed adaptive skills. Assessing adaptive behavior can include standardized adaptive behavior scales, observation, interview, or review

behavior can include standardized adaptive behavior scales, observation, interview, or review of anecdotal records. Some commonly used ratings include the Vineland Adaptive Behavior Scales, Second Edition; Scales of Independent Behavior – Revised (SIB-R); Adaptive Behavior Assessment System – Second Edition (ABAS-II); and the Battelle Developmental Inventory, Second Edition (BDI-2).

**Adaptive Behavior Assessment System, Second Edition**  **Description** The Adaptive Behavior Assessment System is a reliable, valid, and norms-based questionnaire assessment of adaptive behavior, or the personal and social skills necessary for everyday independent living. Because children and adults with autism spectrum disorders often struggle with practical independent functioning and effective interactions with others, the assessment of adaptive behavior is a crucial part of a

and effective interactions with others, the assessment of adaptive behavior is a crucial part of a comprehensive assessment of individuals on the spectrum. Now in its second edition, the ABAS-II can be used for individuals across the life span, with norm referenced scores available for ages 0–89. Like other assessments of adaptive behavior, this assessment can be used with individuals with autism spectrum disorders to determine how an individual is responding to day-to-day demands compared to

spectrum disorders to determine how an individual is responding to day-to-day demands compared to others his/her age, to develop treatment and training goals, to determine eligibility for services and Social Security benefits, and to assess the capability of adults to live independently. The test may also be used to assess adaptive behavior in individuals with other impairments, including intellectual disability, learning difficulties, or ADHD. The test is published by the Psychological

intellectual disability, learning difficulties, or ADHD. The test is published by the Psychological Corporation, and the authors are Patti Harrison & Thomas Oakland.

The ABAS-II assesses three general areas of adaptive behavior: Conceptual, Social, and Practical. These domains were selected according to guidelines of the American Association of Intellectual Disabilities. These three domain areas are divided into ten specific adaptive skill areas, organized according to the specifications of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which is published by the American Psychiatric Association and provides standard criteria for the

which is published by the American Psychiatric Association and provides standard criteria for the classification of mental disorders. These ten skill areas are Communication (e.g., “speaks clearly), Community Use (e.g., “finds the restroom in public places”), Functional Academics (e.g., “tells time correctly, using a watch or a clock with hands”), Health and Safety (e.g., “carries scissors safely”), Home or School Living (e.g., “sweeps the floor”), Leisure (e.g., “invites others home for fun

Home or School Living (e.g., “sweeps the floor”), Leisure (e.g., “invites others home for fun activity”), Self-Care (e.g., “washes hands with soap”), Self-Direction (e.g., “controls temper when disagreeing with friends”), Social (e.g., “says ‘please’ when asking for something”), Work (e.g., “performs tasks at work neatly”). The Work skills area is optional. Communication, Functional Academics, and Self-Direction areas are a part of the Conceptual domain; Social and Leisure skill areas are a

and Self-Direction areas are a part of the Conceptual domain; Social and Leisure skill areas are a part of the Social domain; and Self-Care, Home or School Living, Community Use, Health and Safety, and Work are a part of the Practical domain. The Motor skills area is not a part of any domain score.

The ABAS-II is available in a five forms, all which assess the same areas of adaptive functioning. Parents of children aged 5–21 may use a rating form; a new form for parents of children aged 0–5 was developed for the second edition. There is also a teacher rating form for individuals aged 5–21, as well as a teacher/day care form for children aged 2–5 (also new to the second edition). Finally, there is an adult form for individuals aged 16–89, with which adult individuals can report on their

there is an adult form for individuals aged 16–89, with which adult individuals can report on their own adaptive behavior. Forms include between 193 and 241 items, and items are rated on a 4-point scale, with 0 ¼ is not able, 1 ¼ never when needed, 2 ¼ sometimes when needed, and 2 ¼ always or almost always when needed. An additional category is “check if you guessed,” which helps examiners determine how much confidence to place in responses. The questionnaire takes approximately 15–20 min to

how much confidence to place in responses. The questionnaire takes approximately 15–20 min to complete and around 5 min to score. Scoring assistance software can aid with the speed and accuracy. A limited amount of research with the ABAS-II in individuals with autism confirms patterns of adaptive behavior deficits similar to those observed with other assessments of adaptive behavior. For example, in a sample of 40 individuals with high-functioning autism and 30 typically developing controls,

in a sample of 40 individuals with high-functioning autism and 30 typically developing controls, individuals with autism demonstrated lower general adaptive composites, as well as specific deficits in social skills. The general adaptive composite was negatively associated with autism symptomatology (Kenworthy et al. 2010).

**Historical Background** The AdaptiveBehavior Assessment System, Second Edition, is a revision and a downward extension of an earlier first-edition version of the test by the same authors, the Adaptive Behavior Assessment System, published just 3 years prior in 2000. The update was in response to the 2002 AAMR guidelines that suggested looking within conceptual, social, and practical domains of adaptive behavior. The ABAS-II added domain scores for these three areas. Whereas the first edition

adaptive behavior. The ABAS-II added domain scores for these three areas. Whereas the first edition was available only for school-aged children and adults, the ABAS-II has two new Infant/Preschool forms to allow for administration to parents of children aged 0–5.

**Psychometric Data** The ABAS-II provides scores based on age-related norms, based on a standardization sample that drew from the US Census data from 1999 to 2000. Thirty-one age groups were assessed for each form, with at least 100 participants per group. In addition to normative samples, the standardization included 20 clinical samples, including a clinical sample for autism. However, these clinical samples were small and not randomly selected, so no autism-specific norms exist for the

clinical samples were small and not randomly selected, so no autism-specific norms exist for the ABAS-II.

A General Adaptive Composite, with a mean of 100 and a standard deviation of 15, is yielded as an overall measure of an individual’s adaptive skills. In the second edition, domain composite scores, also with means of 100 and a standard deviation of 15, are yielded. Skill area standard scores have a mean of 10 and a standard deviation of 3. Confidence intervals and descriptive classifications are also provided. Finally, for individuals up to 22 years, age-based percentile ranks and age

are also provided. Finally, for individuals up to 22 years, age-based percentile ranks and age equivalencies are yielded. The GAC has a lowest possible score of 40, and the GAC ceiling for 0–5 is 160, and for adults and children over 8 it is 120.

In addition to scaled scores, information about relative strengths and weaknesses by skill area as well as base rates in the standardization sample are provided. On the school-aged parent and teacher data from the standardization sample, girls scored significantly higher than boys on the General Adaptive Composite, and this gender effect was stronger in teachers; however, gender accounted for only a small amount of variance (.6% and 2.7%). These gender differences are consistent with some

only a small amount of variance (.6% and 2.7%). These gender differences are consistent with some other adaptive behavior tests (e.g., the Adaptive Behavior Inventory for Children, which showed similar patterns), though not all measures of adaptive behavior (e.g., the Vineland Adaptive Behavior Scales does not demonstrates sex differences). Effects of race were also observed in the standardization sample, with white children scoring higher than Latino children. Again, an ethnicity main effect

sample, with white children scoring higher than Latino children. Again, an ethnicity main effect has been observed in some but not all other assessments of adaptive behavior. Given that adaptive behavior is defined according to the cultural norms and expectations regarding independent behavior and social functioning, sensitivity to cultural context is a critical part of the sensitive assessment of adaptive behavior.

The ABAS-II has shown very strong reliability. Most skill areas have internal consistency of .90 or higher. In studies examining test-retest reliability over a 2-week period, General Adaptive Composite correlations were near or above .90 for all versions of the ABAS-II. The test also demonstrates adequate validity. Factor analysis supports both the three-factor model and the GAC factor. The factor model is similar for boys and girls (Wei et al. 2008). Comparisons to other adaptive behavior

model is similar for boys and girls (Wei et al. 2008). Comparisons to other adaptive behavior measures, such as the Vineland, show correlations ranging between .70 and .84, demonstrating concurrent validity. Clinical validity studies have also suggested that the ABAS-II is highly sensitive when differentiating clinical and nonclinical samples. Correlations with the Wechsler Intelligence Scale for Children-Third Edition, the Wechsler Adult Intelligence Scale-Third Edition, and the Wechsler

for Children-Third Edition, the Wechsler Adult Intelligence Scale-Third Edition, and the Wechsler Abbreviated Scale of Intelligence were medium-sized, confirming that intelligence and adaptive functioning are inter-related but distinct constructs. No predictive validity studies are known. Items were selected from an original pool of 1500 generated items, from which a third to a half were used in standardization sampling. The test has been criticized for requiring a high level of reading

in standardization sampling. The test has been criticized for requiring a high level of reading comprehension for some items (seventh grade) and for its relatively low ceiling (120) (Sattler 2002).

**Clinical Uses** Adaptive skills generate opportunities for independence and meaningful social interaction. Given that core deficits in social and communication skills are at the heart of a diagnosis of Autism Spectrum Disorder, measurement of the adaptive skills that children and adults are using – and where they may need remediation – is a key component of assessment and treatment planning for individuals with ASDs. Indeed, some conceptualizations of developmental disabilities suggest more

individuals with ASDs. Indeed, some conceptualizations of developmental disabilities suggest more emphasis be placed on adaptive skills than on IQ, as adaptive skills are modifiable and capture real-world implementation, whereas intellectual ability does not necessarily capture the skills an individual is using in a day-to-day context (Schalock 1999).

Individuals with autism, particularly high-functioning ones, typically have a profile that includes adaptive skill levels that are lower than intelligence levels. The ABAS-II provides a categorical and age-normed assessment of individuals’ adaptive skills, which can be used to guide treatment planning. The ABAS-II can also be used to generate a profile of an individual’s adaptive skills, so that areas of relative strength and weakness can be better understood. For example, if an individual is

areas of relative strength and weakness can be better understood. For example, if an individual is shown to demonstrate deficits in a skill area (e.g., Social), then specific behavioral interventions can be built around the specific deficits documented in testing. Assessing adaptive behaviors across a range of settings (e.g., home and school) can also provide information about the generalization of skills. Moreover, using a measure like the ABAS-II over time can document progress in adaptive

of skills. Moreover, using a measure like the ABAS-II over time can document progress in adaptive skills or capture students’ response to intervention, a critical component of special education service planning. The ABAS-II can also be used to determine eligibility for services, such as Social Security and special education services under the Individuals with Disabilities Education Act. A documented deficit in adaptive behavior is necessary for a diagnosis of intellectual disability, which

deficit in adaptive behavior is necessary for a diagnosis of intellectual disability, which often co-occurs with ASDs. Investigating profiles of adaptive skill strengths and weaknesses using the ABAS can also be helpful in differential diagnosis, as children and adults on the spectrum tend to have particular adaptive skill deficits in social and communication areas of adaptive skills.

**Adaptive Behavior Predicting Postschool Outcomes**  **Definition** **Adaptive Behavior** The construct of adaptive behavior has been defined by both the American Association on Intellectual and Developmental Disabilities (AAIDD) and the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as the collection of conceptual, social, and practical skills that are learned and performed by people in their everyday lives. These three domains of adaptive behavior – conceptual, social, and

people in their everyday lives. These three domains of adaptive behavior – conceptual, social, and practical skills – have been consistently identified through factor analytic work on adaptive behavior (Tassé et al. 2012). Conceptual skills refer to language abilities, reading and writing, numbers, time, and money concepts.

**Postschool Outcomes** Researchers have struggled over the years to define what it means for a person with autism to be successful in adulthood (Henninger and Taylor 2013). As adults with autism have increasingly moved out of institutions and into the community, the criteria for positive outcomes have shifted from merely avoiding life in an institution to independently functioning within the community. Three key areas of postschool outcomes are regularly discussed in the literature on

the community. Three key areas of postschool outcomes are regularly discussed in the literature on disabilities at large, including ASD: postsecondary education, employment, and independent living. In their systematic review of evidence-based predictors of successful postschool outcomes, the National Technical Assistance Center on Transition (NTACT) identified these three areas as the critical outcomes of interest for students with disabilities (Test et al. 2009). Postsecondary education

outcomes of interest for students with disabilities (Test et al. 2009). Postsecondary education participation is defined as enrollment in any vocational or technical school, 2-year or community college, or 4-year college. Competitive employment – defined as a job at which a majority of the other workers do not have a disability and the person with a disability is earning at least minimum wage – is generally considered the gold standard for employment among young adults with ASD. Residential

– is generally considered the gold standard for employment among young adults with ASD. Residential independence refers to living on one’s own or with a roommate, partner, or spouse (i.e., not with caregivers or paid staff, although support from these individuals may be provided). In the literature specific to autism spectrum disorder (ASD), social relationships are often considered another important component of postschool outcomes, including having at least one meaningful friendship with a

component of postschool outcomes, including having at least one meaningful friendship with a person in the same age group who is not a paid staff member (Henninger and Taylor 2013).

**Historical Background** **Transition to Adulthood for Youth with ASD** The transition from secondary school to adulthood is a growing area of concern within the ASD community. In fact, many researchers describe this period of time as a “services cliff” because of the steep decline in services that are available after a student with ASD graduates high school (Roux et al. 2015). It has been well-documented that adults with ASD have poor outcomes compared to their peers without disabilities and

that adults with ASD have poor outcomes compared to their peers without disabilities and peers with other types of disabilities. Data from the National Longitudinal Transition Study-2 (NLTS2) – a large, nationally representative, 10-year longitudinal study of transition-aged youth receiving special education services – is commonly used to summarize the postschool outcomes of youth with ASD and other kinds of disabilities (Newman et al. 2011; Roux et al. 2015). These data show that among young

kinds of disabilities (Newman et al. 2011; Roux et al. 2015). These data show that among young adults with autism ages 23–26, just 44% attended any type of postsecondary education, less than all other disability types except intellectual disability and multiple disabilities. Seventeen percent lived independently, which was lower than all other disability types except multiple disabilities. Twenty-four percent had no socialization with peers, either in person or on a phone call, in the past

percent had no socialization with peers, either in person or on a phone call, in the past year, which was lower than all other disabilities studied. Just 63% of the sample with ASD had worked for pay since leaving high school, which was lower than all other disability types except multiple disabilities. Additionally, the majority of people with ASD who had a paid job were working part-time jobs for approximately minimum wage. In many cases, it took 2 years or more to find a job after graduating

approximately minimum wage. In many cases, it took 2 years or more to find a job after graduating high school. Findings also show that young adults with ASD have difficulty maintaining a job relative to their peers with other kinds of disabilities. These negative outcomes exist even among adults with ASD who have average or above-average intelligence. Despite average cognitive abilities, they are struggling to engage in typical adult activities. Based on these outcomes, it appears these young

struggling to engage in typical adult activities. Based on these outcomes, it appears these young adults do not have the skills or supports they need to succeed in their adult lives. Therefore, it is crucial to understand the factors that predict a successful transition.

**Adaptive Behavior Profiles in ASD** Research indicates that adaptive skills are likely a key factor in the successful transition to adulthood for youth with ASD. Children and adults with ASD have unique adaptive behavior profiles. It is relatively common for people with ASD to have “scatter” in their skills, meaning that scores on some domains are much higher than others. Research consistently finds that people with ASD have the lowest scores in socialization, as measured by the Vineland

finds that people with ASD have the lowest scores in socialization, as measured by the Vineland Adaptive Behavior Scales (e.g., Kanne et al. 2011). However, some studies have described an “autism profile” in which daily living skills are an area of relative strength, while others find that daily living skills are a relative weakness and communication is the greatest strength. Regardless of the relative strengths and weaknesses found in particular papers, it is important to remember that they

relative strengths and weaknesses found in particular papers, it is important to remember that they are just that: relative. It is well-established that scores on all domains of adaptive behavior for people with ASD are low relative to typically developing peers. In fact, this pattern of low adaptive behavior scores in people with ASD is a robust finding that exists independent of cognitive functioning. There is a well-documented gap between IQ and adaptive behavior scores in this population.

There is a well-documented gap between IQ and adaptive behavior scores in this population. Adaptive functioning often lags behind cognitive level, especially among those with average or above-average IQ (Alvares et al. 2019; Kraper et al. 2017), such that even people with ASD who have high IQ scores often have significantly impaired adaptive behavior. This gap has been shown to emerge as early as 12–36 months of age and widen throughout childhood development and into adolescence (Bradshaw et

as 12–36 months of age and widen throughout childhood development and into adolescence (Bradshaw et al. 2019; Kanne et al. 2011; Klin et al. 2007), with gaps as large as 2 standard deviations in some studies (Klin et al. 2007). The gap between IQ and adaptive behavior is largest in people with ASD who are older and who have higher IQs (Kanne et al. 2011). In fact, some studies have found that this gap only exists in those with average intelligence and have found adaptive skills commensurate

this gap only exists in those with average intelligence and have found adaptive skills commensurate with mental age in those with intellectual disability (Kanne et al. 2011). While much of the research on adaptive behavior in ASD has been done on children, some studies have documented plateaus or declines in adaptive behavior scores through adolescence (Klin et al. 2007; Meyer et al. 2018), where continued improvements are expected. It is important to note that this does not suggest adolescents

continued improvements are expected. It is important to note that this does not suggest adolescents with ASD are losing adaptive skills, but rather that their rate of progress is slowing down relative to their same-aged peers without ASD. Importantly, age is not associated with either ASD symptom severity or cognitive abilities, so these declines in skill development are found only with regard to adaptive behavior. Therefore, deficits in functional skills are decreasing despite these other two

adaptive behavior. Therefore, deficits in functional skills are decreasing despite these other two variables remaining the same (Kanne et al. 2011). This trend is worrisome and suggests the need for increased intervention on adaptive skills specifically as children with ASD enter adolescence.

**Current Knowledge** In order to improve transition practices and promote positive outcomes for young adults with ASD, it is necessary to understand the factors that influence these outcomes. In the broader disability literature, there is evidence that adaptive behavior skills predict postschool outcomes. For instance, in their systematic review of transition literature across all federal special education disability categories, Test et al. (2009) found that students with more self-care and

education disability categories, Test et al. (2009) found that students with more self-care and daily living skills were more likely to participate in all three postschool outcomes of interest: postsecondary education, independent living, and employment. They also found that students with better social skills had improved outcomes in postsecondary education attendance and employment. In a sample of participants with intellectual disability, Dell’Armo and Tassé (2019) found that adaptive

sample of participants with intellectual disability, Dell’Armo and Tassé (2019) found that adaptive behavior variables (social skills, academic performance, and functional skills) were more predictive of postschool outcomes than parent expectations or demographic factors such as race, household income, and parent education level. In a sample with ASD, adaptive behavior – particularly the Daily Living Skills subscale of the Vineland Adaptive Behavior Scales – was most closely correlated with

Living Skills subscale of the Vineland Adaptive Behavior Scales – was most closely correlated with positive adult outcomes (Farley et al. 2009). Taken together, all of this research suggests that adaptive behavior is likely an important variable in predicting postschool outcomes in ASD, much like in the broader disability population.

Unfortunately, there is relatively little research investigating the effects of adaptive behavior on postschool outcomes. Review papers on predictors of outcomes (e.g., Kirby et al. 2016) have identified relatively few adaptive behavior variables being studied. Much of the research that does exist uses data from the National Longitudinal Transition Study-2 (NLTS). These data are beneficial for studying postschool outcomes as they are longitudinal data that were collected over a period of 10

studying postschool outcomes as they are longitudinal data that were collected over a period of 10 years. Participants were enrolled in high school at the start of the study and had left high school by the end of the 10 years. Therefore, the data allows researchers to not only describe postschool outcomes but to investigate variables from earlier time points that may be associated with those outcomes. However, a limitation of NLTS2 data is that a standardized adaptive behavior measure was not

However, a limitation of NLTS2 data is that a standardized adaptive behavior measure was not administered to participants. Therefore, researchers interested in studying adaptive behavior must attempt to use existing variables as a proxy for adaptive behavior (e.g., Dell’Armo and Tassé 2019). Despite this shortcoming, the longitudinal nature of the dataset makes it one of the best available datasets for exploring variables related to postschool outcomes.

Secondary analyses using NLTS2 data have provided further insight into how adaptive behavior predicts postschool outcomes. In a sample of students with autism, Chiang et al. (2012) found that academic performance – which would fall under the conceptual domain of adaptive behavior – was a significant predictor of enrollment in postsecondary education. Similarly, Wei et al. (2013) found that young adults with ASD who had higher levels of basic conceptual skills (i.e., telling time, counting

adults with ASD who had higher levels of basic conceptual skills (i.e., telling time, counting change, reading and understanding signs) were more likely to enroll in postsecondary education. These same basic conceptual skills, along with conversation ability, have also been associated with social participation outcomes. Orsmond et al. (2013) found that young adults with ASD who had lower levels of all these skills were less likely to see friends, be called by friends, and be invited to

levels of all these skills were less likely to see friends, be called by friends, and be invited to activities (i.e., were more likely to be socially isolated). In terms of employment, Roux et al. (2013) found greater levels of these same basic conceptual skills were associated with greater odds of paid employment, as were greater levels of conversational ability. Another study determined that social skills were a significant predictor of employment after leaving high school (Chiang et al.

social skills were a significant predictor of employment after leaving high school (Chiang et al. 2013).

Although studies of adult outcomes do not typically measure psychiatric symptoms, they are important in this population because research suggests that people with ASD experience co-occurring mental health conditions at much greater rates than in the general population (Simonoff et al. 2008). In the only study investigating this topic, Kraper et al. (2017) found that the size of the gap between IQ and adaptive behavior was significantly related to comorbid psychopathology, such that those with

and adaptive behavior was significantly related to comorbid psychopathology, such that those with greater discrepancies between IQ and adaptive behavior scores were more likely to have another mental health diagnosis like anxiety or depression. While more research is needed to replicate this finding, it appears that adaptive behavior may also impact psychiatric outcomes and psychological well-being.

**Future Directions** It should be clear from the information presented that an increased focus on adaptive behavior skills for youth with ASD as they transition to adulthood is warranted. The research that exists on adaptive behavior profiles in this age group suggests that adaptive behavior, and not IQ, is most predictive of postschool outcomes. There are countless examples of young adults with ASD who are of average or above-average intelligence, but adaptive behavior deficits prevent them

ASD who are of average or above-average intelligence, but adaptive behavior deficits prevent them from living independently, keeping a job, or otherwise succeeding in their adult lives. Future research should put more focus on adaptive behavior for people with ASD in this age group. It would be useful to know more about typical adaptive behavior profiles (including common areas of relative strength or weakness, as current findings are somewhat conflicting) as well as their longitudinal

strength or weakness, as current findings are somewhat conflicting) as well as their longitudinal trajectory (i.e., how do adaptive skills change as youth with ASD age out of school and enter young adulthood?). In addition, these questions should be studied separately in people with ASD who have comorbid ID and those who do not, as prior research suggests that adaptive behavior profiles and outcomes may differ for these two groups.

Despite the importance of adaptive behavior, relatively little work has been done examining the factors that predict or influence adaptive skills (Kraper et al. 2017). A better understanding of the development of adaptive behavior skills is warranted, with the hope that this would lead to increased knowledge of how to improve adaptive skills in people with ASD. Increased focus should be placed on improving adaptive behavior skills, both in research and in clinical practice. Adaptive behavior

on improving adaptive behavior skills, both in research and in clinical practice. Adaptive behavior skills, in particular those that relate to adult outcomes, should be a target of intervention for all youth with ASD as they transition to adulthood. However, it is still unclear exactly which adaptive skills are most related to adult outcomes. Very little research has specifically investigated how adaptive behavior relates to postschool outcomes, and virtually none of the current research

how adaptive behavior relates to postschool outcomes, and virtually none of the current research investigating predictors of postschool success use standardized, comprehensive measures of adaptive behavior, as most comes from the same NLTS2 dataset. More research should be conducted to identify which adaptive skills are the most important, as well as develop effective interventions for improving these skills.

**Adaptive Behavior Scales**  **Definition** Adaptive behavior scales can provide information about children’s communication, socialization, and other everyday behavior relative to their age (Demchak and Drinkwater 1998; Gillham et al. 2000). Adaptive behavior scales are different from intelligence tests in that they measure what a child does in the real world versus what a child is capable of in a structured testing situation (Volkmar 2003). The most widely used adaptive behavior scale is the

a structured testing situation (Volkmar 2003). The most widely used adaptive behavior scale is the Vineland Adaptive Behavior Scales (Sparrow et al. 1984, 2005); which is a semi-structured interview with parents or caregivers to assess capacities for self-sufficiency in various areas, including communication, daily living, and social, as well as for young children, motor skills.

**Historical Background** Beginning with the first descriptions of mental retardation in the 1800s, limits to or an inability to adapt to the demands of everyday life, that is, adaptive behavior, was emphasized as a main descriptor of people considered to have mental retardation (Bothwick-Duffy 2007). Adaptive behavior scales were developed to identify behavior deficits needing treatment in people who were already known to have a disability. Eventually, assessment of adaptive behavior became

who were already known to have a disability. Eventually, assessment of adaptive behavior became used for the purposes of diagnosis and eligibility for special services (Bothwick-Duffy 2007). Although social factors are currently viewed as a central defining characteristic of the autistic syndrome, earlier research did not systematically evaluate social dysfunction in autistic individuals; therefore, the utility of a well-standardized, normative assessment instrument for documenting autistic

the utility of a well-standardized, normative assessment instrument for documenting autistic social dysfunction in terms of daily adaptive functioning became clear (Volkmar et al. 1987).

Literature describing adaptive deficits in autism emerged with Sparrow et al. (1984) and Volkmar et al. (1987) in the 1980s. The assessment of adaptive behavior in individuals with autism along with standardized measures of intellectual functioning was developed to determine whether or not to assign a diagnosis of mental retardation or intellectual disability as well as to distinguish between Autism Spectrum Disorders and other intellectual and developmental disabilities (Carter et al. 1998).

Spectrum Disorders and other intellectual and developmental disabilities (Carter et al. 1998). Multiple assessments were created to measure these adaptive skills. The Behavior Inventory for Rating Development (BIRD) was designed to assess types and levels of adaptive behaviors. The BIRD is classified into several subscales of adaptive behavior; Cognitive Development, Self-Help, Physical Development, Social Behavior, and Self-Control (Sparrow and Cicchetti 1984). Other measures of adaptive

Social Behavior, and Self-Control (Sparrow and Cicchetti 1984). Other measures of adaptive behavior include the Comprehensive Test of Adaptive Behavior (Adams 1984); Scales of Independent Behavior (Bruinicks et al. 1984); and the Adaptive Behavior Inventory (Brown and Leigh 1986). The more widely used measure, the Vineland Adaptive Behavior Scales-Survey Form evaluates children’s personal and social sufficiency in a semi-structured interview with a primary caregiver (Sparrow et al. 1984). This

sufficiency in a semi-structured interview with a primary caregiver (Sparrow et al. 1984). This instrument assesses four areas of adaptive behavior: Communication, Daily Living Skills, Socialization, and Motor Skills (Carter et al. 1998; Sparrow et al. 1984).

**Current Knowledge** Adaptive skills include whatever capacities an individual possesses to function within their everyday environment, encompassing self-sufficiency as well as social competence (Demchak and Drinkwater 1998; Paul et al. 2004). These skills are particularly important in individuals with autism and related conditions because they contribute the most to an individual’s ability to function successfully and independently in the world (Liss et al. 2001). Adaptive behavior, or

to function successfully and independently in the world (Liss et al. 2001). Adaptive behavior, or children’s ability to take care of themselves and get along with others, is an extremely important aspect of multi-dimensional assessment and interventions for preschool and school-aged children as well as for adolescents and adults. Adaptive behavior assessment is useful for diagnosing possible disabilities and developmental problems of preschoolers, which then can lead to planning effective home,

and developmental problems of preschoolers, which then can lead to planning effective home, family, and school programs (Harrison and Raineri 2007). Given that adaptive behavior is modifiable, it can lead to planning effective home, family, school, community, and vocational planning through the life span.

As noted, the most widely used measurement of adaptive behavior is the Vineland Adaptive Behavior Scales, which are broken down into four scales. The Communication scale refers to skills required for receptive, expressive, and written language; Daily Living Skills scale includes the practical skills needed to take care of oneself and contribute to a household and community; Socialization scale includes skills needed to get along with others, regulate emotions and behavior, as well as skills

includes skills needed to get along with others, regulate emotions and behavior, as well as skills involved in leisure activities such as play; and finally the Motor Skills scale, comprising both fine and gross motor items, which is typically assessed in individuals below the age of 6 years or when significant difficulty in motor development is suspected. Additionally, the Vineland also contains a Maladaptive Behavior Domain, which assesses the presence of problem-atic behaviors that interfere

a Maladaptive Behavior Domain, which assesses the presence of problem-atic behaviors that interfere with an individual’s functioning. The Maladaptive Behavior Domain can be administered to children aged 5 and older and includes both behaviors that are common in early development but are less common as children get older and more serious behaviors that are of concern throughout development (Carter et al. 1998; Sparrow et al. 1984).

Further explanation of these scales is as follows: the Communication scale includes expressive, which is what an individual says, while receptive is what an individual understands, and written is what an individual reads and writes. The Daily Living scale includes personal information such as how an individual eats, dresses, and practices personal hygiene, as well as domestic information such as what household tasks an individual performs, and finally community, such as how an individual uses

what household tasks an individual performs, and finally community, such as how an individual uses time, money, the telephone, and job skills. The Socialization scale includes interpersonal information such as how an individual interacts with others, as well as play and leisure, such as how an individual plays and uses leisure time, as well as coping, or how an individual shows responsibility and sensitivity to others (Paul et al. 2004).

Volkmar and colleagues evaluated the ability of the Vineland Adaptive Behavior Scales to diagnose autism by looking at multiple regression equations to predict expected socialization and communication skills on the basis of age, parent education, and sex of the child (Volkmar et al. 1993). While deficits in both communication and socialization are characteristic of the disorder, individuals with autism tend to evidence greater impairment in socialization relative to both communication and

with autism tend to evidence greater impairment in socialization relative to both communication and daily living skills (Carter et al. 1996). Children with autism display significantly poorer daily living skills and more serious maladaptive behaviors than those with other developmental disorders (Gillham et al. 2000).

Multiple studies have confirmed that the Vineland Adaptive Behavior Scales (Sparrow et al. 1984), is a well-standardized, semi-structured instrument for assessing adaptive behavior. Gillham et al. (2000) reported that autism could be differentiated from both PDD-NOS and non-autistic developmental disorder (DD) with the Socialization and Daily Living scales of the Vineland Adaptive Behavior Scales (Paul et al. 2004; Sparrow et al. 1984). Children with PDD-NOS, when compared with those with

(Paul et al. 2004; Sparrow et al. 1984). Children with PDD-NOS, when compared with those with autism, differ only in very specific areas, primarily the use of expressive language for communication – particularly syntax and pragmatics – and the areas of adaptive function on which these skills have a direct effect, such as phone use, manners in conversation, and using language to identify and initiate interaction with others (Paul et al. 2004).

Studies have compared the Vineland Adaptive Behavior Scales with other Adaptive Behavior measures and found significant between score correlations (Villa et al. 2010). An international study that compared the Scales of Independent Behavior (SIB) and the revised Vineland Adaptive Behavior Scales revealed one similar significant factor, demonstrating personal independence for both tests. The summary scores of both tests were found to correlate moderately with IQ as well as with the extent of

scores of both tests were found to correlate moderately with IQ as well as with the extent of integration children achieved in their subsequent school placement (Roberts et al. 1993). There are state and local differences in the adoption of specific criteria for deficits in adaptive behavior. However, the development of instruments that provide national norms such as the Comprehensive Test of Adaptive Behavior (Adams 1984) and Vineland Adaptive Behavior Scales (Sparrow et al. 1984) have enabled

Behavior (Adams 1984) and Vineland Adaptive Behavior Scales (Sparrow et al. 1984) have enabled more normalized and quantifiable guidelines that could be widely used (Carter et al. 1998).

Adaptive behavior scales have multiple implications for clinical practice, including assessment, diagnosis, and treatment planning. In contrast to intellectual functioning, adaptive behavior is modifiable (Carter et al. 1998). For all individuals, however, cognitive functioning will set some constraints on the level of adaptive functioning that can be achieved. The adaptive behavior scales are a crucial component of a developmental and diagnostic assessment for children with autism and

are a crucial component of a developmental and diagnostic assessment for children with autism and potential comorbid intellectual disability. Additionally, determining strengths and weaknesses in everyday skills has important implications for intervention planning and family support (Perry et al. 2009) and can inform recommendations for educational and psychotherapeutic interventions for high- and low-functioning individuals (Carter et al. 1996). Adaptive behavior scales have been applied to

and low-functioning individuals (Carter et al. 1996). Adaptive behavior scales have been applied to instructional program planning for disabled preschool and school-aged children, adolescents, and adults (Demchak and Drinkwater 1998). Additionally, the assessment of adaptive behavior can be used as an outcome measure to document the efficacy of intervention programs (Carter et al. 1998).

**Future Directions** While considerable gains have been made in the development of adaptive behavior scales, continued research into their generalizability and cultural sensitivity is imperative, as with all measures. The impact of adaptive behavior scales is widely felt, as they are integral to the diagnosis of intellectual disability and have become a key component of assessment and intervention planning for individuals with autism spectrum disorders. Therefore, it is critical that

planning for individuals with autism spectrum disorders. Therefore, it is critical that individuals designing intervention programs set attainable goals across domains of adaptive functioning to lead to increased self-efficacy for all involved (Carter et al. 1998). Further research could explore the connections between outcomes of adaptive behavior scales and successful intervention, providing further guidance for practitioners who design these intervention goals. The importance of intensive

further guidance for practitioners who design these intervention goals. The importance of intensive intervention in the area of adaptive behavior, particularly for children with autism spectrum disorders, remains clear and continued research into successful interventions is necessary.

**ADHD Rating Scale**  **Description** The ADHD rating scale is an 18-question informant report that screens for symptoms of ADHD in children and teenagers from 5 to 17 years of age (DuPaul et al. 1998, 2016a). This questionnaire has four forms that are separated by setting and age group. There is one form for caregivers (parents and legal guardians) to complete for children (ages 5–10) and another for adolescents (ages 11–17), and there are parallel age forms for teachers. Each question on

for adolescents (ages 11–17), and there are parallel age forms for teachers. Each question on the ADHD rating scale asks about the presence and frequency of ADHD symptoms. Nine items ask about behaviors related to inattention (“easily distracted”), and nine questions about hyperactive and impulsive behaviors (“interrupts others”). Frequency is rated on a four-point scale from “never” to “sometimes” to “often” to “very often.” The ADHD rating scale, fifth edition, incorporates questions about

to “often” to “very often.” The ADHD rating scale, fifth edition, incorporates questions about how these symptoms cause problems at home or school in six areas: (1) getting along with family members/school professionals, (2) getting along with other children, (3) completing or returning homework, (4) performing academically in school, (5) controlling behavior in school, and (6) feeling good about himself/herself. The ADHD rating scale provides symptom counts and percentile scores relative to a

himself/herself. The ADHD rating scale provides symptom counts and percentile scores relative to a community sample of parents and teachers that were recruited from all regions of the United States.

**Historical Background** The ADHD rating scale has been used as an evaluation tool for ADHD for almost 20 years. The ADHD rating scale fourth edition was created with an explicit goal of matching parent and teacher reports of ADHD symptoms to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV; American Psychiatric Association 1994) and the text revised version (DSM-IV-TR; American Psychiatric Association 2000). While the DSM-IV and DSM-IV-TR prohibited a

(DSM-IV-TR; American Psychiatric Association 2000). While the DSM-IV and DSM-IV-TR prohibited a co-occurring diagnosis of ADHD when a diagnosis of autism spectrum disorder (ASD) was made, scientific papers studied the treatment of ADHD symptoms in ASD (Aman et al. 2008; Handen et al. 2000; Posey et al. 2007; Research Units of Pediatric Psychopharmacology 2005), as well as the influence of ADHD symptoms on the clinical presentation of ASD (Corbett and Constantine 2006; Corbett et al. 2009; Gadow

on the clinical presentation of ASD (Corbett and Constantine 2006; Corbett et al. 2009; Gadow et al. 2006; Yerys et al. 2009, 2011) using the ADHD rating scale and other comparable measures. The ADHD rating scale fifth edition (DuPaul et al. 2016a) integrated additional questions about impairment due to increased recognition that both symptom and symptom-related impairments are critical for making a diagnosis (Power et al. 2015).

**Psychometric Data** The ADHD rating scale – fifth edition – has excellent reliability and validity metrics (DuPaul et al. 2016a,b). The normative data for the ADHD rating scale fifth edition was collected on 2079 children from 2079 parents and guardians and 2140 students from 1070 teachers (samples did not overlap). Parent and guardian incomes ranged from <$5000 to $175,000 or more per year; 64.1% had White non-Hispanic backgrounds, lived in both metropolitan (86.4%) and non-metropolitan

64.1% had White non-Hispanic backgrounds, lived in both metropolitan (86.4%) and non-metropolitan areas (13.6%). Teachers included general (83.3%) and special education (16.4%) teachers who were predominantly White non-Hispanic (87.3%) and reported a mean of 17.88 years of teaching experience (DuPaul et al. 2016b). The rating scale was shown to have excellent reliability for the inattention and hyperactivity/impulsivity domains across age (alphas >0.89), child’s and rater’s gender (alphas

and hyperactivity/impulsivity domains across age (alphas >0.89), child’s and rater’s gender (alphas >0.90), ethnicity (alphas >0.90), and assessment language (English vs. Spanish; alphas >0.88). There was acceptable test-retest reliability over a 6-week period for parent ratings on child and adolescent forms for inattention (r ¼ 0.80 and 0.70, respectively) and hyperactivity/impulsivity (r ¼ 0.83 and 0.61, respectively). Test-retest reliability was also acceptable over a 6-week period for

0.83 and 0.61, respectively). Test-retest reliability was also acceptable over a 6-week period for teacher ratings on child and adolescent forms for inattention (r ¼ 0.91 and 0.85, respectively) and hyperactivity/impulsivity (r ¼ 0.90 and 0.77, respectively). The impairment ratings introduced in the fifth edition showed better test-retest reliability for both raters in the child form (correlations range from 0.62 to 0.85) than in adolescents (correlations range from 0.06 to 0.81). Criterion

range from 0.62 to 0.85) than in adolescents (correlations range from 0.06 to 0.81). Criterion validity was also assessed in comparison to the Connors rating scales (Conners 2008), and validity coefficients were acceptable (correlations ranged from 0.81 to 0.89). The ADHD rating scale – fifth edition – also showed excellent factorial validity with the 2-factor structure (inattention and hyperactivity/impulsivity) being the optimum structure. All critical goodness-of-fit statistics were met

being the optimum structure. All critical goodness-of-fit statistics were met (comparative fit index and Tucker-Lewis index >0.91 and root mean square error of approximation <0.08). Across both rater groups, the factors were shown to be generally invariant to rater gender, rater age, child gender, and child age, though it should be noted that there was some slight strain on the factor structure within African American male students as well as teacher ratings by age. The delta comparative fit

within African American male students as well as teacher ratings by age. The delta comparative fit index showed a change equal to or less than 0.002, which suggests this strain is statistically but not clinically significant. This normative study explicitly excluded children with known neurodevelopmental disorders and cognitive impairments, including autism spectrum disorder (ASD); thus, this sample is highly unlikely to represent the psychometric properties in children and adolescents with

sample is highly unlikely to represent the psychometric properties in children and adolescents with ASD.

To date, one study evaluated the psychometric properties of the ADHD rating scale fourth edition in children and adolescents with ASD (Yerys et al. 2017). This study demonstrated strong convergent validity in parent and guardian ratings with an informant report of executive function that includes scales on inhibition (i.e., hyperactivity/impulsivity behaviors) and working memory (inattention, forgetfulness, distractibility behaviors) and showed known age-related changes in symptom severity.

forgetfulness, distractibility behaviors) and showed known age-related changes in symptom severity. However, the ADHD rating scale fourth edition demonstrated weak factorial validity for both rater types, suggesting that several items on the ADHD rating scale may require revision in order to better separate ADHD symptoms in children and adolescents with ASD. A major limitation of this study is that it was conducted with a sample of convenience – families willing to travel to a research center

it was conducted with a sample of convenience – families willing to travel to a research center to participate in studies – rather than a community-based sample that matches the demographics of the ASD population in the United States.

**Clinical Uses** The ADHD rating scale fifth edition can be used to screen for an ADHD diagnosis. Mental and behavioral health specialists with adequate training in psychological and psychiatric assessment can interpret scores generated from the ADHD rating scale. When used in isolation, the ADHD rating scale fifth edition can be used to identify children at risk for an ADHD diagnosis, but a valid diagnosis of ADHD requires follow-up with either an unstructured or structured developmental and

diagnosis of ADHD requires follow-up with either an unstructured or structured developmental and psychiatric interview with caregivers to confirm that the symptoms are not better explained by other diagnoses and are truly impairing the individual’s functioning in two settings. Some clinicians may also choose to include continuous performance-based measures, like the Conners’ Continuous Performance Test. However, it is important to note that concerns have been raised about the ecological

Test. However, it is important to note that concerns have been raised about the ecological validity of continuous performance tests and that research has shown minor incremental utility of these tests when combined with psychiatric interviews and checklists. While the debate regarding the utility of continuous performance tests continues (Berger et al. 2017), clinicians continue to rely upon the robust psychometrics of measures like the ADHD rating scale.

**Admission, Review, and Dismissal Committee (ARD Committee)**  **Definition** The Individuals with Disabilities Education Act (IDEA) is a federal law that mandates the availability of a free appropriate public education (FAPE) for all eligible children with disabilities. IDEA defines “disability” as a person “(1) with mental retardation, hearing impairments . . . speech or language impairments, visual impairments . . . serious emotional disturbance . . . orthopedic impairments, autism,

visual impairments . . . serious emotional disturbance . . . orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities . . . (2) who needs special education and related services because of his or her disability or disabilities” (IDEA § 802, emphasis supplied). Thus, children with ASD are eligible for IDEA-related services.

IDEA Part B, Assistance for Education of All Children with Disabilities, mandates educational services for children from ages three 3 to 21. The educational requirements of Part B include an Individualized Education Program (IEP) for each child and demand the placement of each child in the least restrictive environment (LRE) possible. An “appropriate” education must address a child’s specific educational needs. Determining what is appropriate entails several steps. The responsible state actor

needs. Determining what is appropriate entails several steps. The responsible state actor must conduct an individualized assessment to ascertain a student’s strengths and weaknesses. Next, an IEP Team, comprising representative of the school district, a teacher, the child’s parents, and if appropriate, the child, must identify appropriate goals and objectives for the student and construct an IEP designed to aid the student in meeting the goals and objectives. Finally, the IEP Team is charged

designed to aid the student in meeting the goals and objectives. Finally, the IEP Team is charged with identifying the aids and services necessary for the child to succeed in the IEP.

States have discretion regarding the title assigned to the IEP Team. The Texas regulatory framework denotes an IEP Team “The Admission, Review, and Dismissal Committee.” Like any IEP Team, and ARD is charged with determining eligibility for special services (“admission”), conducting periodic reviews of IEPs (“review”), and determining the appropriateness of any disciplinary actions (“dismissal”).

IDEA prohibits students from being punished for actions caused by their disabilities. The IEP Team/ARD must review any proposed disciplinary actions to determine whether the targeted behavior was a manifestation of the student’s disability. If the IEP Team/ARD determines that the behavior was not a manifestation of the disability, the school may impose the sanctions that it would impose for the same behavior committed by a student without disability. Those sanctions may include suspension or

same behavior committed by a student without disability. Those sanctions may include suspension or expulsion. Because IDEA mandates a free, appropriate, public education, educational services must be offered during the suspension or expulsion.

**Adolescents with Autism Spectrum Disorder (ASD) Spontaneously Attending to Real-World Scenes: Use of a Change Blindness Paradigm**

**Definition** Change blindness is a perceptual phenomenon that occurs when a change in a visual stimulus is introduced and the observer does not notice it (Rensink 2002). A classically used paradigm presents flickering stimuli made of repeated sequences of a picture followed by a “masking” stimulus (e.g., blank screen), which is followed by the initial picture with a change. Our sensory system is able to automatically detect change between pictures when they are immediately contiguous, but

is able to automatically detect change between pictures when they are immediately contiguous, but detection becomes more effortful when they are separated by a mask for an interval exceeding the temporal limits of visible persistence (Shore et al. 2006). Intervals of more than 100 ms render detection challenging, even when changes are large. Due to the mask, which hinders automatic visual change detection processes, orientation of visual attention is guided by controlled mechanisms that reveal

detection processes, orientation of visual attention is guided by controlled mechanisms that reveal the way we prioritize information that enters working memory (Rensink 2002). Indeed, in such circumstances, we need to attend selectively to the most important items in our environment. The detection of change depends on the degree of interest for the object that changes. Detection of change is more likely for parts of the scene that are of central interest rather than of marginal interest. Thus,

likely for parts of the scene that are of central interest rather than of marginal interest. Thus, change blindness is an indicator of where and to which items and features attention is preferentially directed in the presentation of a visual stimulus. Change blindness is assessed by measuring the time taken before noticing the change and the errors in identifying the change and has been extensively used to investigate change detection in natural visual scenes relevant to real-world experience

used to investigate change detection in natural visual scenes relevant to real-world experience (Rensink 2002).

Though not a diagnostic feature, attentional atypicalities are often found among individuals with autism spectrum disorder (ASD). The literature is mixed, presenting in some instances superior abilities while in other performances are lower. Studies have shown that individuals with ASD are quicker or more successful than typically developing (TD) control participants at various visual-attentional tasks (for a review, see Kaldy et al. 2016), the overall consensus being that across development

tasks (for a review, see Kaldy et al. 2016), the overall consensus being that across development and symptom severity individuals with ASD outperform controls on visual search. Change blindness relies on processes that are closely related to those involved in visual search tasks. It is therefore highly relevant for investigating visual attention in ASD. Change blindness paradigms have been used to explore visual-attentional abilities in ASD with mixed results. In a number of studies, people

to explore visual-attentional abilities in ASD with mixed results. In a number of studies, people with autism showed an enhanced effect of blindness to change, while it was attenuated in others (Ames and Fletcher-Watson 2010). These contradictory findings may stem from the interference of impairments in processing speed when performing tasks that otherwise reveal superior visualization skills in ASD (Hochhauser et al. 2018). In addition, developmental transformations may possibly modulate the

ASD (Hochhauser et al. 2018). In addition, developmental transformations may possibly modulate the balance between executive and perceptive abilities, with recent research suggesting that processing speed impairments affect performances in change blindness even in adolescents (Hochhauser et al. 2018).

**Adrenoleukodystrophy**  **Definition** This rare genetic condition is one of a group of disorders termed the leukodystrophies in which myelin (the sheath surrounding nerve cell axons) is damaged. The condition is associated as well with severe damage both to the brain and peripheral nervous system as well as to the adrenal glands. Associated problems can include seizures, movement problems, and loss of function in many areas. Although onset in infancy and adulthood is possible, the onset is

loss of function in many areas. Although onset in infancy and adulthood is possible, the onset is usually during childhood, and there may be some confusion early on with other conditions like childhood disintegrative disorder. An adolescent onset type is observed, frequently in males, with more prominent involvement of the spinal cord.

The onset of the condition can be characterized by visual or auditory problems, motor and motor coordination issues, seizures, and increased behavioral difficulties. Characteristic laboratory findings and MRI findings are observed. A genetic test is available. The prognosis is poor with death after a period of some years of illness. Some dietary interventions are available, and new therapeutic approaches are being investigated.

**Adult Follow-Up Studies**  **Definition** Predicting outcome and planning for adult service needs for children with Autism Spectrum Disorders (ASDs) is limited by gaps in current knowledge. The best quality information about autism in adulthood comes from a few population-based longitudinal studies that estimate the full picture of outcomes. However, changes in diagnostic criteria in the 1990s from a comparatively narrow definition to the broader current criteria for ASD means that studies

from a comparatively narrow definition to the broader current criteria for ASD means that studies of adults originally diagnosed as children with historical criteria have limited application to later generations. In addition, longitudinal research that depends on information from aging caregivers has inherent challenges. For example, recall of symptoms from earlier life may be compromised by memory problems and health problems of the aging informant. An alternative research design using

by memory problems and health problems of the aging informant. An alternative research design using cross-sectional samples of adults diagnosed with current, broader criteria can provide data relevant to the future of children being diagnosed today. Such cross-sectional studies are useful adjuncts to population-based, longitudinal research, as they give a more comprehensive understanding of ASD in adulthood and can bring focus to specific issues. For example, the prevalence and variety of

ASD in adulthood and can bring focus to specific issues. For example, the prevalence and variety of behaviors that lead to encounters with law enforcement have been described by Allen et al. (2008).

Two useful prognostic factors for adult outcome in ASD are childhood intellectual ability and onset of communicative speech. Like other people with intellectual disabilities (ID), people with ASD and ID generally achieve a limited range of independence and “success” in adult life as defined in developed Western societies inclusive of gainful employment, a household independent of their parents, and a circle of reciprocal friendships and romantic relationships. Those with average-range

and a circle of reciprocal friendships and romantic relationships. Those with average-range intellectual abilities (i.e., 70) have widely varying adult outcomes. Several longitudinal studies have demonstrated that communicative phrase speech before age 6 and an average-range childhood intelligence quotient (IQ) are necessary for a chance at adult independence but in no way guarantee it (Billstedt et al. 2005; Farley et al. 2009; Howlin et al. 2004; Kobayashi et al. 1992). When assessed in

et al. 2005; Farley et al. 2009; Howlin et al. 2004; Kobayashi et al. 1992). When assessed in adulthood, barriers to independence in people with ASD and average-range intellectual abilities appear to include co-occurring psychiatric conditions, difficulty with initiation of goal-oriented activities, and poor social skills. There may also be specific genetic variations, developmental processes, educational opportunities, ecological factors, and specialized adult supports that influence levels of

opportunities, ecological factors, and specialized adult supports that influence levels of independence in adulthood.

**Current Knowledge** **Natural Course** While ASD is a lifetime diagnosis, several longitudinal studies have shown improvements in autistic symptoms over the life span (Billstedt et al. 2005; Cederlund et al. 2008; Piven et al. 1996; Rumsey et al. 1985; Seltzer et al. 2003). The trend is toward improvement in symptom severity in participants as a group, with the greatest amount of behavioral improvement in individuals who had the highest IQs and the least severe symptom presentation at the

improvement in individuals who had the highest IQs and the least severe symptom presentation at the initial evaluation. These studies also show that a small proportion of affected individuals no longer meet full diagnostic criteria in adulthood. Importantly, most of these individuals retain subtle impairments that continue to present daily challenges to fully independent functioning.

There also appears to be a small subgroup that experiences significant deterioration in cognitive or behavioral functioning in adolescence (Ballaban-Gil et al. 1996; Eaves and Ho 2008; Kobayashi et al. 1992; Venter et al. 1992). Causes for this deterioration are unknown as yet, but appear unrelated to adolescent seizure-onset that occurs in some individuals with ASD.

**Mortality** Studies of mortality in autism have identified a higher rate of mortality for populations with ASD than in the general population, owing largely to complications related to epilepsy and other medical conditions and to accidental deaths that may be associated with ID. Standardized mortality ratios (i.e., the ratio of observed deaths in a specific sample to expected mortality in the general population matched on variables such as age, gender, and length of follow-up period) range

general population matched on variables such as age, gender, and length of follow-up period) range from 1.9 to 2.4, approximately twice the expected rate for the general population (Isager et al. 1999; Pickett et al. 2006; Shavelle et al. 2001). Females have had higher mortality rates than males in studied populations, probably associated with a higher rate of ID.

**Selected Longitudinal Outcome Studies** A number of authors have categorized outcomes of adults with AD using broad social and educational or occupational criteria (Howlin et al. 2004). Outcome classifications usually include five nodes and range from Very Poor (i.e., the person cannot function independently in any way) to Very Good (i.e., achieving great independence, having friends and a job). Findings from outcome studies are quite disparate, in spite of considerable similarities between

Findings from outcome studies are quite disparate, in spite of considerable similarities between outcome criteria and samples.

A consistent finding from published outcome studies is that outcome for a majority (approximately 60%) of individuals with ASD was Fair, Poor, or Very Poor (Billstedt et al. 2005; Eaves and Ho 2008; Farley et al. 2009; Howlin et al. 2004).

Gillberg and Steffenburg (1987) studied outcome for a population-based sample of 23 people with ASD. As children, one-third obtained IQ scores in the mildly mentally retarded range and 26% achieved scores in the normal or near normal ranges. Eight (35%) had communicative speech at age 6. These 23 participants were aged 16–23 years at the time of the follow-up. One person (4% of the sample) obtained a “Good” outcome. Thirty-five percent experienced the “Fair, but restricted outcome.” (i.e.,

a “Good” outcome. Thirty-five percent experienced the “Fair, but restricted outcome.” (i.e., characteristics of “poor” outcome status, but accepted by and included in some social community). Thirteen percent had a “Fair” outcome, and 44% had “Poor” or “Very Poor” outcomes. Childhood IQ and use of communicative speech at age 6 were useful predictors of outcome status. Epileptic seizures were present in one-third of the population, often associated with severe mental retardation and pubertal

in one-third of the population, often associated with severe mental retardation and pubertal symptom aggravation.

Kobayashi et al. (1992) conducted a follow-up investigation of 201 adults identified with ASD in childhood through clinical services in Japan. Four of the people had died. The mean age for the remaining 197 young adults was 21 years, 8 months (S ¼ 3.6). About one-fourth of the sample had an IQ score of 70 or better at age 6, and about 20% were able to speak without echolalia at that age. An additional 31% used communicative language at age 6 but also used echolalic speech. Forty percent of the

31% used communicative language at age 6 but also used echolalic speech. Forty percent of the sample began school in a general education class, but only 27% remained in general education at the age of 12. At follow-up, 43 (21%) were employed and 11 (6%) were enrolled in higher education or vocational training programs. Outcome adjustment for 47% was “Good” or “Very Good,” was “Fair” for 32%, and was “Poor” or “Very Poor” for 46%. Childhood IQ was the only strong predictor of outcome in this

was “Poor” or “Very Poor” for 46%. Childhood IQ was the only strong predictor of outcome in this investigation. Although there were similarities between the sample in this study and others reported, the outcome for these participants was strikingly better, overall. The authors provided some possible explanations including the socio-demographic factors in Japan, advances in public education standards for people with disabilities, intensive intervention histories, and a high proportion of people

for people with disabilities, intensive intervention histories, and a high proportion of people with ASD and average-range IQ scores at baseline.

Howlin et al. (2004) studied adult outcome for 68 people with ASD who also had a childhood nonverbal IQ score of 50 or better. The mean age at the initial evaluation was 7.24 (SD ¼ 3.10) and at follow-up was 29.33 (SD ¼ 7.97). Nonverbal IQ scores averaged 80.21 (SD ¼ 19.28). At follow-up, the average nonverbal IQ was 75 (SD ¼ 21.52). Almost all of the subjects were known to have attended compulsory schooling; however, only 22% left school having achieved formal qualifications. At the time of

schooling; however, only 22% left school having achieved formal qualifications. At the time of the follow-up investigation, 23 people were employed. Eight worked in regular, independent jobs; 1 was self-employed as an artist but was unable to earn a living wage; and 14 worked in sheltered or supported employment. Twenty-seven people were occupied in general work/leisure programs at day centers for adults with disabilities. Outcome adjustment ratings for the sample were that 22% had “Good” or

for adults with disabilities. Outcome adjustment ratings for the sample were that 22% had “Good” or “Very Good” outcomes, 19% had “Fair” outcomes, and 58% had “Poor” or “Very Poor” outcomes. Analyses of the assessment results revealed that childhood IQ was a useful predictor of adult adjustment in that those with childhood nonverbal IQ scores of 70 or more were more likely to do well than those with scores below 70. Furthermore, a score of 100 or better did not increase the likelihood that a

with scores below 70. Furthermore, a score of 100 or better did not increase the likelihood that a person would do well in adulthood. For those who were capable of completing a childhood verbal IQ measure, the combination of verbal and nonverbal IQ scores in childhood provided a more precise indication of outcome classification, with scores above 70 in both domains yielding the greatest likelihood of a “Fair” outcome or better. Specifically, among those with childhood nonverbal IQ scores of 70

of a “Fair” outcome or better. Specifically, among those with childhood nonverbal IQ scores of 70 or more, 7 had a “Very Good” outcome, 7 had a “Good” outcome, 10 obtained a “Fair” outcome, and 20 had “poor” or “Very Poor” outcomes. Language level at age 5 was useful in predicting overall outcome and residential status but none of the other outcome variables studied demonstrated predictive utility.

Eaves and Ho (2008) followed 48 individuals with ASDs from childhood (mean age ¼ 6.8) to adulthood (mean age ¼ 24) in Canada. Fifty-seven percent of this sample had Autistic Disorder, while the remainder had less severe variants of ASD. Eight of the participants had a childhood IQ score above 70. All participants received special education support during their compulsory schooling years, and 30% engaged in some kind of postsecondary educational program. Overall outcome adjustment ratings were

engaged in some kind of postsecondary educational program. Overall outcome adjustment ratings were that 21% had “Good” or “Very Good” outcomes, 32% had “fair” outcomes, and 46% had “poor” outcomes. No participants fell within the “Very Poor” outcome categorization. Sixty percent of the sample resided at home with their parents, 19% lived in group homes, and 13% lived in foster care. Almost 80% received a government disability pension and used the services of social workers. In this sample,

received a government disability pension and used the services of social workers. In this sample, childhood verbal IQ was most predictive of outcome status. However, the proportion of individuals who were capable of completing an assessment of verbal IQ was not reported.

Also in Cederlund et al. 2008, Cederlund et al. released their study of outcome for 70 adults with autism and 70 adults with Asperger Disorder, after 5 or more years elapsed from original diagnosis. This research team used the same outcome categorization scheme as Gillberg and Steffenburg (1987), with categories of “Good,” “Fair,” “Restricted,” “Poor,” and “Very Poor.” Twenty-seven percent (n ¼ 19) of this sample obtained an outcome categorization of “Good,” and 47% (n ¼ 33) were categorized

19) of this sample obtained an outcome categorization of “Good,” and 47% (n ¼ 33) were categorized as having a “Fair” outcome. Sixteen people, or 23%, obtained “Restricted” outcome status, and two people, or 3%, fell within the “Poor” category. There were no participants with “Very poor” outcome ratings.

Farley et al. (2009) studied 41 adults who had been identified through a population-based study of ASD in Utah in the 1980s. All of these individuals had previous IQ scores of 70 or greater. Mean age at the first assessment was 7.2 years (SD ¼ 4.1) and in adulthood was 32.5 years (SD ¼ 5.7). Outcome adjustment was somewhat better for this sample than previous samples, with 48% in the “Very Good” and “Good” categories, 34% in the “Fair” category, and 17% in the “Poor” category. No participants

and “Good” categories, 34% in the “Fair” category, and 17% in the “Poor” category. No participants fit within the “Very Poor” category of outcome categorization. Six participants did not meet diagnostic criteria for current ASD using gold standard diagnostic procedures, but five of these still retained significant social difficulties reported by themselves or significant others. Half were employed on a full- or part-time basis, and 39% had attended some kind of formal postsecondary education.

on a full- or part-time basis, and 39% had attended some kind of formal postsecondary education. Over half of the sample (56%) continued to live with their parents, and almost 25% lived in supported living arrangements including a state residential center for people with significant disabilities. Almost 60% of the sample reported co-occurring psychiatric diagnoses. Reported chronic medical conditions were those commonly seen in the general population (e.g., seasonal allergies, gout, high blood

were those commonly seen in the general population (e.g., seasonal allergies, gout, high blood pressure).

**Cognitive Function** Evidence to date reflects uneven development of cognitive abilities across people with ASD. Initial evaluations during childhood often indicate better nonverbal than verbal abilities. However, many studies show evidence increases in verbal ability and decreases in nonverbal ability during adolescence and adulthood. Group results for individuals with ASD and average-range IQ scores demonstrate consistency in the distribution of subtest scores on Wechsler scales. However,

scores demonstrate consistency in the distribution of subtest scores on Wechsler scales. However, some individuals who have relatively high IQs in childhood demonstrate significant increases in overall ability at follow-up (Gonzales et al. 1993). Disparities among findings may have several causes. Selection of tests at initial evaluation and follow-up for their appropriateness to the research question and participants’ behavior may influence results. Furthermore, tests may not be sufficiently

and participants’ behavior may influence results. Furthermore, tests may not be sufficiently parallel for comparison, so that some of the variance is attributable to inequality across measures. Variation of tests from the initial evaluation to follow-up further obscures results since within-group variation on measures may be considerable (Howlin et al. 2004). Age at initial IQ also appears to be an important factor, with nonverbal abilities varying more among children initially tested before

an important factor, with nonverbal abilities varying more among children initially tested before age 5 (Howlin et al. 2004).

**Associated Co-Occurring Conditions** Many of the outcome studies concerning adults with AD provide information concerning co-occurring medical and psychiatric conditions. Few have analyzed the specific contributions these disorders make to restrictions in overall outcome (Danielsson et al. 2005). One of the clearest indicators of the presence of significant co-occurring psychiatric and medical diagnoses is the proportion of individuals who are prescribed anticonvulsant and psychotropic

diagnoses is the proportion of individuals who are prescribed anticonvulsant and psychotropic medications. Eaves and Ho (2008) reported that 40% of their sample was prescribed medication for behavioral difficulties. Similarly, 40% of the participants in the population-based study by Billstedt et al. (2005) were prescribed medication for psychiatric disorders, and 40% of the adolescents and adults in another study were prescribed psychotropic medications to control behavior (Ballaban-Gil et al.

in another study were prescribed psychotropic medications to control behavior (Ballaban-Gil et al. 1996). Thirty-seven percent of those studied by Farley et al. (2009) were described as taking prescription medications aimed at managing behavioral difficulties.

Epilepsy is a chronic condition involving recurring seizures and is more common in individuals with ASD than in the general population, with an average prevalence rate of 16.8% across epidemiological studies of ASD (Fombonne 1999). This disorder occurs more frequently in individuals with ASD and ID. The onset of seizures typically occurs early in childhood (i.e., before age 2) or in adolescence (Danielsson et al. 2005; Kobayashi et al. 1992). Seizures remit in a fraction of those afflicted

(Danielsson et al. 2005; Kobayashi et al. 1992). Seizures remit in a fraction of those afflicted (Danielsson et al. 2005). Kobayashi et al. (1992) reported that 19% of their sample, representing the full range of functioning within ASD, had epilepsy, and all took antiepileptic medication. Nine percent of a sample of adults with ASD and average-range IQ scores took antiepileptics (Howlin et al. 2004).

Affective disorders challenge a person’s capacity to regulate mood and include depression, mania, and bipolar disorder. It is estimated that over 60% of people with AD suffer from a co-occurring affective disorder. In a study of 35 individuals with Asperger syndrome, Ghaziuddin et al. (1998) found that affective disorders were the most common type of psychiatric condition co-occurring in adults, affecting over half of their sample. Figures from outcome studies with adult samples range from 1%

affecting over half of their sample. Figures from outcome studies with adult samples range from 1% to 30% (Billstedt et al. 2005; Farley et al. 2009).

Results of several outcome studies demonstrate that anxiety disorders are present in a large proportion of adults with AD. Rumsey et al. (1985) determined that 50% of their sample was suffering from chronic, generalized anxiety, which they suggested could account for the attention difficulties observed in one-fifth of the sample. Another study of adults with ASD and average-range IQ scores concluded that 40% of their sample had OCD or chronic anxiety (Szatmari et al. 1989). Figures from other

that 40% of their sample had OCD or chronic anxiety (Szatmari et al. 1989). Figures from other outcome studies are much smaller; however, these results may be confounded by the presence of ritualistic characteristics and hyperactivity commonly associated with ASD (Ghaziuddin et al. 1998).

Hyperactivity and short attention span are common in people with ASD. These have been most commonly noted in children, yet some adults present with behavioral characteristics of Attention Deficit-Hyperactivity Disorder (ADHD) as well (Ghaziuddin et al. 1998). Forty (33%) of the adults in the study by Billstedt et al. (2005) presented with hyperactivity.

Psychiatric conditions evident in a small number of people with ASD include tic disorders, psychotic features, and catatonia. Almost 20% of the sample examined by Billstedt et al. (2005) demonstrated tics and 10% of the adults studied by Eaves and Ho (2008) had Tourette’s disorder. One of the 15 adults in another investigation presented with Tourette’s disorder (Ghaziuddin et al. 1998). A small number of individuals with ASD genuinely have co-occurring psychotic conditions. Eight percent of

number of individuals with ASD genuinely have co-occurring psychotic conditions. Eight percent of the sample in the study of adults with ASD conducted by Billstedt et al. (2005) and 38% of those examined by Szatmari et al. (1989) had characteristics of psychosis. Catatonia is another type of psychiatric disturbance that is rarely observed, but notable in ASD. One of the 15 adults studied by Patricia Howlin et al. (2000) had a sudden-onset catatonic episode during puberty. Billstedt et al.

Patricia Howlin et al. (2000) had a sudden-onset catatonic episode during puberty. Billstedt et al. (2005) reported a much higher percentage (12%) in their sample of 120 adults.

While not psychiatric disorders in their own right, maladaptive behaviors are significant deviations from expected behavior for a person’s developmental level. They are often disruptive and sometimes dangerous. Maladaptive behaviors are frequently observed in people with ASD of all levels of ability and developmental age. In general terms, maladaptive behaviors have been reported in up to 69% of adults with ASD with no overall difference in frequency between males and females (Ballaban-Gil et

adults with ASD with no overall difference in frequency between males and females (Ballaban-Gil et al. 1996; Eaves and Ho 2008). Maladaptive behaviors may be relatively infrequent in adults with ASD and average-range IQ scores, but odd or severe enough to preclude acceptance into general social settings over time (Rumsey et al. 1985). Self-injurious behaviors were reported to have occurred in 50% of the sample studied by Billstedt et al. (2005), and have been reported to be more common in

50% of the sample studied by Billstedt et al. (2005), and have been reported to be more common in females than in males (Ballaban-Gil et al. 1996). Difficulties with toileting and feeding appear to persist in lower functioning individuals, but difficulties with compulsive rituals may develop around these tasks in higher functioning adults as well. Aggression among adults is rarely designed to harm others, but property damage or harm to self may occur intermittently, sometimes in response to

harm others, but property damage or harm to self may occur intermittently, sometimes in response to unimportant changes or problems in the environment (Rumsey et al. 1985).

**Social Relationships** Few adults with ASD develop significant relationships outside of the family of origin in spite of common increases in interest in developing social relationships as individuals with AD age (Rumsey et al. 1985). Almost 75% of family members interviewed in the study by Eaves and Ho (2008) reported that they enjoyed good to excellent relationships with their affected relative; however, only one-third of the sample of affected adults had one or more friendships outside of

however, only one-third of the sample of affected adults had one or more friendships outside of the family. Similar results have been found in other studies of adults with ASD (Howlin 2003; Howlin et al. 2004).

Females have reportedly experienced greater success with peer relationships than males (Piven et al. 1996). Ten percent of adults in the study by Eaves and Ho (2008) had a romantic relationship at some time in the past, but none of the participants was romantically involved at the time of the investigation. Nineteen percent of the men with Asperger Disorder in the Cederlund et al. (2008) study and 3% of the men with Autistic Disorder were or had been in long-term romantic relationships.

and 3% of the men with Autistic Disorder were or had been in long-term romantic relationships. Thirty-two percent of those studied by Farley et al. (2009) had dated, and 20% were involved in a serious relationship at the time of the study. In general, very few adults with ASD have been reported to have successful, long-term romantic relationships (Howlin 2003; Howlin et al. 2004).

**Education and Employment** Approximately, 15% of adults with ASD studied in outcome research attend postsecondary education programs (Ballaban-Gil et al. 1996; Farley et al. 2009; Kobayashi et al. 1992; Rumsey et al. 1985; Szatmari et al. 1989; Venter et al. 1992). In general, gainful employment for adults with ASD is rare, as is sheltered employment, occupying less than 40% of adults with AD (Howlin 2003; Howlin et al. 2004). While outcome studies of autism into adulthood conducted since

(Howlin 2003; Howlin et al. 2004). While outcome studies of autism into adulthood conducted since 1992 reflect some steady improvements in employment rates, with 22–54% of participants reporting gainful employment on a full- or part-time basis (Ballaban-Gil et al. 1996; Farley et al. 2009; Howlin et al. 2004; Kobayashi et al. 1992; Venter et al. 1992), many of these individuals are underemployed based on their cognitive abilities and academic credentials.

**Forensic Problems** Involvement with police officers and other law enforcement agents has been recognized as a major concern for parents of adolescents and adults with ASD. A study of offending behavior in 33 individuals with Asperger Disorder (Allen et al. 2008) revealed that most engaged in violent or threatening behavior that was related to interpersonal problems including social or sexual rejection, bullying, or family conflict. Investigators have suggested offending behavior in ASD

rejection, bullying, or family conflict. Investigators have suggested offending behavior in ASD populations was likely to result from coercion by others, misinterpretation of social situations, or obsessional interests, while many with ASD may be protected by their tendency to adhere strictly to rules. Allen et al. (2008) found evidence of this insight in that the least common offenses identified among their population of offenders with Asperger Disorder were drug offenses, theft, fraud, sexual

among their population of offenders with Asperger Disorder were drug offenses, theft, fraud, sexual offending, and motor offenses. Cederlund et al. (2008) found that 10% (n ¼ 7) of their sample with Asperger Disorder had been involved with law enforcement officers, but the remainder was described as very law-abiding. None of the individuals in their lower functioning sample with autistic disorder had committed legal offenses. In the study by Farley et al. (2009), 29% of the sample was involved

had committed legal offenses. In the study by Farley et al. (2009), 29% of the sample was involved with law enforcement officers for infractions after childhood, but these were related exclusively to “suspicious” behaviors deriving from special interests, participants being coerced to engage in antisocial behavior by peers, and social misunderstandings.

**Future Directions** The prognosis for a majority of adults with ASD, based on studies conducted to date, is guarded. Future studies are needed to further define the subtypes of ASD, and the factors that influence adult outcome. Studies of genetics, brain imaging, and responses to interventions are likely to yield important information.

**Adulthood, Transition to**  **Definition** For the purposes of this entry, the transition to adulthood is defined as exiting the secondary school system, resulting in the termination of services received through the school system. High school “exit” is differentiated from “graduation,” as some individuals with Autism Spectrum Disorder (ASD) “graduate” with same-aged peers, but continue to receive secondary school services until age 22. We expect that these youth will be more affected by

receive secondary school services until age 22. We expect that these youth will be more affected by losing school services than by graduation. Thus, high school “exit” refers to the termination of school-based services.

**Historical Background** The transition to adulthood for adolescents without disabilities has traditionally been identified as completing a number of developmental tasks of adulthood. These tasks been well identified, stemming from Freud’s notion of “love and work” (cited by Hazan and Shaver 1990), and most often include leaving the parental home, finishing school and starting employment, and marrying and having children (Fussell and Furstenberg 2005). In recent years, however, the entry into

and having children (Fussell and Furstenberg 2005). In recent years, however, the entry into adulthood for typically developing individuals has become much more ambiguous and prolonged and these markers are often achieved more gradually, and not necessarily in as fixed an order as in the past (Furstenberg et al. 2005). It is increasingly common, for example, for youth to move out of the parental home and into a university residence, but then move back into the parental home for a time after the

and into a university residence, but then move back into the parental home for a time after the completion of their university studies. Additionally, it is often the case that men and women are living independently, have finished their schooling, and are engaged in full-time work activities but have not yet married or had children.

Arnett (2000) proposed the concept of emerging adulthood as a way to account for this heterogeneity in how individuals transition from adolescence to adulthood. The emerging adulthood period, Arnett (2000) explained, is distinct from adolescence and early adulthood because of its relative freedom from social roles and societal expectations. He suggested that the transition to adulthood is no longer best represented by demographic transitions, such as ending formal schooling, getting married,

best represented by demographic transitions, such as ending formal schooling, getting married, or having children. Instead, the criteria for the transition to adulthood are individualistic, encompassing concepts such as independence in decision making, being responsible for one’s own person, and financial independence (Arnett 2000).

When the adolescent in transition has ASD, the complexity implicit in defining the transition to adulthood is multiplied. Some developmental tasks of adulthood are obtained by most individuals with ASD, such as exiting school. Other tasks, such as moving out of the parental home or finding regular employment, are only achieved by a fraction of individuals with ASD, but these milestones can be modified to be attainable by many more (e.g., structured or semi-structured living arrangements,

be modified to be attainable by many more (e.g., structured or semi-structured living arrangements, supported employment). Finally, some tasks are attained by few individuals with ASD, such as getting married or having children. The criteria proposed by the emerging adulthood literature are similarly complicated; many individuals with ASD may never have complete independence in decision making nor have financial independence from both their families and federal or state agencies.

Because of these difficulties in definition, many researchers have forgone theory-based ideas of transition and instead defined the transition period for those with intellectual and developmental disabilities using specific ages (such as ages 18–26 in Blacher 2001). Alternatively, our research has chosen high school exit as a key indicator of the transition to adulthood for two reasons: (1) of all developmental tasks of adulthood, it is the most commonly attained by individuals with ASD; and

all developmental tasks of adulthood, it is the most commonly attained by individuals with ASD; and (2) nearly all transition studies on individuals with intellectual and developmental disabilities (not ASD) center around high school exit.

In contrast to typically developing adolescents in the USA – who exit high school at a prescribed time (at the end of twelfth grade) – considerable variability exists in the age at which adolescents and young adults with ASD exit the school system. Some exit with their same-aged, nondisabled peers, while others take advantage of the Individuals with Disabilities Education Act (IDEA) and remain in secondary school until their 22nd birthday. Although it may be simplistic to only consider high

in secondary school until their 22nd birthday. Although it may be simplistic to only consider high school exit as a marker of the transition to adulthood, this milestone provides a focused lens through which to examine the research related to the transition to adulthood for people with ASD. Although few studies have focused on high school exit for youth with ASD, there is considerable research among adults with ASD suggesting that they have difficulties integrating into adult society. Adults

among adults with ASD suggesting that they have difficulties integrating into adult society. Adults with ASD tend to live fairly dependent lives, are underemployed, with those who have employment often holding jobs that do not provide a living wage (for a review see Howlin 2005). The transition out of high school for youth with ASD (and other disabilities) has long been recognized by professionals and policy makers as an important turning point that sets the stage for later adult outcomes.

and policy makers as an important turning point that sets the stage for later adult outcomes. Perhaps the greatest evidence of this is the existence of federal legislation mandating specific requirements for transition planning for youth with disabilities, found in the IDEA of 1997 and the Individuals with Disabilities Education Improvement Act (IDEIA) of 2004. These legislative landmarks mandate that a transition plan must be included in the Individualized Education Plan when a student is 16

that a transition plan must be included in the Individualized Education Plan when a student is 16 years of age (although planning can start sooner) which facilitates “real-world” outcomes by focusing on improvement in education (postsecondary, vocational skills), adult services, independent living skills, and community participation. Furthermore, measurable goals must be developed that take into account the student’s needs, strengths, interests, and preferences. By examining the corpus of

into account the student’s needs, strengths, interests, and preferences. By examining the corpus of research on the transition to adulthood, it is clear that autism researchers have lagged behind policy makers and practitioners in recognizing the importance of this transition for youth with ASD. The few existing studies are summarized below.

**Current Knowledge** The transition to adulthood is associated with a slowing of improvement of the autism behavioral phenotype. (Taylor and Seltzer 2010) examined change over nearly 10 years in autism symptoms and behavior problems for a community sample of over 240 youth with ASD. The vast majority of these youth exited high school over the study period, allowing us to test changes in symptoms and behaviors while youth were in high school, as well as whether leaving high school impacted

and behaviors while youth were in high school, as well as whether leaving high school impacted that change. We found that all subscales of symptoms and behaviors were significantly improving while youth were in high school and that, in general, improvement significantly slowed down after youth with ASD exited the secondary school system. Although youth with ASD who did not have an intellectual disability (ID) had less severe symptoms and behavior problems than those who had ID as well as ASD

disability (ID) had less severe symptoms and behavior problems than those who had ID as well as ASD throughout the study period, the slowing of improvement following high school exit was more pronounced for youth with ASD who did not have ID, relative to those who had a comorbid ID. Furthermore, youth with ASD whose families had lower incomes were more negatively impacted by high school exit relative to youth whose families had higher incomes.

Similar patterns were observed in follow-up analyses (Taylor and Seltzer 2011a), which examined the impact of exiting high school on changes in the mother-child relationship over a 7-year period. We found improvements in three indices of the mother-child relationship – mother-child positive affect, subjective burden, and warmth – while youth with ASD were in high school. After high school exit, however, that improvement stopped – even after controlling for concurrent slowing of improvement in

however, that improvement stopped – even after controlling for concurrent slowing of improvement in behavior problems. Once again, whether the youth with ASD had a comorbid ID significantly predicted change in maternal warmth; those without an ID were more negatively affected by high school exit relative to those with a comorbid ID. Further, the number of needed services that were currently not being received also predicted change in the mother-child relationship. There was greater slowing of

being received also predicted change in the mother-child relationship. There was greater slowing of improvement in mother-child positive affect for youth who had more unmet service needs, relative to those who had fewer unmet needs. In sum, these studies provide evidence of a disruption in phenotypic improvement and parent-child relations in the years following high school exit for youth with ASD.

Youth with ASD without an ID might be more negatively impacted by exiting high school because they have a difficult time finding appropriate vocational or educational activities. This hypothesis was supported in a study by (Taylor and Seltzer 2011b), who examined the postsecondary educational and vocational activities of young adults with ASD who had exited high school an average of 2 years previous to data collection. We found that nearly 25% of the young adults who had ASD without ID had no

to data collection. We found that nearly 25% of the young adults who had ASD without ID had no or minimal vocational/educational activities, and those without ID were three times more likely to have no day activities than youths with ASD who also had comorbid ID. This divergent pattern likely does not represent a lack of abilities on the part of the youth with ASD, but instead the inadequacy of the current service system to accommodate the needs of youth with ASD who do not have ID as they are

current service system to accommodate the needs of youth with ASD who do not have ID as they are transitioning to adulthood. Indeed, in this sample, only 18% of young adults without ID were getting some sort of employment or vocational services (e.g., supported employment, sheltered workshop) compared to 86% of young adults with ID. Thus, the lack of appropriate services and limited options for educational/vocational activities for youth with ASD without ID after high school exit may be

for educational/vocational activities for youth with ASD without ID after high school exit may be responsible for the slowing of improvement observed during this time. Youth with ASD and a comorbid ID may be less affected as they more easily fit into the existing adult disability service system.

Limited services and opportunities after high school exit might also play a role in the greater negative impact of high school exit on youth with ASD whose families have lower incomes, relative to those whose families have higher income. A recent study by Shattuck et al. (2011) supports this hypothesis. Using a nationally representative sample, the authors found that nearly 40% of youth with ASD were receiving no services in the 2 years following their exit from high school. Furthermore, youth

were receiving no services in the 2 years following their exit from high school. Furthermore, youth whose families had lower incomes were more likely to be without formal services relative to youth whose families had higher incomes. It appears then that youth with ASD whose families have fewer economic resources also receive fewer adult services once they exit high school and services are no longer mandated, which likely explains (at least in part) why the pattern of improvement in their

longer mandated, which likely explains (at least in part) why the pattern of improvement in their behavior problems that was observed while they were in high school is more negatively impacted by exiting high school.

In sum, the small body of existing research focused on the transition to adulthood for youth with ASD suggests that it is a disruptive influence in the lives of these families, with the greatest disruption occurring for those who do not have ID, those whose families have fewer resources, as well as those who are underserved by the formal service system. In the following section we discuss the numerous directions for future research.

**Future Directions** Although our knowledge of how youth with ASD and their families are impacted by the transition to adulthood is in its infancy, it is critical that we better understand the mutable factors associated with a positive transition. As previously mentioned, employment and vocational outcomes of adults with ASD have much room for improvement. Furthermore, adults with ASD seem to be at additional risk for poor outcomes relative to even adults with other types of developmental

be at additional risk for poor outcomes relative to even adults with other types of developmental disabilities. Esbensen et al. (2010) found that adults with ASD had less optimal outcomes (as defined by less independence in their living arrangements, in their vocational placements, and less social connectedness) relative to a matched group of adults with Down syndrome. It appears then that adults with ASD might be a particularly vulnerable group as they move out of high school and into adult

with ASD might be a particularly vulnerable group as they move out of high school and into adult life. Future research should focus on the mutable factors that promote a successful transition to adulthood and optimal adult outcomes. So far, studies of risk factors for poor adult outcomes have focused on factors that are static and difficult to change. Adults with ASD who require substantial supports tend to have lower IQ scores, fewer functional abilities, and poor early language skills

supports tend to have lower IQ scores, fewer functional abilities, and poor early language skills (Billstedt et al. 2007; Eaves and Ho 2008; Farley et al. 2009; Howlin et al. 2004; Howlin et al. 2000). But while knowing an individual’s IQ and early language abilities helps predict adult outcomes, this information is less helpful in considering ways to improve outcomes. Malleable factors that impede positive outcomes or exacerbate negative outcomes may provide better avenues for intervention.

One promising factor is behavioral functioning, and specifically maladaptive behaviors. Maladaptive behaviors can be extremely disruptive for all adults with disabilities, including those with ASD. Taylor and Seltzer (2011b) found that young adults with ASD who had lower levels of maladaptive behaviors were more likely to be in college or working independently in the community in the years after high school exit. Those young adults with higher levels of maladaptive behaviors tended to either

high school exit. Those young adults with higher levels of maladaptive behaviors tended to either spend their time in sheltered settings (day activity programs, sheltered workshops) or to have no vocational activities. Maladaptive behaviors can be changed through both behavioral and pharmacological interventions (Aman et al. 2009; Matson et al. 2009; McCracken et al. 2002; Vismara and Rogers 2010), and thus constitute a promising factor that, if alleviated, could promote independence and

2010), and thus constitute a promising factor that, if alleviated, could promote independence and employment among adults with ASD.

Environmental resources are another set of malleable factors that have virtually been ignored by researchers studying outcomes for adults with ASD. Not only are the quality and availability of formal services likely important in promoting a positive transition to adulthood, but also the family environment. Family environments, characterized by high levels of criticism of the individual with ASD, predict significant increases in behavior problems (Greenberg et al. 2006); alternatively,

ASD, predict significant increases in behavior problems (Greenberg et al. 2006); alternatively, supportive, warm family environments predict decreases in behavior problems for these adults (Smith et al. 2008). Environmental resources can be altered through advocacy for better disability-related services and psychoeducational intervention to improve positivity in the family environment (Bernhard et al. 2006), and thus are also promising avenues for future research focused on promoting a positive

al. 2006), and thus are also promising avenues for future research focused on promoting a positive transition to adulthood for youth with ASD.

Finally, researchers should continue to consider what is meant by a “positive” transition to adulthood. Based on the current criteria for successful adult outcomes – living independently, working independently, and friendships – it is not difficult to come up with examples of young adults with ASD who appear to be transitioning “unsuccessfully,” but in actuality may be doing quite well in adulthood. A more holistic view of the transition to adulthood would be garnered by including measures of

A more holistic view of the transition to adulthood would be garnered by including measures of life satisfaction, community engagement, sense of purpose, or even by judging outcomes based on individualistic goals for adult life. Measuring constructs broader than employment and living arrangements when examining an individual’s transition success may also alleviate some of the bias against a successful transition for those young adults who have more functional limitations. Advocating the

a successful transition for those young adults who have more functional limitations. Advocating the inclusion of measures of life satisfaction or purpose does not mean to imply that the difficulties faced by individuals with ASD in attaining community employment and independence are not concerning, only that it does not represent the entirety of the transition to adulthood.

**Advocacy**  **Definition** Advocacy refers to the process by which an individual or a group of individuals support(s) a cause or protect(s) the rights of an individual or group of individuals. Disability advocates can be parents, professionals, or individuals with disabilities themselves (known as self-advocates). Advocacy exists on multiple levels, ranging from the individual level to advocacy related to change of social policy.

**Historical Background** Historically, advocates have been involved in many different issues, including education, healthcare, employment, housing, social opportunities, and more. In the education arena, advocates have been responsible for much of the legislation related to the special education laws in the United States. For example, a group of parents working with the Pennsylvania Association of Retarded Citizens (now known as the ARC) filed a complaint which eventually led to the passage

of Retarded Citizens (now known as the ARC) filed a complaint which eventually led to the passage of The Education for All Handicapped Children Act, the precursor to today’s Individuals with Disabilities Education Improvement Act (IDEIA). Through advocating at the national and state level, these advocates have sought to ensure that all children with disabilities receive a free and appropriate public education. With regard to autism spectrum disorders (ASD), many advocates have pushed states to

education. With regard to autism spectrum disorders (ASD), many advocates have pushed states to pass autism insurance legislation, in an attempt to prevent insurance companies from denying services to individuals with ASD. Currently, almost every state in the country has adopted or is considering autism insurance legislation. Advocates have also been involved in protecting the personal rights of individuals with disabilities. For example, advocates in states such as Pennsylvania have proposed

individuals with disabilities. For example, advocates in states such as Pennsylvania have proposed adult protective services laws, which would protect adults who are physically abused but unable to testify in court due to communication difficulties. This is particularly important in cases where physical evidence points to abuse, but a disability such as autism prevents the victim from testifying.

On an individual level, parents have always needed to advocate for services for their children with disabilities. In the education system, Congress has encouraged the development of parent advocates by increasingly including provisions in legislation which encourage parent involvement in educational decisions for their children. For example, parents are mandated participants in the process of developing individualized education programs (IEPs) for their children and are an integral part of IEP

individualized education programs (IEPs) for their children and are an integral part of IEP teams.

Similarly, Congress has empowered individuals with disabilities with rights to participate in their own education decisions. This has helped to create a new generation of self-advocates. At the age of 14, students with disabilities are invited to take part in the IEP process. Many IEPs for students with disabilities, including autism, include self-advocacy goals to help students learn to effectively communicate their needs and opinions. As a result, more and more individuals with disabilities

communicate their needs and opinions. As a result, more and more individuals with disabilities are becoming adults who possess effective self-advocacy skills. Not only are these adults adept at advocating on their own behalf, many of them effectively advocate for broader social change. Today, individuals with disabilities sit on national, state, and local advisory boards, which are charged with developing policy that directly affects the disability community.

The role of the professional advocate has also developed over time, particularly as the education and other service systems have expanded and become more complex. Attorneys are advocates by virtue of their training, but increasingly other professionals have labeled themselves as disability or child “advocates.” These professionals are not regulated nor accredited by any board. Nonetheless, many of them have a wealth of experience, which families have found helpful in advocating for services

of them have a wealth of experience, which families have found helpful in advocating for services for their children.

**Current Knowledge** There are a number of different disability advocacy organizations that exist today. Two of the oldest are the ARC (formerly Association of Retarded Citizens) and TASH (formerly American Association on Mental Deficiency). The National Disability Rights Network (formerly the National Association of Protection and Advocacy Systems) began more recently in the 1980s. As the prevalence of autism spectrum disorders has increased over time, advocacy organizations specific to ASD

of autism spectrum disorders has increased over time, advocacy organizations specific to ASD have been formed. Current autism advocacy organizations include the Autism Society of America, Autism Speaks, AutismNOW, Autism National Committee (AUTCOM), Autism Network International, the Autism Self Advocacy Network (ASAN), and the Global and Regional Asperger Syndrome Partnership (GRASP). The last four of these groups are self-advocacy organizations. Local autism support groups may also function as

of these groups are self-advocacy organizations. Local autism support groups may also function as advocacy organizations; additionally, these groups can be effective at teaching parents to become more effective advocates.

**Future Directions** Many advocacy organizations set short- and long-term agendas for their advocacy efforts. In the autism community, insurance legislation remains an area of concern in a handful of states across the country. Furthermore, despite new insurance laws in many states, funding for autism services remains incomplete and inadequate. Many advocates are expending great efforts to ensure that Medicaid and other federal and state programs are supported in the budget processes. Other

that Medicaid and other federal and state programs are supported in the budget processes. Other legislations that are currently supported by autism advocates include the IDEA Fairness Restoration Act (to override a Supreme Court decision disallowing parents to be reimbursed for expert witness fees), the Combating Autism Reauthorization Act of 2011 (providing support for research into the causes and treatments for ASD), the Caring for Military Kids with Autism Act (to reverse a Department of

and treatments for ASD), the Caring for Military Kids with Autism Act (to reverse a Department of Defense healthcare provision which does not recognize autism as a treatable condition), and the Autism Service and Workforce Acceleration Act of 2011 (to develop comprehensive treatment centers and to improve the transition into adulthood for youth with ASD). When legislation is involved, some advocacy organizations will distribute action alerts to their constituencies to encourage interested

organizations will distribute action alerts to their constituencies to encourage interested parties to send letters to legislators and public officials.

In addition to legislation, court cases may arise which affect the rights of individuals with disabilities. Advocacy organizations may submit amicus briefs related to a particular issue that affects their constituency. The self-advocacy organizations, in particular, have submitted amicus briefs in employment cases and cases involving restraint and seclusion.

Going forward, as more and more children with ASD age into adulthood, advocacy efforts may begin to focus even more toward issues related to employment, housing, and adult services. New legislation regarding autism insurance will lead to more questions related to its interpretation, and advocates will be needed to represent the interests of individuals with ASD and their families. Indeed, funding will likely always remain a key area of advocacy efforts, given persistent budgetary constraints.

will likely always remain a key area of advocacy efforts, given persistent budgetary constraints. In the education arena, in addition to the pending legislation related to expert witness fees in special education cases, federal legislation regarding the allocation of burden of proof in special education cases may be proposed. Currently states differ as to who has the responsibility to prove the case when the parent files the lawsuit but the educational authority (the school district) has the

case when the parent files the lawsuit but the educational authority (the school district) has the most access to evidence. Another development related to advocacy may be the development of more training programs for professional advocates. There are advocate training programs hosted by a range of organizations, from law schools, to educational agencies, to private individuals and companies. Many of these training opportunities have been helpful in educating parents about their own rights and

of these training opportunities have been helpful in educating parents about their own rights and may offer a broader perspective that enable these parents to better assist other parents as well. Nonetheless, as advocates become more involved in assisting parents in special education due process proceedings, there could be momentum to regulate advocate certificates (insofar as the certificates being offered do not provide licensure or credentialing).

**Affective Development**  **Definition** Affective development pertains to the emergence of the emotional capacity to experience, recognize, and express a range of emotions and to adequately respond to emotional cues in others. Emotions such as happiness or fear are defined as subjective reactions to experience that are associated with physiological and behavioral changes. Emotional functioning comprises several aspects, including the inducement and elicitation of internal physiological

comprises several aspects, including the inducement and elicitation of internal physiological states, the physiological pathways that mediate these internal states, the emotional expressions, and the perception of affect. Overt manifestations of affective expressions and responses include facial expressions, voice, postures, and movements. Affective development is intertwined with the development of social skills, and this psychosocial combination reflects one’s distinctive personality and

of social skills, and this psychosocial combination reflects one’s distinctive personality and tendencies when responding to others, engaging in social interactions, and adapting to the interpersonal world (Saarni et al. 2006). Individuals with autism have difficulties in emotional expressiveness and responsiveness and in the appropriateness of these emotional manifestations to the social context. Individuals with autism may exhibit limited empathic responsiveness and may demonstrate specific

Individuals with autism may exhibit limited empathic responsiveness and may demonstrate specific difficulties in face perception and face recognition, emotional regulation, and engagement in affective and social behaviors and contact with others. Some individuals with autism seem to manifest emotional flatness or aloofness and seem unresponsive to the social environment. It is most challenging for individuals with autism to reason about the emotional world of oneself and others, thus making it

individuals with autism to reason about the emotional world of oneself and others, thus making it more difficult to successfully engage in social situations (Sigman and Capps 1997).

**Historical Background** Kanner (1943) originally wrote that children with autism “have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handicaps.” (p. 250). Children with autism were originally described as aloof, unresponsive, or even emotionally detached, and the first studies regarding affective development in autism examined this issue of

detached, and the first studies regarding affective development in autism examined this issue of children’s emotional expressiveness. Early reports indicated that children with autism did not appear less emotionally expressive than children with mental retardation or than typically developing children (Capps et al. 1993; Ricks and Wing 1975). However, parents reported that their children with autism experienced higher levels of negative emotions such as fear, sadness, and anger and lower levels

experienced higher levels of negative emotions such as fear, sadness, and anger and lower levels of positive emotions such as joy and interest, compared to the reports of parents of children with mental retardation and typically developing children (Capps et al. 1993). Researchers investigated whether children’s emotional expressions and responses (e.g., smiles, laughter, or even temper tantrums) were socially adequate and context appropriate. Findings revealed that children with autism

were socially adequate and context appropriate. Findings revealed that children with autism sometimes manifested discordant affects or deficits in displaying positive affect and coordinating gaze with emotional expression to reveal sharing of emotional experience (Kasari et al. 1990, 1993; Yirmiya et al. 1989). For example, children with autism generally did not look up at their parents and smile when responding to parental praise for an accomplishment, whereas children with typical development

when responding to parental praise for an accomplishment, whereas children with typical development or mental retardation generally did. Other studies on children with autism pinpointed difficulties in coordinating and pairing facial expressions with vocal expressions of emotions, with prosodic and linguistic expressions of emotions, or with body gestures (Hobson 1986; Van lancker et al. 1989). Interestingly, most studies on children and adolescents with high-functioning autism or Asperger

Interestingly, most studies on children and adolescents with high-functioning autism or Asperger syndrome revealed no difficulties in labeling facial expressions, especially of the basic emotions of happiness, sadness, anger, fear, surprise, and disgust (Braverman et al. 1989; Capps et al. 1992; Hobson et al. 1989; MacDonald et al. 1989; Ozonoff et al. 1990; Yirmiya and Sigman 1991). Current studies are now focusing on measuring emotional recognition abilities and more subtle emotions in

studies are now focusing on measuring emotional recognition abilities and more subtle emotions in individuals with autism with normal intelligence using more fine-grain measures (Golan et al. 2006, 2008; Happé 1994). These atypicalities in affective development are currently widely accepted as features of autism, but their underlying causes remain a matter of debate. Some investigators consider the difficulties in affective development as secondary to, or as the result of, impairments in the

the difficulties in affective development as secondary to, or as the result of, impairments in the development of social-cognitive abilities such as perspective-taking capacities or theory of mind (ToM) abilities (Baron-Cohen et al. 1985; Happé and Frith 2006), whereas other investigators consider abnormal affective development to be a core deficit in autism (Hobson 1993). According to the latter approach, individuals with autism reveal difficulties in their biologically based and innate

latter approach, individuals with autism reveal difficulties in their biologically based and innate capacity to perceive, decode, and understand emotional cues and expressions, which results in a failure to establish the mentalizing functions needed for appropriate social interactions. Today, there is growing awareness that mentalizing and ToM abilities contribute to the understanding of emotions and vice versa. Two-year-old toddlers are already able to decode facial expressions, but only a

and vice versa. Two-year-old toddlers are already able to decode facial expressions, but only a year later – using the emerging ToM abilities – can they also recognize the internal mental or emotional states that are reflected by these facial expressions. In turn, young children’s growing understanding of basic emotions facilitates and promotes their mentalizing abilities and their comprehension that desires differ from reality (Sigman and Capps 1997).

**Current Knowledge** **Affective Development in the Early Years** Caregivers facilitate the affective development of their children by supporting and scaffolding the emerging emotional capacities of their children. Infants come into the world equipped with a strong drive to emotionally engage with others. Affective Development Newborns are prepared to engage in mutual affective regulation, a process by which the infant and the caregiver communicate emotional states to each other and respond

by which the infant and the caregiver communicate emotional states to each other and respond appropriately and sensitively (Jaffe et al. 2001; Kogan and Carter 1996; Stern 1985; Trevarthen 1993; Tronick 1989; Weinberg and Tronick 1996). In the first weeks of life, babies fluctuate between several states of arousal such as crying, sleeping, drowsiness, and alertness, with limited ability to control and regulate these shifts. As the neurological and physiological system becomes more mature and

and regulate these shifts. As the neurological and physiological system becomes more mature and integrated, and the environment provides responsive parental care, infants become better able to regulate states of arousal. They spend more time awake, looking around and exploring social stimuli such as faces, as well as smiling, cooing, and laughing. Their emotional states can be easily seen during parent–child face-to-face interactions, in which infants take an active part in mutual regulation by

face-to-face interactions, in which infants take an active part in mutual regulation by sending and signaling behavioral and emotional cues such as smiles, gazes, or vocalizations. This synchronized match or “dance” between parent and child is an important mechanism underlying socio-affective development and is considered a prerequisite for later emotional functioning, empathy, and prosocial behaviors (Feldman 2007; Feldman et al. 1999). It was found that toddlers who showed high sensitivity

(Feldman 2007; Feldman et al. 1999). It was found that toddlers who showed high sensitivity and attention to emotional cues at the age of 2 years were more socially responsive with their peers, both at age 2 and at age 5. These factors may also render reciprocal effects, where children learn about emotions through their relationships with others. In sum, affective development in the first years is influenced by genetic, biological, and environmental factors and is strongly related to children’s

influenced by genetic, biological, and environmental factors and is strongly related to children’s temperament and to the development of the parent–child relationship and attachment.

Recent evidence is accumulating regarding different affective developmental trajectories of young children with autism, compared to children with typical development. Retrospective accounts, obtained from parents’ reports and home videotape analyses of the first 2 years, revealed that children with autism differ from children with typical development in social-emotional behaviors, describing difficulties in affect regulation as well as increased negative affect and ambiguous affective

difficulties in affect regulation as well as increased negative affect and ambiguous affective expressions (Baranek 1999; Maestro et al. 2005; Osterling et al. 2002). Prospective studies of siblings of children with autism – a group considered at risk for the development of autism and related difficulties – demonstrated that 12- to 18-month-old infants later diagnosed with autism are distinguishable from other infants who were not later diagnosed with autism in several social-emotional aspects,

from other infants who were not later diagnosed with autism in several social-emotional aspects, such as reductions in expression of positive emotion, social smiling, reactivity, and social interest as well as atypicalities in eye gaze, imitation, and orienting to name (Ozonoff et al. 2010; Young et al. 2009; Zwaigenbaum et al. 2005, 2009). Interestingly, these early manifestations were not extended downward; 6-month-old infants later diagnosed with autism were not distinguishable from

extended downward; 6-month-old infants later diagnosed with autism were not distinguishable from 6-month-old infants who were not later diagnosed with autism in their affective expressions or in their social use of gaze and affect during social interactions with mutual sharing of attention and affect (Rozga et al. 2011). Furthermore, 24-month-old toddlers later diagnosed with autism were also distinguishable from their non-diagnosed peers in their temperament profiles, as marked by lower

distinguishable from their non-diagnosed peers in their temperament profiles, as marked by lower positive affect, difficulties in regulating negative affect, as well as lower feelings of excitement in situations of anticipation (Brian et al. 2008; Bryson et al. 2007). Thus, these important studies on the early affective development of young children with autism provide evidence regarding the presence of difficulties in affect displays and emotional regulation in the first years of life.

**Affective Development in Childhood** Emotional development and sense of self are rooted in the experience of early childhood and continue to develop over the childhood years. Typical affective development in these years pertains to understanding and regulating emotions and to the organization of self-concept. As they grow, children become more aware of their own and other people’s emotions, can better regulate and control their feelings, respond with more empathic behaviors, and show more

can better regulate and control their feelings, respond with more empathic behaviors, and show more acceptable emotional expressions. Through interacting with peers and their emerging friendships, children learn about their own emotions, become aware that individuals have different emotional reactions, and can better reflect on others’ motives and intentions during complex social-emotional situations. Children must also cope with the emotional challenges associated with social developmental

Children must also cope with the emotional challenges associated with social developmental milestones during childhood, such as demands for social conformity, overt competition with others, and mastery of different academic skills (Saarni et al. 2006).

Children with autism face the same challenges as do typically developing children. Although some children with autism may master many academic skills, they have great difficulties managing everyday emotional and social situations in which an array of emotional and social cues must be recognized, interpreted, and synthesized quickly and simultaneously (Baron-Cohen 1995; Bauminger et al. 2008). Clearly, children with autism manifest great variation in their desire to form emotional connections

children with autism manifest great variation in their desire to form emotional connections with peers and adults, as well as in their ability to perceive and respond to the emotions of others. Studies regarding the understanding and experience of social emotions such as pride, embarrassment, or empathy revealed that school-age children with autism reported having these feelings as often as typically developing children; however, in their description of situations containing social emotions,

developing children; however, in their description of situations containing social emotions, they tended to describe more basic emotions (e.g., happy instead of proud) and to describe them more generally and less personally or interpersonally (Kasari et al. 2001). Researchers examining affective development of children with autism also revealed strong associations between higher cognitive abilities and better understanding of emotional situations (Dyck et al. 2001; Golan et al. 2006),

abilities and better understanding of emotional situations (Dyck et al. 2001; Golan et al. 2006), suggesting that cognition is an important moderating variable in affective development, as well as in compensatory strategies that children use to cope in emotional or social situations (Capps et al. 1992; Kasari et al. 2001). It has been suggested that the impaired performance of children with autism on measures of emotional functioning may be secondary to difficulties in cognitive or ToM

autism on measures of emotional functioning may be secondary to difficulties in cognitive or ToM abilities, as well as to difficulties in linguistic and pragmatic capacities. Indeed, emotion perception difficulties are not specific to autism but have also been detected in individuals with other disabilities such as learning disabilities, mental retardation, and schizophrenia (Davis and Gibson 2000; Edwards et al. 2001; Zaja and Rojahn 2008). Most of the evidence regarding affective development

Edwards et al. 2001; Zaja and Rojahn 2008). Most of the evidence regarding affective development during childhood comes from studies of high-functioning children with autism. Children with autism who are low functioning in terms of cognitive abilities and are unable to speak and comprehend language continue to struggle with earlier affective developmental tasks even in childhood. They usually remain more engaged with objects and have few social interactions with peers, and they face challenges

more engaged with objects and have few social interactions with peers, and they face challenges in learning alternative ways to communicate (Sigman and Capps 1997).

**Affective Development in Adolescence and Adulthood** Adolescence, the developmental transition between childhood and adulthood, entails major physical, cognitive, and psychosocial changes. Adolescence enables vast opportunities for growth and autonomy and for its major developmental task – the search for personal identity. Adolescents must deal with physical alterations and sexual maturity as well as with the development of emotional independence from their parents and families by

as well as with the development of emotional independence from their parents and families by reorganizing their relationships with parents, siblings, and peers. Their emerging metacognitive thinking enables better comprehension and understanding of complex social and emotional situations, facilitating the capacity for self-consciousness and empathic responsiveness (Saarni et al. 2006).

Adolescents with autism have difficulties talking about their emotional experiences as well as about more complex social emotions other than the basic emotions such as happiness or fear. They also exhibit difficulties in their ability to empathize and recognize the emotions of others compared to adolescents with typical development who are matched on gender and on verbal and cognitive abilities (Capps et al. 1992). In their descriptions of subjective experiences, adolescents with autism tend

(Capps et al. 1992). In their descriptions of subjective experiences, adolescents with autism tend to attribute emotions to material circumstances and events rather than to interpersonal interactions or the attainment of a goal to a greater extent than do adolescents with mental retardation or adolescents with typical development (Jaedicke et al. 1994). For example, the descriptions of emotions by adolescents with autism tend to be more idiosyncratic and peculiar than the descriptions of

by adolescents with autism tend to be more idiosyncratic and peculiar than the descriptions of emotions by adolescents in the comparison groups, who tend to link emotions to academic, social, and athletic successes or failures. Furthermore, the task of talking about feelings was more distressful for adolescents with autism; they appeared to struggle with the task and needed prompting and more time to respond compared to adolescents with typical development (Yirmiya and Sigman 1991).

more time to respond compared to adolescents with typical development (Yirmiya and Sigman 1991). Interestingly, it has been demonstrated that adolescents with autism showed better emotional responsiveness abilities than younger children with autism when asked to respond to videotaped stories about children experiencing different events and emotions such as happiness, anger, or sadness (e.g., a boy is sad because he lost his dog). These findings suggest that as children with autism get older,

boy is sad because he lost his dog). These findings suggest that as children with autism get older, their emotional responsiveness improves. However, these findings were not yet examined using longitudinal research designs and thus need further investigation (Sigman and Capps 1997).

As in childhood, during adolescence verbal and cognitive capacities play a major role in navigating one’s developmental course. For some adolescents with autism, the widening gap with typical development may be associated with an aggravation of behavioral symptoms and poorer social functioning. It appears that the increasing complexity of adolescents’ social and emotional world, and their engagement in more sophisticated interpersonal interactions, outstrips their advances in social and

engagement in more sophisticated interpersonal interactions, outstrips their advances in social and emotional functioning. Furthermore, difficulties in cognition and social understanding hinder adolescents’ adjustment to their own growing physical and psychological alterations, making the adaptation process for this new developmental phase more challenging (Sigman and Capps 1997).

Few longitudinal studies have been conducted to follow children and adolescents with autism into adulthood; therefore, little information is available on affective development after this important turning point in life. The transition from adolescence to adulthood for individuals with autism is usually associated with exiting the school system and entering the adult service system, which is sometimes accompanied by the loss of many entitled services. There is evidence for social and

is sometimes accompanied by the loss of many entitled services. There is evidence for social and psychiatric disorders in adults with autism that appear to increase with age. For example, adults with autism were found to engage in fewer social and recreational activities and also reported fewer friendships and peer relationships than at younger ages. However, other studies revealed that compared to typically developing individuals, adults with autism did not spend more time alone and were

to typically developing individuals, adults with autism did not spend more time alone and were equally involved in social activities; however, they experienced increased social anxiety when in the company of less familiar people. Indeed, more longitudinal research is needed to expand this exploration of social functioning to incorporate emotional abilities in adulthood (Billstedt et al. 2011; Howlin et al. 2004).

**Future Directions** Infants share common patterns of affective development; however, each infant shows a distinct emotional profile from the first days of life. Exploring the associations between early emotional style and later development of autism will contribute both to early identification of autism spectrum disorders and to early intervention programs (Dawson et al. 2010; Landa et al. 2010; Rozga et al. 2011). Furthermore, social interventions which are focused on understanding and

2010; Rozga et al. 2011). Furthermore, social interventions which are focused on understanding and recognizing more complex social emotions and mental states (e.g., embarrassment, irony) may strongly enhance problem solving abilities in social situations and social engagement (Lopata et al. 2010). Indeed, the issue of generalization of acquired social-emotional abilities to other social situations and to everyday life social interactions is most challenging, and further research is needed to

and to everyday life social interactions is most challenging, and further research is needed to evaluate the efficacy of social-emotional intervention.

**Afghanistan and Autism**  **Abstract** The people of Afghanistan continue to hurt from the effects of decades of invasion and civil war. While there have been some efforts to support the physically disabled population of Afghanistan, there is less support for individuals with intellectual and mental disabilities; specifically, there is no support for children and adults with autism. This entry begins by introducing the history of autism-spectrum disorder (ASD) and the various legislative and

begins by introducing the history of autism-spectrum disorder (ASD) and the various legislative and political efforts in place in Afghanistan to support general disabilities. Furthermore, it addresses the lack of support for people specifically with autism in Afghanistan in regard to research and treatment of the condition. This is measured by the lack of nationwide recognition and awareness of autism, screening and diagnosis, and treatment for those afflicted with it. In addition to

of autism, screening and diagnosis, and treatment for those afflicted with it. In addition to recognizing the severe lack of mental health resources in general, this entry also addresses the various cultural and social perceptual issues with autism and mental disabilities in Afghanistan. The aim of this entry is to acknowledge and understand the deep historical, political, economic, and social influences individuals and families affected by autism face in Afghanistan so that the country and its

individuals and families affected by autism face in Afghanistan so that the country and its allies may begin to effectively tackle autism.

**Historical Background** The earliest known description of autism was by Leo Kanner in the mid-twentieth century. In his report on 11 cases of children with seemingly autistic characteristics, he described these children as being removed from the social world and having a resistance to change or “insistence on sameness” (Kanner 1943). He believed that the condition they had was congenital. Autism was not recognized as an individual diagnosis right away as it was conflated with false leads and

was not recognized as an individual diagnosis right away as it was conflated with false leads and unclear symptoms (compared to other mental disorders such as schizophrenia) (Volkmar and Reichow 2013). At the time, parents (mainly mothers) were blamed for the condition of their children as there was a lack of understanding of the genetic cause of the condition. Autism was better understood in the 1970s after further quantitative research showed high rates of associated intellectual disabilities

1970s after further quantitative research showed high rates of associated intellectual disabilities and a genetic basis for the condition (Volkmar and Reichow 2013).

Autism was first recognized as a mental disorder in the Diagnostic and Statistical Manual of Mental Disorders-III (DSM-III) in 1980. The DSM-III was mainly focused on infantile autism and a child’s lack of social responsiveness (Volkmar and Reichow 2013). The DSM-III included autism in a class of disorders known as pervasive developmental disorder (PDD) (Volkmar and Reichow 2013). Later revisions of the DSM-III such as the DSM-III-R, DSM-IV, and finally the current revision used today, DSM-V,

of the DSM-III such as the DSM-III-R, DSM-IV, and finally the current revision used today, DSM-V, included more accurate definitions of autism based on various reviews of literature and field studies around the world (Volkmar and Reichow 2013). In addition to having better diagnostic behavioral descriptions, it also adopted a refined description of the class of the disorder known as “autism spectrum disorder” (replacing PDD) (Volkmar and Reichow 2013). Today the DSM-Vis used to screen and

spectrum disorder” (replacing PDD) (Volkmar and Reichow 2013). Today the DSM-Vis used to screen and diagnose individuals who are at risk for autism. According to the Afghan Ministry of Public Health in the National Mental Health Strategy 2009–2014, diagnostic descriptions from classification systems such as the DSM-Vor the ICD 10 (International Classification of Diseases 10) have limited utility in Afghan society (Ministry of Public Health 2009).

Research shows that structured behavioral, communicative, and educational intervention programs are effective and associated with better outcomes for children with ASD (Volkmar et al. 2014, volume 53, issue 2). The treatment options range from highly intensive and individualized one-on-one teaching every week to various pragmatic language skills training and group social skills workshops (Volkmar et al. 2014, volume 53, issue 2). Various institutions exist in America to support individuals

et al. 2014, volume 53, issue 2). Various institutions exist in America to support individuals with autism including specialized day schools and boarding schools. Other programs focus on training parents to be better caretakers for their children. Overall, there are a range of effective treatments and solutions for managing individuals with autism and teaching them effective social and life skills. Notably, the majority of these studies and treatments exist in affluent English-speaking

skills. Notably, the majority of these studies and treatments exist in affluent English-speaking countries such as the UK and the USA, and there is a severe lack of literature in effective treatment options for individuals with autism in developing countries (Samadi and McConkey 2011).

**Legal Issues, Mandates for Service** When trying to understand the relevant policy and nationwide efforts concerning autism, it is important to note that, as is the case in other developing countries, autism is referred to as a general “disability” in Afghanistan. Therefore, policies and legislations that concern autism will fall into this general category rather than specifically focusing on autism. It is also important to recognize that a significant proportion of people categorized as

on autism. It is also important to recognize that a significant proportion of people categorized as “disabled” in Afghanistan are those who suffer from war-related injuries and illnesses rather than congenital disabilities such as autism.

In recent history, the Afghan government has taken various legislative steps toward advancing the rights of people with disabilities. First and foremost is the constitution of Afghanistan created in 2004 that addresses the rights and the inclusion into society of people with disabilities in the following articles (Sida 2014):

1. Article 22 prohibits any discrimination between Afghan citizens. 2. Article 53 provides for financial aid to persons with disabilities and guarantees their “active participation and reintegration into society.”
3. Article 84 makes provision for two persons with disabilities to be appointed by the president as Members of Parliament in the House of Elders.

In addition to constitutional legislation, various national policies were also put into place to help people with disabilities. This included the National Policy for Persons with Disabilities created in 2004 which was joined with the Afghanistan National Disability Action Plan (ANDAP) in 2008–2011 to improve the access to education, employment, protection, justice, care, and social assistance and insurance for people with disabilities (Sida 2014). In recent years, the National Law of Rights

and insurance for people with disabilities (Sida 2014). In recent years, the National Law of Rights and Benefits of People with Disabilities has further provided economic, social, and political support to people with disabilities and protected their rights and participation in society (Sida 2014). More specifically it allocated 3% of government and private sector jobs to be reserved for people with disabilities. Another important governmental program is the National Strategy for Disability and

disabilities. Another important governmental program is the National Strategy for Disability and Rehabilitation 2013–2016 developed with the support of the UN and the EU (Sida 2014). However, it is important to note that these programs are largely concerned with physical disabilities, leaving intellectual disabilities on the periphery.

Other outside parties have also tried to make strides in improving mental health services in Afghanistan for those who are disabled. According to the Human Rights Watch, the United Nations Security Council Resolution 2475 was recently adopted in order to protect and safeguard individuals with disabilities in areas of conflict. The resolution urged governments to enable the participation and representation of individuals with disability in humanitarian action and peacebuilding (Human Rights

of individuals with disability in humanitarian action and peacebuilding (Human Rights Watch 2019).

**Overview of Current Treatments and Centers** Afghanistan severely lacks the institutions and training for a proper mental health system. Due to the decades of war and instability, much of the educated and professional workforce has left the country (Ventevogel 2006). There is a single mental health hospital in the capital city of Kabul and another single psychiatric hospital in Herat (Ventevogel 2006). Aside from other small inpatient facilities for psychiatric patients scattered around the

2006). Aside from other small inpatient facilities for psychiatric patients scattered around the country, there are no other viable options for individuals seeking mental health services. According to Peter Ventevogel of the UNHCR, the way forward in Afghanistan is to move away from hospital-based psychiatry toward a system of mental health integration in primary care services (Ventevogel et al. 2006).

Educational opportunities and resources for people with disabilities in Afghanistan are also quite limited. The Ministry of Education (MoE) is responsible for supporting inclusive education and access to schools for children with disabilities as of 2004 (Trani et al. 2009). Other than nongovernmental organizations, the only governmental special education facility in all of Afghanistan is a nonresidential school for children with visual impairments in the capital city Kabul (90 children are

school for children with visual impairments in the capital city Kabul (90 children are enrolled). According to Jean Francois Trani, many of the problems both the MoE and the MLSAMD face in meeting the needs of people with disabilities are due to a lack of clear vision (Trani et al. 2009). There is inability to expand the definition of disability, and while there are many programs that cater to the needs of war-disabled people, there are less programs dedicated to those with congenital

to the needs of war-disabled people, there are less programs dedicated to those with congenital disabilities. Other obvious concerns are continual conflict and war, insufficient financial resources, and an inability to reach individuals in rural areas of the country. The lack of infrastructure and efficient transportation routes in Afghanistan makes any effort to send aid to disabled citizens living in rural areas difficult.

When the Republic of Afghanistan was established in 2003, the government inherited decades of turmoil to healthcare institutions and a population in great demand of medical attention. A major problem the country faces is a lack of funding for mental health services. In 2004, the health budget of Afghanistan was 289.4 million USD, but only 100,000 USD was allocated toward mental health (WHO-AIMS 2006, p. 1). A study conducted based on data from 2004 reported that there are only 34 hospital beds

p. 1). A study conducted based on data from 2004 reported that there are only 34 hospital beds and 13 general practitioners per 100,000 population dedicated to mental health (WHO-AIMS 2006, p. 1). The private sector has an additional small percentage of hospital beds. Furthermore, the study showed that there are 3900 physician-based primary healthcare clinics in the country (about half private and half public) and 3100 non-physician-based primary healthcare clinics (WHO-AIMS 2006, p. 1). Recent

half public) and 3100 non-physician-based primary healthcare clinics (WHO-AIMS 2006, p. 1). Recent legislative work in the area has focused on increasing psychosocial services in primary healthcare clinics. The study by the WHO also showed that there are other mental health centers in the country including mental health outpatient facilities. There are 11 of these facilities in the country, and none of them are for adolescents or children. The majority of patients seen at these centers are

none of them are for adolescents or children. The majority of patients seen at these centers are diagnosed with mood disorders or anxiety disorders. Day treatment centers are another type of resource; however, there is only one 1-day treatment center in the entire country. There are five community-based psychiatric inpatient units, but again none of these beds are reserved for children or adolescents, and the majority of patients have schizophrenia or mood disorders (WHO-AIMS 2006, p. 1).

It is important to notice that there is little to no attention to children with mental disorders or disabilities in Afghanistan. Not only are there no hospital beds specifically allocated for adolescents with mental health disorders, but there are also no institutionalized centers for screening or diagnosing mental health disorders. Parents who are worried about their child’s behavior in cases such as autism have to take their children to psychiatric centers or mental health outpatient

cases such as autism have to take their children to psychiatric centers or mental health outpatient facilities designed for adults. There are no centers in Afghanistan for individuals who may potentially have autism to seek help or even receive a diagnosis.

The security crisis in Afghanistan presents another major challenge for any governmental or NGO initiatives related to autism. According to the WHO, in 2018 there were 85 attacks on healthcare centers in Afghanistan (World Health Organization 2019, p.11). Therefore, any community center or treatment center would have to take security concerns into consideration. For this reason, perhaps home-based or parental training services may be safer and have a larger impact on autism care in the short

or parental training services may be safer and have a larger impact on autism care in the short term.

**Overview of Research Directions** A major problem for tackling autism in Afghanistan is surveying the prevalence of the condition in the country. The first step toward helping individuals with autism in Afghanistan is to find the distribution and prevalence of the condition in the country. This is necessary to make meaningful programming or policy-driven change for individuals with autism. In 2005, the National Disability Survey in Afghanistan (NDSA) surveyed 5250 households for the

In 2005, the National Disability Survey in Afghanistan (NDSA) surveyed 5250 households for the prevalence of disabilities. The study found a general 4.6% prevalence rate (95% CI 4.4 to 4.8%) of disability in Afghanistan (Trani 2008). This amounts to approximately 1.09 million Afghans with some form of physical disability and/or mental distress (Trani 2008). Furthermore, the prevalence of individuals classified with “severe disabilities” was estimated at 2.7% of the population (Trani 2008). This

classified with “severe disabilities” was estimated at 2.7% of the population (Trani 2008). This was marked by individuals with functional limitations due to physical, intellectual, or sensory disabilities as well as mental illness. Jean-Francois Trani argues that surveys such as these must take a multidimensional approach using different instruments such as impairments, activity limitations, and assessments of well-being. Furthermore, studies of disability prevalence must go beyond

and assessments of well-being. Furthermore, studies of disability prevalence must go beyond measurements of prevalence and into the associations these disabilities have with individual’s social agency and functioning levels in their environments.

Trani’s criticism of the NDSA is important to acknowledge, especially when considering the possibility of a nationwide survey on the prevalence of autism. The National Institute of Mental Health characterizes autism as a “spectrum” disorder because there is a wide variety in the type and severity of symptoms associated with the condition (National Institute of Mental Health 2018). People with ASD have difficulty with social interaction and communication and may show restrictive and repetitive

have difficulty with social interaction and communication and may show restrictive and repetitive behaviors. However, when training professionals to screen for ASD, especially in developing countries, it is important to note that not all people with ASD will show these behaviors.

A study reviewing a 2011 initiative in Iran to identify autism prevalence in the country described two challenges in screening for autism in developing countries (Samadi and McConkey 2011). Since ASD is a condition with a wide spectrum of associated behaviors, the first challenge to the screening process is training professionals to oversee screening and diagnostic services. Also, since the majority of screening tests are made in developed countries with a different cultural context compared

of screening tests are made in developed countries with a different cultural context compared to Afghanistan, there is a need for a culturally relevant screening process individualized to certain cultural contexts. The second challenge arises when using parental responses to interviews. Oftentimes, parents may not be educated or observant of the various signs that their children display (Samadi and McConkey 2011). As is the case in Iran, parents may even underreport their child’s difficulties

and McConkey 2011). As is the case in Iran, parents may even underreport their child’s difficulties in order to keep them from being referred to special schools or in fear of social stigmatization (Samadi and McConkey 2011). This can cause survey results to indicate a lower prevalence of ASD than what actually exists. On the other hand, if parents also know that their child will be given specific aid or specialized attention, they may exaggerate their child’s condition (Samadi and McConkey

aid or specialized attention, they may exaggerate their child’s condition (Samadi and McConkey 2011). Since Afghanistan has many shared cultural contexts as Iran, many of these lessons are essential to keep in mind when designing a plan to screen the prevalence of ASD in the country.

**Overview of Training** Training of mental healthcare professionals in Afghanistan is a present-day challenge, and many of the problems the country faced in the past still remain today. There is a lack of emphasis on the importance of mental health training in the country. A WHO study based on data from 2004 found that less than 1% of training for medical doctors in Afghanistan was dedicated toward mental health. Likewise, only 2% of training for nurses was dedicated to mental health

toward mental health. Likewise, only 2% of training for nurses was dedicated to mental health (WHO-AIMS 2006, p. 1). The study further reported that only 2 psychiatrists, 61 other doctors, 37 nurses, and 40 other mental health workers worked in public mental health units (WHO-AIMS 2006, p. 1). In addition to the serious lack of mental health training in Afghanistan, the WHO study also showed a severe shortage of mental health professionals in the country. The study showed a shocking number of

shortage of mental health professionals in the country. The study showed a shocking number of only 0.5 human resource workers per 100,000 in the population (WHO-AIMS 2006, p. 1). There was a deficiency in the number of psychiatrists, medical doctors, nurses, medical assistants, and psychosocial counselors in Afghanistan. Furthermore, the majority of mental healthcare professionals work in adult mental hospitals, which, in the case of autism, would not be an appropriate place for one to take

mental hospitals, which, in the case of autism, would not be an appropriate place for one to take their child to be screened or diagnosed (World Health Organization 2019). In 2009, the Government of the Islamic Republic of Afghanistan (GOIRA) and the Ministry of Public Health (MoPH) published a National Mental Health Strategy (NMHS) with the following aims (Sayed 2011):

*   To promote mental health of the people of Afghanistan *   To minimize the stigma and discrimination attached to mental disorders *   To reduce the impact of mental disorders on individuals, families, and the community
*   To prevent the development of mental health problems and mental disorders, wherever possible
*   To provide quality, integrated, evidence and rights-based care for individuals suffering from mental disorders at all levels of health system

The program was completed in 2014 and aided the country in implementing a mental health plan to the country’s Basic Package of Health Services. This includes a continuum of mental healthcare for Afghans with mental, neurological, and substance abuse disorders in hospital and community centers. Proving significant strides forward to the future of psychiatry and mental health training in Afghanistan was a study by Yousuf Rahimi in 2012 on the training of mental health professionals in

Afghanistan was a study by Yousuf Rahimi in 2012 on the training of mental health professionals in Afghanistan. The study revealed around 60 locally trained psychiatrists working in the country (Rahimi and Azimi 2012). Furthermore, it was shown that neuropsychiatry was being taught in the latter years of medical school and that a 3–5-year postgraduate program was introduced in psychiatry by the Ministry of Public Health, taking place in the psychiatric hospitals in Kabul and other regional

Ministry of Public Health, taking place in the psychiatric hospitals in Kabul and other regional hospitals (Rahimi and Azimi 2012). This shows a promising commitment toward mental health training in Afghanistan since the previous studies done in 2004.

Further showing that the future of mental health in Afghanistan is not all bleak is a recent publication on the importance of developing a culturally relevant counseling psychology degree program in Afghanistan. In the paper, researchers surveyed counselors studying at Kabul University and Herat University for their opinions on the qualities that are important for a counselor to possess. The Afghan counselors surveyed generally agreed that professionals must be knowledgeable on Afghan cultural

counselors surveyed generally agreed that professionals must be knowledgeable on Afghan cultural values and customs, in addition to their expertise in international standards for counseling (Akesson et al. 2018). This is an especially important concept when it comes to leading initiatives related to autism in Afghanistan. This is because the majority of research and methods for coping with autism have been constructed in developed countries using Western individuals with autism. As the

autism have been constructed in developed countries using Western individuals with autism. As the counselors recommended in the paper, it is important to consider the Afghan cultural and religious context when approaching any psychological condition.

**Social Policy and Current Controversies** An important aspect of analyzing cultural perceptions of disabilities is through the lens of language. Language and words are the tools we use to understand the world around us. Mayub is the word in Dari (one of the two most common spoken languages in Afghanistan) that describes people who are disabled by birth through various congenital factors, diseases, or malnutrition (Bakhshi et al. 2006). Malul is the word that describes people who are disabled

or malnutrition (Bakhshi et al. 2006). Malul is the word that describes people who are disabled by an accident such as war, land mines, or sickness developed later in life. Finally, diwana is a colloquial word that relates to any impairment of the mind. This can mean intellectual disabilities as well as mental illness. People labeled as diwana face social stigmatization from both their communities and families (Bakhshi et al. 2006).

Unfortunately, oftentimes in Afghan society, individuals with mental disabilities are seen as diwana rather than mayub. A child who does not play with other children or does not make proper eye contact is seen as slow or intellectually challenged rather than disabled. Oftentimes families will look down upon this child and give more attention to the child who is funny, witty, or social. This causes further neglect to the child with a disability. Parents will see this as a phase or a learning

further neglect to the child with a disability. Parents will see this as a phase or a learning problem that will fix itself over time. This can cause a major problem for children with autism by delaying the age at which the disability is detected. According to Autism Speaks, a diagnosis and intervention before the age of two maximize the progress of the child and ensure that they do not adopt harmful habits at an early age (Safa 2018). Another major challenge with mental disorders in general in

habits at an early age (Safa 2018). Another major challenge with mental disorders in general in Afghanistan is that oftentimes mothers are blamed for the condition of their child due to their bad parenting. This further delays the family from seeking professional help and opinions.

Cultural and religious stigmas cause problems for adults with mental disabilities and make it hard for these individuals to integrate into society (Trani and Bakhshi 2013). Studies show that in societies with social stigmas toward disabilities, individuals with such conditions are more prone to be poor and excluded from society (Braithwaite 2009). This can be in the form of social outcasting from their family or from society in general. It can cause intense feelings of shame and guilt for the

their family or from society in general. It can cause intense feelings of shame and guilt for the individual with the disability (Trani and Bakhshi 2013). People with disabilities also face difficulty finding employment or finding partners for marriage. These problems are especially severe when the disability is due to congenital factors with no cure rather than war-related physical or mental disabilities (Trani and Bakhshi 2013). A 2004 study on the perception of disability within the Afghan

(Trani and Bakhshi 2013). A 2004 study on the perception of disability within the Afghan community revealed a complex sentiment toward people with disabilities. War-related disabilities were viewed courageously as a noble sacrifice. This is not the sentiment with which congenital or nonwar-related disabilities are viewed (Bakhshi et al. 2006). Historically, Afghans have believed that individuals with epilepsy are possessed by djinn or evil spirits (Miles

also indicate that perceived eye contact modulates the activation of social brain network (defined as the cortical and subcortical structures specialized for the processing of social information, such as fusiform gyrus, superior temporal sulcus, medial prefrontal and orbitofrontal cortex, and amygdala). Sensitivity to the direction of another per-son’s eye gaze appears very early in typical development (Johnson et al. 2009). For example, newborns preferentially look longer at the faces with

(Johnson et al. 2009). For example, newborns preferentially look longer at the faces with direct gaze than those with averted gaze. Perceived eye contact also facilitates the pro-cessing of face identity and communicative facial expression during the first half year of life. A series of studies have demonstrated atypical processing of direct gaze in ASD (Senju and Johnson 2009a). For example, Senju, Yaguchi, Tojo, and Hasegawa (2003) used an oddball pro-cedure in which children were asked to

Yaguchi, Tojo, and Hasegawa (2003) used an oddball pro-cedure in which children were asked to detect a rare stimulus presented occasionally within the context of a frequently reoccurring stimulus. The rare stimuli were either faces with direct gaze or those with laterally averted eye gaze (i.e., faces with eyes looking leftward or rightward). The frequent stimuli were faces with eyes looking downward. Thirteen children with autism (mean age: 12 years) were compared with typically developing

Thirteen children with autism (mean age: 12 years) were compared with typically developing children of the same range of the age and nonverbal intelligence. Typically developing children showed the eye contact effect, that they were better at detecting direct gaze than averted gaze. By contrast, although children with autism are equally good at detecting averted gaze as typically developing children, they were less skilled at detecting faces with direct gaze, and they failed to show the eye

they were less skilled at detecting faces with direct gaze, and they failed to show the eye contact effect or the facil-itation of performance caused by the per-ceived direct gaze. Similarly, Pellicano and Macrae (2009) assessed whether direct gaze facil-itates the person categorization in children with autism (mean age: 10 years) and age- and IQ-matched typically developing children. Results revealed that typically developing chil-dren were faster to categorize faces by sex when they were with

that typically developing chil-dren were faster to categorize faces by sex when they were with direct gaze than with averted gaze. By contrast, although children with autism were as fast as typically developing children to catego-rize faces, their performance were unaffected by the gaze direction of the faces. These studies demonstrate that unlike typically developing indi-viduals, individuals with ASD do not show the eye contact effect or the facilitation of face and gaze processing caused by

ASD do not show the eye contact effect or the facilitation of face and gaze processing caused by the perceived direct gaze.

Several studies have recorded field potentials on the scalp with either EEG or MEG to assess the cortical response to direct and averted gazes in individuals with ASD, but results are mixed. Two studies reported that 3- to 7-year-old children (mean age: 5 years, Grice et al. 2005) as well as 7- to 12-year-old children (mean age: 10 years old, Kylliäinen et al. 2006) with ASD showed larger event-related potential (ERP) or event-related field (ERF) response to direct gaze than averted gaze, but

potential (ERP) or event-related field (ERF) response to direct gaze than averted gaze, but control children did not. By contrast, Senju, Tojo, Yaguchi, and Hasegawa (2005) reported that typically developing children (9- to 14-year-olds, mean age: 12 years) showed a larger ERP amplitude for direct than for averted gaze, but ERPs of children with ASD were not modu-lated by the presence of eye contact. Moreover, Elsabbagh et al. (2009) recorded EEG from high-risk infants as well as from low-risk

Moreover, Elsabbagh et al. (2009) recorded EEG from high-risk infants as well as from low-risk control infants while they watched faces with either direct or averted eye gaze and conducted ERP and time-frequency analysis (TFA). Results showed that a late ERP component (P400), which is known to relate to face processing, has a longer latency in response to direct gaze in high-risk infants. Secondly, TFA analysis revealed clearly distinguished and tem-porally sustained high-frequency oscillatory

TFA analysis revealed clearly distinguished and tem-porally sustained high-frequency oscillatory activity in the gamma-band frequency for direct gaze compared to averted gaze in control infants. In contrast, high-frequency oscillatory activity in gamma band for direct gaze compared to averted gaze in high-risk infants was delayed and less persistent. These results suggest that atypical eye contact processing in high-risk infants relates to the top-down modulation (as indicated by the slower

processing in high-risk infants relates to the top-down modulation (as indicated by the slower P400 latency) and task-relevant synchro-nization of brain activations (as indicated by the lack of differential gamma-band activation in response to eye contact).

Two studies have assessed skin conductance response (SCR), an index of physiological arousal, while individuals with ASD observe faces with either direct or averted eye gaze. However, the results are again mixed – one study found larger SCR in response to direct gaze in 10-year-old children with ASD (Kylliäinen and Hietanen 2006), but the other study did not repli-cate this findings in 12-year-old children (Joseph et al. 2008). Such inconsistency between physio-logical studies may result from

children (Joseph et al. 2008). Such inconsistency between physio-logical studies may result from the different age ranges of the participants and/or the different experimental tasks used for EEG/MEG/SCR recordings. To summarize, behavioral studies have consis-tently found that direct gaze facilitates cognitive processing of faces in typically developing chil-dren, but the face and gaze processing of individ-uals with ASD are unaffected by the presence of direct gaze (Senju and Johnson 2009a).

of individ-uals with ASD are unaffected by the presence of direct gaze (Senju and Johnson 2009a). Inconsis-tencies in the physiological studies make it diffi-cult to understand the neural basis of such atypical processing of direct gaze in individuals with ASD.

### Perception of Averted Gaze  Averted gaze, by contrast, signals that the person is looking at something in the environment. Thus, following another person’s gaze helps enable the perceiver to infer his or her attention, goal, and/or intention. In typical develop-ment, perceived averted gaze reflexively shifts the attention of the perceiver to the corresponding direction, which is often called gaze cueing effect (Frischen et al. 2007). The gaze cueing effect can be observed from 3 months of

gaze cueing effect (Frischen et al. 2007). The gaze cueing effect can be observed from 3 months of age, which corre-sponds to the age range when a rudimentary form of gaze following starts to appear. Individuals with ASD do not have an overall impairment in detecting the direction of others’ eye gaze. For example, Leekam, Baron-Cohen, Perrett, Milders, and Brown (1997) demonstrated that children with autism are as good as typically developing children at discerning the subtle dif-ferences in

with autism are as good as typically developing children at discerning the subtle dif-ferences in gaze direction. Moreover, majority of studies demonstrated that individuals with autism across the wide age range, from 2-year-old tod-dlers to adults, show apparently typical gaze cue-ing effect (Nation and Penny 2008). In these studies, participants are presented with a picture of a face with gaze averted to the left or right followed by a target stimuli presented either to the left or right of

averted to the left or right followed by a target stimuli presented either to the left or right of the face. Individuals with ASD, as well as typically developing individuals, are faster to detect the target when the face was looking at the location than when the face was looking at the opposite direction. These studies contrast with the impairment in gaze following behavior in individuals with ASD.

However, several studies also suggest the qual-itative differences in the gaze cueing effect between individuals with ASD and typically developing individuals. For example, Senju, Tojo, Dairoku, and Hasegawa (2004) compared the cueing effect of eye gaze and an arrowhead and found that children with autism do not show preferential sensitivity to eye gaze unlike typically developing children. Other studies (e.g., Ristic et al. 2005) used a schematic face, instead of a photographic image of a

studies (e.g., Ristic et al. 2005) used a schematic face, instead of a photographic image of a face, and found that only typically developing individuals show the gaze cueing effect in response to the schematic eyes. By contrast, individuals with ASD do not show gaze cueing effect in response to these stimuli. These studies suggest that the gaze cueing effect in individuals with ASD is not as robust as in typically developing individuals and perhaps is not processed in a functionally

not as robust as in typically developing individuals and perhaps is not processed in a functionally specialized cogni-tive mechanism. Individuals with ASD also show difficulties in inferring mentalistic and communicative signifi-cance of the eyes. For example, Baron-Cohen, Baldwin, and Crowson (1997) presented two novel objects to 7- to 12-year-old children with ASD as well as typically developing children matched by the mental age and verbally labelled one of these objects. Typically developing

children matched by the mental age and verbally labelled one of these objects. Typically developing chil-dren correctly associated the label with the object being looked at by the experimenter, even when the child was looking at the other object when the experimenter uttered the label. By contrast, chil-dren with autism tended to apply the label to objects in their own focus rather than the one the experimenter was looking at. An adult neuroim-aging study also demonstrated that individuals with

experimenter was looking at. An adult neuroim-aging study also demonstrated that individuals with ASD, unlike typically developing individ-uals, do not show differential cortical activation in response to the referential gaze (Pelphrey et al. 2005). To summarize, individuals with ASD have rel-atively good capacity to encode the direction of others’ eye gaze and reflexively shift their attention to the corresponding direction. How-ever, the gaze processing in individuals with ASD may not be as

to the corresponding direction. How-ever, the gaze processing in individuals with ASD may not be as robust or specialized as those of typically developing individuals, which may be related to the difficulty in using others’ eye gaze in the context of social learning.

### Future Directions  Further studies will be required to clarify the neurodevelopmental basis of eye gaze processing in ASD and its relationship with other clinical symptoms. Firstly, it is not clear why there are such inconsistencies between different neuro-physiological studies contrasting direct and averted gaze processing in ASD, as well as the different eye-tracking studies investigating the pattern of face scanning in ASD (Senju and Johnson 2009a). Thus, further studies will be

the pattern of face scanning in ASD (Senju and Johnson 2009a). Thus, further studies will be required to systematically control the background of participants (e.g., age, gender, and/or comor-bidity) as well as the properties of the stimuli and the tasks used (e.g., dynamic vs. static, active task vs. passive viewing, size and/or facial expression) to reveal the neurophysiological basis of direct gaze processing in ASD. Secondly, it will be important to investigate the relationship between

gaze processing in ASD. Secondly, it will be important to investigate the relationship between atypical cortical response to eye gaze in early infancy (e.g., Elsabbagh et al. 2009) and the later manifestation of clinical symptoms.

## Eye Movement Desensitization and Reprocessing (EMDR) Therapy in Children and Adults with Autism

### Definition  Eye movement desensitization and reprocessing (EMDR) therapy is a first-choice psychological treatment for posttraumatic stress disorder (PTSD) in the general population (World Health Organization 2013; ISTSS 2019). Although there is growing evidence that the scope of EMDR therapy is broader than treatment of full blown PTSD, little is known about the feasibility and potential effectiveness of EMDR in children and adults with autism spectrum disorder (ASD) who suffer from the

of EMDR in children and adults with autism spectrum disorder (ASD) who suffer from the consequences of exposure to adverse events and trauma. There are indications that these consequences often are overlooked and misinterpreted as autistic features and therefore remain untreated. This entry provides an overview of the current knowledge about the feasibility and effectiveness of EMDR therapy in individuals with ASD and trauma-related symptoms and its clinical and scientific implications.

EMDR therapy is a protocolized treatment, aimed to resolve symptoms resulting from disturbing and unprocessed life experiences. EMDR therapy is an evidence-based treatment for PTSD and may be supportive in the treatment of a wide variety of other mental health problems like anxiety disorders, depressive disorders, and obsessive-compulsive disorders (Shapiro 2018; Valiente-Gómez et al. 2017). EMDR therapy starts with history taking and a case conceptualization. Therapy continues with a short

therapy starts with history taking and a case conceptualization. Therapy continues with a short introduc-tion about how EMDR therapy works, shortly after which the client focusses on the traumatic memory. The therapist then asks the client to bring up the memory and to focus on the most distressing image, eliciting the dysfunctional neg-ative cognition (NC) of oneself in relation to the image, as well as the accompanying emotions and the body disturbance that go along with it. Next, the

as well as the accompanying emotions and the body disturbance that go along with it. Next, the therapist moves his or her fingers back and forth in front of the client’s eyes as fast as the client can follow. Repeatedly, the client is asked to report about emotional, cognitive, somatic, and/or imagistic experiences that arise. A new set of eye movements follows, and this procedure is repeated until the disturbance related to the memory reaches a SUD (Subjective Unit of Disturbances scale) of

the disturbance related to the memory reaches a SUD (Subjective Unit of Disturbances scale) of zero out of ten and an adaptive and positive statement about oneself (PC, Positive Cognition) is rated as fully believ-able on a VoC (Validity of Cognition) scale. The end of the session is dedicated to closing down the session positively and preparing the client for the interim in between sessions. A core feature of the procedure is carrying out a sufficient demanding bilateral working-memory-task

A core feature of the procedure is carrying out a sufficient demanding bilateral working-memory-task which is accomplished by the rapid eye movements (De Jongh et al. 2013).

### Historical Background  Children and adults with ASD are at elevated risk of experiencing a history of adverse events and revictimization (Hoover 2015; Kildahl et al. 2019). It has been argued that exposure to adverse events inhibits the ability to detect violations and exacerbates already impaired emotion regulation problems in youth with ASD (Kerns et al. 2015). These factors may negatively influence the ability to cope with future stressors and elevate the risk of revictimization. PTSD in

influence the ability to cope with future stressors and elevate the risk of revictimization. PTSD in children and adolescents with ASD co-occurs at a similar or greater rate compared to general population estimates (Rumball 2019). Individuals with ASD are known to have specific difficulties in resolving unprocessed life experiences, making them susceptible to psycho-social consequences of exposure to adverse events (e.g., Roberts et al. 2015). ASD can be characterized as a different way of

to adverse events (e.g., Roberts et al. 2015). ASD can be characterized as a different way of sense-making and as a problem with self-regulation, which is reflected in problems in social communication and interaction and restricted and repetitive pat-terns of behavior or interests. Adverse events that are considered to be mildly annoying for individ-uals without ASD may be perceived as distressing or even traumatic by individuals with ASD and vice versa (Taylor and Gotham 2016). Wood and Gadow

or even traumatic by individuals with ASD and vice versa (Taylor and Gotham 2016). Wood and Gadow (2010) hypothesized that ASD-related sensory hyper-reactivity to daily stimuli, social confusion, incomprehension, and rejection by others may lead to clinically signifi-cant anxiety, which affects resilience to cope with stressors.

Several authors reported a risk of overlooking a history of exposure to adverse events and symp-toms of PTSD in persons with ASD. There may be several reasons for this phenomenon. First, the different sense-making may prevent them from recognizing risky circumstances and communicating about their experiences (Kerns et al. 2015). The risk of overlooking is even stron-ger in case of persons with ASD and an intellectual disability (Kildahl et al. 2019). Second, symptoms attributed to ASD might in

and an intellectual disability (Kildahl et al. 2019). Second, symptoms attributed to ASD might in fact be stress reactions to adverse events or trauma, a phenomenon termed diagnostic overshadowing. For example, hyperarousal and numbing (symptoms of PTSD) overlap with ASD related hyper- and hypo-reactivity to sensory stimuli. Feelings of detachment of others – a symptom of PTSD – partly overlap with deficits in social-emotional reciprocity. A reduced ability to mentalize and recognize emotions is

deficits in social-emotional reciprocity. A reduced ability to mentalize and recognize emotions is seen in both people with PTSD and in people with ASD. Also, there is an overlap between the ASD-related symp-toms of perseveration and rumination and the cri-terion negative cognitions and mood due to PTSD (DSM-5 2013). Especially people with severe PTSD symptoms not fulfilling PTSD DSM-5 criteria (e.g., because they do not meet DSM-5 criterion A for PTSD) are at risk to be excluded for trauma

(e.g., because they do not meet DSM-5 criterion A for PTSD) are at risk to be excluded for trauma treatment. Hence, both trauma and trauma-related symptoms can be overlooked or overshadowed by autistic features and therefore remain untreated.

### Current Knowledge  Little is known about the feasibility and potential effectiveness of EMDR therapy in individuals with ASD and trauma-related symptoms. This may partly be caused by the problem of over-looking and overshadowing as mentioned above. Another impeding factor may be that individuals with ASD are often excluded from participating in research (Spinazzola et al. 2005). This entry gives a short overview of what is known about EMDR in autistic children and adults with and without

gives a short overview of what is known about EMDR in autistic children and adults with and without intellectual disabilities.

### EMDR Therapy in Children with ASD  Preliminary findings from a few case reports sug-gest EMDR therapy for PTSD to be feasible and potentially effective for children with ASD (e.g., Ipci et al. 2017) also in case of comorbid intellec-tual disabilities (Mevissen et al. 2011). Controlled studies are lacking.

### EMDR Therapy in Adults with ASD  Several case reports have been published describ-ing the treatment of trauma with EMDR therapy in adults with ASD (Kosatka and Ona 2014) and in adults with ASD and intellectual disabilities (Barol and Seubert 2010; Mevissen et al. 2011), with promising results. Until now, one controlled study has been published describing the feasibility and effective-ness of EMDR therapy for PTSD symptoms in adults with ASD (Lobregt-van Buuren et al. 2019). The study

of EMDR therapy for PTSD symptoms in adults with ASD (Lobregt-van Buuren et al. 2019). The study investigated whether EMDR is a feasible therapy for adults with ASD and a history of adverse events and whether it is associ-ated with reductions in symptoms of PTSD, psy-chological distress, and autism. The study had a non-randomized add-on design consisting of three phases, in which participants were their own controls. In the first phase participants received treatment as usual (TAU) during 6–8

their own controls. In the first phase participants received treatment as usual (TAU) during 6–8 weeks while on the waiting list for EMDR therapy. The second phase consisted of up to 8 sessions EMDR in addition to TAU. The third phase comprised of a follow-up period with the TAU only condition. TAU consisted of the most common treatments for adults with ASD aimed at coping with ASD, psychological distress, and comorbid problems. TAU included pharmacotherapy, psychoeducation, supportive

distress, and comorbid problems. TAU included pharmacotherapy, psychoeducation, supportive counseling, job coaching, support with housekeeping, and so-called case management. Results showed a significant reduction of symptoms of post-traumatic stress (measured with the Impact of Event Scale-Revised: d¼1.16), psychological distress (measured with the Brief Symptom Inventory: d¼0.93), and autistic features (Social Responsiveness Scale-Adult version: d¼0.39). Moreover, the participants experienced

(Social Responsiveness Scale-Adult version: d¼0.39). Moreover, the participants experienced a signifi-cantly lower level of daily life impairment related to the traumatic events following EMDR therapy (thermometer card of the Adapted Anxiety Disor-ders Inventory Scale for children (ADIS-C) sec-tion PTSD: d¼1.81). The positive results were maintained at follow-up. The results suggest EMDR therapy added to TAU to be a feasible and potentially effective treatment for individuals with ASD who suffer

to TAU to be a feasible and potentially effective treatment for individuals with ASD who suffer from the conse-quences of exposure to distressing events. It should be noted that the study was based upon a small sample of participants (n¼21).

The significant reduction of autistic features concerning social motivation and communication following EMDR therapy, and at follow-up, albeit with a small effect size, is remarkable. A possible explanation for this finding might be that the clinical manifestation of autistic symptoms decreases when individuals with ASD experience less trauma-related stress and psychological distress, such as somatization, depression, and obsessive-compulsive symptoms. Hence, it is conceivable that

such as somatization, depression, and obsessive-compulsive symptoms. Hence, it is conceivable that trauma-related symptoms are a moderator for the severity of ASD symptoms, such that exposure to trauma and other adverse events exacerbate autistic core features like deficits in social-emotional reciprocity (e.g., reduced sharing of interests, emotions, or affect; Wood and Gadow 2010). Another possible explanation for the observed reduction of autistic features in the study is that symptoms

possible explanation for the observed reduction of autistic features in the study is that symptoms ascribed to phenotypic features of ASD may in fact be symptoms of PTSD, the phenomenon termed diagnostic overshadowing. For example, hyperarousal as a consequence of exposure to trauma may be interpreted as an autistic feature similar to hyper-reactivity to sensory stimuli. Also, trauma-related avoidance of social situations can be confused with autistic features similar to problems in social

avoidance of social situations can be confused with autistic features similar to problems in social communication. In other words, symptoms of PTSD can be masked by symptoms of autism, therefore symptoms of PTSD, previously seen as features of ASD, might have declined as a result of EMDR therapy.

### Future Directions  #### Clinical Implications  The following practical recommendations based on current knowledge can be made for future clinical practice.
*   Awareness of the impact of adverse events and trauma in individuals with ASD is important to prevent undertreatment.

*   There is a high prevalence of being bullied in individuals with ASD (Hoover 2015; Maïano et al. 2016). Exposure to bullying is associated with severe psychiatric outcomes in adulthood. Bullying does not comply with the (i.e., A-criterion) definition of trauma in the PTSD section of DSM-5. When there is no formal PTSD-classification, there is an extra risk of undertreatment of the trauma-related symp-toms. Disturbing memories of being bullied (e.g., social situations where participants felt

symp-toms. Disturbing memories of being bullied (e.g., social situations where participants felt excluded and intimidated) can be reprocessed with EMDR therapy.

*   Trauma history and associated trauma-related symptoms should be routinely assessed in individuals with ASD who present to clinical services, taking into account the social communi-cation impairments. What is not explicitly asked for often remains undisclosed, because of inabil-ity to spontaneously share relevant information. This issue can be addressed by making use of the concrete, visualized, and structured way in which potentially traumatic events and trauma-related symptoms are probed

and structured way in which potentially traumatic events and trauma-related symptoms are probed by the Diagnostic Interview Trauma and Stressors-Intellectual Disability (DITS-ID; Mevissen et al. 2016, 2017, 2018, in press), such that also in children and adults with ASD unprocessed memories can be identified. The DITS-ID is the latest DSM-5 based version of the Adapted Anxiety Disorders Inventory Scale for children (ADIS-C) section PTSD. All documents (only in Dutch language) belonging to the

Scale for children (ADIS-C) section PTSD. All documents (only in Dutch language) belonging to the DITS are available and can be downloaded for free.

*   Trauma-related symptoms and PTSD in indi-viduals with ASD can be treated successfully with EMDR therapy, taking into account aspects of their specific information pro-cessing. The EMDR procedure for children can be used, when the language of the EMDR protocol for adults is too abstract for people with ASD (Dutch version, De Roos et al. 2014). Individuals with ASD seem to need more time to become familiar with the therapist and the procedures and to fill out question-naires. In case of

to become familiar with the therapist and the procedures and to fill out question-naires. In case of obstacles when administering EMDR therapy to individuals with ASD, these preliminary recommendations are based on well-established and evidence-based practices for working with this population.

*   Based on clinical observations, EMDR therapy seems difficult to perform in individuals with ASD who have problems with activating the traumatic memories because of fear of affects, in combination with severe problems in self- and emotional regulation, a cognitive, rigid, and extremely negative mindset. These individuals are often exposed to prolonged and repeated trauma such as childhood sexual abuse and domestic violence (complex PTSD) and/or are exposed to prolonged and repeated overload

abuse and domestic violence (complex PTSD) and/or are exposed to prolonged and repeated overload and relational mismatches between the needs of the individual and the possibilities of the environment. The iatrogenic effects of inadequate treatments due to delayed diagnos-tics or inadequate facilities should not be under-estimated in these subgroups.

*   EMDR embedded in treatment as usual seems appropriate and necessary given the comorbid psychiatric conditions and/or structural prob-lems at home, school, or work in individuals with ASD.

#### Scientific Implications  Controlled trials with sufficient power to detect differences are greatly needed to confirm the present findings and to test the hypothesis that EMDR therapy is more effective than treatment as usual in reducing trauma- and stressor-related symptoms. Investigation and experimentation into other evidence-based trauma treatments like cognitive behavioral therapy with a trauma focus (CBT-T), narrative exposure therapy for individ-uals with ASD, and trauma-related

a trauma focus (CBT-T), narrative exposure therapy for individ-uals with ASD, and trauma-related symptoms are strongly recommended. More generally, the issue as to how PTSD and other trauma-related disor-ders manifest or may be masked by symptoms of ASD is an intriguing one which should be explored in further research.

## Eyeblink Reflexes  ### Synonyms  *   Corneal reflex *   Startle response  ### Definition  The first and most reliable component of the star-tle reflex in humans. The blink reflex is an invol-untary blinking of the eyelids elicited when the cornea is stimulated by touch, bright light, loud sounds, or other peripheral stimuli. The evolution-ary purpose of this involuntary response is believed to be a survival-related function, to pro-tect the eyes from potentially harmful stimuli (i.e., threat).

a survival-related function, to pro-tect the eyes from potentially harmful stimuli (i.e., threat). When a stimulus is presented to the cornea of the eye, sensory information is carried to the trigeminal nucleus and relayed to the accessory abducens and abducens motor nuclei, initiating a motor response. The eyeblink consists of a rapid contraction of the orbicularis oculi muscle surrounding the eye; this is the most sensitive component of the blink. Strength of the response can be measured by

eye; this is the most sensitive component of the blink. Strength of the response can be measured by electromyographic activity (EMG) of the orbicularis muscle during the eye-blink, or blink magnitude. Because EMG is quan-tifiable, it is the behavioral variable often used in startle response experiments designed to investi-gate neurological indices of fear and anxiety (i.e., amygdala activation).

## Eye-Tracking  ### Definition  Eye-tracking is a technique in which one or more of a subject’s eyes are tracked with the intent of inferring, in a moment-by-moment fashion, what the individual is attending to in his or her visual world.

### Historical Background  Eye-tracking has had a long history in psychological research and vision science. Some of the earliest reported work using eye-tracking appeared in the late 1800s and early 1900s, focus-ing primarily on understanding and optimizing visual processes during reading (e.g., the work of Huey, 1898, 1910). Later work, by Guy Buswell (1935), Alfred Yarbus (1967), and others, would use eye-tracking to study more natural visual scanning processes during the viewing of complex

use eye-tracking to study more natural visual scanning processes during the viewing of complex scenes such as those found in paintings or photographs. From these early experiments, it was noted that typical individuals, both young and old, when presented visually with scenes with people, and unless given instructions to the con-trary, would spend much of their time looking at the people portrayed. Furthermore, it was noted that given a face to view, subjects would largely attend to the eyes and

Furthermore, it was noted that given a face to view, subjects would largely attend to the eyes and mouth of the face, despite the fact that these static stimuli never changed. Yarbus noted, in his treatise on eye movements: “The observer’s attention is frequently drawn to elements which do not give important information but which, in his opinion, may do so.” This early work, which advanced the primary of social infor-mation processing in natural viewing for typically developing individuals, set

of social infor-mation processing in natural viewing for typically developing individuals, set the stage for modern investigations of the visual strategies employed by individuals with autism spectrum disorders (ASD).

### Current Knowledge  The use of eye-tracking for understanding neuro-psychiatric conditions and special populations in general is attractive for a number of reasons. First, at its essence, eye-tracking is a method for seeing how others see, providing a robust, quantitative measure of where someone is looking. Since where someone is looking is highly correlated to where that person’s attention is deployed, eye-tracking can be used to understand temporally changing cognitive processes as they

is deployed, eye-tracking can be used to understand temporally changing cognitive processes as they unfold (with caveats). Second, eye-tracking is today a relatively noninvasive and easily tolerated exper-imental technology. As compared to the original systems of the early nineteenth century, which were often so uncomfortable that the eye had to be anesthetized with cocaine, modern desktop-mounted video oculography eye-tracking systems can obtain precise measurements of the eye without ever

video oculography eye-tracking systems can obtain precise measurements of the eye without ever touching any part of the participant. Third, the oculomotor system is early maturing and highly preserved neurophysiological control system. This means that eye-tracking can be an applicable and appropriate technique across the vast cogni-tive, behavioral, and physiological heterogeneity found in many neuropsychiatric conditions. The earliest published work using eye-tracking to study individuals with

conditions. The earliest published work using eye-tracking to study individuals with ASD appeared in 2002 (Klin et al. 2002; Pelphrey et al. 2002; van der Geest et al. 2002a; van der Geest et al. 2002b). The general pattern of this work suggested that in many cases, the visual scanning strategies of indi-viduals with ASD are significantly different than that of controls. These initial reports found, for example, that older adolescents and adults with ASD tended to look more at the mouth and less

for example, that older adolescents and adults with ASD tended to look more at the mouth and less at the eyes in comparison to control individuals. They also highlighted relationships between com-municative ability and scanning patterns, with the somewhat surprising finding that individuals with ASD who looked more at the mouth were actually more communicatively capable than those who looked less.

Additional studies have largely confirmed the atypical nature of visual scanning strategies in individuals with ASD, especially under conditions where choices in attentional selection must be made between social and nonsocial stim-uli. Results of several studies show, for instance, decreased attention toward social actors, people in general, and faces, and increased attention toward nonsocial background elements of scenes (e.g., Jones et al. 2008; Klin et al. 2002; Pierce et al. 2011; Riby and

elements of scenes (e.g., Jones et al. 2008; Klin et al. 2002; Pierce et al. 2011; Riby and Hancock 2009; Shic et al. 2011). Other studies also highlight decreased sensitivity in individuals with ASD to communicative and social aspects of interactions, such as gaze cues and shared activities (Freeth et al. 2009; Riby and Doherty 2011; Shic et al. 2011). Finally, eye-tracking studies have related inefficient social information–gathering strategies to poor perfor-mance in face recognition tasks in

social information–gathering strategies to poor perfor-mance in face recognition tasks in both adults (Spezio et al. 2007) and toddlers and children with ASD (Chawarska and Shic, 2009). Taken together, these studies provide evidence for atyp-ical visual exploratory behaviors in individuals with ASD and promote the use of eye-tracking technology in efforts toward understanding the mechanisms underlying atypically developing social skills in individuals with ASD. However, it is important to note

atypically developing social skills in individuals with ASD. However, it is important to note that the use of eye-tracking in studying ASDs is a developing and emerging field. While originally there was a great deal of enthusiasm regarding atypical distri-butions of attention toward specific elements of the face (e.g., proportions of mouth and eye scan-ning), recent reports have highlighted the complex interrelationships between cognitive, social, and behavioral phenotypes and visual exploratory

interrelationships between cognitive, social, and behavioral phenotypes and visual exploratory behavior (Chawarska and Shic 2009; Norbury et al. 2009). Indeed, several studies did not repli-cate atypical patterns of looking at faces or social scenes, even as early as 2002 (van der Geest et al. 2002a, b). The reasons for these disagreements are currently active areas of exploration. However, there are likely several factors involved, such as heterogeneity of sample populations, variety of

there are likely several factors involved, such as heterogeneity of sample populations, variety of experimental paradigms and contexts, and incon-sistencies across research sites in use of pre-processing methodology and analytical techniques. Nevertheless, eye-tracking has been and continues to be a powerful methodology for understanding the nature of ASD; as more research using eye-tracking is conducted, its application will likely extend further toward ques-tions regarding the heterogeneity

conducted, its application will likely extend further toward ques-tions regarding the heterogeneity of behavioral and visual exploratory activities in ASD.

### Types of Eye-Trackers  There are several types of eye-tracking technolo-gies still in widespread use (Duchowski 2007). However, recently, psychological and behavioral studies of individuals with ASD and other neuro-psychiatric conditions have largely begun to rely exclusively on the use of remote video oculography (VOG) methods. In modern video oculography, a video camera or multiple video cameras are positioned so as to be able to obtain a clear image of the participant’s eye. These

cameras are positioned so as to be able to obtain a clear image of the participant’s eye. These cameras, typically linked up to either specialized hardware or a computer, employ sophisticated computational algorithms in order to extract from the video the position of the participant’s pupil(s). In the most common methodology, infra-red filters are used to remove contaminating light sources which otherwise complicate signal analy-sis extraction of the pupil location. In these infra-red systems,

otherwise complicate signal analy-sis extraction of the pupil location. In these infra-red systems, additional infrared light sources, which are largely invisible to the human eye, are used in order to generate “glints” or corneal reflec-tions which serve as a reference coordinate system for the pupil that is more invariant to participant motion. Additionally, the eye and face of the participants can be lit by on-camera-axis lighting or off-camera-axis lighting. On-camera-axis light-ing

can be lit by on-camera-axis lighting or off-camera-axis lighting. On-camera-axis light-ing generates a form of infrared video oculography called “bright-pupil” eye-tracking. In bright-pupil eye-tracking, illumination of the eye causes a “red-eye effect” (similar to what occurs when a flash is reflected off someone’s eye in a camera photograph). This makes the pupil appear bright. In off-camera-axis lighting, the pupil remains dark because infrared light is not reflected, resulting in a “dark

lighting, the pupil remains dark because infrared light is not reflected, resulting in a “dark pupil.” Though some manufacturers suggest one form of lighting is superior for certain individuals (e.g., for those with light blue eyes as compared to those with dark brown eyes), there have been no independent scientific studies showing one method is actually superior in practical applications and modern use.

Another form of eye-tracking which has been in many ways superseded by video oculography methods, at least in behavioral studies of individ-uals with neuropsychiatric disorders, is electrooc-ulography (EOG). Electrooculography uses conductive electrodes placed nasally and tempo-rally to the eye, together with a reference elec-trode, in order to measure the potential difference between the front of the eye and the back of the eye (the corneofundal potential). This method of eye-tracking

front of the eye and the back of the eye (the corneofundal potential). This method of eye-tracking typically is noisier than commercial video oculography systems, and the head must remain relatively immobilized, as compared to video oculography techniques which can accom-modate relatively larger amounts of head move-ments. However, EOG systems are relatively inexpensive compared to VOG eye-tracking systems, making their use a viable alter-native in situations where precision is not at a premium

systems, making their use a viable alter-native in situations where precision is not at a premium and participants are very compliant to instructions and immobilization. Finally, a form of eye-tracking used primarily in primate and animal research employs scleral coils. With scleral coils, a conducting ring is placed directly on the sclera of the eye and an enclosing alternating magnetic field induced around the head of the participant. As the eye changes position, voltages generated within the

around the head of the participant. As the eye changes position, voltages generated within the coil give the position of the eye, giving extremely precise recordings of eye position. The main drawback of this technique is the physical discom-fort associated with inserting the coil directly into the eye and the risk of corneal abrasion. Still, recent work has identified the lead from the coil to the measuring device as a major source of discomfort for scleral coils, and strides have been made

the measuring device as a major source of discomfort for scleral coils, and strides have been made using wireless scleral coils which may make the technology more usable for fine-grained detection of eye movements in the future (Roberts et al. 2008).

### Mechanics of Eye Movements and Common Eye-Tracking Outcome Variables  Primary classifications of eye movements include saccades, fixations, and smooth pursuit. Saccades, a term coined by French psychologist Louis Javal in 1879, are rapid, ballistic movements of the eye. Research has shown that awareness of the visual world is suppressed during saccades, an effect neatly summarized by Dodge (1900). Dodge’s observation was that when an individual stands in front of a mirror, looking at

(1900). Dodge’s observation was that when an individual stands in front of a mirror, looking at different positions on his or her own eyes, that individual does not detect any movement of the eyes. However, an observer standing immediately to the side of the person in the mirror will see the eyes moving rapidly. This effect, known as saccadic suppres-sion, is associated with decreased conscious awareness of the visual world during saccades. Fixations are the complement of saccades and represent

of the visual world during saccades. Fixations are the complement of saccades and represent periods in which the pupil is focused relatively stably and steadily on a particular loca-tion. By contrast, smooth pursuits are indicated by slower, sweeping motions of the eye and are found when the eye is used employed to visually track a moving target. Interestingly, smooth pur-suits cannot be elicited voluntarily in the absence of a target and require a slow-moving target to manifest.

Fixation/saccade identification algorithms have been advanced in order to segregate saccades from fixations in eye-tracking data. However, it is unclear if these algorithms are effective in draw-ing clear distinctions between saccades and fixa-tions at modern eye-tracking speeds (60 Hz) and resolutions (Shic et al. 2008a, b). Nevertheless, these fixation identification algorithms are in widespread use and are supported by most eye-tracking manufacturers. By comparison, smooth pursuit recognition,

and are supported by most eye-tracking manufacturers. By comparison, smooth pursuit recognition, which would affect the inter-pretation of studies employing dynamic stimuli, is currently not a standard analytical technique. Perhaps the most common technique used in analysis of eye-tracking data is region-of-interest (ROI) analysis. In ROI analysis, the scene pre-sented to the participant is divided into a series of not necessarily (but usually) nonoverlapping regions, and the amount of time

into a series of not necessarily (but usually) nonoverlapping regions, and the amount of time spent by the participant looking at each of these regions is calculated. As studies of natural activities have shown that people tend to be looking for informa-tion they need, it is inferred that more examined areas correspond to areas found by observers to be more important. Typically, for comparability pur-poses, looking times are expressed as a proportion of the trial time. Some researchers choose

pur-poses, looking times are expressed as a proportion of the trial time. Some researchers choose to exclude from analyses eye-tracking data acquired during saccades due to diminished awareness of the scene by the participant, but others choose to incorporate all data into proportion data and/or looking time reports. Additional measures employed in eye-tracking research are extensive (Jacob and Karn 2003), and there exists a large body of research on sophisti-cated techniques for processing

Karn 2003), and there exists a large body of research on sophisti-cated techniques for processing eye-tracking data. While many of these techniques are theoreti-cally and conceptually interesting, it is also important to note that, in many cases, the relationships between derived eye-tracking vari-ables and physiological or behavioral constructs is unclear. A notable exception is the detection of blinks. The inhibition of blinks has recently been shown to correspond to decreased attribution of

blinks. The inhibition of blinks has recently been shown to correspond to decreased attribution of salience to social scenes in toddlers with ASD (Shultz et al. 2011). Concerted and rigorous explorations of the space of possible eye-tracking measures may thus more firmly ground our under-standing of outcome eye-tracking measures, from psychological, neurophysiological, and behav-ioral perspectives, in the years to come.

### Limitations of Eye-Tracking  Interpretations of the results of eye-tracking experiments often involve assumptions regarding the concurrent relationship between the position of eye and the allocation of attention. However, attention and eye movements are not always coupled; indeed, research suggests that the move-ment of attention toward a particular point in the world precedes an eye movement toward that location by 100–120 ms. In addition, attention can be moved covertly, i.e., without an

toward that location by 100–120 ms. In addition, attention can be moved covertly, i.e., without an explicit, overt eye movement. Research has shown, however, that when a movement of the eye is made, it must be preceded by focal attention to that location. Thus, the occurrence of an eye movement suggests that attention has already been deployed to the target of that eye movement; on the other hand, when the eye is relatively still, standard interpretations of eye-tracking data rely on an

hand, when the eye is relatively still, standard interpretations of eye-tracking data rely on an assumption that the point of fixation is the same as the point of attention. For practical pur-poses, this is often the case (Duchowski 2003; Holmqvist et al. 2011; Kowler 1990).

### Future Directions  Keith Rayner, one of the pioneers of eye-tracking research, especially in studies of reading, notes that there have been four main eras of eye-tracking research (Rayner 2009). In the first era (early 1900s), many of the basic properties about eye movements were discovered. In the second era (1930s to 1950s), experimental work in eye-tracking research took a behaviorist position, clas-sifying and quantifying, in context, the myriad behaviors comprising eye movements. In

clas-sifying and quantifying, in context, the myriad behaviors comprising eye movements. In the third era (1970s to 1990s), the cognitivist revolu-tion brought new perspectives for delving deeper into the mechanisms and cognitive processes underlying eye movements. Rayner notes that we are now in the fourth era of eye-tracking research, one where quantifiable and predictive models of eye movements, indexing underlying cognitive substrates, can be developed. While Rayner’s summary mainly refers

indexing underlying cognitive substrates, can be developed. While Rayner’s summary mainly refers to studies of reading, the same classification of eras can be applied to eye-tracking research in social visual information processing, with the under-standing that this field lags research in reading by about a decade. Currently, there is a great deal of interest in using eye-tracking technology for understanding autism, and much of this effort is aimed at understanding the specific individual

for understanding autism, and much of this effort is aimed at understanding the specific individual behavioral and cognitive characteristics that affect visual scanning of social information in autism. Once this heterogeneity of behavior can be decoded, it is hoped that eye-tracking research in autism will also enter into its fourth era, where the accurate models of eye movements can help us both understand individual variability as well as predict those forms of intervention that will be most

understand individual variability as well as predict those forms of intervention that will be most efficacious.

The fourth era of eye-tracking research also corresponds with the proliferation and technolog-ical development of eye-tracking technology as a whole. In many ways, eye-tracking is now appearing as an almost requisite adjunct method-ology for social information processing para-digms that directly target underlying neural substrates, such as functional magnetic resonance imaging and electroencephalography. Combining these multiple sources of information will provide a more complete picture of

Combining these multiple sources of information will provide a more complete picture of the multifaceted com-plexities in ASDs. Given the wealth of informa-tion, an increased focus on computational and statistical approaches toward integrating and uni-fying eye-tracking data with other sources of information will be critical to future research. Finally, while atypical scanning of social scenes in individuals with ASD has been found by several research groups employing eye-tracking, there is

in individuals with ASD has been found by several research groups employing eye-tracking, there is still much work left to do in terms of pinpointing specific behavioral markers of ASD. It is yet unknown whether atypical gaze patterns in ASD are a secondary manifestation of social perceptual disadvantages and to what extent the compounding effects of the atypical experience reflected by these gaze patterns dimin-ish prototypical social development. Current and future work with eye-tracking will

patterns dimin-ish prototypical social development. Current and future work with eye-tracking will thus continue to isolate autism-specific developmental pro-cesses and deepen our appreciation of the roles of typical and atypical gaze patterns in shaping the behavioral phenotype of individuals with ASD.

## Face Perception  ### Definition  Facial perception refers to the ability to rapidly recognize and understand information from faces. The ability to perceive faces and to use that information to guide and direct behavior plays a critical role in interpreting and forming representations from the social world and in the acquisition and understanding of reciprocal social interaction. Early facial recognition research suggests that humans innately attend to faces and are able to rapidly

facial recognition research suggests that humans innately attend to faces and are able to rapidly recognize faces remarkably early in life (Goren et al. 1975). Within 9 min after birth, infants turn their head to a 90° angle to preferentially attend to faces or face-like images. At 42 min after birth, infants can imitate facial expressions; and by 2 days old, infants can recognize the face of their mother. One-month-old infants show greater pupillary dilation to faces than to nonsocial stimuli

mother. One-month-old infants show greater pupillary dilation to faces than to nonsocial stimuli suggesting greater interest and arousal in infants when looking at faces. By the end of the first year of life, infants are able to respond to directional gaze, emotional expression, and facial gestures. These early infant preferential face-directed behaviors mark the beginning of a highly protracted development in which repertoires for the face processing system become more sophisticated over time.

in which repertoires for the face processing system become more sophisticated over time. The examination of facial perception in typical and atypical development, such as in autism spectrum disorders (ASD), has elucidated face perception processes across behav-ioral, anatomical, and neurophysiological domains and revealed differences in functioning in individuals with ASD and typical development in face perception.

### Historical Background  Research with children with ASD has consistently revealed deficits in facial perception surfacing within the first 3 years of life. Children with ASD show impairments in social behaviors related to the perception and processing of infor-mation from faces. These impairments include reduced eye contact, joint attention, and social orienting, deficits in the imitation of faces and in face recognition, and attenuated responses to emotional displays of others (Dawson et al.

and in face recognition, and attenuated responses to emotional displays of others (Dawson et al. 2005). The retrospective examination of joint atten-tion and gaze monitoring of toddlers through home videos of first birthday parties has provided insight into facial perception in ASD. In novel and uncertain situations, typically developing young children will seek affective cues from others’ faces. Given that a child’s first birthday can be a highly social, yet novel event, the setting provides the

that a child’s first birthday can be a highly social, yet novel event, the setting provides the opportunity for a range of observable social behavior. Osterling and Dawson collected video-tapes of 1st year birthday parties from children who were later diagnosed with ASD and from children with typical development. The tapes were rated by coders blind to the child’s subse-quent diagnostic status. The authors found that the children later diagnosed with ASD looked at and attended to faces

The authors found that the children later diagnosed with ASD looked at and attended to faces significantly less than the typi-cally developing children. The authors deter-mined that the single most critical factor in recognizing early signs of ASD was a failure to look at others and attend to faces in a typical manner, at or before 12 months old (1994).

### Current Knowledge  The dynamic processes related to facial percep-tion can be examined from behavioral, neuroan-atomical, and neurophysiological perspectives. Much of our understanding of facial perception has been derived from clinical work and research with individuals with ASD. These impressions suggest that individuals with autism, compared to typical peers, perform worse on face discrim-ination, recognition, and memory tasks when behaviorally assessed. Additionally, individuals with

recognition, and memory tasks when behaviorally assessed. Additionally, individuals with ASD display atypical development and ana-tomical activation of the brain structures involved in face processing and exhibit delayed and differential neurophysiological responses to faces.

#### Behavioral Perspectives on Face Perception  Very early in life, typically developing individuals show an attentional preference for faces and are equipped for the specialization of face processing. These specialized abilities involve recognizing upright faces better than inverted faces and interpreting complex interactions such as direc-tion of gaze, emotional expressions, and facial gestures. Into middle childhood, the specializa-tion for facial perception grows in complexity. Typically,

Into middle childhood, the specializa-tion for facial perception grows in complexity. Typically, individuals show better memory for faces than objects. They also derive meaningful social-emotional information from faces through preferential attention toward the eyes and perceive faces as a holistic unit rather than isolating indi-vidual facial features (Joseph and Tanaka 2003).

In contrast, individuals with ASD attend to inverted faces for the same amount of time as upright faces and recognize inverted faces better than typical individuals by focusing on isolated features of the face rather than the face as a whole (van der Geest et al. 2002). Further, when viewing faces, individuals with ASD fixate on the mouth region rather than the eyes. Accordingly, they exhibit better performance memory for the lower portion of the face than the upper portion of the face but show

performance memory for the lower portion of the face than the upper portion of the face but show a decrease in attention to the entire internal region of the face. As a result, individuals with ASD perform in the below average range on tasks of overall face memory ability. Further, indi-viduals with ASD show impairments in the ability to use information from faces to guide behavior, such as failing to monitor a gaze shift and follow a gaze to share attention. Studies of facial discrimination

to monitor a gaze shift and follow a gaze to share attention. Studies of facial discrimination and recogni-tion using eye tracking suggest that individuals with ASD employ atypical strategies during facial perception tasks. First, individuals with ASD attend to other objects in the environment more often than the face. For example, a pioneering study using eye tracking found that when watching a videotape of the movie Who’s Afraid of Virginia Woolf, individuals with ASD attended two times more

videotape of the movie Who’s Afraid of Virginia Woolf, individuals with ASD attended two times more to the actors’ mouth, bodies, and objects in the scenes than to the actors’ eyes (Klin et al. 2002). This suggests that individuals with ASD do not seek social information and cues from naturalistic exchanges in the way that typical indi-viduals seek social information. Subsequent stud-ies have shown that individuals with ASD utilize atypical spatial distribution fixation strategies exemplified by

that individuals with ASD utilize atypical spatial distribution fixation strategies exemplified by fixating to, or avoiding specific regions of the face, focusing on the mouth, rather than the typical direction toward the eyes.

A second atypical face perception strategy that individuals with ASD appear to use involves pro-cessing faces utilizing a piecemeal (i.e., feature-based) strategy (Chawarska and Shic 2009). In contrast, typical individuals employ the piecemeal processing strategy when looking at objects but not faces. Typical individuals attend to faces holistically by utilizing a complex-looking strat-egy called configural processing (Dawson et al. 2005). Configural processing is the perception and encoding of

configural processing (Dawson et al. 2005). Configural processing is the perception and encoding of faces as a single holistic unit by incorporating the major features (i.e., eyes, nose, mouth), in respect to other features throughout the face. To explore the limitations of the configural strategy employed by the typical population, researchers alter the configuration of faces by inverting and partially obscuring the images. Typical individuals are adept at distinguishing similarities between faces

obscuring the images. Typical individuals are adept at distinguishing similarities between faces that are upright; how-ever, when the face is inverted, it is more difficult to discern facial feature differences. Inversion appears to alter the perception of the face by challenging the relational facial features (i.e., eye, nose, mouth), which contests the configural processing looking strategy producing what is called the inversion effect. While inverting faces results in the inversion effect,

what is called the inversion effect. While inverting faces results in the inversion effect, altering a face by forcing one to focus on individual facial features results in the decomposition effect. Even though typical individuals are adept at perceiving faces, once the face is altered from its original composi-tion (e.g., inverted or presented in sections), the accuracy in which the face is identified is chal-lenged. By challenging the configural processing strategy in these two ways, typical

is chal-lenged. By challenging the configural processing strategy in these two ways, typical individuals have to abandon a configural processing strategy when looking at faces and adopt a piecemeal strategy as if they were looking at an object. This concept provides support that face percep-tion is a highly specialized and sensitive pro-cessing system, which when challenged, forces individuals to compensate using differential pro-cessing strategies and neuroanatomical mecha-nisms that are not

compensate using differential pro-cessing strategies and neuroanatomical mecha-nisms that are not specialized for face perception tasks.

From studies exploring the configural pro-cessing strategy, the decomposition effect and the inversion effect, researchers have found that typical individuals attend to inverted faces for longer lengths of time, are better at recognizing parts of the face when presented in the context of the entire face, and are better at recognition of the eyes compared to the mouth than their peers with ASD (van der Geest et al. 2002). When presented with the inversion face perception task, individ-uals with

der Geest et al. 2002). When presented with the inversion face perception task, individ-uals with autism spend an equal amount of time looking at upright and inverted faces. This is similar to the way typical individuals attend to upright and inverted objects. By employing the object specific, piecemeal processing strategy, individuals with ASD are better at perceiving specific features of the face or partially exposed sections of the face with emphasis on local detail rather than global detail.

or partially exposed sections of the face with emphasis on local detail rather than global detail. In fact, individuals with ASD are in some cases better at feature-based matching, especially around the mouth, because they are not inhibited by the implementation of decomposition effect. These behavioral-based face perception studies suggest that typically developing individuals use the configural processing strategy to perceive faces and the piecemeal processing to perceive objects while

processing strategy to perceive faces and the piecemeal processing to perceive objects while individuals with ASD appear to apply the piecemeal strategy to process both faces and objects. The benefits of configural pro-cessing strategies are reflected in better perfor-mance on face discrimination and recognition tasks and better memory for faces relative to objects for typical individuals. In contrast, chil-dren with ASD perform equally to typical peers and in some cases better on nonface memory

chil-dren with ASD perform equally to typical peers and in some cases better on nonface memory recognition tasks that include objects such as buildings, animals, houses, and bicycles (Blair et al. 2002).

#### Neuroanatomical Perspectives on Face Perception  Much of our understanding of the neuroanatomi-cal structures related to face perception has been driven by research with individuals with impair-ments in face perception. Studies of the brain in individuals with prosopagnosia, a disorder char-acterized by intact object recognition ability, but impairment in the ability to recognize faces, pro-vide a model for face perception that can be applied to ASD. Neuroanatomical findings in individuals

a model for face perception that can be applied to ASD. Neuroanatomical findings in individuals with prosopagnosia, who exhibit behavioral face perception impairments similar to those found in ASD, indicate damage to partic-ular cortical regions, such as the fusiform gyrus, indicating a critical role in face perception for this neural region (De Renzi et al. 1994). By utilizing functional magnetic resonance imaging (fMRI), structural magnetic resonance imaging (MRI), and positron-emission

resonance imaging (fMRI), structural magnetic resonance imaging (MRI), and positron-emission tomography (PET), neuroimaging research has provided fur-ther evidence that occipitotemporal cortical and other neural structures are functionally abnormal in individuals with ASD during facial perception. The regions identified as playing a primary role in face processing include the fusiform gyrus, the posterior superior temporal sulcus, and the amygdala. This dynamic human face processing system that

superior temporal sulcus, and the amygdala. This dynamic human face processing system that is linked to the structural encoding of facial features, processing emotional expres-sions, and interpreting biological movement is critical to understanding the fundamental neural circuitry of the “social brain” (Pelphrey et al. 2007).

##### Fusiform Gyrus  Research over the last decade has verified a region of the fusiform gyrus that activates more strongly to faces than any other visual stimuli and appears to be specialized for face processing and facial expression discrimination. The fusiform face area (FFA), located in the medial-lateral region of the fusiform gyrus, responds almost twice as strongly to faces than wide varieties of nonface objects (Kanwisher 2000). However, additional research adds complexity to the role

of nonface objects (Kanwisher 2000). However, additional research adds complexity to the role of the FFA region. After finding that the FFA is activated while viewing objects that fall in an individual’s area of expertise (e.g., car experts display FFA activation when viewing images of automobiles), Gauthier, Tarr, Anderson, and Skudlarski pro-posed that the FFA region is not only responsible for face perception but is responsible for the medi-ation of specific visual expertise. Gauthier and

for face perception but is responsible for the medi-ation of specific visual expertise. Gauthier and colleagues supported this conclusion by showing that training a group of college students to identify computer generated 3-D objects (called Greebles) results in an increase of activity of the FFA (1999). Rather than increased activity in the fusiform gyrus when looking at faces as seen in typical development, neuroimaging findings suggest that individuals with ASD display reduced activation of

development, neuroimaging findings suggest that individuals with ASD display reduced activation of the fusiform gyrus while looking at faces (Schultz et al. 2000). Further, individuals with ASD exhibit an increase in activation in the infe-rior temporal gyri, a surrounding anatomical region specialized for object recognition. While for typical individuals, viewing objects of expertise, such as faces, results in FFA activation, individuals with ASD show FFA activation only when looking at images

results in FFA activation, individuals with ASD show FFA activation only when looking at images of their specialized inter-est. While the fusiform gyrus is an area linked to facial perception in typical individuals, for indi-viduals with ASD, this “social brain region” fails to activate to faces in the same manner.

##### Amygdala  While there is strong research to support the FFA role in the perception of faces, the amygdala plays a significant role in detecting emotional expres-sions on faces. The amygdala is a fast-responding structure that plays a critical role in notifying other brain regions of emotional arousal through a mediated reward system. This structure quickly and reliably reacts to salient environmental stim-uli, especially fear, and plays a role in assigning significance and constructing

environmental stim-uli, especially fear, and plays a role in assigning significance and constructing social judgments, such as inferring personality characteristics from pictures of the face or facial features (LeDoux 1996). The allure of the amygdala in ASD research was initially recognized in postmortem cases of individuals with ASD who appeared to have lim-ited dendritic tree development resulting in an amygdala that was small and densely packed com-pared to typical individuals (Bauman and

in an amygdala that was small and densely packed com-pared to typical individuals (Bauman and Kemper 1985). Adolphs found that individuals with ASD demonstrated similar impairments to those with focal lesions to limbic structures, including the amygdala. While individuals with ASD are able to form representations of faces and understand basic knowledge of emotions, they are unable to link the perception of faces to social judgments that are often revealed by facial expressions. Neuroimaging

perception of faces to social judgments that are often revealed by facial expressions. Neuroimaging studies of individuals with ASD have reported hypoactivation of the amygdala when viewing images of emotional and mental states of another individual. For example, Pelphrey and colleagues demonstrated that when emotional faces were presented naturalistically through a dynamic video display, all three com-ponents of the broader social brain – the amyg-dala, the superior temporal sulcus, and the

com-ponents of the broader social brain – the amyg-dala, the superior temporal sulcus, and the fusiform gyrus – were hypoactive (2007). A study examining the perception of emotionally expressive faces in individuals with amygdala and hippocampal lesions found that there was a strong correlation between the extent of amygdala lesions and hypoactivation of the FFA, suggesting that the amygdala plays a direct role on the FFA when interpreting emotionally expressive face (Vuilleumier et al. 2004).

##### Superior Temporal Sulcus (STS)  The STS region of the brain is responsible for the detection and processing of biological motion (Pelphrey et al. 2007). In synchrony with the amygdala and fusiform gyrus, this neural network is important for linking structural encoding of facial features and emotions to biological motion. Perception of biological motion is thought to underlie impairments in attention and imitation, skills that are strongly linked to language and social development. Since

attention and imitation, skills that are strongly linked to language and social development. Since past research examined the face pro-cessing system through the display of emotional expressions using still image stimuli, Pelphrey et al. (2007) were interested in how presenting dynamic facial expressions affects the face pro-cessing system. They found that individuals with ASD display reduced activation in the STS, fusi-form, and amygdala when faces contain dynamic information, such as

activation in the STS, fusi-form, and amygdala when faces contain dynamic information, such as movement, relative to static snapshots of the same emotional expressive face. These results were specific to the social brain and were not observed outside of the human face processing system (i.e., STS, fusiform gyrus, and amygdala). The STS also plays a role in comprehending intentions and detecting “errors” in social situa-tions (Pelphrey et al. 2007). This region modu-lates tasks involving the

“errors” in social situa-tions (Pelphrey et al. 2007). This region modu-lates tasks involving the attribution of intention in the context of dynamic social situations. Dur-ing situations in which an individual’s actions do not fulfill the expectation (e.g., a character in a story is not looking in the direction that the viewer would think he/she should), there was an increase in blood flow to the STS in a typical observer. However, for individuals with ASD, there was reduced activity in the STS

STS in a typical observer. However, for individuals with ASD, there was reduced activity in the STS region. The lack of observed activity in the STS during attribution tasks in ASD provides further evidence that the STS region plays a strong role in the social dys-function in ASD.

#### Neurophysiological Perspectives on Facial Perception  By utilizing neurophysiological measures such as event-related potentials (ERPs), scientific studies have provided insight into the neuropsychological processes underlying face perception and face perception impairment in ASD. While fMRI stud-ies have allowed researchers to efficiently inves-tigate abnormal regional brain activity during facial performance tasks, electroencephalogram (EEG) and event-related potentials (ERPs) have allowed

performance tasks, electroencephalogram (EEG) and event-related potentials (ERPs) have allowed researchers to examine the temporal char-acteristics and strength of neural activity by assessing oscillatory activity in response to view-ing faces. Unlike fMRIs, which cannot determine the timing of neuronal firing, EEG/ERPs are able to monitor the timing of the summation of a col-lection of neuronal postsynaptic potentials firing at the resolution of milliseconds. Most studies utilizing EEG data

postsynaptic potentials firing at the resolution of milliseconds. Most studies utilizing EEG data concentrate on the amplitude, scalp topography, and latency. Amplitude is con-sidered a representation of the amount of neuronal resources recruited for a particular process. Scalp topography distribution differences are thought to represent the location of the originally generated neuronal activity, and the timing of information processing speed is represented through the wave-like display of

and the timing of information processing speed is represented through the wave-like display of troughs and peaks, known as latency. Electrophysiology studies are particularly salient in face processing research because of the discovery of a face-sensitive component that occurs with a negative slope at approximately 170 milliseconds poststimuli exposure. The N170 represents one stage in a series of stages of face processing; the P100, a positive going peak around 100 milliseconds, reflects neural

stages of face processing; the P100, a positive going peak around 100 milliseconds, reflects neural activity in basic visual processing; the N170 reflects struc-tural encoding of the face; and the N250 reflects higher order recognition such as affect or identity recognition. The N170 is recorded over the pos-terior temporal lobe and is greater in the right hemisphere than the left hemisphere. The N170 responds quicker to face and eye stimuli alone, rather than objects or inverted faces. Slight

N170 responds quicker to face and eye stimuli alone, rather than objects or inverted faces. Slight changes in face composition or inversion alter the latency and amplitude of this component. In typical children, the N170 undergoes a prolonged period of development and does not reach full maturation until late adolescence. Between 4 and 15 years of age, the precursor to the N170, iden-tified as the prN170, is measured from the same electrode configuration as the N170 in adults but is more positive

prN170, is measured from the same electrode configuration as the N170 in adults but is more positive (does not extend beyond the baseline) than the fully maturated N170 compo-nent in adults. The prN170 in children ages 3–6 years is shown to have a faster response to faces. Similar to adults, this component is shown to have preferential responses to faces than objects.

McPartland, Dawson, Webb, and Panagiotides documented the first report of an altered N170 pattern in adolescents and adults with ASD (2004). Individuals with ASD showed a slower latency when looking at faces than furniture and failed to show the face inversion effect. Addition-ally, researchers observed a slower speed of infor-mation processing which disrupts early structural encoding. These differences in the timing of cor-tical processing suggest that individuals with ASD have abnormal

differences in the timing of cor-tical processing suggest that individuals with ASD have abnormal circuitry or delayed neural processes that modulate the face processing system. Children with ASD also show disruptions to this physiological measure of face processing. They demonstrate longer prN170 responses to faces than objects. By the age of 6, compared to typically developing peers who continue to show faster responses to faces over objects, children with ASD show no latency differences to

to show faster responses to faces over objects, children with ASD show no latency differences to faces versus objects (Webb et al. 2006). In addition, research indicates that children with ASD display structural encoding of faces that is disrupted and slowed. While typically developing children exhibit a faster prN170 response to faces than objects, individuals with ASD exhibit a slower prN170 response to faces than objects. Differential activation patterns have been observed using ERP studies

to faces than objects. Differential activation patterns have been observed using ERP studies in typical children comparing familiar and unfamiliar stimuli (i.e., caregivers to strangers, familiar objects to unfa-miliar objects) as early as 6 months. This suggests early preferential neurological responses to famil-iar over unfamiliar faces and objects (de Haan and Nelson 1999). Typically developing infants and young children display ERP differences when viewing familiar and unfamiliar faces and

infants and young children display ERP differences when viewing familiar and unfamiliar faces and objects at the P400 component recorded from posterior electrodes. Children with ASD, however, fail to show a differential P400 component when looking at familiar versus unfamiliar faces. Instead, children with ASD display an enhance-ment in the P400 component when looking at favorite objects versus unfamiliar objects. These results provide evidence that children with ASD have specific impairment in

objects. These results provide evidence that children with ASD have specific impairment in processing faces, but not objects. Children with ASD also show abnormal elec-trophysiological responses when viewing emo-tional expressions. Compared to typical peers, children with ASD show a slower and more pos-itive N300 wave in response to fear and exhibit abnormal scalp topography. This slower informa-tion processing for faces in the N300 for emo-tional stimuli is associated with greater severity in

processing for faces in the N300 for emo-tional stimuli is associated with greater severity in social domains such as joint attention and social orienting (Dawson et al. 2004). Neurophysiological studies in early childhood provide insight into the structural and neurolog-ical mechanisms that are involved in the devel-opment of face processing. Face processing impairments examined at the neurophysiological level provide insight into social brain functioning and the face processing system in

level provide insight into social brain functioning and the face processing system in individuals with ASD from infancy and throughout development.

### Future Directions  Faces hold special significance and convey valu-able social information early in life. Face percep-tion provides a foundation for the development of social cognitive skills such as sharing attention and understanding emotions. Given the prominent role of face perception in social cognition, the study of ASDs has provided insight into the behavioral, neuroanatomical, and neurophysiological components of face perception. Behavioral studies of face perception in indi-viduals

components of face perception. Behavioral studies of face perception in indi-viduals with ASD have yielded insight into visual scanning, face processing strategies, and the role of expertise of processing information. Imaging studies have identified structures related to the processing of faces, such as the fusiform gyrus, superior temporal sulcus, and amygdala, and dem-onstrated that the structures of the “social brain system” involved in face perception appear to be functioning differently in

of the “social brain system” involved in face perception appear to be functioning differently in ASD. Neurophysiological studies have elucidated face-specific brain waves and revealed temporal delays in the processing of faces in ASD. The ability to process and gather information from facial expressions is crucial for successful social interactions. This unique ability allows humans to understand affective cues in uncertain situations, such as situations that may be danger-ous and important for

affective cues in uncertain situations, such as situations that may be danger-ous and important for survival, and to accurately read the emotions of another individual. This abil-ity provides attentional and directive focus through gaze monitoring of others and provides a catalyst to overtly and covertly mimic the facial expressions and affective states of others, such as states that offer the opportunity for bonding or shared reciprocal experience (Chawarska and Shic 2009). While face

the opportunity for bonding or shared reciprocal experience (Chawarska and Shic 2009). While face perception provides immediate insight and interpretation of the social world, over time, and development, it is clear that early developing face processing skills set the foundation for the maintenance of exchanges and social relationships.

## Face Processing in Autism: Active Avoidance of the Eyes Versus Passive Indifference

### Definition  A person’s face is the source of their identity, a reflection of their internal emotions, and the means by which they communicate thoughts, feel-ings, and intentions to others. Most people are “expert” face perceivers – able to identify a famil-iar face, interpret a facial expression, and follow a person’s gaze, instantaneously, effortlessly, and without conscious forethought. However, many individuals on the autism spectrum experience difficulties with face processing and

However, many individuals on the autism spectrum experience difficulties with face processing and struggle to understand the perceptual and social cues con-veyed by the human face.

### Current Knowledge  If individuals on the autism spectrum have diffi-culties recognizing faces and understanding the emotional and social cues in a face, this could contribute to problems in the navigation of every-day interpersonal interactions. In this article, we will discuss the face processing strategies employed by people on autism spectrum and their problems with recognizing face identities and expressions, gaze following, and eye contact. We reason that impairments in face processing

and expressions, gaze following, and eye contact. We reason that impairments in face processing abilities have cascading effects on the social and emotional functioning of people on the autism spectrum that further exacerbate their difficulties with social communication and interaction. We propose that the pattern of face impairment in autism is best explained by a failure to attend to the eye information in a face. To account for this eye deficit, we will compare two accounts: the “Eye

eye information in a face. To account for this eye deficit, we will compare two accounts: the “Eye Avoidance” hypothesis, in which it is pro-posed that people on the autism spectrum actively avoid the eye region, and the “Eye Indifference” hypothesis, which claims that people on the autism spectrum do not show preferential atten-tion to the socially-relevant information conveyed by the eyes.

#### Deficits in Facial Identity  The human face is the physical manifestation of one’s identity and the primary source of how people individuate one another as conspecifics, each with a distinct personality and personal his-tory. Although it is not a defining characteristic of the disorder, many people on the autism spectrum are impaired in their ability to perceive and rec-ognize facial identity. Research has shown that persons on the autism spectrum have difficulties with the perceptual

Research has shown that persons on the autism spectrum have difficulties with the perceptual discrimination of different facial identities (Behrmann et al. 2006; Tantam et al. 1989; Wallace et al. 2008), are impaired in their recognition of familiar faces (Boucher and Lewis 1992), and have problems with learning to recognize unfamiliar faces (Blair et al. 2002; Bou-cher and Lewis 1992; Gepner et al. 1996; Hauck et al. 1998; Klin et al. 1999). These impairments do not reflect a breakdown in

et al. 1996; Hauck et al. 1998; Klin et al. 1999). These impairments do not reflect a breakdown in general perceptual processing, because individuals on the autism spectrum perform equivalently or even sometimes better than control participants on tasks that involve the perception and recognition of nonface objects, such as cars and houses (Wallace et al. 2008; Wolf et al. 2008; Weigelt et al. 2013). However, not all individuals on the autism spectrum have difficulties with face recognition. In

However, not all individuals on the autism spectrum have difficulties with face recognition. In their extensive review of the literature, Weigelt et al. (2012) found that about half of the reviewed studies (N ¼ 46) supported differential impaired face processing in autism, whereas the other half (N ¼ 44) showed no difference between ASD and non-ASD control groups. Nevertheless, in the studies demonstrating face deficits, systematic breakdowns in face processing were identified. Face deficits in

face deficits, systematic breakdowns in face processing were identified. Face deficits in autism are most pronounced when the task involves either immediate or long-term memory for faces. Furthermore, when iden-tifying unfamiliar faces, children on the autism spectrum process eye information differently than typically developing children. On a part/whole task intended to measure holistic strategies, children on the autism spectrum relied less on the eye features than neurotypical children (Wolf et

children on the autism spectrum relied less on the eye features than neurotypical children (Wolf et al. 2008). On a series of face matching tasks, participants with autism performed more poorly than neurotypically developing children and children diagnosed with Williams Syndrome on items that tested the upper eye region of the face, but performed on par with comparison groups on items that tested the lower mouth region (Riby et al. 2009). One implication of the converging research evidence is

the lower mouth region (Riby et al. 2009). One implication of the converging research evidence is that individuals on the autism spectrum might not have a basic impairment in face recognition, but that they employ face recognition strategies that are differ-ent from neurotypical individuals.

#### Deficits in Emotion  Facial expressions play a key role in our everyday interactions with others because they are our moment-to-moment manifestations of our internal emotions or the emotions that we wish to project to others (Ekman and Friesen 1971). Therefore, success in social interactions relies on the capacity to recognize and interpret facial emotions in a social context. In typically developing children, the ability to discriminate basic facial expressions, such as anger, fear,

developing children, the ability to discriminate basic facial expressions, such as anger, fear, sadness, happiness, and surprise, appears by approximately 4 months (Walker-Andrews 1998) and between 8 and 10 months, infants begin to use the emotional expressions of parents or caregivers to form their responses to events in their environment (Camras and Shutter 2010). If individuals on the autism spectrum struggle in their ability to perceive and interpret facial expressions, this would

autism spectrum struggle in their ability to perceive and interpret facial expressions, this would invariably lead to difficulties in everyday social exchanges. Although there is a clear connection between the accurate recognition of facial expressions and everyday social competence, there is inconsistent empirical evidence concerning whether individ-uals with autism are differentially impaired in their ability to perceive and interpret facial emotions. On the one hand, there are studies

in their ability to perceive and interpret facial emotions. On the one hand, there are studies pro-viding results consistent with impaired emotion perception and recognition in autism populations (Corbett et al. 2009; Davies et al. 1994; Loveland et al. 2008; Tantam et al. 1989; Tanaka et al. 2012). Some studies show that individuals on autism spectrum perform worse than control par-ticipants on tasks requiring the labeling of primary basic emotions, such as anger, disgust, and sad-ness (Bölte

tasks requiring the labeling of primary basic emotions, such as anger, disgust, and sad-ness (Bölte and Poustka 2003; Boraston et al. 2007). On the other hand, many studies report no differences between typical and autism popu-lation participants in their perception and recog-nition of facial expressions (Baron-Cohen et al. 1997; Castelli 2005; Jones et al. 2011; Lacroix et al. 2009; Ozonoff et al. 1990; Spezio et al. 2007). However, when the expression studies were combined in a recent

et al. 1990; Spezio et al. 2007). However, when the expression studies were combined in a recent meta-analysis of 48 papers, Uljarevic and Hamilton (2013) found that people on the autism spectrum performed below control participants, with a calculated mean effect size of 0.80, and an effect size of 0.41 after correction for publication bias. Relative to neurotypical groups, recognition of happiness was only marginally impaired in autism. Individ-uals on the autism spectrum performed most poorly

was only marginally impaired in autism. Individ-uals on the autism spectrum performed most poorly on their recognition of fear, and the difference between their recognition of fear and happiness was marginally reliable. The relative sparing of the happy expression and the selective impairment of the fear expression is informative, because whereas the perceptual cues for happi-ness are centered on the mouth region (i.e., upturned smile), fear requires attention to cues contained in the upper eye

the mouth region (i.e., upturned smile), fear requires attention to cues contained in the upper eye region (i.e., widened eye and arched eyebrows) (Dimberg and Petterson 2000; Dimberg and Thunberg 1998; Smith et al. 2005). Thus, evidence from the iden-tity and expression recognition studies suggests that individuals on the autism spectrum might be predisposed to ignore information in the upper eye region.

#### Cognitive Strategies in Face Processing and Autism  What is the source of the face processing deficits in autism? A likely candidate is the failure to process information in the eye region of the face. The eye region is a perceptually rich area of the face that provides critical cues for recognizing identity (Schyns et al. 2002; Vinette et al. 2004) and expression (Calder and Jansen 2007; Smith et al. 2005) If individuals on the autism spectrum fail to attend to eye information, it follows

et al. 2005) If individuals on the autism spectrum fail to attend to eye information, it follows that they would be impaired in face identity and expression recognition tasks and have difficulty interpreting social cues in their daily lives. Eye tracking is a powerful technique for revealing cognitive strategies and it provides insights into the perceptual strategies guiding face processing in autism (Black et al. 2017; Boraston and Blakemore 2007). When a photo-graph of a face is presented to

(Black et al. 2017; Boraston and Blakemore 2007). When a photo-graph of a face is presented to neurotypical par-ticipants, the majority of their looking behaviors (70–80%) are devoted to the eye region of the face (Vinette et al. 2004; Walker-Smith et al. 1977). In contrast, when adults on the autism spectrum look at a face, they look less at the eye, nose, and mouth features of the face and more at the external features (hair, chin, clothing) (Pelphrey et al. 2002). Critically, when

and more at the external features (hair, chin, clothing) (Pelphrey et al. 2002). Critically, when individuals with autism do attend to the facial features, their gaze patterns are directed more to the mouth area; they spend less time inspecting the eyes (Dalton et al. 2005; Pelphrey et al. 2002; Spezio et al. 2007). In the real world, faces are not static objects, but are dynamic entities that constantly move and change in reaction to social events in the environ-ment. To capture dynamic social

move and change in reaction to social events in the environ-ment. To capture dynamic social situations, eye movements were recorded while individuals with autism and control participants viewed a film depicting two actors engaged in a highly emo-tional conversation. Whereas neurotypicals spent the majority of time fixated on the eyes of the actors, individuals on the autism spectrum spent more time looking at the mouths of the actors and unrelated objects in the scene and less time on actors’

looking at the mouths of the actors and unrelated objects in the scene and less time on actors’ eyes (Klin et al. 2002). In a replication study, Speer et al. (2007) also found that individ-uals on the autism spectrum spent significantly less time looking at the eyes than did their typically developing peers. Interestingly, a link was found between social competence as measured by the Social Rating Scale (SRS) and scanning behaviors, such that as social competence decreased, the participant’s

Scale (SRS) and scanning behaviors, such that as social competence decreased, the participant’s fixation time on the eyes also decreased. The authors suggested that the amount of time an individual spends fixating on others’ eyes in social interactions may reflect the degree to which they are able to interpret social information as conveyed through facial cues. Developmentally, eye neglect in autism emerges early and provides a reliable predictor of social impairment for toddlers who are later

emerges early and provides a reliable predictor of social impairment for toddlers who are later diagnosed with autism (Jones et al. 2008; Klin and Jones 2008). However, the precise age at which these eye contact differences first emerge is unclear. A prospective study using dynamic, but relatively still, face stimuli suggests that infants with autism could be less likely to look at the eyes as early as 3 months of age (Rutherford et al. 2015), but another prospective study using dynamic videos

as 3 months of age (Rutherford et al. 2015), but another prospective study using dynamic videos of an individual interacting with viewers found that infants later diagnosed with autism showed normative patterns of eye looking at 2 months of age, with fixation on the eyes declining gradually over subsequent observations (Jones and Klin 2013).

#### Eye Avoidance or Eye Indifference?  There are two accounts addressing why individ-uals on the autism spectrum might not show a preference for the eyes. The “Eye Avoidance” hypothesis asserts that people on the autism spec-trum actively divert their attention away from the eyes as a strategy to reduce and regulate social interactions. In contrast, the “Eye Indifference” hypothesis claims that individuals on the autism spectrum are insensitive to the social information conveyed by the eyes,

individuals on the autism spectrum are insensitive to the social information conveyed by the eyes, which therefore are per-ceived to be a region of the face that is not partic-ularly informative, engaging, or adaptively useful. Whereas the “Eye Avoidance” account regards the eyes as aversive and as having a negative valence, the “Eye Indifference” account regards the eyes as a nonthreatening and neutral stimulus. In this section, we will discuss the research relevant to the “Eye Avoidance” and

neutral stimulus. In this section, we will discuss the research relevant to the “Eye Avoidance” and “Eye Indifference” accounts and provide an explanation that attempts to reconcile these perspectives.

##### Eye Avoidance Hypothesis  Despite the importance of the eyes for recognition of identity and expression, the eyes present the most threatening area of the face to many individ-uals on the autism spectrum. Eye contact conveys a social message of approach and can be interpreted as an invitation for social engagement and intimacy (Kleinke 1986). In everyday face-to-face encounters, social communication is initiated and regulated through the “language of our eyes.” Therefore, for individuals

is initiated and regulated through the “language of our eyes.” Therefore, for individuals with autism, avoiding eye contact may be an adaptive strategy for deflecting, discouraging, or coping with stressful social interactions. Indeed, people with autism anecdotally comment that looking into another person’s eyes is an unpleasant, even painful expe-rience (Robison 2007). These anecdotal observa-tions have been validated by the self-reports of older children and adults indicating the threat and

have been validated by the self-reports of older children and adults indicating the threat and anxiety associated with looking at the eyes (Corden et al. 2008; Tottenham et al. 2014). Physiological measures provide an indirect measure of emotional reactivity. It is well established that increased skin conduction is a measure of increased emotional arousal, and therefore, serves as a good biomarker for examin-ing a possible link between eye gaze and emotion in autism (Bradley et al. 2001).

for examin-ing a possible link between eye gaze and emotion in autism (Bradley et al. 2001). Consistent with an Eye Avoidance account, children with autism exhibit a higher skin reactivity to direct gaze faces than averted gaze faces, suggesting the direct eye contact is perceived as more threatening by participants. In contrast, the skin reactivity of neurotypical children does not change across direct and averted gaze conditions (Kylliäinen and Hietanen 2006). In an important ecological

direct and averted gaze conditions (Kylliäinen and Hietanen 2006). In an important ecological extension of this finding, Kaartinen et al. (2012) measured the skin conductance response of par-ticipants on the autism spectrum and neurotypical control participants using live models. Partici-pants viewed the models displaying either an eyes closed, gaze averted, or direct gaze pose through a liquid crystal shutter. Although no group differences were found in skin reactivity between the participants

shutter. Although no group differences were found in skin reactivity between the participants on the autism spectrum and neurotypical participants, the magnitude of arousal for children on the autism spectrum was reliably associated with their social skill abilities (e.g., language, social communication skills, non-verbal play) in the direct gaze condition, but not in the eyes closed or averted gaze conditions, suggesting that engaging in eye contact promotes social competence. Gaze may

gaze conditions, suggesting that engaging in eye contact promotes social competence. Gaze may interfere with face recognition ability in autism, insofar as skin reac-tivity to direct gaze faces was negatively corre-lated with face recognition performance; that is, high skin reactivity to direct gaze faces was cor-related with poor recognition (Joseph et al. 2008). Although researchers have not always found a reliable link between skin reactivity and eye gaze in autism (Louwerse et al. 2013),

always found a reliable link between skin reactivity and eye gaze in autism (Louwerse et al. 2013), null find-ings might be related to variations in stimulus type (static, videos, live models), task demands, age, and level of functioning of the participants. As a whole, the bulk of the skin conductance evidence indicates that individuals on the autism spectrum are more emotionally aroused when they look at the eyes of faces and this response is accentuated when the eyes of the faces are looking

look at the eyes of faces and this response is accentuated when the eyes of the faces are looking back at them.

At the neuroanatomical level, a network of cor-tical and subcortical brain structures that includes the fusiform gyrus, the amygdala, and the superior temporal sulcus is central to social and emotional processing of faces. Whereas the fusiform gyrus is selectively sensitive to faces compared to nonface objects (Kanwisher et al. 1997; Puce et al. 1995) and to familiar faces compared to unfamiliar faces (Lehmann et al. 2004; Rotshtein et al. 2005), the amygdala is sensitive to emotional

faces (Lehmann et al. 2004; Rotshtein et al. 2005), the amygdala is sensitive to emotional information in a face (Kawashima et al. 1999; Morris et al. 2002; Whalen et al. 2004). In autism, activation of amyg-dala is strongly and positively correlated with the time spent fixating on the eyes, relative to neurotypical participants (Dalton et al. 2005; Hadjikhani et al. 2004; Hadjikhani et al. 2017; Kliemann et al. 2012). Although they are not pre-disposed to look at the eyes, when individuals on

Kliemann et al. 2012). Although they are not pre-disposed to look at the eyes, when individuals on the autism spectrum are cued to the eye region, they demonstrate greater bilateral amygdala activation than neurotypical individuals (Hadjikhani et al. 2004). Tottenham et al. (2014) showed that amyg-dala activity could be increased through an exper-imental manipulation to the eyes and that those participants with autism who made the fewest nat-ural eye movements toward the eyes exhibited the

participants with autism who made the fewest nat-ural eye movements toward the eyes exhibited the highest amygdala response when their gaze was experimentally driven toward the eyes. The researchers hypothesized that those individuals on the autism spectrum who found direct gaze to be the most aversive may have modulated their amygdala-mediated arousal by averting their gaze away from direct eye contact. For many people on the autism spectrum, looking into the eyes of another person is a

eye contact. For many people on the autism spectrum, looking into the eyes of another person is a threat-ening experience, one that provokes feelings of anxiety and trepidation. As the foregoing research indicates, subjective feelings of discomfort are manifested in physiological responses that include heightened skin conductance and increased amygdala brain activity and these responses are accentuated by direct eye contact. According to the Eye Avoidance hypothesis, choosing not to look at

by direct eye contact. According to the Eye Avoidance hypothesis, choosing not to look at someone’s eyes is an adaptive strategy that allows people on the autism spectrum to regulate their social interactions and manage potential feelings of discomfort that these encounters might elicit.

##### Gaze Indifference Account  In contrast to the Eye Avoidance hypothesis, the Gaze Indifference hypothesis maintains that indi-viduals on the autism spectrum are insensitive to social cues and, consequently, are indifferent to the role that the eyes play in social communication. Whereas the Eye Avoidance hypothesis assumes an awareness on the part of people on the autism spectrum to the potential social threat of the eyes, the Gaze Indifference hypothesis claims that they have no awareness

social threat of the eyes, the Gaze Indifference hypothesis claims that they have no awareness of the social meaning or significance of eye informa-tion. According to this account, insensitivity to eye gaze is not specific to face processing, but reflects a general lack of interest in the social behaviors of others. Consistent with the Gaze Indifference account, neuroimaging studies have demonstrated that individuals on the autism spectrum show either hypoactivation or nonselective activation in

that individuals on the autism spectrum show either hypoactivation or nonselective activation in the amygdala to social stimuli (Pelphrey et al. 2005), to faces (Pierce et al. 2001), and to the eyes (Pelphrey et al. 2005). Thus, in contrast to previously discussed findings (Dalton et al. 2005; Tottenham et al. 2014), these studies indicate that for people on the autism spectrum, the affec-tive valence of a stimulus has little effect on the brain structures that are most closely associated with

of a stimulus has little effect on the brain structures that are most closely associated with emotional processing.

To support the Gaze Indifference hypothesis, Moriuchi et al. (2017) monitored the eye move-ments of 2-year-old toddlers on the autism spec-trum while they watched a video of an actress speaking into the camera. When cued to the eyes of the actress, the 2-year-olds with autism did not shift their gaze away from the eyes as predicted by the Eye Avoidance account. Unlike the tod-dlers from the control group, the eye movements of toddlers on the autism spectrum were unaf-fected by the social cues

group, the eye movements of toddlers on the autism spectrum were unaf-fected by the social cues of the actress, such as when she made eye contact and spoke directly into the camera. Hence, while the toddlers on the autism spectrum did not find the actress’ eyes particularly noxious or aversive, they did not respond to the social cues conveyed through her eyes. The results are consistent with a Gaze Indifference account in which the 2-year-olds on the autism spectrum displayed a passive

a Gaze Indifference account in which the 2-year-olds on the autism spectrum displayed a passive insensi-tivity to the social cues conveyed by the eyes of others. Although the foregoing results are consistent with the Gaze Indifference interpretation, the findings are not necessary incompatible with the Eye Avoidance account. Moriuchi and colleagues speculated that whether an individual on the autism spectrum responds passively or aversively to the eyes of others might depend on factors related

spectrum responds passively or aversively to the eyes of others might depend on factors related to the age and social and cognitive devel-opment of the child. Previous eye gaze reports of atypical amygdala activation (Dalton et al. 2005; Tottenham et al. 2014), heightened anxiety (Corden et al. 2008), and atypical skin reactivity (Kaartinen et al. 2012; Kylliäinen and Hietanen 2006) have examined the responses in older children and adults on the autism spectrum, in contrast to the eye-tracking

the responses in older children and adults on the autism spectrum, in contrast to the eye-tracking study by Moriuchi et al., which was conducted with young, 2-year-old toddlers. If children on the autism spectrum learn that attending to the eyes is associated with a potential social threat, then the eye contact-social threat connection would require time, experience, and awareness. The frequency of anxiety symptoms in autism increases with age (van Steensel et al. 2011) and is moderated by

of anxiety symptoms in autism increases with age (van Steensel et al. 2011) and is moderated by cognitive functioning (White et al. 2009). It is not surprising then that the eye contact-social threat contingency is not fully established at 2 years of age. One model proposes that people on the autism spectrum could develop anxiety as a result of stress-ful experiences, including the stressful experience of navigating unpredictable social interactions (Wood and Gadow 2010). Hence, Eye Avoidance

of navigating unpredictable social interactions (Wood and Gadow 2010). Hence, Eye Avoidance behaviors would not be expected to appear until later childhood and early adulthood, when the con-nection between social anxiety and eye threat is more firmly established.

### Future Directions  #### Summary  In this article, we discussed the face processing abilities and strategies of individuals on the autism spectrum. Although impairments in the recognition of face identities and expressions are not defining characteristics of the autism spec-trum, the converging evidence indicates that many individuals on the autism spectrum have difficulty in these areas. Because their recognition abilities for nonface objects are on par with or superior to those of

Because their recognition abilities for nonface objects are on par with or superior to those of neurotypical individuals, the deficits cannot be attributed to low-level or per-ceptual visual impairments but are selective to face processing. Cognitive and eye-tracking experiments indicate that in contrast to neurotypical individuals, individuals on the autism spectrum fail to attend to and encode the information in the eyes – a region of the face that is critical for recognizing identity and

the information in the eyes – a region of the face that is critical for recognizing identity and expression. Two hypotheses have been advanced to explain why individuals on the autism spectrum fail to look at the eyes of another person. According to the “Eye Avoidance” hypothesis, individuals on the autism spectrum divert their attention away from the eyes as a strategy to regulate the social threat of eye contact. In contrast, the “Gaze Indifference” hypothesis posits that individuals on the

of eye contact. In contrast, the “Gaze Indifference” hypothesis posits that individuals on the autism spectrum regard the eyes as a socially neutral stimulus that neither attracts nor repels their attention. Although the autonomic, neuroimaging, and eye-tracking results are inconclusive, it is plausible that the indifference and avoidance responses reflect behaviors at different developmental time points. Gaze indifference behavior might be evident in early childhood (e.g., 2 years of age) when

points. Gaze indifference behavior might be evident in early childhood (e.g., 2 years of age) when the young child on the autism spectrum is relatively insensitive to the social cues in their world. Eye avoidance behaviors may appear later in childhood (e.g., school age) as a result of increased social interaction and a developing sense of self-awareness. As a test of this developmental account, longitudinal studies could be conducted to monitor for a possible “indifference-to-aversion” shift

longitudinal studies could be conducted to monitor for a possible “indifference-to-aversion” shift in eye-tracking behaviors. If the “eyes are windows into the soul,” then it is little surprise that individuals on the autism spectrum should struggle with understanding the emotions and intentions of other people. Although there might be good reasons why people on the autism spectrum choose not to attend to the eyes of others, understanding the source of this strategy is a rich area for future

attend to the eyes of others, understanding the source of this strategy is a rich area for future research and potential interventions.

## Face Recognition  ### Definition  Face recognition is an important dimension of face processing in which specific information about identity is derived. The capacity to recog-nize individual faces is critical to socialization throughout development and adulthood, provid-ing important social cues that guide interactions. While no scientific consensus exists on whether autistic populations show behavioral impairment in the ability to recognize faces, substantial evi-dence indicates that

show behavioral impairment in the ability to recognize faces, substantial evi-dence indicates that individuals with autism may use atypical visual and neural mechanisms to determine facial identity. By disrupting the extraction of important social information from the face, these abnormalities in processing facial recognition may contribute to the social deficits that characterize autism spectrum disorders (ASD).

### Historical Background  Faces are highly relevant visual stimuli, conveying information critical to social understanding and effective communication. The ability to accurately recognize others’ faces, which allows for quick identification of others and retrieval of information associated with them, is particularly critical to social function. Developmental studies indicate that face recognition facilitates engage-ment with others from infancy; from the first days of life, infants demonstrate

facilitates engage-ment with others from infancy; from the first days of life, infants demonstrate the capacity to recognize their mothers’ faces among others (Pascalis et al. 1995). Further studies of face recognition ability in children have revealed that the basic capacity to differentiate faces matures over the course of development, following a developmental trajectory distinct from general pattern recognition or memory (Carey et al. 1980). Neuropathological findings have emphasized the

pattern recognition or memory (Carey et al. 1980). Neuropathological findings have emphasized the importance of face recognition over the lifespan, suggesting that circumscribed regions of the brain are specialized for differentiating faces. Patients with prosopagnosia, a disorder of face perception, exhibit normal recognition of common objects in spite of severe impairment in recognizing faces (Whiteley and Warrington 1977), while individuals demonstrating severe impairment in recognizing

(Whiteley and Warrington 1977), while individuals demonstrating severe impairment in recognizing common objects retain normal face recognition (Moscovitch and Winocur 1997). Together, these findings suggest a double dissociation between face and object recognition, i.e., that face and object recognition rely upon distinct neural networks in the brain. Subsequent neuroimaging studies have indicated that the region of the temporal lobe known as the fusiform gyrus is activated preferentially during

that the region of the temporal lobe known as the fusiform gyrus is activated preferentially during face recognition tasks, suggesting the specialization of this brain region for face processing (e.g., Kanwisher et al. 1997). However, recent studies reveal that nonface objects with which an individual has expertise and novel face-like objects also animate this brain region, calling this interpretation into question (Grelotti et al. 2005). In addition, early research into the effects of

into question (Grelotti et al. 2005). In addition, early research into the effects of inversion upon recognition accuracy has indicated that face and object recognition rely upon distinct processing strategies. Yin (1969) discovered that inversion of faces impairs recognition in typical adults to a greater degree than does inversion of common objects; this robust phenomenon, known as the “inversion effect,” suggests that adults use a different visual strategy to identify faces versus objects.

effect,” suggests that adults use a different visual strategy to identify faces versus objects. Subsequent research indicates that, whereas object recognition depends upon discrimi-nation of individual features, accurate face recognition relies more heavily upon the configuration of the face, which is disrupted during inversion. This processing strategy, however, may not be specific to faces but more generally applied to stimuli that an individual is expert at recognizing; individuals with

but more generally applied to stimuli that an individual is expert at recognizing; individuals with expertise in nonface objects demonstrate an inversion effect for objects in their domain of expertise comparable to that for faces (Diamond and Carey 1986).

The first experimental investigations of face recognition in autism were carried out by Langdell (1978) to assess whether disruption of the typical visual mechanisms underlying face recognition might contribute to the social impair-ment observed in children with autism; this research indicated that children and young adults with autism are proficient in recognizing faces but employ atypical visual strategies in order to do so. While children with autism did not exhibit behavioral deficits in

strategies in order to do so. While children with autism did not exhibit behavioral deficits in recognizing photographs of their peers, they demonstrated a greater reliance on features located in the lower parts of the face (i.e., the mouth region) than did typical peers. In contrast, typically developing children relied more heavily on the upper part of the faces (i.e., the eye region) to recognize peers, replicating previous findings. Langdell (1978) also found that older children with autism

peers, replicating previous findings. Langdell (1978) also found that older children with autism failed to show an inversion effect for faces, while typically developing children did. Similarly, Hobson, Ouston, and Lee (Hobson et al. 1988) found that adoles-cents and young adults with autism were signifi-cantly better than typical peers at recognizing inverted faces, which they were able to identify as well as upright faces, suggesting that individuals with autism employ different processing

as well as upright faces, suggesting that individuals with autism employ different processing strategies to determine facial identity than do typically developing individuals.

### Current Knowledge  Initial studies of face recognition ability in autism indicated that children and adolescents with autism demonstrate behavioral proficiency in recognizing faces but atypical patterns of visual processing. Current research continues to explore the question of whether individuals with autism are impaired in face recognition. However, the focus of this line of investigation has largely shifted from reporting behavioral performance to clarifying the visual mechanisms and

has largely shifted from reporting behavioral performance to clarifying the visual mechanisms and neural networks that underlie the distinct processing strategies for face recognition in ASD. To date, no consensus exists as to whether individuals with autism demonstrate significant deficits in face recognition relative to typically developing peers matched on cognitive and ver-bal ability. While several recent studies report behavioral impairment in face recognition in children with ASD that is

recent studies report behavioral impairment in face recognition in children with ASD that is independent of overall functioning, many have failed to report such impairment. Although most research to date indicates that recognition deficits in autism are specific to faces, some studies have reported more general impairment in processing both face and nonface stimuli (e.g., Davies et al. 1994). Klin et al. (1999) suggest that these inconsistencies in the literature are attributable to differences

et al. (1999) suggest that these inconsistencies in the literature are attributable to differences in age and functioning in the subject populations, control group criteria, and experimental tasks employed across studies of face recognition in ASD; in addition, Klin et al. (1999) hypothesize that abnormalities in the way facial identity is deter-mined in autism may not always translate into impaired performance because children with autism may develop compensatory strategies for face processing

performance because children with autism may develop compensatory strategies for face processing to overcome difficulties in the critical domain of face recognition. While controversy exists as to whether individ-uals with autism demonstrate behavioral impair-ment in the specific domain of face recognition, an emerging body of research supports the hypothe-sis that atypical visual mechanisms underlie face recognition processing in ASD. Recent studies have provided direct evidence that the facial

face recognition processing in ASD. Recent studies have provided direct evidence that the facial inversion effect observed in typical adults reflects the use of a configural visual strategy (i.e., one that relies upon the spatial relationship between individual features) for face recognition that is distinct from the feature-based strategies employed in object recognition (Freire et al. 2000). Given the lack of inversion effect in autism, this suggests that facial recognition in autism relies

the lack of inversion effect in autism, this suggests that facial recognition in autism relies less upon the configural strategies and more upon the feature-based strategies char-acteristic of object recognition in typical develop-ment.

models can be tested in confirmatory factor analyses, the better fitting model is not viewed as the “truth” but rather a better approximation of reality. Both exploratory and confirmatory approaches consist of multiple methods for estimating the factor structure, including estimating model fit to the observed variables. Norris and Lecavalier (2010) provide an excellent overview of explor-atory factor analytic methods and recommenda-tions for their use in autism and other developmental disorders.

analytic methods and recommenda-tions for their use in autism and other developmental disorders. Tabachnick and Fidell (2016) provide a very accessible introduction to both exploratory and confirmatory methods. Although principal components analysis (PCA) is not strictly a factor analysis method, results are often highly similar, and this method is included when discussing previous factor analytic studies of autism. Conceptual differences are that PCA involves analyzing all the variance in the

studies of autism. Conceptual differences are that PCA involves analyzing all the variance in the indica-tors whereas factor analysis involves analyzing the common variance (covariance) in the indica-tors. Differences between the two methodologies are discussed in detail in Tabachnick and Fidell (2016).

Current Knowledge Defining the Autism Symptom Phenotype Factor analytic methods have helped to clarify the nature and underlying structure of autism symptoms. Although there is not perfect agree-ment across studies, a consensus has emerged as to the number and composition of autism symp-tom dimensions. Based on accumulating evidence from factor analytic studies (Frazier et al. 2008; Snow et al. 2009; van Lang et al. 2006), the new diagnostic criteria for ASD include two domains (DSM-5) instead

van Lang et al. 2006), the new diagnostic criteria for ASD include two domains (DSM-5) instead of three domains (DSM IV) – a combined social communication domain and a restricted, repetitive behavior domain (American Psychiatric Association 2013). Several investiga-tions have since used factor analytic techniques to evaluate the underlying structure of the new criteria (2-factor model; see Fig. 1). Since these analyses were based on a priori hypotheses, con-firmatory factor analysis was used in

Since these analyses were based on a priori hypotheses, con-firmatory factor analysis was used in most studies (Guthrie et al. 2013; Sipes and Matson 2014; Mandy et al. 2012).

ASD Domain A Social Communication Domain B Restricted, Repetitive Beahvior Subdomain A.1 Subdomain B.1 Subdomain A.2 Subdomain B.2 Symptom A.1.1 Symptom A.1.2 Symptom A.2.1 Symptom A.2.2 Symptom B.1.1 Symptom B.1.2 Symptom B.2.1 Symptom B.2.2 Factor Analysis, Fig. 1 Schematic of the ASD factor structure with diagnosis at the top level, followed by the two primary diagnostic symptom domains (as per DSM-5) and subdomains and individual symptoms. Due to the lack of agreement across studies

(as per DSM-5) and subdomains and individual symptoms. Due to the lack of agreement across studies regarding the exact number and composition of subdomains and symptoms, those are not specified/named in this figure

Although these types of studies can be infor-mative, results are mostly driven by the samples used; and in the absence of new samples assem-bled using the DSM-5 criteria, these results need to be interpreted with caution and replicated in future studies. As Kim et al. (2017) note, instead of continuing to debate the optimal number of factors at a given level of the ASD phenotype, perhaps there is value in examining the underlying structural hierarchy in its symptomatology. Such a hierarchical

value in examining the underlying structural hierarchy in its symptomatology. Such a hierarchical approach would inform our under-standing on how features from differing levels (core diagnostic domains, subdomains, related and/or comorbid phenotypes) come together to make up the complex clinical profiles seen in individuals with ASD.

Assessment Tools Used in Autism As previously noted, factor analysis has also been used in studies evaluating the number and com-position of factors/dimensions captured by a specific instrument, typically a measure of autism symptoms (Constantino et al. 2004; Slappendel et al. 2016).

There are hundreds of published studies describing the use of factor analytic methods to evaluate the structure of different tools measur-ing autism-related constructs. Since this section is not meant to serve as a review of the literature, we highlight here an example of a tool – the Social Responsiveness Scale (SRS) – that has triggered constructive debate among researchers over the past decade or so. Several studies exam-ining the SRS, a quantitative trait measure of autism symptoms, have

or so. Several studies exam-ining the SRS, a quantitative trait measure of autism symptoms, have identified only a single autism symptom factor with predominantly social difficulties represented (Cheon et al. 2016; Constantino et al. 2004; Constantino and Gruber 2005). This discrepancy between a single symptom severity model and the 2-factor model in the DSM-5 (also see Fig. 1) is most likely due to the predominance of social indicators exam-ined on the Social Responsiveness Scale and the focus

to the predominance of social indicators exam-ined on the Social Responsiveness Scale and the focus on population samples rather than mixed clinical or autism-only samples. Specifically, the discrepancy between a single autism factor and separate social communication and restricted/repetitive dimensions is at least partly due to the fact that, in population samples, the majority of healthy individuals will show less variation in symptom levels, while a small minority of mostly affected

individuals will show less variation in symptom levels, while a small minority of mostly affected individuals will show very large variations in symptom levels. This pattern exaggerates correlations among social commu-nication and restricted/repetitive behavior symp-toms, resulting in a single symptom severity factor.

In a more recent study of the SRS-2, Frazier et al. (2014) showed that both a two-factor struc-ture (as per DSM-5) and a three-factor structure (DSM-5 but with restricted, repetitive behavior factor breaking into two factors, insistence on sameness and repetitive mannerisms; see also Georgiades et al. 2007) provided acceptable model fits using confirmatory factor analysis. Of note were the intercorrelations among symp-tom factors/domains, something that suggests that understanding their

intercorrelations among symp-tom factors/domains, something that suggests that understanding their co-emergence remains a high priority in conceptualizing common clin-ical profiles and causal mechanisms underlying ASD (Frazier et al. 2014).

Grouping Variables and Individuals One of the recent and promising methodological advances in the field has been the use of novel techniques that simultaneously examine categori-cal and dimensional models of ASD. By using factor mixture modeling, a method that includes factor analysis and latent class analysis, research-ers are able to move away from the simplistic debate of “categories versus dimensions” and examine phenotypic models of ASD that integrate the two. By doing so, empirical

dimensions” and examine phenotypic models of ASD that integrate the two. By doing so, empirical methods can be used to begin to disentangle the observed het-erogeneity in ASD and examine how both, vari-ables and individuals, come together to form more homogeneous dimensions and subgroups within the autism spectrum (Frazier et al. 2010; Georgiades et al. 2013).

Future Directions In an era where Big Data is becoming more and more prevalent, factor analytic studies may prove to be very useful in “reducing” information with-out losing the necessary components that can describe the nature and structure of the ASD phe-notype. Such an approach, combined with new methods used for the identification of homoge-neous subgroups (Frazier et al. 2010; Georgiades et al. 2013) within the spectrum, has the potential to inform the development of more precise

et al. 2013) within the spectrum, has the potential to inform the development of more precise diag-nostics and interventions.

To truly understand the causes, diagnosis, and prognosis of ASD, prospective factor analytic studies are needed to examine the hierarchical structure of the revised DSM-5 criteria in relation to time (Georgiades et al. 2017). Such studies can also examine the associations and potential interactions between the core autism domains and symptoms (see Fig. 1) and the “clinical spec-ifiers” (e.g., intellectual and language impair-ment, comorbid disorders, etc.) introduced in the DSM-5. Factor

intellectual and language impair-ment, comorbid disorders, etc.) introduced in the DSM-5. Factor analytic methods could also be expanded to better understand underlying neurobiological characteristics. For example, different methods may be useful for reducing genetic variants and/or imaging signals variants to a smaller set of dimensions that may corre-spond with specific symptom and/or behavior profiles.

Future work using factor analyses and related methods would benefit from using empirically supported approaches for determining the number and composition of dimensions. It is clear that a large number of previous studies did not use empirically recommended approaches to conducting analyses. In future work, it will be important that researchers follow general recom-mendations for implementing both exploratory and confirmatory methods (McCutcheon 2002; Muthén 2001; Norris and Lecavalier 2010;

both exploratory and confirmatory methods (McCutcheon 2002; Muthén 2001; Norris and Lecavalier 2010; Ruscio et al. 2006).

See Also ▶Latent Variable Modeling ▶Statistical Approaches to Subtyping  Factors Affecting Outcomes Definition The outcome for individuals with autism is very variable and depends not only on the charac-teristics of the individual but on many family and environmental factors and external support systems. Childhood factors that are associated with later outcome include early language dev-elopment, IQ, severity of autism symptoms, and access to appropriate autism-specific intervention. In

IQ, severity of autism symptoms, and access to appropriate autism-specific intervention. In adolescence and adulthood, the onset of comor-bid mental health problems and the lack of ade-quate support and interventions are associated with poorer outcomes.

Historical Background It has been evident since the very earliest follow-up studies of Eisenberg (1956), Rutter et al. (1967), Kanner (1973), and others that outcome in autism is highly variable. Many individuals remain highly dependent on support throughout their lives; others are able to live independently and some go on to make significant achievements. Both Asperger (1944) and Kanner (1971) were struck by the wide heterogeneity in outcome among individuals with autism. Kanner (1971), for

were struck by the wide heterogeneity in outcome among individuals with autism. Kanner (1971), for example, noted that “The results of the follow-up after about 30 years . . . invite serious curiosi-ties about the departures from the initial likeness, ranging all the way from complete deterioration to a combination of occupational adequacy with limited, though superficially smooth social ad-justment.” Similarly, Asperger (1944) commented that although the social integration of individuals with

Similarly, Asperger (1944) commented that although the social integration of individuals with autism might be expected to be extremely difficult, if not impossible, this was the case only for a minority and “almost exclusively in those people with considerable intellectual retardation in addition to autism . . . This is not so with intellectually intact autistic individuals.” Indeed, he suggested that “able autistic individ-uals can rise to eminent positions and perform with such outstanding

that “able autistic individ-uals can rise to eminent positions and perform with such outstanding success that one may even conclude that only such people are capable of certain achievements.” The factors affecting outcome, and the reasons why some individuals are able to make very good progress while others continue to have significant problems throughout their lives, has been the focus of considerable research over the years.

Current Knowledge Although many follow-up studies have indi-cated a relatively poor outcome for individuals with autism, the results of such research cannot be interpreted without detailed information on the characteristics of the individuals involved. Kanner (1943) and Asperger (1944) were among the first to note a possible association between higher intellectual ability and greater achieve-ments in adulthood. Subsequent follow-up studies have confirmed that childhood IQ is highly cor-related

in adulthood. Subsequent follow-up studies have confirmed that childhood IQ is highly cor-related with adult outcome. For example, in a series of studies conducted in the UK in the late 1960s and early 1970s, Rutter and colleagues (Lockyer and Rutter 1969; Rutter et al. 1967) found that individuals with an IQ below 60 were far more likely to have a “poor” or “very poor” outcome than those with an IQ above 60. Individ-uals with an IQ of at least 70 (i.e., at the lower end of the normal range)

an IQ above 60. Individ-uals with an IQ of at least 70 (i.e., at the lower end of the normal range) tended to be rated as having a “fair” outcome, while those with a “good out-come” had an average IQ above 80. More recent studies, involving individuals across the IQ range (i.e., from severe cognitive impairment to superior intelligence), have also noted a strong associa-tion between IQ and outcome, with very few individuals with a childhood IQ below 75 living independently as adults (see Howlin

with very few individuals with a childhood IQ below 75 living independently as adults (see Howlin and Magiati 2017; Magiati et al. 2014; Steinhausen et al. 2016 for reviews). However, childhood IQ alone is not the only factor affecting outcome (Bal et al. 2015; Lord et al. 2015), and many individuals with a high IQ in childhood still do poorly in adulthood. Thus, it seems that while only indi-viduals with a childhood IQ in the average range or above do well in adulthood, even among those with

with a childhood IQ in the average range or above do well in adulthood, even among those with an IQ above 70, outcome can still vary markedly (Steinhausen et al. 2016). The range of early cognitive abilities may also be important, in that children who are able to score only on nonverbal tests, or on a very limited range of subtests – even if their scores on these assess-ments are within the normal range – tend to have a poorer prognosis than those able to score on both verbal and nonverbal

range – tend to have a poorer prognosis than those able to score on both verbal and nonverbal tests in early childhood (Howlin et al. 2014).

Another crucial indicator of later outcome is early language development and it is now well established that there is a strong link between early language abilities and subsequent develop-ment (Magiati et al. 2014). Thus, the majority of individuals who go on to do well as adults have usually developed at least some useful speech by the age of 5 years. However, there are exceptions to this, and some children with significant early delays in language later catch up and may make good progress

some children with significant early delays in language later catch up and may make good progress more generally. Overall, however, language impairments, particularly if coupled with low IQ, are the factors most strongly associ-ated with a poorer adult outcome. In adulthood, individuals with good verbal comprehension, good spoken language, and a verbal IQ in the normal range are significantly more likely to be functioning well socially than those who are impaired in these areas (Howlin et al.

likely to be functioning well socially than those who are impaired in these areas (Howlin et al. 2014). There also appears to be an association be-tween the severity of early autistic symptomatol-ogy and later outcome, although findings here are inconsistent. Indeed, predicting later adult outcomes from early child characteristics remains highly challenging (Howlin and Magiati 2017; Lord et al. 2015). There is a need to focus more research on different patterns of developmental trajectories in

There is a need to focus more research on different patterns of developmental trajectories in autism, as such knowledge may be important for identifying different genetic aetiologies as well as having implications for more individually tailored interventions (Lord et al. 2015).

Although many follow-up studies suggest that the severity of autistic symptoms tends to reduce with age, the overall level of autistic symptom-atology in adulthood continues to affect social and economic independence (Gillberg et al. 2016; Howlin et al. 2013; Lord et al. 2015). The pres-ence of mental health problems can also have a very negative impact on outcome, as well as prov-ing difficult to treat effectively (Howlin and Magiati 2017). Although estimates of the fre-quency of mental health

treat effectively (Howlin and Magiati 2017). Although estimates of the fre-quency of mental health problems in autism vary widely, it is estimated that at least of half of all individuals with autism suffer from significant emotional and psychiatric difficulties (Croen et al. 2015; Russell et al. 2016; Moss et al. 2015). The most frequent problems relate to stress, anxiety, and depression, but attention def-icit disorders and obsessive compulsive disorders are also common. Physical disorders,

def-icit disorders and obsessive compulsive disorders are also common. Physical disorders, including epilepsy, are more frequent than in the general population (Croen et al. 2015) and these too can have a negative impact on adult functioning.

Data on the effects of ageing remain limited. Although overall severity of autism symptoms tends to reduce between early childhood and early adulthood, there are few studies of trajecto-ries of change in older individuals. Nevertheless, some small-scale studies suggest that certain cog-nitive skills (notably visual and working memory) may be less prone to decline in elderly people with autism than in the general population (Lever and Geurts 2016). There is also some indication that quality of

in the general population (Lever and Geurts 2016). There is also some indication that quality of life in ASD is less affected by age than in the general population (van Heijst and Geurts 2015), but to date, studies on ageing in ASD are small scale and involve few participants aged over 60.

The role of gender remains uncertain since most follow-up studies have involved so few females. There are some suggestions that women with autism have poorer social outcomes, espe-cially with respect to employment (Taylor et al. 2015) and quality of life (Bishop-Fitzpatrick et al. 2016). However, other studies (Kirby et al. 2016; Woodman et al. 2015) have identified no signifi-cant impact of gender.

The role of external, environmental factors on outcome is yet another area in need of much greater research. Although, to date, there is no evidence that early, highly intensive behavioral or other interventions make a significant differ-ence to functioning in adulthood, it is likely that the quality of early intervention, access to appro-priate education programs, and support for fami-lies will have an important impact on later life. There are indications, too, that mental health dif-ficulties

have an important impact on later life. There are indications, too, that mental health dif-ficulties in adulthood may be associated with environmental disturbance, such as the transition from school, difficulties in coping with college work or employment, family disruption and loss, and change and unpredictability in daily life. The paucity of appropriate adult services, especially for individuals of average IQ, is also likely to be another reason why adults with ASD are more economically,

of average IQ, is also likely to be another reason why adults with ASD are more economically, educationally, and socially disad-vantaged than adults with other developmental or intellectual disabilities (Roux et al. 2013). Recent studies also suggest the importance of a wide range of other child and adult factors associated with social functioning and autism symptom severity in adulthood. These include bullying, extent of inclusion in school, maternal warmth/quality of mother–child

These include bullying, extent of inclusion in school, maternal warmth/quality of mother–child relationships, physical health, independence in daily living skills, executive function, stress, physical health, and adaptive behavior skills (see Howlin and Magiati 2017 for review).

Future Directions Long-term follow-up studies over the past 50 years have taught us a great deal about the factors that are associated with outcome in adult-hood. However, many issues still remain to be resolved. Thus, although there is good evidence that language, IQ, and severity of autism are all linked to longer-term prognosis, we still know relatively little about how these factors interact, or how far environmental, genetic, fam-ily, social, educational, racial, or other variables may

or how far environmental, genetic, fam-ily, social, educational, racial, or other variables may ameliorate or exacerbate their impact. The role of temperament and personality is almost unexplored, and almost nothing is known about factors that influence functioning in the later years of life. Research into effective treatments has led to major improvements in early intervention for many children. However, how long the effects of such interventions endure remains unknown, and much longer-term

However, how long the effects of such interventions endure remains unknown, and much longer-term follow-up studies are needed if we are to judge the true benefit of these (often very costly) programs. In summary, although research into children with autism has made significant strides forward over recent years, leading to major advances in diagnosis, understanding of causes, and treat-ment, research into adulthood still has a long way to go. Follow-up studies of individuals identified and fully

into adulthood still has a long way to go. Follow-up studies of individuals identified and fully assessed as children and followed up periodically from decade to decade are essential if we are to understand the factors that influence prognosis and how these factors exert their effects.

See Also ▶Adulthood, Transition To ▶Asperger Syndrome Follow-Up Studies ▶Employment ▶Employment in Adult Life ▶Factors Affecting Outcome ▶Living Arrangements in Adulthood ▶Psychotic Disorder  Fading Synonyms Prompt fading; Stimulus fading Definition Fading is the process of reducing assistance (i.e., cues, prompts, supports) until no longer needed so that the skill or response being taught is exhibited independently. In behavioral instruction, fading generally refers to gradually removing

exhibited independently. In behavioral instruction, fading generally refers to gradually removing supports put in place during training programs so that the target behavior eventually occurs independently. For example, when teaching a child with autism how to spell his name, the teacher starts with stating each letter out loud and having the child repeat them until he does so without error. The adult then instructs the child to spell his name and starts by saying only the first letter out loud

adult then instructs the child to spell his name and starts by saying only the first letter out loud and then only “mouthing” (silently moving lips) the remaining letters using no voice. Eventually, the teacher asks the child to spell his name, and he does so without additional prompts. The removal of the verbal prompts illustrates the process of fading.

See Also ▶Prompt Fading ▶Prompts  FAFSA Synonyms Financial aid; Grants; Scholarships Definition FAFSA is an acronym which stands for Free Application for Federal Student Aid. FAFSA is the mechanism by which the government distrib-utes grants, loans, and student work study funds. More specifically, it is the gateway by which college students and their families access Federal Pell Grants, Stafford and Perkins Loans, Federal Supplemental Education Opportunity Grants, and Federal Work-Study program

Perkins Loans, Federal Supplemental Education Opportunity Grants, and Federal Work-Study program funds. By com-pleting the FAFSA form, families learn what their expected family contribution (EFC) will be. The EFC is the amount of money the family is expected to contribute to the student’s college education. Prior to 2008, only students enrolled full time in a degree-bearing program at an Insti-tution of Higher Education (IHE) were eligible to complete the FAFSA application.

With the passage of the Higher Educa-tion Opportunity Act (HEOA) of 2008 (P.L. 110-315), the regulations governing finan-cial aid and the FAFSA process changed to make it easier for students with intellectual dis-abilities (ID) to gain access to postsecondary edu-cation. The term ID is broadly defined and can include students with autism spectrum disorders or cognitive impairments. According to HEOA, a student with an intellectual disability is one who has mental retardation or a significant

HEOA, a student with an intellectual disability is one who has mental retardation or a significant cognitive impairment and is or was eligible for a Free and Appropriate Public Education (FAPE) under the Individuals with Disabilities Education Act (IDEA). This can include students who were homeschooled or attended private schools. The college is responsible for the determination and supporting documentation of the student’s ID (Bergeron et al. 2010).

In order for a student with an ID to be eligible, he or she must be enrolled in an approved Com-prehensive Transition and Postsecondary Pro-gram (CTP). He or she also must meet all of the general student eligibility requirements except the following: (1) he or she does not have to be enrolled for the purpose of obtaining a degree or certificate; (2) he or she is not required to have a high school diploma or have passed an ability-to-benefit test; and (3) he or she must maintain satisfactory

diploma or have passed an ability-to-benefit test; and (3) he or she must maintain satisfactory academic progress under school’s policy for students in the CTP (Finkel et al. 2010).

After a public commentary period, the US Department of Education began accepting appli-cations from IHE, for approval of their Compre-hensive Transition Programs (CTP) in the latter part of 2010. An eligible CTP must be offered by a college that already has an established financial aid program for its general student body. It also must be designed to support students with intel-lectual disabilities (ID) and include an advising and curriculum structure. The CTP must require students with ID to

(ID) and include an advising and curriculum structure. The CTP must require students with ID to participate in courses and activities with students without disabilities (Bergeron et al. 2010). Students with ID will be eligible for Federal Pell Grants, Federal Supplemental Education Opportunity Grants, and Federal Work-Study programs funds only (Finkel et al. 2010). It is important to note that students with ID currently are not eligible for Perkins or Stafford loans. US DOE-approved CTPs are

students with ID currently are not eligible for Perkins or Stafford loans. US DOE-approved CTPs are listed at the National Coordinating Center and include the Consortium for Postsecondary Education for Individuals with Developmental Disabilities and the Center for Postsecondary Education for Individuals with Intellectual Disabilities.

See Also ▶Comprehensive Transition Program ▶Free Appropriate Public Education ▶Individuals with Disabilities Education Act (IDEA) ▶Transition Planning  False Positive Synonyms Alpha (α) error; Type I error; Wrong decision Definition A false positive occurs when the null hypothesis is true and rejected erroneously. That is, a difference is observed when there is no true difference. An individual may be diagnosed with a condition, for example, that he does not have. A test that pro-duces a

may be diagnosed with a condition, for example, that he does not have. A test that pro-duces a substantial number of false positives (i.e., Type 1 Errors) is unable to systematically rule out disorders and diagnoses, and consequently has poor specificity.

See Also ▶Sensitivity and Specificity  False-Belief Task Definition False-belief task is based on false-belief understand-ing which is the understanding that an individual’s belief or representation about the world may contrast with reality. False-belief task is a frequently used methodology to examine theory of mind (i.e., child’s ability to construct people in terms of internal mental states such as their beliefs, Wellman 1993). It is considered as litmus test of theory of mind, in that in

such as their beliefs, Wellman 1993). It is considered as litmus test of theory of mind, in that in such cases, it becomes possible to distinguish unambiguously between the child’s (true) belief and the child’s awareness of someone else’s differ-ent (false) belief (Dennett 1978). First-order false-belief tasks involve attribution about other’s false belief with regard to real events; whereas, second-order false-belief tasks are related with what people think about other people’s thoughts. In

false-belief tasks are related with what people think about other people’s thoughts. In second-order false-belief tasks, the child is required to attribute the false belief of one person based on the thoughts of another (Perner and Wimmer 1985). An example of a commonly used first-order false-belief task is the “Smarties,” in which the child is required to predict another child’s perception about the content of a box of candies (that actually includes a pencil) (Gopnik and Astington 1988). A

the content of a box of candies (that actually includes a pencil) (Gopnik and Astington 1988). A commonly used second-order false-belief task is the Perner and Wimmer (1985) “ice-cream van story” (or John and Marry tasks). In this story, Marry is asked to predict John’s thoughts about the location of the ice-cream man. Only Marry knows the actual location (in the school), but John knows about his former intention to stay in the park. Thus, Marry needs to take into consideration John’s thoughts

former intention to stay in the park. Thus, Marry needs to take into consideration John’s thoughts about the location of the ice-cream man, based on the ice-cream man’s original intentions.

See Also ▶Theory of Mind  Family Accommodation in Autism Spectrum Disorder Definition Ways in which family members, mostly parents, modify their behavior to help a child avoid or alleviate distress and negative affect associated with mental health problems (Lebowitz and Bloch 2012; Lebowitz et al. 2014).

Historical Background A sizable body of literature indicates that family accommodation is common among families of children with obsessive-compulsive disorders (OCD) and anxiety disorders. Such accommoda-tion is associated with both proximal and distal negative outcomes. High levels of family accom-modation in these populations are associated with increased severity of anxiety or OCD symptoms, poorer psychosocial functioning, and elevated parental distress (Caporino et al. 2012; Lebowitz and

poorer psychosocial functioning, and elevated parental distress (Caporino et al. 2012; Lebowitz and Bloch 2012; Lebowitz et al. 2013, 2014; Storch et al. 2007). Additionally, higher levels of family accommodation are predictive of poorer subsequent response to treatment in children with OCD and anxiety disorders (Lebowitz et al. 2016; Kagan et al. 2016). These findings have already yielded clinical benefit through the devel-opment of an efficacious parent-based interven-tion that targets the

benefit through the devel-opment of an efficacious parent-based interven-tion that targets the reduction of family accommodation (Lebowitz et al. in press). This work raises the possibility that the study of family accommodation in children with other disorders could yield similar contributions. Several findings point to a partial phenotypic overlap between autism spectrum disorders (ASD), OCD, and anxiety disorders, in addition to a possible partial overlap in their etiology. The phenotypic

and anxiety disorders, in addition to a possible partial overlap in their etiology. The phenotypic overlap exists with regard to the restricted and repetitive behaviors (RRBs) inher-ent to a diagnosis of ASD. RRBs are defined in the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM5) (APA 2013) as “restricted, repetitive patterns of behavior, interests, or activities. . .” Within OCD, compulsions are defined as “repetitive behaviors or mental acts.” While not synonymous, these two

compulsions are defined as “repetitive behaviors or mental acts.” While not synonymous, these two concepts bear resemblance to one another (Jacob et al. 2009; Wood and Gadow 2010). In addition to the partial phenotypic overlap, high comorbidity between these diagnostic constructs has been noted, with greater prevalence of anxiety disorders and OCD in children with ASD than in typically develop-ing children (van Steensel et al. 2011). Children of parents with OCD or ASD are at greater risk of ASD

children (van Steensel et al. 2011). Children of parents with OCD or ASD are at greater risk of ASD or OCD, respectively (Meier et al. 2015), and the likelihood that an individual will be diag-nosed with OCD or anxiety disorders is elevated in relatives of children with ASD (Jacob et al. 2009), pointing to some degree of shared heritability. Given the above-noted links between OCD, anxiety disorders, and the RRBs of children with ASD, as well as the potential biological links between the

disorders, and the RRBs of children with ASD, as well as the potential biological links between the disorders, an examination of family accommodation in the context of autism, specifi-cally regarding RRBs, was undertaken.

Current Knowledge Building on the data related to family accommo-dation in OCD and anxiety disorders, an exami-nation of family accommodation in the context of RRBs in ASD was deemed worthwhile (Feldman et al. 2019). Applying the concept of accommo-dation to RRBs, however, is complicated by sev-eral factors. Research has suggested the existence of different sub-groups of RRBs, including repet-itive motor and sensory behavior, insistence on sameness, ritualistic behavior, compulsive behav-ior,

motor and sensory behavior, insistence on sameness, ritualistic behavior, compulsive behav-ior, circumscribed interests, and self-injurious behavior (Honey et al. 2012; Leekam et al. 2011). Notably, different types of RRBs have been linked to different psychiatric symptoms (e.g., anxiety, depression, and oppositional-defiant symptoms; Lidstone et al. 2014; Stratis and Lecavalier 2013). These and other findings (e.g., Leekam et al. 2011) suggest that the various types of RRBs, and perhaps even

other findings (e.g., Leekam et al. 2011) suggest that the various types of RRBs, and perhaps even different spe-cific RRBs within a single sub-group, may differ in both their etiologies and functions. Furthermore, RRBs may also vary in function and in degree of adaptiveness, indicating that accommodation of these RRBs may be either potentially helpful or detrimental to the child and family system. Certain RRBs may allow the indi-vidual to occupy themselves, regulate hyper- or hypo-sensory

Certain RRBs may allow the indi-vidual to occupy themselves, regulate hyper- or hypo-sensory arousal, or reduce anxiety (Leekam et al. 2011). In some cases, these behaviors can even provide a source of income and employment (Attwood 2003; Howlin 2003). Other RRBs, however, such as self-injurious behaviors, are unambiguously harmful. Studies link certain types of RRBs, including preoccupation with object parts, sensory interests, and stereotyped motor behaviors, to poorer reasoning skills, lower

object parts, sensory interests, and stereotyped motor behaviors, to poorer reasoning skills, lower adaptive functioning at a later age, and increased caregiver stress (Harrop et al. 2016; Troyb et al. 2016). Further complicating the mat-ter, findings suggest that the same RRBs may have differing etiologies and serve different functions for different children (Leekam et al. 2011; Stratis and Lecavalier 2013).

Particularly relevant to the issue of family accommodation in the context of ASD is the role of RRBs in regulating arousal and in alleviating anxiety and distress, similar to the role of compul-sive behaviors in OCD (Leekam et al. 2011; Lidstone et al. 2014). It has been proposed that family accommodation of children’s OCD symp-toms increases the severity of these symptoms over time by enabling avoidance of distress-inducing stimuli and hampering the development of more adaptive strategies for

of distress-inducing stimuli and hampering the development of more adaptive strategies for independent regu-lation of negative arousal (Lebowitz 2013; Storch et al. 2007). To the extent that RRBs might serve to alleviate distress in children with ASD, family accommodation of RRBs may function in a sim-ilar manner and could potentially lead to decreased self-regulation.

Prior to Feldman et al. (2019), limited work had been done examining the role of family accommo-dation in ASD. Russel et al. (2013) examined a small group of adolescents and adults (n ¼ 23) with comorbid ASD and OCD who received cognitive behavioral therapy for OCD. In that study, higher reported family accommodation prior to treatment was associated with poorer response to the treatment. Storch et al. (2015) examined the prevalence and correlates of family accommodation of anxiety symptoms in

et al. (2015) examined the prevalence and correlates of family accommodation of anxiety symptoms in 40 children with ASD and comorbid anxiety dis-orders. In line with previous findings on family accommodation in anxiety disorders, family accommodation of anxiety symptoms in the con-text of ASD was found to be highly prevalent and was correlated with the severity of the children’s anxiety symptoms. The same study also found that family accommodation decreased following cognitive behavioral

The same study also found that family accommodation decreased following cognitive behavioral therapy, with the reduction in family accommodation associated with the improvement in the children’s anxiety symptoms. Of note, both of the aforementioned studies focused on accommodation of the anxiety or OCD symptoms and did not investigate accom-modation of RRBs.

The first study to examine family accommo-dation of core ASD symptoms, specifically RRBs, piloted the use of the Family Accommo-dation Scale for Restricted and Repetitive Behav-iors (FAS-RRB; Feldman et al. 2019). This study found that accommodation of RRBs is highly prevalent, with 80% of parents engaging in fam-ily accommodation at least once a month and 55% reporting daily accommodation. These rates of accommodation are high, but lower than those reported in pediatric OCD (Lebowitz et al.

rates of accommodation are high, but lower than those reported in pediatric OCD (Lebowitz et al. 2016) and anxiety disorders (Lebowitz et al. 2013, 2014, 2016; Thompson-Hollands et al. 2014), as well as those reported for anxiety symptoms in children with ASD (Storch et al. 2015). The most common accommodations of RRBs reported by parents of children with ASD were (1) providing symptom-related items, (2) participating in symptom-related actions, and (3) assisting in the avoidance of

items, (2) participating in symptom-related actions, and (3) assisting in the avoidance of symptom-related stimuli. In this study, higher levels of accommodation were strongly associated with higher RRB severity (r ¼ 0.820, p < 0.001). Additionally, higher levels of accommodation were associated with poorer communication (r ¼   0.258, p ¼ 0.029) and daily living skills (r ¼   0.407, p < 0.001) in the children, and a majority of parents report feeling distress due to the accommodation. Most

in the children, and a majority of parents report feeling distress due to the accommodation. Most parents also reported their children responding aggressively when par-ents do not accommodate. These findings parallel previous work focused on children with OCD and anxiety disorders (Lebowitz et al. 2013, 2016; Thompson-Hollands et al. 2014).

While certain similarities exist between fam-ily accommodation of RRBs in ASD and accom-modation of OCD and anxiety disorders, there are also significant differences. Every child with ASD presents with some RRBs. However, the frequency, severity, and nature of these behaviors vary widely. Some children with ASD experience difficulty primarily in the area of social commu-nication and interaction while presenting with relatively few RRBs. In such cases, parents may have fewer RRBs to accommodate

presenting with relatively few RRBs. In such cases, parents may have fewer RRBs to accommodate compared with cases in which the RRBs are a more prom-inent clinical feature. In the context of OCD and anxiety, the accommodation can relate to almost any clinical feature of the disorder. This may partially explain the lower rates of accommoda-tion reported by parents of children with ASD relative to those reported in OCD and anxiety disorders. Additionally, in light of the heteroge-neity in form

those reported in OCD and anxiety disorders. Additionally, in light of the heteroge-neity in form and function of RRBs, it is yet to be determined whether a reduction of accommoda-tion of RRBs would be invariably beneficial or whether clinical recommendations must be informed by a functional assessment of the child’s symptoms.

Future Directions Further research on the directions of associations and the causal links that may exist between accommodation and severity of ASD is required. RRB severity and lower adaptive functioning may lead to increased family accommodation. It is alternatively plausible that, as in OCD and anxiety disorders, family accommodation leads to more severe child symptomatology and to greater func-tional impairment in the children. A third possi-bility is that the relationship is bidirectional

impairment in the children. A third possi-bility is that the relationship is bidirectional or moderated by variables not yet taken known. Lon-gitudinal research is critically needed in order to address these questions. An additional area worthy of attention is the motivation of parents engaging in family accom-modation of RRBs. When asked to provide a qualitative description of their child’s RRBs, some parents used language expressing a belief that these behaviors were not optional, such as

some parents used language expressing a belief that these behaviors were not optional, such as “must” or “have to,” in describing both the RRBs and their own accommodations. As such, parents of children with ASD may be providing accom-modations due to their belief that no other alter-natives exist. Children’s aggressive responses to not being accommodated, reported by a majority of parents, are another likely contributor to the maintenance of such parental accommodations. Family accommodation

another likely contributor to the maintenance of such parental accommodations. Family accommodation may offer a useful tar-get for clinical interventions for individuals with ASD and their parents or families. Future work elucidating the role of accommodation should aim to determine how best to support parents in this context. In both OCD and anxiety disorders, cur-rent interventions emphasize the supportive reduction of family accommodation as a path to increasing independent coping in the

the supportive reduction of family accommodation as a path to increasing independent coping in the child (Lebowitz 2015; Kagan et al. 2016; Lebowitz et al. 2018a, b; Salloum et al. 2018). Recent work supports the efficacy of SPACE (Supportive Parenting for Anxious Childhood Emotions), a parent-based intervention that reduces family accommodation of childhood anx-iety and OCD. In a recent randomized controlled trial, SPACE was as efficacious as CBT in treating child anxiety disorders, and it led

controlled trial, SPACE was as efficacious as CBT in treating child anxiety disorders, and it led to greater reduc-tion in family accommodation (Lebowitz et al. 2019). A similar approach may be beneficial in cases of ASD. The development and evaluation of such an intervention program targeting the accom-modation of RRBs would be novel and could represent an important step forward in autism-specific interventions.

Family Burden Definition The physical, emotional, and economic impact directly associated with the responsibility of car-ing for a person with ASD, including the second-ary impact on all family members. These can include: (a) the economic cost of care (Montes and Halterman 2008), including lost opportunities for income (Jabrink 2007); (b) quality of life (Lee et al. 2008; Khanna et al. 2010); and (c) the impact on siblings (Harris and Glasberg 2003). Unlike the typical costs associated with

and (c) the impact on siblings (Harris and Glasberg 2003). Unlike the typical costs associated with child rearing, this burden often extends – and may increase – into adulthood, for those families who elect guard-ianship. It is reasonable to expect that this burden may vary as a function of the family’s race, eth-nicity, income, and education, given other find-ings suggesting disparities in accessing health services, and cultural differences in attitudes toward disability. It is generally

accessing health services, and cultural differences in attitudes toward disability. It is generally believed that var-ious types of supports, including parent training, respite care, and wraparound services, can miti-gate some aspects of the family burden.

See Also ▶Family-Centered Care, Second Edition ▶Guardianship ▶Health Disparities ▶Parent Training ▶Respite Care ▶Wraparound Services  Family Therapy Definition Family-based treatments attempt to decrease inter-actions between family members that contribute to psychiatric disorders and to increase interactions that protect them from these problems. The psychoeducational model is most commonly used in conjunction with psychiatric disorders. Family life is all about relationships and

commonly used in conjunction with psychiatric disorders. Family life is all about relationships and commu-nication. Autism spectrum disorders are about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting relationships in families. The family burden for parents and siblings is very high in families with a member on the spectrum, and the divorce rate is also high in families with children who have autism. In marriage, if one of the

the divorce rate is also high in families with children who have autism. In marriage, if one of the part-ners is on the spectrum, there will be more prob-lems than just the normal marriage conflicts. Collaborative family work is directed to meet the needs of people with autism and their families and should address problems in each developmen-tal phase of the family life cycle. Parents of a young autistic child are perplexed when they real-ize that the child is not developing properly and may

autistic child are perplexed when they real-ize that the child is not developing properly and may feel rejected or unimportant when the child does not seek their attention. Getting a diagnosis and services may be stressful, as well as the pro-cess of adaptation: accepting the diagnosis and informing other family members and friends. At school age, the family has to adapt in many ways: confrontation with outside world, dealing with aversive reactions of peers, specific ways of rearing, arranging

with outside world, dealing with aversive reactions of peers, specific ways of rearing, arranging for child care, and dealing with professionals. In adolescence, families have to cope with the chronicity of the child’s disability, with issues of aggression, odd behavior, sexuality, and addiction. Parents have to delay the develop-mental phase of launching and moving on and are confronted with the perspective of endless care. Marriages with an autistic member have a seri-ous risk of running into

perspective of endless care. Marriages with an autistic member have a seri-ous risk of running into trouble. The spouse with ASD misses relational skills, there will be an asymmetry in the relation, and the non-ASD spouse will feel lonely and neglected.

A diagnosis of an autism spectrum disorder is likely to be experienced as ambiguous loss in a family, because resolution of the situation is not possible and the outcome is not predictable, espe-cially when the individual with ASD may give an outward appearance of health, thus raising too high expectations for his functioning. Sometimes, families have several autistic mem-bers, for instance, one or two siblings, or a father and a son both have the condition, complicating family function and

or two siblings, or a father and a son both have the condition, complicating family function and rearing practices even more. Family interventions have been less effective in reducing core ASD symptoms, yet they do contribute to reducing the comorbid family and behavior problems associated with the disorder in children and adolescents. A biopsychosocial approach with a treatment package (e.g., family treatment, behavioral therapy, and pharmacology) is common in most clinical settings. Some

family treatment, behavioral therapy, and pharmacology) is common in most clinical settings. Some models and schools of family therapy should not be applied in families with an autistic member, because they focus primarily on context, meaning, and mentalizing processes. Moreover, family and couples’ therapists should adapt their style, taking into account that family members may have prob-lems with imagination, generalizing, and they need basic knowledge about ASD in order to work effectively

imagination, generalizing, and they need basic knowledge about ASD in order to work effectively with these families.

Historical Background For decades following Kanner’s description of the disorder, it was wrongly believed that the parents, especially the mother, were responsible for caus-ing the disorder by emotional neglect. Family psychoeducation started in the 1970s of last century in the treatment of schizophrenia. It was based on the premise that the patient has a brain disorder and that families need to be supported in their care of the mentally ill person. The emphasis on the biological aspect of the

be supported in their care of the mentally ill person. The emphasis on the biological aspect of the ill-ness is intended to correct that families somehow cause the illness. Family psychoeducation nowadays is com-monly used in various chronic childhood and adult illnesses.

Current Knowledge Nowadays, the association of genetic factors in the etiology of autism spectrum disorders is well established. Problems in parenting and family dys-function may be a response to the child and adoles-cent psychopathology. A psychoeducational approach in families is the treatment of choice in clinical practice. It is defined as the systematic administration of information to both patient and family (significant others) about symptoms, diag-nosis, treatment, and prognosis. Its aim

and family (significant others) about symptoms, diag-nosis, treatment, and prognosis. Its aim is behav-ioral change and not just teaching for the sake of increasing knowledge. It must be given in doses, as the recipients are able to hear it and given repeti-tively over time. Other goals are improving family skills, positive communication development, and increased social involvement for the family. Family psychoeducation includes the provision of emo-tional support and resources during periods

Family psychoeducation includes the provision of emo-tional support and resources during periods of tran-sition and crisis.

Future Directions Early diagnosis and treatment of the child and its family may have positive effects for some chil-dren. There is no cure for ASD, yet various treat-ments are used to treat the effects of the disorder.

In summary, although research into children with autism has made significant strides forward over recent years, leading to major advances in diagnosis, understanding of causes, and treat-ment, research into adulthood still has a long way to go. Follow-up studies of individuals identified and fully assessed as children and followed up periodically from decade to decade are essential if we are to understand the factors that influence prognosis and how these factors exert their effects.

See Also ▶Family Burden  Family-Centered Care, Second Edition Synonyms Family-centered practice; Patient- and family-centered care Definition Family-centered care is an approach to care that is based on the understanding that the family is a child’s primary source of strength and support (American Academy of Pediatrics 2012). As such, the family is recognized as an integral part of the team in collaboration with service providers to best support the care of the child. Service pro-viders view

collaboration with service providers to best support the care of the child. Service pro-viders view the family as a unit that includes the child, and this unit is the primary focus of care (Coyne et al. 2018). The family unit may include parents, extended family, and/or other caregivers who are determined to be most meaningful and supportive to the child in time of need (Baas 2012). Core attributes of family-centered care include collaboration, evidenced by empowering families to participate in

of family-centered care include collaboration, evidenced by empowering families to participate in care by building partnerships that provide dignity and respect; communication, evidenced by honest and open information-sharing, providing choices, and including families in shared decision-making; negotiation, evidenced by educating and building family confidence in care, sharing expectations of roles and responsibilities with family, and assessing fami-lies’ needs to provide care that is holistic

and responsibilities with family, and assessing fami-lies’ needs to provide care that is holistic and individualized; and support, evidenced by provid-ing care that is appropriate to the cultural and social context of the family, including formal and informal support (Coyne et al. 2018). Family-centered care is mutually beneficial for the child, family, and service providers. Research has shown that family-centered care leads to improved health outcomes, decreased health-care costs, more

that family-centered care leads to improved health outcomes, decreased health-care costs, more effective allocation of resources, and increased child, family, and staff satisfaction (American Academy of Pediatrics 2012). Youth on the autism spectrum who receive family-centered care are also more likely to experience successful transition from pediatric to adult pri-mary care (Rast et al. 2018). Families experience increased coping, adjustment, confidence, and competence as caregivers and

Families experience increased coping, adjustment, confidence, and competence as caregivers and decision-makers when family-centered care is utilized. Inclusion of the child as developmentally appropriate encourages the child to take responsibility for his or her own health and assist with transition to adult services (American Academy of Pediatrics 2012; Christon and Myers 2015). In the care of children on the autism spectrum, families are constant in the child’s life and there-fore can provide

on the autism spectrum, families are constant in the child’s life and there-fore can provide a unique perspective and infor-mation to service providers who transition in and out of a child’s life when planning, delivering, and evaluating interventions. Including families in creating goals of care and incorporating family-centeredness throughout care is a particularly effective tool in managing medical concerns for children on the autism spectrum.

See Also ▶Culture and Autism ▶Interdisciplinary Team  Family-Centered Practice ▶Family-Centered Care, Second Edition  Family-Centered Programming ▶Parent-Professional Partnership  Fanatrex ▶Gabapentin  FAST (Functional Assessment Screening Tool) ▶Functional Analysis Screening Tool ▶Functional Assessment Screening Tool (FAST)  FAS-Test ▶Verbal Fluency  FazaClo ▶Clozapine  FBA ▶Functional Behavior Assessment  Fear ▶Anxiety  Febrile Convulsions Synonyms Febrile seizures Definition Febrile

Assessment  Fear ▶Anxiety  Febrile Convulsions Synonyms Febrile seizures Definition Febrile convulsions are a common type of seizure seen in children between the ages of 6 months and 6 years. These seizures are triggered by fever, (temperature > 38 °C) but with no evidence of encephalitis or meningitis or prior history of afebrile seizures. Children who have febrile seizures typi-cally have an acute intercurrent viral or bacterial illness such as an ear infection or sinus infection. The

an acute intercurrent viral or bacterial illness such as an ear infection or sinus infection. The seizures are not associated with any systemic metabolic abnormalities such as hypoglycemia. Febrile seizures are commonly categorized as simple or complex. Simple febrile seizures last less than 15 min (typically only last a minute or two) and have no focal features. Two or more simple febrile seizures can occur in succession, but the total duration of the seizures should be less than 30 min. A

can occur in succession, but the total duration of the seizures should be less than 30 min. A “complex” febrile seizure is one that has focal features, may last more than 15 min, or, when they occur in a series, may last more than 30 min. Rarely, febrile seizures can present with status epilepticus. Febrile seizures are a type of “provoked sei-zure.” Seizures can also be “provoked” or “trig-gered” by head injury or withdrawal from medications.

See Also ▶Electroencephalogram (EEG) ▶Epilepsy ▶Seizures  Febrile Seizures ▶Febrile Convulsions  Fecal Impaction ▶Constipation  Fecal Incontinence ▶Encopresis  Federal Rules of Evidence Definition In General The Federal Rules of Evidence are the rules governing the admissibility of evidence at civil and criminal trials in federal courts. The Federal Rules of Evidence generally comprise a set of restraints that the courts place on lawyers in an attempt to manage the risks associated with the

restraints that the courts place on lawyers in an attempt to manage the risks associated with the adversarial process in a trial setting. The Federal Rules of Evidence were adopted in 1975, and as of 2009, 42 states had adopted codes based on the federal model.

Admission of Relevant Evidence Federal Rule of Evidence 402 provides for the admissibility of relevant evidence unless the rule provides otherwise. Federal Rule of Evidence 403 gives the trial judge discretion to exclude relevant evidence where its probative value is substantially outweighed by the danger of unfair prejudice, confusion of the issues, or misleading the jury, or by considerations of undue delay, waste of time, or needless presentation of cumu-lative evidence. Because exclusion

of undue delay, waste of time, or needless presentation of cumu-lative evidence. Because exclusion occurs only where the probative value is “substantially outweighed,” the rule favors admissibility.

Witness Federal Rule of Evidence 601 serves the purpose of removing a considerable number of the com-mon law grounds for disqualifying witnesses. In particular, a section of Federal Rule of Evidence 601 states that “[e]very person is competent to be a witness except as otherwise provided in these rules.” Federal Rule of Evidence 602 requires that before a witness can testify, evidence must sup-port that the witness has personal knowledge and memory of the matter. Thus, one may not testify to

that the witness has personal knowledge and memory of the matter. Thus, one may not testify to knowledge obtained from what others told them.

Expert Witnesses Under Federal Rule of Evidence 702, only experts may testify on matters that are scientific, techni-cal, or specialized in nature. In Daubert v. Merrell Down Pharmaceuticals, the Supreme Court held that (1) “general acceptance” is not necessary precondition to admissibility of scientific evi-dence under Federal Rule of Evidence and (2) under the Federal Rules of Evidence, the trial judge is assigned the task of ensuring that any and all scientific testimony or evidence admitted

judge is assigned the task of ensuring that any and all scientific testimony or evidence admitted is not only relevant but reliable. In Daubert and similar cases, the United States Supreme Court set forth a number of factors to consider in determining whether to admit expert testimony under Federal Rule of Evidence 702. These factors are neither exclusive nor dispositive. For instance, the US Supreme Court stated in Daubert that courts may consider whether the theory or technique employed by the

Court stated in Daubert that courts may consider whether the theory or technique employed by the expert is generally accepted in the scientific community, whether it has been sub-jected to peer review and publication, whether it can be and has been tested, whether the known or potential rate of error is acceptable, and the exis-tence and maintenance of standards and controls.

Sources Daubert v. Merrell Dow Pharmaceuticals, Inc., 509 U.S. 579 (1993). Federal Rules of Evidence (As amended to December 1, 2011) Federal Rule of Evidence 402. General Admis-sibility of Relevant Evidence Relevant evidence is admissible unless any of the following provides otherwise *   the United States Constitution *   a federal statute *   these rules; or *   other rules *   prescribed by the Supreme Court.  Federal Rule of Evidence 403. Excluding Rel-evant Evidence for Prejudice,

by the Supreme Court.  Federal Rule of Evidence 403. Excluding Rel-evant Evidence for Prejudice, Confusion, Waste of Time, or Other Reasons

The court may exclude relevant evidence if its probative value is substantially outweighed by the danger of one or more of the following: unfair prejudice, confusing the issues, misleading the jury, undue delay, wasting time, or needlessly presentating of cumulative evidence.

Federal Rule of Evidence 601. Competency to Testify in General Every person is competent to be a witness unless these rules provide otherwise. But in a civil case, state law governs the witness’s compe-tency regarding a claim or defense for which state law supplies the rule of decision.

Federal Rule of Evidence 602. Need for Per-sonal Knowledge Awitness may testify to a matter only if evidence is introduced sufficient to support a finding that the witness has personal knowledge of the matter. Evi-dence to prove personal knowledge may, consist of the witness’ own testimony. This rules does not apply to a witness's export testimony under rule 703

Federal Rule of Evidence 702. Testimony by Expert Witnesses A witness who is qualified as an expert by knowledge, skill, experience, training, or educa-tion may testify in the form of an opinion or otherwise, if: (a) the expert's scientific, technical, or other specialized knowledge will help the trier of fact to understand the evidence or to determine a fact in issue (b) the testimony is based on suffi-cient facts or data; (c) the testimony is the product of reliable principles and methods; and

suffi-cient facts or data; (c) the testimony is the product of reliable principles and methods; and (d) the expert has reasonably applied the principles and methods to the facts of the case.

Feedback Error-Related Negativity (fERN) ▶Feedback-Related Negativity  Feedback on Provider Work Performance Synonyms Employee development; Employee performance; Performance reviews for direct care staff; Staff training and development

Definition Refers to the various methods used to encourage personnel working with individuals with autism spectrum disorders to improve the strategies they use in their everyday interactions, teachings, and supports they provide. Though various methods have been tested (Brown et al. 1981; Quilitch 1975), it was found that the most successful method for increasing work performance was a combina-tion of feedback and praise based upon the ability of the staff member to assist the individual under

of feedback and praise based upon the ability of the staff member to assist the individual under their care meet their specific goals/outcomes (Kreitner et al. 1977; Montegar et al. 1977).

See Also ▶Individuals with Disabilities Education Act (IDEA)  Feedback-Related Negativity Synonyms Feedback error-related negativity (fERN); Medial frontal negativity (MFN) Definition The feedback-related negativity or FRN is an electrical brain signal measured with an electro-encephalogram. Detectable at the scalp via the event-related potential (ERP), the FRN occurs when an individual receives external feedback (visual, auditory) indicating that performance is worse than expected in a given

external feedback (visual, auditory) indicating that performance is worse than expected in a given context. Such contexts include monetary loss and feedback about performance in simple games. The FRN occurs approximately 250 ms after feed-back and is typically observed at central to frontal-central scalp regions. The most likely neural generator of the FRN is the anterior cin-gulate cortex (Gehring and Willoughby 2002; Luu et al. 2003).

See Also ▶Anterior Cingulate ▶Cingulate Cortex ▶ERN ▶Error-Related Negativity  Feeding Disorder ▶Pica  Feeding Problems Definition Feeding problems are delays and/or disorders in the development of eating and drinking skills including disordered placement of food in the mouth, difficulty in appropriately manipulating food when it is in the mouth, difficulty chewing, and/or difficulty swallowing (American Speech-Language-Hearing Association 2001). Feeding problems also include deficits in “any

(American Speech-Language-Hearing Association 2001). Feeding problems also include deficits in “any aspect of taking nutritional elements that result in under nutrition, poor growth or stressful mealtimes for children and their caregivers”.

Historical Background In the early 1900s, doctors were cognizant of the fact that behaviors such as vomiting could be a symptom of feeding problems including overfeed-ing or too frequent feeding, medical conditions such as pyloric obstruction, and feeding of improper foods (Lowenburg 1912). By 1935, cli-nicians were addressing feeding problems that occurred as the result of structural anomalies with equipment such as the modified Asepto syringe and medicine dropper. In fact, the Brecht feeder

with equipment such as the modified Asepto syringe and medicine dropper. In fact, the Brecht feeder was specifically developed to assist in feeding infants with structural abnormalities and/or physical and mental handicaps (Hess 1946). Feeding problems began to appear in physicians’ descriptions of developmental disabilities, such as cerebral palsy in the 1950s (Ingram 1954; Perlstein and Barnett 1952). During this time, it was suggested that feed-ing problems be classified into one of two groups:

During this time, it was suggested that feed-ing problems be classified into one of two groups: organic feeding problems and feeding problems in children who are emotionally disturbed and show tension and anxiety (Shwartz 1958). By the 1970s, reports suggested that feeding problems occurred frequently in preschool handicapped children and were a “significant clin-ical entity” (Palmer et al. 1975). However, no sys-tem was consistently being used to classify these difficulties; a problem that

However, no sys-tem was consistently being used to classify these difficulties; a problem that continues to exist today. Feeding problems during this time were attributed to neuromotor dysfunction or physical abnormali-ties. In cases where neuromotor dysfunction and physical abnormalities were ruled out, the feeding problems were determined to have a behavioral cause (Thompson and Palmer 1974). Interventions to address feeding problems included techniques designed to treat feeding problems

Interventions to address feeding problems included techniques designed to treat feeding problems caused by mechanical difficulties (as cited by Thompson & Palmer). These techniques often included position-ing recommendations aimed at facilitating move-ment and/or prescribed exercises to normalize tone and oral sensitivity. Treatment of behavioral feed-ing problems often included psychotherapy, using hunger as a means to motivate the child to eat a specific food and gradually increasing texture as

hunger as a means to motivate the child to eat a specific food and gradually increasing texture as a means to introduce solid foods into a child’s diet, and/or behavioral modification strategies (Benotvin 1970; Bernal 1972; Jones 1982; Thomp-son and Palmer 1974; Palmer et al. 1975). Diagnosis and treatment of feeding problems is still in its infancy. The treatment strategies used during the 1960s and 1970s are similar to those used now (for a review of early strategies, see Palmer et al. 1975).

and 1970s are similar to those used now (for a review of early strategies, see Palmer et al. 1975). One of the most significant changes in treatment of feeding problems since the 1970s is awareness that feeding is a give-and-take experience that relies on both the child and caregiver. Thus, treatment today often includes consideration of child-caregiver interactions dur-ing mealtimes.

Current Knowledge Successful feeding involves (1) acceptance of a wide variety of developmentally appropriate foods and (2) development of motor skills that enable efficient and safe sucking, chewing, pro-pelling, and swallowing. However, normal feed-ing development is not restricted to the physical act of eating. It also includes the successful inte-gration of a range of physical functions and interpersonal relationships. Both physical factors (e.g., integration of swallowing and respiration,

relationships. Both physical factors (e.g., integration of swallowing and respiration, hand-eye coordination, normal posture, and tone development) and social factors (e.g., cultural pat-terns and social factors within a family) influence feeding development (Arvedson and Brodsky 2002). Disruption in one or more of these areas can result in a feeding problem (Bryant-Waugh et al. 2010). Feeding problems are defined as delays and/or disorders in the development of eating and drinking skills. This

are defined as delays and/or disorders in the development of eating and drinking skills. This includes the motor aspects of eating (e.g., difficulty chewing and difficulty swallowing) as well as deficits in taking nutritional elements, which causes poor growth or stressful mealtimes (American Speech-Language-Hearing Association 2001). Feeding problems manifest themselves in a variety of ways, ranging from an inability to swal-low without choking to restricted diets. Approxi-mately 25–40% of infants

from an inability to swal-low without choking to restricted diets. Approxi-mately 25–40% of infants and toddlers are reported to have feeding problems (Reau et al. 1996). Many early feeding problems are transient and resolve without significant clinical intervention (Bryant-Waugh et al. 2010). However, others fail to resolve without intervention. These feeding disorders often have multifactorial causes, which may include structural abnormalities, and a substantial behav-ioral component (Arvedson

which may include structural abnormalities, and a substantial behav-ioral component (Arvedson and Brodsky 2002; Bernard-Bonnin 2006).

A consistent classification system is not yet used for feeding problems. The Diagnostic and Statistical Manual of Mental Disorder-4th Edition (DSM-IV) classifies feeding disorders into three diagnostic categories: feeding disorders, pica, and rumination disorders. However, a number of eat-ing disorders commonly seen in early childhood have no place in the DSM-IV classification sys-tem (Bryant-Waugh et al. 2010). The organic and nonorganic dichotomy has also been used to clas-sify feeding

et al. 2010). The organic and nonorganic dichotomy has also been used to clas-sify feeding problems. Organic feeding problems occur as a result of structural anomalies, neuro-muscular issues, or other known physiological causes (e.g., gastroesophageal reflux), whereas nonorganic feeding problems occur due to disrup-tive environments or have emotional underpin-nings. While this dichotomy is helpful, feeding problems often have more than one cause (for a review, see Burklow et al. 1998). The

feeding problems often have more than one cause (for a review, see Burklow et al. 1998). The American Speech-Language-Hearing Association has adopted a more in-depth classification system (American Speech-Language-Hearing Association 2007). While this classification may prove to be more useful than the organic/nonorganic dichot-omy, it does not address the issue that most children with feeding problems often have multiple diagno-ses (Arvedson and Brodsky 2002) and, as such, may fall under more

often have multiple diagno-ses (Arvedson and Brodsky 2002) and, as such, may fall under more than one category. For exam-ple, organic factors may disrupt the typical devel-opment of eating which results in the development of maladaptive behavioral patterns by the child and/or the caregiver (Burklow et al. 1998).

Given the complexity of many feeding prob-lems, an interdisciplinary approach to addressing these problems is recommended. Interdisciplinary feeding teams may include a speech-language pathologists, developmental pediatrician, otolar-yngologist, gastroenterologist, nutritionist/dieti-tian, occupational therapist, and social worker or nurse. Speech-language pathologists conduct feeding and swallowing evaluations and develop feeding plans. Developmental pediatricians pro-vide diagnoses of

swallowing evaluations and develop feeding plans. Developmental pediatricians pro-vide diagnoses of pediatric and neurodeve-lopmental disabilities and manage overall patient care. Otolaryngologists examine the integrity of the structural mechanisms of swallowing and manage medical and surgical treatment of issues related to drooling, aspiration, and gastroesopha-geal reflux. Gastroenterologists conduct gastroin-testinal evaluations and manage gastrointestinal diseases. The nutritionist/dietitian

gastroin-testinal evaluations and manage gastrointestinal diseases. The nutritionist/dietitian assesses and manages the child’s nutritional needs, and the occupational therapist evaluates the child’s pos-ture, tone, and sensory system. Social workers or nurses coordinate home care and other appoint-ments (Arvedson and Brodsky 2002). Regardless of who is on the team, diagnosis and management of feeding problems follow the same steps: (1) define the feeding and/or swallowing problem, (2) identify

problems follow the same steps: (1) define the feeding and/or swallowing problem, (2) identify etiology(ies), (3) determine appropriate diagnostic tests, (4) plan approach to patient/family, (5) teach about problem, (6) implement treatment, monitor progress, and (7) evaluate progress (Arvedson and Brodsky 2002). Determining the underlying etiol-ogy is a critical aspect of any successful interven-tion program because disturbances in feeding and eating behavior with similar clinical presentations

program because disturbances in feeding and eating behavior with similar clinical presentations may differ in their underlying etiologies and require different interventions (Bryant-Waugh et al. 2010). Certain medical conditions and devel-opmental disabilities are associated with specific feeding problems. Neurological conditions and anatomical anomalies are most often associated with skills deficits such as oral motor delays, whereas medical conditions such as gastroesoph-ageal reflux are most

such as oral motor delays, whereas medical conditions such as gastroesoph-ageal reflux are most often associated with food refusal among children with Down syndrome, autism, and cerebral palsy (Field et al. 2003; Williams et al. 2005).

Feeding programs often have multiple com-ponents. For example, programs may address oral sensorimotor issues and posture and posi-tioning during feeding. Oral sensorimotor pro-grams are designed to address deficits in the structures that support feeding and swallowing. Goals of these programs may include improving jaw, lip, and/or tongue movements; developing coordinated movements of the mouth; and nor-malizing sensory oral experiences during meal-times. Therapy may also be aimed at developing

nor-malizing sensory oral experiences during meal-times. Therapy may also be aimed at developing transitional feeding skills including spoon-feeding, cup-drinking, straw-drinking, and chewing. In addition to targeting skills that directly support feeding, interventionists may also address positioning and posture. Positioning is especially important for children with abnor-mal muscle tone. Management of behavioral feeding problems may focus on weight gain, initiation of oral feedings, weaning

of behavioral feeding problems may focus on weight gain, initiation of oral feedings, weaning from tube feeds, increased oral intake, improved coopera-tion and reduced stress during mealtimes, and/or acceptance of a wider variety of flavors and tex-tures (Arvedson and Brodsky 2002). Because mealtimes offer the opportunity for parent-child interactions, it is important that management of feeding and swallowing problems occurs within the context of social and communicative activi-ties associated

swallowing problems occurs within the context of social and communicative activi-ties associated with mealtime for a parent and child (Arvedson and Brodsky 2002).

Future Directions The field of feeding problems is still in its infancy, especially with regard to feeding and swallowing problems in children (Arvedson and Brodsky 2002). Although research in the area of feeding and typical swallowing and swallowing disorders has increased, continued research is needed. In the field of feeding problems, there are still inconsis-tencies in terminology and the detail of descrip-tion of a number of eating problems, which hampers research. Thus, it is critical that

of descrip-tion of a number of eating problems, which hampers research. Thus, it is critical that an inter-nationally recognized and accepted classification is established to inform clinical interventions for particular disorders and move the field forward (Bryant-Waugh et al. 2010). To date, few research studies have attempted to examine prognosis, course, outcome, and treat-ment response in feeding disorders using a formal, widely accepted classification system. There is little evidence to guide

disorders using a formal, widely accepted classification system. There is little evidence to guide clinical determination of what constitutes a clinically significant feeding problem and to help clinicians distinguish feeding problems that are more serious from those that are likely to be short lived. In order to better assess prognosis and outcome, researchers should employ a set of consistently used standardized assessment measures (Bryant-Waugh et al. 2010). In addition to directly examining

used standardized assessment measures (Bryant-Waugh et al. 2010). In addition to directly examining feeding problems, research should continue to examine the outcomes of feeding assessment and intervention in schools and the overall impact on education. Finally, there needs to be an expansion of education programs focused on delivery of feeding and swallowing services in the school (American Speech-Language-Hearing Association 2007).

See Also ▶Gastrointestinal Disorders and Autism ▶Nutritional Interventions ▶PICA  Feingold Diet Definition Feingold diet is a dietary intervention popularized for symptoms of inattention, impulsivity, and hyperactivity by Benjamin Feingold, M.D., a pedi-atric allergist who clinically observed improvement in behavior in his patients for whom he prescribed dietary restrictions for management of symptoms of allergy in the 1960s. It calls for the elimination of synthetic food colorings and

of symptoms of allergy in the 1960s. It calls for the elimination of synthetic food colorings and synthetic preserva-tives made from petroleum-based products, syn-thetic sweeteners, and foods containing high levels of natural salicylates (related to the chemical compound in aspirin). The Feingold diet eliminates:

*   Synthetic food coloring made from petroleum products (e.g., Red #40; Yellow #5)
*   Synthetic food preservatives made from petro-leum products (e.g., BHT-butylated hydroxytoluene)
*   Foods that may be high in natural salicylates (e.g., apples, almonds, berries, cucumbers, grapes, and oranges, among other fruits and vegetables)

*   Artificial sweeteners (e.g., aspartame) Foods could be reintroduced as tolerated. Later modifications to the diet included removal of the preservatives Sodium Benzoate and BHA (butylated hydroyanisole). While other dietary approaches to hyperactiv-ity have become popular since the initial dissem-ination of the Feingold diet, the additional assertions that sugar, yeast, milk, or other foods result in behavioral change were not part of the Feingold diet.

Historical Background It was initially reported in the 1940s that some foods high in natural salicylates and FD and C Yellow #5 (a food coloring approved for food, drug, and cosmetics) produced similar allergic symptoms. Dr. Feingold was the chief of pediat-rics of Cedar Sinai Medical Center in Los Angeles and subsequently the Chief of Allergy for Kaiser Permanente Medical Center in San Francisco. In 1965, Dr. Feingold prescribed a diet low in foods containing salicylates to a patient with

In 1965, Dr. Feingold prescribed a diet low in foods containing salicylates to a patient with hives whose psychiatric symptoms subsequently improved (Feingold 1985). While he initially called the regimen for management of hyperactiv-ity the K-P Program standing for Kaiser Permanente, it became known in the press as the Feingold diet or program. He clinically observed that the dietary regimen of removal of foods he believed contained high levels of natural salicylates and contained synthetic

removal of foods he believed contained high levels of natural salicylates and contained synthetic food dyes and sweeteners resulted in subjective behavioral improvement in up to 30–50% of his patients. By 1979, he further recommended elimination of syn-thetic preservatives with subjective reports of improvement in 60–70% of his patients. While Dr. Feingold recommended limiting sweets, he at no time recommended elimination of sugar in the diet. His concern was about the additives in processed

time recommended elimination of sugar in the diet. His concern was about the additives in processed foods and recommended that families make treats and sweets from scratch that should be provided as part of a healthy diet. He presented his observations regarding food and food additives and behavior to the American Medical Association in 1973. Much controversy ensued, with small clinical trials both reporting improvement in children on the restricted diet and other studies not being able to

both reporting improvement in children on the restricted diet and other studies not being able to confirm these find-ings (Mattes and Gittelman 1981). The National Institutes of Health convened a consensus devel-opment conference in 1983 to examine the data concerning defined diets and hyperactivity. The expert panel concluded that the data were insuffi-cient to recommend defined diets for the treatment of hyperactivity but allowed that a diet trial could be considered by families after appropriate

of hyperactivity but allowed that a diet trial could be considered by families after appropriate neurobehavioral evaluation and diagnosis took place with consideration of evidence-based options (National Institutes of Health Consensus Development Panel 1983). Since that time, addi-tional studies have been undertaken examining the behavioral effects of component parts of the Feingold diet. Wolraich et al. demonstrated that the artificial sweetener aspartame (Wolraich et al. 1994) does not impact

et al. demonstrated that the artificial sweetener aspartame (Wolraich et al. 1994) does not impact attention. Studies on the effects of synthetic food coloring have been more controversial (reviewed in Schab and Trinh 2004). Synthetic food coloring use is restricted in European countries, but the scientific data have been interpreted to allow for continued use in the USA (Advisory Committee (March 30–31, 2011)). Dr. Feingold’s book – Why is Your Child Hyperactive? – was last published in 1985.

30–31, 2011)). Dr. Feingold’s book – Why is Your Child Hyperactive? – was last published in 1985. The Feingold Foundation maintains an active society to support families who elect to pursue this dietary intervention (www.feingold.org).

Rationale or Underlying Theory The original theory proposed for behavioral improvement with the Feingold diet was related to the elimination of allergens, leading to improved attention, learning, and behavior. Pro-ponents point toward the introduction of increas-ing amounts of artificial flavors and colors in the diets of children as paralleling the increase in diagnosis of Attention Deficit Hyperactivity Dis-order (ADHD). A hypothesis related to inhibition of neurotransmitter uptake of dopamine

Dis-order (ADHD). A hypothesis related to inhibition of neurotransmitter uptake of dopamine by FDC Red #3 was proposed but not confirmed in subse-quent animal and human studies (National Insti-tutes of Health Consensus Development Panel 1983). The lack of documentation of benefit in clinical trials and biologic mechanisms to explain clinical observations impacted the FDA decision to continue to allow synthetic food coloring (Advisory Committee (March 30–31, 2011).

Goals and Objectives The Feingold diet eliminates specific types of foods in the diet reported to be high in natural salicylates and processed foods containing synthetic food colorings, sweeteners, and preser-vatives to promote behavioral improvement in attention, hyperactivity, irritability, and learning. Dr. Feingold managed over 600 of his patients with this approach and reported that up to two-thirds of the children improved. He reported that many children could be taken off of stimulant

two-thirds of the children improved. He reported that many children could be taken off of stimulant medications used to treat symptoms of ADHD once the diet was initiated. Dr. Feingold advised Conners et al. (1976) in the first clinical trial testing his hypotheses. Prospective studies attempted to examine the behavioral effects of the Feingold diet, artificial sweeteners, and/or food dyes and preservatives on the behavior of children in the learning laboratory, the classroom, and the home.

preservatives on the behavior of children in the learning laboratory, the classroom, and the home. Studies were designed to examine both behavioral change with implementation of the diet and the response to double-blind placebo-controlled challenges of specific agents. The stud-ies are difficult to compare because of varied design features and the different goals and out-come measures of the individual studies. Some address only components of the diet (e.g., aspar-tame, specific food dyes). There

studies. Some address only components of the diet (e.g., aspar-tame, specific food dyes). There is no consistency to the dosage of exposure of synthetic food color-ing across studies.

Treatment Participants None of the published studies specifically evalu-ates the utility of the Feingold diet for children with ASD. The studies evaluate children with ADHD, children with symptoms of hyperactivity, and/or community samples. There are several dif-ferent sets of studies that examined components of the Feingold program that all approached identi-fication of the study population in different ways. Many selectively recruited children whose fami-lies made the observation that their

different ways. Many selectively recruited children whose fami-lies made the observation that their child improved behaviorally on the dietary intervention (Schab and Trinh 2004). Because of the difficulty in maintaining a restricted diet and cost of clinical trials, the double-blind placebo-controlled studies were all of relatively small size. Studies that set out to evaluate the effect of the Feingold diet including all four components included the original trial by Conners et al. (1976) that

diet including all four components included the original trial by Conners et al. (1976) that compared 15 children with ADHD to themselves in a 1-month crossover design. A crossover design was used to assess 36 children with hyperactivity without medication by Harley et al. (1978). While not the original Feingold diet, oligoantigenic diets where a few nonprocessed foods are initially permitted then other foods are sequentially added back have been studied more recently (Pelser et al. 2010) in

other foods are sequentially added back have been studied more recently (Pelser et al. 2010) in children with behavioral symptoms. Other studies examined the effects of sucrose or artificial sweeteners like aspartame on behav-ior. Wolraich et al. (1994) demonstrated no effect on cognition or attention from double-blind placebo-controlled challenges of aspartame in 25 typical preschool children and 23 school-aged children who were reported to have behavioral effects with sugar. In another report,

23 school-aged children who were reported to have behavioral effects with sugar. In another report, Wolraich et al. (1995) summarized studies examining the effect of sugar an attention that included a total of 535 children. No significant effect was sustained across studies.

A third set of studies had as their goal the assessment of the behavioral effects of food dyes and preservatives on children. Mattes and Gittelman (1981) reviewed the literature and reported on 11 children with symptoms of ADHD who were recruited as responders to the Feingold diet. A meta-analysis of studies includ-ing 136 participants in randomized double-blind placebo-controlled studies that examined the effects of artificial food coloring was published by Schab and Trinh (2004). McCann et

examined the effects of artificial food coloring was published by Schab and Trinh (2004). McCann et al. (2007) examined the behavioral response to two different concentrations of synthetic food dyes and sodium benzoate in two groups of children: 153 3-year-olds and 144 8- and 3-year-olds drawn from a diverse community sample and not selected for hyperactivity. Lok et al. (2013) compared the effect on attention in 130 8-year-old children in Hong Kong randomized to food coloring, sodium benzoate,

on attention in 130 8-year-old children in Hong Kong randomized to food coloring, sodium benzoate, or placebo delivered by capsule. There was no difference between groups studied. A fourth type of study investigating the effect of increasing the nutritional value of foods pro-vided a large population of public school students that included provision of foods with fewer syn-thetic ingredients (Schoenthaler et al. 1986).

Treatment Procedures The study procedures are varied. Diet introduction and maintenance: Most stud-ies introduced the diet as part of the study or eval-uated children already on the diet. Harley et al. (1978) provided all the foods to the families for the child under study to ensure that the diet was stringently followed. Some studies restricted other medications or supplements the children ingested. None formally analyzed and reported on the dietary sufficiency of the diet consumed or looked

None formally analyzed and reported on the dietary sufficiency of the diet consumed or looked for other nutritional effects on behavior, although several commented on the overall sufficiency of the diet. Dietary exposure to challenges: The studies that used a double-blind placebo-controlled approach to examine the behavioral effect of exposures typically provided a snack or beverage that contained synthetic food coloring, preserva-tive, and/or aspartame at a standard time or times through the

synthetic food coloring, preserva-tive, and/or aspartame at a standard time or times through the day. Some provided for repeat daily exposure for a week or more; others provided single challenges. At least one study examined the effect of time of day. Allowance for washout was not typically addressed and might impact the results of otherwise carefully done trials (Schab and Trinh 2004). Measurement of change in behavior: Outcome measures will be discussed below. The study designs included

of change in behavior: Outcome measures will be discussed below. The study designs included subjective rating scales from par-ents, teachers, and research team members; labora-tory tests of attention and learning; and objective measures of behavior largely in class settings.

Efficacy Information The report of the NIH consensus development panel in 1982 was an accurate summary of the evidence available at that time and remains an appropriate summary of the efficacy information accrued over the subsequent 35 years:
*   There are clinical reports of children whose parents observe that dietary restriction improved symptoms of hyperactivity.

*   The scientific literature overall does not dem-onstrate a statistically significant improvement in attention or hyperactivity as reported by laboratory tasks of inattention and impulsivity, clinician ratings, or teacher ratings with the defined diets that eliminate food dyes and food preservatives or alter the fruit and vege-table composition of the diet.

*   There may be an impact on behavior in parent rating scales related to food dye exposure. It is unknown if this may be related to specific food dyes and preservatives, exposure, and/or age.

*   Aspartame does not impact attention or hyperactivity. *   A defined diet should only be considered after diagnostic evaluation for ADHD and the implementation of educational and behavioral interventions. Families considering a trial of dietary intervention should have adequate information to weigh the potential benefit from conventional medications and should discuss their plan with their health-care provider. Data collection regarding change in target behaviors will help families determine

provider. Data collection regarding change in target behaviors will help families determine if their behavioral goals are met by this intervention.

No controlled trials on the effects of the Feingold Diet have been completed in children with autism spectrum disorders. A recent review of dietary treatments by Millichap and Yee (2012) reiterates that dietary intervention may be pre-ferred by some families but does not have the scientific support to endorse general use.

Outcome Measurement The response to dietary interventions across stud-ies is difficult to compare because different mea-sures were used that capture different aspects of behavioral response. Subjective response as reported by parents: Studies used a variety of parent report measures designed to capture the core symptoms of ADHD: impulsivity, inattention, and motor hyperactivity. The Conners scales have been validated and widely used by researchers studying hyperactivity (Schab and Trinh 2004).

have been validated and widely used by researchers studying hyperactivity (Schab and Trinh 2004). Other investigators compromised the interpretation of their studies by developing their own measures that were not well validated (reviewed in Schab & Trinh). Subjective response as reported by teachers: Teacher reports using the Conner’s scales were common to many studies. This questionnaire is well validated and was widely used in the time period that many of these studies were completed. Schab

validated and was widely used in the time period that many of these studies were completed. Schab and Trinh (2004) point out that teachers often rate children as more hyperactive than parents because of the tasks required during the school day. Laboratory measures of attention and activity: Laboratory measures of vigilance and attention were used in several studies. Tests such as the Conner’s Continuous Performance Test II were used by investigators to provide data on sustained attention and

Performance Test II were used by investigators to provide data on sustained attention and response inhibition on standard tasks that are impacted by inattention, impulsivity, and hyperactivity in children with ADHD. Combination of outcome measures: While most investigators reported on individual mea-sures by examiner, McCann et al. (2007) created a Global Hyperactivity Index to capture the results of the laboratory attention task, classroom obser-vation and rating, and parent rating in a single

of the laboratory attention task, classroom obser-vation and rating, and parent rating in a single score. The participants in their study were not selected for symptoms of hyperactivity and represented a community sample. Measurement of behaviors other than ADHD: Few studies examined behaviors other than those related to attention and hyperactivity. Rowe and Rowe (1994) attempted to capture parent rating of irritability and sleep difficulties which were ele-vated in their report on exposure to

rating of irritability and sleep difficulties which were ele-vated in their report on exposure to food coloring. When parent report data are separated from the data collected by schools and clinicians, exposure to synthetic food coloring may be associated with increased behavioral symptoms (McCann et al. 2007; Schab and Trinh 2004). It may be that behavioral effects other than ADHD core symp-toms are captured in the parent report data.

Qualifications of Treatment Providers The advocates of this diet suggest that there is no harm in the removal of synthetic food colorings and preservatives and artificial sweeteners by the pro-vision of a diet containing fewer processed foods. The Feingold Foundation publishes a list of com-mon products that meet their specifications, so implementation of the diet should be neither expen-sive nor onerous. Removal of a large number of the fruits and vegetables consumed in the American diet might

onerous. Removal of a large number of the fruits and vegetables consumed in the American diet might have a nutritional impact if the necessary nutrients are not consumed in other forms. This has not been investigated. The diet recommends sub-stitution of other foods such as bananas, cashews, and pears that the Feingold Foundationsuggests are lower in natural salicylates. Reading food labels for processed foods for the presence of food dyes and preservatives may be challenging. Families who are

foods for the presence of food dyes and preservatives may be challenging. Families who are considering a trial of dietary intervention should consult with their primary health-care provider. It may be helpful for families to be referred to a Registered Dietitian, a licensed professional with training that helps them understand the nutritional content of foods, for counseling regarding diet change and how to provide an adequate diet if supplemented, processed foods are eliminated. Not all fruits

and how to provide an adequate diet if supplemented, processed foods are eliminated. Not all fruits and vegetables are nutritionally equal, so children with food selectivity might require targeted supplementation. A family considering a dietary intervention might also consult with their child’s educational or behavioral providers to collect data on thebehaviors they wish to change. This may be very helpful in determining if there is a behavioral effect that is clinically significant enough to

very helpful in determining if there is a behavioral effect that is clinically significant enough to continue interven-tion. Since the dietary intervention targets symp-toms of ADHD, formal rating scales for ADHD in use in the school setting could be considered.

See Also ▶Aberrant Behavior Checklist ▶Gluten-Free Diet  Fenfluramine Synonyms Pondimin Definition Fenfluramine is a drug with an incompletely under-stood mechanism of action. It was originally intro-duced for the treatment of obesity. It promotes the release of serotonin acutely but may have a serotonin-depleting effect over time. Given the replicated finding that at least a subgroup of chil-dren with autism are hyperserotonergic, investiga-tors considered fenfluramine for the treatment of

with autism are hyperserotonergic, investiga-tors considered fenfluramine for the treatment of autism. Side effects were noteworthy. A randomized trial conducted in the mid-1980s showed that fenfluramine was no better than pla-cebo. Since then, fenfluramine was removed from the market in 1997 when there were reports of pulmonary hypertension and damage to heart valves.

See Also ▶Serotonin  Feral Children Definition The term “feral” children is used to refer to chil-dren who are known, or are believed, to have been deprived of contact with other human beings or to have been neglected or treated inhumanely by a human being since infancy. They have had little or no experience of human love or care and no expe-rience of human communication through spoken language. Some are thought to have been reared by animals. Accounts of such children can be found in myths,

Some are thought to have been reared by animals. Accounts of such children can be found in myths, legends, fiction, and in stories believed to be true, though some have turned out to be hoaxes. The relevance for autism spectrum conditions lies in the inability to understand and speak and the odd behavior of many of the chil-dren and young adults, who are known or thought to have been deprived of human love and com-munication in their early years.

Historical Background The accounts of such children in myths, legends, and fiction do not, however, have any link with autism. The legend of Romulus and Remus is one example. They were twin brothers, sons of the god Mars. When very young, they were abandoned by the banks of the river Tiber, but were found by a she-wolf who fed them with her milk and sustained them until they were able to feed them-selves. Later, they were found and given a home and care by a shepherd, and they grew up to be

them-selves. Later, they were found and given a home and care by a shepherd, and they grew up to be strong and clever. They decided to build a city on the place where the shepherd had found them – the legendary origin of the city of Rome. After it was built, they quarrelled over who should be in charge, and Romulus killed Remus. Romulus became King of Rome, which he named after himself. The most famous “feral” characters in fiction are Mowgli and Tarzan. Mowgli was a character in stories written

“feral” characters in fiction are Mowgli and Tarzan. Mowgli was a character in stories written by Rudyard Kipling. Mowgli’s parents were killed by a tiger in the Indian jungle when Mowgli was still a baby. He was found and reared by a mother and father wolf in a pack of wolves. He developed remarkable skills in hunt-ing and tracking. He had close relationships with a black panther and a brown bear and was able to communicate with them. In the end, he returned to human society and had no problems

and was able to communicate with them. In the end, he returned to human society and had no problems communicat-ing in human speech. Tarzan was the fictional character invented by Edgar Rice Burroughs (although it has been suggested that he was influenced by the Mowgli stories). Tarzan’s parents died when he was a year old, and he was adopted by a group of great apes, the mangani, which is a species unknown to sci-ence! Tarzan’s jungle upbringing gave him remarkable abilities, beyond those

species unknown to sci-ence! Tarzan’s jungle upbringing gave him remarkable abilities, beyond those acquired by most human beings. He was strong, agile, and well able to wrestle with all kinds of animals. He learned languages rapidly, including the language of the apes who reared him and other jungle ani-mals and English, French, German, Latin, and ancient Greek, among others. He met and fell in love with a young American woman, Jane, whom he eventually married. They tried living together in

love with a young American woman, Jane, whom he eventually married. They tried living together in England but found civilization hypocritical, so they returned to live in Africa. The stories of Mowgli and Tarzan have been and are enormously popular and have led to many more books, as well as films, DVDs, television programs, and even Disney cartoons. There seems to be something about these stories that people all over the world find endlessly fascinating. How-ever, the fictional pictures of highly

that people all over the world find endlessly fascinating. How-ever, the fictional pictures of highly intelligent, gifted individuals who have learned languages and can communicate with animals and with human beings stand in stark contrast to the known facts concerning real “feral” children. Those in fiction bear no relationship to autism, unlike many of those, who, in real life, in their early years, were deprived of care and love from other human beings (Frith 2003a).

Current Knowledge Another inappropriate use of the term “feral” children is to refer to those who live on the streets of cities. They are also known as “street” children. Such children have been deprived of family care because of neglect, or abuse, or parental death, or abandonment by poor parents who cannot afford to care for them. Large numbers of such children can be found in great cities throughout the world. Professor Martin Patt (2010) has created a website on which it is possible to find

the world. Professor Martin Patt (2010) has created a website on which it is possible to find details of street children in different countries throughout the world. Patt emphasizes that such children can fall under the control of traffickers, who may disfigure the children in order to increase the money they can make by begging. The street children are also vulnerable to sexual abuse. The suggestion of a link with autism is not appropriate especially for those street children who do not fall

of a link with autism is not appropriate especially for those street children who do not fall under the control of criminal adults. Typically, such children form their own gangs, with their own social rules and hierarchies to support each other and survive through various forms of criminal behavior. (See note on Roma-nian street children, Patt (2010) below.) They appear in fiction, for example, as the young pick-pockets organized by Fagin in Charles Dickens’ book “Oliver Twist” or the street

as the young pick-pockets organized by Fagin in Charles Dickens’ book “Oliver Twist” or the street gangs, the “Baker Street Irregulars” who carried out various tasks for Sherlock Holmes in the stories by Sir Arthur Conan Doyle. They are quite different from the isolated child deprived of any human concern, care, and communication.

The children sometimes referred to as “feral,” whose history and behaviors are most relevant for any discussion of autism spectrum conditions, are those who have been deprived of human compan-ionship and loving care for all or most of their infancy and childhood. There are accounts of children who are known or believed to have been kept in

have additional educational needs, and some of them may need one-to-one help much of the time (Adab et al. 2001). Many studies have shown that children exposed to AEDs such as carbamazepine, phenytoin, and even the newer drug, lamotrigine, have an IQ in the normal range (Gaily et al. 2004; Mawer et al. 2002; Dean et al. 2002; Meador et al. 2011). However, the verbal IQ of individuals with valproate exposure appears to be significantly lower (Adab et al. 2004).

**Behavioral problems** Autistic spectrum disorders have been reported more frequently with valproate exposure (Rasalam et al. 2005). Difficulty in developing peer relationships, sharing interests and enjoyment, using language in social communication, symbolic or imaginative play, changes to routine, and lack of emotional or social reciprocity have been reported commonly. Poor concentration and hyperactivity are other behavioral issues reported.

**Prognostic factors** Several factors influence the severity of FACS: (1) Type of AED – Valproate exposure causes the most severe adverse effects. (2) Number of AEDs – Polytherapy (exposure to more than one AED) has a worse outcome than exposure to monotherapy (one AED). (3) Dose of the drug – Although the adverse effects have not been found to be dose related with exposure to other AEDs, exposure to ≥ 1,000 mg/day of valproate has been associated with more severe problems. Specific

exposure to ≥ 1,000 mg/day of valproate has been associated with more severe problems. Specific dose-related features of valproate are neural tube defects, radial ray abnormalities, obviously dysmorphic face, and a reduction in verbal IQ (Kini 2006). (4) Time of exposure – First trimester exposure is associated with structural abnormalities. It is possible however that AED exposure through the second and third trimesters may have an effect on neurodevelopment as the brain continues to grow

second and third trimesters may have an effect on neurodevelopment as the brain continues to grow throughout the pregnancy. (5) Parental and environmental factors – The child’s IQ is known to strongly correlate with the parental IQ and also with the socioeconomic status. Women with epilepsy may themselves have learning difficulties, contributing further to the phenotype. (6) Genetic factors – The teratogenic effects of AEDs differ between fetuses that have been exposed to the same dose of the

teratogenic effects of AEDs differ between fetuses that have been exposed to the same dose of the same drug suggesting that maternal genetic factors may contribute. Studies have shown the contribution of genetic factors such as MTHFR (Kini et al. 2007), epoxide hydrolase genes, etc.

**Clinical Expression and Pathophysiology** The clinical expression of FACS is very variable. The full spectrum of problems, i.e., dysmorphic facial features, major and minor malformations, developmental delay, childhood medical problems, learning difficulties, and behavioral problems, is rarely seen in a single individual with prenatal AED exposure. The presence of specific dysmorphic facial features may be a clue to early diagnosis. However, the facial gestalt is usually obvious in the most

may be a clue to early diagnosis. However, the facial gestalt is usually obvious in the most severely affected patients only. In fact, the facial features with exposure to some AEDs such as carbamazepine are very mild, adding to the difficulty of making a conclusive diagnosis. In addition, some individuals may present with subtle dysmorphic features and neurodevelopmental problems only. In these individuals, a diagnosis of “fetal anticonvulsant effects” should be considered.

**Mechanisms of Teratogenicity** The exact mechanism by which AEDs cause their teratogenic effects is not known. Several plausible theories have been proposed:

1.  **Folic acid deficiency:** AEDs such as phenytoin, phenobarbitone, and carbamazepine interfere with the intestinal absorption of folic acid, while valproate acts on its metabolism. Embryonic folic acid deficiency may disrupt gene expression, increase oxidative stress, and cause changes in protein synthesis (Wegner and Nau 1992). In animal studies, the rate of neural tube defects was reduced in mice exposed to valproate, when high doses of folic acid and folinic acid were given. Alteration

in mice exposed to valproate, when high doses of folic acid and folinic acid were given. Alteration in expression of folate pathway genes has been demonstrated in mice following valproate exposure (Finnell et al. 1997). Certain genetic polymorphisms in the folate pathway (C677T in the MTHFR gene) have been shown to be associated with a higher rate of malformations in AED-exposed children (Kini et al. 2007).

2.  **Oxidative stress:** Intermediate metabolites of AEDs may increase oxidative stress in the developing embryo, whose antioxidant defense mechanism is immature. This may damage the developing organs of the embryo. Embryonic oxidative stress due to free radical formation following phenytoin-induced embryonic bradycardia has been demonstrated in animal studies.

3.  **Arene oxide intermediates:** Reactive intermediate metabolites of AEDs such as phenytoin and carbamazepine in the form of arene oxides may bind cell macromolecules affecting cell function and causing cell death. Arene oxides are detoxified by epoxide hydrolases; genetic variability in the activity of these enzymes may influence the susceptibility of the fetus to the adverse effects.

4.  **Histone deacetylase inhibition:** Valproate is a potent histone deacetylase inhibitor. Histone deacetylases are enzymes that induce chromatin changes to enable transcription of genes. Histone deacetylase inhibition therefore leads to interruption in the cell cycle, growth arrest, and apoptosis (cell death). Valproate also causes demethylation of DNA which results in changes in gene expression and hence in congenital malformations.

**Evaluation and Differential Diagnosis** FACS is a difficult diagnosis to make as it is a diagnosis of exclusion. There are no specific tests by which the diagnosis of FACS can be confirmed. Hence, basic tests such as karyotyping, fragile X syndrome, and urine metabolic tests should be offered to the patients to rule out other causes. Other fetal insults such as exposure to alcohol, toluene, and maternal diabetes may cause similar features as FACS and should be kept in mind while taking the

maternal diabetes may cause similar features as FACS and should be kept in mind while taking the medical history. Malformations related to specific drug exposure such as radial ray defects and trigonocephaly with valproate exposure may give a more definitive diagnosis, but other dysmorphic syndromes such as Baller-Gerold syndrome which have similar features need to be ruled out. This differentiation is important as it will impact on the recurrence risk given to these families. Referral to a

is important as it will impact on the recurrence risk given to these families. Referral to a clinical geneticist is therefore recommended. In those with a history of AED exposure, who present mainly with behavioral problems such as autistic spectrum disorder, evaluation for other syndromes such as Rett syndrome, tuberous sclerosis, and fragile X syndrome should be considered.

**Treatment**  **Management** The management of FACS is symptomatic. Specific structural abnormalities, such as heart defects, kidney abnormalities, etc., may need monitoring, medication, or surgical intervention. Children with developmental delay may need help in the form of physiotherapy, speech and language therapy, and occupational therapy. Surveillance for childhood medical problems such as myopia and recurrent otitis media is recommended. Assessment for special educational needs should

myopia and recurrent otitis media is recommended. Assessment for special educational needs should be carried out early and appropriate help instituted early to allow the child to develop to his or her full potential. Behavioral therapy and sometimes medication may be helpful in dealing with behavioral issues such as autistic spectrum disorder and attention deficit/hyperactivity disorder.

**Prevention** For women with epilepsy, prepregnancy counseling should be provided so as to reduce the risk of FACS. Every attempt should be made to reduce the dose (e.g., valproate should be reduced to <1,000 mg/day) and number of AEDs to the minimal level required to control the epilepsy, and this should be done in liaison with the neurologist. Monotherapy is preferable to polytherapy. Valproate should be avoided wherever possible as this has been deemed to be the most teratogenic AED (Mawer

should be avoided wherever possible as this has been deemed to be the most teratogenic AED (Mawer et al. 2002). The weaning of the AED should be done well in advance of the pregnancy as seizures during pregnancy may have a detrimental effect on the health of the mother and baby. High-dose folic acid (4–5 mg/day) is recommended during pregnancy, starting from at least 6 weeks prior to conception. While intake of folic acid in the first trimester may help prevent congenital malformations, intake

While intake of folic acid in the first trimester may help prevent congenital malformations, intake in the last two trimesters may help prevent neurodevelopmental problems due to continued development of the fetal brain throughout pregnancy. Antenatal scans should be offered at about 12 weeks (gross structural abnormalities such as anencephaly can be identified) and a detailed anomaly scan should be offered at 18–20 weeks. Malformation such as isolated cleft palate is likely to be missed on

be offered at 18–20 weeks. Malformation such as isolated cleft palate is likely to be missed on antenatal scans.

**Fetal Antiepileptic Drug Syndrome (Fetal AED Syndrome)**  **Fetal Carbamazepine Syndrome**  **Fetal Phenytoin Syndrome**  **Fetal Valproate Syndrome (FVS)**  **Fidelity of Implementation**  **Figurative Language** Maura Moyle and Claire Plowgian Speech Pathology and Audiology, Marquette University, Milwaukee, WI, USA  **Synonyms** Figures of speech; Metaphoric language; Nonliteral language  **Definition** Figurative language is language that is used in nonliteral ways in order to achieve a

Figurative language is language that is used in nonliteral ways in order to achieve a special effect or meaning. Similes, metaphors, idioms, proverbs, and slang are examples of figurative language. The ability to comprehend and produce nonliteral language is an important development in school-age children. Figurative language is commonly used in a variety of communicative contexts, including casual conversation, teacher talk, and written texts. Individuals with autism spectrum disorders (ASD)

conversation, teacher talk, and written texts. Individuals with autism spectrum disorders (ASD) often have difficulty comprehending figurative language and may interpret figurative statements literally. Upon hearing the expression “It’s raining cats and dogs,” an individual with ASD may think that the speaker means that cats and dogs are literally falling from the sky. The meaning and appropriate use of figurative language may need to be explicitly taught to individuals with ASD. Difficulties

use of figurative language may need to be explicitly taught to individuals with ASD. Difficulties with figurative language are common in individuals with a variety of disorders (e.g., Specific Language Impairment, Attention Deficit Hyperactivity Disorder).

**Figure-Ground Discrimination** Francesca Happé MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

**Definition** Figure-ground discrimination or perception refers to the ability to separate the elements of a visual image on the basis of contrast (e.g., light, dark), to perceive an object (figure) against a background (ground). A classic illustration of figure-ground perception is the Rubin vase, a simple black and white image which can be seen as two dark faces against a white background, or a white vase against a dark background. As well as simple properties, such as light and dark, more

a white vase against a dark background. As well as simple properties, such as light and dark, more complex gestalt properties help separate the important objects in a scene from the background. The ability to discriminate figure from ground can also refer to the more general capacity to tell foreground from background information, or identify what is important versus what is less salient. In ASD, superior ability is seen in some tasks requiring identification of parts within wholes, such as the

superior ability is seen in some tasks requiring identification of parts within wholes, such as the Embedded Figures Task. This has been interpreted within theories postulating a detail-focused cognitive style in ASD, such as the “weak central coherence” account. Ambiguous figures (e.g., duck/rabbit), of which the Rubin vase may be considered an example, have been used in autism research to investigate flexibility and also self-awareness. Findings are mixed; whether people with ASD show

investigate flexibility and also self-awareness. Findings are mixed; whether people with ASD show neurotypical patterns of processing ambiguous figures depends in part on whether this is tapped through explicit or implicit tasks (e.g., Allen and Chambers 2011). Links have also been found between ASD-like traits and the perception of multiple interpretations of ambiguous figures, perhaps reflecting figure-ground discrimination processes (Best et al. 2008).

**Figures of Speech**  **Financial Aid**  **Fine Motor Development** Jane Case-Smith Division of Occupational Therapy, School of Health and Rehabilitation Sciences, Columbus, OH, USA

**Definition** Fine motor skills are also termed hand skills, fine motor coordination, object manipulation, or dexterity. Components of fine motor development include reach, grasp, release, in-hand manipulation, and bimanual coordination (Exner 2010). Early development of these skills requires integration of the visual motor and somatosensory systems. Fine motor skills initially develop through the infant’s sensory motor exploration, e.g., the infant’s reach and grasp of objects. They are

the infant’s sensory motor exploration, e.g., the infant’s reach and grasp of objects. They are refined as the young child develops functional and pretend play skills that include manipulation, eye-hand coordination, and bimanual skill. In older children and adults, fine motor development involves learning the precise, complex sequences of movement required to perform writing, keyboarding, activities of daily living, leisure pursuits, and vocational tasks. Delays or disorders in fine motor

of daily living, leisure pursuits, and vocational tasks. Delays or disorders in fine motor development can relate to low muscle tone or poor strength; impairment in visual motor skills, bimanual coordination, or precision of manipulation (dexterity); and motor learning deficits or dyspraxia (motor planning problems).

**Historical Background** In the past, researchers and practitioners did not broadly recognize that children with ASD have impaired fine motor development. The few studies that included motor development noted that motor skills were a strength in some children, particularly when compared to cognitive and communication skills (Gillberg et al. 1990; Mayes and Calhoun 2003). Using parent report of motor development, Mayes and Calhoun found that 67% of their sample with ASD had normal motor

of motor development, Mayes and Calhoun found that 67% of their sample with ASD had normal motor milestones. Early research highlighted the exceptional manipulation skills of certain individuals with ASD, e.g., savants (Hermelin et al. 1994). Contributing to the confusion about whether or not children with ASD have fine motor impairment, a number of studies found that the motor development of children with ASD was similar to that of children with general developmental delay (Provost et al.

children with ASD was similar to that of children with general developmental delay (Provost et al. 2007), learning disabilities (Miyahara et al. 1997), or language delays (Landa and Garrett-Mayer 2006). One interpretation of these findings is that fine motor delays may reflect general developmental disability rather than define a core feature of ASD. More recent literature confirms that fine motor impairments are not only prevalent in ASD but are long lasting and persistent, affecting function

impairments are not only prevalent in ASD but are long lasting and persistent, affecting function throughout the lifespan (Vanvuchelen et al. 2011).

**Current Knowledge**  **Prevalence** Recent studies and systematic reviews have estimated the extent and prevalence of fine motor delay and motor coordination impairment in children with ASD. Ming, Brimacombe, and Wagner (2007) found high prevalence of motor impairment in a cohort of 154 children with ASD. In young children 2–6 years, 63% exhibited hypotonia, and in children 7–18 years, 38% exhibited hypotonia. Motor planning problems, i.e., Dyspraxia were common (34%) in this cohort. When

hypotonia. Motor planning problems, i.e., Dyspraxia were common (34%) in this cohort. When prevalence was examined using clinical data from standardized motor development scales, 63–68% of a sample of children with ASD had significant motor delays of more than 25% (Provost et al. 2007). Eighty-four percent of the children demonstrated at moderate fine motor delays. Although the fine motor skills of the young children in this sample were significantly lower than the typical children and the

of the young children in this sample were significantly lower than the typical children and the normative sample, their performance was similar to a comparison sample of children with developmental disabilities. This finding that motor skill development of children with ASD is similar to children with other developmental disabilities is consistent across studies (e.g., Bhat et al. 2011; Landa and Garrett-Mayer 2006). Using rigorous meta-analysis techniques with 83 studies of motor coordination

Garrett-Mayer 2006). Using rigorous meta-analysis techniques with 83 studies of motor coordination in ASD, Fournier, Hass, Naik, Lodha, and Cauraugh (2010) examined 51 comparisons of children with ASD to typically developing peers. The standardized mean difference in motor coordination was substantial with an average effect size of 1.2. Given these robust findings, Fournier et al. (2010) concluded that motor coordination deficits are a cardinal feature of ASD.

**Infants and Young Children** Beginning in the late 1990s, researchers who analyzed videotapes of infants later diagnosed with ASD reported that the infants showed fine motor differences and stereotypic arm movements (Adrien et al. 1993; Baranek 1999). These retrospective studies revealed that at young ages, children exhibit deficits in specific movement patterns, hypotonia, hypoactivity, and aberrant motor patterns. These retrospective studies motivated researchers to complete prospective

aberrant motor patterns. These retrospective studies motivated researchers to complete prospective studies to examine fine motor skills in young children at risk for ASD (Bryson et al. 2007; Gernsbacher et al. 2008; Landa and Garrett-Mayer 2006). Prospective studies of infants and toddlers at risk for ASD suggest that motor characteristics may provide a reliable early sign of ASD. When compared to the manual skills of a typically developing sample, those of children later diagnosed with ASD

to the manual skills of a typically developing sample, those of children later diagnosed with ASD were significantly delayed (Gernsbacher et al. 2008). At 6 months, the infants were less skilled in reaching and grasping of objects, and at 12 months, they were significantly less skilled in stacking, scribbling, and banging. At 18 and 24 months, the toddlers were deficit in the fine motor skills important to communication (pointing) and play (using puzzles and blocks). Although this study

important to communication (pointing) and play (using puzzles and blocks). Although this study identified motor delays in the youngest age groups (6 and 12 months), other studies have reported that significant differences in fine motor skills among children with ASD do not emerge until 14 months (Landa and Garrett-Mayer 2006). As an early sign of ASD, motor delays or atypical movement patterns can contribute to its early identification. In preschool age children, 3–4 years, Jasmin et al. (2009)

contribute to its early identification. In preschool age children, 3–4 years, Jasmin et al. (2009) found that 53% had fine motor delays. The mean fine motor composite score and mean scaled scores for the children with ASD were below the normal range, suggesting moderate fine motor impairment. These studies conclude that young children with ASD exhibit mild to moderate delays in fine motor skill and estimate that between 53% and 84% of all children with ASD have fine motor delays or problems.

and estimate that between 53% and 84% of all children with ASD have fine motor delays or problems. Based on the assumption that movements (e.g., gestures, oral motor skills, motor imitation) are fundamental to social interaction, researchers (Bhat et al. 2011) suggest that motor impairments may negatively influence children’s acquisition of social and communication skills. The correlation of fine motor skills to development of social interaction and communication proficiency needs to be further

motor skills to development of social interaction and communication proficiency needs to be further researched to confirm or refute this hypothesis.

**Older Children and Adolescents** Older children and adults with ASD, 7–32 years, have shown impairment in visual motor and manual dexterity tasks (Bhat et al. 2011; Green et al. 2002). When fine motor skills of older children with ASD were compared to children with learning disabilities (LD), they were lower in manual dexterity such as manipulation, drawing, and cutting (Miyahara et al. 1997). Manjiviona and Prior (1995) found that children, 7–17 years with Asperger’s syndrome (AS) and

Manjiviona and Prior (1995) found that children, 7–17 years with Asperger’s syndrome (AS) and high-functioning autism (HFA), demonstrated motor impairment in manual dexterity, including speed and accuracy of hand movement, eye-hand coordination, and bimanual coordination. They also demonstrated more movement errors. Hilton et al. (2007) found that children with Asperger’s syndrome scored below the mean on a standardized assessment of motor skill. These findings are consistent with others who

the mean on a standardized assessment of motor skill. These findings are consistent with others who found a slower reaction time in skilled motor tasks (Mostofsky et al. 2000). They suggest that children with AS and HFA have difficulty with motor learning and motor planning. Children with ASD often demonstrate poor handwriting legibility. When children with ASD were compared to typically developing children on a standardized handwriting assessment, the children with ASD had significantly lower

children on a standardized handwriting assessment, the children with ASD had significantly lower legibility. Specifically, they showed impairments in forming letters, leading to lower overall quality and legibility (Fuentes et al. 2009). One contributing factor to learning legible handwriting is using a consistent preferred hand to write. Frequently, children with ASD are delayed in establishing hand dominance and show mixed laterality or left-hand dominance. Hauck and Dewey (2001) found that

hand dominance and show mixed laterality or left-hand dominance. Hauck and Dewey (2001) found that children with ASD often do not establish hand dominance and that this lack of preference was not related to cognitive level or lack of motor skills. Studies from the 1980s found that 22–36% of children with ASD do not show a hand preference at ages that hand dominance should be established. These studies suggest that precision of manipulation, quality of movement, and movement speed are lower in

suggest that precision of manipulation, quality of movement, and movement speed are lower in older children with ASD, and these differences can occur in children across the spectrum. The research literature suggests that the majority of children with ASD have significant motor delays or deficits and that these deficits can limit daily living skills, play, communication, and peer interaction.

**Motor Imitation** Motor imitation is fundamental to learning and is important to both social and cognitive development (McDuffie et al. 2007). Motor skills are also learned, in part, through a child’s imitation of others, i.e., attending to another person’s movement and then repeating that movement. The child’s goal may be social interaction or may be self-motivated imitation and mastery. Children with ASD have impairments in imitation that are believed to be core to their social impairment

with ASD have impairments in imitation that are believed to be core to their social impairment (Rogers et al. 2003; Stone et al. 1997). Because these children imitate less, they may have less practice of age-appropriate motor skills. On the other hand, fine motor delays may be a reason that children exhibit limited motor imitation. When a sample of children with Asperger’s syndrome (AS) were compared to a matched sample of children with developmental motor delays, the children with AS had

compared to a matched sample of children with developmental motor delays, the children with AS had difficulty imitating gestures, particularly when the gesture required symbolic representation of an object (Green et al. 2002). Motor performance using a standardized test accounted for 45% of the variance in imitation performance. In further investigation of motor imitation, Vanvuchelen, Roeyers, and deWeerdt (2011) reported that boys with ASD had problems in motor imitation, whether or not they

deWeerdt (2011) reported that boys with ASD had problems in motor imitation, whether or not they had cognitive impairment. They concluded that the motor imitation problems were more related to general motor competence than executive function. McDuffie et al. (2007) examined the correlates of motor imitation in children with ASD. They investigated the relationship of attention-following and nonimitative fine motor ability to motor imitation. Both fine motor ability and attention-following

nonimitative fine motor ability to motor imitation. Both fine motor ability and attention-following accounted for unique variance in motor imitation performance. Whether impaired imitation is a cause or result of lower fine motor skill, it likely relates to and influences fine motor development. Mostofsky et al. (2006) further clarified that motor imitation appears to be delayed but not disordered in children with ASD. Therefore, the delay in acquisition can catch up during late childhood.

in children with ASD. Therefore, the delay in acquisition can catch up during late childhood. Previously reported cross-sectional studies of motor development noted that motor delays are common in young children with ASD and less prevalent in older children.

**Motor Planning** Motor planning or praxis is the ability to plan and sequence novel or unpracticed movements to reach a goal. A number of studies have identified apraxia or motor planning problems in children with ASD. Using kinematic analysis for reaching, Forti et al. (2011) found that children with ASD were slower in planning their movements and needed to reorient their hand as they reached toward a target. They required more self corrections to accurately reach the target, indicating

toward a target. They required more self corrections to accurately reach the target, indicating less automaticity and slower processing. These findings concur with Rinehart et al. (2001) who found that children with ASD are slow to prepare movement and have impaired anticipatory guidance. When children with ASD were tested specifically on praxis, e.g., using gestures and tools, they made significantly more errors than children who were typically developing (Mostofsky et al. 2006). This study

more errors than children who were typically developing (Mostofsky et al. 2006). This study confirmed earlier findings that high-functioning children with ASD have impaired performance of gestures and problems in motor planning of precise movements (Rogers et al. 1986). Motor planning deficits appear to relate to perception of kinesthetic/spatial aspects of movement (i.e., sensory feedback) and planning of goal-directed actions (Mostofsky et al. 2006). These authors concluded that children with

of goal-directed actions (Mostofsky et al. 2006). These authors concluded that children with ASD can have deficits in conceptual planning or learning of movement. Praxis problems or dyspraxia implies that a child has a distinct impairment in planning movement that cannot be accounted for by impaired motor execution or a general movement disorder. To analyze if children with ASD have basic motor skill deficits or dyspraxia, Dziuk et al. (2007) measured performance on a praxis test and on a basic

deficits or dyspraxia, Dziuk et al. (2007) measured performance on a praxis test and on a basic motor skill assessment in a sample of children with ASD, aged 8–14 years. They found that basic motor skill had a significant effect on praxis performance. Although basic motor skills and dyspraxia in ASD were related, the dyspraxia could not be entirely accounted for by basic motor skill deficits. These authors concur with Mostofsky et al. (2006) that praxis deficits in ASD relate to children’s

These authors concur with Mostofsky et al. (2006) that praxis deficits in ASD relate to children’s perception of sensory feedback from movement, spatial representation of movement, and ability to learn movement.

**Stereotypic Movements** In addition to motor delays and motor planning problems, children with ASD may exhibit abnormal movement or motor stereotypies. These include arm flapping or finger flicking and are characterized as repetitive, seemingly nonpurposeful movements (Bhat et al. 2011). Retrospective studies of children with ASD have found that toddlers exhibit atypical hand and finger movements and more stereotypical object play, such as spinning objects. These repetitive movements may

and more stereotypical object play, such as spinning objects. These repetitive movements may interfere with motor development or may create a propensity for stereotypic movements through adulthood (Matson et al. 2009). These motor stereotypies are believed to relate to sensory processing and may serve to lower or raise arousal. Repetitive movements are also associated with lower levels of overall functioning. Cuccaro et al. (2003) found that children use stereotypic movements for sensory

functioning. Cuccaro et al. (2003) found that children use stereotypic movements for sensory stimulation or as an adaptive function to cope with transitions or changes in the environment. In general, stereotypic movements appear to decrease with age. When useful to support a person’s arousal level or ability to cope, stereotypic or repetitive movements may serve an adaptive, functional purpose.

**Summary** Fine motor skills are fundamental to social skills and communication and are an important consideration when remediating the core deficits of ASD. A majority of children with ASD have delays in fine motor development, and motor impairments tend to continue through adulthood (Fournier et al. 2010). Fine motor delays are more apparent in young children than in older children, suggesting that motor learning is a factor. Although the severity and prevalence of fine motor deficits

that motor learning is a factor. Although the severity and prevalence of fine motor deficits appear to improve as children with ASD reach adulthood, motor coordination and motor planning impairments persist. Fine motor development is among the variables that significantly influence function in children with ASD. Underlying motor delays can impair a child’s ability to gesture, imitate, manipulate toys, and participate in social play. In older children, motor planning and motor coordination

toys, and participate in social play. In older children, motor planning and motor coordination problems can relate to poor handwriting, school difficulties, and limited participation in sports and recreation. In adults, the fine motor deficits can restrict vocation or leisure pursuits. Researchers recommend that comprehensive intervention programs for persons with ASD include specific strategies to improve fine motor skills (Bhat et al. 2011; Fournier et al. 2010).

**Future Directions** Recent studies of children and adolescents with ASD suggest that they present with motor learning and motor planning impairments. It is not clear how the fine motor and motor coordination impairments relate to the cognitive features of ASD. Research is needed to better understand motor skill development and to further analyze how imitation, praxis, and motor learning influence fine motor performance. With increased understanding of the basis for fine motor deficits,

fine motor performance. With increased understanding of the basis for fine motor deficits, specific interventions can be designed. Efficacy research on motor skill interventions for ASD is scant (see Baranek 2002), and rigorous trials are needed.

**Finger Oscillation Test**  **Finger-Tapping Test** Lauren Schmitt Psychiatry, UT Southwestern Medical Center, Dallas, TX, USA  **Synonyms** Finger oscillation test; FOT; FTT  **Definition** The finger-tapping test (FTT) is a neuropsychological test that examines motor functioning, specifically, motor speed and lateralized coordination. During administration, the subject’s palm should be immobile and flat on the board, with fingers extended, and the index finder placed on the counting device.

and flat on the board, with fingers extended, and the index finder placed on the counting device. One hand at a time, subjects tap their index finger on the lever as quickly as possible within a 10-s time interval, in order to increase the number on the counting device with each tap. The original procedure calls for five consecutive trials within a 5-point range for each hand, but variations include a total of six trials, in two sets of three. Results from FFT can be compared to age and gender

a total of six trials, in two sets of three. Results from FFT can be compared to age and gender normative data and may indicate motor impairment or lateralized brain dysfunction. The FTT is included in the Halstead-Reitan neuropscyhological test battery. The FTT may be included as part of a comprehensive neuropsychological assessment for children with Autism Spectrum Disorder. Additionally, the FTT has been used in multiple research protocols as a standardized method for assessing motor speed

FTT has been used in multiple research protocols as a standardized method for assessing motor speed as it relates to brain functioning and anatomy.

**Finite Mixture Models**  **First “Period”**  **First Responders and Autism** Luke Beardon1, Nick Chown2 and Kleio Cossburn3 1The Autism Centre, Institute of Education, Sheffield Hallam University, Sheffield, South Yorkshire, UK

2Palau-solità i Plegamans, Lliçà de Vall, Barcelona, Spain 3Keele University, Keele, Newcastle-under-Lyme, UK  **Definition** This entry is focused on providing: (1) background on contact between autistic individuals and the criminal justice system and (2) guidance to first responders on issues that may arise in a first contact situation involving an autistic person to enhance their ability to act in an autism-friendly manner.

**Historical Background** Although research in this area is limited, there is some evidence to suggest that autistic individuals come into contact with the criminal justice system significantly more often than predominant neurotype (PNT; nonautistic) individuals (King and Murphy 2014). Although autistic people are statistically less disposed to criminality (Mouridsen et al. 2007), they are seven times more likely to be arrested (Curry et al. 1993), sometimes unlawfully. The longer they remain

times more likely to be arrested (Curry et al. 1993), sometimes unlawfully. The longer they remain (innocently) in the criminal justice system, the greater the injustice and suffering inflicted upon them. There are also potential negative impacts on the police such as a greater risk of litigation, waste of resources, and negative public relations. There is a clear need for the police, and, in particular, officers initially on the scene of an incident (first responders), to have a sufficient

particular, officers initially on the scene of an incident (first responders), to have a sufficient understanding of autism, how it may present in an individual, and how best to handle incidents involving an autistic person. So what is autism? Richard Howlin (2003) calls it social dyslexia. In the same way that dyslexia involves difficulty understanding words, the term “social dyslexia” captures the difficulty that all autistic individuals have, to a greater or lesser degree, in understanding

the difficulty that all autistic individuals have, to a greater or lesser degree, in understanding social situations. As virtually all situations people find themselves in are social, not fully understanding social behavior can give rise to problems when interacting with other people including first responders. Autism is highly complex for various reasons. Firstly, there is its heterogeneity and extreme diversity whereby one autistic individual is unable to live independently or work whereas

extreme diversity whereby one autistic individual is unable to live independently or work whereas another highly intelligent individual is married and working as a university professor. Although the variation in presentation in autism is very wide, all autistic people will have difficulties in understanding PNT social behavior. Autism may also involve what are known as repetitive behaviors (beneficial to the person by introducing some stability and/or being comforting) and “special interests”

to the person by introducing some stability and/or being comforting) and “special interests” (fewer, more intense interests than is usually the case for the PNT). Many autistic individuals are hyper- and/or hyposensitive to sensory stimuli (Bogdashina 2016). Many individuals also experience debilitating anxiety (Bejerot et al. 2014). Autism is made even more complex as the majority of autistic individuals have other conditions as well as autism (comorbidities). These may include pathological

individuals have other conditions as well as autism (comorbidities). These may include pathological anxiety, clinical depression, attention-deficit hyperactivity disorder, and obsessive-compulsive disorder (psychiatric comorbidities), and allergies, gastrointestinal problems, migraines, and seizures (medical comorbidities). Yet another complexity in autism is the ever-changing diagnostic criteria. For many years to come, any of the following diagnoses may come to the attention of first

criteria. For many years to come, any of the following diagnoses may come to the attention of first responders: Asperger’s disorder, Asperger’s syndrome, atypical autism, autism spectrum disorder (ASD), “classical” autism, and pervasive developmental disorder not otherwise specified. All first responders need to know is that these are all attempts by clinicians to diagnose autism so if they are informed that a person they are involved with has one of these diagnoses they know that autism is

informed that a person they are involved with has one of these diagnoses they know that autism is involved and must respond accordingly. If an officer is advised by their despatcher that an individual is autistic, or the individual themselves discloses their autism, any interaction requires sensitive handling based on an understanding of autism. In the introduction to his field response tips for first responders encountering a person with autism, Debbaudt writes: “Law enforcement professionals

first responders encountering a person with autism, Debbaudt writes: “Law enforcement professionals may unexpectedly encounter or be asked to find a person with autism. Recognizing the behavior symptoms and knowing contact approaches can minimize situations of risk - risk or victimization of the person with autism, and risk to the officer” (http://www.autismriskmanagement.com/autism-articles). The role of police officers and other emergency service personnel in a first response situation is to

role of police officers and other emergency service personnel in a first response situation is to avoid a situation where lack of knowledge of autism causes a situation to escalate beyond what would be expected because of a failure to understand autism. The training of all first responders in autism (and other neurodiverse conditions) is therefore essential.

**Current Knowledge** Autistic people are in contact with the police as victims, witnesses, and perpetrators. In this respect, they are no different from people without autism. The differences could arise in various ways. Firstly, while contact with law enforcement can be a stressful thing for anyone, people with autism – who tend to experience greater levels of anxiety, and have lower levels of “global stability” (strategies to cope with the “ups and downs” of life reasonably easily) than

of “global stability” (strategies to cope with the “ups and downs” of life reasonably easily) than their PNT peers – are likely to find such contact especially stressful (Beardon 2008; Chown 2010; Debbaudt and Rothman 2001; North et al. 2008). Secondly, there is an ongoing debate as to whether or not persons with autism are less likely to commit crime than those without autism because of the general tendency in autism to comply with rules and/or are particularly prone to committing certain

general tendency in autism to comply with rules and/or are particularly prone to committing certain types of crime (e.g., stalking) because of social difficulties and less well-developed theory of mind (the means by which people make sense of the behavior of others by attributing beliefs, desires, and feelings that motivate actions) than the PNT (King and Murphy 2014). On the issue of whether autistic people are more or less likely to commit crimes than their PNT peers, Mouridsen (2012)

autistic people are more or less likely to commit crimes than their PNT peers, Mouridsen (2012) concluded that: Currently, there is still no body of evidence to suppose that people with ASD are more prone to commit offences than anyone else. However, a small number of serious crimes can be linked to the core features of ASD. Co-morbid psychiatric disorders are important risk factors for offending in people with ASD. (Mouridsen 2012, p. 79) Although Mouridsen is careful to clarify that there is

in people with ASD. (Mouridsen 2012, p. 79) Although Mouridsen is careful to clarify that there is no valid evidence regarding types of offending that may be associated with autism, he discusses certain types of offending that the limited studies undertaken in this area indicate may be linked with autism. The serious crimes he referred to are arson and sexual offending with and without violence. He concluded by repeating that “available findings still indicate that people with ASD are not more

He concluded by repeating that “available findings still indicate that people with ASD are not more prone to committing offences than anyone else” (ibid., p. 85). Since Mouridsen’s review, Sevlever et al. (2013) have reported on sexual abuse and offending in autism. They have been unable to identify any evidence of a greater risk of sexual offending conduct in autistic individuals. They include a useful discussion of factors that may lead to an increased or reduced risk of sexual offending in

a useful discussion of factors that may lead to an increased or reduced risk of sexual offending in autism (summarized in the following table) that may be of more general application.

| Factors that may increase the risk | | :-------------------------------- | | Difficulty with social-emotional reciprocity/reduced levels of empathy (PNT individuals who sexually offend also demonstrate lack of empathy for their victims) |
| Naiveté (interpersonal/exploitation by others) | | Sexual frustration and preoccupations/limited intimate relationships | | Comorbid intellectual disability (in which case it may be the latter that increases the risk of offending) |

| Individuals with autism may be more likely to offend against younger children because, given poor social skills, younger children may be easier to interact with than older children or adults |
| Tendency to engage in private sexual behaviors in public places | | **Factors that may decrease the risk** | | The greater supervision of some autistic individuals reducing opportunities to offend |
| A limited ability to deceive others which may reduce precursor behaviors to sexual offending |

| A limited ability to deceive others which may reduce precursor behaviors to sexual offending |
| A tendency for autistic individuals, especially higher functioning individuals, to be rule-governed could inhibit such offending |

| Extracted from Sevlever et al. (2013), pp. 192 and 194–195 |  Where there is a comorbid psychiatric disorder in addition to autism, one has to bear in mind that it may be the comorbidity that is leading to the offending acts, not the autism per se. We know of no research suggesting that an autistic person with any particular comorbid psychiatric disorder is any more likely to commit a crime than a PNT individual with the same psychiatric disorder. Based on their systematic review of the

than a PNT individual with the same psychiatric disorder. Based on their systematic review of the literature, King and Murphy (2014) reported that there was “little” evidence to support the often-heard contention that people with autism are overrepresented in relation to certain crime types. Allen et al. (2008, p. 748) expressed the view that “The apparent association with offending has been in part generated by sensationalised . . . media reports.” As some autistic individuals who commit a

part generated by sensationalised . . . media reports.” As some autistic individuals who commit a crime do so without criminal intent, there may be a lower tendency to knowingly commit crimes in autism (Beardon 2008). Autistic individuals are well known to have uneven ability and skills profiles. While a person may be extremely adept in one area, they may present as extremely poor in another. This can lead to erroneous assumptions being made by others – either of ability above and beyond actual

can lead to erroneous assumptions being made by others – either of ability above and beyond actual capability or incorrectly inferring a skill set is below par. Having an “autism profile” that identifies how autism impacts on an individual on a day-to-day basis can be an invaluable tool to help understand experience from that autistic person’s perspective. It is extremely common for people to make judgments based on behavior, and it is equally common for those judgements to be based on years of

judgments based on behavior, and it is equally common for those judgements to be based on years of ingrained PNT concepts; however, the application of those judgements onto an autistic person whose behavior results from different cognition is likely to lead to false premises. A good autism profile must include a full sensory profile, i.e., a thorough identification of how the sensory environment impacts on the individual.

Anxiety and poor stress management are common in children with autism. Anxiety levels may increase during adolescence, as young people face an increasingly complicated social environment and often become more aware of their difficulties interacting with others (White et al. 2009). Anxiety levels exhibited by adolescents with autism are significantly higher than those in the general population. Anxiety remains a serious issue for many adults with autism. Gillott and Standen (2007) demonstrated

remains a serious issue for many adults with autism. Gillott and Standen (2007) demonstrated that adults with autism were almost three times more anxious than their comparison group of adults with intellectual disabilities. They wrote that “stress was found to correlate with high anxiety levels for the autism group, particularly the ability to cope with change, anticipation, sensory stimuli and unpleasant events” (ibid., 2007, p. 359, our italics). While a first response situation, or other

unpleasant events” (ibid., 2007, p. 359, our italics). While a first response situation, or other contact with the criminal justice system, is likely to be stressful for most people, individuals with autism will often face higher levels of anxiety and stress than their PNT peers. Steps should be taken, as far as possible, to reduce anxiety and stress; this will be of benefit to first responders as well as to the autistic individuals. We have set out various steps that can be taken in a variety

well as to the autistic individuals. We have set out various steps that can be taken in a variety of situations to achieve this. However, the most important action an organization can take is to train its officers, and those staff who come into contact with the public, to have an understanding of autism. The behavior of an autistic individual at times of duress is highly likely to differ from that of a PNT individual. If that behavior is only understood within a PNT context, it is very probable

of a PNT individual. If that behavior is only understood within a PNT context, it is very probable that it will be misinterpreted. At times of increased anxiety, the individual may well present behaviors necessary to avoid a “meltdown.” Many autistic people experience meltdowns. The public often finds it hard to tell meltdowns and temper tantrums apart, but they are different things. A meltdown is an intense response to a situation an autistic person finds overwhelming. To cope with such a

is an intense response to a situation an autistic person finds overwhelming. To cope with such a situation, the autistic person may need to engage in repetitive body movements (stimming). Interrupting this may increase levels of anxiety exacerbating the situation. Some possible scenarios that could lead to incorrect initial perceptions on the part of first responders include:

1.  Refusal to engage – Sometimes, when under duress, the autistic response is essentially to shut off from external stimuli as much as is possible. To the “untrained eye,” the person may appear to be refusing to respond, or excessively rude, or even having something physically wrong with them. But it may be a coping mechanism to reduce their anxiety.

2.  Seemingly excessive reaction to proximity and/or touch – At times of high anxiety, sensory sensitivities may be greatly increased. This means that if someone is tactile sensitive, for example, then any touch (including very light touch) may be processed as intense pain. In some cases, a “natural” reaction to a perceived assault for some people would be to defend themselves. Even well-intentioned contact meant as reassurance might be perceived as painful. Sometimes an autistic individual can

contact meant as reassurance might be perceived as painful. Sometimes an autistic individual can move from a state of anxiety to a state of panic simply because someone such as a first responder is too close to them.

3.  Already in a state of panic – A single-crewed officer received a call about a man with a knife. She followed the man in her car to allow backup to arrive but soon realized that she knew the man to be autistic and with intellectual learning difficulties and that he was not dangerous. A group of young men had approached him and sent him into a panic. The officer knew that firearms officers and dogs were on the way to the scene, so she knew she had to act quickly and get the knife off him. She

were on the way to the scene, so she knew she had to act quickly and get the knife off him. She explained that other officers would soon arrive who did not know him like she did and was able to get him to throw the knife away. She also agreed not to handcuff him, as she knew it would hurt him, and suggested that they sat in the back of the police car together. The situation had been “defused.”

4.  Eye contact issues – Social practice assumes a good way of gaining attention is to insist on eye contact and that eye contact reciprocity will lead to a greater sense of trust. Although some autistic people do not have difficulty looking other people in the eye, many do and this difficulty can be exacerbated at times of stress. A first responding police officer may easily misinterpret this as deliberate evasion, a guilty reaction, or disrespect. Of course, as with any other individual, an

deliberate evasion, a guilty reaction, or disrespect. Of course, as with any other individual, an autistic person can deliberately evade, react guiltily, or show disrespect, but it is far more likely that not looking the officer in the eye is an aspect of their autism.

5.  Flight risk – A person with autism may try and run away from a situation involving a first responder. Unless an officer has an understanding of autism, they will assume that this is a guilty reaction. It could be a guilty reaction of course but the officer should not assume this as it may be an autistic reaction. The autistic person may have great difficulty with social interaction and experience high levels of anxiety. Their natural response may be to get away from a highly stressful

high levels of anxiety. Their natural response may be to get away from a highly stressful situation without thought as to the impression this creates, nor to the potential consequences of their own actions.

There are other aspects of autism that may lead to misinterpretation of behavior by first responders irrespective of an autistic individual’s level of anxiety. For example:

6.  Sensory processing – Autistic individuals may only be able to process sensory information through one sensory channel at a time. This is known as single attention (Murray et al. 2005). They may be unable to process auditory information, for example, because they are focusing on visual information. A lack of ability to hear, and subsequently respond to, verbal requests may come across as defiance and/or noncompliance.

7.  Shutdown – A shutdown is caused by the same factors that cause a meltdown but instead of losing behavioral control the individual stops reacting to the situation as a means of avoiding it. An autistic former member of the police staff of a major United Kingdom police force found herself in the reception area of an office building when police suspected a terrorist incident was in play. An officer shouted to the people there to get out of the building. This autistic individual “froze.” This

shouted to the people there to get out of the building. This autistic individual “froze.” This was misinterpreted by officers and a difficult situation arose.

8.  Lack of or “odd” facial expression/nonverbal communication – Some autistic people demonstrate either no facial expression (i.e., the “same” face irrespective of the situation) or a facial expression seemingly at odds with the situation (e.g., smiling when in distress). The misinterpretation of facial expressions could put the autistic individual at risk. First responders should be aware that facial expressions, “body language,” and other nonverbal cues are not always an indication of an

facial expressions, “body language,” and other nonverbal cues are not always an indication of an emotional state or intent.

Autistic individuals tend to use and process language and nonverbal cues in different ways in comparison to their PNT peers. Issues include:

9.  Expressive versus receptive language – For most people, expressive language skills are a reasonable indicator of receptive skills (comprehension). In other words, there might be an assumption that an eloquent person will have equally good comprehension skills. This may not be the case with an autistic person who may display very good expressive language skills but have huge problems with understanding what is being said to them; conversely, they may not speak but have a good understanding

what is being said to them; conversely, they may not speak but have a good understanding when being spoken to.

10. Feeling obliged to respond – Remaining with the poor comprehension theme, some individuals will have learnt (usually by being directly taught) that a rule in verbal exchanges is that they must respond if asked a question. This places the individual at a huge disadvantage if they feel obliged to respond despite not understanding the question. In an interview situation, this clearly could create numerous problems for an autistic individual.

11. Difficulty with repeated questions – An autistic individual may consider that once they have responded to a question that should be the end of that particular matter as they have said what they wanted to say in response and should not be expected to answer the same question again. This may present a problem for officers in a police interview situation where standard interviewing technique may require repetition of certain questions. Officers should be aware that refusal to answer a repeated

require repetition of certain questions. Officers should be aware that refusal to answer a repeated question may not reflect lack of cooperation.

12. Multiple concepts or questions at one time – Many autistic people can get confused when they are asked to deliberate over multiple concepts at the same time or when more than one question is asked at the same time. It is good practice when communicating with an autistic person to ask questions that are clear and “one dimensional” and to do so one at a time.

13. Literal interpretation – An autistic person often has a very specific way of understanding language. They may assume a direct correlation between the words being spoken and their meaning (sometimes referred to as literal interpretation). However, many people do not use language in this way, even if they might think they do. Language is full of contradictions and ambiguities and some people’s use of language is more accurate than others. For example, the instructions: “Freeze! Don’t move!

use of language is more accurate than others. For example, the instructions: “Freeze! Don’t move! Take your hands out your pockets and turn around slowly. . .” have a clear meaning for most people. But to an autistic person in a stressful situation, it might appear that the person is quite literally contradicting himself or herself and they will not know how to react to what they hear as a confusing set of commands.

14. Processing language – Processing time may be considerably longer for autistic individuals than for PNT individuals. This means that after each sentence, for example, an individual might need a few seconds to “digest” what has been said in order to understand it. If this additional processing time is not allowed, either the person will fall further and further behind the communication – or they will simply miss chunks of it out in order to keep up.

15. Prosody – this refers to the tone of voice, inflection, and stressors placed on words – which is often either misunderstood or not taken into account at all by an autistic person. In some cases, the same sentence can have very different meanings dependent on the prosodic expression – in written language grammar along with italics provides the equivalent information. It is important for anyone communicating with an autistic person to take into account that their language (including prosody)

communicating with an autistic person to take into account that their language (including prosody) needs to be as ambiguity-free as possible. For example, asking “what do you think happened” may mean something very different to “what do you think happened,” but the prosodic inflection may not be processed by the autistic person.

Some autistic people may break the law as a direct result of the way in which autism impacts upon them, as opposed to having criminal intent (Beardon 2008). Having an understanding of what caused an autistic person to behave in a criminal manner would enable better decisions. For example, an autistic adult who is both socially naïve and desperate for friendship might be persuaded to hoard stolen goods in return for the promise of being included in a social group. Lack of understanding of cause

goods in return for the promise of being included in a social group. Lack of understanding of cause and effect, consequences of actions, difficulty with understanding the intentions of others, naïve levels of trust, difficulty in reading social situations, and accepting language at “face value” are all common characteristics of being autistic and may increase the risk of engaging in activity without knowing that it is criminal activity.

**Future Directions** In this section, we discuss the importance of disclosure of a diagnosis of autism, include tips for first responders in a “first contact” situation (courtesy of the autism specialist, Dennis Debbaudt) and for communicating with persons with autism (including in an interview situation), make some general comments on anxiety levels and sensory sensitivities in autism, and include recommendations for future practice. Police officers and other first responders come into

include recommendations for future practice. Police officers and other first responders come into contact with all types of neurodiversity, not just autism. While clinicians often require hours to diagnose a neurodiverse condition, first responders may have very little time in which to “size up” an individual with whom they are in contact. Even if all first responders received effective training in neurodiverse conditions, they cannot be expected to identify any one of these conditions in a

in neurodiverse conditions, they cannot be expected to identify any one of these conditions in a first response situation. This emphasizes the importance of disclosure in such situations. It is appreciated that there are various reasons why an individual may not wish to disclose a diagnosis outside family and friends. However, we consider it important that police forces, other first response organizations, and those advocating for autism and other neurodiverse conditions do all they can to

organizations, and those advocating for autism and other neurodiverse conditions do all they can to encourage disclosure in first response situations (even by those individuals who otherwise would not disclose) as first responders cannot reasonably be expected to react appropriately in every situation they may face in the absence of disclosure. Major autism charities in the United Kingdom, like the National Autistic Society, have produced information cards that autistic people can carry and

the National Autistic Society, have produced information cards that autistic people can carry and share with first responders. These cards explain that the person they are speaking to is autistic. They also highlight the potential of communication difficulties the autistic person may have during unfamiliar situations. Debbaudt (2002) has developed some guidelines to assist first responders when an individual is known to be autistic.

*   Approach in a quiet, nonthreatening manner. *   Turn sirens and flashing lights off. *   Talk calmly in a moderated voice. *   Do not interpret limited eye contact as deceit or disrespect. *   Avoid metaphorical questions that cause confusion when taken literally. *   Avoid body language that can cause confusion. Be alert to a person modelling your body language.

*   Understand the need to repeat and rephrase questions. *   Understand that communications will take longer to establish. *   Use simple and direct instructions and allow for delayed responses to questions, directions and commands (Debbaudt 2002).

We would add the following additional guidance to Debbaudt’s suggestions: *   Where possible avoid touch as even a light touch may cause pain where a person is hypersensitive. Touching may cause a “flight or fright” reaction; don’t assume that means the person is guilty of an offence.

*   The cold metal part of handcuffs may cause pain so avoid where possible.  When a person is arrested they are being deprived of their liberty and an officer needs to explain why, in the form of a police caution. The police caution can be complicated to understand so instead of asking a suspect if they understand which may produce a “yes” or “no” response, ask them to explain in their own words what they understood; this could help to identify vulnerable suspects. It is worth noting that in

what they understood; this could help to identify vulnerable suspects. It is worth noting that in the UK, the Police and Criminal Evidence Act, 1984 (PACE), states that a person should be treated as vulnerable when a custody officer has any doubt about their mental state. Easy read custody sheets that help bridge the gap between a custody officer and a suspect whilst they await an appropriate adult have been piloted in a UK force with positive outcomes for autistic people. Moreover, they take

have been piloted in a UK force with positive outcomes for autistic people. Moreover, they take away the uncertainty of what will happen while they are in custody (Parsons and Sherwood 2016). Attwood (2008) suggests that a number of autistic people find that sensory sensitivity causes them more issues in daily life than the social aspects connected with autism. Hence, understanding what may cause these sensory distractions will help to create a less stressful environment for an interview to

these sensory distractions will help to create a less stressful environment for an interview to take place. For example, the noise of a clock in an interview room may be distracting or cause pain for someone hypersensitive to noise so consider moving objects out of the interview room that will cause distractions. When there are sensitivities, a holding cell or an interview room accompanied by an officer maybe more appropriate than placing a suspect with autism in a police cell alone. Although

officer maybe more appropriate than placing a suspect with autism in a police cell alone. Although some guidance for first responders recommends attempting to move a person in the midst of a meltdown, this should not be attempted; the person can be moved to a quiet area after the meltdown has subsided.

Debbaudt (2002) highlights susceptibility in autistic people during interviews; in particular, when leading questions are asked. As a result of the susceptibility of some autistic people, they may feel that they do not need legal advice and confess to an offence that they did not commit. This is especially true if the questions were not responded to correctly due to misinterpretation. It is good practice to summarize from time to time during an interview to check understanding. If the person

practice to summarize from time to time during an interview to check understanding. If the person is quiet or confused, consider asking them to write their responses down. Allow them extra time to process information. Additionally, direct support from another person, either a family member or an appropriate adult should be considered a reasonable adjustment. An autistic person may also agree to receiving a police caution for a crime they have not committed due to anxiety of going to court and

receiving a police caution for a crime they have not committed due to anxiety of going to court and being cross-examined. It is also paramount that the person understands that accepting a police caution results in a criminal record and will affect any criminal conviction checks in the future. It is also noteworthy that in the UK, you can only appeal against your conviction, sentence, or both at a magistrates’ court if you pleaded not guilty at your trial

your conviction, sentence, or both at a magistrates’ court if you pleaded not guilty at your trial (https://www.gov.uk/appeal-against-sentence-conviction/magistrates-court-verdict). Therefore, a custody officer’s risk assessment for an autistic person should include assigning an appropriate adult to ensure procedures are followed and understood by the detainee. An appropriate adult should be additional to legal representation and should be present during the interview. However, it is only when

to legal representation and should be present during the interview. However, it is only when vulnerabilities are suspected or declared that such provision will be arranged emphasizing the importance of disclosure when in police custody. Officers should consider taking statements from an autistic victim of a crime in surroundings familiar to them. Explain what being a witness entails and offer support if a case goes to trial.

We have explained that individuals with autism will often face higher levels of anxiety and stress than their PNT peers. Steps should be taken, as far as possible, to reduce their anxiety and stress; this will be of benefit to first responders as well as to the autistic individuals they interact with. We have set out various steps that can be taken in a variety of situations to achieve this. However, the most important action an organization can take is to train its officers (and those staff

the most important action an organization can take is to train its officers (and those staff who come into contact with the public) to have an understanding of neurodiverse conditions since knowledge enhances interaction. Future operational first responder practice must involve adequate training of officers and staff if interactions between first responders and persons with autism are to improve. Hence we conclude this entry with some comments on existing autism awareness training and a set of

Hence we conclude this entry with some comments on existing autism awareness training and a set of recommendations. In the United Kingdom, there have been only two studies of autism training provision by first responders – the police service in both cases – by Artingstall (2007) and Chown (2010). However, we have analyzed responses from 34 of the 43 UK police forces to a questionnaire submitted as Freedom of Information Act requests in July 2016, including a question asking for details of

as Freedom of Information Act requests in July 2016, including a question asking for details of autism awareness training. Our data shows that there is no consistency in training provision for autism across the police service in the UK. Only 16 of the 34 respondents provide, or had provided, some form of autism training. The training provided varies greatly and may only be a PowerPoint presentation on a force website, online learning, or a 90 minute in-person session. Only five forces had

on a force website, online learning, or a 90 minute in-person session. Only five forces had involved their local autism organization in developing their training. Another force had provided four separate autism courses – each of a full day – in which they had trained almost 1200 officers and staff although almost all this training had been undertaken 4 years ago or more. In the USA, even in a situation where training is mandated by the state legislature (New Jersey in this case), and the

a situation where training is mandated by the state legislature (New Jersey in this case), and the training is delivered on a “minimalist” online basis, a “survey indicated that a significant percentage of emergency service personnel have not completed the state mandated training” (Kelly and Hassett-Walker 2015, p. 9).

The following recommendations are made regarding future first responder autism awareness training (Chown 2010; Debbaudt 2002; Kelly and Hassett-Walker 2015):
1.  While online training may have its place, in-person training is arguably far superior, especially where autistic individuals are involved in the delivery.

2.  Individuals with experience of first response situations in a professional capacity and of autism bring a personal bond and validity to autism training. Officers and staff in first responder organizations with an immediate family relationship with a person with autism represent a potential training resource for their organizations.
3.  Studies suggest that lengthier and more diverse approaches to training are often desired and covering all neurodiverse conditions rather than “just” autism.

4.  Training should also be conducted jointly between the police, fire, and ambulance services, including discussion groups and role play scenarios, so that each service can contribute their own perspective and learn from the others.
 **First Words Project** Moira Lewis Speech-Language Pathologist, Marcus Autism Center Children’s Healthcare of Atlanta, Atlanta, GA, USA

**Definition** The First Words Project is a clinical and research program, staffed by speech pathologists, researchers, and interdisciplinary consultants, aiming to investigate developmental communication disorders while providing services for young children with communication delays and their families. An overarching goal of the First Words Project is to emphasize the importance of early screening and diagnostic methods to detect social-communication delays and disabilities in young children

and diagnostic methods to detect social-communication delays and disabilities in young children and to provide assessment and intervention to children and families of toddlers with delayed development who otherwise may have not had access to knowledge of the need for services.

**Historical Background** Led by Amy Wetherby, Ph.D., The First Words Project conducts longitudinal research in the Autism Institute in the College of Medicine at Florida State University. The goals of the project are to identify early red flags of autism spectrum disorders and other developmental disorders in children under 2 years of age, to develop and improve early screening tools and early detection of communication disorders, and to provide training and support to families of children

detection of communication disorders, and to provide training and support to families of children with ASD and other developmental disorders affecting communication. A number of early intervention screening and assessment recommendations have been developed based on the research and work with children and families since the beginning of the First Words Project, including the use of the Communication and Symbolic Behavior Scales (Wetherby & Prizant, 2001) to identify children 6–24 months of age

and Symbolic Behavior Scales (Wetherby & Prizant, 2001) to identify children 6–24 months of age at risk for developmental disabilities, including autism. The First Words evaluation model follows two-step process designed to involve participating families, thereby reducing the need for clinicians and in-home providers. The goal here is twofold, providing parents and caregivers with training and resources for developing communication and social skills in the home and reducing costs surrounding

resources for developing communication and social skills in the home and reducing costs surrounding early intervention home services.

**Current Knowledge** First Words Project receives national and private funding to evaluate the communication development of children from 6 to 24 months of age. For children who are delayed in communication, intervention services are offered at no cost to families or service providers, based on availability of grant funds.

**Future Directions** First Words is also developing educational materials and assessment tools for training of healthcare and childcare providers to improve early detection of communication problems in young children. The First Words Project continues efforts to disseminate research, clinical tools, and information to all those involved in serving children with developmental disabilities and autism, including parents and caregivers. Online educational tools such as the ASD Video Glossary, an

including parents and caregivers. Online educational tools such as the ASD Video Glossary, an innovative web-based video application, are available to help parents and professionals learn more about the early red flags of autism spectrum disorders. This ASD Video Glossary is available free of charge through the First Words Project website as well as the Autism Speaks website. The ASD Video Glossary contains over 100 video clips. Each video highlights diagnostic areas important to assess and

contains over 100 video clips. Each video highlights diagnostic areas important to assess and consider when diagnosing ASD and/or differentiating ASD from other common childhood developmental delays. Each section of clips contains both child examples and short tutorials to help viewers detect subtle differences between typical and delayed development in young children and to spot the early red flags for ASD. As per the First Words Project website, all of the children featured in the ASD Video

for ASD. As per the First Words Project website, all of the children featured in the ASD Video Glossary as having red flags for ASD are, in fact, diagnosed with ASD.

**Fixed Interval**  **Fixed Ratio** Mary Jane Weiss and Samantha Russo Institute for Behavioral Studies, Endicott College, Beverly, MA, USA  **Synonyms** Fixed interval  **Definition** Fixed ratio is a schedule of reinforcement. In this schedule, reinforcement is delivered after the completion of a number of responses. The required number of responses remains constant. The schedule is denoted as FR-#, with the number specifying the number of responses that must be produced to attain

denoted as FR-#, with the number specifying the number of responses that must be produced to attain reinforcement. In an FR-3 schedule, 3 responses must be produced in order to obtain reinforcement. In an FR-15 schedule, 15 responses must be emitted before reinforcement is delivered. This ratio requirement (number of responses to produce reinforcement) is conceptualized as a response unit. In other words, it is the response unit (not the last response) that leads to the reinforcer (Cooper et

words, it is the response unit (not the last response) that leads to the reinforcer (Cooper et al. 2007; Skinner 1938). Applications of FR schedules can be found in business and in education. Some tasks are paid on an FR schedule (e.g., piecework). Students might receive a token after the completion of ten spelling words. FR schedules are associated with a particular pattern of responding. After the first response, there is generally little hesitation between responses and the required

After the first response, there is generally little hesitation between responses and the required responses are completed. After the ratio requirement is met, reinforcement is delivered. This is followed by a postreinforcement pause, in which the participant does not respond for a period of time following reinforcement. The size of the ratio influences the length of the pause. Duration of the postreinforcement pause is greater for large ratio requirements. Shorter pauses occur with small ratio

pause is greater for large ratio requirements. Shorter pauses occur with small ratio requirements. The FR schedule is visually depicted as a stepwise pattern. FR schedules produce high rates of responding. It is associated with rapid response speed, since completion of the ratio requirement leads to reinforcement. In general, higher ratio requirements produce higher rates of responding (to gain more reinforcement). If the ratio requirements are too stringent, however, the rate of response can

more reinforcement). If the ratio requirements are too stringent, however, the rate of response can decrease. The maximum ratio must be individually determined and continually monitored. The determination of the maximal value is influenced by motivating operations, the individual’s reinforcement history, and the quality of the reinforcer.

**Flat Prosody**  **Flexibility**  **Flight of Ideas** Jan Rutger Van der Gaag Department of Psychiatry and Karakter University Center for Child and Adolescent Psychiatry, Radboud University Medical Centre, Utrecht, Netherlands

Stradina University of Riga, Riga, Latvia  **Synonyms** Derailment; Loose associations; Tangentially  **Definition** Flight of ideas is a formal thought disorder. It refers to the expression of rapidly shifting thoughts in an individual. Thoughts are expressed through language. In individuals with “flight of ideas,” thoughts are expressed in a highly associative manner. These associations may be linked to cue in the surrounding environment, elicited by associations stemming from the topic or

linked to cue in the surrounding environment, elicited by associations stemming from the topic or merely by words. The individual’s speech becomes incomprehensible, because he does not tune into the listener’s needs by providing the listener with information that prepares him for changes of topic of conversation, thus making these better understandable. Flight of ideas may occur in the course of a manic episode, during a psychosis, but is not uncommon in individuals with an autistic disorder of

manic episode, during a psychosis, but is not uncommon in individuals with an autistic disorder of multiple complex developmental disorder. In the latter individuals, the question is raised whether this is really a thought disorder or a communicative deviance more related to expressive language disorder in these individuals. Others (Raymond Lake 2008) consider thought disorder as an expression of mood disorder.

**Floor Effect** Hillary Hurst Department of Psychology, University of Massachusetts Boston, Boston, MA, USA  **Definition** The floor effect is a statistical phenomenon in which most data points fall in the very low range of possible values (“bottom out” on the “floor” of the measure). The floor effect is often seen in assessment when a test is too challenging for a given target population. In turn, many subjects obtain scores that are clustered together at the bottom of a measure, with very

turn, many subjects obtain scores that are clustered together at the bottom of a measure, with very few extending across the possible range of scores. This results in a skewed distribution with very limited variability. Floor effects greatly limit the clinical utility of measures. For example, if there are floor effects on a measure prior to and following an intervention designed for individuals with ASD, it will not be possible to observe any actual benefits that might have occurred for

with ASD, it will not be possible to observe any actual benefits that might have occurred for participants.

**Floor Time/Circle of Communication** Laura Bonazinga Bouyea Vermont Speech Language Pathology, University of Vermont, South Burlington, VT, USA

**Definition** Floortime is one component of the Developmental, Individual-Difference, Relationship-based (DIR®) approach for engaging children with autism spectrum and related socioemotional disorders. The DIR® model provides an interdisciplinary approach for practitioners, educators, and families to comprehensively assess and provide intervention according to the unique developmental profile of the child. Floortime focuses on creating opportunities of connection between the care-provider and

the child. Floortime focuses on creating opportunities of connection between the care-provider and student, fostering learning through emotionally engaging and meaningful interactions while encouraging mastery of six foundational stages of social, emotional, and intellectual development (Greenspan and Wieder 2006). Previous implementation suggested the ideal targeted population to be in the early toddler years; however, more recently the authors have expanded the target population to include

toddler years; however, more recently the authors have expanded the target population to include older children and adolescents who have developmental differences. The initial goal of Floortime is to discover individual differences in sensory processing, language, motor, visual, and intellectual capacities, as well as identify the child’s view of the world by attending to the child’s interests, sensory modulation and processing, motor planning, and symbolic formulation and use. The practitioner

modulation and processing, motor planning, and symbolic formulation and use. The practitioner then enters into the child’s world by imitating or following the child’s lead, attempting to draw the child into a shared interaction (Davis et al. 2014). Once an initial affective interaction is established, the clinician encourages a response, creating a circle of communication marked by an increase in intentional or purposeful two-way communication. When the foundational skills of opening

in intentional or purposeful two-way communication. When the foundational skills of opening (initiating) and closing (responding to) circles of communication have been established, more complex areas of social, emotional, and intellectual capacities are fostered by creating small obstacles or variations during Floortime (Greenspan and Wieder 1997). The DIR® approach, of which Floortime is a part, emphasizes individualized early intervention to treat the developmental differences often observed

emphasizes individualized early intervention to treat the developmental differences often observed in autism (Landa et al. 2007) in consideration of the child’s unique presentation of social, cognitive, and processing deficits.

**Historical Background** Stanley I. Greenspan first developed and presented the DIR®/Floortime approach for treating children with developmental and emotional disorders in 1992. Greenspan and colleagues, including, Serena Wieder, drew from interventions across disciplines to hone and perfect a comprehensive and child-led approach for intervening with nonprogressive developmental disorders, such as autism spectrum disorders (ASD), from a functional developmental framework instead of treating

as autism spectrum disorders (ASD), from a functional developmental framework instead of treating individual symptoms (Greenspan and Wieder 1999). The development of the DIR®/Floortime model has as its foundation the most influential research in the field of developmental psychology (ICDL 2000) dating back to the early work of Jean Piaget (1896–1980) and Lev Vygotsky (1896–1934). Piaget hypothesized that there was a typical progression through human development whereby babies construct or build

that there was a typical progression through human development whereby babies construct or build on innate “schemas” about the world as they progress through four stages of cognitive development. This theory, which became known as the constructivist view of learning, suggested that children have an innate or intrinsic motivation to interact with others and play, gathering and constructing knowledge about the world, through which they form the foundation for understanding abstract and symbolic

about the world, through which they form the foundation for understanding abstract and symbolic representations of the world (Huitt and Hummel 2003; Prelock 2006). The significance of play in learning and development was also an idea shared by Vygotsky; however, he suggested a more sociocultural view of cognitive development (Prelock 2006), as he posited that it was through the continued interaction with others that developmental changes occurred in individuals (Cole and Scribner 1978). In

with others that developmental changes occurred in individuals (Cole and Scribner 1978). In 2004, Greenspan and Shanker suggested that while play was important for general development, emotions and, more specifically, affective signaling between communicative partners during play directly allowed for individuals to develop their “first idea,” a mental construct or representation of something intangible. They hypothesized that through the development of emotional understanding and reciprocal

They hypothesized that through the development of emotional understanding and reciprocal signaling, play and social interaction lead to symbolic reasoning and higher-order cognition. Drawing from the literature and research on the core deficits defining ASD, they developed a model of functional developmental capacities that when absent or reduced led to decreased formation of the foundations for relating, communicating, and thinking. Historically, treatment approaches for ASD follow two models

relating, communicating, and thinking. Historically, treatment approaches for ASD follow two models for intervention: behavioral approaches for reducing maladaptive or inefficient behaviors and cognitive approaches for training individual skills according to the absence or presence of expected abilities at a given age (Greenspan and Wieder 2006). In the development of the DIR®/Floortime model, the authors defined the core goal areas based on relevant areas of developmental functioning that may

authors defined the core goal areas based on relevant areas of developmental functioning that may or may not have been impaired in a given disorder. They reasoned that the very foundation of a comprehensive treatment program was to build upon a core set of skills that are requisite for the development of more broad and higher-cognitive skills. Using the authors’ experience in emotional and social development, and their focus on treating a multifaceted neurodevelopmental disorder with

and social development, and their focus on treating a multifaceted neurodevelopmental disorder with interventions across several disciplines, they suggested the DIR® model, which included all relevant and critical areas of development, including systems responsible for emotional, social, language, motor planning, and sensory processing and modulation.

**Rationale or Underlying Theory** The development and expansion of play skills has gained recognition as serving an integral role in the acquisition of cognition, language, emotional intelligence, and social skills in children (National Research Council [NRC] 2001; Prelock 2006). Further, it has been suggested that a connection with an adult, during play and social routines, scaffolds and informs the child’s ongoing development of meaning, beliefs, and values for the social context, thereby

the child’s ongoing development of meaning, beliefs, and values for the social context, thereby influencing the child’s ability to expand his/her knowledge through experiences with objects, actions, and events (Greenspan and Shanker 2004; Greenspan and Wieder 2006; NRC 2001; Prelock 2006). As intervention techniques begin to broaden and include more intensive and early intervention programs, some suggest a developmental and relationship-based approach may be more effective for treating children

suggest a developmental and relationship-based approach may be more effective for treating children with ASD. Development, Individual Differences, and Relationships are three integral aspects of the Floortime approach, which purport to form a strong foundation from which several strategies can be used to create attuned relationships, which thereby foster continued brain development. Development refers specifically to a symbolic ladder, corresponding to a typical developmental trajectory of

refers specifically to a symbolic ladder, corresponding to a typical developmental trajectory of social emotional capacities, which successively lead to the development of intimacy, mutuality, intentionality, empathy, creativity and resilience. Individual Differences reflect the importance of the acknowledgment, examination, and integration of differences across how individuals functionally engage in sensory registration, modulation, and interpretation; and language and motor processing; as

in sensory registration, modulation, and interpretation; and language and motor processing; as well as interpret related concepts. Relationships are defined as the development of warm, flexible, sensitive, and open adult-child connections leading to finely attuned relationships, which provide the firm foundation to support neural integration, socioemotional, and sociocognitive growth (Davis et al. 2014). Limited ability to relate and emotionally connect within the social context is inherent in

2014). Limited ability to relate and emotionally connect within the social context is inherent in the core deficits often observed in ASD and related sociocommunicative disorders. This limitation, coupled with a reduced or lack of initiation and/or attention toward others, restricts the child’s ability to form ideas and expand their knowledge of reciprocal and symbolic play (Greenspan and Wieder 2006; Mundy et al. 1990; Prelock 2006). Greenspan and Shanker (2004) refer to the early development

2006; Mundy et al. 1990; Prelock 2006). Greenspan and Shanker (2004) refer to the early development of a “first idea” as a primitive construct that leads to the integration of symbolic, linguistic, and intellectual knowledge. This, in turn, allows for the child to appreciate the ever-changing social context and navigate the dynamics of play leading to increased interpersonal communication.

In 1997, Greenspan and Wieder presented a paradigm of Functional Developmental Levels (FDLs) that reflected expected capacities in relating, emotional understanding, and symbolic representation throughout six stages of typical development. They posited that typical development progresses through successive mastery of each stage and is essential for normal development of emotional reasoning, a matured sense of self as well as higher-level cognitive development. Later these stages were expanded

sense of self as well as higher-level cognitive development. Later these stages were expanded to include some higher-level aspects of emotional understanding, affective reasoning, and cognition, and are now referred to as Functional Emotional Developmental Capacities (FEDCs) (Greenspan and Wieder 2006). Consequently, for the purpose of clarity, they will be referred to as FEDCs and are described in more detail below. Stage one of the FEDCs is the capacity for mutual or shared attention or the

in more detail below. Stage one of the FEDCs is the capacity for mutual or shared attention or the ability to regulate attention and behavior while monitoring and processing sensory information from the environment and one’s own body. Self-regulation is one component of this stage whereby a child learns the association between a physical state and an emotion. Another component is the emergence of joint attention, typically occurring between 6 and 9 months of age, although children begin

of joint attention, typically occurring between 6 and 9 months of age, although children begin processing sensory information shortly after birth. The capacity for joint attention is also viewed as a prerequisite skill for later language and communicative development (Mundy et al. 1990). Successful joint attention between caregiver and child begins to foster the child’s knowledge for discriminating pleasurable from unpleasurable experiences (Greenspan and Wieder 2006). It is through initial

pleasurable from unpleasurable experiences (Greenspan and Wieder 2006). It is through initial sensory processing paired with increased attention to others during mutually shared experiences that a child’s emotional understanding begins to deepen. Stage two typically emerges between 2 and 5 months of age and is marked by engagement and relating with others. As a child’s ability to engage in emotional interactions increases, so does the ability to discriminate between an interaction with another

interactions increases, so does the ability to discriminate between an interaction with another social being and an inanimate object. Through this discrimination, the child recognizes patterns about his/her world and demonstrates an emerging ability to assign meaning to various acts of communication and symbolic representation. During this stage, a child’s genuine desire for engaging and relating begins to emerge, without signs of distress or withdrawal, affording more opportunities for

begins to emerge, without signs of distress or withdrawal, affording more opportunities for increased reciprocal communication. The third stage, intentionality and two-way communication, is marked by the child beginning to interpret emotions as “signals” of communication. By 6 months of age, caregivers and babies begin to engage in intentional or purposeful communication where caregivers read and respond to children’s emotions and, in turn, require them to read and respond to theirs. The result

respond to children’s emotions and, in turn, require them to read and respond to theirs. The result is a back-and-forth flow of emotional signaling, which is referred to as a “circle of communication.” As the child approaches 8 months of age, circles of communication are mastered and become longer and more frequent, expanding the child’s understanding of interactions as following a causal and logical pattern, mimicking the turn-taking pattern of more complex and later developing skills such as

pattern, mimicking the turn-taking pattern of more complex and later developing skills such as in maintaining a conversation.

Between 9 and 18 months of age, children begin to master the fourth stage of the FEDCs, social problem solving, mood regulation, and formation of a sense of self. In this stage, two-way reciprocal communication is used to solve problems and achieve a desired goal (e.g., pointing to direct others’ attention or to obtain a desired object). Developing emotional maturity at this stage allows for an increase in shared social problem solving, where a child considers not only his/her own thoughts and

in shared social problem solving, where a child considers not only his/her own thoughts and beliefs but also the thoughts and desires of another individual and engages in negotiations during play and communication. Further, the emergence of skills in regulating mood and behavior allows a child to rapidly recognize and adjust his/her emotional signals. It is during this stage that children begin to develop an understanding of cause and effect and become more aware of complex patterns of

begin to develop an understanding of cause and effect and become more aware of complex patterns of communication leading to an early sense of self. They begin to refer to themselves as “I” or “me” and others as representing “you.” This sense of self and others leads to early empathetic reasoning or a theory of mind. By one and half years of age, the child’s development progresses into the fifth stage of FEDCs, creating symbols and using words and ideas. Through joint attention and complex

stage of FEDCs, creating symbols and using words and ideas. Through joint attention and complex emotional signaling the child learns to separate perceptions from actions and begins to pair mental constructs, or images, with a linguistic or gestural symbol. Communication becomes meaningful and pretend play becomes more imaginative (e.g., a block as a car or a pan as a hat). A better understanding of the function of words and symbols emerges, and a child learns that words and actions communicate

of the function of words and symbols emerges, and a child learns that words and actions communicate ideas, convey mental and physical states, and signal intent. As a child progresses through the second year of life, at approximately two and a half years of age, he/she enters into the sixth stage of FEDCs, emotional thinking, logic, and a sense of reality. The child begins to connect symbols and ideas in a logical manner. The ability to link an internal to an external idea emerges as well as a

ideas in a logical manner. The ability to link an internal to an external idea emerges as well as a child’s sense of events across time. As the child’s logical thinking expands, higher-cognitive skills emerge such as inventing characters or games and following the rules of another’s game. Assessment of the child’s functional capacity at each of the aforementioned stages forms the core of the DIR® model and further informs treatment at each stage through child-centered, interactive, and guided

model and further informs treatment at each stage through child-centered, interactive, and guided Floortime sessions. At the heart of the intervention is the premise that through maturing emotional development, a child learns to construct his/her knowledge of the world, learning to construe multiple representations or symbols for events, eventually leading to reciprocal social competence through an understanding of the self and others (Greenspan and Wieder 2006).

**Goals and Objectives** Two common goals are at the heart of the Floortime approach: (1) following the child’s lead, identifying that child’s unique processing style and/or interests in the environment, and (2) bringing the child into a shared world, using two-way intentional and reciprocal interactions (Greenspan and Wieder 2006). In addition, three cornerstones have been identified as essential to participation in the program. First, relationships are formed through emotional and meaningful

to participation in the program. First, relationships are formed through emotional and meaningful interactions and are the context for learning that leads to the development of language, cognition, and social skills. Second, motor and sensory processing capacities are varied in children, and these variations affect the emotional processing that goes along with interpreting and modulating sensory information. In essence, children vary in the way they process information, thereby making their

information. In essence, children vary in the way they process information, thereby making their availability for learning and relating individually unique. Finally, progress across all developmental areas should be viewed as interrelated. Considering these three cornerstones the main goal of the Floortime approach is to increase a child’s capacity for thinking of themselves as intentional and interactive individuals as they progress through mastery of the six FEDCs described above (Greenspan

individuals as they progress through mastery of the six FEDCs described above (Greenspan and Wieder 2006). The initial step is to administer a comprehensive interdisciplinary assessment of the child’s developmental capacities within the context of his/her unique sensory processing profile, the dynamic of his/her family relationships, as well as his/her interactive patterns (Greenspan and Wieder 1999). A functional developmental profile is derived from clinical observations of interactions with

A functional developmental profile is derived from clinical observations of interactions with both clinicians and parents, chart reviews, interviews with other care providers, assessments across disciplines (speech-language pathology, occupational therapy, physical therapy, etc.), a developmental history, a review of current programs, as well as a biomedical evaluation. Following the generation of a functional developmental profile, a comprehensive DIR® intervention program is developed with

of a functional developmental profile, a comprehensive DIR® intervention program is developed with goals that are individualized to the unique profile of the child while considering functioning across the six areas of functional emotional development. The foundational goal is meeting the child’s need for a connection with others by providing stable and secure relationships with providers. Upon the foundation of ongoing emotional interactions with consistent care providers, individualized

the foundation of ongoing emotional interactions with consistent care providers, individualized therapeutic goals can be designed to specifically address the child’s functional developmental level, his/her individual differences in sensory processing, motor planning, and sequencing, as well as specific skills in the areas of speech and language and general education. Lastly, the authors highlight the importance of continual team and family consultation as well as ongoing assessment of core

the importance of continual team and family consultation as well as ongoing assessment of core deficits as well as the functional developmental capacities, which further informs the progression and predicted outcome of an individualized DIR® program.

**Treatment Participants** The DIR®/Floortime approach was designed for children and adolescents with developmental differences, specifically, socioemotional deficits such as those often observed in ASD. It is appropriate for individuals who are verbal or nonverbal and with a diagnosis of ASD (Ingersoll et al. 2005) or related sociocommunicative disorders. While there are no prerequisite skills necessary to begin a DIR® program, researchers have found that individuals who benefit most from

necessary to begin a DIR® program, researchers have found that individuals who benefit most from this treatment tend to present as having a specific profile, quite possibly allowing them to be more capable of learning to relate and interact with intentionality and symbolically. The children who have a more positive prognosis with the DIR® approach are those that have demonstrated some capacity for joint attention and an emerging ability for using gestures in an affective interaction. In

for joint attention and an emerging ability for using gestures in an affective interaction. In addition, they typically demonstrate some form of functional language use or some degree of pretend play (Greenspan and Wieder 1997). Lastly, while this approach has typically been implemented with toddlers, recognizing early intervention leads to better outcomes for children who are identified early as having developmental delay (Landa et al. 2007), it can also be used with older adolescents with

as having developmental delay (Landa et al. 2007), it can also be used with older adolescents with autism who have some functional capacity at each of the six FEDCs, but continue to struggle with higher-level thinking. For older children, this model is typically implemented within a school program or in community environments that purport to foster and facilitate social interaction (Greenspan and Wieder 2006).

**Treatment Procedures** A comprehensive DIR® program typically involves a home-based program, an educational setting-based program, as well as the addition of specialized therapies such as speech and language, occupational, physical, and/or certain biomedical therapies, depending on the needs of the child (Greenspan and Wieder 2006). The mean age for entry into a DIR® program is typically 36 months, ideally beginning as early as 22 months (NRC 2001) or immediately following identification of

ideally beginning as early as 22 months (NRC 2001) or immediately following identification of key strengths and challenges in affective reasoning, sensory modulation and processing, symbol formulation, and motor planning through a comprehensive, interdisciplinary assessment. However, this approach is also used for older children and adolescents who demonstrate developmental differences, particularly in the area of social emotional relatedness. Floortime training and mentoring can be implemented

in the area of social emotional relatedness. Floortime training and mentoring can be implemented in the home or clinical setting by a trained professional in the discipline of speech-language pathology, psychology, or a person with training and expertise in the application of the Floortime approach. Eventually parents are trained to implement these techniques as well. Duration of intervention ranges from 10 to 25 h per week (NRC 2001). One pilot study has suggested that implementation of the

from 10 to 25 h per week (NRC 2001). One pilot study has suggested that implementation of the approach by parents for as little as 15 h a week can potentially produce both positive outcomes and remain cost-effective for families (Solomon et al. 2007). However, one limitation noted that, for children whose parents spent less than the prescribed time implementing the program, there was less progress in the functional developmental level observed, supporting the importance of duration and

progress in the functional developmental level observed, supporting the importance of duration and frequency of treatment, as suggested by the NRC (2001). The most common technique applied in the DIR® model is Floortime interactions, which occur both at home between clinician and child as well as between parent and child. These sessions are designed to be approximately 20 minutes per session and are ideally spontaneously interspersed throughout the day for a frequency of at least eight

and are ideally spontaneously interspersed throughout the day for a frequency of at least eight sessions. Once the child has mastered the initial functional developmental capacities required for interaction (e.g., joint or shared attention and can complete multiple circles of communication), peer play sessions can be introduced to facilitate shared problem solving, play negotiation, and the exchange of symbols, gestures, or words. Additional structured and semi-structured sessions are

the exchange of symbols, gestures, or words. Additional structured and semi-structured sessions are implemented to address specific skills in the areas of motor, sensory and spatial skills, balance and coordination, and visuospatial functioning.

Several strategies specific to DIR Floortime have been identified as techniques for promoting therapeutic relationships which in turn foster continued functional social emotional and sociocognitive development. These are outlined in Floortime Strategies to Promote Development in Children and Teens (Davis et al. 2014). The highlighted strategies include, but are not limited to, intervention techniques to support: the attunement of relationships, securing connections, responding and expanding to

to support: the attunement of relationships, securing connections, responding and expanding to reciprocal bids for communication, fostering pretend and symbolic play, and challenging and reflecting upon interactions to foster more complex thinking. There is a clear interdisciplinary and collaborative effort inherent in the DIR® approach, allowing a plan to be individualized to each child’s unique functional developmental profile. Specialized therapeutic services, such as speech-language

unique functional developmental profile. Specialized therapeutic services, such as speech-language pathology, occupational, and/or physical therapy, are implemented, as needed, in addition to Floortime sessions. Several components of the DIR® model, however, are implemented or facilitated by parents. The affect-based curriculum is one such component, which is specifically designed to include highly motivating semi-structured, structured, and spontaneous activities that are based on a common

motivating semi-structured, structured, and spontaneous activities that are based on a common goal of sharing affect and attention while simultaneously focusing on the foundations of language, such as phonology, syntax, grammar, and semantics (Greenspan and Wieder 2006).

**Efficacy Information** Efficacy of the DIR® model has been measured using the Functional Emotional Assessment Scale (FEAS) for the child and the caregiver, by clinical measurement of the Functional Emotional Development Level (FEDL), or the child’s functioning according to the six developmental levels suggested by Greenspan and Wieder (1997) as well as in overall presentation and severity of symptoms in autism. In a retrospective chart review of 200 cases conducted by Greenspan and Wieder

symptoms in autism. In a retrospective chart review of 200 cases conducted by Greenspan and Wieder (1997), it was reported that children’s progress could be organized into three outcome areas of the intervention. Fifty-eight percent of the cases were interpreted as having good to outstanding outcomes, 25% of the cases had medium outcomes, and 17% demonstrated ongoing difficulties. The conclusions of this review suggest that a small subgroup made progress in learning to relate to others,

of this review suggest that a small subgroup made progress in learning to relate to others, communicate, think creatively and abstractly, and showed an increase in emotional understanding and empathy, while other cases, measured as having more severe symptoms, continued to have difficulties despite intervention. Limitations noted in this chart review included variability in the assessment procedures used for the 200 children, the limitations associated with a case study design, and a small

used for the 200 children, the limitations associated with a case study design, and a small sample size, therefore suggesting that these results could not be definitively generalized to the greater population with ASD. Later, a 10–15-year follow-up of a subgroup of children with ASD who received the DIR® intervention program was conducted by the same authors. This study revisited 16 in the subgroup of children who were reported to have good to outstanding outcomes from the earlier chart review

of children who were reported to have good to outstanding outcomes from the earlier chart review of 200 cases (Greenspan and Wieder 1997). Conclusions from the follow-up study indicated that most individuals from that subgroup maintained the progress in the areas of social relatedness, creative thinking, and empathy, suggesting that early implementation of the DIR® approach may have effects later into adolescence. Limitations included questions about the generalizability to the larger

later into adolescence. Limitations included questions about the generalizability to the larger population of children with ASD, the sample size, and extraneous factors that could not be controlled for, such as other interventions implemented across the years (Wieder and Greenspan 2005).

In 2005, Ingersoll and colleagues examined the effects of the Developmental Social-Pragmatic model (DSP) on the use of spontaneous functional communication of three children with ASD between the ages of 2 and 3 years of age. Through a single subject-multiple baseline design, trained therapists implemented a DSP model of treatment, which included the DIR®/Floortime approach, Hanen program, SCERTS model, and responsive teaching approaches. The children received treatment twice weekly for 10

model, and responsive teaching approaches. The children received treatment twice weekly for 10 weeks, followed by a 1-month follow-up to assess generalization. The authors found that two of the three children demonstrated gains in spontaneous language use after treatment began that was maintained and generalized across new treatment settings. The third child exhibited gains in spontaneous communication; however, he also demonstrated an increase in his baseline, thereby confounding the

communication; however, he also demonstrated an increase in his baseline, thereby confounding the interpretation that his gains could be solely attributed to the DSP intervention. The conclusions of this study speak to the strength in the application of this research model and support evidence for DSP models implemented by specialists in the field of speech and language as well as the use of spontaneous functional communication as a preferred outcome measure. In addition, progress in

of spontaneous functional communication as a preferred outcome measure. In addition, progress in spontaneous communication following the use of the DSP model for both verbal and nonverbal children with ASD was found. Limitations included the absence of a follow-up session for one child, a failure to explore generalization to more naturalistic settings, as well as an inability to control for the therapists being the sole providers of the DSP approach throughout the duration of treatment.

Further support for the DIR®/Floortime approach was found by Solomon et al. (2007) who conducted a pilot study that focused on training and consultation for parents implementing the Floortime approach across an 8- to 12-month program. Their study found significant gains for 45.5% of the children enrolled as indicated by an increase in their overall FEAS score. In addition, no significant changes in the caregivers FEAS scores were observed, suggesting that parent’s participation was appropriate

in the caregivers FEAS scores were observed, suggesting that parent’s participation was appropriate for implementing the relationship-focused intervention. Mahoney and Perales (2005) also reported that the parent implementation of the relationship-based intervention model for children with pervasive developmental disorder (PDD) was effective, encouraging the caregivers to provide more responsive interactions with their child, which in turn led to more than two thirds of the children

responsive interactions with their child, which in turn led to more than two thirds of the children demonstrating an increase in their targeted developmental behaviors. The research published on the DIR® model suggests that parent education, training, and provider roles are factors that positively influence the outcome of changing pivotal behaviors in children treated with this approach (Mahoney and Perales 2005; Solomon et al. 2007). Another factor affecting the outcome of treatment is the

and Perales 2005; Solomon et al. 2007). Another factor affecting the outcome of treatment is the amount of time spent with the child implementing Floortime (NRC 2001; Solomon et al. 2007). By 2010 there was some research supporting positive outcomes for a subgroup of children participating in early DIR® intervention, with most research including case studies and chart reviews, which indicated the need for further and more stringent research models. Based on the National Autism Center’s first

need for further and more stringent research models. Based on the National Autism Center’s first phase of the National Standards Report (2009), developmental and relationship-based approaches were considered to have emerging evidence, further highlighting the need for more research examining the outcomes of such programs for addressing the individuals with ASD. In 2015, Phase Two of the National Standards Report (2015) was published providing further confirmation that the DIR/Floortime model

Standards Report (2015) was published providing further confirmation that the DIR/Floortime model has emerging evidence, suggesting that approximately seven studies indicate beneficial intervention effects for a set of interventions categorized as developmental and relationship-based approaches; however, more rigorous research is still needed to draw firm conclusions regarding the overall efficacy of this model. In 2011, a pilot randomized controlled trial, conducted by Pajareya and

efficacy of this model. In 2011, a pilot randomized controlled trial, conducted by Pajareya and Kopmaneejumruslers, focused on parent training and confirmed that the addition of home-based, parent-led Floortime sessions at an average of 15.2 h per week across 3 months led to clinically significant gains in social emotional functioning. Additionally, since 2011 one study has also demonstrated the effectiveness of training the caregiver in the implementation of DIR/Floortime strategies. This

the effectiveness of training the caregiver in the implementation of DIR/Floortime strategies. This study examined the efficacy of implementation of the home-based Play and Language for Autistic Youngsters (PLAY) Project and demonstrated that there were significant gains in functional development reflected in the diagnostic categories on the Autism Diagnostic Observation Schedule (ADOS) as well as large treatment effects for parent-child interactional behaviors (Solomon et al. 2014). One

well as large treatment effects for parent-child interactional behaviors (Solomon et al. 2014). One additional study identified significant gains in discrete social skills, including: turn taking; reciprocal, or two-way, communication; understanding cause and effect; and emotional thinking following intensive early intervention using the Floortime approach (Lal and Chhabria 2013).

**Outcome Measurement** The DIR® model uses two outcome measures, the Functional Emotional Assessment Scale (FEAS) and the Greenspan Social Emotional Growth Chart (SEGC), to assess baseline levels at the initial evaluation, measure progress at follow-up sessions, and establish outcomes of the therapy (NRC 2001). The initial evaluation of a child should include developing a profile of that child’s individual functioning when compared to the six stages of emotional development. Visual-spatial

individual functioning when compared to the six stages of emotional development. Visual-spatial and motor planning should also be assessed to determine the child’s ability to process information (Greenspan and Wieder 2006). The FEAS is a criterion-referenced tool for measuring functional emotional capacities in children ages 7 months through 4 years of age. More specifically, the FEAS systematically assesses the child’s ability to negotiate play activities in relation to people or objects, to

assesses the child’s ability to negotiate play activities in relation to people or objects, to self-regulate mood and attention, to form attachments with the caregiver, to use emotional and communicative reciprocity, and to represent emotions, ideas, and emotional thinking within the context of play interactions from videotaped samples. A caregivers’ capacity to support development in the aforementioned areas of emotional development is also assessed (Greenspan and DeGangi 2001). In addition to

areas of emotional development is also assessed (Greenspan and DeGangi 2001). In addition to the two measures noted above, continued assessment of the child’s functioning in each of the stages of FEDCs informs the direction of treatment as well as progress across developmental areas (Greenspan and Wieder 2006).

**Qualifications of Treatment Providers** The DIR®/Floortime model is considered to be a comprehensive and individualized approach that can be developed and adjusted according to the child’s individual differences, family dynamics, and level of development. The development of the program requires participation of several disciplines: speech-language pathologists, occupational or physical therapists, early educators and/or special educators, and a therapist trained in intensive Floortime work

early educators and/or special educators, and a therapist trained in intensive Floortime work (Greenspan 1992a as cited in Greenspan and Wieder 1997). Although multiple care providers with expertise in several disciplines are required for the development and implementation of a comprehensive DIR® program, parents play an essential role as providers of spontaneous Floortime sessions throughout the day (Greenspan and Wieder 2006). Additionally, while several specialists with relevant training in

day (Greenspan and Wieder 2006). Additionally, while several specialists with relevant training in his/her area of expertise may cooperate in implementing the Floortime approach, the application of a comprehensive DIR® approach should be managed and overseen by a specialist from a relevant discipline, who has training in applying DIR® theory. The Interdisciplinary Council on Developmental and Learning Disorders (ICDL) provides a few training opportunities for licensed professionals from several

Disorders (ICDL) provides a few training opportunities for licensed professionals from several disciplines, such as speech-language pathology, occupational and physical therapy, as well as social work, to name a few. Among the training opportunities offered, there is a DIR® introductory level course, a DIR® beginning course, as well as an intensive DIR® certification program. Information regarding further information and training opportunities on the DIR® model can be found at www.icdl.com.

**Fludac**  **Fluency and Fluency Disorders** Diane R. Paul Clinical Issues in Speech-Language Pathology, American Speech-Language-Hearing Association, Rockville, MD, USA

**Synonyms** Cluttering; Disfluency; Dysfluency; Nonfluency; Stammering; Stuttering  **Definition** Fluency is the aspect of speech production that refers to continuity, smoothness, rate, and effort (American Speech-Language-Hearing Association [ASHA] n.d.). Stuttering is the most common fluency disorder. Stuttering is an interruption in the forward flow of speech and is characterized by repetitions (sounds, syllables, words, phrases), sound prolongations, blocks, interjections, and revisions,

(sounds, syllables, words, phrases), sound prolongations, blocks, interjections, and revisions, which may affect the rate and rhythm of speech. These disfluencies may be accompanied by physical tension, negative reactions, secondary behaviors, and avoidance of sounds, words, or speaking situations (ASHA 1993; Yaruss 2007).

**Incidence and Prevalence** The lifetime incidence of stuttering is approximately 5% or higher (Mansson 2000; Yairi and Ambrose 2013). Among children, the incidence reaches a rate of 8.5% by 3 years and 11% by 4 years (Reilly et al. 2013). Stuttering is more common among males than females. Among elementary school-age children, it is estimated that boys are three to four times more likely to stutter than girls (Craig et al. 2002). The estimated prevalence rate for stuttering across ages is

stutter than girls (Craig et al. 2002). The estimated prevalence rate for stuttering across ages is 0.72% (Craig et al. 2002).

**Types of Disfluencies** All speakers have disfluencies, which may include hesitations for language formulation including silent pauses as well as insertion of word fillers (e.g., “The book is like new”) and nonword fillers (sometimes called interjections, e.g., “My friend is uh driving”); other examples also may include whole-word repetitions (e.g., “Go-go get that bottle”) and phrase repetitions or revisions (e.g., “Don’t tell me- don’t tell me again”). These may be considered “more

or revisions (e.g., “Don’t tell me- don’t tell me again”). These may be considered “more typical,” nonstuttering disfluencies when there are a small number. Less typical, more stuttering-like disfluencies include part-word or sound/syllable repetitions (e.g., “Give me the p-p-p pencil”), prolongations (e.g., “Sssssssstay here with me”), and blocks (i.e., silent fixations or inability to initiate sounds). In addition, stuttering-like disfluencies are usually accompanied by decidedly greater than

In addition, stuttering-like disfluencies are usually accompanied by decidedly greater than average duration, effort, tension, or struggle than are typical disfluencies.

**Developmental Progression** Stuttering most often begins during childhood. Some young children go through a period of excessive disfluency. However, they go on to display typical fluency skills as their language abilities develop. A large majority of early stuttering remits without clinical intervention, although recovery estimates vary greatly from 6.3% (Reilly et al. 2013) to 89% (Yairi and Ambrose 1999).

**Impact of Stuttering** Stuttering can greatly interfere with school, work, or social interactions. Children and adults who stutter may report fear or anxiety about speaking and frustration or embarrassment with the time and effort required to speak. Despite popular beliefs, emotional problems or emotional trauma do not cause stuttering. However, dealing with stuttering can result in significant emotional reactions and avoidance behavior. Stuttering is often more severe when there is

emotional reactions and avoidance behavior. Stuttering is often more severe when there is increased pressure to communicate (e.g., giving a presentation, interviewing for a job).

**Causes** The cause of stuttering is presently unknown but may reflect subtle underlying differences in brain structure and function, particularly when an individual is processing and producing language. Stuttering may have a genetic component and the risk of stuttering is elevated in families having other members with persistent stuttering. Stuttering can also occur following neurological trauma (e.g., brain injury) and following psychological trauma (e.g., posttraumatic stress disorder).

**Cooccurrence** Stuttering can cooccur with other disorders. For example, although there is little systematic evidence describing disfluency in autism spectrum disorder (ASD), increasing numbers of case reports indicate atypical, stuttering-like behaviors that are additionally distinguished by unusual features, such as repetition of final segments of words (Paul et al. 2005; Shriberg et al. 2001; Sisskin and Wasilus 2014). Children who stutter may show expressive language problems because of

Sisskin and Wasilus 2014). Children who stutter may show expressive language problems because of a tendency to avoid speaking. Less talking and reduced linguistic complexity may result (Silverman and Bernstein Ratner 2002).

**Terminology** The term disfluency (sometimes spelled dysfluency) often is used synonymously with stuttering. However, the term disfluency refers to typical and atypical breaks in the forward flow of speech, while stuttering refers to a fluency disorder, characterized by a high number of less typical disfluencies and usually a greater effort to speak. Stammering is synonymous with stuttering and is the common term for the disorder in Great Britain. In North America, the term stammering is

and is the common term for the disorder in Great Britain. In North America, the term stammering is rarely used. Secondary behaviors are also known as accessory behaviors, secondary mannerisms, secondaries, concomitant behaviors, or extraneous behaviors. For example, a person may tap his foot or nod her head while talking in a misplaced effort to speak fluently. Secondary behaviors usually start coincidentally and then become incorporated when the person notices an improvement in fluency. If a

coincidentally and then become incorporated when the person notices an improvement in fluency. If a behavior appears to help, it may persist, even though it loses its effectiveness.

**Cluttering** Cluttering is another fluency disorder. Cluttering is characterized by a rapid and/or irregular speech rate, and excessive disfluencies, which are usually of the more typical type (revisions and overuse of filler words, such as “um”). The speech of a person who clutters often contains pauses in unusual places and unusual prosody (St. Louis and Schulte 2011). Other symptoms may include language or phonological errors. Cluttering has been documented in children with autism (Scaler

language or phonological errors. Cluttering has been documented in children with autism (Scaler Scott 2011).

**Speech-Language Pathologists** Speech-language pathologists (SLPs) are the professionals who perform fluency assessments and intervention individually or in groups. SLPs also serve as members of collaborative teams that may include the individual, family/caregivers, educators, and other relevant persons.

**Fluent Aphasia**  **Fluent Speech**  **Fluid Intelligence** Francesca Happé MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

**Synonyms** Fluid reasoning  **Definition** Fluid intelligence (abbreviated Gf) is the ability to reason quickly, think abstractly, and problem-solve, independent of acquired knowledge. Cattell (1971) proposed two factors underlying general intelligence: fluid and crystallized intelligence. Tests of fluid intelligence tap current reasoning ability and are considered to be more “culture-fair,” being less affected by differences in learning experience or test familiarity. Raven’s Progressive

being less affected by differences in learning experience or test familiarity. Raven’s Progressive Matrices, and other tasks with novel stimuli, are thought to tap fluid intelligence. People with ASD often do well on certain tests thought to measure fluid intelligence, such as Raven’s Matrices (Hayashi et al. 2008) and Block Design (Shah and Frith 1993). Interpretation of these peaks in an uneven intelligence test profile has varied: many fluid intelligence tests tap visuospatial problem

uneven intelligence test profile has varied: many fluid intelligence tests tap visuospatial problem solving, which may be superior to verbal reasoning in many people with autism. Alternatively, Dawson et al. (2007) have suggested that good Raven’s Matrices scores reveal the true level of intelligence in autism, underestimated by standard IQ tests. Scheuffgen et al. (2000) suggested that people with autism may have good potential processing efficiency (as seen in fluid intelligence tests), not

autism may have good potential processing efficiency (as seen in fluid intelligence tests), not reflected in standard IQ test performance because of failure to acquire skills and knowledge through socially mediated learning. Fluid intelligence is thought to include several processes, only some of which may be superior (relative to own profile or others’) in autism; visualization and pattern recognition, for example, may be areas of skill, while ideational fluency or generativity may not.

**Fluid Reasoning**  **Fluoxetine** Carolyn A. Doyle1 and Christopher J. McDougle2,3 1Indiana University School of Medicine, Indianapolis, IN, USA 2Lurie Center for Autism, Massachusetts General Hospital, Lexington, MA, USA 3Nancy Lurie Marks Professorship in the Field of Autism, Harvard Medical School, Boston, MA, USA
 **Synonyms** Brand names: Prozac; Prozac Weekly (once-weekly dosing); Rapiflux; RECONCILE; Sarafem; Selfemra

**Indications** Fluoxetine is FDA-approved to treat major depressive disorder (MDD) in both adults and in children aged 8–18 years old, obsessive-compulsive disorder (OCD) in both adults and children aged 7–17 years old, and bulimia nervosa in adult patients. In these disorders, fluoxetine can be used both acutely and as maintenance therapy. It is approved for adults only in the acute treatment of panic disorder with and without agoraphobia. In combination with olanzapine, marketed as Symbyax,

panic disorder with and without agoraphobia. In combination with olanzapine, marketed as Symbyax, it is approved for the acute treatment of depressive episodes associated with bipolar I disorder and treatment-resistant depression in adults only (Lilly 2009). Fluoxetine is not approved for the treatment of autism spectrum disorders (ASDs), which include the DSM-IV-TR diagnoses of autistic disorder, Asperger’s disorder, and pervasive developmental disorder, not otherwise specified (PDD-NOS). The

Asperger’s disorder, and pervasive developmental disorder, not otherwise specified (PDD-NOS). The decision to use fluoxetine 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, irritability, 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

basis by the treating practitioner. This will be discussed in more detail in the “Clinical Uses” section.

**Mechanisms of Action** Fluoxetine is a selective serotonin reuptake inhibitor (SSRI). Normally, serotonin is released from the presynaptic axon terminal to travel across the synaptic cleft and attach to the postsynaptic axon terminal. Any excess serotonin remaining in the cleft is picked up by the serotonin reuptake transporter in the presynaptic axon to be degraded and recycled. It is hypothesized that a depletion of serotonin available to act on the postsynaptic axon results in symptoms

that a depletion of serotonin available to act on the postsynaptic axon results in symptoms experienced in mood and anxiety disorders, like sadness, nervousness, guilt, loneliness, apathy, and avolition. Fluoxetine attaches itself to the serotonin reuptake transporter and prevents whatever serotonin remains in the cleft from being degraded. The excess serotonin is free to attach to postsynaptic receptors and exert its intended effects (Stahl 2008). Although fluoxetine begins acting immediately

and exert its intended effects (Stahl 2008). Although fluoxetine begins acting immediately to inhibit serotonin reuptake, its antidepressant and anxiolytic effects are often not experienced for up to 6–8 weeks. This is thought to be due to gradual changes fluoxetine makes on serotonin receptor sensitivity. It is believed that the decreased amounts of serotonin found in mood and anxiety disorders cause the postsynaptic axon to upregulate the number of postsynaptic axonal receptors expressed. In

cause the postsynaptic axon 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 fluoxetine enters the picture, the level of serotonin in the cleft rises. Postsynaptic receptors recognize 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

about the changes in the synaptic 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 completed, reflecting the amount of time before many patients begin feeling relief from their symptoms (Stahl 2008). Fluoxetine’s antagonism of the postsynaptic 5-HT2C receptor results in some of its unique therapeutic effects. When serotonin attaches to the 5-HT2C receptor, it blocks

some of its unique therapeutic effects. When serotonin attaches to the 5-HT2C receptor, it blocks the release of neurotransmitters norepinephrine and dopamine in the brain. When fluoxetine blocks the postsynaptic 5-HT2C receptor, norepinephrine and dopamine are instead released and exert their effect in the prefrontal cortex. The effect is activating, often leading patients to feel more energized, less fatigued, and to have improved concentration and attention. Fluoxetine is therefore

energized, less fatigued, and to have improved concentration and attention. Fluoxetine is therefore considered for patients whose constellation of symptoms includes fatigue, apathy, and avolition as opposed to nervousness, insomnia, and agitation. Other therapeutic effects from postsynaptic 5-HT2C antagonism include anorexia and anti-bulimia, particularly at higher doses of fluoxetine, and relief from bipolar depression when combined with olanzapine, a second-generation antipsychotic. Of note,

from bipolar depression when combined with olanzapine, a second-generation antipsychotic. Of note, neither olanzapine nor fluoxetine alone is approved for the treatment of bipolar depression. However, they both antagonize the 5-HT2C receptor. This combined antagonism likely boosts norepinephrine and dopamine release in the cortex and may be what drives the antidepressant effect seen in the treatment of bipolar depression. The combination of fluoxetine and olanzapine is marketed as Symbyax with

of bipolar depression. The combination of fluoxetine and olanzapine is marketed as Symbyax with a fixed-dose ratio of fluoxetine to olanzapine, although both can be prescribed separately. Fluoxetine also weakly attaches to the norepinephrine transporter and prevents norepinephrine’s reuptake from the synaptic cleft. This may contribute to its clinical effects at higher doses. Fluoxetine inhibits the cytochrome P450 CYP 2D6 and 3A4 enzymes via the parent compound and the active metabolite. The

the cytochrome P450 CYP 2D6 and 3A4 enzymes via the parent compound and the active metabolite. The half-life of the parent compound is 2–3 days and that of the active metabolite is 2 weeks (Stahl 2008).

**Specific Compounds and Properties** N-Methyl-γ-[4-(trifluoromethyl)phenoxy] benzenepropanamine hydrochloride.  **Clinical Use (Including Side Effects)**  **FDA-Approved Clinical Uses** Fluoxetine is FDA-approved for the treatment of some mood and anxiety disorders. Mood disorders include major depressive disorder (MDD), premenstrual dysphoric disorder (PMDD), and bipolar depression. Anxiety disorders include OCD and panic disorder, with or without agoraphobia (Lilly 2009). In the treatment

include OCD and panic disorder, with or without agoraphobia (Lilly 2009). In the treatment of mood and anxiety disorders, fluoxetine is usually started between 10 and 20 mg once daily and gradually increased to 20–80 mg daily in adults (Lilly 2009). The goal of treatment is complete remission of symptoms and prevention of future relapses, so fluoxetine is taken both throughout and in between clinical relapses (Stahl 2009). Fluoxetine does not cure mood or anxiety disorders, and symptoms can

relapses (Stahl 2009). Fluoxetine does not cure mood or anxiety disorders, and symptoms can reoccur after the medicine has been stopped. In adults with MDD, fluoxetine is used to treat acute depressive episodes and as maintenance therapy between episodes (Lilly 2009). After the first episode of depression, fluoxetine should be taken for 1 year (Stahl 2009). After the second or any subsequent episodes of depression, treatment with fluoxetine may be indefinite to avoid relapse of symptoms.

episodes of depression, treatment with fluoxetine may be indefinite to avoid relapse of symptoms. Fluoxetine has also been helpful in the short-term treatment of acute depressive episodes associated with bipolar I disorder when used in combination with olanzapine (Lilly 2009). Combination therapy with set doses of fluoxetine and olanzapine is manufactured as Symbyax by Eli Lilly, although these two medications can be prescribed separate from each other. Separate dosing may allow for more

two medications can be prescribed separate from each other. Separate dosing may allow for more flexibility on the part of the prescribing clinician. Fluoxetine should not be used as monotherapy for treatment of depression associated with bipolar I disorder. The combination of fluoxetine and olanzapine is also indicated for treatment-resistant depression, referring to depression that does not respond to two separate trials of different antidepressants of adequate doses and duration within the

to two separate trials of different antidepressants of adequate doses and duration within the current episode. A once-weekly dosing of fluoxetine is marketed as Prozac Weekly for the treatment of MDD. In adults with OCD, fluoxetine is given to treat acute episodes and as maintenance therapy between episodes. Fluoxetine is also used in the acute treatment of adults with panic disorder, with or without agoraphobia. Fluoxetine can be helpful in the treatment of bulimia nervosa, an eating disorder.

agoraphobia. Fluoxetine can be helpful in the treatment of bulimia nervosa, an eating disorder. Moderate to severe bulimia nervosa, which is defined as three bulimic episodes per week within 6 months, has been shown to benefit from treatment with fluoxetine. For bulimia, fluoxetine is dosed between 60 and 80 mg daily and patients may require indefinite treatment (Stahl 2009). Regarding children and adolescents, fluoxetine is FDA-approved for the treatment of MDD in pediatric populations aged

and adolescents, fluoxetine is FDA-approved for the treatment of MDD in pediatric populations aged 8–18 years and OCD in those aged 7–17 years (Lilly 2009). In MDD, fluoxetine is given for acute depressive episodes and as maintenance therapy between episodes. The starting dose is typically between 10 mg and 20 mg/day. Due to higher plasma levels in lower weight children, the target dose may not exceed the initial dosage or much beyond. In OCD, fluoxetine is given for acute episodes and as

not exceed the initial dosage or much beyond. In OCD, fluoxetine is given for acute episodes and as maintenance therapy between episodes. The starting dose is typically 10 mg/day, increased to as high as 60 mg/day in adolescents. Lower weight children may only tolerate a lower target dose, such as 20 mg/day.

**Clinical Uses of Fluoxetine in Autism Spectrum Disorders** Regarding pediatric populations, there is limited evidence to suggest the effectiveness of fluoxetine in children and adolescents with autism. Interestingly, antidepressants have been the most commonly prescribed psychotropic medications in treating symptoms associated with ASDs (Aman et al. 2005). Given the frequent use of SSRIs in autism, it is imperative that prescribing clinicians balance the benefit of such medications in lieu

it is imperative that prescribing clinicians balance the benefit of such medications in lieu of their side effects. In 2004, the FDA released safety warnings about the increased risk of suicide-related behaviors in children and adolescents taking SSRIs, which subsequently curtailed the prescribing of SSRIs to this population (Nemeroff et al. 2007). The decision to use fluoxetine in the treatment of established clinical indications that may co-occur with autism should therefore be made on an

of established clinical indications that may co-occur with autism should therefore be made on an individual basis by the treating practitioner after careful consideration of the available data. In the only published double-blind, placebo-controlled trial using fluoxetine to treat symptoms associated with ASDs in children and adolescents, fluoxetine was found to be significantly better than placebo in reducing repetitive behaviors (Hollander et al. 2005). There was no improvement on measures of

in reducing repetitive behaviors (Hollander et al. 2005). There was no improvement on measures of speech or social interaction, and side effects were not significantly different between fluoxetine and placebo. This study used low doses of liquid fluoxetine in a population of 45 children between the ages of 5 and 16 years (mean age, 8.2 years) who met criteria for autism, Asperger’s disorder, or PDD-NOS. The starting dose began at 2.5 mg/day and was increased weekly to the target dose of 0.8

PDD-NOS. The starting dose began at 2.5 mg/day and was increased weekly to the target dose of 0.8 mg/kg/day, although the highest dose given was 0.4 mg/kg/day. Unfortunately, the remaining research in this area has been open label or retrospective, limiting further conclusions about the effectiveness of fluoxetine in treating children and adolescents with ASDs. There is no data regarding the effect of fluoxetine on anxiety, depression, hyperactivity, inattention, irritability, or aggression in

of fluoxetine on anxiety, depression, hyperactivity, inattention, irritability, or aggression in children with ASDs. In adult populations, there is minimal data supporting the use of fluoxetine in the treatment of ASDs as evidenced by only one small, placebo-controlled pilot study. This trial focused on six adult patients, five of whom had autism and one with Asperger’s disorder (Buchsbaum et al. 2001). The patients showed significant improvement of anxiety and obsessive-compulsive symptoms

al. 2001). The patients showed significant improvement of anxiety and obsessive-compulsive symptoms while on fluoxetine. There was no significant improvement in depression. The starting dose was 10 mg daily, which was gradually titrated up to 40 mg daily in most of the patients. One should be cautious in applying these findings to the greater population of adults with autism as the small number of patients included in the study limits its interpretation. Unfortunately, there is no data

number of patients included in the study limits its interpretation. Unfortunately, there is no data regarding the effect of fluoxetine on hyperactivity, inattention, irritability, aggression, or social impairment in adults with ASDs. It should be noted that the repetitive thoughts and behaviors observed in individuals with ASDs are qualitatively different from the symptoms of OCD (McDougle et al. 1995). For example, individuals with ASDs are more likely to experience compulsions of ordering,

1995). For example, individuals with ASDs are more likely to experience compulsions of ordering, hoarding, telling or asking, and touching, tapping, or rubbing. They are less likely to experience obsessions of contamination, sexual, religious, symmetry, or somatic content, unlike individuals with OCD. In the study of fluoxetine cited above, participants were rated on symptoms of OCD but no distinction was made regarding which repetitive behaviors improved.

**Side Effects** Fluoxetine’s side effect profile results from the stimulation of serotonin receptor subtypes as well as lesser actions on other neurotransmitters and enzymes. Stimulation of serotonin receptor subtypes (5-HT2A, 5-HT2C, 5-HT3, and 5-HT4) in various parts of the brain likely causes many of SSRIs’ observed side effects (Stahl 2008). A small amount of increased synaptic serotonin shortly after initiating therapy is often enough to mediate side effects, even if the clinical benefit

after initiating therapy is often enough to mediate side effects, even if the clinical benefit is not yet apparent to the patient. Therefore, it is possible that side effects may be experienced earlier than symptom relief when first starting treatment with fluoxetine (Stahl 2008). Side effects experienced may also be dose dependent (i.e., they increase as the dose increases) or time dependent (i.e., they start right after taking the medication but diminish with time) (Stahl 2009). Patients who

they start right after taking the medication but diminish with time) (Stahl 2009). 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 in children, adolescents, and young adults (ages 18–24) with MDD and other psychiatric disorders. Such risk should be carefully considered when prescribing fluoxetine in the pediatric and young adult population.

be carefully considered when prescribing fluoxetine in the pediatric and young adult population. According to Stahl (2009), gastrointestinal side effects are common and can include decreased appetite, nausea, diarrhea, constipation, or dry mouth. Sexual dysfunction is a common side effect in both men and women and is due to the effect of increased serotonin in both the brain and the region of the spinal cord regulating sexual response. In men, this includes delayed ejaculation, erectile

of the spinal cord regulating sexual response. In men, this includes delayed ejaculation, erectile dysfunction, and decreased sexual desire. In women, this includes decreased sexual desire and anorgasmia. Central nervous system side effects include insomnia or sedation, agitation, tremors, headache, and dizziness or lightheadedness. Patients may experience vasodilatation, dry mouth, diaphoresis, or abnormal vision. Increased serotonin can lead to diminished dopamine release, which may lead to

or abnormal vision. Increased serotonin can lead to diminished dopamine release, which may lead to emotional flattening, apathy, and cognitive slowing in some patients. Anorexia and weight loss have been reported when using fluoxetine, so it should be used with caution in underweight patients or those who are prone to eating disorders (Lilly 2009). Of note, SSRIs have been found to yield side effects in people with ASDs, particularly agitation, hyperactivity, aggression, and insomnia (Posey et

in people with ASDs, particularly agitation, hyperactivity, aggression, and insomnia (Posey et al. 2006). Extrapyramidal symptoms (Sokolski et al. 2004) and hypomania (Damore et al. 1998) have also been observed in case reports. These results are limited by a lack of placebo-controlled studies, although there is some evidence to suggest that children with ASDs may be more likely to develop such side effects relative to adults with ASDs (Posey et al. 2006).

**Fluoxin**  **Flutine**  **Fluvoxamine** Kate S. Perri1, Marcel Moran2, Kimberly Stigler1 and Christopher J. McDougle3,4 1Christian Sarkine Autism Treatment Center, Riley Hospital for Children, Indianapolis, IN, USA
2Indiana University School of Medicine, Indianapolis, IN, USA 3Lurie Center for Autism, Massachusetts General Hospital, Lexington, MA, USA 4Nancy Lurie Marks Professorship in the Field of Autism, Harvard Medical School, Boston, MA, USA

**Synonyms** Fluvoxamine maleate; Luvox; Luvox CR  **Indications** Fluvoxamine is FDA-approved for the treatment of obsessive-compulsive disorder (OCD).

**Mechanisms of Action** Fluvoxamine is a selective serotonin (5-HT) reuptake inhibitor (SSRI). Its efficacy in the treatment of OCD is thought to result from inhibition of the serotonin reuptake process and increased serotonergic neurotransmission (Stahl 2008). Fluvoxamine primarily inhibits the oxidative drug-metabolizing enzyme CYP1A2 and also significantly inhibits CYP3A4, CYP2C9, and CYP2C19. It is a weak inhibitor of CYP2D6 (Irons 2005; Kuzma and Black 2008). Additionally, it is a

CYP2C19. It is a weak inhibitor of CYP2D6 (Irons 2005; Kuzma and Black 2008). Additionally, it is a sigma-1 receptor agonist (Ordacgi et al. 2009). Sigma-1 receptors regulate the release of glutamate, dopamine, serotonin, norepinephrine, and acetylcholine. Fluvoxamine’s high affinity for these receptors may account for some of its effects on depression and anxiety.

**Specific Compounds and Properties** Fluvoxamine maleate has the International Union of Pure and Applied Chemistry (IUPAC) name (E)-5-methoxy-1-[4-(trifluoromethyl)phenyl]pentan-1-one O-2-aminoethyl oxime maleate and the empirical formula C15H21O2N2F3•C4H4O4 (Fig. 1). Fluvoxamine is metabolized by the liver into at least 11 products, all of which are pharmacologically inactive. It is excreted primarily as metabolites, with less than 4% of the original compound remaining. The precise CYP

primarily as metabolites, with less than 4% of the original compound remaining. The precise CYP isoenzymes involved in its metabolism are not known. There is evidence that fluvoxamine has nonlinear steady-state pharmacokinetics so that plasma concentrations are disproportionally higher when the dosage is increased. It has a mean plasma half-life of 12–22 h, which is increased by 30–50% at steady state. It has been demonstrated to be eliminated from the brain at a slower rate than from the

state. It has been demonstrated to be eliminated from the brain at a slower rate than from the plasma (2.4:1 ratio; Ordacgi et al. 2009). In vitro studies have found it to be a stronger inhibitor of serotonin reuptake than fluoxetine, but weaker than paroxetine, sertraline, citalopram, and escitalopram. It is also a weak inhibitor of norepinephrine and dopamine reuptake when compared to other serotonin reuptake inhibitors (Ordacgi et al. 2009).

**Clinical Use (Including Side Effects)** Luvox is the brand name of fluvoxamine maleate in the United States. It is available in both immediate-release (IR) and extended-release (controlled-release; CR) tablets and is FDA-approved for the treatment of obsessions and compulsions in individuals with OCD. The IR form is approved for use in patients 8 years and older, while the lowest dosage of the CR form may not be appropriate for pediatric patients (U.S. Food and Drug Administration 2011a, b).

CR form may not be appropriate for pediatric patients (U.S. Food and Drug Administration 2011a, b). Its efficacy in the treatment of OCD has been demonstrated in numerous randomized, double-blind, controlled studies. Fluvoxamine has repeatedly been shown to be more efficacious than placebo when measured by the Yale-Brown Obsessive Compulsive Scale (Y-BOCS), National Institute of Mental Health-Obsessive Compulsive (NIMH-OC) Scale, and Clinical Global Impression (CGI) scales (Ordacgi et al.

Compulsive (NIMH-OC) Scale, and Clinical Global Impression (CGI) scales (Ordacgi et al. 2009). Studies have also compared fluvoxamine to the tricyclic antidepressants clomipramine and desipramine. Fluvoxamine was found to be equally efficacious as clomipramine and more efficacious than desipramine in the treatment of OCD (Irons 2005). It has additionally been shown to be efficacious in the treatment of OCD in children and adolescents aged 8–17 years (Irons). Luvox CR was initially approved for

of OCD in children and adolescents aged 8–17 years (Irons). Luvox CR was initially approved for the treatment of social anxiety disorder, but this indication was removed from its label in 2011. However, a number of double-blind, placebo-controlled studies have shown promise for the treatment of social anxiety disorder with fluvoxamine. The results of several studies, two involving over 250 patients each, have demonstrated significantly greater improvements with fluvoxamine than with placebo,

each, have demonstrated significantly greater improvements with fluvoxamine than with placebo, using measures such as the Liebowitz Social Anxiety Scale, CGI scales, and the Hamilton Anxiety Scale. Furthermore, fluvoxamine has been demonstrated to be significantly more effective than placebo in a study of 128 children and adolescents aged 6–17 years with social anxiety disorder, separation anxiety disorder, or generalized anxiety disorder (GAD) (Irons 2005).

Fluvoxamine may also be an effective treatment for some of the behaviors associated with autism. In a randomized, double-blind study with 30 adults, 53% of the patients treated with fluvoxamine were classified as responders. There was a significant reduction in repetitive thoughts and behaviors, maladaptive behavior, and repetitive language usage in the fluvoxamine group compared to the placebo group (McDougle et al. 1996). There have been mixed results in studies reporting the use of

placebo group (McDougle et al. 1996). There have been mixed results in studies reporting the use of fluvoxamine for the treatment of autism in children. In one double-blind crossover study of fluvoxamine and placebo, 10 out of 18 children were classified as responders, while in another, improvements were shown in behaviors such as eye contact and language use (Fukuda et al. 2001; Sugie et al. 2005). However, an open-label trial and a double-blind, parallel groups comparison with placebo, which

However, an open-label trial and a double-blind, parallel groups comparison with placebo, which both administered fluvoxamine to 18 subjects, classified only 3 and 1 subjects, respectively, as responders (Martin et al. 2003; McDougle et al. 2000). Numerous studies of adults have shown benefits for the treatment of depression, panic disorder, GAD, and posttraumatic stress disorder (PTSD), for which fluvoxamine is also commonly prescribed (Irons 2005; Stahl 2008). Additionally, several

for which fluvoxamine is also commonly prescribed (Irons 2005; Stahl 2008). Additionally, several randomized, double-blind studies have demonstrated fluvoxamine’s efficacy in the reduction of binge eating, relapse of bulimia nervosa, compulsive buying, and pathological gambling (Irons). The recommended starting dose of fluvoxamine is 25 mg in pediatric patients and 50 mg in adults, taken before bed. The dose should be increased every 4–7 days in 25-mg increments in children and 50-mg increments

The dose should be increased every 4–7 days in 25-mg increments in children and 50-mg increments in adults until the maximum benefit is reached. The dose should not exceed 200 mg/day in children up to age 11 years and 300 mg/day in adolescents and adults. If the dose is more than 50 mg for the pediatric population or 100 mg for adults, it is recommended for it to be divided into two doses. With uneven doses, the larger one should be taken before bed (U.S. Food and Drug Administration 2011b).

**Side Effects** The most common adverse reactions in trials with adults with OCD and depression include nausea, somnolence, insomnia, asthenia, nervousness, dyspepsia, abnormal ejaculation, sweating, anorexia, tremor, and vomiting. Less frequent side effects include anorgasmia, decreased libido, dry mouth, rhinitis, taste perversion, and urinary frequency in individuals with OCD and agitation, depression, dysmenorrhea, flatulence, hyperkinesia, and rash in pediatric patients with OCD (U.S.

depression, dysmenorrhea, flatulence, hyperkinesia, and rash in pediatric patients with OCD (U.S. Food and Drug Administration 2011b). As with other antidepressants, fluvoxamine may result in the worsening of depressive symptoms and an increased suicide risk. It should not be used in combination with monoamine oxidase inhibitors or within 14 days of ending treatment with one. Additionally, tizanidine, thioridazine, alosetron, and pimozide should not be coadministered with fluvoxamine. Serotonin

thioridazine, alosetron, and pimozide should not be coadministered with fluvoxamine. Serotonin syndrome and neuroleptic malignant syndrome have also been reported with SSRIs, including fluvoxamine. There is evidence that the CR form has a lower maximum plasma concentration, reducing the risk of adverse effects (Ordacgi et al. 2009).

**Fluvoxamine Maleate**  **Fluxil**  **fMRI**  **Fontex**  **Food Intolerance** Susan Hyman Developmental and Behavioral Pediatrics, Division Chief Neurodevelopmental and Behavioral Pediatrics, University of Rochester Golisano Children’s Hospital, Rochester, NY, USA

**Definition** Food intolerance refers to the occurrence of physical symptoms relative to ingestion of foods that are not the result of conventional IgE-mediated food allergy. IgE is the subclass of immunoglobulins that cause an individual to make antibodies to food or other compounds that result in allergic symptoms. Food intolerance may be more common than true food allergy. The physical symptoms of food intolerance may impact the skin and the gastrointestinal and respiratory tracts. Central

of food intolerance may impact the skin and the gastrointestinal and respiratory tracts. Central nervous system symptoms like migraines may occur. Food intolerance may manifest in a delayed fashion, unlike IgE-mediated allergy. Food intolerance is attributed to the following mechanisms:

1.  Absence of an enzyme necessary for metabolism of an ingested food: An example of this is lactose intolerance. Approximately 10% of Americans are intolerant of the milk sugar, lactose, because of an absence of the enzyme necessary for digestion with resultant symptoms of diarrhea, bloating, and intestinal gas.

2.  Symptomatic response to a food or food ingredient based on genetic susceptibility: An example of this is intolerance of natural salicylates. Salicylic acid is the active ingredient in aspirin. Approximately 2.5% of Europeans are intolerant of natural salicylates found in various fruits and vegetables. Other chemicals in food that are associated with intolerance include food additives like monosodium glutamate, nitrites, and artificial food colors.

3.  Symptomatic response to a chemical compound in food based on a co-occurring condition: An example of this is development of physical symptoms relative to histamine ingestion when the enzymatic degradation of this vasoactive amine is impaired by an imbalance of intestinal flora or a medication prescribed for another condition.
4.  Non-IgE-mediated immune response: The utility of measuring IgG to foods is controversial and at present does not guide therapy.

Food intolerance needs to be clinically distinguished from IgE-mediated food allergy. This is done by history and physical examination, allergy testing, elimination diets, and double-blind food challenges. Unlike food allergy, many people with food intolerance do not have symptoms with small and infrequent exposures. Dietary avoidance is the treatment. Families of children in Norway later diagnosed with autism spectrum disorders report more food allergies and intolerance in the first 3 years of

with autism spectrum disorders report more food allergies and intolerance in the first 3 years of life (Bresnahan et al. 2015).

**Forced-Choice Preference Assessment**  **Formal Complaint** Margaret St. John Quinnipiac University School of Law, Hamden, CT, USA  **Definition**  **In General** A formal complaint is an initial filing that starts a civil lawsuit and usually states the basis for a court’s jurisdiction, the basis for a plaintiff’s claim, and a demand for relief.

**Individuals with Disabilities Education Act** Individuals (typically parents) may submit a formal complaint to a child’s school district and/or state education agency alleging violation of the Individuals with Disabilities Education Act. Any party has an opportunity to present a formal complaint regarding the identification, evaluation or educational placement (IEP) of a child, or the provision of a free appropriate public education (FAPE) to such child. The complaint must be filed within 2

of a free appropriate public education (FAPE) to such child. The complaint must be filed within 2 years of the date when the parent or public agency knew or should have known about the alleged action that forms the basis of the complaint. When filing a complaint alleging that a local educational agency has violated a requirement of the Individuals with Disabilities Education Act, the complaint must be written, signed, and must cite the facts upon which the allegation is made and the specific

must be written, signed, and must cite the facts upon which the allegation is made and the specific statutory requirement that was violated. The state educational agency must resolve the issues of the complaint within 60 days after it is filed.

**Americans with Disabilities Act** If an individual believes that he or any other person has suffered discrimination, he may file a complaint with the Department of Justice. Such a complaint should include contact information, the name of the business, organization, institution, or person that perpetrated the alleged discrimination and a description of the discrimination.

**FOT**  **France and Autism** 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

**Historical Background** The first approach to autism in France was based on the psychoanalytic model, in terms of etiology as well as in treatments. Regarding etiology, the parents’ role in the pathology’s development was emphasized leading to treatments based on that interpretation. Therefore, in the extent that the child’s autism was supposed to be due to relational difficulties, psychotherapy prevailed for many years. There were mostly institutional interventions, implemented in day

prevailed for many years. There were mostly institutional interventions, implemented in day hospitals. They were initiated by psychiatrists such as Roger Misès and Serge Lebovici. Despite the assertions that psychoanalysts used a multifactorial approach, the treatments were essentially psychological leaving little room for educational aspects. Above all, they preferred a nondirective attitude saying that it was better to wait for “the emergence of desire” rather than to provide teaching. The

that it was better to wait for “the emergence of desire” rather than to provide teaching. The parents were not directly involved in their child’s treatment and had to personally undergo psychotherapy. Only a few facilities took the different dimensions of autism into account and carried out more complete medical explorations. However, in most cases this did not have a real impact on treatment. At the time, parents were not well informed on autism and when the first parent association, ASITP,

At the time, parents were not well informed on autism and when the first parent association, ASITP, was founded in the 1960s, it mainly focused on establishing new day hospitals in which this type of approach was implemented.

In France, Gilbert Lelord, who passed away early in the year 2017, was the great pioneer of the scientific approach to autism. He was surrounded by a team of clinicians and researchers among who Catherine Barthélémy, his most brilliant collaborator, gave a quality extension to his initial work. This team largely contributed to changing the image of autism in France by defending the biological cause of this condition. Numerous studies carried out by the INSERM 316 unit have demonstrated that

cause of this condition. Numerous studies carried out by the INSERM 316 unit have demonstrated that childhood autism is not a psychological pathology but linked to a developmental disorder of the nervous system. Clinicians gathered extensive patient information while providing support to families. Collaboration with the research team resulted in creating the first standardized tools for assessment of children with autism (Barthélémy and Gilbert 1991; Rogé 2017). The different research protocols

of children with autism (Barthélémy and Gilbert 1991; Rogé 2017). The different research protocols helped to better understand the neurophysiological functioning and to determine subgroups of patients. All of this work and research underpinned the reflection on a new therapeutic approach, which culminated with the development of exchange and development therapy (Barthélémy et al. 1995). Parent associations have also significantly contributed to the improvement of people with autism’s situation

have also significantly contributed to the improvement of people with autism’s situation in France even though they initially opposed one another, some continuing to defend the psychiatric approach, while others, very militant, demanded an adapted education like those advocated in most other countries. In the 1990s, things began to change. Government authorities finally took parents’ repeated requests into account. Various commissions were organized. From then on, the French classification of

into account. Various commissions were organized. From then on, the French classification of Mental Diseases CFTMEA (1993), which still classified autism in infantile psychoses, was abandoned by the Ministry of Health. The World Health Organization’s CIM10 became the new classification reference. At that time, three major diagnostic centers were recognized, one in Tours, one in Toulouse, and one in Paris. Subsequently resource centers were created and later developed throughout France. The

one in Paris. Subsequently resource centers were created and later developed throughout France. The specific way in which individuals with autism function was finally acknowledged and new units delivering behavioral and developmental programs were created. In 1995, Simone Veil, Minister of Social Affairs, Health and the City, adopted a 5 year, 100 million francs (approximately seven million dollars) plan of action for autism. The problem of the exclusion of individuals with autism was brought

plan of action for autism. The problem of the exclusion of individuals with autism was brought before the Council of Europe. In 1996, the Chossy Act was voted, which assigns a disability status to autism and guarantees these individuals the right to access care in a multidisciplinary approach. In 2003, Deputy Chossy reported to the government denouncing the situation of individuals with autism and called for a plan of action to enforce their rights. Despite all these efforts, France remained

and called for a plan of action to enforce their rights. Despite all these efforts, France remained behind. Parents of “Autism France” took up action before the European Court of Justice which condemned France on several occasions for failing to respect the right to education of individuals with autism. This will be followed by recommendations for diagnosis, the 2005 Disability Act, which guarantees equal rights and opportunities, the referral to the National Ethics Advisory Committee in 2007,

equal rights and opportunities, the referral to the National Ethics Advisory Committee in 2007, which highlights the lack of care and the resulting distress in families, recommendations for a scientifically validated intervention, and three autism action plans that allowed new funding to be allocated to developing the first Resource Centers and specific interventions. In 2012, autism was declared Great National Priority, leading to various awareness-raising campaigns and strong media coverage.

Great National Priority, leading to various awareness-raising campaigns and strong media coverage. Recommendations on intervention for adults are currently being developed and an international scientific committee has been set up to determine what the main axes of the fourth autism action plan should be.

**Legal Issues, Mandates for Service** The disabilities Act of 11 February 2005 and Decree No 2005-223 of 11 March 2005 defines the goals of support services in social and medical institutions. This Act aims to improve inclusion of individuals with disabilities. Based on the principle of equality, the act recognizes that a disabled person’s right to compensation is a societal duty and is not dependent on appeal to pity or charity. It aims to restore equal opportunities for all citizens. Among

on appeal to pity or charity. It aims to restore equal opportunities for all citizens. Among other things, this Act resulted in the increase of requirements regarding accessibility to urban areas and access to employment for disabled individuals. A National Solidarity Fund for Autonomy (CNSA) was established to finance this Disabilities Act, but it is not specifically dedicated to autism. After the enactment of the Chossy Law in 1996, various parent association actions led the government to

the enactment of the Chossy Law in 1996, various parent association actions led the government to define a new policy in favor of autism through successive autism action plans. During the first plan of action from 2005 to 2007, Autism resource centers are created. Their main tasks are to inform and guide the affected people and their families. They must organize diagnoses and multidisciplinary assessments of children and adults, develop individual evaluations in order to establish a

assessments of children and adults, develop individual evaluations in order to establish a personalized project for each person, facilitate contact and information within professional circles, and develop local documentation centers. Improvement in parent and professional training is planned. Adapted services are developed but still extremely insufficient. The plan of action also advocates better schooling for children with autism in mainstream classrooms.

The second autism plan of action between 2008 and 2010 provided 4100 openings in services for children and adults with autism. The High Authority for Health (HAS) had the task of creating an international, scientific, and multidisciplinary database which would serve as a reference. Together with the National Agency for the Evaluation and the Quality of Social and Medical Social Establishments and Services (ANESM), they must define guidelines on good practice in the field of autism. The third

Services (ANESM), they must define guidelines on good practice in the field of autism. The third autism plan of action organizes early diagnosis and intervention. It stresses the importance of lifelong support with schooling for children and social and professional inclusion for adults. Better support for families is advocated and the resource centers are responsible for organizing it. The action plan also calls for continued efforts to support research on the origins of autism, the mechanisms

plan also calls for continued efforts to support research on the origins of autism, the mechanisms involved, indicators facilitating early diagnosis, evidence-based treatments, and actions promoting social inclusion. These three Autism Action Plans have helped improve common knowledge on autism and have attempted to change practices. They made it possible to affirm that psychoanalysis was not a treatment for autism and promote scientifically validated treatments. Resources have been allocated

treatment for autism and promote scientifically validated treatments. Resources have been allocated to developing quality services for patients and their families as well as to research. Nevertheless, the situation remains critical as not all the measures planned by the government have been implemented. Many families are still struggling to find suitable services. Despite government recommendations, the services provided in each region vary greatly. While many professionals have turned to

the services provided in each region vary greatly. While many professionals have turned to scientifically validated practices, others remain on old positions and continue to apply methods that families no longer want. The Autism Action Plans generated substantial funds yet they are still insufficient to adequately assist people with autism and their families in France. A fourth Autism Action Plan is being considered. The main aim should be to reinforce the progress of the previous action plans.

is being considered. The main aim should be to reinforce the progress of the previous action plans. The current minister organized a committee of international experts to support her approach. A new government was elected in 2017. It is committed to continuing efforts for people with autism. The 4th autism plan should focus on continuity of care at all ages and develop new facilities for adults with autism. Real progress can only be achieved through ground breaking decisions such as allocating

autism. Real progress can only be achieved through ground breaking decisions such as allocating financial aid based on compliance with recommendations and the application of scientifically validated practices.

**Overview of Current Treatments and Centers** Due to the long history of psychiatric medicalization in France, services for individuals with autism primarily depend on the Ministry of Social affairs and Health. This Ministry delegates the organization of services to a ministry under its supervision: Ministry of disabled people and the fight against exclusion. The ministries of education, labor, cities, youth, and sports are secondarily involved, usually for specific actions or for creating

cities, youth, and sports are secondarily involved, usually for specific actions or for creating partnerships. Therefore, the Ministry of disabled people and the fight against exclusion plays the primary role in organizing services. A national solidarity fund was established to finance care services, but it is not specific to autism. It covers all disabilities as well as assistance to the elderly. Two national agencies, ANESM (National Agency for the Evaluation and the Quality of Social and

Two national agencies, ANESM (National Agency for the Evaluation and the Quality of Social and Medical Social Establishments and Services) and HAS (High authority of Health) are responsible for monitoring the quality of services and have initiated a process of reflection leading to recommendations on good practice in cooperation with parent associations and experts in autism. This has helped the situation in France evolve. There is a better understanding of autism and new services correspond

situation in France evolve. There is a better understanding of autism and new services correspond more accurately to the needs of individuals with autism. Nevertheless, widely disseminating this knowledge is necessary to change the outdated services and develop new options for people with ASD. On a regional level, local health agencies publish calls for projects based on the development policy launched by the Ministry. They open up the competition to project promoters which can either be

launched by the Ministry. They open up the competition to project promoters which can either be associations or hospital services. They receive funds from the CNSA (National Solidarity Fund for Autonomy) and attribute these funds to the selected projects. They then monitor the use of allocated resources. The MDPH (Departmental Office of disabilities) manages orientations. Its teams assess and determine the degree of disability and orient towards available services. The disability rate opens

determine the degree of disability and orient towards available services. The disability rate opens rights to financial compensation allowances (AEEH = disabled child education allowance and AAH = adult disability allowance) for disabled people and a possible compensatory allowance (PCH = Disability Compensation Benefit). The commission that allocates financial aid (Committee on rights and autonomy of persons with disabilities = CDAPH) consists of only professionals but service users are

autonomy of persons with disabilities = CDAPH) consists of only professionals but service users are represented by parent associations. Resource centers inform families and professionals about services.

**Services for Children** For children and adolescents with disabilities, the right to education is associated to an obligation of schooling or appropriate support. It can be implemented within the schools’ “ordinary” classrooms. Enrollment in the mainstream is favored with adaptations (teacher’s aid, teacher, and staff training). Schooling can also be implemented in a collective arrangement School Integration Classes – CLIS – or Localized Units for Inclusive Education – ULIS – in higher

School Integration Classes – CLIS – or Localized Units for Inclusive Education – ULIS – in higher education. Enrollment can be full-time or part-time with the support of a specialized institution if needed. Self-contained classrooms for children from 3 to 6 years of age were recently created in preschool. These classes are opened to a small number of children (maximum seven) who could not be enrolled despite the help of a teachers aid. In these specialized classrooms, a multidisciplinary team

despite the help of a teachers aid. In these specialized classrooms, a multidisciplinary team applies a personalized program for each child. They also benefit from inclusion in regular classrooms (mainstreaming) therefore attending school full-time.

**Different Specialized Structures Can Take Care of Children with Autism** For young children with sensory, motor, or mental deficits up to the age of 6, CAMSP (Early medico-social centers) are involved in the early detection of disability, outpatient treatment, rehabilitation, and family-directed services. They offer consultation, rehabilitation, as well as individual or group activities promoting child development and social integration. With parental consent, concerted actions can becarried

child development and social integration. With parental consent, concerted actions can becarried out in the child’s natural environment (day care centers, school, or recreation center). For children able to attend school, different outpatient services are available: CMP (Medico-psychological centers) are consultation services for people in need of psychological support. There are infant-juvenile CMPs for children and adolescents up to 16 years of age. The care is free and multidisciplinary.

CMPs for children and adolescents up to 16 years of age. The care is free and multidisciplinary. CMPP (medical psychoeducational centers) are in charge of diagnosis and treatment in outpatient care for children aged 3–18 or 20 years, suffering from neuropsychiatric disorders or behavioral disorders. Treatments are individual psychotherapy, psychotherapy, family therapy, speech and language rehabilitation, and psychomotor therapy. The child or adolescent stays in his family, school, and social

and psychomotor therapy. The child or adolescent stays in his family, school, and social environment. A SESSAD (Special Education and Home Care Services) aims to enable children with various disabilities within their natural environment allowing them to continue developing in their family and social environment. The multidisciplinary team’s main goal is the early management of the child, family-directed services, academic support, and self-help skills. Services can be provided in the child or

services, academic support, and self-help skills. Services can be provided in the child or adolescents natural environment. Early intervention SESSAD programs have recently been established. They can accommodate children starting from 18 months who can benefit from programs like the ESDM. Day hospital institutions take care of patients on a full-time or part-time basis during the day. A team composed of psychiatrists, psychologists, speech therapists, occupational therapist, educators, and

composed of psychiatrists, psychologists, speech therapists, occupational therapist, educators, and social workers care for the patient. Usually special education classrooms are implemented in the day hospital but are not a priority over treatment. Some day-hospitals include mainstreaming. The other structures care for children and adolescents with intellectual disabilities on a full-time basis regardless of the degree of their disability. IME (Medical-Educational Institutes) regroup several

regardless of the degree of their disability. IME (Medical-Educational Institutes) regroup several categories of structures: “Medical-Pedagogical Institutes” (IMP) provide full residency, semi-boarding, temporary reception or day schooling for children aged 3–6 to 14 years old. Medical-Professional Institutes (IMPRO) accept children and adolescents ranging from 14 to 20 years old. Here they receive health and educational care through a therapeutic and pedagogical approach supposed to promote

health and educational care through a therapeutic and pedagogical approach supposed to promote the development of the child or adolescent. The acquisition of autonomy skills (transport, management of a budget, etc.) and preprofessional training are also important goals. IMPROs provide vocational training (which may lead to a Diploma) for integration into the protected or ordinary work environment. ITEP (Therapeutic, educational, and pedagogical institutes) are medical-social structures which

ITEP (Therapeutic, educational, and pedagogical institutes) are medical-social structures which take in children and adolescents with intact intellectual and cognitive potential but who present psychological difficulties and behavioral disorders which severely disrupt socialization and access to learning. The different autism action plans favored the creation of experimental structures in which behavioral and developmental models are applied in accordance with the recommendations of the High

behavioral and developmental models are applied in accordance with the recommendations of the High Authority of Health. Parents hope that this type of structure will continue to develop. The structures caring for children with disabilities are therefore numerous and diverse, but they are often inadequate for children with autism. Therapeutic approaches are often unspecific due to the lack of professional training. This situation is changing through the different autism action plans, but many

training. This situation is changing through the different autism action plans, but many parents are still unhappy with what is being offered and availabilities in the structures applying the recommendations of the HAS are still insufficient. As a result, many children are on waiting lists with no options. Parents, who have no other alternative or who do not agree the institutions approach, can call on psychologists and educators who work in private practice. However, this represents a

can call on psychologists and educators who work in private practice. However, this represents a significant cost, sometimes preventing the child to access sufficient treatment, whereas the treatments in institutions are paid for by the state.

**Services for Adults** Services available to adults are either in the health or in the medical-social field. In the psychiatric services of the health sector, people with autism are often mixed with patients having various psychiatric pathologies; therefore, their specific needs are not met. They may also suffer from the violence of other psychiatric patients. Some professionals have become aware of this serious problem and have organized smaller units for people with autism. However,

aware of this serious problem and have organized smaller units for people with autism. However, generally these adults are often left on their own, without specific support causing many behavioral disorders. In the medical-social sector (with or without identified specific services for autism), there are different structures. MAS (Specialized Care Homes) receive disabled adults who have acquired little autonomy and whose condition requires medical supervision and constant care. These

acquired little autonomy and whose condition requires medical supervision and constant care. These specialized care homes or MAS are nursing homes. They can accommodate people with multiple disabilities, usually with a severe mental disability or people who acquired disabilities (brain injury). Some MAS also welcome people with autistic syndromes but do not provide specialized treatment. Generally, MAS provide year-round accommodation, day care services, or temporary accommodation. Those being

MAS provide year-round accommodation, day care services, or temporary accommodation. Those being cared for in a MAS lack autonomy and are unable to care for themselves in daily life responsibilities. Assistance is needed for activities of daily living and for health monitoring. In general, people accommodated in MAS have less autonomy than those in other health and welfare services for disabled adults (foster home or medicalized foster home), but MAS residents

are not within the psychiatric sector. A person admitted to this structure may end his days there. The MAS are financed by health insurance funds, therefore the services of the regional health agencies (ARS).

Adult Foster Homes (FAM) are nursing homes. They welcome people with multiple disabilities, severely disabled adults unfit for any professional activity who need assistance with daily living tasks or medical monitoring. They can also accommodate seniors with disabilities. Generally, FAM residents have more autonomy than those in the specialized care homes (MAS). Medicalized FAMs are funded in part by health insurance, for care and medical staff, in part by the departmental council, for

in part by health insurance, for care and medical staff, in part by the departmental council, for accommodation and entertainment. That is why the FAM were also called “dual pricing home.”

There are other forms of accommodation which depend on a person’s level of autonomy. Living spaces or homes are very small structures providing a personalized support. Legally, these are not social institutions or services. However, they are obligated to implement individual life projects, taking into account the resident’s expectations and needs. Group homes for disabled adults provide accommodation and care for disabled individuals who work in either an ordinary environment, an institution,

and care for disabled individuals who work in either an ordinary environment, an institution, a support service through work (ESAT), or an adapted enterprise during the day. Foster homes offer accommodation, care, and medical assistance for physically or mentally disabled working adults. A SAMSAH (Medical and medical-Social support services for Disabled Adults) tries to maintain people with disabilities in the mainstream, by helping restore social ties (family, school, business, etc.) and

disabilities in the mainstream, by helping restore social ties (family, school, business, etc.) and promoting access to services offered by the community. In addition to these benefits, they provide medical assistance. Temporary Homes for disabled adults have several objectives: first of all, they allow the disabled person to change his or her living environment and if necessary, escape from time to time to avoid the risk of confinement; secondly, they allow “caregivers” to benefit from respite

to time to avoid the risk of confinement; secondly, they allow “caregivers” to benefit from respite time. Temporary stay is organized for a limited period of up to 90 days per year, full or part time, with or without accommodation, including day care. It can be arranged in a sequential mode, that is, to say by programmed periods throughout the year.

For the most autonomous, services are organized to allow access to employment. Support services through work (ESAT), formerly called CAT (Centre for assistance through work), provide services to disabled adults with a working capacity of less than one third of the normal capacity to take up employment in an ordinary environment. Vocational Rehabilitation Centers provide training for disabled adults to facilitate integration or reintegration into either an ordinary or protected working

adults to facilitate integration or reintegration into either an ordinary or protected working environment. A SAVS (Accompanying Service for accessing society) is a structure that assists disabled adults in fulfilling their life project by helping maintain or restore family, social, academic, or professional ties and by facilitating access to community services and events. Experimental Facilities for disabled adults are aiming to promote new types of support, organize a more rational way to

for disabled adults are aiming to promote new types of support, organize a more rational way to access to the care system facilities, a better coordination of this support, as well as training and prevention for behavior disorders and health issues.

There are therefore many structures in France for adults with disabilities. Unfortunately, they are rarely suitable for people with autism. The different autism action plans have partially corrected this situation, but there is still a lot to be done in order to provide all adults with the assistance that suits their specific needs. Too many people are still left with no options in France. These individuals live in their parents’ home. This is an important issue because aging parents,

These individuals live in their parents’ home. This is an important issue because aging parents, struggling to handle the situation, are concerned about the future of their child and what will happen when they are no longer around.

Overview of Research Directions  In France, a majority of the research units belong to large organizations such as the CNRS (National Center for Scientific Research) and INSERM (National Institute for Health and Medical Research or Institut Pasteur). These units are located in university hospitals, universities, or specific institutes. Other laboratories are part of universities. Thomas Bourgeron’s team at Pasteur Institute works on the genetics of autism and sleep disorders related to melatonin

team at Pasteur Institute works on the genetics of autism and sleep disorders related to melatonin production. This team found several genes involved in autism, such as SHANK1, SHANK2, SHANK3, and NRXN1, which also play a role in the transmission of neuronal information. These researchers also proposed a murine model of autism (Jamain et al. 2003; Durand et al. 2007; Delorme et al. 2013; Bourgeron 2015). The Fundamental Foundation supports research in psychiatry, including research in the field

2015). The Fundamental Foundation supports research in psychiatry, including research in the field of high-functioning autism. The teams of the Asperger Experts Centers of Créteil and Robert Debré recently published a study comparing high-level autism and schizophrenia in Multimodal MRI. The results reveal the coexistence of common and opposite susceptibility factors in these two pathologies (Katz et al. 2016). InFoR-Autism is a new project whose objective is to study patients’ clinical and

et al. 2016). InFoR-Autism is a new project whose objective is to study patients’ clinical and cognitive profiles to look for biomarkers (clinical, neuroanatomic, immunological, and biochemical) and to identify genetic factors involved in autism. The establishment of a 2-year cohort follow-up of patients, healthy subjects, and relatives (parents, brothers, or sisters of the patients included in the study) is planned. An INSERM team in Tours pursues research on the evaluation tools and the

in the study) is planned. An INSERM team in Tours pursues research on the evaluation tools and the neurophysiological mechanisms involved in autism. Their main research uses MRI, EEG, and eye tracking. These technologies are used to study the maturation of human face exploration (Aguillon et al. 2016), the differences between ASD and Mental deficiency (Bonnet-Brilhault et al. 2016), and atypical brain mechanisms in ASD (Thillay et al. 2016). Currently, the team is engaged in a new project

brain mechanisms in ASD (Thillay et al. 2016). Currently, the team is engaged in a new project “Emotional Attention and Attention Related to Change in Autism.” Other examples of research carried out by university teams are eye-tracking research (Guillon et al. 2014, 2015, 2016), research on the effect of slowing down movement of what will be perceived (Tardif et al. 2007), and research on screening (Baduel et al. 2016). New research directions include treatment evaluation and cost-effectiveness

(Baduel et al. 2016). New research directions include treatment evaluation and cost-effectiveness studies. It is impossible to cite all the research teams here and these are merely examples, but although France has lagged behind in the implementation of adapted treatments, there are some interesting achievements in the field of research. Public funds for research are, however, rather limited and researchers must solicit private foundations and contributors. Involvement in international programs,

must solicit private foundations and contributors. Involvement in international programs, particularly in Europe (e.g., Salomone et al. 2015), reinforces French research. Recently INSERM created the Autism Research Network that will bring together the efforts of different teams and strengthen their resources. This initiative will hopefully increase knowledge and enhance practices on autism.

Overview of Training  The training of professionals in France is very inadequate. In physicians’ training, only a small part of the curriculum focuses on autism, except for university centers where specialists and researchers work in neurodevelopmental disorders. In psychology departments, curriculums vary greatly from one university to another and some professors still teach old models of autism highlighting psychoanalysis. Fortunately, some researchers teach courses that are up to date and

highlighting psychoanalysis. Fortunately, some researchers teach courses that are up to date and correctly train their students. The same problem exists in the various institutes that train educators, social workers, speech therapists, and occupational therapists. In order to compensate their lack of specific training, continuing education qualifications have been created. After graduation they can receive an up-to-date training. Associations have also created training courses to complement

can receive an up-to-date training. Associations have also created training courses to complement professional training.

Social Policy and Current Controversies  The current government intends to maintain its efforts to develop adapted services in the next autism action plan. Progress is still needed in early diagnosis and intervention as well as in appropriate services for school-aged children, adolescents, and adults, and parents are fighting for this. However, France is still lagging behind and budgets are limited. In addition, some teams still refuse to follow HAS recommendations. Training needs to be

limited. In addition, some teams still refuse to follow HAS recommendations. Training needs to be profoundly modified so that all medical professionals have solid knowledge on autism and are able to diagnose it as early as possible. Other professionals should be able to implement appropriate treatments. It would also be important for the general public to be better informed in order to help encourage the inclusion of people with autism in society.

Fraternal Twins  Fred R. Volkmar Gerrit Ian van Schalkwyk Department of Psychiatry, Yale School of Medicine, Yale Child Study Center, Yale University, New Haven, CT, USA

Butler Hospital, Brown University, Providence, RI, USA  Name and Degrees: Volkmar, Fred R. *   B.S., University of Illinois, with high honors (1972) *   M.A. (psychology), Stanford University (1976) *   M.D., Stanford University School of Medicine (1976) *   M.A. (Hon), Yale University (1999) *   D.Sc. (Hon), University of Illinois (2013)  Major Appointments *   Director, Yale University Child Study Center, New Haven, CT (2006–2014) *   Chief of Child Psychiatry, Yale New Haven Hospital, New

Study Center, New Haven, CT (2006–2014) *   Chief of Child Psychiatry, Yale New Haven Hospital, New Haven, CT (2006–2014)

*   Irving B. Harris Professor of Child Psychiatry, Psychiatry, Pediatrics, and Psychology, Yale University, New Haven, CT
*   Director, Autism Program, Yale University Child Study Center, New Haven, CT (1983–2006)
 Major Honors and Awards *   International society for Autism Research Lifetime Achievement Award, Atlanta, GA, 2014
*   Distinguished Contributor to the Field Award, Autism Services & Resources Connecticut, 2014

*   Distinguished Contributor to the Field Award, Autism Services & Resources Connecticut, 2014
*   Frank J. Menolascino Award for Work in Developmental Disabilities, American Psychiatric Association, Philadelphia, 2013
*   Honorary Doctor of Science, University of Illinois, 2013 *   Lauretta Bender Award, New York State Psychiatric Institute, 2012 *   George Tarjan Award for Research in Developmental Disabilities, American Academy of Child and Adolescent Psychiatry, 2007

*   Emily and Frank M Puzio Award, Eden Institute Foundation and Princeton Lecture Series, 2007
*   Blanche F. Ittleson Award, American Psychiatric Association, 1997  Landmark Clinical, Scientific, and Professional Contributions *   Over $10 million in grants from the NIH, including for the projects “The Social Neuroscience of Autism and Related Disorders” and the “Neurobiology and Genetics of Autism and Related Conditions”

*   Over 200 articles in peer reviewed journals, including the seminal papers “Seizure Disorders in Autism (1990)” and “Field trial for autistic disorder in DMS-IV”
*   Over 150 book chapters and editor of multiple books on autism spectrum disorders

*   Extensive service on local, national, and international committees including the APA Child and Adolescent Disorders Work Group for DSM-IV, the Committee on Disorders of Infancy and Early Childhood for DSM-IV (chair), and the APA Disorders of Infancy Work Group for DSM-5. On advisory board for Autism Genome Project since 2006 and reviewer for multiple organizations including the NIMH, Wellcome Trust, Autism Speaks, and the Medical Research Foundation of the UK

*   Editor of the Journal of Autism and Developmental Disorders, the Encyclopedia of Autism, and the definitive “Child and Adolescent Psychiatry: A Comprehensive Text”

Biography  Fred Robert Volkmar was born in Illinois in 1950 and received an undergraduate degree in psychology from the University of Illinois in 1972. He then attended Stanford University where he graduated with both an M.D. and a master’s degree in psychology. During his time at Stanford, he was engaged in basic science research studying dendritic branching in rats, with the first publication of his career appearing in the journal Science. Dr. Volkmar then completed a psychiatry residency at

his career appearing in the journal Science. Dr. Volkmar then completed a psychiatry residency at Stanford before coming to the Yale Child Study Center for a fellowship in Child and Adolescent Psychiatry. He remained at Yale for the duration of his career, where he founded the Developmental Disabilities Clinic in 1982 and engaged in landmark research which spanned from efforts at understanding the basic neuroscience of ASD to clinical research exploring the implications of changes in the

the basic neuroscience of ASD to clinical research exploring the implications of changes in the definition of autism and related disorders over time. Dr. Volkmar led the DSM-IV field trial to develop the diagnostic criteria for autism and Asperger’s syndrome – this work was critical in bringing the diagnosis of Asperger’s into the public consciousness. Dr. Volkmar cofounded an undergraduate course on autism that was the first of its kind in the world and continues to be offered at Yale every year.

autism that was the first of its kind in the world and continues to be offered at Yale every year. Dr. Volkmar was the director of the Yale Child Study Center for 9 years, following which he returned to clinical work, teaching and research in the department as the Irving B Harris professor of Child Psychiatry, Psychology, and Pediatrics. Dr. Volkmar has an extremely impressive legacy of mentorship, having mentored many now-famous ASD scholars such as Ami Klin, Christopher McDougle, and James

having mentored many now-famous ASD scholars such as Ami Klin, Christopher McDougle, and James McPartland. Dr. Volkmar is married to Lisa Weisner and has two daughters.

Free Appropriate Public Education  Juli Katon Department of Special Education, University of Maryland, College Park, MD, USA  Definition  Free appropriate public education (FAPE) is a term that is used to describe the federal mandate that all school-aged special education students be provided with special education and related services at public expense. The word “free” means that the individual is entitled to daily schooling at no extra cost to the family. The word “appropriate” means that

is entitled to daily schooling at no extra cost to the family. The word “appropriate” means that the student’s education must be individualized to the unique learner’s needs as decided upon during the development of the student’s individualized education program (IEP). The word “public” refers to who will be paying for, supervising, and directing the learner’s education. The word “education” means that children who qualify for special education are entitled to schooling like their same-aged,

that children who qualify for special education are entitled to schooling like their same-aged, typical peers. The services provided under FAPE must meet the standards of the local state education agency in addition to being provided at public expense to school-aged children from preschool to high school in accordance with the IEP. For children with a diagnosis of autism, this means that the majority of their weekdays from the time they are 3 years old will be spent in a public school

the majority of their weekdays from the time they are 3 years old will be spent in a public school classroom. An individualized family service plan or an IEP is created for a student when they enter the school system. The IFSP or IEP team consists of several members whose input is critical to the development of an IFSP/IEP: parents, school personnel, and anyone else that the family feels should be a part of the team. Together, the team will decide on the least restrictive environment and the

be a part of the team. Together, the team will decide on the least restrictive environment and the most appropriate setting for the individual with autism. For individual students, this means different settings. An appropriate education for one student may be to be included with same-aged peers in his or her home school. An appropriate education for another student may be a self-contained classroom for children with autism within a comprehensive school. When the IEP team has come to an

classroom for children with autism within a comprehensive school. When the IEP team has come to an agreement on what is appropriate for a student, the student’s FAPE can begin.

Free Recall  Hillary Hurst Department of Psychology, University of Massachusetts Boston, Boston, MA, USA  Definition  Free recall is a paradigm used in memory testing. It involves the presentation of information, such as a list of words or images, to the examinee, followed by a period of either immediate or delayed recall, during which the examinee is asked to produce as much of the presented information as possible. This recall can be oral or written. The primacy effect and recency effect,

information as possible. This recall can be oral or written. The primacy effect and recency effect, presented in a classic study by Murdock (1962), both affect free recall: “primacy effect” is the ability to recall information presented first more easily, and “recency effect” is the ability to recall information presented last more easily. Free recall of verbal stimuli tends to be an area of relative weakness for individuals with autism spectrum disorders because they may be less able than

relative weakness for individuals with autism spectrum disorders because they may be less able than individuals without ASD to make subjective connections across words that, in turn, assist with their recall (Gaigg et al. 2008). Children with ASD have been found to perform more compared to children without ASD when recall is cued or assisted, not free (Tsatsanis 2005).

Friendship Satisfaction in Children with ASD  Ayodola A. Adigun Yale Child Study Center, New Haven, CT, USA Albert J. Solnit Children’s Center, Middletown, CT, USA  Definition  Friendship satisfaction is the overall quality that individuals perceive their relationships with friends.

Historical Background  Childhood friendship is a close connection between children based on companionship capabilities, reciprocity, and stable social interactions with a peer for greater than 6 months (Freeman and Kasari 1998). The importance of friendships was highlighted since the 1950s. Literature revealed in the 1980s that children’s expectations for friendships were to improve social-emotional statuses. In addition, friendship was shown to function as a protective factor against bullying

statuses. In addition, friendship was shown to function as a protective factor against bullying (Hodges et al. 1999). The positive effects such as enhanced self-worth, protection, and emotional growth warranted the creation of friendship scales to evaluate other possible qualifications and quantifications of relationships. For example, the Friendship Qualities Scale is a devised instrument used to assess the quality of children’s and early adolescents’ friendships according to five domains

to assess the quality of children’s and early adolescents’ friendships according to five domains including companionship, conflict, help/aid, security, and closeness (Bukowski et al. 1994). Perceived conflict in friendships was associated with higher levels of school loneliness and avoidance and lower levels of overall school engagement in boys. For both boys and girls, validation through friendships positively predicted improvements in children’s school attitudes and identification of support.

positively predicted improvements in children’s school attitudes and identification of support. However, perceived exclusivity in friendships was associated with lower levels of school achievement (Ladd et al. 1996). Companionship, intimacy-trust, and affection are distinguishable factors for friends vs. non-friends among older children during preadolescence and adolescence (Buhrmester et al. 1990). Additionally, research indicates children with secure attachments (intact trust and intimacy)

Additionally, research indicates children with secure attachments (intact trust and intimacy) with their caretakers are able to form more positive and responsive friendships compared to children with insecure parent attachments, yielding securely attached children to seek similar qualities with their companionships (Lieberman et al. 1999). Friendship intensity, defined by the frequency that individuals saw their friends, and quality, measured by the satisfaction with friendships were found to be

saw their friends, and quality, measured by the satisfaction with friendships were found to be directly correlated to life satisfaction (Amati et al. 2018). The formation and maintenance of friendship satisfaction is achieved through positive interpersonal and social-cognitive skills, for example, the ability to form intimate bonds and the ability to empathize (Schneider et al. 2001). The friendships of children with autism spectrum disorder (ASD) differ in quality and quantity from typical

of children with autism spectrum disorder (ASD) differ in quality and quantity from typical developing children due to their social-emotional limitations and deficits with their ability to understand and embrace different perspectives (e.g., theory of mind) (Bauminger et al. 2007). The logico-affective hypothesis postulates that individuals with ASD use alternative cognitive strategies to hurdle over socio-emotional difficulties that otherwise come naturally to non-autistic individuals (Bauminger

socio-emotional difficulties that otherwise come naturally to non-autistic individuals (Bauminger et al. 2009).

Current Knowledge  Empirical evidence commonly suggests problems with reciprocal friendships with same-age peers in children with ASD. Parents’ reports have also demonstrated that friendship is uncommon in children with low-functioning ASD compared to those with typical development. Conversely, high-functioning children with autism spectrum disorder (HFASD) in middle childhood and adolescence were often identified to have at least one friend, who usually was less socially impaired (Bauminger et

often identified to have at least one friend, who usually was less socially impaired (Bauminger et al. 2008). Exposure to typical peers appears to have significant effects on friendship behaviors for ASD children. Participants in mixed (ASD and typical developing peers) friendship dyads showed increased responsiveness, stronger receptive language skills, and greater positive social assimilation with closer physical proximity, communication, appropriate smiling, and eye contact and demonstrated

closer physical proximity, communication, appropriate smiling, and eye contact and demonstrated more complex coordinated play than in the non-mixed dyads (Bauminger et al. 2007). Intellectual functioning and language abilities appear to be important potential mechanisms for supporting friendship capacities in ASD. Studies show fewer associations have been found between loneliness and friendship for children with ASD compared to their typically developing counterparts, suggesting less

for children with ASD compared to their typically developing counterparts, suggesting less understanding of the relation between loneliness and friendship. Implications of these results are discussed for conceptualizing the social deficits in autism. Albeit having reports of having at least one friend, children with ASD may suggest poorer quality of their friendships in terms of companionship, security, and help (Bauminger and Kasari 2000; Petrina et al. 2016, 2017). Conversely, other studies

and help (Bauminger and Kasari 2000; Petrina et al. 2016, 2017). Conversely, other studies elucidate that children with HFASD and their friends perceived friendship qualities similarly, suggesting that preadolescents with HFASD have capacities for interpersonal awareness which positively contribute to friendship satisfaction. Current studies which examine the level of friendship satisfaction of children with ASD and their friends with and without diagnosis of ASD show relatively high levels of

with ASD and their friends with and without diagnosis of ASD show relatively high levels of friendship satisfaction among all groups without significant differences (Bauminger et al. 2008).

Research has shown that friendship impacts the overall experience of mainstream school for autistic children. Furthermore, autistic children’s social motivation likely determines both the nature and extent of their friendships. Adults can play an active and integral role in supporting their ASD children’s friendships, but this can be conflictual to the kids’ wants sometimes. These findings not only underscore the need to ascertain the perspectives of young people with autism on their friendships

underscore the need to ascertain the perspectives of young people with autism on their friendships but also for adult caretakers to be more socially and ethically considerate of the timing and quality of intervention (Calder et al. 2012).

Future Directions  Future studies embrace the potential of identifying particular differences in social-emotional functioning and friendship building capacity specifically within the ASD population. These uncoverings can yield more clarity about friendship develop-ment and maintenance by comparing children within the spectrum who form friendships with other children with ASD in comparison to children with ASD who do not have friends. Additionally, exploring the differences of the nature of

children with ASD who do not have friends. Additionally, exploring the differences of the nature of friendship within the same child with ASD while playing with a friend with a disability versus playing with a friend with typical development can provide better understanding of the factors that contribute to a satisfactory friendship for an ASD child. The notion that typically developing peers enhance and somewhat scaffold the social develop-ment of preadolescent children with HFASD embrace the

and somewhat scaffold the social develop-ment of preadolescent children with HFASD embrace the postulation that the HFASD child uses the typical peer as a role model for learning normative social behaviors. More studies are indicated to explore the quality of friendships longitudinally through adolescence and adulthood to assess to what extent the social-emotional skills of ASD are consolidated through later years. In other studies which explore ASD and typical development peer dyads, there was

later years. In other studies which explore ASD and typical development peer dyads, there was less opportunity for the child with autism to take a leadership role in the activities. This dissymmetry of power in the mixed friendship dyads indicates a need for applying intervention in inclusive settings to provide opportunities for leadership building for ASD children and, consequently, expand the possibilities for these children to have more balanced options for relationship building. Another

possibilities for these children to have more balanced options for relationship building. Another implication for intervention is elucidated amid the findings that ASD children in mixed friendships have stronger receptive language abilities, suggesting a relationship between language ability and peer competence (Bauminger et al. 2007). This warrants the need for more approaches that target language skill building, yielding more possibilities for educational and social success and consequently

skill building, yielding more possibilities for educational and social success and consequently friendship building. Parents and teachers of children with ASD play an integral role in supporting and facilitating their friendships. Thus, the direction for better understanding and contribution to friendship develop-ment implores early interventions and teacher and parent training on the development of friendships in preschool children with ASD within school and community settings. Security

of friendships in preschool children with ASD within school and community settings. Security attachment may, in a compensatory fashion, contribute positively to the quality of friendships of children with ASD with their typically developing and fellow ASD peers amid social-cognitive difficulties. Thus, it is mandatory in the future for more resources and training opportunities that support the fostering of responsivity and sensitivity between parents and their children with ASD with the lens of

of responsivity and sensitivity between parents and their children with ASD with the lens of aiding in the develop-ment of clear communicative cues. Parents also can be coached to verbally mediate the social world for their HFASD children during structured play, therefore helping them develop schemas for this form of dyadic interaction which consequently provide better opportunities for friendship development and overall friendship satisfaction (Solomon et al. 2004). Further research is needed

development and overall friendship satisfaction (Solomon et al. 2004). Further research is needed to examine the effectiveness of various interventions for children with ASD that help them form successful friendships with their peers. In the future, program facilitators which support friendship development with ASD and typically developing dyads through interactive activities can be more beneficial by actively serving as exemplars for teaching children with ASD how to explore their peer’s

by actively serving as exemplars for teaching children with ASD how to explore their peer’s different perspectives during these allotted times of engagement. In sum, friendships are indeed obtainable for children with ASD. However, there is more understanding needed about the process of establishing, developing, and consolidating peer relationships with ASD children in order to be able to more effectively provide interventions that can yield increased friendship satisfaction. The

to more effectively provide interventions that can yield increased friendship satisfaction. The socio-emotional encumbrances that are usually experi-enced with these children call for the support of parents, educators, and clinicians to foster opportunities for responsivity, reciprocity, communica-tion, and empathy. Nonetheless, more playtime with typical developing peers can also possibly serve as useful scaffolding for improving social repertoire which can contribute to more satisfactory

as useful scaffolding for improving social repertoire which can contribute to more satisfactory friendship states for children with ASD.

Friendships  Nirit Bauminger-Zviely School of Education, Bar-Illan University, Ramat-Gan, Israel  Definition  Friendship is a type of social relationship appearing throughout the life span, from early childhood to old age. It is conceptualized under the social relationships approach (Hinde 1976), according to which relationships are developed through continuous dyadic interactions over long periods of time with a specific partner (a minimum of 6 months to denote friendship; Howes 1996), to

periods of time with a specific partner (a minimum of 6 months to denote friendship; Howes 1996), to extract a relationship model that goes beyond the influence of each member’s characteristics (Dunn 1993). Through friendship formation, children are “meshed” with each other to create a whole that is greater than the sum of its parts, and they share the properties and histories of their mutual interaction (Dunn 1993). The essence of friendship as a rela-tionship is a mutual liking, whereby

interaction (Dunn 1993). The essence of friendship as a rela-tionship is a mutual liking, whereby children reciprocate an affectionate bond of emotional closeness. Having friends is cardinal to children’s well-being and protects them from depression and loneliness, since friendship provides the child with a sense of belonging and self-worth (e.g., Asher et al. 1996; Vitaro et al. 2009). The reciprocal-dyadic and stable nature of friendship is a challenge of child development and a necessary

and stable nature of friendship is a challenge of child development and a necessary component in the formation of fundamental pro-socio-emotional capabilities (e.g., mutual caring, companionship, empathy, mutual regulation) as well as socio-cognitive capacities (e.g., awareness and responsiveness to another’s emotions, desires, intentions, and thoughts; conflict resolution; complex informa-tion processing processes; Asher et al. 1996). Affective closeness, which is a marker of friend-ship,

processing processes; Asher et al. 1996). Affective closeness, which is a marker of friend-ship, underscores the essence of friendship as an affective bond reflecting the strength of the child’s attachment to the friend. In addition to mutual liking, closeness includes the sense of “specialness” to one another, manifested in verbal and nonverbal expressions of affect and caring (Bukowski et al. 1994; Howes 1996). Intimacy (i.e., making one’s innermost thoughts and feel-ings known to a significant

Howes 1996). Intimacy (i.e., making one’s innermost thoughts and feel-ings known to a significant other) is another important dimension of friendship (Cassidy 2001). Intimacy includes the belief that friends can be relied upon to provide support and help in times of need. Intimacy is also related to the sense of stability and reciprocity in friendship and to the belief that the friendship is strong enough to overcome negative events such quarrels (e.g., Bukowski et al. 1994). Markers of

is strong enough to overcome negative events such quarrels (e.g., Bukowski et al. 1994). Markers of inti-macy include sharing capabilities and pro-social resources such as providing help (e.g., Bukowski et al. 1994). Friendship should also serve the need for enjoyable companionship. Companionship is usually perceived as a child’s ability to spend time with another child and to have fun (e.g., “playing together,” “hanging out,” “doing things together”; Howes 1996). Markers of companionship

“playing together,” “hanging out,” “doing things together”; Howes 1996). Markers of companionship include children’s cooperative skills during shared work or play, as well as their social conversational skills and positive affect (e.g., shared fun) (Asher et al. 1996). In sum, friendship is characterized by stable, frequent, and interconnected affective interac-tions, manifested by certain classes of behavioral markers (e.g., sharing, play, and conversational skills) that facilitate the

classes of behavioral markers (e.g., sharing, play, and conversational skills) that facilitate the functions of companion-ship, intimacy, and closeness. A satisfying friend-ship is an interpersonal achievement that both develops and builds upon a fundamental capacity for affective relationships and social cognition.

Historical Background  In his first description of the syndrome, Kanner (1943) historically conceptualized autism as a disorder of affective contact, “these children have come into the world with an innate inability to form the usual, biologically provided affective contact with people” (p. 250). Kanner’s descrip-tion of Elaine (a 7-year-old girl with ASD) sup-ports this conceptualization: She soon learned the names of all the children (in her school), knew the color of their eyes, the bed in

learned the names of all the children (in her school), knew the color of their eyes, the bed in which each slept, and many other details about them, but never entered into any relationship with them. . ..She has no relation to children, has never talked to them, to be friendly with them, or to play with them. She moves among them like a strange being, as one moves between the pieces of furniture of a room. (Kanner 1943, pp. 240–241). To this day, abnormalities in interpersonal rela-tions are

of a room. (Kanner 1943, pp. 240–241). To this day, abnormalities in interpersonal rela-tions are considered a defining characteristic of ASD (DSM-IV-TR, 2000). Friendship is a direct reflection of the child’s capacity for interpersonal relationships, and for this reason, both the forma-tion and the understanding of friendship in chil-dren with ASD are considered a major theoretical challenge. Contemporary perceptions of the dis-order identify difficulties in friendship formation based on these

perceptions of the dis-order identify difficulties in friendship formation based on these children’s inability to experience relationship-based emotions and on their deficit in intersubjective sharing. The results of such impairments are more impersonal and superficial rather than interpersonal friendship relationships; thus, intimacy and affective closeness, according to this view, are unattainable for ASD children (e.g., Hobson 2005). Another view is provided by theorists that highlight ASD

for ASD children (e.g., Hobson 2005). Another view is provided by theorists that highlight ASD children’s diffi-culty in understanding that other people have dif-ferent thoughts, desires, and feelings than their own (i.e., the theory of mind hypothesis). Theory of mind also predicts crucial difficulties in reci-procity and empathic pro-social behaviors (e.g., comforting, caring, complimenting, listening), which are key defining characteristics of friend-ship (Tager-Flusberg 2001). These two views,

which are key defining characteristics of friend-ship (Tager-Flusberg 2001). These two views, affective and social-cognitive, have led to a gen-eral consensus that friendship constitutes a major area of difficulty for children with ASD. In light of these theoretical assumptions, it is not surprising that friendship in ASD has recently been receiving more attention, but it is still an overlooked area of empirical investigation, despite its significance to the understanding of the social deficit in

of empirical investigation, despite its significance to the understanding of the social deficit in ASD.

Current Knowledge  Friendship Formation  Studies screening for the prevalence of friendship among individuals on the ASD spectrum have presented a fairly pessimistic picture, with signif-icant percentages found to be outside of this meaningful social experience (e.g., Howlin et al. 2004; Koning and Magill-Evans 2001; Orsmond et al. 2004). For example, half of 69 adults with ASD examined were said to have no friends with whom they share activities (Howlin et al. 2004). In another study, Orsmond

to have no friends with whom they share activities (Howlin et al. 2004). In another study, Orsmond et al. (2004) found that of 235 adults and adolescents, 29% had at least one friendship that involved some activities out-side prearranged settings and one-quarter (24%) had peer relationships only in prearranged set-tings. Orsmond et al. also reported a significantly higher number of friends for younger participants (adolescents rather than adults) and for individ-uals with less impaired social

participants (adolescents rather than adults) and for individ-uals with less impaired social interaction skills. Similarly, in Koning and Magill-Evans’ (2001) study, 44% of their adolescent participants with Asperger syndrome had one close friend. Find-ings based on a slightly different paradigm, exam-ining children and adolescents’ social network and social involvement, presented a similar pic-ture, with children on the ASD spectrum more often peripheral in their classroom and forming less

with children on the ASD spectrum more often peripheral in their classroom and forming less reciprocal friendships compared with chil-dren of typical development (e.g., Chamberlain et al. 2007; Kasari et al. 2011; Locke et al. 2010; Rotheram-Fuller et al. 2010). The difference is more dramatic in later elementary school and dur-ing adolescence (e.g., Locke et al. 2010; Rotheram-Fuller et al. 2010). Recently, studies have begun to specifically examine friendship during preschool with regard to

Recently, studies have begun to specifically examine friendship during preschool with regard to ASD (e.g., Bauminger-Zviely and Agam-Ben-Artzi 2014; Bauminger-Zviely et al. 2014; Chang et al. 2016; Freeman et al. 2015). Information about the number of identified friends for ASD children is provided only by Chang et al. (2016). The number of friends reported by parents (42%, n ¼ 13) and teachers (54%, n ¼ 17) exceeded the number of children who were identified as having friends according to

(54%, n ¼ 17) exceeded the number of children who were identified as having friends according to observational data (20%, n ¼ 7), following an adaptation of Howes’ (1983) criteria (e.g., at least 50% of social initiation attempts with responses, at least one unit of joint engagement or games, and one positive affective exchange during the interaction). Nine (29%) sets of parents and teachers identified the same friends; however, parents reported friends from other settings in addition to school,

the same friends; however, parents reported friends from other settings in addition to school, such as family friends (n ¼ 13), outside activities (n ¼ 6), and the neighborhood (n ¼ 6). Further examina-tion of the number of friends for ASD children in preschool is still needed to clarify the gap between parents/teachers and observational reports. Also Bauminger-Zviely and Agam-Ben-Artzi (2014) identified 30 high-functioning preschoolers with ASD who enjoyed at least one reciprocal friendship,

identified 30 high-functioning preschoolers with ASD who enjoyed at least one reciprocal friendship, based on mother’s and teacher’s reports and verified by an observation in the child’s preschool. Other studies focusing specifically on friend-ship in HFASD (high-functioning ASD) have demonstrated the presence of at least one recipro-cal friendship in these children (e.g., Bauminger and Kasari 2000; Bauminger and Shulman 2003; Bauminger et al. 2008b; Daniel and Billingsley 2010). Based on these

Bauminger and Shulman 2003; Bauminger et al. 2008b; Daniel and Billingsley 2010). Based on these different findings, we may conclude that friendship, though not frequent, is an attainable experience at least for certain sub-groups of ASD children, probably for those with higher cognitive and language skills. The two periods with somewhat higher percentages of friendship are middle childhood and early adoles-cence, with adults showing less frequent experi-ences of friendship (e.g., Mazurek 2014)

adoles-cence, with adults showing less frequent experi-ences of friendship (e.g., Mazurek 2014) and with as-yet unclear numbers regarding young children with ASD. Very few studies evaluated the characteristics of children who make friends. Chang et al. (2016) have examined spontaneous peer interactions and play compared preschoolers with friends to pre-schoolers who do not have friends. Children with friends were more likely than children without friends to be jointly engaged with their peers

with friends were more likely than children without friends to be jointly engaged with their peers during free play and used higher joint attention skills. In line with these findings, Freeman et al. (2015) examined the influence of joint attention and play on the quality of friendship among 40 children as measured 5 years later via parent and child reports. The authors found that children who had better joint attention skills at the age of three reported having more closeness and less conflict in

joint attention skills at the age of three reported having more closeness and less conflict in their friendships at the age of eight. Children who had better play abilities in general, and specifically greater variability and flexibility in symbolic play, conveyed higher levels of help-fulness in their friendships. These are important results that link core deficits to later friendship development in ASD.

Friendship characteristics. Variables of friend-ship such as the friend’s attributes (age, gender, type of disability), the duration of the friendship, and the frequency of play dates have rarely been explored in children with ASD. Based on the few findings presented in the literature (e.g., Bauminger-Zviely and Agam-Ben-Artzi 2014; Bauminger and Shulman 2003; Bauminger et al. 2008b; Howlin et al. 2004; Kasari et al. 2011; Orsmond et al. 2004; Locke et al. 2010; Petrina et al. 2015), we may

al. 2004; Kasari et al. 2011; Orsmond et al. 2004; Locke et al. 2010; Petrina et al. 2015), we may conclude with caution that both mixed and nonmixed friendships (i.e., friendship with a child of typical development and friendship with a child with a disability, most likely ASD, respectively) have been found in children with ASD, although the percentages of children who form each type of friendship are not yet clear. Petrina et al. (2015) assessed school-age friendships with regard to

friendship are not yet clear. Petrina et al. (2015) assessed school-age friendships with regard to reciprocity and mutual-ity included 37 boys and 8 girls between the ages of 6.4 and 10.4 years (mean, 8.5; SD, 0.9). Forty-nine percent (n ¼ 22) of the ASD group were in a nonmixed friendship dyad, and 51% (n ¼ 23) were in a mixed friendship dyad. The level of friendship quality was assessed by the Friendship Quality Questionnaire (FQQ; Parker and Asher 1993), and both friends from each dyad

the Friendship Quality Questionnaire (FQQ; Parker and Asher 1993), and both friends from each dyad answered the questionnaire using a three-point response scale. According to the answers, the friendships were classified as a best, regular, or nonfriendship. The results showed that 89% of the friendships (i.e., 42 out of 47) across both mixed and non-mixed dyads were reciprocated. The reciprocation rate was 19% for best friends, 15% in the mixed dyads and 24% in the nonmixed, and 55% for regular

rate was 19% for best friends, 15% in the mixed dyads and 24% in the nonmixed, and 55% for regular friendship, 54% in the mixed dyad and 62% in the nonmixed dyad. The majority of friendships consist of same-age and same-gender couples. Surprisingly, the duration of the friend-ship was found to be relatively long, ranging from about 1–4 years, but the frequency of play dates outside the school was reported to be about once a week, which is lower than for typically develop-ing children. As

was reported to be about once a week, which is lower than for typically develop-ing children. As mentioned, these somewhat opti-mistic findings should be further examined, especially with regard to the quality of the rela-tionship. In a meta-analytic study that examined the friendships of school-aged boys with ASD Mendelson et al. (2016) found that boys with ASD do form reciprocal friendships in which they engage in affective sharing, although it is of lower quality. In typical development,

in which they engage in affective sharing, although it is of lower quality. In typical development, friendship functions as an important source of emotional support and as a marker for social adjustment, but the consequences of friendship for children’s psychosocial development are highly dependent on its quality (e.g., Vitaro et al. 2009).

Friendship quality and associated behaviors. The quality of the friendship relationship is probably the most debated topic in ASD. Even if researchers agree that some children with ASD do have friends, they will still question the quality of this relationship. More specifically, dif-ficulties in experiencing intimacy and closeness are expected in these children. One source of information on the quality of friendship is children and adolescents’ self-reports. Several studies have used Bukowski et

of friendship is children and adolescents’ self-reports. Several studies have used Bukowski et al.’s (1994) Friendship Qualities Scale (FQS), which assesses children’s reports about their relationship with a close friend in the following dimensions: compan-ionship, intimacy-security, closeness, help, and conflict (e.g., Bauminger and Kasari 2000; Bauminger et al. 2004; Bauminger et al. 2008b; Chamberlain et al. 2007; Kasari et al. 2011; Locke et al. 2010). In these studies, the friendship

Chamberlain et al. 2007; Kasari et al. 2011; Locke et al. 2010). In these studies, the friendship quality in ASD children was found to be poorer compared with friendship in children of typical develop-ment, especially for intimacy, help, and compan-ionship (e.g., Bauminger and Kasari 2000; Bauminger et al. 2004, 2008b; Chamberlain et al. 2007). Differences on the dimension of closeness between the two groups were reported by Bauminger et al. (2008b) (preadolescence, age range 8.6–12.6) and

the two groups were reported by Bauminger et al. (2008b) (preadolescence, age range 8.6–12.6) and Kasari et al. (2011) (middle childhood, age range 6–11). Interestingly, the FQS did not show friendships of children with ASD to be more conflictual than those of typically developing children. In another study, this time examining adults, Baron-Cohen and Wheelwright (2003) provided support for lower friendship quality, revealing less close, empathic, and supportive friendships, in adults with ASD

friendship quality, revealing less close, empathic, and supportive friendships, in adults with ASD compared with typical controls. Jobe and Williams-White (2007) obtained similar results for adults with severer autism symptoms. Altogether, self-reported friendship quality of HFASD children and adults portrayed difficulties in the formation of quality friendship with peers. This finding has clinical significance: it is inter-esting that individual with such limited interper-sonal awareness and

significance: it is inter-esting that individual with such limited interper-sonal awareness and knowledge (e.g., Carrington et al. 2003; Hobson 2005) can reveal a realistic picture of the quality of their friendship, implying that they are aware of their difficulties in interper-sonal engagement. In Daniel and Billingsley’s (2010) study, 10- to14-year-old boys described the establishment of friendship as the most diffi-cult aspect in their social life. Higher ratings of loneliness were found in

as the most diffi-cult aspect in their social life. Higher ratings of loneliness were found in children with HFASD compared with typically developing children (e.g., Bauminger and Kasari 2000; Locke et al. 2010), a finding which may also support the find-ing of children’s awareness of their social difficul-ties in forming relationships. Such awareness has significant clinical implications, especially in light of accumulating evidence showing high rates of affective disorders (65%; Attwood 2004) such

light of accumulating evidence showing high rates of affective disorders (65%; Attwood 2004) such as anxiety, depression, and social isolation, in high-functioning ASD adolescents and adults com-pared with typical controls (e.g., Attwood 2004). Lack of friends may be one of the reasons for the increase in affective disorders during adolescence and adulthood.

Further support for the notion of lower friend-ship quality in children with ASD has been pro-vided by observations on children’s social interactions with a friend (e.g., Bauminger et al. 2008b) and comparisons between interactions with friends and nonfriends (Bauminger-Zviely and Agam-Ben-Artzi 2014). In Bauminger et al.’s study, HFASD and typical children’s social interactions and their dyadic qualities were coded during an encounter with a friend in two different, noncompetitive play

dyadic qualities were coded during an encounter with a friend in two different, noncompetitive play activities: building with blocks and drawing. Results dem-onstrated significant differences between the two groups in cooperative skills and positive affect on both the building and the drawing activities; dif-ferences in sharing were found only in building, and differences in nonverbal behavior were found only while drawing. The play scale, coded only for the building activity, showed a lower

were found only while drawing. The play scale, coded only for the building activity, showed a lower fre-quency of coordinated play and higher frequency of parallel play in the HFASD group than in the typical group. Pairs in which at least one child had HFASD also differed in conversational flow and social conversation. The HFASD group revealed a more rigid conversational style and engaged in less social conversation compared with the typical children. Group differences emerged in all dimen-sions

conversation compared with the typical children. Group differences emerged in all dimen-sions of the dyadic relationship Q-set that evaluate dyadic quality of interaction between friends (Park and Waters 1989) (positive social orienta-tion, cohesiveness, harmony, responsiveness, coordinated play, and control), except control, with HFASD pairs demonstrating poorer dyadic quality of friendship than typical pairs. A global evaluation of affective closeness and shared fun found that friendships

typical pairs. A global evaluation of affective closeness and shared fun found that friendships between children with HFASD were lower on these two dimensions compared with typical friendships. It is important to note that children with higher receptive lan-guage abilities enjoyed better friendship quality. Thus, it is safe to conclude that the quality of friendships among children with HFASD is poorer than among typical children. The picture is not complete, however, until a comparison is made

than among typical children. The picture is not complete, however, until a comparison is made between HFASD children’s interactions with friends and with nonfriends, for only such a comparison can demonstrate the differential role of a friend to the enhancement of these children’s social capabilities. In a recent study (Bauminger-Zviely and Agam-Ben-Artzi 2014), the author and colleagues explored friendship in preschoolers with HFASD. Each child was videotaped interacting with a friend and with

friendship in preschoolers with HFASD. Each child was videotaped interacting with a friend and with a nonfriend while building with blocks, drawing, and during snack time. Results indicated that HFASD children showed more positive affect and higher degrees of closeness, shared fun, and reciprocity when interacting with a friend compared with a nonfriend. Furthermore, pragmatic skills such as reciprocal conversation, responsiveness to the interlocutor, co-regulation of the conversation,

as reciprocal conversation, responsiveness to the interlocutor, co-regulation of the conversation, appropriate reference to the other’s emotions, appropriate use of facial expressions and eye contact were more intact during interactions with friends versus nonfriends (Bauminger-Zviely et al. 2014), as well as greater conversa-tional adequacy, more initiations of conversa-tional exchanges, and more responsiveness to information evoked by the partner during interac-tion with friends versus

more responsiveness to information evoked by the partner during interac-tion with friends versus nonfriends dyads (Bauminger-Zviely and Agam-Ben-Artzi 2014). Bauminger-Zviely et al. (2017) showed better use of speech acts-SA (SAs; the primary illocu-tionary values conventionally conveyed by utter-ances as acts), during interaction with a friend versus a non-friend. Thus, friendship may serve an important function in the enhancement of social-communicative skills in HFASD.

To complete the discussion on friendship quality, it is important to discuss the partner’s contribution to the friendship, namely, whether differences can be found between mixed and non-mixed friendships. In Bauminger et al. (2008a), the author and colleagues examined differences between mixed (HFASD and typical child), nonmixed (HFASD and child with disability, mainly with HFASD), and typical friendships (both children typical). Findings showed that mixed dyads were similar to typical

friendships (both children typical). Findings showed that mixed dyads were similar to typical friendship dyads in many of the observational measures collected. More specifically, mixed typical and HFASD dyads differed significantly from non-mixed dyads but not from typical dyads in the amount of engagement in goal-directed activity, sharing, positive affect, and parallel play. Mixed dyads were found to be more responsive and cohesive and to be higher in positive social orienta-tion and to show

to be more responsive and cohesive and to be higher in positive social orienta-tion and to show more complex levels of play (coordinated play), compared with nonmixed dyads. This finding points to the possible benefits to the HFASD child of having a typical child as a friend. Further, according to this study, HFASD children in mixed friendships differed from HFASD children in nonmixed friendships only in receptive language, demonstrating higher language skills. Other differences were not

only in receptive language, demonstrating higher language skills. Other differences were not significant: HFASD children in both friendship types (mixed and nonmixed) showed high social-emotional characteristics including theory of mind (ToM), affective recognition, and attach-ment to parents. On the other hand, an important advantage of nonmixed friendship (i.e., friendship between two disabled children) was the element of equality in the exchange: children in such dyads maintained a balance in

was the element of equality in the exchange: children in such dyads maintained a balance in the degree to which each partner assumed dominant or subordinate roles such as leader and follower, whereas children in mixed friendships had fewer leadership opportunities. Thus, it appears that interactions with a similarly disabled friend (most likely another child with HFASD) are also very important. Based on the studies described, a complete understanding of friendship quality in HFASD requires

Based on the studies described, a complete understanding of friendship quality in HFASD requires consider-ation of the characteristics of the friend, with seeming benefits from participation in both mixed and nonmixed friendships. Further studies should investigate the different benefits of partic-ipation in each of the friendship types for the child with HFASD.

Understanding of Friendship  Although interpersonal awareness and under-standing are considered to be severely deficient in ASD (Hobson 2005), few studies have focused on ASD children’s ability to understand the con-cept of friendship. One example is Carrington et al. (2003) study, which examined descriptions obtained through semi-structured interviews with five adolescents with Asperger syndrome aged 14–18, of what a friend is, as well as what a friend is not. The adolescents demonstrated

aged 14–18, of what a friend is, as well as what a friend is not. The adolescents demonstrated difficulties explaining what a friend is: explanations were usually superficial and focused on sharing activi-ties (e.g., computer games such as Dungeons and Dragons) and other areas of interest, without mentioning more emotional aspects of friendship, such as liking each other. Bauminger et al. (2004) provided additional support for these children’s major difficulties in capturing the more affective

provided additional support for these children’s major difficulties in capturing the more affective dimensions of friendship. In their study, children (8–17 years) were shown a picture depicting two children in an intimate exchange, looking at each other, smiling, and appearing to be telling each other a secret. Participants were asked to suggest a title and make up a story to go with the picture and to say whether the children in the picture were friends. Only 50% of the HFASD compared to 81.3%

to say whether the children in the picture were friends. Only 50% of the HFASD compared to 81.3% of the typical control group named the pic-ture in a way that referred to friendship. Among those who did, only one child with autism referred to the intersubjective sharing and closeness aspect of the friendship (the child suggested the title “soul mates”), compared with many of the typical chil-dren (e.g., “best friends,” “secret friends,” “broth-erhood”). In Bauminger and Kasari (2000), HFASD

(e.g., “best friends,” “secret friends,” “broth-erhood”). In Bauminger and Kasari (2000), HFASD children showed difficulty in all three defining aspects of friendship, namely, closeness, companionship, and intimacy. In sum, it is clear that the pragmatic understanding of friendship is lacking in these children, as well as the use of language to describe it. However, it is important to emphasize that lack of understanding may not necessarily preclude the experience of friendship. These children

lack of understanding may not necessarily preclude the experience of friendship. These children may have specific difficulties in reflecting about their interpersonal experience.

Future Directions  There is little doubt that ASD is a disorder involv-ing severe deficits both in experiencing and under-standing friendship. However, friendship is not an all-or-nothing concept, and for these children, some of whom do have friends and whose friend-ships are of great importance to them, even more limited forms of friendship can be fairly durable. Although consistent difficulties have been dem-onstrated across studies examining the under-standing and experience of friendship in

have been dem-onstrated across studies examining the under-standing and experience of friendship in ASD, a subgroup of ASD children has nevertheless emerged, who show higher interpersonal aware-ness and a better quality of friendship. The phe-nomenon of friendship in children with ASD would probably best be described as a continuum of interpersonal resources, with some children able to develop relationships or even meaningful and enduring friendships, others capable of more superficial

relationships or even meaningful and enduring friendships, others capable of more superficial attachments in which the friend is merely a playmate rather than an intimate “soul mate,” and still others being unable to develop any type of stable relationship with a friend or even having not yet developed the desire to have a peer as a friend. This continuum should be further explored in order to identify what characterizes each of these subgroups, and such exploration is indeed under way in the

what characterizes each of these subgroups, and such exploration is indeed under way in the field of typical friendship research, which is beginning to examine various types and functions of friendships (see, e.g., Kerns 2000, for preschool friendship, and Shulman 1993, for adolescents). Just as the child with ASD clearly plays a signif-icant role in determining the quality of the friend-ship, so does the friend, with typically developing friends probably helping to promote more complex

so does the friend, with typically developing friends probably helping to promote more complex interactions, and friends with a disability contribut-ing more to aspects of equality in the friendship. Language skills have also been found important, with children of higher language skill appearing to develop higher quality friendships. In this respect, it is important to note that children with ASD in both mixed and nonmixed friendships reveal high social-emotional abilities such as ToM, security

in both mixed and nonmixed friendships reveal high social-emotional abilities such as ToM, security of attach-ment, and affective recognition. Perhaps, within the spectrum of ASD, these children with higher social, cognitive, and emotional resources do develop friendship. What helps children develop a friend-ship with a typical peer, beyond better language skills, has yet to be explored. Another reason why friendship is an uncommon experience in ASD may be because social interven-tions tend to

reason why friendship is an uncommon experience in ASD may be because social interven-tions tend to neglect focusing on friendship. Theo-retical assumptions of friendship as a nontangible experience for children within the spectrum may limit professionals’ attempts to discover ways to support, encourage, and build up ASD children’s ability to form friendships when planning social interventions. Only rarely is friendship a target of such interventions for this population, and very few social

Only rarely is friendship a target of such interventions for this population, and very few social intervention programs (specifically at youn-ger ages) are aimed at developing and maintaining friendships (e.g., Frankel and Myat 2003). In ado-lescence, for example, children with ASD consis-tently perceive themselves as lonelier than typically developing children (e.g., Bauminger and Kasari 2000). For these reasons, friendship should be consideredan aim of ASD social interventionacross the

For these reasons, friendship should be consideredan aim of ASD social interventionacross the lifespan, and future studies need to further explore the necessary skills leading to the formation of friendship in ASD. Friendship in young children particularly merits thorough investigation due to its preventive value. Another important direction for research is the identification of early markers of higher interpersonal resources and capacities for richer friendships in children within the ASD

of higher interpersonal resources and capacities for richer friendships in children within the ASD spec-trum. Also, since friendship has not been carefully explored in children with lower cognitive and lan-guage skills and little is known about these chil-dren’s ability to form friendship, further research is warranted. Companionship skills seem to be easier to teach, but the real struggle is helping these chil-dren share their innermostfeelings and thoughts and develop intimacy and affective

these chil-dren share their innermostfeelings and thoughts and develop intimacy and affective closeness with a friend. To conclude, we are presently at the most initial stages of untangling the intricacies of inter-personal engagement with friends in ASD. Longi-tudinal studies exploring the phenomenon are needed, alongside the planning of interventional goals to enhance friendship in children with ASD.

Frontal Lobe Findings in Autism  Nouchine Hadjikhani Martinos Center for Biomedical Imaging, Harvard Medical School, Boston, MA, USA Gillberg Neuropsychiatry Center, Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden
 Synonyms  Emotion and decision-making; Executive func-tions; Frontal lobe functions; Mirror mechanisms; Social cognition

Structure  Frontal Lobes: Anatomy and Function  The frontal lobes constitute the largest part of the human brain. Anatomically, they represent those areas of the cortex anterior to the central sulcus. They are the last to mature during development, and only reach full maturity by the mid-20s.
 Function  The frontal cortex can roughly be divided into the following parts with corresponding functions:

*   Frontal operculum: language, mirror mechanisms *   Precentral: motor *   Dorsolateral prefrontal: executive functions *   Orbitofrontal/ventromedial: emotion, decision-making, response inhibition *   Anterior cingulate: choice selection, reward, social emotion, empathy, response monitoring

*   Medial prefrontal: social cognition Lesions of the frontal lobes are characterized by profound personality changes, described in the famous case of Phineas Gage (Damasio 1994). Other elements of frontal dysfunction may include perseveration, aphasia, lack of spontaneous activ-ity, indifference, or disinhibition. Some of the effects resulting from frontal lesions are due to the fact that the orbitofrontal cortex is extensively connected to the amygdala and subcortical struc-tures and can be

cortex is extensively connected to the amygdala and subcortical struc-tures and can be considered as one of the elements of the limbic system. In order to tap into their different functions, including language production, motor, and exec-utive functions, neuropsychological testing of frontal lobes is performed with a variety of tasks. A vast number of tests are available to test lan-guage production, including the Boston Naming Test. Neurological examinations are used to test for motor

production, including the Boston Naming Test. Neurological examinations are used to test for motor functions. Executive functions (EF) include skills required for action planning and execution, inhibition, organization, self-monitoring, cognitive flexibility, and set-shifting. EF tests include Go/No-Go task, Trail Making Test (TMT), Lexical Fluency, attention and con-centration tests (e.g., serial 7), digit span, alterna-tive sequence task, Tower of Hanoi (or of London), and Wisconsin Card

7), digit span, alterna-tive sequence task, Tower of Hanoi (or of London), and Wisconsin Card Sorting Test (WCST). In addition, a computerized battery for testing EF is available: the Cambridge Neuropsy-chological Test Automated Battery (CANTAB) (Robbins et al. 1994). Below, we describe the findings of neuropsy-chological, anatomical, and functional studies in ASD.

Pathophysiology  Neuropsychological Studies  Abnormalities in executive functions are very common in autism, although their relationship with autistic symptomatology is complex (Joseph and Tager-Flusberg 2004; Kenworthy et al. 2008). In their review, Kenworthy et al. (2008) note that while there is a consensus about difficulties in various aspects of executive functions in daily life of individuals with autism, a number of questions remain in terms of their performance during neuropsychological

with autism, a number of questions remain in terms of their performance during neuropsychological testing. In particular, this review underlines the fact that while abnormal performance has been observed in tasks that required human administration and hence adherence to socially presented rules and interac-tions (such as the WCST or the Tower tasks), less impairments are reported in ASD when tests are administered using CANTAB, a computerized bat-tery. A more recent review (Demetriou et al.

are administered using CANTAB, a computerized bat-tery. A more recent review (Demetriou et al. 2019) suggests that the heterogeneity of EF difficulties needs to be quantified and that a RDoC approach may be needed to better understand potential ASD subtypes based on EF functions. Other confounding factors in EF studies in ASD are IQ levels and age, with differential mat-uration trajectories of components of EF during adolescence. A robust finding, however, is the presence of spatial working-memory

of EF during adolescence. A robust finding, however, is the presence of spatial working-memory deficits. Ecologically valid EF control questionnaires (e.g., BRIEF) reveal that both children and adults with ASD have difficulties on unstructured tasks, but the potential confound with social demands on these measures still need to be better understood.

Mirror mechanisms: Mirror mechanisms were first described in primates and rapidly thereafter in humans by the group of Giacomo Rizzolatti (Gallese et al. 1996; Rizzolatti et al. 1996). The caudal part of the inferior frontal gyrus (corresponding to Broca’s area on the left hemi-sphere) is part of the action mirror network. Mir-ror mechanisms translate sensory information during observation of an action done by others into that same action coded in the observer’s motor system. The result of this

done by others into that same action coded in the observer’s motor system. The result of this sensory-motor transformation depends on the location of the mirror neurons: for neurons in the motor system, mirror mechanisms will make possible the under-standing of action and imitation; for neurons located in the insula and the cingulate, mirror mechanisms will support emotional understand-ing and empathy. Language is very likely to have evolved from mirror mechanisms (Rizzolatti and Arbib 1998).

Language is very likely to have evolved from mirror mechanisms (Rizzolatti and Arbib 1998). The results of studies addressing imitation def-icits in autism are sometimes contradictory (for review, see Sevlever and Gillis (2010)), probably partly due to the fact that the term “imitation” covers several categories of behaviors, including emulation, mimicry, and true imitation, and that imitation tasks used in different studies are extremely variable. Imitation performance in ASD depends on task

used in different studies are extremely variable. Imitation performance in ASD depends on task type (Rogers et al. 2003). Children with autism seem to be capable of elicited imitation, but do not show a tendency to spontaneously imitate (Ingersoll 2008; Whiten and Brown 1999; but see Bird et al. 2007). One common finding in ASD is the lack of automatic mimicry and spon-taneous imitation of facial expressions (reviewed in Sevlever and Gillis (2010)). The EP-M model (emulation and

of facial expressions (reviewed in Sevlever and Gillis (2010)). The EP-M model (emulation and planning-mimicry; Hamilton 2008) suggests that while the EP route is intact, the M route, responsible for automatic mimicry and spontaneous imitation, may be impaired in children with ASD. Training of motor imitation can reduce other symptoms (e.g., improve language) in ASD (Ingersoll and Lalonde 2010), and neurofeedback training during imitation and observation seem to result in behavioral improvement

neurofeedback training during imitation and observation seem to result in behavioral improvement in ASD (Datko et al. 2018).

Joint attention (JA), theory-of-mind (ToM): Deficits in joint attention are one of the first symp-toms to appear autism (for review, see Mundy (2003)). Capacity for joint attention normally emerges at 6 months of age and is a prerequisite for social learning. ToM is the capacity to attribute mental states to oneself and others, and deficits in ToM have been a prevalent theory in autism (Baron-Cohen et al. 1985). However, a fair amount of empirical evidence seems to fail supporting the claim of an

et al. 1985). However, a fair amount of empirical evidence seems to fail supporting the claim of an impairment of ToM in autism, as recently reviewed in Gernsbacher and Yergeau (2019), who show that tasks used in the past to evaluate ToM failed to account for autistic traits, social interaction, and empathy. In particu-lar, it appears that many tasks rely on language comprehension (e.g., False Belief task, Strange Stories task, Reading-the-Mind-in-the-Eye task); therefore, it is not a surprise

task, Strange Stories task, Reading-the-Mind-in-the-Eye task); therefore, it is not a surprise that autistic individ-uals with communication impairments would per-form less well in these tasks.

Anatomical Studies  Brain Volume and Cortical Thickness  Anatomical differences in ASD brain are reviewed in Amaral, Schumann, and Nordahl (Amaral et al. 2008). A common theory posits that ASD brains undergo a period of precocious growth during early postnatal life, followed by a deceleration (for review, see Courchesne et al. (2004)) related to a disproportionate increase in white matter (Herbert et al. 2003). Greatest increases in volume have been observed in the dorsolateral prefrontal and

et al. 2003). Greatest increases in volume have been observed in the dorsolateral prefrontal and medial frontal cortices (Carper et al. 2002; Herbert et al. 2004), whereas no differences have been reported in the orbitofrontal cortex. A longitudinal study reports that by age 2.5, both cerebral gray and white matter are significantly enlarged in toddlers with ASD, with the most severe enlargement occurring in frontal, temporal, and cingulate cortices (Schumann et al. 2010). Abnormalities in

occurring in frontal, temporal, and cingulate cortices (Schumann et al. 2010). Abnormalities in gyrification of the inferior frontal gyrus, as well as cortical thickness decreases in the inferior fron-tal cortex, have been described (Ecker et al. 2010; Hadjikhani et al. 2006). In the dorsolateral prefrontal cortex, Casanova et al. have observed abnormal minicolumns (Casanova et al. 2002). A more recent microstructural study has revealed focal patches of abnormal laminar cytoarch-itecture and

recent microstructural study has revealed focal patches of abnormal laminar cytoarch-itecture and cortical disorganization in the pre-frontal cortex of children with autism (Stoner et al. 2014).

Diffusion Tensor Imaging (DTI) Studies  Multiple studies have described white matter alteration in the frontal lobes in ASD. Most DTI studies report reduced fractional anisotropy (FA) in frontal white matter in adolescents and adults with ASD (Alexander et al. 2007; Barnea-Goraly et al. 2004; Keller et al. 2007; Thakkar et al. 2008) as well as in children (Kumar et al. 2010; Sundaram et al. 2008). Opposite findings (increased FA in the frontal lobe) are reported in children, suggesting the role

Opposite findings (increased FA in the frontal lobe) are reported in children, suggesting the role of a developmental component, with an early and accelerated abnormal maturation of the white mat-ter (Ben Bashat et al. 2007). Increased myelination of the frontal lobe was also described in a study using T2-weighted imaging in young children with ASD (Carmody and Lewis 2010). Because ASD most probably is the conse-quence of several possible pre-, peri- and postna-tal pathogenic events that affect

is the conse-quence of several possible pre-, peri- and postna-tal pathogenic events that affect neural proliferation and migration (see above) as well as myelination, pruning, axonal development, and connectivity, it is to be expected that differ-ences will be present in the white matter. A recent review nicely illustrates all the findings related to structural neuroimaging in ASD (Girault and Piven 2020).

Functional Imaging  Activation Studies  Activation studies have addressed different func-tions of the frontal lobes. Semantic processing is associated with stronger activation in Broca’s area in adoles-cents with ASD, who also exhibit less laterality for this area (in the context of similar behavioral performance) (Knaus et al. 2008). In adults, other studies have shown reduced activation in Broca’s area during semantic processing; however, behav-ioral performance was not equal between groups,

area during semantic processing; however, behav-ioral performance was not equal between groups, making the interpretation of the data difficult. A recent meta-analysis of 22 published studies (Herringshaw et al. 2016) reported increased left middle frontal and right inferior frontal gyrus activity in ASD during language processing, in particular in tasks with poorer performance accu-racy for the right IFG. Very few functional studies have examined the imaging correlates of motor dysfunctions in

IFG. Very few functional studies have examined the imaging correlates of motor dysfunctions in autism. Mostofsky et al. (2009) describe greater activation of the supplementary motor area (SMA) during finger tapping task in children with autism, compared to controls who tend to engage the cerebellum for this type of task. In addition, a recent study has demonstrated atyp-ical lateralization in circuits subserving motor functions (Floris et al. 2016). Four main caveats need to be underlined in

subserving motor functions (Floris et al. 2016). Four main caveats need to be underlined in functional imaging of EF in ASD. The first critical issue is the necessity to compare brain activation in tasks where behavioral perfor-mance is similar between the groups being com-pared. A second issue is that the fact that age may play a role in the synchronization of frontal and fronto-striatal brain regions involved in response inhibition and that in consequence age groups need to be strictly defined

involved in response inhibition and that in consequence age groups need to be strictly defined and homogeneous. A fourth issue is the very common comorbidity of ADHD and ASD, which would be de facto associated with EF difficulties. Finally, one has to bear in mind that an abnormal developmental trajectory may also be the basis of the differences observed in children and adolescents with ASD. The majority of functional magnetic resonance imaging (fMRI) studies of EF in ASD have dem-onstrated

majority of functional magnetic resonance imaging (fMRI) studies of EF in ASD have dem-onstrated diminished brain activation compared to controls, with some exceptions (reviewed in Sol-omon et al. (2009)). Several functional studies using different imaging techniques including fMRI, electroencephalography (EEG), and mag-netoencephalography (MEG) have reported abnormalities in mirror mechanisms in ASD. In neurotypicals, action observation is typically associated with a suppression of the mu

in ASD. In neurotypicals, action observation is typically associated with a suppression of the mu rhythm in the EEG signal – a phenomenon that seems absent in ASD (Oberman et al. 2008). Using transcranial magnetic stimulation (TMS), Theoret et al. (2005) have demonstrated that TMS applied over the primary motor cortex did not modulate the excitability of the primary motor cortex in children with ASD, contrary to controls. fMRI studies in children and in adults have reported weaker activation of

contrary to controls. fMRI studies in children and in adults have reported weaker activation of the frontal opercu-lum during face or body emotion expression per-ception (Dapretto et al. 2006; Hadjikhani et al. 2007; Hadjikhani et al. 2009). However, recent studies report normal (Dinstein et al. 2010) or even enhanced (Martineau et al. 2010) activation of mirror sys-tem areas during action observation, or during perception of facial expression of pain (Hadjikhani et al. 2014), leaving the

or during perception of facial expression of pain (Hadjikhani et al. 2014), leaving the question of atypical activity of the MNS in autism open. One of the current hypoth-eses about social impairments in autism is a lack of social motivation, due to a decreased reward value for social stimuli. A recent systematic review and meta-analysis (Clements et al. 2018), including 30 studies, points to hypoactivation of the anterior cingulate in ASD during social rewards, nonsocial rewards, and

to hypoactivation of the anterior cingulate in ASD during social rewards, nonsocial rewards, and restricted interests. Normal activa-tion has been reported in middle prefrontal cortex during social-emotional tasks (Schulte-Ruther et al. 2010). However, hypoactivation has been observed during tasks of joint attention (Zürcher et al. 2013; Oberwelland et al. 2017). Abnormal (increased) anterior cingulate activation has been shown in response to correct trials during response moni-toring in ASD

activation has been shown in response to correct trials during response moni-toring in ASD (Thakkar et al. 2008). In summary, functional activation studies remain controversial, and a better understanding of frontal functions in autism will require further investigation.

Functional Connectivity Studies  A common finding of functional connectivity studies has been the presence of underconnectivity in ASD between large-scale networks and over-connectivity in small-scale networks. In most studies specifically addressing connectivity of the motor system (Mostofsky et al. 2009) and of the EF system (Just et al. 2004; Kana et al. 2007; Koshino et al. 2005; Solomon et al. 2009; Thakkar et al. 2008), underconnectivity was reported. However, other groups show no

et al. 2009; Thakkar et al. 2008), underconnectivity was reported. However, other groups show no differ-ences (Lee et al. 2009) or even increased (Shih et al. 2010) connectivity in the frontal regions in ASD (superior frontal and anterior cingulate) – concluding to atypical connectivity of the imita-tion network with an enhanced role of the dorsal prefrontal cortex. The different findings of resting-state functional connectivity in autism have recently been reviewed by Hull et al. (Hull et al.

functional connectivity in autism have recently been reviewed by Hull et al. (Hull et al. 2016). One major caveat needs to be kept in mind for functional connectivity studies: we know that that slightly different motion magnitudes may induce spurious differences between groups, and this fac-tor needs to be specifically addressed in studies (Van Dijk et al. 2012).

Perspectives  Because of the developmental trajectory of exec-utive functions and of the frontal lobes in general, future studies will need to have larger number of participants, with homogeneous age groups and cognitive abilities (IQ). In addition, functional studies will need to be designed so that behavioral performance is equal between groups, if brain activations need to be compared for a specific task.

Frontal Lobe Syndrome  Nicole Rinehart1,2, Peter Enticott2 and John Bradshaw2 1Deakin Child Study Centre, School of Psychology, Faculty of Health, Deakin University, Geelong, VIC, Australia
2Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, VIC, Australia
 Synonyms  Disorder of executive dysfunction; Dysexecutive syndrome; Frontostriatal disorder

Short Description or Definition  The frontal lobes are the slowest regions of the central nervous system to fully develop, rendering them more susceptible to neurodevelopmental disorders, such as autism spectrum disorder, than any other region (Bradshaw 2001). The frontal lobes form part of key brain regulatory circuitry where multiple cortico-striato-thalamo-cortical loops connect the frontal lobes to the rest of the brain. Frontal lobe syndromes have in common abnormalities in structure and

to the rest of the brain. Frontal lobe syndromes have in common abnormalities in structure and chemical balance in the frontal lobes, basal ganglia, and thalamus. Abnormalities in these structures and chemical imbalances are proposed to lead to deficiencies in the domains of cognition, emotions, and motor control. A mixture of these deficiencies can explain the symptomatology observed in classic frontal syndromes of childhood, for example, autism, Asperger’s disorder (henceforth to be referred to

syndromes of childhood, for example, autism, Asperger’s disorder (henceforth to be referred to as “autism spectrum disorder”), and attention deficit hyperactivity disorder (ADHD), and neurodegenerative frontal disorders, for example, Parkinson’s and Huntington’s disease.

Categorization  Disorders which arise from damage to the frontal lobes are often referred to under the umbrella term of “frontal lobe syndrome.” Frontal lobe syn-drome can result as the consequence of: (1) devel-opmental problems with the frontal lobe, as is the case with autism spectrum disorder, ADHD, obsessive compulsive disorder (OCD), Tourette’s disorder (TD) schizophrenia, and depression, (2) degeneration of the frontal lobes, for example, Parkinson’s disease, Alzheimer’s disease, and

(2) degeneration of the frontal lobes, for example, Parkinson’s disease, Alzheimer’s disease, and Huntington’s disease, or (3) Acquired brain injury, for example, stroke or traumatic brain injury. While autism is defined in DSM-IV-TR (American Psychiatric Association 2000) as a psychiatric disorder, it is commonly referred to as a disorder which crosses the psychiatry-neurology divide, involving both “psychiatric” and “neurological” symptoms. When we con-sider autism under the umbrella of a

both “psychiatric” and “neurological” symptoms. When we con-sider autism under the umbrella of a “frontal lobe syndrome,” we group autism with other disorders where vital brain pathways which con-nect the frontal lobes to the rest of the brain are disrupted, either through genetic abnormalities, or environmental insult. While some of these disorders fall within the categorization of “neu-rological” disorders, for example, Parkinson’s disease, others fall under the categorization of psychiatric

disorders, for example, Parkinson’s disease, others fall under the categorization of psychiatric disorders, for example, autism and ADHD. It has been argued that the division between neurology and psychiatry is in many ways arbitrary; in the case of autism, frontal-related symptoms such as “repetitive motor man-nerisms” could be considered as a neurological “motor disorder” or as a psychiatric “persevera-tive” phenomenon. The question remains whether the presence of a particular frontal lobe

“persevera-tive” phenomenon. The question remains whether the presence of a particular frontal lobe syndrome is a necessary precursor for the development of autism and AD, given that some autistic behaviors (e.g., stereo-typed or ritualistic activities) are present in other childhood psychiatric disorders, such as TD, OCD, and ADHD. It may be considered that autism, TS, OCD, and ADHD are five clusters of behaviors that represent disorders in several dis-crete dimensions, such as communication,

of behaviors that represent disorders in several dis-crete dimensions, such as communication, social skills, or stereotyped/ritualistic/obsessive behav-ior. Autism and AD may be thought of as occur-ring at the same end of the social ability continuum, but as occurring at different ends of the communication ability continuum, while OCD and TS may lie toward the less-impaired ends of these dimensions. Alternatively, on the stereotyped movements-obsessive behaviors dimension, autism and TS may be

Alternatively, on the stereotyped movements-obsessive behaviors dimension, autism and TS may be thought of as occurring at the “stereotyped movement” end of the continuum, with OCD occurring at the “obses-sive behaviors” end. These diagnostically distinct disorders may simply reflect different combina-tions of a finite set of behavioral disturbances (Bradshaw 2001).

Epidemiology  ASDs are highly prevalent with the incidence estimated at between 60 and 90 per 10,000 indi-viduals (Autism and Developmental Disabilities Monitoring Network Surveillance Year, Principal Investigators, Centers for Disease Control and Prevention 2009; Fombonne 2009), although a recent study of students aged between 5 and 9 years in the United Kingdom sets this estimate to approximately 160 in 10,000 (Baron-Cohen et al. 2009). It is likely that the apparent increase in prevalence

160 in 10,000 (Baron-Cohen et al. 2009). It is likely that the apparent increase in prevalence is due to better diagnosis and aware-ness in the general public. The apparent “epi-demic” of ASD is similar to the increased ascertainment of ADHD in the 1990s. For this reason, “ASD” is sometimes referred to in the context of being the “new ADHD.” Although the precise cause of executive dys-function in ASD is not known, researchers have used neuroimaging and electrophysiological tech-niques to

in ASD is not known, researchers have used neuroimaging and electrophysiological tech-niques to demonstrate atypical activation across a range of frontostriatal cortical and subcortical structures. This includes, for example, hypo-activation of inferior frontal gyrus, orbitofrontal cortex, and ventral medial prefrontal cortex, and hyperactivation of supplementary motor area, dor-sal anterior cingulate, and middle frontal gyrus. This is presumably underpinned by various neu-rochemical

cingulate, and middle frontal gyrus. This is presumably underpinned by various neu-rochemical abnormalities that have demonstrated relevance to both executive function and ASD, including abnormal serotonergic, dopaminergic, glutamatergic, and GABAergic function. More recent evidence also points to the role of impaired neural connectivity within frontostriatal circuitry, which includes reduced integrity of white matter pathways. There are, however, no consistent results in ASD demonstrating

integrity of white matter pathways. There are, however, no consistent results in ASD demonstrating structural abnor-malities (e.g., lesions) that reflect what is typically seen in frontal lobe syndrome (FLS) associated with acquired or neurodegenerative presentations.

Natural History, Prognostic Factors, Outcomes  While autism manifests in the first 3 years of life, the full extent of the disorder unfolds as the slowly developing frontal lobes reach maturity; this in part contributes to the changing clinical manifes-tation of autism throughout childhood and adoles-cence (see “Clinical Presentation” below). The term most commonly used to describe the impairments which arise from disruption to the frontal lobes is “executive dysfunction.” Execu-tive

impairments which arise from disruption to the frontal lobes is “executive dysfunction.” Execu-tive dysfunction can be thought of as a loss or disruption to skills which we require to interact in a flexible way with the environment, solve prob-lems, plan, engage efficiently in goal-directed behavior, and defer or inhibit responses. Overall, frontal lobe syndrome results in a deficit in maintaining appropriate problem-solving set for the attainment of future goals (Bradshaw 2001). Pennington et al.

problem-solving set for the attainment of future goals (Bradshaw 2001). Pennington et al. (1997) proposed the “execu-tive dysfunction hypothesis” of autism spectrum disorder on the basis that there is severe, early disruption to the frontal areas, disrupting the abil-ity to plan complex behaviors. Working memory deficits are also noted as being important to this theory. Poor performance on tests of executive functioning is common in children with autism. Neuropsychological research has shown

of executive functioning is common in children with autism. Neuropsychological research has shown that two core aspects of frontal lobe function are dis-turbed in autism: (1) reduced cognitive flexibility, which refers to the ability to shift one’s focus of attention from one feature, or cognitive set, to another and (2) perseveration, which refers to a tendency to repeat a verbal or nonverbal behavior beyond what is required. These frontal syndrome deficits underpin the daily challenges a child

beyond what is required. These frontal syndrome deficits underpin the daily challenges a child with autism experiences with planning and organizing tasks required for everyday life. The ability to sustain attention and inhibit responses has been shown to be generally intact in individuals with autism using standardized neuropsychological tests (see “Evaluation and Differential Diagnosis” below). Using more novel experimental paradigms, there is some evidence to suggest that one aspect of

Using more novel experimental paradigms, there is some evidence to suggest that one aspect of inhibitory function may be impaired in autism, verbal inhibition (see Rinehart et al. 2006). Such deficits are also seen in patients with neurodegen-erative “frontal lobe” syndrome, Parkinson’s and Alzheimer’s disease, and neurodevelopmental dis-orders such as schizophrenia.

The difficulties an individual with autism has with cognitive flexibility persist into adult life. In contrast to children with autism, adults with autism can develop better skills for managing executive dysfunction, either through further acquirement and practice of techniques to scaffold executive difficulties (see “Treatment” below), via greater insight into their own inflexibility, or through greater desire to follow the rules and behaviors necessary for successful adult life. There is some

greater desire to follow the rules and behaviors necessary for successful adult life. There is some evidence that children with autism experience a “second wave” of executive deficits around puberty due to a divergence in the developmental trajectory of the frontal lobes (Minshew and Williams 2007). At around this time children with autism are also likely to suffer from depression; this may manifest as mood dis-turbance and irritability, sleep and appetite distur-bance, and thoughts of suicide

as mood dis-turbance and irritability, sleep and appetite distur-bance, and thoughts of suicide (Tonge and Rinehart 2006). Organizational and planning def-icits can become more pronounced when children are depressed or anxious. In addition to pubertal brain development, particularly impacting on the frontal lobes, the increased vulnerability to depression during adolescence may be associated with increased insight into the disorder. Gradua-tion from Primary School, or other change in

with increased insight into the disorder. Gradua-tion from Primary School, or other change in educational placement, which tends to coincide with puberty, is often a major stress for children with autism. When individuals with autism exhibit self-injury and aggression, in addition to executive dysfunction, as often occurs with indi-viduals who have associated intellectual disabil-ity, this can result in socially inappropriate and “disinhibited” behavioral patterns which can reduce successful

result in socially inappropriate and “disinhibited” behavioral patterns which can reduce successful participation in the school and community settings, and may require more restricted care plans. Comorbidity with other neurodevelopmental disorders, which fall under the umbrella term of “frontal lobe syndromes,” may also impact on quality of life. This comorbidity may be geneti-cally determined, as is likely the case with ADHD, a stress-induced vulnerability, or both, as is the case for

as is likely the case with ADHD, a stress-induced vulnerability, or both, as is the case for Tourette’s disorder. For example, clini-cally significant symptoms consistent with ADHD are reported to be highly prevalent in children with autism spectrum disorder. (Note that despite this overlap in diagnostic symptoms, our major diagnostic classification system (DSM-IV-TR) currently precludes a dual-diagnosis of autism and ADHD.). There is some empirical evidence that children who present with autism

of autism and ADHD.). There is some empirical evidence that children who present with autism and clinically significant levels of ADHD have higher levels of emotional-behavioral distur-bances (Gargaro et al. 2010). In the case of Tourette’s disorder, a frontal syndrome vulnera-bility, together with environmental stress, possi-bly related to biological or situational changes (see above), may trigger the comorbid presenta-tion of Tic disorder or full-blown Tourette’s disorder.

Clinical Expression and Pathophysiology  Executive dysfunction, in part, gives way to one of the most striking paradoxes of autism, the contrasting and uneven development of skills, sometimes characterized by peaks in certain areas of intellect, artistic, or numerical ability, which occur in the context of an impoverished ability to manage and organize the tasks necessary for daily life. In general, the impact of executive dysfunction on an individual with autism varies according to the

general, the impact of executive dysfunction on an individual with autism varies according to the individuals’ intellectual ability, capacity for independent functioning, and provi-sion of social, emotional, financial, and later, occupational support. It has been suggested that individuals with associated intellectual disability and epilepsy are at greater risk for deterioration during early adulthood, while there may be some improvement in functioning in normally intelli-gent young adults with

while there may be some improvement in functioning in normally intelli-gent young adults with ASDs. Frontal lobe syndrome or executive dysfunc-tion is commonly linked to the repetitive, stereo-typed behavioral patterns which are core diagnostic features of autism (Turner 1999). The repetitive behavioral patterns may be due to a difficulty inhibiting previously relevant response patterns, or may be due to a problem with gener-ating new ideas and responses (Turner 1999). Common repetitive,

may be due to a problem with gener-ating new ideas and responses (Turner 1999). Common repetitive, restricted, and stereotyped behavioral patterns include: lining up toys or objects, being preoccupied with special objects such as stones, repeating play sequences, obses-sions with train timetables or dinosaurs. Individ-uals with autism may have a number of rituals associated with daily life, such as a fixed order for bathing and dressing, or an insistence on wearing the same clothes or taking the

a fixed order for bathing and dressing, or an insistence on wearing the same clothes or taking the same route to a familiar place. These rituals go beyond what is normally seen in typically developing children. There are usually some motor mannerisms, such as hand flapping, or tiptoe walking and gait abnormality. The symptoms of frontal lobe syndrome in autism cannot be neatly separated out from the broader network of behavior-brain disruptions which characterize autism. For example, children

the broader network of behavior-brain disruptions which characterize autism. For example, children with autism may study the detail in a picture book or closely observe spinning wheels, or a ceiling fan; this may be due to problems with disengaging from interests (executive dysfunction), or it might be due to an overly developed visual-perceptual system which enhances the experience of looking at small objects (Plaisted et al. 1999). Similarly, a child with autism may have difficulty interacting

small objects (Plaisted et al. 1999). Similarly, a child with autism may have difficulty interacting with the peer group, not primarily because of social impairments related to “theory of mind” deficits, but perhaps because of an inability to shift attentional set from his or her own topics of interest. Therefore, a child with autism may engage in a monologue of speech about his favor-ite interests rather than a reciprocal dialogue with his peers either due to executive-based inflexibil-ity, or

rather than a reciprocal dialogue with his peers either due to executive-based inflexibil-ity, or due to a poor understanding that “turn taking” is required in productive social conversa-tions (theory of mind deficit). The clinical manifestation of frontal lobe syn-drome may differ in girls with autism in a way which is consistent with gender-related differ-ences in the typically developing population of male and female children. For example, while boys may have an intense preoccupation with

of male and female children. For example, while boys may have an intense preoccupation with vehicles, such as trains and cars, girls may develop their special interests in areas such as teddy-bear or doll collections, and spend unusual amounts of time on craft and art to the exclusion of other types of play. Gender-neutral activities, such as “drawing,” may form the “special inter-est” for either males or females with autism. It has been suggested that females tend to have fewer special

either males or females with autism. It has been suggested that females tend to have fewer special interests than males with autism (Gillberg and Coleman 2000), although this may relate to male interests being more circumscribed (e.g., trains, cars) than female interests (e.g., craft, doll play), and thus more clinically salient.

Pathophysiology  Development of the frontal lobes is guided by regulatory genes which lay down and prune brain pathways (referred to as apoptosis), and set the timing of how the brain will be “wired” (referred to as synaptic connectivity). There is a disturbance in these regulatory genes in autism which results in atypically developing frontal regions. The current literature points to the devel-opmental time course of brain development being the salient disturbance, rather than the “final

time course of brain development being the salient disturbance, rather than the “final prod-uct” of brain development in autism (Amaral et al. 2008, p. 137). The unfolding neurobiological dis-ruptions which characterize autism may contrib-ute to the changes in core symptoms of autism we see over time, such as stagnation and regression in social-communicative symptoms, and changes in the focus of obsessions and nature of repetitive behavioral patterns. Bradshaw’s (2001) frontostriatal theory

of obsessions and nature of repetitive behavioral patterns. Bradshaw’s (2001) frontostriatal theory pro-vides the most comprehensive review of the pathophysiology of “frontal lobe” syndrome in the context of neurodevelopmental disorders. According to this theory, the frontostriatal system involved in neurodevelopmental disorders com-prises the dorsolateral prefrontal cortex, the lateral orbitofrontal cortex, the anterior cingulate, the sup-plementary motor area, and the basal ganglia. These

cortex, the anterior cingulate, the sup-plementary motor area, and the basal ganglia. These areas are involved in a number of functions, such as executive functions (e.g., functions such as self-monitoring, planning, organization, flexibility of thinking, and inhibition), motivation, control of complex behaviors, and sequencing movements. A number of neurotransmitters are implicated in the frontostriatal system, including dopamine, nor-adrenaline, acetylcholine, GABA (inhibitory), glu-tamate

system, including dopamine, nor-adrenaline, acetylcholine, GABA (inhibitory), glu-tamate (excitatory), and serotonin.

Evaluation and Differential Diagnosis  Frontal lobe syndrome (FLS) resulting from acquired brain injury involves impairment in cognitive and/or mood domains that are presumed to be largely governed by neural circuitry involving the frontal lobe. This may include difficulties with planning, organization, daily living skills, atten-tion, and social cognition. Individuals with FLS may be disinhibited and impulsive, and this can include aggression or inappropriate sexual, finan-cial, or other

and impulsive, and this can include aggression or inappropriate sexual, finan-cial, or other behaviors. Depression, anxiety, and apathy are often also present. FLS in the purest sense is thought to arise from a lesion, be it from disease or trauma. This lesion can occur anywhere within fronto-striatal-thalamic circuitry, and the nature and degree of impairment is related to the site of injury. As noted above, FLS can also relate to neurodevelopmental, e.g., ASD and neurodegener-ative disorders,

noted above, FLS can also relate to neurodevelopmental, e.g., ASD and neurodegener-ative disorders, e.g., Parkinson’s disease. In addition to deficits in executive function, FLS syndrome can also involve impaired social functioning, including poor emotion recognition and theory of mind, and perseverative and repet-itive behaviors. Individuals with FLS can also be quite rigid and concrete in their thinking. For these reasons, ASD is often referred to under the FLS umbrella. In addition, there is

thinking. For these reasons, ASD is often referred to under the FLS umbrella. In addition, there is much evidence for executive deficits among individuals diag-nosed with an ASD, and this can include problems with planning, time estimation, attentional set-shifting, and response inhibition. Obtaining a thorough and careful developmen-tal history is critical for differential diagnosis. Symptoms of FLS related to lesions typically have a relatively rapid onset, and are recognized because they are

FLS related to lesions typically have a relatively rapid onset, and are recognized because they are uncharacteristic of the individ-ual. ASD, on the other hand, generally must first present within certain time periods, and there is emerging evidence to suggest that some symp-toms are present in infancy. When assessing indi-viduals later in life (e.g., adolescence onward), it is crucial to involve family members in the diag-nostic process, and to conduct a structural mag-netic resonance imaging

family members in the diag-nostic process, and to conduct a structural mag-netic resonance imaging (MRI) brain scan. Assessment for autism spectrum disorder (ASD) should include neuropsychological testing, which at a minimum would involve an age-appropriate, standardized cognitive assessment, but perhaps also tests of executive function. This might include inhibitory controls (e.g., word-color Stroop test), attentional set-shifting (e.g., Wisconsin Card Sorting Test), and planning/ organization

test), attentional set-shifting (e.g., Wisconsin Card Sorting Test), and planning/ organization (e.g., Tower of Hanoi, Trail making test). Verbal fluency assessment may also be used (e.g., FAS). This will characterize an individual’s strengths and weaknesses, and allow clinicians to devise an appropriate treatment plan that meets the individual’s needs. For very young children, or those for whom standardized assessment is not possible, parent and teacher report can provide insights into relative

assessment is not possible, parent and teacher report can provide insights into relative strengths and weaknesses, including problematic behaviors.

Treatment  Psychosocial  Training in problem solving and organizational skills can be useful for targeting difficulties with generating new or novel behaviors and moving the individual away from rigid thinking styles. Interventions which capitalize on a child’s special interests, for example, technology, may improve compliance. Reminders, schedules, visual pro-mpting (e.g., when I finish playing trains, I can choose from a list of these activities to do), and executive-function “scaffolding” by

I can choose from a list of these activities to do), and executive-function “scaffolding” by care-givers, (e.g., breaking down tasks into smaller compo-nents, helping individuals to structure daily events to prevent becoming submerged in one activity during the day, assisting with school-based tasks) are often helpful.

Pharmacological  Drugs might be prescribed where psychological and behavioral interventions have not been successful in the management of disturbed emo-tions and behaviors, in particular, repetitive self-injurious behaviors which place children at greater psychological and physical risk. There is some evidence that neuroleptic medication (e.g., haloperidol, risperidol) reduces repetitive and stereotyped behaviors; however, it may produce side effects including sedation, dystonic reactions, and

behaviors; however, it may produce side effects including sedation, dystonic reactions, and increased weight gain. Unlike the original neuroleptic medications, new atypical drugs are not associated with the risk of irreversible tardive dyskinesia. Tricyclic antidepressants (e.g., imip-ramine, clomipramine) are effective anxiolytics, and may also reduce repetitive behaviors, but may have potential cardiotoxic effects (Tonge and Rinehart 2006). Parents may be stressed by the uncertainty of

cardiotoxic effects (Tonge and Rinehart 2006). Parents may be stressed by the uncertainty of potential long-term effects of plac-ing their child on medication. Currently there is a lack of good long-term evidence for the effective-ness of stimulant medication on learning but they may decrease the risk of later substance abuse (Tonge and Rinehart 2006).

Functional Analysis Screening Tool  Robert H. LaRue Douglass Developmental Disabilities Center, Rutgers, The State University of New Jersey, New Brunswick, NJ, USA

Synonyms  FAST (Functional Assessment Screening Tool)  Description  The FAST is a type of indirect functional assess-ment method. It is comprised of a self-report checklist designed to identify whether maladap-tive behavior is maintained via attention and tangibles, escape, sensory stimulation, or pain attenuation. Prior to the rating scale section of the instru-ment, the FAST has two information sections: Informant-Client Relationship and Problem Behavior Information. The Information-Client

sections: Informant-Client Relationship and Problem Behavior Information. The Information-Client Relationship section contains four questions regarding the informant-client relationship (e.g., relationship to the client, how often and in what situations they interact). The Problem Behavior Information section contains eight questions regarding the topography, frequency, and severity of the target behavior. The checklist section contains 16 items. Each question is marked as either “yes,” “no,”

behavior. The checklist section contains 16 items. Each question is marked as either “yes,” “no,” or “not applicable.” Items endorsed with a “yes” are then categorized into one of the four possible sources of reinforcers for problem behavior: attention/preferred items (social positive rein-forcement), escape (social negative reinforce-ment), sensory stimulation (automatic positive reinforcement), and pain attenuation (automatic negative reinforcement). Behavioral function is inferred by

and pain attenuation (automatic negative reinforcement). Behavioral function is inferred by calculating a summary score for the four possible maintaining variables. The FAST interview process is 10–15 min in length.

Historical Background  The FASTwas originally developed in 1995, as an adjunct to functional analysis procedures. The scale underwent several revisions before the most recent version, which was released in 2005. The initial scale included 34 items. After field-testing the FAST with over 300 individuals, the item pool was reduced to the present 16 items.

Psychometric Data  Psychometric data for the FAST are generally sparse. Zaja et al. (2010) evaluated and compared the psychometric properties of the Questions About Behavioral Function (QABF) scale (Matson and Vollmer 1995), the Functional Assessment for Multiple Causality (FACT) scale (Matson et al. 2003), and the FAST for the indirect assessment of self-injurious, stereotypic, and aggressive/destructive behavior. The FAST sub-scales generally showed the lowest inter-rater agreement with

behavior. The FAST sub-scales generally showed the lowest inter-rater agreement with correlations ranging from poor to good relative to the QABF and FACT. Zaja et al. also found that the FAST had unacceptably low internal consistency especially for the social attention and social escape subscales. The authors indicated that the weaker psychometrics proper-ties (reliability and validity) for the FAST were likely related to its length, limited response format (“Yes”⁄“No”⁄“NA”), and restricted

FAST were likely related to its length, limited response format (“Yes”⁄“No”⁄“NA”), and restricted range of sub-scales (4 instead of 5). Iwata et al. (2013) evaluated the reliability and validity of the FAST. In the first study, the authors assessed the interrater reliability of the FAST with 196 problem behaviors through independent administration of the assessment to pairs of raters. The average item-by-item agreement between pairs of raters was 71.5%, with a range of 53.3–84.5%. In the second

item-by-item agreement between pairs of raters was 71.5%, with a range of 53.3–84.5%. In the second part of the investigation, the authors compared the results of the FAST to the results of 69 functional analyses. The authors found that the FAST predicted the primary function of challenging behavior 63.8% of the time. The authors note that, while the results are comparable to other indirect assessment tools, they are not an adequate substitute for functional analysis procedures.

Clinical Uses  The FAST is an indirect functional assessment procedure. The purpose of the instrument is to provide preliminary information regarding the cause (of function) of maladaptive behavior. The information gathered from the FASTcan be incor-porated into direct assessment methods. Given the questionable reliability of most indirect assess-ment measures (such as interviews and rating scales), it is often recommended that these methods be employed in conjunction with direct observation

it is often recommended that these methods be employed in conjunction with direct observation and/or functional analysis procedures and not as the sole means to determining behav-ioral function (Zarcone et al. 1991).

Functional Analysis: Assessment Procedures for Complex Challenging Behavior  Mark Palmieri1 and Kimberly Marshall2 1Feeding Clinic, Center for Children with Special Needs Glastonbury, CT, USA 2Center for Children with Special Needs, Glastonbury, CT, USA  Definition  Assessing behavior through data-based collection procedures is a necessary component of applied behavior analysis (Cooper et al. 2007). The primary goal is to establish a reliable relationship between the treatment and behavior

2007). The primary goal is to establish a reliable relationship between the treatment and behavior change. This concept forms the basis for the assessment of challenging behavior in applied behavior analysis. Functional analysis is the procedure by which environmental conditions are manipulated to reliably evoke a tar-get behavior (Carr and Durand 1985; Cooper and Harding 1993; Iwata et al. 1982/1994a, 1990; O’Reilloy et al. 2009; Roscoe et al. 2010). Based upon the results of these

al. 1982/1994a, 1990; O’Reilloy et al. 2009; Roscoe et al. 2010). Based upon the results of these assessments, maladaptive behavior is conceptualized as being motivated by a particular function, thus allowing appropriate inter-ventions to be developed. An important component of functional analytic methodology is that behavior must be understood by its consequences within the environment and not solely by its topography or form (Cooper and Harding 1993). The majority of functional analysis

not solely by its topography or form (Cooper and Harding 1993). The majority of functional analysis procedures currently used are based upon the seminal work of Iwata et al. (1982/1994a). Functional analysis methodology has been applied to a variety of treatment settings. The original research on these procedures was conducted in highly controlled treatment settings (Carr and Durand 1985; Cooper and Harding 1993; Iwata et al. 1982/1994a, 1990). In these environments, experimenters have exposed

and Harding 1993; Iwata et al. 1982/1994a, 1990). In these environments, experimenters have exposed par-ticipants to repeated treatment conditions in order to establish a reliable relationship between environmental contingencies and the occurrence of a target behavior (Carr and Durand 1985; Iwata et al. 1982/1994a, 1990). Research attention has expanded toward evaluating the use of functional analytic procedures in outpatient and community-based settings with less precise and sustained con-trol

procedures in outpatient and community-based settings with less precise and sustained con-trol (Cooper and Harding 1993). Further, func-tional analytic models have evolved to include a variety of brief methodologies which have gained substantial evidence-based support (e.g., LaRue et al. 2010; Thomason-Sassi et al. 2011). The ongoing research on functional analysis continues to provide a great deal of support for its methods to represent the best practice means of assessing challenging behavior

of support for its methods to represent the best practice means of assessing challenging behavior (e.g., Cooper et al. 1992; Derby et al. 1992, 1994; Ruiz and Kubina 2017).

Historical Background  Carr (1977) established the conceptual foundation for functional analysis. The model for clinical prac-tice is associated with the work of Iwata et al. (1982/1994a) and Carr and Durand (1985). The method-ology developed in these studies has since been widely examined and used in the applied behavior analysis literature (Hanley et al. 2003). The initial study by Iwata et al. (1982/1994a) utilized four assessment conditions to evaluate self-injurious behavior in nine

et al. (1982/1994a) utilized four assessment conditions to evaluate self-injurious behavior in nine individuals diagnosed with devel-opmental disability, ranging in age from 19 months to 17 years and 2 months. The conditions included in the functional analysis were social disapproval, academic demand, unstructured play, and alone. During the assessments, conditions lasted for 15 min and were randomly ordered for each partic-ipant. The functional analysis continued until stable levels of

randomly ordered for each partic-ipant. The functional analysis continued until stable levels of responding were observed in each condi-tion, or until 12 days of assessment were completed. The social disapproval condition was designed to replicate contingencies for positive reinforce-ment in the form of attention for engaging in self-injury. The participant was instructed to play with toys while the experimenter worked. If the partic-ipant engaged in self-injury, the experimenter pro-vided

the experimenter worked. If the partic-ipant engaged in self-injury, the experimenter pro-vided physical and vocal attention. The academic demand condition tested for the presence of neg-ative reinforcement contingencies in the form of escape from work for engaging in self-injury. The experimenter ran academic programs appropriate to each participant’s ability level. Social praise was delivered after each response whether or not the response was correct. If the participant engaged in

after each response whether or not the response was correct. If the participant engaged in self-injurious behavior, the experi-menter turned away and terminated the learning trial. The alone condition was designed to assess for self-injurious behavior maintained by auto-matic reinforcement. The participant was left alone without access to attention or tangible items. The experimenter did not provide a conse-quence for an occurrence of self-injury. Finally, the unstructured play condition served

a conse-quence for an occurrence of self-injury. Finally, the unstructured play condition served as a control condition for the functional analysis. In this con-dition, the experimenter provided noncontingent attention and access to toys and gave no demands. Again, no consequence was provided contingent upon an occurrence of self-injury. Operational definitions were created for each participants’ topography of self-injury to address individual differences. Interobserver agreement was calculated

topography of self-injury to address individual differences. Interobserver agreement was calculated to ensure that all observers were able to reliably identify all the topographies of challenging behavior. The results of the Iwata et al. (1982/1994a) study demonstrated that simi-lar topographies of behavior can serve different functions. In their study, the level of responding varied from individual to individual across the assessment conditions. As a result of these data, Iwata et al.

individual to individual across the assessment conditions. As a result of these data, Iwata et al. (1982/1994a) supported functional analysis as a means of systematically evaluating the stimuli maintaining behavior and subse-quently the use of individualized assessment and intervention procedures for self-injurious behavior. Carr and Durand (1985) echoed the Iwata et al. (1982/1994a) results, showing that similar forms of challenging behavior can be maintained by different contingencies in each

that similar forms of challenging behavior can be maintained by different contingencies in each individual. The study evaluated a number of topographies of chal-lenging behavior experienced by four partici-pants, ages 7–14 years, with either developmental disabilities or brain damage. The functional analysis conditions were designed to assess escape and attention motivations for each target behavior. The “easy 100” condition served as the control condition for the analysis. In this condition,

The “easy 100” condition served as the control condition for the analysis. In this condition, the experimenter provided easy demands and attention during 100% of the condi-tion’s intervals. In the “easy 33” condition, the experimenter again utilized easy demands but only provided attention during 33% of the inter-vals. This condition was used to assess for an attention motivation for each target behavior. Dur-ing the “difficult 100” condition, the participants were given challenging demands and

behavior. Dur-ing the “difficult 100” condition, the participants were given challenging demands and attention during 100% of the condition’s intervals. It was expected that this condition would assess for an escape function maintaining any target behavior. Consequences were provided for all topogra-phies of behavior in the same manner during each condition. All behavior except darting and responses that risked physical injury were placed on extinction (Carr and Durand 1985). If the par-ticipant

that risked physical injury were placed on extinction (Carr and Durand 1985). If the par-ticipant darted from work and did not return in 10 s, she or he was physically guided back to the table. In cases where physical risk was a concern, the participant’s hands were restrained for 5–10 s while the experimenter followed through with the work demands. The results of the functional ana-lyses suggested that the various forms of challeng-ing behavior of the participants were maintained by different

that the various forms of challeng-ing behavior of the participants were maintained by different environmental contingencies. The data from the Carr and Durand study supported those obtained by Iwata et al. (1982/1994a). That is, functional analysis was endorsed as a means for evaluating challenging behavior. Carr and Durand (1985) further supported functional analysis as a means of assessing and treating challenging behavior by implementing functional communication training for each of the

and treating challenging behavior by implementing functional communication training for each of the participants. The target of the training was requests for attention and help as a replacement for challenging behavior reinforced by attention and escape, respectively. By providing consistent reinforcement for appropriate requests for attention and help, all participants’ challenging behavior decreased. Functionally equivalent inter-ventions were thereby supported as the optimal treatment for

Functionally equivalent inter-ventions were thereby supported as the optimal treatment for challenging behavior.

Contemporary Considerations  A great deal of research has been conducted on functional analysis methodology since the semi-nal studies by Carr and Durand (1985) and Iwata et al. (1982/1994a). Systematic reviews of the literature on functional analysis have consistently supported the procedure’s efficacy in both identi-fying the function of challenging behavior and determining effective replacement skills (e.g., Hanley et al. 2003, 2014; Iwata et al. 1994b; LaRue et al. 2010; O’Reilloy et al.

skills (e.g., Hanley et al. 2003, 2014; Iwata et al. 1994b; LaRue et al. 2010; O’Reilloy et al. 2009; Thomason-Sassi et al. 2011). Hanley et al. (2014) reviewed 575 functional analysis studies, 96% of which rendered usable outcomes. While the functional analysis procedures utilized in typ-ical studies are rarely identical, the basic premise of controlled antecedents and consequences as defined by environmental manipulations has aided in the development of functionally equiva-lent interventions

environmental manipulations has aided in the development of functionally equiva-lent interventions that have shown a decrease in problem behavior and an increase in targeted replacement skills (Hanley et al. 2014; Iwata et al. 1994b). Hanley et al. (2003) reviewed the literature to identify trends for best practices in functional analysis methodology. Their review supported the use of functional analysis to study many topographies of challenging behavior in individ-uals with disabilities of

analysis to study many topographies of challenging behavior in individ-uals with disabilities of varying severities. While a substantial portion of the literature has focused on learners with developmental disabilities or intel-lectual disability, it is important to note that a variety of other mental disorders and mild behav-ior problems have been included in analyses (e.g., Cooper et al. 1990; Doggett et al. 2001). The experimental conditions most prevalent in the literature for analogue

Doggett et al. 2001). The experimental conditions most prevalent in the literature for analogue functional analyses are developed based upon those used by Iwata et al. (1982/1994a). These conditions, social positive rein-forcement (attention), social negative rein-forcement (escape), automatic reinforcement (alone), and control, appear as they were described above. In addition, a tangible condition has been applied to in a number of studies (e.g., Fisher et al. 2000; Moore et al. 2002a; Mueller

has been applied to in a number of studies (e.g., Fisher et al. 2000; Moore et al. 2002a; Mueller et al. 2001; Shirley et al. 1999). In this condition, the individual is given access to a highly preferred item for 1 min at which point the experimenter removes the item and places it out of reach (Mueller et al. 2001). The participant is told that the target item is unavailable and directed toward other low-preference items. Upon the occurrence of the target behavior, the experimenter grants

other low-preference items. Upon the occurrence of the target behavior, the experimenter grants access to the high-preference item. These vari-ables have continued to be incorporated into the conditions of subsequent functional analysis models (e.g., trial-based or response latency; LaRue et al. 2010). Several concerns are common in developing the conditions for a functional analysis. These concerns often focus on the presence of confounds in the assessment conditions (Hanley et al. 2003; Moore

often focus on the presence of confounds in the assessment conditions (Hanley et al. 2003; Moore et al. 2002a; Shirley et al. 1999) as well as the challenges of repeatedly evoking challenging behavior (e.g., Thomason-Sassi et al. 2011). Hanley et al. (2003) noted that while there are not universal firm rules for functional analysis, certain components have been identified that can be considered among best practices. Included here are factors such as limiting assessment to a man-ageable number of

best practices. Included here are factors such as limiting assessment to a man-ageable number of responses, considering the influence of establishing operations on the contin-gencies active in each condition, relatively short sessions, brief designs that can be expanded on an individual basis, and programming for conse-quences (Hanley et al. 2003).

Concerns regarding session confounds are common. For example, such challenges were illustrated by Moore et al. (2002a) regarding the influence that attention can play during a tangible condition. A functional analysis was conducted on a child’s self-injurious behavior (SIB). The results of the analysis suggested that SIB was a multi-operant behavior maintained by positive reinforcement in the form of attention and access to preferred items (Moore et al. 2002a). In a follow-up analysis, the

form of attention and access to preferred items (Moore et al. 2002a). In a follow-up analysis, the level of attention provided during the tangible condition was evaluated. By reducing the amount of attention paired with the presentation of the tangible, the rate of SIB was decreased. Moore et al. (2002a) suggested that the attention inadvertently delivered during the tangi-ble condition was acting as a confound and evok-ing SIB. Weakening the contingency between the target behavior and access

as a confound and evok-ing SIB. Weakening the contingency between the target behavior and access to attention (e.g., deliv-ering attention noncontingently) may serve to control for the influence of confounds (Moore et al. 2002a). If the contingent presentation of attention does confound the tangible condition, it stands to reason that all independent variables should be carefully controlled during the devel-opment of functional analysis sessions. Another similar methodological concern was

during the devel-opment of functional analysis sessions. Another similar methodological concern was identified by Shirley et al. (1999) in a study on incidental maintenance in the tangible condition. A functional analysis conducted on an individ-ual’s hand mouthing suggested that the behavior was maintained by automatic reinforcement and access to tangible items. Observations of the behavior indicated that the preferred items used in the assessment were almost never provided as a natural

indicated that the preferred items used in the assessment were almost never provided as a natural consequence. Therefore, the functional analysis may have identified a tangible function that was not actually maintaining challenging behavior but rather could have maintained behav-ior if it were presented contingently (Shirley et al. 1999). Shirley et al. suggested caution when using the results of a preference assessment without collecting some form of data on the natural envi-ronment.

of a preference assessment without collecting some form of data on the natural envi-ronment. Application across diverse settings and brief session durations have gained increased attention in recent years as pressing topics requiring inves-tigation in the area of functional analysis method-ology. There is now a growing literature base demonstrating the use of functional analysis in less controlled settings such as schools and out-patient clinics (e.g., Cooper et al. 1992; Cooper and Harding

settings such as schools and out-patient clinics (e.g., Cooper et al. 1992; Cooper and Harding 1993; Iwata et al. 2000; LaRue et al. 2010; Moore et al. 2002b; Ruiz and Kubina 2017; Thomason-Sassi et al. 2011; Umbreit 1995). To be useful within a diverse array of settings, consid-erations related to the efficient application of func-tional analysis procedures must be addressed. A study by Wallace and Iwata (1999) consid-ered the influence of session duration on deter-mining function. Forty-six

and Iwata (1999) consid-ered the influence of session duration on deter-mining function. Forty-six individuals participated in functional analyses based on the model described by Iwata et al. (1982/1994a). Tangible conditions were also run for those indi-viduals whose indirect assessment suggested that access to tangible items might evoke the target behavior. The sessions were videotaped, and three sets of data were prepared for each participant, by using the first 5, 10, and 15 min of the

three sets of data were prepared for each participant, by using the first 5, 10, and 15 min of the sessions. Trained independent raters evaluated data from each video. The results rendered strong agreement between the 15- and 10-min sessions and only three disagreements between 15- and 5-min ses-sions. As a result, shorter session duration was supported as a means for increasing the practical application of functional analysis methodology (Wallace and Iwata 1999). Similarly, LaRue et al. (2010)

of functional analysis methodology (Wallace and Iwata 1999). Similarly, LaRue et al. (2010) and Thomason-Sassi et al. (2011) both identified efficiencies in models applying limited session durations while maintain a high degree of correspondence with traditional ana-logue findings. Another concern regarding functional analysis conducted in controlled clinical settings where naturally occurring environmental events are much less likely to influence assessment condi-tions is that the functional

environmental events are much less likely to influence assessment condi-tions is that the functional analysis may suggest a relationship that does not exist in the natural envi-ronment (Hanley et al. 2003). This phenomenon may compromise the ecological validity of the findings. In addition, a long-standing factor in treatment is that most individuals referred for treatment are not admitted directly to inpatient facilities. Typically intervention attempts on an outpatient basis constitute the first

to inpatient facilities. Typically intervention attempts on an outpatient basis constitute the first stage of treat-ment (Cooper et al. 1990). By developing a model compatible with an outpatient treatment facility and using parents during a functional analysis, Cooper et al. (1990) were able to identify the functions maintaining different topographies of challenging behavior and develop successful treatment interventions. This research has contin-ued extensively, and a growing body of research

treatment interventions. This research has contin-ued extensively, and a growing body of research has demonstrated the use of functional analysis procedures in a variety of treatment settings such as outpatient clinics, schools, and homes (e.g., Cooper and Harding 1993; Cooper et al. 1990; Doggett et al. 2001; LaRue et al. 2010; Thomason-Sassi et al. 2011; Umbreit 1995). Doggett et al. (2001) and Umbreit (1995) tested the application of functional analysis meth-odology in classroom

(2001) and Umbreit (1995) tested the application of functional analysis meth-odology in classroom environments. Their studies focused on developing a process in which the conceptual foundations of applied behavior anal-ysis were incorporated with an efficient use of classroom resources. Similar to Cooper et al. (1992) and Cooper and Harding (1993), Doggett et al. and Umbreit suggested the use of indirect data collection procedures, as well as descriptive analyses and observations, to aid in the

data collection procedures, as well as descriptive analyses and observations, to aid in the interpre-tation of functional analysis data; however, the use of such data has not been consistently shown to have high agreement with objective functional analysis outcomes (e.g., Paclawskyj et al. 2008; Zarcone et al. 1991). While correspondence between indirect methods and functional analysis conditions may be low, it has been suggested that such procedures may increase the ecological validity of the

may be low, it has been suggested that such procedures may increase the ecological validity of the analysis (e.g., Fisher et al. 2016). Another pressing issue in the development of functional analysis methods has been the ability to engage multiple participants in the implementa-tion of conditions. This is particularly relevant for those analyses conducted outside of highly con-trolled clinical settings. In the Doggett et al. (2001) study, behavioral consultants assisted gen-eral education

settings. In the Doggett et al. (2001) study, behavioral consultants assisted gen-eral education classroom teachers in conducting an entire functional assessment. The functional analysis component of the assessment was implemented during periods of general classroom instruction. Behavioral consultants trained and supervised the entire assessment procedure, ensuring that the teachers played a primary role in hypothesis development and data analysis. Similarly, in Umbreit (1995), a teacher was

role in hypothesis development and data analysis. Similarly, in Umbreit (1995), a teacher was supported in the implementation of a functional analysis that proved successful in identifying a function of the student’s challenging classroom behavior. In a review of trial-based functional analysis models, Ruiz and Kubina (2017) found that teachers and paraprofessionals were able to implement conditions and that the training for this could occur in short intervals. The successful implementation of

and that the training for this could occur in short intervals. The successful implementation of functional analysis in a variety of settings and with individuals who only require brief training to implement conditions further demonstrates the technology’s use outside of controlled inpatient clinics (Cooper and Harding 1993; Doggett et al. 2001; Umbreit 1995; Ruiz and Kubina 2017).

Future Directions  In addition to modifications to session duration and implementor, changes to session structure have been introduced and are increasingly com-mon (e.g., Bloom et al. 2011; Hanley et al. 2014; LaRue et al. 2010; Thomason-Sassi et al. 2011). Thomason-Sassi et al. found that in latency func-tional analyses where 5-min sessions were used and where the conditions were terminated imme-diately following implementation of a conse-quence, that nine of ten cases showed correspondence

following implementation of a conse-quence, that nine of ten cases showed correspondence between this brief format and stan-dard analyses. Similarly, multiple investigations of trial-based functional analysis models have found strong correspondence with transitional formats. Such models tend to deploy brief conditions that terminate after the first occurrence of a challenging behavior and are either preceded or followed by a condition-specific control phase (or motivating operation absent phase).

preceded or followed by a condition-specific control phase (or motivating operation absent phase). LaRue et al. compared standard analyses with trial-based methods which implemented conditions of 1–2 min in length and found exact correspondence in four of five partici-pants, with partial correspondence found in the fifth case. Similarly, Bloom et al. (2011) determined trial-based functional analysis to be a viable method, particularly for assessments conducted within natural routines and when more

to be a viable method, particularly for assessments conducted within natural routines and when more standard analysis would not be feasible. As trial-based methods have gained increasing attention in the literature, Ruiz and Kubina (2017), in an analysis of 17 trial-based studies, found a number of bene-fits to these models such as implementation within the typical day, few repetitions of severe behavior, shorter session durations, and ease of training implementors. Ongoing efforts to further

behavior, shorter session durations, and ease of training implementors. Ongoing efforts to further improve the effi-ciency and social validity of functional analyses also include investigations to incorporate func-tional assessment interviews and observations to directly inform the development of the functional analysis (Hanley et al. 2014). This suggests that synthesizing multiple assessment and treatment elements within conditions can improve outcomes and the social validity of the analyses.

treatment elements within conditions can improve outcomes and the social validity of the analyses. However, Fisher et al. (2016) questioned the benefits of synthesized conditions, including any improve-ments achieved through use of open-ended inter-views. Though they did note the potential for improved ecological validity from such efforts. This area of development in functional analysis remains actively debated and subject to ongoing research investigations. Functional analysis is considered

actively debated and subject to ongoing research investigations. Functional analysis is considered among the most efficient assessment technologies as it pro-vides data on demonstrated relationships between environmental events and target behavior. This allows for the development of behavior interven-tion and teaching plans that are precisely crafted to the needs of the individual. Functional analytic methods enable investigators to control confounding environmental variables that make direct

methods enable investigators to control confounding environmental variables that make direct observation-based assessments often very difficult. For example, difficulties discriminating whether escaping a difficult demand or gaining access to direct teacher attention is the most rele-vant feature of a student’s noncompliant behavior. Using functional analysis, these variables are pre-cisely controlled. The demonstrated relationship between environmental triggers and behavior leads to therapeutic

The demonstrated relationship between environmental triggers and behavior leads to therapeutic interventions that are func-tionally driven and evaluable. As methods have expanded to include brief and naturally embedded methods, the impact of functional analysis across both research and practice communities has grown substantially.

Functional Behavior Assessment  Mark Palmieri Feeding Clinic, Center for Children with Special Needs, Glastonbury, CT, USA  Synonyms  FBA; Functional assessment  Definition  Functional behavior assessment (FBA) proce-dures are used to investigate the maintaining vari-ables associated with a target response and identify adaptive responses to be taught in order to allow the individual to better meet his or her needs. There are a variety of assessment proce-dures associated with the completion of

his or her needs. There are a variety of assessment proce-dures associated with the completion of a compre-hensive FBA. These may be categorized into indirect and direct measures. Indirect procedures will capture archival information about the patient and allow those who are familiar with the individ-ual and the target response to offer reports. Com-pletion of indirect interviews and questionnaires allows investigators to capture information from many sources in a generally time-efficient

allows investigators to capture information from many sources in a generally time-efficient fash-ion. The information gathered through indirect methods enables investigators to develop a com-prehensive conceptualization of the target behav-ior for the assessment, as well as to capture information relevant to understanding the patient’s needs, life context, learning history, motivators, and interpersonal support system. This information allows investigators to gain insight into common

and interpersonal support system. This information allows investigators to gain insight into common environmental variables associated with the target behavior, specifically including both high- and low-probability con-texts. Indirect data collection tools will address environmental variables such as locations, times of day, individuals present, engagement, demand levels, access to preferred materials, and charac-teristics (e.g., sensory variables) of different environments. Direct data

materials, and charac-teristics (e.g., sensory variables) of different environments. Direct data collection is a required feature of any FBA. The observations must be guided by an operational definition of the target response for the assessment, and all observers must be trained to levels of acceptable reliability on the target. Direct data should be captured across multiple contexts in order to capture a sufficiently comprehensive data set for analysis. This typically includes observations

to capture a sufficiently comprehensive data set for analysis. This typically includes observations across multi-ple days, times of day, and settings (e.g., high- and low-demand environments and high-, low-, and divided-attention environments). Antecedent behavior consequence (ABC) data are among the most commonly collected direct observation data when completing an FBA. These data require the observer to record information on the general environmental context and the exact changes that occurred

to record information on the general environmental context and the exact changes that occurred immediately before and after the occurrence of the target response. The data are analyzed in order to determine common classifi-cations of antecedent and consequence events associated with the target behavior. This informa-tion is then reviewed with all other sources of information collected during the assessment in order to develop a functional hypothesis of the maintaining variables for the

the assessment in order to develop a functional hypothesis of the maintaining variables for the challenging behav-ior and to map replacement skills to teach during intervention phases.

Functional Assessment and Curriculum for Teaching Everyday Routines  John Molteni Institute for Autism and Behavioral Studies, University of Saint Joseph, West Hartford, CT, USA

Definition  The Functional Assessment and Curriculum for Teaching Everyday Routines (FACTER) is a criterion-referenced assessment and curriculum for teaching daily routines and activities of daily living. It is designed to address the needs of indi-viduals with developmental disabilities. FACTER provides task-analyzed skills that cover a variety of skills needed to navigate an individual’s daily environment. There are two versions of FACTER, an elementary level and secondary level. Both

daily environment. There are two versions of FACTER, an elementary level and secondary level. Both consist of formative and summative assessments of student learning and provide a framework for developing and tracking instruction across routines.

Historical Background  The history of FACTER is outlined in the Program Manual (Arick et al. 2000). FACTER was devel-oped to meet the requirements of the Individuals with Disabilities Education Act Amendments of 1997. The first iteration, named the Extended Career and Life Role Assessment System (Arick et al. 2000), was designed to assess individuals who were not participating in statewide or district assessments and meet the state standards for career-related learning. There were several

district assessments and meet the state standards for career-related learning. There were several fea-tures of the Extended CLRAS that allowed the state of Oregon to meet IDEA mandates for reporting assessment results. The first version of FACTER was an extension of the Extended CLRAS that added the instruc-tional component. Individualized lesson plans were added to assist educators in developing instructional programs that complemented the assessments conducted for program planning and

instructional programs that complemented the assessments conducted for program planning and assessing progress on intervention goals and objectives. Progress monitoring was added to sup-port ongoing instructional development and mod-ification and track the effectiveness of interventions. Skills targeted for assessment and instruction were derived from special education standards and areas of functioning referenced in the literature and clinical practices as important for independent living.

Rationale or Underlying Theory  The primary rationale for FACTER is the devel-opment of skills that will maximize independent skill development, a primary goal of special edu-cation. Assessment of skills and instructional practices are developed to maximize student inde-pendence and allow for a complete assessment to goal development and instructional planning to implementation of instruction. The underlying instructional theory is that of direct instruction utilizing task analytic approaches

underlying instructional theory is that of direct instruction utilizing task analytic approaches to instruction. Additional strategies utilized during instruction include visual supports, tactile systems, and social stories. Preteaching of routines and instruction during the routine are implemented during instruction. Criterion-referenced assessment is a critical feature of this program with skills that are broken down into smaller component skills that allow for analysis and progression

skills that are broken down into smaller component skills that allow for analysis and progression through the sequence of behaviors necessary to independently perform the skill.

Goals and Objectives  The goals and objectives of FACTER are related to the instruction of routines and underlying skills related to those routines to enhance a stu-dent’s independent living skills. Individualized goals and objectives are developed based on results obtained in the FACTER assessment phase. Subsequently, lesson plans based on these objectives are developed and implemented utilizing direct instructional approaches. Ongo-ing data collection is utilized to track individual’s

direct instructional approaches. Ongo-ing data collection is utilized to track individual’s progress as well as report the results of larger groups of students. Individual student tracking allows for adjustment of instructional program-ming in response to student performance. Sum-mative assessment utilizing criterion-referenced assessment allows for reporting on Individual-ized Educational Plans and for statewide and district-wide assessments.

Treatment Participants  FACTER is designed for individuals who require special education services with a particular focus on individuals in need of life skills training and those that are not participating in statewide or district-wide assessments. A particular focus is on developing skills that maximize student inde-pendence and align with state educational stan-dards for post-secondary skills that support career, independent living, and involvement within soci-ety as a responsible citizen.

Treatment Procedures  There are three components outlined in the FACTER manual related to treatment procedures. These are:

Assessment Phase  This phase consists of utilizing the Program Man-ual of FACTER to assess the individual’s ability across a variety of domains. These include Living Skills, Transition, Academic, Leisure, and Com-munity at the elementary level with the addition of Career as a domain in the secondary level. During the assessment phase, the educator obtains base-line ratings of routines on a 5-point scale from 0 (does not complete with physical assistance) to 4 (completes independently). An N

scale from 0 (does not complete with physical assistance) to 4 (completes independently). An N can be used to indicate Not Applicable which may be due to physical or medical limitations that prevent the student from engaging in the routine or indi-cates that the routine is deemed inappropriate by the educational team or is not supported by the school environment. Baseline ratings are com-pleted by individuals who are familiar with the student being assessed. Following the baseline ratings,

by individuals who are familiar with the student being assessed. Following the baseline ratings, routines are selected for performance assessment. Corresponding skills related to completion of the routine are also selected. Skill areas include expressive communication, receptive communi-cation, problem solving, teamwork/social skills, motor skills, and functional academics. These are subsequently broken down from basic to com-plex. All selections in this step are made on the basis of IEP goals

broken down from basic to com-plex. All selections in this step are made on the basis of IEP goals and objectives developed by the educational team. The criterion for selection is that if completed, these skills will lead to increased independence by the student. Data are collected via direct observation on these routines and skills and are charted in the student booklets included with the Program Manual.

Instruction Phase  This phase includes a variety of instructional strategies that can be utilized by educators to instruct students on independence of routines selected in the assessment phase. Routines are typically taught in inclusive settings, with transi-tion routines integrated between routines from other domains. That is, when a routine in the classroom involves an academic task, then a tran-sition to group instruction, the educator strings these three routines (academic, transition,

tran-sition to group instruction, the educator strings these three routines (academic, transition, social) together. Taken as a whole, increasing indepen-dence on these routines allows the student to be better able to navigate a typical environment with as little assistance as possible. This includes strategies of prompting and prompt fading to increase independent functioning. Instruction before the routine is executed (pre-routine instruction) and instruction within the routine follows.

the routine is executed (pre-routine instruction) and instruction within the routine follows. Location of this instruction is relevant to the individual’s ability to execute the skills in the natural environment. Steps described by the authors include priori-tizing instructional objectives, providing instruc-tion and assessing progress, and conducting performance assessment of routines following instruction. During the first step, educators choose teaching strategies to utilize with the student

instruction. During the first step, educators choose teaching strategies to utilize with the student with specific setup, and teaching suggestions are outlined in the Program Manual. Instructional strategies are grouped into categories such as cre-ating cues, creating pictures, fine and gross motor skills practice, modeling, picture storybook, role playing, social stories, tactile systems, and visual systems. Ongoing assessment occurs with direct observation data collection which indicates what

systems. Ongoing assessment occurs with direct observation data collection which indicates what strategies were used and what outcomes were achieved by the student. Assessments are conducted after several teaching sessions in a probe format. The final step involves a perfor-mance assessment of the student’s performance on the routine. This is the fourth assessment of the routines following instruction and ongoing performance assessment.

Evaluation Phase  This phase involves determining whether to con-tinue instruction or return to the assessment phase. The Program Manual provides guidelines for determining which decision to make. Continuing with the instruction phase is warranted if the stu-dent has not met the criteria of mastery in the instructional phase. There are several conditions that can be used to terminate current instruction. These involve mastery of the routines and meeting the instructional goals of the student’s

These involve mastery of the routines and meeting the instructional goals of the student’s individual-ized education plan that may not be at the level of independent functioning. That is, if a student has progressed by way of decreased dependence on teacher support, this may meet the goals set forth by the educational team. Finally, instruction may be discontinued in several instances, including student’s lack of progress and environmental lim-itations that do not support ongoing instruction.

Efficacy Information  There are no empirical studies to date that outline the efficacy of FACTER in educational settings, although the Program Manual references some unpublished research. The Program Manual does provide data that was collected during field testing of FACTER in the state of Oregon through the Department of Education. Interrater reliability and test-retest reliability were reported with high cor-relation coefficients reported for elementary and secondary levels. These were somewhat

high cor-relation coefficients reported for elementary and secondary levels. These were somewhat lower for secondary scores and ratings between teachers and assessment team raters. Concurrent validity was assessed with the Vineland Adaptive Behavior Scales – Interview Edition and correlations between teacher ratings on FACTER and actual student performance. Cor-relation coefficients in both cases were adequate.

Outcome Measurement  Outcomes on FACTER are assessed for each indi-vidual on the routines that are the target of instruc-tion. Assessments indicate level of independent performance. Please see the “Treatment Proce-dures” section for additional information on the assessment and evaluation procedures of FACTER.

Qualifications of Treatment Providers  FACTER is intended for use by special educators in a school setting, although no specific recom-mendations are made for individuals who may administer the FACTER or implement the teach-ing procedures. While the authors provide the necessary tools to utilize the curriculum, they do offer training and technical assistance to users.

Functional Assessment Screening Tool (FAST)  Robert H. LaRue Douglass Developmental Disabilities Center, Rutgers, The State University of New Jersey, New Brunswick, NJ, USA

Synonyms  FAST (functional assessment screening tool)  Description  The FAST is a type of indirect functional assess-ment method. It is comprised of a self-report checklist designed to identify whether maladap-tive behavior is maintained via attention and tan-gibles, escape, sensory stimulation, or pain attenuation. In addition to the checklist, the FAST is com-prised of two information sections: informant-client relationship and problem behavior infor-mation. The information-client

sections: informant-client relationship and problem behavior infor-mation. The information-client relationship sec-tion contains four questions regarding the informant-client relationship (e.g., relationship to the client, how often and in what situations they interact). The problem behavior information section contains eight questions regarding the topography, frequency, and severity of the target behavior. The checklist section contains 16 items. Each question is marked as either “yes,” “no,”

behavior. The checklist section contains 16 items. Each question is marked as either “yes,” “no,” or “not applicable.” Items endorsed with a “yes” are then categorized into one of four possible sources of reinforcers for problem behavior: attention/pre-ferred items (social positive reinforcement), escape (social negative reinforcement), sensory stimulation (automatic positive reinforcement), and pain attenuation (automatic negative rein-forcement). Behavioral function is inferred by calculating

attenuation (automatic negative rein-forcement). Behavioral function is inferred by calculating a summary score for the four possible maintaining variables. The FAST interview pro-cess is 10–15 min in length.

Historical Background  The FASTwas originally developed in 1995, as an adjunct to functional analysis procedures. The scale underwent several revisions before the most recent version, which was released in 2005. The initial scale included 34 items. After field-testing the FAST with over 300 individuals, the item pool was reduced to the present 16 items.

Psychometric Data  Psychometric data for the FAST are generally sparse. Zaja et al. (2010) evaluated and compared the psychometric properties of the Questions About Behavioral Function (QABF) scale (Matson and Vollmer 1995), the Functional Assessment for Multiple Causality (FACT) scale (Matson et al. 2003), and the FAST for the indirect assessment of self-injurious, stereotypic, and aggressive/destructive behavior. The FAST sub-scales generally showed the lowest inter-rater agreement with

behavior. The FAST sub-scales generally showed the lowest inter-rater agreement with correlations ranging from poor to good relative to the QABF and FACT. Zaja et al. also found that the FAST had unacceptably low internal consistency especially for the social attention and social escape subscales. The authors indicated that the weaker psychometrics proper-ties (reliability and validity) for the FAST were likely related to its length, limited response format (“yes”⁄“no”⁄“NA”), and restricted

FAST were likely related to its length, limited response format (“yes”⁄“no”⁄“NA”), and restricted range of sub-scales (4 instead of 5). The FAST was evaluated by Iwata et al. (2013) for reliability and validity. Interrater reliability was assessed for 196 problem behaviors through independent administration of the assessment to pairs of raters. The average item-by-item agree-ment between pairs of raters was 71.5%, with a range of 53.3% to 84.5%. The authors also com-pared the results of the

of raters was 71.5%, with a range of 53.3% to 84.5%. The authors also com-pared the results of the FAST to the results of 69 functional analyses. They concluded that the FAST predicted the primary function of challeng-ing behavior 63.8% of the time. The authors noted that, while the results are comparable to other indirect assessment tools, they are not an adequate substitute for functional analysis procedures.

Clinical Uses  The FAST is an indirect functional assessment procedure. The purpose of the instrument is to provide preliminary information regarding the cause (of function) of maladaptive behavior. The information gathered from the FASTcan be incor-porated into direct assessment methods. Given the questionable reliability of most indirect assess-ment measures (such as interviews and rating scales), it is often recommended that these methods be employed in conjunction with direct observation

it is often recommended that these methods be employed in conjunction with direct observation and/or functional analysis procedures and not as the sole means to determine behavioral function (Zarcone et al. 1991).

Functional Behavior-Based Cognitive-Behavioral Therapy for Obsessive-Compulsive Behavior in Children with ASD
 Tricia Vause1, Nicole Neil2 and Maurice Feldman1 1Department of Child and Youth Studies and Department of Applied Disability Studies, Brock University, St. Catharines, ON, Canada

2Faculty of Education, Western University, London, ON, Canada  Definition  Functional behavior-based cognitive-behavioral therapy (CBT) for obsessive-compulsive behavior (OCB) in the pediatric population is a blending of two disciplines: (a) CBT with cognitive, social, and linguistic adaptions tailored to the specific needs of children and youth with autism spectrum disorder (ASD) and (b) functional behavior assessment and intervention derived from applied behavior analysis (ABA) to address

behavior assessment and intervention derived from applied behavior analysis (ABA) to address perceived maintaining variables of target compulsions (e.g., positive social attention) that are beyond anxiety reduction. Working in combination, the two disciplines of CBT and ABA may allow for a more comprehensive treatment of overt and covert behaviors that comprise OCBs in children and youth with ASD.

Historical Background  In comparison to social-communicative chal-lenges characteristic of ASD (DSM-5; American Psychiatric Association 2013), research on restric-tive and repetitive behaviors (RRBs) is limited. Factor analytic studies reveal two broad subtypes, including lower-order RRBs (e.g., self-injury, echolalia, motor stereotypy) and higher-order RRBs (e.g., washing rituals, rigid routines, arranging, and ordering). This limited research is troubling given that these behaviors may have

arranging, and ordering). This limited research is troubling given that these behaviors may have negative effects on educational and social out-comes for individuals with ASD, are linked to increased parental stress, and often negatively impact family functioning (Boyd et al. 2012). Studies have used the Repetitive Behavior Scale-Revised (RBS-R; Bodfish et al. 1999) which is a 43-item parent report measure of RRB frequency and severity with good psychometric properties for individuals with ASD

measure of RRB frequency and severity with good psychometric properties for individuals with ASD and related disabilities. Studies reveal preliminary support for higher-order RRBs (compulsive, ritualistic, and insis-tence on sameness behaviors) in ASD loading on the same factor (Mirenda et al. 2010), with many higher-order behaviors (e.g., arranging and order-ing) showing topographic similarities to symp-toms that are characteristic of obsessive-compulsive disorder (OCD, DSM-5; APA 2013).

to symp-toms that are characteristic of obsessive-compulsive disorder (OCD, DSM-5; APA 2013). Studies acknowledge overlapping symptom pre-sentation in individuals with ASD and OCD, with common phenotypic and genetic factors in these disorders (Stone and Chen 2016). OCD is defined by the presence of persistent thoughts, urges, or images that elicit anxiety and the overt display of repetitive behaviors or mental acts (compulsions) that an individual feels the need to perform to mitigate anxiety or

or mental acts (compulsions) that an individual feels the need to perform to mitigate anxiety or in response to a rigid rule (APA 2013).

When conducting a diagnostic assessment of OCD in a child or youth with ASD, differentiating between higher-order repetitive behaviors related to ASD and symptoms that are characteristic of OCD can often be problematic. Given challenges in the ability to engage in expressive communica-tion with others as well as limited self-reflection and introspection, it may be difficult for children and youth with ASD to identify and describe their obsessions and compulsions that is an integral part of

with ASD to identify and describe their obsessions and compulsions that is an integral part of standardized assessments such as the Child Yale-Brown Obsessive-Compulsive Scale (CY-BOCS; Goodman et al. 1986). The CY-BOCS is a semi-structured interview com-prised of 10 items and is used to rate symptom severity on a five-point ordinal scale. This mea-sure has good psychometric properties for indi-viduals who are 6–17 years old and otherwise typically developing. However, assessment tools such as

who are 6–17 years old and otherwise typically developing. However, assessment tools such as the CY-BOCS (Goodman et al. 1986) are not specifically normed for children and youth with an ASD diagnosis. Also, different from OCD in typically developing individuals, research indicates that compulsive behaviors in ASD may or may not be strongly associated with obsessions, and strength of association may vary for any given compulsion (Ruzzano et al. 2015). Therefore, when customizing therapy to a

may vary for any given compulsion (Ruzzano et al. 2015). Therefore, when customizing therapy to a given individual, it is of utmost importance that, in addition to diagnostic assessment tools, consideration be given to other assessment methods such as func-tional behavior assessment in order to identify motivating factors and maintaining variables beyond anxiety reduction such as positive sensory stimulation (automatic reinforcement) and social attention from others (Kose et al. 2018; Neil and

stimulation (automatic reinforcement) and social attention from others (Kose et al. 2018; Neil and Sturmey 2014; Vause et al. 2018). Given the acknowledged difficulty in differentiating between OCD symptoms and higher-order RRBs, the term obsessive-compulsive behavior (OCB) has been used by researchers to represent both phenomena (e.g., Chok and Harper 2016; Vause et al. 2018). Given the early focus and popularity of using CBT to treat externalizing behaviors such as impulsivity, CBT for

focus and popularity of using CBT to treat externalizing behaviors such as impulsivity, CBT for internalizing issues such as anxiety is considered the “second generation for CBT” (Kendall and Choudhury 2003, p. 89). Although CBT consists of a multitude of compo-nents, keystone strategies typically involve (a) cognitive training with an emphasis on cogni-tive restructuring techniques; (b) using behavioral principles to foster skill development with use of reinforcement; and (c) exposure-based

behavioral principles to foster skill development with use of reinforcement; and (c) exposure-based strategies (Scarpa and Lorenzi 2013). Regarding pediatric anxiety and OCD, the two first-line treatments include CBT with exposure-based therapy and pharmacological treatment including selective serotonin reuptake inhibitors [SSRIs] (Rosa-Alcázar et al. 2015; Sánchez-Meca et al. 2014; Schwartz et al. 2019; Torp et al. 2015). With 18 studies that met their inclusion criteria, a meta-analysis

et al. 2019; Torp et al. 2015). With 18 studies that met their inclusion criteria, a meta-analysis conducted by Sánchez-Meca et al. (2014) for pediatric OCD examined the differential effi-cacy of treatments and showed a reduction in symptoms with a large effect size for CBT alone and CBT with pharmacological treatment, with effect sizes being significantly higher than phar-macological treatment alone. Regarding the pediatric ASD population, ran-domized controlled trials (RCTs) evaluating

alone. Regarding the pediatric ASD population, ran-domized controlled trials (RCTs) evaluating treat-ment of anxiety disorders in children and youth with ASD have established the efficacy of CBT with cognitive, linguistic, and ASD-specific adap-tations (e.g., social skills modules; Wood et al. 2009) to meet the needs of this population (Sukhodolsky et al. 2013). However, these studies focused on anxiety disorders (DSM-5; APA 2013), including a very small sampling of indi-viduals with a primary

anxiety disorders (DSM-5; APA 2013), including a very small sampling of indi-viduals with a primary diagnosis of OCD (which is now part of obsessive-compulsive and related disorders in DSM-5, APA 2013). Promisingly, in the last 15 years, there has been increased interest in evaluating psychosocial treatments for OCB in ASD. Limited research still exists regarding the use of pharmacological treatment such as SSRIs for anxiety disorders and OCD in the ASD popu-lation, and preliminary evidence

such as SSRIs for anxiety disorders and OCD in the ASD popu-lation, and preliminary evidence suggests possible side effects such as impulsivity (Postorino et al. 2017). The present summary will cover (i) the current state of knowledge on CBT interventions for OCB with an emphasis on adaptations for this unique population, (ii) behavior analytic interven-tions based on functional behavior assessment to address OCBs, and, finally, (iii) the blending of adapted CBT with function-based behavior

to address OCBs, and, finally, (iii) the blending of adapted CBT with function-based behavior assessment and behavior analytic components for children and youth with ASD. Future direc-tions will be discussed.

Current Knowledge  A series of CBTcase studies follow a general CBT protocol for pediatric OCD developed by March and Mulle (1998) and other CBT experts. The main ingredient is exposure and response preven-tion (E/RP), where a youth is exposed to the internal and external stimuli associated with anxiety and refrains from engaging in the compul-sion resulting in habituation in the presence of those stimuli. E/RP along with traditional compo-nents such as psychoeducation and “bossing back OCD,”

stimuli. E/RP along with traditional compo-nents such as psychoeducation and “bossing back OCD,” creating a hierarchy of least-to-most anxiety-provoking OCD symptoms, and teaching cognitive and behavioral skills were largely adapted from the work of March and Mulle. Tai-loring the treatment to children and youth with high-functioning ASD, a number of case studies (e.g., Elliott and Fitzsimons 2014; Lehmkuhl et al. 2008; Reaven and Hepburn 2003) demonstrated clinically significant reductions in

Lehmkuhl et al. 2008; Reaven and Hepburn 2003) demonstrated clinically significant reductions in reported symp-toms. Varied modifications were used to tailor treatment to each child or youth to meet his/her idiosyncratic needs. Specifically, emphasis was placed on adaptations such as increased use of visual stimuli, individualized story metaphors, self-monitoring of behavior, use of positive rein-forcement such as verbal praise, a simplified cog-nitive component, and increased parent involvement

such as verbal praise, a simplified cog-nitive component, and increased parent involvement (Kose et al. 2018). Two studies compared a standard CBT proto-col for OCBs in children and youth with and without ASD. One study used an open trial to compare standard group CBT for youth with OCD alone (n ¼ 23) versus OCD and ASD [n ¼ 15] (Farrell et al. 2012). Using the CY-BOCS (Goodman et al. 1986), the standard group CBT protocol showed that the protocol was equally effective for participants with and

group CBT protocol showed that the protocol was equally effective for participants with and without ASD. In contrast, using similar outcome mea-sures, a subsequent trial involving a case-controlled comparison (n’s ¼ 22) indicated that standard CBT treatment was less effective for youth with ASD and OCD in comparison to when OCD was the sole diagnosis (Murray et al. 2015). Treating both anxiety disorders and OCBs in children and youth with ASD suggests that several adaptations are likely

disorders and OCBs in children and youth with ASD suggests that several adaptations are likely necessary to maxi-mize CBT treatment success for this underserved population.

In addition to CBT studies, selected studies have used single-case experimental designs to illustrate the success of interventions based on behavior analytic principles to reduce OCBs in children and youth with ASD, including func-tional behavior assessment procedures. In these studies, all participants had a diagnosis of ASD with an accompanying intellectual disability (ID). Behavior analysis is predicated on the understand-ing of motivating factors and environmental con-tingencies that

is predicated on the understand-ing of motivating factors and environmental con-tingencies that maintain these learned behaviors. To date, a wealth of research provides empirical support for the use of functional behavior assess-ment methods to guide intervention decisions regarding behavior reduction and adaptive skill development in individuals with ASD and related disabilities (Hanley et al. 2003; Matson and Williams 2014; Mulligan et al. 2014). Although individuals with ASD may engage in

2003; Matson and Williams 2014; Mulligan et al. 2014). Although individuals with ASD may engage in compulsive behaviors to eliminate anxiety and distress, there may be additional factors operating such as a deprivation of attention from others (especially given challenges in social-communicative skills), seeking sensory stimulation to modulate arousal, or a need to escape an undesired task (Martin and Pear 2019; Vause et al. 2017). By assessing all possible variables that may be maintaining a

and Pear 2019; Vause et al. 2017). By assessing all possible variables that may be maintaining a par-ticular behavior, an individualized comprehensive treatment plan can be devised.

Regarding OCBs, a small number of studies have used a wide variety of antecedent and con-sequent interventions to treat compulsive behav-iors in children and youth with ASD and ID including ordering and arranging (e.g., Chok and Harper 2016; Rodriguez et al. 2012); rigid rou-tines (Rispoli et al. 2014); and throwing away non-trash stimuli (Kuhn et al. 2009). For example, in a study by Rodriguez et al. (2012), a functional analysis was employed for one ordering and arranging behavior in each of

al. (2012), a functional analysis was employed for one ordering and arranging behavior in each of three youth (13 to 15 years) with ASD and ID and revealed auto-matic positive (sensory) reinforcement as the maintaining variable. Intervention included access to competing stimuli combined with response blocking and, in one case, product extinction (returning furniture to its original posi-tion) that led to a reduction of OCBs to near-zero levels. In a different study, using a latency func-tional

led to a reduction of OCBs to near-zero levels. In a different study, using a latency func-tional analysis with heart rate monitoring, Chok and Harper (2016) indicated automatic positive reinforcement as the maintaining variable for arranging items in a 12-year-old female with ASD, febrile seizures, and limited communication skills. Using a multiple schedule design, a discrimination training procedure effectively addressed this compulsive behavior. Using the Chambless and Hollon (1998)

procedure effectively addressed this compulsive behavior. Using the Chambless and Hollon (1998) criterion for empir-ically supported treatment, based on four single-case research designs including six participants conducted by four independent research teams, Neil and Sturmey (2014) reported that behavior analysis and behavior modification met criteria for probably efficacious treatment for OCBs in chil-dren with ASD. Targeting a wide range of OCBs including need to touch rituals, symmetry and

in chil-dren with ASD. Targeting a wide range of OCBs including need to touch rituals, symmetry and exactness, repetitive questioning, and bathroom-related rituals, behavior analytic treatment included procedures such as functional communi-cation training, differential reinforcement, token economies, response blocking, fading, and extinction.

Overall, CBT case studies with varying adap-tions for children and youth with high-functioning ASD showed promising results in reducing OCBs, and nonrandomized group studies employing a standard CBT protocol showed mixed results. Single-case experimental designs evaluating assessment and treatment derived from ABA (including functional behavior assessment) have been successful in reducing OCBs in chil-dren and youth with ASD and ID. With increas-ingly rigorous research designs, the combination

chil-dren and youth with ASD and ID. With increas-ingly rigorous research designs, the combination of adapted CBT and ABA elements (e.g., positive reinforcement, functional communication train-ing) derived from functional behavior assessment methods has been explored.

A small number of case studies and single-case experimental designs have evaluated this com-bined approach (e.g., Boyd et al. 2013; Chok and Koesler 2014; Neil et al. 2017; Vause et al. 2014) with children and youth with ASD. With an emphasis on E/RP and behavior procedures, Boyd et al. (2013) attempted to lessen OCBs in 5- to 11-year-old children with ASD and ID. Using exposure trials and redirection to alternative tasks, Boyd and colleagues showed mixed results with some participants showing

to alternative tasks, Boyd and colleagues showed mixed results with some participants showing a marked change in duration and latency to engage in a respective OCB. In a study by Chok and Koesler (2014), a functional analysis was used with a 14-year-old male with ASD and severe ID for excessive cleaning behavior. In this case, functional analysis results showed differing measures of heart rate when access to wiping was allowed versus when it was restricted. It was reported that when E/RP with

access to wiping was allowed versus when it was restricted. It was reported that when E/RP with response blocking was implemented, rates of cleaning reduced to near-zero levels.

Using a multi-component CBT with inclusion of functional behavior assessment, a small pilot group design (Vause et al. 2017) tested a manualized group functional behavior-based CBT (Fb-CBT) entitled I Believe in Me, Not OCB! (Vause et al. 2013) with children with high-functioning ASD. This manual built on the work of March and Mulle (1998) and other CBT experts (Piacentini et al. 2007a). Fourteen chil-dren with ASD ranged in age from 8 to 12 years, with seven children randomly assigned to the

chil-dren with ASD ranged in age from 8 to 12 years, with seven children randomly assigned to the experimental condition and seven children to treatment as usual (TAU). Participants assigned to TAU continued with any services that they were currently accessing. Two primary outcome mea-sures including the RBS-R (Bodfish et al. 1999) and the five-item compulsion subscale of the CY-BOCS (Goodman et al. 1986) demonstrated that this multimodal Fb-CBT treatment (e.g., psychoeducation, cognitive and

al. 1986) demonstrated that this multimodal Fb-CBT treatment (e.g., psychoeducation, cognitive and behavioral skills training, and E/RP) with ABA components (including functional behavior assessment) signif-icantly decreased OCBs at posttreatment, and results were maintained at 5-month follow-up, with medium to large effect sizes.

Vause et al. (2018), the first known RCT to treat OCBs in children and youth with high-functioning ASD, included 37 children (7–13 years) who were randomly assigned to the experimental group (n ¼ 19) or TAU (n ¼ 18). For those in the treatment condition, based on the extent of interference and distress in the youth’s life and impact on family functioning, several OCBs were chosen and treated per participant over a 9-week period. Fb-CBT consisted of group-based activities, work in parent-child

participant over a 9-week period. Fb-CBT consisted of group-based activities, work in parent-child dyads, and parent coaching. Children were treated in small groups consisting of three or four children (with at least one parent) and two experienced therapists. Similar to CBT studies tailored to ASD, to maintain interest in the program, sustain attention, and foster comprehension skills, several adaptations were embedded including a predetermined program plan with frequent repeti-tion,

several adaptations were embedded including a predetermined program plan with frequent repeti-tion, presentation of material in various modalities (e.g., visual stimuli paired with auditory; 3D vs. 2D materials), incorporation of immediate and delayed reinforcers, inclusion of circumscribed interests, and hierarchically deter-mined social skills exercises (e.g., greetings with fellow participants which progressed to playing interactive games). The treatment program was comprised of two phases.

which progressed to playing interactive games). The treatment program was comprised of two phases. The first phase (2.5 sessions) involved psychoeducation and mapping of all OCBs. This general phase focused on rapport building, psychoeducation about “OCB,” operationally defining compulsions (and related obsessions when present) as well as triggers, using a fear thermometer to visually map out compulsions and determine a child’s perceived control in resisting OCB (or performance of the

out compulsions and determine a child’s perceived control in resisting OCB (or performance of the compul-sion), and creating externalizing statements (e.g., “Buzz off, OCB!”). Extending beyond discussing OCBs, similar to Reaven and Hepburn (2003), various concepts were introduced such as interfer-ence caused by obsessions and performing com-pulsions, and how these behaviors may impact the quality of life for the youth and his/her family members. Following this general framework, in session 3,

of life for the youth and his/her family members. Following this general framework, in session 3, individualized work began for each compulsion in a graded fashion or based on a least-to-most hierarchy (March and Mulle 1998). Beginning in session 3, behavior analytic-based individualized treatment for each OCB was initiated with a func-tional behavior assessment to identify singular and multiple perceived functions of the targeted compulsive behaviors. For each OCB, an indirect assessment

perceived functions of the targeted compulsive behaviors. For each OCB, an indirect assessment called the Questions About Behavior Function (QABF; Matson and Vollmer 1995) was used. The QABF is a parent rating questionnaire that shows good psychometric properties for the ASD population (Matson et al. 2012) and attempts to address functions including attention, nonso-cial, tangible, and escape as well as physical pain/ discomfort as an antecedent event. This assess-ment measure was supplemented

well as physical pain/ discomfort as an antecedent event. This assess-ment measure was supplemented with descriptive data conducted by a researcher trained in behavior analysis to analyze antecedents and consequences of perceived functions pertaining to each OCB. Using these assessment methods in combination, a function-based assessment and intervention plan (FBAI) was derived to accompany the CBT approach. The FBAI helped to identify alternative replacement skills that served the same function

approach. The FBAI helped to identify alternative replacement skills that served the same function as the OCB. For example, consider an identified perceived function (beyond anxiety reduction) of “needing to tell” on siblings as social attention. In replacement of attending to the “need to tell” behavior, a parent was coached to minimize con-versation around the telling behavior and to teach alternative behaviors such as conversational skills with prompts, social stories, or social script

alternative behaviors such as conversational skills with prompts, social stories, or social script fad-ing. Throughout this phase, participants learned key behavioral skills (e.g., functional communi-cation, relaxation) that were appropriate to the targeted OCB and could also be generalized to other compulsions and different settings. Cogni-tive training existed on a spectrum where cogni-tive restructuring was attempted with a variety of modalities (e.g., verbally reframing thoughts, gathering

was attempted with a variety of modalities (e.g., verbally reframing thoughts, gathering facts, using visual representations to explain concepts) but like previous research (e.g., Lehmkuhl et al. 2008) was modified as needed based on the cognitive, linguistic, and interpersonal needs of the child. If there was an absence of a thought/obsession, focus was on simplified statements such as “I’m OK” or “I can beat this” (with engagement in an alternative behavior such as choosing a preferred activity

“I can beat this” (with engagement in an alternative behavior such as choosing a preferred activity or engaging in social conversation). Utilization of CBT skills training was encouraged when engag-ing in graded E/RP both in session and at home with positive reinforcement such as verbal praise and tangibles. Each of the nine sessions consisted of 30 min of parent coaching where parents learned the key concepts and procedures. Follow-ing parent coaching, they attempted to work with their child

key concepts and procedures. Follow-ing parent coaching, they attempted to work with their child as independently as possible, with a therapist present to assist as needed.

Regarding general outcomes for this RCTeval-uating the Fb-CBT treatment package for children and youth, the two primary outcome measures including the RBS (Bodfish et al. 1999) and the CY-BOCS compulsion subscale (Goodman et al. 1986) showed statistically significant differences between the experimental group and TAU with large effect sizes, and these results were maintained at 6 months (Vause et al. 2018). Of note is that multiple OCBs were treated for each child ranging from 3 to 9 compulsions

2018). Of note is that multiple OCBs were treated for each child ranging from 3 to 9 compulsions (M ¼ 6). Secondary measures also examined level of func-tional impairment (e.g., Child Obsessive-Compulsive Impact Scale-Revised; Piacentini et al. 2007b) with the experimental group faring significantly better than TAU, and parents were generally satisfied with the treatment which sup-ports the social validity of Fb-CBT. The summarized literature demonstrates that using adapted CBTshows promise in

validity of Fb-CBT. The summarized literature demonstrates that using adapted CBTshows promise in successfully treating OCBs in children and youth with ASD. Combining adapted CBT with the discipline of ABA and, specifically, inclusion of functional behavior assessment may provide a more compre-hensive clinical picture that aids in maximizing the reduction of OCBs and improving quality of life for individuals and their families.

Future Directions  Regarding assessment and treatment of OCBs in children and youth with ASD, there are several areas that require further attention and explora-tion. First, standardized assessment tools that are normed for an ASD pediatric population need to be developed. Whether used diagnostically or as a means of determining severity and interference of OCBs, given the acknowledged lack of introspec-tion and often limited vocal communication in children and youth with ASD, future research

and often limited vocal communication in children and youth with ASD, future research may examine simplifying existing standardized interviews or combining interview questions with direct and/or self-observation, where possible. In the RCT study (Vause et al. 2018), an indi-rect assessment with analysis of descriptive obser-vational (antecedent-behavior-consequence) data was collectively used to determine perceived functions of OCBs. Through experimental manip-ulation of variables, functional

determine perceived functions of OCBs. Through experimental manip-ulation of variables, functional analysis targets behavioral functions (Cooper et al. 2019). However, when treating multiple OCBs, it may be impractical to conduct multiple functional ana-lyses per participant, and given the covert nature

**Individualized Transition Plan (ITP)** *   Individuals with Disabilities Education Act (IDEA) *   Transition Planning *   Transitional Living  **Health Disparities** Synonyms *   Health inequalities; Health inequity Definition *   Differences in health status between different population groups. Some health disparities may be attributable to biological variations or free choice. Others may be attributable to environmen-tal conditions beyond the control of individuals concerned. In these

be attributable to environmen-tal conditions beyond the control of individuals concerned. In these instances, the uneven distribution of health may be considered unneces-sary, avoidable, unjust, and unfair. Outside of the USA, such disparities are typically referred to as health inequalities or inequities.

**Health Inequalities** *   Health Disparities  **Health Inequity** *   Health Disparities  **Healthcare Transition for Individuals with Autism** Definition *   Healthcare transition for individuals with ASD is defined as the transition from pediatric to adult healthcare systems.

Historical Background *   The access to and provision of quality healthcare for individuals with disabilities including autism spectrum disorder (ASD) has been identified as a significant public health issue (Bruder et al. 2012). During the period of transition from pediatric care to adult healthcare for young adults with ASD, the gap in access to high-quality patient-centered care widens further (Cooley 2013; Lotstein et al. 2008). Transition age is generally defined as occur-ring between the

(Cooley 2013; Lotstein et al. 2008). Transition age is generally defined as occur-ring between the ages of 14 and 17 years, up to the age of 22 years (AAP et al. 2011). In addition, compared to youth with other disabilities, youth and young adults with ASD are more likely to require specialty care for common comorbidities such as epilepsy, gastrointestinal problems includ-ing inflammatory bowel disease (IBD), and anxiety and depression, as well as respiratory, food, and skin allergies (AAP et al.

(IBD), and anxiety and depression, as well as respiratory, food, and skin allergies (AAP et al. 2011). Many obstacles can interfere with a smooth healthcare transition for TAY with ASD. The possible roadblocks include the attitudes of stakeholders; age limits in pediatric practices; complexity of health conditions; lack of insurance reimbursement for management of medical com-plexity often associated with transition age youth (TAY) with ASD; and, most importantly, the scar-city of competent

with transition age youth (TAY) with ASD; and, most importantly, the scar-city of competent educated healthcare providers prepared to meet the needs of this ever-growing patient demographic (Oswald et al. 2013). Individuals with ASD have higher rates of healthcare utilization (Croen 2006; Kogan et al. 2008; Warfield and Gulley 2006; Liptak 2006), an increased burden of unmet healthcare needs (Newacheck and Kim 2005), and decreased satis-faction with the medical care received (Leslie and Martin

and Kim 2005), and decreased satis-faction with the medical care received (Leslie and Martin 2007; Souders 2002). These data further support the imperative for improvement in access to quality healthcare services for individuals with ASD across the life span and especially during the period of transition from pediatric to adult healthcare (Iannuzzi et al. 2018). Many medical comorbidities can first present during the adolescent years, adding to the challenges of meeting the med-ical needs of

first present during the adolescent years, adding to the challenges of meeting the med-ical needs of this patient population (Bauman 2010). In addition, access to developmentally appropri-ate quality healthcare for TAY with ASD is extremely limited due to a critical shortage of pri-mary care providers, including physicians and advanced practice nurses, willing to accept TAY with ASD into their adult primary care practices (Warfield et al. 2015). Studies addressing the scar-city of primary care

primary care practices (Warfield et al. 2015). Studies addressing the scar-city of primary care providers have suggested that the lack of providers for this population may be a result of the lack of content, including an experi-ential component, focused on the healthcare needs of individuals with ASD and other developmental disabilities within health professional education pro-grams (Bruder et al. 2012; Patel and O’Hare 2010).

Current Knowledge *   Many TAY with ASD present with complex medical, behavioral, and sensory processing chal-lenges. For example, some studies have described a prevalence of up to 80% for sleep disorders in individuals with ASD, as compared to the rate of 30% for individuals without ASD (Bauman 2010; Malow et al. 2012). Seizure disorders can occur in up to 35% of individuals with ASD, and about 60% of patients with ASD have abnormal electro-encephalograms (EEGs) (Bauman 2010). The true

about 60% of patients with ASD have abnormal electro-encephalograms (EEGs) (Bauman 2010). The true prevalence of gastrointestinal disorders (GI) in individuals with ASD is not known; however, current estimates range anywhere from 9% to 70% (Buie et al. 2010). Individuals with ASD can also have a hyper-sensitivity to auditory, visual, and tactile stimuli. These sensory challenges can be especially diffi-cult to manage in a medical setting, where an individual may be exposed to novel smells,

diffi-cult to manage in a medical setting, where an individual may be exposed to novel smells, sounds, lighting, and medical staff that are unfa-miliar (Scarpinato et al. 2010). Many individuals with ASD, including TAY, can have difficulties in overly stimulating environments like the environ-ments found in most healthcare settings (Aylott 2010). These stimuli may result in hyper-arousal and maladaptive behavior, which can often be minimized by accommodating an individual’s sensory profile and any

behavior, which can often be minimized by accommodating an individual’s sensory profile and any specific sensory sensitiv-ity they may have. Having some understanding and appreciation of the significance of these sen-sory processing challenges before a medical pro-cedure or physical exam can greatly reduce the level of distress for the patient, caregiver, and providers.

*   A healthcare professional may misinterpret maladaptive behaviors and not understand that these maladaptive behaviors can be a manifest-ation of pain. This misunderstanding can lead to serious errors in assessment and treatment (Iannuzzi et al. 2014). Assessment of discomfort can be particularly difficult in nonverbal patients with autism; pain is often communicated through maladaptive behavior (Kopecky et al. 2013). It is critical for clinicians to specifically ask the individual with ASD or

(Kopecky et al. 2013). It is critical for clinicians to specifically ask the individual with ASD or their parent, guardian, or caretaker about sensory sensitivities and triggers, preferred communication methods, and, most importantly, how the individual communicates that they are in distress or pain. These are ques-tions that most clinicians are not trained to ask and can be crucial in assessment and the development of a treatment plan that is individualized to the unique comprehensive needs of

and the development of a treatment plan that is individualized to the unique comprehensive needs of an individual with ASD presenting for care. A clinician in the position of providing healthcare in either an emergent or primary care setting needs to understand that, at times, mal-adaptive behavior can also be a red flag, signaling the presence of an underlying medical issue. Lack of knowledge about the connection between aberrant behavior and pain is an issue that can lead to misdiagnosis and

the connection between aberrant behavior and pain is an issue that can lead to misdiagnosis and suboptimal medical care (Buie et al. 2010). Likewise, self-injurious or aggressive behavior exhibited by an individual with autism presenting for emergent care may represent an underlying medical issue. Thus, it is incumbent upon primary care and emergency cli-nicians to first investigate the possibility of an underlying medical condition that may explain aberrant behaviors (Iannuzzi et al. 2014).

of an underlying medical condition that may explain aberrant behaviors (Iannuzzi et al. 2014). This is especially true for nonverbal individuals whose only means of communicating physical pain or distress is to exhibit maladaptive behaviors.

Future Directions *   The current healthcare workforce, including phy-sicians and advanced practice nurses, is simply not equipped or prepared to meet the medical needs of adults with ASD (McDougle 2013). The need for a clinically competent healthcare workforce that is able to meet the healthcare needs of TAY with ASD will continue to increase as more young adults with ASD age out of pedi-atric healthcare practices. In order for healthcare professionals to develop competencies, a curricu-lum

healthcare practices. In order for healthcare professionals to develop competencies, a curricu-lum that is focused on the unique care needs of this patient population must be embedded into existing healthcare professional educational pro-grams. Since individuals with ASD are growing older, are living longer, and develop many of the health issues and concerns of the typical aging population, their medical needs will increase in scope and severity (Drum et al. 2009; Henry et al. 2011; Smith et

medical needs will increase in scope and severity (Drum et al. 2009; Henry et al. 2011; Smith et al. 2010). Because individuals with ASD across the life span can present in any healthcare setting, all healthcare providers, need to be prepared to meet the healthcare needs of this growing patient population (Smeltzer et al. 2014).

**Hearing** Synonyms *   Audition Definition *   Hearing is one of our five senses. The ability to hear is contingent upon the ability to perceive vibrations in air molecules that enter the auditory system through the outer ear. This energy is trans-mitted through the middle ear and inner ear, end-ing in the temporal lobe of the brain where it is ultimately perceived. The ability to hear is a crit-ical component to the reception and comprehen-sion of speech. Individuals with autism spectrum

crit-ical component to the reception and comprehen-sion of speech. Individuals with autism spectrum disorders can have impairment in their ability to hear, but more systematic research needs to be completed regarding hearing sensitivity in this population.

**Hearing Sensitivity** *   Auditory Acuity  **Hearing System** *   Auditory System  **Hearing Threshold** *   Auditory Acuity  **Heart Rate Variability (HRV)** *   Physiological Measures of Parental Stress  **Heart-Hand Syndrome** *   Timothy Syndrome  **Heller, Theodore** Name and Degrees *   Theodor Heller, Ph.D. Landmark Clinical, Scientific, and Professional Contributions *   Heller was a founding figure in special education. He also first described a disorder he termed dementia infantilis,

figure in special education. He also first described a disorder he termed dementia infantilis, currently called childhood disintegrative disorder. In addition, he formed an institute for the treatment and education of chil-dren with special needs with international draw.

Short Biography *   Theodor Heller was born June 9, 1869, in Vienna, Austria. His father, Simon Heller, was the director of an institute for the blind, and Heller spent much of his childhood at the institute. During school, he worked as a reader for blind people, including the philosopher Hitschmann, and through this became interested in philosophy. He went to Uni-versity of Leipzig to study under Wilhelm Wundt, an important figure in modern psychology. Heller’s area of concentration was the

Wilhelm Wundt, an important figure in modern psychology. Heller’s area of concentration was the psychology of blindness, and his thesis, Studien zur Blinden-Psychologie, was submitted in 1894. He also explored a number of other topics including the psychology of acoustic and haptic perception. During this time, he attended lectures on medicine and the brain also and became very interested in the education of children with intellectual and developmental disabilities (special education). Shortly

education of children with intellectual and developmental disabilities (special education). Shortly afterward, he started an institute for handicapped children together with his father and Richard Freiherr von Krafft-Ebing (a psychiatrist and author of Psychopathia Sexualis) at a property he had inherited at Grinzing in the Döbling district of Vienna. The institute started with two children as patients, but would ultimately serve 40 children at a time, many from outside of Austria. Many of the

but would ultimately serve 40 children at a time, many from outside of Austria. Many of the chil-dren came from wealthy families, but Heller used the proceeds to fund places for children from less privileged backgrounds. The institute included individualized treatment as well as social and academic education.

*   Heller was a pioneer of special education. He published works on the topic, including Grundriß der Heilpädagogik (Groundwork for Special Edu-cation) in 1904, Pädagogische Therapie (Educational Therapy) in 1914, and Die Heilpädagogik in der Gegenwart und Zukunft (Special Education in the Present and Future) in 1922. Heller also wrote about children who underwent a sudden and catastrophic regression of their adaptive function, including sociability and language, coupled with the onset of

of their adaptive function, including sociability and language, coupled with the onset of stereo-typed behaviors (all defining characteristics of autism) after a period of normal development. He termed this dementia infantilis, and its essen-tial features are captured by the current diagnostic concept childhood disintegrative disorder, despite radical shifts in diagnostic frameworks and treat-ment approaches, marking the clarity of Heller’s observation. In his first publication on the topic, Über

approaches, marking the clarity of Heller’s observation. In his first publication on the topic, Über Dementia Infantilis: Verblödungsprozess im Kindesalter (On Dementia Infantilis: Mental Regression in Childhood) in 1908, Heller described six cases he had seen in Vienna, referred from as far away as Turkey (Heller 1908). The children had all been developing normally until their third or fourth year of life, and then had dramatic losses, ultimately ending up with little or no language, and

year of life, and then had dramatic losses, ultimately ending up with little or no language, and strange stereotypies of behav-ior. One of Heller’s case descriptions is excerpted below to illustrate the period of regression: At the end of his third year of life he developed states of anxiety. He didn’t want to stay in a dark room. He was afraid when he was left alone. He often cried without cause. Later his intelligence decreased rapidly. He wasn’t interested in games he had previously enjoyed

Later his intelligence decreased rapidly. He wasn’t interested in games he had previously enjoyed and no longer under-stood them. He made strange movements and held strange postures. He played with his saliva. His speech became worse and worse.

*   Although the term autism was used to describe the inward turning aspect of schizophrenia by Bleuler, a contemporary of Heller’s, around the same time that Heller was writing about these cases, it was not until many years later that Kanner and Asperger would use the term to describe the combination of social disabilities and repetitive behaviors. However, Heller’s vivid descriptions of dementia infantilis are without question also descriptions of autism. Heller led an extremely productive

infantilis are without question also descriptions of autism. Heller led an extremely productive life. He founded organizations (Society for Special Education, Society for Pedi-atric Research, Austrian Society for Special Edu-cation), contributed significantly to other organizations (International Society for Special Education), and served as an editor (Journal of Child Research). Heller gave his last public speech during March of 1938. Later that month, as a Jew, he was removed from his position

public speech during March of 1938. Later that month, as a Jew, he was removed from his position as head of the institute by the Nazis. His temporary replacement was a butcher. In May, Heller attempted suicide. He died on December 12, 1938, as a result. The following year, his wife and daughter were taken to Riga and killed by the Nazis. His institute was disbanded in 1941.

**HELSNF1** *   CHD8  **Hemifacial Microsomia** *   Goldenhar Syndrome  **Hemispheric Dominance** *   Dominance, Cerebral  **Hemispheric Lateralization** *   Dominance, Cerebral  **Hemispheric Specialization** *   Dominance, Cerebral  **Hendrick Hudson Central School District v. Rowley (Provision of What Is an Appropriate Program)**

Definition *   Bd. of Educ. of Hendrick Hudson Cent. Sch. Dist. v. Rowley  In General *   In this case, the United States Supreme Court declared that the “free appropriate public educa-tion” (FAPE) requirement in the Education for All Handicapped Children Act (EAHCA) – the Individuals with Disabilities Education Act’s (IDEA) predecessor statute – required school districts merely to provide all disabled students with educational benefits rather than to maxi-mize each disabled student’s potential.

students with educational benefits rather than to maxi-mize each disabled student’s potential. The plaintiffs, parents of a hearing-impaired student, brought suit against the defendant school district alleging that its refusal to provide their daughter with a sign language interpreter constituted a denial of FAPE. Noting the student’s successful completion of her grade level, the Court sided with the school district by finding the FAPE requirement satisfied regardless of whether she may have

with the school district by finding the FAPE requirement satisfied regardless of whether she may have performed better with access to a sign language interpreter. In reaching this conclusion, the Court found that the Act neither expressly defined FAPE, nor imposed upon the states any substantive standard prescribing the level of education to be accorded to disabled children. The Court thus prescribed a flexible two-part inquiry for examining educa-tional programs, whereby courts should ask: (1)

a flexible two-part inquiry for examining educa-tional programs, whereby courts should ask: (1) whether the state complied with the proce-dures set forth in the IDEA and (2) whether the student’s individualized educational program (IEP) was reasonably calculated to enable the child to receive educational benefits. Pursuant to this decision, a disabled student’s education must merely provide the student with some meaningful benefit rather than providing the best education possible. Thus, school

student with some meaningful benefit rather than providing the best education possible. Thus, school districts must provide only a “basic floor of opportunity” to children with disabilities, even when it is arguable that students could perform better if granted additional services.

Implications for ASD Students *   Autism spectrum disorders were added to the IDEA’s list of disabilities in 1991. Since then, however, much debate surrounds the issue of defining FAPE for ASD students. The low thresh-old announced in Rowley made it difficult for parents to prove that their ASD student’s IEP is inadequate. The preferred early intervention pro-grams for ASD students, such as applied behav-ioral analysis (ABA), are very costly and require trained personnel. District programs are

behav-ioral analysis (ABA), are very costly and require trained personnel. District programs are often-times school-based and do not provide the student with the one-on-one attention that some experts believe is necessary for ASD treatment. Some critics argue that the “equal floor of opportunity” requirement is too vague, particularly in light of the broad spectrum of autism disorders and the wide variety of treatment options for ASD.

Litigation Strategies *   It is important to note that there is much room for disagreement with respect to defining appropriate educational programs for ASD students. These disagreements pose problems for parents and pro-fessionals attempting to prove that an ASD stu-dent’s IEP is inadequate under the IDEA. In addition, parents must be aware before challeng-ing their child’s IEP that IDEA litigation is expen-sive. Although victorious parents may sometimes collect attorneys’ fees, they are

is expen-sive. Although victorious parents may sometimes collect attorneys’ fees, they are unlikely to recover such fees if they reach a settlement agreement before trial. Since 2007, though, parents have a recognized right to bring suit under the IDEA directly, without legal representation, which helps reduce the costs associated with such litigation.

**Heritage Language Use for Intervention in Autism** Definition *   Heritage languages are those languages that are specific to an ethnic or racial group. For instance, the heritage language of a Chinese person might be Mandarin. An individual’s heritage language may be different from the majority language (i.e., the language that is spoken by most people in a region), like in the case of a Chinese person living in the United States. For individuals with autism spectrum disorder (ASD) whose

person living in the United States. For individuals with autism spectrum disorder (ASD) whose families might speak a heritage language that is different from the majority language, heritage language usage during intervention might look like (a) delivering the entire intervention in the heritage language, (b) providing verbalizations in the heritage lan-guage, or (c) teaching using heritage and majority languages.

Historical Background *   Because a core characteristic of ASD is the impairment of language abilities, some parents and practitioners believed that exposure to more than one language could exacerbate the already impaired language development of children with ASD (Hampton et al. 2017; Kay-Raining Bird et al. 2012; Kremer-Sadlik 2005; Ohashi et al. 2012). As Lim et al. (2018) pointed out, the argu-ments against dual-language exposure mirror those that surrounded the use of augmentative and

argu-ments against dual-language exposure mirror those that surrounded the use of augmentative and alternative communication (AAC), which is now widely used to help children with ASD com-municate. Studies that have compared the lan-guage abilities of bilingual and monolingual children with ASD have found no detrimental effects of bilingual exposure (Dai et al. 2018; Gonzalez-Barrero and Nadig 2017; Lund et al. 2017; Zhou et al. 2017). In particular, Dai et al. (2018) compared the expressive and

Lund et al. 2017; Zhou et al. 2017). In particular, Dai et al. (2018) compared the expressive and receptive language abilities of bilingually exposed to mono-lingually exposed children with ASD before they received any intervention. Results demonstrated that there were no detrimental effects of bilingual exposure, even when cognitive functioning and socioeconomic status were controlled for. Addi-tionally, some studies even suggest that bilingual children with ASD might have an advantage over

some studies even suggest that bilingual children with ASD might have an advantage over monolingual children with ASD in terms of vocabulary size (Gonzalez-Barrero and Nadig 2017) and early social communication skills like gesturing (Valicenti-McDermott et al. 2013; Zhou et al. 2017). Overall, it would seem that learning more than one language does not negatively impact the language development of children with ASD.

Current Knowledge *   Because research regarding the effects of dual-language exposure in children with ASD is rela-tively new, few studies have investigated the effects heritage language use in interventions for individuals with ASD. Seung et al. (2006) reported on a case study whereby a Korean-American preschooler with ASD received speech-language intervention entirely in Korean, then bilingually in Korean and English, and finally entirely in English. Results indicated that conducting

in Korean and English, and finally entirely in English. Results indicated that conducting speech-language intervention in Korean, the participant’s heritage language, helped to facilitate the participant’s acquisition of English, the majority language. Specifically, authors noted that the participant acquired new English words as his Korean vocabulary increased. In terms of providing verbalizations in heritage languages, preference assessments suggest that children with ASD may prefer listening

in heritage languages, preference assessments suggest that children with ASD may prefer listening to verbalizations such as praise in their primary home language, which may be the heritage or majority language depending on the household (Aguilar et al. 2016, 2017). Bilingually exposed children with ASD’s language preferences may also depend on task difficulty levels such that they prefer their primary home language as tasks become more challenging (Aguilar et al. 2016). Additionally, the

primary home language as tasks become more challenging (Aguilar et al. 2016). Additionally, the language that verbalizations are delivered in may also affect children with ASD’s engagement in play behaviors (Lim and Charlop 2018). Specifically, children with ASD may dem-onstrate more play behaviors when play partners deliver verbalizations like instructions, com-ments, and praise in their heritage languages.

*   A recent meta-analysis of studies comparing the effects of teaching children with neurodeve-lopmental disorders in the heritage language ver-sus the majority language identified five studies that included participants with ASD (Lim et al. 2019). One study did not disaggregate the data of participants with ASD from those with intellectual disability (Durán and Heiry 1986). Thus, the spe-cific effects of providing verbal prompts in English versus Spanish on the vocational skills of adults with

of providing verbal prompts in English versus Spanish on the vocational skills of adults with ASD are unclear. Of the remaining four studies, one study found that conducting discrete trial training in the participant’s heritage language, Spanish, led to increased accuracy and decreased instances of challenging behaviors as compared to the majority language (Lang et al. 2011). The other three studies found no effects of language of instruction in the context of func-tional communication training

found no effects of language of instruction in the context of func-tional communication training (Dalmau et al. 2011), tact training (León 2016), and pivotal response training (Vaughn 2014). Functional communication training in Spanish and English were equally effective at decreasing challenging behaviors and increasing task completion and requests for reinforcement (Dalmau et al. 2011). Conducting tact training in English and bilin-gually (i.e., English and Spanish) had similar effects on

tact training in English and bilin-gually (i.e., English and Spanish) had similar effects on correct responding (León 2016). Pivotal response training in Spanish and English had comparable effects on participants’ conversation skills (Vaughn 2014). In sum, the current literature indicates that (a) delivering speech-language intervention in the heritage language of a child with ASD might facilitate the acquisition of the majority language, (b) children with ASD from bilingual households might

the acquisition of the majority language, (b) children with ASD from bilingual households might demonstrate preferences for their primary home language and engage in more play behav-iors when verbalizations are provided in their heritage languages, and (c) heritage and majority language-based treatments may be equally effective.

Future Directions *   In general, more studies investigating the effects of using heritage languages during interventions for children with ASD are needed. With prefer-ence assessments indicating that bilingual chil-dren with ASD might prefer their primary home languages, researchers may want to pay special attention to reporting the amount of exposure that participants have with heritage and majority languages within their homes. A challenge for those conducting research in this area may be

languages within their homes. A challenge for those conducting research in this area may be finding interventionists who are fluent in partic-ipants’ heritage languages. Because heritage lan-guages are most often spoken within the context of family, researchers may want to look at train-ing parents or siblings of children with ASD to deliver interventions in their heritage languages. Nonetheless, if the family member is not fluent in the majority language, then the same challenge of finding a

if the family member is not fluent in the majority language, then the same challenge of finding a trainer who speaks the heritage lan-guage will be present. Thus, another area for future research may be investigating how train-ing can be conducted in the presence of language barriers.

**HFDT** *   Human Figure Drawing Tests  **Higher Education Opportunity Act of 2008 (HEOA)** Definition *   In 2008, Congress reauthorized the Higher Edu-cation Act as the Higher Education Opportunity Act (HEOA). This reauthorization brought about major changes to the eligibility requirements under Title IV which is the title that governs the Federal Student Aid (FSA). Now students with intellectual disabilities (ID) and developmental disabilities (DD) including some students on the autism

disabilities (ID) and developmental disabilities (DD) including some students on the autism spectrum may have an opportunity to attend postsecondary education as a result of these amendments and receive some limited forms of Federal Student Aid. This piece of legis-lation creates an avenue through which more stu-dents with autism spectrum disorders and other developmental disabilities can attend college. The Higher Education Opportunity Act (HEOA) allows Institutions of Higher Education (IHE)

college. The Higher Education Opportunity Act (HEOA) allows Institutions of Higher Education (IHE) that already are approved to distribute Federal Student Aid under Title IV to apply to the US Department of Education (DOE) for approval of a comprehensive transition and post-secondary program (CTP). Colleges and univer-sities would need to design a curriculum and advising structure specifically geared toward meeting the needs of students with intellectual disabilities. At least 51% of the

geared toward meeting the needs of students with intellectual disabilities. At least 51% of the students with ID’s time would need to be spent with non-disabled peers. If the US DOE approved a col-lege’s CTP, then the student with an intellectual disability would be limited to only some forms of Federal Student Aid, namely, Federal Pell Grants, Federal Supplemental Educational Opportunity Grants (FSEOG), and Federal Work-Study monies. Although the student with ID enrolled in a US DOE-approved

(FSEOG), and Federal Work-Study monies. Although the student with ID enrolled in a US DOE-approved CTP does not have to pay back these grants, it does limit their ability to pay the high costs of post-secondary education. The bulk of Federal Stu-dent Aid is in the form of guaranteed student loans that are both subsidized and unsubsidized by the government.

*   An eligible student with an intellectual dis-ability (ID) is defined in Section 760 of the HEOA (with slight modifications) and includes a student (A) with mental retardation or signifi-cant cognitive impairment and (B) who is/was eligible for FAPE under IDEA including stu-dents who were private and/or homeschooled. The student must be enrolled in an approved CTP and must meet all of the general student eligibility requirements under Section 668.32 except:

*   Does not have to be enrolled for the purpose of obtaining a degree or certificate
    *   Is not required to have a high school diploma or have passed an ability-to-benefit test
    *   Must maintain satisfactory academic progress under school’s policy for students in the CTP (Bergeron et al. 2010.

The student must also have a documentation demonstrating that he or she has an intellectual disability or significant cognitive impairment which can also include individuals with autism spec-trum disorders (VanBergeijk and Cavanagh 2012). An eligible CTP must be offered by a college that already has an established financial aid pro-gram for its general student body. It also must be specifically designed to support students with intellectual disabilities (ID) and include an advis-ing and

designed to support students with intellectual disabilities (ID) and include an advis-ing and curriculum structure. The CTP must require students with ID to participate in courses and activities with students without disabilities. These activities can include vocational internships in addition to academic coursework (VanBergeijk and Cavanagh 2012). Students with ID and/or significant cognitive impairments including those students on the autism spectrum can complete the Free Application for

impairments including those students on the autism spectrum can complete the Free Application for Federal Student Aid (FAFSA) and receive aid pro-vided they are intending to enroll in a US DOE-approved CTP. The FAFSA form helps the college determine how much aid a student enrolled in a CTP is entitled to by calculating the Expected Family Contribution (EFC) (Finkel et al. 2010).

Historical Background *   The Higher Education Opportunity Act can trace its roots to the Higher Education Act of 1965 (P.L. 89–329). This act authorized most federal student financial aid programs, including the Fed-eral Supplemental Educational Opportunity Grant program and the guaranteed student loan program (FinAid 2016) (known as Title IV). At the time President Lyndon B. Johnson signed the act into law, the proportion of grants to loans is the mirror opposite of what they are today. In

act into law, the proportion of grants to loans is the mirror opposite of what they are today. In the 1960s, about 2/3 of the Federal Student Aid came in the form of grants. Now that proportion is inverted with 2/3 of today’s Federal Student Aid being given to students in the form of loans. Prior to the passage of HEOA, only students who were enrolled full time in a degree-bearing program were eligible for Federal Student Aid. Full-time students were able to complete the Free Application for

eligible for Federal Student Aid. Full-time students were able to complete the Free Application for Federal Student Aid (FAFSA). The student was eligible for both sub-sidized and unsubsidized guaranteed student loans as well as grants including Federal Pell Grants, Federal Supplemental Educational Oppor-tunity Grants (FSEOG), and Federal Work-Study program funds. The Congress was amending the act in the midst of the worst economic recession since the Great Depression. A driving force behind the

in the midst of the worst economic recession since the Great Depression. A driving force behind the recession was the provision of risky mortgage and business loans. Consequently, the Congress decided not to allow students with ID to be eligible. The thought was that the students with IDs’ debit to income ratio would be too high for them to be able to pay off the debt. Therefore, this population of students was per-ceived as being yet another risky loan prospect. Interestingly, Wehman (2001)

of students was per-ceived as being yet another risky loan prospect. Interestingly, Wehman (2001) found that students with disabilities who did complete a college degree were employed at a rate that was not sta-tistically different from their nondisabled peers. Many individuals on the autism spectrum have the capacity to complete college level work. It is their impairment in executive functioning, independent living, and social skills that make it difficult for them to complete a degree – not

independent living, and social skills that make it difficult for them to complete a degree – not their intellectual ability. This blanket policy of excluding this pop-ulation needs further examination.

Current Knowledge *   Although the HEOAwas passed in 2008, it was not until 2011 that the US DOE began taking applica-tions from Institutions of Higher Education (IHE) to have their comprehensive transition and post-secondary programs (CTP) approved to distribute Federal Student Aid. Despite the fact that there are over 7600 IHE that are authorized to dis-perse Federal Student Aid under Title IV, only about colleges have a US DOE-approved CTP. This repre-sents that less than of colleges and

IV, only about colleges have a US DOE-approved CTP. This repre-sents that less than of colleges and universities are serving this population through the CTP structure. The reasons for the slow adoption of the CTP model by our nation’s Institutions of Higher Edu-cation are unclear. The law was enacted with little fanfare considering this provides students with ID an entrée into postsecondary education. The actual implementation of the law took a number of years and appeared to be not well

education. The actual implementation of the law took a number of years and appeared to be not well coordinated. There were high administrative costs incurred by the universities to undertake the creation of a CTP with little economic incentive to commit the orga-nization’s resources. Perhaps, if the legislation had also included the provision of student loans to students with ID enrolled in a CTP, then more colleges of universities may have created these programs for students with ID. What we

then more colleges of universities may have created these programs for students with ID. What we know from current research is that postsecondary transition programs do make a dif-ference in the employment outcomes of students with intellectual disabilities. Moore and Schelling (2015) found that nine out of ten students who graduated from a postsecondary program were employed within 2 years of their study. This is in contrast to the finding from the National Longitu-dinal Transition Study-2 that

study. This is in contrast to the finding from the National Longitu-dinal Transition Study-2 that only about half of the students with intellectual disabilities were employed (as cited in Moore and Schelling 2015). Wehman et al. (2013) used postsecondary vocational training as an intervention in a random-ized clinical trial. His team’s finding was that 87.5% of the students on the autism spectrum who participated in the postsecondary vocational training were employed at the end of the study,

who participated in the postsecondary vocational training were employed at the end of the study, whereas the control group, which consisted of students working with their high school and their state office of Vocational Rehabilitation Services, had an employment rate of 6.5%.

Future Directions *   In order for the CTP model to gain traction, three things need to occur. First, research into the effi-cacy of this model in general needs to be conducted

play behaviors, such as independent play, cooper- ative play, and pretend play, improved through a video modeling intervention. Video modeling also improved the level of verbal and motor play response in children with autism (D’Ateno et al. 2003) and reciprocal play skills (Nikopoulos and Keenan 2004). Lastly, a few studies have used video modeling to reduce disruptive and challeng- ing behaviors (Shipley-Benamou et al. 2002; Buggey 2005).  SCLT is a core foundation of cognitive behav- ioral

(Shipley-Benamou et al. 2002; Buggey 2005).  SCLT is a core foundation of cognitive behav- ioral therapy (CBT). Interventions using CBT for individuals with autism (e.g., Chalfant et al. 2006; Reaven et al. 2009; Sofronoff et al. 2005; Wood et al. 2009) emphasize attention, motivation, self- reflection, self-regulation, and self-efficacy. In CBT, active participation by the child to develop and practice coping skills is key. Studies have shown CBT to be an effective intervention in reducing

practice coping skills is key. Studies have shown CBT to be an effective intervention in reducing anxiety in children with high- functioning autism and Asperger’s disorder (Chalfant et al. 2006; Reaven et al. 2009; Sofronoff et al. 2005; Wood et al. 2009).  A fundamental component of CBT with indi- viduals with autism is developing awareness and identification of emotion feelings in order to pro- mote greater self-regulation of behavior. Self- reflection and self-regulation are often challeng-

mote greater self-regulation of behavior. Self- reflection and self-regulation are often challeng- ing for individuals with autism; therefore, these are taught to participants in CBT by practicing the identification of cues of emotion (e.g., through body feelings), which is one method of self- reflection (Chalfant et al. 2006; Reaven et al. 2009; Wood et al. 2009). In addition, the interven- tions underscored teaching the connections between feelings and thoughts.  Another component of SCLT

underscored teaching the connections between feelings and thoughts.  Another component of SCLT utilized in CBT with individuals with autism is the promotion of self-efficacy. The work by Wood et al. (2009) targeted improving self-efficacy as a fundamental component of the CBT intervention. Wood et al. (2009) and Drahota et al. (2011) discussed the importance of improving self-care in individuals with autism in order to increase individuals’ mas- tery experiences and ultimately improve self-

with autism in order to increase individuals’ mas- tery experiences and ultimately improve self- efficacy. The focus on improving self-care is important because researchers have found adaptive skill deficits in individuals with autism (Rodrigue et al. 1991). As mentioned earlier, according to SCLT, one way of improving self- efficacy is through mastery experiences. CBT interventions also promote mastery experiences in feared situations. For example, Wood et al. (2009) and Reaven et al. (2009) used

experiences in feared situations. For example, Wood et al. (2009) and Reaven et al. (2009) used a hierarchy of feared situations where participants are rewarded as they try increasingly challenging (feared) situations. The use of a hierarchy allows the participants to start with less fearful situations and work their way up to more challenging feared situations, gaining confidence with small steps as they go. The successful achievement of the feared situations in vivo in CBT allows the

steps as they go. The successful achievement of the feared situations in vivo in CBT allows the participant to systematically confront and succeed in anxiety- provoking situations, which systematically increases the participants’ self-efficacy.  Future Directions  SCLT provides an informative framework for understanding human functioning and may have relevance to the impact of ASD symptoms on learning and adaptive behavior in individuals with autism. Video modeling and CBT are two interventions

and adaptive behavior in individuals with autism. Video modeling and CBT are two interventions that are influenced by SCLT in treating ASD symptoms, and each has evidence of efficacy. Future research with individuals with autism may consider incorporating SCLT princi- ples to inform interventions in order to improve skill learning and comprehension. By creating interventions that consider how deficits in autism impact symbolic representations, forethought, vicarious learning, self-reflection,

deficits in autism impact symbolic representations, forethought, vicarious learning, self-reflection, self-regulation, and self-efficacy, the interventions may be able to better achieve their goals and meet the needs of affected individuals.  Social Communication  Brynn Thomas The Neurodevelopmental Disabilities Laboratory, Laboratory for Understanding Neurodevelopment (FUN Lab), Northwestern, and the University of Notre Dame, Chicago, IL, USA  Synonyms Reciprocal communication  Definition Social

University of Notre Dame, Chicago, IL, USA  Synonyms Reciprocal communication  Definition Social communication is a broad term that describes the vast amount of verbal and non- verbal behaviors used to interact with other people. Examples of the verbal and nonverbal behaviors are (but are not limited to) speech, prosody, gestures, and facial expressions. These behaviors can be used to initiate or respond to joint attention, to share emotion with others, or to signal when an individual wants the

respond to joint attention, to share emotion with others, or to signal when an individual wants the attention of another person, along with many other uses.  A deficit in social communication is a diagnos- tic characteristic of children with ASD.  Social Communication and Interaction (SCI)  Social Communication Disorder  Social Communication Questionnaire  Anne Snow Child Study Center, Autism Program, Yale University, New Haven, CT, USA  Synonyms Autism screening questionnaire (ASQ); SCQ

Program, Yale University, New Haven, CT, USA  Synonyms Autism screening questionnaire (ASQ); SCQ  Description The Social Communication Questionnaire (SCQ), formerly known as the Autism Screening Ques- tionnaire (ASQ), is a screening measure that was developed to identify symptomology associated with autism spectrum disorder (ASD; Rutter et al. 2003a). It is widely recognized in the field as a recommended screening measure for ASD (Coonrod and Stone 2005; Hus and Lord 2011).  The SCQ contains 40

screening measure for ASD (Coonrod and Stone 2005; Hus and Lord 2011).  The SCQ contains 40 yes/no items that are completed by the parent or primary caregiver. It is applicable to individuals whose chronological age is over 4 years, provided that their mental age is over 2 years. A body of research is accumulat- ing that aims to determine the utility of the SCQ in young children, however (e.g., Corsello et al. 2003).  There are two versions of the SCQ. The Life- time version inquires about the

et al. 2003).  There are two versions of the SCQ. The Life- time version inquires about the individual’s entire developmental history, and the items in the Cur- rent version refer to the individual’s behavior in the most recent 3-month period. The Lifetime form should be used for diagnostic screening pur- poses, and the Current form is appropriate to use when the goal is to understand an individual’s current level of ASD symptomology, such as when evaluating treatment or educational plans.

current level of ASD symptomology, such as when evaluating treatment or educational plans.  Scoring of the SCQ results in a total score that is compared to a cutoff score developed from the Lifetime form. The total score is calculated by summing the item responses as indicated on the scoring form that is provided as part of the SCQ protocol. For each item, a score of 1 is given for abnormal behavior, and a score of 0 is given for its absence. All items are given equal weight in deter- mining

and a score of 0 is given for its absence. All items are given equal weight in deter- mining the total score. Different scoring proce- dures are used for verbal and nonverbal individuals. For verbal individuals, six items ask- ing about language abnormalities are included in the total score, whereas these items are disregarded for individuals who are nonverbal. A cutoff score of 15 or greater identifies individ- uals who are likely to have an ASD, indicating that more thorough evaluations are

individ- uals who are likely to have an ASD, indicating that more thorough evaluations are warranted. Subscores that correspond to the three symptom domains of ASD (social abnormalities, communi- cation abnormalities, and restricted, repetitive, and stereotyped behavior) can also be calculated. However, it must be noted that due to insufficient research on these subscores, they should be used for research purposes only (Rutter et al. 2003).  Historical Background The SCQ was originally developed

purposes only (Rutter et al. 2003).  Historical Background The SCQ was originally developed as a compan- ion to the Autism Diagnostic Interview-Revised (ADI-R; Rutter et al. 2003b). It was designed as a shorter version of the ADI-R, which is a 93-item structured interview. Items from the ADI-R with discriminative diagnostic validity were chosen for the SCQ. Selected items assess the three symptom domains of ASD: reciprocal social interaction, communication, and restricted, repetitive, and ste-

domains of ASD: reciprocal social interaction, communication, and restricted, repetitive, and ste- reotyped patterns of behavior. Items were also selected based on the extent to which the behavior in question was readily observable by the care- giver. The wording of the items was also modified to increase the clarity of the item for parents.  Psychometric Data Standardization data for the SCQ were collected from 200 individuals between the ages of 4–40 years (Berument et al. 1999). The sample

collected from 200 individuals between the ages of 4–40 years (Berument et al. 1999). The sample included 160 individuals with ASD and 40 with nonspectrum disorders. Validity of the SCQ was assessed by analyzing its factor structure, the abil- ity of SCQ items and total score to discriminate ASD and non-ASD groups, and correlating SCQ scores with those from the ADI-R. Factor analysis of the SCQ supported a four-factor structure consisting of the following factors: social interac- tion,

SCQ supported a four-factor structure consisting of the following factors: social interac- tion, communication, abnormal language, and ste- reotyped behavior. Item analyses indicated that 85% of the items differentiated between ASD and non-ASD individuals at a statistically signif- icant level. Similarly, total scores on the SCQ were significantly different between ASD and non-ASD groups. Examination of total scores indicated a cutoff score of 15 for discriminating ASD from non-ASD diagnoses. A

of total scores indicated a cutoff score of 15 for discriminating ASD from non-ASD diagnoses. A cutoff of 22 was suggested to distinguish between autism and other ASDs. Comparisons to the ADI-R revealed significant correlations between all domains of the two instruments as well as the total scores. Two additional studies support the concurrent validity of the SCQ and ADI-R. Both found good agreement between the SCQ and the ADI-R diagnostic categories but found lower agreement between the SCQ and

between the SCQ and the ADI-R diagnostic categories but found lower agreement between the SCQ and ADI-R at the item level (Rutter et al. 2003). In sum, the stan- dardization data supported the validity of the SCQ and suggested strong psychometric properties.  A subsequent study of the diagnostic validity of the SCQ examined its performance in a sample of 157 children (n ¼ 71 autism, n ¼ 49 ASD, n ¼ 37 non-ASD) (Corsello et al. 2003). Total mean scores between diagnostic groups were in the

n ¼ 37 non-ASD) (Corsello et al. 2003). Total mean scores between diagnostic groups were in the expected direction, with the autism group earning the highest scores, followed by the ASD group, and the non-ASD group had the lowest mean total scores. The authors stated that these results suggest that the total SCQ score corre- sponds with diagnosis and is a reasonable index of symptom severity. However, there is also evi- dence that the diagnostic validity of the SCQ appears to be enhanced when

there is also evi- dence that the diagnostic validity of the SCQ appears to be enhanced when it is used in con- junction with observational measures such as the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 1999) (Corsello et al. 2007, in Hus and Lord 2011).  Whereas the literature agrees that the SCQ is a reliable and valid screening tool for individ- uals 4 years and older, adaptations may need to be made when using the SCQ in children under this age. Corsello and colleagues have

may need to be made when using the SCQ in children under this age. Corsello and colleagues have suggested that when using the SCQ with chil- dren under the age of 5 years, the cutoff score should be lowered in order to improve the sen- sitivity of the measure (Corsello et al. 2007, in Bishop et al. 2008). Another option is to use the Current version of the SCQ, which can be used with children as young as 2 years (Hus and Lord 2011).  Clinical Uses The authors of the SCQ cite three main uses of

young as 2 years (Hus and Lord 2011).  Clinical Uses The authors of the SCQ cite three main uses of the instrument (Rutter et al. 2003). First, it can be used as a screening instrument to detect individ- uals who are in need of a clinical assessment for ASD. Second, SCQ scores can be used as a mea- sure of overall ASD symptomology between dif- ferent groups, such as children with other developmental disorders. Third, scores can be used as an index of severity of ASD symptoms between groups or

disorders. Third, scores can be used as an index of severity of ASD symptoms between groups or in one group over time, as in the case of treatment studies.  When using the SCQ as a screening instrument for ASD, it must be noted that the SCQ does not replace a diagnostic assessment. It should not be used on its own as a diagnostic tool (Rutter et al. 2003).  Social Emotional Skills  Social Gaze  Social Inclusion  Social Initiation  Social Interventions  Susan W. White1,3, Andrea Trubanova

Social Inclusion  Social Initiation  Social Interventions  Susan W. White1,3, Andrea Trubanova Wieckowski3 and Brenna B. Maddox2,3 1Department of Psychology, University of Alabama, Tuscaloosa, AL, USA 2Penn Center for Mental Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA 3Psychology Department, Virginia Tech, Blacksburg, VA, USA  Definition A core feature of Autism Spectrum Disorder (ASD), social disability, does not remit with development (Sigman and

of Autism Spectrum Disorder (ASD), social disability, does not remit with development (Sigman and Ruskin 1999) and may in fact worsen during adolescence when social demands are heightened (Picci and Scherf 2015). “Social interventions” are a diverse group of therapeutic efforts intended to improve social functioning, including ability to make friends, achieve interpersonal intimacy, and navigate novel social situations. Social interventions target improved social competence in numerous ways,

novel social situations. Social interventions target improved social competence in numerous ways, such as directly teaching specific prosocial skills, reducing competing or socially inappropriate behaviors, or training in social cognition believed to contribute to improved social functioning (e.g., emotion recognition, theory of mind). There are multiple clinical approaches to social interven- tions stemming from varied theoretical orientations. Social interventions are also some- times referred

stemming from varied theoretical orientations. Social interventions are also some- times referred to as social skills training programs or relationship-based interventions.  Historical Background Since Kanner’s (1943) original description of autism, social difficulty has been thought of as a prominent, and arguably unifying, characteris- tic of ASD. About three decades later, clinical scientists began to investigate the possibility of social interventions to improve these problems (Bemporad

began to investigate the possibility of social interventions to improve these problems (Bemporad 1979; Stokes 1977). Social interven- tions have historically been firmly rooted in behaviorism, primarily operant conditioning in which behaviors are learned via repeated pairing with reinforcement or reward. Although often a component of treatment for people with ASD, social interventions are also often useful for indi- viduals who struggle with other problems, such as Attention-Deficit/Hyperactivity

useful for indi- viduals who struggle with other problems, such as Attention-Deficit/Hyperactivity Disorder (ADHD), depression, and shyness (e.g., de Boo and Prins 2007; Greco and Morris 2001; Segrin 2000).  Gary Mesibov (1984) extracted key elements (i.e., modeling, coaching, role playing with feed- back) from established social skills training pro- grams and applied them to develop a group social skills treatment model for verbal adolescents and adults (age 14–35 years) with ASD. Shortly

social skills treatment model for verbal adolescents and adults (age 14–35 years) with ASD. Shortly there- after, Williams (1989) implemented a similar group format for an intervention using modeling, role-playing, and playing interactive games. Ten children and adolescents (age 9–16 years) with ASD completed 4 years of a weekly 45-minute social skills training session. These early reports sparked a scientific and clinical curiosity that still persists to this day.  Lovaas (1987) was the first to

a scientific and clinical curiosity that still persists to this day.  Lovaas (1987) was the first to describe behav- ioral modification treatment for young children with ASD, which is based on operant theory and entails intensive therapy across settings. This intensive instruction requires the child to actively engage with his or her social environment, while being provided with consistent reinforcement for adaptive behaviors and interactive play with peers. As a follow-up to this early study,

for adaptive behaviors and interactive play with peers. As a follow-up to this early study, McEachin et al. (1993) looked specifically at social functioning and found that treatment group participants sig- nificantly improved in the area of socialization, based on parent report, relative to control group participants.  Despite these early and informative research studies, a lack of readily available social interven- tion programs for ASD existed well into the 1990s (Klin and Volkmar 2000). Toward

social interven- tion programs for ASD existed well into the 1990s (Klin and Volkmar 2000). Toward the end of the twentieth century, a broader range of social skills interventions was being developed and scientifi- cally investigated, including self-management techniques (Koegel et al. 1992) and sociodra- matic play-based approaches (Thorp et al. 1995). The science was also maturing, as evidenced by more rigorous data collection efforts and recogni- tion of the need for well-characterized

by more rigorous data collection efforts and recogni- tion of the need for well-characterized samples along with manual-based programs to allow for replication.  Current Knowledge Several published meta-analyses on social inter- ventions for individuals with ASD (e.g., Bellini et al. 2007; Wang et al. 2013), along with the National Professional Development Center (NPDC), which is dedicated to promotion of evidence-based practices with individuals with ASD, have sought to determine the impact of

of evidence-based practices with individuals with ASD, have sought to determine the impact of social interventions for people with ASD. Reichow and Volkmar (2010), in their review, determined that social skills groups could be con- sidered an established, evidence-based inter- vention. Indeed, group-based interventions are arguably the most common modality of social intervention. Although group-based interventions have been found to be modestly effective, gains do not necessarily materialize at

interventions have been found to be modestly effective, gains do not necessarily materialize at the level of social behaviors in naturalistic settings (e.g., school) (Gates et al. 2017). In terms of differential impact of constituent aspects of intervention, it appears that video modeling (i.e., using self or other to model skill or behavior being taught via video), a technique employed in many social interventions, is one of the most effective components (e.g., Wang and Spillane 2009). Perhaps

interventions, is one of the most effective components (e.g., Wang and Spillane 2009). Perhaps the most con- sistently reported finding from the applied studies on social interventions for ASD is that there is considerable variability in terms of treatment response across participants.  At the time of this publication, there are sev- eral social intervention curricula for ASD. As an exhaustive review is beyond the scope of this entry, we will provide a brief overview of research on selected

review is beyond the scope of this entry, we will provide a brief overview of research on selected curricula. Readers who wish more in-depth or detailed information are encouraged to read information provided in the suggested selected readings. Groups that apply a cognitive-behavioral approach to train social competence are commonly used. The Program for the Education and Enrichment of Relational Skills (PEERS), a group-based program rooted in cognitive-behavioral therapy, was initially devel-

Skills (PEERS), a group-based program rooted in cognitive-behavioral therapy, was initially devel- oped for adolescents with ASD (Laugeson et al. 2012) and has since been extended to both preschool-age children and adults (Gantman et al. 2012). Results from several randomized controlled trials (RCTs) have supported the effi- cacy of PEERS (Laugeson and Park 2014). The summerMAX program is an intensive, 5-week long, behaviorally based treatment for school- age children. It has demonstrated

intensive, 5-week long, behaviorally based treatment for school- age children. It has demonstrated feasibility and efficacy in both university (Lopata et al. 2010) and community agency settings (Thomeer et al. 2016).  Theatrical, or drama-based interventions, have also been developed to improve social compe- tence in youth with ASD. Theoretically, such interventions not only promote skill generaliza- tion (perhaps via enhanced interaction with typi- cal peers) but also increase

skill generaliza- tion (perhaps via enhanced interaction with typi- cal peers) but also increase perspective-taking and social cognition (e.g., Corbett et al. 2016). The Socio-Dramatic Affective-Relational Intervention (SDARI; Lerner et al. 2011) is a brief (6-week) curriculum, associated with modest improve- ment in ability to detect emotions. The Social Emotional NeuroScience Endocrinology Theatre (SENSE) Theatre (Corbett et al. 2011) combines peer mediation (i.e., training similar-age peers

(SENSE) Theatre (Corbett et al. 2011) combines peer mediation (i.e., training similar-age peers to engage with, and help, the learners with ASD), behavioral skills training, and drama to improve social skills. In an RCT, participants who completed SENSE Theater showed signifi- cant improvements, relative to wait-list control participants, on several indicators of social behav- ior and cognition (Corbett et al. 2016).  There are several other types of social inter- ventions that show considerable

et al. 2016).  There are several other types of social inter- ventions that show considerable promise as being effective for some individuals with ASD. Social Stories (Gray 1998) are a straightforward approach used to explain social situations and behaviors to people with ASD. Social stories are often used to promote appropriate social skills and decrease problem behaviors. Results from several single subject and small sample studies have been quite positive (e.g., Dodd et al. 2008; Sansosti

single subject and small sample studies have been quite positive (e.g., Dodd et al. 2008; Sansosti and Powell-Smith 2008). Pivotal Response Treatment (PRT) is another type of intervention, derived from the principles of applied behavioral analysis (ABA), for people with ASD (Koegel et al. 2006). Instead of targeting distinct individual behaviors, PRT focuses on pivotal areas of a child’s devel- opment. The goal of PRT is to provide learning opportunities within the context of the child’s

opment. The goal of PRT is to provide learning opportunities within the context of the child’s natural environments.  Future Directions The research base on social interventions has matured tremendously over the last decade. We have a better appreciation for the differential im- pact of various treatment components, and con- sumers and practitioners have considerable choice in terms of availably packaged curricula. Never- theless, there are many as-yet unanswered ques- tions related to the

packaged curricula. Never- theless, there are many as-yet unanswered ques- tions related to the clinical impact of social interventions.  Recently, research has been undertaken that will inform our understanding of predictors of treatment response. This work is critical for per- sonalized treatment planning. Clinical science has long-appreciated the fact that response to even our best treatments is not uniform across clients. This is true also for targeting social improvement in people with

is not uniform across clients. This is true also for targeting social improvement in people with ASD. By understanding both predic- tors and moderators of response, we can begin to tailor approaches to fit the client (cf, personal- ized medicine).  Unfortunately, the vast majority of the research in this area has been with preadolescent children. By comparison, research on the feasibility and efficacy of social interventions for very young children or adults, as well as adolescents to some

efficacy of social interventions for very young children or adults, as well as adolescents to some degree, is limited. It will be imperative that we begin to explore how to effectively intervene with older adolescents and adults especially, given the pervasiveness of social disability and its relation- ship to later impairment as well as co-occurring problems (e.g., anxiety). This will not be a straightforward “upward” extension given that some of the best-supported strategies (e.g., peer- video

“upward” extension given that some of the best-supported strategies (e.g., peer- video modeling and mediation) rely on availabil- ity of similar age peers and other support systems.  Additionally, the nature of adult social interaction is incredibly variable across contexts, and there are fewer opportunities for face to face interaction practice with unfamiliar people after exit from secondary school.  Emerging directions for social interventions are diverse. As described by Wieckowski and

school.  Emerging directions for social interventions are diverse. As described by Wieckowski and White (2017), there is growing evidence for the feasibility and utility of technology-based inter- ventions. On the whole, these interventions have been found to be acceptable to end-users (e.g., children with ASD) and target a host of measur- able mechanisms underlying change in social function (e.g., facial emotion recognition). For example, improved ability to detect others’ emo- tions may

(e.g., facial emotion recognition). For example, improved ability to detect others’ emo- tions may contribute to more empathic responding and prosocial behavior. Examples of such inter- ventions include Mind Reading: The Interactive Guide to Emotions (Golan and Baron-Cohen 2006), the Junior Detective Training Program (Beaumont and Sofronoff 2008), and Let’s Face It! (Tanaka et al. 2010). More research is needed to understand the clinical impact and generaliz- ability of technology-based social

is needed to understand the clinical impact and generaliz- ability of technology-based social interventions.  As the field continues to mature with respect to effective social interventions with ASD, we need to focus simultaneously on expansion as well as refinement. Regarding the former, it is critically important that novel approaches be developed (e.g., technology) as this will allow greater choice to consumers and, ultimately, aid dissemination. We do not expect even a well-established treat-

to consumers and, ultimately, aid dissemination. We do not expect even a well-established treat- ment to work for every client or patient. The heterogeneity in cause and presentation of ASD mandates diversity in availability of treatment approach. Regarding refinement, as we continue to deepen our understanding of the processes that underlie social impairments, ability to target key mechanisms will be improved (Lerner et al. 2012) and, likewise, there is greater appreciation of the importance of

be improved (Lerner et al. 2012) and, likewise, there is greater appreciation of the importance of dismantling research to identify the “critical elements” of efficacious interventions. In the future, we will see more equivalence testing of interventions, in order to evaluate relative superi- ority, and adaptive trials in which participants are assessed at regular intervals, in order to determine how allocation (treatment assignment) will pro- ceed. In summary, the field has made great strides

how allocation (treatment assignment) will pro- ceed. In summary, the field has made great strides with regard to social interventions for people with ASD, and we are hopeful about the future with respect to clinicians’ ability to adopt a scientifi- cally informed approach to determining what type of intervention works best for whom, across the lifespan, for people with ASD.  Social Language Development Test  Linda Bowers and Rosemary Huisingh LinguiSystems, Inc, East Moline, IL, USA  Synonyms

Test  Linda Bowers and Rosemary Huisingh LinguiSystems, Inc, East Moline, IL, USA  Synonyms SLDT-A; SLDT-E; Social language development test-adolescent; Social language development test-elementary  Description The tests of social language development- elementary and adolescent (Bowers et al. 2008, 2010) are diagnostic tests of social language skills. They are designed to determine the role language development plays in the acquisition of social understanding for students from the ages of

language development plays in the acquisition of social understanding for students from the ages of 6.0–17.11 years from the following educational settings: regular education (no active IEP) and special education (active IEP). Students with a diagnosis of autism and delayed language devel- opment were included in the item pool and stan- dardization studies.  The testing materials are as follows:  *   The social language development test- elementary (SLDT-E) includes an examiner’s manual, the

*   The social language development test- elementary (SLDT-E) includes an examiner’s manual, the scoring standards and example responses book, a picture stimuli book, and test forms. Ages include 6.0–11.11 years. *   The SLDT-E is comprised of four subtests designed to differentiate how students with lan- guage impairments and autism differ from their typically developing peers in social cognitive pro- cessing, in identifying feelings of participants in a conflict, in identifying and evaluating

pro- cessing, in identifying feelings of participants in a conflict, in identifying and evaluating strategies to overcome obstacles, and in knowing when a con- flict is resolved. The subtests are the following: (a) making inferences, (b) interpersonal negotia- tion, (c) multiple interpretations, and (d) supporting peers. Each subtest has 12 items.  Many children with language impairments (LI) exhibit poor social interaction with others, and these social differences may appear as early as

exhibit poor social interaction with others, and these social differences may appear as early as preschool and continue or intensify as these children mature (Brinton et al. 2004; Cohen et al. 1998; Craig 1993; Fujiki et al. 1997; Hadley and Rice 1991). A tool that would pinpoint areas of strengths and weaknesses would guide speech- language pathologists (SLPs) in determining appropriate intervention goals and objectives. Tasks in this test focus on taking someone else’s perspective, making

goals and objectives. Tasks in this test focus on taking someone else’s perspective, making correct inferences, negotia- tion conflicts with peers, being flexible in interpreting situations, and supporting friends diplomatically.  *   The social language development test- adolescent (SLDT-A) includes an examiner’s manual, the scoring standards and example responses book, a picture stimuli book, test forms, and an audio CD used with subtest E: interpreting ironic statements. Ages include

book, test forms, and an audio CD used with subtest E: interpreting ironic statements. Ages include 12.0–17.11 years. *   The SLDT-A is comprised of five subtests designed to differentiate typically developing ele- mentary children from typically developing ado- lescents, typically developing adolescents from language-impaired adolescents, and language- impaired adolescents from adolescents identified with high-functioning autism. The subtests are the following: (a) making inferences, (b)

identified with high-functioning autism. The subtests are the following: (a) making inferences, (b) interpreting social language, (c) problem solving (stating and justifying solutions), (d) social interaction, and (e) interpreting ironic statements. Each subtest has 12 items each. Three of the subtests have two questions per item.  Language is the skill that is central to engaging in all aspects of peer relationships. Students with limited language skills are susceptible to misinter- pretations

peer relationships. Students with limited language skills are susceptible to misinter- pretations and have more difficulty participating in the highly verbal, rapidly delivered social pro- cesses used in peer group formation (Gallagher 1993). They often have difficulty maintaining friendships, negotiating conflict, and getting along with others. Tasks in this test focus on taking someone else’s perspective, making correct inferences, solving problems with peers, interpreting social language, and

making correct inferences, solving problems with peers, interpreting social language, and understanding idioms, irony, and sarcasm.  These tests do not address all aspects of social language or pragmatic skills. Rather, they focus on social interpretation and interaction with peers and/or friends. For both tests, the items are not arranged in order of difficulty because, as of yet, no hierarchy is established for these tasks. For this reason, there are no basals or ceilings; each subtest is

is established for these tasks. For this reason, there are no basals or ceilings; each subtest is administered in its entirety to every student.  The tests begin with the first item in subtest A. Explicit directions for how to administer the items are provided. Demonstration items are pro- vided for each subtest. These items may be altered or explained to show the student how to respond. Following the demonstration item, each sub- test begins with item 1 regardless of the student’s age. Each

the demonstration item, each sub- test begins with item 1 regardless of the student’s age. Each item is presented verbally. The only exception is subtest E: interpreting ironic state- ments on the SLDT-A. An audio CD is used to administer this subtest.  Allowable prompts, used only as worded, are listed on the test forms. These are used if the student’s response is unclear. These prompts are not used to give the student “a second chance” after a clear, complete, but incorrect response.  More

used to give the student “a second chance” after a clear, complete, but incorrect response.  More than one testing session is allowable if the break between sessions occurs upon comple- tion of a subtest and all of its questions.  The test examiner must be a trained profes- sional familiar with language disorders (e.g., speech-language pathologist, psychologist) as they require careful interpretation of responses by the examiner.  Subtests A in both tests tap the student’s ability to infer what

of responses by the examiner.  Subtests A in both tests tap the student’s ability to infer what someone in a photo is thinking. The student also states the visual clues that facilitated making the inference. Skills assessed in these sub- tests include the ability to: *   Detect nonverbal and context clues in a picture of a person or people *   Assume the perspective of a specific person in a picture *   Infer what the person is thinking *   Express the person’s thought as a relevant, direct

*   Infer what the person is thinking *   Express the person’s thought as a relevant, direct quotation *   State the visual clue that suggests what the person is thinking  A score of 1 or 0 is assigned to each response based on the relevancy and quality of the response. For the SLDT-A, the student must pro- vide an appropriate response for both questions to earn a score of 1.  SLDT-E Subtest B: Interpersonal Negotiation asks the student to imagine being involved in a given conflict with a

B: Interpersonal Negotiation asks the student to imagine being involved in a given conflict with a friend. The student states the problem (task a), proposes an appropriate solution (task b), and explains why that would be a good solution (task c). No pictures or photos are used for this subtest. Skills assessed in this subtest include the ability to: *   Understand a short passage about a conflict with a friend *   Infer the perspective of each person in the conflict *   State the problem clearly

with a friend *   Infer the perspective of each person in the conflict *   State the problem clearly *   Propose a solution *   Explain why that would be a good solution  A score of 3, 2, 1, or 0 is assigned to each response based on relevancy and quality.  SLDT-A Subtest B: Interpreting Social Lan- guage asks the student questions about how peo- ple communicate. The student is asked to give an example and an appropriate context in which the type of communication would be used. Skills assessed

and an appropriate context in which the type of communication would be used. Skills assessed include the ability to: *   Demonstrate actions *   Tell an appropriate reason or use for an action *   Think/talk about language *   Interpret figurative language including idioms  A score of 1 or 0 is assigned to each response based on relevancy and quality.  SLDT-E Subtest C: Multiple Interpretations asks the student to provide two distinctively dif- ferent, plausible interpretations of the same

asks the student to provide two distinctively dif- ferent, plausible interpretations of the same photo. Skills assessed in this subtest include the ability to: *   Logically interpret a situation in a photo in two different ways  A score of 1 or 0 is assigned to each response, based on relevancy and quality.  SLDT-A Subtest C: Problem Solving (Stating and Justifying Solutions) asks the student to solve a problem by stating and justifying a logical solu- tion. The student must give both a

to solve a problem by stating and justifying a logical solu- tion. The student must give both a solution and a justification. Skills assessed include the ability to: *   State an appropriate solution to a problem in a situation with a peer *   Justify the solution *   Negotiate conflicts with peers *   Take the perspective of the other person in the situation *   State the conflict from a mutual perspective  A score of 1 or 0 is assigned to each response based on relevancy and quality.  SLDT-E

perspective  A score of 1 or 0 is assigned to each response based on relevancy and quality.  SLDT-E Subtest D: Supporting Peers asks the student to take the perspective of someone involved in a situation with a friend. The student tells what to say in reaction to the friend’s situa- tion. Responses receive credit based on the degree of support they offer to the friend, not on the truthfulness.  Being truthful is a basic maxim of interper- sonal communication (Grice 1980), yet speakers are also

truthful is a basic maxim of interper- sonal communication (Grice 1980), yet speakers are also expected to help, not hurt, their commu- nicative partners (Lakoff 1973; Sweetser 1987). Telling white lies successfully requires reconcil- ing these apparently contradictory communica- tion rules and knowing when and how to adapt them to suit various social situations (Talwar et al. 2007).  A score of 4, 3, 2, 1, or 0 is assigned to each response based on relevancy and quality of sup- port for a

of 4, 3, 2, 1, or 0 is assigned to each response based on relevancy and quality of sup- port for a friend.  SLDT-A Subtest D: Social Interaction asks the student to listen to situations and answer questions about them. In some situations, an appropriate response may include a dishonest or rude remark. Skills assessed include the ability to: *   Listen to short passages *   Understand social interactions with peers *   Provide an appropriate, supportive response *   Ignore the situation (when

with peers *   Provide an appropriate, supportive response *   Ignore the situation (when doing nothing is the best option)  A score of 1 or 0 is assigned to each response based on the relevancy and quality of support for the situation.  SLDT-A Subtest E: Interpreting Ironic State- ments asks the student to listen to some situations on a CD. The narrator reads the situations and asks what someone means at the end of each one. Research on intonation features associated with irony is

what someone means at the end of each one. Research on intonation features associated with irony is inconsistent, and ironic speech does not necessarily include “signature acoustic features” (Bryant and Fox Tree 2005; Nakassis and Snedeker 2002). For this reason, the assumed features of irony (e.g., exaggerated pitch) were “toned down” so that the student must rely on context discrepancies and other context clues to determine the ironic meaning of a statement. Our research proved that including

context clues to determine the ironic meaning of a statement. Our research proved that including exaggerated into- nations made the task too easy for the age range of this test. Skills assessed included the ability to: *   Understand common idioms used in everyday language *   Reject the literal meaning of the statement *   Understand the speaker’s belief *   Judge the speaker’s attitude *   Recognize sarcasm and interpret irony  A score of 1 or 0 is assigned to each response based on the

Recognize sarcasm and interpret irony  A score of 1 or 0 is assigned to each response based on the relevancy and quality.  Historical Background In 1983, we published a test of pragmatics called the interpersonal language skills assessment (ILSA) by speech-language pathologists, Carolyn Blagden (now LoGiudice) and Nancy McConnell. This test of pragmatic behaviors looked at inter- action of 8–13-year-olds while playing a board game. The authors wanted to determine if there was age progression

while playing a board game. The authors wanted to determine if there was age progression and reverse age progression on such behaviors as advising, commanding, accusing, deprecating, justifying, and supporting. They found that in general, as students got older, their outright negative comments decreased while their sarcasm increased. They also found out that comments with grammar or semantic errors decreased with age. Although some speech pathologists were curious about the skills assessed in

decreased with age. Although some speech pathologists were curious about the skills assessed in the ILSA, there was a general lack of interest from the field. By 1989, this test was out of print.  Between 1990 and 2008, we continued to scour the research on pragmatic/social language skills. Our hypothesis was that children develop social “governors” as they mature. Over time, research articles about peer support, negotiat- ing, making inferences, and interpreting facial expression and body

about peer support, negotiat- ing, making inferences, and interpreting facial expression and body language appeared in the literature. We also read research about the development of these skills in children on the autism spectrum and on children who had lan- guage disorders but who were not classified as autistic.  Despite a growing body of research, as of yet, there is no well-recognized, research-based devel- opmental model for children learning social inter- action skills. That may be because

devel- opmental model for children learning social inter- action skills. That may be because the following: *   Adults seem to have mastered social interac- tion without any conscious effort or formal instruction. *   Much of social language is abstract and covert and cannot be observed directly. We can only assume what someone else is thinking based on nonverbal cues, background knowledge, and the person’s words and actions.  We do know that children with language impairments exhibit poor

the person’s words and actions.  We do know that children with language impairments exhibit poor social interaction with others. We decided that if speech pathologists had an effective, standardized tool to assess the social interaction skills of students that would also pin- point areas of strengths and weaknesses, it would guide the SLP in qualifying students for therapy and help in determining appropriate intervention goals and objectives.  We began writing and rewriting items and test- ing

appropriate intervention goals and objectives.  We began writing and rewriting items and test- ing and retesting children. Our item pool results showed us the need for a scoring system that was sensitive to subtle changes in verbal behavior. The standardization studies proved the scoring stan- dards were correct but that further refining was necessary. These tests represent the important data we gathered and we believe are a good start toward identifying children with social language

data we gathered and we believe are a good start toward identifying children with social language differences.  Psychometric Data Item pool and standardization studies were conducted for both tests. The items and subtests for both tests were subjected to rigorous statistical analyses in these studies.  The item pool and standardization studies for each test included subjects from regular educa- tion, special education, all socioeconomic levels, and from various racial groups, including White,

tion, special education, all socioeconomic levels, and from various racial groups, including White, Black, Hispanic or Latino, and other mixed racial group. Subjects with IEPs for special services but who attended regular education classes were also included. Subjects who did not use English profi- ciently at school, were nonverbal, had any degree of hearing loss, or resided outside the United States were excluded from the standardization studies for each test. Subjects were from all geo-

States were excluded from the standardization studies for each test. Subjects were from all geo- graphic regions of the United States. The sample population reflected the national school popula- tion demographics from the 2004 national census for race, gender, age, and educational placement for the item pool and standardization studies.  For both tests, the item pool items were admin- istered to random samples of subjects at yearly age intervals. Subjects included in the item pool studies were

random samples of subjects at yearly age intervals. Subjects included in the item pool studies were not included in the standardization studies. A team of expert speech-language pathologists determined credit levels for item pool responses during a response analysis session. Items that did not show statistical age progression, showed bias, or were not deemed fair for an ethnic group were eliminated. Item difficulty indexes and item dis- crimination indexes were computed for each item at each of

Item difficulty indexes and item dis- crimination indexes were computed for each item at each of the yearly age levels. Items retained for the final versions of the test met two empirical criteria: 1.  Demonstrate age progression in terms of increasing percents of subjects passing at suc- cessive age levels 2.  Demonstrate significant discrimination between high and low scorers on the subtest at each age level  The test examiners were speech-language pathologists who held a master’s degree or

each age level  The test examiners were speech-language pathologists who held a master’s degree or higher from an accredited university.  SLDT-E Item Pool 1.  Four subtests, 68 items. 2.  N ¼ 390 subjects ages 6 years, 0 months to 11 years, 11 months. 3.  Data was gathered at yearly age intervals.  SLDT-E Standardization 1.  Four subtests, 48 items. 2.  N ¼ 1104 subjects ages 6 years, 0 months to 11 years, 11 months. 3.  Data was gathered at half-year age intervals. The item pool analysis

to 11 years, 11 months. 3.  Data was gathered at half-year age intervals. The item pool analysis showed that significant changes in social language development could be shown by grouping subjects in this manner. 4.  Test examiners were required to make value judgments regarding the appropriateness of responses and to score them as indicated on the scoring standards provided to them. 5.  The final version of the test has four subtests, 12 items per subtest for a total of 48 items.  SLDT-A Item

version of the test has four subtests, 12 items per subtest for a total of 48 items.  SLDT-A Item Pool 1.  Five subtests, 89 items. 2.  N ¼ 500 subjects ages 12 years, 0 months, to 17 years, 11 months. 3.  Data was gathered at yearly age intervals.  SLDT-A Standardization 1.  Five subtests, 69 items. 2.  N ¼ 834 subjects ages 12 years, 0 months, to 17 years, 11 months. 3.  Data was gathered at half-year age intervals. The item pool analysis showed that significant changes in social language

half-year age intervals. The item pool analysis showed that significant changes in social language development could be shown by grouping subjects in this manner. 4.  Test examiners were required to make value judgments regarding the appropriateness of responses and to score them as indicated on the scoring standards provided to them. 5.  The final version of the test has five subsets, 12 items per subtest for a total of a 60 items.  Mean and median raw score values and stan- dard deviations for

subtest for a total of a 60 items.  Mean and median raw score values and stan- dard deviations for each subtest and the total test score were computed for both tests. There were no significant gender differences which supported the use of combined male-female norms for the elementary and adolescent tests.  For reporting purposes, three types of scores are used: age equivalents, percentile ranks, and standard scores.  Reliability was established by both the use of test-retest and internal

and standard scores.  Reliability was established by both the use of test-retest and internal consistency methods. Table 1 represents the internal consistency results for the SLDT-E, and Table 2 represents the inter- nal consistency results for the SLDT-A.  **Social Language Development Test, Table 1 Test-retest reliability coefficients and standard errors of measurement for each task, each subtest, and total test by age**

| Chronological age | N | Making inferences | | | Interpersonal negotiation | | | | Multiple interpretations | Supporting peers | Total test |
|:------------------|:--|:------------------|:--|:--|:------------------------|:--|:--|:--|:-----------------------|:-----------------|:-----------|
| | | Task a | Task b | Making inferences total | Task a | Task b | Task c | Interpersonal negotiation total | r | SEM | r | SEM |

| 6–0 . . . 6–5 | 9 | .94 | 0.79 | .46 | 2.35 | .87 | 1.98 | .64 | 6.12 | .25 | 6.30 | .40 | 6.82 | .59 | 15.21 | .70 | 1.73 | .66 | 5.86 | .59 | 23.11 |
| 6–6 . . . 6–11 | 3 | .50 | 2.46 | 1.00 | 0.00 | .99 | 0.66 | .40 | 12.24 | 1.00 | 0.26 | .99 | 0.82 | 1.00 | 1.16 | .98 | 0.43 | .99 | 0.95 | 1.00 | 1.44 |
| 7–0 . . . 7–5 | 3 | .97 | 0.52 | .94 | 0.71 | .98 | 0.81 | .20 | 7.76 | .80 | 9.05 | 1.00 | 0.40 | .94 | 4.74 | .93 | 0.76 | .97 | 1.87 | .98 | 4.81 |

| 7–6 . . . 7–11 | 11 | .75 | 1.63 | .42 | 2.22 | .67 | 3.02 | .87 | 2.50 | .70 | 2.95 | .72 | 3.59 | .81 | 7.19 | .59 | 1.90 | .81 | 4.02 | .91 | 8.64 |
| 8–0 . . . 8–5 | 12 | .91 | 1.09 | .86 | 1.16 | .91 | 1.70 | .80 | 2.78 | .91 | 1.74 | .84 | 2.65 | .87 | 5.89 | .53 | 1.91 | .86 | 3.19 | .88 | 9.75 |
| 8–6 . . . 8–11 | 8 | .14 | 3.08 | .53 | 1.85 | .58 | 3.44 | .66 | 4.11 | .82 | 2.93 | .86 | 2.59 | .92 | 5.06 | .59 | 1.84 | .65 | 5.40 | .76 | 14.54 |

| 9–0 . . . 9–5 | 7 | .83 | 1.22 | .74 | 1.01 | .87 | 1.58 | .57 | 4.28 | .72 | 2.89 | .94 | 1.43 | .80 | 6.55 | .75 | 1.41 | .92 | 2.41 | .90 | 7.69 |
| 9–6 . . . 9–11 | 8 | .67 | 1.67 | .77 | 0.97 | .83 | 1.75 | .05 | 4.86 | .63 | 2.98 | .69 | 3.10 | .56 | 8.48 | .78 | 1.30 | .86 | 2.95 | .66 | 12.64 |
| 10–0 . . . 10–5 | 6 | .44 | 2.08 | .82 | 1.02 | .72 | 2.53 | .90 | 1.94 | .28 | 4.87 | .05 | 5.92 | .12 | 14.89 | .67 | 1.59 | .53 | 5.06 | .53 | 17.21 |

| 10–6 . . . 10–11 | 9 | .36 | 2.47 | .69 | 1.03 | .48 | 3.03 | .48 | 2.69 | .80 | 2.07 | .28 | 4.54 | .57 | 6.88 | .86 | 0.99 | .58 | 4.30 | .58 | 11.34 |
| 11–0 . . . 11–5 | 10 | .72 | 1.82 | .30 | 2.99 | .58 | 3.53 | .39 | 5.56 | .68 | 3.81 | .53 | 4.98 | .84 | 7.77 | .88 | 1.04 | .89 | 2.77 | .78 | 15.27 |
| 11–6 . . . 11–11 | 10 | .35 | 2.35 | .88 | 0.70 | .70 | 2.32 | .69 | 2.53 | .69 | 3.20 | .90 | 1.94 | .94 | 3.35 | .57 | 1.67 | .30 | 6.75 | .87 | 8.71 |

| Median | | .63 | 1.77 | .65 | 1.33 | .77 | 2.20 | .45 | 4.78 | .56 | 3.59 | .68 | 3.23 | .75 | 7.26 | .74 | 1.38 | .75 | 3.79 | .79 | 11.26 |
| r reliability coefficient, SEM standard error of measurement | | | | | | | | | | | | | | | | | | | | |
 **Social Language Development Test, Table 2 Reliability based on item homogeneity: Kuder-Richardson (KR20) coefficients for each task, each subtest, and total test by age**

| Chronological age | Making inferences | | | Interpersonal negotiation subtest | | | | Multiple interpretations | Supporting peers | Total test |
|:------------------|:------------------|:--|:--|:------------------------------|:--|:--|:--|:-----------------------|:-----------------|:-----------|
| | Task a | Task b | Making inferences total | Task a | Task b | Task c | Interpersonal negotiation total | | | |

| 6–0 . . . 6–5 | .75 | .73 | .84 | .84 | .76 | .83 | .93 | .74 | .77 | .95 | | 6–6 . . . 6–11 | .78 | .76 | .86 | .86 | .77 | .83 | .93 | .71 | .77 | .96 | | 7–0 . . . 7–5 | .70 | .74 | .82 | .75 | .71 | .78 | .89 | .68 | .76 | .94 | | 7–6 . . . 7–11 | .75 | .73 | .82 | .81 | .67 | .75 | .90 | .70 | .74 | .93 | | 8–0 . . . 8–5 | .78 | .77 | .86 | .80 | .66 | .75 | .88 | .65 | .66 | .93 | | 8–6 . . . 8–11 | .76 | .74 | .84 | .83 | .73 | .78 | .91 | .68 | .77 | .95 | | 9–0 . . . 9–5 | .71 | .62

. . 8–11 | .76 | .74 | .84 | .83 | .73 | .78 | .91 | .68 | .77 | .95 | | 9–0 . . . 9–5 | .71 | .62 | .80 | .83 | .52 | .75 | .87 | .68 | .77 | .93 | | 9–6 . . . 9–11 | .70 | .63 | .79 | .76 | .56 | .68 | .85 | .67 | .73 | .92 | | 10–0 . . . 10–5 | .69 | .74 | .83 | .78 | .70 | .76 | .90 | .67 | .62 | .93 | | 10–6 . . . 10–11 | .76 | .60 | .80 | .38 | .46 | .69 | .77 | .65 | .57 | .87 |

| 11–0 . . . 11–5 | .80 | .78 | .88 | .89 | .78 | .82 | .94 | .74 | .83 | .97 | | 11–6 . . . 11–11 | .73 | .67 | .80 | .45 | .44 | .72 | .75 | .65 | .65 | .89 |

| Median KR20 | .74 | .71 | .83 | .75 | .65 | .76 | .88 | .68 | .72 | .93 |  Empirical validity for each test was established with contrasted groups. Validity was established by comparing the test performances of randomly selected subjects from the sample population with a matched sample of subjects with language dis- orders and autism spectrum disorders receiving special services. The SLDT-E and the SLDT-A significantly discriminate between these clinical groups at most age levels. The

and the SLDT-A significantly discriminate between these clinical groups at most age levels. The exception is on the SLDT-E for ages 6–0 through 6–5. In this age group, the normative sample and the language- disordered group did not show a significant dif- ference for the total test score.  Construct validity was established with point biserial correlations. Inspection of these correla- tions revealed highly satisfactory levels of item consistency for both tests (88% for the SLDT-E and 97% for the

highly satisfactory levels of item consistency for both tests (88% for the SLDT-E and 97% for the SLDT-A). The subtest intercor- relations and the correlations of individual sub- tests with the total test suggest that the subtests do assess separate social language functions but also measure a common general dimension.  Overall, internal consistency estimates were satisfactory.  Race/socioeconomic group differences were conducted at the subtest level for both tests. Ran- dom samples of White,

group differences were conducted at the subtest level for both tests. Ran- dom samples of White, Black, and Hispanic or Latino student performances at the item level were compared by analyzing the proportion of students passing each item and at the subtest level by: *   Chi-square analyses to determine if significant relations existed between race and test performance *   Two-factor analysis of variance (ANOVA) analyses  In the SLDT-E, there were race differences in only 11% of the total number

(ANOVA) analyses  In the SLDT-E, there were race differences in only 11% of the total number of the possible statistical tests for race and socioeconomic status (SES) group differences in only 18% of the statis- tical tests for that factor. In the SLDT-A, there were race and SES group differences in only 5% of the total number of the possible statistical tests for race and SES differences in only 15% of the statistical tests for that factor. The differences were usually small with most of them

15% of the statistical tests for that factor. The differences were usually small with most of them in the magnitude of one or two raw scores. Collectively, the results indi- cate that neither race nor SES group has a major impact on possible race or SES group bias for either the elementary or adolescent test. Further study is warranted however.  Clinical Uses The results obtained from diagnostic testing should help the examiner to: 1.  Identify the student’s strengths and weaknesses 2.  Make

testing should help the examiner to: 1.  Identify the student’s strengths and weaknesses 2.  Make recommendations for additional testing 3.  Make well-founded, educationally significant recommendations for remediation 4.  Help teachers, parents, guardians, and the stu- dent understand the nature of the student’s social language functioning 5.  Make well-founded recommendations for boosting social success in school and at home  A student’s performance on either of these tests may relate to his

success in school and at home  A student’s performance on either of these tests may relate to his academic performance and peer interaction. A student may perform poorly on these tests because he has below average vocabu- lary skills, difficulty recognizing and interpreting facial expressions and body language, does not know the steps involved in processing a photo of someone, etc.  Performance on the individual subtests and total test performance, along with additional diag- nostic tests and

on the individual subtests and total test performance, along with additional diag- nostic tests and parent/teacher report, will give the SLP a framework for developing a remediation program that addresses the student’s social lan- guage weaknesses and builds on the student’s strengths.  For each subtest on the SLDT-E and SLDT-A, the authors identified error patterns and, based on those, identified remediation strategies for the SLP. These are described in the examiner’s manuals.  As previously

remediation strategies for the SLP. These are described in the examiner’s manuals.  As previously stated, these tests do not address all aspects of social language or pragmatic skills. They focus on social interpretation and interaction with peers and/or friends and are the first tests to have normative data on which to base therapeutic decisions. The authors encourage further research into social language skill development.  Social Language Development Test-Adolescent  Social Language

social language skill development.  Social Language Development Test-Adolescent  Social Language Development Test- Elementary  Social Learning  Social Learning Disability/ Difference  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 Autism spectrum disorder  Definition The term social learning disability/differences was coined by Volkmar (2016)

disorder  Definition The term social learning disability/differences was coined by Volkmar (2016) as a way to more simply explain the nature of autism/Asperger’s disorder/autism spectrum disorder. It was also chosen as a non-prerogative term that readily con- veyed way to play problems/differences in social learning in the broader context of learning disabil- ities. This has some practical advantages in coun- tries like the USA which strongly emphasize inclusion of individuals with learning

in coun- tries like the USA which strongly emphasize inclusion of individuals with learning problems in ongoing community life and occupation.  Terms like learning disability or learning dis- order have commonly been used in English- speaking countries tor effete to a range of problem in various areas such as reading, writing, math, spelling, organization (executive functioning), and so forth (O’Brien and Pearson 2004). The literature on these disabilities/differences is relatively large and

and Pearson 2004). The literature on these disabilities/differences is relatively large and complex and the ways in which these problems have been defined both diagnostically and legally. It is often the case that a diagnosis of learning disability is made in the context of an individual with average (or even above average) intellectual potential. In the USA Section 504 of the Rehabil- itation Act of 1973 had granted certain rights to individuals in occupation and educational (college) settings.

of 1973 had granted certain rights to individuals in occupation and educational (college) settings. This act differs from the Individuals with Disabilities Education Act that applies to children attending schools. Similar regulations exhibits in Canada and the UK while differing at times in specific definitions employed. The effects of learn- ing disabilities broadly defined can be significant with lowered academic performance, poor self- esteem, and social problems. The term also (implicitly)

lowered academic performance, poor self- esteem, and social problems. The term also (implicitly) recognizes the broad range of problem referred to typically as the broader autistic pheno- type (Ingersoll et al. 2014).  For autism spectrum disorder, it is increasingly clear, as Kanner himself first suggested (1943) that the marked problems in social engagement, often from the beginning of life, have profound conse- quents for learning and may result in significant long-term social, communicative,

profound conse- quents for learning and may result in significant long-term social, communicative, and cognitive problems and additionally may complicate organi- zation of executive functioning skills (NRC 2001; McPartland et al. 2014). There is an increasing large literature noting problems in areas such as joint attention, face perception, and so forth, and it presumed that these problem pose great challenges for the individual acquiring knowledge in more typical ways (McPartland et al. 2014).

challenges for the individual acquiring knowledge in more typical ways (McPartland et al. 2014). Put another way without the “social frame” within which to view the world individuals with social learning differences/disorders may learn idiosyncratic ways often employing unusual strategies such as gestalt learning (Brosnan et al. 2004).  Practical advantages of the term include the focus on the social learning aspects of autism. It also may simplify understanding of lay audiences. As with other

learning aspects of autism. It also may simplify understanding of lay audiences. As with other learning difficulties/differences, it also emphasizes the importance of inclusion and a commitment to helping individuals with learning differences.  Social Motivation and Friendship Experiences of Autistic Adolescents  Felicity Sedgewick1 and Elizabeth Pellicano2 1School of Education, University of Bristol, Bristol, UK 2Macquarie School of Education, Macquarie University, Sydney, NSW, Australia

Bristol, Bristol, UK 2Macquarie School of Education, Macquarie University, Sydney, NSW, Australia  Definition Social motivation is defined as the intrinsically rewarding nature of interacting with other people. Friendships are defined as reciprocal relation- ships between two people, characterized by communication over time and a degree of emo- tional closeness and trust.  We use “identify-first” language (“autistic person”) rather than person-first language (‘per- son with autism’), because it is

(“autistic person”) rather than person-first language (‘per- son with autism’), because it is the preferred term of autistic activists (Sinclair 1999) and many autistic people and their families (Kenny et al. 2016) and is less associated with stigma (Gernsbacher 2017).  Historical Background Having stable reciprocal friendships is held to be a key indicator of a “good adult outcome” (Goldfarb et al. 1976). It is unsurprising, then, that many adolescents and adults diagnosed with autism – defined

1976). It is unsurprising, then, that many adolescents and adults diagnosed with autism – defined in part by “deficits in developing, maintaining, and understanding relationships” (American Psychiatric Association 2013) – rarely achieve such good outcomes, as defined in this way. Long-term longitudinal studies have found that autistic people have few, if any, friends, are less likely to be married or in a long-term romantic relationship (Howlin 2000; Howlin et al. 2013), and are more likely to

or in a long-term romantic relationship (Howlin 2000; Howlin et al. 2013), and are more likely to rely on their parents for social support than on same-age peers or col- leagues (Howlin et al. 2004) than their neurotypical counterparts. These findings have fueled a wealth of research on the social connec- tions of autistic children and young people (review: Petrina et al. 2014) and generated numer- ous interventions and supports designed to help autistic children and young people develop and

ous interventions and supports designed to help autistic children and young people develop and maintain long-lasting friendships with others (review: Chang and Locke 2016).  There is increasing recognition, however, that traditional, normative markers of what a success- ful (social) outcome is for an autistic person all too often have been derived on the basis of non- autistic researchers and clinicians’ perspectives, rather than on the views of young autistic people themselves (Cribb et al.

perspectives, rather than on the views of young autistic people themselves (Cribb et al. 2019; Ruble and Dalrymple 1996). In this review, we provide an overview of research, which focuses on young autistic people’s own subjective experiences of their friendships, identifies key factors that contrib- ute to variation in those definitions and outcomes, and seeks to develop effective interventions to support them in achieving their goals.  Current Knowledge Friendships on the Autism Spectrum  It has

them in achieving their goals.  Current Knowledge Friendships on the Autism Spectrum  It has been repeatedly demonstrated that young autistic people have fewer friendships (Bauminger and Shulman 2003) and higher levels of loneliness (Bauminger and Kasari 2000), and experience greater social exclusion than both neurotypical young people and those with other neurodevelopmental conditions (Kasari, Locke, Gulsrud and Rotheram-Fuller 2011; Locke, Ishijima, Kasari, and London 2010; Rowley et al.

Locke, Gulsrud and Rotheram-Fuller 2011; Locke, Ishijima, Kasari, and London 2010; Rowley et al. 2012). Difficulties with developing friend- ships and social relationships have often been attributed to “diminished social motivation” (Chevallier et al. 2012) suggesting that autistic people cannot, and do not want, to form friend- ships (for critical review, see Jaswal and Akhtar 2019). Yet, anecdotal reports combined with long- standing empirical work suggest, however, that this is not always, or

reports combined with long- standing empirical work suggest, however, that this is not always, or even usually, the case. Research has demonstrated that autistic peo- ple are interested in forming secure and support- ive friendships and are emotionally invested in the friendships they have (Calder et al. 2013; Sumiya et al. 2018). They report having friends and best friends (Mendelson et al. 2016; Sedgewick et al. 2016) and have a desire to play with, and chat to, their non-autistic peers

2016; Sedgewick et al. 2016) and have a desire to play with, and chat to, their non-autistic peers (Travis et al. 2001). Autistic children tend to have fewer friends than non-autistic children, see those friends less often, and tend to focus on shared activities rather than emotional shar- ing – but are highly satisfied with their friend- ships regardless of these differences (Petrina et al. 2014). This is the case regardless of whether their nominated friend is also autistic, and the

al. 2014). This is the case regardless of whether their nominated friend is also autistic, and the non-autistic friends of autistic children are just as happy with the friendship as the autis- tic partner (Petrina et al. 2017). Importantly, a recent study has shown that mental age-matched autistic and non-autistic children (estimated average 10 years old) had similar expectations of their friendships (Bottema-Beutel et al. 2018).  The extent and nature of young autistic peo- ple’s friendships

(Bottema-Beutel et al. 2018).  The extent and nature of young autistic peo- ple’s friendships could be influenced by several factors, including (1) homophily, (2) others’ acceptance and inclusion of young autistic people, (3) an individual’s motivation to make and keep friends, and (4) gender.  **Homophily.** Homophily – similar interests, beliefs, and attributes – is a strong element in the friendships of non-autistic young people (Shrum et al. 1988), and the same is true for young autistic

of non-autistic young people (Shrum et al. 1988), and the same is true for young autistic people. Recent research has shown that they take similar features into consideration when making and maintaining friendships as their non-autistic counterparts, such as shared interests and wanting similar types and levels of interaction (Finke et al. 2019). Research has also demonstrated that young autistic people who are involved in extra- curricular activities like sports and hobby clubs have more

people who are involved in extra- curricular activities like sports and hobby clubs have more friends than those who do not take part in these activities, often facilitated by the shared interest (Dovgan and Mazurek 2019). Shared interests can also help to build social skills, thereby improving social relationships (Nabors et al. 2017). These shared interests do not have to be in-person activities. Many autistic people make genuine friendships online, for example, through gaming or social media

Many autistic people make genuine friendships online, for example, through gaming or social media (Brownlow et al. 2015; Ringland et al. 2016). Online interac- tions require less decoding of complex social information, such as tone of voice and body lan- guage, and come with a ready-made set of emo- tional indicators (emojis) and non-verbal reactions (e.g., gifs, memes) with recognized meanings. Adults on the autism spectrum have expressed that communicating online is good for them as it gives

Adults on the autism spectrum have expressed that communicating online is good for them as it gives them time to plan what they want to say and because it removes the challenges of face-to-face talking (Benford and Standen 2009; Burke et al. 2010). Social media use has been shown to be associated with higher friendship quality for autistic adolescents, though high levels of anxiety had similar negative effects on offline and online friendships (van Schalkwyk et al. 2017). That online friendships

effects on offline and online friendships (van Schalkwyk et al. 2017). That online friendships should be consid- ered a central part of our definition of friendship is important in recognizing the reality of social engagement in the modern world.  **Acceptance and Inclusion.** Another aspect which has been found to be key in building positive friendships for young autistic people is acceptance. Research in this area is relatively new, although there is a multitude of first- person accounts of the

in this area is relatively new, although there is a multitude of first- person accounts of the stigma experienced by autistic people and the difference an accepting community can make to wellbeing and quality of life. Among autistic people, greater acceptance of their autism and associated needs is linked to better relationships, better mental health, and greater life satisfaction (Cage et al. 2018). Positive self-perceptions also mediate the relationship between increased self-esteem and better

Positive self-perceptions also mediate the relationship between increased self-esteem and better mental health (Cooper et al. 2017). Young autistic people are often anxious about “getting things wrong” socially, so finding friends who are accepting of their differences and allow them to be their authentic selves is important, and these friend- ships are stronger than relationships where they feel they must pretend not to be autistic (Sosnowy et al. 2019). Indeed, positive correlations have been

they must pretend not to be autistic (Sosnowy et al. 2019). Indeed, positive correlations have been found between good peer interactions and friendships and increased self-esteem among young autistic people (Johnson 2019). This research highlights the importance of young autis- tic people building the friendships they want to have, rather than being encouraged to have friend- ships like those of young people who are not on the autism spectrum.  **Motivation to make and keep friends.** The well-

people who are not on the autism spectrum.  **Motivation to make and keep friends.** The well- known social motivation theory posits that autistic people have lower levels of social motivation, such that they find social interaction less intrinsi- cally rewarding and do not seek out relationships (Chevallier et al. 2012). Recent work thoroughly critiques this conception of autistic people’s social lives (Jaswal and Akhtar 2019). Indeed, in a study of autistic and non-autistic children’s social

lives (Jaswal and Akhtar 2019). Indeed, in a study of autistic and non-autistic children’s social net- works, Calder et al. (2013) found that it was autistic children’s social motivation that appeared to account for the significant variation in the nature and extent of their friendships. While some young autistic people desperately wanted friends, others had limited social connections but preferred things this way: “I am happy with my life right now. I am not friendly and talkative, but I am not

things this way: “I am happy with my life right now. I am not friendly and talkative, but I am not not friendly. I am somewhere in the middle” (p. 12).  One potential source of individual differences in young autistic people’s motivation for making and keeping friends is gender. Just as there are recognized gender differences in the nature and extent of friendships among people who are not autistic (Aukett et al. 1988; Caldwell and Peplau 1982; De Goede et al. 2009), there is growing evidence

(Aukett et al. 1988; Caldwell and Peplau 1982; De Goede et al. 2009), there is growing evidence for gender differences in the friendships, social skills, and social motivation of young autis- tic people. Research on autistic friendships and social relationships has almost exclusively focused on male participants, largely based around the historical assumption that autism is a mostly male condition and/or the belief that those few girls who received a diagnosis were so rare as to be

condition and/or the belief that those few girls who received a diagnosis were so rare as to be unrepresentative and not worth including (Gould and Ashton-Smith 2011; Haney 2016).  As there is increased recognition of the differ- ences between males and females on the autism spectrum (Lai et al. 2015), understanding the dif- ferences in their friendships, and what causes these differences, is important for being able to support young autistic people to have positive social relationships.

important for being able to support young autistic people to have positive social relationships.  **Gender Differences.** Autistic girls are more likely to have appar- ently typical social development (Bauminger et al. 2010) than autistic boys. This is in part because autistic girls tend to be more motivated toward, and skilled at, imitating the social behav- iors of their peers, such as cooperative and pretend play (Kopp and Gillberg 2011). Autistic girls engage in complex imitation (Hiller et

and pretend play (Kopp and Gillberg 2011). Autistic girls engage in complex imitation (Hiller et al. 2014), have language skills similar to those of non- autistic female peers (Goddard et al. 2014; Kauschke et al. 2016), and are more socially cooperative (Mandy et al. 2012) than autistic boys. Potentially driving these differences, autis- tic girls have consistently been found to have higher levels of social reciprocity and social moti- vation than autistic boys (Head et al. 2014;

higher levels of social reciprocity and social moti- vation than autistic boys (Head et al. 2014; Mandic-Maravic et al. 2015; Sedgewick et al. 2016, 2018).  These skills, combined with higher levels of “camouflaging” behaviors aimed at helping autis- tic girls to hide their social challenges and appear “normal” so they can try to fit in (Dean et al. 2017; Hull et al. 2017; Milner et al. 2019), mean that autistic girls are likely to have very different social experiences to autistic boys. The

mean that autistic girls are likely to have very different social experiences to autistic boys. The social isolation of autistic girls is often less obvious, being more akin to neglect than active rejection (Dean et al. 2014) and means that parents and teachers may not notice and intervene to help them make friends.  There are significant differences in the ways in which adolescent autistic boys and girls spend time with their friends, despite spending similar amounts of time social- izing

and girls spend time with their friends, despite spending similar amounts of time social- izing overall (Kuo et al. 2013). Autistic boys tended to play games with their friends, whereas autistic girls were more likely to chat with theirs. Another study found that autistic girls aged 10–16 years scored significantly higher on the Friendship Questionnaire – with higher scores representing better friendships – than autistic boys and, furthermore, scored similarly to boys who were not autistic (Head

– than autistic boys and, furthermore, scored similarly to boys who were not autistic (Head et al. 2014). This finding was supported by parental reports of the children’s relationships, suggesting that autistic girls have better social skills and higher social motivation than autistic boys. Research suggests that, as girls face similar expectations regardless of diagnostic status, being female may be more important in determin- ing social experiences than being autistic, and this needs to be

may be more important in determin- ing social experiences than being autistic, and this needs to be considered when supporting autistic girls (Carpenter et al. 2019). For example, studies of social motivation and friendships among autis- tic adolescents in both special (Sedgewick et al. 2016) and mainstream (Sedgewick et al. 2018) education settings found gender differences con- sistent with those of non-autistic adolescents. Autistic girls rated their best friendships as closer and more

those of non-autistic adolescents. Autistic girls rated their best friendships as closer and more supportive than autistic boys, at similar levels to non-autistic girls. Those best friendships were also characterized by similar behaviors to non-autistic girls, such as emotional sharing and talking about other people, rather than being focused on shared actions or objects (i.e., games or lessons). Where there were important differences between autistic and non-autistic girls was in the form

Where there were important differences between autistic and non-autistic girls was in the form their friendships took. While non-autistic girls tended to have several best friends plus a wider group of friends and acquaintances, autistic girls had one or two best friends without a wider group, and the best friendships of autistic girls were very intense and could be an all-consuming preoccupation. Nevertheless, autistic girls often spent time with their friends in the same ways as non-autistic

Nevertheless, autistic girls often spent time with their friends in the same ways as non-autistic girls, such as chatting and going to the cinema, and saw their friendships as just as important and positive as non-autistic girls did.  **Supporting Friendships** The research reviewed above demonstrates that a range of factors influence the friendship experi- ences of young autistic people. Any interventions or strategies that seek to support the formation and maintenance of positive friendships

or strategies that seek to support the formation and maintenance of positive friendships for young autistic people must consider shared interests, non-autistic peers’ attitudes toward the young autistic person, and young people’s preferences for making and keeping friends – allowing them to form their own vision of a “good” social life. One key area where specific support is likely to be needed is in navigating the negative aspects of social relationships, both bullying and conflict within

is in navigating the negative aspects of social relationships, both bullying and conflict within friendships, which are all too common for young autistic people.  Young autistic people are more likely to be bullied than their peers due to their social vulner- abilities (Cappadocia et al. 2012; Sofronoff et al. 2011), with up to 94% of young autistic people reporting being bullied (Hebron and Humphrey 2014; van Roekel et al. 2010). Being bullied is associated with being more likely to have mental

2014; van Roekel et al. 2010). Being bullied is associated with being more likely to have mental health issues in young autistic people, though those with good friends and higher self-esteem are somewhat protected (Cook et al. 2016).  Although there is a wealth of work on bullying of young autistic people (for review, see Hong and Espelage 2012), little research has been conducted on the impact of conflict within their friendships and peer relationships. These behaviors can have negative impacts

conflict within their friendships and peer relationships. These behaviors can have negative impacts similar to those of more overt bullying but, critically, take place within relation- ships typically categorized as “friendships.” This categorical (friends, who are usually nice to you) and behavioral (someone being unpleasant or bul- lying) mismatch can lead to difficulties for any adolescent who must try to make space for mean behaviors within the concept of a “friend” but may be especially

must try to make space for mean behaviors within the concept of a “friend” but may be especially puzzling for teenagers on the autism spectrum. Indeed, autistic adolescents can often have a “fixed” and “active” definition of friend- ship, focused on doing things with someone – “someone you hang out with” (Bauminger and Kasari 2000; Calder et al. 2013) – rather than emotional closeness, which may leave autistic adolescents vulnerable to social manipulation.  Importantly, this fixed definition of

leave autistic adolescents vulnerable to social manipulation.  Importantly, this fixed definition of friendship can also lead to fixed ideas about what represents a breach of that friendship. One study showed that young autistic people view “betrayal” as the most severe transgression in a friendship (Bottema- Beutel et al. 2018). The perspective-taking diffi- culties often experienced by young autistic people might mean that they can misinterpret the actions of others as a transgression when they

people might mean that they can misinterpret the actions of others as a transgression when they were not intended as such (van Roekel et al. 2010). They may then react more easily (Mazefsky et al. 2013) and in a more emotionally extreme manner than non-autistic young people would (Gomez and Baird 2005; Volker et al. 2010). They are also less likely to forgive a friend who upsets them (Rogé and Mullet 2011) due to a sense of having been done an injustice. This emotional reaction, however, is

Mullet 2011) due to a sense of having been done an injustice. This emotional reaction, however, is likely to result in further teasing from peers rather than reducing the bullying.  Just as young autistic people generally are more likely to be bullied than non-autistic young people, autistic girls are more likely to be bullied than autistic boys (Sedgewick et al. 2018). The challenges of friendship formation and mainte- nance may be especially significant for autistic girls, who are more likely

formation and mainte- nance may be especially significant for autistic girls, who are more likely to experience relational conflict than autistic boys, just as non-autistic girls experience more relational conflict than non- autistic boys (Bowie 2007). In light of these gen- der differences, research has started to explore how autistic girls experience and manage rela- tional conflict. Several studies have found that autistic girls experience high levels of this conflict and often fall out with

have found that autistic girls experience high levels of this conflict and often fall out with friends as a result of it (Milner et al. 2019; Sedgewick et al. 2018). One study found that autistic girls are more likely to have an “all or nothing” response to conflict with a friend, seeing it either as entirely their fault and therefore entirely their responsibility to ‘fix’ or as entirely the other person’s fault and entirely for them to resolve (Sedgewick et al. 2018). Other work has shown that

person’s fault and entirely for them to resolve (Sedgewick et al. 2018). Other work has shown that autistic girls do have conflict resolution strategies but can struggle to predict the expectations of their peers and so face difficulties effectively deploying these approaches (Vine Foggo and Webster 2017).  Indeed, research has shown that difficulties with developing and using social problem-solving strategies are common for young autistic people (Hochhauser et al. 2015), even when they are highly

strategies are common for young autistic people (Hochhauser et al. 2015), even when they are highly motivated to repair the damage and want to maintain the friendship.  Future Directions There is a huge amount still to learn about friend- ships among young autistic people. There is a need for future research to examine the experi- ences of those young people who are non-binary and transgender; on the ways that social relation- ships change over time, especially during times of life transition;

the ways that social relation- ships change over time, especially during times of life transition; on the reciprocal influences of men- tal health and friendships on the well-being of young autistic people; and on the differences between mixed autistic/non-autistic and non- mixed friendships.  The friendships young autistic people choose to make may not look exactly like those of non- autistic young people. But they are valid and genuine, and appear to have similar beneficial long-term impacts as

people. But they are valid and genuine, and appear to have similar beneficial long-term impacts as all friendships. Understand- ing that these friendships are possible for young autistic people, and that they can enjoy these friendships on their own terms, is a critically important message, which should be shared with young people, their families, and the people supporting them.  The Program for the Education and Enrichment of Relational Skills (PEERS; Laugeson et al. 2014) – a 16-week program

the Education and Enrichment of Relational Skills (PEERS; Laugeson et al. 2014) – a 16-week program of lesson plans to help autistic young people develop social skills and practice social interaction Social Stories (Gray 1994) – a manualized approach to designing individualized stories to help autistic young people predict and practice social interactions The Hidden Curriculum (Myles, Trautman and Schelvan 2004) – a book that gives practical tips and tutorials for teachers and parents to

and Schelvan 2004) – a book that gives practical tips and tutorials for teachers and parents to support autistic young people in learning unwritten social rules The Secret Agent Society (Beaumont et al. 2015) – a social-emotional skills training program for school- aged autistic children that includes child group sessi ons, parent workshops, and teacher tip sheets, home missions, using a multilevel computer game and a system to reward and monitor progress at home and school The Transporters

computer game and a system to reward and monitor progress at home and school The Transporters (Golan et al. 2010) – an animated series which aims to teach autistic young children about reading facial expressions and emotions disp layed on the face Girls Night Out (Jamison and Schuttler 2017) – a social skills and self-care program designed with autistic adolescent girls in mind, aimed at helping them understand and engage with their peers more successfully  Social Pragmatic Communication

them understand and engage with their peers more successfully  Social Pragmatic Communication Disorder  Social Responsiveness Scale  John N. Constantino Department of Psychiatry, Washington University School of Medicine, St. Louis, MO, USA  Synonyms SRS  Abbreviations AUC Area under curve ADHD Attention deficit hyperactivity disorder ADI-r Autism diagnostic interview-revised ADOS Autism diagnostic observation scale ASD Autism spectrum disorder BPVS British picture vocabulary scale CBCL Child

observation scale ASD Autism spectrum disorder BPVS British picture vocabulary scale CBCL Child behavior checklist CCC Children’s communication checklist OCD Obsessive compulsive disorder PDD-NOS Pervasive developmental disorders-not otherwise specified ROC Receiver operating characteristics SCDC Social and communication disorders checklist SCQ Social communication questionnaire VABS Vineland adaptive behavior scales  Description The Social Responsiveness Scale (SRS) is a 65-item rating scale

behavior scales  Description The Social Responsiveness Scale (SRS) is a 65-item rating scale that measures the severity of autistic symptomatology as a quantitative trait, among children clinically affected by autism spec- trum conditions as well as among children in the general population. It is particularly useful for characterizing milder autistic syndromes that lie at the boundary between the normal population distribution and clinical-level affectation. The SRS can be completed by a

the normal population distribution and clinical-level affectation. The SRS can be completed by a parent, a teacher, a spouse (in the case of the adult version of the SRS), or another adult informant. The validity of self-report is still under study. The SRS involves ratings of children in their natural social contexts and reflects what has been consistently observed over weeks or months of time rather than in a single clinical or laboratory observation. In this way, it capitalizes on both direct

than in a single clinical or laboratory observation. In this way, it capitalizes on both direct observation and on the accumulated history of behaviors observed by the informant over time. The SRS generates quantitative scores for the severity of autistic traits and symptoms, and distinguishes Autism Spec- trum Disorder (ASD) from other psychiatric con- ditions (Constantino et al. 2000). Norms have been published by gender and rater type (parent versus teacher) in order to standardize ratings,

been published by gender and rater type (parent versus teacher) in order to standardize ratings, which otherwise differ as a function of these parameters. SRS scores are highly heritable (Constantino and Todd 2003), stable over time (Constantino et al. 2009), exhibit high inter-rater reliability (Constantino et al. 2007a), are continu- ously distributed in the general population (Constantino and Todd 2003), are nonsignifi- cantly correlated with IQ among children representing the normal range of

2003), are nonsignifi- cantly correlated with IQ among children representing the normal range of IQ in the general population (Constantino et al. 2007a), and exhibit a unitary factor structure (Constantino et al. 2004), which supports the use of a single index score as a quantitative measure of autistic severity. SRS scores greater than 75 T (98.8th percentile) indicate a level of autistic social impairment that is generally highly clinically significant.  Historical Background Over the course of

that is generally highly clinically significant.  Historical Background Over the course of some 25 studies involving over 10,000 individuals (including Constantino et al. 2006, 2007a, 2007b, 2009; Constantino and Gruber 2005; Constantino et al. 2003b; Constantino and Todd 2000; Lee et al. 2010; Levitt and Campbell 2009; Pine et al. 2006; Virkud et al. 2009), research involving the SRS has yielded information about the distribution of autistic traits and symptoms in children and fam- ilies

information about the distribution of autistic traits and symptoms in children and fam- ilies affected by autism, as well as children and families in the general population. Complemen- tary research involving an array of other quantita- tive rating scales has converged with findings from studies involving the SRS in demonstrating that quantitative autistic traits exhibit a continuous distribution in nature (from very mild to very severe, see Fig. 1 panel A below) and are substan- tially

in nature (from very mild to very severe, see Fig. 1 panel A below) and are substan- tially heritable (estimates on the order of 0.60–0.80). The traits and symptoms captured by the SRS are extremely stable over time (5-year test-retest correlations on the order of 0.60–0.70 in clinical samples and 0.70–0.80 in nonclinical populations, as depicted in panel B below), yet capable of fluctuating within individuals over time and in response to intervention. The SRS is currently in use in a broad

individuals over time and in response to intervention. The SRS is currently in use in a broad range of settings, including schools, clinical services, and research programs. It offers the capability of feasible and reliable quantitative characterization of core com- ponents of the autistic syndrome across infor- mants and across environmental contexts, and has been translated into over 20 foreign languages at the time of this writing.  Psychometric Data Each version of the SRS can be completed

languages at the time of this writing.  Psychometric Data Each version of the SRS can be completed in 15 min and generates both scale scores for specific symptom domains relevant to the characterization and treatment of autistic syndromes, as well as a singular total score for autistic social impairment, empirically validated via factor, cluster, and latent class analysis (Constantino et al. 2004, 2007a). Higher total scores on the SRS indicate greater severity of social impairment; and

2004, 2007a). Higher total scores on the SRS indicate greater severity of social impairment; and inter-rater reli- ability is high (parent-teacher correlation 0.72, n ¼ 1,200). The SRS exhibits nonsignificant cor- relations with IQ, and substantial agreement with the Autism Diagnostic Interview (ADI-r) and the Autism Diagnostic Observation Scale (ADOS) (Constantino et al. 2003, Constantino et al. 2004, Constantino et al. 2007a; Lee et al. 2010). Parent- report scores on the SRS distinguish

al. 2004, Constantino et al. 2007a; Lee et al. 2010). Parent- report scores on the SRS distinguish children with ASDs (including Autistic Disorder, Asperger Dis- order, and Pervasive Developmental Disorders [PDD-NOS]) from those with other child psychi- atric conditions (Constantino et al. 2004; Constantino et al. 2000; Constantino et al. 2007b; Constantino and Gruber 2005). Autistic traits and symptoms measured by the SRS are continuously distributed not only in clinical populations but in the

measured by the SRS are continuously distributed not only in clinical populations but in the general population (Constantino and Todd 2003). Furthermore, traits measured by the SRS aggregate in the male first- degree relatives of subjects with ASD in multiple- incidence families (Constantino et al. 2006; Virkud et al. 2009). In addition, there is evidence from molecular genetic studies that SRS scores map to specific autism susceptibility loci (Duvall et al. 2007; Levitt and Campbell 2009; Coon

map to specific autism susceptibility loci (Duvall et al. 2007; Levitt and Campbell 2009; Coon et al. 2010).  Internal Consistency Internal consistency is a form of reliability that can be estimated from a single administration. Studies using the SRS have reported very high estimates. The earliest study on the SRS (Constantino et al. 2000) assessed internal consis- tency in regular education children aged 4–7 years (N ¼ 197). An alpha .97 was obtained. In a report on a clinical sample using the

aged 4–7 years (N ¼ 197). An alpha .97 was obtained. In a report on a clinical sample using the German translation, Bolte et al. (2011) obtained an alpha .94 in a mixed clinical group (N ¼ 255) and alpha .96 in an ASD group (N ¼ 148).  Retest Reliability/Temporal Stability Retest reliability and temporal stability are closely related psychometric constructs. While the actual study principle is the same – an individual is asked to fill in an instrument twice so that results can be compared after

same – an individual is asked to fill in an instrument twice so that results can be compared after time delay – the meaning of the result changes substantially when the two proce- dures are separated over increasingly long time periods. When the interval is short, say a few weeks to a few months, the study is said to address test-retest reliability and findings are attributed narrowly to the reliability of the instrument. When the interval is longer however, say on the order of 6 months to

reliability of the instrument. When the interval is longer however, say on the order of 6 months to several years, then the study is said to address temporal stability and the results are attributed to the validity of the underlying construct (autism in the case of the SRS) and of the instrument.  Research interest has focused on longer inter- vals in clinical populations. It is a testimony to both the high validity of the autism construct and to the SRS in measuring that construct that corre-

the high validity of the autism construct and to the SRS in measuring that construct that corre- lations have been very high. Constantino et al. (2000) reported on a clinical group (N ¼ 30) with a retest interval averaging 137 days and found a correlation r ¼ .88. Bolte et al. (2009) assessed a clinical group (N ¼ 49), with a 3–6 month retest interval and found a retest cor- relation of r ¼.95 was obtained. Constantino et al. (2009) tested 95 male twin pairs ASD affected and 95 males typically

obtained. Constantino et al. (2009) tested 95 male twin pairs ASD affected and 95 males typically developing (total N ¼ 285) longitudinally over a 5-year period and found that retest correlations maintained around r ¼ .90 in both groups, as shown in Fig. 1 Panel B. In general, the reliability of an instrument is seen as a strong constraint on its validity. Thus, the evidence of longer interval construct stability above, with correlations on the order of 0.80–0.90, tends to obviate the need to

stability above, with correlations on the order of 0.80–0.90, tends to obviate the need to put resources into documenting short interval retest reliability. Bolte et al. (2008) did evaluate retest reliability in conjunction with the development of the German edition, but only in the normative group. With a retest interval ranging from 3 weeks to 4 months, they found retest reliability was r ¼ .80 for mothers and r ¼ .72 for fathers.  Inter-rater Reliability/Convergent Validity Inter-rater

¼ .80 for mothers and r ¼ .72 for fathers.  Inter-rater Reliability/Convergent Validity Inter-rater report comparisons serve two func- tions. In a narrow sense they are an aspect of reliability, since they involve applying the same items to the same child. Yet inter-rater compari- sons also go beyond that to provide a broader aspect of validity, since they involve passing the items through different experience bases. Thus, mother and father, even while living in the same home and sharing many

experience bases. Thus, mother and father, even while living in the same home and sharing many family experiences, do each have separate personal experiences with a child and, moreover, a unique prior personal his- tory that can influence how each will interpret the meaning of the 65 test items. And this sense of difference in background, experience, and per- spective expands even more when a parent report is compared to that of a teacher; for one a teacher and a parent have virtually no

a parent report is compared to that of a teacher; for one a teacher and a parent have virtually no overlapping obser- vations of a child’s behavior and for another a teacher, while seeing the child in a more limited setting than the parent, can draw on professional training and direct experience with scores and even hundreds of other children when judging the child’s behavior. Despite these differences in perspective, stud- ies reporting on different observers have found highly concordant

differences in perspective, stud- ies reporting on different observers have found highly concordant reports. With regard to mother-father inter-rater agreement, Constantino et al. (2003a) collected mother and father reports in a sample of ASD-diagnosed individuals (N ¼ 61). They found mother-father reports cor- related r ¼ .91. Bolte et al. (2008), using the German edition, reported on 527 mixed clinical cases (160 with ASDs) and also found mother- father reports correlated r ¼ .91. In the

clinical cases (160 with ASDs) and also found mother- father reports correlated r ¼ .91. In the normative sample, Bolte et al. (2009) obtained a mother- father correlation r ¼ .61. Prior comments regard- ing results in normative or other less-affected groups apply again here. Parent reports have also been compared to teacher reports in clinical samples. Regarding parent-teacher comparisons, Constantino et al. (2003a) found mother-teacher reports correlating r ¼ .82 and father-teacher reports

et al. (2003a) found mother-teacher reports correlating r ¼ .82 and father-teacher reports correlating r ¼.75 (both N ¼ 61). In a later study Constantino et al. (2007a) compared teacher- and parent-report SRS scores in a larger sample (N ¼ 577) of clin- ically referred children and found parent-teacher reports correlated r ¼ .72. As noted in the intro- ductory comments, differences in experience bases are much larger between teachers and par- ents than between parents. These finding on

bases are much larger between teachers and par- ents than between parents. These finding on parent-teacher comparisons are also highly indic- ative of strong reliability and validity.  Comparisons with Other Instruments: Concurrent Validation Two broad issues can be addressed from reports where the SRS has been used with other instru- ments. Of these, convergent validity compares the instrument to others that have the same focal purpose. For the SRS, this involves comparisons with other

to others that have the same focal purpose. For the SRS, this involves comparisons with other instruments that are designed to evalu- ate symptoms and behaviors on the Autism Spec- trum. In these comparisons, higher correlations are desirable. In contrast, divergent/discriminant validity addresses the instrument’s performance in contexts where a broader variety of symptoms and behavior problems need to be addressed. For the SRS, this could involve comparison to instruments that assess other

need to be addressed. For the SRS, this could involve comparison to instruments that assess other commonly identified psychological disorders and behavioral prob- lems – for example, behavioral expressions of internalizing problems of anxiety, depression, and Obsessive Compulsive Disorder (OCD) or behavioral expressions of externalizing problems such as Attention Deficit Hyperactivity Disorder (ADHD), conduct disorders, and Bipolar disor- der – or those that assess less specifically linked

(ADHD), conduct disorders, and Bipolar disor- der – or those that assess less specifically linked problems such as developmental delay. In these comparisons, moderate- to lower- or even zero- order correlations are desirable, demonstrating that the SRS explains variance that is unique to the social behavior associated with ASDs and not strongly overlapping with that due to behavioral difficulties associated with other disorders and identified by other instruments.  **Convergent Validity** **Parent

with other disorders and identified by other instruments.  **Convergent Validity** **Parent and Teacher Report Behavior Assess- ments.** Comparison with other ASD-directed mea-

sures have largely involved instruments using a similar approach to assessment: multiple item objective questionnaires with a multipoint Likert-scale or a true-false response format that is completed by informants familiar with the child’s behavior in natural living contexts such as parents and teachers. Good agreement has been reported with the several instruments that have been investigated.  The most widely investigated comparison has been with the Social Communication Question- naire (SCQ;

most widely investigated comparison has been with the Social Communication Question- naire (SCQ; Rutter et al. 2003), an instrument that uses a true-false response format with 40 items derived from the ADI-r. Findings with the SRS have been relatively consistent. In studies with mixed clinical samples as cited earlier, Charman et al. (2007) report a correlation r ¼ .68 (n ¼ 119); Bolte et al. (2008) report r ¼ .58 (n ¼ 107). In addition, also in a mixed clinical sample, (Pine et al. 2008) found

report r ¼ .58 (n ¼ 107). In addition, also in a mixed clinical sample, (Pine et al. 2008) found r ¼ .65 (n ¼ 352) and in a small sample of children affected by epilepsy Granader et al. (2010) report r ¼ .61 (n ¼ 21). A slightly lower value was reported by Bolte et al. (2011), r ¼ .50 (n ¼ 480), in a sample that included typically developing as well as clinical subjects.  There have also been several studies correlat- ing SRS scores with those from the Children’s Communication Checklist (CCC;

studies correlat- ing SRS scores with those from the Children’s Communication Checklist (CCC; Bishop 1998), a 70-item instrument with a Likert scale response format. Pine et al. (2008) reports correlations or r ¼  .49 and  .72 with the two ASD-focused (and positively valanced) subscales. Similarly, Charman et al. (2007) report a SRS to CCC cor- relation r ¼  .75.  The SRS has also been compared to the Social and Communication Disorders Checklist (SCDC, (Skuse et al. 2005)) a brief, 12-item

to the Social and Communication Disorders Checklist (SCDC, (Skuse et al. 2005)) a brief, 12-item scale using a 3-point Likert scale response format. Using Ger- man translations, Bolte et al. (2011) found the instruments moderately correlated r ¼ .49.  **The ADI-r and the ADOS.** The SRS has also been compared to instruments that are less similar in design, in particular the Autism Diagnostic Interview, revised (ADI-r; Lord et al. 1994) and the Autism Diagnostic Observation Schedule (ADOS; Lord

revised (ADI-r; Lord et al. 1994) and the Autism Diagnostic Observation Schedule (ADOS; Lord et al. 2000).  The design characteristics of these instruments are quite different from that of the SRS and other behavioral parent and teacher reports cited in the previous section. The ADI-r is a long structured psychiatric interview from which a subset of ques- tions are selected and coded; the ADOS is a struc- tured observation of behavior conducted by a trained professional under standard

ADOS is a struc- tured observation of behavior conducted by a trained professional under standard conditions from which pre-identified behavior is identified and coded. Both instruments were designed to facilitate categorical, diagnostic decision making and, consequently, do not produce the same kind of dimensional results produced by the objective questionnaires. It has long been recognized that differences in method tend to produce evidence of validity at lower levels of correlation (e.g.,

differences in method tend to produce evidence of validity at lower levels of correlation (e.g., Camp- bell and Fiske 1959). Given the differences, results provided clear support for the validity of the SRS.  ADI-r results include “domain scores,” sums of coded item subsets. Constantino et al. (2003a) reported an early investigation of SRS validity, comparing SRS to ADI-r lifetime scores in a sam- ple ASD-diagnosed individuals (N ¼ 61). We note that ADI-r domain scores characterize level of

sam- ple ASD-diagnosed individuals (N ¼ 61). We note that ADI-r domain scores characterize level of severity around the age of 4 years, at a relative peak in manifestations of autistic symptomatol- ogy from the standpoint of developmental history. Despite this fundamental difference between the SRS (which measures current dysfunction) and the ADI-r (which indexes historic symptomatol- ogy in early childhood), correlations between parent-report SRS scores and ADI-r domain scores ranged from .65

childhood), correlations between parent-report SRS scores and ADI-r domain scores ranged from .65 to .77 for mother reports, from .52 to .70 for teacher reports, and from .60 to .74 for father reports. In a subsequent report on a larger sample, somewhat lower, though highly statistically significant correlations were reported between SRS Parent reports and ADI-r domain scores (range of r ¼ .31–.36) and SRS Teacher reports (range of r ¼ .26–.40) (Constantino et al. 2007a). These correlations were

and SRS Teacher reports (range of r ¼ .26–.40) (Constantino et al. 2007a). These correlations were on the order of what was observed for correlations between ADI-r and ADOS domain scores. In the study associated with the development of the German edition, Bolte et al. (2008) collected 133 clinical cases and report more specifically on parent reports for the separate domains: Social Interac- tion Domain score r ¼ .46, Communication Domain Score r ¼ .40, Stereotypic Behavior Domain score r ¼ .38.

score r ¼ .46, Communication Domain Score r ¼ .40, Stereotypic Behavior Domain score r ¼ .38. Charman et al. (2007) used an ADI-r results that combined scores across domains and found a correlation r ¼ .59. As noted in the introductory paragraph, the ADI-r was designed to facilitate categorical analyses and its brief domain scores do not provide a strong basis for correlational analyses, for example, Bolte et al. (2009) used standard adjustments to compensate for attenuated ranges in short

example, Bolte et al. (2009) used standard adjustments to compensate for attenuated ranges in short scales. The rela- tively stronger finding in the Charman et al. (2007) study may in part reflect the combination of domains into a single, more dimensionalized score.  The same sets of investigators produced paral- lel findings on comparisons to the ADOS. Constantino et al. (2007a) found ADOS domain scores correlated with SRS Parent reports (range of r ¼ .37 to .58) and SRS Teacher reports (range of

correlated with SRS Parent reports (range of r ¼ .37 to .58) and SRS Teacher reports (range of r ¼ .15–.43). The Bolte et al. (2008) study reports Communications/Social Deficits score r ¼ .35. In a subsequent study Bolte et al. (2011) found correlations in the r ¼ .32–.35 range with the ADOS Domain scores. Again, using a single combined domain score, Charman et al. (2007) found an SRS to ADOS correlation r ¼ .48. The earlier comments regarding brief domain scores and Charman et al.’s use of a

r ¼ .48. The earlier comments regarding brief domain scores and Charman et al.’s use of a combined domain score also apply here.  **Divergent/Discriminant Validity** The task of differentiating diagnostic groups is addressed by studies cited in a later section. This section provides a more general sense of overall validity from comparing correlations with differ- ent instruments and their scales. The comparison scales reported here are directed at a wider variety of mental health problems and

The comparison scales reported here are directed at a wider variety of mental health problems and diagnoses, some of which may have overlapping symptoms with ASD and others thought or known to have no systematic relation to ASDs. Reported correla- tions will reflect a validation of the SRS by show- ing moderate- to low- or zero-order correlations. As noted earlier, differences in methods can have an impact on correlational evidence (e.g., Campbell and Fiske 1959). Most of the reports in the

an impact on correlational evidence (e.g., Campbell and Fiske 1959). Most of the reports in the following discussion involve parent and teacher behavioral reports, similar in design to convergent measures like the SCQ, CCC, and SCDC. The appropriate comparison in this sec- tion is with those reported on the parent and teacher report behavioral measures in the previous section.  Studies using the Child Behavior Checklist (CBCL; [Achenbach and Ruffle 2000]) support the view that the SRS is more

Child Behavior Checklist (CBCL; [Achenbach and Ruffle 2000]) support the view that the SRS is more sensitive to behav- iors that can sometimes be associated with ASD- related problems, less sensitive to behavior sel- dom seen in ASDs, and – perhaps most critically – sufficiently independent of the CBCL to indicate sensitivity to behavioral problems not assessed by the CBCL. Two studies report correlations between the SRS and CBCL in clinical samples, with Constantino et al. (2000) reporting on 84

between the SRS and CBCL in clinical samples, with Constantino et al. (2000) reporting on 84 clin- ical cases and Bolte et al. (2008) reporting on 119 clinical cases from the German validation studies. Despite the differences in location and language, the findings were quite parallel. Both studies found moderate correlations for the SRS with CBCL subscales that have some overlap with the kinds of symptoms seen with ASDs: Social Problems, Thought Problems, and Attention Problems (correlations

of symptoms seen with ASDs: Social Problems, Thought Problems, and Attention Problems (correlations range r ¼ .48 to .64). As expected, results were somewhat mixed but generally lower for correlation with CBCL sub- scales directed at less related behavior: With- drawn, Delinquent Behavior, and Aggressive Behavior (correlations range r ¼ .34–.54). Both studies found zero-order correlations for the SRS with the CBCL Somatic Complaints subscale (r ¼ .11 and .12 ns). In another study involving a

SRS with the CBCL Somatic Complaints subscale (r ¼ .11 and .12 ns). In another study involving a general population twin sample, Constantino et al. (2003b) examined overlap in the constructs cap- tured by the scales, suggesting about 16% total shared variance.  Using the Vineland Adaptive Behavior Scales (VABS; Sparrow et al. 1984) studies have reported on the relation of development to SRS scores. Charman et al. (2007) report a correlation of  44 for the positively valenced composite VABS

Charman et al. (2007) report a correlation of  44 for the positively valenced composite VABS scores with the SRS and Bolte et al. (2008) found a correlation r ¼  .36 for the com- posite correlations ranging from  .34 to  .43 for the subscales. This level of correlation appears reasonable for a developmental disorder like ASD.  Regarding narrower cognitive ability, Charman et al. (2007) reported no significant cor- relation of the SRS to the British Picture Vocabu- lary Scale (BPVS; Dunn et al.

no significant cor- relation of the SRS to the British Picture Vocabu- lary Scale (BPVS; Dunn et al. 1997).  Clinical Uses The first question for a clinical assessment is whether affected individuals show scores elevated enough for the assessment to have clinical utility. Independent reports providing information on both typically developing children with those diagnosed as autistic have consistently shown a statistically significant and clinically meaningful separation. Children not affected by

shown a statistically significant and clinically meaningful separation. Children not affected by ASD or any other disorder are typically reported to have SRS Total Scores in the narrow range from 0 to 35. This is true in studies where children have been drawn to be representative of typically developing populations (Bolte et al. 2008, 2011; Coon et al. 2010) and in studies where matched controls have been drawn (Reiersen et al. 2007; Pine et al. 2008). In contrast, results for groups of children

been drawn (Reiersen et al. 2007; Pine et al. 2008). In contrast, results for groups of children with PDD-NOS, ASD, or autistic disorder find SRS Total Score group means in the range 86–116 (Charman et al. 2007; Constantino et al. 2000; Coon et al. 2010; Kalb et al. 2010). Even given the rather large standard deviations reported for autistic groups (ranging 27–33), the findings indicate a separation of two standard deviations or more. These differences are substantial and have a clear practical

of two standard deviations or more. These differences are substantial and have a clear practical utility.  Clear and useful separation can also be seen when contrasting autism with other non-autistic diagnoses. Studies that have presented SRS scores for mixed or specific non-ASD diagnosis clinical samples have reported group SRS Total Score means in the range 40–75, that is, consistently higher than those reported for typically develop- ing groups and lower than those reported for

higher than those reported for typically develop- ing groups and lower than those reported for autism-affected groups (Bolte et al. 2008, 2011; Charman et al. 2007; Constantino et al. 2000; Pine et al. 2008; Puleo and Kendall 2011; Reiersen et al. 2007; Towbin et al. 2005). It must be noted that studies will produce different results depending on the specific symptoms associated with the contrast diagnosis and on the severity of clinically affected subjects who are ascertained or recruited.

diagnosis and on the severity of clinically affected subjects who are ascertained or recruited.  **Screening and Receiver Operating Characteristics (ROC) Reports** The SRS has had a number of clinical applica- tions: qualifying subjects for research studies, providing support for clinical diagnoses, assess- ment of treatment effects, etc. Wide international concern about autism, however, has also led to an interest in developing and applying screening tools, and the SRS has been studied for

led to an interest in developing and applying screening tools, and the SRS has been studied for this purpose. These studies evaluate an instrument’s sen- sitivity (the proportion of actually affected individuals who are correctly identified) and spec- ificity (the proportion of nonaffected individuals who are correctly identified). In general, there is a trade-off so that increasing specificity degrades sensitivity and vice versa. The studies reported here reflect the complex- ity of the screening

sensitivity and vice versa. The studies reported here reflect the complex- ity of the screening task (e.g., differing contrast diagnoses, population pools, comparison instru- ments, and cut points that may favor sensitivity in some cases and specificity in others). Even with the variation, however, the findings to be reported indicate that the SRS has a useful power to prop- erly identify affected children and to accurately discriminate children with ASD conditions from typically developing

children and to accurately discriminate children with ASD conditions from typically developing children and also from those with varied non-ASD disorders. For a psychiatric sample of 133 children with ASD diagnoses and 126 mixed non-ASD diagnoses (sample described in Constantino et al. (2004)), a ROC analysis was reported. With the standard recommended research cutoff of 75, sensitivity was reported as .85 and specificity as .75. Charman et al. (2007) reported on a sample of children previ-

as .85 and specificity as .75. Charman et al. (2007) reported on a sample of children previ- ously identified with developmental or special education risk factors, and contrasted 49 children with confirmed ASD diagnoses with 70 children with confirmed non-ASD diagnoses. Under these conditions, Area Under Curve (AUC) was .77, sensitivity was .78, and specificity was .67. A larger and more diverse study by using the German translation involved a sample of 480 chil- dren, including 148 with ASD

study by using the German translation involved a sample of 480 chil- dren, including 148 with ASD diagnoses, 255 with non-ASD clinical diagnoses, and 77 typ- ically developing children (Bolte et al. 2011). Results were reported based on the recommended research cutoff for the SRS of 75 that was used in the prior two reports. Contrasting ASD cases with typically developing children they report AUC ¼ .98 with sensitivity ¼ .80, specificity ¼ 1.0. Contrasting ASD cases with the non-ASD clinical

AUC ¼ .98 with sensitivity ¼ .80, specificity ¼ 1.0. Contrasting ASD cases with the non-ASD clinical group, they report AUC ¼ .81 with sen- sitivity ¼ .80, specificity ¼ .69. Contrasting ASD with a clinical sub-sample of ADHD affected children, they report AUC ¼ .86 with sensitivity ¼ .80, specificity ¼ .78. And finally, contrasting ASD with a clinical sub-sample of children with anxiety diagnoses, they report AUC ¼ .82 with sensitivity ¼ .81, specificity ¼ .74. The findings across the three studies

report AUC ¼ .82 with sensitivity ¼ .81, specificity ¼ .74. The findings across the three studies and groups are fairly consistent with regard to sensi- tivity, ranging from .78 to .85 and clustering around .80. With regard to specificity, findings are more varied and depend on the nature of the contrast group, ranging from .69 to 1.0, with per- haps .75 as an adequate single estimate in clinical settings where there are mixed diagnoses in the contrast group. Co-equal high rates, as seen for the

where there are mixed diagnoses in the contrast group. Co-equal high rates, as seen for the SRS, are generally desirable, but there can be applications where favoring one or the other many be preferred, for example, an instrument with higher sensitivity for use in early, broad population studies or one with higher specificity for use in aiding differential clinical diagnosis. The SRS is highly versatile in this sense; given the fact that it is fundamentally a quantitative trait measure, users

in this sense; given the fact that it is fundamentally a quantitative trait measure, users can adjust the cutoff values used for screening to optimize sensitivity or positive predictive value.  The results above are reported on the conven- tional procedure, where a single administration of an instrument is used to identify children with potential problems. The SRS has two features that make it relatively easy to add to screening power. As a behavioral report, it does not require clinician time

easy to add to screening power. As a behavioral report, it does not require clinician time to conduct the assessment and as a report with several forms, it is relatively easy to collect more than one score on a child, for exam- ple, a parent and a teacher or a mother and a father. Taking advantage of these features, Constantino et al. (2007a) compared teacher- and parent-report SRS scores in a large sample (N ¼ 577) of clini- cally referred children. A PDD-affected sample (n ¼ 271) was compared

sample (N ¼ 577) of clini- cally referred children. A PDD-affected sample (n ¼ 271) was compared to nonaffected siblings (N ¼ 119). Parent and teacher forms were both administered and the screening power reported when both reports on a given child were elevated to the diagnostic cut point. Under these conditions the ROC analyses showed an AUC ¼ .95 with sensitivity 0.75 and specificity 0.96.  **Results in Other Clinical and Behavioral Research** While the SRS has the identification and charac-

in Other Clinical and Behavioral Research** While the SRS has the identification and charac- terization of ASDs as its central purpose, it has been used in studies of other behavior difficulties and clinical diagnoses. In all of the studies reported below, children with non-ASD clinical diagnoses are seen to have clinically relevant weakness in the kinds of social behavior assessed by the SRS. As noted by one of the teams (Pine et al. 2008), this can raise the question of whether ASDs are being

noted by one of the teams (Pine et al. 2008), this can raise the question of whether ASDs are being under-assessed when there are comorbid conditions. More broadly, however, all of the findings show that the behavioral and social problems associated with ASD can have rele- vance in other areas. The SRS measures these problems in a way that is sensitive to their presence, differentiated in elevation from that seen in actual ASD diagnoses, and may be highly sensitive to treatment effects (Puleo

from that seen in actual ASD diagnoses, and may be highly sensitive to treatment effects (Puleo and Kendall 2011).  **Heritability/Genetic Epidemiology** In an extensive line of research employing the SRS in large genetically informative samples of twins (Constantino and Todd 2000, 2005; Ho et al. 2005), siblings (Constantino et al. 2006; Schwichtenberg et al. 2010), and families (Virkud et al. 2009), representing both the general population Constantino and Todd (2003) and clin- ically affected

representing both the general population Constantino and Todd (2003) and clin- ically affected families (Constantino et al. 2010), including studies involving molecular genetic markers (Duvall et al. 2007; Campbell et al. 2010; Coon et al. 2010), it has been shown that the quantitative traits measured by the SRS are highly heritable across the entire range of severity in which they occur in nature (from mild to severe), and that subclinical autistic traits charac- terized by mild elevations SRS

(from mild to severe), and that subclinical autistic traits charac- terized by mild elevations SRS scores constitute candidate endophenotypes, that is, genetically related to the cause(s) of autism itself.  **Brain Imaging** Several neuroimaging studies have elucidated brain imaging phenotypes that relate closely to variation in SRS scores, both in the general pop- ulation and in clinically affected samples (Assaf et al. 2010; Di Martino et al. 2009; Kaiser et al. 2010; Paul et al. 2010).

samples (Assaf et al. 2010; Di Martino et al. 2009; Kaiser et al. 2010; Paul et al. 2010).  **Longitudinal Course** Constantino et al. (2009) tested N ¼ 285 (95 male twin pairs ASD affected and 95 male typical developing) longitudinally over a 5-year period, and found that test retest correlations maintained around r ¼ 90 in both groups. Indi- vidual trajectories varied as a function of sever- ity at baseline. Moderate improvement with age was noted, underscoring the instrument’s poten- tial

ity at baseline. Moderate improvement with age was noted, underscoring the instrument’s poten- tial utility for ascertaining incremental response to intervention. Ongoing research on the longer- term longitudinal course of autistic traits and symptoms among clinically affected children and their siblings is underway in NIH-funded research.  Social Scientist  Social Scripts  Social Security Amendments of 1965 (or “Medicare Act of 1965” and/or the “Medicaid Act of 1965”)  Annemarie M. Kelly and

of 1965 (or “Medicare Act of 1965” and/or the “Medicaid Act of 1965”)  Annemarie M. Kelly and Christina N. Marsack- Topolewski College of Health and Human Services, Eastern Michigan University, Ypsilanti, MI, USA  Definition The Social Security Amendments of 1965 (the “Amendments”) are the milestone laws that established the U.S. Medicare and Medicaid programs (Pub. L. No. 89–97). Collectively, these federal statutes have four major provi- sions: (1) a hospital insurance program for qual-

these federal statutes have four major provi- sions: (1) a hospital insurance program for qual- ifying adults aged 65 and older (Medicare Part A, Title XVIII); (2) a medical insurance program to offset out-of-pocket healthcare costs for qualifying adults aged 65 and older (Medicare Part B, Title XVIII); (3) increased government benefits through the Social Security program (formerly called the “Old-Age, Survi- vors, and Disability Insurance” system in Medi- care Part B, Title XVIII); and (4)

“Old-Age, Survi- vors, and Disability Insurance” system in Medi- care Part B, Title XVIII); and (4) improved the federal-state public assistance programs for qualifying adults with low incomes (Medicaid, Title XIX). Congress’ expansion of the Social Security Act with the Amendments of 1965 marked a pivotal moment in U.S. healthcare policy. Federal Medi- care and state Medicaid systems have evolved over time based on the legal foundations set forth in 1965 (Martin and Weaver 2005). Millions of

over time based on the legal foundations set forth in 1965 (Martin and Weaver 2005). Millions of Americans have received government benefits from one or both of the programs since their inception.  Individuals with autism spectrum disorder (ASD) and their caregivers should be knowl- edgeable about the government-sponsored ben- efits that are available under the Amendments of 1965 and their legal precedent (Bowen 2014).  Medicare Legislative Details The Amendments of 1965 added Title XVIII (18) to

(Bowen 2014).  Medicare Legislative Details The Amendments of 1965 added Title XVIII (18) to the Social Security Act to create the first regulations for the Medicare program (Cohen and Ball 1965). Medicare helps qualified individuals to access healthcare services. In its first iteration, Medicare was a welfare program that only served adults age 65 and older who received government financial aid. Over time, federal lawmakers have expanded the Amendments of 1965 so that Medi- care also covers

Over time, federal lawmakers have expanded the Amendments of 1965 so that Medi- care also covers individuals with disabilities of all ages (as defined by Social Security Administra- tion (SSA) rules) as well as individuals with end- stage renal disease (DeWitt 2010). Medicare is administered by the Centers for Medicare & Medicaid Services (CMS), which is a government agency within the U.S. Department of Health & Human Services (DHHS). Since 1965, Congress has worked with CMS to provide

Department of Health & Human Services (DHHS). Since 1965, Congress has worked with CMS to provide additional benefits (DHHS CMS 2020a). The first version of Medicare included part A for hospital insurance and part B for medical insurance. These two parts are often referred to as “Original Medi- care.” Today, Medicare services are divided into four primary areas: part A for inpatient/hospital coverage, part B for outpatient/medical coverage, part C for supplemental healthcare benefits, and part D

part B for outpatient/medical coverage, part C for supplemental healthcare benefits, and part D for prescription drug coverage.  Per the Amendments of 1965, Medicare cov- erage is limited to items and services that are medically “reasonable and necessary” for the diagnosis or treatment of an individual’s illness or injury. Because healthcare technology, medical services, and healthcare economics are continu- ously evolving, CMS updates its guidelines regu- larly to help providers and Medicare

are continu- ously evolving, CMS updates its guidelines regu- larly to help providers and Medicare beneficiaries navigate program requirements.  Medicaid Legislative Details Title XIX (19) in the Amendments of 1965 established the first regulations for the Medicaid program. Medicaid provides state governments with the opportunity to receive federal funds for a portion of the services that it provides to people with limited incomes (DHHS CMS 2020b). Whereas Medicare is a federal program, Medicaid

to people with limited incomes (DHHS CMS 2020b). Whereas Medicare is a federal program, Medicaid programs are largely administered by their respec- tive state governments. Under the Amendments of 1965, each Medicaid program is jointly funded by both federal and state budgets. The amount of money that each state receives from the federal government for its Medicaid program varies under Federal Medical Assistance Percentage (FMAP) rules (Mitchell 2018). Each state’s Medicaid system must comply

Assistance Percentage (FMAP) rules (Mitchell 2018). Each state’s Medicaid system must comply with federal statutes and administrative regula- tions from CMS. These federal rules set the min- imum criteria for enrollee qualifications, billing procedures, and benefit categories. The nature and extent of Medicaid services varies widely between state programs. As long as they comply with fed- eral legal standards as a baseline, state Medicaid agencies can design and implement additional procedures

standards as a baseline, state Medicaid agencies can design and implement additional procedures and policies to best serve their residents.  Legislative Details for Other Key Provisions Titles XIX and XVII created several policies that protect the sensitive health information of pro- gram enrollees. These laws were among the first of their kind to govern collecting, using, and dis- closing personal health information. The US law- makers have used the guidelines from the Amendments of 1965 to

health information. The US law- makers have used the guidelines from the Amendments of 1965 to create other milestone laws that safeguard medical records, such as the Health Insurance Portability and Accountability Act of 1996 (“HIPAA,” Pub. L. No. 104–191). The 1965 Amendments also enacted new legal requirements for Social Security Disability Insur- ance (SSDI). Whenever a person is able to collect workers’ compensation payments, SSDI benefits must be reduced in accordance with SSA guide- lines

workers’ compensation payments, SSDI benefits must be reduced in accordance with SSA guide- lines (Reno et al. 2005). Under the 1965 Amend- ments, a person’s total earnings from SSDI and workers compensation cannot result in a reduced income – the total amount of reduced SSDI and workers’ compensation payments can never be less than what the individual received in SSDI before he or she became eligible for workers com- pensation. These policies are often referred to as the “workers’ compensation

for workers com- pensation. These policies are often referred to as the “workers’ compensation offset” for SSDI payments.  Legislative History and Background The 1965 Amendments’ provisions were heavily debated in the 89th Congress (U.S. Social Security Administration n.d.). The House of Representatives approved the Amend- ments on April 8, 1965. On July 9, 1965, it was approved in the Senate. President Lyndon B. Johnson signed the Amendments into law on July 30, 1965.  The momentous Medicare

Lyndon B. Johnson signed the Amendments into law on July 30, 1965.  The momentous Medicare and Medicaid stat- utes were the result of years of national delibera- tion about the need for government-sponsored healthcare coverage programs. In passing these Amendments in 1965, federal lawmakers recog- nized that a significant population of Americans could not access medical goods and services because they could not obtain health insurance from private providers. Specifically, expert reports to 89th

they could not obtain health insurance from private providers. Specifically, expert reports to 89th Congress concluded that two key issues prevented many individuals from accessing private health insurance: either they could not afford to make out-of-pocket payments to a pri- vate insurer or they were unable to work and obtain employer-sponsored health coverage (Berkowitz 2005).  Findings from the 1950 American Census were one of the driving forces behind the Amendments of 1965. Statistics in

1950 American Census were one of the driving forces behind the Amendments of 1965. Statistics in the 1950 Cen- sus established that the United States had a steadily aging population with individuals living longer lifespans than ever before (U.S. Department of Commerce Bureau of the Census 1975). At the same time, the census also found that the majority of adults age 65 and older, as well as individuals with disabilities, were either uninsured or had only minimal health insurance coverage (often

with disabilities, were either uninsured or had only minimal health insurance coverage (often referred to as “under- insured”) (U.S. National Archives and Records Administration 2020).  Since 1965, a large body of health law and policy scholars have praised Medicare and Med- icaid while recommending program expansions (Moore and Smith 2005). At the same time, a different cohort of scholars contend that the sys- tems’ financing structures are overly broad, among other concerns. Though Medicare

that the sys- tems’ financing structures are overly broad, among other concerns. Though Medicare and Medicaid policies have advanced since their establishment in 1965, many of the fundamental program goals and baseline benefits remain the same today. Lawmakers have expanded on the foundational ideas in the 1965 Amendments to provide more Americans with access to healthcare through Medicaid and Medicare. Over time, Con- gress has also increased the types of services available through the programs.

Over time, Con- gress has also increased the types of services available through the programs. In 1973, Con- gress made a ground-breaking modification to the Amendments of 1965 that allows people of all ages with long-term disabilities to access Medicare.  Over the years, judicial court opinions from the U.S. Supreme Court and case decisions from other lower courts have established guidance for interpreting the 1965 Amendments’ various pro- visions (often called “legal precedent”). Federal and

the 1965 Amendments’ various pro- visions (often called “legal precedent”). Federal and state administrative rules – typically from CMS and state health departments – also provide legal insight about Medicare and Medicaid pro- gram requirements in specific circumstances. This information is available online in the form of agency regulations, registers, manuals, and mem- oranda (e.g., DHHS CMS 2020c) and State of Michigan DHHS 2020). Though Congress and government agencies have made numerous

2020c) and State of Michigan DHHS 2020). Though Congress and government agencies have made numerous modern developments to Medicare and Medicaid laws, many of the central provisions from the 1965 Amendments are still in use today – these include the goal to reduce bar- riers to medical care for America’s most econom- ically vulnerable citizens.  Social Skill Interventions  M. S. Hope Morris Communication Sciences and Disorders, The University of Vermont, Burlington, VT, USA  Definition Social

Sciences and Disorders, The University of Vermont, Burlington, VT, USA  Definition Social skill interventions attempt to remediate deficits in the set of social skills that are used to interact and communicate with others. For indi- viduals with autism spectrum disorders (ASD), this means difficulties in initiating interactions, sharing enjoyment, sustaining reciprocity, taking the perspective of another, and making inferences about the interests of others. Social skill deficits are a central

of another, and making inferences about the interests of others. Social skill deficits are a central feature of ASD. There are many different programs established to treat these social skill deficits for individuals with ASD; however, many programs are not well researched and do not have an established evidence base.  Historical Background The social skill deficits noted in autism spectrum disorder (ASD) were first described in papers published in 1943, one in English and one in German. Leo Kanner

(ASD) were first described in papers published in 1943, one in English and one in German. Leo Kanner (1943) described 11 children with “early infantile autism” in his paper “Autistic disturbances of affective contact” and highlighted poor social relatedness as a key component of the disorder. Hans Asperger (1944) in Vienna, Aus- tria, submitted a thesis on “Autistic psychopathy in childhood” and described four children with “autistic psychopathy.” He identified these chil- dren with “deficient

described four children with “autistic psychopathy.” He identified these chil- dren with “deficient social behavior.” Since this time, significant developments have been made to help us understand the neuropsychological under- pinnings of social cognition. The notable work of researchers in the area of social cognition and theory of mind, including Dr. Baron-Cohen in England and Dr. Tony Attwood in Australia, has helped the profession and community gain a better understanding of the core social

Australia, has helped the profession and community gain a better understanding of the core social cognitive pro- cesses involved in the social interaction deficits characteristic of individuals with ASD. In addi- tion, Dr. Temple Grandin, an individual with autism, has provided invaluable insight into the neurological strengths and challenges in autism, with her book “Thinking in Pictures” (1995), including difficulties understanding the social rules of interaction and developing relationships

including difficulties understanding the social rules of interaction and developing relationships with other people. In recent years, there has been an increase in the awareness of the benefits of early intervention in ASD and the need for oppor- tunities for social engagement. With this aware- ness has come a growing interest in developing early social communication skills including joint attention and symbolic play. Current researchers in this area include Dr. Peter Hobson, Dr. Connie Kasari,

and symbolic play. Current researchers in this area include Dr. Peter Hobson, Dr. Connie Kasari, Dr. Peter Mundy, Dr. Barry Prizant, Dr. Sally Rogers, Dr. Laura Schreibman, and Dr. Amy Wetherby, among others. Practitioners, like Michelle Garcia Winner (2006), have described specific social cognition intervention strategies and developed social skills program- ming to assist professionals in intervention.  Rationale or Underlying Theory Deficits in social interaction are one of the three core

Rationale or Underlying Theory Deficits in social interaction are one of the three core characteristics of autism spectrum disorder (ASD). Difficulties in engagement and socializa- tion have far-reaching implications throughout childhood and into adulthood. Deficits in social cognition impact the development of relationships with others, academic and vocational success, as well as mental health and quality of life. Based on current research, early intervention that focuses on building joint

and quality of life. Based on current research, early intervention that focuses on building joint attention, a pivotal skill leading to later development of language and social com- munication, is key to fostering and developing social engagement with others. Social skills inter- vention is an important part of any intervention program for children and adolescents/adults with ASD.  Goals and Objectives Social skills intervention is intended to teach both pragmatics (the social use of language)

Social skills intervention is intended to teach both pragmatics (the social use of language) and social cognition (theory of mind, perspective taking), the latter being a critical component for children with ASD. Teaching pragmatic language skills can entail the (1) use of language (greeting, informing, demanding, promising, requesting), (2) changing language according to the needs of the listener or situation, and (3) following rules for conversation and storytelling (taking turns, introducing

or situation, and (3) following rules for conversation and storytelling (taking turns, introducing topics, staying on topic, rephrasing, using verbal/nonver- bal signals, facial expressions/eye contact, prox- imity). Social cognitive aspects are addressed by teaching individuals to take the perspective and to perceive the thoughts and intentions of others. These skills are often best taught by making the abstract as “concrete” as possible, using visuals and pictures to represent abstract

by making the abstract as “concrete” as possible, using visuals and pictures to represent abstract concepts.  Treatment Participants Participants in social skills intervention can vary in age, skill development, and diagnosis. Children with social skill challenges span the range of developmental disabilities from those with spe- cific learning disability and specific language impairment to those with ASD. For young chil- dren with ASD, the focus of intervention is establishing joint attention and

ASD. For young chil- dren with ASD, the focus of intervention is establishing joint attention and sharing positive affect/engagement with others during play and people games/routines. During elementary and middle school, social skills intervention may be more focused on teaching specific pragmatic lan- guage skills as well as how to engage in group activities. For children that have Asperger syn- drome or high-functioning autism, a focus on teaching social cognition skills begins early as these

drome or high-functioning autism, a focus on teaching social cognition skills begins early as these social cognitive differences are a hallmark of these disorders.  Treatment Procedures Social skills intervention for young children with autism spectrum disorder (ASD) often occurs dur- ing parent-child interactions. Teaching parents to engage their young children with ASD has posi- tive outcomes on skill development and can allow for parents to help their children engage with neurotypical peers.

skill development and can allow for parents to help their children engage with neurotypical peers. Small group settings are often utilized to teach children with autism how to play cooperatively with others. These groups are often facilitated by an educator or speech- language pathologist. For school-age children, social skills intervention occurs in groups of sim- ilarly aged peers and can include neurotypical peers as models of prosocial behavior. These groups are often facilitated by an

neurotypical peers as models of prosocial behavior. These groups are often facilitated by an educator, speech-language pathologist, and/or a psycholo- gist and can occur within the school setting or privately. Social skills intervention for the older child or adolescent with ASD entails a focus on social cognition. Often a cognitive behavioral therapy (CBT) approach is utilized to address deficits in theory of mind and perspective taking. Typically, those social skills taught include turn-

in theory of mind and perspective taking. Typically, those social skills taught include turn- taking, sharing, initiating, playing with friends, having a conversation, suggesting play ideas, giv- ing compliments, understanding jokes and idio- matic expressions, showing affection, and perspective taking. There are also a range of inter- vention strategies that support social skill devel- opment including peer mediation, social stories and comic strip conversations, video modeling, integrated

including peer mediation, social stories and comic strip conversations, video modeling, integrated playgroups, ILAUGH model, etc. Evidence-based programs utilize similar strat- egies for teaching social skills. Skillstreaming (McGinnis and Goldstein 1997) utilizes model- ing, role-playing, specific feedback, and skill transfer with homework activities to develop competence in interpersonal conflict resolution and to learn self-control of behavior. The Second Step program (Borch 2002) contains

resolution and to learn self-control of behavior. The Second Step program (Borch 2002) contains in-school curricula, parent training, and skill development to teach socioemotional skills. Teaching strategies include modeling, coaching, group decision mak-ing, and direct skill practice. Cognitive behavioral

techniques (CBTs) have been applied to the reme- diation of social deficits and involve the use of “self-talk” strategies to modify overt behaviors (Mahoney 1974; Meichenbaum 1977). Utilizing these techniques in social skills intervention, according to Kendall (1993), involves cognitive, behavioral, developmental, and emotive strategies that include modeling, role-playing, reinforce- ment, and self-evaluation. CBTs have been uti- lized by specific practitioners to develop social skills

and self-evaluation. CBTs have been uti- lized by specific practitioners to develop social skills intervention for individuals with autism spectrum disorder (ASD), including the social thinking curriculum (Winner 2006).  Efficacy Information Based on a review of four recent, critical reviews of social skills intervention research (Bellini et al. 2007; Matson et al. 2007; Rao et al. 2008; White et al. 2006), there is currently limited evidence for the effectiveness of group social skills

et al. 2006), there is currently limited evidence for the effectiveness of group social skills interven- tion. Current research lacks control groups for comparison and lacks blind observers to evaluate results. All studies lack generalization techniques to demonstrate use of skills across settings. Fur- ther, there is limited longitudinal research to deter- mine maintenance of skill acquisition, and, in many cases, there is a lack of consensus on a common definition of what comprises social

and, in many cases, there is a lack of consensus on a common definition of what comprises social skills. Of particular note is the study by Bellini et al. (2007) reviewing school-based social skills group intervention. Overall, there is a lack of evidence that children with ASD are receiving effective social skills intervention in the school setting. Recommendations based on these reviews include the need for a manualized social skills curriculum, the use of rigorous research designs to assess

the need for a manualized social skills curriculum, the use of rigorous research designs to assess the effectiveness of intervention, the consistency in measurement, and the implemen- tation of generalization measures.  Outcome Measurement There are few assessment instruments that are able to adequately measure social skills across a variety of contexts. Standardized tests are typi- cally not adequate in sensitivity measures to assess these skills. However, standardized mea- sures exist that

in sensitivity measures to assess these skills. However, standardized mea- sures exist that consist of parent, teacher, and individual rating scales and provide a view of social skills development that considers the impact on communication, academic perfor- mance, and behavior. Measures such as the Social Skills Rating System (SSRS; Gresham and Elliott 1990) and the Vineland Adaptive Behavior Scales, Second Edition (Vineland II; Sparrow et al. 2005) are often utilized as stan- dardized measures

Second Edition (Vineland II; Sparrow et al. 2005) are often utilized as stan- dardized measures of social skill development. Other standardized measures specific to mea- suring skills in autism spectrum disorder (ASD) include the Autism Social Skills Profile (ASSP; Bellini 2006), the Social Responsive- ness Scale (SRS; Constantino and Gruber 2005), and the Social Communication Ques- tionnaire (SCQ; Rutter et al. 2003). These stan- dardized measures should be paired with observations of social

Rutter et al. 2003). These stan- dardized measures should be paired with observations of social interactions in natural settings (home, school, group activities). A focus in the literature at this time is the limited generalization of social skills across environ- ments and contexts. More rigorous research designs and targeted evaluation of social skills are needed to determine the efficacy of social skills intervention.  Qualifications of Treatment Providers Individuals providing social skills

skills intervention.  Qualifications of Treatment Providers Individuals providing social skills intervention should have training and experience in working with individuals with autism spectrum disorders. These licensed professionals may include psy- chologists, speech-language pathologists, social workers, and educators. Individuals with some form of psychological training can be well versed in teaching skills to adolescents and can address some of the concomitant behavioral and psycho-

in teaching skills to adolescents and can address some of the concomitant behavioral and psycho- logical issues that can be present (depression, anxiety, etc.). For individuals with autism, such religious and cultural stigmatization would further delay a proper diagnosis of the condition and thus delay treatment and rehabilitation.

Conclusion It is evident that Afghanistan lacks the appropriate institutions and funding to uplift people with autism in the country. Although there has been significant work at a legislative level to be inclusive to people with disabilities, this work often excludes individuals with intellectual disabilities and especially people living in rural areas. A history of war has plagued Afghanistan with a national mental health crisis. This crisis includes not only mental disabilities but also

with a national mental health crisis. This crisis includes not only mental disabilities but also post-traumatic stress disorders and various types of anxiety and depression. Furthermore, society outcasts individuals with intellectual and social disabilities such as autism as people who are diwana, or crazy, making it even more important for these issues to be adequately addressed. Unfortunately, international support on autism-related issues is lacking from both nongovernmental organizations

international support on autism-related issues is lacking from both nongovernmental organizations and from researchers. There are no known studies looking at the prevalence of autism in Afghanistan, and organizations such as Autism Speaks do not operate in the country. The population of individuals with autism is an especially vulnerable group in Afghanistan, making it all the more necessary to build and fund institutions that support those with autism in Afghanistan.

Arlette Cassidy The Gengras Center, University of Saint Joseph, West Hartford, CT, USA  Definition Age appropriate refers to a developmental concept whereby certain activities may be deemed appropriate or inappropriate to a child’s “stage” or level of development. Specific disabilities as well as lack of exposure to age-appropriate activities and experiences are commonly thought to prevent a child from gaining the skills necessary for their current and thus their next stage of development. It

from gaining the skills necessary for their current and thus their next stage of development. It is thought that development most often occurs in rather predictable stages. Although every child develops in a unique way, all children are expected to interact with their environment at an age-appropriate level. Looking at a child’s functional development involves observing whether or not the child has mastered certain developmental milestones and expectations for his or her age. With this

child has mastered certain developmental milestones and expectations for his or her age. With this understanding of typical child development, a child may have a special need when he or she has a delay in one or more areas of development listed below:

* Body movement * Thinking and learning * Communication * Senses and their integration * Relating to self and others * Self-care and daily living skills  Grace W. Gengoux Child and Adolescent Psychiatry, Stanford University School of Medicine, Lucile Packard Children’s Hospital, Stanford, CA, USA

Definition Age equivalent scores provide an estimate of the chronological age at which typically developing children demonstrate the skills exhibited by the child being assessed. The age equivalent score is based on the mean raw score on a test obtained by the group of children in the normative sample at a specific age. In simple terms, if on average children at 36 months of age obtain a score of 10 correct responses on a particular test, then any child obtaining a score of 10 correct will

of 10 correct responses on a particular test, then any child obtaining a score of 10 correct will receive an age equivalent of 36 months. Age equivalent scores are often expressed in years and months (e.g., 5–0 for 5 years, 0 months).

Though age equivalent scores are appealing in that they appear to provide convenient descriptive information, they can be misleading and do not necessarily represent the level of functioning of the individual. For example, a 3-year-old child who receives an age equivalent of 4–6 on a test of expressive vocabulary is only similar to a 4½-year-old child in the number of items answered correctly on the test and does not necessarily share other characteristics of 4-year-old level expressive

on the test and does not necessarily share other characteristics of 4-year-old level expressive language ability. As an overall average of abilities, any age equivalent score should be interpreted with caution as the child may actually possess individual skills which fall above or below that level. Especially for children with significant scatter within their profile of abilities, these summary scores may provide an oversimplified picture of the child’s skills. As development of skills is not

scores may provide an oversimplified picture of the child’s skills. As development of skills is not linear, age equivalent scores do not represent equal units. Therefore a 6-month delay will have a different meaning for a 2-year-old child than for a 10-year-old child. Because they are based on ordinal scales, statistical computations such as standard error of measurement cannot be performed and confidence intervals cannot be determined. Correct interpretation of age equivalent scores must take

intervals cannot be determined. Correct interpretation of age equivalent scores must take these issues into account. In spite of these limitations, age equivalent scores may be especially useful when standard scores are not available, such as when a test is administered to a child with significant developmental delays whose chronological age falls outside the normative range for that test.

Gayle C. Windham Division of Environmental and Occupational Disease Control, CA Department of Public Health, Richmond, CA, USA

Definition A “cohort” is a component of the population who shares a significant experience at a certain period of time or has one or more similar characteristics. A common usage for the term is to describe people born in the same time period as a birth cohort (or generation). In epidemiological terms, it is used to denote a group of individuals sharing a common characteristic or experience, such as the same workplace or living near a waste site, who are observed over time for disease incidence

as the same workplace or living near a waste site, who are observed over time for disease incidence and compared to a group without the characteristic, or to a general population (e.g., cohort study). “Cohort analysis” is the calculation and analysis of morbidity (or mortality) rates for a particular disease in a birth cohort as they pass through various ages, with different cohorts overlapping at different ages in the same calendar time period.

Historical Background Cohort analysis began as a tool to describe and understand mortality trends and is now commonly used to identify birth cohorts at higher risk for certain diseases, providing information for both public health surveillance and for the identification of etiologic factors. Age-period-cohort (APC) analysis refers to the interpretation of temporal trends in disease incidence or mortality rates in terms of three scales all related to time: age, calendar date (period), and year

mortality rates in terms of three scales all related to time: age, calendar date (period), and year of birth (cohort). An age effect reflects the change in disease risk as a function of the age of individuals, such as cardiovascular disease, so differences in the age structure of samples being studied could affect disease incidence rates. A period effect refers to a change over time that tends to affect everyone regardless of age, such as an epidemic or a food contamination. A cohort effect is

affect everyone regardless of age, such as an epidemic or a food contamination. A cohort effect is a variation in disease risk that applies to all individuals sharing a common experience associated with being born around the same time or in the same generation, such as change in exposure to a risk factor.

Disentangling these effects can be quite difficult due to their interdependence; e.g., cohort effects are tied to both age and period effects (Fombonne 1994; Keyes et al. 2010). Various graphical and analytic methods, including parametric and nonparametric approaches, for understanding trends in disease rates have been developed and received considerable attention in the literature (Glenn 1976; Holford 1983, 2005; Keyes et al. 2010; Kupper et al. 1985; Robertson and Boyle 1998). An early

Holford 1983, 2005; Keyes et al. 2010; Kupper et al. 1985; Robertson and Boyle 1998). An early method of statistical modeling of APC data was the multiple classification model, a model containing the effects of age groups (rows), periods of observation (columns), and birth cohorts (diagonals of the age-by-period table) (Kupper et al. 1985). The interpretation of such models is difficult due to the linear dependence between the three APC variables, which must be accounted for in the models. The

linear dependence between the three APC variables, which must be accounted for in the models. The various models basically treat the definition of the cohort effect in a different way; simplified, some models treat age and period effects as confounders of a cohort effect whereas others model the interaction, or effect modification, of age and period on the cohort. The decision of how to treat these variables is not really a statistical issue but rather depends on the study question of interest

variables is not really a statistical issue but rather depends on the study question of interest and how it is posed. Thus, the APC models are best used to organize and summarize data, potentially pointing out directions for future research to determine the true factors for which time is acting as a proxy.

Current Knowledge Relevance to Autism The reporting or prevalence of autism has greatly increased over the past few decades, but the reasons for the temporal increase continue to be debated (Croen et al. 2002; Fombonne 2003; Hertz-Picciotto and Delwiche 2009; King and Bearman 2009; Parner et al. 2008; Rice et al. 2010; Schecter and Grether 2008; Idring et al. 2015; Christensen et al. 2016). Several of these studies have examined age-cohort effects and observe increases for each age group in

of these studies have examined age-cohort effects and observe increases for each age group in subsequent (more recent) cohorts. The reasons most commonly cited or examined for the increase include (1) younger age at diagnosis; (2) changes in diagnostic criteria, including shifts from other diagnoses (primarily mental retardation); (3) increased awareness of autism, so that ascertainment is improved or milder cases ascertained; and (4) true changes in the frequency, possibly via introduction of,

or milder cases ascertained; and (4) true changes in the frequency, possibly via introduction of, or increase in, a variety of non-genetic risk factors.

Autism diagnosis is strongly related to age of the child, so shifts to younger ages at diagnosis could artificially inflate prevalence rates among later cohorts if not taken into account in comparisons (Parner et al. 2008). Further complicating interpretation, age at diagnosis may be related to other factors such as child gender, race/ethnicity, IQ, and degree of impairment, as well as parental education, whose distribution could differ across cohorts (Christensen et al. 2016; Shattuck et al.

education, whose distribution could differ across cohorts (Christensen et al. 2016; Shattuck et al. 2009). Studies have not shown consistent effects of diagnostic shift or substitution on temporal trends, although its occurrence has been supported (King and Bearman 2009; Leonard et al. 2010). Differences in autism rates by race/ethnicity could reflect differential awareness and thus temporal trends as awareness increases and the racial distribution of cohorts change (Rice et al. 2010; Windham

as awareness increases and the racial distribution of cohorts change (Rice et al. 2010; Windham et al. 2011). Alternatively, racial differences may reflect access to services, for which temporal trends may be less predictable.

As there is no biologic test or marker of autism, diagnosis is somewhat subjective. The medical and psychiatric criteria for diagnosis have changed over time since the 1980s, generally broadening, which might be reflected as period effects. However, the magnitude of effect of this change on prevalence rates is not agreed upon across investigators (Leonard et al. 2010). Further, the impact of the most recent diagnostic changes (DSM-5), which can be considered a tightening of criteria, has not

most recent diagnostic changes (DSM-5), which can be considered a tightening of criteria, has not been fully evaluated but may lead to leveling off of the increasing rates (Bennett and Goodall 2016; Maenner et al. 2014).

Two studies using data from California calculated age and birth year (cohort) rates in order to examine the impact of various factors, but without conducting formal APC analysis (Hertz-Picciotto and Delwiche 2009; Schecter and Grether 2008). Both showed that for each successive year of birth, incidence increased for each age, although more steeply for younger children in the 2009 analysis. Similar age-cohort patterns were seen in Stockholm (Idring et al. 2015). Hertz-Picciotto and Delwiche

age-cohort patterns were seen in Stockholm (Idring et al. 2015). Hertz-Picciotto and Delwiche (2009) further attempted to calculate the proportion of increased incidence due to changes in age at diagnosis, diagnostic criteria, or inclusion of milder cases and found that while these explained some, they accounted for only about a third of the overall change. One recent study based on similar California data but using an APC model (Keyes et al. 2012) reported strong cohort effects so that each

data but using an APC model (Keyes et al. 2012) reported strong cohort effects so that each successively younger cohort had higher odds of autism diagnosis, controlling for age and period effects. They concluded that the drivers of the increase in autism must be factors that have increased linearly year to year and aggregate in birth cohorts but did not examine specific causes.

Future Directions Explaining the reasons for temporal trends of a health condition may provide important information for identifying, and thereby potentially ameliorating, risk factors for the disease, and for planning services. Studies show rising rates of autism by birth cohort that are not fully explained by diagnostic changes or awareness, so research to explain the increase is still very much needed. A variety of risk factors, from endogenous (such as parental age shifts) to exogenous

much needed. A variety of risk factors, from endogenous (such as parental age shifts) to exogenous (such as environmental exposures or maternal infection), are currently being investigated (Lyall et al. 2017). Formal APC analysis might shed some light by focusing investigators on factors that vary over time by birth cohort. The one study conducted thus far was based on only one of the possible models, however, so other models might not yield consistent results.

John P. Hegarty1, Antonio Y. Hardan1 and Thomas Frazier2,3 1Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA, USA

2Autism Speaks, New York, NY, USA 3Cleveland Clinic Children’s, Cleveland, OH, USA  Short Description or Definition The corpus callosum (CC) is the largest white matter fiber tract (also known as commissure) connecting the two hemispheres of the human brain. Agenesis of the corpus callosum (AgCC) is present at birth and encompasses structural defects of the development of the corpus callosum that range from partial to complete loss of these connective fiber tracts. Primary AgCC is a complete

range from partial to complete loss of these connective fiber tracts. Primary AgCC is a complete loss of the CC without other accompanying brain changes. A rare individual diagnosed with ASD is found to have AgCC.

Categorization The CC is generally divided into seven subregions. AgCC is divided into partial (Fig. 1) and complete (Fig. 2) based on whether one or more subregions are missing (Fig. 1) or whether the entire CC is absent (Fig. 2). In both cases, the anterior commissure – a smaller white matter tract connecting ventral frontal regions – is almost always intact, with abnormalities limited to the CC. Commissurotomy is a surgical procedure that typically involves severing all fiber tracts

to the CC. Commissurotomy is a surgical procedure that typically involves severing all fiber tracts connecting the hemispheres, including the CC, to treat intractable epilepsy in which seizures that start in one hemisphere propagate to the other hemisphere. Callosotomy is a subtype of commissurotomy that involves only severing of the CC.

Agenesis of Corpus Callosum, Fig. 1 Partial AgCC Agenesis of Corpus Callosum, Fig. 2 Complete AgCC  Epidemiology AgCC has been estimated to occur in at least 1 in 4,000 births, with one study identifying two cases in 2,309 neonates (Wang et al. 2004). AgCC is often associated with other developmental or neurogenetic syndromes including Arnold-Chiari malformation, Dandy-Walker syndrome, Aicardi’s syndrome, holoprosencephaly, and numerous others. Approximately 30–45% of AgCC cases have currently

syndrome, holoprosencephaly, and numerous others. Approximately 30–45% of AgCC cases have currently identifiable genetic syndromes or chromosomal abnormalities. This percentage is likely to increase with advances in the sensitivity of genetic testing and the identification of new genetic disorders (Paul et al. 2007). For example, deletions on chromosome 1q42-q44 (Boland et al. 2007) and 14q12 (Shoicet et al. 2005), as well as multiple other chromosomal abnormalities (O’Driscoll et al. 2010),

et al. 2005), as well as multiple other chromosomal abnormalities (O’Driscoll et al. 2010), have been more recently identified.

Natural History, Prognostic Factors, and Outcomes The CC is the largest and most important structure for interhemispheric transfer of information. It contains fibers that connect both homotopic and heterotopic interhemispheric regions, meaning some fibers connect regions of the left and right hemispheres that are directly analogous (e.g., the left and right superior temporal regions), while others connect regions that are not directly analogous (e.g., the left superior temporal and right

others connect regions that are not directly analogous (e.g., the left superior temporal and right middle temporal regions). CC function was first examined by studying the cognitive skills of individuals who underwent commissurotomy or callosotomy, often called “split-brain” patients. These studies were useful for demonstrating specialization of the left and right halves of the brain. However, because these patients typically had surgical severing later in life, these studies did not provide

because these patients typically had surgical severing later in life, these studies did not provide information about the contributions of the CC to cognitive and brain development. More recent studies of babies and children with AgCC are providing data about the developmental role of the CC.

AgCC involves abnormal formation of the CC, typically between the third and 12th weeks of pregnancy, and is observable at birth via neuroimaging methods such as MRI. It appears that both genetic and environmental factors can play a role in the development of AgCC. Several genetic disorders and syndromes have been associated with AgCC, and evidence from animal work has shown the important roles specific genes play in the normal development of the CC. For example, individuals with X-linked

specific genes play in the normal development of the CC. For example, individuals with X-linked lissencephaly (meaning “smooth brain”) have a mutation in the ARX gene and exhibit AgCC. In the developing brain, ARX proteins are involved with neuronal migration and deficient levels cause abnormal cell cycling and impair the migration of neurons (Friocourt et al. 2008) that should ultimately form the CC. AgCC also occurs in the context of in utero exposure to alcohol with <7% of individuals with

CC. AgCC also occurs in the context of in utero exposure to alcohol with <7% of individuals with fetal alcohol syndrome showing near complete AgCC and a greater proportion having partial AgCC or other CC malformations (Roebuck et al. 1998).

The cognitive impairments associated with AgCC are quite variable, although some consistent findings have emerged. Studies of younger children have identified developmental delay, learning difficulties, or behavior problems in the majority of AgCC cases (Goodyear et al. 2001; Shevell 2002). Individuals with complete AgCC may have worse cognitive function and outcomes (Paul et al. 2007), although this has not been consistent across studies. Interestingly, although AgCC patients tend to show at

this has not been consistent across studies. Interestingly, although AgCC patients tend to show at least mild cognitive or behavioral difficulties, they do not exhibit the classic disconnection pattern shown by adult “split-brain” patients who had all commissures surgically severed, including the CC. Thus, individuals with congenital AgCC frequently show intact ability to transfer visual and auditory information across the left and right hemispheres. This may be because most AgCC patients have

information across the left and right hemispheres. This may be because most AgCC patients have an intact anterior commissure and this structure may support some compensation of interhemispheric transfer.

AgCC can have substantial impact on specific cognitive functions. For example, many individuals with AgCC show significant differences in their verbal and nonverbal (visual) abilities, although which area is stronger varies across individuals (Chiarello 1980; Sauerwein et al. 1994). The most prominent deficits are in complex tasks that involve integration of multiple facets of information or rapid processing of complex arrays of stimuli. Thus, impairments may involve abstract reasoning (Brown

processing of complex arrays of stimuli. Thus, impairments may involve abstract reasoning (Brown and Paul 2000), problem solving (Fischer et al. 1992), and the ability to generalize a rule from one situation to another (Solursh et al. 1965) or to quickly generate examples from a category (e.g., specific names of animals or fruits and vegetables) (David et al. 1993). Deficits have also been observed in understanding pragmatic aspects of language, including problems in understanding idioms,

in understanding pragmatic aspects of language, including problems in understanding idioms, metaphors, sarcasm, and other forms of nonliteral language and humor. Individuals with AgCC often show alexithymia or difficulty with verbally reporting emotional states and experiences. Parents of individuals with AgCC also frequently report social skill deficits.

Not surprisingly, given deficits in the processing of complex social and contextual information and parent reports of social weaknesses, AgCC has been identified in individuals diagnosed with ASD, or perhaps more accurately, some individuals with AgCC have been diagnosed with ASD. However, it is important to note that the vast majority of individuals with ASD do not have AgCC and not all individuals with AgCC would be diagnosed with ASD. One study that sought to examine the prevalence of

with AgCC would be diagnosed with ASD. One study that sought to examine the prevalence of ASD-related symptoms in individuals with AgCC reported that 45% of children, 35% of adolescents, and 18% of adults with AgCC met criteria for ASD on the Autism Spectrum Quotient, a parent- and self-report screening tool for autism (Lau et al. 2013). Thus, the two conditions overlap, but are not redundant. The best-known example of this overlap is Kim Peek, the inspiration for the movie Rain Man who was

The best-known example of this overlap is Kim Peek, the inspiration for the movie Rain Man who was widely known for his savant skills. These skills included photographic memory and an amazing ability to read and remember vast amounts of information in a short period of time. However, Kim Peek was not a typical example of primary AgCC because, in addition to having complete AgCC, he also was missing the anterior commissure, had macrocephaly and cerebellar malformation, and may have had a genetic

the anterior commissure, had macrocephaly and cerebellar malformation, and may have had a genetic syndrome (FG or Opitz-Kaveggia syndrome) linked to the X chromosome.

Adult outcomes of AgCC, even primary AgCC, are highly variable with some individuals showing intact overall ability and functioning and others showing significant intellectual disability and dependence on caregivers for even basic needs. Important prognostic factors related to this variability may include the level of agenesis (partial or complete) and the extent of other brain abnormalities.

Clinical Expression and Pathophysiology As discussed above, clinical features are highly variable but include a wide range of deficits in general cognitive ability, large differences between verbal and nonverbal abilities, fairly consistent deficits in specific tasks that require rapid processing of complex information, social perception and skill weaknesses, and impairments in identifying/describing emotions (alexithymia). Developmental manifestations are not well known but are likely to be

emotions (alexithymia). Developmental manifestations are not well known but are likely to be also highly variable with some individuals showing mild early delays with relatively intact functioning later in life and others showing consistently low levels of ability and functioning throughout the life span.

Evaluation and Differential Diagnosis Asymptomatic AgCC is by definition hard to identify or diagnose since neuroimaging studies are not conducted without an indication. However, with prenatal ultrasound examination becoming more common and prenatal MRI being further developed, it is possible that identification of CC abnormalities may become more frequent. These alterations can be detected at 20 weeks of gestation, and once identified, associated features should be investigated (Vergani et

20 weeks of gestation, and once identified, associated features should be investigated (Vergani et al. 1994). In the majority of cases, a specific syndrome is diagnosed either during pregnancy or immediately after birth. In young children and older individuals, the presence of associated features such as seizures or developmental delays can prompt a comprehensive evaluation, including brain imaging that leads to diagnosis. When AgCC is associated with a neurogenetic condition, the clinical

that leads to diagnosis. When AgCC is associated with a neurogenetic condition, the clinical features of this syndrome will be more evident. The list of conditions associated with anomalies of the CC is long and includes Chiari II malformations, Andermann’s syndrome (intellectual disability and polyneuropathy), and Joubert’s syndrome type III (absence of cerebellar vermis and polymicrogyria).

Treatment There is no treatment for complete or partial AgCC. CC fibers will not regenerate and appropriately localize after that initial in utero critical period. However, given continued investigation into brain plasticity, even in adults, and a greater appreciation for the efficacy of early, intensive behavioral intervention and training, patients with AgCC may have therapeutic options in the future to help optimize their adaptive functioning. For instance, through greater understanding of

future to help optimize their adaptive functioning. For instance, through greater understanding of the genes and biological pathways involved, it may be possible in the future for a combination of early detection and personalized genetic therapies addressing the specific molecular problems to optimize long-term outcomes in individuals with AgCC. Certainly, eliminating alcohol use in pregnancy, particularly in the first trimester, will reduce the number of cases of AgCC.

Tina R. Goldsmith Center for Development and Disability, University of New Mexico, Albuquerque, NM, USA

Description The Ages and Stages Questionnaires (ASQ-3): A Parent-Completed Child Monitoring System, Third Edition (Squires et al. 2009) is a first-level comprehensive screening and monitoring program designed to identify infants and young children who require more extensive assessment to determine whether early intervention is warranted. It is designed to be easy to administer, low-cost, and appropriate for diverse populations, including children suspected of having an autism spectrum

and appropriate for diverse populations, including children suspected of having an autism spectrum disorder. The monitoring system consists of two measures and associated user materials, the ASQ-3 and the ASQ:SE.

The ASQ-3 includes 21 questionnaires, one for each of the following ages: 2, 3, 6, 8, 9, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, and 60 months. The questionnaires are designed to be completed by parents or other primary caregivers in less than 15 min and scored by a professional in less than 3 min. Each questionnaire contains 30 developmental items which are organized into five areas: Communication, Gross Motor, Fine Motor, Problem Solving, and Personal-Social. An Overall

areas: Communication, Gross Motor, Fine Motor, Problem Solving, and Personal-Social. An Overall section addresses general parental concerns. In order to make the questionnaires user-friendly, items are written at a fourth to sixth grade level and illustrations are provided. For the 30 developmental items on each questionnaire, parents mark “yes” to indicate that their child performs the behavior, “sometimes” to indicate an occasional or emerging response, or “not yet” to indicate that their

“sometimes” to indicate an occasional or emerging response, or “not yet” to indicate that their child does not yet perform the behavior. During the scoring process, each response is converted to a point value, values are totaled, and totals are then compared to established screening cutoff points. Each questionnaire comes with instructions, an information sheet for identification, activities for each social-emotional area, and an information summary sheet for scoring and general comments.

The ASQ:SE, which is used to screen for the presence of social-emotional delays, includes eight questionnaires, one for each of the following ages: 6, 12, 18, 24, 30, 36, 48, and 60 months. The measure addresses seven social-emotional areas: self-regulation, compliance, communication, adaptive behaviors, autonomy, affect, and interaction with people. Like the ASQ-3, the ASQ:SE relies on parents to observe their child and complete the measure. Each questionnaire discusses social-emotional

to observe their child and complete the measure. Each questionnaire discusses social-emotional activities tied to the age of the child being screened, and by virtue of completing the questionnaire, parents learn about social-emotional milestones as well as their child’s strengths and vulnerabilities. For each item, parents mark “most of the time” to indicate that their child performs the behavior, “sometimes” to indicate an occasional or emerging response, or “rarely or never” to indicate that

“sometimes” to indicate an occasional or emerging response, or “rarely or never” to indicate that their child does not yet perform the behavior. Parents are also asked to check whether the behavior in question is a concern for them, and space is provided to allow for open-ended, narrative responding about certain aspects of their child’s social-emotional development. Much like the ASQ-3, each response is converted to a point value, values are totaled, and totals are then compared to established

is converted to a point value, values are totaled, and totals are then compared to established screening cutoff points. Following completion of the questionnaire, professionals may proceed with a referral for additional assessment and/or provide learning activity sheets to support the parent in further promoting social-emotional development.

Historical Background In the 1970s, researchers at the University of Oregon, led by Dr. Diane Bricker, recognized the need for economical, valid, and culturally sensitive screening tools to identify young children who might be at risk for developmental delays. Following a landmark study on parents’ ability to report on their child’s early development (Knobloch et al. 1979), researchers including Dr. Bricker and Dr. Jane Squires conducted an extensive review of standardized developmental

Dr. Bricker and Dr. Jane Squires conducted an extensive review of standardized developmental assessments and associated literature, and they selected a set of skills easily observed or elicited by parents within the home environment. Using these skills, Drs. Bricker and Squires created a series of questionnaires that asked parents simple questions about their child’s development. In response to pilot data, the questionnaires were expanded and refined, and in 1995, the questionnaires were first

data, the questionnaires were expanded and refined, and in 1995, the questionnaires were first published commercially by Brookes Publishing as the Ages & Stages Questionnaires® (ASQ): A Parent-Completed, Child-Monitoring System. In 1999, a revised and expanded edition of ASQ was published based on continuing research and user feedback. Data collection on the third edition, ASQ-3, began in 2002, and in 2009, the revised measure was published and an online management and questionnaire completion

in 2009, the revised measure was published and an online management and questionnaire completion system was launched.

The ASQ:SE was created in response to growing demand for a screening tool for social-emotional concerns in young children. In 1995, the development process was initiated, and the first version of the Ages & Stages Questionnaires®: Social-Emotional (ASQ:SE) took form. Items in the early version of the ASQ:SE were developed using multiple sources, such as standardized social-emotional and developmental assessments, textbooks and other resources in developmental and abnormal psychology, language

assessments, textbooks and other resources in developmental and abnormal psychology, language and communication materials, and education and intervention resources. In 1996, validity, reliability, and utility studies on a field-test version of the ASQ:SE were initiated. The field-test version was called the Behavior-Ages & Stages Questionnaires (B-ASQ; Squires et al. 1996). Following initial refinement, studies continued between 1996 and 2001 to determine the psychometric properties of the

refinement, studies continued between 1996 and 2001 to determine the psychometric properties of the screening instrument, and in 2002, the Ages & Stages Questionnaires®: Social-Emotional (ASQ:SE): A Parent-Completed, Child-Monitoring System for Social-Emotional Behaviors was first published commercially by Brookes Publishing. Research on ASQ:SE is ongoing.

Psychometric Data ASQ:SE: According to the publisher, normative data for the ASQ:SE were based on 3014 completed questionnaires, and validity studies were conducted using 1041 children. Internal consistency measured by coefficient alpha was found to be high across intervals, ranging from .67 to .91 with an overall alpha of .82. Test-retest reliability, measured as the agreement between two ASQ:SE questionnaires completed by parents at 1- to 3-week intervals was 94%. Sensitivity ranged from 71%

questionnaires completed by parents at 1- to 3-week intervals was 94%. Sensitivity ranged from 71% at 24 months to 85% at 60 months, with 78% overall sensitivity. Specificity of the questionnaires ranged from 90% at 30 months to 98% at 6 months, with 94% overall. Percent agreement between questionnaires and standardized assessments/disability status ranged from 88% at 30 months to 94% at 60 months, with overall agreement of 92%. Under-referral ranged from 2.4% at 60 months to 4.7% at 12 months,

with overall agreement of 92%. Under-referral ranged from 2.4% at 60 months to 4.7% at 12 months, while over-referral ranged from 3.0% at 18 months to 8.6% at 30 months. The ability of the ASQ:SE to detect atypical social-emotional development (sensitivity) was generally lower across intervals, while specificity, or the ability of the ASQ:SE to correctly identify typically developing children, was high. Specificity may have been elevated in the 6-, 12-, and 18-month intervals because of the

was high. Specificity may have been elevated in the 6-, 12-, and 18-month intervals because of the large number of “identified” children in these samples and the small number of low-moderate risk children.

ASQ-3: The ASQ-3 has a new standardization based on a sample that closely mirrors the US population in geography and ethnicity and includes children of all socioeconomic statuses. The sample includes 15,138 children whose parents completed 18,232 questionnaires. According to the publisher, reliability, validity, sensitivity, and specificity are all excellent: Test-Retest Reliability ¼ .92; Inter-rater Reliability ¼ .93; Validity ¼ .82 to .88; Sensitivity ¼ .86; Specificity ¼ .85.

Clinical Uses Parents or caregivers complete the ASQ-3 and ASQ:SE questionnaires independently, or, if necessary, with the assistance of a professional. With online questionnaire completion through the web-based ASQ Family Access, parents are able to complete the ASQ-3 anytime, anywhere. The ASQ-3 and ASQ:SE questionnaires can also be completed on paper at home; during home visits by nurses, social workers, or program staff; in waiting areas; or in educational centers. According to the

social workers, or program staff; in waiting areas; or in educational centers. According to the authors, the measures can be adapted to a variety of settings, including primary care clinics, child care settings, and teen parenting programs. Both measures are designed for easy use and generally require little training, although it is important for professionals to be familiar with the information contained in the User’s Guide. Many programs use the available DVD training tools to introduce the

contained in the User’s Guide. Many programs use the available DVD training tools to introduce the ASQ and show staff how to screen, score, and interpret results, and for programs desiring more training, the publishing company regularly hosts remote and on-site training seminars.

Claudia Califano Yale-New Haven Hospital, New Haven, CT, USA  Definition It is a partial or complete loss of the ability to recognize and identify familiar objects or persons through sensory stimuli. The specific sense is not defective nor is there any significant memory loss. People with agnosia may retain their cognitive abilities in other areas. Agnosia may affect any of the senses and is classified accordingly as auditory, visual, olfactory, gustatory, or tactile agnosia. It can result

classified accordingly as auditory, visual, olfactory, gustatory, or tactile agnosia. It can result from strokes, dementia, or other neurological disorders and illnesses. It may also be trauma-induced by a head injury, brain infection, or hereditary. Some forms of agnosia have been found to be genetic. It often results from damage to specific brain areas in the occipital or parietal lobes of the brain (Kolb and Whishaw 2003). Agnosia is found in Landau-Kleffner syndrome, a disorder that is

the brain (Kolb and Whishaw 2003). Agnosia is found in Landau-Kleffner syndrome, a disorder that is included on the differential diagnosis for autism (Johnson and Myers 2007). Landau-Kleffner syndrome (also known as LKS and acquired epileptic aphasia) is a rare childhood neurological disorder characterized by the loss of previously acquired language milestones, an inability to understand the spoken word and an abnormal electroencephalogram (EEG). These children develop normally until between

word and an abnormal electroencephalogram (EEG). These children develop normally until between the ages of 3 to 6 in contrast to autism, which is manifest prior to the age of 3 (Landau and Kleffner 1957; Teplin 1999). Regardless of cause, there is no direct cure for the agnosia. Patients may improve if information is presented in other modalities than the damaged one. Different types of therapies can help to reverse the effects of agnosia. In some cases, occupational therapy or speech therapy

can help to reverse the effects of agnosia. In some cases, occupational therapy or speech therapy can improve agnosia, depending on its etiology.

Diana B. Newman Communication Disorders Department, Southern Connecticut State University, New Haven, CT, USA

Definition Agraphia is an impairment or loss in the ability to write in individuals (most often adults) who had typical spelling and/or handwriting prior to brain damage, either sudden or progressive. Agraphia occurs as a result of damage to the cognitive, linguistic, and/or sensorimotor areas of the brain that support spelling and writing (Beeson and Rapczak 2004). Lesions in specific regions in these areas affect the ability to retrieve words and/or their spellings and/or to form the letters

these areas affect the ability to retrieve words and/or their spellings and/or to form the letters to write the words. Agraphia may be broadly categorized into two types: central or peripheral. Central agraphia affects an individual’s ability to spell, while peripheral agraphia is characterized by handwriting difficulties (Beeson and Rapczak 2004). Additionally, visual perceptual changes that impair handwriting are not uncommon in those with brain injury. Although the characteristics of

impair handwriting are not uncommon in those with brain injury. Although the characteristics of agraphia are similar to those of developmental dysgraphia, the defining feature of agraphia is a history of typical writing skills before writing difficulties appeared; therefore, agraphia is not seen in children and adolescents with autism spectrum disorders (ASD).

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

Definition A rare genetic in which the corpus callosum (the major connection between the right and left hemispheres of the brain) is either totally or partially missing. It is associated with other abnormalities including seizures and a form of infantile spasms as well as characteristic eye abnormalities. It is thought likely that the source of the condition is on the X chromosome (it is observed only in girls or in boys with Klinefelter’s syndrome); it is also possible that the condition is

only in girls or in boys with Klinefelter’s syndrome); it is also possible that the condition is lethal to males with typical XY chromosome patterns – i.e., that the pregnancies miscarry. First recognized by Jean Aicardi, a French neurologist, in 1976, the condition usually has its onset in the first months of life. The condition is rare. Although very likely to have a genetic cause, it is thought that all cases arise as a result of new mutations. Treatment involves symptomatic management and

that all cases arise as a result of new mutations. Treatment involves symptomatic management and treatment of associated problems, e.g., seizures, feeding problems, and sometimes hydrocephalus. Although outcome appears to vary, the condition is associated with significant cognitive delays.

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  Definition AKATHISIA: Akathisia is an adverse medication effect described as an unpleasant feeling of restlessness. It is most often associated with antipsychotic medication, but may occur with antidepressant medications such as serotonin reuptake inhibitors. In the class of antipsychotic medications, akathisia is more likely to occur with the older

In the class of antipsychotic medications, akathisia is more likely to occur with the older antipsychotics such as haloperidol, but it may occur with the newer antipsychotics such as risperidone. Patients typically describe a feeling of internal restlessness and an inability to sit still. The observer might see the patient jiggling a leg while sitting or even kicking the leg out from the sitting position. In more extreme cases, the person may be unable to sit at all and will get up and pace

position. In more extreme cases, the person may be unable to sit at all and will get up and pace around the room. The cause of akathisia is not completely understood. It usually does not improve with anticholinergic medications that are often effective for other neurologically based adverse effects of antipsychotic medications. The first response is to lower the medication, beta blockers, or switching to another antipsychotic medication may be helpful.

BARNES AKATHISIA SCALE: Barnes Akathisia Rating Scale (BAS) was introduced in late 1980s. It consists of four items that are divided into objective item, subjective item, and an overall global scale. It is the most commonly used scale for measuring akathisia.

Sigvard Lingh Uppsala, Sweden  Autism: Definition The word autism comes from the Greek word “auto” and can be translated to selfish-ism. The autism spectrum is also called autism spectrum disorders (ASD) or autism spectrum conditions (ASC), with the adjective autistic sometimes replacing the noun autism.

Categorization Autism is a spectrum of psychological conditions characterized by widespread abnormalities of social interactions and communication as well as restricted interests and repetitive behavior. Asperger’s syndrome can be seen as a mild form of autism, and in DSM-5, Asperger’s was moved to sort under autism.

Natural History Autism was first described in 1911 by Swiss psychiatrist Eugen Bleuler (1857–1939) who mentioned, not too distinctly, two forms: schizophrenic autism and infantile autism. Both terms have been taken up by later psychiatrists and applied, confusingly, to a number of apparently different groups of disordered and socially isolated individuals (Tantam 1980). While John Langdon Down (1828–1896) is best known for having described Down’s syndrome (trisomy 21) and savant syndrome in

(1828–1896) is best known for having described Down’s syndrome (trisomy 21) and savant syndrome in his 1887 lecture, he made an additional very astute observation about what he called “developmental retardation.” Today, that condition is known as autistic disorder (Treffert 2006).

Some people with autism spectrum disorders give grandiose and detailed descriptions of their special interests. That grandiose factor points to a parallel between narcissism (a.k.a. “psychopathy light”) and alexithymia. All these disorders belong to the (old psychiatry) borderline group, while others are shy, passive in contact with other people, or vice versa: intrusive and talkative. Michael Rutter (1978) held that all reports of autism must begin with the book Autistic Disturbances of

Rutter (1978) held that all reports of autism must begin with the book Autistic Disturbances of Affective Contact (1943) by Leo Kanner (1894–1981) where he described autism and held that the disorder probably was due to an inherited deficiency.

The characteristic symptoms of autism can be summarized as being rigid, a lack of social or emotional reciprocity, reduced communication skills, and limited interests – the last, however, can be very sophisticated (DSM-IV). Author Malika Mokeddem, herself an autist, was addressed by a friend: “You talk like a book.” If an autistic child has difficulties in imagining feelings of other people that may be because such a child has a biological worldview. A personality theory based on a biological

may be because such a child has a biological worldview. A personality theory based on a biological approach differs from a psychological theory. Therefore, the claim that autistic children would be able to assess other people’s personality is unlikely to be true. (Pragmatic) autistic children, however, are adept at determining if a person really loves them. They don’t talk to a person who just talks in a friendly way, but does not help them – and as such, one might add that they would not be in

in a friendly way, but does not help them – and as such, one might add that they would not be in the first line of being victims of psychopaths, unless their curiosity takes over.

Hans Asperger (1906–1980) wrote (according to Frith 1991): “To our great surprise, we have seen how autistic individuals with good cognitive ability almost always achieve professional success, often in highly specialized academic professions and in very high positions, preferably within theoretical fields” and “A number of successful musicians were treated at our clinic when they were children. This seemingly surprising fact what such difficult and abnormal children can achieve at acceptable

This seemingly surprising fact what such difficult and abnormal children can achieve at acceptable and even high levels of social integration can be explained if one studies this phenomenon somewhat closer.” “Autistic children may . . . possess a surprisingly well-developed understanding of art and have a solid understanding when distinguishing between genuine art and kitsch. They may even understand works of art that many adults perceive as difficult, such as Romanesque sculptures and

understand works of art that many adults perceive as difficult, such as Romanesque sculptures and paintings by Rembrandt. Autistic individuals may correctly perceive both the events unfolding on the board as to what lies behind, including portrayed individuals’ characters and the mood that pervades the painting. One should not forget that many adults never achieve an equally well-developed understanding of art. This skill is closely related to autistic people’s tendency to engage in a very

of art. This skill is closely related to autistic people’s tendency to engage in a very special form of introspection and their ability to judge other people&apos;s characters.”

Related Studies of the Brain Research on twins by Folstein and Rutter published in Nature 1977 demonstrated the genetic influence on autism. They later wrote that “autism is one of the best validated child psychiatric disorders that exist.” Here are clear key concepts and empirically demonstrated genetic influences (Bailey et al. 1996). Although brain imaging with MRI has revealed specific anomalies in white and folded gray brain tissue for several of those disorders or conditions, the precise

in white and folded gray brain tissue for several of those disorders or conditions, the precise relationship between structural changes and changes in neuronal function and relations remains unclear. Over the past decade, great hopes have been directed toward brain imaging techniques such as PET, SPECT, and functional MRI (fMRI). Torsten Wiesel, Nobel Prize winner in Physiology or Medicine 1981, expressed his surprise at how the research field around the brain and vision has been developed and

expressed his surprise at how the research field around the brain and vision has been developed and expressed a wish for more specific cell studies instead of just using MRI for locating different brain functions. Hope of early diagnosis may ultimately be directed toward integration of fMRI, cell studies, and specific genetic tests.

Gender Issues Hans Asperger said (according to Frith 1991) that he had never encountered a girl with fully developed autism, and in his textbook of 1952, he reaffirms that all young girls he had met with a full-blown autism had acquired the disease after suspected encephalitis. In the past, such girls were called pseudopsychopaths or were diagnosed ADHD. But those young girls who exhibited the typical Asperger’s variant of autism are now well documented; the fact remains that the vast majority

Asperger’s variant of autism are now well documented; the fact remains that the vast majority are boys (Frith 1991). A gender-linked form of inheritance is fully consistent with this pattern. The genetic causes of autism are not fully known. Social expectations of boys versus girls should also be observed. In a 2011 summary, Michael Rutter reported significant progress during the years 2007–2010 understanding autism. A little later in 2011, Andrew Whitehouse et al. published their article that

understanding autism. A little later in 2011, Andrew Whitehouse et al. published their article that autistic traits can be early detected and that they have a rather moderate stability from early childhood into adolescence.

Autism Disorder, Autism Spectrum, Autism Spectrum Disorders, or...? There is no univocal definition of the term autism spectrum. Connotated terms are attached like epilepsy, learning difficulties, delayed language development, self-injurious behavior, stomach problems, ADHD, tics, clumsiness, etc. Through a critical review of 69 research studies carried out between 1981 and 2010, Sharma et al. (2011) showed that six possible criteria (specifically the age at which signs and symptoms related to

showed that six possible criteria (specifically the age at which signs and symptoms related to autism become apparent, language and social communication abilities, intellectual abilities, motor or movement skills, repetitive patterns of behavior, and the nature of social interaction) for diagnosing Asperger’s overlap with the criteria for diagnosing autism. Hippler and Klicpera (2005) looked at Hans Asperger’s original data for the period 1950–1986 (n ¼ 181) and performed a quantification of

Hans Asperger’s original data for the period 1950–1986 (n ¼ 181) and performed a quantification of the two groups “autistic psychopathy” (AP) and autistic character (AZ). The latter group did produce less severe symptoms, higher intelligence, and communicative difficulties commonly associated with Asperger’s, while the AP group showed a broader symptom picture. Hans Asperger’s old term autistic psychopathy or elements of psychopathy in autism is still used by some authors as well as in the

psychopathy or elements of psychopathy in autism is still used by some authors as well as in the ICD-10. It would be preferable to write autistic personality disorder or autistic personality spectrum. One of the cores of what we understand about psychopathy (nonexistent morals) has no place in an autism-Asperger’s diagnosis.

Frith (1991), citied Hans Asperger: With concentrated energy and obvious confidence and, yes, with blinkers toward life’s many possibilities, they follow their own path toward that which their talents have directed them since childhood – thus once again realizing the saying: “Man’s good and bad qualities are only two sides of the same coin. It is simply impossible to separate them, to choose the good and reject the bad.” Other researchers have asked autists and aspergians about their own

the good and reject the bad.” Other researchers have asked autists and aspergians about their own perceptions of their situation. Respondents indicated an unusual perception and information processing, plus difficulty in regulating emotions – descriptions not included in the official DSM criteria. There are obviously different views on how aspergians and autists are to be understood. The psychological dysfunction underlying the triad of impairments (imaginative thinking, socialization, and

dysfunction underlying the triad of impairments (imaginative thinking, socialization, and communication) could be described as the inability to put oneself in the position of another and to appreciate their thoughts, feelings, and wishes. This triad describes both Asperger’s and autism. Obviously there is more to be said about imaginative thinking as, e.g., Einstein is considered to have had Asperger’s.

There is no common understanding of the prevalence of Asperger’s within the general population. Findings between studies differ but are usually below 1 %. 50 years after Hans Asperger’s publication, it entered the DSM-IV in 1994. The removal of Asperger’s from the DSM-5 is likely to be controversial as the Asperger diagnosis is used by health insurers, researchers, state agencies, and schools – just to say nothing of people with the diagnosis, many of whom proudly call themselves aspies.

– just to say nothing of people with the diagnosis, many of whom proudly call themselves aspies. Several of this world’s great thinkers are said to have been “suffering” from Asperger’s like Socrates, Archimedes, Pythagoras, Julius Caesar, Napoleon Bonaparte, Charles Darwin, Albert Einstein, Ludwig Wittgenstein, Bertrand Russel, Charles Babbage, Isaac Newton, Nikola Tesla, Kurt Gödel, Charles Lindbergh, John Watson, Alfred Kinsey, George Orwell, H. G. Wells, Ludwig van Beethoven, Wolfgang

Lindbergh, John Watson, Alfred Kinsey, George Orwell, H. G. Wells, Ludwig van Beethoven, Wolfgang Amadeus Mozart, Georg Friedrich Händel, Pyotr Illyich Tchaikovsky, H. C. Andersen, Jane Austen, Immanuel Kant, and Alfred Nobel. What would the world today look like if they had been prescribed selective serotonin reuptake inhibitors (SSRIs), fluoxetine, fluvoxamine, and sertraline for treating their restricted and repetitive interests and behavior?

Alexithymia Alexithymia was introduced in 1973 by Peter Sifneos and was initially used for patients with psychosomatic disorders including a reduction in emotions, imagination, and finding words to describe their own feelings. Alexithymia is a cluster of cognitive and affective characteristics including difficulty identifying and communicating feelings, trouble distinguishing between feelings and somatic sensations of emotional arousal, impoverished and restrictive imaginative life, and a

and somatic sensations of emotional arousal, impoverished and restrictive imaginative life, and a concrete and reality-oriented style (Taylor et al. 1997). Sometimes alexithymia has come to be associated with traditional masculinity in terms of negative characteristics as homophobia, violence, neglect of health, detached fathering and partnering, substance abuse, etc. (Levant and Richmond 2007).

If there is a common link between alexithymia and psychopathy, it may lie in the characteristic of impulsivity, so much in alexithymics that it seems to overcome their natural reluctance to break social conventions. Wastell and Booth (2003) have actually suggested that psychopathy should be viewed as alexithymia. Beginning with Niccolò Machiavelli’s text (1513, 1987, The Prince), they argued that a psychopath is not a person who knowingly and intentionally manipulates his victims but instead

a psychopath is not a person who knowingly and intentionally manipulates his victims but instead is a victim of his own emotional limitations. A typical person with alexithymia is therefore anxious, overcontrolled, boring (Taylor et al. 1982), and submissive and has a strict ethical approach. This puts alexithymia far away from psychopathy.

This last thing needs to be clarified; there is a significant positive correlation between secondary (anti-social) psychopathy and alexithymia, but not between primary psychopathy (often seen more stressing on genetic causes) and alexithymia. Alexithymia also seems to parallel Asperger’s. Psychopaths on the other hand show low anxiety; are impulsive, dominant, charming, and deceitful; and do not necessarily try to fit in. One case clearly showing how alexithymia and psychopathy can be mixed up

necessarily try to fit in. One case clearly showing how alexithymia and psychopathy can be mixed up is given by Ellis (2008). He described a man who killed his father without being aware that he was angry. He fully realized intellectually that the evidence (in the researchers’ opinion) showed he must have been angry with his father, but he could not feel the anger. Perhaps he was not angry but just alexithymic? In short, there are similarities between alexithymia and psychopathy, but on ethical

alexithymic? In short, there are similarities between alexithymia and psychopathy, but on ethical and moral issues, as in being able to lie and charm, psychopathy differs as much from alexithymia as it differs from Asperger’s and autism.

There may be reasons for not considering the mild form of autism, Asperger’s syndrome, as negatively and pathologizing as is being done today. Besides negative traits that are normally highlighted in the diagnosis, i.e., various aspects of so-called low social competence, one should take into account their high personal moral and personal care that often characterize individuals within the Asperger’s syndrome (Dubin 2007). There is a similarity between autism and narcissism in the young child

syndrome (Dubin 2007). There is a similarity between autism and narcissism in the young child and sometimes even in adults in their misapprehension of the reality or empathic understanding of other people’s existence. “While a normal child is unaware of itself and adequately interacting with others as an integral member of the collective, the autistic child is constantly busy with observing itself. It is itself the object of interest and directs its attention towards its body movements” (Frith

It is itself the object of interest and directs its attention towards its body movements” (Frith 1991). During the 1950s, Carl Rogers shed light on or specified empathy, saying that empathy is the ability to step into another person’s shoes – and out again – thereby differentiating empathy from pity, compassion, and sympathy. Empathy has two components (cognitive empathy and emotional empathy). The extreme emotional component can be illustrated by “rushing to the rescue” and the extreme

The extreme emotional component can be illustrated by “rushing to the rescue” and the extreme cognitive aspect carefully planned rescue operation.

Autism, Alexithymia, and Humor The presence of humor is a strong and useful instrument in psychodiagnostics with its requirements of verbal skills, social skills, and emotional and intellectual self-mirroring. But, as Hooker (1934) said, it can also be a matter of taste and as such difficult or impossible to define. According to psychoanalytic theory, a personality structure more developed than psychosis and borderline is required when dealing with jokes (you don’t kid around with a

than psychosis and borderline is required when dealing with jokes (you don’t kid around with a borderline). People with early disorders (psychosis and borderline, i.e., borderline according to the old psychiatry nomenclature, before the DSM) perceive life in a black or white mode, good or bad, us and them (see Youtube.com or Google Videos: Pink Floyd, “Us and them”), and right or wrong – they see nothing in between. Much of what most people see as humor is a verbal game with nuances and

see nothing in between. Much of what most people see as humor is a verbal game with nuances and multiple meanings of words or expressions. Only neurotics and psychologically healthy people can make or understand jokes like that. Frith (1991), citing Hans Asperger, wrote that autistic children and those with Asperger’s disorder have no sense of humor, especially if the joke is directed toward them. He held that it was partly due to that they are rarely relaxed and unconcerned. So individuals

He held that it was partly due to that they are rarely relaxed and unconcerned. So individuals with Asperger’s disorder are impaired in humor appreciation although anecdotal and parental reports provide evidence to the contrary.

The language of alexithymic persons has generally been described as flat and humorless, and subjects are characterized by cognitive, operative thinking. An often cited expression is the French “pensée opératoire” (operational thinking). It has been used in texts covering psychopathy, Asperger’s, autism, and alexithymia but is most often used for the last group. “People who are managed by alexithymics sense their dullness and boredom quickly, and they become frustrated when attempts at

alexithymics sense their dullness and boredom quickly, and they become frustrated when attempts at interaction fail. Not even humor works” (Kets de Vries 2009). Borderline individuals with their black or white, matter-of-fact behavior instead of empathic participation rather laugh at other people while neurotics and “non-disturbed” individuals laugh with other people.

Nature or Nurture? Over the past 60 years, the pendulum of public and scientific opinion on the etiology of autism has swung between two extreme positions: (1) that autism is caused by some specific genetic abnormality, spawning a search for the “autism gene,” and (2) that autism is the result of some specific environmental factor or condition. There are three related potential explanations: the sociological, the physiological, and the developmental. When trying to explain autism, two

the sociological, the physiological, and the developmental. When trying to explain autism, two positions have been suggested: a genetic abnormality and an environmental factor, including a “lack of maternal warmth.” Although the etiology of autism has remained elusive, the evidence to date has strongly refuted both of these extreme positions (Strathern 2009; Bumiller 2009). In parallel with the sociological explanation of psychopathy, maybe a sociological explanation for autism and Asperger’s

sociological explanation of psychopathy, maybe a sociological explanation for autism and Asperger’s can be seen in their wish for social acceptance rather than cures (Lawson 2008). Some studies have found that parents of children with autism were more likely to have been hospitalized for a mental disorder. Those studies do however not agree on if the parents had their diagnoses before or after the birth of their child. Did parental disorder cause the child’s disorder or was it the other way

the birth of their child. Did parental disorder cause the child’s disorder or was it the other way around? To that comes the problem of differing between social heritage and genetic heritage. Usually, parents can detect interference patterns long before a formal diagnosis usually is given. Some parents to autistic children seem to feel lack of contact with their children before the children reach 18 months of age. That may explain some parents developing mental disorders after their child being

18 months of age. That may explain some parents developing mental disorders after their child being born.

Different Levels of Achievement Some of this world’s great thinkers are said to have been “suffering” from Asperger’s (above). What a given individual eventually will achieve depends on a combination of genetic heritage and environment. To that come pre-, peri-, and postnatal damages; social heritage, cultural, and social norms and rules – or short: (genetic) heritage sets the roof, environment how close to the roof one will get – and how that roof is defined.

The Very Intelligent Individual’s Problem More or less, all studies comment on the inability of others to understand the highly gifted. One way of handling that, e.g., was formulated by Leta Hollingworth (1866–1939): “Of all the special problems of general conduct which the most intelligent children face, I will mention five, which beset them in early years and may lead to habits subversive of fine leadership:

1.  To find enough hard and interesting work at school 2.  To suffer fools gladly 3.  To keep from becoming negativistic toward authority 4.  To keep from becoming hermits 5.  To avoid the formation of habits of extreme chicanery” The second point of Hollingsworth above could be of use for the highly gifted, as one way of handling that others don’t understand – although themselves not actually understanding that others don’t understand! A lesson many gifted persons never learn as long as they

that others don’t understand! A lesson many gifted persons never learn as long as they live is that human beings in general are inherently very different from themselves in thought, in action, in general intention, and in interests. Many a reformer has died at the hands of a mob which he was trying to improve. Leta Hollingworth also stressed the importance of providing a matching environment for highly gifted children.

Treatment, Education, or Just Acceptance There is no unanimous definition of a successful treatment. Some say a successful treatment means the patient reports works or study and is happy living in a good relationship, others that the patient just succeeded in going back to work, while still other definitions could be compared to the surgical concept of arthrodesis, and finally some say the patient just didn’t kill himself. Perhaps we should stop seeing autism as a medical disorder and instead

just didn’t kill himself. Perhaps we should stop seeing autism as a medical disorder and instead see it as one of life’s expressions. One can of course object that this is going a bit too far as there are different kinds of autistic disorders and that perhaps a third of them express some form of incomplete development, i.e., a health problem and not a matter of statistical discrepancy. With a diagnosis, parents may receive medical and psychological/educational support, while the child may be –

parents may receive medical and psychological/educational support, while the child may be – and sometimes inaccurately – labeled and marked for life. Some autism researchers have expressed: The autism rights movement seeks acceptance, not cures. A parallel might be found in a highly intelligent and stimulus-seeking child misdiagnosed as ADHD.

Asperger/Autist: Truth Teller, Fundamentalist, Terrorist? What will happen to the Asperger, the truth seeker, the truth teller? Adolescents and adults with Asperger’s may engage in activities leading to fundamentalist religions (Attwood 2003). Maybe the Norwegian terrorist Anders Behring Breivik started as a rigid, principle-ridden Asperger’s with an ideological goal (Norway only for Norwegians)? Different groups of experts in Norway have suggested diagnoses as narcissism, psychopathy,

Different groups of experts in Norway have suggested diagnoses as narcissism, psychopathy, schizophrenia, or “no psychiatric diagnose at all.” Niklas Långström said (2012) that Behring Breivik was neither psychotic nor suffering from substance use disorders, so there must be other explanations. Anders Behring Breivik may perhaps be seen as a truth-seeking aspergian, i.e., totally disregarding other people’s views and feelings. With that, a new road for terrorist research on the consequences of

people’s views and feelings. With that, a new road for terrorist research on the consequences of fundamentalist personalities is indicated. When, and if, an aspergian develops toward “the pure thinking” of fundamentalism, the “medicine” is a dialogue, however, not an easy one. The method in question has a parallel in international styles of mediation (compared with the work of Jan Eliasson, Deputy Secretary-General of the United Nations) between conflicting powers where presumably often “pure

Secretary-General of the United Nations) between conflicting powers where presumably often “pure thinking” is involved among the parties or combatants.

In the Judiciary Several researchers have pointed to major differences in moral and conventional behavior between most children and children with autism or ADHD and, on the other hand, child psychopaths and adult psychopaths scoring lower. In most countries, psychopaths are seen as fully responsible for their actions. Among those with Asperger’s syndrome, there are at most 10 % with savant skills, and they are a problematic group for the judiciary. There is a need for a better understanding of

and they are a problematic group for the judiciary. There is a need for a better understanding of Asperger’s for those working within the criminal justice sector that lack the requisite training to respond effectively to those with Asperger’s. As stated above, autists should be seen normal beings who want acceptance instead of cures. If that is so, they should be seen as normal responsible people even in a court. Asperger individuals and autists can, so to speak, meet with the judiciary in

even in a court. Asperger individuals and autists can, so to speak, meet with the judiciary in three instances: police, court, and in the question of sanctions. First, police needs more training. Second, in court psychopaths, Asperger people and autists should be treated as everybody else. Third, when it comes to issues of legal consequence or sanction, i.e., suspended sentence, probation, claim for damages, fines, restraining order, treatment (psychiatric), or prison, more research is needed.

Isabelle Rapin Neurology and Pediatrics (Neurology), Albert Einstein College of Medicine, Bronx, NY, USA
 Name and Degrees Allen, Doris A., 1932–2002 BA – English/Speech Pathology/Audiology (1954) MA – Applied Linguistics, Teachers College, Columbia University, New York City (1964)
MA – Psychology, Teachers College, Columbia University, New York City (1971) EdD – Psycholinguistics, Teachers College, Columbia University, New York City (1973)

Major Appointments (Institution, Location, Dates) Post doctoral Multidisciplinary Fellowship in Neuroscience, Albert Einstein College of Medicine, Bronx, NY (1974–1976)
Assistant Professor to Professor of Clinical Child Psychiatry and Clinical Pediatrics, Albert Einstein College of Medicine, 1977–2002.

Principal Investigator for the Autism Subproject – Diagnosis and classification of autistic children – of the NIH program project grant: Nosology: Higher Cerebral Function Disorders in Children (NS 20489) (1985–1993).
Assistant Professor to Professor of Clinical Child Psychiatry and Clinical Pediatrics, Albert Einstein College of Medicine, 1977–2002.

Principal Investigator for the Autism Subproject – Diagnosis and classification of autistic children – of the NIH program project grant: Nosology: Higher Cerebral Function Disorders in Children (NS 20489) (1985–1993).
 Major Honors and Awards President’s Scholarship, Teachers College, Columbia University (1964–1966). Principal Investigator, NIH grant: The development of communicative competence in prematurely born children (1977).

Landmark Clinical, Scientific, and Professional Contributions (All at Albert Einstein College of Medicine, Bronx NY, USA) * Director of the Therapeutic Nursery in the Division of Child Psychiatry of the Albert Einstein College of Medicine, 1978–1995. Director after its move to Tenafly NJ: 1995–2002.
* Developed a parent-child intervention model in the Nursery for educating preschool children with autism spectrum disorders without mental retardation.

* Trained generations of residents/fellows in child psychiatry, child neurology, and pediatrics to recognize milder autism spectrum disorders and how they can be managed effectively.
* Trained many graduate students and postdoctoral neuropsychology and speech/language pathology fellows in the diagnosis, education, and management of children with autism.

* Led the Einstein research group on language disorders in preschoolers. * Was principal investigator of the autism subproject and investigator of the Autism Subproject of the multidisciplinary multiinstitutional Nosology project.
* With I. Rapin developed a neurologically and linguistically based clinical classification of developmental language disorders in preschoolers with/without autism for clinicians’ use in their offices.

Short Biography Born and brought up in Indiana, Dr. Doris A. Allen started her professional life as an English teacher and mother of three sons. She subsequently relocated to New York, was remarried to Dr. Robert L. Allen, Professor of Linguistics at Columbia University where she obtained master’s degrees in both psychology and applied developmental psycholinguistics and a doctorate in linguistics. After a 2-year postdoctoral fellowship in neuroscience at Albert Einstein College of Medicine,

After a 2-year postdoctoral fellowship in neuroscience at Albert Einstein College of Medicine, she was appointed to the faculty and as Director of the Therapeutic Nursery in the Division of Child Psychiatry. She turned it around from Freudian therapy of mothers to education of high functioning preschoolers with autism spectrum disorders (ASD), with a curriculum focused on social skills, communicative language, and self-management (Allen and Mendelson 2000). Dr. Allen recognized much earlier

language, and self-management (Allen and Mendelson 2000). Dr. Allen recognized much earlier than most investigators that, besides severely impaired and intellectually deficient children with classic autistic disorder, there are many intelligent children on the autism spectrum for whom early, intensive, specialized intervention may enable them to grow up to become independent or nearly independent adults.

Dr. Allen developed the novel and highly effective parent-child model for the Nursery in which a caretaker attends school daily with the preschooler and is trained “in the trenches” to manage severe behavioral outbursts (“melt-downs”) and to communicate more effectively with their child. Other family members receive some counseling as well, with tremendous improvement in the quality of life for everyone. While at Einstein – and even now – the Nursery served as laboratory for research. Equally

everyone. While at Einstein – and even now – the Nursery served as laboratory for research. Equally important, it provided the opportunity for physician trainees in child psychiatry, child neurology, and pediatrics to learn to spot mildly affected children likely to respond to appropriate educational intervention. Dr. Allen trained child psychiatrists, as well as graduate students and postdoctoral fellows, in psychology and speech/language pathology in the diagnosis, education, and treatment of

fellows, in psychology and speech/language pathology in the diagnosis, education, and treatment of children with autism. She was invited to lecture by many parent groups and at professional meetings in the USA and abroad.

Among her distinguished trainees are the child neuropsychologists Dr. Michelle A Dunn, an Einstein Professor, and Dr. Hilary Gomes, a Professor at City University of New York Graduate Center, who use electrophysiology to study language in autism (Dunn et al. 1999; Dunn et al. 1996). Dr. Dunn has developed an innovative visually based curriculum for children with ASD of all ages mainstreamed to regular classes (Dunn 2005; Fein and Dunn 2007). Another trainee, Dr. Mary Jure, has replicated with

classes (Dunn 2005; Fein and Dunn 2007). Another trainee, Dr. Mary Jure, has replicated with success the Einstein nursery in Cordoba, Argentina. Still another, Dr. Sylvie Goldman, studies narrative in children with autism (Goldman 2008), its male preponderance (Pfaff et al. 2011), and repetitive movements viewed as movement disorder rather than self-stimulation (Goldman et al. 2009).

Dr. Allen was the leader of the Einstein research group on language deficits in preschoolers (Allen 1988; Rapin and Allen 1987) and Co-principal Investigator for autism in the Nosology project (Fein et al. 1996). She stressed that effective remediation required subtyping of language deficits in order to address each child’s needs individually (Allen et al. 1989; Allen 1994). She teamed with Dr. Isabelle Rapin, a child neurologist, to develop a neurologically and linguistically based clinical

Isabelle Rapin, a child neurologist, to develop a neurologically and linguistically based clinical classification of developmental language disorders for nonspecialists applicable to any young child, whether on the autism spectrum or not. They found that there are several subtypes of language disorders in autism, including some affecting phonology and grammar (Allen and Rapin 1992; Rapin et al. 2009). Major distinctions between autism and developmental language disorders are different subtype

2009). Major distinctions between autism and developmental language disorders are different subtype prevalences, together with defective comprehension and universal and persistently impaired pragmatics (communication skills) in ASD. Dr. Allen coined the term semantic-pragmatic language disorder, now widely used, to describe chatty children whose expressive language is superior to their comprehension of discourse, whether or not they fulfill criteria for an ASD (Rapin and Allen 1998).

In short, Dr. Allen’s interest in preschoolers with inadequate language and behavior and their treatment led to many publications, lectures, and the training of many professionals in the USA and abroad. Perhaps her most enduring contribution is the innovative and effective model for educating preschoolers with ASD, as indicated by the majority of the graduates of her therapeutic nursery able to be educated in regular classrooms with or without the need for an aide and many among the older ones

educated in regular classrooms with or without the need for an aide and many among the older ones graduating from college or other higher education who are now independently employed.

Susan Hyman Developmental and Behavioral Pediatrics, Division Chief Neurodevelopmental and Behavioral Pediatrics, University of Rochester Golisano Children’s Hospital, Rochester, NY, USA

Definition An allergy is the body’s exaggerated response to a foreign antigen (substance) or allergen that results in an immune response leading to a reaction such as allergic conjunctivitis (itchy eyes), allergic rhinitis (runny nose), anaphylaxis (allergic shock), asthma, atopic dermatitis, eczema, hives, serum sickness, or contact dermatitis (skin rash). The body makes antibodies (immunoglobins) that attach to foreign particles like allergens and viruses to allow the immune system to

that attach to foreign particles like allergens and viruses to allow the immune system to dispose of them. People who are allergic to a compound will make the immunoglobin type IgE in response to exposure to that compound. Common allergens include dust mites, animal dander, pollen, and foods. Allergic contact dermatitis is not mediated through IgE. While there is genetic predisposition to allergies, it requires a period of exposure (sensitization) for a person to make antibodies and develop

it requires a period of exposure (sensitization) for a person to make antibodies and develop symptoms. The production of antibodies in response to an allergen leads to allergic symptoms through release of chemicals such as histamine from the body’s own cells which leads to inflammation. Allergies may start at any age. Some allergic manifestations such as asthma may be more problematic in childhood. Food allergies may present as tingling or swelling of the throat and tongue, nausea, diarrhea,

Food allergies may present as tingling or swelling of the throat and tongue, nausea, diarrhea, skin reactions, or even anaphylaxis. The most common food allergens are milk, fish, shellfish, peanuts, tree nuts, eggs, wheat, and soy. Allergy workup may be initiated after a history of symptoms after exposure to an allergen. Blood tests such as the enzyme linked immunosorbent assay (ELISA) or radioallergosorbent testing (RAST) may detect specific IgE antibodies associated with allergic response.

testing (RAST) may detect specific IgE antibodies associated with allergic response. Blood testing is not as accurate as skin testing. Skin prick, intradermal, or patch testing characterizes an individual’s response to allergens administered using standard procedures and measurement of response. The best treatment for allergies is to avoid the allergen responsible for symptoms. Symptomatic relief may be possible with antihistamines, eyedrops, and topical or oral steroid preparations depending

may be possible with antihistamines, eyedrops, and topical or oral steroid preparations depending on the type of symptom. Treatment of asthma may require both management of the allergy and medication to address lung function. People who respond to allergens with anaphylaxis must carry epinephrine for injection since anaphylaxis may be fatal. Allergy shots or immunoprophylaxis is a type of treatment that is usually supervised by a medical doctor specializing in allergy and immunology where small

that is usually supervised by a medical doctor specializing in allergy and immunology where small amounts of the target allergen are injected into a patient to help build up antibody response.

Maureen Early1, Logan Wink2,3, Craig A. Erickson1,2,3 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

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

Definition A prescription drug in the group of triazolobenzodiazepines in the family of benzodiazepines initially FDA-approved for medical use in the year 1981 with the chemical formula C17H13ClN4. This compound has low water solubility and high lipid solubility. This drug acts as a central nervous system depressant and is mostly metabolized by cytochrome P450 (CYP450) enzyme 3A4. This high-potency benzodiazepine with a half-life of 10–15 h is FDA-approved for the treatment of panic disorder

benzodiazepine with a half-life of 10–15 h is FDA-approved for the treatment of panic disorder and anxiety disorders and can also be used to treat seizures, premenstrual dysphoric disorder, tricyclic antidepressant-related jitteriness syndrome, and valproate-induced tremors. Observed side effects include drowsiness, light-headedness, dizziness, depression, tiredness, nausea, insomnia, and diarrhea.

N N N N Cl  Vannesa T. Mueller Speech-Language Pathology Program, University of Texas at El Paso College of Health Science, El Paso, TX, USA

Definition Alternative communication (also called augmentative and alternative communication or AAC) is an area of clinical practice within the field of speech-language pathology. A definition of AAC is provided by the American Speech-Language-Hearing Association (ASHA). According to ASHA, AAC “includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas” (ASHA 1997). The types of AAC include aided and unaided communication systems.

wants, and ideas” (ASHA 1997). The types of AAC include aided and unaided communication systems. Aided systems are those that require something other than the individuals’ body to communicate. That “something” could be picture symbols, written words, or a high-tech, speech generating device. Conversely, unaided systems are those that do not require anything separate from one’s own body to communicate. Essentially, gestures, body language, and sign language are examples of unaided systems.

Historical Background The field of AAC began with the development of the International Society for Augmentative and Alternative Communication (ISAAC) in 1983. Before this, AAC was not a unified field and existed as a combination of interventions (communication boards and sign language) and products designed for individuals with speech and motor impairments. In fact, the use of augmentative or alternative communication for individuals with speech impairments may have first been introduced in

alternative communication for individuals with speech impairments may have first been introduced in the 1920s in the form of communication boards for individuals with cerebral palsy. The 1960s and 1970s saw an increase in the use of technology for AAC purposes. Typewriters that used innovative input methods such as a sip-and-puff switch were invented. Speech-output devices were invented in the 1970s, and portable speech-output devices were available shortly thereafter. For a more detailed look

and portable speech-output devices were available shortly thereafter. For a more detailed look at the early history of AAC, see Vanderheiden (2002).

The field of AAC has seen many changes in terms of application and philosophies. Early assessment models focused on AAC candidacy. Often much time and thought was spent examining a client’s qualifications for AAC interventions. This resulted in the thought that many individuals were too “something” for AAC and therefore not deemed appropriate for AAC services. Individuals may have been seen as having too little linguistic functioning, too much linguistic functioning, too cognitively impaired,

too little linguistic functioning, too much linguistic functioning, too cognitively impaired, too high functioning, too limited motor abilities, etc. This resulted in many individuals who could have benefited from AAC technologies not receiving proper services. Another factor which resulted in missed opportunities to provide AAC solutions was the erroneous idea that the use of augmentative communication would act as a crutch for individuals with speech impairments. It was feared by many in the

would act as a crutch for individuals with speech impairments. It was feared by many in the field that those who used AAC would not learn to communicate vocally despite research to the contrary.

Rationale or Underlying Theory The rationale for 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 possesses. 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 by which these individuals

speech and so need to implement an alternative form. AAC is the means by which these individuals communicate.

Goals and Objectives The goal of AAC is functional communication. Rate of message transfer is different for the different forms of AAC. Sign language, when produced by a fluent signer, can be produced as quickly as spoken speech (Bellugi and Fischer 1972). However, communication through means of an alternative communication device occurs at an excruciatingly slow 15 words per minute (Foulds 1987) compared to 150–250 words per minute for speakers (Goldman-Eisler 1986). Therefore, rate of

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 communication for individuals who use aided systems.

Treatment Participants Any individual who has impaired communication is a candidate for AAC. 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. The currently used assessment model is called the participation model (see Beukelman and Mirenda 2005 for a thorough description of the model). The model emphasizes those areas that an individual is not able to take

description of the model). The model emphasizes those areas that an individual is not able to take part in due to their communication impairments. As such, this model is inclusive and appropriate for any individual who has communication needs in any area of their life.

Treatment Procedures Using the participation model (Beukelman and Mirenda 2005) as a guide, AAC interventions focus on allowing an individual with speech impairment to participate in their environment to the same extent as that of their peers. Beukelman and Mirenda (2005) also give strategies and recommendations for implementing AAC for both nonsymbolic and symbolic beginning communicators. Nonsymbolic beginning communicators are those who use nonsymbolic communication such as gestures, facial

beginning communicators are those who use nonsymbolic communication such as gestures, facial expression, cries, or grunts. Symbolic beginning communicators use some form of symbolic communication such as words (spoken or written) or symbols with low- or high-tech communication devices. The authors state that “opportunity for communication is at least as important to the success of a communication intervention as the availability of an appropriate system” (p. 272). Additionally, the authors

intervention as the availability of an appropriate system” (p. 272). Additionally, the authors provide techniques related to shaping intentional communication, using scripted routines, providing natural consequences, and using structured instructional techniques such as the adapted strategic instruction model (A-SIM), structured practice, and conversational coaching.

Efficacy Information Efficacy research in the field of AAC is a relatively 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 communication of AAC users. Since that publication, many more research studies have been conducted that are devoted to the efficacy of AAC for specific populations. Autism is one of those populations that has been widely studied.

of AAC for specific populations. Autism is one of those populations that has been widely studied. Overwhelmingly, the use of AAC has resulted in increased language skills in children with autism over treatment approaches that focus on speech alone. For most individuals with autism, 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 language skill. The use of nonelectronic-aided systems such as picture use has also been shown to increase functional communication, and a wide range of individuals with autism have been able to make use of this type of communication. High-tech AAC use has been shown to increase language abilities and speech output in individuals with autism as well. See Goldstein (2002) and

language 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

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 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.

Christopher Gillberg Department of Child and Adolescent Psychiatry, Gillberg Neuropsychiatry Centre, University of Gothenburg, Gothenburg, Sweden

Definition Clinical medical work without diagnosis is pointless. There can be no medical epidemiological study of psychiatric or developmental disorder without a consideration of diagnostic boundaries. Diagnostic systems in psychiatric and developmental medicine are overarching models of symptoms, problems, functional restrictions, impairments, traits, signs, and psychological and biological test markers that constitute a particular disease, disorder, or group of disorders. Among these, the

markers that constitute a particular disease, disorder, or group of disorders. Among these, the most influential are clinically based, generally agreed models such as the World Health Organization International Classification of Diseases and Disorders (ICD) (WHO 1993) and, for psychiatric disorders, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM) (APA 1994, 2011). However, there are also factor analytic models, signal detection models, continuous

1994, 2011). However, there are also factor analytic models, signal detection models, continuous distribution models with statistically predetermined cutoff arbiters, and artificial network models, but these, in spite of being important for the development of new operationalized criteria for categorical diagnoses, have, so far, had relatively little impact in clinical practice. There are also taxonomies proposed by individual research groups who have developed alternative diagnostic systems

taxonomies proposed by individual research groups who have developed alternative diagnostic systems that may – or may not – take into account the existence of the other clinically based models. This entry cannot avoid discussing modeling issues and the most commonly used clinically based systems, before going on to take a look at alternative diagnostic systems, including issues relating to multiple complex developmental disorder (MCDD), deficits in attention, motor control, and perception

complex developmental disorder (MCDD), deficits in attention, motor control, and perception (DAMP), empathy disorders, nonverbal learning disability, and early symptomatic syndromes eliciting neurodevelopmental clinical examinations (ESSENCE).

Historical Background The ICD The ICD is the international standard diagnostic classification for clinical practice and epidemiological and health management purposes. The current version (ICD-10) has a section for psychiatric disorder (including for autism or Pervasive Developmental Disorders) that is similar, but not identical, to that of the DSM-IV, which was published at about the same time as the ICD-10. Attempts were made during the development of the psychiatric section of the ICD-10

as the ICD-10. Attempts were made during the development of the psychiatric section of the ICD-10 and the DSM-IV to streamline the two manuals. This was partly successful, but there are still considerable differences across the texts, criteria, and algorithms for diagnosing particular disorders, and some disorders appear only in one of the manuals. Given that the DSM, compared to the ICD, has a much longer history when it comes to developing and analyzing operationalized criteria for

has a much longer history when it comes to developing and analyzing operationalized criteria for psychiatric disorder, there will be a more detailed focus on the DSM than on the ICD. Much of what will be said about the DSM-IV (and the development of the DSM-5) applies in principle to the ICD-10 (and the development of the ICD-11, which is scheduled for publication in 2013).

The DSM The Diagnostic and Statistical Manual of Mental Disorders (DSM-I) was published in 1952. The DSM-II, published in 1968, was 134-page long and listed 182 disorders. Both the DSM-I and the DSM-II reflected the predominantly psychodynamic psychiatry, although they also included biological perspectives and concepts from Kraepelin’s system of classification. Symptoms were not operationalized. The criteria adopted for many of the mental disorders in the DSM-III (1980) were taken from the

The criteria adopted for many of the mental disorders in the DSM-III (1980) were taken from the Research Diagnostic Criteria (RDC) and the Feighner Criteria, which had already been developed by a group of research-oriented psychiatrists. Other criteria, and potential new categories of disorder, were established by consensus during meetings of the DSM committee. A key aim was to base categorization on descriptive language rather than assumptions of etiology. A new “multiaxial” system attempted

on descriptive language rather than assumptions of etiology. A new “multiaxial” system attempted to yield a “bigger picture.” When published, the DSM-III was almost 500-page long and listed 265 diagnostic categories. It rapidly came into widespread international use by multiple stakeholders and has been termed a revolution or transformation in psychiatry. In 1987, the DSM-III-R was published as a revision of DSM-III. Six categories were deleted while others were added. The DSM-III-R contained

a revision of DSM-III. Six categories were deleted while others were added. The DSM-III-R contained 292 diagnoses and was 70 pages longer than the DSM-III. In 1994, the DSM-IV was published, listing almost 300 disorders in just under 900 pages. The steering committee had created 13 work groups, who conducted a three-step process. First, each group conducted literature reviews of their diagnoses. Then they requested data from researchers, conducting analyses to determine which criteria required

Then they requested data from researchers, conducting analyses to determine which criteria required change, with instructions to be conservative. Finally, they conducted field trials relating diagnoses to clinical practice. A change from previous versions was the inclusion of a clinical significance criterion to about half of the categories. A “text revision” of the DSM-IV, known as the DSM-IV-TR, was published in 2000. The diagnostic categories and the vast majority of the specific criteria

was published in 2000. The diagnostic categories and the vast majority of the specific criteria for diagnosis were unchanged (www.wikipedia.com).

Factor Analytic and Latent Class Models Perhaps the most illustrative example of how factor analysis has been applied in clinical child and adolescent psychiatric/developmental diagnosis comes from the much-researched – and used – material developed by Thomas Achenbach (originally with colleague Edelbrock), often referred to as the “Child Behavior Checklist” (CBCL) or the ASEBA (Achenbach System of Empirically Based Assessment; Achenbach et al. 2008). The CBCL/1.5–5 and the CBCL/6–18 includes

of Empirically Based Assessment; Achenbach et al. 2008). The CBCL/1.5–5 and the CBCL/6–18 includes 99/118 problem items that can be scored by parents of children aged 1–18 years. The items refer to problem behaviors and emotions often encountered in children. A total problem score (comprising an internalizing and an externalizing score) is computed by adding scores for individual items. Subscores for aggressive behavior, anxious/depressed, attention problems, rule-breaking behavior, social

for aggressive behavior, anxious/depressed, attention problems, rule-breaking behavior, social problems, somatic complaints, thought problems, and withdrawn/depressed can also be calculated. The six DSM-oriented scales are affective problems, anxiety problems, somatic problems, attention deficit/hyperactivity problems, oppositional defiant problems, and conduct problems. The preschool 99-item version for 1.5–5-year-olds also has a DSM-oriented scale for autism/“pervasive developmental

version for 1.5–5-year-olds also has a DSM-oriented scale for autism/“pervasive developmental disorder.” Several studies have shown that combinations of subscales and individual items on the CBCL have good sensitivity and specificity for ASD in school-age children. In addition to the CBCL for parent rating, there is a related Teacher’s Report Form (TRF) and a Youth Self Report (YSR) for 11–18-year-olds.

Each item on the CBCL is given the same weight in the scoring system. The various subscales have been developed on the basis of factor and principal component analytic studies, and the DSM-oriented scales have been developed on the basis of a combination of statistical and clinical studies. One of the problems with the factor analytic approach relates to the fact that many of the individual items are completely unrelated and clearly do not have the same clinical weight. In fact, it can be

items are completely unrelated and clearly do not have the same clinical weight. In fact, it can be argued that the individual items represent 118 different problems and that the subscales, to a considerable extent, represent artificial statistically derived constructs that do not necessarily correspond to recognizable clinical entities (in spite of having been assigned names that would suggest a clear correlation between the research and clinical concept). This problem is not unique to the

a clear correlation between the research and clinical concept). This problem is not unique to the development of the CBCL (and related material) but applies equally to a number of other much used scales, including those with subscales or full scales designed for screening and diagnosis of autism, for example, the Strengths and Difficulties Questionnaire (SDQ) (Goodman 1999) and the Autism Spectrum Screening Questionnaire (ASSQ) (Ehlers and Gillberg 1993).

Signal Detection Models and Receiver Operating Characteristic (ROC) Many diagnostic systems are used to distinguish between two classes of events, essentially “signals” and “noise,” or “diagnosis” and “no diagnosis.” For such systems, analysis in terms of the “relative (or receiver) operating characteristic” (ROC) of signal detection theory provides a fairly precise and valid measure of diagnostic accuracy. It is uninfluenced by decision biases and prior probabilities, and it puts the

diagnostic accuracy. It is uninfluenced by decision biases and prior probabilities, and it puts the performances of diverse systems on a common, easily interpreted scale. The ROC model applied to a diagnostic screening instrument with a wide range of possible scores (such as the CBCL, the SDQ, or the ASSQ) is best presented in a graph detailing the true positive rate (TPR ¼ sensitivity) on the y-axis and the false positive rate (FPR ¼ 1 minus specificity) on the x-axis. The best trade-off for

and the false positive rate (FPR ¼ 1 minus specificity) on the x-axis. The best trade-off for diagnostic purposes is usually seen at the point where the TPR is highest and the FPR lowest, that is, at the inflection point on the curve. The value of TPR times FPR at this point represents the area under the curve (AUC). When the AUC approaches 1.0, the diagnostic precision of the screening instrument is excellent, but when it approaches 0.5, the precision is extremely poor. The use of the AUC

is excellent, but when it approaches 0.5, the precision is extremely poor. The use of the AUC concept as a measure in the evaluation of new diagnostic screening tools has become something of a “gold standard” in recent years.

Continuous Distribution Models Many human traits, functions, or markers of functional systems can be construed as existing on a normal distribution scale which will be relatively smooth when the range of possible scores is large. “Abnormality” is often defined as a specified distance from the mean or median score of such a scale (e.g., ± 2 standard deviations from the mean or under or over the second/98%). A disease or pathological state can be construed as existing when the value of a marker

A disease or pathological state can be construed as existing when the value of a marker for a biological or psychological function is below a specified level (such as in pathological shortness/“dwarfism” or intellectual developmental disorder/mental retardation) or above a set limit (such as in hyperthyroidism).

Much can be said for diagnosing a number of psychiatric disorders along continuous distribution curves. Autism spectrum disorder (ASD), intellectual developmental disorder, and attention-deficit/hyperactivity disorder (ADHD) are but three examples of “disorders” that can, in many instances, be seen as extremes of “conditions” that exist along a normally/continuously distributed spectrum (Posserud et al. 2006). However, problems arise when it comes to specificity and determining exactly which

et al. 2006). However, problems arise when it comes to specificity and determining exactly which specific trait should be considered the key marker function for the disorder. For instance, in ADHD, it is still not possible to determine whether attention, activity, or impulsivity aspects/functions should be considered core features of the “disorder.” Similarly, in ASD, it is not possible to assess the core quality of repetitive behaviors or, for that matter, perceptual functions, when it comes

the core quality of repetitive behaviors or, for that matter, perceptual functions, when it comes to delineating the “syndrome” of ASD. In the latter case – to “fully cover” the clinical spectrum of the “autistic state” in a given individual – it might be necessary to provide centile values for three or more continuous distribution curves, for example, empathy, central coherence, and rigidity-flexibility, and this would entail a great deal of conceptual and practical problems in clinical

and this would entail a great deal of conceptual and practical problems in clinical practice.

There are other problems with the continuous distribution model. First, it is as difficult to reasonably determine cutoff for abnormality under this model as it is in the general medical model of categorical disorders. Second, there are quite a number of instances, for instance, in ASD, when the model is totally inappropriate. It would not be correct or logical to categorize a case of autism caused by herpes encephalitis as being on a distribution curve shading into “normality.” Third, and not

by herpes encephalitis as being on a distribution curve shading into “normality.” Third, and not the least, there is a need for quick and dirty labels such as ASD and ADHD, much like there is a need for terms like “fever” and “pneumonia” (imprecise and even more vague terms than those used in neuropsychiatry). One of the most important features of a diagnostic label is its “door-opening” quality; by having a label, one will have easy access to knowledge. Having been given a percentage on a

by having a label, one will have easy access to knowledge. Having been given a percentage on a normal distribution curve, or worse, multiple different percentages on different curves will possibly be closer to “the truth” but will often lead to more confusion than clarity. Having said this, the continuous distribution model has much to offer in second-level diagnostics: once a diagnosis of, for instance, ASD has been made, providing information about the individual’s level of functioning on a

instance, ASD has been made, providing information about the individual’s level of functioning on a number of continuous distribution curves might actually help create a much more detailed (and holistic) view of that person’s functioning.

Current Knowledge The DSM with a Particular Focus on Autism As more and more research has documented the dimensional nature of so many core psychiatric disorders (including autism), the rigid structure and algorithmic nature of the DSM have come under increasing criticism. The inclusion of dimensional elements in the psychiatric diagnostic systems has been advocated for many years. However, it has been resisted due to concerns about clinical utility. The categories in DSM are prototypes; a

has been resisted due to concerns about clinical utility. The categories in DSM are prototypes; a patient with a close approximation to the prototype is said to have that disorder. Each category of disorder has a numeric code taken from the ICD system, used for administrative purposes. One problem with this approach to diagnosis is that it does not properly deal with all those instances when a patient is severely impaired but does not meet all the criteria for a given discrete disorder. Every

is severely impaired but does not meet all the criteria for a given discrete disorder. Every day in clinical practice (and in research), this is illustrated by diagnosis in the field of autism and related disorders. Many Western societies now have legislation specifically for autism. This means that having a “correct” diagnosis (i.e., one that fits with federal legislation) is extremely important. In needy clinical patients and in research prevalence studies, the categorical nature of the DSM

In needy clinical patients and in research prevalence studies, the categorical nature of the DSM system can be the arbiter between help and no help in terms of service provision and between case and noncase in epidemiological studies. The way in which authors have articulated the multiple manifestations of autism has differed over time. Progress has been made in recent years, and this has brought about a convergence on a shared definition of autism, including methods of assessment that are

about a convergence on a shared definition of autism, including methods of assessment that are acceptable to workers from clinical and research centers across the world. Structured interviews (e.g., the DISCO-11, the ADI-R, and the ASDI) and observation schedules (including the ADOS-G) have brought organizational focus to the traditional psychiatric interview and developmental assessment. Such methods have provided a stricter format and directions to the interviewer, which, in turn, have

methods have provided a stricter format and directions to the interviewer, which, in turn, have enabled systematic assessment of all the criteria necessary for a diagnosis according to the given diagnostic (e.g., DSM) system. Having a consensually shared set of diagnostic criteria as well as structured assessment devices has helped ensure a more common unit of analysis in clinical practice and research across the globe. Though most workers would consider the operationalization of diagnostic

research across the globe. Though most workers would consider the operationalization of diagnostic criteria as an advance in psychiatry and developmental medicine, there remain concerns about the impact that the quest for increased diagnostic reliability might have on validity.

Current Clinical Practice and Research Use of the DSM The DSM is primarily concerned with the symptoms and behavioral manifestation of mental disorders. With the exception of a small number of disorders (including “reactive attachment disorder”), it does not generally attempt to analyze or explain the conditions included in the manual. The DSM-IV organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability. Appropriate use of the DSM

levels (axes) relating to different aspects of disorder or disability. Appropriate use of the DSM diagnostic criteria requires extensive clinical training, and its contents cannot be applied in a cookbook fashion. There is a risk that patients and nonmedical professionals may use the DSM in a checklist fashion and make “diagnosis” according to number of checked symptoms. It needs to be stressed that the DSM is a manual for medical psychiatric diagnosis. In practice, this means that it can only

the DSM is a manual for medical psychiatric diagnosis. In practice, this means that it can only be used by highly skilled professionals making a definitive clinical diagnosis (i.e., medical doctors with specialist training in psychiatry and for some disorders, including autism, ADHD, DCD, etc., those with training in neurology and developmental medicine). Other, highly skilled, professionals use the DSM in clinical research. However, research diagnoses should not uncritically be equated with

the DSM in clinical research. However, research diagnoses should not uncritically be equated with clinical diagnoses, and if a psychiatrist or other specifically trained medical doctor has not been involved in the diagnostic process, the “DSM diagnosis” should not be considered a psychiatric or medical diagnosis.

The DSM-5 published proposed diagnostic criteria in 2010 and revised proposed criteria in 2011. There was opportunity for specialists and the general public to react to these, and criteria were revised in the process. Once this was accomplished, the criteria were then tested in field trials. The results of these trials are not at hand at the publication of this volume. Although the DSM-5 may move away from this categorical approach in some limited areas, some argue that a fully dimensional

move away from this categorical approach in some limited areas, some argue that a fully dimensional spectrum or complaint-oriented approach would better reflect the evidence (Krueger et al. 2005). Nevertheless, it is very difficult to envisage an overall change leading to fully dimensional diagnostics in psychiatry, given that it would not only be very difficult in practice but that it would entail a break with the tradition of categorical medical diagnosis that has a history of thousands of

a break with the tradition of categorical medical diagnosis that has a history of thousands of years.

Alternative Diagnostic Categories and Systems Multiple Complex Developmental Disorder (MCDD) The concept of MCDD was introduced by Donald Cohen (Towbin et al. 1993) in an attempt to “define and validate criteria for an early onset, chronic syndrome of disturbances in affect modulation, social relatedness, and thinking.” This syndrome, combining elements of autism, psychosis, and affective disorder, was considered possible to delineate and to be related to earlier onset of symptoms, very poor

was considered possible to delineate and to be related to earlier onset of symptoms, very poor social and overall functioning, often long periods of inpatient treatment, and poor outcome. The following diagnostic criteria for MCDD (or multiplex developmental disorder) have been suggested by the Yale Autism Study Group: (1) impaired social behavior/sensitivity, similar to that seen in autism, such as (a) social disinterest, (b) detachment, avoidance of others, or withdrawal, (c) impaired peer

as (a) social disinterest, (b) detachment, avoidance of others, or withdrawal, (c) impaired peer relations, (d) highly ambivalent attachments, (e) limited capacity for empathy or understanding what others are thinking or feeling; (2) affective symptoms, including (a) impaired regulation of feelings, (b) intense, inappropriate anxiety, (c) recurrent panic, (d) emotional lability without obvious cause; (3) thought disorder symptoms, such as (a) sudden, irrational intrusions on normal thoughts,

cause; (3) thought disorder symptoms, such as (a) sudden, irrational intrusions on normal thoughts, (b) magical thinking, (c) confusion between reality and fantasy, (d) delusions such as paranoid thoughts or fantasies of special powers. A few studies have tried to examine the relative proportion of MCDD cases within the broader category of ASD. They have found the “condition” to be rare, accounting for fewer than one in ten of all relatively high-functioning cases (Sturm et al. 2004). It is

for fewer than one in ten of all relatively high-functioning cases (Sturm et al. 2004). It is clear that the combination of problems subsumed under the MCDD heading exists in a small number of individuals and that those affected are very severely impaired. However, studies that have attempted to separate out children with MCDD from those with other “variants” of PDD or schizophrenia have usually not been able to clearly differentiate them from those with other diagnoses. Nevertheless, MCDD, if

not been able to clearly differentiate them from those with other diagnoses. Nevertheless, MCDD, if it will remain as an alternative category, is a diagnostic label that will only be applied in a limited number of patients presenting with ASD symptomatology. In some ways, it resembles the DAMP concept (see below) in that it could possibly be categorized as the concomitant presence of two “discrete” disorders, namely, ASD and schizophreniform disorder.

Deficits in Attention, Motor Control, and Perception (DAMP) The concept of DAMP was introduced by I Carina Gillberg (1987). It refers to the combination of problems in the domain of attentional abilities and motor-perceptual capacities in individuals who do not meet criteria for cerebral palsy. She and her colleagues had researched the clinical concept of minimal brain dysfunction (MBD) for a long time and had found that children thus diagnosed usually had this particular combination of

a long time and had found that children thus diagnosed usually had this particular combination of problems (referred to as “perceptual, motor, and attentional deficits” as early as 1982). In later publications (e.g., Kadesjö and Gillberg 1999; Rasmussen and Gillberg 2000), DAMP was seen to correspond to the combination of ADHD and DCD. Gillberg (1983) noted that “severe” DAMP was strongly associated with marked autistic features and found that a large proportion of those diagnosed with “DAMP

with marked autistic features and found that a large proportion of those diagnosed with “DAMP with autistic features” (¼ADHD + DCD + autistic traits) actually met full diagnostic criteria for Asperger syndrome. DAMP, when defined as the combination of ADHD and DCD, is a common clinical problem (affecting several percent of all school-age children) that has well-documented ramifications both as regards need for intervention and prognosis (Rasmussen and Gillberg 2000). There are about 50

as regards need for intervention and prognosis (Rasmussen and Gillberg 2000). There are about 50 publications in the scientific literature. Stimulant treatment, cognitive behavioral therapy, special education measures, and occupational therapy are likely to be needed in any intervention program. Autistic features are very common and may need special approaches, and there is usually a speech and language component to be taken into account when designing the intervention plan. DAMP has been an

language component to be taken into account when designing the intervention plan. DAMP has been an accepted alternative clinical diagnostic concept in the Scandinavian countries for many years. However, given its literal meaning when read out as a word rather than as an acronym, it is unlikely that it will become generally accepted as an internationally used diagnostic concept. However, the insight into the common comorbidity of ADHD with DCD (and of these two problem types with ASD) and the

into the common comorbidity of ADHD with DCD (and of these two problem types with ASD) and the gradually growing awareness among clinicians that DCD is often a problem that should be treated “in its own right” will probably lead to acceptance of the importance of the underlying construct.

Disorders of Empathy In the early 1990s, Gillberg launched the label of disorders of empathy and suggested that empathy and theory of mind were concepts that referred to closely related or perhaps even identical human functions (Gillberg 1992). He also proposed the concept of an empathy quotient (EQ) that might be used in a fashion similar to IQ when thinking about how ASD and related disorders could best be delineated from each other, from autistic traits and so-called normality. It was

could best be delineated from each other, from autistic traits and so-called normality. It was envisaged that a battery of tests of empathy including precursors of and mature-level theory of mind (and possibly subtests of facial recognition, central coherence, and set-shifting) would be developed so that disorders within the field could be diagnosed along a scale where an EQ of 70 might be set to demarcate cutoff for milder disorders (including that associated with the “Asperger phenotype”) and

demarcate cutoff for milder disorders (including that associated with the “Asperger phenotype”) and an EQ of 50 for more severe disorders (including the phenotype of “classic autism”). Unfortunately, even though progress has been made regarding the understanding of the relationship between theory of mind, central coherence, executive function, and various types of disorders, no “IQ-similar” EQ-test battery has been developed over the past two decades. Nevertheless, the concept of disorders of

battery has been developed over the past two decades. Nevertheless, the concept of disorders of empathy (with autistic traits blending into “normality”) has gained considerable theoretical support over the last 20 years. It is still envisaged that having access to a test battery covering the basic functions and dysfunctions that have been shown to be clearly related to autistic symptoms would be extremely helpful and would pave the way for a “real” alternative ASD diagnostic system, clearly

be extremely helpful and would pave the way for a “real” alternative ASD diagnostic system, clearly conceptually different from the one that will still be espoused in the DSM-5.

Nonverbal Learning Disability The concept of nonverbal learning disorder or disability was introduced in a book by Rourke in 1988 and in an influential paper in 1989 (Rourke et al. 1989). The “diagnosis” – which is not in any of the official diagnostic manuals – rests on a considerable discrepancy between verbal and nonverbal skills on tests in individuals who are relatively proficient in expressive language skills. Affected individuals are often motor clumsy, perceptually abnormal, socially

language skills. Affected individuals are often motor clumsy, perceptually abnormal, socially awkward, “dyspraxic,” and with poor pragmatic skills (in spite of sometimes superior formal verbal skills). Rourke has suggested that the overlap between nonverbal learning disability and ASD/Asperger syndrome is substantial. Several studies have attempted to delineate the boundaries between nonverbal learning disability on the one hand and Asperger syndrome on the other. One study has found a very

learning disability on the one hand and Asperger syndrome on the other. One study has found a very high rate of nonverbal learning disability in young boys with Asperger syndrome; in fact, at least half of all young males with the syndrome had the typical verbal-nonverbal discrepancy (Cederlund and Gillberg 2004). However, when the same individuals were followed up in adult age, only one in five had clear test results indicating persistence of such a discrepancy, meaning that at least half of

had clear test results indicating persistence of such a discrepancy, meaning that at least half of all those who had childhood indicators had “grown out” of “test evidence” of nonverbal problems after adolescence. Some studies have found no indication of a link between the “neuropsychological disorder” and the clinical syndrome of Asperger.

Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations (ESSENCE)

The ESSENCE concept was introduced by Gillberg (2010). The acronym refers to early symptomatic syndromes eliciting neurodevelopmental clinical examinations. Gillberg coined this acronym with a view to alerting clinicians and researchers to the reality of a very large number of children (and their parents) presenting in clinical settings with impairing, persistent symptoms before age 3 (to 5) years – symptoms that will endure and overlap for many years, usually into adulthood – in the fields of

– symptoms that will endure and overlap for many years, usually into adulthood – in the fields of (a) general development, (b) communication and language,(c) social interrelatedness, (d) motor coordination, (e) attention, (f) activity, (g) behavior, (h) mood, and/or (i) sleep. Children with major difficulties in one or more (usually several) of these fields, will be referred to and seen by health visitors, nurses, social workers, education specialists, pediatricians, GPs, speech and language

visitors, nurses, social workers, education specialists, pediatricians, GPs, speech and language therapists, audiologists, child neurologists, child psychiatrists, psychologists, neurophysiologists, dentists, clinical geneticists, occupational therapists, and physiotherapists. Usually they will be seen only by one of these specialists, when they would have needed the input of two or more of the experts referred to. Major problems in at least one ESSENCE domain before age 5 years usually signal

referred to. Major problems in at least one ESSENCE domain before age 5 years usually signal major problems in the same or overlapping domains years later. “There is no time to wait; something needs to be done, and that something is unlikely to be just in the area of speech and language, just in the area of autism or just in special education.”

ESSENCE is not a new proposed diagnosis but represents an alternative way of approaching the problem of diagnosis in “child neuropsychiatry” and “developmental medicine.” At very young ages, children with developmental problems present for diagnosis in a variety of settings, and depending on the type of specialist in charge, one or another of the many possible diagnoses contained in the ESSENCE basket is likely to be made (or not made for that matter). The risk is obvious that only the

basket is likely to be made (or not made for that matter). The risk is obvious that only the diagnosed problem type will be intervened for (or that the child excluded from, say, the autism category will not be worked up for his/her very real ADHD and hence excluded from relevant therapy). ESSENCE may be the “only safe label” at an early age. However, ESSENCE is not a diagnosis but a reminder that the child with that “label” will, sooner or later, have one, two, three, or even more diagnoses

the child with that “label” will, sooner or later, have one, two, three, or even more diagnoses made. ESSENCE is a label that acknowledges the universal coexistence of symptoms and problems across diagnostic borderlines. All the problems need to be addressed, not just those associated with one discrete diagnostic category.

Future Directions The DSM-5 and the ICD-11 Major attempts are being made to streamline the DSM-5 and the ICD-11. Several of the personality disorder categories will be gone from the DSM-5, and a few new categories of psychiatric disorder will be included. It is expected that autism will become one category (no longer referred to as pervasive developmental disorder but, most probably, “autism spectrum disorder”) and that subgrouping will be done on the basis of a number of “nonautism”

spectrum disorder”) and that subgrouping will be done on the basis of a number of “nonautism” demographics such as level of IQ, language competence, and severity. The change reflects increasing awareness that much of the DSM-IV subgrouping of autism was based on attitudes and personal stance rather than empirical evidence. For instance, most systematic studies have not found support for a clear distinction between autistic disorder and Asperger’s disorder. It is also unclear to what extent CDD

between autistic disorder and Asperger’s disorder. It is also unclear to what extent CDD should be seen as different from autistic disorder with regression, and whether or not “mild” or highly atypical cases of PDDNOS are really related to autistic disorder at all.

There are only seven symptoms in the proposed DSM-5 as compared with 12 in the DSM-IV. There are only two subgroups of symptoms rather than three. The change in number of symptoms superficially gives the impression of a major reconceptualization of the whole category. However, on closer inspection, what has been achieved is a pruning of several symptoms that were felt by many to be vague and relatively unimportant or to be hallmarks of other conditions (such as severe learning disability or

unimportant or to be hallmarks of other conditions (such as severe learning disability or severe expressive language disorder), a collapsing of some of the remaining ones, and the addition of a behavioral criterion of perceptual abnormality. Also, the social and communication categories have been collapsed into one. This mirrors the now generally accepted notion that at the root of both the social and communication problems in autism is a shared deficit in intuitive understanding of the meaning

and communication problems in autism is a shared deficit in intuitive understanding of the meaning of reciprocity. Finally, the three specific social-communication symptoms in the DSM-5 must all be met for a diagnosis to be considered (compared to only two out of four in the DSM-IV), and there must be at least five of the seven total number of symptoms met (compared to “only” 6 of the 12 autistic disorder criteria in the DSM-IV). The age criterion has been changed from delay or abnormal

disorder criteria in the DSM-IV). The age criterion has been changed from delay or abnormal functioning being evident before age 3 years (DSM-IV) to symptoms having been present from early childhood (DSM-5). Taken together, it would seem that the proposed DSM-5 might actually restrict somewhat the number of cases of autistic disorder meeting full criteria for autism spectrum disorder compared to the DSM-IV. Also, many of the cases meeting Asperger’s disorder symptom criteria (only three

to the DSM-IV. Also, many of the cases meeting Asperger’s disorder symptom criteria (only three symptoms in total needed in the DSM-IV) and PDDNOS “criteria” (that are really extremely vague) would probably fall short of diagnostic status under the DSM-5. The Gillberg’s Asperger syndrome category would, on the other hand, at least at a glance usually meet criteria for ASD under the DSM-5. However, all of this is, of course, pure speculation at the present time. Changing the diagnostic criteria,

all of this is, of course, pure speculation at the present time. Changing the diagnostic criteria, as with the introduction of the DSM-5 (ICD-11), will definitely lead to changes in numbers of cases diagnosed. This, in the case of autism, will, almost certainly, lead to claims of “autism epidemics” or “autism disappearing” in the headlines of many major newspapers from about 2015 onward. This is the extent of what can be reasonably predicted as a result of the introduction of the new diagnostic

extent of what can be reasonably predicted as a result of the introduction of the new diagnostic manuals.

Comorbidity and the DSM System The term “comorbidity” was introduced in medicine to denote those cases in which a “distinct additional clinical entity” occurred during the clinical course of a patient having an index disease. This term has recently become very fashionable in psychiatry and developmental medicine to indicate not only those cases in which a patient receives both a psychiatric and a general medical diagnosis (e.g., autism and tuberous sclerosis) but also those cases in which a

a general medical diagnosis (e.g., autism and tuberous sclerosis) but also those cases in which a patient receives two or more psychiatric diagnoses (e.g., autism and Tourette syndrome). Gillberg (1983) pointed to this overlap of “discrete” psychiatric diagnoses in young children long before the word “psychiatric comorbidity” came into common parlance. The co-occurrence of two or more psychiatric diagnoses has been reported to be very frequent. For instance, in a general population study, 85%

diagnoses has been reported to be very frequent. For instance, in a general population study, 85% of young children with ADHD had at least one additional DSM diagnosis leading to impairment (Kadesjö and Gillberg 2001). In the case of severe autism, it is virtually impossible to find one single case in which there was no other mental or physical disorder. If a diagnosis of autistic disorder according to the DSM-IV-TR is made, one would have to be on the lookout for intellectual developmental

to the DSM-IV-TR is made, one would have to be on the lookout for intellectual developmental disorder/mental retardation/learning disability, epilepsy, a medical disorder such as tuberous sclerosis or 22q11deletion syndrome, neuropsychiatric disorder such as Tourette syndrome or ADHD, mood disorder, anxiety disorder, eating disorder, sleep disorder, or a specific developmental disorder such as developmental coordination disorder (DCD).

There is a further diagnostic problem stemming from the fact that a majority of these other named disorders have a large subgroup with ASD, that the symptoms of all the disorders first appear and overlap at a very early age, and that it can be very difficult to decide from the start which of the problem types is going to be the “main diagnosis,” that is, the one (or the ones) that will warrant intervention. The acronym ESSENCE has been introduced in order to draw attention to this state of

intervention. The acronym ESSENCE has been introduced in order to draw attention to this state of affairs (Gillberg 2010). The co-occurrence of multiple registered psychiatric diagnoses is now common. This is to some extent due to the use of standardized diagnostic interviews, which helps to identify several clinical aspects that in the past remained unnoticed after the principal diagnosis had been made. Fragmenting a complex clinical condition into several pieces may prevent a holistic

had been made. Fragmenting a complex clinical condition into several pieces may prevent a holistic approach to the individual. An obvious determinant of the emergence of the phenomenon of “psychiatric comorbidity” (see below) has been the proliferation of diagnostic categories in recent classifications. If demarcations are made where they do not “really” exist, the probability that several diagnoses have to be made in an individual case will obviously increase. A coveted tradition in psychiatry

have to be made in an individual case will obviously increase. A coveted tradition in psychiatry and developmental medicine has been to establish a hierarchy of diagnostic categories so that, for example, if autism were present, the possibly concomitant anxiety, depression, or ADHD would not be diagnosed because they would be regarded as part of the clinical picture of autism.

Because everyone has now been using operationalized diagnostic criteria for three decades or more, diagnoses such as autistic disorder have, by some, come to be regarded as more reliable than traditional clinical diagnoses. The old clinical descriptions provided a gestalt of each diagnostic entity. Different emphasis was put on the various clinical aspects, whereas current operational definitions usually give equal weight to a variety of clinical manifestations, counting symptoms rather than

usually give equal weight to a variety of clinical manifestations, counting symptoms rather than weighing them. Traditional clinical assessment demanded arbiter differential diagnosis, whereas current operational definitions really open up for multiple diagnoses (even though the DSM-IV often actively resists this), possibly in part because they are less able to convey the “essence” of each diagnostic entity. Along with the trend as regards reliance on operationalized algorithms for diagnosis,

entity. Along with the trend as regards reliance on operationalized algorithms for diagnosis, has emerged a new insistence on “specific” instruments for these checklist categorical disorders. This is particularly true in autism, where both clinicians and researchers have been overtaken by an industry of diagnostic interviews and observation schedules that purportedly increase the quality of the (single) diagnosis per se. It is important to remember that these instruments were developed on the

(single) diagnosis per se. It is important to remember that these instruments were developed on the basis of studies using gold standard clinical diagnosis and that they will never, in themselves, be better than such diagnoses. It is envisaged that the heyday of these instruments will be over in the next few years and that they will be replaced by measures more accurately acknowledging and reflecting the developmental and overlapping nature of the conditions in question. The frequent

and reflecting the developmental and overlapping nature of the conditions in question. The frequent co-occurrence of the mental disorders has been taken as evidence against the idea that these disorders represent discrete disease entities (Cloninger 2002). The point has been made that psychopathology is usually complex and variable and that what is currently conceptualized as the co-occurrence of multiple disorders could be better reformulated as the complexity of many psychiatric conditions

of multiple disorders could be better reformulated as the complexity of many psychiatric conditions (with increasing complexity being a predictor of greater severity, disability, and service utilization). Even Kraepelin, in one of his later works, dismissed the model of discrete disease entities even for dementia praecox and manic-depressive disorder (Kraepelin 1920).

However, an alternative possibility is that psychopathology does consist of discrete entities, but these entities are not well delineated by current diagnostic categories. If this is the case, then current clinical research on “psychiatric comorbidity” may be helpful in the search for “true” disease entities, contributing in the long term to a rearrangement of present classifications. There is, of course, another possibility, namely, that the nature of psychopathology is intrinsically

is, of course, another possibility, namely, that the nature of psychopathology is intrinsically heterogeneous, consisting partly of disease entities and categorical disorders, and partly of maladaptive response patterns or of exaggeration of traits that are more or less normally distributed in the general population.

ASD in the DSM-IV and the DSM-5 The DSM-IV comprised of five different autism spectrum disorder categories. The DSM-5 contains only one autism category, incorporating autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and PDDNOS into one common coded condition referred to as “ASD” (and leaving, reasonably, Rett syndrome out of the equation). The change reflects increasing awareness that much of the DSM-IV subgrouping of autism was based on attitudes and personal stance

awareness that much of the DSM-IV subgrouping of autism was based on attitudes and personal stance rather than empirical evidence. For instance, most systematic studies have not found support for a clear distinction between autistic disorder and Asperger’s disorder. It is also unclear to what extent CDD should be seen as different from autistic disorder with regression, and whether or not “mild” or highly atypical cases of PDDNOS are really related to autistic disorder at all.

There are only seven symptoms in the proposed DSM-5 as compared with 12 in the DSM-IV. There are only two subgroups of symptoms rather than three. The change in number of symptoms superficially gives the impression of a major reconceptualization of the whole category. However, on closer inspection, what has been achieved is a pruning of several symptoms that were felt by many to be vague and relatively unimportant or to be hallmarks of other conditions (such as severe learning disability or

unimportant or to be hallmarks of other conditions (such as severe learning disability or severe expressive language disorder), a collapsing of some of the remaining ones, and the addition of a behavioral criterion of perceptual abnormality. Also, the social and communication categories have been collapsed into one. This mirrors the now generally accepted notion that at the root of both the social and communication problems in autism is a shared deficit in intuitive understanding of the meaning

and communication problems in autism is a shared deficit in intuitive understanding of the meaning of reciprocity. Finally, the three specific social-communication symptoms in the DSM-5 must all be met for a diagnosis to be considered (compared to only two out of four in the DSM-IV), and there must be at least five of the seven total number of symptoms met (compared to “only” 6 of the 12 autistic disorder criteria in the DSM-IV). The age criterion has been changed from delay or abnormal

disorder criteria in the DSM-IV). The age criterion has been changed from delay or abnormal functioning being evident before age 3 years (DSM-IV) to symptoms having been present from early childhood (DSM-5). Taken together, it would seem that the proposed DSM-5 might actually restrict somewhat the number of cases of autistic disorder meeting full criteria for autism spectrum disorder compared to the DSM-IV. Also, many of the cases meeting Asperger’s disorder symptom criteria (only three

to the DSM-IV. Also, many of the cases meeting Asperger’s disorder symptom criteria (only three symptoms in total needed in the DSM-IV) and PDDNOS “criteria” (that are really extremely vague) would probably fall short of diagnostic status under the DSM-5. The Gillberg’s Asperger syndrome category would, on the other hand, at least at a glance usually meet criteria for ASD under the DSM-5. However, all of this is, of course, pure speculation at the present time. Changing the diagnostic criteria,

all of this is, of course, pure speculation at the present time. Changing the diagnostic criteria, as with the introduction of the DSM-5 (ICD-11), will definitely lead to changes in numbers of cases diagnosed. This, in the case of autism, will, almost certainly, lead to claims of “autism epidemics” or “autism disappearing” in the headlines of many major newspapers from about 2015 onward. This is the extent of what can be reasonably predicted as a result of the introduction of the new diagnostic

extent of what can be reasonably predicted as a result of the introduction of the new diagnostic manuals.

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

Definition This drug (known as 1-adamantylamine or 1-aminoadamantane) was first approved by the FDA in 1966 for the treatment of influenza; its effectiveness for the treatment of symptoms of Parkinson’s disease and drug-induced movement problems (extrapyramidal effects and akathisia) was discovered accidentally. For the treatment of Parkinson’s disease, it is used alone or in combination with other agents. The efficacy of its use for Parkinson’s disease has been questioned in a recent review

agents. The efficacy of its use for Parkinson’s disease has been questioned in a recent review (Crosby et al. 2003). Because of growing resistance, it is not now recommended for use in influenza treatment. There appear to be several mechanisms of action since the agent impacts multiple brain neurotransmitter systems. Central nervous system side effects include anxiety, agitation, and increased seizure activity. Other side effects have included skin problem and suicidal thoughts. The drug has

seizure activity. Other side effects have included skin problem and suicidal thoughts. The drug has been used without FDA approval for various other purposes including in autism. In the largest study, King et al. (2001) treated a group of children and adolescents with amantadine using both parent- and clinician-based report measures in a placebo-controlled study. They noted a large placebo effect overall with clinician ratings but not parent ratings suggesting some possible benefit of the agent

overall with clinician ratings but not parent ratings suggesting some possible benefit of the agent over placebo. Amantadine was well tolerated. The drug remains one of many agents that deserve study in autism.

Linas A. Bieliauskas Department of Psychiatry (F6248, MCHC-6), University of Michigan Health System, Ann Arbor, MI, USA
Membership as of 5/13/20: 1,087 Active, 75 Senior, 643 Affiliate, and 183 Student members.

Mission Statement: AACN is the organization for those psychologists who have achieved board certification in the specialty of Clinical Neuropsychology, by the American Board of Clinical Neuropsychology (ABCN), under the auspices of the American Board of Professional Psychology (ABPP). Board Certification covers neuropsychological aspects of brain-behavior disorders in children, adults, and the elderly. AACN supports continued maintenance of standards in Clinical Neuropsychology through the

elderly. AACN supports continued maintenance of standards in Clinical Neuropsychology through the established board certification process of ABCN. AACN supports the continued development of the ABCN examination process, and advocates for the standards represented by board certification. In addition, Child Subspecialty Certification was added in 2014. Individuals wishing to obtain this certification need to be board certified through ABCN, fill out an added application form, take an added

need to be board certified through ABCN, fill out an added application form, take an added written exam, and undergo an added practice sample review.

Major Activities AACN has an annual meeting open both to members and nonmembers. The meeting includes an extensive continuing education program which will be of interest to all, including special courses for candidates for board certification and for AACN members and others to maintain specialty knowledge. The Clinical Neuropsychologist is the official journal of AACN. In addition to copies of AACN policy statements which can be accessed via the link,

of AACN. In addition to copies of AACN policy statements which can be accessed via the link, https://www.tandfonline.com/toc/ntcn20/current, The Clinical Neuropsychologist publishes all AACN official policies and documents. AACN also includes the journal Child Neuropsychology for all of its members.

Miya Asato Pediatrics and Psychiatry, Division of Child Neurology, School of Medicine, Children’s Hospital of Pittsburgh, University of Pittsburgh, Pittsburgh, PA, USA

Major Areas or Mission Statement American Academy of Neurology (AAN) 1080 Montreal Avenue Saint Paul, MN 55116 (800) 879–1960 www.aan.com Child Neurology Society (CNS) 1000 W. County Road E, Suite 290 Saint Paul, MN 55126 (651) 486–9447 www.childneurologysociety.org The AAN is an international professional association of over 22,000 neurologists and neuroscience professionals dedicated to promoting neurologic care. Members include both adult and child neurologists. The AAN is the primary

neurologic care. Members include both adult and child neurologists. The AAN is the primary professional society for clinical neurologists. It is dedicated to maintaining awareness among its membership of clinical and scientific advances that impact clinical care and to providing educational opportunities for maintaining the knowledge and skills of its members. The AAN also commissions subcommittees to develop practice guidelines that disseminate the state of the science on specific clinical

to develop practice guidelines that disseminate the state of the science on specific clinical issues that confront neurologists in their daily practices. The CNS is a professional association of pediatric neurologists and developmental pediatricians in the United States, Canada, and worldwide devoted to optimizing the care of children with neurological and neurodevelopmental disorders. There are over 1500 members. Like the AAN, the CNS has an annual meeting with a program designed to

There are over 1500 members. Like the AAN, the CNS has an annual meeting with a program designed to disseminate the latest scientific and clinical advances related to child neurology and to maintain the skills and knowledge of its clinicians. The CNS provides practice guidelines, maintenance of certification support, and CME programming in child neurology and developmental pediatrics, including autism. The AAN and CNS are dedicated to promoting the highest quality patient-centered neurologic

autism. The AAN and CNS are dedicated to promoting the highest quality patient-centered neurologic care and enhancing member competence and career satisfaction.

Major Activities The AAN and CNS provide scientific and clinical education for its members in many formats, commission the development of practice guidelines to support improved standards of care, and public leadership and advocacy for individuals impacted by neurologic and neurodevelopmental disorders. Both organizations have provided educational sessions and practice guidelines on autism and on many related/overlapping issues.

Susan Hyman Developmental and Behavioral Pediatrics, Division Chief Neurodevelopmental and Behavioral Pediatrics, University of Rochester Golisano Children’s Hospital, Rochester, NY, USA

Major Areas or Mission Statement Membership as of August 2017: Approximately 66,000 members in the United States, Canada, Mexico, and internationally including pediatricians, pediatric subspecialists, and surgical subspecialists belong to the American Academy of Pediatrics (AAP). Thirty-four thousand members are Board Certified in Pediatrics and can be listed as Fellows of the American Academy of Pediatrics or FAAP.

Major Areas or Mission Statement: “The mission of the AAP is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. To accomplish this mission, the AAP shall support the professional needs of its members.”

Landmark Contributions It was not until the late 1800s that the care of children began to emerge as a separate area of specialization within medicine. The recognition that growth and development, nutrition, and prevention of infectious diseases in increasingly urbanized communities required focused research led to the founding of the American Pediatric Society in 1888. The increasing number of physicians who limited their practices to the primary care of children in office settings resulted in

who limited their practices to the primary care of children in office settings resulted in the formation of the American Medical Association section on pediatrics in 1880. Proposed federal legislation to provide matching funds to states for infant welfare clinics was supported by the American Medical Association section on pediatrics in 1922, but not the leadership of the American Medical Association who saw it a potential initial step to socialized medicine. The commitment by physicians who

who saw it a potential initial step to socialized medicine. The commitment by physicians who cared for children to advocate for the welfare of children led to the formation of an independent organization, the American Academy of Pediatrics, in 1929. The original 35 members met in Detroit to establish a professional organization that recognized that the needs for disease prevention and health promotion in children were different than those for adults. In 1930, there were 304 members.

The AAP set out to support and develop the field of pediatrics. The Journal of Pediatrics began publication in 1932 and was the official journal until Pediatrics assumed that status in 1948. In collaboration with the American Pediatric Society and the AMA section on pediatrics, the AAP supported development of the American Board of Pediatrics in 1934 as an independent organization to establish formal training criteria and certification of expertise in the specialty of pediatrics as well as to

training criteria and certification of expertise in the specialty of pediatrics as well as to approve and certify subspecialists within pediatrics. Specialists and subspecialists must now demonstrate an ongoing commitment to professional education and incorporate quality improvement into their practices to maintain certification.

The AAP has major initiatives regarding the education of professionals and of the public on disorders of childhood in addition to advocacy for the health and well-being of children and families including areas as diverse as disease prevention, behavioral health, education, and the environment. Publications such as the Red Book guide practice related to immunization and management of infectious diseases. The efforts of the AAP have been critical in the passage of legislation such as supporting

The efforts of the AAP have been critical in the passage of legislation such as supporting health insurance for children (SCHIP) and Head Start. The policies and recommendations of the AAP guide the health care provided to children by pediatricians and serve to advise other organizations and agencies. In addition to the headquarters in Elk Grove Village, Illinois, it maintains an office in Washington, DC.

Major Activities The AAP’s major activities address member education, public education, advocacy for children and youth, and promotion of community-based research and demonstration projects. Organization: The AAP is divided into 10 regional districts and 59 state chapters each with elected officials who represent the chapters in the national organization. It is also organized by interest areas within pediatrics into 13 councils and 52 sections. Twenty-seven committees advise the elected

within pediatrics into 13 councils and 52 sections. Twenty-seven committees advise the elected leadership of the AAP in the development of the AAP’s positions and programs. Committees have interests as varied as injury and poison prevention, children with disabilities, sports medicine, nutrition, and child health financing. Activities related to autism are primarily managed by the Council on Children with Disabilities, and its Autism Subcommittee, and the Section on Developmental and Behavioral

with Disabilities, and its Autism Subcommittee, and the Section on Developmental and Behavioral Pediatrics. Other groups with specific interests related to autism include the sections on General Pediatrics in Office Settings, Complementary, Holistic, and Integrative Medicine; Genetics; Gastroenterology, Hepatology, and Nutrition; Injury, Violence, and Poison Prevention; and Neurology and the Council on Environmental Health.

Education: The AAP coordinates continuing education courses, annual scientific meetings, seminars, and online education for pediatricians to address ongoing educational needs. It publishes the journal Pediatrics to promote academic understanding of the health needs of children and youth. It also publishes Pediatrics in Review as a journal for continuing education, AAP News as a member’s news magazine, and manuals on topics important to child health such as infectious diseases and school

magazine, and manuals on topics important to child health such as infectious diseases and school health. Books are written for families on topical areas such as toilet training, Attention Deficit Hyperactivity Disorder, and others. Brochures on many areas relevant to child health, development, behavior, and safety are available to pediatricians to provide information to their patients. To assist child health professionals and policy makers, the AAP committees prepare technical reports and

child health professionals and policy makers, the AAP committees prepare technical reports and policy statements to summarize current information for the providers and recommend health-care practices. Policies which recommend practice and clinical reports that summarize the medical literature are posted on the AAP website. Publications related to autism include the informational brochures for families on autism and language delays published in 2007. That year, two clinical reports were

for families on autism and language delays published in 2007. That year, two clinical reports were published in Pediatrics on the assessment and the management of children with autism. Policies of related interest include developmental screening (2006), use of complementary and alternative medicine by children with chronic illness (2001), learning disabilities, dyslexia, and vision (2011). The Autism Toolkit was revised in 2012. A full listing is accessible at www.aap.org. Public Education:

Autism Toolkit was revised in 2012. A full listing is accessible at www.aap.org. Public Education: Educational materials for families on common topics are published for distribution in the context of anticipatory guidance in well–child care and as information related to specific concerns, as well as books on topics such as toilet training and ADHD. Web-based information for families is a priority of the www.healthychildren.org website.

Advocacy: The AAP has an office in Washington, DC that advocates at the federal level for children’s health needs in emerging policies and legislation. AAP staff assist the state chapters of the AAP in state and local advocacy around issues such as child safety legislation, Autism insurance legislation, and insurance legislation that assure access to care for low-income children. Research: Through the Pediatric Research in Office Settings (PROS) network and CATCH grant mechanisms, the AAP

the Pediatric Research in Office Settings (PROS) network and CATCH grant mechanisms, the AAP promotes research in the community that addresses health needs as well as program development. Interest areas include social, economic, and behavioral research in addition to provision of medical care and disease prevention.

Marc J. Tassé1 and Matthew Grover2 1Nisonger Center – UCEDD, Departments of Psychology and Psychiatry, The Ohio State University, Columbus, OH, USA

2Otterbein University, Westerville, OH, USA  Major Areas or Mission Statement The American Association on Intellectual and Developmental Disabilities (AAIDD) is an interdisciplinary professional society of members who have a professional focus in the area of intellectual and developmental disabilities. The AAIDD counts approximately 3,500 interdisciplinary professionals as its members. The membership structure includes professionals working in the field of intellectual disability and related

structure includes professionals working in the field of intellectual disability and related developmental disabilities. Members can select from a tiered membership menu: basic, classic, standard, premium, and corporate. AAIDD is primarily a North American professional association, but it also offers an “international” membership option and has international members from 55 countries. The corporate membership is available to centers or agencies who may join, garnering a reduction on membership

membership is available to centers or agencies who may join, garnering a reduction on membership dues for the employees affiliated with the corporate member. Association members have the option of joining any of its 21 special interest groups (e.g., administration, education, psychology, health and wellness, criminal justice, etc.).

Mission Statement AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
 AAIDD Has Adopted a 7-Point Set of Principles (or Core Values) Relative to Its Mission
* Cultivate and provide leadership in the field of intellectual and developmental disabilities that encompasses a diversity of disciplines, cultures, and perspectives.

* Enhance the skills, knowledge, rewards, and conditions of people currently working in the field and encourage promising students to pursue careers in the field of intellectual and developmental disabilities.
* Advance basic and applied research to prevent or minimize the effects of intellectual and developmental disabilities.
* Advance the assurance of all human rights of people with intellectual and developmental disabilities, including equality, individual dignity, choice, and respect.

* Promote genuine accommodations to expand participation in all aspects of life for people with intellectual and developmental disabilities, opportunities for choice and self-determination, and access to quality health, education, vocational, and other human services and supports.
* Influence positive attitudes and public awareness to contributions of people with intellectual and developmental disabilities.

* Establish partnerships and strategic alliances with organizations that share our values and goals.
 AAIDD’s Goals 1.  Enhance the capacity of professionals who work with individuals with intellectual and developmental disabilities.
2.  Promote the development of a society that fully includes individuals with intellectual and developmental disabilities.
3.  Sustain an effective, responsive, well-managed, and responsibly governed organization.

Landmark Contributions AAIDD was founded in 1876 and has since been the leader in setting the practice standards; publishing books, tests, and other resources; and influencing policy. AAIDD’s first president in 1876 was the French physician Édouard Séguin, MD, regarded by many as the father of special education in the USA. The AAIDD has led the field in establishing the definition and diagnostic criteria for intellectual disability for over a century. It is well established that a significant

criteria for intellectual disability for over a century. It is well established that a significant proportion of individuals with an autism spectrum disorder also have a co-occurring diagnosis of intellectual disability. Since its first definition of intellectual disability in 1910, AAIDD has revised its definition ten times to reflect the changes in research and understanding of this condition (currently in its 11th edition). The AAIDD definition of intellectual disability has historically

(currently in its 11th edition). The AAIDD definition of intellectual disability has historically been adopted by all federal and state governments as well as the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) in defining intellectual disability. AAIDD is considered the professional authority in the area of intellectual disability.

In examining the history of the AAIDD, one quickly discovers that the organization has undergone a number of changes since it was founded in 1876. The chief among these changes is the position of the organization with regard to issues such as (a) etiology of the disability, (b) systems of classification, and (c) systems of support/intervention. The AAIDD was founded by a small group of superintendents of institutions for people with disabilities. The AAIDD’s first annual meeting was held at

of institutions for people with disabilities. The AAIDD’s first annual meeting was held at the Pennsylvania Training School for Idiotic and Feebleminded Children (now called Elwyn) in Media, PA, on June 6, 1876 (Sloan and Stevens 1976), where it was founded under the name of “Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons” (Sloan and Stevens). The Association’s first constitution provided a framework for the goals of the association during its

Association’s first constitution provided a framework for the goals of the association during its earliest days (Sloan and Stevens 1976, p. 1): Article II: The object of the association shall be the discussion of all questions relating to the causes, conditions, and statistics of idiocy and to the management, training, and education of idiots and feebleminded persons; it will also lend its influence to the establishment and fostering of institutions for this purpose.

Although the association’s policies have evolved over time, the common goal of reaching a better understanding of intellectual disability and serving to improve the lives of people with intellectual disability has remained unchanged throughout the years. Changes in the association’s name serve as somewhat of a barometer for the shifting attitudes toward people with intellectual disability within our society at large. The association name changes have largely been driven by a move away from

our society at large. The association name changes have largely been driven by a move away from historical terminology that has acquired increasingly pejorative connotations. In 1910, the name of the association was changed to “American Association for the Study of the Feebleminded.” This was the first of the several name changes for the association. The name was changed again in 1933 to “American Association on Mental Deficiency” (AAMD), which remained until 1987, when it officially became

Association on Mental Deficiency” (AAMD), which remained until 1987, when it officially became known as the “American Association on Mental Retardation.” The most recent change came in 2007, bringing with it the current name “American Association on Intellectual and Developmental Disabilities.” This change was driven by the increasing acceptance of “intellectual disability” as the replacement terminology for mental retardation. AAIDD also chose to include “developmental disabilities” in its

terminology for mental retardation. AAIDD also chose to include “developmental disabilities” in its name to reflect its mission and influence in areas such as autism spectrum disorder, cerebral palsy, and other related developmental disabilities.

A landmark change brought about by AAIDD was in 1959 when it introduced the construct of adaptive behavior into its definition of intellectual disability (Heber 1959). The 1959 AAIDD terminology and classification manual first introduced deficits in adaptive functioning as part of the diagnostic criteria for intellectual disability. All other major diagnostic systems (e.g., World Health Organization’s International Classification of Diseases, American Psychiatric Association’s Diagnostic and

International Classification of Diseases, American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders) as well as federal and state agencies followed suit. AAIDD also published the first standardized measure of adaptive behavior in 1969 – titled the AAMD Adaptive Behavior Scale (Nihira et al. 1969).

AAIDD has long been active in influencing legislation and social action toward improving treatment and supports for people with intellectual and developmental disabilities. Throughout the years, AAIDD has served as amicus curiae in many cases regarding the rights of people with intellectual disability (Croser 1999; Herr 1999). James W. Ellis, JD, a Professor of Law at the University of New Mexico and past president of AAIDD, successfully argued before the US Supreme Court (Atkins v. Virginia

and past president of AAIDD, successfully argued before the US Supreme Court (Atkins v. Virginia 2002) that the execution of people with ID was cruel and an unusual punishment. The Atkins v. Virginia Supreme Court ruling led to the banning of capital punishment for all people diagnosed with ID and upheld in two subsequent Supreme Court decisions (e.g., Hall v. Florida 2014; Moore v. Texas 2017). AAIDD was prominently mentioned in the 2002 Atkins v. Virginia as well as both follow-up Supreme

AAIDD was prominently mentioned in the 2002 Atkins v. Virginia as well as both follow-up Supreme Court decisions as a leading national organization in setting the national consensus regarding the definition and diagnosis of intellectual disability.

Major Activities The association offers a wide array of trainings, including an annual professional meeting. AAIDD publishes books, journals, assessment instruments, and training materials. Among its publications, AAIDD publishes two of the mostly highly cited professional journals in the field of disabilities: American Journal on Intellectual and Developmental Disabilities and Intellectual and Developmental Disabilities. Many of its publications have been translated into dozens of languages

Developmental Disabilities. Many of its publications have been translated into dozens of languages and are disseminated and used worldwide.

Erin Loring Yale Department of Genetics, New Haven, CT, USA  Major Areas or Mission Statement American Board of Genetic Counseling (ABGC) Mission Statement The American Board of Genetic Counseling establishes standards of competence through accreditation of graduate training programs and certification and recertification of genetic counselors to advance the profession and protect the public.

Membership Currently there are 3,026 ABGC Certified Genetic Counselors. The American Board of Genetic Counseling is a nonprofit organization incorporated in 1993 as the accrediting and credentialing body for the genetic counseling profession. The ABGC credential, Certified Genetic Counselor (CGC®), identifies counselors who have met established standards for graduate training with practical clinical experience, passed a comprehensive genetic counseling board examination, and demonstrate a

clinical experience, passed a comprehensive genetic counseling board examination, and demonstrate a commitment to maintain knowledge through recertification. The ABGC credentials have become recognized as the gold standard in the health care industry. The ABGC organization is led by ten elected board members who serve a 5-year term. Board

state that the DAP:IQ is designed to “improve the pervasive practice of evaluating human figure drawings as a measure of cognitive ability” (Examiner’s manual, p. v) and further suggest that it is appropriate for large screening efforts, in part because it lacks significant language demands and cultural bias. However, because carefully constructed brief IQ measures that assess a wider array of skills have been developed (e.g., Kaufman Brief Intelligence Test – Second Edition, Reynolds

of skills have been developed (e.g., Kaufman Brief Intelligence Test – Second Edition, Reynolds Intellectual Screening Test, and Wechsler Abbreviated Scale of Intelli-gence) and because the DAP:IQ correlates only moderately with more comprehensive measures of intelligence, aptitude, and achievement, it does not seem advisable to use the DAP:IQ to assess cognitive ability or to make placement decisions. It still may be useful to clinicians who utilize drawings as a means of building rapport or

It still may be useful to clinicians who utilize drawings as a means of building rapport or facilitating conversation.

Hyperlexia Adam Naples1 and James C. McPartland2 1Yale Child Study Center, Yale University, New Haven, CT, USA 2School of Medicine, Child Study Center, Yale University, New Haven, CT, USA  Synonyms Reading comprehension disorder  Short Description or Definition “Hyperlexia” is a term used, most often, to describe skilled word reading, that is, decoding print to speech, in the absence of concomitant reading comprehension ability. Hyperlexia is not a formal diagnosis; thus, the term is used

reading comprehension ability. Hyperlexia is not a formal diagnosis; thus, the term is used inconsistently to describe a heterogeneous group of individuals. These descriptions most often refer to individuals whose reading decoding skills exceed their reading comprehension skills, usually assessed via a discrepancy in standard scores. However, other descriptions include individuals with ASD who exhibit precocious reading ability across both decoding and comprehension. Consequently, hyperlexia

exhibit precocious reading ability across both decoding and comprehension. Consequently, hyperlexia can refer to individuals with above average reading comprehension and even further above average reading decoding skills as well as individuals with poor reading decoding skills and even poorer reading comprehension skills, for example, individuals who can successfully read aloud but may have no functional language and profound intellectual disability. There is no “gold standard” for defining

functional language and profound intellectual disability. There is no “gold standard” for defining hyperlexia. Nevertheless, the common depiction of an individual with hyperlexia is a child with an autism spectrum disorder, who begins reading words at a very early age without explicit instruction and without any apparent comprehension of the text.

Categorization The current characterization of hyperlexia, and the operational definition most often used, is an individual with an autism spectrum disorder who exhibits precocious word-reading skills. As these individuals develop, their comprehension skills almost invariably begin to even out with their decoding skills because, once mastered, word decoding does not get harder. Despite this operational characterization, the field does not have a single cohesive model for why hyperlexia emerges.

characterization, the field does not have a single cohesive model for why hyperlexia emerges. Prior hyperlexia research has focused on characterizing comprehension deficits in these individuals, concluding that, although advanced, their word-decoding skills are no different from those of typically developing readers (Aram 1997) or that these skills simply represent preserved “cognitive mod-ules” specialized for processing words (O’Conner and Hermelin 1994).

Epidemiology There are very few papers that attempt to characterize the prevalence of hyperlexia. The most recent and thorough estimate comes from a sample of 80 children with developmental delays (Grigorenko et al. 2002). The paper employed a discrepancy criterion wherein children were categorized as hyperlexic if their reading-decoding scores were two or more standard deviations higher than their IQ scores. Using these criteria, 12 of the 80 children were characterized as hyperlexic.

than their IQ scores. Using these criteria, 12 of the 80 children were characterized as hyperlexic. However, as this is only one study with a relatively small sample, further research is required to determine if these results are comparable across different age ranges and populations.

Natural History, Prognostic Factors, and Outcomes The term “hyperlexia” was first used in the late 1960s by Silberberg and Silberberg (Sliberberg 1967) to describe children in the classroom who were able to read printed words but failed to adequately comprehend text. This description distinguished between word decoding, the ability to decode a printed word to speech, and reading comprehension, the ability to garner meaning from printed text. It is important to note both features of this

the ability to garner meaning from printed text. It is important to note both features of this description: (1) Hyperlexia was not characterized as a strength; these children were identified because of their reading compre-hension difficulties. (2) The reading difficulties these children exhibited were not associated with decoding the printed word. As the subsequent 40 years of research showed, many children who struggle with reading do so at the word-decoding level, and these difficulties can, and

children who struggle with reading do so at the word-decoding level, and these difficulties can, and often do, lead to difficulties in reading comprehension, but what was described in the hyperlexia literature was a reading difficulty at the level of comprehension in the presence of otherwise skilled decoding.

Subsequent hyperlexia research, primarily driven by small samples and case studies, described a heterogeneous group of children. Typically, these children have autism spectrum disorders (ASDs), are early readers, and exhibit difficulty with reading comprehension. Characterizations in the literature broadly range from individuals with ASDs who would otherwise not be expected to read due to age, or severe language or cognitive disability, and individuals with ASDs who exhibit a disparity between

severe language or cognitive disability, and individuals with ASDs who exhibit a disparity between their ability to decode and comprehend text but would otherwise be expected to be able to learn to read (Graziani et al. 1983; Nation 1999; Sliberberg 1967). Importantly, the published literature is composed of primarily case reports and small samples from fewer than 100 papers in the last four decades; thus, it is difficult to make strong conclusions regarding the characterization of these

decades; thus, it is difficult to make strong conclusions regarding the characterization of these individuals.

Successful reading relies on the development of spoken language. Because many individuals with ASD exhibit language delays or dysfunction, it would be expected that they would show similar difficulties with reading, and many do. However, some individuals with ASD and hyperlexia suc-cessfully read words despite profound language impairments. Printed words are symbols that rep-resent the sounds of spoken words. Thus, reading develops upon the scaffold of spoken language. This dependence on spoken

words. Thus, reading develops upon the scaffold of spoken language. This dependence on spoken language highlights the inconsistency of precocious word decoding in children with ASDs, as language and communi-cative impairments are part of the diagnostic criteria of ASD. Furthermore, it is not the case that children without language delays exhibit hyperlexia; quite the contrary, there are children with profound language impairments who none-theless begin to read with no apparent instruction. It

with profound language impairments who none-theless begin to read with no apparent instruction. It is unknown what leads to the development of successful reading in the presence of language dysfunction in some individuals with ASD. Hyperlexia in individuals with language impair-ments is inconsistent with the developmental tra-jectory of typical reading, and further research is required to elucidate our understanding of the phenomenon. It has been proposed that hyperlexia is the result of a

our understanding of the phenomenon. It has been proposed that hyperlexia is the result of a circumscribed interest in letters and words. This explanation is in line with the clinical presentation of circumscribed interests in ASDs and the obsession with words and letters that some individuals with hyperlexia exhibit. Nevertheless, successful word decoding requires mastery of the speech sounds of the language; this mastery requires attention to spoken language. Thus, theories of hyperlexia as

the language; this mastery requires attention to spoken language. Thus, theories of hyperlexia as the result of a circumscribed interest must reconcile the mastery of speech sounds, a very social domain, with the clinical expression of ASDs, where social infor-mation is often avoided or ignored.

Clinical Expression and Pathophysiology The clinical expression of hyperlexia is one of heterogeneity. However, many standardized mea-sures for reading have allowed insight into the reading mechanism of these children. First and foremost is that these individuals are decoding and not memorizing words. It had been hypothe-sized that these children have a savant-like mem-ory for words wherein they memorized entire words as pictures and then named them; however, research has shown this not to be

memorized entire words as pictures and then named them; however, research has shown this not to be the case. Several studies have shown that these individuals are able to successfully read pseudowords, for example, pronounceable but novel words like “loink” or “ugcrity” (Cardoso-Martins and Da Silva 2008; Newman et al. 2007). Furthermore, tests of mem-ory do not show these individuals to perform better than their typically developing peers. Secondly, while these individuals do exhibit

perform better than their typically developing peers. Secondly, while these individuals do exhibit compre-hension difficulties, these difficulties are in line with what would be predicted by their IQ and oral language skills; thus, it is not that their reading comprehension performance is unexpectedly low, but rather, their word-decoding skills are unex-pectedly high (Nation 1999; Nation et al. 2006; Nation and Norbury 2005; Pennington et al. 1987). Importantly, as these individuals get older,

Nation and Norbury 2005; Pennington et al. 1987). Importantly, as these individuals get older, their age adjusted word-decoding standard scores will get lower and lower. This does not reflect a regression; instead, it reflects that word-decoding skills reach a ceiling of difficulty. As individuals get older, their peers are attaining mastery in word decoding.

For both the caretaker and clinician, it is impor-tant to appreciate just how scant the hyperlexia literature is, lest they be guided by out of date, underpowered, and unreplicated research. While the quality of research in hyperlexia is high, it is based on a very small group of children. Since the term was coined in 1967, there are fewer than 100 peer-reviewed articles focusing on hyper-lexia. Of these articles, there are multiple review papers, case studies, and instances where the same

Of these articles, there are multiple review papers, case studies, and instances where the same individual is included in the sample of multiple papers. The latter issue is understandable as chil-dren are often seen over multiple occasions by the same clinicians or recruited for multiple studies at the same institution. However, it highlights just how little research there is to base clinical practice on. Finally, there are several papers with provoc-ative titles, claiming that hyperlexia is a

on. Finally, there are several papers with provoc-ative titles, claiming that hyperlexia is a marker for positive outcomes in ASDs, or how to accu-rately define and diagnose hyperlexia, when there is very little data to base these claims on.

Evaluation and Differential Diagnosis Again, as there is no formal diagnosis of hyper-lexia, there is no standardized assessment proce-dure. However, it can be very useful to have a clear characterization of reading skills in children and individuals in academic settings, especially if they are having reading difficulties. In addition to a clinical characterization for autism spectrum disor-ders including both cognitive and language abili-ties, a comprehensive assessment of written language

including both cognitive and language abili-ties, a comprehensive assessment of written language proficiency is warranted. This assessment would include, depending on the age and function-ing of the individual, measures of reading decoding, single-word reading, reading comprehension, reading fluency, phonological pro-cessing, and concepts of print. The expected profile from this assessment for an individual with hyper-lexia would be one of very strong single-word-decoding skills contrasted by

individual with hyper-lexia would be one of very strong single-word-decoding skills contrasted by relatively poor read-ing comprehension skills. Given that individuals with ASDs exhibit a range of communicative and cognitive abilities, it is important that the assess-ments used during evaluation are chosen to provide an accurate estimate of skill; the particular assess-ments will vary based on the participant’s age and cognitive ability, as well as their native language.

Treatment Treatment recommendations for reading compre-hension difficulties in individuals with hyperlexia combine best practices in reading comprehension interventions, for example, oral language training (Clarke et al. 2010; Snowling and Hulme 2011), and awareness of the specific needs of individuals with ASDs, for example, difficulty with inference, figurative language, and executive functioning. Spe-cifically, direct instruction in reading comprehen-sion strategies includes those used before,

Spe-cifically, direct instruction in reading comprehen-sion strategies includes those used before, during, and after reading a text, including activating back-ground knowledge, previewing vocabulary and content, comprehension monitoring (with embed-ded stimulus cues), and reviewing text. The use of graphic organizers matched to text types, for exam-ple, Venn diagram for cause and effect, is often important for organizing information and providing a visual support for language-based tasks.

often important for organizing information and providing a visual support for language-based tasks. Finally, for many students with ASDs, a focus on the devel-opment of nonfiction reading comprehension and written expression will be important, as these are the text types that will constitute the majority of their academic classes moving forward.

Hyperresponsiveness Winifred Schultz-Krohn Department of Occupational Therapy, San José State University, San José, CA, USA  Synonyms Overresponsiveness  Definition This term, used in the context of sensory pro-cessing, refers to the exaggerated responses dem-onstrated by a person following a sensory experience. The term overresponsiveness is also used in the literature. The nervous system is designed to receive and register incoming sensory information in a graded manner where stronger

is designed to receive and register incoming sensory information in a graded manner where stronger sensory information is registered at a more intense level. Individuals exhibiting hyperresponsiveness or overresponsiveness demonstrate a heightened state of arousal when seemingly non-noxious or subtle sensory stimuli are presented. An individ-ual may be hyperresponsive to only one form of sensory information such as auditory or tactile or an individual may be hyperresponsive to several types of

information such as auditory or tactile or an individual may be hyperresponsive to several types of sensory experiences. An individual with hyperresponsiveness may actively avoid situa-tions that include a specific form of sensory stim-ulus such as avoiding noisy rooms or an individual may demonstrate unusual behaviors when encountering overwhelming sensory expe-riences such as grimacing, crying, or becoming agitated as the sensory experience becomes increasingly intense. The hallmark of

or becoming agitated as the sensory experience becomes increasingly intense. The hallmark of hyper-responsiveness is an overreaction to a seemingly subtle or non-noxious sensory experience. Occupational therapy intervention addresses this hyperresponsiveness from several perspectives to allow the individual more opportunities to engage in everyday activities.

Hyperserotonemia Carolyn A. Doyle1 and Christopher J. McDougle2,3 1Indiana University School of Medicine, Indianapolis, IN, USA 2Lurie Center for Autism, Massachusetts General Hospital, Lexington, MA, USA 3Nancy Lurie Marks Professorship in the Field of Autism, Harvard Medical School, Boston, MA, USA  Definition Serotonin [5-hydroxytryptamine (5-HT)] is a neu-rotransmitter with effects in the central nervous system and some peripheral organs. It plays a key role as a growth factor in the

central nervous system and some peripheral organs. It plays a key role as a growth factor in the immature mamma-lian brain, directing proliferation and maturation (Whitaker-Azmitia 1993). As a result, serotonin has long been implicated in the pathophysiology of autistic disorder (autism), with the first report of elevated whole-blood serotonin (WBS) levels in patients with autism published in 1961 by Schain and Freedman. WBS levels have been a consistent finding in individuals with autism in a

by Schain and Freedman. WBS levels have been a consistent finding in individuals with autism in a number of research studies, although it is unclear what role serotonin exactly plays, if any, in the pathophys-iology of autism (McDougle et al. 2003).

The degree of elevated serotonin, referred to as “hyperserotonemia,” has been defined using var-ious cutoffs. One 1987 paper by Anderson et al. compared the WBS levels of 40 children with autism to that of 87 normal children. The 95th percentile of WBS in the normal group was used to define “hyperserotonemia” (WBS greater than 200 ng/ml), and 38% of autistic individuals were found to be hyperserotonemic. The causal reason for this increase is unknown as these subjects did not appear to represent

The causal reason for this increase is unknown as these subjects did not appear to represent any identifiable subgroup. Other studies have attempted to study WBS or platelet 5-HT levels in children with autism with regard to age, pubertal development, ethnicity, cognitive impairment, or familial WBS or platelet 5-HT levels, with mixed results (McBride et al. 1998; Croonenberghs et al. 2000; Leboyer et al. 1999; Piven et al. 1991). Overall, many but not all investigations have found elevated WBS

et al. 1999; Piven et al. 1991). Overall, many but not all investigations have found elevated WBS levels in prepubertal autistic subjects compared to controls, whereas most normal subjects show an age-related decline of WBS (McDougle et al. 2003).

Studies that attempt to probe 5-HT function via endocrine challenges in patients with autism have suggested that 5-HT responsivity may be reduced in autistic subjects compared to controls, particu-larly in adults. These findings have led researchers to propose that an abnormal maturational process in the 5-HT system may contribute to the patho-physiology of autism. Studies of urinary excretion of 5-HIAA, whole-blood tryptophan concentra-tions, and baseline levels of cerebrospinal fluid (CSF)

of 5-HIAA, whole-blood tryptophan concentra-tions, and baseline levels of cerebrospinal fluid (CSF) 5-HIAA have not found significant differ-ences between autistic subjects and controls. Genetic studies of the 5-HT system in autism have also yielded inconsistent results. It is unclear if WBS levels will prove to be a useful measure in the search for genetic susceptibility to autism, but the concept of elevated WBS as a recurring phe-nomenon in autism continues to intrigue researchers.

Hypo-arousal Sandra Hodgetts Pediatrics, University of Alberta, Edmonton, AB, Canada  Synonyms Under-arousal  Definition Arousal refers to the physiological state of readi-ness or general state of excitation

These stakeholders would be community club coaches, parents, adolescents with ASD, and typically developing adolescents involved in the club. Ohrberg (2013) advises on the development of a handbook to facilitate an autism-aware culture in sport. Therefore the input from the stakeholders would potentially be compiled to produce a handbook to facilitate the participation of adolescents with ASD (i.e., identifying potential barriers to participation and sport-specific coaching content to aid

(i.e., identifying potential barriers to participation and sport-specific coaching content to aid understanding of ASD and the subsequent and necessary adaptions to coaching style and training program). This handbook would be introduced and piloted with local clubs and adjusted based on subsequent feedback. This handbook would then be introduced into the national coaching training course as an independent module. The handbook would be edited one further time based on national feedback before

independent module. The handbook would be edited one further time based on national feedback before being submitted to national sporting body. The proposed handbook would inform a sport-specific framework which encompasses the perspective of all relevant stakeholders, including the adolescent with ASD.

### Independent Living  Aurelie Welterlin Chapel Hill TEACCH Center, Carrboro, NC, USA  #### Definition  Independent living consists of participating in day-to-day life with full capacity to successfully choose courses of action and make decisions about where to live and how to participate in society without the oversight of another individual. Independent living requires having the skills necessary to manage life tasks including, but not limited to, household maintenance, time and money

necessary to manage life tasks including, but not limited to, household maintenance, time and money management, and self-care. Independent living is also a philosophical viewpoint within the disability culture that promotes self-determination in individuals with disabilities and equal rights to participate in and contribute to society (The National Council on Independent Living 2010).

### Index of Productive Syntax (IPSyn)  Maura Moyle and Steven Long Speech Pathology and Audiology, Marquette University, Milwaukee, WI, USA  #### Description  Index of Productive Syntax (IPSyn) is a method for evaluating and quantifying the grammatical complexity of young children’s spontaneous language samples. IPSyn is based upon the grammatical categories and developmental scheme of Assigning Structural Stage (Miller 1981). Individual utterances in a sample are scored for the occurrence of

Structural Stage (Miller 1981). Individual utterances in a sample are scored for the occurrence of 60 different syntactic forms categorized under four subscales: noun phrase, verb phrase, question/negation, and sentence structure forms. Although IPSyn was developed for use with mainstream English speakers, it has been found to be a valid measure for children who speak African American English (Oetting et al. 2010). IPSyn scores are calculated from children’s spontaneous language samples. After

et al. 2010). IPSyn scores are calculated from children’s spontaneous language samples. After a sample is elicited and recorded, a corpus is formed by transcribing 100 successive, intelligible utterances, excluding imitations, self-repetitions, and routines (stereotyped language that does not represent productive language use). Following guidelines stated in the IPSyn coding manual (Scarborough 1990), the transcript is then scored for 60 syntactic forms belonging to phrases and sentences that

1990), the transcript is then scored for 60 syntactic forms belonging to phrases and sentences that are categorized under four subscales. The first two different occurrences of each form are credited. No additional credit is given for further occurrences in the sample. Certain early-developing structures are automatically credited if there is evidence in the transcript that the child has mastered later-developing structures in the same category. For example, if a child produces a question

later-developing structures in the same category. For example, if a child produces a question containing a wh-pronoun and verb (Q4), he also receives credit for intonationally marked question (Q1) and routine do/go or existence/name question (Q2). The points earned for each subscale are summed across all utterances, then added together to yield the total IPSyn score. No examiner qualifications are explicitly stated for this measure; however, the user must be familiar with English grammatical

are explicitly stated for this measure; however, the user must be familiar with English grammatical structures.

#### Historical Background  IPSyn was developed to provide a time-efficient means for measuring the grammatical complexity of children’s utterances from the beginning of oral language through the period of early literacy. Other measures of grammatical complexity, such as Mean Length of Utterance (MLU, Brown 1973; Miller 1981) and Developmental Sentence Scoring (DSS, Lee 1974) had been and continue to be used for that purpose, but these other measures were criticized for their lack of scope and

to be used for that purpose, but these other measures were criticized for their lack of scope and insensitivity to many important developmental language changes (Klee and Fitzgerald 1985; Klee and Sahlie 1986; Scarborough et al. 1991). IPSyn derived its grammatical categories and developmental scheme from Assigning Structural Stage (ASS, Miller 1981), a procedure generally hailed for its comprehensiveness. Furthermore, in contrast to measures such as MLU and DSS, IPSyn does not score every

Furthermore, in contrast to measures such as MLU and DSS, IPSyn does not score every structure of every utterance within a corpus. Instead, it scans for a maximum of two structural types within each of its 60 syntactic forms. This approach results in an analysis that is adequately comprehensive yet not so time consuming as methods that evaluate all the structural forms produced by a child. IPSyn has been used in research on typical language development and disordered language development,

has been used in research on typical language development and disordered language development, including autism (e.g., Tager-Flusberg and Calkins 1990; Tager-Flusberg et al. 1990). It is especially valuable to researchers using designs that require subject matching by language age (Scarborough et al. 1991).

#### Psychometric Data  No psychometric data are provided. IPSyn is not norm referenced.  #### Clinical Uses  As a clinical resource, IPSyn can be used to quantify and document linguistic changes that occur over time in successive language samples. A small database (n ¼ 15) exists of typically developing children who were sampled at 24, 30, 36, 42, and 48 months (Scarborough 1990). Although these numbers fall short of what is needed for standardization, the available data show how IPSyn could

numbers fall short of what is needed for standardization, the available data show how IPSyn could be used for peer comparisons, if and when a larger standardization sample is gathered. Two computerized versions of IPSyn have been developed. In the version contained in Computerized Profiling (Long et al. 2006), the program performs an automatic analysis that must then be reviewed and edited by the user. Another version, designed to work with CHAT transcripts in the CHILDES system, is completely

user. Another version, designed to work with CHAT transcripts in the CHILDES system, is completely automatic (Sagae et al. 2005).

### India and Autism  Savita Malhotra1 and Ruchita Shah2 1Fortis Hospital, Mohali, Punjab, India 2Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India

#### Historical Background  In India, the history of autism dates back to 1960s and is marked by initial sporadic efforts at clinical descriptions and research followed by a more sustained progress in clinical services, research, and policies. The first case report of autism appeared in an Indian journal in 1962 (Bassa 1962). There were a few publications in the 1960s and 1970s referring to infantile autism, with a steady flow after the 1990s. Before the 1980s, awareness of the disorder, both

autism, with a steady flow after the 1990s. Before the 1980s, awareness of the disorder, both among professionals and the general public was low, that increased gradually (Daley 2004). In the next two decades, i.e., from late 1980s to early 2000s, there were major developments in the field, in terms of services, legislation, policy, and capacity building. Nongovernment organizations and parent led organizations primarily for advocacy for children and adults with autism and their families were

organizations primarily for advocacy for children and adults with autism and their families were established (e.g., Tamanna, New Delhi; Action for Autism, New Delhi). Soon, these organizations forayed into spreading awareness, providing special educational services, resource building through training of teachers, and later quality research (Barua and Daley; Daley 2004). Alongside, two major developments occurred, the enactment of the National Trust for the Welfare of Persons with Autism,

developments occurred, the enactment of the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 (NTA, 1999). This Act was formulated to provide for the constitution of a trust at the national level for the welfare of persons with autism along with other disorders and disabilities. The NTA was the first time autism was recognized as a distinct condition by legislators and policy makers. This opened the doors for

was recognized as a distinct condition by legislators and policy makers. This opened the doors for government-driven and government-funded initiatives for the welfare of children and adults with autism in India. In early 2000s, the Rehabilitation Council of India (RCI), an autonomous body under the Union Ministry started a 2-year Diploma in Special Education (for autism spectrum disorders) course in four centers. The DSE (ASD) course designed in 2003 was the first of its kind to develop human

in four centers. The DSE (ASD) course designed in 2003 was the first of its kind to develop human resource in the field of ASD in India (RCI 2014).

The Central Board of Secondary Education (CBSE), an autonomous body under the Union Ministry of Human Resource Development, in 2009, introduced suitable modifications and concessions in the examination system to meet the special needs of students with disabilities such as extra time for completion of examination paper, facility of scribe, and exemption from second and third language courses with choice of study subjects (CBSE, year not mentioned). The Right to Education (RTE) Act, 2009 and

choice of study subjects (CBSE, year not mentioned). The Right to Education (RTE) Act, 2009 and Sarva Shiksha Abhiyan (literal translation – Campaign for Education for All), the Government of India’s flagship program for achievement of universalization of education, have a mandate for inclusive education for all children with disabilities including autism and intellectual disability (SSA, GOI). Parallel to this, the Rights of Persons with Disabilities Act (2016) that repeals the Persons with

Parallel to this, the Rights of Persons with Disabilities Act (2016) that repeals the Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act, (PDA) (1995) has included autism as one of the disabilities. The new Act provides a mandate for inclusive education, teachers’ training, vocational training, and rehabilitation. Inclusive Education for the Disabled at Secondary Stage (IEDSS) was launched in April 2009, where assistance for the inclusive education

at Secondary Stage (IEDSS) was launched in April 2009, where assistance for the inclusive education of children with disabilities including autism, as well as funds for identification and assessment, assistive devices, allowance for transport, escorts, readers, uniforms, books, and stationery have been provided. Another important development has been the recognition of child and adolescent psychiatry as an academic discipline. The Medical Council of India has made it mandatory for all the

as an academic discipline. The Medical Council of India has made it mandatory for all the departments and institutes of psychiatry imparting post graduate degree (MD) in Psychiatry to have child and adolescent psychiatry services. There have been sustained efforts for providing specialized training in Child and Adolescent Psychiatry (CAP) to psychiatry postgraduates. A postdoctoral fellowship in Child and Adolescent Psychiatry was started in Vellore, Tamil Nadu, and National Institute of Mental

and Adolescent Psychiatry was started in Vellore, Tamil Nadu, and National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, followed by starting of a 3-year DM course in CAP in NIMHANS and Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh. The Medical council of India recognizes DM course in Child and Adolescent Psychiatry and has framed the curricular requirements and examination pattern in India. Also, a fellowship program in Developmental

requirements and examination pattern in India. Also, a fellowship program in Developmental Pediatrics and a DM course in Pediatric Neurology have been started at PGIMER, Chandigarh.

#### Legal Issues, Mandates for Service  The National Trust (NT) established under the NTA, 1999 is an autonomous organization that aims to enable and empower persons with disability (including autism) to live independently and within or as close to the community to which they belong through its various agencies and schemes. The latter include scholarships, training, employment assistance, and health insurance among others. The Trust promotes measures for the care and protection of persons

health insurance among others. The Trust promotes measures for the care and protection of persons with disability by appointment of guardians and trustees, facilitates realization of equal opportunities, protection of rights, and full participation of these individuals and thus shares some aims with that of PDA, 1995. It also extends support to registered non-governmental organizations to provide need-based services (National Trust, year not mentioned). However, the main aim of the NT remains

need-based services (National Trust, year not mentioned). However, the main aim of the NT remains to answer the worry of parents, “What will happen to my child when I am no more?” The provisions of the Rights of Persons with Disabilities Act (2016) aim to protect the rights of these individuals as envisaged in the United Nations Convention on the Rights of Persons with Disabilities (2006), lay down specific measures to promote and facilitate inclusive education, vocational training and

lay down specific measures to promote and facilitate inclusive education, vocational training and employment, social security, health care, insurance schemes, and rehabilitation. Chapter 3 of the Act specifically deals with education of these individuals, such as mandate for establishing adequate number of teacher training institutions, training and employing teachers who are trained in teaching children with disabilities, training of professionals and staff to support inclusive education and

children with disabilities, training of professionals and staff to support inclusive education and making necessary changes in the curriculum and examination system (Rights of Persons with Disabilities Act, 2016). Sharing the spirit of the previous two Acts, the RTE Act (2009) addresses the important right, i.e., right to full time elementary education of satisfactory and equitable quality in a formal school which satisfies certain essential norms and standards. As mentioned earlier, inclusive

school which satisfies certain essential norms and standards. As mentioned earlier, inclusive education for children with autism is one of the mandates. With the passage of the RTE Act, changes have been incorporated into the SSA approach, strategies, and norms. These children are recognized as those with special needs – CWSN. Schools are required to employ trained resource teachers for inclusive education of these children. The RCI Act and the RCI provide for the training curriculum and

education of these children. The RCI Act and the RCI provide for the training curriculum and program of these teachers.

#### Overview of Current Treatments and Centers  Professionals involved in care are psychiatrists, psychologists, pediatricians, speech therapists, and occupational therapists, who work either individually or in liaison with each other. Treatment and care is provided by both medical institutions and nongovernmental social organizations. In the government sector, most of the cases are seen in the departments of psychiatry and pediatrics of general hospitals and apex teaching institutes like

the departments of psychiatry and pediatrics of general hospitals and apex teaching institutes like Postgraduate Institute of Medical Education and Research (PGIMER), All India Institute of Medical Sciences (AIIMS), and National Institute of Mental Health and Neurosciences (NIMHANS), etc. Only a few of these departments (of psychiatry) run special child and adolescent clinics, while still fewer have dedicated child and adolescent psychiatric units. However, the number of departments

fewer have dedicated child and adolescent psychiatric units. However, the number of departments establishing such services is steadily increasing. Still, lack of trained manpower remains a serious handicap (Malhotra and Vikas 2005). Also, there is no specialized center for autism run by the government. Few private centers which provide specialist care are out of reach of common people (Malhotra and Vikas 2005). There are several treatment and educational centers run by NGOs or parent

and Vikas 2005). There are several treatment and educational centers run by NGOs or parent associations and societies. Some of these have made notable contributions such as promoting greater awareness among professionals, conducting teacher and parent training through courses, workshops, and live demonstrations. Action for Autism (AFA), Academy for Severe Handicaps and Autism (ASHA) are some of the important organizations. AFA practices “open-door teaching method” in which the techniques used

the important organizations. AFA practices “open-door teaching method” in which the techniques used around the world are tested and modified to the needs of Indian children. However, overall, there is a huge skew with most centers located in metropolitan cities (for example, Mumbai alone has 80 registered centers, while 2–4 centers each in other states) and almost all centers are in the state capitals (complete list available at: Autism Information and Resource Centre, an initiative of the

capitals (complete list available at: Autism Information and Resource Centre, an initiative of the National Trust, http://www.autismresourcecenter.in/Default.aspx). Majority of the treatment protocols involve parents and are aimed at training the parents. Principles are largely drawn from TEACCH approach and Applied Behavioral Analysis (Malhotra et al. 2002, 2010). The strategies include behavioral techniques aimed at enhancing eye to eye contact, reduction of maladaptive behavior, structuring

techniques aimed at enhancing eye to eye contact, reduction of maladaptive behavior, structuring time, activities and physical environment (Malhotra et al. 2002), sensory integration, speech therapy, and picture exchange communication systems (Malhotra et al. 2010). Parent counseling and emotional support to parents have also been integral to treatment (Malhotra et al. 2002). There have been few other therapeutic interventions, e.g., ComDEALL (Karanth et al. 2010), Makaton language program,

other therapeutic interventions, e.g., ComDEALL (Karanth et al. 2010), Makaton language program, used at select centers. Few centres for complementary and alternative forms of medicine such as homeopathy and Unani also offer treatment for autistic children. Also, many families, as high as 90% opt for or combine the use of complementary and alternative medicines (Krishnamurthy 2008).

#### Overview of Research Directions  As mentioned earlier, autism research can be dated back to 1960s and 1970s, though it progressed sluggishly before the 2000s. Malhotra and Vikas (2002), Malhotra (2006) and Vijay Sagar KJ (2011) have well-reviewed the research in autism in India in the preceding years. Since late 1980s, several descriptions and observational studies (such as Srinath et al. 1989, Kar et al. 1993, Jaydeokar et al. 1997, Malhotra et al. 2003) appeared from tertiary

et al. 1989, Kar et al. 1993, Jaydeokar et al. 1997, Malhotra et al. 2003) appeared from tertiary psychiatric centers across the country in reputed national and international journals. Research in epidemiology of ASD is sparse (Malhotra and Kate 2015) and a cohesive picture of the prevalence and incidence of autism spectrum disorder is missing in India (Naik 2015). Relation between social maturity and problem behaviors in children with comorbid intellectual disability have been explored (Ganaie

and problem behaviors in children with comorbid intellectual disability have been explored (Ganaie et al. 2015). Freeth et al. 2013 conducted a cross-cultural study on autistic traits in India, UK, and Malaysia. Apart from epidemiological surveys, research areas include descriptions and observational studies, interventional studies, genetic and neurobiological research, health systems research, some culturally oriented research on pathways to care, professionals and parent

systems research, some culturally oriented research on pathways to care, professionals and parent experiences/orientation, and psychometric validation of autism scales, development of Indian scales (such as Indian Scale for assessment of autism, NIMH, India), reviewed extensively in two publications (Naik 2015; Malhotra and Kate 2015).

For example, there are studies dealing with intervention programs (e.g., parent training programs, PECS, ComDEALL) (Malhotra et al. 2002, 2010; Karanth et al. 2010). Neurobiological studies have included assessment of CSF biochemistry (Narayan et al. 1993) and urinary metabolites (Damodaran and Arumugam 2011), serum levels of transcription factor nuclear factor-kappa B (Naik et al. 2011), chemical analysis of nail and hair (Priya and Geetha 2011) and BERA (Shivashankar and Satishchandra 1989).

analysis of nail and hair (Priya and Geetha 2011) and BERA (Shivashankar and Satishchandra 1989). Cerebral perfusion and metabolism has been studied using PET (Anil Kumar 2012) and SPECT (Gupta and B.V. Ratnam BV. 2009). Both the studies used age-matched controls, while the former study (Anil Kumar 2012) also evaluated its association to behavior and cognitive functioning. Also, there have been efforts focusing on genetics of autism, such as studying Engrailed-2 gene (Manjunatha et al. 1989),

efforts focusing on genetics of autism, such as studying Engrailed-2 gene (Manjunatha et al. 1989), serotonin transporter promoter variants (Guhathakurta et al. 2006), and folate metabolic pathway in Indian patients (Mohammad et al. 2009) and relation to fragile X (Sen et al. 2010; Balasubramanian et al. 2009; Suvrathan and Chattarji 2011). Socio-cultural issues including parental experiences and perspectives, met and unmet needs of families, parental stress, coping, and parenting styles (Desai

perspectives, met and unmet needs of families, parental stress, coping, and parenting styles (Desai et al. 2012; Divan et al. 2012; Tripathi 2015; Minhas et al. 2015) have been explored. Daley et al. (2014) have attempted to explore routines of adults with autism using a mixed methods approach. Besides these studies, work has been done in the areas of psychometric validation of autism scales and lately, development of indigenous scales. Recently, Indian Scale for Assessment of Autism (ISAA) has

development of indigenous scales. Recently, Indian Scale for Assessment of Autism (ISAA) has been developed as a measure of symptom severity, and there have been several studies reporting on its reliability and validity (Chakraborty et al. 2015; Mukherjee et al. 2015; Patra and Arun 2011). The ISAA has been recommended for purposes of disability certification as per the guidelines of the Government of India (GOI Notification dated 25th April, 2016). The International Clinical Epidemiology

of India (GOI Notification dated 25th April, 2016). The International Clinical Epidemiology Network (INCLEN) Trust group has developed the INCLEN Diagnostic Tool for Autism Spectrum Disorder (INDT-ASD), and it has been found to have good diagnostic accuracy (Juneja et al. 2014). The tool has been recommended for use in conjunction with the ISAA (GOI Notification dated 25th April, 2016), though larger field trials are needed for ascertaining the psychometric properties and diagnostic stability

field trials are needed for ascertaining the psychometric properties and diagnostic stability of the tool (Wong and Singhal 2014).

There have been a few interventional studies. Malhotra et al. (2002) offered a parent intervention package including behavioral, supportive, and educational techniques, delivered in 3–6 sessions of 45–60 min each and found that on the whole parents found this brief contact helpful. Malhotra et al. (2010) studied effects of picture exchange communication system on communication and behavioral anomalies in autism and found improvement in the target behaviors. Karanth et al. (2010) studied the

in autism and found improvement in the target behaviors. Karanth et al. (2010) studied the efficacy of an indigenous early intervention program for children with autism spectrum disorders that specifically targets developmental issues in the areas of motor, communication, cognitive, social, and emotional skills in a small sample of 30 children. A small cross-sectional study that used an autism treatment evaluation checklist pointed towards the need for training in order to improve the

autism treatment evaluation checklist pointed towards the need for training in order to improve the communication and social interaction in children with autism (Ghosh et al. 2015). Divan et al. (2015) developed the parent-mediated intervention for Autism Spectrum Disorder in South Asia (PASS) intervention, which is a cultural adaptation of the Preschool Autism Communication Therapy (PACT) program. Harshini and Preeti (2017) have proposed an interventional model deliverable at primary care in

Harshini and Preeti (2017) have proposed an interventional model deliverable at primary care in nonspecialist setting that focuses on parental training at the center focusing on joint attention, imitation, adaptive and social engagement skills and encouraging parents to engage the child in home-based training. Overall, in resource-limited settings such as those in India, it is intuitive to consider parents as the instrument for therapeutic intervention. However, robust studies are needed to

parents as the instrument for therapeutic intervention. However, robust studies are needed to establish the efficacy of indigenously developed or culturally adapted intervention programs before these can be recommended on a larger scale.

In 2010–2011, the Indian Council of medical Research (ICMR) announced plans to conduct extensive and in-depth research in the area of ASDs. Since then, several projects addressing early diagnosis and prevalence studies, evolution of diagnostic thresholds criteria for Indian population, standardization of multidisciplinary assessment, functional imaging studies, correlational studies with neuro-psychiatric morbidities, standardization of therapeutics, genetic studies (e.g., REELIN gene, MeCP2,

morbidities, standardization of therapeutics, genetic studies (e.g., REELIN gene, MeCP2, β-amyloid precursor protein), biochemical markers, intervention studies and services for care, development of training modules for parents & children, development of modules of care at schools and home, special education and remediation, and speech therapy and sensory integration studies have either been launched or are in the pipeline. ICMR has also initiated collaborative projects with Autism Speaks

launched or are in the pipeline. ICMR has also initiated collaborative projects with Autism Speaks (http://www.icmr.nic.in/). The development of INCLEN tools and PASS intervention has been the result of such international collaborations. The NIMH, Secunderabad, have started work on a project studying effectiveness of sensory integration therapy on sensory processing and adaptive behavior (NIMH; http://www.nimhindia.org/R&D%20ongoing%20projects%2012-13.pdf). NIMHANS Bangalore is working towards

NIMHANS Bangalore is working towards developing a hospital-based Autism Registry.

#### Policy and Training  As mentioned earlier, the RCI started Diploma in Special Education (ASD) in four centers; the government run premier institute, National Institute for Mentally Handicapped (NIMH), Secunderabad, India, being one among these. Since then, the course curriculum has been revised every 5 years, the latest revision being in 2014 (RCI, 2014). This 2-year course is now conducted in over 20 institutes recognized by the RCI. The trained teachers can work in regular schools as

in over 20 institutes recognized by the RCI. The trained teachers can work in regular schools as resource teachers, in special educational settings, and in clinics and hospital-based departments. The RCI along with certain organizations such as Action for Autism conducts periodical workshops and seminars for awareness and training of teachers. Under the SSA program, there are detailed modules and curriculum for training of teachers in educational and behavioral methods for autism, intellectual

curriculum for training of teachers in educational and behavioral methods for autism, intellectual disability, and other disabilities (Sarva Shiksha Abhiyan website). Also, the postdoctoral fellowships and DM courses shall increase the specialized manpower required in this field in the near future. With the mandates of the existing and soon to be enacted Acts, deliberately designed policies for capacity building and research, and sustained efforts across various fields such as medical research,

building and research, and sustained efforts across various fields such as medical research, education and rehabilitation, and legal, the stage is set for the scenario of autism services and research to change dramatically for the good in India.

### Individual Education Plan  Erin E. Barton University of Colorado Denver, Denver, CO, USA  #### Definition  An Individualized Education Program (IEP) is provided to students with disabilities under the Individuals with Disabilities Education Improvement Act (IDEIA). Current law (IDEIA) dictates that all students who are eligible for educational supports and specialized services have an IEP. The IEP is a legal document outlining the necessary services and supports for children with

an IEP. The IEP is a legal document outlining the necessary services and supports for children with disabilities (i.e., who have an educational eligibility) ages 3 years through 22 years. IEPs are created in collaboration with parents, teachers, and therapists working with the student. The purpose of the IEP is to outline educational goals, supports, services, and placement for individual students with disabilities and identify who is responsible for carrying out the student’s program. An IEP

with disabilities and identify who is responsible for carrying out the student’s program. An IEP serves as the framework for individualized instructional programs for students with disabilities. The IEP addresses all of a student’s educational needs. It is a written program of educational services and supports developed for each student eligible for services in accordance with the criteria outlined by each state’s board of education. The IEP includes procedural safeguards for parents of

outlined by each state’s board of education. The IEP includes procedural safeguards for parents of students with disabilities. The procedural safeguards outline the rights of students and parents. Parents are given a copy of their procedural safeguards at each IEP meeting. The procedural safeguards are determined by each state board of education. These include (but are not limited to) free and appropriate public education for all children age 3 and older, prior written notices for all meetings

public education for all children age 3 and older, prior written notices for all meetings and decisions, a description of instructional and placement options, and descriptions of all evaluation procedures. An IEP is required for all students older than 3 years who need specialized services. In most states, children younger than 3 who have an Individual Family Service Plan (IFSP) will transition to an IEP at age three. In some states, this transition occurs at age 5 or once the child enters

to an IEP at age three. In some states, this transition occurs at age 5 or once the child enters kindergarten. The transition from an IFSP to an IEP always involves a reevaluation (i.e., parent and team input, informal assessments and observations, and standardized assessments). The eligibility determinations are made by the state-appointed evaluation teams based on the extent to which the disability impacts the students’ educational performance.

#### Historical Background  IEPs are mandated by federal law, specifically the Individuals with Disabilities Act, which was recently amended in 2004. The major purpose of this law is to ensure all children with disabilities to have access to free and appropriate education (FAPE). The IEP outlines the services and supports needed to ensure the child receives FAPE.

#### Current Knowledge  ##### IEP Process  For students 3 years and older, the initial IEP process begins with an evaluation of the child’s present level of development. An eligibility determination is made based on the assessment information gathered. This includes information gathered through parent interviews, informal classroom observations or assessments, and formal or standardized assessments. The state identified evaluation team determines eligibility for services based on the extent to

The state identified evaluation team determines eligibility for services based on the extent to which child’s disability negatively affects educational performance. For example, the evaluation team might determine a child’s autism is negatively affecting his ability to communicate, interact with others, access the general education curriculum, access materials in the classroom, and meet grade level expectations. The team might determine this child meets the eligibility requirements and needs

expectations. The team might determine this child meets the eligibility requirements and needs specialized services. However, not all children with a medical diagnosis of autism will be eligible for educational services. For example, the evaluation team might determine a child with higher functioning autism (i.e., has above average IQ) can access the general education curriculum, materials, and have positive interactions with peers and adults with the typical classroom-wide structure and

and have positive interactions with peers and adults with the typical classroom-wide structure and supports. Once the child is determined to be eligible for specialized services and an IEP is developed, the child’s eligibility is reevaluated every 3 years. The student’s IEP is revised each year at an annual review.

##### IEP Components  There are several components to an IEP (e.g., the educational team, eligibility category, placement, accommodations, strengths, goals, and services). These will be described in more detail. The student’s educational team is made up of a variety of individuals who collaborate to develop an educational program that will meet the student’s needs. The IEP team for students with autism should include the parents, general education teacher, special education teacher, and school

autism should include the parents, general education teacher, special education teacher, and school district representative (e.g., the case manager, guidance counselor, administrator, or professional at the district level). Depending on the needs of the student, the IEP team also might include an autism specialist, speech/language therapist, occupational therapist, school psychologist, behavior specialist, and the student when appropriate. The special education teacher is a key member of the

specialist, and the student when appropriate. The special education teacher is a key member of the IEP team for students with autism (Hall 2007). Thus, special education teachers serving students with autism must have specific experience and coursework related to evidence-based practices for students with autism. Occasionally, school districts will hire autism specialists (i.e., school personnel with specific experience and training in evidence-based practices with students with autism) to

with specific experience and training in evidence-based practices with students with autism) to support students with autism and help teachers in assessment, instructional planning and implementation, and progress monitoring of students with autism (Hall 2007). In sum, the purpose of the IEP team is to determine the extent of the student’s needs, design an instructional program, implement the program, evaluate the program, and ensure the student receives the appropriate supports and services.

evaluate the program, and ensure the student receives the appropriate supports and services. Thus, the role of the IEP does not begin and end at the IEP meeting – it is an ongoing effort. Effective communication among team members is essential to ensure the IEP is followed and the child is making appropriate progress toward goals and objectives.

The next major section of the IEP is the students’ educational needs. This section indicates the student’s eligibility category and specific information related to how the disability impacts the child’s educational performance. Eligibility categories might include autism, other health impaired, emotional delays, cognitive delays, specific language impairment, speech impairments, visual or hearing impaired, or learning disability. This section includes a statement with specific information

impaired, or learning disability. This section includes a statement with specific information related to how the student’s disability impacts his educational performance or academic achievement.

#### Current Assessment Information  This section includes a statement about the student’s present level of development, functioning, and educational performance, including information about what skills the student has mastered and what skills are developing. This section also should include information related to the child’s current academic and behavioral repertoire, learning style, interests, and the impact of the student’s disability on academic, social, adaptive, communication, or motor

and the impact of the student’s disability on academic, social, adaptive, communication, or motor skills. This can include information related to assessment results, discipline reports, grades, observational notes, and attendance information. The student’s academic and behavioral strengths also should be clearly delineated in this section. Parents and teachers should provide information about the student’s behavioral and academic strengths. This assessment information should be directly linked

student’s behavioral and academic strengths. This assessment information should be directly linked to instructional planning. The team will develop a list of areas of instructional priorities based on this assessment information. Successful instructional programs are directly linked to the student’s strengths, assessment results, interests, learning style, and parent priorities and concerns (Boutot and Myles 2011).

#### Educational Needs  The next section on the IEP delineates the student’s needs, instructional priorities, and goals. The student’s needs are developed based on the assessment results, levels or area of impact of the disability, or academic performance. Annual goals and short-term objectives should be written for each area in which the student has needs. The areas of need for students with autism should include communication, social skills, and affected academic areas (e.g., reading, math).

should include communication, social skills, and affected academic areas (e.g., reading, math). Many students with autism will need goals in fine motor, gross motor, or adaptive skills (e.g., independent functioning). The student’s needs should be directly linked to the student’s goals. Goals are the skills that the student will attain within the year or other specified amount of time. Goals should be functional, generative, measurable, and instructional. Functional goals are directly related

be functional, generative, measurable, and instructional. Functional goals are directly related to skills the student will need for independent performance within daily routines and activities. Generative goals are related to skills the child will need across settings, people, materials, and activities. Measurable goals are clearly operationalized so that the student’s progress can be clearly and efficiently monitored over time. Instructional refers to goals that will occasion opportunities for

efficiently monitored over time. Instructional refers to goals that will occasion opportunities for teaching throughout the student’s day. Goals also should be written in a positive manner with clear, professional language (e.g., instead of “Elisa will stop hitting peers,” the goal should read “Elisa will verbally ask a teacher for help”). Examples of annual goals for children with autism are: 1. For a preschooler: Sammy will appropriately respond (e.g., verbally or with gestures) to social

1. For a preschooler: Sammy will appropriately respond (e.g., verbally or with gestures) to social initiations from a peer during classroom routines and activities. We will know he can do this when he appropriately responds to 5 peer initiations per day for 3 consecutive days. 2. For an elementary school student: Juan will follow classroom rules and directives (e.g., sit in chair, raise hand to ask questions, walk in the halls, etc.) given visual and verbal prompts. We will know he can do this

questions, walk in the halls, etc.) given visual and verbal prompts. We will know he can do this when he follows 10 classrooms rules and directives for 2 days in a row. 3. For a high school student: Trevonte will ask questions of others regarding topics initiated by self or others to sustain conversation. We will know he can do this when he participates in five conversations per day for 3 consecutive days.

#### Accommodations or Modifications  This section delineates accommodations or modifications necessary to support the student’s learning. Accommodations are changes made to the instruction or assessment to support the student and provide access to the general education curriculum without altering the content. Accommodations for students with autism might include visuals or graphic organizers, specialized seating arrangement, visual rather than written responses, adapted keyboards, or having

specialized seating arrangement, visual rather than written responses, adapted keyboards, or having material read aloud. Accommodations do not change grade level or academic expectations. Modifications refer to changes made to the assessment or general education curriculum to meet the needs of the student. Accommodations are required by law to ensure students with disabilities have an equal opportunity to learn and access the general education curriculum. Modifications are made when the

opportunity to learn and access the general education curriculum. Modifications are made when the expectations are not appropriate for the student. Examples of modifications for students with autism might include the following: a student works on addition, while peers work on division; a student stacks or sorts materials, while peers work on a science experiment; or a student is given a test on continents, while peers are tested on geography or countries across the world. Modifications should

continents, while peers are tested on geography or countries across the world. Modifications should target the highest level possible to meet the student’s needs (i.e., closest to the general education content as possible) and only used when absolutely necessary.

#### Related Services  The next section of the IEP describes the services necessary to support the student and supplement the services provided in the classroom. Related services are required to ensure the student is successful in the classroom. Related services for students with autism might include speech/language therapy, occupational therapy, assistive technology, transportation, and counseling. This section will describe these services in detail. The related services section includes the

This section will describe these services in detail. The related services section includes the frequency of services (e.g., twice per week for 30 min), the location of these services (e.g., classroom, therapy room), the type of services (e.g., direct service to the individual child, group services with the child and other children with disabilities, or consultation to the teacher or parent), and the person providing these services. Indirect services (i.e., consultation and coaching) are often

the person providing these services. Indirect services (i.e., consultation and coaching) are often provided by autism specialist to students with autism in general or specialized classrooms. This might include consultation to the general education teacher about designing a predictable, visually rich environment to support the student with autism or the special education teacher about implementing an evidence-based strategy for teaching communication or social skills. These services should be

an evidence-based strategy for teaching communication or social skills. These services should be provided directly in the classroom when appropriate to support the student with autism in accessing the classroom curriculum and interacting with peers and materials.

#### Assistive Technology  The next section on the IEP is related to assistive technology for students with disabilities. This includes technologies used by the student to function within the classroom and community. For students with autism, this might include augmentative communication devices, computer software to enhance academic performance, or the use of personal digital assistants (PDAs) to promote independent transitioning and following schedules.

#### Setting  The IEP also will indicate the setting(s) in which the IEP will be implemented. This is referred to as the educational placement. Placement is not based on district availability or preferences. The IEP team will determine the student’s placement based on the student’s strengths and needs. Special education law requires that all students with disabilities be educated in the least restrictive environment and with their typical peers to the maximum extent possible. The law requires

environment and with their typical peers to the maximum extent possible. The law requires the general education classroom to be considered first, and if the student is not included in the general education, the IEP should document and specify reasons why. A continuum of placements must be considered from least restrictive (general education classrooms) to more restrictive (e.g., special classroom or school). The IEP team should consider general education classroom with embedded special

or school). The IEP team should consider general education classroom with embedded special education services, general education classroom with pull-out to a resource or special education classroom for part of the day, special education classroom within a general education school, or specialized school. In rare cases, service will be provided in an institution or hospital. Extensive research supports the inclusion of student with disabilities in the general education classrooms. For example,

the inclusion of student with disabilities in the general education classrooms. For example, inclusive classrooms provide a context for implementing evidence-based practices, occasional social interactions and communication among students with autism and their typical peers, which represent core skill deficits for children with autism, and research has documented more positive attitudes toward disabilities by peers when students with disabilities are included in the preschool environment

disabilities by peers when students with disabilities are included in the preschool environment (Dawson and Osterling 1997; Strain et al. 2002). If the placement is not a general education classroom, the IEP must specify the amount of time the child will participate in the general education classroom, document that opportunities for the student to interact with typically developing peers will be provided, and include a statement specifying that the least restrictive environment was considered.

#### Positive Behavior Supports  There also is a section on the IEP that requires the team to indicate if positive behavioral supports have been considered for the student with autism. This is an important service for many students with autism, particularly students who display stereotypic behaviors (e.g., repetitive hand flapping, body rocking), or challenging behaviors (e.g., which are often due to delays in functional communication and social skills) that might interfere with learning. This

to delays in functional communication and social skills) that might interfere with learning. This section will describe the supports (e.g., preventative strategies, replacement skills, and responses to challenging behaviors) and implementation plan.

#### Evaluation  The IEP also includes a section specifying how student progress will be measured and evaluated. Appropriately written goals and objectives will embed an evaluation process. However, this section ensures the student’s progress is intentionally and systematically monitored over year. Progress on each goal must be measured and documented.

#### Postsecondary Transition  The IEP for students with autism who are 14 years old must include a section for the student’s post-school plan or transition to adult care or services. The IEP team considers the student’s need for transition services and documents the discussion. When appropriate, the IEP will include a statement of the needs for services and a transition planning form. This form requires the IEP document the discussion about the student’s transition to adult life after school.

requires the IEP document the discussion about the student’s transition to adult life after school. The form will include a postsecondary vision (e.g., the student’s goals for adult life); disability-related needs; plan for supporting the student’s self-determination, academic, and adaptive skills to support post-secondary vision; and the roles of school personnel, family, student, and community providers in supporting the student.

#### 504 Plans  Students with disabilities who require accommodations must have a written plan. If the accommodations are considered reasonable, the student can have a 504 plan rather than a full IEP. The 504 plan also is developed by the student’s educational team, but requires only minimal accommodations to access and succeed within the general curriculum. For students with autism, this might include a digital timer, longer testing time, or regular breaks during the day.

#### Future Directions  ##### Summary and Future Directions  An Individualized Education Program (IEP) is the legal documentation of an educational plan developed with a team of professionals based on the strengths and needs of one child. IDEIA mandates that all children with special needs have a right to an IEP and free access to appropriate public education. Effective IEPs ensure that children with autism receive equitable education (the same as children without disabilities) in the least

with autism receive equitable education (the same as children without disabilities) in the least restrictive environment possible. Future research should examine components of effective IEPs and strategies for developing collaborative, effective IEPs.

### Individualized Family Service Plan  Erin E. Barton University of Colorado Denver, Denver, CO, USA  #### Definition  An Individualized Family Service Plan (IFSP) is a legal documentation of the early intervention process for children with disabilities younger than 3 and their families. The IFSP guides the early intervention process in accordance with Part C of the Individuals with Disabilities Act (IDEA). Part C of IDEA is a federal grant program that supports states in operating a

Act (IDEA). Part C of IDEA is a federal grant program that supports states in operating a comprehensive system of early intervention for children younger than 3 years old with or at risk for disabilities and their families. As with the IEP (Individual Education Program), the IFSP is completed by a team of professionals (including the child’s family and caregivers); the IFSP documents services necessary to support the family and build the family’s capacity to help their child grow and develop.

to support the family and build the family’s capacity to help their child grow and develop. An IFSP is required for all children younger than 3 years who are receiving Part C early intervention services. In most states, children younger than 3 who have an Individual Family Service Plan (IFSP) will transition to an IEP at age three. In some states, this transition occurs at age 5 or once the child enters kindergarten, in which case the children have an IFSP until they are 5 years old. The

child enters kindergarten, in which case the children have an IFSP until they are 5 years old. The transition from an IFSP to an IEP always involves a reevaluation (i.e., parent and team input, informal assessments and observations, and standardized assessments). IEP Versus IFSP IFSPs and IEPs are legal documents outlining the services needed for children with disabilities from birth to age 3 and from age 3 through 21, respectively. The IFSP and IEP are similar in that they are developed by a

from age 3 through 21, respectively. The IFSP and IEP are similar in that they are developed by a team for an individual child or student and include the goals, interventions, and supports necessary to support their learning. However, IFSPs are uniquely designed to revolve around the individual family’s concerns, priorities, and resources. IFSPs include child and family outcomes relating to supporting the child’s development, whereas IEPs are focused only on the student and his/her academic

the child’s development, whereas IEPs are focused only on the student and his/her academic performance. IFSPs identify the family’s natural setting and document how and when services will be provided in the family’s natural settings (i.e., home, parks, child care). Also, IFSPs have an additional section (as compared to IEPs) where the non-Part C services required by the family are listed along with the funding sources for those services. IEPs focus on the special education and related services

the funding sources for those services. IEPs focus on the special education and related services in schools. The final difference between IEPs and IFSPs lies within their purpose. In sum, the purpose of the IFSP is to identify and document the supports needed to strengthen the family’s capacity to promote their child’s development, whereas the IEP outlines the supports and services to be provided by professionals within schools to promote the student’s academic performance (McWilliam 2010;

by professionals within schools to promote the student’s academic performance (McWilliam 2010; McWilliam et al. 1998).

#### Historical Background  The Individual Family Service Plan (IFSP) is part of a system of federal and state special education laws. The federal law, the Individuals with Disabilities Education Act (IDEA), specifies the IFSP and defines the basic components that must be in an IFSP. Each state further defines the specific children and families eligible for Part C services and the IFSP components.

#### Current Knowledge  ##### IFSP Process  For children younger than 3, the initial IFSP process begins with an evaluation of the child’s present level of development. An eligibility determination is made based on the assessment information gathered. Eligibility determinations are state-determined. Thus, although all states and eligible territories currently provide Part C services, the children and families who are eligible for these services differs across states. A few states provide Part

and families who are eligible for these services differs across states. A few states provide Part C services to children younger than 3 who are at risk for delays and children who have delays. Eligibility determination is made based on information gathered through parent interviews (e.g., Routines Based Interview, McWilliam et al. 2009; Routines-based assessment, Woods and Lindeman 2008), informal observations or assessments in natural settings, and formal or standardized assessments. Once the

observations or assessments in natural settings, and formal or standardized assessments. Once the child is determined to be eligible for specialized services and an IFSP is developed, the child’s eligibility is reevaluated every year. The IFSP team reviews and evaluates child and family’s progress on IFSP outcomes at least every 6 months.

##### IFSP Components  There are several components to an IFSP (e.g., the team, current assessment information, family concerns, outcomes, etc.). These will be described in more detail. The child’s educational team is made up of a variety of individuals who collaborate to develop a plan to meet the child and family’s needs. The IFSP team for children with autism might include the parents, autism specialist, early interventionist, speech/language therapist, and service coordinator. Depending on

specialist, early interventionist, speech/language therapist, and service coordinator. Depending on the needs of the child and family, the IFSP team also might include a behavioral specialist, social worker, or psychologist. If the child spends more than 15 h per week in child care, the primary care provider from the child care setting should be included on the team (McWilliam 2010). The purpose of the IFSP team is to build a collaborative relationship with the family and determine the supports

the IFSP team is to build a collaborative relationship with the family and determine the supports necessary to build the family’s capacity to promote their child’s development. For children who spend more than 15 h per week in child care, this includes supporting the primary care providers in the child care setting. As with the IEP team, role of the IFSP team does not begin and end at the IFSP meeting – it is an ongoing effort. Effective communication among team members is essential to ensure

– it is an ongoing effort. Effective communication among team members is essential to ensure the IFSP is followed, families (or child care providers) are receiving the supports they need, and the child and family are making appropriate progress toward outcomes. One member of the team is identified as the primary service coordinator, who organizes and is responsible for ensuring implementation of the IFSP. Effective IFSP teams are guided by a transdisciplinary model of service delivery (i.e.,

the IFSP. Effective IFSP teams are guided by a transdisciplinary model of service delivery (i.e., one professional provides the weekly supports with back-up from other team members (McWilliam 2010)) and use an interagency approach (involves professionals from a several agencies).

##### Present Levels of Development  The next section of the IFSP outlines the child’s present level of development. Each family will receive a multidisciplinary assessment of their child’s unique strengths and needs. The child’s present level of development should be assessed across five areas: motor, cognitive, communication, social emotional, and adaptive. This information should be gathered from valid and reliable assessments and authentic observations in the natural environments. This

from valid and reliable assessments and authentic observations in the natural environments. This section should also include parent or caregiver reports about their child’s preferences, strengths, and characteristics.

##### Family’s Resources, Priorities, and Concerns  The IFSP team also will gather information about the family’s resources, priorities, and concerns (e.g., Family Interest Survey, Cripe and Bricker 1993). This information can be gathered through informal conversations, interview, or assessments. A statement about the family’s concerns, priorities, and resources related to enhancing their child’s development is required on all IFSPs.

##### Child Outcomes  The next section on the IFSP delineates the child outcomes. These are developed by the IFSP team (including the family) and directly related to the assessment information. Many young children with autism will need outcomes related to social or communication skills. Outcomes should be functional, generative, measurable, instructional, and participation-based. Functional goals are directly related to skills the child will need for independent performance within the family’s

are directly related to skills the child will need for independent performance within the family’s daily routines and activities. Generative goals are related to skills the child will use across the family’s routines and materials at home, the various community settings the family and child participate in, and people the child interacts with. Measurable goals are clearly operationalized to directly link to an intervention plan for the family and so that the child’s progress can be efficiently

link to an intervention plan for the family and so that the child’s progress can be efficiently monitored over time. Instructional goals refer to behaviors and skills the family will have opportunities to practice with the child across their daily routines with the materials they have at home. Finally, goals for young children should be participation-based. This means they explicitly refer to the context in which the skill is needed to ensure everyone on the team understands how the goal helps

context in which the skill is needed to ensure everyone on the team understands how the goal helps the child participate in the family’s daily activities and routines (McWilliam 2010). The criteria, procedures, and timelines for measuring progress also are included in this section. Collaboration in developing child outcomes is essential to build the family’s capacity and increase the child’s participation in the family’s routines and activities. Example child goals are: 1. Kenan will

participation in the family’s routines and activities. Example child goals are: 1. Kenan will participate in meals, playtime (after bath, after breakfast), and routines (diapering, bath time, getting dressed, waking up) by looking at mom or dad and babbling. We will know he can do this when he looks at mom or dad’s eyes and babbles three times during five activities per day for 1 week. 2. Luke will participate in breakfast, lunch, mid-afternoon snack, and dinner by feeding himself

2. Luke will participate in breakfast, lunch, mid-afternoon snack, and dinner by feeding himself independently. We will know he can do this when he uses his hands to pick up 15 small pieces of food to put in his mouth or uses his hands to pick up his spoon to put at least 10 bites of soft foods in his mouth at each meal for 1 week. Goals should be written so they can be embedded into daily routines and natural settings, emphasize functional skills, and increase participation in activities and

and natural settings, emphasize functional skills, and increase participation in activities and settings.

##### Family Outcomes  The IFSP must include at least one family outcome. As with the child outcomes, the family outcomes also are the based on the family’s priorities, resources, and concerns. These outcomes are explicitly focused on setting goals to build the family’s capacity to support their child’s growth and development. The family selects their outcomes based on things they would like to start working on, including the any resources or needs identified through the assessment. Example

start working on, including the any resources or needs identified through the assessment. Example family outcomes might be (adapted from McWilliam 2010): 1. Janice will keep Maize engaged during at least 30 min of church each week for a month so Janice can start going to church again. 2. All five members of the McDonalds family will spend 1 h each night engaged in a fun activity with the TVoff. 3. Anne will rate Alyse’s bedtime routine as successful and easy with 4 months. These family outcomes

Anne will rate Alyse’s bedtime routine as successful and easy with 4 months. These family outcomes are based on specific concerns reported by the family, directly related to the families current priorities, and developed in consideration of the family’s available resources and include measurable criterion to ensure the team will know when the outcome has been achieved.

##### Natural Environments  The next section of the IFSP identifies the settings where the family spends most of their time and the activities they enjoy. The natural setting might be the home, child care, relative’s house, or community center. The family’s valued activities and routines are listed to identify needs and opportunities for learning. All child outcomes should be developed with the natural setting, valued activities, and daily routines in mind; the outcomes should support the

the natural setting, valued activities, and daily routines in mind; the outcomes should support the child’s independent participation in family routines and activities. Also, all service and supports should be provided in the natural settings. In fact, IDEA Part C regulations state: “To the maximum extent appropriate to the needs of the child, early intervention services must be provided in natural environments, including the home and community settings in which children without disabilities

environments, including the home and community settings in which children without disabilities participate” 34CFR 303.12(b), and “natural environments means settings that are natural or normal for the child’s age peers who have no disabilities” 34CFR 303.18.

##### Services  The next section of the IFSP delineates the specific services and supports needed to support the child and family in achieving the stated outcomes. The primary service provider will provide or coordinate the provision of material, emotional, or informational supports to build the family’s capacity to promote their child’s development. Services and supports are provided through family coaching in the natural setting (often referred to as home visiting) or consultation with the

coaching in the natural setting (often referred to as home visiting) or consultation with the child care center within the child’s daily routines. Material supports might include necessary equipment (e.g., a communication device, supported seating) or basic necessities (e.g., calling an agency to help the family get diapers or housing subsidies). Emotional support might include sensitivity to the family’s culture and needs, positive feedback, and responsivity (e.g., listen to the family,

to the family’s culture and needs, positive feedback, and responsivity (e.g., listen to the family, respond to calls, or emails quickly). Informational support might include information about the child’s disability, community resources, and strategies for providing learning opportunities throughout the day. In general, services and supports should be provided directly to the family rather than to the child (Jung 2003). In this manner, the family is supported and given the resources to provide

the child (Jung 2003). In this manner, the family is supported and given the resources to provide the “intervention” all day long across daily routines and activities with relevant materials. Effective service providers recognize that the family can support their child’s development by providing numerous natural learning opportunities throughout the day between scheduled home visits (McWilliam 2010). Also, supports and services should reflect the family’s culture and experiences. This section

Also, supports and services should reflect the family’s culture and experiences. This section also will specify the projected dates of when the services will begin, how often they will occur, and how long they will last.

##### Evaluation  The IFSP also includes a section specifying how the child and family’s progress will be measured and evaluated. This section should include the criteria, procedures, and timelines used to measure progress toward outcomes. Appropriately written outcomes will include a measurable criterion (e.g., 5 times across 5 days, 10 times per day for 1 week). However, this section ensures the child and family’s progress is intentionally and systematically monitored. Progress on each

the child and family’s progress is intentionally and systematically monitored. Progress on each outcome must be measured and documented, and reviewed at least every 6 months. The team will assess progress and determine if the supports are effective or if changes need to be made to the IFSP. As mentioned above, the IFSP is meant to delineate an ongoing process of support for the family and child to help the family recognize their own strengths, resources, and capacity to promote their child’s

to help the family recognize their own strengths, resources, and capacity to promote their child’s development.

##### Transition Plan  The IFSP includes a section to plan for the transition to special education services (Part B of IDEA which refers to special education services for children 3 years and older) and an IEP, or other appropriate agencies or resources for when the child turns 3. The service coordinator must initiate this conversation and plan with the family at least 6 months prior to the child’s third birthday.

##### Non-part C Services  The final section of the IFSP delineates the activities or services provided by agencies outside of Part C. This is meant to help the service coordinator and family integrate all service and supports. Occasionally, families are charged for these non-Part C services, which should be noted on the IFSP.

#### Future Directions  ##### Summary and Future Directions  An Individualized Education Program (IFSP) is the legal documentation of a service plan developed with a team of professionals based on the strengths and needs of one child and their family. IDEA mandates that all children younger than three receiving Part C services have an IFSP. Effective IFSPs ensure that children with autism and their families receive early and intentional intervention in the natural setting to support the

and their families receive early and intentional intervention in the natural setting to support the family’s capacity to promote their child’s development to prevent or alleviate further delays. Despite the plethora of research on the benefits of early, intentional intervention for children with or at risk for disabilities, early intervention (specifically effective family coaching) is a largely understudied topic. Future research should examine effective family coaching, home visiting, and

understudied topic. Future research should examine effective family coaching, home visiting, and strategies for developing effective IFSP.

### Individualized Plan for Employment (IPE)  Ernst O. VanBergeijk Vocational Independence Program, New York Institute of Technology, Central Islip, NY, USA

Threshold Program, Lesley University, Cambridge, MA, USA  #### Definition  An Individualized Plan for Employment (IPE) (also known as an Individualized Employment Plan [IEP]) is a contractual agreement between an individual with a disability and a state office of vocational and rehabilitative services. IPEs help inform the individual regarding what services they will receive and help them make informed choices regarding their vocational training. This information includes the cost, duration,

informed choices regarding their vocational training. This information includes the cost, duration, and accessibility of potential services. This document is written collaboratively between the client and vocational rehabilitative counselor. The IPE must contain the following information: (1) the date that services begin and the date by which the vocational objective is to be achieved; (2) the specific services that are to be offered to the client or consumer; (3) objective criteria, evaluation

services that are to be offered to the client or consumer; (3) objective criteria, evaluation procedures, and schedules for determining progress toward goals; and (4) a description of the Client Assistance Program (CAP) (Vision Aware 2010). For each service described in the IPE, specific information must be listed. Each service must have a date by which the service will be initiated and a date by which the specific vocational goal will be reached. The IPE must describe the services offered to

which the specific vocational goal will be reached. The IPE must describe the services offered to the client in detail. The vocational goals are to be written in a manner that is behaviorally oriented so that the vocational goal is observable and measurable. How the attainment of the goal will be assessed must be written into the IPE. The IPE should be reviewed at least annually (Joint Committee on Administrative Rules n.d.). The list of services available to a client who is eligible for

on Administrative Rules n.d.). The list of services available to a client who is eligible for vocational and rehabilitative services from a state office includes the following:

*   Counseling and guidance. *   Physical and mental restoration, including corrective surgery and ocular prosthetic devices.

*   Vocational and other training services. *   Services to the family. *   Interpretive services for those who are deaf. *   Reading services. *   Personal adjustment services. *   Provision of telecommunications and other technical aids. *   Placement in suitable employment. *   Post-employment services if the client’s job is in jeopardy. *   Assistance in obtaining occupational licenses, tools, equipment, and initial stocks for small businesses.

*   Job coaching services. *   Assistance in obtaining other goods and services that could aid the client in obtaining employment.
*   In addition, the vocational objective must contain a formal job title that is listed in the Occupational Outlook Handbook, with the code number, if available (Vision Aware 2010).
 #### Current Knowledge  The range of unemployment figures varies from 50% to 75% for people with disabilities in general and over 90% for individuals with autism spectrum disorders.

#### Future Directions  A coordination of entitlements must be developed for young adults who are transitioning between secondary school and postsecondary education. There is potential conflict between the transition plans outlined in IDEA, the new provisions of the Higher Education Opportunity Act of 2008, and the Rehabilitation Act Amendments of 1998 in terms of which law or agency will pay for additional training if that training is conducted in an institution of higher education such as

for additional training if that training is conducted in an institution of higher education such as through a Comprehensive Transition and Postsecondary Program (CTP) at a college or university.

### Individualized Transition Plan (ITP)  Paul Wehman1 and Staci Carr2 1Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, USA

2UniqueKids Inc, Moseley, VA, USA  #### Definition  Individualized Transition Plan, or ITP, is a plan based on informal and formal assessments that is used to identify the desired and expected outcomes by students and their families once they leave school as well as the supports needed to achieve these outcomes. This plan is developed collaboratively with the student, caregivers, vocational educators, vocational rehabilitation counselors, and current IEP team members. A thorough plan will

educators, vocational rehabilitation counselors, and current IEP team members. A thorough plan will include the following: post-secondary education opportunities, employment opportunities, living opportunities, financial and income needs, friendship and socialization needs, transportation needs, health and medical needs, and legal/advocacy needs.

#### Historical Background  Transitional planning, for youth with disabilities, was first mandated by federal legislation in 1990 with the passing of PL 101-476, IDEA, 1990. The reauthorization of IDEA in 1997 added new components to the formal process of transitional services. In 1997, the Individuals with Disabilities Education Act was amended to strengthen accountability and academic expectations for children with disabilities across the United States. In particular, transition services

for children with disabilities across the United States. In particular, transition services were more clearly outlined and defined as a coordinated set of activities for a student, with a disability, that (a) is designed within an outcome oriented process that promotes movement from school to post-school activities, including postsecondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living,

supported employment), continuing and adult education, adult services, independent living, or community participation; (b) is based on the student’s needs, taking into account the student’s preferences and interests; (c) includes instruction, related services, community experiences, the development of employment and other post-school objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation (Section 602). IDEA ’97 states: (vii)(I) beginning at

skills and functional vocational evaluation (Section 602). IDEA ’97 states: (vii)(I) beginning at age 14, and updated annually, a statement of the transition service needs of the child. . .that focuses on the child’s courses of study (such as participation in advanced-placement courses of a vocational education program)’ (ii) beginning at age 16 (or younger, if determined appropriate by the EP Team), a statement of needed transition services for the child, including when appropriate, a

EP Team), a statement of needed transition services for the child, including when appropriate, a statement of the interagency responsibilities or any needed linkages; (III) beginning at least one year before the child reaches the age of majority under State law, a statement that the child has been informed of his or her rights under this title that will transfer to the child. . .on reaching the age of majority under 615(m) Section 614(d). This legislature advised that transition services be

age of majority under 615(m) Section 614(d). This legislature advised that transition services be addressed in the IEP at age 14; therefore, at age 14, the IEP becomes an Individualized Transition Plan or ITP.

#### Current Knowledge  In preparation for the development of this ITP, transitional assessment must already be completed. This was a long range plan for what students will do in their remaining years in school as well as what they will do when they exit school. This plan identifies the supports they will receive in school as well as other nonschool supports. In this statement, interagency supports can be identified as well as activities to address transitional needs within home and community

can be identified as well as activities to address transitional needs within home and community environments. IDEA 2004 changed the age of transitional planning from age 14 to age 16. This is an interesting change considering that in 1990, the U.-S. House of Representatives Committee who reported on the authorization of 1990 stated: age 16 may be too late for many students, particularly those at risk for dropping out of school and those with the most severe disabilities. Even for those students

for dropping out of school and those with the most severe disabilities. Even for those students who stay in school until age 18, many will need more than two years of transitional services. Students with disabilities are dropping out of school before age 16, feeling that the educational system has little to offer them. Initiating services at a younger age will be critical. (U.S. House of Representatives Report No. 101-554, 10, 1990) States however, may decide to continue mandating transitional

Report No. 101-554, 10, 1990) States however, may decide to continue mandating transitional services at age 14. This model is fairly straightforward, including three major components (Storms et al. 2000). First, every student and his or her family should be advised to (1) think about post-high-school goals and (2) develop a plan including supports and services needed to accomplish these goals. (3) The linkages to post-high-school services, supports, and programs need to be identified and made

The linkages to post-high-school services, supports, and programs need to be identified and made before the student exits high school. The provisions on transition (IDEA 2004) indicate that transitional services should be based on students’ strengths, needs, interests, and preferences. The addition of “strengths” indicates that transition assessment summary should not just identify areas of need (deficits) but should also provide a description of student’s knowledge and skills relative to

need (deficits) but should also provide a description of student’s knowledge and skills relative to functioning in post-school environments as well as the planning that has been accomplished.

### Individuals with Disabilities Education Act (IDEA)  Jacqueline Kelleher Education, Sacred Heart University Isabelle Farrington School of Education, Southern Connecticut State University, Fairfield, CT, USA

#### Definition  The Individuals with Disabilities Education Act (IDEA) is an amended version of a landmark federal law passed in 1975 called the Education for All Handicapped Children Act or Public Law 94–142. The IDEA, which has been in place since 1990 with key amendments and revisions occurring as part of reauthorization proceedings in 1997 and 2004, ensures that children and youth with disabilities are afforded basic rights such as a free appropriate public education (FAPE) in the least

are afforded basic rights such as a free appropriate public education (FAPE) in the least restrictive environment (LRE), regardless of the nature or severity of the disability. There are four parts to the IDEA that pertain to the following: general provisions under the law (Part A), eligible children ages 3–21 (Part B) and ages 0–2 (Part C), and technical assistance available to state and local education agencies (Part D). In addition to FAPE in the LRE, the IDEA requirements are in place to

education agencies (Part D). In addition to FAPE in the LRE, the IDEA requirements are in place to ensure each state and locality makes provisions regarding identification, due process, individualized education programs (IEPs) or individualized family services plans (IFSPs), nondiscriminatory evaluations, confidentiality, personnel development, and other basic rights established for eligible children and youth with disabilities. The IDEA is known as funding legislation. Part B of the IDEA

children and youth with disabilities. The IDEA is known as funding legislation. Part B of the IDEA provides funds to state educational agencies (SEAs) and local educational agencies (LEAs) to help them ensure that children with disabilities, including children aged 3 through 5, have access to a free appropriate public education to meet each child’s unique needs and prepare him or her for further education, employment, and independent living. Part C of the IDEA provides funds to each state-led

education, employment, and independent living. Part C of the IDEA provides funds to each state-led agency designated by the governor to implement state-wide systems of coordinated, comprehensive, multidisciplinary interagency programs and make early intervention services available to infants and toddlers with disabilities and their families. While all states participate in IDEA mandates and requirements, the law applies only to those agencies receiving federal funds; for example, an independent

the law applies only to those agencies receiving federal funds; for example, an independent or private school not accepting federal dollars may be exempt from IDEA requirements and regulations; however, this does not exempt them from civil rights legislation in place for individuals with disabilities such as the Americans with Disabilities Act (ADA) or Section 504 of the Rehabilitation Act.

#### Historical Background  As one effort to address years of widespread discrimination against individuals with disabilities with respect to access to quality education and educational services, the United States Congress passed Public Law 94–142 in 1975, the Education for All Handicapped Children Act, mandating school services for children with disabilities. Over time, the law has been amended and revised into its current iteration, the Individuals with Disabilities Education Act or IDEA,

and revised into its current iteration, the Individuals with Disabilities Education Act or IDEA, renamed in 1990, to reflect its mandates focused on the educational needs of children and youth with disabilities ages birth through the 22nd birthday. Since the renaming of PL 94–142, the IDEA has added protections and regulations with each reauthorization such as the development and review at least annually of an individualized education program (IEP) for eligible children ages 3–21 or an

least annually of an individualized education program (IEP) for eligible children ages 3–21 or an individualized family services plan (IFSP) for infants and toddlers. Families have been specifically named and included in the IDEA as full participants in the decision-making process with legal protections written into the law to ensure parent and student rights are not violated. As part of its most recent modifications in 2004, the IDEA now includes regulations for special services including

most recent modifications in 2004, the IDEA now includes regulations for special services including transition services and protections addressing disciplinary issues for eligible children under the Act.

#### Current Knowledge  The Individuals with Disabilities Education Act (IDEA) is the primary federal program that authorizes state and local aid for special education and related services for eligible children with disabilities. According to IDEA, the term “children with disabilities” means those children evaluated in accordance with Regs. Secs. 300.530-300.534 as having mental retardation, hearing impairments including deafness, speech or language impairments, visual impairments including

impairments including deafness, speech or language impairments, visual impairments including blindness, serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, other health impairments, specific learning disabilities, deaf blindness, or multiple disabilities and who because of those impairments need special education and related services. On December 3, 2004, President Bush signed the Individuals with Disabilities Education Improvement Act (P.L. 108–446), a major

Bush signed the Individuals with Disabilities Education Improvement Act (P.L. 108–446), a major reauthorization and revision of IDEA. The IDEA 2004 and its federal statutes and regulations currently serve millions of eligible children and youth with disabilities under its provisions. With a commitment to ensuring the provision of a free appropriate public education for those found eligible for a special education and related services, past and current issues for states and citizens concern

a special education and related services, past and current issues for states and citizens concern funding. The most significant funding stream to state education agencies (SEAs), who in turn disseminate funds to local education agencies (LEAs), is that authorized by Part B, with a majority of funds allocated toward Part B initiatives. Currently, Congress has set a maximum target for the federal contribution to special education spending equal to 40% of the estimated excess cost of educating

contribution to special education spending equal to 40% of the estimated excess cost of educating children with disabilities. Thus, if the program were “fully funded,” the states would receive their maximum grants, calculated at 40% of the national average per pupil expenditure times the number of children with disabilities served in the school year 2004–2005, adjusted for population changes. Under the act, the count of children with disabilities cannot exceed 12% of the state’s total school

the act, the count of children with disabilities cannot exceed 12% of the state’s total school population. Current knowledge regarding the funding formula and resource allocations to each SEA is that there is a shortfall in IDEA funding, with costs not reimbursed or absorbed by the federal government assumed by the states and local school districts. The American Recovery and Reinvestment Act of 2009 (ARRA) appropriated new funding for programs under Parts B and C of the Individuals with

of 2009 (ARRA) appropriated new funding for programs under Parts B and C of the Individuals with Disabilities Education Act (IDEA). The IDEA 2004, which is currently up for reauthorization as of this writing, is monitored and enforced at the federal level by the Office of Special Education Programs (OSEP).

#### Future Directions  The Individuals with Disabilities Education (IDEA) Act of 2004 is under review for reauthorization.
 ### Infant/Toddler Checklist  Tony Charman Centre for Research in Autism and Education, Department of Psychology and Human Development, Institute of Education, University of London, London, UK

#### Description  The Infant Toddler Checklist (ITC) is a one page developmental screener that asks about early social communication development. It has been normed on over 2000 infants and toddlers and can be used with children between 6 and 24 months of age.

#### Historical Background  Wetherby and colleagues (Wetherby et al. 2008; Wetherby et al. 2004) developed an early screening tool that can be used from 6 to 24 months of age – the Infant Toddler Checklist (ITC). The ITC is a broader developmental screen that successfully identifies children with developmental, in particular language and communication, delays as well as children with an autism spectrum disorder (ASD). The ITC is one component of the suite of early social communication

autism spectrum disorder (ASD). The ITC is one component of the suite of early social communication assessments, known as the Communication and Symbolic Behavior Scales-Developmental Profile (CSBS-DP: Wetherby and Prizant 2002). The ITC can be downloaded for free at: http://firstwords.fsu.edu/toddlerChecklist.html and is currently available in English, Spanish, Slovenian, Chinese, and German. The ITC consists of 24 questions about early social communication behavior (e.g., “Does your child let

ITC consists of 24 questions about early social communication behavior (e.g., “Does your child let you know when he/she needs help or wants an object out of reach?”; “When you call your child’s name, does he/she respond by looking or turning toward you?”). Unusually for early ASD screening instruments the ITC has norms developed from a reference sample of over 2000 infants and toddlers (Wetherby and Prizant 2002).

#### Psychometric Data  In an initial study Wetherby et al. (2004) screened 3021 children from a population sample between 6 and 24 months of age. Low scorers (<10th centile) and a random subsample scoring within the typical range were seen during the second year of life for face-to-face behavioral assessments and again around their third birthday. Eighteen children received a diagnosis of ASD and 18 a diagnosis of developmental delay (DD). Sensitivity of the ITC for identifying ASD was 94.4%

18 a diagnosis of developmental delay (DD). Sensitivity of the ITC for identifying ASD was 94.4% (17/18) and for identifying DD was 83.3% (15/18). Thus, from this initial study the instrument parameters of the ITC for identifying toddlers with ASD and DD appeared highly promising. In their most recent work, Wetherby and colleagues have shown that it is possible to prospectively identify toward the end of the first year of life children who will go on to have a diagnosis of an ASD (Wetherby et

end of the first year of life children who will go on to have a diagnosis of an ASD (Wetherby et al. 2008). From a larger sample of 5385 were screened on multiple occasions (every 3 months) some from as young as 6 months. The authors describe how children who fell below various 10% centile cut-points on the social composite, symbolic composite, and speech composite were invited for face-to-face assessments. In all, nearly 1000 children were assessed (N ¼ 978). The positive predictive value

assessments. In all, nearly 1000 children were assessed (N ¼ 978). The positive predictive value (PPV) of the ITC parental checklist for identifying children with delayed development rose from 42.9% on those screened at 6–8 months of age to 79.0% in those screened at 21–24 months of age. In terms of identifying children with an ASD, 56 of the 60 children with an ASD were “flagged” as screen positive on the ITC at first administration, including some from assessments between 9 and 14 months of

on the ITC at first administration, including some from assessments between 9 and 14 months of age. The instrument properties of the ITC, in common with many other ASD screens will require further follow-up of these sample to determine whether there have been other children who go on to develop an ASD who were picked up by the screen.

#### Clinical Uses  However, this series of studies on the ITC is one of the most developed screening studies undertaken so far. It shows good promise in identifying children with ASD and other developmental/communication difficulties. It also has three notable features. First, it was developed as a surveillance tool. Surveillance involves a parent-professional partnership that takes a broader look at developmental and behavioral skills and progress over time. It combines the observations of

look at developmental and behavioral skills and progress over time. It combines the observations of parents with the developmental knowledge of the professional and the deployment of specific tests. Second, it was developed as part of a suite of assessments from the ITC parental checklist to the direct assessment the CSBS-DP. Finally, it was intended to capture not only ASD but also children with other developmental and communication delays. Within general child health settings this holds

with other developmental and communication delays. Within general child health settings this holds promise as a broader screener that clinicians can use to identify children who warrant assessment.

### Infantile Spasms/West Syndrome  Raili Riikonen Department of Child Neurology, University of Kuopio, Kuopio, Finland  Infantile spasms or West syndrome consists of infantile spasms, hypsarrhythmia, and mental retardation. The spasms are usually resistant to conventional antiepileptic drugs. The typical syndrome has its onset between 3 and 7 months of age and seldom after age of 1 year. Now, however, it is known that there is a great variability of the features. Any feature of this classical

it is known that there is a great variability of the features. Any feature of this classical triad may be missing.

#### Categorization  According to the up-to-date International League against Epilepsy (ILAE 2001) Classification, West syndrome is an epileptic syndrome consisting of clinical spasms usually in clusters with epileptiform EEG, with onset usually less than 2 years of age. West syndrome is an epileptic encephalopathy where cognitive, motor and/or sensory functions are altered by the epilepsy. Two main groups of the syndrome are recognized: symptomatic and cryptogenic. In symptomatic (80%)

Two main groups of the syndrome are recognized: symptomatic and cryptogenic. In symptomatic (80%) spasms, there is a history of pre-, peri-, or postnatal damage or disease, and the pre-disposing etiology can be identified. In cryptogenic (15–20%) spasms, there is normal development prior to the onset of the spasms, and no known cause is revealed by clinical and neuroradiological examinations. This group has a probably symptomatic etiology, but underlying causes remain hidden. The rare

This group has a probably symptomatic etiology, but underlying causes remain hidden. The rare idiopathic (5%) refers to a pure functional cerebral dysfunction. Genetic factors play an important role. The terms idiopathic and cryptogenic have been used as synonyms of each other in some studies. Classification depends heavily on the extent of the investigations performed.

#### Epidemiology  The incidence of West syndrome has been estimated to vary from 1.6 to 4.3 per 10,000 live births.
 #### Natural History, Prognostic Factors, Outcomes  Infantile spasms are a time-limited disorder, with spasms usually ceasing after a few (3–4) years, even when treatment is not successful. Spontaneous remission rate is 25% within 1 year of onset. However, most patients continue to have significant developmental delay. The mortality in the follow-up of 25–35 years is 33–35%.

##### Prognostic Factors  The primary goals of the treatment of infantile spasms are cessation of the spasms and improvement of the mental developmental outcome. Factors associated with a favorable outcome (Riikonen 2009) include: 1. No other seizures before onset of infantile spasms 2. Absence of atypical spasms, partial seizures, and asymmetric EEG abnormalities 3. Age of onset between 4 and 9 months The above-mentioned factors are also associated with cryptogenic etiology. 4. Early and

9 months The above-mentioned factors are also associated with cryptogenic etiology. 4. Early and sustained response to treatment 5. Short duration of hypsarrhythmia In the recent prospective UK study (Lux et al. 2005), the developmental outcome of children treated with hormonal (n ¼ 55) or vigabatrin (VGB) (n ¼ 52) therapy was compared at age 14 months. In infants with no identified underlying etiology (n ¼ 46), the mean Vineland Adaptive Behavioral Scale scores were higher in those allocated

(n ¼ 46), the mean Vineland Adaptive Behavioral Scale scores were higher in those allocated to hormone treatment than those allocated to VGB treatment. This difference was even greater at the age of 4 years (median difference 14 scores). Hormone treatment therefore seems to be the better first treatment (Darke et al. 2010).

##### Outcomes  ###### Short Term  If the etiology is cryptogenic the spasms will cease in 80%. If the etiology seems to be symptomatic the spasms will cease in 50%. However, at 3–4 months after starting treatment only 40–44% are seizure-free.

###### Long Term  We know the long-term outcome after corticotrophin (ACTH) therapy but not after VGB therapy. In Finland, 214 children were followed up for 25–35 years or until death (Riikonen 2001). This study assessed the death rate, autopsy findings, intellectual outcome using standardized psychometric tests, education, occupations, psychiatric disorders, and occurrence of epilepsy and follow-up EEG. The patients had been participants in a prospective study conducted in 1960s, and

follow-up EEG. The patients had been participants in a prospective study conducted in 1960s, and follow-up was obtained in 100% of the cases. The patients had been on the following treatments: large doses of ACTH (120 IU ¼ 0.12 mg/day) (N ¼ 54) or lower doses (20–40 IU ¼ 0.02–0.04 mg/day) (N ¼ 97). Large doses given for a relatively short period of 6 weeks were not more effective than the smaller doses. The long-term intellectual outcome was better in children treated with lower doses than with

doses. The long-term intellectual outcome was better in children treated with lower doses than with larger doses. One third died, of which a third died before the age of 3 years. Normal or mildly abnormal intelligence was present in a quarter. They went to normal school or school for educationally impaired children, a quarter to training school, and the rest were uneducable. Twenty-five percent had employment raging from professional to manual labor. Ten were married. Five had children,

had employment raging from professional to manual labor. Ten were married. Five had children, altogether ten healthy children. A quarter was institutionalized. A third was seizure-free, a fifth had daily seizures, and the rest had less frequent seizures. EEG was normal or slightly abnormal in 22% of the cases at the last examination. Focal abnormalities were seen in 37%. Focal abnormalities were equally frequent in patients with normal and patients with less favorable outcome. In several

were equally frequent in patients with normal and patients with less favorable outcome. In several studies, investigators have failed to find any correlation between various EEG features and long-term outcome. Kumagai et al. (2001) evaluated the long-term prognosis of 120 patients in Japan at the mean age of 25 years. This cohort suggested that 60% had a reasonable quality of life (such as walking, communication, eating, dressing, and toileting).

#### Autism and Infantile Spasms  ##### Epidemiology  Psychiatric disorders following infantile spasm have received relatively little attention in the literature. In Finland, a systematic search for autism was made for 192 children with infantile spasms and 24 patients had infantile autism (Riikonen and Amnell 1981). In a population-based study in a cohort with seizures in the first year of life (95 children), infantile spasms predicted a high risk for autism spectrum disorders (Saemundsen et

(95 children), infantile spasms predicted a high risk for autism spectrum disorders (Saemundsen et al. 2008).

##### Etiology and Pathogenesis  Epilepsy and/or epileptic EEG abnormalities are frequently associated with autistic disorders in children, but this does not necessarily imply that they are the cause. Nevertheless, there are different etiologies where a direct relationship between early epilepsies and autism may be suspected. The direct role of epilepsy can only be evaluated in longitudinal studies. It seems probable that the later psychiatric manifestation is connected with the same brain

It seems probable that the later psychiatric manifestation is connected with the same brain lesion which had earlier caused the infantile spasms. In the majority of cases, specific underlying causes cannot be identified. However, a number of factors are being investigated including infectious, metabolic, genetic, and environmental causes (Table 1). Large numbers of tests in the absence of a specific clinical indication are wasteful and unlikely to generate useful data for clinical care. The

clinical indication are wasteful and unlikely to generate useful data for clinical care. The frequency of autism in tuberous sclerosis is estimated as high as 8–14% among the subgroup of autistic individuals with a seizure disorder. Autistic behavior can often be seen (in 58%) in tuberous sclerosis and infantile spasms (Hunt and Dennis 1987). The presence of autism may arise if the tuberous sclerosis mutation occurs at critical stages of neural development of brain regions critical in the

sclerosis mutation occurs at critical stages of neural development of brain regions critical in the development of autism. Early epilepsy and functional deficits associated with the anatomical lesions in the temporal lobes may be associated with autism. There is emerging evidence that early onset electrophysiological disturbances within temporal lobes (and perhaps other locations) have a deleterious effect on the development and establishment of key social cognitive representations concerned

effect on the development and establishment of key social cognitive representations concerned with processing social information. Temporal abnormalities were found in 70% of the patients with autism (Riikonen and Amnell 1981). This corresponds with the positron emission tomography (PET) studies where 70% of the patients with infantile spasms and autism have bitemporal hypometabolism (Fig. 3). Location of tubers in the temporal lobes, however, does not seem not be a sufficient risk factor for

of tubers in the temporal lobes, however, does not seem not be a sufficient risk factor for development of autism. Very recently, it has been shown that seizure activity in the left temporal lobe is a risk factor for autism spectrum disorders in tuberous sclerosis (Numis et al. 2011).

Infantile Spasms/West Syndrome, Table 1 Etiological investigations of infantile spasms
*   Comprehensive history: Heritable disorders, pre- and perinatal events *   Clinical examination: Signs of tuberous sclerosis *   Fundoscopy: Phacomas, intrauterine infections, metabolic diseases *   MRI: Malformations, tubers, atrophy, myelination *   CSF: Cells, proteins, glucose, glycine, lactic acid, aminoacids, folate metabolites, neurotransmitters

*   Urine: Organic acids *   Serum: Amino acids *   Chromosomal abnormalities: If structural brain abnormalities, dysmorphic features

*   Pyridoxin (phosphate) 100 mg i.v. to screen pyridoxine-dependent seizures  ##### Differential Diagnosis  Severe sensory deficits may make false interpretation of the behavior of the child. Majority of children with autistic behavior are mentally retarded. Retarded children have a tendency to develop autistic behavior because of their cognitive and perceptual deficits and because of environmental deprivation during long-term stays in hospitals and institutions. It must be emphasized,

deprivation during long-term stays in hospitals and institutions. It must be emphasized, however, that autism and mental retardation are far from synonymous.

#### Treatment  Behavioral treatments remain the cornerstone of management. Early diagnosis of autism will allow for earlier treatment and better outcome.

##### Clinical Expression and Pathophysiology  ###### Clinical Expression  **Spasms** The spasms may be flexor, extensor, or, most commonly, mixed spasms. One child can have various types of the spasms. Spasms occur in clusters. The presence of subtle spasms, asymmetric or asynchronous spasms, and focal signs suggests a symptomatic etiology and are associated with unfavorable outcome in the long term. A number of investigators have documented the coexistence of partial seizures occurring in

term. A number of investigators have documented the coexistence of partial seizures occurring in patients with infantile spasms. They are common in drowsiness and especially on arousal or soon thereafter. A vast number of spasms are missed by parents when compared with those seen in video monitoring. The diagnosis of the spasms is easy when they are typical. However, the spasms are often misinterpreted and considered to be colic, startle responses, or normal infant behavior. Repetitive,

and considered to be colic, startle responses, or normal infant behavior. Repetitive, stereotyped characterization of any movements in infancy should arouse the suspicion of infantile spasms and lead to an immediate EEG examination.

**Electroencephalogram (EEG)** Hypsarrhythmia consists of a pattern of irregular, diffuse, asymmetric, high-voltage slow waves interspersed with sharp waves and spikes, distributed randomly throughout scalp recordings (total chaotic disorganization of cortical electrogenesis) (Fig. 1). The term “modified hypsarrhythmia” (occurring in about 40%) is used if there is some preservation of background rhythm, synchronous bursts of generalized spike-wave activity, significant asymmetry, or burst

rhythm, synchronous bursts of generalized spike-wave activity, significant asymmetry, or burst suppression of tracing. A constant focus of abnormal discharges may also precede, accompany, or follow hypsarrhythmia. Multifocal spikes may also evolve into hypsarrhythmia if there is a long delay before treatment of spasms. A transition from typical hypsarrhythmia to a pattern of multifocal spike activity during treatment with vigabatrin (VGB) is observed in a number of patients. Persistence of

activity during treatment with vigabatrin (VGB) is observed in a number of patients. Persistence of multifocality means that there are always spasms which may be subtle. The most common ictal pattern associated with symmetric spasms is a generalized slow wave, usually followed by attenuation of background activity (Fig. 2). The initial diagnosis of infantile spasms may require video-EEG studies in infants with symptomatic etiology who may show only subtle spasms. Constantly normal tracing,

in infants with symptomatic etiology who may show only subtle spasms. Constantly normal tracing, including sleep recording, rules out the diagnosis of infantile spasms. EEG should always include wakening and sleeping states.

**Autistic-like Behavior of an Infant** Sometimes the infant ceases to take interest in his surroundings, and blindness is suspected. This functional amaurosis is seen in association with missing or grossly abnormal patterns of visually evoked potentials and probably corresponds to perfusion defects involving the parieto-occipital areas. In addition, behavioral regression (autistic-like behavior) of an infant less than 1 year of age should lead to an EEG examination, in which hypsarrhythmia

of an infant less than 1 year of age should lead to an EEG examination, in which hypsarrhythmia may reveal the cause of regression.

**Pathophysiology of Infantile Spasms** Problems with modulation of neurotransmitters at a specific period of brain maturation are believed to be fundamental to the development of infantile spasms. The latter usually appears when at the age which corresponds to the critical period of maximal brain development and age and is supported as follows: Infantile spasms and hypsarrhythmia disappears spontaneously with age of high corticotrophin-releasing factor (CRF) abundance. Glucocorticoids have an

with age of high corticotrophin-releasing factor (CRF) abundance. Glucocorticoids have an accelerating effect on some physiological events. The molecular mechanisms which lead to the long-term consequences of infantile spasms are poorly understood. It has been suggested that early stress (injury or insult) during a critical pre- and perinatal period activates proconvulsant stress mechanisms, increasing CRF synthesis and activity, with resultant long-term effects (Brunson et al. 2001). Insults

CRF synthesis and activity, with resultant long-term effects (Brunson et al. 2001). Insults or stress in early life may affect the synthesis of insulin-like growth factor-1, which might play a role in disturbance of synaptogenesis and reduction of certain cognitive functions (Riikonen 2010). The existence of a latent period also raises the possibility of preventive intervention.

#### Evaluation and Differential Diagnosis  ##### Evaluation  The infantile spasms clinical evaluation begins with the history and physical examination of the patient. Evaluating the EEG is critical for the diagnosis of infantile spasms and for patient management. It is recommended that an EEG evaluation be conducted as soon as possible following the identification of spasms. Careful search for etiological factors should be done in every case to formulate a more accurate prognosis and

for etiological factors should be done in every case to formulate a more accurate prognosis and establishing the need for genetic counseling. Within symptomatic group, the etiologies for infantile spasms have traditionally been divided into pre-, peri-, and postnatal causes. Most studies identify prenatal etiologies as the most common, accounting almost 50% of symptomatic cases. More than 200 potential etiological factors for infantile spasms have been reported. However, they are not

200 potential etiological factors for infantile spasms have been reported. However, they are not necessarily causally related. History and physical examination alone may identify the majority of symptomatic spasms. MRI is the most important diagnostic tool. Seventy-percent will have established etiological diagnosis without need to conduct extensive testing (Table 1). MRI may need to be repeated after 18 months to 2 years after myelination of the brain is more complete as early scans may miss

after 18 months to 2 years after myelination of the brain is more complete as early scans may miss gray matter abnormalities. Inborn errors of metabolism are a rare but significant cause of infantile spasms. Often there have been preceding seizure types. Rarely, West syndrome occurs with single-gene metabolic disorders. While each of the genetic mutations is rare, collectively they comprise an increasing proportion of infantile spasms etiology (Table 2). Tuberous sclerosis is the most important

proportion of infantile spasms etiology (Table 2). Tuberous sclerosis is the most important genetically defined disease.

Infantile Spasms/West Syndrome, Table 2 Genetic causes of infantile spasms *   Tuberous sclerosis *   Aicardi syndrome *   Miller Dieker syndrome *   Progressive encephalopathy- hypsarrhythmia-optic atrophy (PEHO) syndrome *   Down syndrome *   X-linked: *   ARX aristaless-related homeobox gene *   CDKL5/STK9 kinase gene *   MECP2 *   STXBP1  ##### Differential Diagnosis  Syndromes closely related to West’s syndrome include infantile epileptic encephalopathy and early myoclonic encephalopathy.

to West’s syndrome include infantile epileptic encephalopathy and early myoclonic encephalopathy. Both are very rare syndromes. They are characterized by onset before 3 months of age and a severe course, with lack of psychomotor development. Response to ACTH is poor. Both syndromes have a burst-suppression pattern in EEG. West’s syndrome may be replaced in a quarter of patients by another severe epilepsy syndrome, Lennox-Gastaut syndrome, which is an important differential diagnosis for

severe epilepsy syndrome, Lennox-Gastaut syndrome, which is an important differential diagnosis for patients more than 1 year of age. There is a transition between the four syndromes.

#### Treatment  The delayed psychomotor development that characterizes epileptic encephalopathy justifies vigorous treatment. Many studies have shown that the cognitive outcome is better when the lead time to treatment is short (Riikonen 2009).

##### Short-Term Effects  Infantile spasms are usually resistant to conventional antiepileptic drugs. Most studies are dealing only with short-term effects of the drugs. The outcome measures should be the following: cessation of the spasms, resolution of hypsarrhythmia, relapse rate, absence of epilepsy and epileptiform EEG, cognition and behavior. More than 150 trials have carried out in the treatment of infantile spasms (Table 3). Steroids and vigabatrin are now the first-line drugs for

treatment of infantile spasms (Table 3). Steroids and vigabatrin are now the first-line drugs for infantile spasms. In a large data-based critical review of American Academy of Neurology and Child Neurology Society, nine ACTH prospective studies were analyzed (Mackay et al. 2004). It was concluded that there is insufficient data to recommend the optimal dosage and duration of ACTH. “ACTH is probably effective and vigabatrin possibly effective for short-term treatment of infantile spasms and

effective and vigabatrin possibly effective for short-term treatment of infantile spasms and possibly effective for children with tuberous sclerosis.”

Infantile Spasms/West Syndrome, Table 3 Alternative therapies in the treatment of infantile spasms: pooled data from different studies

| Therapy             | Number of patients | Response rate (%) | | :------------------ | :----------------- | :---------------- | | ACTH                | 476                | 59                | | Prednisone          | 26                 | 31                | | High-dose prednisone | 30                 | 70                | | Vigabatrin          | 1,026              | 37                | | High-dose valproate | 41                 | 54                | | Nitrazepam          | 27

valproate | 41                 | 54                | | Nitrazepam          | 27                 | 52                | | Pyridoxine          | 118                | 13                | | Zonisamide          | 119                | 27                | | Lamotrigine         | 30                 | 29                | | Topiramate          | 35                 | 29                | | Sultiame            | 17                 | 35                | | Ketogenic diet      | 104                | 37

| 17                 | 35                | | Ketogenic diet      | 104                | 37                |  ##### ACTH or Oral Steroids?  In a small prospective, randomized study, the efficacy of high-dose ACTH (150 IU/m2 for 2 weeks) was better than that of prednisone (2 mg/kg for 2 weeks) (Baram et al. 1996) but a small prospective

Inferior Colliculi Sara Jane Webb Psychiatry and Behavioral Sciences and UW Autism, Seattle Children’s Research Institute, University of Washington, Seattle, WA, USA  Definition The inferior colliculus is part of the central auditory system; specifically, it is located in the tectal region of the midbrain, posterior to the superior colliculus, and anterior to the trochlear nerve. The inferior colliculus is the “site of brain stem convergence and multisensory integration” (Winer and Schreiner

is the “site of brain stem convergence and multisensory integration” (Winer and Schreiner 2005, p. 3) containing neurons that are sensitive to interaural timing and intensity difference, which are important in sound localization. Other functions that have been shown to be related to this structure include sound integration, multisensory integration including startle reflex and vestibuloocular reflex, and amplitude modulation of frequencies necessary for detection of pitch.

As part of the central auditory pathway, the inferior colliculus receives projections from the superior olivary nuclei and the cochlear nuclei via the lateral lemniscus. The inferior colliculus sends projections to the medial geniculate nucleus, which in turn projects to the primary auditory cortex. The inferior colliculus consists of three regions – central nucleus, lateral nucleus, and dorsal cortex. The central nucleus is exclusively involved in auditory processing and is necessary for

cortex. The central nucleus is exclusively involved in auditory processing and is necessary for normal hearing. The central nucleus has numerous layers, arranged in a tonotopic map that is orthogonal to the layers. The lateral nucleus is multisensory, receiving both auditory and nonauditory input. The dorsal cortex receives projections from the cerebral cortex including auditory and somatosensory information. For an in-depth perspective of the inferior colliculus, please see Wilner and Schriner

information. For an in-depth perspective of the inferior colliculus, please see Wilner and Schriner The Inferior Colliculus (2005).

In animal models of autism, the gene autism susceptibility candidate 2 (Auts2) is expressed in the inferior and superior colliculi at embryonic day 19 of the mouse brain (Bedogni et al. 2010). Immunoreactive staining in the murine brain found high density of serotonin (5-HT) fibers in the inferior colliculus (Williams et al. 2005); selective serotonin reuptake inhibitor therapeutics are often prescribed in autism. In general, preclinical and animal models have implicated the brainstem in ASD

in autism. In general, preclinical and animal models have implicated the brainstem in ASD (e.g., Hashimoto et al. 1995; Rodier 2002), but the specificity to the inferior colliculus is unclear.

Functional activity of the inferior colliculus can be assessed via wave V of the brainstem evoked auditory potential (BAEP), which is thought to result from activity of the upper pons and inferior colliculus. Rosenhall et al. (2003) found increased BAEP wave III-V interpeak intervals in children with autism; Chen et al. (2003) found children with autism had longer latencies in wave III and V, as well as increased wave I–II and I–V interpeak latencies. However, a number of other reports (as

as well as increased wave I–II and I–V interpeak latencies. However, a number of other reports (as reviewed in Minshew et al. 2006) have not found consistent abnormalities in BAEP in individuals with autism or their family members. Deficits in tone perception in ASD have been found even in those children with intact click BAEPs; the authors suggested that early abnormal auditory pruning in the lateral lemniscus and inferior colliculus may lead to disrupted connections between the brainstem and

lemniscus and inferior colliculus may lead to disrupted connections between the brainstem and cortex and impact auditory processing of linguistic cues (Russo et al. 2008).

Definition Autism spectrum disorder (ASD) is characterized by altered connectivity in cortical regions, such as the inferior parietal lobe, involved with communication and emotion regulation (Hanaie et al. 2016). The inferior parietal lobe integrates sensory and motor information to generate spatiotemporal representations (Hanaie et al. 2016). Among ASD patients, several studies have shown reduced gray matter and cortex in the inferior parietal lobe (Brieber et al. 2007; Wallace et al. 2010).

gray matter and cortex in the inferior parietal lobe (Brieber et al. 2007; Wallace et al. 2010). Furthermore, these studies suggest that cortical thinning of the parietal and temporal cortices results from abnormal cortical growth in ASD patients (Wallace et al. 2010). Further research is required to elucidate the atypical neural growth and developmental mechanisms observed in ASD patients.

Definition The inferior temporal gyrus is positioned within the temporal lobe below the middle temporal sulcus. It runs the course of the temporal lobe from the anterior temporal pole back to the inferior occipital gyrus. It extends down to the ventral or bottom surface of the brain where it stops at the inferior sulcus. Functionally, this area of the cerebral cortex is associated with higher-level visual processing. That is, it helps us to determine what we are seeing and contains regions

visual processing. That is, it helps us to determine what we are seeing and contains regions sensitive to complex object features as well as particularly important categories of objects, such as faces and letters.

Definition Informal assessment of individuals with autism spectrum disorders (ASD) involves the collection of information about the individual, interpreting that information and applying it in a systematic manner, the purpose of which is to better understand the individual’s abilities. Although the overall goals of informal and formal assessment are similar, they differ in the use of the information collected, the manner in which the information is collected, and the type of information

collected, the manner in which the information is collected, and the type of information collected. The specific purpose of informal assessment is usually to use the information collected in order to set goals, identify intervention strategies, and measure intervention outcomes. In formal assessments, information is collected through the use of standardized, norm-referenced tests, whereas in informal assessment, information is based on careful observation of behaviors by the examiner. Types of

assessment, information is based on careful observation of behaviors by the examiner. Types of information accumulated during the process of informal assessment include profiles of behavior, of capabilities, of learning style, and of motivational strategies, which then serve to assist in the selection of techniques to facilitate development, to set learning goals, and, in general, to support the individual’s progress.

Historical Background Historically, assessment procedures focused on the formal collection of information in areas of concern for individuals with special needs or for those involved in the care of these individuals. Specifically, data were collected in order to substantiate strengths and weaknesses of the individual. The information was traditionally based on results from standardized testing of intelligence, aptitude, and academic abilities, as well as a medical history and current physical

intelligence, aptitude, and academic abilities, as well as a medical history and current physical status as part of the assessment battery. The assumption was that the comparison between individuals would be more informative if each person was assessed in a similar manner. Over time, it became clear that, although this type of assessment provided some important information about individuals with ASD, the results obtained needed to be interpreted with caution because the results obtained in

ASD, the results obtained needed to be interpreted with caution because the results obtained in formal assessments did not necessarily reflect the abilities of the individual with ASD. In addition, these data did not assess the interactional or motivational aspects of the individual but rather focused on whether or not the individual could perform particular skills. Despite the difficulties with systematic assessment of information, informal assessment continued to be perceived as less

with systematic assessment of information, informal assessment continued to be perceived as less professional than formal evaluations until the latter part of the twentieth century, when informal assessment procedures were incorporated into the assessment necessary for the development of the individualized education (IEP) objectives mandated by law (PL-94-142).

Current Knowledge As a result of recent changes in assessment, the reliance on formal tests has given way to a more person-centered approach (Lord et al. 2005). Professionals acknowledge that assessment needs to recognize changes in behavior and not focus exclusively on successful task performance. Informal assessment procedures target not only what individuals know but also how they interact with the environment and how they learn and understand and function in the world around them. Informal

the environment and how they learn and understand and function in the world around them. Informal assessment techniques do not require comparative norm-referenced groups against which to measure individuals’ performance but rather individuals’ performance is gauged by comparison to their own performance levels within the specific demands of the situation or programs. Assessment differs from diagnosis in that while diagnostic evaluation addresses the grouping of common features under the same

in that while diagnostic evaluation addresses the grouping of common features under the same label, assessment refers to evaluating the unique and distinctive characteristics of the individual (Klin et al. 2005). A diagnosis may assist in establishing eligibility for intervention services, whereas an assessment identifies the unique and specific profile of strengths and weaknesses of a particular individual. Although many people may share the ASD diagnostic label, the manifestation of ASD in

individual. Although many people may share the ASD diagnostic label, the manifestation of ASD in each individual is different, necessitating personal assessment. The purpose of such an assessment is to facilitate the development of individualized educational and behavior management programs tailored to the specifications of the individual (Hogan and Marcus 2008).

Both formal and informal diagnostic assessments yield information which aids in the confirmation of diagnosis by detailing the specific syndrome expression in a particular individual, but informal assessment also augments diagnostic ascertainment with information regarding the identification of intervention needs and/or by providing a method to assess the effects of treatment. To highlight the similarities and differences in the information provided by informal and formal assessments, school

similarities and differences in the information provided by informal and formal assessments, school psychologists were presented with information gleaned from formal or informal assessments and asked diagnostic and prescriptive questions about the children based on the information provided. Some qualitative differences in the efficacy of the information provided by each of the two types of assessment emerged. The behavioral descriptions from informal assessments provided the type of information

emerged. The behavioral descriptions from informal assessments provided the type of information necessary for identifying autistic symptomotology more correctly than information from formal assessments (Levy et al. 2009). While the information from both formal and informal assessments was found to be helpful in making Individualized Educational Program (IEP) decisions, the suggested goals which emerged from each type of assessment were in different domains. Data from informal assessments led to

from each type of assessment were in different domains. Data from informal assessments led to goals in the areas of receptive language and behavior, whereas data from formal assessments led to academic goals, such as reading. In conclusion, this research reinforced the need for the information acquired from each type of assessment. Those who had received reports based on formal assessments requested more informal information and those who had received informal assessment information desired

more informal information and those who had received informal assessment information desired more formal data (Spears et al. 2001). Thus, the complementary information which is obtained from formal and informal assessments is essential to a comprehensive understanding of individuals with ASD.

The goals of informal assessment include gaining the most valuable information about individuals for whom traditional testing situations are inappropriate. Significant impairments in language and communication have an impact on the ability of these individuals to comprehend the language demands of standardized testing procedures. In addition, the social deficits in reciprocity and social cognition which are central to ASD present particular challenges when testing individuals with ASD.

cognition which are central to ASD present particular challenges when testing individuals with ASD. Finally, the behavioral and cognitive issues revolving around motivation, sensory interests, and repetitive, restricted areas of interest necessitate adaptations which often invalidate the standardized procedures of administration (Volkmar et al. 2005). Thus, because standardized assessments require the understanding of verbal instructions, are based on social reinforcement, and entail

require the understanding of verbal instructions, are based on social reinforcement, and entail compliance, informal assessments are recommended for individuals with ASD (Lerman et al. 2004). Informal assessment is based on direct behavioral observations. This is accomplished through clinical observations of the individual’s functioning in natural settings or in a formal assessment context, and data may be collected in a variety of settings, including classroom, workplace, home, clinic, and

data may be collected in a variety of settings, including classroom, workplace, home, clinic, and others. The physical environment, task presentation, level of interest, and past learning experience can all influence the assessment results and must be considered in understanding the results from the assessment. Informal assessment requires no formal time constraints or standardized procedures, and therefore, the examiner can become more familiar with the individual and establish rapport.

Designing an assessment to elicit certain behaviors can also provide salient information. Therefore, it is important to take the individual behavioral expression of the triad of impairments upon which the diagnosis of ASD is based (American Psychiatric Association [APA] 2000) into consideration during informal assessments. Noting communication strategies, social interactional patterns, and repetitive, restrictive behaviors is an integral part of any assessment for individuals with ASD. For

restrictive behaviors is an integral part of any assessment for individuals with ASD. For example, careful attention should be paid to the manner in which the individual asks for help. Likewise, it is important to note with whom the individual chooses to spend time and what behaviors affect the interactions. These parameters change according to the age and level of functioning of the individual being assessed. For example, when assessing a young child with ASD, it may be appropriate to allow

being assessed. For example, when assessing a young child with ASD, it may be appropriate to allow the child to choose the object, task, or activity, thus beginning with a high interest task in order to maximize motivation. It is within the nature of this type of assessment that the examiner is free to vary the number and order of tasks. Examiners should be sensitive to the child’s activity level, attention span, and tolerance for highly structured activity when presenting the different types

attention span, and tolerance for highly structured activity when presenting the different types of tasks. It has been found helpful, especially with developmentally young children, to balance activities between those which are sedentary and require focused attention and those which are more physical in nature in order to maintain interest and avoid frustration. Most evaluations of this type continue approximately 30–40 min, but they can vary in duration. Assessments such as these should be

approximately 30–40 min, but they can vary in duration. Assessments such as these should be conducted in a relatively quiet, brightly lit room, but, if appropriate, can incorporate any space and activity such as walking in unfamiliar areas, which provides an opportunity to see how the child reacts to new places, people, and even experiences. Throughout the session, the quality and the quantity of the child’s spontaneous initiations in language and behavior should be noted.

The behaviors observed during informal assessments should be recorded as they occur (Herzinger and Campbell 2007). While conducting an informal assessment, the examiner should find a way to document behavior as it appears in order to capture the quality of what is happening as well as the behavior itself. In order to facilitate data collection, it is crucial to establish a method which allows the examiner to take notes about each task, as well as to get an overall view of the items presented.

examiner to take notes about each task, as well as to get an overall view of the items presented. In order to make basic decisions regarding educational placement, services required, and initial programming suggestions, it is necessary to interpret the information. The interpretation should include summary points as well as precise and detailed examples of behavior observed, which then serve as the basis for specific intervention recommendations. Informal assessment of individuals with autism

the basis for specific intervention recommendations. Informal assessment of individuals with autism spectrum disorders is a challenging task and involves expertise from various disciplines. Multidisciplinary teams work together to decide what information should be collected in order to understand the individual, and once the information has been collected, they are instrumental in interpreting the significance and implications of this information for the individual. In summary, clinical

the significance and implications of this information for the individual. In summary, clinical observation of individuals with ASD is a valuable skill. Despite its complexity, it should lead to a more comprehensive understanding of the person and, as a result, a more individually tailored treatment/intervention plan.

Informal assessment is dependent on making the assessment appropriate for the child’s developmental level, bearing in mind that individuals with ASD often have uneven profiles of strengths and weaknesses. It is important to remember that no matter how much clinical and diagnostic information has been gained from an initial evaluation, it may or may not be representative of the individual’s functioning in other settings or with other people. In order to put initial evaluation information into

in other settings or with other people. In order to put initial evaluation information into perspective, it is helpful to solicit certain information from other sources such as parents and professionals. A parent interview can often provide supplementary information which assists in the interpretation of the information gleaned from informal assessment. If possible, parents should be interviewed while their child is not present. Parents and other professionals can add specific information about

their child is not present. Parents and other professionals can add specific information about the child’s cognitive and language abilities, as well as behavioral issues which may help the examiner make decisions regarding the results of the initial evaluation.

Since successful informal assessment is based on the clinical observational skills of the examiner rather on the specific tasks presented, the tasks themselves become less important. The value of the tasks in informal assessment lies in the fact that they serve as a vehicle for the examiner’s observations, with more emphasis placed on other elements which can supply important information regarding the individual being assessed. For example, using appealing and developmentally appropriate

the individual being assessed. For example, using appealing and developmentally appropriate materials is central to informal assessment. But carefully choosing the materials used in an assessment, it becomes possible to assess the individual’s potential for creativity and interaction, to elicit cognitive and behavior styles, and to assess the conditions under which the individual is more likely to communicate and be socially involved. Thus, the observational skills of the examiner are far more

communicate and be socially involved. Thus, the observational skills of the examiner are far more important than the specific tasks which provide the context for the observed behavior. The examiner must be able to remain flexible and react individually according to the individual’s interactive style and needs (National Research Council [NRC] 2001). Considerable clinical skill and experience are therefore needed in the use of informal assessment procedures. Above and beyond the results from

therefore needed in the use of informal assessment procedures. Above and beyond the results from standardized testing, informal assessment is an attempt to capture abilities and disabilities and behavior as they affect the individual’s daily life (Klin et al. 2005).

Few guidelines exist for conducting informal skill assessments or for interpreting the results with individuals with ASD. Some suggestions include evaluating the child’s performance on tasks from preexisting curriculum (Callahan et al. 2011), while others propose assessment of reinforcement techniques (Lerman et al. 2004). Herzinger and Campbell (2007) recommend using informal functional assessment techniques which focus on the child’s everyday adaptive functioning. Assessing behavior is an

techniques which focus on the child’s everyday adaptive functioning. Assessing behavior is an ongoing process designed to guide treatment planning. The results, describing characteristics and identifying the unique functional profile of each individual, can be used in planning intervention services. Informal assessment involves careful observation and integration of available information, while checking to see if additional information is necessary in order to develop a treatment plan. After

checking to see if additional information is necessary in order to develop a treatment plan. After delineating the various components of a possible intervention, treatment priorities need to be set by the parents and/or the professionals concerned. A treatment plan must be implemented after careful analysis of the information collected through informal assessment procedures outlined above. A mechanism for tracking individual progress and a system for ongoing assessment permit timely adjustments

for tracking individual progress and a system for ongoing assessment permit timely adjustments to the intervention program. Thus, informal assessment documents functioning before, during, and after intervention and is crucial for evaluating changes and progress over time. Employing assessment information in order to measure post intervention status is one way to evaluate treatment decisions and to specify the aspects of intervention which succeeded with a particular individual. In sum, ongoing

specify the aspects of intervention which succeeded with a particular individual. In sum, ongoing informal assessment should be a part of every intervention program in order to monitor the child’s progress toward established goals and aid in decision making in future interventions (Magiati and Howlin 2001). The assessment of individuals with autism spectrum disorders is a challenging task and involves expertise from various disciplines. The triad of impairments present in ASD makes formal

involves expertise from various disciplines. The triad of impairments present in ASD makes formal assessment of individuals with ASD problematic and the incorporation of informal assessment techniques critical.

Future Directions In order to be effective, the scope of informal assessment must be as broad as the number of individuals being assessed. The tension between deciding on the elements to be observed and evaluated in informal assessments and the flexibility necessary for adapting the assessment to each individual with ASD seems insurmountable. The challenge inherent in informal assessment of individuals with ASD lies in abstracting the elements in present behavior from which future behavior can

with ASD lies in abstracting the elements in present behavior from which future behavior can be inferred (NRC 2001). Assessment is an attempt to examine and understand human nature and as such is imperfect. Goals for improving informal assessment include training qualified personnel who are familiar with the characteristics, response patterns, and behaviors which are typical of individuals with ASD. In addition to understanding ASD, training should include a basic understanding of informal

ASD. In addition to understanding ASD, training should include a basic understanding of informal assessment, and best practices in ASD, including monitoring outcomes. Many types of informal assessment procedures exist, and the professional must select the measures most appropriate for the individual with ASD being assessed. Informal assessment involves daily and ongoing evaluation of skills and behavior in order to monitor treatment outcomes (Hogan and Marcus 2008). It is particularly important

in order to monitor treatment outcomes (Hogan and Marcus 2008). It is particularly important to incorporate interactive modifications in the environment. It is also important to work collaboratively in order to create optimal intervention programs for individuals with ASD.

Information Processing Speed Emily S. Kuschner1 and Gregory L. Wallace2 1Center for Autism Spectrum Disorders, Division of Neuropsychology, Children’s National Medical Center, Washington, DC, USA 2Psychiatry and Behavioral Sciences and Pediatrics, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA   Definition Information processing speed represents an underlying efficiency of perception, reasoning, and problem solving. This efficiency can dampen or

underlying efficiency of perception, reasoning, and problem solving. This efficiency can dampen or enhance an individual’s innate intellectual capacities. Processing speed tasks are often included in tests of intelligence and comprise their own index (e.g., Processing Speed Index in the Wechsler scales), although impaired motor skills can impact cognitive processing in these tasks. However, independent inspection time (IT) tasks are generally considered the purest assessments of information

inspection time (IT) tasks are generally considered the purest assessments of information processing speed. IT is the amount of time a person needs to be exposed to a stimulus in order to make a simple perceptual judgment (e.g., which line is longer?). Recent research using the IT task, which is free of motor demands, reveals superior processing speed among lower functioning children with autism spectrum disorder (ASD) and intact (but not superior) processing speed among higher functioning

spectrum disorder (ASD) and intact (but not superior) processing speed among higher functioning children with ASD. Across development in typically developing individuals, IT performance is consistently correlated with general intelligence. However, IT does not appear to have the same relationship with intelligence in ASD that is seen in individuals with typical development.

Permission obtained from a patient/participant to have a specific test or procedure performed or to participate in a clinical study. Informed consent is a legal procedure to ensure that a patient/participant knows all of the risks or costs involved in treatment. The elements of informed consent include the nature of the treatment, possible alternative treatments, possible benefits of treatment, and any risks, discomforts, or limitations of confidentiality. This document must be written in

and any risks, discomforts, or limitations of confidentiality. This document must be written in language understood by the patient and must be signed and dated by the participant and at least one witness. Patients/participants also must be made aware of their privacy, safety, and freedom to withdraw, as well as any compensation for their participation. In order for informed consent to be considered legal, the patient/participant must be competent and their consent should be given voluntarily.

Initial Communication Processes Scale Trina D. Spencer Rightpath Research and Innovation Center, University of South Florida, Tampa, FL, USA Institute for Human Development, Northern Arizona University, Flagstaff, AZ, USA  Definition The Initial Communication Processes Scale is an observational assessment instrument that assesses preverbal and verbal communication of young children (0–36 months). Domains addressed by the Initial Communication Processes Scale include auditory, visual, manual

Domains addressed by the Initial Communication Processes Scale include auditory, visual, manual fine motor, oral vocal motor, object play manipulation, object play symbolic, problem solving, affective development, communication skills, and comprehension skills. It can be used to help identify the presence of autism-related communication deficits in children under 3 years old. Although developed in the early 1980s, applications of the Initial Communication Processes Scale have appeared rarely in

the early 1980s, applications of the Initial Communication Processes Scale have appeared rarely in the literature.

See Also ▶Clinical Linguistic and Auditory Milestone Scale ▶Communication Assessment ▶Communicative Development Inventories ▶Early Language Milestone Scale ▶MacArthur-Bates Communicative Development Inventories, Second Edition   Initiating behavioral requests (IBR) refers to a child’s use of eye contact, reaching, giving, or pointing to coordinate with another person to request help in obtaining an object or event. IBR is contrasted with responding to behavioral requests (RBR), which is a

an object or event. IBR is contrasted with responding to behavioral requests (RBR), which is a child’s skill in responding to gestural or verbal directions to obtain an object or event. Along with joint attention behaviors and social interaction behaviors, behavioral requests (initiating and responding) are included in the Early Social Communication Scales (ESCS). The ESCS measures nonverbal communication skills of children between 8 and 30 months of age and is used in research and practice.

skills of children between 8 and 30 months of age and is used in research and practice. Many young children with autism display deficits in initiating joint attention (IJA) but experience less significant impairments in IBR. The primary reason for this is that IBR is an instrumental form of social attention coordination, as opposed to IJA, which is used exclusively for social purposes.

Initiating/Responding to Joint Attention Skills (IJA/RJA) Kathy Lawton1 and Connie Kasari2 1Special Education and Nisonger Center, The Ohio State University, Columbus, OH, USA 2Graduate School of Education and Information Studies and the Semel Institute, University of California, Los Angeles, Los Angeles, CA, USA   As explained in the section titled “joint attention,” children with autism exhibit a core deficit in joint attention. Joint attention initiation refers to communication used to

a core deficit in joint attention. Joint attention initiation refers to communication used to share interest regarding an object, person, or event with someone else (Mundy et al. 1986). Most commonly, joint attention is initiated by young children through the nonverbal gestures of pointing, showing, giving, and coordinated looking. Responding to joint attention requires that a social partner visibly acknowledges the joint attention initiation of their communication partner. Table 1 provides

acknowledges the joint attention initiation of their communication partner. Table 1 provides definitions of specific types of initiating and responding joint attention gestures as well as a few examples of these gestures.

| General category | Specific skill | Definition | Example | |------------------|----------------|------------|---------| | Behavior regulation | Pointing | Child points to an object, person, or event that he or she wants or needs | Child points at a toy on the shelf to indicate that he or she wants to play with it |
|                  | Giving         | Child gives an object to request help | Child gives a sealed bag of candy to his or her mom to communicate that he or she wants it open |

| Initiating joint attention | Pointing | Child points at an object or event to share his or her interest | Child points at a dog to share his or her interest about the dog |
|                  | Alternating eye contact | Child alternates eye gaze between an object or event and a person to share his or her interest | Child looks back and forth between a dog and his or her mom to share interest about the dog |

|                  | Showing        | Child holds up an object to share his or her interest | Child holds up a drawing to share with his or her teacher |
| Responding to joint attention | Pointing | An adult points to something to share his or her interest. The child looks in the direction of the point | An adult points to a neat poster on the wall, and the child looks at the poster |
aThese skills were selected based upon Early Social Communication Scales Manual (Mundy et al. 2003)

Definition The initiation of communication refers to the nonprompted and purposeful (i.e., intentional) sending of a message from one conversational partner to another within the context of a communicative exchange. The form of the message may be nonverbal (consisting of some combination of eye gaze, gestures, and/or vocalizations) or verbal (consisting of single words or word combinations). In general, the individual who initiates the communication act would be considered the speaker and the

general, the individual who initiates the communication act would be considered the speaker and the individual to whom the communication act is directed would be considered the listener. The initiation of communication can serve the pragmatic function of requesting when the speaker is attempting to elicit assistance in obtaining some instrumental goal. Alternatively, the initiation of communication can serve the pragmatic function of joint attention when the speaker is attempting to direct the

can serve the pragmatic function of joint attention when the speaker is attempting to direct the attention of the listener to an object, action, or event of shared interest. In contrast to a prompted response, initiations require individuals to independently formulate and produce their own communicative behavior without the assistance or contextual support of a communication partner.

Injury may be defined as physical damage to the body caused by sudden or brief exposure to energy at levels that exceed what the body can tolerate (Peden et al. 2008). The energy that most commonly causes injury is mechanical, for example, impact with a moving or stationary object as in a road traffic crash. Other types of energy that cause injury include thermal (e.g., from a flame or hot water), chemical (e.g., from a poison), and electrical energy. Most injuries to children are

or hot water), chemical (e.g., from a poison), and electrical energy. Most injuries to children are unintentional, that is, not deliberately caused, for instance, falls, burns, and drowning. Intentional injuries resulting from acts of violence to oneself or by another person, such as assault or suicide, also occur in children, especially during adolescence (Pinheiro 2006). Injuries are a major cause of emergency treatment, hospitalization, death, and disability in children worldwide (Global

cause of emergency treatment, hospitalization, death, and disability in children worldwide (Global Burden of Disease Pediatrics Collaboration 2016). Annually, tens of millions of children are injured seriously enough to require medical attention, and more than half a million children die of their injuries.

Compared to adults, children are at greater risk for some types of injuries because their physical and cognitive abilities are still developing and they may fail to perceive or respond to danger (Schwebel and Gaines 2007). The risk of injury is strongly influenced by characteristics of the child, including age, sex, disability, and psychological and behavioral characteristics such as activity level and cognitive function (Schwebel and Gaines 2007). The environment in which the child lives also

and cognitive function (Schwebel and Gaines 2007). The environment in which the child lives also influences injury risk. This includes both the physical environment, whether natural or man-made, i.e., home, school, roads, and surrounding community, and the social environment, e.g., maternal education, caregiver supervision practices, family relationships, household income, neighborhood cohesion, peer and cultural norms, economic and health policies, and laws.

Several risk factors for injury occur at higher rates in children with autism spectrum disorder (ASD) compared to the general population, including male sex and psychological and behavioral problems such as aggressive behavior, anxiety, attention deficits, cognitive delays, hyperactivity, and sensory deficits (Lyall et al. 2017). While these characteristics could place children with ASD at higher risk for injury, research studies examining injury risk have reported conflicting findings ranging

risk for injury, research studies examining injury risk have reported conflicting findings ranging from significantly increased risk to little or no increased risk associated with ASD. The differing results likely reflect methodological variation between studies, including the populations sampled, the definitions used for injury, the data collected, the periods of risk, and the specific sociodemographic, clinical, and behavioral characteristics included as covariates in analytic models. Whether

clinical, and behavioral characteristics included as covariates in analytic models. Whether children with ASD are more likely than are other children to suffer injury has not been definitively established.

A wide range of effective strategies exists to prevent, control, and ameliorate the consequences of child injuries (Peden et al. 2008; Pinheiro 2006; Schwebel and Gaines 2007). Legislation and enforcement, such as setting and enforcing laws mandating passenger restraint use, have been shown to prevent child injuries. Product and environmental modification is another key prevention strategy, for example, isolation fencing for swimming pools and child-resistant packaging of medications and

for example, isolation fencing for swimming pools and child-resistant packaging of medications and poisons. Safety devices, including car safety seats, smoke detectors, bicycle helmets, and window guards, are effective when used correctly in reducing injury occurrence or severity. High-quality supportive home visits have short- and long-term preventive effects on injury and violence to children, including reductions in verified incidents of child abuse, use of physical punishment, family

including reductions in verified incidents of child abuse, use of physical punishment, family violence, and physician visits for unintentional injuries and poisonings. Reducing access to lethal means, such as guns, poisons, and certain medications, can decrease suicide risk among older children and adolescents. Timely and effective emergency care (e.g., caregiver training in cardiopulmonary resuscitation and prompt response times for emergency medical services), trauma care, and rehabilitation

and prompt response times for emergency medical services), trauma care, and rehabilitation services can lessen adverse outcomes of injuries, such as disability or death.

Inositol is an abundant sugar responsible for important cellular transduction pathways involving hormones, neurotransmitters, and growth factors (Parthasarathy et al.). Among the nine inositol isomers, the myo-inositol has the greatest biological activity and serves to synthesize cell membrane inositol phospholipids (Parthasarathy et al.). In the brain, myo-inositol links several extracellular signaling pathways activating phospholipase C and increasing cytosolic calcium from the endoplasmic

signaling pathways activating phospholipase C and increasing cytosolic calcium from the endoplasmic reticulum (Parthasarathy et al.). The resulting calcium surge activates many enzymes and receptors controlling essential physiological and neurological functions (Parthasarathy et al.).

As a result, the inositol pathway remains an attractive pharmacological target towards the treatment and management of many psychiatric disorders. Several clinical studies have demonstrated a correlation between decreased myo-inositol levels and the severity of several psychiatric conditions, including depression, obsessive-compulsive disorder (OCD), and bipolar disorder (Einat and Belmaker 2001; Levine 1997; Parthasarathy et al.). Furthermore, studies supplementing myo-inositol for

2001; Levine 1997; Parthasarathy et al.). Furthermore, studies supplementing myo-inositol for depression, panic disorders, and OCD patients showed improved symptom severity and management (Levine 1997). Additional pharmacological advancements using inositol synthase inhibitors, valproate and lithium, showed decreased mood fluctuations among bipolar patients (Levine 1997; Parthasarathy et al.). However, similar outcomes among autistic spectrum disorder (ASD) patients remain elusive.

A double-blind trial of myo-inositol showed no significant improvement in nine children with ASD (Levine et al. 1997). Previous scientific studies reported serotonin binding to 5-HT2, and 5-HT1c receptors activates inositol signaling, which the authors hypothesized should mimic the clinical improvements seen with SSRIs and ASD patients (Levine 1997; Parthasarathy et al.). Despite the similarities, no additional studies have investigated the therapeutic potential of myo-inositol among ASD

no additional studies have investigated the therapeutic potential of myo-inositol among ASD patients. However, a proton magnetic resonance spectroscopy (H1 MRS) analysis found myo-inositol and choline were significantly increased in the anterior cingulate and left striatum of autistic children (Vasconcelos et al. 2008). As such, myo-inositol may provide additional diagnostic and radiologic markers for ASD and other psychiatric conditions.

In addition, a genome-wide linkage analysis revealed the Inositol-3-phosphate synthase 1 (ISYNA1) gene may act as a potential autism susceptibility locus (Parthasarathy et al.). Current literature shows Inositol-3-phosphate synthase 1 modulates inositol signaling, which may alter neurological symptoms among ASD patients (Parthasarathy et al.). Therefore, further investigation is warranted to elucidate the full therapeutic and diagnostic potential of inositol among ASD patients.

The integrated play groups (IPG) model is an intervention designed to facilitate the development of meaningful peer relationships and appropriate play and social-communication skills in children with autism spectrum disorders (ASD) through adult-supported peer interactions. Play groups consist of “novice players” (those with ASD) and “expert players” (typically developing peers). A trained adult facilitator acts as a “play guide” to support and shape interactions between the novice and expert

facilitator acts as a “play guide” to support and shape interactions between the novice and expert players.

Historical Background The IPG model was developed by Dr. Pamela J. Wolfberg in an effort to create a model of intervention “that would bring together children with differing abilities, cultural identities, and social backgrounds for the purpose of play” (Wolfberg 1999, p. 6). Wolfberg received a small grant from a community educational foundation to fund an initial pilot study of the IPG program, and this research later became the subject of her master’s research (Wolfberg 1988). Then, along

and this research later became the subject of her master’s research (Wolfberg 1988). Then, along with Dr. Adriana Schuler, Wolfberg (1992) codirected a research and demonstration project to further develop and field-test the intervention model. Since then, several small-scale efficacy studies have been conducted with positive outcomes (e.g., Lantz et al. 2004; Yang et al. 2003; Zercher et al. 2001), and in 2008 Autism Speaks awarded Wolfberg a $444,420 grant to conduct a large-scale study of

and in 2008 Autism Speaks awarded Wolfberg a $444,420 grant to conduct a large-scale study of the IPG model. The traditional IPG model has recently been extended to incorporate sensory integration therapy for children who have been identified as having both social-communication and sensory integration deficits (Fuge and Berry 2004), and has paired with the Friend 2 Friend model to provide collaborative services. A final extension of the traditional IPG model is the Integrated Drama Groups (IDG)

services. A final extension of the traditional IPG model is the Integrated Drama Groups (IDG) model. This intervention was developed to support the social communication of adolescents with ASD using a developmentally appropriate model, which includes opportunities for turn taking and role playing within the context of sociodramatic play (www.autismsocialconnection.org). In 2009, Julius, Schuler, and Wolfberg received the Alexander von Humboldt Foundation Transcoop Research Award with matching

and Wolfberg received the Alexander von Humboldt Foundation Transcoop Research Award with matching funds from the Flora Foundation and the Mendelson Family Foundation to evaluate the efficacy of the IDG model (Wolfberg 2010).

Rationale or Underlying Theory The IPG model draws heavily from the social constructivist work of Lev Vygotsky, who proposed that it is through play that children acquire “symbolic capacities, interpersonal skills, and social knowledge” (Schuler and Wolfberg 2000, p. 181). Current research indicates that play does indeed serve a fundamental role in social competence, language and literacy development, creative expression, and emotional development in children (for a review, see Wolfberg

development, creative expression, and emotional development in children (for a review, see Wolfberg (1999)). Vygotsky further suggests that a child’s learning and acquisition of skills can be facilitated through scaffolding by an adult or more competent peer within the child’s zone of proximal development, which is the difference between what the child is able to do independently and what they are able to achieve with assistance (Wolfberg 2003). This provides the theoretical basis for the role

able to achieve with assistance (Wolfberg 2003). This provides the theoretical basis for the role of the adult play guide within the IPG model. Wolfberg (2003) also emphasizes that play is fundamental to a child’s sense of belonging within their peer group, as it is the most valued social activity in childhood. Play contributes to a sense of collective identity and enables children to create a world that is separate and unique from the adult world (Wolfberg and Schuler 1999). Therefore, while

that is separate and unique from the adult world (Wolfberg and Schuler 1999). Therefore, while play intervention could potentially be provided by an adult therapist alone, typical peers provide the novice player with access to “play culture” in a way that an adult is unable to (Wolfberg and Schuler 1999).

Goals and Objectives Two of the hallmark characteristics of children with ASD described by The Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition (DSM-IV) are a lack of varied, spontaneous make-believe play and a failure to develop appropriate peer relationships (American Psychiatric Association 2000). The primary objective of the IPG model is to facilitate children with ASD in developing mutually enjoyable, appropriate peer relationships, while also increasing their play

in developing mutually enjoyable, appropriate peer relationships, while also increasing their play repertoire to include symbolic play (Wolfberg 1999). Symbolic or pretend play can range from the substitution of one object for another (e.g., pretending a banana is a telephone) to engagement in complex sociodramatic play. Because children with ASD are typically inclined to fixate on certain objects or activities for extended periods of time and limit their involvement with nearby peers,

objects or activities for extended periods of time and limit their involvement with nearby peers, scaffolding and play guidance serve as important supports to guide children through more varied and complex play routines than they would seek out on their own (Wolfberg 2004). Additionally, play materials that have a high potential for sociodramatic and imaginative play are made readily available in the play environment to promote engagement in symbolic play activities (Wolfberg 2003).

Treatment Participants The IPG model was designed specifically for children with ASD and related disorders ranging from age 3 to 11 years. Wolfberg (2003) suggests that, as play never truly ends, adaptations to the IPG model might be made to support children who are either younger or older than the designated age range. Unfortunately, no efficacy studies have been conducted for ages outside of the recommended age range. It is also recommended that children already have an educational and

of the recommended age range. It is also recommended that children already have an educational and therapy plan in place before considering participation in an IPG intervention (Wolfberg 2003). This is important because the IPG model was developed as a supplement to more traditional language, social-emotional, and behavioral intervention models.

Participants may be highly verbal to functionally nonverbal and may use augmentative and alternative communication strategies. The IPG model is able to support a wide range of communicative abilities because of its fluid nature. Play groups are designed with the specific child’s needs and capabilities in mind. Therefore, a play group designed for a child with strong expressive and receptive language abilities will look very different from one that is designed for a functionally nonverbal

language abilities will look very different from one that is designed for a functionally nonverbal child. In addition, play guides and expert players are trained to look at a wide range of behaviors, beyond the obvious gestures of verbal language, as possible attempts at play initiation (Wolfberg 2003). Additionally, visual supports are an integral part of the intervention model, making this model ideal for children already using PECS or for children who simply benefit from visual supports, as

ideal for children already using PECS or for children who simply benefit from visual supports, as many individuals with ASD do. The IPG model is also designed to support children at all points on the autism spectrum, from those who have intensive forms of autism to those diagnosed with Asperger syndrome. Once again, this is due to the fluid nature of the IPG model, as play activities are tailored to fit the individual child’s interests and capabilities. However, it should be noted that the IPG

to fit the individual child’s interests and capabilities. However, it should be noted that the IPG model is not recommended for children whose behavior might be considered self-injurious or pose a threat to others despite the presence of an adult facilitator (Wolfberg 2003). Although most children with ASD would likely benefit from the addition of an IPG intervention to their current educational and therapy plan, an ideal candidate would exhibit some impairments in the skills that are necessary

therapy plan, an ideal candidate would exhibit some impairments in the skills that are necessary for successful play interactions. Some of these deficits might include atypical verbal and nonverbal attempts at social initiation, lack of eye contact, general failure to seek out peer relationships, lack of social or emotional reciprocity, inability to maintain conversation, lack of variation in play, lack of symbolic play, and difficulties taking the perspectives of others (Wolfberg 2003).

Treatment Procedures The basic setup of the IPG model involves a play group that consists of children with autism (novice players), typical peers (expert players), and an adult facilitator (play guide). The groups are generally made up of 3–5 children, with a higher ratio of expert to novice players. The expert players in the group are recruited from environments in which the novice player would typically come into contact with peers such as school, home, or the surrounding community. It is

typically come into contact with peers such as school, home, or the surrounding community. It is recommended that the play group meet twice a week for 30–60 min sessions over the course of 6–12 months in an environment where the group members would naturally play, such as a classroom, the home, or community recreation areas (Wolfberg 2003). Play areas are carefully designed to provide a sense of organization and predictability and are stocked with a variety of play materials designed to

of organization and predictability and are stocked with a variety of play materials designed to accommodate the diverse interests and abilities of group members.

Following the opening ceremony, specific strategies that the children will use during play are reviewed. These strategies are a series of verbal and nonverbal social-communication cues designed to assist both novice and expert players in interacting with one another. For example, a social-communication cue for initiating play might be to stand close, look at your playmates, point to the game, and ask, “what are you doing?” or say, “let’s play” (Wolfberg 2003, p. 190). After this review, the

and ask, “what are you doing?” or say, “let’s play” (Wolfberg 2003, p. 190). After this review, the players come up with a simple plan for getting play started. The group might come up with specific themes for play or choose what materials they would like to use. This technique is used only to get play started. As play is naturally fluid, children may change or abandon initial play ideas at any time (Wolfberg 2003).

During the session, the adult play guide facilitates interactions between players by applying four key practices: monitoring play initiations, scaffolding play, providing social-communication guidance, and providing play guidance (Wolfberg 2003). Monitoring play initiations refers to the play guide’s responsibility to recognize, interpret, and respond to a novice player’s attempts to initiate play with peers. If the player’s attempts at initiation are unconventional, the play guide will

play with peers. If the player’s attempts at initiation are unconventional, the play guide will interpret them for other players and assist the child in learning new, more appropriate means of initiation. Throughout the session, the play guide provides varying amounts of support to players by scaffolding play interactions. This requires that the play guide anticipate times at which players might need support to keep a play interaction going, but also to be intuitive of when little to no support

support to keep a play interaction going, but also to be intuitive of when little to no support is necessary. Ways in which the play guide may scaffold interactions include providing explicit direction or modeling play behaviors, offering suggestions or commenting on play, or simply standing nearby the group. In addition to scaffolding play, the play guide facilitates play interactions by providing social-communication and play guidance. In providing social-communication guidance, the play

social-communication and play guidance. In providing social-communication guidance, the play guide supports interactions by cueing players to use verbal and nonverbal strategies that facilitate players’ ability to initiate, respond to, join, or maintain play activities (Wolfberg 2003). Social-communication cues provide players with suggestions of what they might do or say during play interactions. For example, in order to initiate play, a child might be cued to tap their peer on the shoulder

For example, in order to initiate play, a child might be cued to tap their peer on the shoulder and say “let’s play” (Wolfberg 2003). Ultimately, the goal is for children to incorporate these strategies into their interactions without assistance from the play guide. Play guidance refers to a hierarchy of techniques designed to involve the novice player in interactions at a level that is just outside of their current skill set (Wolfberg 2003). Types of play guidance range from orienting, in

outside of their current skill set (Wolfberg 2003). Types of play guidance range from orienting, in which the novice player is prompted to observe other players, to role playing, in which novice and expert players engage in elaborate pretend play scenarios. In using this series of supports, the goal is that the children will gradually learn how to play together with decreasing amounts of adult support.

Efficacy Information Several studies evaluating the efficacy of the IPG model describe positive outcomes for children with ASD, including increased social interaction and reciprocal play with peers, increased in the complexity of play (e.g., functional and symbolic play), and decreased in stereotyped and isolated play (Lantz et al. 2004; Richard and Goupil 2005; Wolfberg 1988; Wolfberg and Schuler 1993; Yang et al. 2003; Zercher et al. 2001). Additionally, Wolfberg and Schuler (Wolfberg and

1993; Yang et al. 2003; Zercher et al. 2001). Additionally, Wolfberg and Schuler (Wolfberg and Schuler 1993) noted significant gains in language for two out of three participants with ASD, including an increase in the variety of linguistic forms and communicative functions of utterances. Similarly, Zercher et al. (2001) found that all three participants with ASD demonstrated an increase in the number of verbal utterances over the course of treatment. Studies also indicate that skills observed

of verbal utterances over the course of treatment. Studies also indicate that skills observed during intervention were maintained when adult support was withdrawn (Lantz et al. 2004; Richard and Goupil 2005; Wolfberg and Schuler 1993; Yang et al. 2003; Zercher et al. 2001).

Wolfberg and Schuler (1992) conducted a large-scale study investigating teachers’ and speech-language pathologists’ (SLP) qualitative perceptions of the impact of participation in an IPG on novice players (N = 38). Teachers and SLPs reported increases in social reciprocity between novice and expert players and indicated that the IPG provided more opportunities for relationship development than participation in an inclusive setting alone provided. They also indicated that children interacted

participation in an inclusive setting alone provided. They also indicated that children interacted more naturally in the IPG setting than in other inclusive settings and described the play groups as a “safe haven” for children to play without added outside pressure. Preliminary evidence exists to support the generalization of skills to settings outside the play group. For example, in a single-subject study Lantz et al. (2004) reported that increases in socially oriented play behavior (e.g.,

study Lantz et al. (2004) reported that increases in socially oriented play behavior (e.g., turn taking, sharing, offering or accepting assistance) and common focus play (play characterized by joint attention and social reciprocity) observed during play group were generalized to the classroom. Wolfberg and Schuler (1993) provide qualitative evidence for generalization gained through semi-structured parent and teacher interviews. Results of these interviews indicate that participants with ASD

parent and teacher interviews. Results of these interviews indicate that participants with ASD generalized skills gained during intervention to the classroom and home setting.

A major limitation of the aforementioned studies is the small number of participants. Studies providing quantitative measures have ranged from between one and four novice participants. The limited number of participants in these studies limits the generalizability of results. Despite this, evidence to support the utility of the IPG model is promising.

Outcome Measurement The IPG manual (Wolfberg 2003) includes a series of assessments that are intended to be used throughout the course of intervention:

* Play Questionnaire – Completed by individuals who observe the child’s play behaviors on a regular basis (e.g., parents, therapists, teachers) prior to and at the end of intervention. This questionnaire provides information regarding the play experience, preferences, and style of the novice player, along with information regarding their play patterns within a developmental framework. A comparison of pre- and postintervention questionnaires can provide information regarding the child’s

of pre- and postintervention questionnaires can provide information regarding the child’s progress.

* Play Preference Inventory – Completed by the play guide prior to the beginning of intervention and periodically over the course of intervention. This inventory is used to record the play preferences of the novice (what they spontaneously choose to do during free play) and how these preferences might connect with the interests of novices players. For example, the play guide might connect a novice player’s interest in hair to expert players interests by coming up with an activity where the

player’s interest in hair to expert players interests by coming up with an activity where the group pretends they are hairdressers (Wolfberg 2003). A list of ways the novice player’s preference can be connected to those of the expert players may be generated during a brainstorming session involving all group members. This inventory assists the play guide in planning activities that will be engaging and enjoyable for all group members and also provides information regarding the novice player’s

and enjoyable for all group members and also provides information regarding the novice player’s diversity of play, which is later recorded in the Profile of Individual Play Development.

* Integrated Play Groups Observation – Completed on a weekly basis by the play guide during the first month of intervention and approximately every other week thereafter. This assessment tool provides the play guide with a structured way to complete naturalistic observations of the novice player over the course of intervention.

* Profile of Individual Play Development – Completed by the play guide once a month during intervention. This assessment combines information gathered in the aforementioned assessments to provide a complete profile of the novice player for progress-tracking purposes.

* Record of Monthly Progress in IPG – Completed by the play guide on a monthly basis during intervention. This assessment tool is used to chart the novice player’s progress in regard to a specific set of individualized goals determined prior to the start of intervention.

Qualifications of Treatment Providers Training is required to implement an IPG and become a play guide. Individuals who complete this training are typically those who have some experience caring for or working with children with ASD (Wolfberg 2003). To apply IPG principles in an inclusive setting, you must attend a 2-day introductory and intermediate-level training course. The first day of training provides a basic overview of the theory and methods applied during intervention, while the

training provides a basic overview of the theory and methods applied during intervention, while the second day concentrates on designing an IPG model for specific children and developing a plan for implementation (Wolfberg 2010). To be qualified to implement the IPG model as a program or service and be qualified as a “master play guide,” completion of an apprenticeship program is required. Supervision during the apprenticeship program may be direct or long distance (involving telephone and

during the apprenticeship program may be direct or long distance (involving telephone and email conferencing along with exchange of videotapes) depending on the location of the individual (Wolfberg 2010). Certification from the Autism Institute on Peer Relations and Play is provided upon successful completion of this portion of the training.

Definition Integration in special education refers to the practice of including children with disabilities with their nondisabled peers in the educational setting. Prior to the enactment of IDEA (Individuals with Disabilities Education Improvement Act) in 1975 (then known as The Education for All handicapped Children Act, P. L.94–142), many children with disabilities were segregated from their peers in the educational setting and taught in separate classrooms, separate programs, separate

peers in the educational setting and taught in separate classrooms, separate programs, separate schools, or left at home. IDEA not only mandates a free and appropriate education (FAPE) for all children with disabilities but also includes a mandate, that to the maximum extent appropriate, students with disabilities should be educated with their non-disabled peers (20 U.S.C.1415[5][B]) in what is referred to as the least restrictive environment (LRE) . Philosophically, the integration of students

to as the least restrictive environment (LRE) . Philosophically, the integration of students with disabilities reflects the effort of educators to create a sense of belonging and acceptance for all students. Educationally, the integration of students with disabilities into the regular education environment reflects the community setting the student will be expected to function in when they leave school. Many professionals continue to disagree regarding the educational benefits of an integrated

school. Many professionals continue to disagree regarding the educational benefits of an integrated setting for every student with a disability. The student with special needs right to be integrated in the educational environment with students who do not have special needs (least restrictive environment) must be balanced with the student’s right to an educational environment that is appropriate in meeting his instructional needs.

Synonyms Cognitive delay; Developmental delay; Developmental disability (Ontario), Mental retardation (former term); Intellectual developmental disorder; Intellectual impairment; Learning disability (United Kingdom)

Short Description or Definition The definition of intellectual disability (ID) is based on three criteria: (1) significant limitations in intellectual functioning; (2) significant limitations in adaptive behavior as expressed by conceptual, social, and practical adaptive skills; and (3) age of onset before age 18 years (Schalock et al. 2010a). It is estimated that, among people with autism spectrum disorder (ASD), the occurrence of ID ranges from 25% to 42% (Maenner 2020). Estimates vary due

disorder (ASD), the occurrence of ID ranges from 25% to 42% (Maenner 2020). Estimates vary due to a number of methodological factors, including the design of the studies, the definitions of ASD and ID, and the ascertainment methods used (LaMalfa et al. 2004; Lecavalier et al. 2011; Matson and Shoemaker 2009; Maenner 2020). ASD is the second most common co-occurring mental disorder in individuals with ID after attention-deficit/hyperactive disorder (AD/HD) (Centers for Disease Control 2010). The

ID after attention-deficit/hyperactive disorder (AD/HD) (Centers for Disease Control 2010). The diagnosis of ID may be complicated by social communication and behavior deficits inherent to ASD, which may interfere with understanding of and cooperating with assessment procedures.

The authoritative definition of ID is established by the American Association on Intellectual and Developmental Disabilities (AAIDD) Terminology and Classification Committee (Schalock et al. 2010b). A comprehensive psychological assessment is needed to determine whether or not an individual has ID and to tailor a support plan to his or her needs. At a minimum, the assessment must include measures of intellectual functioning and adaptive behavior as well as a history of developmental concerns.

of intellectual functioning and adaptive behavior as well as a history of developmental concerns. Since a diagnosis of ID requires that limitations in intellectual and adaptive functioning have an early onset, specifically before age 18, it is differentiated from other disorders characterized by intellectual and adaptive functioning problems, such dementia or traumatic brain injury.

Intellectual functioning refers to general mental capacity, which includes the ability to reason, plan, think, and communicate. Intellectual functioning is assessed with a standardized intelligence test, or IQ test. Significant limitations in intellectual functioning are generally considered at or around two standard deviations below the mean of an IQ test. Adaptive behavior is comprised of three skill types:

* Conceptual skills: language and literacy; money, time, and number concepts; and self-direction
* Social skills: interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem-solving, and the ability to follow rules/obey laws and to avoid being victimized
* Practical skills: activities of daily living (personal care), occupational skills, health care, travel/transportation, schedules/routines, and use of the telephone

The following five assumptions are essential in applying the definition of ID and in designing appropriate supports for individuals affected by intellectual disability:
Assumption 1: Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture.
Assumption 2: Valid assessment considers cultural and linguistic diversity, as well as differences in communication, sensory, motor, and behavioral factors.

Assumption 3: Within an individual, limitations often coexist with strengths. Assumption 4: An important purpose of describing limitations is to develop a profile of needed supports.

Assumption 5: With appropriate personalized supports over a sustained period, the life functioning of the person with ID generally will improve. It is imperative that appropriate supports are identified and provided in order to enhance the individual’s functioning, specifically within the areas of development, education, interests, and personal well-being (Schalock et al. 2010a).

Categorization Adaptive behavior refers to appropriate maturation, learning, and social behaviors required for an individual to function independently and appropriately within one’s cultural and age group. For a diagnosis of ID, significant deficits in adaptive behavior are required on a standardized measure normed on the general population, including people with and without disabilities. On these standardized measures, significant limitations in adaptive behavior is approximately two standard

standardized measures, significant limitations in adaptive behavior is approximately two standard deviations below the mean of either (1) one of the following three types of adaptive behavior: conceptual, social, or practical or (2) an overall score on a standardized measure of conceptual, social, and practical skills. Standardized measures of adaptive functioning are typically informed by parent or caregiver report or, on occasion, self-report. Examples of widely used measures of adaptive

or caregiver report or, on occasion, self-report. Examples of widely used measures of adaptive behavior include the Vineland Adaptive Behavior Scales (Sparrow et al. 2016), Adaptive Behavior Assessment System (Oakland and Harrison 2015), and the Behavior Assessment System for Children (Kamphaus and Reynolds 2015).

In addition to this criteria, significant deficits in intelligence must be established (at least two standard deviations below the mean) through individually administered, standardized measure of general intelligence. Examples of standardized IQ tests include the Stanford-Binet Intelligence Scales (Roid 2005), Wechsler Intelligence Scale for Children (Wechsler 1991), and Differential Abilities Scales (Elliot 2007). Clinical judgment and expertise are required in the interpretation of

Scales (Elliot 2007). Clinical judgment and expertise are required in the interpretation of information regarding the assessment of adaptive behavior and intellectual functioning and in the formulation of valid diagnoses. In addition to AAIDD, other widely used classification systems include the International Classification of Diseases-11 (World Health Organization 2018) and the Diagnostic and Statistical Manual, 5th Edition (DSM-5; American Psychiatric Association [APA] 2013). These

and Statistical Manual, 5th Edition (DSM-5; American Psychiatric Association [APA] 2013). These classification systems each define ID using IQ, adaptive behavior, and age of onset criteria. In addition, the DSM-5 provides four severity subcategories based on adaptive functioning: mild, moderate, severe, and profound. Both ID and ASD are included under the “neurodevelopmental disorders” category in the DSM-5 along with communication disorders, AD/HD, specific learning disorder, and motor

in the DSM-5 along with communication disorders, AD/HD, specific learning disorder, and motor disorder. The overarching theme of neurodevelopmental disorders is that they originate in early childhood. There is evidence that the clinical presentation of individuals with ASD varies according to the level of adaptive functioning or IQ. Level of functioning is negatively correlated with ASD core symptom domains (Buitelaar et al. 1999; Matson and Shoemaker 2009; Munson et al. 2008). In fact, it has

domains (Buitelaar et al. 1999; Matson and Shoemaker 2009; Munson et al. 2008). In fact, it has been suggested that IQ may be the best predictor of functioning in ASD (Witwer and Lecavalier 2008).

Epidemiology A meta-analysis of prevalence studies published internationally between 1980 and 2009 found a combined prevalence of ID in the general population to be 10.37 out of every 1000 births (Maulik et al. 2011). The estimated prevalence of ASD in the general population is 62 out of every 10,000 births (Elsabbagh et al. 2012). The determination of an ASD diagnosis may be complicated by genetic conditions that are associated with ID, social deficits, and restricted interests (e.g.,

by genetic conditions that are associated with ID, social deficits, and restricted interests (e.g., Angelman syndrome, Prader-Willi syndrome, fragile X syndrome, Cornelia de Lange syndrome). Individuals with these syndromes may meet criteria for ID and ASD; approximately 12–15% of people with ASD have one of these genetic conditions (Muhle et al. 2004). Genetic testing is needed to diagnose the genetic condition; distinguishing between symptoms of these syndromes and ASD presents additional

genetic condition; distinguishing between symptoms of these syndromes and ASD presents additional challenges for clinicians, and in some cases, a child will meet diagnostic criteria for ASD, ID, and a genetic syndrome.

Approximately 75–90% of individuals with ID function with mild impairments, and far fewer ( 5%) are impacted to a severe or profound degree. Certain genetic syndromes are associated with severe or profound ID (e.g., Rett syndrome), while other genetic conditions, such as Down syndrome, may be associated with a wide range of intellectual functioning, although usually in the ID range (Jacobson et al. 2008). Males are more likely than females to be diagnosed with both mild (average male/female

al. 2008). Males are more likely than females to be diagnosed with both mild (average male/female ratio 1.6:1) and severe (average male/female ratio 1.2:1) forms ID. However, sex ratios vary widely across studies (APA 2013).

Natural History, Prognostic Factors, and Outcomes Etiology. The etiology of ID is composed of four categories of risk factors (biomedical, social, behavior, and educational) that interact across time, specifically across the life span of the individual and across generations from parent to child. This multifactorial, epigenetic construct replaces prior approaches that divided etiology of ID into two broad types: ID of biological origin and ID due to psychosocial disadvantage. Indeed,

ID into two broad types: ID of biological origin and ID due to psychosocial disadvantage. Indeed, biomedical risk factors may be present in persons with ID of cultural-familial origin, and social, behavioral, and educational risk factors may be present in persons with ID that can be attributed to biomedical etiology. It is now estimated that up to 40% of ID are the result of a genetic aberration (Kaufman et al. 2010), though the percentage increases proportionally with severity of ID (McLaren

(Kaufman et al. 2010), though the percentage increases proportionally with severity of ID (McLaren and Bryson 1987). The recommended first-line tests of genetic causes are a chromosomal microarray and fragile X testing (Moeschler et al. 2014).

The increased prevalence of ID in males is largely associated with genetic factors; approximately 40 genes are known to cause ID, and approximately 80% of these reside on the X chromosome. Since males have only one X chromosome, they are less able to compensate for aberrations on the X chromosome associated with these genes than females (Kaufman et al. 2010). This same relationship accounts for the higher prevalence for ASD in males than females (Skuse 2000). According to Harris (1995) and

the higher prevalence for ASD in males than females (Skuse 2000). According to Harris (1995) and Moser (2004), who studied the prevalence of specific genetic causes of ID in a population of 1,000 births, the 3 most common genetic conditions associated with ID are Down syndrome (1.7), fragile X syndrome (0.5 males, 0.2 females), and Duchenne muscular dystrophy (0.5–1.0). Each of these conditions is characterized by a wide range of physiological and psychological symptoms that manifest themselves

characterized by a wide range of physiological and psychological symptoms that manifest themselves within the individual to a varying degree. As such, it is important to note that, although these syndromes are among the leading causes of ID, not all people with these conditions have ID.

ID etiology is based on the interaction of four categories of risk factors across the life span and generations: biomedical, social, behavioral, and educational. The timing of ID etiology is divided into three critical periods: prenatal, perinatal, and postnatal. Table 1 presents these risk factors by category and time period.

| Timing    | Biomedical                                                                 | Social                                                                                                        | Behavioral                                            | Educational                                              |

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

| Prenatal  | Chromosomal disorders Single-gene disorders Syndromes Metabolic disorders Cerebral dysgenesis Maternal illnesses Parental age | Poverty Maternal malnutrition Domestic violence Lack of access to prenatal care                               | Parental drug use Parental alcohol use Parental smoking Parental immaturity | Parental cognitive disability without supports Lack of preparation for parenthood |

| Perinatal | Prematurity Birth injury Neonatal disorders                              | Lack of access to prenatal care Parental rejection of caretaking Parental abandonment of child              |                                                       | Lack of medical referral for intervention services at discharge |

| Postnatal | Traumatic brain injury Malnutrition Meningoencephalitis Seizure disorders Degenerative disorders                           | Impaired child-caregiver interaction Lack of adequate stimulation Family poverty Chronic illness in the family Institutionalization Child abuse and neglect Domestic violence Social deprivation | Inadequate safety measures Difficult child behaviors Impaired parenting | Delayed diagnosis Inadequate early intervention services Inadequate special education

parenting | Delayed diagnosis Inadequate early intervention services Inadequate special education services Inadequate family support |

Source: Reprinted from (Schalock et al. 2010b, pp. 65–66). Reprinted with permission

Prognostic Factors Health and Health Care. There is a high risk of health problems among people with co-occurring ASD. Examples include epilepsy, cerebral palsy, hearing and vision impairments, speech-language disorders, and behavioral health problems (Nickel 2000). The prevalence of physical health problems and poor physical health is higher in people with ID compared to people without disabilities (Havercamp and Scott 2015; Young-Southward et al. 2017). Individuals with ID are also

disabilities (Havercamp and Scott 2015; Young-Southward et al. 2017). Individuals with ID are also susceptible to the primary risk factors of chronic diseases including obesity, decreased physical activity, and smoking. Overall physical health decreases as people with ID age from child to adulthood, and females have been shown to have poorer health than males (Young-Southward et al. 2017). As in the general population, the risk of disease among those with ID increases with age. A study that

in the general population, the risk of disease among those with ID increases with age. A study that used a random sample of adults living in the community found that, compared to adults without disabilities, adults with ID were significantly more likely to report being in fair or poor health, more likely to lead sedentary lifestyles, and seven times more likely to report inadequate emotional support. Similar rates of tobacco use and overweight/obesity were reported. Adults with ID had a similar

Similar rates of tobacco use and overweight/obesity were reported. Adults with ID had a similar or greater risk of having four of five chronic health conditions compared with peers without disabilities (Havercamp et al. 2004). In addition to these aforementioned health issues, certain etiological conditions are associated with specific health concerns; for example, Alzheimer’s disease is especially common in people with Down syndrome (Wisniewski et al. 1985).

People with ASD and ID are at increased risk of exhibiting mental and behavioral health problems, which render many at an increased risk of being prescribed more than one medication to address physiological, psychological, and behavioral concerns (Bowring et al. 2017; Sheehan et al. 2015). Individuals with ID are vulnerable to the same adverse effects of medication use as the general population, but these effects may go unrecognized or ignored because the person’s functional limitation may

but these effects may go unrecognized or ignored because the person’s functional limitation may mask or distort the signs, the person’s may be unable to alert caregivers to the symptoms, and because drug-induced movement disorders may be difficult to discern from preexisting stereotypical movement disorders or symptoms of psychiatric disorders or medical problems (Wilson et al. 2004). It is crucial that caregivers are aware of the possible side effects and are equipped with guidelines for

crucial that caregivers are aware of the possible side effects and are equipped with guidelines for monitoring these effects.

Compared to people without disabilities, people with ID face significant disparities in health care and supports. Several factors contribute to these disparities including limited communication skills, the extra time and skill required to provide quality health care to patients with ID, and the fact that providing care to patients with disabilities is scarcely addressed in medical and other professional school curricula (Iezzoni and O’Day 2006; Kirschner and Curry 2009). A survey commissioned

school curricula (Iezzoni and O’Day 2006; Kirschner and Curry 2009). A survey commissioned by Special Olympics found that only 25% of medical schools include content regarding persons with neurodevelopmental disorders in their curricula (Corbin et al. 2005). The US Surgeon General released two reports drawing attention to the importance of training health professionals to provide care for people with ID (U.S. Public Health Service 2002), noting evidence that disability confers worse health

with ID (U.S. Public Health Service 2002), noting evidence that disability confers worse health status and that resources are inadequate to maintain health, prevent secondary health conditions, and optimize wellness (U.S. Department of Health and Human Services 2005).

Mental Health. Individuals with ID are two to four times more likely to experience comorbid mental illness than the general population, with an estimated 30–40% of people with ID suffering from a psychiatric disorder (Cooper et al. 2007; Einfeld et al. 2011). As with physical health concerns, mental illness can be hard to recognize and diagnose, especially in individuals with limited verbal ability, as the identification of many psychiatric symptoms requires the patient to introspect and

ability, as the identification of many psychiatric symptoms requires the patient to introspect and self-report internal states. Symptoms of mental health problems are often mistaken for symptoms of ID; this error is referred to as “diagnostic overshadowing.” Furthermore, discomfort from chronic disorders (e.g., constipation), fluctuating pain (e.g., toothaches), or side effects of medication may present to caregivers and clinicians as disruptive or irritable behaviors (Bradley et al. 2007).

present to caregivers and clinicians as disruptive or irritable behaviors (Bradley et al. 2007). Recognizing the difficulty in correctly diagnosing mental health problems in people with ID, the National Association for the Dually Diagnosed (NADD) created the Diagnostic Manual – Intellectual Disability (DMID-2; Fletcher et al. 2016), which was designed to accompany DSM-5. The DMID-2 was developed to facilitate an accurate psychiatric diagnosis in persons who have ID and to provide a thorough

to facilitate an accurate psychiatric diagnosis in persons who have ID and to provide a thorough discussion of the issues involved in reaching an accurate diagnosis. Mental health problems in people with ID are associated with poorer outcomes in major life areas including employment, independent living, quality of life, and health.

Behavioral Health. The presence of ASD and ID have been shown to independently increase the likelihood of engaging in behavioral and emotional problems in children (Totsika et al. 2011), and rates of problem behavior are highest in those with both ASD and ID (McCarthy et al. 2010). Examples of common problem behaviors include aggression, self-injury, disruption, inappropriate sexual behavior, and elopement. The presence of ID can increase risk for developing problem behavior due to the

and elopement. The presence of ID can increase risk for developing problem behavior due to the person’s impaired ability to communicate wants and needs or to cope with stressors. Problem behaviors can increase a person’s risk of negative outcomes as they can reduce the person’s access to the community, in particular educational, social, health care, and familial supports.

Outcomes People with ID are living longer, with life expectancy approaching that of the general population. Because supports for adults with ID are primarily provided by their families of origin, the aging of people with ID becomes a problem for the family and the community. As the parents of adults with ID age, their ability to support their child with the complex care needs associated with having ID and ASD is reduced, particularly if the adult has comorbid physical, mental, or behavioral

ID and ASD is reduced, particularly if the adult has comorbid physical, mental, or behavioral health needs. This forces families to consider residential placements for their child more frequently than parents were required to in previous generations.

Residential and other support services should be provided in the least restrictive environment, that is, a strong preference is given to inclusive settings with peers who do not have disabilities because of the educational and social benefits associated with learning from and interacting with these peers. As part of the US Individuals with Disabilities Education Act (IDEA ca. 1975), the least restrictive environment was identified as one of the principles governing the education of students

restrictive environment was identified as one of the principles governing the education of students with disabilities and other special needs. By law, schools are required to provide a free public education in the least restrictive environment that is appropriate to the individual student’s needs. The IDEA is in concert with the movement toward inclusion for people with ID that began with deinstitutionalization in the 1970s and continues today. The least restrictive environment principle guides

in the 1970s and continues today. The least restrictive environment principle guides the provision of residential, vocational, and other community services for adults as well as children with ID and other disabilities.

Positive outcomes in terms of health, mental health, and quality of life are associated with self-determination and the availability of social and other supports that meet the individual needs of the person.

Clinical Expression and Pathophysiology ID is not a disease, a syndrome, or a designation that encompasses a group of medical disorders. It is instead a construct embedded within the broader construct of disability and descriptions of human functioning. Because of the varied nature and complex interrelated causal processes contributing to ID, it is not possible to succinctly summarize the clinical expression or pathophysiology of the condition. (Please see preceding section “Natural History,

expression or pathophysiology of the condition. (Please see preceding section “Natural History, Prognostic Factors, and Outcomes,” for more information.)

Evaluation and Differential Diagnosis Assessment of ID involves systematically collecting information for decision-making and communication related to three assessment functions: diagnosis, classification, and planning individual supports. Within each of these functions, professionals conduct assessments for a variety of specific purposes. For example, a diagnosis might determine an individual’s eligibility for services or legal protection, or it might establish whether a person could be

eligibility for services or legal protection, or it might establish whether a person could be included in a research sample. In order to achieve specific assessment purposes, three criteria must be met: (1) the assessment tools and process should match the purpose for assessment, (2) the assessment findings should be as valid as possible, and (3) the results should be both useful and purposefully applied. Clinical judgment is essential to enhance the quality, validity, and precision of the

applied. Clinical judgment is essential to enhance the quality, validity, and precision of the clinician’s decision and recommendations. Clinical judgment is defined as a special type of judgment rooted in a high level of clinical expertise and experience, and that emerges directly from extensive training, experience with the person, and extensive data (Schalock et al. 2010b). A higher level of clinical judgment is frequently required when the complexity of the person’s functioning or

of clinical judgment is frequently required when the complexity of the person’s functioning or co-occurring disorders precludes standardized assessment.

A diagnosis of ID is made when three criteria are met: (1) significant limitation in intellectual functioning, (2) significant limitation in adaptive behavior, and (3) the onset of limitations occurs before age 18. The terminology of ID has changed frequently (see ▶Mental Retardation entry), yet for the past 50 years, the definition has remained fairly consistent. The American Association on Intellectual and Developmental Disabilities (2010) defines a significant limitation in intellectual

Intellectual and Developmental Disabilities (2010) defines a significant limitation in intellectual functioning as two standard deviations below the population mean IQ score, equating to a cutoff of 70 or below (plus or minus standard error of measurement). Limitations in adaptive behavior are to be assessed using a standardized measure that has been normed on the general population. Significant limitation is defined as two standard deviations below the mean in the realms of one or more areas

limitation is defined as two standard deviations below the mean in the realms of one or more areas of adaptive functioning, conceptual (language, reading, writing, understanding of time and number concepts), social (relating to others, self-esteem, social problem-solving, naïveté, and rule following), or practical (self-care, vocational skills, health care, safety behaviors, use of transportation, technology, and money), or can be determined based on an overall score from all three of these

technology, and money), or can be determined based on an overall score from all three of these domains. The use of an age criterion distinguishes ID from cognitive impairments that occur at later points in life, such as those associated with traumatic brain injury, mental illness, or dementia. Once a diagnosis of ID is made or suspected, it may be helpful to explore the etiology, as certain genetic conditions have important implications for the health of the individual and for the risk of

genetic conditions have important implications for the health of the individual and for the risk of transmitting an inherited disorder.

Individuals with ID require accommodations to participate in assessments, including psychiatric assessment. Hurley et al. (2003) recommend the following adjustments to a clinical interview: (1) the use of simple vocabulary when interviewing the individual, (2) short, easy to understand sentences, (3) one question at a time, (4) waiting for the individual’s answer before the next question is asked, and (5) the assurance that the individual has complete understanding of the question that is

asked, and (5) the assurance that the individual has complete understanding of the question that is being asked. The examiner must be explicit when clarifying questions due to a more concrete style of reasoning that is commonly displayed by individuals with ID and ASD. Close-ended (requiring only yes/no answers) or leading questions should also be avoided as they are associated with biased responding. Family members and direct support professionals should also be interviewed for additional

Family members and direct support professionals should also be interviewed for additional information on the individual’s symptoms, especially chronology of symptom onset, in what environments the problem is observed, and why evaluation is being requested.

Treatment There is no known cure for ID; however, intervention should be considered at three levels: primary prevention, with the goal of preventing the condition before its biological onset through appropriate prenatal and early childhood care; secondary prevention, which involves early identification and intervention when early signs of ID are identified but before a formal diagnosis is made; and tertiary prevention, the prevention of symptom exacerbation once a diagnosis is made. In the

and tertiary prevention, the prevention of symptom exacerbation once a diagnosis is made. In the case of ID or developmental delay, tertiary prevention includes early intervention, special education, and finding effective accommodations to help the individual maximize functioning and community participation. This medical model of prevention is more traditionally applied to diseases and physical conditions, yet it offers a helpful context for the various interventions and supports available to

conditions, yet it offers a helpful context for the various interventions and supports available to people with ID.

Primary Prevention. The goal of primary prevention is to maximize the health of the mother and baby, preventing diseases and conditions, including ID, before their biological onset. Strategies include promoting maternal fitness and healthy nutrition, which can include taking prenatal vitamins with folic acid to promote healthy neural tube development. During pregnancy, women are encouraged to avoid drinking alcohol, using illegal substances, and taking many prescription medications due to the

drinking alcohol, using illegal substances, and taking many prescription medications due to the known teratogenic effects on the fetus. Avoidance of drug and alcohol use is especially important, as prenatal exposure to alcohol has been identified as the leading known preventable cause of ID (CDC 2015). After the child is born, primary prevention initiatives include childhood vaccinations against diseases that pose high risks for the baby’s life and healthy development. Childhood diseases such

diseases that pose high risks for the baby’s life and healthy development. Childhood diseases such as Haemophilus influenzae type b (Hib), measles, mumps, and rubella can cause brain inflammation, brain damage, and death in young children. The safety of childhood vaccinations has been questioned, and an association was claimed between autistic symptoms and vaccines in a study that was later shown to be a deliberate fraud (Wakefield et al. 1998). The Centers for Disease Control and Prevention

to be a deliberate fraud (Wakefield et al. 1998). The Centers for Disease Control and Prevention established a research agenda to investigate safety concerns, which provided overwhelming evidence of the safety of vaccines for infants and young children. This research definitively established that vaccines are not associated with ASD (CDC 2009; see Interagency Autism Coordinating Committee, National Vaccine Advisory Committee). Unfortunately, the now-discredited Wakefield study panicked many

Vaccine Advisory Committee). Unfortunately, the now-discredited Wakefield study panicked many parents and led to a sharp drop in the number of children receiving the vaccine that prevents measles, mumps, and rubella. Measles cases have increased dramatically in the ensuing years. Primary prevention efforts to protect children continue throughout childhood and include environmental health initiatives, such as removing lead from paint and gasoline, and public safety initiatives, such as mandating

such as removing lead from paint and gasoline, and public safety initiatives, such as mandating car seats and bicycle helmets to prevent traumatic head injury.

Secondary Prevention. Secondary prevention consists of the identification and interdiction of diseases that are present in the body but that have not progressed to the point of causing signs, symptoms, and dysfunction. Once an individual has been diagnosed with a disease, the emphasis turns to prevent the emergence of symptoms associated with the condition. For example, phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down the amino acid

a rare condition in which a baby is born without the ability to properly break down the amino acid phenylalanine. Untreated, PKU is associated with delayed mental and social development, hyperactivity, seizures, and severe intellectual disability. These impairments can be completely avoided when a special diet that is extremely low in phenylalanine is followed. Most states require a PKU screening for all newborns so that treatment can begin immediately.

Tertiary Prevention. Tertiary prevention consists of the preventing disease progression, rehabilitation, and reducing the sequelae of the condition. Services are provided to reduce the number, extent, and severity of direct or indirect side effects associated with the identified condition. For example, early intervention will enhance the development of young children already exhibiting developmental delays (of known or unknown etiology) both by altering their developmental trajectories and by

delays (of known or unknown etiology) both by altering their developmental trajectories and by preventing secondary complications from occurring. For children at risk of ID because of a variety of biological and/or environmental conditions, it is expected that these delays can be prevented entirely or their magnitude minimized through early intervention services (Guralnick 2005). Common services that are funded by federal and state entities include specialized preschool services, special

that are funded by federal and state entities include specialized preschool services, special education programs throughout elementary, middle, and high school, and, for young adults, programs to assist in the transition from a high school to a vocational setting. For children with ID who have specific behavioral health concerns, parent training and behavior support services are commonly recommended and used. Individual and group psychotherapy can be helpful in treating behavioral health

and used. Individual and group psychotherapy can be helpful in treating behavioral health conditions in children and adults with ID (NICE 2017; Schalock et al. 2010a). Peer support groups are organized for adults with ID to provide and receive social and emotional support, as well as skill building. Adults with ID benefit from job training and case management services to improve employment and community living outcomes. Numerous advocacy groups have also been organized across the United States

living outcomes. Numerous advocacy groups have also been organized across the United States and other countries to promote equal rights and opportunities for all individuals with ID (United Nations 2006). For adults with ID and ASD, individual service plans are centered on the individual’s interests and goals and focused on providing supports and services to promote overall well-being. Plans are intended to adopt a dynamic, life span approach, with the emphasis on continuous revision of goals

intended to adopt a dynamic, life span approach, with the emphasis on continuous revision of goals to meet the individual as he or she progresses through life. Treatment plans strive to address multiple aspects of life, including self-care skills, social skills, education, and physical, mental, and behavioral health. Self-determination skills are commonly addressed in treatment plans including self-awareness, self-advocacy, self-efficacy, decision-making, independent performance,

including self-awareness, self-advocacy, self-efficacy, decision-making, independent performance, self-evaluation, and adjustment that contribute to an individual’s ability to establish and achieve his or her own goals.

This term has been used to characterize aspects of the ways in which more able individuals on the autism spectrum, particularly those with Asperger’s disorder, cope with their difficulties in empathy and perception of the feelings of others. Asperger (1944) emphasized this as one aspect of the clinical presentation of the latter condition, and subsequent investigators (e.g., Klin et al. 2005) have also underscored this unique approach to understanding other people’s feelings. The concept

have also underscored this unique approach to understanding other people’s feelings. The concept represents an extension of the more general notion of intellectualization as a defense mechanism, that is, for the more typical population the approach to thinking about troubling situations or anxiety-laden issues may help provide some distance from the experience of unpleasant affects. Although prefigured, as a more general concept, by Sigmund Freud, it was his daughter Anna who elaborated the

as a more general concept, by Sigmund Freud, it was his daughter Anna who elaborated the more specific concept and noted its developmental correlates. Individuals with Asperger’s engage in various approaches to coping with the problem of understanding other people’s feelings and intentions. In their often somewhat professorial style, they may try to “decode” the feelings of others by approaching the problem in a highly intellectual, as opposed to more empathic, way. When carried to an extreme,

the problem in a highly intellectual, as opposed to more empathic, way. When carried to an extreme, this approach can take the form of mathematical modeling of people’s affective states.

Intelligence is generally assessed using “norm-referenced tests,” which evaluate test-takers not on their absolute performance but on their relative ranking compared to the scores obtained within a predetermined population, most often a nationally representative sample of same-aged peers. Individual scores represent how much better or worse any single person scores relative to the average. Norms can be generated for tests that are standardized or are administered in a consistent manner to all

can be generated for tests that are standardized or are administered in a consistent manner to all individuals who take the test. Most often, an individual’s performance in relation to the norms are provided in the form of a standard score, which has a mean of 100 (average) and a standard deviation of 15. Beginning in the early twentieth century, it was noted that raw scores on intelligence tests have consistently risen over time, so that the average score at any given time is significantly

have consistently risen over time, so that the average score at any given time is significantly higher than the average had been several years before. This phenomenon is known as the Flynn Effect, a term coined in the book “The Bell Curve” by authors Richard Herrnstein and Charles Murray. It was named after James R. Flynn, who first documented the effect. Every few years, intelligence tests must be updated and re-normed so that the scores obtained truly reflect an individual’s performance with

be updated and re-normed so that the scores obtained truly reflect an individual’s performance with respect to the rest of the population at that time. Recent studies have suggested the intelligence tests may not accurately capture and may underestimate the abilities of individuals with Autism Spectrum Disorder (ASD). Children with ASD were found to score significantly higher on a test measuring “fluid intelligence”, which involves novel problem-solving skills such as task management,

“fluid intelligence”, which involves novel problem-solving skills such as task management, understanding rules, and mental abstraction, than they did on the Wechsler Intelligence Scale for Children (WISC IV), which is thought to be heavily reliant on language skills and previously learned information (▶Crystallized Intelligence). Typically developing children tended to score equally well on both tests.

Intelligence quotient, abbreviated IQ, was originally the ratio of mental age to chronological age. The term “mental age,” popularized by early tests of intelligence, referred to the age of the children in the standardization sample whose performance the testee matched. Most tests of intelligence no longer use this ratio, and IQ instead refers to a person’s ability relative to available norms, which are usually age-based. By convention, IQ scores are designed to have a mean of 100 and a

which are usually age-based. By convention, IQ scores are designed to have a mean of 100 and a standard deviation of 15. Thus, about 95% of people fall within two standard deviations of the mean (i.e., 70–130). Norm-referenced scores have decreased reliability at extreme values; for this reason, most tests do not provide scores more than four standard deviations away from the mean (40–160). Giftedness is sometimes defined as scores more than two standard deviations above the mean. Intellectual

is sometimes defined as scores more than two standard deviations above the mean. Intellectual disability is defined based on both IQ and adaptive behavior; however, the current Diagnostic and Statistical Manual (APA, 2013) no longer classifies intellectual disability into levels based on IQ. Within the ASD literature, the terms “low functioning” and “high functioning” are sometimes used to denote IQs below 70 and above 70, respectively, though there is no empirical rationale for this practice.

IQs below 70 and above 70, respectively, though there is no empirical rationale for this practice. Although IQ and “intelligence” are often used interchangeably, IQ represents intelligence as defined by performance on a specific test.

The Interactive Trauma Scale (ITS) is an interactive touchscreen self-report measure of childhood trauma symptoms, administered via touchscreen tablet or smartphone, for children and youth with autism spectrum disorder (ASD). The measure is designed for use with children ages 6–14. Items are read aloud by the examiner as needed. Eight trauma exposure items ask about traumatic and adverse experiences. These are followed by 22 symptom items congruent with DSM-5 criteria for posttraumatic stress

These are followed by 22 symptom items congruent with DSM-5 criteria for posttraumatic stress disorder (American Psychiatric Association 2013) and 7 neutral items (e.g., “I like dinosaurs”) interspersed to maintain the child’s engagement and comfort. Children respond via a 5-point thermometer-like scale rated from “Never” to “Always.”

History This screening measure originated from a clinical need to obtain firsthand child and adolescent input in mental health assessments following suspected abuse, neglect, peer victimization (see ▶“Peer Victimization”), and other potentially traumatic events. Children with ASD are frequently exposed to potentially traumatic and other adverse experiences, though posttraumatic stress disorder (PTSD) in this population is only beginning to be studied. Current evidence indicates that children

(PTSD) in this population is only beginning to be studied. Current evidence indicates that children with ASD are more likely than other children to be abused or maltreated or to be victims of bullying than nondisabled children, their own siblings, and peers with other disabilities (Maïano et al. 2016; McDonnell et al. 2018; Zeedyk et al. 2014). They are also more likely than their typically developing peers to experience adverse childhood experiences such as household mental illness and

developing peers to experience adverse childhood experiences such as household mental illness and substance abuse, income insufficiency, parental divorce, and neighborhood violence (Berg et al. 2016; Kerns et al. 2017).

Following traumatic events, identifiable symptoms of anxiety, depression, PTSD, regression in adaptive behavior, and suicidality are evidenced in youth with ASD (Bleil Walters et al. 2013; Mayes et al. 2013; Mehtar and Mukaddes 2011; Valenti et al. 2012). Complicating the assessment of trauma symptoms in children and youth with ASD are associated communication deficits, emotion regulation difficulties, and multiple co-occurring psychiatric problems (Matson and Cervantes 2014). A PTSD diagnosis

and multiple co-occurring psychiatric problems (Matson and Cervantes 2014). A PTSD diagnosis in youth with ASD may also be missed or overlooked due to “diagnostic overshadowing” in which assessors inaccurately attribute challenging behaviors or anxiety to the ASD itself (Kerns et al. 2015; see ▶“Diagnostic Overshadowing”). Likely because of their core deficits in communication, emotional understanding, and expression, children with ASD show differences from typically developing children when

and expression, children with ASD show differences from typically developing children when asked to report psychological symptoms on behavior rating scales (Mazefsky et al. 2011; Mahan and Matson 2011). On self-report measures, they tend to self-enhance relative to typically developing peers, fail to complete measures, or interpret items in an overly literal manner, though there is evidence that higher functioning youth with ASD show no less self-awareness than typically developing youth

that higher functioning youth with ASD show no less self-awareness than typically developing youth (Schriber et al. 2014). Clinicians have come to rely on the reports of parents or other observers for this purpose (Mahan and Matson 2011). However, there is much evidence that even parents of typically developing, emotionally expressive children often rate them much differently than children rate themselves on a variety of measures (Renk and Phares 2004). Child and adolescent self-reports have

themselves on a variety of measures (Renk and Phares 2004). Child and adolescent self-reports have been shown to add significantly to the diagnostic picture in ways that are unique and not accounted for by observer reports (Adams et al. 2014).

Treatment providers and educators have increasingly turned to electronic touchscreen platforms including tablets, smartphones, and computers to present material to children with ASD (see ▶“Computer-Assisted Instruction to Teach Academic Skills”). Some of these programs have been shown to effectively engage children with ASD for education and treatment in increasingly effective ways (Neumann 2018).

Psychometric Data During the initial creation of the ITS prototype, graphics and response features were programmed and then posted for review on an online beta testing site (Testing.org). The prototype was then reviewed by a group of eight clinicians familiar with both autism and trauma in children. The original versions were improved based on feedback by the reviewers by adjusting the questions and the graphic design to enhance understanding and to provide unambiguous representation of

and the graphic design to enhance understanding and to provide unambiguous representation of trauma-related stimuli. These changes were incorporated into a revised version of the prototype for psychometric analyses.

Trauma exposure items for the prototype were selected based on commonly reported experiences in youth that are similarly tapped in other scales such as the UCLA Posttraumatic Stress Disorder Reaction Index (UCLA-PTSD-RI; Steinberg et al. 2013). Children are asked whether or not they have had physical neglect experiences, were “bullied or hurt by other kids,” witnessed “bad or scary things like someone getting hurt,” “hit or hurt by an adult,” touched by someone on “your private parts or get

someone getting hurt,” “hit or hurt by an adult,” touched by someone on “your private parts or get you to touch their private parts,” “teased or called mean names,” “in a natural disaster like a hurricane or earthquake,” and lost someone “because they died or went away.” Questions about exposure to bullying and teasing are included because of the high frequency of such experiences in children with ASD.

Symptom items for the prototype were written to assess each of the five DSM-5 PTSD criterion domains (American Psychiatric Association 2013): intrusion symptoms (e.g., “I have bad dreams”), negative mood (e.g., “I am no good”), dissociative symptoms (e.g., “I feel like things aren’t real”), avoidance (e.g., “I try to stay away from people, places or things that remind me. . .”), and arousal symptoms (e.g., “I do things that are not safe”). The measure is scored by summing Likert scale ratings

(e.g., “I do things that are not safe”). The measure is scored by summing Likert scale ratings of 3 (moderate level rating) and above in each criterion area. Respondents are judged to screen positive for PTSD symptoms when at least one exposure item is endorsed and one or more symptom item is endorsed in each of the intrusion and avoidance domains, with two or more in the arousal and negative mood domains, consistent with DSM-5 criteria.

User Satisfaction In a recent validation study (Hoover and Romero 2019), participant ratings were highly positive: 81% rated it as easy or very easy to use; 74% rated it as comfortable and understandable or “very much” so, and 76% rated it as effectively facilitating identification of feelings. The overall experience was rated as “good” or “really good” by 88% of participating children.

Validity and Reliability Children’s endorsements of traumatic exposures on the ITS were moderately correlated with their responses to similar items on the UCLA Post-traumatic Stress Disorder Reaction Index-Self Report (UCLA-SR; r = 0.554; p < 0.05) and UCLA parent report form (UCLA-PR; r = 0.638; p < 0.01). The item “teased or called mean names” was the most frequently endorsed (75%) on the ITS, followed by “bullied or hurt by other kids” (70%). Death/loss of a loved one (65%) and witnessing

followed by “bullied or hurt by other kids” (70%). Death/loss of a loved one (65%) and witnessing “bad or scary things like someone getting hurt” (50%) were also frequently endorsed.

Overall, the ITS and UCLA-SR trauma symptom severity ratings were strongly correlated (r = 0.782; p < 0.01) with lower correlations between the ITS and UCLA-PR (r = 0.223) and between the UCLA-SR and UCLA-PR (r = 0.314). Table 1 presents Pearson’s r correlations between ratings on items of similar content across the three measures. Of the 19 individual item comparisons between the UCLA-SR and ITS, 13 were moderately to strongly correlated. These include the following items: scared/afraid (r =

13 were moderately to strongly correlated. These include the following items: scared/afraid (r = 0.514; p < 0.05), amnesia (r = 0.549; p < 0.05), feelings of being “no good” (r = 0.620; p < 0.01), diminished closeness with others (r = 0.622; p < 0.01), feeling angry (r = 0.682; p < 0.01), self-blame/guilt (r = 0.697; p < 0.01), difficulties with attention and concentration (r = 0.748; p < 0.001), and sleep disturbance (r = 0.785; p < 0.001).

| Symptom items     | ITS/UCLA-SR | ITS/UCLA-SR | UCLA-SR/UCLA-PR | |-------------------|-------------|-------------|-----------------| | Total correlation | 0.782**     | 0.223       | 0.314           | | Bad dreams        | 0.155       | 0.479*      | -0.009          | | Flashbacks        | 0.341       | 0.203       | 0.188           | | Try not to think  | -0.049      | -0.202      | 0.300           | | Reminders upsetting | 0.105       | 0.452*      | 0.589**         | | Avoid people,

| | Reminders upsetting | 0.105       | 0.452*      | 0.589**         | | Avoid people, places | 0.348       | 0.434       | 0.326           | | Amnesia for event | 0.549*      | -0.063      | 0.413           | | Self-blame/guilt  | 0.697**     | 0.535*      | 0.469*          | | Self “bad/no good” | 0.620**     | 0.050       | 0.216           | | Sad/not happy     | 0.233       | 0.025       | -0.230          | | Scared/afraid     | 0.514*      | -0.028      | -0.022          | |

| -0.230          | | Scared/afraid     | 0.514*      | -0.028      | -0.022          | | Diminished interests | 0.089       | 0.631**     | 0.250           | | Diminished closeness | 0.622**     | 0.364       | 0.486*          | | Angry             | 0.682**     | 0.332       | 0.236           | | Risky/unsafe      | 0.407       | 0.272       | -0.042          | | Hypervigilance    | 0.265       | 0.422       | 0.004           | | Startles easily   | 0.663**     | 0.296       | 0.203

| 0.422       | 0.004           | | Startles easily   | 0.663**     | 0.296       | 0.203           | | Attention/concentration | 0.748***    | 0.547*      | 0.445*          | | Sleep disturbance | 0.785***    | 0.364       | 0.137           | | De-realization    | 0.374       | 0.362       | -0.079          | *p < 0.05; ** p < 0.01; ***p < 0.001  Five (25%) of the participants screened positive for PTSD diagnosis on the ITS as they endorsed the requisite symptoms in each DSM-5 criterion

for PTSD diagnosis on the ITS as they endorsed the requisite symptoms in each DSM-5 criterion area. These participants reported an average of 6.2 trauma exposure types (SD 2.925) and all of them endorsed experiences of bullying and teasing victimization. Those who did not screen positive for PTSD on the ITS reported experiencing fewer types of traumatic events (M 3.80; SD 1.707; t = 2.06, p < 0.05). PTSD-positive screening youth had higher overall frequency scores on the ITS (M 62.40; SD

< 0.05). PTSD-positive screening youth had higher overall frequency scores on the ITS (M 62.40; SD 11.876) than those who did not screen positive on the ITS (M 41.53; SD 14.366; t = 2.78, p < 0.05). Three of the five participants also screened positive for PTSD on the UCLA-SR and four on the UCLA-PR. Age-adjusted PVT scores were essentially uncorrelated with overall symptom frequency ratings on the ITS (r = 0.187). Internal consistency reliability was assessed using Cronbach’s coefficient alpha

ITS (r = 0.187). Internal consistency reliability was assessed using Cronbach’s coefficient alpha (α = 0.855), suggesting adequate internal consistency of the ITS symptom items.

Clinical Uses The ITS employs a tablet or smartphone-based touchscreen delivery method meant to engage children with autism in order to obtain their self-reports of potentially traumatic events and symptoms. Touchscreen devices are popular and familiar to children with ASD and may facilitate screening and assessment in community and treatment settings, for initial identification of trauma, and referral for more comprehensive trauma evaluation.

The measure shows initial evidence for usefulness and reliability in clinical mental health settings with children and youth ages 6–14 who have ASD and suspected exposure to trauma. Given the paucity of studies and lack of trauma measures designed for use with children who have developmental disabilities, the ITS provides a potentially readily accessible screening format that has been previously unavailable. Besides being a useful clinical tool, including firsthand reports from youth about

unavailable. Besides being a useful clinical tool, including firsthand reports from youth about their traumatic experiences rounds out a complete assessment to help answer as-yet unanswered questions about ASD and PTSD. For example, current research does not clarify whether children with ASD show similar symptoms to their typically developing peers (Hoover 2015). Some argue that children with ASD may be either more or less sensitive to traumatic experiences. Such sensitivity may depend on the

may be either more or less sensitive to traumatic experiences. Such sensitivity may depend on the child’s overall level of adaptive functioning, emotion regulation, and attentiveness to potentially traumatizing information about their surroundings (Kerns et al. 2015).

The ITS asks specifically about peer victimization and its effects, an aspect that is missing in most extant childhood trauma measures. A history of physical and verbal bullying was reported by most of the validity sample (Hoover and Romero 2019) and is commonly reported by children with ASD. As serious negative mental health outcomes have been shown to arise from bullying, especially among youth with ASD (Zablotsky et al. 2013; Mayes et al. 2013), these youth tend to report differently about

with ASD (Zablotsky et al. 2013; Mayes et al. 2013), these youth tend to report differently about their victimization experiences than their caregivers, such assessment data is especially needed. Effective treatment of challenging behaviors, anxiety, and regression in adaptive functions will necessarily incorporate an understanding of children’s trauma exposures and symptoms.

An interdisciplinary team is a group comprised of specialists from multiple and varying backgrounds or fields and/or individuals with expertise or extensive knowledge about the individual, topic area, object, or other unit of analysis, for purposes of combining skills, resources, and information that will guide decisions and practices concerning the focus of study. Teams can be formed in health care, educational, counseling, and other settings concerning the needs of individuals with autism

care, educational, counseling, and other settings concerning the needs of individuals with autism spectrum disorders. In cases of supports and services in educational settings for those with ASD from birth through 21 years of age, members of the planning and placement team (PPT) or IEP team, individualized family services plan (IFSP), and individualized education program (IEP) teams conduct, interpret, and present findings from evaluations conducted independently to the entire group for

interpret, and present findings from evaluations conducted independently to the entire group for purposes of cooperation and collaboration in developing programs and planning instruction jointly for children with disabilities. From comprehensive assessments conducting in the medical setting to those included as part of a comprehensive evaluation process for special education eligibility determinations, an interdisciplinary team is necessary for providing the expertise in understanding outcomes,

an interdisciplinary team is necessary for providing the expertise in understanding outcomes, interpreting results, and educating other team members on how to translate findings into practice and interventions. Since autism spectrum disorders affect multiple developmental domains, utilizing an interdisciplinary team constitutes best practice for a diagnosis of ASD and is an essential component of the assessment process as well as developing and implementing intervention plans. An

component of the assessment process as well as developing and implementing intervention plans. An interdisciplinary team promotes communication among team members and leads to a more integrated, cohesive translation of findings. A quality interdisciplinary process involves individual contributions to inform the construction of the overall picture of the individual with ASD; individual interpretations enable formulation of conclusions and recommendations based upon the combined efforts of the

enable formulation of conclusions and recommendations based upon the combined efforts of the team.

Interests characterized as “circumscribed” are included in the diagnosis of autism within the general area of restricted and repetitive behaviors (RRBs). For example, in sign B3, DSM-5 describes “highly restricted, fixed interests that are abnormal in intensity or focus” and provides as examples “strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest.” Unusually focused, intense, and persistent interests in autism may feature the

interest.” Unusually focused, intense, and persistent interests in autism may feature the amassing of large quantities of information and resistance to any diversion from their pursuit (Boyd et al. 2007). Importantly, what are called circumscribed interests in autism are associated with positive emotions and the potential for great satisfaction, thus contrasting with obsessions and compulsions, which are dreaded and troubling (Klin et al. 2007).

Pinpointing the concept of circumscribed interests and distinguishing it from related signs included in the general RRB area is however not easy. Indeed, the delineation between circumscribed interests and other RRB DSM-5 diagnostic signs is somewhat uncertain and arbitrary, with apparent redundancies and overlap across development. For instance, repetitive use of objects (sign B1) may be a form of attachment to or preoccupation with those objects (sign B3), as may be unusual interest in

form of attachment to or preoccupation with those objects (sign B3), as may be unusual interest in sensory aspects of the environment (including objects; sign B4). Highly restricted, fixed interests (sign B3) and stereotyped motor movements (sign B1) may both be described externally as insistence on sameness and inflexible adherence to routines (sign B2). Further, the word “interest” implies some kind of seeking behavior and positive emotions. Repetitive motor movements or lining up toys (sign

kind of seeking behavior and positive emotions. Repetitive motor movements or lining up toys (sign B1) and visual fascination with lights or movement (sign B4) may be associated with positive emotions as well. In that sense, the distinction between, for example, persistently seeking out ceiling fans and looking laterally and happily to them, and the same behavior applied to finger movements, is arbitrary and both could be encompassed under circumscribed interests (sign B3).

Other divisions or subgroupings of RRBs have also been proposed. In the Autism Diagnostic Interview (ADI), circumscribed interests are distinguished from “unusual preoccupations.” The latter focuses on the odd or peculiar quality of the interest (e.g., ceiling fans), whereas the former are also found in the nonautistic population (e.g., hockey statistics) but with different qualitative properties. The autistic quality of an autistic interest is related to its circumscribed nature, degree of

The autistic quality of an autistic interest is related to its circumscribed nature, degree of focus, overtly or relatively nonsocial quality, and atypical progression over time, as well as to its being at odds with developmental level or context (Lord et al. 1994). Another subgrouping of the RRB area attempts to distinguish “low-order” behaviors characterized by repetition of movement, associated with lower developmental levels and “simple” behaviors (e.g., gestural stereotypies), from

with lower developmental levels and “simple” behaviors (e.g., gestural stereotypies), from “high-order” behaviors, associated with higher developmental levels and more complex behaviors (e.g., circumscribed interests; Turner 1999). However, both high-order (DSM-5 signs B2, B3) and low-order (signs B1, B4) behaviors share the qualities of interest and focus. This is why some studies collapse verbally/abstractly (circumscribed interests) and nonverbally/concretely (unusually strong attachment to

(circumscribed interests) and nonverbally/concretely (unusually strong attachment to certain objects or parts of objects) defined focused interests, independently of the verbal capabilities of the individual and his developmental level.

Historical Background In Kanner’s first descriptions, the notion of circumscribed interest is present in the form of intense focus, expressed as repetition and insistence on sameness: “The repetitiousness assumes the form of obsessive preoccupations” (Kanner 1943). It is also positively described as an “excellent, purposeful, and intelligent relation to objects that do not threaten to interfere with their aloneness.” Robinson and Vitale (1954) independently described three individuals under

with their aloneness.” Robinson and Vitale (1954) independently described three individuals under the title “Children with circumscribed interest patterns” and emphasized precocity in knowledge as well as deleterious effect of interests on typical relationships with peers. Kanner’s first use of the term “circumscribed interests” was in his commentary on Robinson and Vitale’s work. In 1980, the DSM-III description of autism included one mandatory RRB criterion: “Bizarre responses to various

DSM-III description of autism included one mandatory RRB criterion: “Bizarre responses to various aspects of the environment, for example, resistance to change, peculiar interest in or attachments to animate or inanimate objects.” The expanded 1987 DSM-III-R multiple-item RRB domain included both “persistent preoccupation with parts of objects” and “markedly restricted range of interests and a preoccupation with one narrow interest.” In 1994, this carried over into the DSM-IV attempt to

a preoccupation with one narrow interest.” In 1994, this carried over into the DSM-IV attempt to distinguish implicitly verbal interests from concretely defined, implicitly non-verbal interests. Finally, the 2013 DSM-5 added a “sensory” component to the RRB area, encompassing unusual sensory interests.

Empirical Findings A growing body of descriptive knowledge documents the range of autistic interests. In a retrospective compilation of Asperger’s clinical case records, of 44 children diagnosed with “autistic psychopathy” for whom information was available, 82% had “special, original and narrow interests” (Hippler and Klicpera 2003, p. 297; see also Klin et al. 2007, as well as Gilchrist et al. 2001, for similar findings). For 33 of these children, domains of interest were categorized as

al. 2001, for similar findings). For 33 of these children, domains of interest were categorized as animals and nature (30%), technical and/or scientific interests (27%), obsessive reading/collecting facts (24%), public transport systems (18%), religion (12%), drawing (12%), music (9%), and space/astronauts (6%). Specific unusual interests included eye muscles, rubbish bins, earthworms, and “inventing own methods for calculation.”

An investigation among the parents of 61 autistic individuals indicated that the most frequent materials or areas of information involved in circumscribed interests were Japanese animation and cartoon characters, electric and mechanical apparatus, dinosaurs, space/physics, natural disasters, historical events, encyclopedias/fact books, videogames, technical manuals, religion or politics, reptiles, rodents, printed material in general, television in general, and facts (South et al. 2005). In a

rodents, printed material in general, television in general, and facts (South et al. 2005). In a survey of 92 parents, “obsessional interests” in autistics were reported in broad categories including physics (84%), taxonomy (73%), and TV/audio (64%; Baron-Cohen and Wheelwright 1999). Another survey conducted among the caregivers of a large population of fluently speaking autistic individuals revealed that circumscribed interests frequently involve memorization of facts expressed verbally,

revealed that circumscribed interests frequently involve memorization of facts expressed verbally, including an early interest in letters and numbers (Klin et al. 2007). Eight categories of activities were observed, including two types of fact collection, verbal memory (e.g., naming makes/models of cars) and visual memory with associated activities (e.g., making LEGO dragons). The remaining six categories were sensory behaviors (e.g., lining up objects), math (e.g., naming prime numbers),

six categories were sensory behaviors (e.g., lining up objects), math (e.g., naming prime numbers), ordering information (e.g., classifying insects), dates and time (e.g., memorizing birthdays), hoarding (e.g., collecting Frisbees), and letters/numbers (e.g., decoding).

Circumscribed interests may change with development, from early interest for parts of objects (Gilchrist et al. 2001; Richler et al. 2010) and letters and numbers (Ostrolenk et al. 2017) to more complex interests in older individuals (Klin et al. 2007). When longitudinal data are available, this gradual increment is evident even at the individual level (South et al. 2005). The birth of circumscribed interests is understudied but in some cases can be traced back to a unique encounter with a

interests is understudied but in some cases can be traced back to a unique encounter with a specific material (e.g., Mottron et al. 2006). Circumscribed interests are also associated with higher apparent IQ (Bishop et al. 2006), as well as with typical or precocious speech development, although this may trivially depend on the overlap between the definition of circumscribed interests and speech abilities (Lam et al. 2008). Specificity toward intellectual disability is high (Bodfish et al.

abilities (Lam et al. 2008). Specificity toward intellectual disability is high (Bodfish et al. 2000), but not toward exceptional typical individuals, at least when it comes to importance of personal investment and association with higher intelligence (Deloache et al. 2007).

Although never studied in a systematic way, circumscribed interests seem highly associated with savant abilities, given that any reported savant ability involves a circumscribed interest in the relevant domain (Young 1995). Interest can be ascertained through overt interacting behaviors with a specific material. These behaviors result in the cognitive manipulation of units composing this material, which favors a “frequency effect,” that is, the faster recognition and stronger memorization of

which favors a “frequency effect,” that is, the faster recognition and stronger memorization of the material involved in the savant ability (Mottron et al. 1996). In this sense, focused intense (ergo “circumscribed”) interests may represent the autistic equivalent of the ensemble of behaviors and cognitive modifications associated with expertise in nonautistics.

Adaptive properties of circumscribed interests are considered in contrasting ways among researchers. Circumscribed interests may represent the ways in which autistics learn well (Dawson et al. 2008) and are associated with positive emotions across the lifespan (Mercier et al. 2000; Smerbeck 2017). They constitute a heuristic tool to understand the world (Klin et al. 2007), foster skill development and communication (Winter-Messiers 2007), and become the foundation for higher education and

and communication (Winter-Messiers 2007), and become the foundation for higher education and employment in adulthood (Patten-Koenig and Hough-Williams 2017). Conversely, they may be regarded as behaviors which require the largest accommodation in parents of autistics (Gabriels et al. 2005), and most interfere with other activities: a large portion of an autistic’s free time is overtly dedicated to their intense interests. The extent to which such interests are judged as “interfering” in

to their intense interests. The extent to which such interests are judged as “interfering” in preschool and early school years predicts Vineland adaptive behavior scores later in adolescence (Klin et al. 2007).

The overlap or autonomy of circumscribed interests with or toward other RRBs in autism can also be studied through factorization of ADI RRB items, although the relative lack of precision of this tool for the repetitive area limits the informative value of these studies. Whereas factorization studies among RRBs consistently oppose a “repetitive sensory and motor behaviors” factor to an “insistence on sameness” factor, circumscribed interests stand as a distinct factor (Lam et al. 2008) and do

on sameness” factor, circumscribed interests stand as a distinct factor (Lam et al. 2008) and do not correlate with participant characteristics, supporting its conceptual autonomy.

Neurobiological counterparts of circumscribed interests are found in studies of genetics and brain functioning. Circumscribed interests are partially shared by parents in the form of intense preoccupations (Hippler and Klicpera 2003; Smith et al. 2009). Involvement of the amygdala when an autistic interacts with the subject of a circumscribed interest has been demonstrated through fMRI (Grelotti et al. 2005). In the case of hyperlexia, a label which groups focused interest in written materials

et al. 2005). In the case of hyperlexia, a label which groups focused interest in written materials with exceptional abilities in decoding text, autistic expertise is associated with a functional cortical rededication of brain areas involved in reading (Turkeltaub et al. 2004). An involvement of synesthesia has also been suspected in the choice of domain of interest as well as on the nature of mental manipulation operations performed on this material (Mottron et al. 2013).

Theoretical Accounts There is agreement on the fact that RRBs have a certain kind of etiological and phenotypical autonomy from sociocommunicative behaviors in autism, preventing a straightforward explanation of one by the other (Happé et al. 2006; Richler et al. 2010). Their relative magnitude is not correlated according to current measures, while their distribution in the general population and their developmental profile differ. Available theoretical accounts of circumscribed interests

and their developmental profile differ. Available theoretical accounts of circumscribed interests include those which do or do not posit a causal deficit. One account originated with the overt resemblance between perseveration in frontally injured patients and the constancy autistics demonstrates in the pursuit of their circumscribed interest. This led to the proposal of an executive dysfunction account of circumscribed interests (Turner 1999). However, autistic individuals do not consistently

account of circumscribed interests (Turner 1999). However, autistic individuals do not consistently display impairments in classic executive tasks, which questions how “executive” the purported deficit is. Other accounts of circumscribed interests invoke the atypical strength or hyperfunctioning of a cognitive substructure. Two models hypothesize that atypical perception – understood as resulting from diminished top-down processes (weak central coherence; Happé and Vital 2009) or as enhanced

from diminished top-down processes (weak central coherence; Happé and Vital 2009) or as enhanced perceptual functioning (Mottron et al. 2009) – is involved in the nature and processing of materials which are the object of autistic interests.

According to the EPF model, intense focused interests are the behavioral and cognitive counterpart of enhanced pattern detection and manipulation along autistic development. This is manifested, among other behaviors, by a spontaneous orientation toward genuine regularities loading a domain of interest. Materials involved in circumscribed interests, as well as in savant syndrome, often consist of ubiquitous human codes (e.g., written language in various formats, music, numeration, and

of ubiquitous human codes (e.g., written language in various formats, music, numeration, and three-dimensional graphic representations) rich in regularities across multiple scales, from simple units to overarching structures. Thus, there may be veridical mapping between isomorphic structures through pattern detection mechanisms, which are especially active in autism. In another account, autistics are characterized by hypersystemizing. Systemizing is described as detecting and applying strict,

are characterized by hypersystemizing. Systemizing is described as detecting and applying strict, inflexible rules or laws, such as those of “if p, then q” form (Baron-Cohen et al. 2009). Narrow or circumscribed interests thus result from the rigidity of hypersystemizing. Whatever the model, there is in the last decade a belated trend toward envisioning circumscribed interests more accurately in autism research, for the benefit they bring to the well-being of the person. This includes

in autism research, for the benefit they bring to the well-being of the person. This includes preliminary steps toward studying how autistic interests may be harnessed in early intervention, in education, in employment, and in finding a social niche.

Conclusion The importance of what are called circumscribed interests in autism research, and their appreciation as a major organizer of quality of life for autistics, has fluctuated over the years. However, the area as a whole remains understudied relative to its importance to both autistic and nonautistic individuals and relative to its potential to cast a light on the fundamental nature of autistic cognition. More accurate, less pathologized, and less biased views of autistic interests also

cognition. More accurate, less pathologized, and less biased views of autistic interests also offer new perspectives for the integration of autistic people in a modern and open society.

Future Directions * What role does availability of information play in the development, nature, narrowness, and outcomes of autistic interests?
* To what extent and under what circumstances are autistic interests truly restricted or circumscribed?
* Under which circumstances do autistic interests lead to very good or exceptional outcomes?
* Is there a critical period for intense focused interests in autism, or can they develop across the autistic lifespan, given the opportunity?

* Does the presence or absence of speech delay modify the nature and course of circumscribed interests in autism?
* What is the association between circumscribed interests and the acquisition of literacy in autistic individuals?

Adaptive emotion regulation involves the ability to understand, monitor, and modify internal states in order to achieve one’s goals (Thompson 1994). Although infants demonstrate certain behaviors thought to assist with the regulation of arousal (e.g., gaze aversion, thumb-finger sucking), it is generally agreed that very young children are primarily “co-regulated” by their caregivers (Cole et al. 1994; Kopp 1982). Over the first few years of life, more direct co-regulation (e.g., responsive

al. 1994; Kopp 1982). Over the first few years of life, more direct co-regulation (e.g., responsive comforting, instrumental support, emotion contagion) gradually gives way to parental efforts aimed at helping children become more autonomous in their regulatory abilities (Cole et al. 1994; Grolnick and Farkas 2002; Kopp 1982; Morris et al. 2007). Although more general patterns of parent or family behavior continue to contribute to the development of children’s emotion regulation throughout

behavior continue to contribute to the development of children’s emotion regulation throughout childhood, parents increasingly engage in more didactic socialization strategies, such as intentional modeling and what is commonly referred to as either emotion “coaching” or “scaffolding” (Baker et al. 2011; Gottman et al. 1996; Morris et al. 2007).

Parental environments characterized by responsive involvement, sensitive structuring, and support for child autonomy are conceptualized as facilitating a shift from external co-regulation to internal regulatory control (Grolnick and Farkas 2002), with parenting contributing critically to underlying biobehavioral processes (Beauchaine et al. 2007; Cole et al. 1994). Internalization of co-regulatory supports is suggested when a child begins to demonstrate autonomous use of strategies or

supports is suggested when a child begins to demonstrate autonomous use of strategies or competencies that were originally promoted in the context of external (e.g., parent) support (Baker et al. 2019; Cole et al. 1994; Grolnick and Farkas 2002; Kopp 1982). Theoretical accounts of internalization processes related to the regulation of emotion suggest that great strides in self-regulation occur during the preschool years (Cole et al. 1994; Kopp 1982). Although clear empirical evidence for age

during the preschool years (Cole et al. 1994; Kopp 1982). Although clear empirical evidence for age markers related to the development of emotion regulation in children is lacking, it is generally assumed and expected that most children demonstrate a reasonable level of self-regulation by middle childhood (Cole et al. 1994).

Children with autism spectrum disorder (ASD), as a group, experience considerable difficulty in regulating their emotions, as demonstrated by higher levels of behavior indicative of emotion dysregulation, use of fewer strategies presumed to be helpful for regulation, and reduced effectiveness of such strategies as compared to peers with neurotypical development (Jahromi et al. 2012; Samson et al. 2015). The longitudinal course of the development of emotion regulation in children with ASD

et al. 2015). The longitudinal course of the development of emotion regulation in children with ASD requires empirical study. However, it is clear that many children with ASD continue to exhibit significant emotion dysregulation well into the elementary school years (e.g., Fenning et al. 2018; Jahromi et al. 2012) and at least one cross-sectional study did not find lower dysregulation as a function of higher child age in a sample of 4- to 11-year-olds with ASD (Fenning et al. 2018). This

function of higher child age in a sample of 4- to 11-year-olds with ASD (Fenning et al. 2018). This apparent delay in the development of autonomous regulatory competence in children with ASD may be accompanied by (or potentially a product of) a delay in the internalization of caregiver co-regulatory support. Indeed, Ting and Weiss (2017) did not find any association between parent-child discussion and regulation strategies generated independently by school-aged children with ASD.

The cross-sectional data from Fenning et al. (2018) were re-analyzed to specifically address age differences in the apparent internalization of co-regulatory support. Baker et al. (2019) hypothesized that increased internalization would be observed at higher child ages, as indexed by stronger consistency in dysregulation scores across parent-child and independent child tasks and a stronger inverse association between parental scaffolding during the dyadic task and child dysregulation during

association between parental scaffolding during the dyadic task and child dysregulation during the independent task. Indeed, higher consistency across tasks was observed for the older as compared to the younger children in the sample of children ages 4–11 years. In addition, the association between parental scaffolding and children’s independent dysregulation became increasingly negative at older child ages; however, even at the higher ages, the association was only significant at a trend

older child ages; however, even at the higher ages, the association was only significant at a trend level, suggesting that internalization may not be observed until late childhood or even early adolescence in children with ASD.

While the apparent internalization of co-regulatory supports in children with ASD may depend upon child chronological (but perhaps not mental) age (Baker et al. 2019), the mechanisms accounting for this potential group delay or individual differences in the development of these processes remain unknown. Neurodevelopmental differences associated with the core features of ASD (e.g., reduced social awareness, cognitive and behavioral inflexibilities) are thought to contribute significantly to the

awareness, cognitive and behavioral inflexibilities) are thought to contribute significantly to the regulation difficulties experienced by these children (Fenning et al. 2018; Mazefsky and White 2014) and may similarly impact relevant internalization processes. Although environmental factors are unlikely to account for the status-group difference, certain parenting behaviors may contribute to individual differences in internalization processes within this population. For example,

to individual differences in internalization processes within this population. For example, Hirschler-Guttenberg et al. (2015) reported that maternal authoritarian parenting was associated with limited seeking of parental co-regulatory support in preschoolers with ASD.

There is clear evidence that children with ASD, as a group, experience difficulties in their ability to regulate emotions. What is desperately needed is information relating to the developmental course of emotion regulation in these children, including the identification of not only what might promote beneficial trajectories but also when and how these influences contribute. The apparent lack of concordance between parent co-regulatory support and children’s independent regulatory competence

concordance between parent co-regulatory support and children’s independent regulatory competence during the early school years is concerning, and, should these early findings be replicated, understanding the degree to which alternative parenting behaviors or scaffolding supports are beneficial as children with ASD age may be key to intervention efforts aimed at promoting regulatory competence in this population.

The Internet has provided people around the world with opportunities to find information and to meet people at the click of a button. Studies have even shown that use of the Internet can increase academic performance and certain other skills (Packard 2007). Despite the benefits however, the Internet can bring about risks, especially for those on the autism spectrum. Some of these risks include the following:

* An increased chance of being bullied * Inadvertent sharing of personal information such as name, address, phone number, and social security numbers making someone vulnerable to identity theft
* The chance of viewing of inappropriate information or pictures, either violent or pornographic

* The chance of viewing of inappropriate information or pictures, either violent or pornographic
* On-line sexual activity which can become addictive * The possibility of unintended contact with militant groups * The ability to purchase items, both legal and illegal * The possibility of on-line gambling and possible addiction to virtual casinos due to compulsive behaviors
* The downloading of unwanted files such as viruses or illegally downloaded music

* The downloading of unwanted files such as viruses or illegally downloaded music
* An increased chance of becoming a target of a potential abuser, stalker or pedophile

* Behaving inappropriately on social network sites * Spending too much time video gaming with others * The obsessive collecting of data and images  Historical Background Studies have consistently shown that people with special needs are at a greater risk of being bullied than their peers (Baumeister et al. 2008). These autistic individuals are set apart as different, and they have characteristics that isolate them from others and make them targets. In one study of children with autism, rates of

that isolate them from others and make them targets. In one study of children with autism, rates of bullying were over 44% (Montes and Halterman 2007). Children and adolescents with Asperger’s syndrome showed increased rates of being a victim of bullying (Carter 2009) with self-reported rates of 75% in one study (Little 2001). Higher rates of verbal and physical attacks are believed to arise from difficulties with social interaction and the failure to read social cues which is a trait of those

difficulties with social interaction and the failure to read social cues which is a trait of those on the spectrum (American Psychiatric Association 2000). This makes them more likely to be bullied, as they are perceived as odd and different. The frequency of aggressive behaviors in spectrum disorders also increases the chance that they might perpetrate bullying behaviors.

Current Knowledge Cyber bullying is the result of technology, such as e-mail, instant messaging, cell phone texts, or social network sites being used as a tool for bullying (Kowalski and Limber 2007). There has been little research on cyber bullying and spectrum disorders, but one study that examined the prevalence of cyber bullying via the Internet found that 7% of children aged 12–19 reported being cyber bullied via the Internet and 4% said they had been cyber bullied through text messaging

being cyber bullied via the Internet and 4% said they had been cyber bullied through text messaging (Didden et al. 2009). Under 50% of victims of cyber bullying report not knowing the identity of their abuser, which clearly differentiates cyber bullying from traditional bullying as people tend to say and do things anonymously that they would not do in a one-on-one interaction (Kowalski et al. 2008). This can also occur any time of day or night which leaves victims feeling extremely vulnerable.

This can also occur any time of day or night which leaves victims feeling extremely vulnerable. For those on the spectrum, the fear of having technology taken away from them by their parents makes them reluctant to report this bullying to an authority figure. For children with special needs, the Internet might be an easier way of socializing with peers because of their social skills deficits and lack of empathy, yet will likely lead to problems in the virtual world and increased likelihood that

of empathy, yet will likely lead to problems in the virtual world and increased likelihood that they will be involved in cyber bullying. Children who have reported on-line harassment have been found to have less developed social skills (Shea and Wiener 2003).

In a study conducted in 2011 by Kowalksi and Fedina, over 21% of those surveyed indicated they had been cyber bullied within the past 2 months, while just under 6% said they had perpetrated cyber bullying at least once within the same time period. Parents in this study seemed rather uninformed about their children’s experiences with cyber bullying. Seventy-three percent said their child had never been cyber bullied and another 12% reported that they did not know. Twelve percent indicated that

been cyber bullied and another 12% reported that they did not know. Twelve percent indicated that they did not know if their child had perpetrated cyber bullying. Eighty-five percent claimed that their child had never cyber bullied anyone, yet only 9% of the parents said that they had ever discussed cyber bullying with their child despite the fact that 51% of the parents acknowledged that they knew something about the topic The most common means of cyber bullying reported was through instant

knew something about the topic The most common means of cyber bullying reported was through instant messaging (66.7%) with social networking sites coming in second (60%). A large percentage of those who were cyber bullied indicated that the perpetrator was a friend (50%) and 37.5% indicating the perpetrator was another student at school. Twenty-five percent said they did not know who the perpetrator was. The results of this bullying often lead to anxiety, depression, and low self-esteem.

While being bullied on the Internet is certainly an issue of concern, it is becoming more common to read about sexual predators finding their victims on the net. Teens especially will use their computers late at night, unmonitored by a parent, and are more likely to come across sex abusers looking for victims (Dennis Debbaudt, Safety Issues for Adolescents with Asperger Syndrome 2003). While often, parents are pleased that their child has “a friend,” the concern for the type of friend is

often, parents are pleased that their child has “a friend,” the concern for the type of friend is absent and the very literalness of those on the spectrum puts this population in danger. The FTC stated that identity theft is the number one complaint they get and has continually increased by 20% each year. On the Internet, this can occur by using unsecured websites and divulging information such as social security numbers. It is of utmost importance that individuals with autism understand the

as social security numbers. It is of utmost importance that individuals with autism understand the importance of using secure websites when engaging in on-line shopping or whenever using a credit card on the Internet. This needs to be explained as making sure that the URL of the website starts with https://not http://. That extra “s” is what signifies the website as “secure.” It is also imperative that autistic individuals understand the types of information that should not be shared on the

that autistic individuals understand the types of information that should not be shared on the Internet. It is not uncommon to discover that many people with autism have unknowingly purchased subscriptions to magazines, web sites, and other web services due to their impulsivity and lack of discipline in reading the terms and conditions that often come with agreements.

Due to individuals on the autism spectrums’ impulsivity, they are unlikely to think ahead of possible consequences or their behaviors. They also have a tendency to become obsessed with things rather quickly. This is often what occurs when an autistic person, often by accident through a misdirected search using a word such as “toy,” a misspelled URL, a misleading web site or e-mail, or a link or photo sent by a peer or through spam, finds pornography on the Internet (Wolak et al. 2007). While

photo sent by a peer or through spam, finds pornography on the Internet (Wolak et al. 2007). While many believe spending time playing video games can be a waste of time, it has been found that these games help children with autism learn to cope with noise, regulate their balance, and improve sensory processing (www.newswise.com). Vision Audio, Inc., has created EASe (Electronic Auditory Stimulation effect) video games and audio CD’s that are therapeutic tools for children on the autism spectrum

effect) video games and audio CD’s that are therapeutic tools for children on the autism spectrum disorder and those diagnosed with auditory hypersensitivity, central auditory processing disorder, or sensory integration disorder. Therapists have clinically tested the nonviolent EASe video games since 2007 with positive results. The sensory events in the virtual world of these games eventually create a repertoire of experiences that help the autistic child learn to cope with similar events in

a repertoire of experiences that help the autistic child learn to cope with similar events in the real world.

Future Directions Interventions Being concrete and establishing rules for social networking sites is particularly helpful for someone on the spectrum. Talking with the individual and explaining clearly what each rule means is extremely important. Rules should be posted near the computer for a constant reminder of appropriate behaviors such as the following:
1. Talk only with friends. 2. Keep address, phone number, social security number, and banking information secret.

3. Talk to a parent or guardian when someone you do not know tries to talk to you.
4. Think before posting comments. Ask yourself if anyone is going to care before you start typing. Will the person at the other end understand if you are joking?
5. Be careful about posting photos. Make sure all photos are appropriate for viewing and also that other people who may be in the photo are okay with their pictures being posted as well.

6. Do not do anything online that you would not do in real life.  There are also Internet safety symbols created by Widgit Software that can be downloaded at http://www.childnet.com/kia/sen/widgetsmart.aspx. Each symbol is hand-drawn, clear, and concise and illustrates a single concept without adding unnecessary information. (http://www.childnet.com). It is crucial that the individual with autism understands the consequences of inappropriate behaviors. For a younger person or teen, it might be

understands the consequences of inappropriate behaviors. For a younger person or teen, it might be losing computer privileges with the understanding that correcting these behaviors will reverse this consequence in time. For someone who is an adult, it might be explaining that their behaviors could bring about danger to the family and this may result in their being asked to find another place to live or having their employment terminated if they are an employed adult. Sometimes being this

to live or having their employment terminated if they are an employed adult. Sometimes being this concrete is what is necessary for the individual with autism to understand that conforming to social norms is necessary.

As a parent or caregiver, there are other precautions that can be taken when the child with an autism spectrum disorder claims to have met a “friend” on-line such as something known as “time checking.” This is when the correspondent holds up a newspaper with the date and time (not unlike a hostage displaying a newspaper), takes a picture of him or herself and emails it back immediately. This instant validation process makes it very difficult for an on-line predator to operate anonymously

instant validation process makes it very difficult for an on-line predator to operate anonymously (http://www.autismkey.com/internet-safety-and-your-child-with-autism/). Installing software such as NetDog Filter (http://www.netdogsoft.com), will block all porn websites in the background when your child is on the Internet and protect them from stumbling into pornography by accident. For young children, there is a Disney game called Surf Swell Island. It teaches basic safety rules and it is free

there is a Disney game called Surf Swell Island. It teaches basic safety rules and it is free to download at http://disney.go.com/surfswell/index.html. The questions are read out loud by the narrator, but the child has to be able to read and choose the answer. The child goes through four areas (Privacy Falls, Virus Cave, Temple of Tact, and Challenge of Doom). Other options are social networking sites specifically for individuals with autism (http://www.autismspeaks.org) such as:

networking sites specifically for individuals with autism (http://www.autismspeaks.org) such as: WeAreAutism.org – Share, talk, and communicate in a user-led social network for individuals.

family members, and those members of the com- munity. Share the wealth of your experience and plan for the future with those like you. Find others with similar interests and goals. WrongPlanet. net – Wrong Planet is a web community designed for individuals (and parents/professionals of those) with autism, Asperger’s syndrome, ADHD, PDDs, and other neurological differ- ences. They provide a discussion forum, where members communicate with each other; an article section, with exclusive articles

forum, where members communicate with each other; an article section, with exclusive articles and how-to guides; a blogging feature; and a chat room for real-time communication with other Aspies. AutismSpeaks. Ning.org – Autism Speaks Social Networking Site. This online community was created as a support forum for those affected by autism. WeAreAutism. org – Share, talk, and communicate in a user-led social network for individuals, family members and those members of the community. Share the

social network for individuals, family members and those members of the community. Share the wealth of your experience and plan for the future with those like you. Find others with similar inter- ests and goals. WrongPlanet.net – Wrong Planet is a web community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences. They provide a discus- sion forum, where members communicate with each other; an article

They provide a discus- sion forum, where members communicate with each other; an article section, with exclusive arti- cles and how-to guides; a blogging feature; and a chat room for real-time communication with other Aspies. AutismSpeaks.Ning.org – Autism Speaks Social Networking Site. This online community was created as a support forum for those affected by autism. Installing anti-virus software is critical for Internet security and safety. Some highly rated software used in removing

software is critical for Internet security and safety. Some highly rated software used in removing viruses, malware and spyware include: McAfee, F-Secure, Norton, Kaspersky, and TrendMicro.  The sense of the internal, physiological condition of the body and organs (Craig 2002). Interocep- tive signals arise from bodily tissues and organs such as the heart, lungs, GI tract, bladder, and skin. Sensing these interoceptive signals leads to the experience of body states such as pain, hunger,

Sensing these interoceptive signals leads to the experience of body states such as pain, hunger, satiety, thirst, elimination, and sexual arousal. Furthermore, awareness of these internal body signals leads to the clear detection of emotions including anxiety, frustration, and calmness. An intact interoceptive system is positively correlated with emotional regulation (e.g., Füstös et al. 2012), intuitive eating (e.g., Herbert and Pollatos 2012), typical pain response (e.g., Weiss et al. 2014),

eating (e.g., Herbert and Pollatos 2012), typical pain response (e.g., Weiss et al. 2014), self-awareness (e.g. Modinos et al. 2009; Tsakiris et al. 2007), intuitive decision-making (e.g., Bechara and Damasio 2005; Dunn et al. 2010; Gu and Fitzgerald 2014), and emotional perspective taking (e.g., Grynberg and Pollatos 2015; Singer et al. 2004).  Conversely, interoceptive differences are correlated with chal- lenges such as higher levels of depression and anxiety (Paulus and Stein 2010; Avery et

with chal- lenges such as higher levels of depression and anxiety (Paulus and Stein 2010; Avery et al. 2014). Interoceptive differences have been found in individuals with autism spectrum disorder (Fiene and Brownlow 2015; Garfinkel et al. 2016). Furthermore, the insula, the area of the brain that processes interoceptive information (Critchley et al. 2004), is commonly affected in individuals with ASD providing a brain-based explanation for the interoceptive differences reported by many

with ASD providing a brain-based explanation for the interoceptive differences reported by many individuals with ASD (Di Martino et al. 2009, 2014; Uddin et al. 2013; Dickstein et al. 2013; Nomi and Uddin 2015). Given that interoception influences many areas that are often affected in individuals with ASD such as emotional regula- tion (Laurent and Rubin 2004; Mazefsky et al. 2013, 2014; Samson et al. 2014, 2015), interoception is emerging as an important consid- eration and area of study within

al. 2014, 2015), interoception is emerging as an important consid- eration and area of study within the field of autism.  Interpersonal skill is a broad term used to denote all types of human social and emotional interac- tions with each other. It is encompassing indi- vidual’s capabilities to interact efficiently with peers and adults as well as their capabilities to form affective ties or social relationships in the form of attachment with a main caregiver, friendship with peers, and romantic

relationships in the form of attachment with a main caregiver, friendship with peers, and romantic relation- ships. Social interaction (SI) is defined as a reciprocal process in which children effectively initiate and respond to social stimuli presented by their peers or adults in diverse social settings and situations. Whereas, social interactions can be sporadic and include various individuals, social relationships inherently denote a mutual process of continuous interactions with a spe- cific

social relationships inherently denote a mutual process of continuous interactions with a spe- cific exclusive individual over a long period that enables the evolvement of affective bonding, closeness, and intimacy. Interpersonal interac- tions and skills are the basic unit of which social cognition (the understanding of self and others and the interaction between self and others) derives.  Interpersonal Supports are activities or strategies provided by peers, teachers, parents, and commu- nity

Supports are activities or strategies provided by peers, teachers, parents, and commu- nity members which increase students’ overall interpersonal skills for increased social interaction with one or more individuals. The tasks or skills to be targeted include joint attention, perspective taking, social and pretend play, social engage- ment, and social problem-solving (Luiselli et al. 2008). Interpersonal supports reflect the under- standing that fostering social communication is an integral part

supports reflect the under- standing that fostering social communication is an integral part of an individuals’ day and must occur across a variety of social partners. It is an extension of individual or small group support provided by professionals for generalization.  A key component of interpersonal supports is a shifting of emphasis away from the student to an emphasis on training and educating members of the students’ interactive day to effectively facil- itate appropriate social

educating members of the students’ interactive day to effectively facil- itate appropriate social interaction (Marans et al. in Volkmar et al. 2005).  Students with ASD have a natural interest in their age level peers; therefore, these peers become an important interpersonal support to the student with ASD. Peers who have received training to adjust their communication style and interaction with the student with ASD are effective at facilitating and increasing appro- priate interactions.

with the student with ASD are effective at facilitating and increasing appro- priate interactions. Research supports the use of peer-mediated interventions, including peer mentors in naturalistic settings. Examples which have been published include Peer Integrated Play Groups by Pamela Wolfberg (2003); Peer Buddy Skills Training by K English et al. (1997); and Peer implemented Pivotal Response Training by K. Pierce and Schreibman (1995, 1997) as cited in Volkmar et al. (2005). Additional

Training by K. Pierce and Schreibman (1995, 1997) as cited in Volkmar et al. (2005). Additional resources for implementation of peer mentor pro- grams may be found on the National Mentoring Resource Center website (https://www.national mentoringresourcecenter.org/index.php/what- works-in-mentoring/resources-for-mentoring-pro grams.html?id¼237).  Although teachers and parents may have extended knowledge and understanding of social communicative competency levels in students with ASD, they will

and understanding of social communicative competency levels in students with ASD, they will benefit from additional training and support regarding their own communicative style and its impact on fostering increased social communication in the student with ASD. Teachers and parents, through their daily interaction with students with ASD, will provide valuable interpersonal support for the development of social communicative compe- tency (Marans et al. in Volkmar 2005). An exam- ple program that

of social communicative compe- tency (Marans et al. in Volkmar 2005). An exam- ple program that has been designed to provide in depth training to parents and teachers is the Program for the Education and Enrichment of Relational Skills (PEERS) for Adolescents, for Adults, and for Preschoolers by Elizabeth Laugeson (2010). This program utilizes didactic instruction to guide parents toward understanding techniques that support conversational manage- ment skills.  Students with ASD will want to

techniques that support conversational manage- ment skills.  Students with ASD will want to participate in community-based activities which reflect their personal interests and preferences. In the outset of participation within these activities, it will be necessary for parents to provide primary support that allows their child to successfully engage in the community. However, it will be necessary to consider means of providing training to those members of the community that will likely engage

to consider means of providing training to those members of the community that will likely engage in interpersonal interaction with the indi- vidual with ASD. This training will need to include support strategies to foster and increase student social communicative competency within these community settings (Marans et al. in Volkmar 2005), such as core conversational management skills (eye contact, asking ques- tions, commenting, and body proximity). Addi- tionally, provisions under IDEA (2004)

asking ques- tions, commenting, and body proximity). Addi- tionally, provisions under IDEA (2004) require that all educators within the Pre-K to 12 school setting receive this type of training. While there is not a current policy requiring training at the college/university level, as a growing number of individuals with ASD attend college, it will be imperative to develop training for those who provide interpersonal support to students on campus that includes best methods to encourage use of

provide interpersonal support to students on campus that includes best methods to encourage use of expected skills of conversational manage- ment and social interaction.   increasing the social communicative competency of students with ASD by utilizing all of the mem- bers of their interpersonal circle to facilitate and foster positive social interaction that is engaging and reinforcing, and within multiple environ- ments. As a result, individuals with ASD who receive this support, will have a

multiple environ- ments. As a result, individuals with ASD who receive this support, will have a broader peer network that will lead to an increased social cap- itol, thus having a larger impact on successful outcomes.   Interventions aimed at increasing acceptance of new foods into the diet involve using a range of techniques based on exposure to foods, condi- tioning, and family training or environmental changes. Acceptance is a broad term that includes any behavior from willingness to try a

changes. Acceptance is a broad term that includes any behavior from willingness to try a new food (e.g., tasting, putting food in the mouth) to increasing the number of whole foods eaten by the individual. It is often a goal of these interventions to increase intake of foods from different food groups in order to ensure a variety in the diet. New foods can be identified as foods that are not usually eaten as part of the habitual diet. These food items, however, do not have to be novel because

eaten as part of the habitual diet. These food items, however, do not have to be novel because familiar foods, or foods that were previously accepted, can also often be refused.  Historical Background Autism as first described by Leo Kanner (1943) noted that feeding problems occur in many cases. These problems included food refusal, limited food repertoire, challenging behaviors around eat- ing, and a variety of unusual eating behaviors that were individual to each case. Since then, feeding

and a variety of unusual eating behaviors that were individual to each case. Since then, feeding problems have been estimated to be prevalent in up to 89% of children with autism (Ledford and Gast 2006), encompassing a vast range of atypical eating behaviors. Although feeding problems occur more frequently in children with autism than in typically developing peers, issues with eating are not necessary or sufficient for an autism diagnosis. It has therefore been proposed that factors associated

or sufficient for an autism diagnosis. It has therefore been proposed that factors associated with autism, such as insistence on sameness, social communication deficits at mealtimes, or sensory sensitivities, may either cause or affect the likelihood of food refusal and food selectivity.  The literature regarding treatment of feeding problems has previously addressed food refusal and challenging behaviors more comprehensively than other eating behaviors such as limited food repertoire (limited

behaviors more comprehensively than other eating behaviors such as limited food repertoire (limited dietary variety). This has led to a focus on food refusal only in clinical populations, where the problem has led to high levels of medical or psychological distress to the child or their family that it is deemed to warrant professional intervention (Dovey et al. 2009). This often includes conditions resulting in failure to thrive, growth faltering, or impact on cognitive development, usually as

resulting in failure to thrive, growth faltering, or impact on cognitive development, usually as a consequence of nutri- tional or energy deficiencies. Where necessary, treatment may be medical in nature (e.g., percuta- neous endoscopic gastrostomy (PEG) fed) to increase consumption of energy; however, the focus of many interventions to treat food refusal with the aim to increase intake of new foods has had a behavioral focus.  Historically, the goal of increasing acceptance of foods has been

has had a behavioral focus.  Historically, the goal of increasing acceptance of foods has been addressed using applied behav- ioral analysis (ABA) techniques such as that of operant conditioning (Riordan et al. 1980), including differential reinforcement of alterna- tive behaviors and escape extinction (including non-removal of the spoon). Forced feeding and overcorrection procedures have also been used previously to increase food intake and to correct unwanted eating behaviors. However, these

used previously to increase food intake and to correct unwanted eating behaviors. However, these punishment-based techniques are less frequently reported in the current literature and are only used clinically when other procedures have not been successful. Further techniques based on exposure, such as stimulus fading and demand fading, have also been developed as forms of systematic desensitization toward new foods. Yet despite these techniques being available, it was suggested in the late

toward new foods. Yet despite these techniques being available, it was suggested in the late 1990s that interventions using positive reinforcement are useful to increase acceptance of foods, while non-removal of the spoon may be useful to correct food refusal (Kerwin 1999). However, due to the heterogene- ity of the autism population, this conclusion has generally not been accepted, and the implemen- tation of interventions has become more individ- ualized to the needs of each individual child.

tation of interventions has become more individ- ualized to the needs of each individual child. Interventions are frequently tailored to specific causes of feeding problems, severity of feeding problems, and preferred outcomes in increasing acceptance of new foods.  In the last 20 years, the problems of food refusal and limited dietary variety have been collated with high-frequency intake of single food items under the broad term selective eating (Bandini et al. 2010). Selective eating acknowl-

food items under the broad term selective eating (Bandini et al. 2010). Selective eating acknowl- edges not only the wide range of eating behav- iors that are considered problematic but also feeding problems that occur in most children with autism and not only in clinical populations. Therefore, most children with autism could ben- efit from healthy eating interventions that intro- duce new foods. This assumption is a direct response to problems of nutritional deficiencies and overweight being

This assumption is a direct response to problems of nutritional deficiencies and overweight being highlighted in children with autism. Consequently, interventions that aim to increase acceptance of a variety of new foods have become a priority. However, although interventions generally succeed in the acquisition of appropriate feeding behaviors, in many cases the maintenance of these feeding behaviors has been much more difficult to achieve.  Rationale or Underlying Theory Interventions for

behaviors has been much more difficult to achieve.  Rationale or Underlying Theory Interventions for accepting new foods assume that many foods are already refused in the child’s diet due to selective eating. Accepting new foods attempts to address food selectivity by increasing the number of different foods that are eaten, as well as the amount of each new food eaten. It is thought that a variety of attributes in a child with autism could lead to selective eating, including unfamil- iarity

of attributes in a child with autism could lead to selective eating, including unfamil- iarity (food neophobia), sensory sensitivity (or tactile defensiveness), fear or previous food experiences (e.g., choking), sensitivity to food stimuli (color, shape, smell, taste, temperature, etc.), biological food intolerance, repetitive behav- iors, gastrointestinal problems (e.g., constipation, reflux), and food allergy (Sharp and Postorino 2017). While this list is not exhaustive, it aims to highlight

food allergy (Sharp and Postorino 2017). While this list is not exhaustive, it aims to highlight the heterogeneity of the population, which is reflected in the range of interventions available to attempt to treat food selectivity, based on individual needs.  In addition to child-specific traits, parental anx- iety and unintentional reinforcement of non- preferred behaviors have also been suggested to maintain selective eating behaviors in the child. This may include preparing special meals for

to maintain selective eating behaviors in the child. This may include preparing special meals for the child that differ from that of the rest of the family or removing the child from the eating situation if they display challenging behaviors (e.g., tan- trums, throwing food, holding food in the mouth, etc.). Regardless of the underlying cause of selective eating, all interventions to increase acceptance of new foods consider the problem as a behavior that can be altered.  Goals and Objectives

of new foods consider the problem as a behavior that can be altered.  Goals and Objectives Treating food selectivity aims to address the effects of selective eating more often than its causes. The effects that are targeted include increasing variety in the limited diet, reducing the amount of foods that are refused, and increas- ing the volume of non-preferred foods that are consumed. Studies often have secondary goals to reduce any challenging behaviors during feeding occasions. Likewise,

often have secondary goals to reduce any challenging behaviors during feeding occasions. Likewise, changing parental feeding behaviors may also be an appropriate goal in order to provide structure to mealtimes, although this is usually measured in relation to the child’s eating behavior, rather than the parent’s feeding behaviors.  The causes of food selectivity can also be addressed, but this is not usually explicitly reported in the literature. For example, sensory sensitivities may be

is not usually explicitly reported in the literature. For example, sensory sensitivities may be decreased through multiple exposures to target foods, and therefore desensitization to the food stimulus occurs. These goals are not only relevant to psychological practice when a child presents with a feeding problem, but also for par- ents that have difficulty encouraging their child to eat certain foods and in educational settings where children’s consumption of foods may also be limited.

foods and in educational settings where children’s consumption of foods may also be limited.  Treatment Participants All children, whether typically developing or diagnosed with autism, can benefit from an inter- vention that promotes eating a wider variety of foods and therefore, a healthier and more balanced diet. However in autism, the type of intervention delivered will depend on the individual case and their hypothesized cause of selectivity, what spe- cific behaviors will be a target for

case and their hypothesized cause of selectivity, what spe- cific behaviors will be a target for change, and the severity of their selectivity. Although very little research has been conducted specifically to com- pare severities of selective eating, it is thought that severity will affect many aspects of treatment and its outcomes. Due to a more restricted diet, severely selective eaters might first need to increase their intake of a select few target foods before trying new foods and increasing

need to increase their intake of a select few target foods before trying new foods and increasing variety, whereas it could be more appropriate for mildly selective eaters to increase acceptance for a vari- ety of new foods, since these children already eat a wider variety of foods than severely selective eaters.  In addition to severity, age is a particular con- cern for when to intervene. Current research would suggest an early intervention for a better prognosis (e.g., 2–8 years old), as

research would suggest an early intervention for a better prognosis (e.g., 2–8 years old), as food selectivity in autism is a stable trait that continues into ado- lescence (Bandini et al. 2017). Therefore, early intervention that promotes acceptance of a range of new foods is preferred as this behavior will be more likely to continue into adolescence if it is established first in childhood. Although it is suggested that eating behaviors are more difficult to change as the child gets older, a few

it is suggested that eating behaviors are more difficult to change as the child gets older, a few case studies have reported positive changes in young adults after intervention. Additionally, when targeting the eating behavior of children, parental training is often a large part of delivering an inter- vention because parents will be the people feeding the child after the intervention finishes. Therefore, the parent must be willing and cooperative in order to learn the techniques that are

Therefore, the parent must be willing and cooperative in order to learn the techniques that are successful at encouraging their child to accept new foods.  Lastly, despite most intervention research being conducted in children with autism, children targeted by feeding interventions to increase acceptance of new foods need not have a diagno- sis of autism. Similar positive outcomes have been observed in children with other neurodeve- lopmental diagnoses including learning disability or

observed in children with other neurodeve- lopmental diagnoses including learning disability or developmental delay. If treatments are tailored to the individual’s needs, then factors such as diagnosis and additional needs (e.g., communica- tion ability) may be a barrier to an intervention having success, but will not necessarily make the individual unlikely to benefit from intervention.  Treatment Procedures For increasing acceptance of new foods, three main categories of intervention have been

Procedures For increasing acceptance of new foods, three main categories of intervention have been identi- fied based on exposure to food, conditioning tech- niques, and methods including family training or environmental changes (Chawner et al. 2019). Each of these groups of intervention has an array of techniques that can be used to increase accep- tance of new foods (Table 1). The unique qualities of each category of intervention are determined by its explanation for the eating problem

qualities of each category of intervention are determined by its explanation for the eating problem behavior. Lack of experience or physical sensitivity to food can be addressed by exposure techniques; how- ever, a more complex relationship with the food may need to be addressed with reinforcers and punishments (e.g., removal of a reward) as moti- vation to eat the food. Lastly, eating problems may stem from, or be maintained by, the environment. Therefore, changing aspects of the environment

may stem from, or be maintained by, the environment. Therefore, changing aspects of the environment or training parents to change how feeding occurs can be useful. Most often, successful interventions will utilize a combination of these techniques.  Most research using these techniques imple- ment them in controlled clinical settings. Less studies have implemented interventions in the home and even fewer have attempted school set- tings. However, as the setting changes, so does the role of the

fewer have attempted school set- tings. However, as the setting changes, so does the role of the treatment provider. In the clinic, the treatment provider as the therapist has a role to assess the problem, plan an intervention, and change this plan if it does not work, whereas in the home setting, the professional will often train parents to carry out procedures in the hope that parental practices can continue to have positive effects after the intervention finishes. Ideally, all interventions

can continue to have positive effects after the intervention finishes. Ideally, all interventions designed to increase acceptance of foods in children should have parental involve- ment (Ledford et al. 2018). In this case, the treat- ment provider has a duty to ensure that parents are implementing the procedures correctly and safely, while not inadvertently causing any unwanted behaviors or outcomes.  Additionally, most interventions have been carried out only with individual children on a

Additionally, most interventions have been carried out only with individual children on a one-to-one basis. There is very little evidence for implementing interventions in groups due to the individuality of needs and the specific problem that is being addressed, as this will be different for different children. However, some research has reported delivering exposure interventions and environmental changes in schools or cafete- rias to groups of children. These interventions make appropriate use

changes in schools or cafete- rias to groups of children. These interventions make appropriate use of nonclinical settings, so severity of food selectivity is likely to be milder and exposure to new foods may produce preferred changes in behavior. It is also unlikely that expo- sure techniques alone will have adverse effects on children’s eating behavior, unlike the potential adverse effects associated with using more intensive interventions incorrectly (e.g., escape extinction). Therefore,

with using more intensive interventions incorrectly (e.g., escape extinction). Therefore, these types of intervention are more appropriate for nonclinicians to imple- ment safely to groups of children. Furthermore, duration and frequency of the interventions are also very varied. Frequency can differ between one or two times per week or be as intense as three times per day. Duration has also been reported from 2 sessions to over 200 ses- sions, with some interventions lasting anywhere from a

reported from 2 sessions to over 200 ses- sions, with some interventions lasting anywhere from a few days to over 6 months. Each session length is also variable. Although there appears to be no standard for time, this massive range of durations and frequency of session can be explained by the variety of different interventions used, severity and causes of selective eating, behaviors that are targeted to be changed, and clinician time. It is often not reported whether the intervention stops

targeted to be changed, and clinician time. It is often not reported whether the intervention stops because the target outcome has been achieved. Therefore, there is no guaran- tee that a shorter, more intense intervention will have preferred effects, nor a longer and slightly less intense intervention. Consequently, interven- tions are tailored to the individual rather than following a specific standard course of interven- tion to increase acceptance of new foods.  Interventions for Increasing

course of interven- tion to increase acceptance of new foods.  Interventions for Increasing Acceptance of New Foods, Table 1 A description of intervention techniques used to

increase the acceptance of new foods | Method/intervention | Description |

| Description | |:------------------------------------|:------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

participants and was one of the earliest demon-strations of lag schedules utilized with people.

### Current Knowledge  Inflexible adherence to routines and engaging in repetitive patterns of behaviors, interests, or activ-ities are some of the hallmark characteristics of ASD. Research indicates that children with ASD respond in ways that do not maximize reinforce-ment when compared to similarly aged children who are not on the autism spectrum. Instead, children with ASD tended to repeat or stay within a subset of choices rather than sample all of the offered choices leading to

repeat or stay within a subset of choices rather than sample all of the offered choices leading to reinforcement. With the increase in developing interventions and strate-gies for individuals with ASD and fundamental need to increase response variability for this pop-ulation, the application of lag schedules has led to an explosion of research in more applied contexts and settings within recent years. Behavioral therapists should focus on improving response variability because response

recent years. Behavioral therapists should focus on improving response variability because response variability can be functional and adaptive. For example, response variability can aid in problem-solving. When the typical response is not sufficient to solve a problem, the person may be required to try other potential solutions rather than engaging in the same behavior repeatedly. Creativity is another example of when variability might be beneficial. Creativity may be conceptu-alized as novel

another example of when variability might be beneficial. Creativity may be conceptu-alized as novel responses that deviate from the status quo. Finally, a fundamental component in behavior-shaping procedures (i.e., new behaviors or skills are taught by reinforcing approximations of behaviors until the final target behavior is reached) requires a person to provide variations of the target response. If the person does not offer different approximations, reinforcement criterion will not be met, and

If the person does not offer different approximations, reinforcement criterion will not be met, and shaping will not be success-ful. Behavior that is seemingly unpredictable or variable has traditionally been thought to be an uncontrollable or an internal characteristic to human nature. However, recent behavioral research indicates that behavioral variability could be an operant characteristic of behavior. In other words, variability of behavior can be increased, maintained, or decreased

of behavior. In other words, variability of behavior can be increased, maintained, or decreased through the environmental contingencies of reinforcement and extinction (Page and Neuringer 1985). This could be significant in developing effective inter-ventions for individuals on the autism spectrum.

Lag schedules are one way to improve behav-ioral variability and only recently begun to be studied in applied contexts. Most of the studies focused on individuals with ASD and lag sched-ules are centered around testing the feasibility of lag schedules with various skills. Researchers have explored increasing response variability with people in toy play (Baruni et al. 2014; Lang et al. 2014), verbal responding to social questions such as “What do you like to do?” or “How are you?” (Lee et al.

responding to social questions such as “What do you like to do?” or “How are you?” (Lee et al. 2002; Lee and Sturmey 2006; Susa and Schlinger Jr 2012), building verbal tacting or intraverbal repertoires (Contreras and Betz 2016; Heldt and Schlinger 2012), increasing vocaliza-tions for children with little echoic responding (Esch et al. 2009; Koehler-Platten et al. 2013), using sign language to mand (Silbaugh and Falcomata 2019), functional communication training (FCT; Adami et al. 2017;

to mand (Silbaugh and Falcomata 2019), functional communication training (FCT; Adami et al. 2017; Falcomata et al. 2018; Muething et al. 2018), and improving feeding for children with limited food repertoires (Silbaugh et al. 2017). Many of the current studies to date have dem-onstrated the use of fairly low lag schedules (i.e., Lag 1 to Lag 3) with people with ASD. For most of the participants, these simple lag schedules have been sufficient for increasing var-iability in responding. However,

these simple lag schedules have been sufficient for increasing var-iability in responding. However, some partici-pants required additional prompting in order to see increased variability. There is no consensus among researchers as to who would benefit from lag schedules and who would require the addi-tional supports.

There may be some situations in which the general socially acceptable response would be to respond in a variety of ways but other times in which repeated behavior would be warranted. For instance, if two people meet for the first time, it would be socially acceptable to introduce them-selves or ask the other person’s name the first or even second time upon meeting. However, after multiple meetings, it might be frowned upon to continue to ask the other person what their name is. Another context

it might be frowned upon to continue to ask the other person what their name is. Another context in which varied behavior is more accepted is joke telling. A person generally finds a joke funny the first time the joke teller says the punchline, but may not find it funny if the joke teller repeats the joke a second or third time. It could even be that the social acceptance for the joke teller tends to wane. In contrast, there are situations in which repeated behavior might be more beneficial than

to wane. In contrast, there are situations in which repeated behavior might be more beneficial than varied behavior. There is no shortage of successful people who value their morning rituals or routines to set the day, for example. Habits are behaviors that are so repeated or perfected they are nearly automatic, such that a person does not need to dedicate the mental capac-ity to engage in the behavior and can instead focus on other important decisions. A professional ath-lete’s success may

behavior and can instead focus on other important decisions. A professional ath-lete’s success may hinge on their ability to repeat-edly perform at a high level, under considerable pressure. Therefore, the advantages of variability and repeated behaviors may be contextually dependent. Scientists in the basic behavioral sci-ences have demonstrated that variability may be brought under stimulus control in which a stimu-lus is paired with the lag schedule to increase variability. When the stimulus

in which a stimu-lus is paired with the lag schedule to increase variability. When the stimulus (colored cue card) is present and the lag schedule in play, the subject offers varied responding, whereas when a differ-ent stimulus is presented and a non-lag schedule used, the subject returns to less varied responding. While this type of responding has been shown to occur also with individuals with ASD, the cues have been obvious and contrived. A more natu-rally occurring clinical application for

ASD, the cues have been obvious and contrived. A more natu-rally occurring clinical application for stimulus control with lag schedules has not been reported.

### Future Directions  Since the majority of applied research on lag schedules have been conducted in the last decade, current results are promising but continue to be limited in our understanding to the clinical use of lag schedules with individuals with ASD. Much of the current research with human populations have been translational in nature, as researchers try to use what is currently known from basic behavioral research and understand how lag schedules might be applied to people.

known from basic behavioral research and understand how lag schedules might be applied to people. Therefore, researchers may continue to focus on how to develop lag schedules specifically to improve people’s lives.

### Parameters of Lag Schedules in Applied Settings  Although there seems to be some indication of potential clinical utility to using lag schedules with individuals on the autism spectrum, ques-tions about the parameters of this schedule of reinforcement remain. For instance, in some stud-ies with human participants, the lag contingency was removed and variability of behaviors contin-ued. In other cases, lack of variability returned when lag schedules were removed. Future research might

In other cases, lack of variability returned when lag schedules were removed. Future research might explore the durability of varied behavior when lag schedules are used. While we hope that a person could learn to vary their behav-iors in contexts in which varied behavior benefits him or her, does a lag schedule of reinforcement need to always be in effect to do so? At what point could a more natural, less stringent intermittent schedule be utilized and still maintain variability? Research in

less stringent intermittent schedule be utilized and still maintain variability? Research in applied settings have mainly uti-lized smaller lag schedules (e.g., Lag 5 or less). It would be beneficial to know whether there is any advantage to using higher lag schedules (e.g., Lag 10). For instance, although Lag 50 has been used with pigeons, it may not be clinically advan-tageous or even feasible to use such a large lag schedule with human populations. Preliminary results by Falcomata et al.

to use such a large lag schedule with human populations. Preliminary results by Falcomata et al. (2018) indicate that there could be “ceiling effects” in which there is not a substantial variability improvement with higher lag schedules. This is an area that requires future research.

### Social Validity of Lag Schedules  With applied research, procedures that are feasible or efficient also require social acceptability in their use. In the development of lag schedule applications, researchers should define guidelines for determining the level of variability that is socially desirable and appropriate when using lag schedules. Of the various methods for improv-ing variability (e.g., extinction, percentile sched-ules, reinforcing novel behaviors), researchers should outline the

extinction, percentile sched-ules, reinforcing novel behaviors), researchers should outline the benefits and drawbacks to using lag schedules over other methods. In addi-tion, most, if not all lag schedule research to date, has been conducted by researchers as implemen-ters. A logical step for future research might be to understand how caregivers, clinicians, or teachers could effectively utilize lag schedules in various settings such as in a home or school/classroom setting.

### Prerequisite Repertoires for Using Lag Schedules  When using lag schedules, responses are reinforced if they are different from a set number of preceding responses. Because this “window” is always changing as responses are offered, smaller lag schedules (e.g., Lag 1 or Lag 2) have resulted in the potential drawback of “higher-order stereo-typy” in which the same few responses are given to meet the lag criterion. For example, on a lag 1 schedule, two responses could be alternated repeatedly

the lag criterion. For example, on a lag 1 schedule, two responses could be alternated repeatedly and still result in reinforcement. While variability would be achieved, this level of variability may not be sufficient. Therefore, alter-native lag schedules (e.g., lag-lag schedules, progressive vs. fixed lag schedules) that avoid higher-order stereotypy might be developed. Alternatively, larger lag schedules (e.g., Lag 5 or more) require a larger repertoire of responses to develop this window of

schedules (e.g., Lag 5 or more) require a larger repertoire of responses to develop this window of responses. However, we do not have information on how large these repertoires need to be for lag schedules to be successful. Finally, there are questions about how lag schedules affect novel behaviors. Current research indicates that lag schedules have pro-moted novel responding, but these results have been inconsistent among participants. Therefore, researchers should not only explore strategies

been inconsistent among participants. Therefore, researchers should not only explore strategies to consistently increase novel responding but also begin to understand the behavioral repertoire and participant characteristics that make novel responding more likely.

### Package Interventions Using Lag Schedules  When therapists develop an intervention or clinical therapy plan for clients, they often include multiple interventions or strategies as part of a multicomponent package to affect targeted behav-iors. Schedules of reinforcement might be just one of the considerations in the intervention plan. While most of the current research has revolved around the basic feasibility of using lag schedules with human populations, as research in lag sched-ules

the basic feasibility of using lag schedules with human populations, as research in lag sched-ules continues to move forward, it will be impor-tant to understand the role lag schedules might play when combined with other intervention strat-egies. Are lag schedules effective when part of an intervention package? Could lag schedules enhance other interventions or vice versa? Or do they inhibit results? For example, in previous research, some participants required additional prompting to the lag

For example, in previous research, some participants required additional prompting to the lag schedules utilized before seeing improved variability.

Lamotrigine is an anticonvulsant. It works by inhibiting voltage-activated sodium channels, antagonizes N-type calcium channels, and also has antiglutamatergic action. The anti-glutaminergic effect is thought to be through inhibition of sodium, calcium, and potassium channels leading to decreased release of the excitatory amino acid glutamate. While there are studies to show potential favorable effects on cognition and mood stabilization, there is currently insufficient evidence to support the

effects on cognition and mood stabilization, there is currently insufficient evidence to support the use of lamotrigine in Autism Spectrum Disorder.

Language may be defined as a representational rule-based system of arbitrary symbols used to convey information among members of a shared language community. Language symbols may be spoken, written, or signed and may be combined and recombined in ways that enable speakers to convey an infinite number of thoughts, feelings, and ideas. Frith and Happe (1994) distinguish language and communication; we can communicate with others without recourse to a rule-based language system through our

we can communicate with others without recourse to a rule-based language system through our gestures, facial expressions, eye gaze, or other actions. Similarly, an individual may pos-sess the words and grammar of his language com-munity but still struggle to communicate. Within ASD, communication disorders are universal, while language impairments are extremely variable (Tager-Flusberg et al. 2005). Language is a system of five component parts. Although these may be studied separately, in

2005). Language is a system of five component parts. Although these may be studied separately, in reality, they are highly interactive. Phonology refers to the sounds of speech and more specif-ically to the rules that govern combining speech sounds to form meaningfully distinct words. Phonemes are the minimal units that can differ-entiate meaning; for example, changing the pho-neme /f/ in “phone” to a /t/ creates a new word with a distinct meaning, “tone.” Semantics refers to word meaning and is

a /t/ creates a new word with a distinct meaning, “tone.” Semantics refers to word meaning and is related to vocabulary. However, semantics is more than a simple store of known words. Semantics also considers how words are connected within the lexicon; for example, understanding metaphorical expressions such as “that lawyer is a shark” requires not only knowledge of lawyers and sharks but also an understanding of the subtle features that are shared between these two seem-ingly distinct

also an understanding of the subtle features that are shared between these two seem-ingly distinct entities. Morphology refers to the prefixes and suffixes added to words that modify meaning. For instance, adding “un” to “happy” creates a distinct word which means the exact opposite of happy. Morphemes may also signal grammatical tense; “-ed” added to the end of many verbs will indicate an activity that happened in the past. Syntax, or grammar, is a set of hierar-chical rules that govern word

that happened in the past. Syntax, or grammar, is a set of hierar-chical rules that govern word combinations and sentences. For example, the sentence “the boy was kissed by the girl” cannot be understood by word order alone (i.e., “boy kissed girl”) but requires appreciation of “passive” voice so that the girl may be correctly identified as the agent of the action kiss. As noted earlier, mastery of phonol-ogy, semantics, morphology, and syntax does not guarantee communication. For instance,

of phonol-ogy, semantics, morphology, and syntax does not guarantee communication. For instance, sentences such as “the fish is on the table” have multiple meanings, and the intended meaning may only be clear when nonlinguistic contextual factors are taken into account. Pragmatics refers to this use of language in context. Pragmatic abilities require interlocutors to integrate linguistic information with a variety of other factors, including general knowledge, nonverbal cues, and shared

with a variety of other factors, including general knowledge, nonverbal cues, and shared knowl-edge between speakers. Because pragmatics fre-quently relies on understanding the internal states of communication partners, this aspect of lan-guage presents particular challenges to individuals with ASD.

## Language Acquisition  ### Definition  Language acquisition is a process that includes the perception and understanding of language, as well as the meaningful use of it. It is generally concep-tualized as referring to the initial mastery of lan-guage occurring in infancy rather than the second language learning that can occur later in child-hood or adolescence. Language acquisition progresses through a number of stages, starting very young in infancy. Particularly in the early stages of

through a number of stages, starting very young in infancy. Particularly in the early stages of language acqui-sition, a distinction can be made between recep-tive and expressive language. Although these domains of development progress at slightly dif-ferent rates early in life, the excessive divergence of these areas can be a marker of atypical devel-opment. The first task of infants is to master the sound structure used in their native language; they are born with the ability to differentiate

the sound structure used in their native language; they are born with the ability to differentiate all pho-nemes used in human language. Toward the first birthday, however, through “perceptual nar-rowing,” the infant loses the ability to perceive phonemes that are not used in their native lan-guage. During this same time period, the infant is learning to parse the sounds that they hear into predictable “chunks,” a strategy which will even-tually support their learning of words. The next phase of

“chunks,” a strategy which will even-tually support their learning of words. The next phase of language acquisition is the mastery of words, both receptively and expres-sively. Children begin to understand the meanings of words sometime around 10–12 months, and they begin to produce them shortly thereafter. First words are similar to the world around, and they generally refer to the most important aspects of the infant’s world: caregivers, favorite foods, games, etc. The child progresses to

aspects of the infant’s world: caregivers, favorite foods, games, etc. The child progresses to multiple word phrases and then to complex sentences; this tran-sition requires the mastery of syntax and grammar. Along with these vocabulary and structural advancements comes a greater proficiency with the pragmatics – or social usage – of language. For most individuals, language refers to verbal utterances. However, those individuals who learn a gestural language follow largely the same pat-tern of

However, those individuals who learn a gestural language follow largely the same pat-tern of development. Furthermore, starting at least in early childhood, and certainly by adulthood, all language whether first or second, verbal or gestural is processed predominantly in the left cerebral hemisphere.

Although the timeline of language acquisition has long been known, the mechanisms by which it proceeds remain up for debate. A variety of argu-ments have been made to explain the rapid devel-opments over the first few years of life. The behaviorist account was one of the earliest accounts for the emergence of language. This account was rooted in the observations made about general principles of learning and suggested that language was taught to infants much the same way that they learned any

learning and suggested that language was taught to infants much the same way that they learned any other skill: through positive and negative reinforcement. This pro-posal has largely fallen out of favor, although the idea that language learning is the product of gen-eral learning mechanisms is still a primary argu-ment in these ongoing discussions. In contrast, the nativist hypothesis proposes that the capacity for language is a product of an inborn cognitive “module.” By this account,

that the capacity for language is a product of an inborn cognitive “module.” By this account, language learning is the product of a specialized cognitive structure. A hybrid account is more widely accepted today and emphasizes the importance of both inborn predisposition and environmental input in the attainment of language.

### See Also  *   Communicative Acquisition in ASD *   Language *   Normal Language Development *   Speech  ## Language Acquisition Device  ### Synonyms  LAD; Language organ  ### Definition  The Language Acquisition Device, or LAD, was proposed by psycholinguist Noam Chomsky as the device or organ within the brain which houses human’s innate ability to acquire and produce language. Stemming from the nativist theory which asserts that certain skills innately exist in humans, the LAD is thus in

the nativist theory which asserts that certain skills innately exist in humans, the LAD is thus in direct opposition with the behaviorist theory which suggests skills are attained through learning and reinforcement. According to Chomsky, the LAD is held respon-sible for allowing children to derive syntactic structure and rules from their native language through multiple stages of hypothesis testing. Through this process, the LAD transforms gener-alizations of speech and language into basic

Through this process, the LAD transforms gener-alizations of speech and language into basic gram-mar. This hypothetical structure helps explain the immense surge in language ability in toddlerhood, but it is unavailable after an unspecified critical period of development. The LAD is a theoretical construct, and there-fore its relationship to language acquisition in Autism Spectrum Disorder has not been specifi-cally tested.

### See Also  *   Language Acquisition  ## Language Barriers Impact on Access to Services  ### Definition  A “language barrier” constitutes difficulty or inability for two or more people to communicate because they speak different languages. It has been shown that language barriers among parents of children diagnosed with autism spectrum disorder (ASD) have a negative impact on the child’s access to and optimization of healthcare and educational services (St. Amant et al. 2017).

Data collected in a large, urban area of California suggest that children of parents whose primary language was English were significantly more likely to have both social skills and communication goals included in their individualized education plan (IEP) com-pared to children of parents whose primary language was not English. Additionally, chil-dren of primary English speakers received sig-nificantly more hours of direct services from their state disability program. These data were significant

more hours of direct services from their state disability program. These data were significant despite controlling for demographic covariates such as ethnicity, race, age, and gender. It is doubtful that these disparities in access to ASD services solely represent differences in the variable profile of ASD across primary language. Instead, they most likely reflect the heightened challenge faced by parents whose primary language is not English to advocate for specific and appropriate healthcare and

whose primary language is not English to advocate for specific and appropriate healthcare and educational services for their child despite this being encour-aged by IDEA parts B and C. Many studies support these and related find-ings, suggesting that acculturation factors such as primary language, ethnicity, and race play a significant role in access to services for children with ASD (Liptak et al. 2008). A systematic review article recently published by Singh and Bunyak (2019) identified three

2008). A systematic review article recently published by Singh and Bunyak (2019) identified three interdependent themes that contribute to accessing appropriate ASD diagnoses and services including familial, cultural, and structural barriers, of which language barriers were found to compound the effects of cultural beliefs on access to services by negatively impacting the process of obtaining an ASD diag-nosis. Further, Zuckerman, Mattox et al. (2014) were able to identify a recurring

an ASD diag-nosis. Further, Zuckerman, Mattox et al. (2014) were able to identify a recurring association between racial, ethnic, and language disabilities and the ability to access ASD diagnosis and services.

It is critically important to analyze accultura-tion factors impacting access to services for children with ASD because it is well-documented that intensive therapeutic and behavioral services result in better outcomes for these children (Reed et al. 2007). Publicly funded, state disability programs play an integral role in improving outcomes for children with ASD, with a large majority of families confirming that the support their child received made a positive difference in their family’s

confirming that the support their child received made a positive difference in their family’s life according to the National Core Indicators Child Family Survey in 2013. Furthermore, IEPs are inherently designed to be specific and appropriate for a child with special needs, and while ASD represents a continuum of social and behavioral impairments, it is reason-able to conclude that an IEP designed for the needs of a child with ASD would include goals focused on social and communication skills,

for the needs of a child with ASD would include goals focused on social and communication skills, because one of the core diagnostic criteria of ASD is persistent deficits in social communi-cation and social interaction. The conclusion that language barriers significantly impact the likelihood that these ASD-specific goals are included in IEPs therefore likely represents true inequity in access to services (St. Amant et al. 2017). According to the National Institute of Medicine, one of the six

services (St. Amant et al. 2017). According to the National Institute of Medicine, one of the six aims for improving healthcare is equity. It is therefore a matter of public health to acknowledge and understand the origin of differences in service access in order to adequately address this fundamental problem.

### See Also  *   Bias in Assessment Instruments for Autism *   Education *   Service Utilization in Autism *   Social Class and Autism  ## Language Comprehension  *   ▶Verbal Comprehension  ## Language Comprehension Disorder/Impairment/ Disability  *   ▶Receptive Language Disorders  ## Language Cortex  *   ▶Cortical Language Areas  ## Language Development Survey  ### Synonyms  LDS  ### Description  The Language Development Survey (LDS) is a widely used screening instrument, developed by

The Language Development Survey (LDS) is a widely used screening instrument, developed by Leslie Rescorla, that obtains parent report of a child’s expressive vocabulary and beginning word combinations. The LDS includes 310 words orga-nized within 14 semantic categories (e.g., toys, body parts, food, animals, people). High-frequency words (e.g., “more”) as well as less common words (e.g., “hamburger”) are provided on the list. Lexical chunks (e.g., “all gone,” “night night,” “Sesame Street”)

are provided on the list. Lexical chunks (e.g., “all gone,” “night night,” “Sesame Street”) are also listed on the LDS. When complet-ing the LDS, parents are asked to indicate words on the list that their child spontaneously produces but also are allowed to add additional words spoken by the child. Parents may indicate words that the child produces in other languages by circling the English word on the list and writing the first letter of the language in which the child produces the word (e.g.,

on the list and writing the first letter of the language in which the child produces the word (e.g., circle “water” and write S if the child says “agua” in Spanish). Words on the list also may be circled if the child mispronounces the words or says it in “baby talk” (e.g., “baba” for bottle). In addition to identifying words that the child can produce, parents are asked if the child combines words and, if so, are asked to provide five examples of the child’s best and longest sentences, from which

and, if so, are asked to provide five examples of the child’s best and longest sentences, from which mean length of utterance (MLU) can be calculated. Only expressive language abilities are assessed on the LDS.

The LDS is designed to be a screening instru-ment for language delays. It collects information regarding possible risk factors for language delays (e.g., history of ear infections, whether the parent is concerned about the child’s language development, family history of delayed language development). Furthermore, norms for ages 18–35 months can be used to indicate whether a child’s vocabulary and word combinations are delayed. The normative information provided for ages 18–35 also can be used

word combinations are delayed. The normative information provided for ages 18–35 also can be used for children with language delays who are older than the normative sample. The use of the LDS as a screening tool is efficient because it can typically be completed in approximately 10 min. Instructions are written on each scoring sheet and do not require additional explanation; however, it could be argued that a more detailed description of spontaneous word production could be provided. In

be argued that a more detailed description of spontaneous word production could be provided. In addition, the LDS is written at a fifth-grade reading level (Achenbach 2011), making it a user-friendly tool for adults with differing abilities.

Gender-specific norms are available for ages 18–23, 24–29, and 30–35 months. Scores at or below the 15th percentile indicate delayed vocab-ulary development (Achenbach 2011). The com-monly accepted cut point for identifying children at risk for language delay has been less than 50 words or no word combinations at 24 months of age (Rescorla 1989); thus, the survey is often administered at this age. This cut point identifies approximately 10% of toddlers in the general population. In order to

age. This cut point identifies approximately 10% of toddlers in the general population. In order to score the LDS, the total number of words circled and written in by the parents is counted. Total number of words from each semantic category can also be counted to provide more spe-cific information about the child’s lexical knowl-edge. In addition, if the child is combining words, clinicians can estimate MLU from the example sentences provided by the parent. Normative infor-mation for average

estimate MLU from the example sentences provided by the parent. Normative infor-mation for average phrase length is provided only for ages 24–29 and 30–35 months. MLU scores falling below the 20th percentile suggest delayed phrase development (Achenbach 2011). The LDS is included in the Child Behavior Checklist for ages 1½ to 5 (CBCL/1½ to 5/LDS) in both English and a Latino Spanish language version. Translations in other languages are also available. Studies reporting findings for Latino

version. Translations in other languages are also available. Studies reporting findings for Latino children have been published (e.g., Patterson 1998; Seltzer 1995).

### Historical Background  The LDS was created to provide a quick, reliable, and valid screening of vocabulary development in young children. The development of the LDS was based on previous studies utilizing language dia-ries kept by mothers and other studies assessing parent report of vocabulary (e.g., Benedict 1979). Revisions with lengths ranging from 240 to 353 words have been evaluated (Rescorla 1989) to obtain the final version with 310 words orga-nized under 14 semantic domains. Over

1989) to obtain the final version with 310 words orga-nized under 14 semantic domains. Over 1500 parents of toddlers ranging from 18 to 35 months (primarily between 24 and 30 months) varying in ethnicity and SES have completed the LDS in private pediatric clinics, inner-city hospitals, day-care centers, family homes, and by mail (e.g., Klee et al. 1998, 2000; Rescorla 1989, 2005).

### Psychometric Data  Reliability and validity data for the LDS have been reported in numerous studies. Rescorla (1989) reported 1-week test-retest reliability and Cronbach’s alpha internal consistency of .99. LDS test-retest reliabilities of .97 for vocabulary score and .87 for mean length of phrases were found when mothers completed the LDS twice an aver-age of 23 days apart (Rescorla and Alley 2001). Correlations between LDS vocabulary scores and numbers of objects and pictures named on

2001). Correlations between LDS vocabulary scores and numbers of objects and pictures named on various tests have ranged from .72 to .87 (Klee et al. 1998; Rescorla 1989; Rescorla and Alley 2001; Rescorla et al. 1993). Also, LDS vocabulary scores have been found to highly correlate with other standard measures including the Bayley Mental Development Index (r ¼ .79; Bayley 1969), the Reynell Receptive Language Scale (r ¼ .56) and the Reynell Expressive Language Scale (r ¼ .78; Reynell and Gruber

Language Scale (r ¼ .56) and the Reynell Expressive Language Scale (r ¼ .78; Reynell and Gruber 1985), and the Vineland Adaptive Behavior Scales (composite scores r ¼ .71; Sparrow et al. 1984) (Rescorla and Alley 2001). High levels of sensitivity and specificity also have been reported in several studies (Klee et al. 1998; Rescorla 1989; Rescorla and Alley 2001; Rescorla et al. 1993), indicating validation of LDS cut points for language delay. Despite this, it has been suggested that the LDS

validation of LDS cut points for language delay. Despite this, it has been suggested that the LDS yields a rather high false-positive rate (Klee et al. 1998). When com-pared to cutoff z-scores from the Reynell Expres-sive Language Scale, the cut point for language delay on the LDS was found to have a sensitivity score of 95% and specificity of 67% (Rescorla and Alley 2001). Therefore, a revised criterion to indi-cate delayed language has been suggested in an effort to reduce false positives.

criterion to indi-cate delayed language has been suggested in an effort to reduce false positives. Klee et al. (2000) suggest using a cut point of fewer than 50 words or no word combinations and either six or more ear infections within the first 2 years of life or parental concerns about the child’s language development for 24-month olds.

Rescorla and colleagues (2005) have com-pared the content validity of the LDS to the MacArthur-Bates Communicative Development Inventory: Words and Sentences Scales (MCDI-WS; Fenson et al. 1993) by having parents of over 290 typically developing toddlers complete both test protocols. At 680 words, the MCDI-WS is a longer instrument and more time consuming to complete than the LDS. However, the MCDI-WS has been widely used in studies of early language development in children with autism as well

has been widely used in studies of early language development in children with autism as well as children who are typically developing, late talkers, and those with a variety of neurodeve-lopmental disorders associated with language delay (e.g., Smith et al. 2007). A correlation of .95 (p < .001) was found between the LDS and the MCDI-WS vocabulary scores, although abso-lute vocabulary size was reported to be larger on the MCDI-WS. Mean phrase length as measured by the two instruments showed

reported to be larger on the MCDI-WS. Mean phrase length as measured by the two instruments showed high agreement (r ¼ .90, p < .001). Researchers wanting to make a more accurate estimate of absolute vocabulary size might choose to use the MCDI-WS, espe-cially when assessing vocabulary skills in chil-dren within the 90th percentile. Also, researchers evaluating vocabulary size in children older than 24 months may wish to use the MCDI-WS due to frequently observed ceiling scores in children

than 24 months may wish to use the MCDI-WS due to frequently observed ceiling scores in children 30–32 months of age (e.g., Rescorla and Achenbach 2002). Furthermore, unlike the LDS, the MCDI-WS contains items asking about the child’s vocabulary comprehension and morpho-logical and syntactic development. Despite this, syntax scores from the MCDI-WS were shown to be highly correlated with MLU scores from both the MCDI-WS and the LDS (.81 and .78, respec-tively; Rescorla).

### Clinical Uses  The Language Development Survey can be used as a screening tool in medical, clinical, and educational settings to provide a fast and inex-pensive way to gather information about a young child’s expressive language skills in order to identify children at risk for language delay.

### See Also  *   Language *   Language Disorder *   Screening Measures  ## Language Disorder  *   ▶Childhood Aphasia  ## Language Impairment/ Disorder  *   ▶Speech/Communication Disabilities  ## Language Interventions  ### Definition  Language intervention is broadly defined as “instructional interactions designed to enhance lan-guage” (Weiss 1993, p. 231). Language is described as a complex and dynamic system of conventional symbols that is used in various modes for thought and communication

dynamic system of conventional symbols that is used in various modes for thought and communication (American Speech-Language-Hearing Association [ASHA] 1982). Language develops through a socially and culturally accepted set of rules that govern sounds, words, sentences, meanings, and their use. There must be a common understanding of these rules in order to understand or formulate language. The effective use of language for communication requires a broad understanding of human interac-tion

effective use of language for communication requires a broad understanding of human interac-tion including nonverbal cues (gestures, facial expressions), motivation (a desire to communi-cate), and sociocultural roles (ASHA 1982). If there is a breakdown in any component of language, then effective communication is compromised.

### Historical Background  Early language intervention evolved from psy-cholinguistic and behavioral research in the 1960s. Before that time, it was believed that intellectual ability was stable and therefore sub-ject to little change. However, this belief was challenged by a group of researchers using prin-ciples derived from behavior analysis. These studies demonstrated good response to interven-tion addressing improvements in speech produc-tion in children with significant intellectual

addressing improvements in speech produc-tion in children with significant intellectual disabilities. During this time, information sur-faced describing the development of language as opposed to speech production. It was in the 1970s that the first formal language programs appeared and the first conference on language intervention was held. It was also during this period that parents and caregivers were first included in language intervention programs. It was not until the 1980s that broader

were first included in language intervention programs. It was not until the 1980s that broader concepts of language and language intervention were described. These concepts included interdisci-plinary models, the importance of the social aspects of language, expanding intervention to include infants and small children, the develop-ment of augmentative communication systems, and attention to the environmental context in which language is used (Bricker 1993). During the last two decades, language

context in which language is used (Bricker 1993). During the last two decades, language intervention has continued to evolve, placing increasing impor-tance in the social and functional use of language in context. Additionally, we have observed a greater emphasis on addressing early pre-linguistic stages of language development such as the ability to attend to speech, the ability to understand and use gestures, development of joint attention, and symbolic behaviors such as play.

### Rationale or Underlying Theory  Language skills are the foundation for literacy and learning skills. Communicative competence is related to the development of social behavior, reduced problem behavior, and generally more favorable outcomes. Competence in communica-tion skills has been found to primarily determine the extent to which individuals with ASD can develop relationships and successfully participate in daily activities (Prizant and Wetherby 2005). Research has found that IQ and

participate in daily activities (Prizant and Wetherby 2005). Research has found that IQ and language compe-tence by age of 5 are large predictors of outcomes in children with ASD (National Research Council [NRC] 2001).

### Goals and Objectives  Establishing an effective communication system requires competence in language abilities. Chil-dren with autism spectrum disorders (ASD) pre-sent with deficits in broad range of language domains, including syntax (rules that govern the way words are combined to form phrases and sentences), semantics (meaning), pragmatics (social use of language), and comprehension. Additionally, individuals with ASD have specific impairments in the social aspect of language. Therefore,

individuals with ASD have specific impairments in the social aspect of language. Therefore, language intervention, in individuals with ASD, must include strategies to address the social aspects of language.

### Prelinguistic Stage  Children with ASD have difficulty with the recip-rocal nature of communication. At the early pre-linguistic or preverbal stage of communication, language intervention in children with ASD should focus on establishing reciprocity with others. This may include activities that encourage the back-and-forth flow of interactions (rolling a ball back and forth, peek-a-boo). These activities mirror the to-and-fro interaction of communica-tion. Another core deficit widely

These activities mirror the to-and-fro interaction of communica-tion. Another core deficit widely described in children with ASD is a deficit in joint attention. Joint attention is broadly described as the ability to coordinate visual attention with a social partner (Munday and Burnette 2005). More recently, early language intervention for children with ASD includes addressing deficits in joint attention and recognizes this skill as a foundational skill in language development. Another core deficit

and recognizes this skill as a foundational skill in language development. Another core deficit in children with ASD is in the area of other symbolic behaviors. These other symbolic behaviors include difficulties in imaginative or pretend play (Rogers et al. 2005) and the impaired ability to imitate others. Language intervention programs for children with ASD should aim to improve these areas of symbolic behavior as a prerequisite to language learning.

### Early Language Intervention  Early intervention in ASD focuses on attending to the speech of others and establishing a functional communication system. Individuals with autism often have core deficits in the reciprocal nature of communication. In order to establish communica-tion, a symbolic system must be taught. This may be in the form of words, pictures, signs, as well as nonverbal communication systems such as ges-tures and facial expressions. Within the context of teaching a symbolic

systems such as ges-tures and facial expressions. Within the context of teaching a symbolic system, the reciprocal exchange, the idea that there is a giver and receiver of communication, must be taught. Addi-tionally, children with ASD have reduced initia-tion of communicative acts; therefore, initiation of communication needs to be taught (NRC 2001). In addition to using language, the understanding of language including nonverbal communication should be addressed.

### Expanding Language  The goal of language intervention for children with ASD, with an established verbal communi-cation system, is to expand the means (how the child communicates) and function (why the child communicates). Children with ASD primarily use communication to request or regulate the actions of others. Intervention at this stage focuses on expanding the variety of communicative func-tions while building longer, grammatically correct utterances. At this stage, intervention

func-tions while building longer, grammatically correct utterances. At this stage, intervention addresses the use and comprehension of linguistic concepts such as pronouns, adjectives, prepositions, plu-rals, etc. In addition to that are understanding and responding to questions, expanding vocabu-lary including multiple meaning words, and fol-lowing single and multistep directions. Language intervention should address the use of language in social contexts such as play (Paul and Sutherland

should address the use of language in social contexts such as play (Paul and Sutherland 2005).

### Advanced Language  Language intervention for more advanced lan-guage learners centers on the social use of lan-guage. These skills include initiation and ending of conversations, conversational turn taking, and topic maintenance. Advanced language users with ASD have difficulties in understanding abstract language and idioms, making infer-ences, and recognizing conversational break-downs and making conversational repairs. These difficulties are frequently masked by relatively intact

and making conversational repairs. These difficulties are frequently masked by relatively intact structural language skills and vocabulary (Marans et al. 2005). Language inter-vention at this level frequently includes partici-pation in social skills groups. Social skills groups create an environment that provides a more naturalistic context in which to teach the social aspect of language. These groups also allow for rehearsal of learned skills in a support-ive setting with peers.

### Treatment Participants  Children and adults of all ages may be candidates for language intervention. Language intervention may be initiated (a) to restore lost language abil-ities secondary to a traumatic head injury or stroke, (b) to maximize residual skills secondary to a degenerative disease, or (c) when a language delay or disorder is diagnosed in young children. This diagnosis may be secondary to a develop-mental delay or in isolation as in specific language impairment (SLI).

### Treatment Procedures  There are a wide variety of language intervention approaches. These fall along a continuum in two major approaches, behavioral and developmental-pragmatic approaches.

### Behavioral Approaches  There is a large body of research supporting the use of discrete trial behavioral approaches in ini-tiating speech production and developing atten-tion to and understanding of language. This approach is very structured and relies on adult/ teacher direction. It was one of the earliest empir-ically based interventions for children with ASD. There have been criticisms that discrete trial approaches lead to passive response communica-tion. More recently, behavioral

that discrete trial approaches lead to passive response communica-tion. More recently, behavioral approaches have evolved into what is now commonly referred to as “contemporary applied behavior analysis.” These behavioral approaches apply behavioral methods in a more naturalistic setting and address issues of initiation and generalization. There are studies that show that these more contemporary approaches are effective in improving language outcomes.

### Developmentally Based  This approach assumes that children with ASD develop language in the same way and follow the same sequence as typically developing chil-dren do. In developmentally based approaches, intervention often focuses on the development of strong interpersonal relationships. The sup-porters of developmental approaches hypothe-size that addressing key ASD-specific deficits, such as difficulty in developing interpersonal relationships, may yield broader changes in a range of

as difficulty in developing interpersonal relationships, may yield broader changes in a range of behaviors. This approach often “fol-lows the child’s lead,” allowing the child to choose the activities. The therapist creates the intervention around these naturally motivat-ing activities, scaffolding communication and expectations as the child develops. One of the difficulties of the intervention is that it requires a great deal of creativity and decision making on the part of the interventionist.

that it requires a great deal of creativity and decision making on the part of the interventionist. There is no prescribed protocol of intervention, so caregivers may find the intervention difficult to carry over outside the therapeutic environment. There is some emerging research supporting developmentally based approaches primarily in the area of generalization and social aspects of language.

### Efficacy Information  There is mounting evidence supporting the effec-tiveness of intensive early intervention with a substantial proportion of young children with ASD (NRC 2001). Intervention provided before age of 3 years has an even greater impact than intervention that is initiated after the age of 5. The NRC (2001) indicates that the body of research supports improvements in children with ASD in response to language intervention. However, outcomes in this population are vari-able,

with ASD in response to language intervention. However, outcomes in this population are vari-able, with some children demonstrating sub-stantial gains in a short period of time and others making slow gains over a long period of time. Although there is strong support for lan-guage intervention, there is no sufficient effi-cacy data on specific language approaches over another. Comparative efficacy of communica-tion approaches is often weak due to significant variability within the practice of a

of communica-tion approaches is often weak due to significant variability within the practice of a particular approach, and there is a lack of consideration of the overlap between different approaches, or categories of approaches (Prizant and Wetherby 2005).

### Outcome Measurement  Outside of research, language intervention out-comes are frequently measured by periodic reevaluations, such as standardized tests, lan-guage or play samples, and progress against mea-surable objectives in the treatment plan. Additionally, caregiver and teacher reports of the functional use of language provide important information about the generalization and func-tional use of language across environments.

### Qualifications of Treatment Providers  Speech-language pathologists are specifically trained to assess, develop intervention plans, and treat individuals with language deficits. In order to be licensed, they hold a master’s degree in speech-language pathology and have successfully com-pleted a nine-month clinical fellowship, the year following their graduation. Speech-language pathologists (SLPs) typically take the lead in the assessment, development, and implementation of language

(SLPs) typically take the lead in the assessment, development, and implementation of language intervention programs. However, there are a variety of professionals that additionally address the language needs of children with ASD. Because intervention needs to take place across a variety of environments for learning and generalization of skills, SLPs work closely with caregivers, educators, psychologists, and other related professionals in enhancing language development across environments.

### See Also  *   Behavioral Approaches *   Developmental-Pragmatic Approaches/ Strategies *   Joint Attention *   Language *   Play *   Pragmatic Language *   Social Skill Interventions *   Speech-Language Pathologist (SLP)  ## Language Organ  *   ▶Language Acquisition Device  ## Language Outcome Measures  *   ▶Measuring Language Change Through Natural Language Samples  ## Language Processing  *   ▶Receptive Language  ## Language Style  *   ▶Register Variation  ## Language Tests  ### Synonyms

▶Receptive Language  ## Language Style  *   ▶Register Variation  ## Language Tests  ### Synonyms  Norm-referenced assessment; Norm-referenced testing; Standardized tests  ### Description  Language tests are designed to assess an individ-ual’s receptive and expressive oral and written language skills in one or more of the following language domains: syntax (grammar/word order), morphology (words and word endings that add grammatical information to a sentence such as the past tense “ed”),

and word endings that add grammatical information to a sentence such as the past tense “ed”), semantics (vocabulary including words with multiple meanings as in “I’m feeling blue today”), and pragmatics (i.e., the social use of language). The purposes of lan-guage testing include (1) screening to determine if further and more comprehensive language assess-ment is needed; (2) diagnosis of a language disor-der, impairment, or delay; (3) description of baseline functioning in one or more language

disor-der, impairment, or delay; (3) description of baseline functioning in one or more language domains; (4) development of individualized goals for language intervention; and (5) measure-ment of changes in language functioning in response to a language intervention. “See Also” below for a list of various language tests.

### Psychometric Data  The design, development, and selection of a par-ticular language test should account for the same considerations as other norm-referenced tests. In a norm-referenced language test, an individual’s performance is compared with the performance of a representative group of people, referred to as a norm group or standardization sample. As such, the individual to be tested should be represented within the norm group. Consider-ations for representativeness include similarities

be represented within the norm group. Consider-ations for representativeness include similarities in age, grade level, gender, geographic region, ethnicity, language use (i.e., similar dialect or first language), and social economic status (usually determined by the individual’s or the parent’s educational and occupational levels). The size of the norm group should be large enough to ensure representativeness; most experts recommend that the norm group be comprised of at least 100 individuals in

most experts recommend that the norm group be comprised of at least 100 individuals in each age group (Sattler 2008). Additional considerations for development and selection of a language test include reliabil-ity and validity. Reliability is the repeatability of a measure. Test-retest reliability assesses the repeatability of an individual’s performance; that is, whether the individual performs similarly on the same test readministered within a short interval from the first administration

similarly on the same test readministered within a short interval from the first administration (usually within a 1–2-week period). An equally important consideration is interjudge reliability. This type of reliability assesses whether two examiners would score the performance of the tested indi-vidual similarly so that an equivalent perfor-mance score is obtained.

The validity of a test refers to whether a test measures what it is proposed to measure. Validity must be considered for both test construction and test administration. Content validity refers to whether the items in the test represent the partic-ular language domain being tested. For example, a test of syntactic skills should be comprised of a variety of sentence structure and forms, and the correctness of the response should be based on the use of the correct syntactic form rather than other

of the response should be based on the use of the correct syntactic form rather than other aspects of the response. Face validity, a subjective judgment, refers to whether examiners and indi-viduals receiving the test perceive the test as a reasonable measure. Construct validity is the degree to which a test measures a specific lan-guage construct. For example, higher scores on a language test should reflect a higher degree of skill level; similarly, lower scores should reflect a disorder,

should reflect a higher degree of skill level; similarly, lower scores should reflect a disorder, impairment, or delay in the language domain being tested. Concurrent validity reflects how well the test results agree with other tests that measure the same language domain. In addition to the validity of the test construc-tion, validity of the test administration must be considered by the examiner. An individual’s test performance can be compromised by a variety of factors including fatigue,

An individual’s test performance can be compromised by a variety of factors including fatigue, distractibility, anxiety, physical handicaps, hearing loss, educational opportunities (such that the child/adult has not been exposed to the same language stimulation as those of his/her peers), and familiarity with the test material. One limitation of most language tests published in the United States is that the tests do not include children and adults in the norm group who are learning English as a

that the tests do not include children and adults in the norm group who are learning English as a second language or who are being raised in a culturally different com-munity than the mainstream community. This lim-itation precludes the validity of using language test scores to identify and diagnose language impair-ments in culturally and linguistically diverse chil-dren and adults. In any case, language tests should not be the only tool used to determine an individ-ual’s language performance

language tests should not be the only tool used to determine an individ-ual’s language performance (see next section for further discussion of this topic).

### Clinical Uses  The most common purpose of language testing is to establish a diagnosis; language testing alone is usually not sufficient to identify intervention goals or to document intervention outcomes. Therefore, language testing is only one aspect of a comprehensive language assessment and evalu-ation. Language tests should be supplemented with descriptive developmental assessments, criterion-referenced procedures, language sam-pling, naturalistic observations, and caregiver/ teacher

procedures, language sam-pling, naturalistic observations, and caregiver/ teacher report measures so that a complete profile of an individual’s language performance across settings and communication partners is obtained.

### See Also  *   Children’s Communication Checklist (CCC-2) *   Comprehensive Assessment of Spoken Language *   Norm-Referenced Testing *   Peabody Picture Vocabulary Test *   Pragmatic Communication *   Pragmatic Language Skills Inventory *   Pragmatic Rating Scale *   Pragmatics *   Rossetti Infant-Toddler Language Scale *   Social Language Development Test *   Standardized Tests *   Syntax *   Test of Written Language  ## Language Understanding  *   ▶Receptive Language *   ▶Verbal

Syntax *   Test of Written Language  ## Language Understanding  *   ▶Receptive Language *   ▶Verbal Comprehension  ## Language Use  *   ▶Pragmatics  ## Language Variation  *   ▶Register Variation  ## Language/Autistic Regression  *   ▶Acquired Autism  ## Language-Based Learning Disability  *   ▶Learning Disability  ## Latency  *   ▶Response Latency  ## Latency of Response  *   ▶Response Latency  ## Latency, Second Edition  ### Synonyms  Interval; Latent time; Response time; Time interval  ###

## Latency, Second Edition  ### Synonyms  Interval; Latent time; Response time; Time interval  ### Definition  Latency is a type of continuous measurement used to measure behavior. Latency refers to the time from the onset of a stimulus, to the start of a response (i.e., behavior). Latency can be mea-sured in seconds, minutes, or hours. Most com-monly latency is represented in seconds or minutes. Latency is utilized as a measure for both adaptive and challenging behaviors. Latency measures can

Latency is utilized as a measure for both adaptive and challenging behaviors. Latency measures can provide important infor-mation about the impact an antecedent has on a behavior. Short latencies suggest a strong rela-tionship between an antecedent and the behavior that follows it. Long latencies suggest a weaker relationship. Latency has been utilized in the assessment of behavior for individuals with Autism Spectrum Disorders (see “▶Functional Analysis”) and may provide a more sensitive

with Autism Spectrum Disorders (see “▶Functional Analysis”) and may provide a more sensitive measure than other types of measurement (i.e., frequency or duration).

### See Also  *   Antecedent-Behavior-Consequence (A-B-C) Analysis *   Functional Analysis  ## Latent Class Analysis  *   ▶Latent Variable Modeling  ## Latent Profile Analysis  *   ▶Latent Variable Modeling  ## Latent Time  *   ▶Latency, Second Edition  ## Latent Variable Modeling  ### Synonyms  Confirmatory factor analysis; Exploratory factor analysis; Factor analysis; Factor mixture model-ing; Finite mixture models; Growth mixture modeling; Item response theory; Latent class analysis; Latent

Finite mixture models; Growth mixture modeling; Item response theory; Latent class analysis; Latent profile analysis; Mixture model-ing; Structural equation mixture modeling; Structural equation modeling

### Definition  Latent variable modeling refers to a varied group of statistical procedures that use one or more unobserved (latent) variables to explain and explore relationships between a larger set of observed variables. There are many different types of analyses that fall under this general head-ing, but they can be generally grouped into four categories: models that assume one or more latent dimensions (exploratory and confirmatory factor analysis), one or more latent categories (latent

dimensions (exploratory and confirmatory factor analysis), one or more latent categories (latent class analysis, latent profile analysis), both latent categories and dimensions (factor mixture model-ing), and structural models that enable us to examine relationships between latent variables. Although not strictly latent models, taxometric procedures and cluster analyses also examine the question of whether observed data can be explained by one or more categories. Together these procedures are

of whether observed data can be explained by one or more categories. Together these procedures are useful for under-standing: (1) how autism symptoms and related behaviors aggregate into dimensions; (2) the rela-tionships between dimensions; (3) whether autism is qualitatively distinct from typical social and repetitive behavior; (4) the relative contributions of genetic, shared environment, and unique envi-ronmental factors to autism symptoms in behav-ioral genetics models; and (5) whether

unique envi-ronmental factors to autism symptoms in behav-ioral genetics models; and (5) whether distinct subcategories of autism can be identified. The latter issue may be particularly important for iden-tifying autism subgroups that more closely link to specific biological abnormalities or molecular etiologies.

### See Also  *   Factor Analysis  ## Late-Onset Dyskinesia  *   ▶Tardive Dyskinesia  ## Law  *   ▶Autism in the Courtroom  ## Law Enforcement Agencies and Autism  ### Definition  Law enforcement agencies include local police, state police, federal bureaus of investigation, state and federal courts, and all other law enforcement agencies responsible for the enforcement of laws pertaining to the safety, welfare, and security of a country’s citizens.

### Historical Background  In the United States, autism is on the rise with now approximately 1 in 88 children identified as being on the autism spectrum (Centers for Disease Con-trol and Prevention [CDC] 2012). With this significant increase in the number of individuals being diagnosed with autism, with individuals with autism spectrum engaging in almost all activities of daily life, and with entitle-ments and eligibilities through the Individuals with Disabilities Education Improvement Act

entitle-ments and eligibilities through the Individuals with Disabilities Education Improvement Act (IDEIA) as well as civil rights laws including the Americans with Disabilities Act (ADA) and Section 504 of the Vocational Rehabilitation Act (1975), individuals with Autism, as with other developmentally disabled individuals, have a sev-enfold increased probability of coming in contact with law enforcement agents than age-matched, nondisabled individuals (Curry et al. 1993). Affirming this

law enforcement agents than age-matched, nondisabled individuals (Curry et al. 1993). Affirming this inclusion of people with autism spectrum as being part of the fabric of American society with all of its diversity and ethnicity, cul-ture, gender, religion, sexuality, and disability is their recent inclusion in television, in books, in movies, and in Internet activities. For example, books such as Jody Picoult’s (2010) House Rules focus on a young teenage boy with autism who is obsessed with

as Jody Picoult’s (2010) House Rules focus on a young teenage boy with autism who is obsessed with police activ-ities and crime scene replications. This teenager with autism eventually becomes “a person of inter-est” in a murder in his small town merely because of his obsessive-compulsive interest in the case. Another recent book by Mark Haddon (2003), A Curious Incident of the Dog in the Night-Time, also depicts a boy with autism and his engagement with law enforcement as he tries to unravel

also depicts a boy with autism and his engagement with law enforcement as he tries to unravel the death of his neighbor’s dog; he too is a “person of interest” due to his peculiar behavior. More recently, there are increased depictions of autism on television including “The Big Bang Theory,” “Bones,” and “Parenthood” (Sepinwall 2010). Movies are also depicting autism. The first such movie was the four Oscar Award winning “Rain Man” (1988) and, more recently, the seven Oscar Award winning movie

four Oscar Award winning “Rain Man” (1988) and, more recently, the seven Oscar Award winning movie “Temple Grandin” (2010). The significant increase in the diagnosis of autism in the United States is reflective of increased awareness by the public, expansion of the diagnostic symptomatology, environmental issues, and more sensitive data (Centers for Dis-ease Control and Prevention [CDC] 2011).

With autism being depicted in media, both print and video, as well as the significant increase in numbers of individuals being diagnosed with the syndrome, it would be expected that our fed-eral, state, and local law enforcement agencies would have a better understanding of the disabil-ity and that their reason for existence, i.e., “to protect and serve,” would in turn benefit those with autism spectrum disorder (ASD). Such an expectation is not usually the case. Although law enforcement

spectrum disorder (ASD). Such an expectation is not usually the case. Although law enforcement agencies are becoming more proactive in training their forces to be sensitive to the symptoms and responses by those on the spectrum when confronted by a law enforcement agent, individuals with autism spec-trum are continuing to be misunderstood, both by law enforcement agencies as well as the courts (Debbaudt and Rothman 2001). To this end, indi-viduals with autism are being seriously hurt and

(Debbaudt and Rothman 2001). To this end, indi-viduals with autism are being seriously hurt and sometimes even die while in custody. In Los Angeles, CA, a young man with autism was shot and killed by a police officer merely because he “did not respond to his directives”; he appeared to be “a shadowy figure” as he lay under a balcony behind an apartment building (Watkins 2011). His mother stated, after the shooting, that he was merely “experimenting with living outdoors” as he was “fascinated by

the shooting, that he was merely “experimenting with living outdoors” as he was “fascinated by reading about homelessness.” In 2006, a teenager with autism in Miami is now “brain dead” after officers “hog-tied him following an outburst.” He apparently suffered from a “lack of oxygen to his brain,” anoxia (Local10.com 2006). Situations like this are increasing in frequency across the nation due to poor or no training for law enforcement agents in how to identify individuals on the autism spectrum

or no training for law enforcement agents in how to identify individuals on the autism spectrum and then how to engage them in order to protect not only the person with autism but also the law enforcement officer[s]. One individual who has pioneered the training of law enforcement officers in dealing with indi-viduals on the autism spectrum is Dennis Debbaudt. He published a handout for law enforcement agencies entitled “Avoiding Unfor-tunate Situations” (2002). This handout is used in training

agencies entitled “Avoiding Unfor-tunate Situations” (2002). This handout is used in training law enforcement officers to be able to identify when they are dealing with an individual on the autism spectrum and then how to effec-tively interact with that individual in order to de-escalate the situation and to avoid harm to the individual and/or to the law enforcement agent.

### Current Knowledge  #### Reasons for Law Enforcement Engagement  Before discussing how it is that law enforcement agents should respond to matters involving indi-viduals with autism, it is important to describe what those matters may entail. First, if a child with autism is self-injurious, parents can be accused of child neglect and abuse when neighbors, acquaintances, family members, school personnel, or medical personnel notice that a child has bruises, abrasions, and/or lacerations on

personnel, or medical personnel notice that a child has bruises, abrasions, and/or lacerations on his/her body. In the majority of such cases, law enforcement is contacted by school, medical, and/or social service personnel. Sometimes, under such conditions, the child is taken into protective custody, leaving the parent to defend his/her reputation all the while mourning for the loss of their child to the situation – one which is unfamiliar to the parents and the child, leaving them anxious and

to the situation – one which is unfamiliar to the parents and the child, leaving them anxious and frightened. More often than not such conditions are determined to be self-imposed in nature, and the child returned to his/her family; but the event itself is traumatizing to the parents as well as the child (Rzucidlo 2006). Another reason for involvement of law enforcement agencies can be when a person with autism is creating “a public nuisance.” Such behavior can be as innocent as entering a

person with autism is creating “a public nuisance.” Such behavior can be as innocent as entering a neigh-bor’s home without permission, looking in the windows of a neighbor’s home, or, more seriously, making “terroristic threats,” i.e., yelling epitaphs out of fear or anger, and/or public nudity to name a few. Another reason for involvement might be fail-ing to heed the directions of law enforcement agents when, for example, it comes to motor vehi-cle infractions. Failing to stay within the

agents when, for example, it comes to motor vehi-cle infractions. Failing to stay within the speed limit, come to a full stop at a stoplight, and even driving too slowly can be reasons for law enforce-ment to attempt to issue summonses. Another area can be domestic violence, where an individual with autism may be assaulting his mother or father or siblings while having a behav-ioral meltdown or tantrum. This may include property damage as well.

Currently, an ever-increasing area where law enforcement comes in contact with autism is in illegal Internet activity including hacking into Web sites and databases and, even more devastat-ing, viewing child pornography. And finally, a disturbing trend that is develop-ing across the United States is when personnel in service agencies responsible for individuals with autism call law enforcement agents when an indi-vidual with autism becomes “out of control.” For many such NGOs (nongovernment

agents when an indi-vidual with autism becomes “out of control.” For many such NGOs (nongovernment organiza-tions), this is a policy for “managing” behavior, one which is ill-conceived. Rather than contacting law enforcement to manage such situations, NGOs should have inter-nal policies and training for staff to be able to be the first responders to behavioral outbursts rather than relying on lesser-trained or untrained law enforcement agents to manage these highly vola-tile and potentially

lesser-trained or untrained law enforcement agents to manage these highly vola-tile and potentially dangerous situations. With the aforementioned examples in mind, it is apparent that a person with autism can either be the victim or the perpetrator requiring nuanced responding on the part of the law enforcement agencies responsible for the case. Today, due to heightened potential for civil suits against law enforcement agents, we are find-ing that law enforcement agencies are concerned not only

against law enforcement agents, we are find-ing that law enforcement agencies are concerned not only for the health and safety of all individuals involved in a case but also ensuring that their investigative and retention practices do not expose them to civil or criminal suits. They some-times find themselves defendants for overreacting and causing harm, unlawful seizure/retention, and wrongful death (Johnson 2007). To this end, law enforcement agencies are put-ting forth a greater effort to

death (Johnson 2007). To this end, law enforcement agencies are put-ting forth a greater effort to properly train law enforcement agents in “tactical communication.” George Thompson, founder and president of the Verbal Judo Institute, Auburn, New York, meta-phorically states it quite succinctly: The American Eagle as shown on the dollar bill holds a spear in one talon and an olive branch in the other. This is the image of the peace warrior – what every police officer should also reflect, how-ever

This is the image of the peace warrior – what every police officer should also reflect, how-ever most police training focuses only on the spear. Tactical communication training focuses on the olive branch. (Thompson and Jenkins 2004) From what is known about individuals with autism, being able to “tactically communicate” with them always results in the best possible out-come not only for the individual with autism but also for the law enforcement agent.

#### Responses of Individuals with Autism  Research has demonstrated that the majority of individuals with autism have overly active amyg-dala, the centers of the brain that trigger a fight-or-flight condition (Baron-Cohen et al. 2000). The prefrontal cortex is the area of the brain for exec-utive functioning; it helps to determine whether a condition/situation requires “fight or flight” or should be directed to the hippocampus, the area for calming and happy thoughts (Umeda et al. 2010). For

be directed to the hippocampus, the area for calming and happy thoughts (Umeda et al. 2010). For individuals with autism, the prefrontal cor-tex and hippocampus are often not as robust as in typical individuals, and so, the amygdala then is the ultimate arbiter of environmental engage-ments. As such, most individuals with autism are in a state of alertness/vigilance, and any stimulus that has a history of an attribution of trauma or fear on the part of the individual can trigger a signifi-cant

history of an attribution of trauma or fear on the part of the individual can trigger a signifi-cant behavioral response, one that appears to be “overreacting.” Novel experiences also have a tendency to trigger the amygdala and result in fear, anxiety, and panic on the part of the individ-ual with autism (Holmes 2009). With this in mind, when law enforcement agents engage an individual with autism, more often than not, if improperly handled, such engagement can trigger a fight-or-flight response

more often than not, if improperly handled, such engagement can trigger a fight-or-flight response on the part of the individual usually resulting in someone getting hurt or worse, mortally wounded.

### Future Directions  #### Information that Law Enforcement Agents Should Have  Individuals in law enforcement should understand that autism is a developmental disorder that severely impacts the capacity of an individual to understand social values and mores and also to comprehend language, especially language that is replete with sarcasm, idioms, and/or suggestion (The Autism Society of America 2011). To these ends, training for law enforcement agents must focus on tactical communication,

2011). To these ends, training for law enforcement agents must focus on tactical communication, i.e., approaches that utilize proper language, e.g., language that is concrete and to the point, and directives that tell an individual what to do as opposed to merely what not to do. Individuals with autism become anxious when they are told to stop doing something without explaining the profound impact on children and the severe legal consequences for the behavior must be replaced with something

on children and the severe legal consequences for the behavior must be replaced with something more prosocial. He must be told the consequences of such behav-ior and given one or two clear choices to replace that immoral/illegal behavior (Moran et al. 2011). It is important to note that more alternative choices rather than fewer is not necessarily indi-cated as it may create anxiety on the part of people with autism as choice making is a conflicting, difficult exercise for them. Being aware of

of people with autism as choice making is a conflicting, difficult exercise for them. Being aware of “body language” is also impor-tant as individuals with autism have difficulty reading nonverbal social cues such as facial emo-tions and body posturing. In an article “Contact with Individuals with Autism” by Dennis Debbaudt and Darla Rothman published in the FBI Law Enforcement Bulletin (April, 2001), these authors review the many nuances of autistic individuals’ responses in gen-eral and

2001), these authors review the many nuances of autistic individuals’ responses in gen-eral and specifically when law enforcement agen-cies are involved with them in order that agents would not feel that the person is dismissing them, mocking them, or resisting their directives. Additionally, they address how an agent should interact with a person with autism in order to defuse and/or not incite an individual when responding to a crisis or investigating a potential criminal activity.

incite an individual when responding to a crisis or investigating a potential criminal activity. Specifically, they dis-cuss behavior that will help agents recognize per-sons with autism and then they offer suggested responses on the part of law enforcement agents in order to secure the safety of the person with autism as well as the safety of the law enforcement agent and others.

#### Recognizing a Person with Autism  A person with autism:  *   Has difficulties with communication, maybe nonverbal, maybe echolalic, i.e., repeating exactly what is said to them (may appear as mocking), may utilize a communication sys-tem such as the Picture Exchange Communi-cation System (Bondy and Frost 2001), may use a computer-generated augmentative com-munication system, and/or may use sign language.

*   Has significant social challenges and may appear to ignore/dismiss the law enforcement agent.
*   May not heed a request to “stop” by running away in a fight-or-flight response.
*   Oftentimes has heightened levels of anxiety and may rock back and forth covering ears and moaning or screaming.
*   May not recognize the law enforcement agent’s badge or uniform or even understand the authority associated with such information.

*   Usually only understands concrete information and will respond in a concrete manner. For example, (agent) “What are you doing?”; (person with autism) “Standing here.”
*   Does not understand sarcasm, jokes, or teasing. *   Generally presents poor eye contact or mal-adaptive eye movements appearing to be indif-ferent or lying to the person making requests.

*   Often has difficulties in determining personal space, more often than not by moving away, i.e., standing at a great distance from the law enforcement agent or, in some cases, rapidly approaching the agent in an effort to hug or make personal contact with the agent.
*   May appear argumentative or belligerent by not responding to demands of the law enforce-ment agent or constantly inquiring as to why demands are being made.

*   May be extremely fearful of dogs (K-9 responders) and sights (flashing lights) and sounds (sirens) associated with law enforcement.
*   May be on medication that makes the individ-ual appear to be drunk or on drugs.
*   May try to get the law enforcement agent to leave by screaming incessantly or attempting to bite or spit at the law enforcement agent.
*   May bang his head against hard surfaces or generally engage in self-injurious or non-directed assaultiveness.

*   May try and calm himself/herself by engaging in significant self-stimulatory behavior includ-ing hand flapping, head weaving, body rocking, and clapping hands.

*   May have epileptic seizure activity including petit and grand mal seizures. *   May incessantly inquire of the law enforce-ment agent personal information in a persever-ative fashion including “What is your name?” “How old are you?” “When were you born?,” all of which may appear to be distracting the agent from his line of duty when in actuality he is merely collecting information to better know the agent.

*   Will be correct/exact in responding, often agreeing to culpability at a crime scene or during interrogation in an effort to try and get back to some order in their life, as change and disruption in routine is very distressing.

*   During interrogation, due to central auditory processing dysfunctions, may affirm portions of what they hear, as they are not able to process all the questioning and information presented to them. This frequently leaves the interrogating agents with testimony that holds individuals with autism accountable for behav-ior that they did not engage in.

#### How to Respond to an Individual with Autism  *   Speak slowly and concretely; do not use slang or metaphors. *   Allow extra time for the individual to process information, sometimes a 3–5 s delay.
*   Position oneself so as not to give the impres-sion of blocking the individual, which may only trigger a fight-or-flight condition.

*   Be a calming influence under volatile condi-tions as individuals with autism can sense fear, anger, and other emotions in others more read-ily than being able to see/read such emotions on others’ faces and body language.
*   Do not engage in interrogation activities until the situation is calm and the individual with autism appears safe and more relaxed.

*   Ask caregiver/parents about a situation rather than expecting the person with autism to be able to answer questions with a high degree of fidelity.
*   Assess the situation for any personal injury to the individual with autism frequently as they may be unaware of personal safety and danger as well as, due to lower sensory feedback mechanisms, lack awareness of physical injury to themselves.

*   Due to sensory dysfunction, be aware of exces-sive lights and noises as this can result in a fight-or-flight response on the part of a person with autism.
*   Move slowly with confidence as this will calm the individual with autism and reduce the potential for viewing the agent as a threat.
*   Avoid touching the individual as this may be alerting and evoke a fight-or-flight response.

*   Avoid touching the individual as this may be alerting and evoke a fight-or-flight response.
*   Be prepared to use restraint procedures only as a last resort and always be aware of the poten-tial for asphyxiation or bodily harm as a person with autism, under such conditions, frequently is in a heightened state of arousal and will be fighting the controlling measures. This can escalate to the point of agents compressing a person’s chest and resulting in unintentional death.

*   Finally, if a person with autism is required to be brought into custody, be certain to assess the capacities of the individual through consulta-tion with a mental health/human services professional who understands autism. Be pre-pared to segregate individuals with autism from the general population of those incarcer-ated as those with autism will be vulnerable to abuse and assault and do not have the capacity to defend themselves.

In conclusion, law enforcement, when autism is a consideration, requires ongoing in-service training of agents. Such training will help agents to better understand the motives behind the per-son with autism’s behavior and, in turn, defuse what might otherwise be a situation that could result in someone getting hurt or even fatally harmed.

### See Also  *   Dispute Resolution Procedures *   Federal Rules of Evidence *   Formal Complaint  ## Law Enforcement Knowledge of Autism  ### Definition  This entry is focused on providing information regarding law enforcement officers’ (LEO) knowledge of autism spectrum disorder (ASD). Little research exists on the number of interactions LEOs have with individuals with ASD; however it is likely, given the current prevalence rates, that such interactions take place regularly. There are a

given the current prevalence rates, that such interactions take place regularly. There are a growing number of training programs aimed at providing LEOs with the ability to recognize the presence of behaviors commonly associated with ASD. Through trainings that increase awareness and knowledge of ASD, it is hoped that LEOs are better prepared to respond in professional situa-tions involving individuals on the spectrum.

### Historical Background  Exposure of problematic interactions between law enforcement officers (LEOs) and individuals with ASD supports the need for ASD-specific training for LEOs. There have been a number of highly publicized encounters between individuals with ASD and LEOs that have resulted in injury to caregivers or the death of an individual with ASD. Copenhaver and Tewksbury (2019) com-pleted an analysis of media reports involving LEOs and ASD to determine the types of interac-tions LEOs

an analysis of media reports involving LEOs and ASD to determine the types of interac-tions LEOs most commonly have with individuals with autism. Analyses yielded several themes including incidents involving autistic persons being questioned or treated as suspects, incidents where individuals with ASD were the victim of crime, wandering/missing persons with ASD, and positive stories of interactions between LEOs and individuals with ASD. As a result of previous incidents where LEOs were

between LEOs and individuals with ASD. As a result of previous incidents where LEOs were ill-prepared to respond to calls involving individuals with ASD, several US states including Florida, New Jersey, and Pennsylvania now require LEOs to receive training in ASD. Given ASD affects an estimated 1 in 59 individuals 8 years and older in the USA (CDC), it is likely that LEOs interact with indi-viduals with ASD on a fairly regular basis. Lack of knowledge of ASD may result in LEOs mis-interpreting

with ASD on a fairly regular basis. Lack of knowledge of ASD may result in LEOs mis-interpreting ASD-specific behavior as non-compliant, threatening, disorderly, or suspicious.

Interactions among LEOs and individuals with ASD may result from a variety of circumstances. Encounters may include individuals with ASD presenting as a victim or witness to crime; the individual may be suspected of committing a crime or may have wandered away/gone missing. Previous research documents that persons with developmental delays, including those with ASD, are at increased risk for abuse and victimi-zation (Petersilia 2001). In other instances, inter-actions between LEOs and

for abuse and victimi-zation (Petersilia 2001). In other instances, inter-actions between LEOs and individuals with ASD may be as a result of co-occurring psychiatric or medical concerns (Tint et al. 2017). LEOs may also be called upon in cases involving elopement, sensory overstimulation, and behavioral difficul-ties such as aggression, yelling, and self-injury. Using a nationally representative sample of ado-lescents and young adults with ASD, Rava et al. (2017) found that by age 21

sample of ado-lescents and young adults with ASD, Rava et al. (2017) found that by age 21 approximately 20% had been stopped by the police for questioning, and almost 5% had been arrested. Rava et al. (2017) also found that individuals with ASD who display externalizing behaviors are more likely to be involved in the criminal justice sys-tem. Previous research offers conflicting findings as to whether children and young adults with ASD are at higher risk for involvement with the crimi-nal justice

children and young adults with ASD are at higher risk for involvement with the crimi-nal justice system than the general population; however, it appears likely based on existing research that people with ASD are somewhat over-represented in the criminal justice system (King and Murphy 2014). As LEOs are the first contact between individuals and the penal system, instruction for LEOs specific to ASD is warranted. Such training provides LEOs with awareness of the behavioral symptoms and social

ASD is warranted. Such training provides LEOs with awareness of the behavioral symptoms and social impairments that may make an individual with ASD more vulnerable to be considered a suspect. For exam-ple, if an individual with ASD does not respond to police when spoken to, avoids eye contact upon questioning, does not remain still or tries to flee the scene, these behaviors may be misinterpreted as a sign of guilt as opposed to behavioral charac-teristics of ASD. Although in the UK it has been

as a sign of guilt as opposed to behavioral charac-teristics of ASD. Although in the UK it has been suggested that officers ask the question “Do you have any difficulties that I may not be aware of?” during initial contact with a person they suspect may have autism, individuals with ASD may not self-disclose their diagnosis to LEOs due to fear of discrimination (Crane et al. 2016) or due to com-munication/language delays and deficits associ-ated with their ASD diagnosis. Murrie et al. (2002) noted

delays and deficits associ-ated with their ASD diagnosis. Murrie et al. (2002) noted that failure to correctly identify individuals who are on the autism spectrum, or overlooking the behavioral features characteristic of an ASD diagnosis, may lead to inappropriate forensic assessment of criminal responsibility, legal decisions, or clinical interventions.

### Current Knowledge  Research regarding LEO knowledge of ASD and disability awareness is sparse. A study by Modell and Mak (2008) found that 80% of officers were unable to accurately identify characteristics of ASD, had difficulty distinguishing between dis-abilities, and perceived themselves as competent in ASD when they may not have been. In a study of UK officers’ awareness and understanding of autism, Chown (2009) found that 62% of officers had received no formal training in ASD, and

of autism, Chown (2009) found that 62% of officers had received no formal training in ASD, and approximately half were able to recognize key features of autism. Although officers in the chown study rated their competency in ASD lower than officers in the Modell and Mak study, findings suggest officers’ self-assessments may exaggerate competence. Research findings sup-port that the majority of LEOs receive very little or no training in disabilities and ASD (Chown 2009; Eadens et al. 2016). As such, it

very little or no training in disabilities and ASD (Chown 2009; Eadens et al. 2016). As such, it is not surprising that they demonstrate limited knowl-edge of the characteristics of ASD and how to appropriately respond to incidents involving indi-viduals with ASD. Several studies have been conducted examin-ing LEO training requirements and inclusion of training specific to ASD. Laan et al. (2013) conducted interviews with LEO training coordi-nators in seven states and compared LEO training

conducted interviews with LEO training coordi-nators in seven states and compared LEO training materials related to recommendations for training on ASD and guidelines for training on other men-tal health disorders. Results indicated that most officers received between 400 and 770 hours of total training at the basic recruit level, of which only 3 to 12 hours were focused on mental health disorders. Training provided on mental health dis-orders that includes ASD is problematic as autism is not a

Training provided on mental health dis-orders that includes ASD is problematic as autism is not a mental health disorder. Although individ-uals with autism may present with co-occurring mental health diagnoses, providing training that presents ASD as a mental health disorder to officers may result in confusion and impair LEOs’ ability to accurately distinguish autism from other mental health disorders (Hepworth 2017). Gard-ner et al. (2019) found that although over half of LEOs reported having

(Hepworth 2017). Gard-ner et al. (2019) found that although over half of LEOs reported having responded to a call involv-ing an individual with ASD within the last year, over 70% of officers reported they had received no formal training in ASD. A quarter of these calls resulted in involuntary psychiatric hospitalization of the person with ASD.

Although some states, such as Florida, New Jersey, and Pennsylvania have now mandated ASD training for LEOs, little is known regarding training content, format, or the impact of these trainings on practice. In addition, extension of this training requirement to other states and inclusion of other first responder departments (e.g., firefighters, EMS, etc.) remains unknown. Research findings indicate that LEOs who have completed ASD-specific training report they feel better prepared to respond to

that LEOs who have completed ASD-specific training report they feel better prepared to respond to incidents involving individuals with ASD (Gardner et al. 2019). A study of LEOs’ perception of the most positive aspects of ASD-specific training included increased general knowledge of ASD, minimizing distress of individuals with ASD when responding to a call, practical application and usefulness for their LEO role, and modifying interview tech-niques. The top three aspects of training that LEOs

their LEO role, and modifying interview tech-niques. The top three aspects of training that LEOs deemed not satisfactory included training that lacked focus on ASD in the criminal justice context, overly simplistic content, and lack of practical application and relevance for LEOs (Crane et al. 2016). Chown (2009) police survey respondents suggested training should be stream-lined into existing training programs, utilize a variety of delivery mechanisms as people learn best in different ways,

training programs, utilize a variety of delivery mechanisms as people learn best in different ways, include a variety of disabil-ities, incorporate advice on tactics to use, provide opportunities to interact with persons with ASD, and provide specific questions officers can ask to someone to determine if they have a hidden disability. In considering the ideal format for increasing LEO awareness of ASD, in-person training is considered superior to online training modules. Teagardin et al. (2012)

ASD, in-person training is considered superior to online training modules. Teagardin et al. (2012) provided ASD-related training to police officers via video. Officers who participated in the training outperformed offi-cers who did not receive training on a measure of ASD-related knowledge; however, neither group demonstrated mastery of training material. The authors concluded that video training is likely insufficient to train officers on how to assess and respond to individuals with ASD. Instead

likely insufficient to train officers on how to assess and respond to individuals with ASD. Instead of video or online training, in vivo training provided by individuals who have expertise in ASD and law enforcement is ideal as it increases the validity of the ASD training. It is recommended that in vivo training includes opportunities for role-playing and hands-on activities to supplement training. As a vulnerable population within our society, a growing awareness of ASD by LEOs is warranted;

As a vulnerable population within our society, a growing awareness of ASD by LEOs is warranted; however, LEOs’ experiences and knowledge specific to ASD remains an under-researched area.

### Future Directions  Additional research is needed to determine the ideal format for training to increase LEOs’ knowl-edge of ASD and prepare them for contact they may have with individuals with ASD in the course of their duties as an officer. In addition, further research is needed to determine the most pertinent and appropriate content to provide LEOs about ASD. Previous research suggests trainings should include information regarding the core features of autism, as well as practical

trainings should include information regarding the core features of autism, as well as practical knowledge and spe-cific tactics for interacting with autistic persons. More information is needed regarding the types of calls LEOs receive in the line of duty that include individuals with ASD (e.g., missing person, vic-tims of abuse, domestic assault, etc.) to assure that training programs provide information that is most applicable for LEOs. As the reported prevalence rate of ASD increases, LEOs

that is most applicable for LEOs. As the reported prevalence rate of ASD increases, LEOs are increasingly more likely to interact with individuals with ASD within their professional role on a regular basis. Results of previous research supports there is a need for LEOs to receive formalized training in ASD (Chown 2009; Eadens et al. 2016, Gardner et al. 2019; Modell and Mak 2008; Teagardin et al. 2012). Outcomes of such trainings result in LEOs reporting they feel better equipped to respond to

2012). Outcomes of such trainings result in LEOs reporting they feel better equipped to respond to calls involving individuals with ASD (Gardner et al. 2019). However, research is needed to determine the real-world impact of ASD-specific training on outcomes of calls (e.g., use of force, arrest, involuntary psychiatric hospi-talization), especially given previous findings that LEOs tend to perceive themselves as competent in ASD when they may not be (Modell and Mak 2008; Chown 2009).

### See Also  *   First Responders and Autism *   Violence and ASD  ## Lawson, Wendy  ### Name and Degrees  Dr. Wendy Lawson (Bss, Bsw [Hons], GDip [PsychStud], GDip [Psych]) is an Australian writer, poet, adult educator, and immensely pop-ular public speaker with Asperger’s syndrome. In 2009, she was awarded her Ph.D. in Psychology at Deakin University in Victoria, Australia. Her work explores the influence of neurologically typical development on that of development in individuals with autism

influence of neurologically typical development on that of development in individuals with autism and its impact upon learn-ing styles and related parental distress. Dr. Lawson has been married, separated, and divorced. She brought up four children and has experienced the death of one of her teenage sons. Wendy’s younger son, Tim, also has Asperger’s syndrome. She has said: “I knew Tim was like me in so many ways. He has a big heart and a wide appealing grin. Seeing him experiencing similar

me in so many ways. He has a big heart and a wide appealing grin. Seeing him experiencing similar difficulties to my own, though, is painful and I so wish I could make life easier for him.” At school, Wendy was considered to be intel-lectually disabled and “almost incapable of doing as she is told.” In her teens, she was misdiagnosed as “schizophrenic.” This label stuck for more than 25 years, until she was diagnosed in 1994 as being on the autism spectrum. She coined the term “diffability” to

she was diagnosed in 1994 as being on the autism spectrum. She coined the term “diffability” to refer to her view that high-functioning autism is as akin to a difference as to a disability. In 2008, Dr. Lawson was awarded fourth place as “Victorian Australian of the Year.”

## LDS  *   ▶Language Development Survey  ## Lead Exposure and Autism  ### Synonyms  Lead poisoning; Plumbism  ### Definition  Lead exposure results when an individual is exposed to this heavy metal. Lead is toxic to a range of organ systems and is particularly prob-lematic in children where it can interfere with development and lead to a range of problems in behavior and in learning. Physical symptoms such as abdominal pain, irritability and confusion, and anemia can be noted, and with high

symptoms such as abdominal pain, irritability and confusion, and anemia can be noted, and with high levels of lead, seizures and even death can result. Lead can be taken into the body through contaminated food, water, and the air. Lead paint has been the most frequent source of exposure in the past (fortunately this is now decreasing because of public health awareness and new standards for paint and other materials) but can still arise in older homes. Prevention is important. Children, e.g.,

and other materials) but can still arise in older homes. Prevention is important. Children, e.g., those with autism, who frequently mouthed objects can be at higher risk. At lower levels of lead exposure, children have few problems although even then subtle problems may exist. The Center for Disease Control and Prevention considers any lead level of 10 mg/dl or above to be abnormal. A level of lead above this level should lead parents/caretakers to search for sources of exposure. At levels of

above this level should lead parents/caretakers to search for sources of exposure. At levels of 40 mg/dl or above, anemia may be noted, with high level (60 mg/dl) resulting in developmental and behav-ioral change and even brain symptoms (coma or seizure). Primary care providers should routinely screen for lead exposure in younger children and even in older children who may be at risk because of possible exposure, e.g., through repeated mouthing of objects. Clearly removal of sources of exposure

exposure, e.g., through repeated mouthing of objects. Clearly removal of sources of exposure is important. A range of medications are available to lower levels of lead through che-lation (chemicals that bind with lead so that it is excreted from the body). These agents do have some risks and side effects, and treatment should be carefully managed by a physician.

### See Also  *   Chelation *   Pica  ## Lead Poisoning  *   ▶Lead Exposure and Autism  ## Leaky Gut Syndrome  ### Definition  Autism spectrum disorders (ASD) comprise a group of diagnoses that are collectively character-ized by qualitative impairments in social interac-tion and communication along with stereotyped and repetitive behaviors and interests. The under-lying cause, or etiology, of ASD is poorly understood but may be multifactorial with both genetic and environmental factors playing

is poorly understood but may be multifactorial with both genetic and environmental factors playing a role. The “leaky gut syndrome,” as it applies to ASD, is based on the theory that the lining, or mucosa, of the intestinal wall is damaged, allowing the con-tents of the intestine, such as undigested food, toxins, bacteria, and waste, to “leak through” an abnormally permeable bowel wall. There are many theories involving the leaky gut, or increased intestinal permeability specific to ASD. One of

many theories involving the leaky gut, or increased intestinal permeability specific to ASD. One of these is the leaky gut-opioid excess theory, which posits that incompletely digested proteins derived from the diet are absorbed through a leaky gut, thereby entering the central nervous system and interfering with normal brain function which may cause or exacerbate the behavioral symptomatology of ASD (White 2003).

### Historical Background  Many parents of children with ASD report con-cerns with gastrointestinal symptoms. Associated behavioral symptoms, including behavioral dis-ruption at mealtimes, unusual vocalizations, sleep disruption, and irritability, could be second-ary to gastrointestinal distress (Buie et al. 2010). There have also been observations of gastrointes-tinal symptoms coinciding with the onset of parental concerns regarding development. The hypothesis of a “gut-brain linkage” in ASD

onset of parental concerns regarding development. The hypothesis of a “gut-brain linkage” in ASD is based in part on these reports (White 2003). The suggestion of potential links between celiac dis-ease (a digestive condition triggered by consump-tion of the protein gluten found in wheat, barley, and rye) and malabsorption in ASD arose in early research conducted in the 1960s and 1970s (Horvath and Perman 2002). This was followed by relatively little investigation into the possibility of

and Perman 2002). This was followed by relatively little investigation into the possibility of gastrointestinal abnormalities in autism until the 1990s when research positing a difference in the immune function and permeability of the gut was published (Erickson et al. 2005). Since that time, exploration of gastrointestinal differences and their association with ASDs has continued, along with debate regarding whether gastrointes-tinal symptoms are truly more prevalent than in the general

debate regarding whether gastrointes-tinal symptoms are truly more prevalent than in the general population and whether there is an autism-specific gastrointestinal abnormality (Buie et al. 2010).

The leaky gut-opioid excess theory involves peptides derived from the partial digestion of glu-ten (a protein found in wheat, barley, and rye) and casein (a protein found in milk), specifically gliadomorphins and casomorphins respectively, being absorbed through a leaky gut and entering the central nervous system (de Magistris et al. 2010; Millward et al. 2009). The theory hypothe-sizes that these peptides, referred to as exorphins due to their dietary origin, mimic the opioid hor-mone

these peptides, referred to as exorphins due to their dietary origin, mimic the opioid hor-mone β-endorphin and interfere with normal brain function. This theory was based in part on a con-cept posited by Panksepp in 1979 that the behav-ioral symptomatology of autism may be secondary to increased activity of the opiate sys-tem. The concept was based on work performed in young animals. These animals showed symptoms similar to those seen in children with ASD when they were given low doses of

showed symptoms similar to those seen in children with ASD when they were given low doses of opiate drugs (Christison and Ivany 2006; Panksepp 1979). Subsequently, Dohan developed a hypothesis regarding an excess of dietary peptides from glu-ten and casein interacting with a genetic disposi-tion in the etiology of schizophrenia. This hypothesis was based in part on anecdotal reports of increased incidence of celiac disease in schizo-phrenia and the decreased prevalence of schizo-phrenia in

incidence of celiac disease in schizo-phrenia and the decreased prevalence of schizo-phrenia in populations that consumed little to no grain products (Dohan 1988). Meanwhile, people with ASD were reported to show an increase in 24-h low molecular weight peptide excretion in their urine (Cass et al. 2008). Increased opioid levels were also reported in the cerebrospinal fluid of individuals with ASD (Millward et al. 2009; White 2003). Clinical trials of opiate antag-onists in the treatment of ASD

(Millward et al. 2009; White 2003). Clinical trials of opiate antag-onists in the treatment of ASD followed. Researchers proposed dietary elimination of these proteins as a potential treatment for ASD. Anecdotal reports of this dietary intervention noted improvements in symptoms of ASD (Christison and Ivany 2006). To date, the gluten-free, casein-free diet is a popular but yet unproven intervention in ASD (Buie et al. 2010).

In order for these peptides to be abnormally absorbed, there would have to be evidence of increased intestinal permeability or a “leaky gut.” In the healthy gut, the intestinal mucosa serves as a barrier against the largest site of expo-sure to the external environment in the human body. The integrity of this barrier is important to protect the body against bacteria, toxins, or anti-genic molecules (a substance that can trigger the production of antibodies by the immune system). A layer of

(a substance that can trigger the production of antibodies by the immune system). A layer of epithelial cells serve as this physical barrier. Underlying this barrier is the highly immunoreactive subepithelium, which serves as a line of defense to invading organisms that breach the epithelium. Breaching the epithelial barrier can lead to pathologic stimulation of the subepithelium by exposing it to the numerous antigenic molecules, including food antigens, located in the lumen of the intestine.

the numerous antigenic molecules, including food antigens, located in the lumen of the intestine. Intestinal permeability has been associated with several medical conditions, including celiac disease, inflammatory bowel disease, diabetes mellitus type 1, and atopic disorders such as allergies, eczema, and asthma (Liu et al. 2005). Intestinal permeability is often tested through the differen-tial sugar absorption test. This test involves the ingestion of two indigestible sugars of different

sugar absorption test. This test involves the ingestion of two indigestible sugars of different molecular sizes and absorption routes, which are secreted in the urine after uptake from the gastro-intestinal tract, typically lactulose and mannitol. In the healthy gut, absorption of the larger sugar lactulose is much less than for the smaller sugar mannitol. In pathologic conditions, the permeabil-ity for the larger sugars is increased while that for the smaller sugars remains the same or

for the larger sugars is increased while that for the smaller sugars remains the same or decreases (D’Eufemia et al. 1996; de Magistris et al. 2010; Liu et al. 2005). Therefore, the ratio of the large (lactulose) to small (mannitol) sugar is increased. This has been the method for assessing intestinal permeability in children with autism spectrum disorders. D’Eufemia et al. (1996) performed early work on this topic. They evaluated 21 chil-dren with autism who were without gastrointesti-nal

work on this topic. They evaluated 21 chil-dren with autism who were without gastrointesti-nal symptoms and 40 healthy, age-matched controls. Nine of the 21 children with autism had an altered lactulose to mannitol ratio compared to none of the controls. The researchers noted that mannitol passes through the gut wall via a trans-cellular pathway. Lactulose, however, passes through the gut wall via intercellular routes as do other heavier compounds, including peptides. They hypothesized that the

intercellular routes as do other heavier compounds, including peptides. They hypothesized that the increased permeability may be secondary to damage to the tight intercellular junctions of the gut mucosa. These tight intercellular junctions connect the epithelial cells to their neighbors and limit movement of molecules between the cells (Liu et al. 2005).

Although the possible mechanisms are unknown, multiple hypotheses have been suggested regarding the potential cause of increased intestinal permeability in individuals with ASD (White 2003). Gut inflammation may lead to increased permeability as well as dimin-ished digestive enzyme activity including that of peptidases (enzymes that break down proteins), which may account for the incompletely digested peptides. Conversely, the loss of integrity of the gut mucosa could lead to pathologic

digested peptides. Conversely, the loss of integrity of the gut mucosa could lead to pathologic stimulation of the immune system given the increased expo-sure of immunogenic compounds (Liu et al. 2005; White 2003). Inflammatory responses in the gut of children with ASD have been reported (Erickson et al. 2005; Horvath and Perman 2002). Intestinal pathology described by Wakefield et al. (2005) included ileal lymphoid nodular hyperplasia and nonspecific colitis in children with autism spec-trum

ileal lymphoid nodular hyperplasia and nonspecific colitis in children with autism spec-trum disorders. The possibility of an autism-specific gastrointestinal abnormality, referred to as “autistic enterocolitis,” has often been cited as a potential link in the chain of the “leaky gut” hypothesis (Buie et al. 2010; Erickson et al. 2005; Wakefield et al. 2005; White 2003). An environmental trigger, namely, the MMR (measles, mumps, rubella) vaccine, was suggested but never proven as a potential cause

the MMR (measles, mumps, rubella) vaccine, was suggested but never proven as a potential cause of the pathology in this hypothesis (Christison and Ivany 2006; Erickson et al. 2005; White 2003). Inflammatory responses are further thought to regulate the sulfated glycosaminoglycans (GAGs), which are widely distributed in the vas-cular and connective tissues of the healthy intes-tine. Decreased sulfated GAGs have been found in patients with inflammatory bowel disease, a finding which has been

sulfated GAGs have been found in patients with inflammatory bowel disease, a finding which has been hypothesized to allow protein and fluid leakage across the wall of the intestine. Sulfation defects have been noted in children with ASD and could be one potential cause of increased intestinal permeability (Erickson et al. 2005; White 2003). Further, inges-tion of gluten itself has been linked with intestinal permeability as the protein component gliadin has been demonstrated to disrupt

with intestinal permeability as the protein component gliadin has been demonstrated to disrupt intercellular junc-tions (Liu et al. 2005). A genetic factor has also been implicated in impaired gut integrity in individuals by the finding of increased intestinal permeability in first-degree relatives of patients with inflammatory bowel disease (de Magistris et al. 2010; Liu et al. 2005). Further, a mutation affecting the expression of the gene encoding the MET receptor tyrosine kinase has been

a mutation affecting the expression of the gene encoding the MET receptor tyrosine kinase has been associated with both ASD and gastrointestinal conditions and functions in both brain development and gas-trointestinal repair by modulating intestinal epi-thelial cell proliferation (Campbell et al. 2009).

### Current Knowledge  Increased intestinal permeability has been linked to several hypotheses regarding the etiology or symptomatology of ASD, including immune dys-function and increased opiate activity (White 2003). Intestinal permeability was initially reported by D’Eufemia et al. in 1996 on a small sample of children with autism spectrum disorders without gastrointestinal symptoms. This finding was not observed in healthy, typically developing controls. Overall, the literature is mixed in

was not observed in healthy, typically developing controls. Overall, the literature is mixed in regard to the presence of a “leaky gut.” Two additional studies utilizing neurotypical controls were performed. The first study enrolled 14 children with ASD who had current or previous gastroin-testinal symptoms by parental report, 7 unaffected siblings of these children, and 8 unrelated children with typical development. There were no differ-ences detected on the differential sugar absorption test

typical development. There were no differ-ences detected on the differential sugar absorption test using lactulose and mannitol, as described above (Robertson et al. 2008). However, a recent study of 90 children with ASD and 146 of their first-degree relatives found that 37% and 21%, respectively, had increased intestinal permeability based on the differential sugar absorption test using lactulose and mannitol, compared to 5% of 146 healthy adults and none of the 64 healthy child controls.

and mannitol, compared to 5% of 146 healthy adults and none of the 64 healthy child controls. Remarkably, increased intestinal permeability was not associated with intestinal inflammation when measured by fecal calprotectin in this study. Calprotectin is a protein in the intracellular fluid of neutrophils, which has been used as a noninvasive marker of inflamma-tion in inflammatory bowel disease (de Magistris et al. 2010). These findings suggest that altered intestinal permeability may be a real

Magistris et al. 2010). These findings suggest that altered intestinal permeability may be a real finding in autism but may not be linked to intestinal inflammation. Concern regarding an interactional relation-ship between factors affecting the functioning of the gastrointestinal system and that of the central nervous system underlying the etiology of ASD is based in part on reports of increased gastrointes-tinal dysfunction in children with autism spectrum disorders. To date, there is no

gastrointes-tinal dysfunction in children with autism spectrum disorders. To date, there is no conclusive evidence that the prevalence of gastrointestinal disturbance is elevated in individuals with autism above the general population. The reports of prevalence range from 9%, similar to the typical population, to 84%, most likely secondary to variations in methodology (Buie et al. 2010). Two recent stud-ies again show mixed results. One recent population-based study examined the medical records

stud-ies again show mixed results. One recent population-based study examined the medical records of children with ASD and age/gender-matched controls using data from the Rochester Epidemiology Project, which captures detailed medical charts from more than 95% of the resi-dents of Olmsted County, Minnesota. Their find-ings indicate that the overall cumulative incidence of gastrointestinal symptoms in children with ASD was not increased above controls, although there was a statistically

symptoms in children with ASD was not increased above controls, although there was a statistically significant increase in the cumulative incidence of constipation and feeding selectivity in children with ASD above controls. It is unclear whether the increase in constipation and food selectivity was due to gastrointestinal or neurobehavioral differences. The retrospective nature of data collection, with data being collected from medical records completed in the past, and the homogeneity of the

with data being collected from medical records completed in the past, and the homogeneity of the racial and ethnic compo-sition of Olmsted County (i.e., 98% of the popu-lation is reported to be white) limit the findings (Ibrahim et al. 2009).

Another recent study is the only report to date to examine gastrointestinal problems in children with autism spectrum disor-ders from families with multiple affected mem-bers. Via a structured medical history interview, data regarding gastrointestinal problems was col-lected on 589 children with ASD, verified by gold standard measures, and 163 sibling controls from 313 families. The authors found increased paren-tal report of gastrointestinal problems in children diagnosed with an autism

found increased paren-tal report of gastrointestinal problems in children diagnosed with an autism spectrum disorder (42%) versus their unaffected siblings (12%), with chronic diarrhea and constipation the most frequently reported. Inclusion of a novel severity ranking scale revealed increased odds of gastro-intestinal problems with increased severity of ASD symptoms, a finding that will require repli-cation. The retrospective nature of the data collec-tion, largely relying on recall, limited

repli-cation. The retrospective nature of the data collec-tion, largely relying on recall, limited the findings. Similarly, the inclusion of unaffected siblings may have introduced an additional bias as the children with ASD may have had increased medical visits and scrutiny leading to an increased identification of symptoms over their typically developing sib-lings (Wang et al. 2011). The specificity of the endoscopic and histo-logic findings in the intestine, namely, ileal lym-phoid nodular

of the endoscopic and histo-logic findings in the intestine, namely, ileal lym-phoid nodular hyperplasia (LNH), to autism has been controversial, particularly as LNH has been noted in typically developing children with con-stipation and food allergy (Buie et al. 2010; Erickson et al. 2005). Other methodological con-cerns, including inappropriate control groups and lack of validated definitions, make the findings difficult to interpret (Buie et al. 2010). The con-nection between autism and the MMR

the findings difficult to interpret (Buie et al. 2010). The con-nection between autism and the MMR vaccination has since been disproven (Hornig et al. 2008). The original article describing the endoscopic and his-tologic findings and the temporal relationship of the onset of symptoms of autism to injection of the MMR vaccine has now been retracted due to false claims regarding how the study was conducted (Harris 2010; Wakefield et al. 2010). Although inflammation of the gastrointestinal tract has

(Harris 2010; Wakefield et al. 2010). Although inflammation of the gastrointestinal tract has been noted in children with autism spectrum disor-ders (Erickson et al. 2005; Horvath and Perman 2002), an autism-specific abnormality has not been established (Buie et al. 2010). There is also conflicting evidence regarding the opiate excess theory. Studies examining the pres-ence of excess opioid-like compounds in the cere-brospinal fluid and urine of individuals with ASD have revealed no consistent

compounds in the cere-brospinal fluid and urine of individuals with ASD have revealed no consistent patterns (Cass et al. 2008; Ibrahim et al. 2009; White 2003). The clin-ical trials examining the efficacy of opiate antag-onists in the treatment of ASD reported, at most, small benefit, principally in hyperactivity and self-injurious behaviors (Christison and Ivany 2006; Horvath and Perman 2002). Further, dietary elimination studies of gluten and casein showed mixed results. To date, there are only

dietary elimination studies of gluten and casein showed mixed results. To date, there are only a few published randomized control trials (which are the most reliable form of scientific evidence in intervention studies) of gluten and casein elimina-tion diets. The results are mixed with some gen-eral improvements noted on the diet in two of the three studies. However, methodological issues render the results difficult to interpret (Millward et al. 2009; Whitely et al. 2010). One small study was

the results difficult to interpret (Millward et al. 2009; Whitely et al. 2010). One small study was presented at the International Meeting for Autism Research in 2010 and reported on wheat and milk challenges in children with ASD placed on a gluten and casein elimination diet, finding no significant difference in outcome measures. While this was a randomized, blinded trial, the sample size was small (Hyman et al. 2010). Conse-quently, there is no current clear evidence on whether the gluten-free,

(Hyman et al. 2010). Conse-quently, there is no current clear evidence on whether the gluten-free, casein-free diet is effec-tive in ameliorating symptoms of ASD.

Research regarding a genetic predisposition involved in increased intestinal permeability in individuals with ASD is still preliminary. A recent study extended the findings of increased intestinal permeability to first-degree relatives of individuals with ASD, implying a genetic factor may be involved (de Magistris et al. 2010). The work regarding the gene encoding the MET recep-tor tyrosine kinase may imply that genetic factors contribute separately to gastrointestinal and neurobehavioral

kinase may imply that genetic factors contribute separately to gastrointestinal and neurobehavioral symptoms in individuals with ASD (Campbell et al. 2009). However, additional studies are needed before any firm conclusions can be made. In conclusion, increased intestinal permeabil-ity has been documented in certain medical con-ditions such as inflammatory bowel disease and celiac disease. It has been hypothesized to play a role in psychiatric disorders such as schizophre-nia. Further, intestinal

hypothesized to play a role in psychiatric disorders such as schizophre-nia. Further, intestinal permeability has been reported to be increased in children with autism spectrum disorders leading to etiologic theories, including the leaky gut-opioid excess theory. To date, there is preliminary supportive evidence for altered intestinal permeability in children with autism spectrum disorders. Conclusions regarding whether this potential difference plays a role in the gut-brain axis and is

Conclusions regarding whether this potential difference plays a role in the gut-brain axis and is therefore either causative of autism spectrum disorders or increases symptoms of ASD cannot be made. At this time, there is very little data to support the opioid excess theory or a gastrointestinal pathology specific to ASD.

### Future Directions  Large prospective studies with appropriate control groups that take into account factors such as die-tary intake and comorbid psychiatric conditions (e.g., anxiety and depression), which may play a role in functional gastrointestinal problems, are needed to further characterize gastrointestinal dif-ferences in children with ASD. Research targeting potential interventions in autism spectrum disor-ders need to encompass large, properly controlled trials with well-defined

in autism spectrum disor-ders need to encompass large, properly controlled trials with well-defined outcome measures. It is also important that researchers studying gastroin-testinal abnormalities and intestinal permeability adequately characterize the sample with appropri-ate autism diagnostic measures. Given the hetero-geneity of ASD, describing the subjects in terms of both gastrointestinal symptoms/disorders using standardized definitions and the developmental/ behavioral phenotype may shed

using standardized definitions and the developmental/ behavioral phenotype may shed light on the dif-ference between children with and without altered intestinal permeability.

### See Also  *   Gastrointestinal Disorders and Autism *   Measles and Autism  ## Learned Helplessness  ### Definition  A state in which animals and humans act as if events are outside of their control, and so do not try to escape from unpleasant conditions that they could otherwise easily avoid. This state is created by being repeatedly exposed to an aversive stimulus from which escape is impossible, and this state is then generalized to other stimuli. It is believed to contrib-ute to

impossible, and this state is then generalized to other stimuli. It is believed to contrib-ute to depression and other related conditions.

### Historical Background  The phenomenon of learned helplessness was described following a series of experiments led by Seligman and his colleagues beginning in 1967, first involving dogs and rats (Seligman 1968), and then involving humans (Miller and Seligman 1973). In humans, learned helplessness was manifested as a perception that events were outside of the individual’s control. This character-ization of depressions was central to interventions which subsequently focused on changing

of depressions was central to interventions which subsequently focused on changing cogni-tions surrounding the individual’s perception of themselves, their actions, and the future. A database search of the key terms “autism” and “learned helplessness” revealed very few refer-ences to both terms, and so we have integrated past and present discussions related to autism and developmental disabilities under “Current Knowledge.”

### Current Knowledge  Learned helplessness was first discussed more extensively in the peer-reviewed literature on ASD when speaking to the challenge of motivat-ing children exposed to repeated failure. Behavior analysts had postulated that the increased oppor-tunity to access reinforcement that results from correct completion of a task should motivate the child to devote increased effort to completing other tasks. Koegel and Egel (1979) provided perhaps the earliest and most specific test of

other tasks. Koegel and Egel (1979) provided perhaps the earliest and most specific test of this hypothesis. They examined the level of interest and persistence evident in three young children with autism when presented with a series of fine motor tasks. Using a multiple baseline design, performance was compared under conditions of no prompts (pretreatment condition) and verbal and gestural prompts (treatment condition). Dur-ing the pretreatment condition, children had low levels of task

prompts (treatment condition). Dur-ing the pretreatment condition, children had low levels of task completion and interest, and decreasing attempts over time. In contrast, during posttreatment conditions, when prompting levels were comparable to pretreatment conditions, two of the three children demonstrated sustained improvements in interest and in the number of attempts relative to pretreatment levels. Subse-quent trials and conditions for the third child revealed that these improvements were

levels. Subse-quent trials and conditions for the third child revealed that these improvements were only evi-dent when he was successful at least 50% of the time; otherwise, attempts dropped dramatically in frequency. The authors framed these findings as demonstrating learned helplessness: Low rates of success masked the potential relationship between effort and outcome or, in behavioral terms, between response and reinforcement. Creating conditions for success made the response-reinforcement

between response and reinforcement. Creating conditions for success made the response-reinforcement relationship more salient, and thus made children more likely to persist when initially unsuccessful. The potential disconnection between response and reinforcement was striking for the third child, for whom high levels of rein-forcement were at times almost unrelated to effort. As the oldest of the three participants, he was the most likely to have experienced learned helplessness.

The Koegels returned to the role of learned helplessness at later points (Koegel and Mentis 1985). They suggested that teaching self-management skills to persons with ASD and other disabilities may help them to better under-stand the relationship between their own behavior and outcomes, and inoculating them against learned helplessness (Koegel et al. 1995). They also postulated that learned helplessness was cen-tral to understanding the potential effectiveness of pivotal response training or

was cen-tral to understanding the potential effectiveness of pivotal response training or PRT (Koegel et al. 2001): “pivotal response interventions that emphasize relations between social communica-tive responses and their positive consequences appears to increase motivation to respond, thereby improving responsivity and increasing favorable environmental and social stimulation and interac-tion.” (Koegel et al. 2001, p. 21). Learned help-lessness may be a natural outcome of other difficulties

(Koegel et al. 2001, p. 21). Learned help-lessness may be a natural outcome of other difficulties faced by children with autism (e.g., the difficulty processing complex stimuli) within the first 18 months of life. Instead of seeking to initiate interactions with the environment, fueled by a response-reinforcer relationship growing in strength with each success, children with autism withdraw, effectively decreasing the num-ber and type of learning opportunities available to them. The potential for

decreasing the num-ber and type of learning opportunities available to them. The potential for disruption of the response-reinforcer relationship may be particu-larly evident with respect to the deficits in social communicative interactions that are a hallmark of autism. The social and communicative exchanges that naturally emerge in exchanges between typi-cal toddlers and adults (i.e., in the form of requesting, joint attention, social play, and other socio-affective interactions, etc.) simply

of requesting, joint attention, social play, and other socio-affective interactions, etc.) simply do not occur in many children with autism or, if they do, only emerge later in development and at much lower rates. By the time autism is identified and intervention begins, the lack of persistence in the face of failure has already had a cascading effect on the number and type of learning oppor-tunities available to the child with autism, espe-cially with respect to social communicative

oppor-tunities available to the child with autism, espe-cially with respect to social communicative interactions. Yet, just as learned helplessness can disempower the young child with autism, PRTcan function (among other things) to reestablish the response-reinforcer relationship. The emphasis in PRT on self-initiation and self-management, on adaptations to help children respond to multiple cues and on the increase in motivation more gen-erally, has an impact on the specific skills being taught,

on the increase in motivation more gen-erally, has an impact on the specific skills being taught, and on the child’s perception of them-selves as an effective agent in their interactions with their environment. Learned helplessness has also been discussed in the context of depression and ASD. Barnhill and Myles (2001) found the same relationship between attributional style and depression among adolescents with Asperger syndrome, as is evident in other populations, namely, that depression is

adolescents with Asperger syndrome, as is evident in other populations, namely, that depression is associated with a style in which the person blames themselves for negative events and outcomes, across contexts and time. These authors also suggested that positive behavior sup-ports, which emphasize proactive interventions to prevent errors, may help to counter this negative attributional style.

### Future Directions  At present, it is unclear how the relationship between learned helplessness and autism will be considered by future researchers and clinicians. The recognition of PRT as an evidence-based practice, and of depression as an area of concern for adolescents and adults with ASD, suggests that an interest in learned helplessness may be rekindled among researchers and clinicians seek-ing to help all persons affected by ASD. Researchers and clinicians may also consider

seek-ing to help all persons affected by ASD. Researchers and clinicians may also consider revisiting early research suggesting that learned helplessness is related to intellectual disability (Weisz 1979), and may be influenced by adult expectations and feedback (Raber and Weisz 1981; Weisz 1981).

### See Also  *   Depressive Disorder *   Motivation *   Pivotal Response Training *   Reinforcement *   Reinforcer  ## Learning Disabilities  *   ▶Learning Disorders  ## Learning Disability  ### Synonyms  Language-based learning disability; Learning disorder; Specific learning disability; Specific learning disorder

### Short Description or Definition  Learning disability is a term used to describe a heterogeneous group of disorders characterized by significant challenges in acquiring and using listening, speaking, reading, writing, reasoning, and/or mathematical abilities. A learning dis-ability is considered intrinsic to the individual and is related to underlying neurological differ-ences. Although it can co-occur with other dis-abilities and can be affected by environmental influences, it is not the

can co-occur with other dis-abilities and can be affected by environmental influences, it is not the direct result of these conditions or influences. The National Joint Committee on Learning Disability (NJCLD) has also used the term to represent the discrep-ancy that might exist between an individual’s capacity to learn and their actual achievement level (National Research Center on Learning Disability 2010). Children with learning disabilities have unique educational needs because they approach

2010). Children with learning disabilities have unique educational needs because they approach learning in different ways. Learning disabilities often have a lan-guage basis, and some children may be identified as having a language-based learning disability (Sun and Wallach 2014). The term learning disability is not used in the DSM-5 (American Psychiatric Association [APA] 2013). Instead, specific learning disorders is the term used to characterize challenges in the acqui-sition and use of one or

disorders is the term used to characterize challenges in the acqui-sition and use of one or more areas of academic performance. These challenges must persist for at least 6 months whether or not intervention has been provided. Considering the most recent research, the DSM-5 expands the definition some-what to account for persistent difficulties in read-ing, writing, arithmetic, and/or mathematical reasoning during formal schooling. Children with specific learning disorders are likely to approach

reasoning during formal schooling. Children with specific learning disorders are likely to approach reading in a slow and effortful manner with frequent inaccuracies (APA 2013; National Center for Learning Disabilities 2014). Their abil-ity to understand what they read might also be compromised. Writing lacks clarity and organiza-tion, while solving mathematical problems and remembering number facts are difficult. Aca-demic skills fall well below the expected level for a child’s chronological age

are difficult. Aca-demic skills fall well below the expected level for a child’s chronological age and cannot be explained by other developmental, neurological, vision, hearing, or motor disorders (APA 2013; NCLD 2014).

### Categorization  There are several descriptions of the varying cat-egories and classifications of learning disabilities. Learning disabilities are often grouped by an area of skill or cognitive weakness and are typically the result of challenges in the ability to process infor-mation in spite of intelligence in the average or above average range. Information processing is critical to learning and requires an ability to take in and decode information (input), integrate that information into

and requires an ability to take in and decode information (input), integrate that information into what a person already knows or is experiencing, storing that information so it can be easily retrieved to facilitate future understand-ing, and encoding a response (output). Potential challenges in each of these four areas that affect learning are summarized in Table 1.

| Levels of information processing | Learning issues for individuals with learning disabilities

|

| :------------------------------- |

:------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

|

| Input level                      | Difficulty with visual perception causing recognition problems Sequencing challenges affecting temporal processing Challenges in auditory perception impacting ability to determine the relevance of auditory stimuli Problems processing tactile information

|

| Integration level                | Difficulty telling a story in sequence Problems remembering rote information like days of the week Challenges in generalizing new learning Problems with comprehension

|

| Storage level                    | Problems with short- and long-term memory or working memory challenging new learning Difficulty with visual memory affecting spelling

|

| Output level                     | Challenges in the formulation of words, gestures, writing, or drawing Difficulty with spoken language including answering questions on demand, retrieving vocabulary, organizing thoughts prior to speaking or writing Problems with motor output affects written language, physical activity (e.g., riding a bicycle), and daily living or self-help skills (e.g., tying shoes)

|

The DSM-IV-TR and the DSM-5 (APA 2000, 2013) specifically identify three disorder areas that would be considered under the category of learning disabilities or learning disorders (see Table 2 for a description). A diagnosis in any one or more of these categories would qualify a student for support indicating they cannot access, interpret, and formulate learning in an expected manner. The DSM-5 (APA 2013) also describes three severity levels (mild, moderate, severe) for children with learning

(APA 2013) also describes three severity levels (mild, moderate, severe) for children with learning disorders, highlighting likely difficulties and the level of intervention support required. Although not part of the learning disorders described in the DSM-5, nonverbal learning dis-ability (NLD) is another category that has often been used to describe students with a specific profile of learning strengths and deficits. Rourke suggests NLD represents a cluster of neuropsy-chological, academic, and

and deficits. Rourke suggests NLD represents a cluster of neuropsy-chological, academic, and social emotional char-acteristics reflecting deficiencies in nonverbal processing and reasoning (Rourke and Tsatsanis 1996; Rourke et al. 2002). Generally, children with NLD exhibit assets in repetitive motor skills, learning through repetition and the auditory modality, verbal memory, receptive language, phonemic awareness, word decoding, and spell-ing. Deficits, however, are notable in visual

language, phonemic awareness, word decoding, and spell-ing. Deficits, however, are notable in visual dis-crimination, visual-spatial organization, problem solving, pragmatics, mechanical math, reading comprehension, and social perception. Their chal-lenges in social judgment, interaction, and emo-tion recognition compromise their abilities to maintain relationships with peers (Volden 2004).

| Learning disorder        | Description

| Other terms used

| Other terms used                                                                                                                                                                                                               |

| :----------------------- |

:------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

| :--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- |

| Reading disorder         | Difficulty with letter and word recognition Poor phonemic awareness or phonological awareness (e.g., the ability to break up words into sounds, matching letters to sounds) Difficulty understanding words and ideas or reading comprehension Slower reading speed and poorer fluency Weak vocabulary skills

| Dyslexia or developmental dyslexia – typically used to represent difficulties in word recognition and

or developmental dyslexia – typically used to represent difficulties in word recognition and not the broader areas described for reading disorder which includes reading comprehension                             |

| Mathematics disorders    | Difficulties learning math concepts (such as quantity, place value, and time) Problems remembering math facts Challenges organizing numbers and math problems

| Dyscalculia – difficulty understanding math problems and time concepts, and using money

difficulty understanding math problems and time concepts, and using money                                                                                                                                 |

| Disorder of written expression | Difficulties with handwriting, spelling, organization of ideas, and composition

| Dysgraphia – difficulty with handwriting; problems forming letters or writing within a defined space

– difficulty with handwriting; problems forming letters or writing within a defined space                                                                                                                      |

| Learning disorder not otherwise specified | May include problems in reading, math, and written expression that interfere with academic achievement even though test performance is not below age, IQ, or education level

|

|

### Epidemiology  The National Institutes of Health and Centers for Disease Control and Prevention (2011) report about 15% of Americans, or one in seven, have some type of learning disability. The actual prev-alence across academic areas ranges from 5 to 15% for school-age children (American Psychiat-ric Association 2013) with all cultures and lan-guage groups affected. More recent data for the 2013–2014 school year from the National Center for Education Statistics indicates more than 13% of

2013–2014 school year from the National Center for Education Statistics indicates more than 13% of school children (ages 3–21) are receiving spe-cial education services. Of all children currently receiving services, 35% have learning disabilities, and a majority of those children have reading as their primary academic challenge (Moats and Lyon 1993; U.S. Department of Education 2001; 2015). Learning disabilities often have a familial risk. There appears to be equal gender representa-tion with

disabilities often have a familial risk. There appears to be equal gender representa-tion with as many girls as boys having a learning disability, although the actual number of boys versus girls being served is different with more boys identified for and receiving services than girls (Bandian 1999; Coutinho and Oswald 2005).

### Natural History, Prognostic Factors, and Outcomes  The learning disabilities field evolved from the influence of professionals and parents who were seeking an educational philosophy that would be responsive to the learning style and unique strengths and challenges of individual children (Smith 1998). The desired focus was that teachers would emphasize what a child could do and not just what they could not do. Through a variety of advocacy efforts (at both a federal level and a parent and

they could not do. Through a variety of advocacy efforts (at both a federal level and a parent and professional organization level), a new disability category emerged in special educa-tion. Federal legislation giving all children the right to an equal education stimulated growth in the field, and the enactment of P.L. 94–142 in 1975 assured special services for all children with disabilities. This was the first time children with learning disabilities were among those iden-tified as disabled

This was the first time children with learning disabilities were among those iden-tified as disabled (Smith 1998). A reenactment of P.L. 94–142 in 1990 as the Individuals with Dis-abilities Education Act (IDEA; PL 101–476) advanced special services for students with dis-abilities, and the workforce saw growth in teachers prepared in learning disabilities as well as universities developing training programs in learning disabilities. A reauthorization of IDEA in 2004, now called the Individuals

programs in learning disabilities. A reauthorization of IDEA in 2004, now called the Individuals with Disabil-ities Education Improvement Act (IDEIA), offered an alternative approach to identifying chil-dren with learning disabilities. In the past, a learn-ing disability was determined by an assessed discrepancy between achievement and intellectual ability in reading or reading comprehension, oral or written expression, mathematical calculation or reasoning, or listening comprehension. A change

or written expression, mathematical calculation or reasoning, or listening comprehension. A change was made because of a lack of evidence that the IQ-achievement discrepancy formulas are consis-tently and reliably applied. Further, this approach has been problematic for students in poverty or those with culturally and linguistically different backgrounds. The alternative approach to identi-fying whether or not a child has a learning disabil-ity is a response to intervention approach. This

whether or not a child has a learning disabil-ity is a response to intervention approach. This approach incorporates an evaluation of how a child responds to scientifically based intervention before making a determination if, in fact, the child has a learning disability.

Research has examined potential predictors of learning disability, including motivation (e.g., goal orientation, self-efficacy, self-concept, goal commitment, motivational force), metacognition (i.e., one’s ability to monitor and control one’s own learning), and psychopathology (e.g., depres-sion and anxiety) (Sideridis et al. 2006). Results indicate that motivation is highly accurate in iden-tifying students with or at risk for a learning disability with metacognition and psychopathol-ogy as

students with or at risk for a learning disability with metacognition and psychopathol-ogy as strong predictors. Understanding these processes may facilitate our ability to more accu-rately screen and treat students with LD. Although the causes of learning disabilities are unclear, it is noteworthy that learning disabil-ities tend to run in families. Pregnancy problems and difficulties at birth, anomalies in brain devel-opment, exposure to toxins, and accidents fol-lowing birth are some examples

in brain devel-opment, exposure to toxins, and accidents fol-lowing birth are some examples of potential causal factors. A diagnosis of a learning disabil-ity has a significant impact on the family as it requires an understanding of the unique needs of the child and an ability to manage the learning, social, and behavioral challenges that often accompany the disorder. Learning disabilities impact an individual’s ability to manage across their lifespan, and effective coping methods are critical.

an individual’s ability to manage across their lifespan, and effective coping methods are critical. Recent gains have been made in brain research examining the neuroplasticity of the brain and the role of brain-behavior findings in our understand-ing of disorders such as learning disabilities. The brain’s ability to change and create new connec-tions encourages applied research that examines the impact of evidence-based treatments on learn-ing and increasing neuronal connections. In the right

impact of evidence-based treatments on learn-ing and increasing neuronal connections. In the right learning contexts, the brain might have an ability to reorganize old connections and create new connections that increases the ease of learn-ing to read, write, or complete math calculations.

### Clinical Expression and Pathophysiology  It is important to pay attention to normal develop-mental milestones for toddlers and preschoolers as early identification of developmental differences may be an early sign of a learning disability. Individuals with learning disabilities do not con-stitute a homogeneous group as the observed def-icits occur in one or more domains of academic achievement including reading, math, and written expression (Fletcher et al. 2007). To understand the clinical

including reading, math, and written expression (Fletcher et al. 2007). To understand the clinical expression and pathophysiology of a learning disability, it is important to recognize the potential influences on outcomes, which have var-iable expression. For example, there are neurobi-ological factors such as genetic profiles and brain structure and function differences that influence expression of the disorder. Environmental factors such as socioeconomic status, the amount and level of

of the disorder. Environmental factors such as socioeconomic status, the amount and level of schooling, as well as the types of inter-ventions received will affect outcomes. In addi-tion, core cognitive processes (e.g., phonemic awareness) and behavioral/psychosocial factors (e.g., motivation, anxiety, attention) will have an impact on the characterization of the disorder for individual students. Thus, the traits that are described for learning disability or learning dis-order exist on a

Thus, the traits that are described for learning disability or learning dis-order exist on a continuum. In the preschool years, some potential markers of a learning disability might be delayed speech and language, poor vocabulary growth, difficulty with phonological awareness (e.g., rhyming words, learning numbers, and letters), trouble fol-lowing directions, difficulty with peers, and slow fine motor development. During early elementary school, some warning signs might be slower abil-ity to

motor development. During early elementary school, some warning signs might be slower abil-ity to connect sounds and letters, confusion with basic concepts, consistent reading and spelling errors, reversing letters or numbers, difficulty remembering math facts and telling time, and poor coordination. In the later grades, letter sequence reversals, difficulty with morphology (e.g., prefixes, suffixes, root words) and handwrit-ing, avoidance of reading aloud and writing, poor recall, and difficulty

root words) and handwrit-ing, avoidance of reading aloud and writing, poor recall, and difficulty making friends are likely behaviors. Early intervention can reduce the number of children who qualify as learning disabled (Sternberg and Grigorenko 1999, 2001). Although the provision of classroom accommo-dations supports the learning environment for stu-dents with learning disabilities, Sternberg suggests that schools often fail to recognize chil-dren’s range of strengths and challenges, and

suggests that schools often fail to recognize chil-dren’s range of strengths and challenges, and instructional approaches may not be well suited to children’s different learning styles. An inte-grated approach to identifying and supporting the needs of individuals with learning disability is recommended (Bradley et al. 2002; Fletcher et al. 2007). This approach considers the value of a response to instruction model for identifying children at risk, evaluating instructional quality and

to instruction model for identifying children at risk, evaluating instructional quality and monitoring progress over time. It also iden-tifies what to do when an inadequate response to instruction occurs. An integrated approach defines a path for more formal assessment in the learning domains as well as a comprehensive evaluation that probes potential language, social, and home factors that could produce underachievement (Bradley et al. 2002).

### Evaluation and Differential Diagnosis  The process of diagnosing a learning disability is challenging as it requires not only accurate testing but also comprehensive data collection through a variety of sources. It involves testing, history tak-ing, and observation by a trained specialist. Sev-eral professionals may be involved in the evaluation process, including a psychologist or neuropsychologist, an occupational therapist, a speech-language pathologist, and a special educa-tor to name

an occupational therapist, a speech-language pathologist, and a special educa-tor to name a few. During the diagnostic process, a number of professionals may be involved in coor-dinating efforts to obtain an accurate diagnosis which includes input from teachers, parents, and the student. Currently, two approaches are used to identify learning disabilities: the IQ-achievement discrep-ancy approach and the response to intervention approach (RTI). In the IQ-discrepancy approach, intelligence and

and the response to intervention approach (RTI). In the IQ-discrepancy approach, intelligence and academic achievement testing, classroom performance, and social interaction are assessed. In addition, some students may receive speech-language and attention testing. Assessment results determine if a student’s aca-demic performance is commensurate with cogni-tive ability. If cognitive ability or potential (as measured on an intelligence test) is well above a student’s academic performance, then a

(as measured on an intelligence test) is well above a student’s academic performance, then a diagnosis of a learning disability is made. Recently, however, this approach to diagnosis has been criticized because there is little evidence that the measured discrepancy is an indication of LD nor does it predict treatment effectiveness (Aaron 1995; Barnes et al. 2007; Harrison and Flanagan 2005). In the response to intervention (RTI) approach, the diagnostic process is more treatment oriented. All

the response to intervention (RTI) approach, the diagnostic process is more treatment oriented. All students are screened early on, and those demonstrating some difficulty receive research-based instruction prior to any identification of learning disability. Performance is monitored to determine if providing increas-ingly intense intervention facilitates the student’s progress. Those who respond well to this inten-sive research-based instruction will not require further intervention or diagnosis,

to this inten-sive research-based instruction will not require further intervention or diagnosis, while those who do respond to regular classroom instruction (Tier 1 support) or intensive instruction (Tier 2 support) are referred to special education and are usually diagnosed with a learning disability. A benefit to this diagnostic approach is there is no waiting for the student to fail prior to receiving assistance. The 2004 reauthorization of the Indi-viduals with Disabilities Education Act

receiving assistance. The 2004 reauthorization of the Indi-viduals with Disabilities Education Act permitted states and school districts to use RTI as a method of identifying students with learning disabilities. Notably, this process does not consider individual neuropsychological factors that are often used to design instruction, it takes longer to implement the traditional approaches to assessment, it requires implementation of a strong intervention program, and it is driven by general

it requires implementation of a strong intervention program, and it is driven by general education versus special education (Fletcher et al. 2007).

In the traditional approach to evaluation and diagnosis, several normed assessment tools are used to evaluate a student’s academic perfor-mance and achievement. The primary academic domains that are assessed include reading, math and written expression, and achievement tests such as the Woodcock-Johnson 4th edition (WJ IV), the Wechsler Individual Achievement Test 3rd edition, the Wide Range Achievement Test 3rd edition, and the Stanford Achievement Test 10th edition. Specialized reading

Achievement Test 3rd edition, and the Stanford Achievement Test 10th edition. Specialized reading assessment might also include Gray’s Diagnostic Reading Tests 2nd edition, the Stanford Diagnostic Read-ing Assessment 4th edition, the Comprehensive Test of Phonological Processing, Tests of Oral Reading and Comprehension Skills, the Test of Reading Comprehension 4th edition, the Test of Word Reading Efficiency 2nd edition, and the Test of Silent Contextual Reading Fluency 2nd edition.

Word Reading Efficiency 2nd edition, and the Test of Silent Contextual Reading Fluency 2nd edition. Comprehensive assessment is certainly a require-ment for intervention as well as helping to deter-mine the contexts in which difficulties are experienced, including the coexistence of lan-guage and behavioral challenges. It is important to recognize that other disorders are often confused with learning disorders and some may co-occur. Typically, those individuals with an intelligence level below 70

disorders and some may co-occur. Typically, those individuals with an intelligence level below 70 on a standard-ized intelligence test would be characterized as having an intellectual disability (formerly catego-rized as mental retardation) and would not also be diagnosed with a learning disability, although learning will be comprised for this population because of the identified cognitive impairment. Attention deficit hyperactivity disorder (ADHD) and receptive and expressive language disorders

Attention deficit hyperactivity disorder (ADHD) and receptive and expressive language disorders often co-occur with learning disabilities, although these disorders are not included in the standard definition of learning disabilities. A child with an attention problem often struggles with learning because of their inability to sufficiently focus on relevant stimuli and organize their responses. A child with a language disorder has difficulties at the core of learning disabilities, affecting

A child with a language disorder has difficulties at the core of learning disabilities, affecting listening comprehension and oral and written expression as well as pragmatic language function. All three disorders share executive func-tion challenges and impact an individual’s ability to communicate. These shared clinical manifesta-tions complicate differential diagnosis. Children with learning disabilities are also likely to have language and social challenges. For example, a nonverbal learning

are also likely to have language and social challenges. For example, a nonverbal learning disability has a significant impact on an individual’s ability to “read” facial and gestural cues during social inter-action (Manoach et al. 1995; Rourke 1989). This can lead to odd and poor social behavior. Research is ongoing to determine the overlap or separation of NLD and ASD (Rourke 2000).

### Treatment  National Institutes of Health (NIH) research sug-gests that 67% of students considered at risk for reading failure achieve average or above average reading performance following intervention in the early grades. As previously described, a new approach or conceptual model for intervention (i.e., response to intervention) is being applied to students with a learning disability so that a school team can determine if a child responds to scien-tific, research-based instruction as

that a school team can determine if a child responds to scien-tific, research-based instruction as early as possi-ble. A primary focus of RTI is to identify the instructional challenges resulting from the learn-ing disability and then implement high-quality instruction by well-trained educators to differen-tiate those children with a true disability and those with learning differences. Treatment for individuals with LD involves a partnership with all team members including a case manager who

for individuals with LD involves a partnership with all team members including a case manager who implements the assessment process and coordinates the student’s program; a special educator with credentials to support the specific educational needs of the student; a neu-rologist to address concerns about brain function and the implications on learning; a speech-language pathologist who provides support for speech, language, and social communication dif-ficulties; and a psychologist who assesses

for speech, language, and social communication dif-ficulties; and a psychologist who assesses psycho-logical and intellectual development and guides treatment for behavior difficulties and mental and emotional health. Several interventions are described in the liter-ature, and several examples are summarized in Table 3.

| Examples of interventions                                      | Description                                                                                                                                                                                                                                                                                                                                           |

| :------------------------------------------------------------- | :---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- |

| Direct instruction (National Institute for Direct Instruction 2007) | Highly structured, individualized, and intensive instruction usually one-on-one occurring on a daily basis; lessons are preplanned to ensure small learning successes and identifying, and correcting mistakes immediately; progress monitoring is ongoing                                                                                                   |

| Environmental arrangement or classroom adjustments             | Modified assignments and testing procedures, preferential seating, quiet space to study and take tests, increased time for assignment or testing completion                                                                                                                                                                                             |

| Special equipment or learning materials                        | Access to word processors with spell checkers, voice output devices that use text to speech and speech to print programs, calculators, books on tape, etc.                                                                                                                                                                                              |

| Classroom supports                                             | Notetakers, readers, proofers, scribes, instructional assistants, or paraeducators to support on task behavior and vigilant responsiveness                                                                                                                                                                                                          |

| Special education                                              | Specified hours or placement in a resource room, enrollment in an LD program, IEP, and related therapies                                                                                                                                                                                                                                          |

| Speech-language pathologist                                    | Addresses gaps in learning such as reading comprehension, pragmatics, written language                                                                                                                                                                                                                                                                |

### See Also  *   Learning Disorders *   Nonverbal Learning Disabilities (NLD)  ## Learning Disability (UK)  *   ▶Mental Retardation  ## Learning Disability (United Kingdom)  *   ▶Intellectual Disability  ## Learning Disorder  *   ▶Learning Disability  ## Learning Disorders  ### Synonyms  Learning disabilities  ### Short Description or Definition  According to the DSM-IV-TR, a learning disorder can be diagnosed “. . .when the individual’s achievement on individually administered, stan-dardized

be diagnosed “. . .when the individual’s achievement on individually administered, stan-dardized tests in reading, mathematics, or written expression is substantially below that expected for age, schooling, and level of intelligence. The learning problems significantly interfere with aca-demic achievement or activities of daily living that require reading, mathematical, or writing skills.” The legal definition of a learning disorder has remained unchanged since 1977; according to the U.S.

The legal definition of a learning disorder has remained unchanged since 1977; according to the U.S. Department of Education, a specific learning disability is “a disorder in one or more of the basic psychological processes involved in using language, spoken or written, which. . .may manifest itself in the imperfect ability to listen, think, speak, read well, or do mathematical calculations.”

### Categorization  In general, educators use the term learning dis-ability while the medical community uses the diagnosis learning disorder. The U.S. Depart-ment of Education (1977) defines a learning dis-ability as a severe, unexpected discrepancy between achievement and intellectual capacity in one or more of the following areas: (1) oral expression, (2) listening comprehension, (3) written expression, (4) basic reading skills, (5) reading comprehension, (6) math calculation, or (7)

expression, (4) basic reading skills, (5) reading comprehension, (6) math calculation, or (7) mathematical reasoning. The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR; American Psychiatric Association [APA] 2000) includes the following learning disorders: read-ing disorder, mathematics disorder, disorder of written expression, and learning disorder not otherwise specified. Diagnosed difficulties with oral expression and listening comprehension

not otherwise specified. Diagnosed difficulties with oral expression and listening comprehension would be captured by communication disorder diagnoses: expressive language disorder, mixed receptive-expressive language disorder, phono-logical disorder, stuttering, or communication disorder not otherwise specified.

### Epidemiology  Estimates of the prevalence of learning disorders range from 2% to 10% depending on definitions and how they are applied (APA 2000). According to Gregorenko (2007), prevalence rates for learn-ing disabilities range from 5% to 12% of the total school-age population. When comparing the number of children who are receiving special ser-vices with the total school-age population, the prevalence rate is approximately 5–6% of the total school-age population. These estimates indi-cate

prevalence rate is approximately 5–6% of the total school-age population. These estimates indi-cate that LDs are observed more frequently in boys than in girls and more frequently in under-represented minority groups than in Asian Amer-icans or whites. This method of estimating prevalence rates is somewhat flawed, however, as it relies upon each state’s and school district’s approach to identification and service provision for children with learning disorders and the pro-portion of children

and service provision for children with learning disorders and the pro-portion of children served in different states varies widely. According to Gregorenko (2007), esti-mates derived from research studies suggest that up to 10–12% of school-age children show spe-cific deficits in selected academic domains. Pro-vision of high-quality classroom instruction and supplemental small-group instruction may reduce this number to approximately 6% of children. It is assumed that these children would meet

reduce this number to approximately 6% of children. It is assumed that these children would meet strict criteria for diagnosis of a learning disability.

### Natural History, Prognostic Factors, and Outcomes  Historically, children have not been identified as having a specific learning disability until second grade or later. This is, in part, due to the fact that these children have intact cognitive functioning and have not fallen significantly behind academ-ically in terms of age- or grade- based expecta-tions until that time (e.g., have demonstrated an ability-achievement discrepancy). In 2004 with the reauthorization of the Individuals with

an ability-achievement discrepancy). In 2004 with the reauthorization of the Individuals with Dis-abilities Act (IDEA), states and school districts were provided with the option of diagnosing learning disabilities using the traditional ability-achievement discrepancy model or an alternative strategy known as response-to-intervention (RTI). RTI is an educational strategy in which all chil-dren receive continuous monitoring of academic progress. Children who exhibit difficulties are provided with

continuous monitoring of academic progress. Children who exhibit difficulties are provided with evidence-based classroom remedi-ation strategies. If these strategies prove to be ineffectual, the child is provided with more intensive, small-group instruction. If the academic difficulties are not remediated at this level of intervention, the child is referred for special education services and considered to have a specific learning disability. Because this strategy does not rely on waiting for a

to have a specific learning disability. Because this strategy does not rely on waiting for a significant ability-achievement discrepancy to emerge before beginning to implement remediation strategies, intervention can begin at an earlier age in order to provide timely evidence-based remediation strategies and in an effort to prevent the develop-ment of other learning problems and comorbid disorders.

According to Mash and Wolfe (2005), about three quarters of children identified as having a reading disorder in elementary school still have major reading problems in high school and young adulthood. Children and adolescents with learn-ing disorders are more likely than their peers to evidence both internalizing disorders, such as anxiety and mood disorders, and externalizing disorders, such as attentional or compliance diffi-culties. The American Psychiatric Association (APA 2000) states that

attentional or compliance diffi-culties. The American Psychiatric Association (APA 2000) states that the school dropout rate for adolescents with learning disorders is nearly 40% or approximately 1.5 times the national aver-age. In addition, adults with learning disorders may have difficulty with employment and social adjustment. The APA estimates that 10–25% of individuals with learning disorders also have attention deficit hyperactivity disorder, opposi-tional defiant disorder, conduct disorder,

also have attention deficit hyperactivity disorder, opposi-tional defiant disorder, conduct disorder, major depression, or dysthymic disorder. Many adults with learning disorders are able to find ways to accommodate their disabilities, build upon their strengths, and excel in their fields of endeavor. E.E. Werner, as part of a longitudinal study of all children born in 1955 on the island of Kauai, Hawaii, found that most children with learning disabilities she followed adapted suc-cessfully to

Hawaii, found that most children with learning disabilities she followed adapted suc-cessfully to adult life. Those who showed the greatest resiliency had “(1) a basic temperament that elicited positive responses from others; (2) a well-developed sense of efficacy, preparedness, and self-esteem that guided their lives; (3) compe-tent caregivers and supportive adults; and (4) opportunities for a second chance when they made mistakes or got into trouble with the law. Although some of the

for a second chance when they made mistakes or got into trouble with the law. Although some of the characteristics are present at birth (e.g., temperament), many of the other sup-portive factors can be increased through the efforts of family members, schools, and commu-nities” (Mash and Wolfe 2005, p. 336).

### Clinical Expression and Pathophysiology  Learning disabilities are thought to have a neuro-biological basis, specifically atypicalities in brain maturation and functioning. According to Gregorenko (2007), the working assumption in the field is that genetic factors affect the develop-ment, maturation, and functional structure of the brain, which in turn influences cognitive pro-cesses associated with learning disorders. In addi-tion, external risk factors, such as poverty and lack of

with learning disorders. In addi-tion, external risk factors, such as poverty and lack of educational opportunities, affect patterns of brain functioning and development. These exter-nal factors may worsen the prognosis for a bio-logical predisposition for learning disabilities or serve as a trigger for their development.

### Evaluation and Differential Diagnosis  Current methods of diagnosing learning disorders involve individual psychological assessment and/or a response-to-intervention model. In the psychological assessment model, an individual’s cognitive and academic strengths and weaknesses are assessed through a comprehensive evaluation. If a severe discrepancy between the individual’s cognitive and academic functioning is found that cannot be explained by normal variation in aca-demic attainment, lack

functioning is found that cannot be explained by normal variation in aca-demic attainment, lack of opportunity, poor teach-ing, or cultural factors, then a learning disorder is suspected. Additionally, it is necessary to rule out impaired vision or hearing. It is possible to diag-nose learning disorders along with mental retardation, pervasive developmental disorder, or communication disorders when “academic impairment is significantly below expected levels given the individual’s intellectual

when “academic impairment is significantly below expected levels given the individual’s intellectual functioning and schooling” (APA 2000). The educationally based response-to-intervention model involves early, continuous monitoring of all children’s academic achievement. If children fall behind their peers, they are provided with high-quality research-based, small-group instruction and their progress is continually monitored. If, over time, this level of intervention is not sufficient to bring

is continually monitored. If, over time, this level of intervention is not sufficient to bring the child’s skills up to grade level, then the child is diagnosed as having a learning disability and provided with special education services.

### Treatment  Interventions for learning disorders are primarily educational, rather than medical, in nature. A direct behavioral instruction approach is often used; tasks are broken down into manageable steps with ample examples, practice, and feed-back. For example, Mash and Wolfe (2005) state that children with reading disorders must be taught phonemic awareness and phonemic decoding skills, fluency in word recognition, con-struction of meaning, vocabulary, spelling, and writing. When

fluency in word recognition, con-struction of meaning, vocabulary, spelling, and writing. When direct and explicit instruction in these components is provided, data show dramatic reductions in reading failure. According to Shaywitz (2003), the specific program chosen for remediation is less important than the fact that a scientifically proven program is provided by highly qualified teacher with sufficient inten-sity and for a sufficient length of time. Mash and Wolfe (2005) also indicate that

sufficient inten-sity and for a sufficient length of time. Mash and Wolfe (2005) also indicate that cognitive behav-ioral interventions have also been found to be useful for children with learning disorders, partic-ularly for tasks that involve monitoring one’s own thought processes. “Essentially, children are taught to ask themselves several questions as they progress, to make themselves more aware of the material. . . Why am I reading this? What’s the main idea the authors are trying to get

of the material. . . Why am I reading this? What’s the main idea the authors are trying to get across? Where can I find the answer to this question? How does this follow from what I learned a minute ago?” (Mash and Wolfe 2005, p. 342). Finally, computer-assisted learning programs have been found to be helpful in providing opportunities for practice, feedback, and drills.

### See Also  *   Educational Testing  ## Learning Experiences, an Alternative Program for Preschoolers and Their Parents (LEAP)

### Definition  Learning experiences, an alternative program (LEAP), is a model of early intervention that serves children with autism spectrum disorders (ASD) and typically developing children in an inclusive preschool setting. The program was developed to support the social and communicative skills of children with ASD through a peer-mediated approach (Strain and Bovey 2008). Typical children are taught to use a series of strategies to engage classmates with ASD in social interaction.

are taught to use a series of strategies to engage classmates with ASD in social interaction. Training involves explicit teaching, role play, adult cueing and scaf-folding, and positive reinforcement. Opportuni-ties for social engagement between typical peers and children with ASD occur within the context of a preschool curriculum designed to facilitate the learning and development of both typical children and those with ASD.

### Historical Background  The LEAP program was developed in 1981 by Dr. Phillip Strain. It began as a federally funded demonstration program in Pittsburgh, Pennsylva-nia, and was one of the first inclusive educational programs, serving children with ASD and their typical peers (Kohler et al. 1996). In 1984, LEAP began to set up replication sites, which provided general training to school districts across the United States and several foreign countries. In 1988, Douglas County, Colorado, became

across the United States and several foreign countries. In 1988, Douglas County, Colorado, became the pri-mary demonstration site for the LEAP program, and as of 2008 over 80 LEAP preschool programs had been established (Strain and Bovey 2008).

### Rationale or Underlying Theory  The LEAP program is based on current research suggesting that children with deficits in social communication benefit from peer-mediated inter-vention in an inclusive setting. To develop the social-communication skills that allow for the development of appropriate peer relationships, children with ASD must be provided with ade-quate opportunities to interact with typically developing peers (Strain et al. 1998). Inclusive classroom settings can be advantageous

typically developing peers (Strain et al. 1998). Inclusive classroom settings can be advantageous because opportunities for social interaction occur on a daily basis. However, Strain et al. (2008) point out that simply placing a child with ASD in an inclusive setting with typical peers does not in and of itself facilitate social interaction. Typically developing peers require instruction regarding how to interact with their classmates with ASD in order to maximize appropriate development of

how to interact with their classmates with ASD in order to maximize appropriate development of social communication. Strain and Bovey (2008) cite several studies indicating that typically devel-oping children as young as 36 months can be trained to use strategies that support the social communication of children with ASD, resulting in higher rates of communicative interactions, and that many children with ASD who participate in peer-mediated intervention eventually develop social-communication

with ASD who participate in peer-mediated intervention eventually develop social-communication skills that are considered developmentally typical.

### Goals and Objectives  The primary goal of the LEAP program is to support the development of appropriate social-communication skills through peer-mediated intervention. One of the core deficits of children with ASD described by The Diagnostic and Sta-tistical Manual of Mental Disorders-Fourth Edi-tion (DSM-IV; American Psychiatric Association 2000) is a qualitative impairment in social inter-action, which is frequently characterized by a failure to develop appropriate relationships with

which is frequently characterized by a failure to develop appropriate relationships with peers and a general lack of social reciprocity. The LEAP program incorporates explicit instruction in social-communication strategies into its general curriculum, and typical peers are trained to facil-itate the social communication of children with ASD.

### Treatment Participants  There are currently no set guidelines to determine eligibility to participate in the LEAP program. Because there is a primary focus on developing social-communication skills and fostering suc-cessful peer relationships, children who exhibit deficits in these areas would be candidates. Strain and Bovey (2008) indicate that all children partic-ipating in efficacy studies have met the diagnostic criteria for “early childhood autism” on the DSM-III and DSM-III-R. However,

met the diagnostic criteria for “early childhood autism” on the DSM-III and DSM-III-R. However, it is likely that chil-dren with other diagnoses characterized by defi-cits in social communication would benefit from this intervention. Specific diagnoses might include childhood disintegrative disorder (CDD), Asperger’s disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). Participants should be approximately 3–5 years of age, as the intervention is provided within a

Participants should be approximately 3–5 years of age, as the intervention is provided within a preschool setting. Children participating in the LEAP program may have a range of verbal language ability. The program supports the development of verbal lan-guage through a variety of naturalistic approaches including incidental teaching and time delay (Strain and Bovey 2008). Additionally, the picture exchange communication system (PECS), along with other low-tech and high-tech augmentative and

exchange communication system (PECS), along with other low-tech and high-tech augmentative and alternative communication systems, has been successfully incorporated into LEAP classrooms, providing communication modalities for children who have little to no verbal language (Strain and Bovey).

### Treatment Procedures  LEAP classrooms typically operate 5 days a week for 3 h a day. Each classroom includes 3–4 chil-dren with ASD, 8–10 typically developing peers, and at least three adults, who may include an early education teacher, early childhood special educa-tion teacher, speech-language pathologist, occu-pational therapist, and classroom assistant (Strain and Bovey 2008). The program features full-time inclusion, so children with ASD participate in all the same classroom

program features full-time inclusion, so children with ASD participate in all the same classroom activities alongside their typ-ically developing peers. Every classroom utilizes a general preschool curriculum, along with a social skills curriculum. Although there is varia-tion among sites, most LEAP classrooms utilize the Creative Curriculum for Preschool (Dodge et al. 2002) and/or the Storybook Journey: Path-ways to Literacy Through Story and Play (McCord 1995) to guide the general curriculum

Journey: Path-ways to Literacy Through Story and Play (McCord 1995) to guide the general curriculum (Strain and Bovey 2008). The LEAP social skills curriculum consists of five social skills: getting a friend’s attention, shar-ing, requesting sharing, play organizing (“Let’s ____” statements), and giving compliments (Strain and Bovey 2008). These skills were

subsequently lead to behavioral abnormalities. However, this study only examined four brains from people with autism and therefore more studies are needed. There is little evidence that suggests the posterior cingulate to be pathological in individuals with autism. Oblak et al. (2011) have reported that there are changes in the distribution of neurons. This suggests that there is a defect during prenatal brain development in which neurons do not migrate to the correct location in the cortex.

prenatal brain development in which neurons do not migrate to the correct location in the cortex. This study also found abnormalities in the GABAergic system as well. There is some evidence that the anterior cingulate is not functioning properly autism. One study found that the anterior cingulate is activated more in adults with autism relative to typical adults while performing a task that required sustained attention for a monetary reward (Schmitz et al. 2008). The more socially impaired the

sustained attention for a monetary reward (Schmitz et al. 2008). The more socially impaired the person is, the more activated the anterior cingulate becomes during this task. The anterior cingulate is thought to be involved in cognitive aspects of error detection and risk assessment during reward tasks. This increased activation in autistic adults can either be caused by their need to compensate for other impairments or that the monetary reward is a greater incentive. Individuals with high

for other impairments or that the monetary reward is a greater incentive. Individuals with high functioning autism also do not activate the cingulate cortex as much as typical individuals do while looking at familiar faces; this suggests that they have a lower emotional response to people they know personally (Pierce and Redcay 2008). People with autism also do not show normal activation in the “default network” during rest; this lack of activation indicates a lack of introspective and

in the “default network” during rest; this lack of activation indicates a lack of introspective and self-reflective thinking (Kennedy and Courchesne 2008).

### Linguistic Idiosyncrasies and Neologisms Patricia Prelock Communication Sciences and Disorders, Dean’s Office, College of Nursing and Health Sciences, Burlington, VT, USA

**Definition** Autistic language often contains unique features and characteristics including linguistic idiosyncrasies and neologisms. Linguistic idiosyncrasies can be defined as the atypical use of a standard word or phrase to express a specific meaning. While the word used is part of the speaker’s native language, it is not typically associated with the word or phrase of reference. Neologisms can be described as words that have been created by a speaker and are not considered to be part of

can be described as words that have been created by a speaker and are not considered to be part of the lexicon of a given language. Although, words have been created or coined using old words to create new words. For example, the word “webinar” was originated from “seminar” but one that occurs on the web or the internet. Many children with autism use neologisms or made-up words to refer to specific objects, people, or situations within their environment. For example, a child with autism might

objects, people, or situations within their environment. For example, a child with autism might call a black and blue mark or bruise, a “blusier.”

As newly coined lexical units, neologisms do create problems for understanding. In fact, in the technical world of computers, translators are often needed to make sense of these new literary units (Moghadam and Sedighi 2012). Interestingly, there are several ways to create neologisms (see Delabastita 2004, as cited in Moghadam and Sedighi 2012, p.1) including:

*   Borrowing: integral borrowings (e.g., hobby [English !Dutch, French, etc.]), loans showing graphological or phonological adaptation (e.g., hobby [German]), and structural loans (also known as calques, e.g., sky-scraper).
*   Shifting: existing words undergo semantic shifts (e.g., bug [concealed microphone]) or grammatical shifts (e.g., foreground, sideline [noun !verb]).

*   Combining: new formations through derivation (e.g., Thatcherite) and/or compounding (e.g., bubble-headed), or else new collocations (e.g., lateral thinking).
*   Coining: words are created out of the blue (e.g., Joyce’s quark). *   Imitating: words are formed by onomatopoeic imitation of noises or sounds (e.g., zoom).
*   Blending: words are formed from the parts of two others (e.g., channel + tunnel !chunnel).

*   Shortening: clippings (e.g., science-fiction !sci-fi) acronyms (e.g., AIDS).  Neologisms and idiosyncratic use of language is often seen in psychiatry in individuals with schizophrenia or thought disorders. In these cases, the language is typically difficult to understand or make sense of the context. For children with autism, it appears they often have a unique way of expressing their wants, needs, and observations, particularly as they frequently cannot find the “typical words” to express

needs, and observations, particularly as they frequently cannot find the “typical words” to express themselves. Some examples of idiosyncratic language use might be helpful in understanding a child’s approach to create meaning with the words to which he or she has access. For example, families have reported the following:

*   Instead of asking for a cracker, a child with ASD might say “I want a snack, NOT from the refrigerator and NOT wet. Crunchy from the big cupboard.”
*   A 6 year old with ASD said “Mommy, can we go again on big snowy mountain rollercoaster with scary monkey?” instead of asking the name of the roller coaster and then saying “Can we go on Expedition Everest again?”

*   A child with ASD might describe things instead of using the correct name. For example, “Fritos are crunch crackers in orange bag that fold to make a letter C.”
*   A child with ASD responded in the following way when his brother hit him on the arm: “Mommy, Ryan make my skeleton hurt” while holding his arm and crying rather than say “Mommy, Ryan hurt my arm.”
*   An 8 year old with ASD said “Fix Florida” when he pointed to a scab on his knee in the shape of the state of Florida.

*   A 7 year old with ASD asked his mom: “See Dr. Mike” when he had a headache and did not feel well.

Often for children with ASD, with familiarity and context knowledge, family members and care providers can determine the meaning being created by the idiosyncratic use of language or the creation of neologisms. Research in this area of autism is limited but provides an opportunity to examine what approaches (e.g., coining, blending, imitating, etc.) children are typically using to create new words and what profiles of linguistic and cognitive functioning are typical for children with significant

and what profiles of linguistic and cognitive functioning are typical for children with significant idiosyncratic language use.

### Linguistics of Verbal English (LOVE)  ### Linotril  ### Listening Comprehension Aparna Nadig School of Communication Sciences and Disorders, McGill University, Montreal, QC, Canada

**Synonyms** Comprehension; Receptive language; Spoken language comprehension  **Definition** Listening comprehension encompasses the multiple processes involved in understanding and making sense of spoken language. These include recognizing speech sounds, understanding the meaning of individual words, and/or understanding the syntax of sentences in which they are presented. Listening comprehension can also involve the prosody with which utterances are spoken (which can, e.g., change intended

can also involve the prosody with which utterances are spoken (which can, e.g., change intended meaning from a statement to a question), and making relevant inferences based on context, real-world knowledge, and speaker-specific attributes (e.g., to what information the speaker has access and about what he/she is likely to be talking). For longer stretches of language or discourse, listening comprehension also involves significant memory demands to keep track of causal relationships expressed

also involves significant memory demands to keep track of causal relationships expressed within the discourse. It is often viewed as an active process with three main components: attending to the perceptual input (speech), constructing meaning from stretches of speech, and relating what was heard to existing knowledge.

In typical development and developmental disorders other than autism spectrum disorder (ASD), comprehension precedes or is stronger than production, especially early in development. In individuals with ASD, delays in and difficulty with comprehension are common, and the gap between comprehension and production is reduced, though children with ASD still comprehend more words than they produce.
 The understanding of written language, or reading comprehension, is assessed separately.

### Literacy Maura Moyle and Claire Plowgian Speech Pathology and Audiology, Marquette University, Milwaukee, WI, USA  **Synonyms** Reading; Writing  **Definition** Literacy refers to the ability to read and write and to use these skills functionally in social, academic, and vocational contexts. Individuals with proficient literacy skills are able to comprehend text and effectively express ideas through written language. While the decoding skills of individuals with ASD are often within normal

through written language. While the decoding skills of individuals with ASD are often within normal limits, they frequently exhibit poor reading comprehension, particularly with narratives and other complex texts. In addition, they may have difficulty with written expression. The ability to read and write effectively can be an important asset for individuals with ASD. Strategies such as providing scripts for activities of daily living (e.g., asking for help at the grocery store) and encouraging

scripts for activities of daily living (e.g., asking for help at the grocery store) and encouraging the use of written communication (e.g., e-mails) can help enhance their communicative functioning.

### Lithium Jeffrey Glennon Department of Cognitive Neuroscience, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

**Synonyms** Lithium carbonate; Lithium citrate  **Indications** Mania, depression, aggression, mood disturbances.  **Mechanisms of Action** Lithium is an alkali metal and is among the oldest employed psychoactive therapeutic agents. Despite this, its precise mechanism of action remains unclear. These have been as varied as reported modulatory effects on neurotrophic factors, biogenic amines/enzymes, adrenergic function, postsynaptic receptor and supersensitivity, and second messenger systems

adrenergic function, postsynaptic receptor and supersensitivity, and second messenger systems including adenylate cyclase, inositol triphosphate, and protein kinase signaling cascades (Alessi et al. 1994). There is, however, a consensus that much of lithium’s action is via replacement of sodium ion functionality within the body, particularly in its indirect inhibition of neuronal processes. Inhibition of both adenylate cyclase and protein kinase C has been implicated in anti-manic effects

Inhibition of both adenylate cyclase and protein kinase C has been implicated in anti-manic effects associated with lithium. In terms of its action on biogenic amines, lithium is associated with a stimulatory effect on dopaminergic, noradrenergic, and serotonergic transmission. Recent studies have suggested actions on neurotrophic and neuroprotective mechanisms by changing the ratio of neurotrophic (Bcl-2 and BDNF) to apoptotic (BAX and p-53) factors and inhibition of GSK-3B and of

neurotrophic (Bcl-2 and BDNF) to apoptotic (BAX and p-53) factors and inhibition of GSK-3B and of N-methyl-d-aspartate receptor–mediated Ca2+ influx. Lithium is also associated with an increase in the white blood cell and platelet count, an effect mediated by its stimulation of granulocyte-macrophage colony-stimulating factor as well as increasing N-acetyl-aspartate, a marker of neuronal integrity and gray matter volume. Taken together, it has been suggested that lithium may have protective

and gray matter volume. Taken together, it has been suggested that lithium may have protective actions which affect corticolimbic circuitry thought to be involved in affective, behavioral, and emotional regulation. As such, it has been proposed that its action on this circuitry may be involved in its utility in autism.

**Specific Compounds and Properties** Lithium is available in a number of salt forms, of which the two most routinely prescribed are lithium carbonate and lithium citrate. Lithium carbonate is generally available in 400 mg tablet formulations, each of which contains 10.8 mmol lithium. Lithium citrate is available in both liquid and tablet formulations (564 mg tablets). Each of the 564 mg tablets contains 6 mmol lithium. The liquid formulation of lithium citrate is available in two strengths

contains 6 mmol lithium. The liquid formulation of lithium citrate is available in two strengths (5.4 mmol/5 mL (equivalent to approx. 200 mg of lithium carbonate) and 10.8 mmol/5 mL (equivalent to approximately 500 mg of lithium carbonate)) for twice daily administration. While the pharmacokinetics of the two most commonly prescribed formulations of lithium are similar, there are important differences in their bioequivalence. It is extremely important that the patient receives the same

differences in their bioequivalence. It is extremely important that the patient receives the same formulation each time upon a new prescription as confusion in this area could result in suboptimal or even toxic dosing. The absorption of lithium from the GI tract after oral administration is usually good with maximal blood serum levels usually being achieved in 1–4 h. In terms of its metabolism, this is relatively minor with the primary substance being left unchanged such that 95% of the oral

this is relatively minor with the primary substance being left unchanged such that 95% of the oral lithium taken is excreted by the renal system. This usually results in typical half-lives of approximately 24 h. Impairment of the kidneys or renal disease will usually impair lithium excretion with the result that the half-life is increased, requiring careful monitoring and reduction of the dosage prescribed. Since lithium acts to replace sodium ion functionality, any change to serum sodium

prescribed. Since lithium acts to replace sodium ion functionality, any change to serum sodium levels can have a major impact on lithium concentrations and their clinical effect. The absorption and excretion of lithium is closely regulated by changes in sodium. For example, excessive sweating, dehydration, or diarrhea will lead to sodium depletion and, as a consequence, plasma lithium levels will be elevated. Equally, dietary changes in salt consumption should be monitored as these can also

be elevated. Equally, dietary changes in salt consumption should be monitored as these can also influence effective lithium serum concentrations.

**Clinical Use (Including Side Effects)** Lithium is most commonly utilized as a mood stabilizing agent, particularly in the treatment of manic depression. In the context of autism, it is often used as an antiaggressive agent and for its mood stabilization properties. Other mood stabilizers are also in clinical use in autism such as carbamazepine, which is also employed in the treatment of comorbid seizures. Lithium has key prophylactic actions against both manic and depressive symptoms but is

seizures. Lithium has key prophylactic actions against both manic and depressive symptoms but is more successful in the management of acute mania compared to acute depression. While initial studies in the 1960s and 1970s demonstrated high clinical response rates in clinical trials, the clinical practice of lithium use has been inhibited by the increasing recognition that its effectiveness as a mood stabilizer in clinical practice is mixed coupled to an increased awareness of its side effect

mood stabilizer in clinical practice is mixed coupled to an increased awareness of its side effect profile. In terms of its use in autism, it is occasionally utilized against aggression and irritability with mixed success.

The utility of lithium as an effective medication in autism is debatable. While some case reports have demonstrated efficacy against aggression measures; full-scale clinical trials have shown mixed results with lithium use. In spite of this, one study in prepubertal children with severe aggression in conduct disorder showed positive effects (Campbell et al. 1995) and its use in autism is typically as an antiaggressive agent. Furthermore, it has been suggested that the combination of lithium

as an antiaggressive agent. Furthermore, it has been suggested that the combination of lithium with other pharmacotherapy may offer improvement versus lithium alone. For example, positive results have been reported for the combination of lithium and fluvoxamine against mood disturbances and aggression. One disadvantage of using lithium is that the therapeutic effect is gradual, often taking 1–3 weeks to achieve efficacy and is dependent on patient compliance (since drug administration is orally).

to achieve efficacy and is dependent on patient compliance (since drug administration is orally). Coupled to this, other agents (such as antipsychotics) can be administered in other ways (e.g., intramuscularly) to noncompliant patients and are often associated with more rapid effects on aggression inducing rapid sedation.

In spite of these mixed studies of lithium’s efficacy against aggression, it remains a strong candidate where mood disturbances are indicated, but the narrow range of dosing available for titration with lithium in children, adolescents, and adults with autism is of concern. Toxic side effects, notably nephrotoxicity and cardiotoxicity in chronic lithium users, are serious adverse risk events mitigating against the widespread clinical utility of lithium in autism. As a result of such serious

against the widespread clinical utility of lithium in autism. As a result of such serious adverse events, medication with lithium should be carefully controlled with frequent blood tests necessary for the evaluation of its safety. In other clinical populations, lithium may be of use in treating comorbid aggression (Lettinga et al. 2011), but its treatment in autistic populations may be better performed by atypical antipsychotic agents such as risperidone. Prior to commencement with lithium

performed by atypical antipsychotic agents such as risperidone. Prior to commencement with lithium therapy, laboratory screening should be performed to assess renal and thyroid function in addition to a complete blood count and ECG. The excretion of lithium is via the kidneys, thus impairment of renal function could alter plasma drug concentrations and dosing required. In terms of thyroid function, lithium is associated with a decrease in free tri-iodothyronine and thyroxine which are normally

lithium is associated with a decrease in free tri-iodothyronine and thyroxine which are normally compensated for in euthyroid patients by elevating thyroid-releasing hormone levels. Patients with impaired thyroid function lose this compensatory mechanism. While lithium does not often induce cardiac complications, it does increase cardiac conductance and is associated with elevated white blood cell and platelet counts. Furthermore, lithium is often associated with cardiac repolarization (ST

cell and platelet counts. Furthermore, lithium is often associated with cardiac repolarization (ST segment and T-wave) and in one fifth of patients with T-wave flattening. All of these changes should be carefully monitored at half-yearly intervals while lithium is prescribed. In the case of family-planning issues, lithium is often associated with birth defects in pregnant women, and thus its use during pregnancy should be avoided with contraception advised to women of child-bearing age who are

during pregnancy should be avoided with contraception advised to women of child-bearing age who are taking lithium.

Therapeutic blood concentrations are reported to lie between 0.5 and 1.2 mmol/L with associated side effects being more marked at higher concentrations. Ideally, lithium levels should be measured every 12 h since the last administered dose concurrent with clinical observation. Therapeutic blood serum levels of lithium are often between 0.5 and 1.2 mEq/L (0.5–1.2 mmol/L) with associated side effects being more marked at higher concentrations. Administration is generally well tolerated, taking

being more marked at higher concentrations. Administration is generally well tolerated, taking 1–2 weeks to achieve a clinical response. Initial doses are usually between 300 and 600 mg orally with elevation by the same amounts in 4–5-day intervals to therapeutic doses of 900–1500 mg daily divided across two doses. In children under 12 years of age, doses are typically 10–30 mg/kg per day resulting in a daily 900 mg dose in a 30 kg child divided across two to three doses. A 450 mg

day resulting in a daily 900 mg dose in a 30 kg child divided across two to three doses. A 450 mg sustained-release capsule is also available. Dosing resulting in serum levels over 1.5 mEq/L is often toxic. It is advisable to take medication orally after food in order to minimize gastrointestinal (GI) side effects. Ideally, lithium levels should be measured every 12 h since the last administered dose concurrent with clinical observation.

Typically, side effects are moderate but more serious issues can also arise. Children, adolescents, and adults generally tolerate lithium intake well with side effects typically including a dry mouth, metallic taste, nausea, vomiting, diarrhea, headache, tremor, and weight gain. In terms of more serious side effects, ataxia, dysarthria, polyuria, polydipsia, tremor, weakness, and mild, short-term cognitive impairment and confusion can occur. Polydipsia in particular is a side-effect feature

cognitive impairment and confusion can occur. Polydipsia in particular is a side-effect feature seen in twice daily lithium dosing. Lithium-induced tremors tend to be irregular in rhythm and amplitude, often affecting the fingers. These movements of the finger flexion and extension often have a jerky character. The adrenergic beta-blockers such as propranolol, metaprolol, and nadolol can be useful therapeutics in the management of lithium-induced tremors. Some skin conditions such as acne or

therapeutics in the management of lithium-induced tremors. Some skin conditions such as acne or psoriasis can be exacerbated by lithium usage. Lithium has a low therapeutic index and so regular blood serum monitoring is warranted. Some side effects (notably polyuria) tend to become more frequent when blood serum lithium levels are above 1 mmol/L. In patients taking lithium chronically, monitoring for potential hypothyroidism should be considered which can be remediated by thyroxine replacement

for potential hypothyroidism should be considered which can be remediated by thyroxine replacement therapy. Hypothyroidism as a side effect of lithium is quite common with middle-aged women particular suffering from this side effect (up to 20% of users in this age group). Thyroid function usually returns to normal after discontinuation of lithium use. Lithium treatment can also increase the risk of hyperparathyroidism and as such, chronic lithium use should be accompanied by blood serum calcium

hyperparathyroidism and as such, chronic lithium use should be accompanied by blood serum calcium level monitoring.

Long-term lithium use can also be associated with nephrotoxicity and cardiotoxicity. Approximately one-fifth of patients demonstrate a decrease in the glomerular filtration rate which is often benign but can result in a very small subset of patients in interstitial nephritis. Similarly, lithium can also induce nephrogenic diabetes insipidus (hence the occurrence of polyuria and increased thirst) but this is usually reversible except in extreme long-term (>15 years) users. Above serum lithium

but this is usually reversible except in extreme long-term (>15 years) users. Above serum lithium levels of 1.5 mmol/L, mild gastrointenstinal, cardiac, and CNS toxic effects of lithium are apparent, with disorientation, seizures, coma, and death occurring at serum concentrations above 2 mmol/L of lithium. If suspected, lithium use should be discontinued and blood samples sent for analysis of serum lithium, creatinine, and electrolyte concentrations in order to guide the rate and nature of fluid

lithium, creatinine, and electrolyte concentrations in order to guide the rate and nature of fluid replacement. Treatment of lithium toxicity should employ osmotic diuresis or forced alkaline diuresis with toxic serum lithium concentrations above 3 mmol/L requiring peritoneal or hemodialysis. An ECG should also be performed if lithium toxicity is apparent as there is a risk of cardiac arrhythmia. Dependent on the individual, there can be quite a wide variation in the degree and severity of toxic

on the individual, there can be quite a wide variation in the degree and severity of toxic side effects coupled to different serum lithium levels and as such it should be managed on a case-by-case basis.

### Lithium Carbonate  ### Lithium Citrate  ### Litigation, Parent-Initiated John W. Thomas Independent Educational Consultant, Durham, NC, USA Quinnipiac University School of Law, Hamden, CT, USA  Parent-initiated lawsuits alleging that school districts have failed to provide appropriate services for their children with ASD are governed by the Individuals with Disabilities Education Act (IDEA). IDEA establishes a parent right to sue, specifies the applicable procedural steps, and allows for

IDEA establishes a parent right to sue, specifies the applicable procedural steps, and allows for parents to bring suit on their own without the assistance of an attorney.

**The Right of Parents to Initiate Litigation** Section 1415(i)(2)(A) of IDEA provides that “any party aggrieved by the findings and decision” of a school district “shall have the right to bring a civil action.” An aggrieved party may file a civil lawsuit in either state or federal court. In its 2007 decision in Winkelman v. Parma City School District, the United States Supreme Court recognized that parents who object to a school district’s educational plan under IDEA are “parties aggrieved.”

that parents who object to a school district’s educational plan under IDEA are “parties aggrieved.” Thus, the parents may file suit against school districts. In Winkelman v. Parma City School District, the United States Supreme Court also implicitly recognized three grounds for parental lawsuits under IDEA. Parents may challenge the substantive sufficiency of the Free Appropriate Public Education (FAPE) that the school district provides, may challenge the adequacy of the procedure accorded the

(FAPE) that the school district provides, may challenge the adequacy of the procedure accorded the parents, and the parents may sue for private school expenditures necessary to provide a child with an appropriate education.

**The Procedural Steps** The regulations that accompany IDEA provide that each state must establish a State Educational Agency (SEA) to address complaints filed by parents and other aggrieved parties. In addition, the SEA must promulgate written procedures for resolving complaints. Unless state law specifies otherwise, aggrieved parties must file complaints with the SEA “within two years of the date the parent or agency knew or should have known about the alleged action that forms the basis of .

the parent or agency knew or should have known about the alleged action that forms the basis of . . . complaint.” The complaint “must remain confidential.”

The school district must respond to the parent’s complaint within 10 days of receiving it. The response must include “[a]n explanation of why the agency proposed or refused to take the action raised in the . . . complaint,” describe the procedures it used to reach its decision, and articulate other options that it considered and rejected. Within 15 days of receiving notice of the complaint, the district must convene a meeting with the parent and members of the Individualized Education Program

district must convene a meeting with the parent and members of the Individualized Education Program (IEP) Team that took the action about which the parent has complained. If the district fails to resolve the complaint to the parent’s satisfaction within 30 days, the SEA may hold a due process hearing to assess the complaint’s validity. If the parent fails to participate in the hearing, the SEA hearing officer may dismiss the complaint.

Unless state law specifies otherwise, parents have 90 days following the hearing officer’s decision in the due process hearing to file a civil lawsuit. The IDEA regulations also provide that states allow the parents and school district to resolve disputes through a mediation process. Participation in mediation is voluntary and the utilization of mediation alters the dispute resolution timeline by allowing time for the parties to reach a resolution through mediation. Finally, the regulations that

time for the parties to reach a resolution through mediation. Finally, the regulations that accompany IDEA provide that states must develop and make available model complaint forms. The state may not, however, require that parents or other aggrieved parties use the model forms.

**Right to Proceed Without an Attorney** In Winkelman v. Parma City School District, the United States Supreme Court held that parents can prosecute an IDEA civil suit pro se, without utilizing the services of an attorney.
 ### Little Brain  ### Little’s Disease  ### Living Arrangements in Adulthood Andrew Iskandar1 and Lee Marcus2 1Division TEACCH, CB 7180, UNC-CH, TEACCH Early Intervention Program, Chapel Hill, NC, USA

2TEACCH Autism Program, University of North Carolina, Chapel Hill, NC, USA  **Definition** Adult residential models offer individuals with autism a range of services that support different levels of independence, input, and community integration. This article reviews independent living, supported living, group home, and ICF-MR models of residence and the variations and issues surrounding these programs.

**Historical Background** The history of adult residential programs follows the progression from overcrowded large-scale institutions that function on a custodial care model to a continuum of services designed to support independence and foster community integration for all individuals on the autism spectrum. The deinstitutionalization movement emerged as the world became more aware and accepting of individuals with disabilities, causing a social shift toward inclusion and better treatment.

of individuals with disabilities, causing a social shift toward inclusion and better treatment. The growth in social consciousness was matched by the government passing legislation that increased patients’ rights, subsidized the creation of new programs, and reduced the financial burden on individuals, allowing them greater choice in treatment. At the turn of the century, the social and political approach to individuals with disabilities was segregation. There were two options for individuals

approach to individuals with disabilities was segregation. There were two options for individuals with disabilities: live with their family with no services or move into a government institution (Gerhardt 2009). Since their creation in the late nineteenth century, institutions were overcrowded. By 1940, a third of American institutions had between 2,000 and 5,000 residents each (the maximum holding 9,177) (Braddock and Parish 2001). The patients had few rights and no public voice. As the

holding 9,177) (Braddock and Parish 2001). The patients had few rights and no public voice. As the overcrowding problem increased, the courts gave more control to the institutions, resulting in increased sterilization, lobotomy, shock treatment, and euthanasia. Institutions functioned on a custodial care model, providing the most basic necessities for life but offering little treatment and no freedom.

Beginning in the 1950s, the parents of disabled children began to organize and advocate for the development of services and programs that could keep their children out of institutions. Private schools and day programs were developed focusing on the needs of children diagnosed with intellectual disabilities, many of which would not accept children with an autism diagnosis (Gerhardt 2009). Autism at this time was still struggling for recognition. It was frequently misdiagnosed as childhood

at this time was still struggling for recognition. It was frequently misdiagnosed as childhood schizophrenia, intellectual disabilities, or various psychiatric disorders. Programs designed for children with ID did not meet many of the social and communication needs of children with autism (Van Bourgondien and Elgar 1990).

With the election of John F. Kennedy, mental health and the country’s treatment of disabilities was brought to the forefront of national consciousness. The President’s Panel on Mental Retardation produced 95 recommendations to reduce the need for institutions through community services and greater integration into society. It also required all 50 states to develop plans to create preventative services and improved residential options. JFK transitioned the national attitude away from

services and improved residential options. JFK transitioned the national attitude away from segregation toward giving citizens with mental illness a place in American society (Braddock and Parish 2001). The 1963 Mental Retardation Facilities and Community Health Centers Construction Act sparked the creation of both public and private nonprofit community health centers.

President Kennedy commenced the migration out of institutions into smaller community-based homes. In the 1969 President’s Committee on Mental Retardation, Dr. Bengt Nirje described this as the normalization movement. The driving principle of the movement was to give the mentally disabled a life that is as close to the norm as possible (Mesibov 1976). This was implemented by creating community-based programs and developing new models of residential services that focused on the humanization of

programs and developing new models of residential services that focused on the humanization of the residents. The early 1970s brought a series of landmark developments in public policy and law that enhanced the lives of individuals with intellectual disabilities and drove society further away from institutions. Wyatt vs. Stickney gave the right to treatment to all individuals experiencing mental illness (Mesibov 1976). Institutions could no longer simply maintain a custodial care mentality;

illness (Mesibov 1976). Institutions could no longer simply maintain a custodial care mentality; they were required to provide treatment to all of their residents. During this time, Medicaid was founded as part of the Social Securities Act, which gave federal monies to facilities that met ICF/MR standards. This meant that states would be refunded 50–78% of the costs of institutions if they could meet a series of requirements, including providing a certain amount of space per resident, causing a

a series of requirements, including providing a certain amount of space per resident, causing a steady decline in the number of residents per institution. In 1967, there were 194,000 people in institutions; by1998, it had been reduced to 52,801 (Braddock and Parish 2001). The guidelines required institutions to become more homelike, but they still maintained a medical model with residents required to utilize in-house doctors and treatment plans (Sullivan 2007).

The further erosion of institutions came in 1981 with the Omnibus Budget Reconciliation Act. Wolf Wolfensberger had shifted the focus of the normalization movement from the individual to the organizations that shaped their lives (Mesibov 1976). He made it clear that a typical life could never be achieved in an institution and home-oriented alternatives needed to be created. This act empowered Medicaid to reimburse home and community-based services, including case management and new models of

to reimburse home and community-based services, including case management and new models of residential programs (Laudicina and Burwell 1988). This opened the door to group homes, independent living, and supervised living programs, as well as day programs and vocational support. Programs were now able to offer a range of services, addressing the needs of all individuals on the autism spectrum.

**Current Knowledge** In 1982, a survey of 93 adults with autism found that 16% lived in residential programs; that number rose to 53% by 1991 (Howlin 2000). This trend reveals a rising demand for residential services that shows no signs of slowing down. The developmental disabilities community has responded to this need by creating a continuum of residential models designed to address the varied needs of all individuals on the autism spectrum. These programs range from optional services

varied needs of all individuals on the autism spectrum. These programs range from optional services designed to provide unobtrusive support allowing individuals to live a typical life to residences with 24-h staff and a team of professionals implementing individualized treatment plans to address severe behaviors and medical problems. Each model recognizes autistic individuals’ desire to be a part of the community, have control of their environment, and maintain the full extent of independence

of the community, have control of their environment, and maintain the full extent of independence that they are able to achieve. From the programs that require the highest independence level to the lowest, this chapter will review independent living, supported living, group homes, and ICF-MR facilities.

**Independent Living** Even high-functioning adults can have trouble living independently. In a literature review by Howlin and Goode, they found that out of 66 adults, only 11 lived without any supportive services (Volkmar 2005), and the British National Autistic Society noted that only 3% live without any professional support. Independent living programs are designed to provide their clients with the support to live independently in their own residence. They believe that all people can

with the support to live independently in their own residence. They believe that all people can benefit from support no matter what their level of functioning. The average client is independent enough to lead a typical life but invests in services to improve their lifestyle and provide support when necessary. To be in the program, they must be able to determine their own needs and goals. All of the services provided are directed by the consumer and designed to fit individual needs. Many programs

services provided are directed by the consumer and designed to fit individual needs. Many programs begin by helping their clients find a residence that fits their economic restrictions and select appropriate roommates if desired. Once in their own home, they are offered classes in self-care, creating a nutritional diet, home care, budgeting, and how to navigate social and work environments. They offer different levels of involvement in their clients’ lives, from visiting offices and meeting with

different levels of involvement in their clients’ lives, from visiting offices and meeting with family to private instruction. A primary goal of these programs is to build a community network of those in similar situations. They have community events to encourage social interaction and involvement.

Income, independence, and social ability are major obstacles preventing individuals from enrolling in this type of program (Leblanc et al. 2008). Acquiring and holding a high-paying job in order to afford your own residence and support services is especially difficult for adults with ASD. They must have basic household and self-care skills to maintain a residence and a healthy lifestyle. The services encourage them to take certain classes, but the client needs the self-awareness to choose the

encourage them to take certain classes, but the client needs the self-awareness to choose the curricula that is most beneficial to them. The client also requires a certain level of social interaction in order to obtain a house or an apartment, enroll in services, and be part of a neighborhood.

The British National Autistic Society utilizes the independent living program model in several areas throughout the United Kingdom. They provide individualized levels of service, ranging from 1 h a week to daily meetings. At the high-functioning end of their service, they help individuals develop nutritious diets and budgets their income. A major goal is to take part in community events and social activities, such as horseback riding, bowling, or attending the cinema. The independent living

activities, such as horseback riding, bowling, or attending the cinema. The independent living model is emulated in colleges around the country. Students with autism attending school meet with advisers twice a week to discuss roommate relations, academic strategies, time management, home and self-care, and the social aspects of college life. These programs focus on the unique challenges autistic students face in the academic and social aspects of university life.

The Achieving in Higher Education with Autism/Developmental Disabilities (AHEADD) program was developed by Carnegie Mellon and now offers its services to schools across the USA. The program is designed to facilitate independent living along with academic support for college students. Its services help their clients develop advocacy skills for their own academic success by educating them on how to manage classes, professors, and workload. They are taught how to live independently, navigate

to manage classes, professors, and workload. They are taught how to live independently, navigate campus, and utilize all of the services available to them as a student with a disability. Along with academic support, they are paired with a peer who meets with them socially once a week and mentors them on the social aspects of college life. They also provide a series of social events, such as picnics, parties, athletic groups, and bowling, to create a community within the program.

**Supported Living** Many adults with ASD prefer to live at home or in their own residence but require increased involvement and supervision from professionals. Supported living is designed to allow individuals who are not a danger to themselves and are able to make responsible health and life choices but do not have the ability to navigate life without sig- nificant support. These programs allow individuals the freedom to choose where they want to live and have input into their daily

allow individuals the freedom to choose where they want to live and have input into their daily schedules. They target autistic adults who face communication, social, or sensory/motor challenges and are not ready for the vast amount of choices required in an independent living program but would be too limited in a group home setting.

Clients of supported living programs are visited each day by direct-care workers, who provide them with individualized support. This can range from providing daily schedules and vocational support to aid and instruction in self- and home care. Programs include 24-h crisis care and overnight support when needed. The benefit of this level of residential program is that it provides individuals with the support to avoid inpatient care. They are now able to determine where they live and work and

the support to avoid inpatient care. They are now able to determine where they live and work and have the freedom to engage in the community whenever they would like.

An excellent example of supported living is the California-based Jay Nolan Community Services. Jay Nolan was originally established in 1975 as a series of group homes serving the autistic community in Los Angeles. In 1992, they found the group home model to be too limiting and decided to shift their focus toward greater community integration. They dissolved their group homes and built a supported living program to replace them. They believe that individuals with developmental disabilities can

living program to replace them. They believe that individuals with developmental disabilities can maintain a full life within the community if they are provided with the right support and assistance.

Their organization provides two main services that are matched together: personalized day support/supported employment and supported living. The personalized day program views involvement with an organization, whether through employment or volunteering, as a critical part of integrating with the community and crucial to reaching independence. Clients are individually matched with an organization that they are involved with each day. If their disability makes a full day of work too difficult,

that they are involved with each day. If their disability makes a full day of work too difficult, the rest of their day is filled with meaningful community-oriented activities. The supported living program provides assistance and support to fulfill their residential needs. Each client builds a “circle of support” that includes representatives from Jay Nolan, family, friends, health-care professionals, and the client themselves. The circle of support determines which services the individual will

and the client themselves. The circle of support determines which services the individual will receive and the direction of their curriculum and their goals for the coming year.

**Group Homes** Group homes exist for individuals that require 24-h direct-care supervision because of physical disabilities or behavior problems that cannot be adequately handled by the family. Each group home is owned and run by an organization that makes all of the staffing selections and residential decisions. The staff provide constant care, supervision, and guidance with everyday decisions. Most have a nurse on staff, immediate response crisis care, and staff trained to handle emergency

Most have a nurse on staff, immediate response crisis care, and staff trained to handle emergency situations and behavior problems.

Since the deinstitutionalization movement, group homes have been striving to separate themselves from the asylum image that they evoke in many people. The new model for group homes is to be as much like a family home as possible. They reach for a homelike aesthetic with lighting, house design, furniture, and personalized bedrooms. The residents participate in maintaining the household to the best of their ability through chores and cooking. The number of residents per house has fallen from an

of their ability through chores and cooking. The number of residents per house has fallen from an average of 20 to between 2 and 10 individuals, and many are residences built for families rather than for institutions (Sullivan 2007).

Group homes have moved on from the “custodial care” model of the past to focus more on the resident’s participation in the home, community integration, and self-determination. The organization that runs the group home still decides daily activities, when to visit the community, and the curriculum goals for each individual, but they have built in a system for input from the resident and their families. The curriculum is designed to develop self-care skills and social activities within the

families. The curriculum is designed to develop self-care skills and social activities within the household. There are scheduled community outings, and residents are matched with daily work programs. The major criticism of group homes is that residents and their family have little input into decisions (Gerhardt 2009). The amount of say each resident has in curriculum and programming depends on the group home they are in and the level of their disability. Residents do not have input into large

group home they are in and the level of their disability. Residents do not have input into large decisions, such as staffing, housemate selection, or house and grounds expansion and construction. The company that owns the home must balance its resident’s needs with their own financial goals and the needs of the greater disabled community.

Group homes also suffer from exceptionally high staff turnover. There is an average 50% yearly resignation rate with an average of 10–11% of positions left open per home (Gerhardt and Lainer 2010). Working in a group home is both physically and emotionally taxing, requiring the staff to build positive relationships with the residents, handle severe behavior problems, and understand the underlying disability with little financial recompense or training. Direct-care staff are not required to have

disability with little financial recompense or training. Direct-care staff are not required to have a degree, special training, or any experience in the field. Staff with degrees quickly move on to higher-paying jobs. Due to the turnover, most homes do not have their target number of staff, which increases the client-to-staff ratio and the workload of each staff. In most cases, new staff are needed to immediately fill the turnover gap resulting in only basic training, leaving a gap in their

needed to immediately fill the turnover gap resulting in only basic training, leaving a gap in their understanding of the disability (Van Bourgondien and Schopler 1990). Despite their responsibilities, direct-care workers are given low pay, inadequate benefits, and little professional status leading to no direct career path. Aside from increasing staff stress and workload, the turnover rate can take a toll on the residents themselves. The social and communication deficits experienced by

can take a toll on the residents themselves. The social and communication deficits experienced by individuals with autism combined with intense desire for sameness and routine can make it difficult to integrate new people into their lives. Each new staff member will teach curriculum in divergent ways or utilize different communication techniques, especially if they have only been briefly trained, which can cause loss of a resident’s cognitive and social gains.

A stable workforce creates continuity in the clients’ care and has been shown to increase the resident’s social interactions (Van Bourgondien and Schopler 1990). To combat loss of employees, organizations employ different strategies ranging from creating opportunities for advancement within the organization to having their staff live in the group home itself in a room separate from the residents. The family teaching model of group homes is designed to maximize staff stability for its

residents. The family teaching model of group homes is designed to maximize staff stability for its residents. A married or committed couple lives rent-free while providing direct-care services to two to four young adults with autism (Gerhardt 2009). They are encouraged to make the residence as much their home as possible and build a family-like rapport with the residents. The Princeton Child Development Institute’s Family Focus homes have found success in this model, designing their curricula

Institute’s Family Focus homes have found success in this model, designing their curricula to include family-style activities and using the family unit as a stepping stone to interact with the community.

**ICF-MR Facilities** ICF-MR facilities are designed to address the needs of individuals who have both autism and intellectual disabilities. The majority of residents also have major health problems or comorbid diagnoses, ranging from seizures, mental illness, visual or hearing loss, ambulatory disabilities, or behavior problems (Gerhardt 2009). These facilities follow the same design as a group home with 4–10 individuals per residence and curricula focused on self-care, communication, and

home with 4–10 individuals per residence and curricula focused on self-care, communication, and social development but are better equipped for severe behavior and health problems. They feature an on-site nurse, advanced staff training in behavior and health problems, and 24-h emergency critical care. They typically maintain a larger number of staff, reducing the client-to-staff ratio and turnover.

The focus on resident’s health care and mental illness needs places ICF-MR homes in the same category as hospitals, institutions, and treatment centers (Wall 1990). This status gives them access to federal Medicaid monies, which reduces the cost to individuals and their family and gives them a wider field of treatment options. They are subject to the same restrictions and regulations as medical facilities, requiring them to meet many of the same documentation, bureaucratic, and policy standards

requiring them to meet many of the same documentation, bureaucratic, and policy standards as hospitals and large institutions. It is a major challenge to meet these standards while maintaining a homelike, comfortable, family atmosphere.

The residents of ICF-MR facilities require a variety of medical professionals to meet their needs. The facility maintains a close relationship with the physicians and mental health care professionals in the area but gives their residents the freedom to decide who they go to for care. A key to successful treatment is that the facility builds a consensus within a resident’s medical team and constructs a coordinated and consistent plan. The facility then meets with the resident or their guardian

a coordinated and consistent plan. The facility then meets with the resident or their guardian and builds their needs and goals into the plan. If an ICF-MR facility cannot meet the medical or behavioral needs of a resident, they must enter an intensive inpatient behavior care unit. These are short-term residences, not exceeding 6 months, which provide their clients intensive therapy to deal with extreme aggressive behaviors targeted at both themselves and others (Gerhardt 2009). The individuals

aggressive behaviors targeted at both themselves and others (Gerhardt 2009). The individuals entering these programs have experienced an increase in behaviors that would result in needing to find a more restrictive living situation or in a medical state where they need to detox off medication that is managing severe behaviors. The professionals utilize behavioral interventions, cognitive therapies, skill trainings, and a process of medication assessment and trials to teach the patient to

skill trainings, and a process of medication assessment and trials to teach the patient to regulate their own behaviors and maintain their own mental health.

One of the most successful intensive inpatient behavior care units is the Kennedy Krieger Institute’s Neurobehavioral Unit. They have provided care to patients from across America and from many countries around the world. Their therapy is derived from applied behavior analysis and focus on assessments of behavior, the effects of reinforcement, and parent–child interaction. A key component to their program is training the care givers and people who work with the individual in unified techniques

program is training the care givers and people who work with the individual in unified techniques and strategies to handle behaviors and maintain their client’s stability. This process begins months before the client is released, ensuring that they enter a supportive and therapeutic environment that will maintain the gains they made within the institute.

A concern of both group homes and ICF-MR facilities is finding a place for their residents in the workforce. Employment is the foundation of persons placed in the community and provides important opportunities for social interaction and building communication. Kessissoglou and Farrell showed supported employees gained independence, self-esteem, and became more responsible through employment (Mawhood and Howlin 1999). Many programs provide their clients with a separate day program in a sheltered

and Howlin 1999). Many programs provide their clients with a separate day program in a sheltered workshop or supported employment in the community. Farmstead programs merge residential and vocational programs by providing work opportunities on campus. Farmsteads are group homes or ICF-MR facilities that are built on land that is designed to maintain agriculture and raise farm animals. The residents maintain the grounds, raise animals, grow the crops, and sell what they make alongside

residents maintain the grounds, raise animals, grow the crops, and sell what they make alongside direct-care workers who are trained in farm work. This type of work is immediately meaningful, has a visible effect on the surrounding environment, and encompasses a large spectrum of abilities. Tasks that range from harvesting crops and building retention walls to separating seeds and feeding animals provide work that meets the physical and mental needs of each resident. This model gives work

provide work that meets the physical and mental needs of each resident. This model gives work opportunities to individuals with severe disabilities or extreme behavior problems who may not be able to work safely in the community.

Division TEACCH’s Carolina Living and Learning Center (CLLC) is an ICF-MR facility that resides on 79 acres of land, has 15 residents in two houses, and provides supported employment to 2 individuals from group homes in the area. The center is an exemplary example of the effects of the TEACCH method. Individualized structure has been built into every aspect of resident’s life from work systems to social interaction. Residents transitioning into the CLLC show marked increases in communication,

social interaction. Residents transitioning into the CLLC show marked increases in communication, social skills, independence, and a reduction of behavior problems (Van Bourgondien et al. 2003).

The vocational program revolves around both residents and the direct-care workers maintaining several large vegetable gardens. By taking part in every step in the life cycle of vegetables, from planting to cultivating, and finally eating what they have grown, residents take pride in their part of the process. They also engage in a variety of nonagricultural work such as making soap and potpourri to cooking pesto and salsa. Periodically during the year, the residents sell what they have made at

to cooking pesto and salsa. Periodically during the year, the residents sell what they have made at local events. Each day after work or on weekends, they go on community outings, either to attend local events, go shopping, or for exercise. Integrated into both the vocational program and their evenings is a curriculum of communication, self-care, and household skills that are designed specifically for each individual.

The continuum of residential models focuses on the needs of the current autistic community. Adults with autism have a wide variety of options that support their independence, foster their growth, and build a place for them in the world. As the population ages, a new complication looms on the horizon: retirement. The level of medical care and the type of activities and outings in the current models are not designed to meet the needs of the elderly, and the typical retirement community does not

are not designed to meet the needs of the elderly, and the typical retirement community does not have staff trained to aid autistic individuals. Residential Services Inc. is the first organization to address this problem head on. They have built a facility that is designed to meet the needs of elderly individuals at all levels of the autism spectrum.

Residential Services Inc. is a North Carolina-based organization who developed their autism program with support from the TEACCH program. They provide the developmentally disabled community with all levels of services from residential programs to independent living support. They maintain 16 residences that are divided into group homes, ICF-MR facilities, and homes that are rented to autistic individuals as part of a supported living arrangement. Their Community Vocational and Learning Services

as part of a supported living arrangement. Their Community Vocational and Learning Services program provides supported employment to residents in need of a job and their Life Options program is an enhanced day program for individuals requiring ICF-MR level of care.

The Spring Glen Retirement Community combines their experience with all levels of the autism spectrum into care for the elderly. The facility is made up of 15 units that are designed to match each model on the residential continuum. Each unit is designed to meet the varied needs of individuals and maximize their independence. Some units are built for highly independent individuals and include a kitchen- ette and in some cases are part of a larger two-bedroom suit. Other units are designed to

kitchen- ette and in some cases are part of a larger two-bedroom suit. Other units are designed to meet the standards of an ICF-MR facility and offer increased supervision, medical care, and support. They share communal activity rooms, spaces for therapy, dining rooms, gardens, walking trails, and a pond. The communal areas are often used for large group activities to foster friendships and build an air of community.

As the number of individuals with autism seeking residential care rises, residential services continue to grow and adapt services to the needs of the autistic community. Adults with autism can choose a model that will maximize their independence, build a place in the community, and find the best path to personal growth.

**Future Directions** The United States Census Bureau estimates that there will be over 1,495,264 adults with autism in America by 2016. The majority of these individuals will require some form of residential services. In 1998, the wait list for residential placement in the USA had reached 87,000 and has only risen since (Gerhardt and Lainer 2010). The current system is not prepared to meet the needs of the autistic population today, much less the growing numbers of individuals aging out of

needs of the autistic population today, much less the growing numbers of individuals aging out of student services. In the coming years, residential services will need to not only expand the number of individuals it serves but also the types of services it provides.

For the first time in United States history, autism is high on the national agenda. The rise in the population of individuals with autism has been recognized by the news media which has caused a wave of awareness in society. President Obama has not only made autism a priority but designated his first appointee with autism to the National Council on Disability. This prompted talk of new legislation that will create and fund new residential programs across the country.

With the growing population, the options available to adults with autism must expand to meet new and different needs. If we continue only down the route of community integration and standardizing residential models, it may lead us to an ineffectual system (Schopler and Hennike 1990). There is already a trend in residential services toward innovation and experimentation, as seen in the family teaching model, farmstead programs, clustered apartments, and many others. The flexibility of the models

model, farmstead programs, clustered apartments, and many others. The flexibility of the models will include both services offering community integration and others that would not. Some modern ICF-MR facilities follow the institution model to meet the needs of individuals with severe disabilities. The Murdoch Developmental Center houses 550 individuals with autism of all ages, who suffer from extreme behavioral challenges. In the coming years, we will see an expansion of residential programs to

behavioral challenges. In the coming years, we will see an expansion of residential programs to house the rising population and meet their changing needs.

**Resource List** Achieving in Higher Education with Autism/Developmen- tal Disabilities (AHEADD). Retrieved from http:// www.aheadd.org
Carolina Living and Learning Center. Retrieved from http://teacch.com/programs-and-services/Carolina- living-learning-center
Jay Nolan Community Services. Retrieved from http:// www.jaynolan.org/ Kennedy Krieger Institutes’ Neurobehavioral Unit. Retrieved from http://www.kennedykrieger.org/kki_ cp.jsp?pid=1573

Murdoch Developmental Center. Retrieved from http:// www.murdochcenter.org/ Residential Services Incorporated. Retrieved from http:// www.rsi-nc.org/index.html
The National Autistic Society Supported Living Services. Retrieved from http://www.autism.org.uk/en-gb/our- services/residential-community-and-social-support/ supported-living.aspx
The Princeton Child Development Institute Family Focus Group Homes. Retrieved from http://www.pcdi.org/ programs/familyFocus.asp

### Local Educational Agency  ### Local Educational Authority Pamela Brucker Special Education and Reading, Southern Connecticut State University, New Haven, CT, USA

**Synonyms** Local educational agency; Nexus  **Definition** The Local Education Authority (agency) is the public entity that is responsible financially and for planning the educational program for an individual receiving special education services. The LEA is also responsible for monitoring and reporting data to state and federal agencies. Frequently, the LEA is the district in which the individual receiving services lives, but there can be other instances in which a public entity could be

receiving services lives, but there can be other instances in which a public entity could be determined to be the LEA.

### Locus Ceruleus Susan Y. Bookheimer Department of Psychiatry and Biobehavioral Sciences, UCLA School of Medicine, Los Angeles, CA, USA

**Definition** The locus ceruleus is a small brain structure located in a part of the brainstem called the Pons. This structure is the site in which an important excitatory neurotransmitter, norepinephrine, is manufactured and sent to other parts of the brain. Norepinephrine plays a role in many brain functions including homeostasis, stress, fear, mood, and sleep. The connections of the locus ceruleus are vast but include part of the amygdala, cingulate cortex, hypothalamus, medial frontal

ceruleus are vast but include part of the amygdala, cingulate cortex, hypothalamus, medial frontal cortex, cerebellum, and spinal cord. The locus ceruleus is not directly implicated in autism and there is no evidence of pathology in the structure (Martchek et al. 2006), though there have been speculations of such a link (Mehler and Purpura 2009).

### Lofexidine 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  **Definition** Lofexidine is a medication of the alpha-2 agonist class with a molecular weight of 259.13 g/mol and a chemical formula of C11H12Cl2N2O. It is a structural analog of the alpha-2 agonist clonidine. It was originally approved in Germany to treat hypertension but was withdrawn due to a lack of clinical efficacy (Gish et al. 2010). Lofexidine can be used as a

but was withdrawn due to a lack of clinical efficacy (Gish et al. 2010). Lofexidine can be used as a short-acting antihypertensive, but it is primarily used to assist with opioid detoxification. It is approved in the UK for this purpose under the trade name BritLofex. While extended-release formulations of the alpha-2 agonists clonidine and guanfacine are approved by the US Food and Drug Administration (FDA) to treat attention deficit-hyperactivity disorder (ADHD), lofexidine has not been studied

(FDA) to treat attention deficit-hyperactivity disorder (ADHD), lofexidine has not been studied for this purpose. The FDA has not currently approved lofexidine for clinical use in the United States.

Like other alpha-2 agonists, lofexidine works by binding to alpha-2 type adrenoceptors in the central nervous system. This action, specifically in the locus coeruleus, helps to counteract the autonomic symptoms of opioid withdrawal. These alpha-2 receptors respond to high levels of catecholamines (i.e., epinephrine and norepinephrine) in the blood and exert negative feedback on descending sympathetic nerves that project to the adrenal medulla and stimulate catecholamine production. By

sympathetic nerves that project to the adrenal medulla and stimulate catecholamine production. By activating the alpha-2 receptors, lofexidine simulates higher blood catecholamine levels, thereby lessening sympathetic input to the adrenal medulla and reducing catecholamine production. Catecholamine levels in the blood subsequently drop, reducing both heart rate and blood pressure. Furthermore, increased activation of alpha-2 adrenoceptors in the prefrontal cortex is thought to mediate the

increased activation of alpha-2 adrenoceptors in the prefrontal cortex is thought to mediate the effects of alpha-2 agonist medications on ADHD symptoms.

Lofexidine shows a high affinity for the alpha-2A adrenoceptor subtype, which is thought to be responsible for its reduced antihypertensive action relative to clonidine. Hypotension may still occur in some subjects, particularly those who are elderly or taking additional antihypertensive medications. In addition, transient increases in blood pressure have been noted following abrupt discontinuation of lofexidine.

Adverse effects of lofexidine are similar to other alpha-2 agonists and include sedation, insomnia, dry mucous membranes, dizziness, weakness, and hypotension. When compared with clonidine, lofexidine is reported to have a lower incidence of adverse effects, particularly hypotension and sedation.

One small trial has assessed the effect of lofexidine in children with autism, focusing on its reduction of concomitant ADHD symptoms. Using a double-blind placebo-controlled cross-over design, Niederhofer et al. (2002) administered lofexidine to a group of children with autistic disorder who also presented with significant symptoms of distractibility, hyperactivity, and impulsivity. The study reported reductions in both parent and teacher symptom ratings, primarily in the domain of

study reported reductions in both parent and teacher symptom ratings, primarily in the domain of hyperactivity. However, clinician-rated symptoms did not differ between lofexidine and placebo. No sedation was reported in the trial, but several children experienced hypotension, requiring reduced dosing of lofexidine. Although no further studies have replicated lofexidine’s effects on ADHD symptoms in autism, a larger placebo-controlled trial of extended-release guanfacine also reported

symptoms in autism, a larger placebo-controlled trial of extended-release guanfacine also reported significant reductions in hyperactivity scores (Scahill et al. 2015). While further research is needed to explore the clinical utility of alpha-2 agonists in autism, it is unclear whether lofexidine offers any benefits over similar agents already approved by the FDA.

### Longitudinal  ### Longitudinal Research in Autism Peter Szatmari Department of Psychiatry and Behavioural Neurosciences, McMaster University Hamilton Health Sciences Corporation, Hamilton, ON, Canada

**Synonyms** Cohort studies; Longitudinal; Natural history; Outcome; Prospective  **Definition** Longitudinal studies in autism are important for several reasons: First, they help to inform families and clinicians about the range of outcomes that may be expected in relation to a diagnosis such as autism. Additional reasons include opportunities to monitor change in symptom profile and comorbidities such as medical problems, as well as the ability to follow the acquisition of activities of daily

such as medical problems, as well as the ability to follow the acquisition of activities of daily living such as friendship, vocational skills and self-help. If predictor or mediator variables are identified that are potentially modifiable these may inform the development of new intervention strategies that could be tested in randomized control trials.

Longitudinal studies comprise a set of study designs that have the following features in common. The designs are (1) observational, i.e., they involve studying individuals that have been naturally selected to a particular group or exposure as compared to random assignment by researchers to a particular group as in experimental designs; (2) the individuals are sampled by exposure (or diagnosis), not by outcome as in case-control studies; and (3) they are generally prospective, i.e., the

not by outcome as in case-control studies; and (3) they are generally prospective, i.e., the individuals of interest are followed chronologically and reassessed at one or more later time points. Such studies are very useful for a number of reasons but commonly used to examine predictors and outcomes. Predictors are early factors or characteristics of the individual or his/her environment that are associated with variation in later-occurring outcomes. Outcomes may be consequences of a diagnosis

associated with variation in later-occurring outcomes. Outcomes may be consequences of a diagnosis or of early predictors of interest. Longitudinal studies can also be used to investigate developmental trajectories or the rate of change in a domain over time. Mediators and moderators of outcome can also be studied as a special class of predictor variables. Mediators are variables that might account for change over time, and moderators are variables that modify the association between predictor

for change over time, and moderators are variables that modify the association between predictor and outcome.

Prospective cohort studies assemble a group of similar individuals (a “cohort”) at one time point. These individuals are then followed up over one or more time points to determine whether and how variation in certain baseline factors relates to variation in outcomes of interest. If the cohort is followed over three or more time points (including baseline), trajectories or pathways of particular symptoms, abilities, or characteristics may be plotted to describe the rate and shape of change over

abilities, or characteristics may be plotted to describe the rate and shape of change over time. Such designs also minimize measurement error due to recall bias. Drawbacks of these studies include greater expense and length of time to complete data collection.

### Loose Associations  ### Lorazepam Emma Lecarie Yale Child Study Center, New Haven, CT, USA  **Synonyms** Ativan; Benzodiazepine  **Definition** A benzodiazepine medication used to relieve anxiety. Lorazepam is also used to treat irritable bowel syndrome, epilepsy, insomnia, nausea/vomiting from cancer treatment, and to control agitation caused by alcohol withdrawal. Additionally, it is used for surgery to interfere with memory formation and to sedate those who are being mechanically

used for surgery to interfere with memory formation and to sedate those who are being mechanically ventilated. Lorazepam works by slowing activity in the brain to allow for relaxation. It acts as a sedative, hypnotic, anticonvulsant, and has muscle relaxant properties. Lorazepam primarily works by modifying the amount and action of gamma-aminobutyric acid (GABA), specifically enhancing the effects of the GABA neurotransmitter at the GABA receptors by increasing the frequency of opening of the

of the GABA neurotransmitter at the GABA receptors by increasing the frequency of opening of the chloride ion channels of the GABA receptors. Lorazepam was developed by D.J. Richards, the President of Research of Wyeth Pharmaceuticals, in 1977. This benzodiazepine comes as a tablet or concentrate to take by mouth and is usually taken two or three times a day with or without food. It can also be given as an injection into a muscle or vein, with the onset of effects occurring between one and

be given as an injection into a muscle or vein, with the onset of effects occurring between one and thirty minutes and lasting for up to a day. If lorazepam is taken intravenously, the individual should be closely monitored. Lorazepam also comes in the forms of a skin patch, an oral solution, and a sublingual tablet. Lorazepam is high-potency and fast-acting, with a biological half-life of only 10–20 hours. The brain has extra benzodiazepine drug receptor capacity, so larger doses of lorazepam

hours. The brain has extra benzodiazepine drug receptor capacity, so larger doses of lorazepam leads to stronger and longer-lasting effects. Since it is fast-acting, lorazepam works best to treat fast onset panic anxiety.

Common side effects of lorazepam include sedation, weakness, sleepiness, unsteadiness, dizziness, confusion, low blood pressure, decreased effort to breathe, increased risk of suicide for those who are depressed, and inhibition of the formation of new memories. Physical and/or psychological dependence may occur. Larger doses of lorazepam may be required to acquire the same effect if being used long-term. Benzodiazepine withdrawal syndrome may occur if lorazepam is stopped suddenly after

used long-term. Benzodiazepine withdrawal syndrome may occur if lorazepam is stopped suddenly after long-term use. Withdrawal symptoms occur in one-third of individuals who have been using benzodiazepines for longer than 4 weeks. Relatedly, it may be necessary to increase doses to sustain effectiveness if lorazepam treatment continues for longer than 4–6 months. Lorazepam is used to treat elderly individuals with either anxiety or other related conditions. Long-term cognitive effects, including

individuals with either anxiety or other related conditions. Long-term cognitive effects, including reduced recall and psychomotor slowing, in addition to the absence of therapeutic benefit, emphasizes the cognitive toxicity of long-term use of lorazepam in this population.

GABA receptors have been found to be reduced in the parietal cortex, frontal cortex, and cerebellum, which are three brain areas that have been associated with the development of autism. This finding suggests widespread GABA dysfunction in the brains of individuals with autism and the relation to the use of lorazepam to enhance the effects of the GABA neurotransmitters. The safety of lorazepam in children with autism has not been proven. There are no currently approved medications to treat the

children with autism has not been proven. There are no currently approved medications to treat the core symptoms of autism. Benzodiazepines are being used to treat the epilepsy and anxiety symptoms in children with autism. Lorazepam has been found to moderately improve catatonic symptoms, or the inability to move normally, in multiple cases of individuals with autism. It is considered a safe and effective medical treatment for catatonia in ASD. Lorazepam has also been studied as a potential

effective medical treatment for catatonia in ASD. Lorazepam has also been studied as a potential medication for aggression in autism. It was not found to have a significant effect on aggression and may have an inhibiting effect on the outcome of decreased aggression due to exercise.

### Lord, Cathy Audrey Thurm1 and Somer Bishop2,3 1Neurodevelopmental and Behavioral Phenotyping Service, Intramural Research Program, National Institute of Mental Health, National Institutes of Health, Bethesda, MD, USA

2Department of Psychiatry, University of California, San Francisco, CA, USA 3Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA  **Name and Degrees** Dr. Catherine Lord Ph.D. in Psychology and Social Relations, Harvard University  **Major Appointments (Institution, Location, Dates)** Dr. Lord is currently Director of the Center for Autism and the Developing Brain (CADB) at Weil Cornell Medical College and an attending psychologist at New York Presbyterian Hospital. She also

Cornell Medical College and an attending psychologist at New York Presbyterian Hospital. She also currently holds the following appointments:

Professor of Psychology in Psychiatry, Psychiatry, Weill Cornell Medical College 2012-present.
Professor of Psychology in Pediatrics, Pediatrics, Weill Cornell Medical College 2012-present
Previous positions include: Visiting professor, NYU Child Study Center and NYU School of Medicine Previously, 2008–2009

Uri Bronfenbrenner Distinguished Professor of Psychology, Psychiatry and Pediatrics, University of Michigan, Director of the University of Michigan Autism and Communication Disorders Center, 2001–2010
Professor of Psychiatry, University of Chicago, 1993–2001 Clinical Professor of Psychiatry, University of North Carolina, Chapel Hill, 1990–1993
Assistant Professor, Associate Professor and then Professor of Pediatrics, University of Alberta School of Medicine, 1982–1990

Assistant Professor at the Institute of Child Development, University of Minnesota, 1977–1981
 **Major Honors and Awards** Dr. Lord has received over 35 awards and honors from local, national and international bodies, too many to identify individually here, but a few noteworthy honors and awards include:

National Science Foundation Graduate Fellow, 1971–1975 National Institute of Mental Health (NIMH) Research Scientist Award, 1995–2000 Fellow, Society of Clinical Psychology, American Psychological Association, 1998
Chair, Committee on the Effectiveness of Early Intervention in Autism, National Academy of Science/National Research Council 1998–2001

Fellow, Society for Child and Adolescent Clinical Psychology, 2002 Irving B. Harris Early Childhood Award, 2004 Fellow, Association for Psychological Science, 2010 American Psychological Association (APA) Award for Distinguished Contribution to Applied Research, 2010
Award for Distinguished Scientific Contributions to Clinical Psychology, Society of Clinical Psychology, 2011

American Psychological Association (APA) Society of Clinical Child and Adolescent Psychology Lifetime Achievement Award, 2013

Member, National Academy of Medicine, 2014  **Landmark Clinical, Scientific, and Professional Contributions** Catherine Lord has contributed significantly to the field of autism research in many domains, including her seminal longitudinal studies on early diagnosis of the disorder (Anderson et al. 2014; Lord et al. 2006), her contributions to understanding the nosology and basic characterization of core deficits of ASD, and her involvement in developing and testing treatments (Lord and Jones 2013;

core deficits of ASD, and her involvement in developing and testing treatments (Lord and Jones 2013; Lord et al. 2005). While these contributions have formed the basis for much of our understanding of the behavioral features of ASD, arguably, her most significant contribution lies in her work on the development and validation of standardized diagnostic instruments for individuals with ASD of different ages and abilities. Through her training and collaborations with Sir Michael Rutter, she created

ages and abilities. Through her training and collaborations with Sir Michael Rutter, she created the Autism Diagnostic Interview (Le Couteur et al. 1989), and then the Autism Diagnostic Observation Schedule (Lord et al. 1989), two of the most widely used and well-established instruments for diagnosis and phenotypic characterization in clinical and research settings across the world. Dr. Lord collaborated in the development of the Social Communication Questionnaire (Berument et al. 1999), which

in the development of the Social Communication Questionnaire (Berument et al. 1999), which is a widely used screening tool. More recently, Dr. Lord has been involved in several other measure development efforts, largely inspired by calls from the ASD research community that different types of measures are needed for different purposes. These include the Autism Screening Interview (ASI), a brief telephone interview of ASD symptoms (Bishop et al. 2016), the Brief Observation of Social

a brief telephone interview of ASD symptoms (Bishop et al. 2016), the Brief Observation of Social Communication Change (BOSCC; Grzadzinski et al. 2016), a measure designed to capture change in social-communication symptoms in response to treatment, and the Observation of Spontaneous Expressive Language (OSEL), a measure of spontaneous, functional language in children with ASD (Kim et al. 2014).

In addition to her numerous scientific contributions, Dr. Lord has had a major impact on clinical practice and policy in the field of ASD by contributing to various local, national and international efforts. Locally, one of the many examples is her contributions to the development of both research and treatment for TEACCH, a state-wide program in North Carolina that has served as a model for educating children with autism throughout the world. Nationally, Dr. Lord was chosen to lead or serve on

children with autism throughout the world. Nationally, Dr. Lord was chosen to lead or serve on many committees charged with developing and publishing guidelines for the field. One highly significant example was her role as chair of the committee on educational interventions for children with autism sponsored by the National Academy of Sciences, which resulted in the landmark publication (Lord and McGee 2001). From 2007 to 2014, she served on the DSM-5 committee that provided updated diagnostic

McGee 2001). From 2007 to 2014, she served on the DSM-5 committee that provided updated diagnostic guidelines for ASD and other neurodevelopmental disorders. She has continued to lead the field by providing up to date summaries of research and recommendations about how to implement current best practices for diagnosis and treatment of ASD within the community (Lord and Bishop 2010; Lord and Bishop 2015).

In the last 10 years, Dr. Lord has been part of larger efforts to extend ASD research beyond behavioral characterization of ASD and promote interdisciplinary cooperation between clinical and neurobiological researchers. She has helped lead several highly influential efforts designed to elucidate biological markers and genetic aspects of the disorder. For instance, she was part of a core group of scientists involved in developing the Simons Simplex Collection (SSC), a publicly available

of scientists involved in developing the Simons Simplex Collection (SSC), a publicly available repository of cell lines and phenotypic data from probands with ASD and their family members (Fischbach and Lord 2010). Her leadership in behavioral phenotyping for this project has helped facilitate numerous genetic discoveries (e.g., Sanders et al. 2015) and has also allowed for multisite evaluation of diagnostic practices for the disorder (Lord et al. 2012). Through these efforts, Dr. Lord has

of diagnostic practices for the disorder (Lord et al. 2012). Through these efforts, Dr. Lord has repeatedly emphasized the importance of considering the developmental aspects of the disorder, using findings to illustrate that developmental trajectories of behavioral variables may be most important in advancing understanding of the biology of ASD (Lord et al. 2015).

**Short Biography** Dr. Lord is a clinical psychologist who has worked as a clinician-researcher in Canada and the USA and has collaborated and contributed to autism research worldwide. In her various positions, she has split her time between evaluating children, adolescents, and adults with ASD and engaging in major research efforts to lead the field in diagnosis and characterization of ASD across the lifespan. Dr. Lord has also advised numerous graduate students, post-doctoral fellows, and

the lifespan. Dr. Lord has also advised numerous graduate students, post-doctoral fellows, and early-career researchers, many of whom now hold clinical and/or research positions at institutions in the USA and abroad. She began her career in autism as an undergraduate, where she was a student at UCLA at the time when Dr. Ivar Lovaas was working on his groundbreaking treatment paradigm for children with developmental disabilities, applied behavioral analysis. Having worked directly with children

with developmental disabilities, applied behavioral analysis. Having worked directly with children with autism under his supervision, it was at this point that she developed a passion for helping children with autism learn to talk. After graduate school in psychology at Harvard University, she interned at TEACCH, a one-of-a-kind program in North Carolina that includes services throughout the lifespan for individuals with autism, where she later returned to launch one of the longest lasting

lifespan for individuals with autism, where she later returned to launch one of the longest lasting longitudinal studies of autism that continues to this day.

Other positions Dr. Lord has held include her faculty appointment at the University of Alberta, where she was part of a strong multidisciplinary team of clinicians, and her appointment in child psychiatry at the University of Chicago within a collaborative and clinically skilled group of clinician researchers. During the last 15 years, Dr. Lord has founded two major clinical-research centers, the University of Michigan Autism and Communication Disorders Center (UMACC), and the Center for

the University of Michigan Autism and Communication Disorders Center (UMACC), and the Center for Autism and the Developing Brain (CADB) at Weill Cornell Medical College. These centers have served as models for the integration of clinical practice and research, yielding data from thousands of clinically referred and research ascertained individuals with ASD and non-ASD diagnoses. In turn, these data have provided critical information about psychometric properties of numerous assessment

these data have provided critical information about psychometric properties of numerous assessment instruments, which has informed the modification of existing tools and development of new tools. Dr. Lord has also participated in groundbreaking clinical trials for early treatment and characterization of the disorder within the context of behavioral development and ongoing phenotype-genotype efforts.

### Loss of Voice  ### Lovaas Approach Svein Eikeseth Department of Behavioral Science, Oslo and Akershus University College, Lillestrøm, Norway
 **Definition** The Lovaas approach was pioneered by O. Ivar Lovaas in the 1970s and 1980s. Lovaas himself used the term “the UCLA Model” to describe this treatment. Defining features of the Lovaas approach include:

*   **Behavioral Emphasis.** Autism is analyzed in terms of separate behaviors that include excesses (behaviors displayed too often or intensely) and deficits (behaviors that are not displayed often or well enough). Excesses and deficits exhibited by children with autism are addressed using principles of behavior analysis and learning psychology.

*   **Family Involvement.** Lovaas strongly emphasized family participation because research suggested that parental involvement enabled children to make lasting improvements and carry over these improvements from professional settings, such as special education programs, clinics and hospitals, to the home environment community. To optimize treatment effects, parents are trained to become co-teachers for their child; they learn how to manage the child’s challenging behaviors and how to make the

for their child; they learn how to manage the child’s challenging behaviors and how to make the child use the skills he or she has learned from treatment in everyday life.

*   **One-to-One Instruction.** During the first 6 to 12 months of intervention, the bulk of the teaching is carried out in a one-to-one setting because it allows for highly individualized teaching and because children with autism may initially learn more readily in such a setting than in groups. The individual instruction focuses on teaching the child key communication, play, and social skills to prepare children to enter group settings.

*   **Integration.** When the treatment team determines that the child with autism is ready to enter a group setting, the team chooses a setting where the peers are as typical as possible, as children with autism often display more appropriate behaviors when integrated with typical peers than when placed in group with other children with autism. A member of the treatment team accompanies the child to the integrated setting in order to help the child be successful.

*   **Comprehensiveness.** The curriculum addresses all three core deficits in autism (i.e., deficits in communication, social skills and social interests, and excess stereotyped and ritualistic behaviors). It also addresses other behavioral excesses and deficits that may be associated with autism such as aggression and self-injurious behavior, attention deficits, learning delays, feeding problems, and difficulties with motor development and self-help skills.

*   **Intensity.** Together with treatment method, treatment intensity is perhaps the most important element of the Lovaas Approach. An effective intervention is believed to require highly intensive teaching to allow the child with autism (who also may have intellectual disability) to catch up, as much as possible, with typical peers. Research on the Lovaas approach indicates that 30–40 h per week of one-to-one intervention may be required to produce optimal gains.

*   **Duration.** In most cases, practitioners of the Lovaas approach recommend that intervention last for a minimum of two years and may continue for several additional years with a reduced number of hours of one-to-one instruction along with support for participation in school.

**Historical Background** The Lovaas approach can be traced back to the late 1950s and the early 1960s, when researchers began using operant principles, derived from the animal laboratory, to address human problems. Ferster and DeMyer (1961) conducted the first study demonstrating the use of operant condition to teach individuals with autism to learn new skills. Later, Wolf, Risley, and Mees (1964) reported the first behavioral intervention to reduce problem behaviors in a child with autism.

From 1965 until 1970, Lovaas and colleagues published a number of seminal studies, reporting the first demonstration of an effective way to teach nonverbal children to speak (Lovaas, 1966; Lovaas et al. 1966a), a study on establishing social (secondary) reinforcers (Lovaas et al. 1966b), a procedure for teaching children to imitate (Lovaas et al. 1967), and several studies on interventions to reduce life-threatening self-injury and aggression (c.f., Lovaas et al. 1965b) and a pioneering

to reduce life-threatening self-injury and aggression (c.f., Lovaas et al. 1965b) and a pioneering investigation of antecedents and consequences that maintained a problem behavior (Lovaas and Simmons 1969), a forerunner of what is now called experimental functional analysis.

Also in the 1960s, Lovaas and colleagues conducted studies indicating that punishment procedures involving aversives such as mild doses of electric shock could be effective in reducing extreme, sometimes life-threatening aggression or self-injury. By the late 1980s, however, Lovaas felt such procedures had become unnecessary because non-aversive interventions had become so sophisticated and successful that aversives were no longer necessary. Accordingly, he stopped using them at that time.

In 1971, Lovaas and colleagues showed that many children with autism have a learning style that could hinder them from learning important skills and generalizing these skills outside the intervention setting. This style involved attending to only one element of a complex stimulus (e.g., visual but not auditory components of a stimulus). They called this style stimulus overselectivity (Lovaas et al. 1971) and published several additional studies on this topic during the 1970s.

In 1973, Lovaas and colleagues published their first long-term follow-up study (Lovaas et al. 1973). Twenty children with autism participated. After 12–14 months of behavioral treatment, stereotyped behaviors including echolalia decreased and appropriate speech, appropriate play, and social nonverbal behaviors increased. Some of the children were discharged to a state hospital while others remained with their parents, who had received parent training. Follow-up assessments 1–4 years after the

with their parents, who had received parent training. Follow-up assessments 1–4 years after the end of treatment showed that children whose parents were trained to carry out the behavioral treatment continued to improve, while children who were institutionalized regressed.

From the 1973 follow-up study, Lovaas made six important observations that occasioned what has been labeled the 1987 Early Intervention Project, the landmark study for which Lovaas is best known. First, the youngest children in the 1973 study appeared to make the greatest gains; hence, the 1987 study focused on younger children. Second, treatment effects in the 1973 study were situation specific, and as a result, treatment was moved away from a hospital or clinic setting and into the children’s

and as a result, treatment was moved away from a hospital or clinic setting and into the children’s home and everyday environment. Third, because response generalization such as becoming more social after learning language rarely occurred, treatment in the 1987 study was designed to target most or all of the children’s excess and deficit behaviors. Fourth, some parents became skilled teachers of their children and were the best allies in helping accelerate and maintain treatment gains. Fifth,

their children and were the best allies in helping accelerate and maintain treatment gains. Fifth, they offered treatment for most of the child’s waking hours, for 2 or more years, and focused on teaching the children to develop friendships with typical peers. According to Lovaas, this therapeutic arrangement was designed to resemble the type of learning environment available to typical children, who learn from their environment from the time they wake up in the morning and until they go to

who learn from their environment from the time they wake up in the morning and until they go to sleep, 365 days per year.

Lovaas’s 1987 report indicated that children with autism treated with the Lovaas approach achieved vastly better outcomes than similar children who received little or no such treatment. Lovaas described 9 of the 19 intensively treated children as “normal functioning.” In so doing, he challenged the prevailing belief that, although children with autism might be able to learn isolated skills, they would always be delayed and socially isolated. The study sparked passionate debate. While some

they would always be delayed and socially isolated. The study sparked passionate debate. While some considered it as a breakthrough, others criticized it and argued that it was an exaggeration to describe the children with the most favorable outcomes as “normal functioning.”

In the 1990s, Lovaas built on the 1987 study by co-authoring a long-term follow-up of children in the 1987 study as well as several replication studies.

**Rationale or Underlying Theory** In the Lovaas approach, a working hypothesis is that children with autism have a learning deficit that is biologically based and is responsible for the behavioral deficits and excesses exhibited by these children but that can be overcome with specialized instruction. The Lovaas approach directly targets these excesses (e.g., stereotyped behaviors, aggression, and self-injurious behaviors) and deficits (e.g., communication, play, and social skills) rather than

self-injurious behaviors) and deficits (e.g., communication, play, and social skills) rather than attempting to address some hypothesized underlying conditions or processes or attempting to address “autism” per see. Lovaas argued that there is no “magic bullet” in autism treatment and that all behavioral excesses and deficits must be addressed separately. In the Lovaas approach, the treatment environment should differ as little as possible from the typical educational environment in order to help

should differ as little as possible from the typical educational environment in order to help the child with autism transfer skills to the typical environment and function more successfully in that setting. Lovaas emphasized that typically developing children learn during all waking hours, every day. To approximate this learning environment, and to allow the child with autism to catch up as much as possible with his/her peers, Lovaas argued that an appropriate treatment environment should be in

possible with his/her peers, Lovaas argued that an appropriate treatment environment should be in effect most of the day, 7 days per week.

**Goals and Objectives** The curriculum is individualized based on each child’s needs and stages of development that typically developing children go through but tends to follow a sequence described in teaching manuals and is summarized below:

**Beginning Curriculum.** Beginning targets include learning readiness skills in the areas of attention, communication, social initiations, and play. Examples include sitting in a chair, responding to simple instructions such as “come here” and “wave bye-bye,” pointing, requesting favorite items, joint attention, matching identical objects, imitating gross motor actions or imitating actions with objects, imitating sounds and words, identifying and naming objects, playing independently with

objects, imitating sounds and words, identifying and naming objects, playing independently with toys, and basic turn taking and interactive skills such as rolling a ball to and from an adult.

**Intermediate Curriculum.** Intermediate targets include further language training such as identification and naming of abstract concepts, parallel play, turn taking, imitating sentences, pre-academic skills such as identifying letters and numbers, drawing and tracing, and self-help skills such as dressing, toileting, drinking from an open cup, and increasing the range of foods and drink taken.

**Advanced Curriculum.** Advanced targets include conversation and asking questions, advanced pretend play and cooperative play, social-emotional skills such as theory of mind, advanced academic skills, observational learning, and learning in the classroom environment.

**Treatment Participants** The Lovaas approach was developed primarily for children with autism who have mild to moderate intellectual disability and are under the age of 42 months at treatment onset. However, it has been evaluated with other groups, including children with autism and more severe intellectual disability, children with autism who entered treatment up to the age of 7 years, and non-autistic children with intellectual disability. Several studies have examined relations between

non-autistic children with intellectual disability. Several studies have examined relations between intake variables and outcome measures. A meta-analysis published in 2010 by Eldevik and colleagues indicated that the most robust finding to date is a strong positive correlation between treatment intensity and outcome.

**Treatment Procedures** Intervention methods build on detailed knowledge of principles and procedures from behavior analysis. Discrete trial teaching is a highly structured teaching procedure used to maximize learning. It is used to establish a number of important skills, including cognitive skills, communication, play, social, and self-help skills. The teaching strategy involves (a) breaking skills into small steps, (b) teaching each step of the skill individually until mastered, (c)

skills into small steps, (b) teaching each step of the skill individually until mastered, (c) providing repetitions of teaching steps, (d) prompting the correct skill and fading (removing) the prompts whenever possible, and (e) using reinforcement and stimulus control procedures.

Natural environment teaching is used to teach behaviors in the situations where they routinely occur. During mealtime, for example, the child is reinforced for sitting nicely or instructed how to use a knife and fork appropriately. Whenever possible, the reinforcer is the consequence that naturally follows the target behavior such as going outside to perform a desired activity after practicing tying shoes.

Task analyses and chaining are used to break down complex behaviors (e.g., toy play and language) into smaller units that can be reliably measured and more easily taught. For example, to teach language skills the behavioral components of each skill are identified, and teaching begins with the most basic components such as vocal imitation of sounds. These individual behaviors are then systematically taught and chained together to make one complex behavior.

School integration begins once a range of skills have been acquired that enable the child to access materials, follow the curriculum, and interact with peers in the preschool or school environment. The aim is for a child to learn increasingly from peers, the class teacher, and the school curriculum. Initially, a therapist shadows the child at school, prompting and reinforcing the child for engagement in social interactions and academic activities while implementing behavior support strategies

in social interactions and academic activities while implementing behavior support strategies to minimize inappropriate or interfering behaviors. Once the child can follow segments of activities, whole activities, or parts of the full school day, the shadow will then help the child to learn new information and new skills directly from the school environment and not specifically from the one-to-one teaching. For a child who does not learn sufficiently from the classroom environment, the therapist

teaching. For a child who does not learn sufficiently from the classroom environment, the therapist will continue to shadow on a long-term basis and concentrate on integrating the child for activities in which he/she can be successful. Time is also allocated to ongoing one-to-one teaching, both at home and school, during which individual learning goals, including independent living skills, can be addressed more efficiently than in the classroom. To promote each child’s independence, shadowing is

addressed more efficiently than in the classroom. To promote each child’s independence, shadowing is gradually reduced on a task-specific basis or for periods of the school day.

**Efficacy Information** In Lovaas’s 1987 study, 19 children received 40 h per week of one-to-one treatment based on the Lovaas approach for a minimum of 2 years. A comparison group of 19 children received 10 h or less per week of the same treatment. A second comparison group of 21 children came from the same agency that diagnosed the majority of the other participants and received community treatment as usual. The mean age at intake was 33 months. When reevaluated at a mean age of 7 years,

as usual. The mean age at intake was 33 months. When reevaluated at a mean age of 7 years, children in the experimental group had gained an average of 20 IQ points to a mean of 83, and they had made major advances in educational placement. Nine of 19 participants achieved IQ scores of 85 or above and regular educational placement without assistance. In contrast, the two comparison groups showed little change in IQ. The experimental group maintained its gains at a second follow-up conducted when

change in IQ. The experimental group maintained its gains at a second follow-up conducted when the children averaged 13 years of age.

Similar results have been reported by other investigators, though in some studies the effect sizes were smaller than in the 1987 study. In a meta-analysis, Eldevik, Hastings, Hughes, Jahr, Eikeseth, and Cross (2009) reported effect sizes of 1.10 for IQ change and 0.66 for change in adaptive behavior. By convention, these effect sizes are considered large. However, some investigators have reported somewhat smaller effect sizes.

All studies have reported considerable variability in outcome. A meta-analysis by Eldevik et al. (2010a) sought to determine what proportion of children made clinically meaningful improvements with two metrics: the reliable change index (RCI), which is a measure of how many participants make changes that are statistically significant (unlikely to be due to statistical chance), and the number needed to treat (NNT) in order to have one additional success more than would occur without treatment.

to treat (NNT) in order to have one additional success more than would occur without treatment. The RCI indicated that an IQ gain of 27 points between intake and follow-up was required for statistically reliable change and that 30% of children across studies achieved reliable change in IQ. To achieve reliable change in adaptive behavior, a gain of 21 points was required, and 21% of the participants achieved this. NNT for IQ was 5, and NNT for adaptive behavior was 7, indicating an effective

achieved this. NNT for IQ was 5, and NNT for adaptive behavior was 7, indicating an effective intervention. While researchers generally agree that the results of studies have generally been positive, there remains controversy about the scientific quality of the studies, and many have called for additional research with improved research designs.

**Outcome Measurement** The most common outcome measures used are IQ, language, and adaptive functioning. The Bayley Scales of Infant Development and the Wechsler Intelligence Scales (WIPPSI or WISC) are the most common IQ tests. The most widely used instrument to assess language is the Reynell Developmental Language Scales, but due to their severe delays in communication, many participants fail to achieve basal on the Reynell at intake. To assess adaptive behavior, the Vineland Adaptive

fail to achieve basal on the Reynell at intake. To assess adaptive behavior, the Vineland Adaptive Behavior Scales is used. Some studies have also assessed other domains, such as maladaptive behavior (using the maladaptive scale from Vineland Adaptive Behavior Scales, the Personality Inventory for Children, and the Child Behavior Checklist), school performance (using the Woodcock-Johnson III Tests of Achievement), and changes in diagnosis (using the Autism Diagnostic Interview-Revised (ADI-R)).

**Qualifications of Treatment Providers** There are currently no established programs to certify professionals to become competent Lovaas-approach therapists or Lovaas-approach supervisors. Practitioners of the Lovaas approach indicate that, to become a competent therapist, individuals should obtain a bachelor’s degree in psychology, education, or social work, with coursework in applied behavior analysis, developmental disorders, and child development. In addition, they require therapists to

analysis, developmental disorders, and child development. In addition, they require therapists to work at least three months hands-on with a child in an apprenticeship with a trained therapist. At the end of this training, the therapist must be able to apply the behavioral principles correctly during one-to-one teaching. To become a supervisor, Lovaas and colleagues have required the practitioner to be an experienced Lovaas-approach therapist and hold a master’s degree that includes graduate

to be an experienced Lovaas-approach therapist and hold a master’s degree that includes graduate courses in applied behavior analysis, developmental disorders, and child development. In addition, the supervisors must learn how to conduct staff training, develop and individualize the child’s curriculum, and work with families. These skills can be learned through working in an apprenticeship with a competent Lovaas-approach supervisor and by studying available teaching manuals, evidenced-based

a competent Lovaas-approach supervisor and by studying available teaching manuals, evidenced-based parent training programs, and typical development. Finally, the supervisor should be supervised by a Ph.D. level clinical psychologist specializing in the Lovaas approach.

### Lovaas, O. Ivar Svein Eikeseth1 and Tristram Smith2 1Department of Behavioral Science, Oslo and Akershus University College, Lillestrøm, Norway
2Department of Pediatics, University of Rochester Medical Center, Rochester, NY, USA

2Department of Pediatics, University of Rochester Medical Center, Rochester, NY, USA
Tristram Smith: deceased.  **Name and Degrees** Dr. O. Ivar Lovaas received his B.A. in Social Studies from Luther College, Decorah, Iowa, in 1951; an M.S. in psychology from the University of Washington, Seattle, Washington, in 1954; and a Ph.D. in psychology from the University of Washington in 1958.

**Major Appointments** From 1958 until 1961, Lovaas worked at the University of Washington’s Child Development Institute as an acting assistant professor. In 1961, he accepted a position as an assistant professor in the University of California, Los Angeles (UCLA), Psychology Department, where he spent the remainder of his career. He became an associate professor in 1965, tenured professor in 1967, and professor emeritus in 2004. In 1962 Dr. Lovaas founded the UCLA Clinic for the Behavioral

1967, and professor emeritus in 2004. In 1962 Dr. Lovaas founded the UCLA Clinic for the Behavioral Treatment of Children, and between 1972 and 1980, Dr. Lovaas acted as a Research Specialist at Camarillo State Hospital, Camarillo, California. In 1995, Dr. Lovaas founded the Lovaas Institute for Early Intervention (the LIFE Institute).

**Major Honors and Awards** Dr. Lovaas received many honors for his work, including an Honorary Doctorate from Luther College, a Guggenheim Fellowship, the Edgar Doll Award from Division 33 of the American Psychological Association (1994), the California Senate Award (1994), the Research Award from the American Association on Mental Retardation (1994), Distinguished Guest Faculty Award from Ohio State University (1994), a Golden Key Honorary Award (2000), the Distinguished Research

from Ohio State University (1994), a Golden Key Honorary Award (2000), the Distinguished Research Contribution Award from Division 53 of the American Psychological Association (2001), and the California Association for Behavior Analysis award for outstanding contributions to behavior analysis (posthumous, 2011). In addition, he was an honorary member of a number of organizations including Autism Society of America, the Norwegian Association for Behavior Analysis (NAFO), the Uruguayan Society

Society of America, the Norwegian Association for Behavior Analysis (NAFO), the Uruguayan Society for Analysis and Behavior Therapy (SUATEC), and the American Board of Medical Psychotherapies.

**Landmark Clinical, Scientific, and Professional Contributions** From 1965 and on, Lovaas and colleagues published a number of seminal studies transforming interventions and services for autism. An important initial contribution was the development of an apparatus and recording procedure allowing repeated and reliable measures of deficit language and social behaviors and excess stereotyped, aggressive, and self-injurious behaviors (Lovaas et al. 1965a, b). This recording procedure allowed

aggressive, and self-injurious behaviors (Lovaas et al. 1965a, b). This recording procedure allowed moment-to-moment assessment of the dependent variables, providing the investigators immediate feedback regarding the effectiveness of various treatment variables. This innovation, together with the use of single subject research designs, facilitated the groundbreaking finding subsequently presented by Dr. Lovaas and colleagues.

From 1965 until 1970, Lovaas and colleagues reported, among other findings, the first demonstration of an effective way to teach nonverbal children to speak (Lovaas, 1966; Lovaas et al. 1966a), a study on establishing social (secondary) reinforcers (Lovaas et al. 1966b), a procedure for teaching children to imitate (Lovaas et al. 1967), and several studies on interventions to reduce life-threatening self-injury and aggression (c.f., Lovaas et al. 1965b) and a pioneering investigation of

self-injury and aggression (c.f., Lovaas et al. 1965b) and a pioneering investigation of antecedents and consequences that maintained a problem behavior (Lovaas and Simmons 1969), a forerunner of what is now called experimental functional analysis.

Also in the 1960s, Lovaas and colleagues conducted studies indicating that punishment procedures involving aversives such as mild doses of electric shock could be effective in reducing extreme, sometimes life-threatening aggression or self-injury. By the late 1980s, however, Lovaas felt such procedures had become unnecessary because non-aversive interventions had become so sophisticated and successful that aversives were no longer necessary. Accordingly, he stopped using them at that time.

In 1971, Lovaas and colleagues showed that many children with autism have a learning style that could hinder them from learning important skills and generalizing these skills outside the intervention setting. This style involved attending to only one element of a complex stimulus (e.g., visual but not auditory components of a stimulus). They called this style stimulus overselectivity (Lovaas et al. 1971) and published several additional studies on this topic during the 1970s.

In 1973, Lovaas and colleagues published their first long-term follow-up study (Lovaas et al. 1973). Twenty children with autism participated. After 12–14 months of behavioral treatment, stereotyped behaviors including echolalia decreased, and appropriate speech, appropriate play, and social nonverbal behaviors increased. At the end of treatment, some of the children were discharged to a state hospital, while some children remained with their parents, who had received parent training. Follow-up

while some children remained with their parents, who had received parent training. Follow-up assessments 1–4 years after the end of treatment showed that children whose parents were trained to carry out the behavioral treatment continued to improve, while children who were institutionalized regressed.

Based on data from this study, Lovaas hypothesized that treatment effects could be optimized if intervention was started early in the child’s life and if intervention was comprehensive, that is, addressing all behavior excesses and deficits exhibited by a particular child. In addition, Lovaas argued that intervention had to be intensive; that is, it should provide a learning environment for the child throughout the whole day, be carried out in the child’s natural environment (such as at home

child throughout the whole day, be carried out in the child’s natural environment (such as at home and in school, rather than in an institution), and include persons who are part of the child’s natural environment (such as parents, teachers, peers). Finally, Lovaas argued that the children should enter typical classes to access typical peers to model appropriate behaviors, rather than attend special classes.

In 1970, Lovaas initiated the UCLA Young Autism Project in order to provide treatment based on these principles. In 1987, he published the first set of results in the landmark study for which he is now best known: the report entitled Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children, which appeared in the Journal of Consulting and Clinical Psychology. This report indicated that children with autism treated with the Lovaas Approach achieved

This report indicated that children with autism treated with the Lovaas Approach achieved vastly better outcomes than similar children who received little or no such treatment. Lovaas described 9 of the 19 intensively treated children as “normal functioning” and possibly even recovered. In so doing, he challenged the prevailing belief that, although children with autism might be able to learn isolated skills, they would always be delayed and socially isolated. The study sparked passionate

isolated skills, they would always be delayed and socially isolated. The study sparked passionate debate. While some considered it as a breakthrough, others criticized it and argued that it was an exaggeration to describe the children with the most favorable outcomes as normal functioning.

Also in 1987, Lovaas and colleagues presented a review of stereotyped behavior (Lovaas et al. 1987), which they called self-stimulatory because, they argued, it was maintained by the sensory and/or perceptual stimuli produced by the behavior itself (e.g., vestibular and visual stimulation as reinforcement for body rocking).

In the 1990s, Lovaas built on the 1987 study by co-authoring a long-term follow-up of children in the 1987 study (McEachin et al. 1993), as well as several replication studies. He also obtained two federal grants to support replications by other investigators. He continued to publish important work until he was in his late seventies, notably a revision of his intervention manual (Lovaas 2003).

**Short Biography** Lovaas was born on May 8, 1927, in Lier, Norway. His father was a journalist. During the Second World War, Norway was occupied by the Nazis for 5 years (1940–1945). At that time, Lovaas was in his teens, and this experience came to affect Lovaas in many ways. Most importantly, it made him reflect on the “nature versus nurture” issue. He believed that the Germans could not be inherently evil, which in turn, convinced him that the environment could exert highly powerful

be inherently evil, which in turn, convinced him that the environment could exert highly powerful effects on behaviors.

In 1947, shortly after the Second World War, Lovaas graduated from Gymnasium (high school). In 1950, after serving his military duty in the Norwegian air force as a medic, Dr. Lovaas immigrated to the USA, attending Luther College in Decorah, Iowa, on a violin scholarship. Subsequently, in 1951, he went on to the University of Washington, Seattle, where he stayed for the next 10 years, receiving his M.S. and Ph.D. in psychology and working as an acting assistant professor. Lovaas’ interest in

his M.S. and Ph.D. in psychology and working as an acting assistant professor. Lovaas’ interest in children with autism came about accidentally. His initial research had been on how a person’s language may influence non-verbal behaviors, a process later described as instructional control or rule-governed behavior. At UCLA, Lovaas sought to extend this research by studying how to teach language to children who had communication delays and testing the effects of improved language on other

to children who had communication delays and testing the effects of improved language on other behaviors such as social interaction. After visiting a clinic for children with autism, he became convinced that he had found the ideal group for this research.

Subsequently, at the laboratories at UCLA and Camarillo State Hospital, Dr. Lovaas and colleagues conducted the groundbreaking and pioneering research, which have had tremendous influence on applied behavior analysis (ABA) and services for individuals with autism.

Alongside his research and clinical innovations, Lovaas devoted much of his energy to advocacy on behalf of autism and popularization of ABA. In the 1960s, he helped found the parent organization now called the Autism Society of America. He also became a strong proponent of moving children (and adults) with autism from large institutions into small group homes. Subsequently, as many children in his research successfully entered general education classes in public schools, he also became a

in his research successfully entered general education classes in public schools, he also became a proponent of inclusion in these classes.

Lovaas’ popularizations included one of the first films on ABA, produced in 1969, to show interventions for teaching language to children with autism. Lovaas also published two of the first ABA intervention manuals in 1977 and 1981. These manuals laid out how and what to teach, thereby making ABA accessible to many families and providers. Always quotable and not shy about extolling the benefits of ABA, Lovaas was profiled in many media outlets such as Life, Rolling Stone, the New York Times, and

ABA, Lovaas was profiled in many media outlets such as Life, Rolling Stone, the New York Times, and the CBS Evening News. He was also a popular instructor, introducing generations of students to autism and ABA.

He is survived by his wife, Nina Lovaas, four children from his first marriage, six grandchildren, and three great-grandchildren. Lovaas died at the age of 83 on August 2, in Lancaster, California, 2010.
 ### Lovan  ### Low Registration Winifred Schultz-Krohn Department of Occupational Therapy, San José State University, San José, CA, USA

**Definition** This term refers to the individual’s limited ability to notice or respond to important or salient sensory information. Although Ayres discussed “registration of sensory information,” the term “low registration” was not included in her writings about sensory integration. The term “low registration” is used in the sensory processing literature and is clearly defined by Dunn (2007) as a pattern of sensory processing where the individual has a high threshold to sensory experiences

as a pattern of sensory processing where the individual has a high threshold to sensory experiences and does not notice or detect changes in sensory situations at the same rate of others. The individual may appear passive in response to changes in sensory intensities due to limited detection of those changes. Individuals who have low registration of sensory experiences benefit from occupational therapy services designed to enhance sensory processing and improved ability to detect and respond to

services designed to enhance sensory processing and improved ability to detect and respond to changes in sensory experiences.

### Low-Tech Augmentative and Alternative Communication (AAC)  ### Low-Tech System  ### Low-Technology Device Vannesa T. Mueller Speech-Language Pathology Program, University of Texas at El Paso College of Health Science, El Paso, TX, USA

**Synonyms** Low-tech augmentative and alternative communication (AAC); Low-tech system  **Definition** Although there are differing opinions regarding the precise definition of augmentative and alternative communication (AAC) systems, technically, a low-technology (low-tech) AAC device is one that requires a power source such as a battery to operate and is very easy to program. A no-tech system is any communication device that does not require a power source. An example of a no-tech system is

is any communication device that does not require a power source. An example of a no-tech system is a picture communication board. Examples of low-tech systems are the BIGmack®, LITTLEmack®, Step-by-Step Communicator®, and the SpeakEasy® which are sold by AbleNet. See Beukelman and Mirenda (2012) for a full description of low-technology devices and their implementation.

### Loxapine  ### Loxitane 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** Loxapine  **Definition** Loxapine is a traditional antipsychotic medication developed for the treatment of schizophrenia. As with the other members of traditional antipsychotic class, it has some risk of neurological adverse effects. Loxapine has not been studied in children or adults with autism spectrum disorder.

### L-Tryptophan  ### Luria-Nebraska Neuropsychological Battery Eva Troyb1 and Deborah Fein2 1Neuropsychology, EASTCONN Regional Education Service Center, Columbia, CT, USA 2Department of Psychological Sciences, University of Connecticut, Storrs, CT, USA

**Description** The Luria-Nebraska is a neuropsychological evaluation battery that was developed to uncover the presence of cognitive impairments and to locate focal brain abnormalities that may account for these impairments in individuals 15 years of age and older. The battery consists of 11 clinical scales assessing major areas of neuropsychological functioning (motor functions, rhythm, tactile functions, visual functions, receptive speech, expressive speech, writing, reading, arithmetic,

functions, visual functions, receptive speech, expressive speech, writing, reading, arithmetic, memory, and intellectual processes), two sensorimotor scales (left hemisphere, right hemisphere), and three summary scales (pathognomonic, profile elevation, and impairment). A parallel form of this battery is available and includes an additional clinical scale that evaluates delayed recollection of previously administered memory items (intermediate-term memory scale). Since publication, other scales

administered memory items (intermediate-term memory scale). Since publication, other scales have been developed and made available to users, including 8 localization scales and 28 factor scales, some of which include few items and must be interpreted with caution (Lezak et al. 2004). Administration time usually lasts 2–3 h. Charles Golden developed a version of this battery for use in children aged 8–12 years (Golden 1981). It uses the same test stimuli with some additional materials (see Leark

8–12 years (Golden 1981). It uses the same test stimuli with some additional materials (see Leark 2004 and Golden 2011, for reviews of the children’s revision of the Luria-Nebraska).

**Historical Background** The Luria-Nebraska was published between 1980 and 1985 and was initially known as the Luria-Dakota Neuropsychological Battery during its development. The battery was based on the evaluation techniques practiced by Alexander Luria, which were compiled and organized into test items by Anne-Lise Christensen. The development of the test was based on the principle that behavior consists of sensory, cognitive, and behavioral processes, and disruptions in any of these

behavior consists of sensory, cognitive, and behavioral processes, and disruptions in any of these domains may lead to impairments in behavior. As a result, tasks assessing each area of processing were selected from Christensen’s collection by Golden and colleagues, and items that best discriminated between healthy and neurologically impaired individuals were included in the battery.

**Psychometric Data** Reports of internal consistency coefficients for the measure range between .40 and .94, with most in the .80s, while test-retest reliability and interrater reliability for all of the scales have been reported to fall between .80 and .95 (Golden et al. 1985). Several factor analytic studies support the factor structure proposed by the authors (Moses 1984a, b, c). Validation of the measure has depended on studies suggesting that this measure can accurately discriminate

of the measure has depended on studies suggesting that this measure can accurately discriminate healthy adults from adults who have suffered a brain injury (Golden et al. 1985; Kane et al. 1985; Moses et al. 1983). However, many of these studies included patients with moderate to severe impairments. Some have argued that the Luria-Nebraska includes tasks that most adults can complete successfully unless they are severely impaired or relatively low functioning, and as a result this battery may

unless they are severely impaired or relatively low functioning, and as a result this battery may be less useful in identifying mild deficits among high-functioning individuals (Adams 1980, 1984; Delis and Kaplan 1982; Lezak et al. 2004). Furthermore, the Luria-Nebraska does not appear to accurately localize the laterality of lesions, particularly among patients with aphasia (Delis and Kaplan 1982; Goldstein et al. 1987; Ryan et al. 1988; Sears et al. 1984).

**Clinical Uses** Golden et al. (1982) cautioned against the use of the Luria-Nebraska among professionals who did not receive training in neuropsychology, neurology, and Luria’s testing approach. The authors of the battery also reminded users that the results should depend upon scores obtained on the scales of this battery, patterns of responses, behavioral observations, and hypothesis testing. Many neuropsychologists have also cautioned against using this measure beyond the diagnosis of a

Many neuropsychologists have also cautioned against using this measure beyond the diagnosis of a moderate to severe neurological impairment (Adams 1984; Crosson and Warren 1982; Delis and Kaplan 1982; Spiers 1984). The test was developed at a time when neuropsychologists were being asked to identify the presence, side, and location of lesions; however, this is much less relevant in the current age of advanced imaging techniques.

### Luvox  ### Luvox CR  ### Luxembourg and Autism Andreia P. Costa and Georges Steffgen Institute for Health and Behavior, University of Luxembourg, Esch-sur-Alzette, Luxembourg

**Historical Background** Luxembourg is a small trilingual (Luxembourgish, French, and German) European country with an estimated population in July 2017 of 594,130 inhabitants. It is however, the country in Europe with the highest population growth rate and the highest net migration rate (Central Intelligence Agency 2017). There are no official figures as to the prevalence and incidence of autism in Luxembourg. However, according to the most recent statistics provided by Autism-Europe, autism

in Luxembourg. However, according to the most recent statistics provided by Autism-Europe, autism spectrum disorder affects around 1 in 100 people (Autism-Europe 2017). Therefore, it is estimated that approximately 5,900 people live in Luxembourg with a disorder in the autism spectrum. With Luxembourg’s birth rate at 11.5/1000 (Central Intelligence Agency 2017), it can also be estimated that 68 new cases of autism appear each year in the country.

Services dedicated to people with autism started to appear in Luxembourg in the 1980s and have since then increased substantially. The first organization dedicated to autism in Luxembourg was established in 1981 by the initiative of Gilbert Huyberechts, the father of a child with autism and later also the president of Autism-Europe (from 1989 to 2000). This not-for-profit organization, the Société Luxembourgeoise pour l’Aide aux Personnes Autistiques [Luxembourgish Society for the Help of

Luxembourgeoise pour l’Aide aux Personnes Autistiques [Luxembourgish Society for the Help of Autistic People], which in 1996 changed its name to Autisme Luxembourg asbl, was composed of parents, professionals, and supporters. This society had as its aims to create, develop, and manage preventive and curative measures, as well as to put in place educational and accommodation centers, and to search for a continuous integration of people with autism.

To fulfill one of its aims – to develop educational measures for people with autism – the Société Luxembourgeoise pour l’Aide aux Personnes Autistiques created in 1982 educational classes for children with autism within a mainstream elementary school. This initiative was audacious at a time when disabled children attended exclusively special education schools. In 1988, the government created an educational structure, the Institut pour Enfants Autistiques et Psychotiques [Institute for Autistic

structure, the Institut pour Enfants Autistiques et Psychotiques [Institute for Autistic and Psychotic Children] and the classes became part of the Service de l’Éducation Différenciée [Special Education Service] of the Ministry for National Education. However, most of the classes remained as they were since the beginning – in mainstream schools. The aim of the Institut was to provide children and adolescents with autism with an adequate education, social, and professional integration. For this,

adolescents with autism with an adequate education, social, and professional integration. For this, the special education classrooms insured an education adapted to their needs and implemented speech and psychomotor therapy.

To foster the personal development of people with autism, in 1989 the Société Luxembourgeoise pour l’Aide aux Personnes Autistiques also created the Centre d’Intégration et de Récréation pour Personnes atteintes d’Autisme (CIRPA) [Integration and Recreation Center for People with Autism] which offered specialized assistance and support to the needs and capacities of people with autism across their life through the organization of daily activities. In addition to the CIRPA, and to respond to a

life through the organization of daily activities. In addition to the CIRPA, and to respond to a need of professional development of adults with autism, in 1991 the Société Luxembourgeoise pour l’Aide aux Personnes Autistiques created the cooperative society Peter Pan, which promoted the training and social integration of adults with autism in a protected work environment. The cooperative society Peter Pan has since then been dissolved.

Led by the initiative of Gilbert Huyberechts and a group of parents of children with autism, in 1996 the Fondation Autisme Luxembourg [Autism Luxembourg Foundation] was created with the support of the Société Luxembourgeoise pour l’Aide aux Personnes Autistiques. The Fondation Autisme Luxembourg had as aims to develop the capacities of autistic people and to provide them with a dignified life. To achieve this, they set as aims to (a) create, develop, and manage preventive and curative measures

achieve this, they set as aims to (a) create, develop, and manage preventive and curative measures such as educational and accommodation centers for children, adolescents, and adults with autism; (b) facilitate the integration of people with autism in all educational, socio-cultural, and professional domains; (c) create and maintain a consultation service as well as a center for training and information for the parents of people with autism; and (d) facilitate research on autism.

In 2000, a not-for-profit parental association, the Association des Parents de Personnes Atteintes d’Autisme de Luxembourg [Association of Parents of Persons with Autism from Luxembourg], was created to protect the rights of people with autism and their families and to help and support them. Additionally, the association aimed to improve the care services of people with autism throughout their life by facilitating and accentuating the dialog between families and policy makers and to sensitize

by facilitating and accentuating the dialog between families and policy makers and to sensitize the general public to better integrate people with autism in the educational, socio-cultural, sportive, and professional domains.

As one of the most recent measures put in place to improve the services offered to people with autism and their families, in 2009 the Unité Autisme [Autism Unit] was added to the services proposed by the Service National de Pédopsychiatrie du Centre Hospitalier du Luxembourg [National Service of Child Psychiatry from the Centre Hospitalier du Luxembourg]. The service exists since 1995 and includes a consultation unit, a

emerging. When this happens, small differences in raw scores can have dramatically different effects on percentile ranks. As Fenson et al. (2007) explain: Because relatively few items can have such a large effect on the child’s percentile scores in these instances, users should be very cautious in drawing strong conclusions based on these reported values. The original and expanded versions of a Basic Information Form are included in the CDI. The forms are designed to gather demographic

of a Basic Information Form are included in the CDI. The forms are designed to gather demographic information useful in interpretation of test scores. The expanded version also contains several questions regarding child health history. Each CDI form takes between 20 and 40 min to complete. It should be noted that CDI short forms are available (Fenson et al. 2000). Although these may be useful to researchers and professionals who seek a quick assessment of early language, the short forms likely

researchers and professionals who seek a quick assessment of early language, the short forms likely lack the precision of the full CDIs and must be administered and interpreted with caution (Fenson et al. 2007). Members of the CDI advisory board have developed Mexican Spanish versions (including short forms) of the CDIs (Jackson-Maldonado et al. 2003). The measures have also been developed in a number of languages other than English by other researchers. A comprehensive list of these versions

number of languages other than English by other researchers. A comprehensive list of these versions is available on the CDI web site (http://www.sci.sdsu.edu/cdi/adaptations.htm).

Historical Background As Fenson et al. (2007) explain, the first systematic attempts to use questionnaires to tap parents’ knowledge of their children’s language skills were conducted by Elizabeth Bates (a codeveloper of the CDIs) and colleagues in the 1970s and 1980s (e.g., Bates et al. 1975). These inventories were later refined to tap parents’ knowledge of their children’s vocabulary and grammar and, along with the work of another prominent researcher in the area (Leslie Rescorla), laid the

and, along with the work of another prominent researcher in the area (Leslie Rescorla), laid the foundation for the development of the CDIs (Fenson et al. 2007). The CDI is an example of a measure that relies exclusively on parent report. It has endured the test of rigorous scientific scrutiny, and there is now tremendous evidence in support of its reliability and validity. As a parent-informant measure, the CDI is especially important as parent-reports can provide a more representative sample

measure, the CDI is especially important as parent-reports can provide a more representative sample of language than may be obtained in clinical settings where spontaneous speech or test results may be influenced by characteristics of the child (e.g., shyness) or testing situation (e.g., familiarity with the examiner) (Fenson et al.). For all of these reasons, the CDI has become a well-respected measure, which continues to lend support to the notion that parents are valuable, reliable, and

measure, which continues to lend support to the notion that parents are valuable, reliable, and accurate sources of information. It has been particularly welcomed from a family-centered perspective (e.g., Westby 1998) where parents and other caregivers are recognized as valuable partners in the assessment process.

Psychometric Data The CDI: Words and Gestures is normed on a sample of 1,089, and the CDI: Words and Sentences is normed on a sample of 1,461 with a relatively even distribution of girls and boys across the age ranges sampled. Although these 2007 expanded norms more closely approximate national demographic statistics than the original 2,000 norms, the developers note that the sample still underrepresents children and families with low educational and/or socioeconomic backgrounds. In addition,

children and families with low educational and/or socioeconomic backgrounds. In addition, Caucasians are slightly overrepresented, whereas Hispanics are underestimated (a likely result of exclusion criteria requiring children to be from a home where English was the primary language). Normative data for birth order and exposure to a second language are comparable to the US census statistics.

Two types of reliability of the CDIs are well documented. Internal consistency, or the degree to which items on a test measure the same content domain, indicates a very high degree of consistency. The test-retest reliability over an approximate 1–2-month interval is also high indicating excellent stability over time.

The validity of the CDIs is similarly well established. First, the CDIs demonstrate good content validity, which is the degree to which the test covers the intended content domain. Indeed, the content of the CDIs was developed in line with the language development literature, is supported by over 30 years of child language research, and has been credited as adequately sampling early vocabulary and grammar development (e.g., Westby 1998). Concurrent validity, based on the relationship between

and grammar development (e.g., Westby 1998). Concurrent validity, based on the relationship between CDI scores and various child performance measures, is particularly impressive. Moderate to high correlations have been reported across numerous studies on typically developing children as well as children with language impairment and developmental delays. For example, sections of the CDI are significantly correlated with standardized tests like the Bayley Expressive Language Scales, the Peabody

correlated with standardized tests like the Bayley Expressive Language Scales, the Peabody Picture Vocabulary Test, and the Expressive One-Word Vocabulary Test as well as language sample measures like the Index of Productive Syntax (Scarborough 1990) and Number of Different Words (NDW).

Clinical Uses The CDIs were normed on a sample of young typically developing children, and they are not intended to screen for, or identify children with, autism spectrum disorder (ASD). On the other hand, the evaluation of language is important in the assessment of young children with ASD who often demonstrate qualitative impairments in language as well as language delay. In this light, the CDIs have gained utility as a clinical tool in ASD when supplemented by direct measures of child

CDIs have gained utility as a clinical tool in ASD when supplemented by direct measures of child performance, and evidence of the accuracy of the CDIs for screening (Filipek et al. 1999) and diagnosing ASD (e.g., Luyster et al. 2007) is accumulating. The inventories are well suited as one component of a broader screening procedure (Klee et al. 1998) for language delay, which typically includes the criterion that a child of 24 months uses fewer than 50 words. Experience suggests that this

the criterion that a child of 24 months uses fewer than 50 words. Experience suggests that this criterion is commonly applied to young children at risk for ASD through use of the CDIs.

In a related vein, research shows that deficits in both receptive and expressive language are more predictive of language impairment than expressive language deficits alone (e.g., Thal et al. 1991). Because the inventories tap both receptive and expressive vocabulary, they can facilitate this analysis with the understanding that no single measure should ever be used as a basis for identification or assessment (Fenson et al. 2007). The use of the CDIs as an evaluation and assessment tool is

or assessment (Fenson et al. 2007). The use of the CDIs as an evaluation and assessment tool is reinforced by the finding that it has been found to discriminate children with language impairment from those who are developing typical language (Skarakis-Doyle et al. 2009).

Charman et al. (2003) systematically examined the language profiles of preschoolers diagnosed with ASD using the CDIs. Despite considerable variability, children with ASD demonstrated the expected receptive and expressive language deficits described above. Compared to the typical pattern, however, the word production of children with ASD was relatively in advance of word comprehension. With regard to gestures, later developing gestures (pretending to be a parent) were relatively in advance of

to gestures, later developing gestures (pretending to be a parent) were relatively in advance of early developing gestures (e.g., reaching, pointing), which involve joint reference and direct social interaction. Studies such as these are important because they demonstrate how the CDI can be useful in clinical work with young children with ASD (Charman et al. 2003).

Fenson et al. (2007) report that the CDIs are useful for documenting the language abilities of older children representing special populations, including ASD, and they have become increasingly popular for that purpose. Of course, successful implementation of the inventories to assess the language development in children with ASD requires that the scores obtained never exceed the developmental level tapped by the CDI (i.e., 30 months). The developers of the CDI are clear that when scores of

level tapped by the CDI (i.e., 30 months). The developers of the CDI are clear that when scores of older children from special populations exceed this level, serious misjudgments of communicative skills can occur due to ceiling effects.

The CDIs have also been used in the development of intervention strategies. Fenson et al. (2007) suggested that the measure be used to identify overall receptive vocabulary deficits but not to identify specific words that are or are not understood for remediation. They further note that the case may be different for productive vocabulary where specific words are unambiguously present or absent. “Clinicians may wish to use the CDIs to identify classes of words that appear to require remediation

may wish to use the CDIs to identify classes of words that appear to require remediation and supplement these findings with more targeted behavioral assessments of individual words” (p. 44).

In summary, the CDIs have proven to be clinically useful for assessment of language deficits, which represents a major characteristic of ASD. When combined with direct measures of child performance, it can be used to screen and evaluate the presence of a language deficit. It can also be used to document the language abilities of children with ASD and guide intervention efforts. As noted above, the CDIs may be particularly attractive because, unlike formal child performance tests, they are not

CDIs may be particularly attractive because, unlike formal child performance tests, they are not influenced by child situational or motivational factors. Instead, they rely on parent knowledge that has accumulated over time during which the parent has had the opportunity to observe and form impressions about the child’s skills. Of course, each clinical application raises questions to consider when determining the appropriateness of the measure and interpretation of scores. In particular, use of

determining the appropriateness of the measure and interpretation of scores. In particular, use of the CDI norms with children whose developmental age exceeds the upper limit of the inventories is not recommended. It is also prudent to recall that percentile data for some sections of the CDI are unstable, and so interpretation of all percentile data requires care.

See Also * Age Appropriate * Age Equivalents * Communication and Symbolic Behavior Scale * Communication Assessment * Developmental Delay * Early Language Milestone Scale * Expressive Language * Infant/Toddler Checklist * Language Tests * Mullen Scales of Early Learning * Peabody Picture Vocabulary Test * Prelinguistic Communication Assessment * Preverbal Communication * Receptive Vocabulary * Rossetti Infant-Toddler Language Scale * Screening Measures * Validity * Vocabulary  Historical

* Rossetti Infant-Toddler Language Scale * Screening Measures * Validity * Vocabulary  Historical Background The Republic of Macedonia has gone through a long and painful process of transition during last 25 years. The cumulative effect of the transitional recession and the socially stressful process of transition have most seriously affected marginalized groups, such as persons with autism spectrum disorders being among the most vulnerable (Trajkovski 2008).

Autism in Macedonia has a short history. It is not like the history of autism in the USA or other western developed countries. For many decades, especially during the communist period of Yugoslavia, children with autism were diagnosed as mentally retarded, schizophrenic, or some other diagnosis. Children and adults with autism missed regular treatment because of inadequate institutions, lack of finances, parental ignorance, and prejudices in the society. Many of the children with autism have

finances, parental ignorance, and prejudices in the society. Many of the children with autism have been placed into big institutions such as the Special Institute in Demir Kapija. Because of the poor economic situation, low standard and inappropriate services of social assistance; families were no longer able to care for the medical, physical, and psychological needs of their children and found institutions to be some alternative. Macedonia also has a history of reporting fewer cases of ASD than

to be some alternative. Macedonia also has a history of reporting fewer cases of ASD than can reasonably be assumed to exist nationally, indicating the probable existence of cultural biases or other errors in diagnosis (Trajkovski et al. 2005). So, there are no reliable data about the statistics on how many children with ASD are diagnosed. A National Register of persons with ASD is not established yet.

The first case study about child with autism was described more than three decades ago (Kopachev and Nastov 1983). Then, after 13 years without any activities from the governmental or nongovernmental sector, the first parent association was established in 1996. The Society started its activities and was very productive for 2 years. Children were included for treatment in special schools and institutions for rehabilitation in Skopje. Due to a lack of interest, the society stopped its activities

for rehabilitation in Skopje. Due to a lack of interest, the society stopped its activities in 1998 (Ajdinski 2005). The author of this entry started with the first doctoral thesis about autism entitled: “Immunogenetic analyses in persons with autism in Republic of Macedonia” in November 1999. Following the research and treatment of autism in the world, the Institute for Special Education and Rehabilitation at the Faculty of Philosophy and the Institute for Immunobiology and Human Genetics at

at the Faculty of Philosophy and the Institute for Immunobiology and Human Genetics at the Faculty of Medicine took the initiative and the Macedonian Scientific Society for Autism (MSSA) was established as an NGO in May 2000. MSSA directed its work towards: primary prevention of people with autism, research on the mechanisms referring to autism, research on the effects of rehabilitation of people with autism, treatment of people with autism, as well as coordination with both governmental and

with autism, treatment of people with autism, as well as coordination with both governmental and non-governmental organizations and cooperation with international organizations dealing with autism. In a very short time, the NGO established the number and presented a survey of families with autistic people and started to prepare the National register, introduced two web sites on the Internet (Autism-Macedonia and a web site of the association), became a member organization of Autism Europe, and

and a web site of the association), became a member organization of Autism Europe, and published a brochure about people with autism. Its members started to participate in scientific projects, attending at conferences in the country and abroad, and had presentations on TV and radio broadcasting. Their professional and scientific works were published in scientific journals.

There is a lack of knowledge on ASD among professionals who are involved in work with children with ASD, a lack of standardized protocols for early detection, diagnosis, and assessment tools. The precarious use of international classifications and diagnostic tools are resulting in low and late detection of autism. Officially in Macedonia, the ICD-10 diagnostic manual is still used in the health care system (ICD, 1992). In spite of our lobbying activities during last 17 years, there is still no

system (ICD, 1992). In spite of our lobbying activities during last 17 years, there is still no national strategy about autism spectrum disorders in the country.

Legal Issues, Mandates for Service Article 39 from the Constitution of the Macedonia guarantees that every citizen has the right to health care. Citizens have the right and the duty to protect and promote their own health and the health of others. Article 44 grants the right to education for every citizen. Education is accessible to everyone under equal conditions. Primary education is compulsory and free of charge. According to the Law for elementary education, special educational plans and

and free of charge. According to the Law for elementary education, special educational plans and curriculum are required to nurture and educate pupils with special educational needs. The Macedonian constitution does guarantee access to health care to its citizens, but local health care providers are not adequately equipped to serve individuals with autism spectrum disorders. Among other issues, there is limited neonatal screening for genetic disorders, the nation lacks a centralized database on

is limited neonatal screening for genetic disorders, the nation lacks a centralized database on disabilities, and the quality of health care in urban centers does not extend to rural areas. Macedonian schools do not have appropriate staff to work with children with autism according the research conducted by the state attorney office in schools in several towns in Macedonia. It showed 93 children with ASD are going to 109 primary schools. The data analyzed by the state attorney office show that

with ASD are going to 109 primary schools. The data analyzed by the state attorney office show that only a small number of the schools have a completely professional team which would work with autistic children. Of all 109 schools covered in the survey, only 39% have a professional team comprised of a teacher, a psychologist, a pedagogue, and a special education teacher. On the other hand, 28% of the schools have no staff whatsoever to work with children with ASD, nor have the parents hired at

the schools have no staff whatsoever to work with children with ASD, nor have the parents hired at their own expense a special education teacher who would work with those children (www.indepen dent.mk).

Social institutions on the local level are not capable of ensuring that people with autism can remain in their area of residence and be provided with adequate educational and social services. The lack of statistical data on people with a disability hampers an evaluation of whether all persons with any given disability are socially jeopardized and if they are able to access their rights in the field of social care. The Law on social protection established measures and services in the field of

field of social care. The Law on social protection established measures and services in the field of social protection and care through social prevention, de-institutional care, and protection and the right for social support (Trajkovski 2008). The Republic of Macedonia ratified the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol on 29 December 2011 and it is a step forward in improving the quality of life of people with ASD in Macedonia. The diagnosis of autism

forward in improving the quality of life of people with ASD in Macedonia. The diagnosis of autism or other developmental disabilities does not entitle the individuals or their families to benefits – they have to apply for the disability status.

Overview of Current Treatments and Centers In the Republic of Macedonia, there is no systematic approach to early intervention services and programs. There are no service providers for the early intervention of children with ASD. Home-based interventions and other social services available in Western Europe and the United States are relatively limited (Trajkovski 2010). Parents access various kinds of treatments for their children, the most popular are training of social skills, psychomotor

kinds of treatments for their children, the most popular are training of social skills, psychomotor re-education, biomedical treatment, and treatment with medicaments. Sometimes they use unproven treatments which can be dangerous for the health. The use of ABA and TEACCH is at an incidental level. Macedonian pediatricians, psychologists, and rehabilitators lack the skills to conduct such early kinds of treatments. There is no effective law in Republic of Macedonia for early intervention

kinds of treatments. There is no effective law in Republic of Macedonia for early intervention practices (Trajkovski and Jurtoski 2016).

According to the Constitution of the Republic of Macedonia, the concept of freedom and rights is embedded in a citizen-liberal democratic concept, which begins with the principle of citizenship. An essential citizenship freedom and right is personal freedom and the right to acquire education, from the elementary to the university level, which ensures not only personal development and the general development of the individual, but also to the ability to contribute to raising the general

general development of the individual, but also to the ability to contribute to raising the general cultural level of the society in which they live. According to the Law for elementary education, special educational plans and the curriculum are required to nurture and educate pupils with special educational needs. The regional boards of psychology, medicine, and education give recommendations about the conditions which would best serve the child, but the parents are not legally bound to follow

the conditions which would best serve the child, but the parents are not legally bound to follow them, and they can enroll the child into a school of their choice. Also for education in schools, there is no legislation to guide and support parents into choosing the type of school to send their children to. Great numbers of parents send their children to mainstream schools with a 1:1 specialist assistant who is financed by the parents. Having a child with autism spectrum disorders in Macedonia

assistant who is financed by the parents. Having a child with autism spectrum disorders in Macedonia can have a huge financial impact for the family. It appears that policy makers are not interested in this area and have no understanding of the problems families face who take care of children with autism. Authorities have to start with certificated programs for training the professionals. Almost half of parents are not satisfied with early intervention programs in our country. One third of parents

of parents are not satisfied with early intervention programs in our country. One third of parents spend between 250 and 350 euros on early treatment which is a significant amount of their own budget (Trajkovski and Jurtoski 2016). Some of children with ASD stay at their homes out of the system of special or general education. There are no statistics on this issue.

In last 2 years, the Ministry of Labor and Social Policy opened two daily care centers for children with ASD in two towns: Skopje and Shtip. In the last 5 years, three more parental associations were created in Skopje, Shtip, and Bitola, but they have quite low impact in the field due to lack of money and lack of knowledge. The condition of adult people with ASD is very bad. Nobody takes care of them. They do not have access to complementary treatment approaches. Many individuals with ASD who

them. They do not have access to complementary treatment approaches. Many individuals with ASD who do not receive enough support from their families, especially adults, are institutionalized into neuropsychiatric institutions.

Overview of Research Directions The first publication about autism from Macedonia in a scientific impact factor journal appeared in 2004 (Trajkovski et al. 2004). Two scientific and clinical handbooks such as Autism (Trajkovski 2004) and Autism and Pervasive Developmental Disorders (Trajkovski 2011) and some articles are published in Macedonian language and because of that not readily available for international audience (http://www.mssa.org.mk). Also, there are a significant number of

for international audience (http://www.mssa.org.mk). Also, there are a significant number of publications in international peer-reviewed journals, such as those dedicated to the plasma concentration of food-specific antibodies in children with autism (Trajkovski et al. 2008), family analysis of immunoglobulin classes and subclasses in children with autism (Spiroski et al. 2009), and immunogenetics and autism (Trajkovski and Spiroski 2015). Some other research groups have published more socially

and autism (Trajkovski and Spiroski 2015). Some other research groups have published more socially oriented research, such as sexual development, sexual behavior and gender identity of persons with autism (Mladenovska and Trajkovski 2010), employment of people with autism (Stankova and Trajkovski 2010), stress, coping and support among parents of children with autism (Nolcheva and Trajkovski 2015).

Overview of Training Only physicians (psychiatrists and pediatricians) are allowed to diagnose autism officially. A wider range of specialists provide educational and rehabilitation services. On the initiative of the writer of this article, the Institute of Special Education and Rehabilitation at the Faculty of Philosophy introduced the subject of Autism into the curriculum of postgraduate studies in 2004 and the subject of Pervasive Developmental Disorders into the curriculum of doctoral

in 2004 and the subject of Pervasive Developmental Disorders into the curriculum of doctoral studies in 2012 (http://www.fzf.ukim.edu.mk). Twelve graduation theses, six master theses, and two doctoral dissertations were defended with autism as a main topic in last 15 years. Our University “Ss. Cyril and Methodius” trains specialists in special education and rehabilitation and speech pathologists (http://www.ukim.edu.mk).

The Macedonian Scientific Society for Autism provides free lectures about autism and specific approaches, such as PECS, TEACCH, and ReAttach method. The organization also participated in an EU-funded project regarding parent and professional education in conjunction with the Apollonia Foundation from Gevgelija. However, the majority of events are on an ad hoc basis and are inaccessible to most families (ESIPP project, 2015). Though parent education programs exist in parts of Europe, in others

(ESIPP project, 2015). Though parent education programs exist in parts of Europe, in others they are extremely limited or nonexistent. In 2015 the Macedonian Scientific Society for Autism started as a partner in a 3-year project (September 2015-August 2018), funded by the European Commission, in which family members, professionals, and academics from five European countries are working together in a strategic partnership to address this inequity (Belgium, Croatia, Cyprus, Macedonia, and UK). This

strategic partnership to address this inequity (Belgium, Croatia, Cyprus, Macedonia, and UK). This partnership is seeking to develop a core curriculum and ecologically valid parent education materials and methods, provide parent education to families living with autism in three south-eastern European countries where previously it has been unavailable, evaluate impact using quantitative and qualitative methods, share the curriculum and materials with stakeholders, and make recommendations to

methods, share the curriculum and materials with stakeholders, and make recommendations to decision makers (Preece et al. 2016).

Social Policy and Current Controversies Our society is not sensitized to those persons with autism spectrum disorders. They are looked down upon, bullied, and regarded as less valuable than children with typical development. Parents hide their children with autism and do not want to expose them in public. They are ashamed of their own children and are not very eager for them to appear in electronic media. There is a huge social stigma connected to having a person with an ASD diagnosis in the

media. There is a huge social stigma connected to having a person with an ASD diagnosis in the family. The authorities are not interested in helping these families. The governmental bodies do not allocate enough financial resources to this sector. In last 6 years, there have been significant changes in public awareness of autism and in social policy since MSSA started to honor international autism awareness day. Areas of controversy focus on the role of no established treatments (especially ABA

awareness day. Areas of controversy focus on the role of no established treatments (especially ABA and TEACCH), in best approaches to teaching and service delivery, and issues of diagnostic practice. There is a tremendous dearth of work on adults with ASD. The authorities need to begin to see this disorder as treatable and to invest the same energy, money, and efforts into treating autism that we have put into treating cystic fibro-sis, leukemia, childhood cancers, and other chronic medical

we have put into treating cystic fibro-sis, leukemia, childhood cancers, and other chronic medical disorders that affect young children.

See Also * Applied Behavior Analysis (ABA) * ICD 10 Research Diagnostic Guidelines * TEACCH Transition Assessment Profile (TTAP)  Definition Macrocephaly is defined as a measurement of the head circumference which is 2 standard deviations (SDs) larger than the mean for a given age and sex (Bray et al. 1969). It is also known as occipitofrontal circumference (OFC), and it denotes the size of the cranium. It is different from megalencephaly, which is defined as increase in the size of the brain

cranium. It is different from megalencephaly, which is defined as increase in the size of the brain parenchyma exceeding twice the standard deviation (Fletcher 1900). Megalencephaly and macrocephaly may coexist in the same individual (Gooskens et al. 1988). Macrocephaly can be idiopathic, familial, and benign. However, it can be the first indication of autism. In contrast megalencephaly is more often syndromic (Tan et al. 2018). Evidence shows that the head size correlates with the whole brain

syndromic (Tan et al. 2018). Evidence shows that the head size correlates with the whole brain volume and weight (Aylward et al. 2002), but it is not caused by hydrocephalus (Filipek et al. 1992; Piven et al. 1995). The head circumference is a useful index of brain size in children, and it is measured along the most prominent diameter of the occiput and the mid forehead.

Historical Background The presence of macrocephaly, in some children with autism spectrum disorder (ASD), is a phenotypic characteristic described by Leo Kanner in 1943 (Kanner 1943).

Current Knowledge Macrocephaly affects children with ASD in a range from 15% to 35% compared to 3–5% in the general population without autism (Courchesne et al. 2001; Aylward et al. 2002; Dementieva et al. 2005; Sacco et al. 2007; Dissanayake et al. 2006; Sacco et al. 2007, 2010), and it is the most common physical sign seen in ASD (Courchesne et al. 2003). The fact that macrocephaly affects only a subset of children is probably the reason why it is not included as a diagnostic criterion for

a subset of children is probably the reason why it is not included as a diagnostic criterion for autism in the DSM-5 or ICD classifications.

Interestingly macrocephaly is absent at birth among some individuals with autism (Dissanayake et al. 2006; Sacco et al. 2010; Gray et al. 2012), which is the result of a higher growth rate of the brain during the first year of life (Froehlich et al. 2013; Constantino et al. 2010; Courchesne et al. 2003), predating the diagnosis of autism (Dawson et al. 2007). Some studies show that macrocephaly is transitory because after 2 years the growth of the head circumference stops and some children with

transitory because after 2 years the growth of the head circumference stops and some children with autism will no longer meet the criteria parameters for macrocephaly (Aylward et al. 2002; Courchesne et al. 2001). However recent evidence shows that there is a subgroup of boys with autism who have brain enlargement persisting until 5 years of age (Libero et al. 2016).

Several studies have proven macrocephaly is familial and heritable. First-degree relatives of children with macrocephaly have larger head sizes compared to first-degree relatives of individuals without autism (Sacco et al. 2007, 2010; Constantino et al. 2010). Interestingly, macrocephaly in children with autism is apparently not present in all regions of the world such as Sweden, Israel, and Denmark (Cederlund et al. 2014; Davidovitch et al. 2011; Aagaard et al. 2018), and studies performed

(Cederlund et al. 2014; Davidovitch et al. 2011; Aagaard et al. 2018), and studies performed with representative samples from the general population have shown the absence of this feature in individuals with autism (Barnard-Brak et al. 2011; Sacco et al. 2015). Moreover, differences of fetal head growth between the Netherlands and Australia in a recent study show that the Dutch group had a lower initial prenatal head circumference associated with later autistic traits but not the Australian

initial prenatal head circumference associated with later autistic traits but not the Australian group, suggesting a role for environmental factors (Blanken et al. 2018).

Some recognized triggers affecting the fetal brain growth are the maternal thyroid dysfunction and vitamin D deficiency, which could also lead to autism-like symptoms (Whitehouse et al. 2013; Korevaar et al. 2016; Vinkhuyzen et al. 2018). In the same lines, a recent study showed that valproic acid-exposed children during the first trimester of pregnancy compared to the unexposed children had a large cephalic index. The large cephalic index was present in valproic acid-exposed children both with

cephalic index. The large cephalic index was present in valproic acid-exposed children both with and without ASD (Stadelmaier et al. 2017).

The association between macrocephaly and autism severity has been studied with mixed results. Lainhart et al. (1997) demonstrated a small negative correlation between macrocephaly and core symptoms measured through Autism Diagnostic Interview-Revised (ADI-R) but found no association between macrocephaly and head circumference percentile with nonverbal IQ, verbal status, seizure disorder, neurological soft signs, or other minor physical anomalies in individuals with autism. Fidler et al. (2000)

soft signs, or other minor physical anomalies in individuals with autism. Fidler et al. (2000) found that macrocephaly was associated with higher scores on the stereotyped behavior domain of the ADI-R. Later on, Lainhart et al. (2006) show an association between social deficits measured through ADI-R and delayed language and macrocephaly in a large collaborative study. Davis et al. (2013) reported an association between higher head circumference and social deficits measured through ADI-R in

an association between higher head circumference and social deficits measured through ADI-R in individuals classified as simplex but not in individuals classified as multiplex. In this study a head overgrowth was identified in 90% of children with autism from both simplex and multiplex families with a nonverbal IQ < 70 and a nonverbal IQ > 100, respectively, suggesting the importance to include the type of family as a variable with an interaction effect (Davis et al. 2013). In contrast, a recent

type of family as a variable with an interaction effect (Davis et al. 2013). In contrast, a recent study by Webb et al. (2007) found no association between head circumference and signs of language or social regression in children with autism despite using the same definition from the Autism Diagnostic Interview-Revised.

There are less studies between the association of macrocephaly in children with ASD and psychiatric comorbidity. Miles et al. (2005) reported that families of probands with autism and macrocephaly had a significantly lower likelihood of having a family history of ADHD compared with the normocephalic group. In the same lines, Aagaard et al. (2018) through a register-based cohort study of all Danish singletons found that macrocephaly was associated with a decreased risk of ADHD (HR 0.90, 95% CI

singletons found that macrocephaly was associated with a decreased risk of ADHD (HR 0.90, 95% CI 0.82, 0.99), but neither microcephaly nor macrocephaly was associated with ASD (HR 1.06; 95% CI 0.94, 1.19, and 1.03; 95% CI 0.90, 1.19). In a clinical setting, Albores-Gallo et al. (2017) demonstrated that 20% of Mexican children with autism had macrocephaly. The frequency of psychiatric comorbidity was very similar in the groups with macrocephaly (78.4%) and without macrocephaly (79%). The most

was very similar in the groups with macrocephaly (78.4%) and without macrocephaly (79%). The most associated comorbidity in the group with autism and macrocephaly was attention deficit hyperactivity disorder (ADHD) with 46%, followed by specific phobia with 16% and separation anxiety with 6.4%.

Future Directions Macrocephaly should be more studied because evidence shows that stratifying by head circumference increases the power to detect differences in genetic studies as suggested by Conciatori et al. (2004). More research is necessary with larger sample size and longitudinal studies. Since cephalic growth patterns associated with autism vary in different countries, it is important to investigate some prenatal environmental factors such as diet, use of vitamins and regional

to investigate some prenatal environmental factors such as diet, use of vitamins and regional teratogens, maternal exposure to stress, viral or bacterial infection, and thalidomide and valproic acid use as triggers for cerebral overgrowth (Grabrucker 2013). Since macrocephaly precedes the emergence of symptoms of autism, it would be interesting to focus on risk factors postnatally like fever, viral or bacterial infections, and nutritional deficiencies, which could trigger cephalic overgrowth.

or bacterial infections, and nutritional deficiencies, which could trigger cephalic overgrowth. The inclusion of the cephalic type as a specifier in the diagnostic classifications of DSM or ICD would be important for detecting associations in prospective and retrospective studies of autism.

Definition Macrographia is abnormally large handwriting. It might be seen in patients with cerebellar disease (Haymaker 1956) and basal ganglia dysfunctions such as Huntington disease (Phillips et al. 1994). It has also been observed in a sample of patients with aphasia (Fradis and Leischner 1985). Macrographia has been documented in both children and adults with autism spectrum disorder (Beversdorf et al. 2001; Johnson et al. 2013). In the Johnson et al. study, macrographia was associated

et al. 2001; Johnson et al. 2013). In the Johnson et al. study, macrographia was associated with poor manual dexterity. Overall, these findings might reflect abnormalities in the prefrontal/basal ganglia/cerebellar motor network in the ASD population. However, more empirical research is needed to investigate the nature of handwriting abnormalities in autism.

See Also * Micrographia  Definition Magnetic resonance imaging (MRI) is a noninvasive technique by which detailed images of internal anatomy are constructed by measuring the response of atomic nuclei to strong magnetic fields and innocuous radio waves. The hydrogen proton (1H) is the atomic nuclei of choice due to its abundance in water molecules which makes up most of the human body’s mass. During the procedure, protons emit unique signals which depend on their distinct chemical environment.

the procedure, protons emit unique signals which depend on their distinct chemical environment. These signals are then used to construct a series of two-dimensional images, which taken together, can provide valuable information of soft tissue (i.e., organ, muscle, etc.) anatomy in three dimensions. MRI uses no ionizing radiation and is well known for being a painless and harmless procedure. This is evidenced by its widespread use in the clinical and research arenas in populations spanning the

is evidenced by its widespread use in the clinical and research arenas in populations spanning the entire age range from infants to the elderly. In clinical practice, MRI is best known as a diagnostic tool used to differentiate diseased from normal tissue. However, due to its tremendous versatility and ability to provide accurate, detailed information, MRI has widespread applications in contemporary clinical and research practice.

Historical Background Nuclear magnetic resonance (NMR) describes the physical phenomenon on which MRI technology is based. The phenomenon of NMR was actually discovered in the 1940s and set the stage for the development of MRI for medical diagnostic use in the 1970s. NMR signals are created by certain atomic nuclei when excited by radio frequency energy in the presence of a strong magnetic field. In 1946, Edward Purcell and Felix Bloch independently developed methods for determining precise

In 1946, Edward Purcell and Felix Bloch independently developed methods for determining precise nuclear magnetic measurements. This was a monumental achievement, and both were recognized with awards for the Nobel Prize in physics (1952). Spurred by the development of computed tomography in the early 1970s and coupled with advances in the development of new image reconstruction algorithms, chemist Paul Lauterbur and physicist Sir Peter Mansfield created different methods to translate information

Paul Lauterbur and physicist Sir Peter Mansfield created different methods to translate information regarding magnetic spin into cross-sectional images. This seminal work began a rapid progression of continuously improving imaging techniques, and both were jointly awarded the Nobel Prize in physiology or medicine (2003). Many further refinements at various stages have resulted in the acquisition of higher resolution depictions through the improved extraction of signal from tissue over background

higher resolution depictions through the improved extraction of signal from tissue over background noise and improvements in the generation of tissue contrast.

Current Knowledge In this section, a brief review is provided on the physics of MRI as there are now numerous texts covering this topic in detail. MRI exploits the magnetic properties of the atomic constituents of biological matter to construct a visual representation of tissue. Specifically in medical MRI, the signal from the nuclei of hydrogen atoms (1H) is used for image generation since hydrogen constitutes two-thirds of all atoms in the human body. The proton of the hydrogen atom is

hydrogen constitutes two-thirds of all atoms in the human body. The proton of the hydrogen atom is positively charged and possesses spin, an intrinsic property of all elementary particles. In essence, the proton rotates about its axis and is analogous to a spinning top. The proton, which is found in the nucleus of the hydrogen atom, has considerable mass relative to the electron which orbits around the nucleus. As a rotating mass, the proton possesses angular momentum that strives to retain the

the nucleus. As a rotating mass, the proton possesses angular momentum that strives to retain the spatial orientation of its rotational axis. Since the proton is both charged and in constant motion, it additionally has a magnetic moment and can be imagined to behave as a small magnet. What is basically observed in MRI is the motion of the proton’s magnetic axis, which is capable of generating a signal in the MRI scanner’s receiver coil.

When an external force acts on the hydrogen proton and tries to alter the orientation of its rotation axis, the proton begins to wobble or precess around its axis of rotation. At the same time, friction caused by the interaction between the external force and the proton withdraws energy from the proton and slows down its rotation. As a result, the proton’s axis of rotation becomes progressively more inclined and if imagined as a spinning top, finally falls over. More specifically, when hydrogen

more inclined and if imagined as a spinning top, finally falls over. More specifically, when hydrogen nuclei are exposed to an external magnetic field, the magnetic moments (or spins) align with the direction of the field and simultaneously undergo precession. The precession of the nuclei occurs at a characteristic speed that is proportional to the strength of the applied magnetic field and is called the Larmor frequency. The Larmor frequency is the rate at which spins wobble when placed in a

the Larmor frequency. The Larmor frequency is the rate at which spins wobble when placed in a magnetic field. The spin system eventually relaxes and settles into a stable state, but the longitudinal magnetization (Mz) builds up in the z-direction because the magnetic vectors representing the individual magnetic moments accumulate. The spins tend to align parallel and antiparallel to the magnetic field, with parallel alignment being slightly more preferred because it is energetically more

field, with parallel alignment being slightly more preferred because it is energetically more favorable. Hence, a slightly larger fraction of spins aligns parallel to the main magnetic field. This small difference produces the measurable net magnetization Mz and is represented by the net magnetization vector. This energy difference between the two spin orientations depends on the strength of the external magnetic field with Mz increasing as field strength increases.

Furthermore, energy can be introduced into this spin system by applying an electromagnetic wave of the same frequency as the Larmor frequency, a condition known as the resonance state. This wave is generated in a radio transmitter and applied to the object to be imaged using an antenna coil. The result is that the longitudinal magnetization becomes more and more tipped away from the z-axis toward the transverse xy-plane, which is perpendicular to the direction of the main magnetic field. All of

the transverse xy-plane, which is perpendicular to the direction of the main magnetic field. All of the longitudinal magnetization is rotated into the transverse plane by a radio frequency pulse that is both strong enough and applied long enough to tip the magnetization by exactly 90°. This results in Mxy magnetization, which as its name suggests, lies in the xy-plane. Transverse magnetization rotates about the z-axis, which has the effect of an electrical generator and induces an alternating

about the z-axis, which has the effect of an electrical generator and induces an alternating voltage of the same frequency as the Larmor frequency in the MRI scanner’s receiver coil. This is called of the magnetic resonance signal which is collected and processed with sensitive receivers and computers to generate the magnetic resonance image.

The magnetic resonance signal rapidly fades due to two independent processes that reduce transverse magnetization and thus return the spin system to the stable state present prior to excitation. These two processes are spin-lattice interaction which causes T1 relaxation and spin-spin interaction which causes T2 relaxation. T1 is defined as the time required for 63% of the original longitudinal magnetization to be recovered. T2 is defined as the time required for transverse magnetization to

magnetization to be recovered. T2 is defined as the time required for transverse magnetization to decrease to 37% of the original value. T1 typically ranges from 200 to 2,000 ms and T2 commonly ranges from 30 to 500 ms. T2 denotes the process of energy transfer between spins, while T1 refers to the effects of additional field inhomogenities contributing to spins loosing coherence. A key strategy for how differences in T1 and T2 are exploited to generate tissue contrast involves strategic

for how differences in T1 and T2 are exploited to generate tissue contrast involves strategic variation of timing and orientation of repetitive radio frequency pulse delivery.

MRI’s ability to localize signals in the three-dimensional space of the brain is accomplished by using magnetic gradients which are magnetic fields which change gradually along an axis. Encoding of a three-dimensional volume begins by first dividing the tissue mass into slices. Then two distinct magnetic gradients orthogonal to each other are applied, effectively dividing each slice into rows and columns of pixels. By doing this, each pixel possesses unique precessional frequency and direction.

columns of pixels. By doing this, each pixel possesses unique precessional frequency and direction. A special mathematical operation, called Fourier transform, converts pixel data back into three-dimensional voxels, which are then assembled to form an image volume reconstruction of the original three-dimensional tissue mass. Optimal spatial resolution currently approximates 1 mm3 or less.

Proton densities and differential T1 and T2 relaxation effects are properties intrinsic to brain tissues, and subsequently, their measurement forms the basis for the provision of differential tissue image contrast in MRI. Different tissue parameters can be differentially weighted, thus, yielding a variety of image types, each providing a unique range of diagnostic information. Different image modalities are usually identified by numeric values of key pulse sequence parameters set during

modalities are usually identified by numeric values of key pulse sequence parameters set during acquisition. Use of shorter repletion time between pulse sequences during image acquisition interrogates tissues at a moment when their intrinsic T1 differences can be exploited to yield different signal intensity production and hence tissue contrast generation. The resulting image, whose contrast is based on tissue differences in T1, is termed T1-weighted. A repetition time less than 500 ms is

is based on tissue differences in T1, is termed T1-weighted. A repetition time less than 500 ms is considered short; a repetition time greater than 1,500 ms is considered long. Use of repetitive 90° pulses to detect T1-based tissue contrast is called a saturation recovery sequence. Alternatively, inversion recovery involves a sequence that begins with a 180° pulse followed by a 90° pulse. The 180° pulse reverses longitudinal magnetization, and all protons responsible for the net magnetic moment

pulse reverses longitudinal magnetization, and all protons responsible for the net magnetic moment are inverted 180° in the applied longitudinal magnetic field. The signal that is received depends on the time between the 180- and 90° interrogation pulses, which constitutes the repetition time for this particular pulse sequence. On the other hand, a primary strategy for generating T2-weighted images involves use of a pulse sequence termed spin echo. In spin echo, an initial 90° pulse generates

involves use of a pulse sequence termed spin echo. In spin echo, an initial 90° pulse generates transverse magnetization vector component. When 90° pulse is terminated, dephasing follows under the influence of T2. When 180° pulse is administered, the direction of dephasing protons is reversed. More slowly, precessing protons are now ahead of faster ones. Eventually, protons with faster precession fre-quencies catch up, culminating in proton precession rephrasing and thus detectable signal

fre-quencies catch up, culminating in proton precession rephrasing and thus detectable signal generation. This process is repeated, and protons again dephase, are again refocused by another 180° pulse, and so on. Therefore, it is possible to obtain more than one signal by repeating the spin-echo sequence.

In clinical practice, substances with short T1 producing high signals on T1-weighted imaging include fat, methemoglobin in subacute hemorrhage, and paramagnetic contrast agents. Substances with long T1 producing low signals on T1-weighted imaging include cerebral spinal fluid and tissues in which any process that increases local water has occurred (i.e., inflammation). T1 images are best for visualizing normal anatomy. Tissues with longer T2 generate higher signals on T2-weighted images. Because

normal anatomy. Tissues with longer T2 generate higher signals on T2-weighted images. Because of the greater fluid content of a tissue, the longer the tissue’s T2, the brighter that tissue’s appearance on a T2-weighted image. Thus, T2-weighted images highlight fluid-containing regions, such as sulci and ventricular system. Also in a healthy brain, T2 constitutes the entirety of high intensity signal. Substances with short T2 produce low signals on T2-weighted images. Examples include

signal. Substances with short T2 produce low signals on T2-weighted images. Examples include iron-containing substances. Also, most brain lesions involve associated change in water content, such as cellular injury (infarction) and extracellular inflammatory lesions (mass lesions) which produce vasogenic edema. Because a final common pathway of many brain lesions involves increases in water content of brain, T2-weighted images, which highlight tissue with higher water content, demonstrate brain

of brain, T2-weighted images, which highlight tissue with higher water content, demonstrate brain pathology as higher signal intensities. T2-weighted images are useful for evaluating sulcal widening in cortical atrophic syndromes and for evaluating hydrocephalus.

Future Directions In the decades to come, advances in MRI technology include a widespread transition to higher magnetic field imaging, enhanced MRI coil sophistication incorporating even more channels, ultrashort echo-time imaging, tighter integration of multiple imaging modalities, and advances in molecular MRI agents. Currently, the typically used clinical imaging scanners operate at 1.5 T. While systems operating at even higher field strengths have become more prevalent, they are found mainly

systems operating at even higher field strengths have become more prevalent, they are found mainly at major medical centers. Current clinical interest focuses on transitioning to 3 T scanners; however, it is already evident that much higher field strengths will eventually be used to examine patients (up to 7 T, which so far have only been used in research studies). Available data suggests that magnetic field strengths above 2 T involve no increased risk for patients, but the strongest argument for

field strengths above 2 T involve no increased risk for patients, but the strongest argument for increasing field strength is the expectation that this will significantly boost signal-to-noise ratio. Improved signal-to-noise ratio leads to increased spatial resolution and/or reduced imaging time. An improved spatial resolution permits better anatomical evaluation. Shorter scan time leads to better tolerability and more cost-effective operation (more patients can be examined per unit time).

tolerability and more cost-effective operation (more patients can be examined per unit time). Finally, imaging at 3 T or higher field strengths has the potential to improve more sophisticated applications of MRI such as functional imaging and carbon-13 or hydrogen-1 spectroscopy. For example, it is known that the chemical shift increases in proportion to magnetic field strength and the larger chemical shift is advantageous in spectroscopy because the spectral lines spread farther apart. Thus,

shift is advantageous in spectroscopy because the spectral lines spread farther apart. Thus, this improves spectral resolution and discrimination of the peaks of fat and water, which in turn enables better calibration of the radio frequency pulse for fat suppression, which can significantly diminish the peaks of interest.

Also, increasingly higher numbers of radio frequency channels will become standard, having a significant impact in neurological examinations. Commercial products for simultaneous acquisitions of both positron emission tomography and MRI will become commonplace in many centers where their use will be justified by improved throughput, improved patient compliance, and improved image and diagnostic accuracy. Of key importance in combined modalities, however, is the validation of image quality

accuracy. Of key importance in combined modalities, however, is the validation of image quality acquired by one modality in the presence of the other. For example, the verification that positron emission tomography image quality is not impaired by placing the detector system into the magnetic field and that MRI quality is not degraded by the presence of the positron emission tomography detectors. In addition to multimodal imaging, the future will also bring a wider application of current methods

addition to multimodal imaging, the future will also bring a wider application of current methods into other body areas (such as the use of diffusion tensor imaging in non-neurological examinations). Finally, the development of targeted contrast media is a rapidly expanding area in MRI research and is already being frequently used in animal systems. These contrast agents show areas of abnormality in terms of passive accumulation of agent within the tissue, for example, a normal brain will

in terms of passive accumulation of agent within the tissue, for example, a normal brain will exclude contrast from the parenchyma, but damaged tissue allows passive diffusion of contrast agent through the compromised blood-brain barrier, leading to image enhancement. The future will also bring very highly sensitivity agents that either are targeted to specific disease processes or provide specific information on regional metabolism.

See Also * Diffusion Tensor Magnetic Resonance Imaging * Functional MRI * Magnetic Resonance Spectroscopy  Definition Magnetic resonance spectroscopy (MRS) is a technique similar to magnetic resonance imaging (MRI) that can extract chemical information about biological tissues. MRS is also known as nuclear magnetic resonance (NMR) spectroscopy, though this term tends to be avoided in in vivo work. MRS can be accomplished in most clinical MRI scanners and is similarly safe. However, rather than

MRS can be accomplished in most clinical MRI scanners and is similarly safe. However, rather than providing an image of the tissue as MRI would, MRS provides a “spectrum,” or chemical signature, of the area under examination. From this, metabolic and biochemical disturbances can be identified in a region-specific fashion. MRS has applications across the body; however, one of the most prominent applications of MRS is to examine biochemical disturbances in the brain.

Historical Background For a brief history of NMR, please see “Magnetic Resonance Imaging”. Early work in the 1970s showed that MRS could be used to obtain chemical information from living animal tissue, such as blood cells or muscle tissue (de Graaf 2008). However, it was not until the early 1980s that the brain was examined under 1H MRS in living mammals and humans (Ross and Bluml 2001). These studies paved the way for neurospectroscopic applications, ranging from the evaluation of traumatic

studies paved the way for neurospectroscopic applications, ranging from the evaluation of traumatic brain injuries to predictive markers of Alzheimer’s disease risk to studies of neuropsychiatric disorders such as schizophrenia and autism.

Current Knowledge Utility and Applicability of MRS As MRS can typically be conducted with the same equipment as standard MRI, MRS can be considered a very accessible and well-tolerated radiological imaging modality (for comparisons with other modalities, see Siegel and Albers 2006). As with MRI, MRS uses nonionizing radiofrequency pulses for excitation of nuclei and magnetic field gradients for spatial localization. MRS does require, however, specifically built pulse sequences for acquiring data

localization. MRS does require, however, specifically built pulse sequences for acquiring data and specialized algorithms and frameworks for analysis. These modifications and additions are widely available on most clinical MR machines. However, it is also important to note that MRS encompasses a wide range of both clinical and research endeavors. Many types of specialized sequences exist (e.g., see section “MRS of GABA in Autism,” below) as do specialized protocols (some of which look at other

section “MRS of GABA in Autism,” below) as do specialized protocols (some of which look at other nuclei besides 1H that are MR-detectable, e.g., 31P, 13C). The bulk of this article will discuss applications that are most relevant to studies of autism, primarily in vivo 1H MRS of the human brain.

Differences Between MRI and MRS In standard MRI, pulse sequences are chosen to emphasize specifics regarding the spatial distribution of protons, resulting in an image. Thus, the strongest contributors to an MRI profile are water and fats. By contrast, MRS seeks to optimize the provision of spectral information, specifically isolating metabolites and other biochemicals in an organism. Because different nuclei on a molecule may exist in distinct chemical environments, and because each of these

nuclei on a molecule may exist in distinct chemical environments, and because each of these chemical environments can result in different levels of “shielding” from the external magnetic field of the MRI machine, this results in certain molecules having “chemical signatures” that are different from other molecules (see section “1H MR Spectra in the Human Brain”). However, the concentrations of these chemicals are often very low, and thus the signal from metabolites, e.g., in the brain, is

of these chemicals are often very low, and thus the signal from metabolites, e.g., in the brain, is approximately 10,000 times smaller than that of water. For this reason, additional steps are typically taken both at the time of spectral acquisition and data processing for eliminating dominating signals from water or fats so that other metabolites will be visible (de Graaf 2008; Shic et al. 2010).

1H MR Spectra in the Human Brain The most common form of MRS in use today for studying in vivo brain biochemistry is 1H MRS. This form of MRS uses the same type of head coils as MRI and can typically be conducted as part of a standard clinical imaging examination. A typical MR spectrum is shown below. MR spectra are typically displayed with frequency (chemical shift) on the x-axis, expressed in parts-per-million (PPM). PPM is the frequency difference between a reference chemical (typically

in parts-per-million (PPM). PPM is the frequency difference between a reference chemical (typically tetramethylsilane) and a particular frequency, all divided by the frequency of the MRI machine and multiplied by a million. Since the frequency of the MRI machine scales linearly with its field strength, PPM provides a field-independent axis of chemical shifts for metabolites. The y-axis of MR spectra is the signal intensity, a value that scales with the concentration of a metabolite.

A detailed discussion of the clinical utility and biochemical processes underlying MRS-detectable metabolites is beyond the scope of this article (for more details, please see Ross and Bluml (2001) and Lin et al. (2005)), as are the optimizations necessary for obtaining high-quality spectra (for practical advice and theoretical considerations, see Blüml 2011). Briefly, however, primary metabolites seen in in vivo 1H MRS of the brain include: (1) lipids, typically seen in voxels containing

seen in in vivo 1H MRS of the brain include: (1) lipids, typically seen in voxels containing subcutaneous fats from the skull or in necrotic tissue; (2) lactate, which appears as a doublet at 1.33 PPM, a by-product of anaerobic glycolysis which is naturally occurring at low concentration levels in the cerebrospinal fluid but which can also be seen in hypoxia and stroke; (3) N-acetyl aspartate (NAA), a marker for healthy neurons, axons, and dendrites, which is decreased in events such as hypoxic

a marker for healthy neurons, axons, and dendrites, which is decreased in events such as hypoxic or traumatic brain injury; (4) the glutamine and glutamate complex (Glx), which includes both glutamine and glutamate due to overlapping chemical profiles, is involved in inhibitory and excitatory neurotransmission in the human brain and is disturbed in some neuropsychiatric conditions such as schizophrenia; (5) creatine + phosphocreatine (Cr), energy markers of brain metabolism, which can be

(5) creatine + phosphocreatine (Cr), energy markers of brain metabolism, which can be disturbed in brain trauma and hyperosmolar conditions such as hyponatremia; (6) choline (Cho), a myelin and membrane marker, elevated in certain tumors and in stroke; and (7) myoinositol, a brain osmolyte and a marker for astrocytes found to be elevated in Alzheimer’s disease and diminished in hepatic encephalopathy. Typically, the levels of metabolites are expressed as either a ratio (e.g., the peak height of

Typically, the levels of metabolites are expressed as either a ratio (e.g., the peak height of NAA divided by the peak height of Cr, i.e., NAA/Cr) or as an absolute concentration level (typically enclosed in brackets, e.g., [NAA]). Creatine is often used as a reference signal for studies reporting ratios, given its relative homeostatic stability. However, it is important to note that creatine concentrations can be affected by some pathologies (see Ross and Bluml 2001 for details). Several

concentrations can be affected by some pathologies (see Ross and Bluml 2001 for details). Several methods exist for quantifying absolute concentration levels of metabolites, but the analysis is more complex and often involves assumptions regarding the spectral shape of metabolites, the creation of model solutions for use as a basis set, and the use of brain water as a reference (Christiansen et al. 1993; Kreis et al. 1993; Poullet et al. 2008).

Single-Voxel and Multivoxel Spectroscopy As in MRI, there exist many different protocols for acquiring MRS from the brain. Typical 1H clinical examinations can be broken down into single-voxel techniques and multivoxel techniques. In single-voxel spectroscopy, a small area in the brain is chosen a priori, based on scout images or prior MRI in the same session as the MRS session, and 1H MR spectra acquired from those locations. In multivoxel spectroscopy (also called spectroscopic imaging or

acquired from those locations. In multivoxel spectroscopy (also called spectroscopic imaging or chemical shift imaging), spectra are obtained from a wide area under additional phase encoding, thus providing chemical profiles from multiple locations within a larger spatial volume. The advantages of multivoxel techniques include increased ability to detect atypical neurochemical profiles over a larger space and greater time efficiency of detection over the volume compared to comparable serial

larger space and greater time efficiency of detection over the volume compared to comparable serial single-voxel MRS. The disadvantages of multivoxel techniques are increased complexities in data analysis, increased difficulties in controlling for magnetic field inhomogeneities (due to the larger size of the whole volume), and “voxel bleeding” (i.e., contamination of chemical profiles within one voxel with spatially adjacent voxels) (see de Graaf 2008 for details).

Short- and Long-Echo Spectroscopy The appearance of 1H MR spectra is highly dependent on parameters of the pulse sequence employed. The width of peaks in MRS is partially determined by T2* time, a property of a molecule that includes both T2, the transverse relaxation time of a metabolite, as well as magnetic field inhomogeneity effects. Less mobile molecules, such as lipids, tend to have lower T2 times (and hence lower T2* times), effectively translating into peaks that are broader and

lower T2 times (and hence lower T2* times), effectively translating into peaks that are broader and shorter. The echo time of an MRS pulse sequence (the TE time) will refocus (i.e., help to eliminate) inhomogeneity effects, but not T2 effects, with the resultant effect that longer TEs result in decreased visibility of short T2 time metabolites. This has advantages as well as disadvantages. The disadvantages include the decreased visibility of important metabolites with shorter TEs which become

include the decreased visibility of important metabolites with shorter TEs which become harder to identify at longer TEs and the generally decreased signal-to-noise (SNR) ratio associated with waiting for metabolite signals to decay. The advantages include less complex baselines, i.e., less contamination by “nuisance” molecules which alter the shape underlying the peaks of metabolites of interest. Some contributors to complex baselines include macromolecules, which have very short TEs (Behar et

Some contributors to complex baselines include macromolecules, which have very short TEs (Behar et al. 1994). Typical short-echo times are TE = 30–35 ms, whereas long-echo times range from 135 to 144 ms (lactate, which is a j-coupled resonance, inverts in this range of echo times, making it somewhat easier to detect). Other researchers recommend a midrange TE, e.g., 40–50 ms, as a compromise for relatively flat macromolecular contributions and good SNR (Hetherington et al. 2005).

1H MRS Studies of Autism Currently, MRS studies have painted a broad picture regarding neurochemical differences between ASD groups and controls, and some researchers have argued, based on low levels of specific neural markers, that autism may be characterized by disruption of neuronal integrity in a region-specific or global pattern (Dager et al. 2008a). The earliest examinations with MRS are of children diagnosed with autism at 3–4 years of age (Friedman et al. 2003).

Region-specific abnormalities in autism reported by 1H MRS studies include decreased NAA in the hippocampus-amygdala (Gabis et al. 2008; Mori et al. 2001; Otsuka et al. 1999), transverse temporal gyrus (Hisaoka et al. 2001), and medial temporal lobe (Endo et al. 2007). Several groups have also noted functional relationships between NAA concentrations and measures of social functioning (Endo et al. 2007; Hardan et al. 2008; Kleinhans et al. 2009; Oner et al. 2009). It is important to note,

et al. 2007; Hardan et al. 2008; Kleinhans et al. 2009; Oner et al. 2009). It is important to note, however, that several groups have found negative results in similar areas or with different subject populations (Kleinhans et al. 2009; Oner et al. 2009; Perich-Alsina et al. 2002; Zeegers et al. 2007). Nonetheless, abnormal concentrations of metabolites in the temporal lobe, or relationships between temporal lobe and social functioning, are among the most reported results in 1H MRS as applied to

temporal lobe and social functioning, are among the most reported results in 1H MRS as applied to the study of ASD. 1H MRS work by some researchers has also identified abnormalities in levels of brain metabolites other than NAA, such as Cho, mI, Cr, and Glx, in a region-specific fashion (e.g., DeVito et al. 2007; Gabis et al. 2008; Hashimoto et al. 1997; Kahne et al. 2002; Levitt et al. 2003; Mori et al. 2001; Murphy et al. 2002; Sokol et al. 2002; Vasconcelos et al. 2008), though the results are

al. 2001; Murphy et al. 2002; Sokol et al. 2002; Vasconcelos et al. 2008), though the results are somewhat varied, possibly due to differences in subject populations, acquisition parameters, and experimental protocols.

Some groups have also reported what appears to be globally depressed concentrations of all metabolites in autism, primarily as associated with brain gray matter (DeVito et al. 2007; Friedman et al. 2003, 2006; Kleinhans et al. 2007). Friedman et al. (2006), in a particularly relevant study, include as participants the youngest reported group of children with ASD: 45 children 3–4 years of age. Several of these studies, including Friedman et al., also report longer T2 times in autism. T2, also

of these studies, including Friedman et al., also report longer T2 times in autism. T2, also known as spin-spin relaxation time, reflects compartment differences (i.e., where the chemicals are being measured, e.g., intracellularly or extracellularly) and can be interpreted as an indicator of the mobility of the associated metabolite (Dager et al. 2008a). As noted by Dager et al. (2008b), the increased T2 times observed in children with ASD are not compatible with brain overgrowth models of

increased T2 times observed in children with ASD are not compatible with brain overgrowth models of autism which suggest that incomplete neuronal pruning leads to dense neuronal cell packing, as in this case T2 times would be decreased, expressing decreased cellular mobility.

MRS of GABA in Autism Though standard 1H MRS protocols can paint a rich picture of neurochemical abnormalities in individuals with ASD, some particularly noteworthy metabolites are difficult to detect using these standard approaches. One such metabolite is GABA, the primary inhibitory neurotransmitter of the central nervous system. GABA exists in low concentrations in the brain, relative to the other metabolites outlined in the section above. Furthermore, the spectrum of GABA is overlapped by

other metabolites outlined in the section above. Furthermore, the spectrum of GABA is overlapped by other metabolites, obscuring it from view. Recently, Harada et al. (2010) employed a specialized GABA-editing sequence in order to measure GABA levels in the frontal lobe and lenticular nuclei of adults with autism and matched controls. The authors of that study found that adults with autism showed decreased levels of GABA and GABA levels relative to glutamate in the frontal lobe but not the

decreased levels of GABA and GABA levels relative to glutamate in the frontal lobe but not the lenticular nuclei, suggesting a frontal lobe–specific disturbance in excitatory-inhibitory neurotransmission.

Mitochondrial Dysfunction in Autism One application of MRS has been the study of brain mitochondria dysfunction in ASD. Using optimized proton echo-planar spectroscopic imaging, Corrigan et al. (2011) showed no presence of lactate in a longitudinal sample of children with ASD. Since the presence of elevated lactate levels has been suggested to be associated with mitochondrial dysfunction, the finding of no lactate in the study provided evidence against the belief of widespread mitochondrial

finding of no lactate in the study provided evidence against the belief of widespread mitochondrial dysfunction in ASD and, consequently, the practice of hyperbaric oxygen for the treatment of ASD. This study was followed by a healthy exchange of perspectives by researchers on the Corrigan et al. study and proponents of hyperbaric oxygen treatment (Dager et al. 2011; Rossignol and Frye 2011).

Future Directions Despite some inconsistencies in the literature to date, modern research using 1H MRS is beginning to reveal rich interactions between brain neurochemistry and cognitive, behavioral, and social performance in autism. Technological advances, such as more stable spectrometers, increasing field strength, and more reliable and powerful gradients, all contribute to the increased reliability of MRS investigations. Future work will likely replicate and extend prior findings with

reliability of MRS investigations. Future work will likely replicate and extend prior findings with increasingly specific predictions about the relationships between region-specific neurochemical levels, behavior, and outcome.

The continued application of more advanced MRS techniques, such as GABA and glutamate editing, will deepen our understanding of biochemical abnormalities in autism. As in the example of investigations of mitochondrial dysfunction in ASD, these techniques will augment the tool sets available to researchers for providing evidence against or for new and rising hypotheses about the underlying biological mechanisms of autism. However, given the currently high levels of sophistication necessary to

mechanisms of autism. However, given the currently high levels of sophistication necessary to enact some of these protocols and process the results, concerted efforts will be required to delineate the limits of these protocols and to make the techniques more easily available and accessible for translational applications.

A particularly promising application area for MRS research in autism is the use of MRS in tracking the progression and response of individuals with ASD to pharmacological treatment plans. Such strategies have already proven to be useful in other neuropsychiatric disorders (Mason and Krystal 2006). Another area which has been little explored to date is the use of multinuclear MRS for examining nuclei other than proton (1H), e.g., carbon-13 and phosphorous-31. Multinuclear MRS, especially

nuclei other than proton (1H), e.g., carbon-13 and phosphorous-31. Multinuclear MRS, especially infusion studies of 13C glucose or acetate (e.g., see Bluml et al. 2002), has the potential to provide accurate descriptions of atypical brain metabolism and energetics in autism, potentially identifying points of biochemical vulnerability in a pathway- and individual-specific manner. When combined with genetic studies which may highlight the corresponding bases for these disorders, and the potential

genetic studies which may highlight the corresponding bases for these disorders, and the potential of MRS for monitoring and tracking treatment and disease progression, the role of MRS in the study of autism should only increase in the coming years.

See Also * Magnetic Resonance Imaging  Definition Magnetoencephalography (MEG) is a noninvasive neuroimaging technique that detects extracranial magnetic fields produced by electrical activity in the brain, which occurs spontaneously or in response to external stimuli. The extracranial magnetic fields are sampled by an array of sensors, generally arranged in a helmet, within which the head is contained. These extracranial magnetic fields, which comprise MEG signals, reflect the synchronous

is contained. These extracranial magnetic fields, which comprise MEG signals, reflect the synchronous postsynaptic activity of large populations of pyramidal neurons. Electrical activity associated with synaptic transmission produces magnetic fields orthogonal to the direction of the electric currents. The direction of the magnetic fields is governed by the “right-hand rule”: When the right hand is made into a fist with the thumb pointing upward, the remaining fingers point in the direction of the

made into a fist with the thumb pointing upward, the remaining fingers point in the direction of the flow of magnetic fields.

Recording magnetic fields associated with brain activity relies on specialized technology because the magnetic fields in the brain are extremely weak (on the order of 10fT–1pT, approximately 10 million times smaller than the earth’s magnetic field). As such, the coils that detect the brain’s magnetic fields and the superconducting quantum interference devices (SQUIDs) to which the coils are coupled are maintained at extremely low temperatures. This is accomplished by surrounding the sensors with

are maintained at extremely low temperatures. This is accomplished by surrounding the sensors with liquid helium and encapsulating them within a dewar. In addition, containing the MEG system within a magnetically shielded room reduces competing environmental magnetism. MEG recording takes place while patients or participants are either seated or lying supine, with the head positioned inside of the helmet that contains the MEG sensors. The size of the helmet is optimal for a typical adult head

helmet that contains the MEG sensors. The size of the helmet is optimal for a typical adult head in the vast majority of MEG systems; however, MEG systems designed for infants and small children are currently being developed. Unlike MRI, MEG recording is silent. Patients or participants may be scanned during rest or during a variety of paradigms, from passive sensory processing to active task performance, and the signals recorded can be characterized as spontaneous, evoked, or induced.

task performance, and the signals recorded can be characterized as spontaneous, evoked, or induced. Spontaneous activity is that which is not related to the presentation of a stimulus and thus constitutes background activity. Evoked activity is strictly time-locked to a stimulus, whereas induced activity arises in response to a stimulus but not in a strict time-locked manner.

In order to localize the brain activity recorded at the MEG sensors, the source/s of the activity must be modeled. In so doing, researchers and clinicians are often faced with an inverse problem, that is, the data (in this case, MEG signals recorded outside of the head at the sensors) are used to estimate the model parameters (in this case, the source/s of the MEG signals within the brain). These inverse situations are conceptualized as “problems” because there is no unique solution, and it

inverse situations are conceptualized as “problems” because there is no unique solution, and it can be challenging to identify the best possible solution.

MEG source modeling is typically accomplished by combining the MEG signals with MRI images. During MEG data collection, several coils are affixed to the individual’s head (usually the nasion and left and right periauricular areas) to establish a three-dimensional coordinate system so that his or her MEG data may be coregistered with his or her structural MRI. The most widely utilized method for MEG source localization is the single equivalent current dipole (ECD) method. This method involves

MEG source localization is the single equivalent current dipole (ECD) method. This method involves modeling the pattern of MEG activity at relevant sensors with the assumption that the source of the activity is a focal location in the brain. An alternative approach to the ECD method is beamforming, which uses rastered spatial filtering to identify the neuromagnetic time course of any given point in the brain. Repeating this process for many points in the brain allows researchers and clinicians

in the brain. Repeating this process for many points in the brain allows researchers and clinicians to construct images in which the MEG activity of interest is overlaid on the structural MRI.

MEG is related to EEG as the two techniques capitalize on the same neurophysiological processes. However, there are several key distinguishing features of MEG. First, whereas EEG signals are susceptible to distortion due to the skull and scalp, MEG signals are impervious to these structures, thus yielding better spatial resolution in MEG than EEG. Second, whereas EEG detects both tangential and radial currents associated with neural activity, MEG detects only tangential currents. This means

radial currents associated with neural activity, MEG detects only tangential currents. This means that MEG is primarily sensitive to activity in sulci. Third, whereas EEG relies on a reference electrode/s, which can be problematic if the reference is active, MEG is reference-free.

Historical Background To date, magnetoencephalography has been utilized predominantly for clinical purposes. The most common applications are identifying abnormal patterns of neural activity, locating seizure focus in epilepsy, and preoperative assessment of eloquent cortex in patients with intractable epilepsy or brain tumors. In the latter, MEG findings have been demonstrated to be superior to EEG findings and consistent with (and perhaps eventually supplanting) invasive methods such as

to EEG findings and consistent with (and perhaps eventually supplanting) invasive methods such as electrocorticography (ECoG).

Current Knowledge Although MEG is widely considered the “gold standard” for noninvasive characterization of neuropathology in patients with epilepsy and brain tumors and the technique has demonstrated usefulness in the study of disorders such as Parkinson’s disease and schizophrenia, MEG has not been widely applied to the study of autism spectrum disorders (ASD). The earliest MEG studies of ASD were published in the late 1990s, and the relatively small ASD MEG literature can be divided into

were published in the late 1990s, and the relatively small ASD MEG literature can be divided into the following broadly defined categories: (a) epileptiform abnormalities, (b) mirror neuron system integrity, (c) face pro-cessing, (d) the somatosensory system, and (e) auditory/language processing.

Epileptiform Abnormalities One of the earliest MEG studies of ASD (Lewine et al. 1999) investigated the potential presence of abnormal patterns of neuromagnetic activity during sleep in children with regressive ASD, motivated by the substantial clinical overlap between autism and epilepsy. Results indicated a high prevalence of multifocal epileptiform activity in these children, even in the absence of a diagnosable seizure disorder. Similar epileptiform abnormalities have been subsequently

of a diagnosable seizure disorder. Similar epileptiform abnormalities have been subsequently reported in children with nonregressive forms of ASD (Muñoz-Yunta et al. 2008). Importantly, this line of research has demonstrated that epileptiform activity in ASD is detectable with MEG even in cases where it goes undetected by simultaneously recorded EEG.

Mirror Neuron System Integrity Another small subset of the ASD MEG literature consists of studies examining the integrity of the mirror neuron system. Discovered serendipitously by Rizzolatti and colleagues (Gallese et al. 1996), who observed that neurons in a frontal area in monkeys fired not only when the monkey performed an action itself but also when it observed the experimenter performing a similar action, mirror neurons are purportedly involved in imitation and social cognition.

a similar action, mirror neurons are purportedly involved in imitation and social cognition. Impairments in the mirror neuron system have been implicated in ASD, mostly with the use of EEG and fMRI. Although an early MEG study investigating electrophysiological signatures of biological motion perception in individuals with ASD (Avikainen et al. 1999) failed to identify abnormalities in ~20 Hz oscillatory activity in primary motor cortex, more recent work has identified spatio- and

in ~20 Hz oscillatory activity in primary motor cortex, more recent work has identified spatio- and spectro-temporal abnormalities. Specifically, one finding indicated that although the peak activation latencies between adults with ASD and controls did not differ early in the processing stream (occipital cortex, followed by superior temporal sulcus, followed by inferior parietal lobule), the ASD group showed a significantly delayed response downstream in the inferior frontal lobe (Broca’s area),

showed a significantly delayed response downstream in the inferior frontal lobe (Broca’s area), coupled with reductions in the amount of activity in the inferior frontal lobe as well as primary motor cortex (Nishitani et al. 2004). Results from another study revealed that the typical increase in beta (15–25 Hz) activity that occurs after an individual observes an action (the “postmovement beta rebound”) was reduced in adults with ASD in multiple regions in the mirror neuron system, including

rebound”) was reduced in adults with ASD in multiple regions in the mirror neuron system, including sensorimotor cortex, premotor cortex, and the superior temporal gyrus, as well as in the medial prefrontal cortex (Honaga et al. 2010).

Face Processing Despite an extensive literature reporting face-processing abnormalities in ASD using fMRI, only two studies to date have examined face processing in ASD using MEG. One compared the processing of faces to that of mugs and geometrical patterns in adults with ASD (Bailey et al. 2005). Results indicated that the neuromagnetic response to faces at short latencies (30–60 ms) is abnormal in ASD, and equivalent current dipole estimation revealed abnormal face-processing loci in ASD.

in ASD, and equivalent current dipole estimation revealed abnormal face-processing loci in ASD. The second study examined face processing in children with ASD, specifically with respect to processing of faces with direct versus averted gaze (Kylliainen et al. 2006). Findings demonstrated that at early latencies (up to 100 ms), neuromagnetic activity was similar in the ASD and control groups, save a lack of repetition priming in ASD. However, at longer latencies, group differences were more

save a lack of repetition priming in ASD. However, at longer latencies, group differences were more pronounced, with greater responses in ASD to direct versus averted gaze at 240 ms poststimulus (a pattern inconsistent with that of the control group) and weaker responses at 300 ms poststimulus in ASD compared to controls.

Somatosensory System Only two studies to date have examined the somatosensory system in ASD. Examining young adults with ASD, one study (Coskun et al. 2009a) investigated the variability of evoked responses to tactile stimulation and failed to find abnormalities in the ASD group. The other study examined the organization of somatosensory cortex via somatic maps and found abnormal cortical organization in young adults with ASD. Specifically, the cortical representations of the thumb and lip were

in young adults with ASD. Specifically, the cortical representations of the thumb and lip were further apart in the ASD group compared to the control group (Coskun et al. 2009b).

Auditory/Language Processing The majority of the ASD MEG literature to date capitalizes on the ability of MEG to detect lateralized superior temporal gyrus (STG) activity in order to characterize auditory functioning in ASD, with the goal of elucidating biomarkers associated with language impairment in ASD. A number of studies have investigated auditory evoked responses to simple tones, with the hypothesis that impairments in the processing of simple auditory stimuli early in life would likely

hypothesis that impairments in the processing of simple auditory stimuli early in life would likely have cascading detrimental effects on language development. The evoked response most often examined is the M100, a ~100-ms response elicited in passive listening paradigms that is modulated by stimulus parameters such as frequency. Several studies have shown abnormalities in the M100 response in children with ASD. Among these abnormalities are prolonged M100 latencies (Gage et al. 2003; Gandal et

with ASD. Among these abnormalities are prolonged M100 latencies (Gage et al. 2003; Gandal et al. 2010; Roberts et al. 2010), abnormal hemispheric asymmetry of the M100 (Schmidt et al. 2009), and abnormal modulation of the M100 by tones of different frequencies (Gage et al. 2003).

Another feature of auditory processing in ASD that MEG studies have revealed to be abnormal is the mismatch field (MMF). The MMF occurs approximately 200 ms after an auditory stimulus and is a measure of acoustic change detection obtained by subtracting the evoked response to a frequently presented standard stimulus from the evoked response to an infrequently presented deviant stimulus. The presence of an MMF indicates passive, preattentive discrimination of the standard and deviant stimuli.

of an MMF indicates passive, preattentive discrimination of the standard and deviant stimuli. MEG studies have demonstrated latency delays in the MMF in children (Oram Cardy et al. 2005; Roberts et al. 2011) and adults (Kasai et al. 2005) with ASD as well as reduced amplitude, or even absence, of the MMF in children with ASD (Tecchio et al. 2003). The M100 and MMF abnormalities may provide insight into the language impairments characteristic of ASD in that atypical early acoustic processing may

into the language impairments characteristic of ASD in that atypical early acoustic processing may have cascading downstream effects on the processing of language, which is inherently more complex and involves processing acoustic units presented in rapid temporal succession. Results from an MEG study of auditory processing of pairs of tones support this hypothesis; in children and adolescents with ASD, the majority of those with language impairment failed to show evoked responses to the second

ASD, the majority of those with language impairment failed to show evoked responses to the second of two tones when the two tones were presented in rapid succession (Oram Cardy et al. 2005).

Future Directions A number of novel approaches to the study of neural abnormalities in ASD are emerging in the MEG research community. One such approach is the study of resting-state neuromagnetic activity, which has the potential to shed light on abnormal patterns of neural activity in ASD in the absence of specific sensory processing. In addition, analyses of functional connectivity, or interactions between brain regions, both in the resting state and in sensory and cognitive processing are

between brain regions, both in the resting state and in sensory and cognitive processing are being implemented with increasing frequency. Functional connectivity analyses have the potential to provide insight into neural abnormalities in ASD at the network level. A clear benefit of MEG in this area of research is the ability to examine network interactions at multiple frequencies and with fine-grained temporal resolution.

Other exciting new applications of MEG in ASD research involve multimodal integration of MEG and complementary neuroimaging techniques, including diffusion tensor imaging (DTI) and magnetic resonance spectroscopy (MRS). Multimodal MEG and DTI studies afford the opportunity to investigate associations between electrophysiological measures (e.g., delayed auditory evoked 100-ms responses) and the structural integrity of white matter tracts. Multimodal MEG and MRS studies allow for investigation

structural integrity of white matter tracts. Multimodal MEG and MRS studies allow for investigation into associations between electrophysiological measures and neurotransmitter levels. Two particularly promising targets in ASD research are GABA and glutamate. With the growing number of applications of MEG to ASD research emerges the potential to develop multidimensional classifiers that will help to further elucidate the neuropathology of ASD.

See Also * Electroencephalogram (EEG) * fMRI  * Integration  Synonyms Durability of treatment effects; Sustained treatment benefits; Treatment gain retention

Definition The continued improvement in functioning and/or use of skills gained through an intervention over time. Maintenance of behavior change may be strengthened through procedures such as the occasional use of the intervention methods originally used to promote behavior change, provision of reinforcement for displaying the newly learned behavior, and overlearning (teaching until the learner is fluent at displaying the new behavior). Maintenance of treatment effects is often addressed

is fluent at displaying the new behavior). Maintenance of treatment effects is often addressed alongside generalization of skills to maximize the retention of treatment gains.

See Also * Generalization and Maintenance  * Mood Disorders  * Depressive Disorder  Synonyms Problem behaviors  Definition Maladaptive behavior is defined as behavior that interferes with an individual’s activities of daily living or ability to adjust to and participate in particular settings. Maladaptive behaviors lie along a spectrum from more minor, less impairing behaviors (i.e., nail biting, difficulty separating) to more severely impairing behaviors (i.e., self-injurious or over-sexualized

difficulty separating) to more severely impairing behaviors (i.e., self-injurious or over-sexualized behaviors) that seriously interfere with individuals’ ability to maintain relationships with others, learn, and/or engage in adaptive, age-appropriate activities and settings. Because of their impairing nature, maladaptive behaviors are often the target of interventions. Problem behaviors are often a concern for children with developmental disabilities; maladaptive behaviors commonly associated

a concern for children with developmental disabilities; maladaptive behaviors commonly associated with autism spectrum disorders include self-injurious behaviors (e.g., headbanging), stereotypies, aggression, and temper tantrums. Although maladaptive behavior is related to adaptive behavior, or the personal and social skills necessary for day-to-day functioning, these two domains are distinct both conceptually and functionally. Thus, maladaptive behavior is not simply defined as the absence of

conceptually and functionally. Thus, maladaptive behavior is not simply defined as the absence of adaptive behavior; reciprocally, adaptive behavior is not the absence of maladaptive behavior. Maladaptive behavior is a term that is used most often in the discussion of adaptive behavior. In other contexts, maladaptive behaviors are usually considered under a broader umbrella of social-emotional and behavior problems that are measured with checklists.

See Also * Adaptive Behavior Scales * Maladaptive Behavior * Vineland Adaptive Behavior Scales (VABS)  * Noonan and Ras/MAPK Pathway Syndromes  Definition Mand fluency training, or mand training, is an intervention approach designed to teach individuals with limited communication skills to express their needs and wants. A mand commonly takes the form of a request and is defined as a verbal act that is reinforced by a specified consequence (Skinner 1957).

Historical Background Mand training is based on B. F. Skinner’s (1957) operant conditioning framework for analyzing the functions of verbal behavior. This behavioral approach to language training has been used extensively with individuals with developmental delays and autism, in particular, as part of early behavioral intervention programs. For example, intervention programs developed by Lovaas (2003) and Sundberg and colleagues (Sundberg and Partington 1998) incorporate mand training as a key

and Sundberg and colleagues (Sundberg and Partington 1998) incorporate mand training as a key component for teaching early communication skills.

Rationale or Underlying Theory Within an operant conditioning framework, mands are controlled by a motivative variable, often referred to as an establishing operation (Sundberg and Michael 2001). For example, hunger and the desire for a cookie may lead an individual to say “I want a cookie.” This behavior is then reinforced by the offering of a small piece of a cookie. A mand training approach can be contrasted with a traditional language perspective that emphasizes teaching the individual the

be contrasted with a traditional language perspective that emphasizes teaching the individual the meaning of different words (e.g., learning to say “cookie” when shown a cookie or “ball” when shown a ball; Sundberg and Michael 2001). It has been suggested, however, that some children with autism do not spontaneously request items even if they have demonstrated understanding of the appropriate word for an item and, thus, need to be explicitly taught this skill (Sundberg and Michael 2001).

word for an item and, thus, need to be explicitly taught this skill (Sundberg and Michael 2001). Because of the unique reinforcement provided through the establishing operation, mand training can facilitate children’s willingness to participate in language training, in general (Sundberg and Michael 2001).

Goals and Objectives The ultimate goal of mand training is to increase an individual’s spontaneous requesting behavior so that the individual can make his or her needs and wants known to others. Short-term objectives may include imitating mands and requesting basic items, such as food within sight. Longer-term objectives may include requesting items or activities that are not present in the immediate environment.

Treatment Participants Participants in mand training are individuals, typically young children, with developmental disabilities who have limited expressive language skills and who do not spontaneously make verbal requests to express their needs and wants.

Treatment Procedures Mand training can be used as part of a larger early intervention program focused on developing language, cognitive, self-help, and play skills. For example, the I Want program (Lovaas 2003), which is one component of a large package of intervention techniques for individuals with developmental delays, is designed to teach participants to verbalize their choices when presented with desired and undesired items and to develop spontaneous verbal requesting behavior. The

with desired and undesired items and to develop spontaneous verbal requesting behavior. The developer of the program recommends starting with teaching the participant to request his or her favorite foods, objects, or activities to reinforce the behavior and possibly reduce problem behavior resulting from frustration with not being able to communicate desires (Lovaas). If necessary, the individual would first need to be taught how to imitate several “I want (item)” statements (e.g., I want ball,

would first need to be taught how to imitate several “I want (item)” statements (e.g., I want ball, I want cookie, I want juice). The participant is then presented with the stimulus “What do you want?” and prompted to say “I want juice,” for example. The participant’s response is then reinforced by having access to a small amount of the item (e.g., a sip of juice, 5 s of playtime with the ball). As the participant reaches specified accuracy benchmarks, the prompts are faded and new items are

As the participant reaches specified accuracy benchmarks, the prompts are faded and new items are introduced. Eventually the participant is prompted to request items that are not in sight and then progresses to being reinforced systemically for spontaneous requests that are not prompted. For individuals who are unable to echo sounds or imitate actions, mand training can be done using signs or pictures.

Important issues to include when selecting initial words for mand training include:
*   Choosing words that will be reinforcing to the participant and that the instructor can easily control, have access to, and that can be delivered multiple times
*   Selecting words the participant can imitate or for which the individual has demonstrated understanding

*   Choosing words that are relatively easy for the participant to say *   When using sign language, selecting signs that look like the objects they represent and that the individual can already imitate

*   Choosing words for items that are relevant to the participant’s daily life *   Selecting words for a variety of motivators (e.g., not all foods) *   Avoiding words that sound alike or rhyme *   Avoiding words that may represent something negative for the individual (Sundberg and Partington 1998)

Efficacy Information Mand training is often implemented as part of a broader behavioral intervention program, and its efficacy has not been examined extensively in isolation. However, smaller studies have provided some evidence for the efficacy of mand training in children with autism (e.g., Drash et al. 1999). There is also some evidence that it may be more efficient than discrete trial instruction for facilitating the acquisition of requesting behavior (Jennett et al. 2008). Adding

instruction for facilitating the acquisition of requesting behavior (Jennett et al. 2008). Adding opportunities for rapid imitation of modeled motor behaviors during mand training has been shown to increase the efficacy of mand training, with evidence of increased spontaneous manding 3 months later (Ross and Greer 2003). In general, however, there is limited information from published studies on the long-term generalization of skills taught during mand training.

Outcome Measurement Efficacy research on mand training has utilized various metrics for progress monitoring and outcomes measurement, such as specified trial accuracy criteria (e.g., 9 out of 10 correct responses), percentage of correct responses, percentage of incorrect responses, or the number of spontaneous mands in a given period. Clinical intervention programs that include mand training typically use specific accuracy criteria for determining when an individual is ready to progress to the

use specific accuracy criteria for determining when an individual is ready to progress to the next stage (e.g., from imitating mands to being expected to produce them when prompted).

Qualifications of Treatment Providers Mand training providers are typically professionals or supervised paraprofessionals with formal training in behavioral theory and applied behavioral analysis techniques. In some verbal behavior programs, parents and caregivers are also taught basic mand training techniques to facilitate generalization of the individual’s skills beyond the therapy context.

See Also * Applied Behavior Analysis (ABA) * Communication Interventions * Early Intensive Behavioral Intervention (EIBI) * Educational Interventions * Functional Communication Training * Language Interventions * Mands * Operant Conditioning * Skinnerian Categories of Verbal Behavior * Verbal Behavior Interventions  Synonyms Command; Demand; Request  Definition Mands are verbal acts that are reinforced by a specified consequence (Skinner 1957). This term was introduced by B. F. Skinner and

reinforced by a specified consequence (Skinner 1957). This term was introduced by B. F. Skinner and refers to a specific type of verbal action within an operant conditioning framework designed to analyze the functions of verbal behavior. Mands are considered to be the first type of verbal behavior that individuals typically acquire (Sundberg and Michael 2001). As part of a verbal behavior training intervention, mands commonly take the form of requests for items, information, or removal of aversive

mands commonly take the form of requests for items, information, or removal of aversive stimuli (Sundberg and Michael 2001). For example, if an individual who wants a cookie says “Cookie, please” and is then given a cookie, the individual’s statement (i.e., “Cookie, please”) would be considered a mand.

See Also * Applied Behavior Analysis (ABA) * Mand Fluency Training * Operant Conditioning * Skinnerian Categories of Verbal Behavior * Verbal Behavior Interventions  Synonyms Elated, euphoric and grandiose; Elevated, expansive, or irritable mood; Overly talkative; Racing thoughts, distractibility, and psychomotor agitation

Short Description or Definition The American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) defines a manic episode as “a distinct period during which there is an abnormally and persistently elevated, expansive, or irritable mood” (American Psychiatric Association [APA] 2000, p. 357). Symptoms of mania include a high activity level which may be directed toward a specific goal or may consist of psychomotor agitation, inflated self-esteem, a

be directed toward a specific goal or may consist of psychomotor agitation, inflated self-esteem, a decreased need for sleep, racing thoughts, talkativeness, distractibility, and engaging in pleasure-seeking activities without regard for consequences. Individuals experiencing mania are often noted to have a change in personality, in which they become reckless, boisterous, and engage in high-risk activities. If the individual’s mood is elevated, three of the prior symptoms are required; four if

activities. If the individual’s mood is elevated, three of the prior symptoms are required; four if the mood is irritable. To qualify as a manic episode in DSM-IV-TR, the episode must last at least one week, or any duration if symptoms are severe enough to require hospitalization, and must result in impairment in the ability to function in daily life. Psychotic features, including delusions (false beliefs) or hallucinations, may be present. The manic episode cannot be caused by the effects of

beliefs) or hallucinations, may be present. The manic episode cannot be caused by the effects of drugs of abuse, medications, exposure to a toxic substance, or a general medical condition (APA 2000).

Categorization A manic episode is one of the essential components of bipolar I disorder, which historically has been referred to as manic-depressive disorder. Although bipolar I disorder usually also includes episodes of depression, it is the occurrence of the manic episode that is the defining feature. A hypomanic episode is a less severe form of mania, which is not severe enough to cause substantial impairment in functioning in daily life, does not necessitate hospitalization, and there are

impairment in functioning in daily life, does not necessitate hospitalization, and there are no psychotic symptoms. Bipolar II disorder is characterized as a mood disorder in which hypomania, as opposed to mania, is present (APA 2000).

Epidemiology The lifetime prevalence of bipolar I disorder in the community is estimated at 3.9% (Perlis et al. 2004). There is less diagnostic clarity when the mood symptoms have their initial symptoms presenting in childhood, as many other disorders have overlapping symptoms. Twenty is the mean age of onset for a first manic episode, but retrospective studies suggest that about 60% of adults with bipolar disorder demonstrated some mood symptoms in childhood or adolescence. There has been a

with bipolar disorder demonstrated some mood symptoms in childhood or adolescence. There has been a trend over time for the age of the first onset of symptoms to occur earlier in life. For adolescents who have suffered from recurrent major depression, about 10–15% will experience a manic episode and thus develop bipolar I disorder (Boris et al. 2007). The lifetime prevalence of bipolar I disorder in the community is estimated at 3.9% (Perlis et al. 2004). There is less diagnostic clarity when

in the community is estimated at 3.9% (Perlis et al. 2004). There is less diagnostic clarity when the mood symptoms have their initial symptoms presenting in childhood, as many other disorders have overlapping symptoms. Twenty is the mean age of onset for a first manic episode, but retrospective studies suggest that about 60% of adults with bipolar disorder demonstrated some mood symptoms in childhood or adolescence. There has been a trend over time for the age of the first onset of symptoms to

or adolescence. There has been a trend over time for the age of the first onset of symptoms to occur earlier in life. For adolescents who have suffered from recurrent major depression, about 10–15% will experience a manic episode and thus develop bipolar I disorder (Boris et al. 2007). Men and women suffer from bipolar I disorder in about equal numbers. However, women more commonly have a major depressive episode first and suffer from more depressive episodes than manic episodes, whereas men most

episode first and suffer from more depressive episodes than manic episodes, whereas men most often experience their first episode as mania and have more equal numbers of manic and depressive episodes. Manic episodes frequently occur after a stressful life event. In about 2/3 of cases, a manic episode immediately follows or precedes an episode of major depression. Most individuals have periods of more normal mood states between episodes of either mania or depression. However, about one-quarter of

normal mood states between episodes of either mania or depression. However, about one-quarter of individuals with bipolar I disorder more persistently display a labile (fluctuating) or irritable mood (APA 2000). In individuals over the age of 13 who are diagnosed with autism, approximately 3% suffer from manic episodes (Howlin 2005).

Natural History, Prognostic Factors, and Outcomes Mania, associated with bipolar disorder is a recurrent illness. In general, the earlier the age of onset of the disorder (either depressive or manic symptoms), the more recurrent and chronic the course of illness. Recovery from the first manic episode is very high (over 70%), but a similar number (up to 80%) will experience recurrence of the disorder within 2–5 years. Early-onset bipolar disorder also has a high rate of persistent lower level

within 2–5 years. Early-onset bipolar disorder also has a high rate of persistent lower level mood symptoms. Child and adolescent onset of the disorder is often characterized by more rapid fluctuations in mood than when the disorder is not evidenced until adulthood. Poor prognostic factors for manic episodes are early age of onset, long duration of symptoms, exposure to trauma and negative life events, low socioeconomic status, mixed or rapid cycling episodes, psychotic symptoms, and

life events, low socioeconomic status, mixed or rapid cycling episodes, psychotic symptoms, and co-occurring psychiatric disorders. Suicidal ideation and attempts occur most often when an individual is depressed or using substances. For individuals with bipolar I disorder, the completed suicide rate is estimated at 10–15% (Geller et al. 2004).

Clinical Expression and Pathophysiology Elevated mood is the cardinal symptoms of mania. Individuals who experience mania often feel so elated and omnipotent that they do not recognize that they are ill in any way. It is those around them that notice the change in behavior. The manic individual often demonstrates poor judgment, may change personal appearance to a flamboyant style that is out of character, and may exhibit high-risk behaviors, such as sexual promiscuity, substance use, or

of character, and may exhibit high-risk behaviors, such as sexual promiscuity, substance use, or spending large sums of money. For youth presenting with mania, increased energy, distractibility, and pressured speech are the most common symptoms, while hypersexuality has been found to be the least frequent (Boris et al. 2007). Very severe mania often includes psychotic symptoms. More than half of manic individuals experience delusions, usually of grandeur (the false belief that one is famous,

manic individuals experience delusions, usually of grandeur (the false belief that one is famous, has unusual powers, or is special in some other way). Religious delusions are also common. Hallucinations, usually auditory, occur in about one-fourth of individuals. Some individuals may experience symptoms of mania and major depression that alternate rapidly, with both experienced almost every day. This is referred to as a “mixed episode.” Agitation, insomnia, rapid changes in appetite, psychotic

This is referred to as a “mixed episode.” Agitation, insomnia, rapid changes in appetite, psychotic features, and suicidal thoughts are frequent symptoms for individuals with mixed episode mood disorders (APA 2000). Although there are no specific laboratory tests that are diagnostic of a manic episode, some abnormal test results are frequently found in individuals with mania. These include abnormal polysomnograms (electroencephalograms or EEGs that occur during sleep) and increased cortisol

polysomnograms (electroencephalograms or EEGs that occur during sleep) and increased cortisol secretion. Studies of neurotransmitter metabolites, neuroendocrine function, and pharmacological challenges suggest that there may be abnormalities of many of the central nervous system neurotransmitters: norepinephrine, serotonin, acetylcholine, dopamine, and gamma-aminobutyric acid (GABA). Bipolar disorder has been demonstrated to run in families, according to multiple twin and adoption studies.

disorder has been demonstrated to run in families, according to multiple twin and adoption studies. Having a first-degree relative who has been diagnosed with bipolar disorder confers an increased risk (eight- to tenfold over community samples) of also being diagnosed with the disorder. Symptoms typically occur at an earlier age in children with a close family history of bipolar disorder. The heritability for bipolar disorder has been estimated at over 80% (Boris et al. 2007).

Evaluation and Differential Diagnosis The evaluation for mania includes a patient interview, collateral information from significant others, a medical workup, gathering family history of mood disorder, and the use of assessment scales. Structured and semi-structured interviews (SADS or for children the K-SADS) or a general checklist, such as the Child Behavior Checklist (CBCL), may be helpful diagnostically and for research purposes. For youth, the Young Mania Rating Scale (Young et al. 1978)

and for research purposes. For youth, the Young Mania Rating Scale (Young et al. 1978) is the most widely used. Also for youth, parental report is more effective in identifying mania than youth or teacher reports. The Parent Mood Disorder Questionnaire (MDQ) is a widely used rating scale. Mood time-lines or diaries may help track mood symptoms, and may also identify events that trigger these symptoms and document response to treatment (Nandagopal and DelBello 2011).

Many other disorders have overlapping symp-toms with early-onset bipolar disorder. Attention-deficit/hyperactivity disorder, disruptive behavior disorders and conduct problems, substance abuse disorders, schizophrenia, and pervasive develop-mental disorder with irritability are most common. Medical disorders that may present with manic symptoms include hyperthyroidism, head trauma, brain tumors, or Cushing’s syndrome. Medications, such as corticosteroids, antidepressants, and stimulants, may be

Cushing’s syndrome. Medications, such as corticosteroids, antidepressants, and stimulants, may be accompanied by mood fluctuations or precipitate manic symptoms. In individuals diagnosed with autism spectrum disorders, the most common other psychiatric diagnoses are attention-deficit/hyperactivity disorder, depression, and anxiety disorders, with mania occurring with no more frequency than the rest of the population (Howlin 2005; Matson and Nebel-Schwalm 2007).

Treatment Current treatments for mania aim to control the agitation, impulsivity, aggression, and psychotic symptoms and to help patients regain their pre-illness level of functioning. After the first episode of mania, many individuals demonstrate ongoing milder levels of dysfunction, which may or may not resolve fully. Mania, and thus, bipolar I disorder, is a recurrent disorder, and effective treatment must include acute, continuation, and maintenance phases. Effective treatment includes the

must include acute, continuation, and maintenance phases. Effective treatment includes the use of appropriate medications in the mood stabilizing, antiepileptic, and antipsychotic classes. These medications may be used in monotherapy or combined for enhanced effectiveness. Psychosocial interventions, including education about the disease, case management and coordination of services, family therapy, group therapy, and individual supportive and evidence-based treatments are also essential to

group therapy, and individual supportive and evidence-based treatments are also essential to optimize prognosis. Table 2 highlights the components of effective treatment.

| Component | Description | |---|---| | Chief complaint | From patient, family, significant others, referral source | | Context | In what context does mania occur? | | Multiple informants and collateral history | History of symptoms from family, significant others, referral source, primary care physician, etc. (with patient consent or from legal guardian if patient is a minor) |
| Timeline of mood symptoms | Frequency, intensity, number, and duration (FIND) of mood episodes |

| Timeline of mood symptoms | Frequency, intensity, number, and duration (FIND) of mood episodes |
| Developmental, social, and family history | Developmental milestones, educational history, level of functioning, social relationships, medical history, and family history of psychiatric disorders |

| Patient interview/ mental status examination | Developmentally appropriate interview. Inquire about substance use, high-risk behaviors, suicidality and homicidal-ity, legal problems, trauma history, sleep, and energy level. Assess for psychotic symptoms |

| Medical evaluation | Routine physical examination; further medical evaluation as indicated: illicit substances (toxicology screen); toxic (lead or toxin levels); autoimmune diseases (screen for lupus, and others); neurological (EEG for epilepsy; brain imaging for multiple sclerosis, etc.); metabolic/infections (thyroid levels, liver function tests, complete blood count, etc.); other diseases (e.g., Cushing’s disease by cortisol level) |

| Rating scales | SADS, K-SADS, Young Mania Rating Scale, Child Behavior Checklist (CBCL), Parent Mood Disorder Questionnaire (MDQ) |

| Treatment: pharmacotherapy | Treatment: psychosocial | |---|---| | Lithium: Most evidence base for effectiveness in adults and adolescents. Used as monotherapy or in combination with an antipsychotic or anticonvulsant medication | Environmental: Safe and less stimulating environment, sleep hygiene, and routine. For severe mania, this may include psychiatric hospitalization |

| Anticonvulsant medications: valproate, carbamazepine, lamotrigine, oxcarbazepine, topiramate: The most evidence for effectiveness in adults and adolescents are with valproate, carbamazepine, and lamotrigine. Used as monotherapy or in combination with lithium or an antipsychotic | Psychoeducation and support: Active listening; restoration of hope; case management (collaborate with school, job, community resources, family regarding needed services); education about causes, symptoms, treatment,

resources, family regarding needed services); education about causes, symptoms, treatment, and prognosis |

| Atypical antipsychotic medications: olanzapine, risperidone, quetiapine, aripiprazole, clozapine, ziprasidone: May be used as monotherapy but are often used to target symptoms of psychosis or for more rapid treatment response in conjunction with lithium or an anticonvulsant medication | Therapeutic interventions: Day treatment or partial hospitalization program; individual therapy: cognitive-behavioral therapy, dialectic behavioral therapy, interpersonal therapy, supportive therapy; family

therapy, dialectic behavioral therapy, interpersonal therapy, supportive therapy; family therapy; skill-building groups |

See Also * Comorbidity  Synonyms American Sign Language (ASL); Conceptually accurate signed english (CASE); Linguistics of verbal english (LOVE); Manually coded english (MCE); Seeing essential english (SEE I); Sign language; Signed english; Signing exact english (SEE II)

Definition Manual sign is a system of communicating visually and spatially through signs created with the hands. The term “manual sign” does not specify a particular sign system such as American Sign Language (ASL) or manual codes of English such as Seeing Essential English (SEE I), Signing Exact English (SEE II), Linguistics of Verbal English (LOVE), and Conceptually Accurate Signed English (CASE). ASL is the natural language of the deaf community in the United States and much of Canada

(CASE). ASL is the natural language of the deaf community in the United States and much of Canada (Neidel et al. 2000). ASL is a distinct language from spoken English (see entry on “American Sign Language (ASL)”) while manual codes of English are based on spoken English and are an attempt to represent English on the hands. Manual codes of English were created in the 1960s primarily to aid in increasing the literacy skills of deaf and hard-of-hearing children (Schow and Nerbonne 2007). Manual

the literacy skills of deaf and hard-of-hearing children (Schow and Nerbonne 2007). Manual codes of English can be classified as “sign systems” and not “sign languages” because they borrow the semantics and syntax from spoken English. These sign systems follow English word order and use grammatical markers for morphological endings of words. For example, the word “smiling” is signed with two signs SMILE + ing. Additionally, unlike ASL, manual codes of English use signs for function words such as

SMILE + ing. Additionally, unlike ASL, manual codes of English use signs for function words such as “the” and “an.” Typically, when signing is employed in the language intervention for children with autism, the type of signing systems that are used is manual codes of English rather than ASL. The main reason for this may be the hope that using manual sign will lead to verbal communication, an outcome which has been supported by research (Schlosser and Wendt 2008).

See Also * American Sign Language (ASL) * Sign Language  * Manual Sign * Sign Language  * Milestone  * Geodon (Ziprasidone)  * Motivation Assessment Scale  Definition The repeated presentation of a task over a short period of time, with no intertrial interval between presentations. The term was first introduced by Hermann Ebbinghaus, and a detailed study was published in the 1885 book Memory: A Contribution to Experimental Psychology. Since then, researchers have found that distributed

A Contribution to Experimental Psychology. Since then, researchers have found that distributed practice, or spaced practice, in which short periods of learning are interspersed with periods of rest or alternative activities, produces better performance than massed practice in a variety of tasks (Hunter 1929). Studies investigating the influence of task variation on learning suggest that distributed practice produces superior levels of on-task responding and higher levels of child affect in

practice produces superior levels of on-task responding and higher levels of child affect in children with autism (Dunlap 1984). Researchers suggest that interspersing alternative activities with varying difficulty levels serves to increase the child with autism’s motivation to respond to the tasks (Koegel and Egel 1979). Massed practice can also refer to a self-directed behavior change technique in which a person performs an undesired behavior repeatedly, which sometimes decreases the future

in which a person performs an undesired behavior repeatedly, which sometimes decreases the future frequency of the behavior (Cooper et al. 2007).

See Also * Distributed Practice * Learning Styles  * Infantile Spasms/West Syndrome  * Next-Generation Sequencing  Synonyms Mastocyte  Definition Despite the increase prevalence of autism spectrum disorders (ASD), the pathogenesis and therapeutic options for ASD remain poorly understood (Theoharides et al. 2012). In recent years, several reports have suggested the importance of brain inflammation in the pathogenesis of several psychiatric conditions (Theoharides et al. 2016). Among ASD

in the pathogenesis of several psychiatric conditions (Theoharides et al. 2016). Among ASD patients, many develop worsening symptoms after vaccination, infections, toxins, or other environmental exposures suggesting an underlying immune dysregulation (Theoharides et al. 2016). Specifically, increased inflammatory cytokines, autoantibodies, and allergic responses reported in ASD patients suggest mast cells may have a prominent role in the onset and progression of ASD (Theoharides et al. 2016).

mast cells may have a prominent role in the onset and progression of ASD (Theoharides et al. 2016). Patients with increased mast cells have an increased prevalence of ASD and other cognitive deficits, suggesting an underlying mast cell hyperactivity among ASD patients (Theoharides 2013).

Mast cells are bone marrow-derived cells that modulate the innate immune response and contribute several chronic inflammatory and renal diseases (Balakumar et al. 2009; Holdsworth and Summers 2008; Wasse et al. 2012). Within the central nervous system, mast cells are concentrated in the diencephalon, which modulates several emotional and behavior responses (Theoharides et al. 2016). In recent years, mast cell interactions with microglial have been implicated in the pathogenesis of ASD and other

mast cell interactions with microglial have been implicated in the pathogenesis of ASD and other neuroinflammatory and psychiatric disorders (Theoharides et al. 2016). Specifically, environmental and psychological stresses during prenatal development may stimulate the release of potent neuropeptides, neurotensin, and corticotropin-releasing factor and stimulate mast cells to increase vascular permeability and disrupt the blood-brain barrier in ASD patients (Theoharides et al. 2016). With the lack

and disrupt the blood-brain barrier in ASD patients (Theoharides et al. 2016). With the lack of effective treatments for ASD, pharmacological treatments targeting mast cell-microglial interactions may provide a new treatment options for ASD patients and their caregivers (Tsilioni et al. 2015).

See Also * Allergies * Leaky Gut Syndrome * Intestinal Permeability Studies  * Mast Cells and Autism  Major Areas or Mission Statement The Maternal Child Health Bureau (MCHB), a United States Federal commitment to addressing maternal and child health, was first established in 1912. In 1935, the MCHB was transferred to Title V of the Social Security Act and then converted to a federal block grant administered by the Health Resources and Services Administration (HRSA) in 1981. The mission of the

administered by the Health Resources and Services Administration (HRSA) in 1981. The mission of the MCHB is to provide leadership, in partnership with key stakeholders, to improve the physical and mental health, safety, and well-being of the nation’s women, infants, children, adolescents, and their families, including fathers and children with special health-care needs.

Landmark Contributions HRSA administers a wide range of programs to pregnant women, mothers, infants, children, and their families. MCHB programs serve more than 34 million women, infants, and children each year in the United States. The MCHB supports programs to reduce infant mortality by providing comprehensive prenatal and postnatal care for women, promotes an advocacy community-based group for Healthy Start programs, and is a proponent of preventative care (including rehabilitative

group for Healthy Start programs, and is a proponent of preventative care (including rehabilitative services and immunizations) for children, research and training, genetic services, and newborn screening and treatments.

Major Activities HRSA’s implementation of the Combating Autism Act of 2006 ($48 million) addresses the most urgent issues affecting people with autism and their families. The goal of this act is to enable all infants, children, and adolescents who are at risk for developing or who have autism spectrum disorders and other developmental disabilities to reach their full potential by:
*   Establishing a system of services, including early screening of children for autism spectrum disorders

*   Conducting early, multidisciplinary evaluations to diagnose or rule out autism spectrum disorders
*   Providing evidence-based early interventions when a diagnosis is confirmed  Synonyms Iodothyronine deiodinase (D2T3); Thyrotropin, Thyroid-stimulating hormone (TSH); Thyroxine (T)

Structure The thyroid gland is part of the endocrine system. It regulates the rate of metabolism and impacts growth by its regulation of other tissues through secretion of hormones triiodothyronine (T3) and thyroxine (T4). The substrates these hormones are synthesized from are iodine and tyrosine. The rate that these hormones are produced is regulated by thy-roid-stimulating hormone (TSH) from the anterior pituitary gland. TSH is itself regulated by thyrotropin-releasing hormone (TRH) produced

anterior pituitary gland. TSH is itself regulated by thyrotropin-releasing hormone (TRH) produced by the hypothalamus. The fetus begins to make T3 at 18–20 weeks’ gestation and T4 by 30 weeks. This may be partially protective from maternal hypothyroidism.

Function Thyroid hormones are critical to normal brain development. The thyroid regulates metabolism and growth and impacts both calcium metabolism and catecholamine effects. Typical symptoms of hypothyroidism (low hormone production) postnatally are decreased energy, constipation, weight gain, fatigue, cold intolerance, hair loss, and slowed heart rate. Typical symptoms of hyperthyroidism (increased hormone production) postnatally are mood swings, overactivity, decreased appetite, and

(increased hormone production) postnatally are mood swings, overactivity, decreased appetite, and increased heart rate.

Pathophysiology Among the prenatal conditions that have been associated with autism spectrum disorders is prenatal exposure to maternal hypothyroidism. Although not clearly demonstrated as a cause of autism, this hypothesis has growing support from neuroembryonic research, and some have suggested links between environmental toxins, maternal hypothyroidism, and the autism “epidemic.” Twenty-five years ago, Gillberg et al. (1992) noted that congenital hypothyroidism was associated with autism

years ago, Gillberg et al. (1992) noted that congenital hypothyroidism was associated with autism spectrum disorders, along with intellectual disability and other physical concerns. In 1999, Haddow et al. confirmed that children exposed in utero to maternal hypothyroidism manifesting as high gestational thyrotropin (thyroid-stimulating hormone, or TSH) levels, arising in response to relative low levels of thyroid hormone, resulted in significant neuropsychologic impacts at school age.

low levels of thyroid hormone, resulted in significant neuropsychologic impacts at school age. Developmental abnormalities were present even in children of women whose hypothyroidism was subclinical or partially treated (Bernal 2007).

Thyroid hormone receptors are present in the fetal cortex by 8–9 weeks of gestation and increase tenfold by 18 weeks (Bernal 2007), and brain T3 and iodothyronine deiodinase (D2) activities increase during the second trimester (Kester et al. 2004). D2 is felt to play an important role in brain compensation for variations in ambient thyroid hormone levels. It is well established that thyroid hormone plays a role in brain development during the fetal period, that different parts of the brain are

plays a role in brain development during the fetal period, that different parts of the brain are differentially sensitive to thyroid hormone at any one time during development, and that sensitivity to thyroid hormone is controlled, in part, by local control of hormone production. These observations imply that the consequences of thyroid hormone insufficiency during fetal development differ from those of thyroid hormone insufficiency during postnatal development (Zoeller 2005). However, it has

those of thyroid hormone insufficiency during postnatal development (Zoeller 2005). However, it has also been shown that small fluctuations in maternal thyroid hormone levels can have measurable neurocognitive impacts on the developing fetus. One impact of hypothyroidism shown in animal models is reduced expression of reelin, which regulates neuronal migration (Alvarez-Dolado et al. 1999). Abnormality of reelin expression has been associated with ASDs (Fatemi et al. 2005), and although not

of reelin expression has been associated with ASDs (Fatemi et al. 2005), and although not universally accepted, abnormalities of reelin genes have been associated with ASDs (Serajee et al. 2006; He et al. 2011).

It has been noted that thyroid hormone deficiency before the onset of hearing has negative effects on peripheral and central auditory systems (Knipper et al. 2000). In animal models, maternal hypothyroidism has been shown to result in abnormal cochlear development, in abnormal neurotransmission in the developing auditory brainstem and hippocampus (Friauf et al. 2008) and in cerebrocortical and hippocampal synaptic activity (Taylor et al. 2008). Based on these and other animal studies, it has

hippocampal synaptic activity (Taylor et al. 2008). Based on these and other animal studies, it has been proposed that the rat exposed to mild, transient neonatal hypothyroidism may serve as a model for autism (Sadamatsu et al. 2006). High TSH levels have also been noted to be associated with increased risk of breech presentation in term infants, based on samples of Dutch women followed for TSH elevation or evaluated for breech presentation (Kooistra et al. 2010). Inasmuch as breech

for TSH elevation or evaluated for breech presentation (Kooistra et al. 2010). Inasmuch as breech presentation is one risk factor for ASDs (Bilder et al. 2009), this supports the relationship. The authors note that infants who present in the breech position often have low tone or reasons for less active body movements such as kicking and that suboptimal maternal thyroid function might have a direct motor effect on the fetus. Alternatively, they quote literature (Van der Meulen et al. 2008) that

motor effect on the fetus. Alternatively, they quote literature (Van der Meulen et al. 2008) that suggests that the sensory responses of fetuses in breech position are different from those in cephalic presentation.

Sweeten et al. (2003) replicated the findings of Comi et al. (1999), noting increased frequency of autoimmune disorders, with hypothyroidism being the most common, among parents of children with autism spectrum disorders. They acknowledge that this could be an effect of endocrine abnormality or, alternatively, the result of another immunologic abnormality having a direct effect on brain development. A meta-analysis by Wu et al. (2015) and supported by Brown et al. (2015) reasserted this

A meta-analysis by Wu et al. (2015) and supported by Brown et al. (2015) reasserted this association based on pooled data, with an increased risk overall and greater risk specifically with maternal hypothyroidism. An extensive review of the hypothyroidism/ASD association by Román (2007) draws an association between maternal hypothyroidism and neuropathologic features found in individuals with ASDs, including abnormalities in the cortex and hippocampus, “consistent with abnormal neuronal

ASDs, including abnormalities in the cortex and hippocampus, “consistent with abnormal neuronal migration and alterations in the number, survival, and orientation of neurons up to the time of olivary cell migration. . .before the end of the third month” of gestation. He notes that, in humans, the fetal thyroid forms about mid-gestation and that maternal dietary iodine deficiency and associated hypothyroidism prior to the third trimester of pregnancy can result in endemic cretinism. Multiple

hypothyroidism prior to the third trimester of pregnancy can result in endemic cretinism. Multiple possible causes for both transient and long-term maternal hypothyroidism are proposed, including dietary iodine deficiency, exposure to food-based antithyroid substances (particularly soy products and other foods with high levels of isoflavonoids), and other environmental antithyroid substances (herbicides, PCBs, mercury, and coal derivatives).

In follow-up to earlier studies, Román et al. (2013) evaluated 4039 mother-child pairs to determine if there was a correlation between maternal hypothyroxinemia before 18 weeks of gestation and autism risk. A “probable autistic child” was defined based on a score >98th percentile on the Pervasive Developmental Problems subscale of the Child Behavior Checklist in conjunction with a score in the top 5% on an 18-item short-form version of the Social Responsiveness Scale, administered at about age

5% on an 18-item short-form version of the Social Responsiveness Scale, administered at about age 6 years. Eighty children were defined as being a probable autistic child; the adjusted odds ratio of being a probable autistic child increased 3.9 times when the mother had severe hypothyroxinemia in early gestation, but there was no relation between mild hypothyroidism in the mother and autism in the child. Specific ASD diagnosis was not performed, so a significant limitation in this study is the

the child. Specific ASD diagnosis was not performed, so a significant limitation in this study is the specificity of parent report of problems. Andersen et al. (2014) reported a retrospective population based cohort study of over 30,000 children born to mothers with thyroid disease that suggested an association between ASD (based on medical record review) and hypothyroidism diagnosed in the mother after birth, suggesting that antibody and TSH exposure prenatally could be a factor.

Colborn (2004) has also been outspoken in drawing an association between endocrine-disrupting synthetic chemicals and neurodevelopmental disorders such as ADHD and autism spectrum disorders. Some environmental chemicals, e.g., perchlorate, which has sometimes contaminated water supplies, directly interfere with iodine uptake into the thyroid gland. Other chemicals interfere with thyroid hormone signaling; polychlorinated biphenyls (PCBs) have this effect. Bisphenol A (BPA), involved in the

signaling; polychlorinated biphenyls (PCBs) have this effect. Bisphenol A (BPA), involved in the manufacture of plastics, also blocks thyroid action on glial cells. Blazewicz et al. (2016) found lower urinary iodine levels in boys with ASDs, compared to controls, although thyroid hormone levels and thyroid volumes were comparable, with a correlation between clinical ASD severity and lower urinary iodine levels. Hamza et al. (2013) reported similar findings in both children with ASD and their

iodine levels. Hamza et al. (2013) reported similar findings in both children with ASD and their mothers, also noting lower reported intake of iodized salt. Whether these differences were cause or effect of ASD was unclear. As Zoeller (2005) notes, “a causal relation between (environmental) contaminants, thyroid hormone signaling, and cognitive development will be difficult to obtain given the fact that even small and transient thyroid hormone insufficiency may be detrimental.” If screening of

that even small and transient thyroid hormone insufficiency may be detrimental.” If screening of pregnant women for elevated TSH levels and thyroid supplementation when indicated become routine, epidemiologic studies of autism in the children of these women will be informative. Meanwhile, there is not yet clear evidence to associate prenatal exposure to maternal hypothyroidism with autism spectrum disorders, nor are there clear links from environmental toxins to maternal hypothyroidism to autism

disorders, nor are there clear links from environmental toxins to maternal hypothyroidism to autism spectrum disorders, but the hypotheses presented are provocative and speak to the need for well-controlled study.

See Also * Medical Evaluation in Autism  Definition Obesity is a nutritional and metabolic life-course condition with excessive accumulation of adipose tissue that affects health adversely. Body mass index (BMI) calculated as weight in kilograms divided by height in meters squared was used for the definition of obesity. By this measure, obesity is defined as a BMI ≥ 30 kg/m2 for adults. Furthermore, BMI values were classified in the following categories: underweight <18·5; normal 18.5–24.9;

BMI values were classified in the following categories: underweight <18·5; normal 18.5–24.9; overweight 25–29.9; obese class I 30–34.9, obese class II 35–39.9; obese class III ≥ 40 according to the National Institute of Health guidelines on obesity and overweight (NIH 1998). While there is no existing definition of maternal obesity during pregnancy, a maternal prepregnancy BMI is used for the classification.

Historical Background In 2011, Dodds et al. (2011) published their study quantifying the relationship between prenatal, obstetric, and neonatal factors and autism risk. They first reported that prepregnancy weight of 90 kg or more was an independent risk factor for autism. Similarly, Lyall et al. (2011) reported their novel finding that maternal late adolescent BMI ≥ 30 may have a doubling of the risk of ASD in offspring. Since then, a growing number of studies assessing maternal obesity and

risk of ASD in offspring. Since then, a growing number of studies assessing maternal obesity and risk of ASD in offspring have been published (Surén et al. 2014; Reynolds et al. 2014; Gardner et al. 2015; Getz et al. 2016; Connolly et al. 2016; Casas et al. 2017; Andersen et al. 2018) and a weak positive association has been evidenced by meta-analyses that quantitatively summarized the association (Li et al. 2016; Lei et al. 2019).

Previous studies have proposed several plausible mechanisms for explanation of the association observed. Dodds et al. (2011) speculated the role of leptin as leptin levels were high in obese mothers and children with autism were also found to have increased plasma leptin levels, while Lyall et al. (2011) proposed hormonally mediated pathway. But no further finding support these hypothesizes. Later, immunological and genetic factors were raised. Placenta inflammation can induce a systemic fetal

immunological and genetic factors were raised. Placenta inflammation can induce a systemic fetal inflammatory response and the role of cytokines in ASD has been found (van der Burg et al. 2015), this suggested that obesity activated maternal dysimmunity may increase the risk of ASD (Buehler 2011). Several abnormalities of the gene found in obese mothers were also linked to ASD, such as Apo D (Edlow et al. 2014), gene variants (Sebat et al. 2007), and changes in DNA methylation (Ladd-Acosta et al.

et al. 2014), gene variants (Sebat et al. 2007), and changes in DNA methylation (Ladd-Acosta et al. 2014). Therefore, obese mothers are likely to pass on de novo mutations that confer risk for ASD (Pinto et al. 2010).

Current Knowledge Current evidence suggests that maternal obesity slightly increases the risk of ASD in offspring. However, confounding effects should not be ignored. For example, diabetes mellitus, including both gestational and preexisting diabetes, are often accompanied by obesity. Diabetes have also been evidenced to be a risk factor for ASD (Xu et al. 2014). Meanwhile, genetic susceptibility and other unknown risk factors also exist. Therefore, adjustment of potential confounding factors

and other unknown risk factors also exist. Therefore, adjustment of potential confounding factors is important for implication of maternal obesity as an independent risk factor. The association between maternal obesity and ASD risk in offspring may be simultaneously mediated by multiple factors and the explicit mechanism needs further elucidation. Often, maternal obesity is a cause of several other consequences that may play as mediators in the association. Besides, several maternal lifestyle

consequences that may play as mediators in the association. Besides, several maternal lifestyle factors, such as fat intake, that associated with ASD risk may also affect obesity (Lyall et al. 2013). Studies need to be methodologically rigorous and comprehensive so as to minimize the influences of other risk factors.

Future Directions As immunological, genetic, and metabolic factors are involved in the pathogenesis of ASD, hypothesis-guided investigations are encouraged. Of proposed mechanisms, inflammatory factors are the most frequently mentioned and may be predominant. Also, potential mediators are required to be further identified for disentangling maternal obesity as a risk factor for ASD.

See Also * Obstetrical Complications/Risk Factors  Definition Since 2000, both prevalence of identified ASD and the proportion of pregnant women receiving an opioid prescription during pregnancy have increased dramatically. Current evidence suggests a possible association between maternal opioid prescription and ASD identification; yet, few studies of outcomes for children exposed to opiates in utero have had the statistical power or longitudinal duration to assess autism as an outcome. As

in utero have had the statistical power or longitudinal duration to assess autism as an outcome. As opioid use continues to be a research priority in the USA, better data will be available to understand the relationship between prescription and/or illicit opioid use and risk of autism.

Historical Background The prevalence of ASD identified in population-based samples in the USA has increased consistently in the previous two decades (Autism and Developmental Disabilities Monitoring Network Principal Investigators 2007; Baio et al. 2018; Nevison et al. 2018). While some of this increase is attributable to changing diagnostic patterns (Coo et al. 2007; King and Bearman 2009) or increasing accumulation of ASD-like traits across generations (Connolly et al. 2019; Rubenstein and

increasing accumulation of ASD-like traits across generations (Connolly et al. 2019; Rubenstein and Chawla 2018; Virkud et al. 2009), there is still a component of ASD risk attributable to negative environmental exposures perinatally (Lyall et al. 2017). Here, the “environment” refers to factors that are not genetic (although genetic factors may also be affected by the environment) and include a person’s physical environment, social and cultural environment, and lifestyle choices (Rothman et

a person’s physical environment, social and cultural environment, and lifestyle choices (Rothman et al. 2008). Identifying which exposures are linked to ASD adds to the understanding of biological mechanisms that cause ASD and enable development of targeted therapeutics to prevent some impairing aspects, associated features, and co-occurring conditions of ASD.

One such perinatal exposure that has increased in prevalence over the past two decades in the USA is the prescription and use of opioid medication. In a study using Medicaid claims from 2000 to 2007, researchers found that 22% of pregnant women received an opioid prescription at any point during pregnancy (Desai et al. 2014). In a study of women with commercial health plans between 2005 and 2011, researchers found that 14% of women received an opioid prescription (Bateman et al. 2014). Opioids

researchers found that 14% of women received an opioid prescription (Bateman et al. 2014). Opioids are a class of drug that binds to opioid receptors in the brain and body causing a reduced perception of pain. While often prescribed to manage short-term pain, opioids can be highly addictive and are often overprescribed (Lind et al. 2017). Opioid use during pregnancy (whether prescribed or illicit) has been seen to be associated with preterm birth, specific birth defects, poor fetal growth,

has been seen to be associated with preterm birth, specific birth defects, poor fetal growth, neonatal abstinence syndrome, and poor child development at 6 months (Broussard et al. 2011; Lind et al. 2017; Norgaard et al. 2015; Nygaard et al. 2015; Sundelin Wahlsten and Sarman 2013; Yazdy et al. 2015). Much research and public health attention has been paid to the “opioid epidemic” (Gostin et al. 2017); yet, there had been limited opportunity to study longitudinal childhood outcomes for children

yet, there had been limited opportunity to study longitudinal childhood outcomes for children exposed to opioids in utero (Reddy et al. 2017). Preliminary studies have assessed ASD as an outcome identified later in childhood in specific samples, but in building large, longitudinal cohorts, evidence can be further clarified, especially among illicit opioid users.

Potential Mechanisms Exposure to opioids in utero may alter fetal development through a few hypothesized mechanisms. One such mechanism is based on opioids being small lipophilic molecules that can cross the placental and blood-brain barrier. Therefore, a fetus is at risk if the mother is exposed (Hudak et al. 2012). When exposed to an opioid, the fetal brain structure and function, specifically synaptic plasticity and neural connectivity, may be altered (Ross et al. 2015). Alteration in

synaptic plasticity and neural connectivity, may be altered (Ross et al. 2015). Alteration in synaptic plasticity has been shown to be associated with development of autistic traits (Bourgeron 2015; Gilbert and Man 2017). Exogenous opioid exposure during pregnancy could alter functioning of opioid receptors which are linked to neurodevelopment (Byrnes and Vassoler 2018; Gonzalez-Nunez et al. 2013; Sahley and Panksepp 1987).

Exposure to opioids may also lead to increased risk for ASD indirectly through increased risk of other pregnancy complications. Women who use opioids during pregnancy are at increased risk of having children born preterm, low birth weight, and being small for gestational age, even after adjusting for confounding factors like socioeconomic status and other health conditions (Brogly et al. 2017; Norgaard et al. 2015; Whiteman et al. 2014). Poor pregnancy outcomes, like preterm birth and size for

et al. 2015; Whiteman et al. 2014). Poor pregnancy outcomes, like preterm birth and size for gestational age, are also independently associated with ASD risk (Lyall et al. 2017). It is possible that any association between opioid exposure and ASD is mediated through one of these sub-optimal pregnancy outcomes.

Additionally, an association may be seen because of confounding. One type of confounding that may result in seeing an association between opioid use and child ASD is confounding by indication. A mother may be prescribed an opioid for a condition that itself is a risk factor for ASD and the association is through the condition rather than the medication (Signorello et al. 2002). For example, a pregnant woman may experience an injury that causes both pain and inflammation, and an opioid may be

pregnant woman may experience an injury that causes both pain and inflammation, and an opioid may be prescribed; however, it is the inflammation that is the risk factor for ASD rather than the opioid prescription (Meldrum et al. 2013). Outside of confounding by indication, many conditions linked to ASD are also linked to opioid use, including anxiety and depression (Rai et al. 2013; Whiteman et al. 2014), and it could be the common condition/exposure that leads to the association rather than the

2014), and it could be the common condition/exposure that leads to the association rather than the opioid exposure.

Current Knowledge Across the literature, there have been few studies to assess developmental outcomes that can only be assessed after the postnatal period (Reddy et al. 2017). While longitudinal birth cohorts of opioid exposed children are being built, case-control studies can offer insight into the association between prescription opioid use during pregnancy and child ASD. Two studies were identified that assessed ASD as an outcome or maternal opioid prescription during pregnancy.

Prescription Opioid During the Pregnancy Period in the Study to Explore Early Development

In a 2019 study, Rubenstein et al. (2019) used data from the Study to Explore Early Development, a multi-site case-control study of development in preschool age children (Schendel et al. 2012). The sample was comprised of children born between 2007 and 2012 from six US states (California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania) who were enrolled after being identified from ASD or other developmental disability service providers or from a random sampling of birth

from ASD or other developmental disability service providers or from a random sampling of birth certificates. All children were screened for ASD, and those that screened positive or had past indication of ASD received a full gold-standard evaluation. Mothers answered a series of questionnaires about their environmental exposures during pregnancy, as well as providing their medical records and the child’s birth record. Prescription medication, the date prescribed, and the duration of the

and the child’s birth record. Prescription medication, the date prescribed, and the duration of the prescription were listed on the medical records, and two independent reviewers identified the medication containing opioids.

The researchers examined prescription opioid use from 3 months pre-pregnancy to a day before childbirth, ensuring that medication was not related to childbirth or post-birth recovery. Researchers compared the odds of having an opioid prescription (ever in pregnancy, pre-pregnancy, trimester 1, trimester 2, and trimester 3 as determined by childbirth date and gestational age at childbirth) in the ASD group (N = 1369) to the odds of having an opioid prescription in the population comparison

the ASD group (N = 1369) to the odds of having an opioid prescription in the population comparison group (N = 1577). The researchers additionally evaluated whether odds of opioid prescriptions differed between a group comprised on children with developmental delay (DD) with autism symptoms (N = 476) and the ASD group (children with DD with ASD symptoms and children with ASD, since DD with ASD features were more phenotypically similar to the ASD group than the DD group (Wiggins et al. 2015) and

were more phenotypically similar to the ASD group than the DD group (Wiggins et al. 2015) and to account for a sub-diagnostic autism presentation) compared to the population comparison group. For all analyses, the researchers ran an unadjusted logistic regression and an adjusted model to account for confounding due to maternal education, race/ethnicity, smoking during pregnancy, psychiatric condition during pregnancy, and year of childbirth.

In the sample 7.7% of mothers had an opioid medication prescribed during the pregnancy period. During the preconception period, mothers that were prescribed an opioid had 2.43 times the odds of having a child with ASD compared to mothers without a prescription opioid in the adjusted model (95% confidence interval, 0.99, 6.02), and there was a similar odds ratio for the DD with ASD features + ASD group (adjusted odds ratio: 2.64, 95% CI: 1.10, 6.31). Odds were also elevated for prescriptions in

group (adjusted odds ratio: 2.64, 95% CI: 1.10, 6.31). Odds were also elevated for prescriptions in the third trimester (ASD adjusted odds ratio:1.26, 95% CI: 0.94, 1.68; DD with ASD features+ ASD adjusted odds ratio: 1.30, 95% CI: 0.99, 1.71), but to a lesser extent than during the preconception period. There were no associations between DD without ASD features and opioid prescriptions.

Association Between Prescription Opioid Use and Child ASD in an Israeli Health System

In 2018 Janecka and colleagues published a case-control study from the Israeli health system cohort of children born between 1997 and 2007 and followed until 2015. All children with an ASD diagnosis were sampled along with a 19.5% random sample of the original cohort (total N = 96,270, N with ASD = 1405). All medication types were identified through the mother’s health record from 280 days before the childbirth and categorized based on drug type. The researchers ran a series of Cox proportional

the childbirth and categorized based on drug type. The researchers ran a series of Cox proportional hazard models that varied in which covariates were included, but their confounding set consisted of maternal age, paternal age, maternal affective, anxiety, psychotic, neurologic disorders, and a number of maternal diagnoses. The researchers assessed 55 medication groups, two of which (k and ε reception agonists) were opioids. In the sample, 1.94% of children were exposed to opioid m receptor

agonists) were opioids. In the sample, 1.94% of children were exposed to opioid m receptor agonists, 1.91% to k receptor agonists, and 1.91% to ε receptor agonists. In all regression models, the odds ratios were less than 1.0 when comparing odds of ASD in mothers with prescriptions to mothers without prescription; although, only the fully adjusted model assessing k and ε receptor agonists met statistical significance at a 0.05 level (aOR:0.67, 95% CI: 0.45, 0.99).

Limitations The two described studies assess whether maternal opioid medication is associated with child ASD. Both studies had sampling methodology based on identifying ASD leading to relatively low opioid exposure. Studies derived from cohorts of opioid users may increase power and provide further mechanistic detail into child outcomes. Additionally, both studies only assessed prescription opioids. There was no way to validate whether the medication was consumed or whether there was illicit

There was no way to validate whether the medication was consumed or whether there was illicit opioid use. Further, both studies were conditioned on live birth, meaning that if opioid exposure was associated with fetal loss or still birth, we would not see that effect in these data. The Janecka study was conducted in Israel, which is not facing the same opioid epidemic as in the USA, so prescribing practice may not be directly comparable.

Future Directions The opioid epidemic is of key concern to American policy makers and scientific agency. Of high priority are longitudinal cohort studies assessing outcomes for children exposed to opioids in utero. For example, the National Institutes of Health put out a request for applications for the “HEAL Initiative” to create a longitudinal study consortium to assess outcomes of children exposed in utero (National Institues of Health 2018). ASD or autistic traits can be one such outcome

in utero (National Institues of Health 2018). ASD or autistic traits can be one such outcome measurement. Additionally, large national health system data from Nordic countries should be leveraged to examine the association between prescription opioid use and child ASD, with special focus on parsing the effect of indication. Those data would be ideal because of the number of pregnant women that can be assessed and the ability to link the medical data to other data sources to better identify and

be assessed and the ability to link the medical data to other data sources to better identify and control for confounding. Further, these data could be used to examine pregnancy outcomes like preterm birth and low birth weight as mediators between opioid prescription and child ASD. While the relationship between opioid prescription in pregnancy and child ASD is not fully understood, it is important that clinicians avoid prescribing these drugs when it is not necessary and when prescribed for

that clinicians avoid prescribing these drugs when it is not necessary and when prescribed for postoperative pain management, clinicians should be judicious in their prescribing and provide close follow-up, limited quantities, and rapid tapering (Reddy et al. 2017).

See Also * Epidemiology A systematic review of percentage estimates. Journal of Child and Family Studies, 27(6), 1705–1720. https://doi.org/10.1007/s10826-018-1026-3. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/29731598. Rubenstein, E., Young, J. C., Croen, L. A., DiGuiseppi, C., Dowling, N. F., Lee, L. C., . . . Daniels, J. (2019). Brief report: Maternal opioid prescription from preconception through pregnancy and the odds of autism Spectrum disorder and autism features in children.

through pregnancy and the odds of autism Spectrum disorder and autism features in children. Journal of Autism and Developmental Disorders, 49(1), 376–382. https://doi.org/10.1007/s10803-018-3721-8. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30132098 Sahley, T. L., & Panksepp, J. (1987). Brain opioids and autism: An updated analysis of possible linkages. Journal of Autism and Developmental Disorders, 17(2), 201–216. https://doi.org/10.1007/BF01495056. Schendel, D. E., Diguiseppi, C.,

Disorders, 17(2), 201–216. https://doi.org/10.1007/BF01495056. Schendel, D. E., Diguiseppi, C., Croen, L. A., Fallin, M. D., Reed, P. L., Schieve, L. A., . .. Yeargin-Allsopp, M. (2012). The Study to Explore Early Development (SEED): A multisite epidemiologic study of autism by the centers for autism and developmental disabilities research and epidemiology (CADDRE) network. Journal of Autism and Developmental Disorders, 42(10), 2121–2140. https://doi.org/10.1007/s10803-012-1461-8. Retrieved

Developmental Disorders, 42(10), 2121–2140. https://doi.org/10.1007/s10803-012-1461-8. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22350336 Signorello, L. B., McLaughlin, J. K., Lipworth, L., Friis, S., Sørensen, H. T., & Blot, W. J. (2002). Confounding by indication in epidemiologic studies of commonly used analgesics. American Journal of Therapeutics, 9(3), 199–205. Sundelin Wahlsten, V., & Sarman, I. (2013). Neurobehavioural development of preschool-age children born to addicted

V., & Sarman, I. (2013). Neurobehavioural development of preschool-age children born to addicted mothers given opiate maintenance treatment with buprenorphine during pregnancy. Acta Paediatrica, 102(5), 544–549. https://doi.org/10.1111/apa.12210. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23432078. Virkud, Y. V., Todd, R. D., Abbacchi, A. M., Zhang, Y., & Constantino, J. N. (2009). Familial aggregation of quantitative autistic traits in multiplex versus simplex autism. American Journal

aggregation of quantitative autistic traits in multiplex versus simplex autism. American Journal of Medical Genetics. Part B: Neuropsychiatric Genetics, 150B(3), 328–334. https://doi.org/10.1002/ajmg.b.30810. Retrieved from. http://www.ncbi.nlm.nih.gov/pubmed/18618672. Whiteman, V. E., Salemi, J. L., Mogos, M. F., Cain, M. A., Aliyu, M. H., & Salihu, H. M. (2014). Maternal opioid drug use during pregnancy and its impact on perinatal morbidity, mortality, and the costs of medical care in the

pregnancy and its impact on perinatal morbidity, mortality, and the costs of medical care in the United States. Journal of Pregnancy, 2014, 906723. https://doi.org/10.1155/2014/906723. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/25254116. Wiggins, L. D., Reynolds, A., Rice, C. E., Moody, E. J., Bernal, P., Blaskey, L., . . . Levy, S. E. (2015). Using standardized diagnostic instruments to classify children with autism in the study to explore early development. Journal of Autism and

to classify children with autism in the study to explore early development. Journal of Autism and Developmental Disorders, 45(5), 1271–1280. https://doi.org/10.1007/s10803-014-2287-3. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/25348175. Yazdy, M. M., Desai, R. J., & Brogly, S. B. (2015). Prescription opioids in pregnancy and birth outcomes: A review of the literature. J Pediatr Genet, 4(2), 56–70. https://doi.org/10.1055/s-0035-1556740. Retrieved from

literature. J Pediatr Genet, 4(2), 56–70. https://doi.org/10.1055/s-0035-1556740. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/26998394.

Mathematics Disability ▶Dyscalculia  May Institute, Second Edition Cynthia M. Anderson, Margaret Walsh and Stephanie N Child May Institute, Randolph, MA, USA  Definition May Institute is a nonprofit organization. The mission of May Institute is to be the global leader in providing innovative applied behavior analytic services to individuals with autism spectrum disorder and neurobehavioral disorders across the life span. May Institute is staffed by over 2000 employees including board certified

across the life span. May Institute is staffed by over 2000 employees including board certified behavior analysts, special educators, and direct care professionals. Many of our staff have advanced degrees in their field of study.

Historical Background In 1955, Dr. Jacques May and his wife, Marie Anne May, opened a small school for children with autism in Chatham, Massachusetts. They had twin boys diagnosed with autism spectrum disorder (ASD) and dedicated the school to helping their boys, and others with ASD, develop skills needed to live as independently as possible. Today, May Institute serves individuals with ASD, brain injury, and other disabilities across the life span. We have more than 140 locations across the

injury, and other disabilities across the life span. We have more than 140 locations across the country including five schools, consultation services, home-based services, vocational pro- grams, and community-based residences for chil- dren and adults.

May Institute is invested in advancing the field of behavior analysis through high-quality research and services for people with ASD. May Institute also has played a key role in shaping policy to positively affect the lives of people with disabilities. In addition, we are passionate about training the next generation of professionals. In 2005 May Institute established the National Autism Center (NAC), which is charged with dissemination of research and training in evidence-informed prac- tices

which is charged with dissemination of research and training in evidence-informed prac- tices to support individuals with ASD and other disabilities. May Institute and NAC are active centers of research and training and maintain affilia- tions with over 50 universities, hospitals, and human service agencies across the world. Our staff frequently publish in peer-reviewed journals and present research findings at national and inter- national conferences. Staff have federal and private grants and

findings at national and inter- national conferences. Staff have federal and private grants and contracts to support cutting edge research. In the area of training, May Institute pro- vides training opportunities via internships and practicum placements to undergraduate and gradu- ate students. There is a formal internship for doctoral-level psychology students that is approved by the Association of Psychology Post- doctoral and Internship Centers (APPIC).

Rationale or Underlying Theory All clinical services and research are based on the science of behavior analysis. Applied behavior analysis (ABA) is the application of those princi- ples to socially significant problems. There is a significant body of research documenting that interventions based on applied behavior analysis are the most effective approach for addressing the myriad difficulties that may be experienced by people with ASD and neurobehavioral disorders.

Goals and Objectives It is the mission of May Institute to be the global leader in the provision of innovative applied behavior analytic services to individuals with ASD and other neurobehavioral disorders across the life span. Thus, all of the services provided at May Institute use the science of behavior analysis to enhance the lives of the people served. People with ASD have deficits in communication and social interaction. For example, some individuals may struggle to communicate basic

and social interaction. For example, some individuals may struggle to communicate basic wants and needs, whereas others communicate well but have difficulty understanding subtle nonverbal communication. Other individuals might exhibit distressing repetitive behaviors and rituals or engage in stereotypic behavior that interferes with their ability to interact with others. Professionals at May Institute use evidence-based assessments and input from stakeholders to develop goals for each person

use evidence-based assessments and input from stakeholders to develop goals for each person that is served. Indi- vidualized, behavior analytic programs that use systematic methods of teaching are used to help people acquire meaningful and valued skills. Teaching at May Institute is positive and proactive and uses state-of-the-art technology.

Treatment Participants May Institute provides services to children and adults with an ASD and other neurobehavioral disorders. ASD is a spectrum disorder which means that it can present in many different ways. All individuals with autism experience deficits in communication and social interaction and have struggles with restrictive or repetitive patterns of behavior, interests, or activities. However, the way in which these deficits presents can vary greatly. May Institute supports people with

the way in which these deficits presents can vary greatly. May Institute supports people with ASD and neurobehavioral disorders across the life span and at all levels of need. Academic, social behav- ioral, and vocational services are provided to indi- viduals across the spectrum.

Treatment Procedures The treatment procedures used by professionals at May Institute for individuals with an ASD are applied behavior analytic. The goal of all interventions is to increase the quality of life and independence of the individuals we serve. In our consultation services to support young children with a diagnosis of ASD, we work in both center-based programs and family’s homes. We provide behavior analytic interventions designed to increase skills in social communica- tion and

provide behavior analytic interventions designed to increase skills in social communica- tion and interaction, as well as teaching children skills they will need to succeed in school. All interventions are individualized for a specific child and address that child’s specific need. For example, some children have no means of func- tional communication, and intervention thus focuses on helping those children learn to com- municate their wants and needs. For some chil- dren, this involves teaching

children learn to com- municate their wants and needs. For some chil- dren, this involves teaching spoken words; for others, we teach augmentative methods of com- munication, such as using picture icons on a tab- let. Many children with ASD can communicate wants and needs but struggle with other aspects of communication or interaction. For example, a child may have difficulty engaging in reciprocal interaction or sharing interest in something with another person (joint attention). In such cases,

interaction or sharing interest in something with another person (joint attention). In such cases, intervention is directed toward enhancing those skills.

Our school consultation programs are designed to help teachers and other educational profes- sionals develop and enhance skills to support stu- dents with ASD. Activities include workshops and training, classroom-based consultation, and direct work with students and teachers. In addi- tion, May Institute operates “model classrooms” through which we help districts train educators to implement state-of-the-art behavior analytic inter- ventions to support students.

May Institute operates five private schools, four support students with ASD and one supports students with brain injury. Across schools, our students each have an Individualized Education Plan (IEP) specifying goals in education (e.g., reading), acquisition of communication and inter- action (e.g., increasing peer interactions), and addressing any behavioral challenges (e.g., replacing self-injury with more desirable behav- ior). All programing is based on principles of behavior analysis,

with more desirable behav- ior). All programing is based on principles of behavior analysis, including the way academic instruction is provided, how skills are taught, how challenging behavior is addressed, and how vocational skills are taught.

For academic instruction, teachers design individualized education plans based on compre- hensive assessments of students needs and pro- vide academic instruction using evidence-based methods of instruction in both group and indi- vidualized instruction. In addition, May staff uti- lize behavior analytic assessments and intervention strategies to help each student learn to communicate wants and needs, to initiate and carry on conversations, and to interact with peers and adults in a

wants and needs, to initiate and carry on conversations, and to interact with peers and adults in a developmentally appropri- ate manner. A goal of interventions in this area is to teach in such a way as facilitate independence and generalization to the community. Behavioral challenges are addressed in a comprehensive manner that always begins with a functional behavior assessment (FBA) to identify what evokes the behavior (e.g., requests) and what seems to maintain or reinforce the behavior,

what evokes the behavior (e.g., requests) and what seems to maintain or reinforce the behavior, such as avoiding instruction, gaining attention from others, or getting access to some preferred activity or item. Results of the FBA are used to develop an intervention that consists of strategies to (a) reduce the likelihood the behavior will occur in the first place, (b) teach new skills, (c) increase the occurrence of desired behavior, and (d) decrease the likelihood of challenging behavior.

the occurrence of desired behavior, and (d) decrease the likelihood of challenging behavior. Vocational and prevocational skills are also taught across the schools utilizing the principles of behavior analysis. Two of our five schools offer community-based residential ser- vices. Residential staff members utilize behavior analytic interventions to teach skills ranging from self-care (e.g., tooth brushing) to daily liv- ing skills (e.g., meal preparation) with the goal of increase the students’

brushing) to daily liv- ing skills (e.g., meal preparation) with the goal of increase the students’ independence and increase their quality of life. Clinicians and educators place an emphasis on involving family members into the educational and treatment process and systematically plan for generalization of acquired skills across various environments.

Adult services provided at May Institute include day programs, shared-living, and community-based residential programs. The pri- mary goal of adult services is to provide individ- ualized supports that are evidence-based. We serve adults living with ASD, intellectual dis- abilities, and traumatic brain injury at all stages of their adult lives. We provide a wide range of services that include day programs, shared- living, community-based residential programs, and independent living programs.

programs, shared- living, community-based residential programs, and independent living programs. The services provided to adults focus on teaching skills that increase independence in all areas of their lives. Most of the adults we serve have an Individual- ized Support Plan (ISP) that is developed by a team of people who are familiar with the individ- uals’ desires and support needs. The ISP spec- ifies the person’s vision for their life and the goals they want to work on to achieve their

spec- ifies the person’s vision for their life and the goals they want to work on to achieve their vision. It also identifies the kinds of support the individual will need to meet their goals and live in the least restrictive environment possible. Trained support staff help the adults in our care participate meaningfully in their communities, develop social skills needed to form and main- tain relationships, and learn skills that increase their ability to participate fully in daily routines

relationships, and learn skills that increase their ability to participate fully in daily routines throughout their lives.

Efficacy Information Interventions based on the science of behavior analysis have repeatedly been demonstrated to be highly effective in addressing the challenges experienced by people with ASD (e.g., Heyvaert et al. 2014; National Autism Center 2015; Odom et al. 2010; Smith and Iadarola 2015; Wong et al. 2015). For example, both NAC and Wong et al. reviewed peer-reviewed intervention studies for individuals with ASD to identify practices with a strong evidence base. Wong et al. restricted the

individuals with ASD to identify practices with a strong evidence base. Wong et al. restricted the sample to ages birth to 22, whereas NAC exam- ined studies across the life span. Both identified broad categories of practice (e.g., prompting, rein- forcement), and there was significant overlap between the two reviews. All evidence-informed practices were, in the words of Wong et al., “. . .fundamental applied behavior analysis techniques. . .” (p. 1957). At May Institute, all interventions used

applied behavior analysis techniques. . .” (p. 1957). At May Institute, all interventions used fall within the evidence- informed categories identified in the above- referenced reviews.

Outcome Measurement At May Institute, our staff collect data on all identified goals and target behaviors of the indi- viduals we serve. For example, if a treatment goal is increasing functional communication, staff might record the frequency of targeted communi- cative responses (e.g., signing, “apple”). If a goal is increasing reading fluency, staff might measure words read correctly per minute to monitor acqui- sition of reading. When a goal is addressing chal- lenging behavior, staff record

to monitor acqui- sition of reading. When a goal is addressing chal- lenging behavior, staff record the frequency of challenging behavior and also the occurrence of more desired behavior. In addition to recording outcome measures, staff also collect data on treat- ment integrity, to monitor the fidelity with which programs and interventions are implemented as designed. If outcome data suggest an intervention is not producing desired goals and treatment integrity is good, then the intervention

intervention is not producing desired goals and treatment integrity is good, then the intervention would be adjusted to produce desired outcomes. Alterna- tively, if treatment integrity was low, additional training would be provided to help staff imple- ment the intervention as designed.

Qualifications of Treatment Providers All treatment providers at May Institute are appro- priately qualified and credentialed for their given profession and area of expertise. For example, staff include licensed psychologists and licensed behavior analysts as well as certified teachers, licensed or certified speech and language thera- pists, occupational therapists, and social workers.

Mean length of utterance (MLU) is the average number of morphemes per utterance. It is an index of expressive language development used beyond the stage of single words, when a child uses two or more words together in an utterance. It is calculated in 100 spontaneous utterances by counting the number of morphemes in each utter- ance divided by the total number of utterances. MLU is used as a benchmark to assess individual differences and developmental changes in gram- matical development in

to assess individual differences and developmental changes in gram- matical development in children in the early stages of language acquisition. Children with autism fre- quently demonstrate differences in MLU compared to non-autistic developmentally delayed children and typically developing children by producing shorter utterances with fewer grammatical mor- phemes. Recent research has acknowledged the use and utility of using MLU as an index for language development in children with autism

the use and utility of using MLU as an index for language development in children with autism (Condouris et al. 2003; Tager-Flusberg et al. 2009).

The use of MLU as a standard for measuring children’s language development was initially described in 1973 when spontaneous language transcription and morpheme analysis methods were codified and subsequent stages of expressive language development were identified (Brown 1973). Table 1 contains the six stages identified by Brown (1973), the corresponding MLU, and the linguistic characteristics of each stage.

Mean Length of Utterance (MLU), Table 1 Brown’s stages of language development by mean length of utterance
| Stage | MLU | Age | Linguistic characteristics | |-------|-----|-----|--------------------------| | I. | 1.0–2.0 | 12–26 months | Single-word and two-word utterances that express early semantic relationships, such as action-object and action-location |
| II. | 2.0–2.5 | 27–30 months | Emergence of grammatical inflections, such as present progressive tense -ing |

| III. | 2.5–3.0 | 31–34 months | Development of sentence types including declarative, interrogative, negative, imperatives |
| IV. | 3.0–3.75 | 35–40 months | Emergence of sentence coordination using early conjunctions, such as and, because |
| V. | 3.75–4.5 | 41–46 months | Continued development of complex sentences including coordination, complementation, and relativization |

| VI. | 4.5 + | 47+ months | Continued refinement |   In 1998, Andrew Wakefield, a British surgeon, published a case series in the Lancet of eight children with autistic spectrum disorder; all had received the combination measles-mumps-rubella vaccine and all had lymphonodular hyperplasia of the small intestine. This study gave birth to the notion that MMR vaccine caused autism. To avoid autism, Wakefield suggested that the three vac- cines in MMR vaccine should be given separately. The hypothesis

suggested that the three vac- cines in MMR vaccine should be given separately. The hypothesis that MMR caused autism was subsequently rejected by epidemiological studies (see section titled “MMR and Autism”).

Wakefield’s hypothesis that MMR vaccine caused autism was rooted in his studies examining the relationship between wild-type measles virus infections and inflammatory bowel disease. These studies set the stage for his notion that measles virus – either wild-type virus or attenuated virus – could cause intestinal disease. Using a monoclo- nal antibody, Wakefield and coworkers detected measles virus nucleoprotein in biopsy specimens from patients with Crohn’s disease. However, this monoclonal

nucleoprotein in biopsy specimens from patients with Crohn’s disease. However, this monoclonal antibody was subsequently found to detect a host, not measles virus, protein and bound to intestinal tissues obtained from patients with or without inflammatory bowel disease (IBD). Stud- ies detecting measles virus genome by polymer- ase chain reaction also failed to detect measles virus in patients with IBD.

Wakefield’s claim that autism could be avoided by separating the MMR vaccine into its three component parts was also born of studies of wild-type measles virus. Wakefield and coworkers performed a study of children born in England during a 1-week period in 1970 by eval- uating the relationship between the timing of childhood infections and IBD. Wakefield observed an increased risk for IBD in children who were infected with measles and mumps virus within the same year. However, this study was

who were infected with measles and mumps virus within the same year. However, this study was limited in that (1) few patients were studied and (2) histories of infection were obtained 4–10 years after the event raising the question of recall bias.

Wakefield later stated that his claims that wild- type measles virus caused IBD were incorrect.
 Measles-Mumps-Rubella (MMR) Vaccination Paul A. Offit Division of Infectious Diseases, Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

Definition In 1998, Dr. Andrew Wakefield and coworkers at the Royal Free Hospital in London published a paper in The Lancet titled “Ileal-lymphoid- nodular hyperplasia, non-specific colitis, and per- vasive developmental disorder in children.” The paper detailed the stories of eight children: all had recently received the combination measles- mumps-rubella (MMR) vaccine and then devel- oped signs and symptoms of autism spectrum disorder. By endoscopy, these researchers also found evidence for

and symptoms of autism spectrum disorder. By endoscopy, these researchers also found evidence for lymphoid hyperplasia in Peyer’s patches of the small intestine. Wakefield and his coworkers reasoned that the measles vaccine component of MMR was traveling to the intestine, inducing intestinal disease, and allo- wing for entrance of encephalopathic proteins that traveled to the brain and caused autism. Media coverage from this paper caused many parents to withhold MMR vaccine for their chil- dren.

Media coverage from this paper caused many parents to withhold MMR vaccine for their chil- dren. As a consequence, hundreds of children developed measles in England, the United King- dom, and Ireland, and four children died of com- plications from the disease. In the United States, parents of 125,000 children withheld the MMR vaccine accounting, in part, for a measles epi- demic in 2008 that was larger than any in more than a decade.

The academic and public health communities in several countries responded by examining ret- rospectively children who either had or had not received MMR vaccine to determine whether autism was associated with vaccination. The results were clear, consistent, and reproducible. MMR vaccine was not associated with autism. Further, the physiological basis of Wakefield’s contention was refuted when other researchers were unable to identify persistent measles vaccine virus genome in autistic children

researchers were unable to identify persistent measles vaccine virus genome in autistic children more frequently than in non-autistic children. Nor were the encephalopathic proteins posited by Wakefield ever identified.

Measurement Error Haleigh M. Scott1 and Susan M. Havercamp2 1Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL, USA

2Nisonger Center, UCEDD, The Ohio State University, Columbus, OH, USA  Synonyms Bias; Error of measurement; Standard error of measurement  Definition Measurement error is a statistical term that refers to the difference between the obtained value or score and the hypothetical “true” value. Psycho- logical tests rarely, if ever, provide a perfect mea- sure of a construct. The degree of uncertainty or variability surrounding the obtained value is referred to as measurement error. Measurement

or variability surrounding the obtained value is referred to as measurement error. Measurement error can be divided into two parts: random error and systematic error. Random errors are statistical fluctuations (in either direction) in the measured data due to precision limitations of the measure- ment device. Random errors usually result from the experimenter’s inability to take the same mea- surement in exactly the same way. Random error is variation due to a wide variety of uncontrollable and

in exactly the same way. Random error is variation due to a wide variety of uncontrollable and unpredictable factors and cannot be elimi- nated within a study or a test.

Systematic error, also called “bias,” may occur in the sampling stage of an experiment as when the sample obtained differs systematically from the target sample. Systematic error can also occur at the pre-measurement, measurement, or calculation stage of an experiment as when an instrument is not used as the manual pres- cribes or when observer-expectancy or subject- expectancy effects are allowed. Systematic error can include discrepancies in measurement tools, observational bias, or shared

Systematic error can include discrepancies in measurement tools, observational bias, or shared environment effects. Systematic errors apply universally across the sample and are referred to as “bias” in social science research. Though difficult to prevent, sys- tematic error can be eliminated once identified. Bias in sampling, measurement, or calculation can be corrected statistically.

Measurement error is negatively correlated with reliability. According to classical test theory, reliability is the proportion of true score to obtained score. The higher the reliability coeffi- cient of a test, the more confidence can be had in making interpretations about any individual test score. IQ testing, often part of the diagnostic proce- dure for ASD and other developmental disabil- ities, provides a good illustration of measurement error. Measurement error, the discrepancy between the

provides a good illustration of measurement error. Measurement error, the discrepancy between the obtained score and the true score on a test, results from both random and systematic error. If the same person was to take the same IQ test three separate times, they may well receive three different scores. Their scores would cluster around their “true” IQ score. This is the result of random error such as sometimes guessing cor- rectly and sometimes incorrectly. A certain amount of random error is

as sometimes guessing cor- rectly and sometimes incorrectly. A certain amount of random error is unavoidable in mea- suring any construct, including IQ. Test devel- opers have taken care to limit systematic errors that may result from inconsistent administration of the test by carefully describing administration procedures. IQ test developers have also been diligent in minimizing systematic errors that may bias the test according to gender, cultural, racial, and ethnic differences.

Measuring Language Change Through Natural Language Samples Mihaela Barokova Center for Autism Research Excellence, Boston University, Boston, MA, USA  Synonyms Language outcome measures  Definition Assessing changes in expressive language ability by analyzing recordings of speech from typical, everyday situations.

Expressive language is integral to social communication and plays a central role in develop- ment. Its emergence is one of the strongest predic- tors of positive long-term outcomes in ASD (Howlin et al. 2004), which is why it has become the target of many interventions (Kasari et al. 2010). However, widely used methods for characterizing language ability in ASD, like parent questionnaires and standardized tests, are often not fit to detect changes in expressive language resulting from treat-

standardized tests, are often not fit to detect changes in expressive language resulting from treat- ments and interventions. In contrast, natural language samples, which are audio and/or video recordings of spontaneous speech, can be a useful tool for measuring language change in ASD (Barokova and Tager- Flusberg 2018). They can be collected in different contexts (e.g., free play, reading a book, specific activity) by different people (e.g., parent, peer, teacher, researcher) in a variety of

specific activity) by different people (e.g., parent, peer, teacher, researcher) in a variety of settings (e.g., home, school, lab) ensuring the samples are representative of the speaker’s everyday language use. A single sample can be coded at the level of the sounds, words, sentences, or appropriate use in context, thus providing a comprehensive picture of the speaker’s ability. This is especially useful considering language is one of the most heterogeneous characteristics in ASD (Tager-

useful considering language is one of the most heterogeneous characteristics in ASD (Tager- Flusberg et al. 2009). Measures derived from natu- ral language samples (e.g., frequency of utterances, number of different words used) can be sensitive to subtle changes in language ability that could go undetected if parent questionnaires or standardized tests are used instead. Furthermore, other measures derived from the samples, like number of different topics discussed and amount of echolalia, can

derived from the samples, like number of different topics discussed and amount of echolalia, can serve as proxy for restricted interests and repetitive behaviors, thus capturing change in core autism symptoms beyond social communication.

There are no practice effects associated with the elicitation of natural language samples, so they can be collected pre- and post-intervention, and a similar elicitation procedure can be used with individuals from a wide range of age and language ability, who often comprise the partic- ipant pool of ASD intervention and treatment studies.

There are ongoing efforts in the field of ASD and other neurodevelopmental disorders to design stan- dard elicitation protocols for natural language sam- ples (e.g., Berry-Kravis et al. 2013) and determine which measures derived from them have the most sound psychometric properties to detect change in language ability and core symptoms. This is a necessary step before the wide implementation of these measures as measures of change in treatment and intervention studies.

Definition MECP2 is the primary gene implicated in Rett Syndrome, a neurodevelopmental disorder that primarily affects females. MECP2 is a gene located on the X chromosome that encodes the protein Methyl CpG-binding protein 2 (MECP2). Inactivation of a single copy of MECP2 leads to impaired language, social skills, and motor coordination, as well as scoliosis, dysregulated breathing, and seizures in females. Deletion of both copies of MECP2 in mice mimics the symp- toms of Rett Syndrome.

in females. Deletion of both copies of MECP2 in mice mimics the symp- toms of Rett Syndrome. Duplication in MECP2 gene has been implicated in severe male intellec- tual disability–associated premature death. MECP2 is expressed throughout the body with strongest expression in neurons. MECP2 func- tions as a transcriptional repressor, thus turning off expression of other genes.

Medial Temporal Lobe Avery Voos1 and Alexander Westphal2 1Yale Child Study Center, New Haven, CT, USA 2Division of Law and Psychiatry, Yale Child Study Center, Yale School of Medicine, New Haven, CT, USA

Definition The medial temporal lobe (MTL) is a region within the cerebral cortex comprised of a system of anatomically related structures, including the hippocampal region and the adjacent entorhinal, perirhinal, and parahippocampal cortices. This system is involved in the creation of declarative memory (see Squire, 1991 and 2004 for a review) and also in the regulation of emotional reactions. The MTL has been discussed as one of the can- didate neural substrates underlying the social

The MTL has been discussed as one of the can- didate neural substrates underlying the social deficits in autism. Evidence from monkey studies demonstrates that neonatal lesions to the MTL result in persistent socioemotional abnormalities later in life. Additionally, declarative memory seems to be affected in high-functioning individ- uals with ASD who were found to have deficits in episodic memory, with relatively intact semantic memory. Postmortem investigation of the brain in eight individuals

with relatively intact semantic memory. Postmortem investigation of the brain in eight individuals with autism also revealed microscopic cytoarchitectonic abnormalities (increased cell density and small cell size) in MTL structures.

Definition Medicaid is a healthcare program in the United States (US) that covers over 65 million Ameri- cans (Centers for Medicare and Medicaid Services 2019). In addition to providing cover- age for healthcare services for low-income indi- viduals, pregnant women, and children, Medicaid is a critical support for individuals with disabilities including physical disabilities, intellectual and developmental disabilities (IDD), and autism spectrum disorder (ASD) (Centers for Medicare and

and developmental disabilities (IDD), and autism spectrum disorder (ASD) (Centers for Medicare and Medicaid Services 2019; Mark et al. 2003; Shattuck et al. 2009; Shea et al. 2018; Vladeck 2003; Wang et al. 2013). Since Medicaid is among the only insur- ance programs available in the USA for trans- itioning youth with disabilities, more than ten million adults and children with disabilities are enrolled in Medicaid on the basis of their disabil- ity including those with ASD (Medicaid and CHIP

enrolled in Medicaid on the basis of their disabil- ity including those with ASD (Medicaid and CHIP Payment and Access Commission (MACPAC) 2017).

Historical Background Medicaid emerged in US healthcare policy in 1965 as Title XIX of the Social Security Act during the Lyndon B. Johnson administration and has, over the past six decades, been a key payer for services for individuals with disabil- ities including ASD (Centers for Medicare and Medicaid Services 2015). Early Periodic Screening, Diagnosis, and Treatment (EPSDT) was established in 1967, for example, and pro- vides a comprehensive suite of medically nec- essary services for all

1967, for example, and pro- vides a comprehensive suite of medically nec- essary services for all Medicaid-enrolled children through age 20 (English 1993; Wirth and Gabor 2016). EPSDT, depending on the state, pays for ASD screening, diagnosis, and evidence-based treatments like applied behavior analysis (ABA) (Autism Speaks 2017; Wirth and Gabor 2016).

Additionally, Medicaid 1915(c) home- and community-based services (HCBS) waivers, cre- ated in 1981, allow individuals with disabilities to receive services in their homes and communities as opposed to institutional settings like nursing homes, hospitals, or state centers (Braddock et al. 2011; Centers for Medicare and Medicaid Services 2015; Ng et al. 2012; Rizzolo et al. 2013). Through HCBS waivers, individuals can receive an array of services and supports such as habilitation, employment

waivers, individuals can receive an array of services and supports such as habilitation, employment supports, respite care, transportation, behavior supports, and community support (Braddock et al. 2011). HCBS waivers vary in availability across the lifespan or specifi- cally for children with ASD and are typically capped in enrollment or have limits on amounts of services that can be provided. However, HCBS waivers are especially critical for adults with ASD after they are no longer able to

However, HCBS waivers are especially critical for adults with ASD after they are no longer able to access entitlement- based services and supports through the education system and EPSDT (Koffer Miller et al. 2017; Rizzolo et al. 2013; Shattuck et al. 2012).

Current Knowledge There has been increasing attention to the use of Medicaid-funded services by individuals with ASD of all ages as this population grows, as it is among the only insurers available across the lifespan. Several studies (Semansky et al. 2011; Shattuck et al. 2009; Shea et al. 2018; Wang and Leslie 2010) have explored the prevalence of individuals with ASD enrolled in the Medicaid system, by state and nationally, and have observed increasing use of Medicaid among individuals on

system, by state and nationally, and have observed increasing use of Medicaid among individuals on the spectrum over time (Semansky et al. 2011). Exploring the use of Medicaid among the ASD population has yielded a tremendous amount of knowledge about the changing clinical, policy, and services landscape including average age of diagnosis as it differs by race/ethnicity (Mandell et al. 2002), expenditures and societal costs (Cidav et al. 2013; Mandell et al. 2006), program experiences and

expenditures and societal costs (Cidav et al. 2013; Mandell et al. 2006), program experiences and provider training needs (Koffer Miller et al. 2017), and unwanted outcomes, such as hospitalization (Mandell et al. 2012; Turcotte et al. 2018). Analyzing Medicaid data in studies allows researchers to observe patterns in service use, expenditures, inpatient versus outpatient service utilization, and medication usage and see how that changes over time as individuals age. A study using national

and medication usage and see how that changes over time as individuals age. A study using national Medicaid data from all states, including Washington, D.C., found that as indi- viduals with ASD are aging into adulthood, they are increasingly reliant on publicly funded ser- vices through Medicaid (both psychiatric and medical) and the expenditures for those services are also increasing (Shea et al. 2018). This knowl- edge helps researchers and policymakers alike to understand the changing needs

2018). This knowl- edge helps researchers and policymakers alike to understand the changing needs of this growing population.

Future Directions Because it has become a primary payer for behav- ioral health, HCBS, and other services that are necessary for many individuals with ASD (Centers for Medicare and Medicaid Services (CMS) 2017; Koffer Miller et al. 2017) and does not rely on employment for eligibility and cover- age (Croen et al. 2014; Koffer Miller et al. 2017), Medicaid is an integral support system for indi- viduals with ASD across the lifespan in the USA. As such, it is critical that researchers focus

viduals with ASD across the lifespan in the USA. As such, it is critical that researchers focus their efforts on understanding the interplay between ASD and Medicaid through service utilization and expenditures and the changes in service access across the lifespan.

Children with autism spectrum disorders (ASD) including autism, Asperger’s syndrome, and per- vasive developmental disorder, not otherwise specified, have similar medical problems as chil- dren without disabilities. These children can have colds or ear infections as well as other typical illnesses of childhood and adolescence. Little research has addressed the medical problems of adults with autism. The primary care provider should monitor the health of individuals with ASD in the “medical

autism. The primary care provider should monitor the health of individuals with ASD in the “medical home.” The medical home describes a source of primary care that is accessi- ble, continuous, culturally sensitive, and provid- ing coordinated care. A recent report indicated that children with autism spectrum disorders were less likely than children with other special needs to receive their care in a medical home (Brachlow et al. 2007). This leads to more finan- cial needs for the parents and

in a medical home (Brachlow et al. 2007). This leads to more finan- cial needs for the parents and more problems with access to care (Kogan et al. 2008). In addition to routine and disorder-specific anticipatory guid- ance, individuals with ASD need to be monitored for medical conditions for which they may be at higher risk including seizures, genetic abnormal- ities, sleep disorders, disordered eating/nutritional issues, pica, and GI issues.

Seizures Seizures develop in approximately 10–25% of children with autism (Myers et al. 2007). There is no one type of seizure that is more common than other seizure types. Children with ASD can have absence seizures (staring spells), tonic-clonic sei- zures (grand mal seizures), myoclonic jerks, atonic seizures (drop attacks), or partial seizures (movements without loss of consciousness). The first peak time for onset of seizures in children with ASD is between 1 and 5 years of age. The second

peak time for onset of seizures in children with ASD is between 1 and 5 years of age. The second peak occurs in adolescence between 12 and 18 years of age (Myers et al. 2007). The anticonvulsant medications used for other indi- viduals with seizures are used to treat seizures in individuals with ASD.

Landau–Kleffner syndrome is a seizure disor- der that may be considered in the differential diagnosis of ASD. This rare type of seizure has a characteristic EEG pattern and can cause a regres- sion in language or aphasia (Kliegman et al. 2007). Landau Kleffner syndrome is more com- mon in boys, with regression in language and seizure onset in previously socially typical chil- dren at around age 5. This regression occurs later than that typically seen in ASD. Some of the behaviors can be

age 5. This regression occurs later than that typically seen in ASD. Some of the behaviors can be similar to those seen in children with ASD including agitation, poor attention span, and irritability. In 70% of the children with Landau Kleffner syndrome, there is another seizure type. Obsession and insistence on routine are not typically seen. Anticonvulsant medication may improve symptoms in Landau Kleffner syn- drome. Anticonvulsant medication may be useful for agitation or other behaviors in

Kleffner syn- drome. Anticonvulsant medication may be useful for agitation or other behaviors in children with ASD in addition to seizure control, but it does not improve language.

In general, seizures are not a sensitive predictor of outcome in children with ASD. However, the prevalence of seizures is higher among individ- uals with moderate to severe intellectual disability and those with motor deficits. In children with severe intellectual disability and ASD, seizures may occur in up to 42%. In children without intellectual disability, etiologic or genetic diagno- sis, or family history of epilepsy, the rate is only 6–8%. Individuals with autism plus epilepsy have on

or family history of epilepsy, the rate is only 6–8%. Individuals with autism plus epilepsy have on the average lower IQs and poorer adaptive, behavioral, and social outcomes than those with- out epilepsy. There are also higher rates of abnor- malities on electroencephalography (EEG) without clinical seizures among people with ASD. The rate may be as high as 10–72%. The medical literature has not demonstrated benefit to treating these electroencephalographic abnormal- ities. There is currently

demonstrated benefit to treating these electroencephalographic abnormal- ities. There is currently not enough evidence to suggest routine screening EEGs without history or clinical evidence of seizures (Myers et al. 2007).

Genetic Abnormalities There is a 60–90% concordance rate of ASD in identical twins, which means that most of the time identical twins both have ASD. In fraternal twins, there is only a 30% concordance rate (Kliegman et al. 2007). Recent studies support that a strong genetic predisposition to autism is genetic, although there is a significant environmental impact as well. No consistent genetic abnormalities are found in individuals with ASD, although the overall prevalence of genetic

genetic abnormalities are found in individuals with ASD, although the overall prevalence of genetic abnormalities on testing may be as high as 20%. The rate of fragile X is reported to be 0.045%, and the rate of abnormality on karyotype (or evaluation of the structure of stained chromosomes by microscopy) is 5% or less (Miller et al. 2010). A new genetic test called chromosomal microarray (CGH) compares the units of DNA in an individual to the composite normal to identify duplications (gain of

the units of DNA in an individual to the composite normal to identify duplications (gain of material) or deletions (loss of material). Abnormalities on CGH microarray are seen in approximately 17–20% of the children with autism spectrum disorders who complete this testing (Shen et al. 2010). Not all of the abnormalities found on CGH microarray in individuals with ASD are associated with or cause autistic symptoms.

In the most thor- ough and recent study, 9% of CGH abnormalities were considered abnormal or likely to be causa- tive of the autism symptoms. Children with dys- morphic (or unusual) features and those with lower cognitive skills are more likely to have abnormalities on genetic testing. Newer genetic testing includes whole exome sequencing to look for regions with increased recessive genes. Nine- teen genes have been identified as candidate genes for causing ASD through this new testing. The

teen genes have been identified as candidate genes for causing ASD through this new testing. The whole exome sequencing leads to a syndromic diagnosis for 12–15% of children with ASD (Tamimi et al. 2015). Specific syndromes associated with ASD include X-linked intellectual disability, tuberous sclerosis, and Angelman syndrome, among other disorders. Fragile X is the most common inherited cause of intellectual disability. These children have intellectual disability, macrocephaly, large pinnae,

intellectual disability. These children have intellectual disability, macrocephaly, large pinnae, hypotonia, and joint laxity (Johnson et al. 2007). Roughly 20% of the children with fragile X also have ASD symptoms (Hatton et al. 2006). However, only 0.045% of children with ASD have fragile X (Shen et al. 2010). Children with tuberous sclerosis have hypopigmented skin areas, have brain and skin tumors (CNS hamartomas and fibroangiomata), are at a high risk for seizures, and have ADHD or

skin tumors (CNS hamartomas and fibroangiomata), are at a high risk for seizures, and have ADHD or autistic-like behaviors. Angelman syndrome is characterized by global developmental delays especially with language, a wide-based ataxic gait, and progres- sive spasticity with a particularly jovial personal- ity. This is caused by various genetic abnormalities of chromosome 15 q11–13. Females with symptoms of ASD should be considered for Rett syndrome caused by the MeCP2 gene. Midline

with symptoms of ASD should be considered for Rett syndrome caused by the MeCP2 gene. Midline hand-wringing or patting behaviors will typically distinguish these children from those with ASD alone.

Sleep Disorders Sleep problems are very common in children with autism spectrum disorders and can occur through- out childhood and adolescence. The sleep disor- ders are variable and can include difficulty settling to sleep, early rising, night wakening, sleepwalking, or night terrors. The lack of sleep can affect daytime functioning including behav- iors, cognitive skills, and memory. Frequent sleep problems greatly affect family stress and functioning. Sometimes, there is a medical cause for

problems greatly affect family stress and functioning. Sometimes, there is a medical cause for the sleep problems such as gastroesophageal reflux, obstructive sleep apnea, or nutritional deficiency (e.g., decreased iron stores associated with rest- less legs syndrome). Children with GERD or gas- troesophageal reflux disease can have some vomiting or discomfort during the night from stomach acid refluxing into the esophagus. Obstructive sleep apnea is a respiratory problem during sleep where the

into the esophagus. Obstructive sleep apnea is a respiratory problem during sleep where the airway does not remain patent. This causes the person to awaken. With the interrupted sleep, children can be inattentive or agitated during the day (Myers et al. 2007). The medical literature does not contain data at this time regarding the frequency of medical causes for sleep difficulties in people with ASD. History and physical exam are used to determine the need to perform a medical workup for causes

History and physical exam are used to determine the need to perform a medical workup for causes of sleep problems. In most children, behavioral measures are used to treat the sleep problems. Behavioral measures can include setting up a bed- time routine. Medications sometimes used include melatonin, alpha-adrenergic agonists (such as clo- nidine and guanfacine), and antihistamines (such as diphenhydramine). Further research needs to be done on the causes of sleep difficulties in people with ASD

Further research needs to be done on the causes of sleep difficulties in people with ASD as well as effective treatments.

GI Issues The prevalence of GI issues in children with autism spectrum disorders varies from 9% to 72%. The most common problems are chronic constipation or chronic diarrhea. One reason for the difficulty in assessing this problem is the com- munication difficulty children with ASD often have. Many children are nonverbal, and many of those who can communicate have difficulty with describing subjective feelings or isolating a source of pain. Some children will not have identifiable symptoms

subjective feelings or isolating a source of pain. Some children will not have identifiable symptoms relative to the GI tract but instead will have behavioral changes or changes in sleep pat- terns as evidence of GI issues. Careful evaluation including full physical exam and medical history are indicated anytime there are major changes in the behavior of an individual with ASD. The common GI problems that are seen in other people can also be seen in people with ASD. An individual with

GI problems that are seen in other people can also be seen in people with ASD. An individual with constipation might have hard infrequent stools or might stool daily with distress. They might also have behavioral problems that are only clarified when physical exam palpation stool or an X-ray identifies signif- icant constipation. Treatment might include a bowel regimen. Chronic diarrhea is also reported in people with ASD. The same etiologic workup entertained for other patients should be

reported in people with ASD. The same etiologic workup entertained for other patients should be performed. Abdominal discomfort may be due to common problems such as lactose intolerance or less frequent medical disorders such as celiac disease. History and physical exam are important sources of information to the clinician in deter- mining initial workup and appropriate referral to a gastroenterologist. The evidence for autistic enterocolitis (leaky gut) is limited at this time. The evaluation

The evidence for autistic enterocolitis (leaky gut) is limited at this time. The evaluation of children with ASD and GI symptoms found no difference in enzyme activity, intestinal perme- ability, or inflammation compared to typically developing children (Kushak et al. 2016). Pro- spective studies need to be done on the causes and treatments of the GI symptoms reported in individuals with ASD.

Nutritional Deficiencies Food aversions are commonly reported in chil- dren and youth with ASD. In addition to self- restriction, dietary restriction for therapeutic rea- sons might occur. The gluten-free and casein-free diet is a popu- lar dietary treatment for the symptoms of autism. This involves removing all foods that contain gluten from wheat, barley, and rye and casein, found in milk products. This diet may impact protein quality of food consumed (Arnold et al. 2003). It also requires

This diet may impact protein quality of food consumed (Arnold et al. 2003). It also requires provision of an alternate source of calcium and vitamin D than dairy products. Children with ASD who have a limited food repertoire are at risk for consumption of an inad- equate diet (Bandini et al. 2010). Many children with ASD are supplemented with vitamins, but this can lead to excess in some vitamins. (Stewart e al. 2015) The impact of a limited diet on long- term health requires further study.

Pica Pica is the ingestion and mouthing of nonfood objects. Chewing or mouthing toys and things in the environment is typical in children less than 12 months of age. Pica can persist because of sensory reasons, delay to a younger developmen- tal level, and anxiety and may be due to nutritional deficiencies such as iron deficiency. Pica can also lead to increased lead levels from ingestion of lead dust in the environment or items manufactured with lead. It is advisable to continue monitoring lead

in the environment or items manufactured with lead. It is advisable to continue monitoring lead levels in children who continue to have pica beyond the toddler stage when monitoring typi- cally occurs (Myers et al. 2007).

Pathophysiology There are a number of medical conditions associ- ated with autism spectrum disorders (ASD). Except for some genetic and neurologic abnor- malities, medical conditions associated with ASD are not responsible for the symptoms of autism. Discomfort and medical illness can exac- erbate behavioral symptoms. Medical and dental causes of new-onset behaviors should be considered. Hypotheses have been generated associating GI pathology such as leaky gut or increased per- meability with

have been generated associating GI pathology such as leaky gut or increased per- meability with symptoms of ASD. More recent studies have not confirmed this association; how- ever, the potential for disorders affecting the brain and gut requires further study. There is no specific pathology identified to cause the constipation, diarrhea, or abdominal pain reported in children with ASD. Lymphonodular hyperplasia (lymph nodes in the intestine) may be a normal variant. Investigators are pursuing the

hyperplasia (lymph nodes in the intestine) may be a normal variant. Investigators are pursuing the possibility of immunologic differences in the intestine in chil- dren with ASD. The etiology of the sleep difficulties of children and youth with ASD may be related to abnormal melatonin metabolism, atypical sleep architecture, restless legs syndrome, or behavioral sleep disor- ders. Etiologic and therapeutic studies are ongo- ing to address sleep in individuals with ASD.

See Also ▶Gastrointestinal Disorders and Autism ▶Genetics ▶Intestinal Permeability Studies ▶Leaky Gut Syndrome ▶Physical and Neurological Examination ▶Pica ▶Seizure ▶Seizure Disorder    Medical Education on Autism Golnaz Ghaderi1 and Kelly D. Coons-Harding2 1Department of Social Sciences, University of Ottawa, Ottawa, ON, Canada 2Department of Psychology, Laurentian University, Sudbury, ON, Canada  Historical Background Research shows that medical practitioners, including family physicians and

Historical Background Research shows that medical practitioners, including family physicians and pediatricians, are often the first healthcare professionals whom families of individuals with a suspected diagnosis of ASD are referred to in order to receive a diag- nosis and/or to receive treatment (Self et al. 2015). Nonetheless, families of individuals with ASDs have raised concerns about the diagnostic and treatment processes of ASDs. Families of individ- uals with ASDs often feel unsupported

and treatment processes of ASDs. Families of individ- uals with ASDs often feel unsupported because of medical practitioners’ lack of knowledge and competency around the diagnosis and treatment of ASDs, misdiagnosis with other disabilities (e.g., attention deficit hyperactivity disorder), as well as multiple referrals (Brookman-Frazee et al. 2012; Glazzard and Overall 2012). Furthermore, research investigating the experiences of medical practitioners providing care for individuals with ASDs have

the experiences of medical practitioners providing care for individuals with ASDs have revealed that many providers lack expertise about the diagnosis of, or the iden- tification of, ASDs (Brookman-Frazee et al. 2012; Dosreis et al. 2006). Additionally, medical pro- fessionals often report that they do not receive ASD-specific education and training during med- ical school (Finke et al. 2010), and many medical practitioners feel unskilled when providing care for individuals with ASD (Crais et al.

medical practitioners feel unskilled when providing care for individuals with ASD (Crais et al. 2014).

Current Knowledge Despite medical professionals reporting that they often feel unprepared to address ASDs in primary care, relatively little is known about the actual con- tent within medical education regarding ASD and developmental disabilities. Medical practitioners often attribute their lack of preparedness regarding the diagnosis and treatment of ASDs to the lack of education and training they receive during their undergraduate medical education (Carbone et al. 2010; Daniels et al. 2014;

receive during their undergraduate medical education (Carbone et al. 2010; Daniels et al. 2014; Rhoades et al. 2007). It is important to note that formal medical education differs widely across countries, provinces or states, and even medical schools. Therefore, there is a lack of consistency within medical education when it comes to formal training about ASDs. While some medical professionals may feel prepared to work with individuals with ASD and their families, other providers may report

may feel prepared to work with individuals with ASD and their families, other providers may report that they have had no experi- ence or education about ASD. By way of example, many pediatricians have reported a lack of ASD-specific education and train- ing during medical school (Finke et al. 2010). Addi- tionally, some of the physicians (i.e., family physicians, pediatricians, developmental pediatri- cians, and psychiatrists) in Ontario, Canada, have indicated that they may have received only

cians, and psychiatrists) in Ontario, Canada, have indicated that they may have received only one lecture regarding ASD during their undergraduate medical education and that they often had to educate themselves through attending conferences, work- shops, and trainings (Ghaderi and Watson in review). Nonetheless, medical students who have received hands-on and in vivo experience working with individuals with ASDs during their medical education have reported higher levels of knowledge, comfort,

with ASDs during their medical education have reported higher levels of knowledge, comfort, as well as more positive attitudes toward working with this population compared to students who have not received such trainings (Havercamp et al. 2016). There is a lack of existing research and poor training (e.g., limited and not very efficient). Consequently, medical providers are often ill- prepared to address the needs of their patients with ASDs.

Future Directions Given medical practitioners’ concerns regarding the lack of education and training on ASD during medical education, it is imperative for future research to investigate the current medical educa- tion and the curriculum content on ASDs specif- ically. There is a demonstrated need for increased exposure to consistent, formalized education on ASD within the medical field.

Some future research and practice recommen- dations include: 1. The promotion of further ASD-specific education and training in medical schools that includes for- mal education on key issues regarding the preva- lence, identification, diagnosis, and treatment of ASDs. It is possible that students currently do not have an interest in these topics and greater expo- sure to individuals with ASDs, and other devel- opmental disabilities, may increase their awareness and interest in working in this

other devel- opmental disabilities, may increase their awareness and interest in working in this field.

2. The integration of clinical and hands-on work- ing experiences with the ASD population is important. Employing teaching strategies that include a combination of didactic teaching, small-group discussions, and case studies would improve medical students’ knowledge regarding the specific needs of individuals with ASDs as they transition into medical practice.

3. There is a need for further formal education and training opportunities that include experi- ential learning. Additionally, medical learners may also benefit from lectures or discussions delivered by individuals with ASDs and lived experiences, as well as educational sessions paired with standardized patient encounters in order to improve their knowledge regarding the diagnosis and treatment of ASDs.

4. Given the large number of topics learners must cover in their medical education, students should also feel prepared and be encouraged to add to their own education and acquire information from informed and reliable sources, when necessary. Learners should be encouraged to engage in individual learning opportunities about ASDs and other develop- mental disabilities.

See Also Autism Physician Handbook (Canadian Edition): https://autismcanada.org/wp-content/uploads/ 2018/01/PhyHandbook_EN_2018.pdf
Canadian Paediatric Society: Condition-specific screening tools and rating scales https://www. cps.ca/en/tools-outils/condition-specific-screen ing-tools-and-rating-scales#autism

Clinical Practice Guidelines - recently updated primary care guidelines for adults with intel- lectual and developmental disabilities: Sulli- van, W.F., Diepstra, H., Heng, J., Ally, S., Bradley, E., Casson, I., ... Witherbee, S. (2018). Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Canadian Family Phy- sician, 64(4), 254–279. http://www.cfp.ca/ content/cfp/64/4/254.full.pdf

Healthcare professionals in the USA have been mandated to utilize early developmental screening tools in order to identify develop- mental issues in children as young as 9 months of age (Self et al. 2015).

Theoretical Models and Autism Encyclopedia Entry   All children diagnosed with an autism spectrum disorder should have an evaluation by a medical professional to consider the potential causes of developmental disability and evaluate the individ- ual for common co-occurring medical conditions. The medical evaluation includes a thorough med- ical history including family history, physical examination, and neurological examination. Con- sideration of genetic causes requires laboratory testing most

and neurological examination. Con- sideration of genetic causes requires laboratory testing most commonly using chromosomal microarray if no specific syndrome requires workup. Other genetic screening tests might include testing for X-linked intellectual disability, Rett syndrome, or other diagnoses suggested by the history and physical examination.

Historical Background In 1941, Dr. Leo Kanner first described autism as a discrete disorder. Around the same time, Dr. Hans Asperger identified a similar disorder in Germany. While a similarity to childhood schizophrenia led many to consider autism a psy- chiatric disorder, Dr. Bruno Bettelheim in the 1950s attributed it to cold parenting. In the 1960s, Dr. Bernard Rimland proposed that there was a biologic basis for autism. This led the way to thinking about medical evaluation for etiology of

a biologic basis for autism. This led the way to thinking about medical evaluation for etiology of ASD. The capacity to karyotype and see genetic abnormalities in the chromosomes associ- ated with disease states was developed in the1960s. This advance permitted the identifica- tion of the chromosomal abnormalities responsi- ble for genetic syndromes. Chromosome analysis was not routinely done on children with develop- mental differences until 1966. The biggest break- through in etiologic

on children with develop- mental differences until 1966. The biggest break- through in etiologic evaluation of developmental disability occurred when phenylketonuria or PKU was identified as a metabolic problem that could cause intellectual disability and autism. This dis- order resulted in ASD in 20% of untreated cases. Now, with newborn screening, it is a preventable cause of ASD. It is routine for babies in the USA to be screened for PKU and other metabolic dis- orders. Prenatal infections

for babies in the USA to be screened for PKU and other metabolic dis- orders. Prenatal infections need to be considered in the etiology of ASD. Prior to the introduction of the rubella vaccine, congenital rubella was a cause of autism that has now been all but eliminated. Advances in neuroimaging allow for investi- gation of central nervous system anomalies when indicated by history and physical examination.

Current Knowledge The current recommendation for evaluation of children diagnosed with autism spectrum disorders is to start with a thorough history and physical exam. The clinician should obtain a three-generation genetic family history and full history including past medical history, develop- mental history, and behavioral history. The history often guides the rest of the evaluation. All children with language delays should have a hearing eval- uation. In children who are school age and

with language delays should have a hearing eval- uation. In children who are school age and verbal, school-based hearing screening may suffice (Myers et al. 2007). An important part of the medical evaluation of an individual with autism spectrum disorders is measuring growth parameters: height, weight, and head circumference. A calculated BMI should be included at each health visit since obesity is a serious co-occurring health problem in people with ASD. Head circumference is often larger than

a serious co-occurring health problem in people with ASD. Head circumference is often larger than average in early childhood in children with ASD. Medical problems that occur with greater frequency in people with ASD than the general population should be screened for in the medical evaluation and then routinely in health mainte- nance visits. While physical symptoms may be related to an etiologic cause of ASD, they may be related to core symptoms such as anxiety or repetitive behaviors. Anxiety

cause of ASD, they may be related to core symptoms such as anxiety or repetitive behaviors. Anxiety appears to be related to both intestinal and sleep issues (Ferguson et al. 2017; Mazurek and Petroski 2015). All of these disorders may reflect differences in autonomic tone. Individuals with ASD should be monitored for the following associated medical problems:

*   Sleep disorders like insomnia and night wakening *   Gastrointestinal problems like constipation and selective eating *   Seizures *   Attention deficit hyperactivity disorder *   Anxiety disorders *   Wandering or elopement (the major cause of death in children with ASD is accidents)

The next level of testing depends on the com- bined information from the history and physical exam. Routine EEG and neuroimaging are not recommended by the American Academy of Pedi- atrics at this time. MRI is indicated with recent or atypical regression, an abnormal neurologic exam, or a suggestive history for neurologic dis- ease. EEG is indicated with recent or atypical regression or a history suggestive of seizures. The current newborn screening in the USAwill pick up many of the inborn

suggestive of seizures. The current newborn screening in the USAwill pick up many of the inborn errors of metabolism such as PKU, galactosemia, and congenital hypo- thyroidism. If the newborn screening was not completed or is not available, then metabolic test- ing with quantitative amino acids should be con- sidered in a child whose history and physical exam suggest possible inborn errors. Maternal screening for rubella identifies pregnancies at risk for congenital rubella syndrome. Comparative

screening for rubella identifies pregnancies at risk for congenital rubella syndrome. Comparative genomic hybridization microar- ray is considered the first-line genetic evaluation in the workup of ASD without a suspected spe- cific etiology by the American College of Genet- ics. Studies report that from 10% to 17% of children with an ASD will have an abnormality on this testing (Shen et al. 2010).

However, most of these abnormalities are considered benign. Children with intellectual disability, female gen- der, or dysmorphic feature may be more likely to have a genetic etiology identified from these eval- uations (Roesser 2011). While comparative geno- mic hybridization (CGH) microarray can pick up a large number of duplications or deletions, there are some translocations that can only be seen on karyotype. Karyotype examination is often obtained when there is a family history of greater

on karyotype. Karyotype examination is often obtained when there is a family history of greater than two miscarriages or a specific diagnosis such as Down syndrome is suspected. A newer technology, whole exome sequenc- ing, evaluates the entire genetic code but focuses on areas with more functionally important genes (called the exome). The whole exome sequencing leads to confirmation of a syndromic diagnosis for 12–15% of children with ASD (Tammimies et al. 2015). Overall 30% of children with ASD

diagnosis for 12–15% of children with ASD (Tammimies et al. 2015). Overall 30% of children with ASD are found to have genetic abnormalities on WES. History and examination may guide the clini- cian to order testing for specific disorders associ- ated with ASD. Genetic testing for Rett syndrome should be considered in girls diagnosed with ASD. They may demonstrate microcephaly or deceleration of head growth in early childhood. Other clinical markers of Rett syndrome include stereotypical hand

head growth in early childhood. Other clinical markers of Rett syndrome include stereotypical hand movements and psychomotor regression.

Patients with webbing of toes, mildly dysmorphic features, or failure to thrive could have Smith-Lemli-Opitz syndrome. In this case, 7-dehydrocholesterol level should be sent. A lipid panel may also pick up the extremely low choles- terol level. Children with ASD and seizures should be considered for a possible diagnosis of Angelman syndrome. It is associated with a chro- mosome 15 abnormality in the same region as Prader-Willi syndrome. Boys with intellectual disability/learning disability

in the same region as Prader-Willi syndrome. Boys with intellectual disability/learning disability should be considered for the DNA testing for fragile X syndrome espe- cially if there is a family history on the maternal side of learning challenges. About 20–30% of children with fragile X will also have ASD. How- ever the yield of fragile X testing in children with ASD is quite low at 0.05% (Roesser 2011; Chen 2011; Weinstein et al. 2017). Children with macrocephaly may be at increased risk of

2011; Chen 2011; Weinstein et al. 2017). Children with macrocephaly may be at increased risk of PTEN (phosphatase and tensin homolog) gene mutations. PTEN mutations alter tumor suppression and are associated with hamartomatous syndromes such as Bannayan- Riley-Ruvalcaba syndrome and Cowden syn- drome. Family members are at risk for tumors in the thyroid, breast, and uterus. Any child with macrocephaly and family history of any of these cancers should have genetic evaluation for PTEN mutations.

and family history of any of these cancers should have genetic evaluation for PTEN mutations. Referral to a geneticist may be indicated for assessment of genetic etiologies of ASD for genetic workup, evaluation for suspected meta- bolic disease, diagnosis of dysmorphic syn- dromes, and genetic counseling. Children with regression, movement disorders, microcephaly, neurocutaneous lesions, midline facial defects, abnormalities in neurologic examination, or a his- tory of seizures may require

facial defects, abnormalities in neurologic examination, or a his- tory of seizures may require referral to a neurolo- gist. MRI may be necessary. A screening MRI is not necessary for macrocephaly alone or single cafe au lait spot. EEG may be needed if there is suspicion of seizures. Seizures are seen in 25% of children with autism.

Lead testing is not part of the routine etiologic workup for autism but could be considered for children with pica or for those at environmental risk if not previously obtained in the course of well-child care. Children with pica are at continued risk of lead poisoning at a much older ages. Children with limited diets may benefit from nutritional evaluation to ensure adequate growth and development. Low iron stores might be asso- ciated with sleep problems related to restless legs syndrome.

Low iron stores might be asso- ciated with sleep problems related to restless legs syndrome. Iron stores may be low before anemia occurs.

Future Directions Over time, genetic diagnostics have become more accurate. Initially testing could only identify large abnormalities using karyotype analysis. Now, smaller abnormalities can be detected. The tech- nology is emerging, so the clinical significance of some of the findings is not clear. The use of large datasets will permit investigation of the relation- ship of specific genetic abnormalities, neurophys- iologic profiles on EEG, and MRI findings with both etiology and treatment

abnormalities, neurophys- iologic profiles on EEG, and MRI findings with both etiology and treatment response (Payakachat et al. 2016). As the cost of genetic testing decreases and the implications of the results are linked with actionable steps in care, more individ- uals with ASD will be tested. New uses for MRI, functional imaging, and brain spectroscopy will be evaluated, and as the findings are linked to clinical decision-making, outcomes will change the recommendations for use.

Medical Home and ASD Lisa Honigfeld and Judith Meyers Child Health and Development Institute of Connecticut, Farmington, CT, USA  Definition An effective approach for delivering comprehen- sive pediatric primary care medical services to all children, including those with ASD.

Historical Background Children with autism spectrum disorder (ASD) and their families receive many services delivered in their homes, schools, early care and education programs, and community agencies, but the pri- mary health-care site plays a unique and signifi- cant role in the care for children with, and at risk for, ASD. Although all children may not receive home visiting services, or may not attend early care and education programs, more than 90 per- cent of young children, across all

not attend early care and education programs, more than 90 per- cent of young children, across all racial, ethnic, and socioeconomic categories, have a visit with a health provider each year (Department of Health and Human Services 2014). The American Acad- emy of Pediatrics (AAP) guidelines for pediatric primary care, which are accepted by state Medic- aid programs and commercial insurance plans, call for 13 well-child visits before school entry (American Academy of Pediatrics 2015), at which

call for 13 well-child visits before school entry (American Academy of Pediatrics 2015), at which child health providers are to perform the follow- ing: immunizations, sensory and metabolic screenings, developmental screening, complete physical exams, and anticipatory guidance to sup- port parents in raising their children. These visits provide child health providers with frequent opportunities to identify children who may have, or may be at risk for, ASD, connect them to diagnostic and

to identify children who may have, or may be at risk for, ASD, connect them to diagnostic and intervention services, and monitor their health and development over time.

An effective approach for delivering pediatric primary care medical services to all children, including those with ASD, is the medical home model. A pediatric medical home provides access outside of traditional office hours, continuity of care with a team of providers who work in part- nership with families, linkage to medical and non- medical services outside of the practice, care that is coordinated across all services that children use, and services that meet the needs of all patients in a

across all services that children use, and services that meet the needs of all patients in a context that is respectful of their cultural and religious beliefs (Holt et al. 2010). Within the medical home model, several professionals par- ticipate in the care of children, including pediatri- cians, nurse practitioners, physician assistants, family physicians, and a variety of office staff members that include nurses, medical assistants, care coordinators, and administrative staff. A hallmark of

that include nurses, medical assistants, care coordinators, and administrative staff. A hallmark of the medical home model is that all staff members work together as a team with fam- ilies to support the needs of the children served in the practice.

The AAP developed the medical home model to guide child health providers in the care of children with complex medical needs (American Academy of Pediatrics 1992), and the concept has since been expanded to recognize that all children can benefit from having a medical home (American Academy of Pediatrics 2004). The AAP specifically called out the role of medical home in the care for children with ASD in 2013 (American Academy of Pediatrics Autism Expert Panel 2013) with publication of a resource

in 2013 (American Academy of Pediatrics Autism Expert Panel 2013) with publication of a resource guide for child health providers. The guide includes information on early identification, screening tools, coding to ensure reimbursement, and infor- mational handouts for families. The medical home has also become the perva- sive model of care for adults and is a popular component of health-care reform initiatives in several states (Van Vleet and Paradise 2014) that are working to transform their

initiatives in several states (Van Vleet and Paradise 2014) that are working to transform their health-care deliv- ery systems to contain costs, improve population outcomes, and enhance the patient experience. There are four national medical home accredita- tion programs, any one of which, when success- fully completed, allows primary care practitioners to participate in enhanced payment programs offered through insurance plans (American Acad- emy of Family Physicians 2015).

The widescale adoption of the medical home model is based on research showing that care from a medical home is of higher quality and costs less than care delivered in nonmedical home sites (Nielsen et al. 2016). For children with special needs, the medical home model has been shown to improve timeliness of care, health outcomes, family centeredness, and family functioning (Homer et al. 2008).

Current Knowledge Parents of children with ASD are less likely to report that their child has a medical home than parents of children in general or of children with other types of special needs (Brachlow et al. 2007), despite national trends toward medical adoption, evidence that the model meets the needs of children with special needs, and incen- tives for child health providers to transform their practices to be medical homes. As a result, fami- lies with children with ASD have a harder time

practices to be medical homes. As a result, fami- lies with children with ASD have a harder time gaining access to specialty services (Cheak- Zamora and Farmer 2015) and are more likely than families of children with other neurological disorders to make their own connections to neu- rology services (Ming et al. 2011). Families of children with ASD who report having a medical home also report fewer unmet needs (Farmer et al. 2014) than children whose parents report that they do not have a

fewer unmet needs (Farmer et al. 2014) than children whose parents report that they do not have a medical home.

Lower levels of parent satisfaction with pri- mary care as well as advocacy and education received are also reported by families of children with ASD compared to other children with special needs (Hyman and Johnson 2012; Carbone et al. 2010a). Pediatricians report that they are not ade- quately trained, lack the necessary time, and are challenged in meeting the needs of children with ASD and their families (Carbone et al. 2010b; Golnik et al. 2009). In addition to providing accessible, coordi-

families (Carbone et al. 2010b; Golnik et al. 2009). In addition to providing accessible, coordi- nated, and family-centered care, the medical home entails specific responsibilities that ensure early detection of ASD among all their patients, connection of children for whom there are concerns to diagnostic and intervention services, and ongoing monitoring of health and development.

Early identification of children with ASD is facilitated by developmental surveillance and screening for all children (American Academy of Pediatrics 2006). Developmental surveillance includes the following four major elements that support early detection of children with, or at risk for, developmental delays: soliciting parental con- cerns, maintaining a longitudinal record of devel- opment, observing the child, and obtaining input from individuals other than parents who care for the child

observing the child, and obtaining input from individuals other than parents who care for the child (e.g., early care and education pro- viders). Through developmental surveillance, child health providers can probe for clinical cues related to attention, social skills, and communica- tion and facilitate early identification of children who may have ASD (Carbone et al. 2010b). Developmental screening relies on the use of a formal tool. The AAP recommends that child health providers screen for

relies on the use of a formal tool. The AAP recommends that child health providers screen for developmental delay at the 9-, 18-, and 30-month well-child visits (American Academy of Pediatrics 2006). The AAP also recommends that child health providers use a formal tool to screen specifically for ASD at the 18- and 24-month visits. The most commonly used screening tool for ASD in primary care is the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) (Robins et al.

is the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) (Robins et al. 2009). The tool, scoring instruc- tions, and follow-up questions when parents report concerns on specific items can be obtained at no cost and in more than 30 languages, includ- ing several Spanish dialects. The M-CHAT-R/F includes 20 yes/no questions that parents can answer in less than 5 min; scoring by practice staff can be completed in 2 min. In many states, Medicaid and commercial insurers

by practice staff can be completed in 2 min. In many states, Medicaid and commercial insurers pay for screen- ing on the same day as a well-child visit.

The M-CHAT- R/F is validated for use with children up to 3 years of age. Sometimes parents and child health providers have concerns about older children’s social and communication skills and want to screen for ASD. The Childhood Autism Spectrum Test (CAST), previously called the Childhood Asperger Syndrome Test (Williams et al. 2008), has been validated for use in pediatric primary care for children ages 4–11. It contains 37 items to be completed by parents and is avail- able free of charge

ages 4–11. It contains 37 items to be completed by parents and is avail- able free of charge and in more than 15 languages. When surveillance or screening shows con- cerns that suggest ASD, child health providers rarely perform next level diagnostic assessment but connect children and families to such services. Options for assessment are largely determined by resources available in the local area. Developmen- tal pediatricians, behavioral health professionals, and neurologists may complete ASD

Developmen- tal pediatricians, behavioral health professionals, and neurologists may complete ASD and general developmental evaluations to verify a diagnosis. All states have early intervention (EI) programs under Part C of the Individuals with Disabilities Education Act. EI programs are required by the federal law to complete evaluations of children ages 0–3 with suspected developmental delay, including ASD, within 45 days of referral to the program. For children ages 3–5, Part B of the

including ASD, within 45 days of referral to the program. For children ages 3–5, Part B of the Individuals with Disabilities Education Act simi- larly requires timely evaluation upon referral. Part B and Part C programs also provide intervention services.

Although the therapeutic interventions for ASD will take place out of the medical home, there are several medical conditions that are asso- ciated with ASD and can be managed by pediatric primary care providers. These include epilepsy, gastrointestinal problems, and insomnia (Carbone et al. 2010b). Other conditions, such as motor impairments, sensory processing, and men- tal health disorders, which are also associated with ASD, may be identified in the medical home and require that the primary

are also associated with ASD, may be identified in the medical home and require that the primary care provider connect the child to specialty services (Carbone et al. 2010b).

To meet the medical and nonmedical needs of children with ASD, the medical home actively connects families to services. Other providers in the community expect the pediatric primary care medical home to stay involved by taking on responsibility for acute health care, continued well-child visits, and physical and developmental monitoring. Because there is no cure for ASD, child health providers, who often provide care to children from birth to 21 years, can expect to be involved with a changing

often provide care to children from birth to 21 years, can expect to be involved with a changing team of service providers in the community as the child with ASD ages (Swiezy et al. 2008). These relationships span from early intervention and childcare pro- viders for younger children to school personnel and employment services for older children. The medical home provider is often the single constant provider for families and children across the first 21 years of life and maintains a

single constant provider for families and children across the first 21 years of life and maintains a relationship with the family and comprehensive history that other service providers do not have. The role of the medical home in coordinating care over time is essential for ensuring best outcomes for children and optimal benefit from other services.

Family support is a critical component of care at the center of the medical home model that is often cited as lacking for children with ASD (Brachlow et al. 2007). In the same way that the medical home connects children and their families to subspecialty and intervention services, it also provides opportunities for families to connect with other families of children with ASD and with community family support opportunities. Many organizations exist for families of children with ASD, and the

family support opportunities. Many organizations exist for families of children with ASD, and the medical home maintains a list of those that are active in their specific community and contact information for them to give to par- ents. ASD parent support organizations, such as Autism Speaks, often have state and community level chapters, which offer a variety of services for families, including support groups, play groups, financial advising services, and recreational pro- grams for children with

groups, play groups, financial advising services, and recreational pro- grams for children with ASD as well as general educational information. There is also a plethora of websites for families that provide information about ASD. Table 1 provides a list of some of the most popular sites. The medical home can have resources, such as this list, for families. There are also several Facebook and other social media sites that promote a community among children with ASD and their families.

Medical Home and ASD, Table 1 Websites for parents of children with ASD | Organization/Website | URL | |----------------------|-----| | Asperger Syndrome and High Functioning Autism Association | www.ahany.org | | Autism Highway | www.autismhwy.com | | Autism Research Institute | www.autism.com | | Autism Society | www.autism-society.org | | Autism Speaks | www.autismspeaks.org | | AutismWeb | www.autismweb.com | | Disability Scoop | www.disabilityscoop.com |  In addition to providing family

www.autismweb.com | | Disability Scoop | www.disabilityscoop.com |  In addition to providing family support resources to families of children with ASD, the medical home also tailors its services to meet the special needs of these children. By the very nature of their condition, children with ASD may require special accommodations in the medical home, including longer visit times, shorter wait times, and accommodations for the performance of the physical exam (Volkmar et al. 2014). Many of the

and accommodations for the performance of the physical exam (Volkmar et al. 2014). Many of the procedures that are expected when children visit the doctor are challenging for children with ASD, including undressing, answering questions, allo- wing physical contact, and cooperating for immu- nizations and lab testing. Linking children with ASD to dental and subspecialty services also requires special consideration, and the medical home can maintain a list of referral sources in the community

consideration, and the medical home can maintain a list of referral sources in the community that are known to care for children with special needs.

Beyond medical subspecialty and community services, pediatric medical home providers are responsible for connecting children with ASD when they turn 21 to adult health-care providers (Carbone et al. 2010b). This can present chal- lenges for families and children as well as for the provider (Cheak-Zamora et al. 2013). A family is often reluctant to leave the health-care provider who has cared for their child since birth, and pro- viders struggle with identifying adult medical pro- viders who

their child since birth, and pro- viders struggle with identifying adult medical pro- viders who can care for the young adult with special needs and saying goodbye to longtime patients and their families. The AAP, American Academy of Family Physicians, and American College of Physicians have jointly endorsed a set of guidelines and activities for transitioning patients from pediatric to adult care (American Academy of Pediatrics 2015). The six core ele- ments of transition, which the guidelines

(American Academy of Pediatrics 2015). The six core ele- ments of transition, which the guidelines recom- mend should begin at age 12, include developing a practice transition policy for all children, mon- itoring and tracking transition activities for each patient, assessing transition readiness as part of well-child visits, collaborating with parents to develop a transition plan, preparing and implementing transfer of care with all necessary information, and following up with families to

and implementing transfer of care with all necessary information, and following up with families to ensure that transition was successful. The AAP provides several resources to help the pediatric medical home implement each of these elements.

Cultural competency is another important component of the medical home that pertains to children with ASD. Children who live in families who are of lower socioeconomic status, or are members of racial and ethnic minority groups, experience later identification of their ASD (Ennis-Cole et al. 2013). This could result from their parents having different expectations for child development and responding differently to screening questionnaires or developmental sur- veillance questions that are

differently to screening questionnaires or developmental sur- veillance questions that are largely validated in middle-class populations. Utilization of interven- tion services for nonwhite and low-income chil- dren with ASD is also lower than for other children with ASD, suggesting that families from diverse backgrounds may be more reliant on family- and faith-based organizations than pro- fessionals to meet their children’s needs (Ennis- Cole et al. 2013).

All national organizations that certify practices as medical homes (American Academy of Family Physicians 2015), thereby enabling them to obtain enhanced payment from insurers, require that practitioners participate in ongoing quality improvement activities. Care related to ASD is an excellent area for practice-based quality improvement efforts. Practices can track and improve their implementation of universal ASD screening in well-child care visits. They can also set up practice systems to

of universal ASD screening in well-child care visits. They can also set up practice systems to ensure that children for whom screening shows concerns receive assess- ments and are linked to intervention services if needed. The AAP’s transition tool kit (American Academy of Pediatrics 2015) includes a self- assessment tool that practitioners can use to obtain a baseline measure and then periodically reuse to assess progress in implementing a transition program.

Future Directions With increasingly high rates of diagnosis of ASD in young children, the medical home model is undergoing several refinements to ensure better care for this population. Autism-specific medical home models that include parents within the prac- tice to provide peer support and guide service enhancements have shown improved patient out- comes and parental satisfaction and fewer unmet needs (Golnik et al. 2012). Another innovative model of implementing medical home for chil- dren

needs (Golnik et al. 2012). Another innovative model of implementing medical home for chil- dren with ASD is the health home, which embeds primary care medical services within a behavioral health setting specifically tailored to meet the needs of children with ASD or intellectual disabil- ities (Fueyo et al. 2015). At the same time, as primary care medical homes are transforming their services to address ASD, other community providers are also striving to meet the needs of this growing

to address ASD, other community providers are also striving to meet the needs of this growing population of children. The Hospital for Special Care in New Britain, Connecticut, was the first ASD specialty service to earn recognition from the National Committee for Quality Assurance. Coordination of care with the pediatric medical home was one component of the recognition process. There are several challenges to improving the ability of pediatric primary care sites to care for children with ASD

challenges to improving the ability of pediatric primary care sites to care for children with ASD within the medical home model. These include the following: lack of train- ing about ASD, reimbursement for time spent in treating and managing children with ASD, and lack of care coordination (Golnik et al. 2009). Training tailored to improve screening of all chil- dren is effective in supporting early detection of children with ASD at the population level (Honigfeld et al. 2012), and

early detection of children with ASD at the population level (Honigfeld et al. 2012), and pediatricians are also eager to receive more training on the ongoing care for children with ASD (Golnik et al. 2009). Ideally such training would begin in medical school and be reinforced with clinical experience in pediatric residency programs, available for the duration of professional careers through continu- ing medical education and required for pediatric maintenance of certification. Multidisciplinary

ing medical education and required for pediatric maintenance of certification. Multidisciplinary training opportunities that include health, educa- tion, behavioral health, and other service pro- viders would enhance the common understanding of optimal services for children with ASD among the professionals who serve them.

Payment models beyond traditional fee for ser- vice, which are increasingly popular in public and private insurance plans, can also facilitate improved medical home care for children with ASD. Bundled payments that provide reimburse- ment for all of the care for chronic conditions would allow child health providers to spend ade- quate time addressing the specific challenges in examining children with ASD as well as family support needs. Insurance plans that pay a per member/per month or

with ASD as well as family support needs. Insurance plans that pay a per member/per month or enhanced capitation pay- ment can support the provision of the extensive care coordination and team participation that med- ical home providers need to optimally support children with ASD and their families.

In sum, the medical home model is ideal for the care of children with ASD. It can ensure early identification, linkage to diagnostic and interven- tion services, and ongoing health maintenance to support children’s participation in therapeutic ser- vices. Enhanced training, payment for time and care coordination, and opportunities to support families can all contribute to increasing the contri- bution of the pediatric primary care medical home to the health and well-being of children with ASD.

The medulla oblongata is the lowest of the three structures of the brain stem (the pons and the mid- brain are the other two), and as such, it participates in the brain stem’s important role in serving as the modulator and integrator of any information exchange between the brain and the proprioceptive and exteroceptive systems of the human body. In the light of the fact that ASD is becoming recog- nized increasingly as a problem of the nervous system integrity involving many functions of the

nized increasingly as a problem of the nervous system integrity involving many functions of the brain, one might predict that the brain stem, in particular medulla oblongata, would have a signif- icant share in the neuropathology of ASD. In fact, earlier postmortem and MRI structural imaging studies on the brain stem found all three structures significantly smaller in individuals with autism (Gaffney et al. 1988; Hashimoto et al. 1993). These studies, however, suffered from the presence of

(Gaffney et al. 1988; Hashimoto et al. 1993). These studies, however, suffered from the presence of confounding variables and were contradicted by concurrent and later studies, even though more recent volumetric studies of both white and gray matter continue to implicate the brain stem (Goldberg et al. 1999; Rodier 2002).

Neurochemical abnormalities in individuals with ASD have served as another link between medulla oblongata and autism. Serotonin is a neu- rotransmitter that is synthesized from tryptophan by neurons in the raphe nuclei of the brain stem reticular formation, which extends along all three structures of the brain stem. Autistic individuals have been found to have elevated whole-blood serotonin 5-HT levels and decreased tryptophan retention, both indicating a decrease in brain sero- tonin binding

levels and decreased tryptophan retention, both indicating a decrease in brain sero- tonin binding (Chugani et al. 1997; Carter et al. 2011; Kaluzna-Czaplinska et al. 2010).

Memantine 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  Definition Memantine: Memantine is a selective blocker of a specific glutamate receptor in the brain. It is approved for the treatment of dementia. It is also used in combination with the cholinesterase inhib- itors such as donepezil. Memantine is presumed to have beneficial effects on Alzheimer’s dementia because of its blockade of this specific glutamate

to have beneficial effects on Alzheimer’s dementia because of its blockade of this specific glutamate receptor. It has not been well studied in children or adults with autism.

Definition The multifaceted process of encoding, storage, and retrieving knowledge of things that we have experienced, imagined, and learned. Memory is often measured using tasks associated with recall, retrieval, or recognition. There are a wide range of memory abilities in individuals with autism spectrum disorder (ASD), with some showing significant impairments across multiple types of memory, and others showing “savant” skills. Most commonly, individuals with ASD have a profile of strengths

and others showing “savant” skills. Most commonly, individuals with ASD have a profile of strengths and weak- nesses that vary across specific subtypes of memory.

The assessment of memory in ASD is carried out by researchers attempting to delineate the pattern of strengths and weaknesses in memory and learn- ing in ASD generally and to understand the psy- chological, neurobiological, and etiological correlates of the atypical memory profiles delin- eated. Memory assessment may also be carried out by practitioners to delineate and understand atypical patterns of learning and memory in indi- viduals with ASD with the aim of developing effective

patterns of learning and memory in indi- viduals with ASD with the aim of developing effective intervention strategies. Very little assess- ment of the neurobiological and etiological corre- lates of atypical memory and learning in ASD has been carried out, and what follows relates exclu- sively to the psychological assessment of memory.

Current Knowledge Memory is involved in the acquisition, storage, retrieval, and everyday use of associations, habits, skills, perceptual images, words, facts, and per- sonal experiences. It is therefore a critical compo- nent of all kinds of learning. People with ASD across the spectrum show certain atypical patterns of memory and learning, including some out- standing strengths as well as certain limitations. In lower functioning individuals with ASD, mod- erate or severe memory limitations

limitations. In lower functioning individuals with ASD, mod- erate or severe memory limitations contribute to clinically significant learning disabilities. At the same time, memory strengths in both lower and higher functioning individuals may be utilized in compensatory learning. It is therefore practically as well as theoretically important to characterize the pattern of memory strengths and weaknesses in people with ASD and to understand how and why uneven memory profiles occur, both gener-

in people with ASD and to understand how and why uneven memory profiles occur, both gener- ally and individually. This in turn requires that appropriate investigative procedures are devel- oped and used by researchers and that appropriate assessment tools are available to practitioners.

A representative selection of experimental research procedures and clinical assessment tools is outlined below. The Assessment of Implicit, or Non-declarative, Learning Many associations, habits, skills, and perceptual images are acquired “implicitly,” that is to say, without conscious awareness or control of what is being learned, although there may be an inten- tion to learn. Moreover, what has been learned implicitly is not generally available to report – hence the term “non-declarative.”

been learned implicitly is not generally available to report – hence the term “non-declarative.” For example, babies work hard at learning to walk, oblivious of the increasingly well-entrenched changes in brain activity and muscle coordination that are occur- ring every time they struggle to their feet and stagger a step or two. Similarly, they uncon- sciously learn the sound system and grammatical rules of their native language without awareness of the rules and regularities they are

grammatical rules of their native language without awareness of the rules and regularities they are acquiring. Because implicit learning takes many forms, it can be experimentally assessed in many ways.

A few examples, all of which have been used in investigative studies of people with ASD, are given below:

*   Conditioning. When used with vulnerable peo- ple, a typical conditioning test might consist of shining a dim light into an individual’s eye just before delivering a small puff of air onto the eyeball (as in a standard test used by opticians) which produces a reflexive blink, and measur- ing how many repetitions of this procedure are needed before the dim light elicits a reflexive blink in the absence of a puff of air.

*   Category Formation. Basic-level categories relating to common objects, actions, or quali- ties are largely acquired implicitly from the first weeks of life onward. There are various theoretical models of how this is achieved. One well-authenticated model involves the (unconscious) acquisition of a prototype (e.g., the most typical form of a “dog” or a “tree”). A commonly used category formation task involves showing the examinee pictures of an imaginary creature (e.g., a “moodle”) defined by

task involves showing the examinee pictures of an imaginary creature (e.g., a “moodle”) defined by a particular set of probabilistic features (e.g., a longish and somewhat crooked nose, a shortish tail) and contrasting moodles with “non-moodles” (which in some ways resemble moodles, but which lack their prototypical fea- tures) by sorting into two piles. Examinees are then asked to try to sort a different set of moodles from the non-moodles with correction from the tester. A critical measure of

set of moodles from the non-moodles with correction from the tester. A critical measure of category formation is whether or not representations of a prototypical moodle are correctly sorted.

*   Sequence Learning (as, e.g., in acquiring motor skills, habitual routines, or other forms of “procedural” learning). A serial response task is commonly used to assess implicit sequence learning. In this task, a stimulus (e.g., an asterisk) appears in one of several locations on a computer screen in a repeating sequence, and participants respond to each appearance by pressing a corresponding key. Learning is demonstrated by a decrease in response time on trials when the locations fol- low

key. Learning is demonstrated by a decrease in response time on trials when the locations fol- low the sequence and by an increase in response time on trials when locations do not follow the sequence.

The Assessment of Explicit, or Declarative, Memory and Learning Words and their meanings, factual knowledge, and the content of personal experiences are at least potentially available to conscious awareness during learning and potentially available to sub- sequent report, hence the term “declarative.” The content of declarative memory may broadly be described as “things that we know that we know,” even if we need some prompting to recover the memory. Whereas experimental tests of implicit

know,” even if we need some prompting to recover the memory. Whereas experimental tests of implicit learning in people with ASD are currently mainly directed toward answering the question “Can people with ASD do this?”, the peaks and troughs of explicit memory in people with ASD are already quite well established (Boucher et al. in press). In brief, the most able individuals with ASD have good vocabularies (even though words may not always be used in entirely typical ways); they have excellent

(even though words may not always be used in entirely typical ways); they have excellent ability to acquire factual knowl- edge, especially relating to topics of special inter- est; but they have some difficulties in recalling personal experiences, especially the more subjec- tive elements, such as how they themselves were feeling at the time. Less able individuals with ASD may have across the board difficulties with declarative memory. Because profiles of declara- tive memory abilities across the

difficulties with declarative memory. Because profiles of declara- tive memory abilities across the spectrum are rel- atively well established, experimental assessments of explicit learning are mainly directed toward answering questions concerning why the patterns of memory peaks and troughs occur and differ across the spectrum.

Declarative memory tests may be designed to investigate critical differences in the kinds of things examinees can or cannot easily remember. Critical differences that have been investigated in people with ASD include:
*   The complexity of the material to be remem- bered (e.g., comparing the ability to recall lists of unrelated words, as opposed to related words, sentences, or stories; and pictures of single objects, as opposed to scenes)

*   The social connotations of the material (e.g., comparing the ability to recognize pictures of faces as opposed to buildings)
*   The extent to which the examinees themselves played a role in the action or event to be remembered (e.g., comparing memory for actions they themselves have carried out as opposed to those the tester carried out)
*   The modality of the material to be remembered (e.g., comparing memory for spoken as opposed to written words)

Other tests are designed to investigate differ- ences in the learning and recalling conditions that may contribute to memory peaks as opposed to memory troughs. For example:

*   “Learning over trials” as opposed to “single trial learning.” *   “Intentional” as opposed to “incidental” learn- ing, that is, tests in which the examinee is instructed to try to remember the pictures they will be shown or the gist of the story they will hear as compared with tests in which they are simply shown some pictures or read a story and then unexpectedly tested for memory of what they have seen or heard.

*   Computer-based as opposed to person-led learning. *   Recognition tests (which of these pictures did you see just now?) as opposed to free recall tests (what objects did you see in the pictures you saw just now?) and “free recall” as compared to “cued recall” tests (one of the pictures was of a kind of fruit/began with the sound “b”).

*   Immediate as opposed to delayed memory tests.  Yet another group of experimental memory tests focuses on the processes that may underlie memory peaks as opposed to memory troughs in ASD. For example:
*   Tests of encoding biases, such as tendencies to encode (register into memory) details of a scene rather than the scene as a whole; or the sound rather than the meaning of heard words

*   Tests of retrieval processes (i.e., the processes by which what has been unconsciously learned or consciously memorized becomes accessible for use) and especially difficulties that people with ASD may have in effortful and strategic forms of memory search where few or no cues or prompts are available as opposed to associa- tively triggered memories or recall in response to informative cues or leading questions

The Assessment of Working Memory “Working memory” involves the ability to main- tain information in short-term memory while simultaneously operating on it in some way. Maintaining information in short-term memory is not by itself a major problem for people with ASD, as is evident from their good rote memory ability. However, the simultaneous maintenance and manipulation of information involve execu- tive control and may be problematic. Experimen- tal assessment of working memory in people with

tive control and may be problematic. Experimen- tal assessment of working memory in people with ASD is at the stage of delineating the kinds of working memory tasks on which people with ASD reliably succeed as compared with those they find significantly difficult.

Some experimental assessments of working memory that have been used with people with ASD are described below:
*   Backward Digit Span. In this task, the exam- inee must register and maintain in short-term memory a serially presented list of, for exam- ple, seven digits, and subsequently report the sequence in reverse order.

*   “N-back Tasks.” In this kind of task, the examinee might be asked to name individual letters successively presented on a screen and to press a response key if the letter on the screen is the same as the last-but-one letter presented or the same as the last-but-two letter presented.

*   Self-ordered Pointing Tasks. In this type of task, the examinee might be shown a set of line drawings of, for example, nine everyday objects located on a 3 × 3 grid. The set is reproduced nine times with no object appearing in the same location twice. The examinee is shown each reproduction in turn and instructed to point to a different item each time, requiring them to hold in mind a cumu- lative list of items already responded to.

*   Prospective Memory Tasks. “Prospective memory” involves “remembering to remem- ber” to do something, for example, remember- ing to take swimming things to school on a Wednesday, to post a birthday card to grandma tomorrow, and to take the saucepan off the hob at a certain time. Experimental tests of prospec- tive memory generally involve giving an instruction such as “remember to press the red button whenever you see an animal on the screen/once a minute” and then giving the examinee some

button whenever you see an animal on the screen/once a minute” and then giving the examinee some other task to be getting on with, such as sorting pictures on the screen by their color. The measure of prospective mem- ory ability is the number of times the original instruction is acted on, either in response to the “event cue” (an animal occurring on the screen) or in response to the “time” cue (an internal estimate of 1 min).

Clinical Assessments Most clinical assessments of memory have been developed for use with adults with medical con- ditions known to be associated with memory impairments or anomalies, such as head injury, stroke, Alzheimer’s disease, or posttraumatic stress disorder. Some of the best-known of these clinical assessments are designed to test a broad range of memory abilities. Others have been designed to assess in greater detail some specific form of memory. Versions of some assessment procedures

to assess in greater detail some specific form of memory. Versions of some assessment procedures developed for adults have subse- quently been developed for use with children. Other procedures have been developed specifi- cally for use with children and are not suitable for use with adults.

A representative selection of clinical assessment procedures, all of which have been used for the assessment of memory in people with ASD, is listed below:

*   The Wechsler Memory Scale, 3rd edition (Wechsler 1997). This widely used test con- sists of subtests assessing immediate auditory and visual-spatial memory and subtests assessing story recall, verbal paired-associate learning, face recognition, and recall of the content of pictures of family scenes, this latter group of subtests being assessed in both imme- diate and delayed recall conditions.

*   The Rivermead Behavioural Memory Test, 3rd edition (Wilson et al. 2008). This test is designed to assess memory using materials and situations resembling everyday situations. So, for example, prospective memory is assessed, as is memory for a route, and learning to associate a name with a face. There is a children’s version of this test: Rivermead Behavioural Memory Test for Children (Wilson et al. 1991).

*   The Doors and People Test of Visual and Ver- bal Recognition and Recall (Baddeley et al. 1994). This test, as its name indicates, is designed to assess person-related as compared to object-related memory, visual as opposed to verbal memory, and recognition as opposed to recall. It can be used with children as well as adults.

*   The California Verbal Learning Test-II (Delis et al. 2000a). This test assesses memory for word lists in a variety of conditions, including comparisons of single trial versus multiple trial learning, immediate versus delayed recall, free recall versus recognition versus cued recall, and “old list” versus “new list” learning. There is a children’s version of this test: The California Verbal Learning Test for Children- II (Delis et al. 2000b).

*   The Autobiographical Memory Interview (Kopelman et al. 1990). This test uses a struc- tured interview format to probe the ability to recall facts and specific incidents from the indi- vidual’s past life, from childhood to recent time.

*   The Benton Face Recognition Test (Benton et al. 1994). In this test, each test item consists of a black and white photograph of a face set above a choice of six other black and white photographs of faces in a variety of orienta- tions, and examinees must indicate whether one or more of these are of the person in the target picture.

*   The Rey-Osterrieth Complex Figure Copying and Memory Test (Osterrieth 1944). As the name of this test suggests, examinees are first asked to copy a complex abstract figure. This is then removed, and the examinee is immedi- ately asked to draw the figure again, this time from memory. Following a delay, they are again asked to draw the figure from memory.

Tests developed specifically for use with chil- dren include: *   The Wide Range Assessment of Memory and Learning (Sheslow and Adams 1990). The content of this test broadly corresponds to the content of the adult-targeted Wechsler Memory Scale (see above).

*   The Children’s Memory Scale (Cohen 1997). The content of this test also corresponds broadly with that of the Wechsler Memory Scale. More specifically, it is described as assessing verbal and visual memory; short delay and long delay memory; recall, recogni- tion, and working memory; and the role of attentional factors in memory.

*   The Children’s Nonword Repetition Test (Gathercole and Baddeley 1996). This test of immediate short-term memory assesses the ability to repeat accurately a series of made- up words of increasing length.

The above list represents only a small selection of clinical assessment procedures, and many more are available and have potential value for better understanding the nature and causes of uneven memory abilities in ASD. A comprehensive list of assessment procedures can be found in Lezak et al. (2004).

Definition The concept of Memory Development may appear to require few introductions, but closer inspection reveals certain complexities that are important to note. For one, the notion of development must not be misunderstood as referring exclusively to the changes in behavior and cognition that accom- pany infancy and early childhood. Although this early stage of development is of key interest, important changes also take place later in life, and since adults come to be the way they are

important changes also take place later in life, and since adults come to be the way they are through their developmental history, they must not be overlooked as a rich source of information about developmental processes. Just as the archeologist is able to infer what events took place in a distant past from the study of ancient treasures, so the developmental psychologist can make certain inferences about the principles of development by taking a close look at adult behavior. What also renders

about the principles of development by taking a close look at adult behavior. What also renders the concept of mem- ory development complicated is the fact that “memory” is far from the transparent phenome- non that our common usage of the term may have us believe. Whether we forget the name of a person we have just been introduced to, the capital of a country we once visited, the location of our car in a car park, or a certain sequence of key strokes on the piano, we are always quick to blame

car in a car park, or a certain sequence of key strokes on the piano, we are always quick to blame our memory for our failures. Yet, decades of research have shown that such instances of forgetting are not the result of the failures of a single memory system or process but of the imper- fections of a number of such systems and pro- cesses that each contributes in specific ways to our ability to learn from the past. It is beyond the scope of this entry to provide a summary of the various

to learn from the past. It is beyond the scope of this entry to provide a summary of the various approaches that have been taken to carv- ing the nature of memory at its joints (for over- views relevant to the study of autism, see Gardiner 2008 and Mottron et al. 2008), but two distinc- tions require a brief comment. The first is the division between procedural and declarative memory. Procedural memory describes memory for sequences of motor behaviors that can be learned and expressed without

memory describes memory for sequences of motor behaviors that can be learned and expressed without the necessary involvement of conscious awareness. Declarative memory, by contrast, describes memory for infor- mation that is learned and retrieved under the influence of conscious awareness. This entry will only concern issues relating to declarative mem- ory development since the vast majority of research in autism has addressed this domain. The second distinction is based on the observation by

research in autism has addressed this domain. The second distinction is based on the observation by Tulving (1985) that not all of our declarative memories are associated with the same kind of conscious experience. The memory of the name of our childhood primary school, for instance, is qualitatively different from that of our first day there. The former is associated with a noetic sense of awareness (knowing) that is relatively void of a feeling of personal belonging. It characterizes retrieval

(knowing) that is relatively void of a feeling of personal belonging. It characterizes retrieval from our semantic memory system that constitutes a store of impersonal facts and knowl- edge about the world. Autonoetic awareness (remembering), by contrast, accompanies retrieval from our episodic memory system, which encompasses all those memories that revolve around our “self” in the past. These dis- tinctions are critical when considering how mem- ory develops since the lack of language during

tinctions are critical when considering how mem- ory develops since the lack of language during the earliest stages of development makes it impossi- ble for infants to “declare” what they remember and how they remember it.

As a result, the study of memory development in very young children is complicated, and when language development follows an atypical trajectory, such as in the case of autism, matters become even more intricate. It is thus perhaps not surprising that the study of memory development in autism has adopted the archeological route of focusing on adults as a source of information. The patterning of memory strengths and weaknesses in older groups has provided important clues about what role distur-

strengths and weaknesses in older groups has provided important clues about what role distur- bances in memory development may play in the origin and/or maintenance of the clinically defin- ing manifestations of autism, and together with advances in the methods for studying how mem- ory matures during the first few years of life, these clues are beginning to open promising new research avenues for the near future.

Historical Background Memory research in autism has a long history that begins with the seminal work of Beate Hermelin and Neil O’Connor in the 1960s (Hermelin and O’Connor 1970). At that time, cognitive approaches and associated computer analogies of the mind/brain relation dominated the field of psychology, and autism was finally beginning to be accepted as a neurodevelopmental disorder rather than the consequence of pathological par- enting. In the context of these developments, Hermelin and

the consequence of pathological par- enting. In the context of these developments, Hermelin and O’Connor set about to determine how the autistic mind processed and stored infor- mation, and they soon made a discovery that remains valid up to the present day. In a series of experiments, they demonstrated that children with autism did not benefit from “meaning” when trying to remember sets of stimuli. For instance, whereas typically developed children would remember grammatically correct sentences

For instance, whereas typically developed children would remember grammatically correct sentences far better than random sequences of words, children with autism would remember both sets of stimuli equally well. Similarly, children with autism did not demonstrate a mnemonic advantage for mean- ingfully related as compared to unrelated words or pictures, while children without autism reliably did. Together these findings led Hermelin and O’Connor (1970) to conclude that autism was characterized

Together these findings led Hermelin and O’Connor (1970) to conclude that autism was characterized by an impairment in processing information meaningfully and numerous subse- quent studies have lent support to this suggestion. Another early discovery was the observation that tests of free recall pose disproportionate difficul- ties for individuals with autism. Free recall relies almost exclusively on the operations of the epi- sodic memory system and requires the retrieval of previously learned

on the operations of the epi- sodic memory system and requires the retrieval of previously learned information with only minimal support (e.g., “Tell me all the words you can remember”). Boucher and Warrington (1976) showed that children with autism were signifi- cantly impaired in recalling namable pictures, written words, and spoken words despite performing similarly to comparison children when retrieval cues were provided at test (e.g., “Can you remember something you sit on” for the item

retrieval cues were provided at test (e.g., “Can you remember something you sit on” for the item “stool”). Importantly, this pattern highlighted a parallel with patients who suffered damage to an area of the brain known as the hippocampus, leading Boucher and colleagues to conclude that this medial temporal lobe (MTL) structure was likely to play a critical role in the neurodevelopmental origins of autism (see Mayes and Boucher 2008 for a recent review of the relevant evidence). As ahead of

of autism (see Mayes and Boucher 2008 for a recent review of the relevant evidence). As ahead of their time as these early pioneers were, their insights and discoveries were soon to fall by the wayside in favor of other conceptual developments in the field. The discovery that chil- dren with autism lacked a “theory of mind” (Baron-Cohen et al. 1985) began to dominate the search for the developmental origins of the disor- der during the 1980s and the formulation of the weak central coherence

origins of the disor- der during the 1980s and the formulation of the weak central coherence (WCC) theory around the same time soon appeared to provide an elegant explanation for the findings by Hermelin and O’Connor (1970) in terms of a detail-focused rather than a holistic and meaning-focused pro- cessing style in autism (e.g., Shah and Frith 1993). In addition, it was thought that the kind of mem- ory difficulties experienced by individuals with autism could not possibly contribute causally to

ory difficulties experienced by individuals with autism could not possibly contribute causally to the development of the disorder since the memory processes relevant to these difficulties (i.e., pri- marily episodic processes) were widely thought not to mature until the age of 3–4 years in the course of typical development. In other words, there was a widespread conviction that memory difficulties emerged after the clinically defining symptoms of the disorder. For the next 20 years, therefore, the

after the clinically defining symptoms of the disorder. For the next 20 years, therefore, the dominant topic of discussion was the nature of the relationship between the detail- focused processing style of individuals with autism and their difficulty in understanding the minds of others. Research on memory merely continued at the fringes of scientific awareness. Today, however, developments in both the autism memory literature and the mainstream memory development literature are beginning to draw

the autism memory literature and the mainstream memory development literature are beginning to draw attention to the possibility that atypical learning and memory processes may play a much more important role in the development of autism than originally thought.

Current Knowledge In order to understand why interest in the learning and memory difficulties of individuals with autism is growing, it is necessary to provide an overview of the developments in two distinct lit- eratures – that concerning the patterning of mem- ory strengths and weaknesses in autism and that concerning how memory typically develops dur- ing the first years of life.

Memory Strengths and Weaknesses in Autism As already alluded to, our current knowledge about memory function in autism stems primarily from studies of children, adolescents, and adults who have sufficient language and general intellectual abilities to cope with the demands of declarative memory tasks. Work with these relatively high-functioning individuals generally confirms the original conclusions by Hermelin and O’Connor (1970) and Boucher and col- leagues (e.g., Boucher and Warrington 1976)

by Hermelin and O’Connor (1970) and Boucher and col- leagues (e.g., Boucher and Warrington 1976) that individuals with autism experience difficul- ties in drawing on meaning to facilitate memory and that their performance on free recall measures is disproportionately attenuated compared to supported test procedures such as cued recall and recognition. Close scrutiny of these phenomena in recent years, however, has led to a more refined understanding of why a difficulty in drawing on meaning should

however, has led to a more refined understanding of why a difficulty in drawing on meaning should coincide with disproportionate difficulties in free recall, and three sets of obser- vations have proven particularly informative in this context.

First, it is now widely accepted that autism is characterized by impairments in epi- sodic memory that go beyond a disproportionate difficulty with free recall procedures. For instance, when individuals with autism are asked to describe the quality of their memories on tests of recognition memory (e.g., “Have you seen X before?”), they are less likely than comparison participants to recollect specific details about the study episode (e.g., Bowler et al. 2007). Individ- uals with autism also

specific details about the study episode (e.g., Bowler et al. 2007). Individ- uals with autism also struggle to recall contextual details such as when, where, and how they learned something when they are directly tested for such details (e.g., Bowler et al. 2004; Poirier et al. 2011), and they often adopt a third-person rather than a first-person perspective when recalling autobiographical events (Lind and Bowler 2010).

The second influential discovery is that, contrary to the original conclusions by Hermelin and O’Connor (1970), individuals with autism appear to draw on “meaning” to facilitate memory under several circumstances. For instance, con- ceptual relations between words (e.g., crop- grain) have been shown to promote memory in autism as much as in comparison groups when recognition procedures (“Did you see the word apple earlier?”) rather than free recall procedures (“What words did you see earlier?”)

the word apple earlier?”) rather than free recall procedures (“What words did you see earlier?”) are used (e.g., Bowler et al. 2008) or when attention is drawn to such relations during study (Gaigg et al. 2008; Mottron et al. 2001). In addition, individuals with autism are as likely as comparison partici- pants to experience false memories of words that are meaningfully related to a set of studied words (e.g., night, pillow, tired, bed, dream. . .for a false memory of sleep) (Bowler et al.

words (e.g., night, pillow, tired, bed, dream. . .for a false memory of sleep) (Bowler et al. 2000; Hillier et al. 2007), which suggests not only that the concept of “meaning” is too broad to capture what individ- uals with autism do not process effectively in the service of memory but also that memory difficul- ties in this disorder are unlikely to be a reflection of a local processing style as proposed by the WCC theory.

The third development that has con- tributed to our understanding of the patterning of memory strengths and weaknesses in autism is the complex information processing framework developed by Minshew and colleagues (see Williams et al. 2008), which notes that memory difficulties in this disorder become more pro- nounced as tasks become informationally more complex. For instance, Minshew and Goldstein (2001) found that individuals with autism demon- strate a progressively more pronounced memory

(2001) found that individuals with autism demon- strate a progressively more pronounced memory difficulty for materials that increase in semantic and syntactic complexity from sequences of let- ters to sequences of words and sentences. Although these observations are consistent with Hermelin and O’Connor’s original observations, Minshew and Goldstein (2001) also found that when asked to learn the path through a maze, individuals with autism compared to those with- out performed progressively

path through a maze, individuals with autism compared to those with- out performed progressively worse as the number of choice points in the maze increased, and this finding is less amenable to an explanation in terms of “meaning.” Taken together, therefore, these findings favor the view that it is “complexity” rather than “meaning” that lies at the root of the memory difficulties in autism, which is also con- sistent with neuropsychological evidence impli- cating the frontal lobes in autism (see

also con- sistent with neuropsychological evidence impli- cating the frontal lobes in autism (see Williams et al. 2008 for a review).

The Mainstream Literature Around the time of the first systematic investiga- tions of memory in autism, Hunt and Einstein (1981) proposed that the efficacy of memory is principally dependent on the processing of two types of information – item-specific information and relational information. Item-specific informa- tion is information specific to the individual ele- ments of a to-be-remembered set of materials such as the fact that a banana is yellow, that it is sweet, that it is soft textured, and

materials such as the fact that a banana is yellow, that it is sweet, that it is soft textured, and that it belongs to the category of fruit. Relational information, by con- trast, is information that defines the relations between elements such as the fact that a banana is similar to a prune. Critically, relational infor- mation presupposes item-specific information. One can only relate banana and prune if relevant item-specific knowledge about the banana and prune is available. In other words,

prune if relevant item-specific knowledge about the banana and prune is available. In other words, the processing of relational information is computationally more complex because it requires (1) the retrieval of item-specific information about elements of expe- rience and (2) the formulation (not necessarily explicitly) of a relation between elements on the basis of such item-specific knowledge. Bowler and Gaigg (2008) have argued that a definition of Minshew’s “complexity” in terms of

Bowler and Gaigg (2008) have argued that a definition of Minshew’s “complexity” in terms of item-specific (simple) and relational (complex) information provides a powerful tool for explaining the patterning of memory strengths and weaknesses in autism (see also Bowler et al. 2011 for an up-to-date review).

For one, the dis- tinction between relational and item-specific pro- cessing is widely thought to parallel that between episodic and semantic memory. More importantly, the distinction also helps to resolve the complex pattern in which “meaning” modulates memory in autism. The observations from memory illusion paradigms are particularly well suited to illustrate this point. In such paradigms, participants study lists of words of meaningful associates of one nonpresented item (e.g., night,

participants study lists of words of meaningful associates of one nonpresented item (e.g., night, pillow, tired, bed, dream. . .for sleep). Individuals with autism tend to recall fewer words from to-be-remembered lists in such tasks, but they nevertheless also fall prey to erroneously recalling the nonstudied target words (Bowler et al. 2000). This apparent paradox is explained by the fact that veridical recall of list items depends on the effective processing of the relations between the items

recall of list items depends on the effective processing of the relations between the items on the list, which, as noted earlier, also involves the bringing to mind of item-specific information about each individual word. False recall of the critical item, on the other hand, is largely the result of it being brought to mind by each of the studied words on the list. The critical word, in other words, constitutes part of the item-specific knowledge one has about the list items. Although this

words, constitutes part of the item-specific knowledge one has about the list items. Although this interpretation may seem contrived, it receives support from direct tests of the hypothesis that relational but not item-specific processing is compromised in autism (e.g., Gaigg et al. 2008) and from the neuroscientific literature (see Eichenbaum 2004; Mayes and Boucher 2008; Williams et al. 2008 for relevant reviews).

As noted earlier, until the 1980s, it was widely assumed that children were unable to form long- lasting declarative memories until the age of around 3–4 years. This view was mainly based on the fact that adults can rarely remember events from the first years of life, which seemed to sug- gest that no such event memories (i.e., episodic memories) are formed during early childhood. Just as archeologists can make mistakes in infer- ring the origin of certain artifacts, however, so developmental

can make mistakes in infer- ring the origin of certain artifacts, however, so developmental theorists can draw erroneous con- clusions about developmental processes on the basis of adult behavior, and the domain of mem- ory development provides a case in point. As it turns out, infants as young as 9 months can remember a surprising amount when tested with appropriate procedures (see Bauer 2006), and the most relevant to the study of autism is the obser- vation that typical infants between 9 and

the most relevant to the study of autism is the obser- vation that typical infants between 9 and 18 months rapidly acquire abilities that are indic- ative of relational memory processes. For instance, between 9 and 18 months, infants become increasingly proficient at deferred imita- tion tasks. In such tasks, an experimenter typically demonstrates a random sequence of actions such as banging a metal ring on a stick, then spinning the ring, and finally balancing it on a block. Fol- lowing a delay

ring on a stick, then spinning the ring, and finally balancing it on a block. Fol- lowing a delay of hours or even weeks, the infant who observed this sequence is presented with the same objects and encouraged to use them. Strik- ingly, by age 9 months, infants not only imitate the actions but they imitate them significantly above chance in the order in which they were demonstrated. Since the ordering of events in memory is widely regarded as a product of epi- sodic memory and relational

ordering of events in memory is widely regarded as a product of epi- sodic memory and relational processes (in this case temporal relations are processed), this pro- vides strong support for the idea that relational memory processes begin to develop toward the latter stages of the first year of life (Bauer 2006). Additional evidence for this suggestion stems from intricately designed eye-tracking studies that assess novelty preferences in infants through visual paired comparison tasks. In such

studies that assess novelty preferences in infants through visual paired comparison tasks. In such tasks, infants are first presented with a series of pictures, and after a short delay, they view the same pic- tures again alongside new and unfamiliar ones. In standard versions of this task, infants as young as 6 months demonstrate novelty preferences by visu- ally exploring the novel picture for longer which indicates that they recognize the familiar one. Importantly, 6–9-month-olds do not

for longer which indicates that they recognize the familiar one. Importantly, 6–9-month-olds do not demonstrate novelty preferences when tested in a different room to that in which the pictures were first seen. Such context dependence is thought to reflect a relative immaturity in relational processing since memory representations of the pictures are inflex- ibly bound to the memory representations of the context in which they were presented. The great advantage of mature relational processes is

of the context in which they were presented. The great advantage of mature relational processes is that they endow us with the ability to flexibly combine and recombine elements of past experiences, and this flexibility begins toemergeby about 12 months when infants begin to show novelty preference irrespective of context changes (see Jones and Herbert 2006; Jones et al. 2011 for further details). Importantly, the first reliable behavioral markers of autism are not evident until around 18–24

Importantly, the first reliable behavioral markers of autism are not evident until around 18–24 months, considerably later than the period during which relational processing capacities emerge in typical development.

Future Directions The above overview is incomplete and over- simplified but nevertheless demonstrates that it is conceivable that memory atypicalities in autism emerge before the clinically defining features of the condition. In itself, this does not necessarily indicate that memory abnormalities are causally responsible

specialized ASD program within special education was first offered in 1989 at Margaret Drive Special School. Between 2004 and 2006, three SPED schools that provide specialized programs only for students with ASD diagnoses were established to meet rising demands in enrolment applications. These are the Pathlight School, the Eden School, and the St Andrew’s Autism School. These schools complement the other SPED schools, most of which have ASD-specific programs or educational provisions for students

other SPED schools, most of which have ASD-specific programs or educational provisions for students with ASD. As part of the continual effort in enhancing accessibility to spe- cial education, more SPED schools are being established. Since 2018, three new ASD-specific SPED schools have begun operations, serving stu- dents with ASD with higher support needs, and another four ASD-specific SPED schools are planned from 2021 (Rajah 2019). There is consid- erable variation over the specific approaches

are planned from 2021 (Rajah 2019). There is consid- erable variation over the specific approaches or methods being implemented within the different SPED schools. However, some key characteristics that are shared include a customized structured curriculum, higher teacher-student ratio, collabora- tion with parents, specialized support from allied educational and health professionals, and a focus on developing communication, functional daily living, and social-emotional skills, with the aim of

on developing communication, functional daily living, and social-emotional skills, with the aim of promoting life-long independence. Specifically, the Pathlight School was set up by the Autism Resource Centre with government funding for school-going children with ASD who are able to access the mainstream National Curriculum with support, within a specialized learning environment. Apart from school-based education for its primary school students, the Pathlight School also offers a satellite

education for its primary school students, the Pathlight School also offers a satellite school model for physical, social, and academic integra- tion with mainstream school students for its sec- ondary school students. Pathlight students attend school at the Satellite Partnership (Satellite Part- nership program was introduced by the Ministry of Education to improve inclusivity and facilitate the interaction between students from SPED schools and students from 19 selected mainstream schools)

interaction between students from SPED schools and students from 19 selected mainstream schools) mainstream schools daily (physical inte- gration) and interact socially with their students during recess and selected school events (social integration). Selected students, who have been assessed to be ready, join the mainstream classes for certain lessons (academic integration). This model provides for purposeful and meaningful, but gradual and individualized, participation in mainstream school

for purposeful and meaningful, but gradual and individualized, participation in mainstream school and social integration.

SPED students in the other SPED schools also access meaningful participation and frequent interactions with their peers in mainstream schools, with the program targeted at vocational preparation, and transition to post-school inde- pendent living, learning, and working opportuni- ties. The provision of Transition Planning Coordinators (TPCs) and Job Coaches to every SPED school, serving students aged 13 and above, supports the co-development and enact- ment of Individual Transition Plans

aged 13 and above, supports the co-development and enact- ment of Individual Transition Plans together with the student, parents, and school personnel. The professional development for all staff, includ- ing that for TPCs, Job Coaches, and teachers, is funded by the government over and above the government’s funding for all SPED school staff, operations, and infrastructure.

Services and Support for Adults with ASD The exact number of adults with ASD in Singa- pore is currently not known, but based on an estimated rate of 1 in 167 Singaporeans having ASD, there are likely approximately 18,000 Sin- gaporean adults with ASD (Tan 2011). However, only a small number of these individuals receive specialist support or training in adult centers. Sim- ilar to most other developed countries, it is increasingly being recognized that support and services for adults with ASD

countries, it is increasingly being recognized that support and services for adults with ASD are very limited in Singapore. There is a current focus on the employ- ment of adults with ASD. The Employability and Employment Centre (E2C) was established in 2012 to equip individuals with mild to moderate ASD with work skills and to support them in their efforts to secure and remain in employment. There is also a small but growing number of day activity centers providing specialized care for adults

is also a small but growing number of day activity centers providing specialized care for adults with ASD and intellectual disabilities, such as the St Andrew’s Autism Centre, the Eden Centre for Adults, and the Thye Hua Kwan Autism Centre. Aside from these ASD-specific initiatives, adults with ASD with comorbid intellectual disability can also access other day activity centers and sheltered workshops for individuals with intellec- tual disability. Although adults with disabilities typically

for individuals with intellec- tual disability. Although adults with disabilities typically live with their families, some require residential sup- port when their parents or family are unable to care for them (Poon 2013). Many autistic adults requiring residential facilities have typically been placed in homes for adults with intellectual dis- abilities. In 2018, the St Andrew’s Adult Home, the first specialized residential facility with a capacity of 200 residents, began operations to meet the

specialized residential facility with a capacity of 200 residents, began operations to meet the needs of adults with autism.

Research and Learning/Professional Development Research The first wave of research relating to ASD in Singapore in the 1990s and early 2000s focused on intervention approaches, including computer- aided interventions (Bernard-Opitz et al. 1999, 2001b, 2004; Chen and Bernard-Opitz 1993) and structured playgroups (Bernard-Opitz et al. 2004; Kok et al. 2002). Research in ASD in Singapore has grown considerably with strong collabora- tions forged between researchers from public organizations,

considerably with strong collabora- tions forged between researchers from public organizations, clinicians, and leading academic institutions (i.e., National University of Singa- pore, NUS; National Institute of Education (NIE) at the Nanyang Technological University; Duke-NUS) to investigate a range of research areas and questions, including diagnosis (i.e., Sung et al. 2018; Wong and Koh 2016), early identification of children with ASD (i.e., Koh et al. 2014); early intervention (i.e., Poon

early identification of children with ASD (i.e., Koh et al. 2014); early intervention (i.e., Poon and Bull 2016; Lim et al. 2007); the assessment of learning, functional level, and experiences of chil- dren with ASD in schools (Aljunied and Frederickson 2011; Aljunied and Frederickson 2013; Poon 2011; Poon et al. 2014); emotional and mental health comorbidity with a particular focus on anxiety difficulties and psychopharma- cology (i.e., Magiati et al. 2014, 2016; Ooi et al. 2011, 2014; Poon et

and psychopharma- cology (i.e., Magiati et al. 2014, 2016; Ooi et al. 2011, 2014; Poon et al. 2014; Sung et al. 2010, 2011; Zainal et al. 2014; Zainal and Magiati 2019); the role and perspectives of families of individuals with ASD (i.e., Lai et al. 2015; Moh and Magiati 2012; Poon 2013; Poon et al. 2013a; Xue et al. 2014); the incorporation of technology in intervention and the role of screen time on behavioral difficulties (Cabibihan et al. 2013); the enlistment of autistic youth in National

on behavioral difficulties (Cabibihan et al. 2013); the enlistment of autistic youth in National Ser- vice (Chay et al. 2020).

Training and Professional Development In 2019, Singapore became the first Asian country to host the Asia Pacific Autism Congress (APAC) outside of Australia. This not only encapsulated the strong bilateral relationship between the two coun- tries in terms of collaboration in research but also represented the maturity in research capabilities of the community in Singapore. The congress was organized by the Autism Resource Centre (Singapore) with the strong support from members of the Autism

by the Autism Resource Centre (Singapore) with the strong support from members of the Autism Network Singapore. The organizing and scientific committee members included part- ners from the local and international autism com- munity including individuals on the autism spectrum. International and Asia-based speakers, autistic people and their families, researchers, edu- cators, clinicians, and researchers shared their work and experiences in the congress. The conference theme “Thriving with

researchers shared their work and experiences in the congress. The conference theme “Thriving with Autism” (source: www.apac. autismcongress.org/2019/) aptly reflected the aspi- ration in research engagement towards maximizing the quality of life of all individuals with autism and their families in Singapore, and beyond.

Social Policy and Advocacy Services for early intervention and special educa- tion are provided collaboratively between the government, VWOs, and the larger community, including corporations (i.e., “many helping hands” approach; Ho 2007). As such, volunteers play a large part in the service provision for individuals with ASD in roles such as guidance in the VWO governance boards, assistance in orga- nizing fund-raising and other events, and support in the day-to-day operations of various

in orga- nizing fund-raising and other events, and support in the day-to-day operations of various centers. The Autism Association of Singapore was established in 1992 by parents and currently operates two EIPIC centers, one special school and one Day Activity Center (DAC) for adults. Likewise, the Autism Resource Centre, established in 1999, has similar roots and cur- rently operates an EIPIC center, a special school, the Employability and Employment Centre, an autism library, and an autism

center, a special school, the Employability and Employment Centre, an autism library, and an autism training and con- sultancy service that offers more than 2000 train- ing seats per year. As from 2015, a small, but strong and growing, autistic community has emerged with several autistic adults taking lead- ership and advocacy roles and providing educa- tion, leadership, and much needed voices for autistic people in the country. Family members also feature prominently as advocates. For exam-

for autistic people in the country. Family members also feature prominently as advocates. For exam- ple, a parent who is also a journalist has published two collections of articles, one focus- ing on Singaporean families’ perspectives and another on the independence of autistic adults, both with the aim of raising awareness of autism (Tan 2010, 2018). Parent advocates have also spearheaded various parent support groups in school communities, via online platforms and through social media.

various parent support groups in school communities, via online platforms and through social media. Disability support offices (DSOs) have been established in publicly funded institutes of higher learning (institutes of higher learning in Singapore includes universities, polytechnics, the Institute of Technical Education, private education, and the arts institutions, under the purview of the Division of Higher Education Group of the Ministry of Education) since 2014 to support students with

of Higher Education Group of the Ministry of Education) since 2014 to support students with special needs, with services expanded to cater for an increasing number of autistic students entering these higher learning institutions. Insti- tutes of higher learning have also incorporated modules specific to autism, such as for psychol- ogy undergraduates at the National University of Singapore and for educators at the National Insti- tute of Education.

Current Issues and Future Directions Notwithstanding the country’s brief history, there has been considerable effort to develop services and supportive infrastructures for individuals with disabilities, including those with ASD, and their families. Although considerable progress has been made, there continues to be a number of areas for further growth. There is a need to further raise the bar for the quality of services for school- aged children, adolescents, and undiagnosed adults with ASD.

the quality of services for school- aged children, adolescents, and undiagnosed adults with ASD. With increasing numbers of students with ASD accessing the mainstream edu- cation system, there is a pressing need to improve on the inclusion and support for these individuals, including looking at ways to diversify the contin- uum of provisions available to students with ASD (Enabling Masterplan 2007). Caregivers and fam- ilies continue to report long wait times, particu- larly for post-school

2007). Caregivers and fam- ilies continue to report long wait times, particu- larly for post-school services. More resources need to be injected to develop more and better quality services to support those in higher insti- tutes of learning (such as the polytechnics and universities), those in the workplace, and those who may not be suitable for independent employ- ment. More services need to be developed in the areas of diagnostic services in the adult population and in mental health and

be developed in the areas of diagnostic services in the adult population and in mental health and emotional support ser- vices throughout the life-span for the autistic individuals.

There is also a need to further align and syn- ergize the efforts of schools, professionals, researchers, and other service providers in order to maximize the potential of the individuals with ASD and to enhance their quality of life. While the number of services and centers has increased considerably, the quality and impact of interven- tion and educational approaches remain under- evaluated. Few programs can clearly document the empirical evidence on which their develop- ment and

Few programs can clearly document the empirical evidence on which their develop- ment and implementation are based, with the exception of the structured teaching approach, which appears to be a component shared across most intervention settings. For this reason, there have been government-initiated and government- funded efforts to improve and standardize the quality of early intervention services offered. These efforts have taken the form of a study to describe the state of services (i.e.,

offered. These efforts have taken the form of a study to describe the state of services (i.e., EIPIC baseline study), a consultancy service to improve the qual- ity of services (i.e., EIPIC Consultancy Project), and an ongoing evaluation study to systematically measure the outcomes in addition to the child, family, and intervention factors associated with the progress of the children receiving EIPIC interventions. Separately, the Autism Resource Centre’s Early Intervention Programme has

EIPIC interventions. Separately, the Autism Resource Centre’s Early Intervention Programme has embarked on an international accreditation by the United King- dom’s National Autistic Society, which provides a rigorous quality assurance service to autism- focused programs around the world. Finally, another area for development that has been highlighted includes providing greater support for the autistic individuals during transition phases across the developmental life-span (e.g., Poon and Lim

individuals during transition phases across the developmental life-span (e.g., Poon and Lim 2012; EM Steering Committee 2012). To address this, a number of programs are currently in progress, such as a project seeking to support the transition of children with ASD from preschool to primary schools, as well as a hospital-based early intervention program for caregivers of recently diagnosed children with ASD (Temasek Cares 2013). One of the restructured hospitals, KKH, has initiated a home-based

with ASD (Temasek Cares 2013). One of the restructured hospitals, KKH, has initiated a home-based program for children with ASD and their families (SAFE; Support for Autism through Family Empowerment), which aims to provide families of newly diagnosed children with the knowledge of ASD, information on available ser- vices, and parenting/management strategies (Lim, personal communication). The national approach spearheaded by the Enabling Masterplans has good potential to con- tinue to set

national approach spearheaded by the Enabling Masterplans has good potential to con- tinue to set directions for the management and coordination of services, and the autism-specific Masterplan currently being developed will likely put autism more firmly and specifically on the national agenda, bringing about pertinent and sus- tainable improvements in the next 10 years. It is important that the voices and needs of the individ- uals with ASD and their families take a central place in the

the voices and needs of the individ- uals with ASD and their families take a central place in the implementation of the agenda set by the Enabling and Autism Masterplans. Finally, to ensure that the understanding of the needs of this population is current and robust, there is an increasing need to further continue to promote collaborations between autistic people, their fam- ilies, schools, professionals, and researchers.

Single-Nucleotide Polymorphism A. Jeremy Willsey and Montana T. Morris Department of Psychiatry, UCSF Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, CA, USA

UCSF Weill Institute for Neurosciences, San Francisco, CA, USA Synonyms Single-nucleotide variation; SNP Definition A single-nucleotide polymorphism (SNP, pro- nounced “snip”) is the variation in a single base of DNA that is present in at least 1% of the population (i.e., a common variant). SNPs are a subset of single-nucleotide variants (SNVs); SNVs include both common (SNPs) and rare (<1% frequency in the population) variants of a single base pair. SNP usually refers to a substitu- tion (when

in the population) variants of a single base pair. SNP usually refers to a substitu- tion (when a different base pair is present, e.g., ATCCA instead of ATGCA) rather than a single base insertion (e.g., ATGACA) or a single base deletion (e.g., ATGCA). Confusingly, however, the abbreviation “SNP” is also sometimes used to describe insertions or deletions of a few bases of DNA or rare single-nucleotide polymorphisms (which are technically SNVs). Every human has about three million SNPs (and an

polymorphisms (which are technically SNVs). Every human has about three million SNPs (and an additional 150,000 rare SNVs). Therefore, every individual has a unique combination of SNPs (except for identical twins). This diversity means that SNPs can be used to identify a person from a forensic sample (DNA fingerprinting), to identify family relationships, and to examine the ancestral origins of an individual (e.g., North African, Central European, East Asian). Human SNPs are recorded in several

individual (e.g., North African, Central European, East Asian). Human SNPs are recorded in several databases, including the NCBI “dbSNP” database (http:// www.ncbi.nlm.nih.gov/projects/SNP/). Each SNP has a unique identifier beginning with the letters “rs” (e.g., rs3572840). For many SNPs, ancestry information is given and a small number includes clinical information about known disease associa- tions. There are various other resources that lever- age SNPs to provide information about an

tions. There are various other resources that lever- age SNPs to provide information about an individual’s traits or ancestry, including private companies that provide individualized sequencing services for customers. SNPs may be found in coding or noncoding regions of the genome. Some SNPs play roles in regulating the expression of genes (expression quantitative trait loci or eQTLs) and the methyla- tion of DNA (methylation quantitative trait loci or meQTLs). Particular SNPs may increase or

tion of DNA (methylation quantitative trait loci or meQTLs). Particular SNPs may increase or decrease risk of a particular disease. Alternatively, a SNP may also act as a marker for a nearby variant that contributes risk or resilience. Therefore, SNPs are commonly used in genetic studies that look for common variants associated with disease, such as genome-wide association studies (GWAS). To date, GWAS studies of ASD have been lim- ited in their ability to definitively identify SNPs significantly

GWAS studies of ASD have been lim- ited in their ability to definitively identify SNPs significantly associated with ASD risk. Given that 50% of ASD risk is estimated to be due to common inherited mutations, including SNPs, these negative findings are almost certainly due to a lack of statis- tical power. Therefore, as cohort sizes (and hence power) increase, significantly associated SNPs are expected to be identified.

Single-Subject Study Mark Groskreutz and Brian Reichow Special Education and Reading Department, The Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA
Child Study Center, Yale University School of Medicine, New Haven, CT, USA Anita Zucker Center for Excellence in Early Childhood Studies, University of Florida, Gainesville, FL, USA

Definition Single-subject research (sometimes referred to as single-case research) refers to a collection of experimental research designs (e.g., multiple baseline, withdrawal, alternating treatment; see references for list of guides) that can be used to measure the effects of an intervention in individ- ual participants. By manipulating the experimen- tal conditions, each individual serves as their own control, enabling scientists to infer causal relations.

Historical Background Early examples of single-subject research can be found in research in psychology and physiology conducted in the nineteenth and early twentieth centuries. Scientists such as Fechner, Ebbinghaus, and Pavlov all used individual research subjects and repeated measure over time in their experi- ments (Barlow et al. 2009). With this focus on the individual and frequent measurement, the researchers could identify variables related to changes in subject performance. These

the researchers could identify variables related to changes in subject performance. These character- istics of frequent measurement, repeated over time at the individual level, are the hallmark of single- subject design because they allow each subject (or participant in studies with humans) to serve as their own control. The generality of findings relevant for individuals is then examined with additional subjects to identify fundamental vari- ables responsible for the phenomena under study.

Burrhus Frederick Skinner’s research was largely focused on single-subject methodology and resulted in an extensive body of findings related to learning and behavior. Skinner conducted thousands of experiments showing how certain variables resulted in consistent effects on learning and performance (see Ferster and Skinner 1957; Skinner 1938) and, more than any other person, is responsible for the development of the laws of behavior central to fields of the experimental analysis of behavior and

development of the laws of behavior central to fields of the experimental analysis of behavior and applied behavior analysis (ABA; see Baer et al. 1968). Since Skinner and other early scientists pioneered single-subject research, others have continued to use and advocate for the use of single-subject research methodology as the primary way to iden- tify specific variables related to individual’s suc- cess and lack of progress. The logic of single-subject design is focused on establishing a

suc- cess and lack of progress. The logic of single-subject design is focused on establishing a predictable trend in behavior, such that if any changes in behavior are noted, they can be attributed to changes made in inter- ventions at the time of the change in behavior. By establishing this predictable trend, or baseline, an individual can serve as his/her own control, elim- inating the need for a comparison group or other control procedures. To establish this baseline, single-subject design

a comparison group or other control procedures. To establish this baseline, single-subject design uses frequent data collection to track performance on target behaviors for a single individual, such as initiating conversation, on-task behavior, or occurrence of inappropriate behaviors. As data are collected, the data can then be summarized in graphical form, which provides a clear illustration of trends in the target behavior over time; trends can be improving, deteriorating, or stabile (i.e.,

trends in the target behavior over time; trends can be improving, deteriorating, or stabile (i.e., no change). Once these trends are established, then changes can be made, if neces- sary, to improve performance. Following changes, comparisons can be made between pre- and post- change levels in performance.

Current Knowledge Research studies including individuals with autism spectrum disorders (ASDs and other populations) are often separated into two research paradigms, group-design and single-subject research. Notably, each design is appropriate for some research questions and not others. At times, it has been incorrectly noted that one research methodology is superior to another. This perspec- tive fails to account for the nature of the questions being asked. Broadly speaking, group research is

fails to account for the nature of the questions being asked. Broadly speaking, group research is designed to answer what is the average effect of a procedure on a group of individuals. Single- subject research, on the other hand, is designed to ask to what extent will a given procedure results in clear effects observed with each individual. In other words, group-design research asks about the average effect of a treatment, and single-subject research asks about effects at the individual level.

effect of a treatment, and single-subject research asks about effects at the individual level. In relation to individuals with ASDs, single- subject research has been invaluable because it is sensitive to the wide variety of individual strengths and challenges experienced by individ- uals with ASDs and is the only way to identify the key variables and interventions that result in increased success for each individual. In fact, intervention research on children with ASDs and single-subject

for each individual. In fact, intervention research on children with ASDs and single-subject designs is more frequently used than all other research paradigms (Reichow et al. 2007) and has laid the foundations for the identi- fication of many evidence-based treatments for individuals with ASDs.

Relative to autism research, single-subject design has been invaluable in demonstrating important outcomes for individuals with ASDs and the careful assessment and planning that is necessary to appropriately individualize interven- tions for each person. In addition to basic and applied research, single-subject design has been central to educational and therapeutic interven- tions for individuals with ASDs. Single-subject design methodology is also the foundation of effective data-based

with ASDs. Single-subject design methodology is also the foundation of effective data-based decision making for individ- uals in educational and therapeutic settings, where ongoing data collection, progress monitoring, and using those data to identify the need for program revision is essential. The translation of this research paradigm into practice where it can be used to isolate intervention effects at the level of the indi- vidual is critical for ensuring that individuals receiving services

at the level of the indi- vidual is critical for ensuring that individuals receiving services have effective programs that are helping move them toward optimal outcomes. Finally, it is important to note that single- subject design is not the same as case study research. Case study research is limited to an account of an individual’s performance or experi- ences over the course of some intervention(s) or a retelling of an account of case(s) from a clinician (e.g., Kanner’s original 1943 report

or a retelling of an account of case(s) from a clinician (e.g., Kanner’s original 1943 report of 11 children with early infantile autism could be considered a case study). When used to describe interventions, case study research is not experimental in that it does not allow for clear identification of func- tional relations between variables (i.e., causal relations), whereas single-subject designs, on the other hand, manipulate experimental conditions such that a functional relation (causal

on the other hand, manipulate experimental conditions such that a functional relation (causal relation), if existing, can be identified.

Singsong Lisa Edelson-Fries Department of Psychology, Boston University, Boston, MA, USA Neurocognition, Department of Brain Health, Nestlé Institute for Health Sciences, Lausanne, Switzerland

Definition Odd patterns of vocal intonation can be referred to as “singsong,” a term which generally describes a speech style with a wide pitch range with large rises and falls. It should be noted that this term is somewhat imprecise as it is also occasionally used to describe a very different style of speech with a particularly narrow pitch range, as in a poetry reading, or speech produced to the tune of a preferred song. In all cases, this term is used to indicate that speech has a quality

the tune of a preferred song. In all cases, this term is used to indicate that speech has a quality that is different from the typical melodic patterns of conversa- tion. Some individuals with ASD have been noted to have a “singsong” style of speaking, with exaggerated or theatrical-sounding prosodic patterns.

Situations-Options-Choices-Consequences-Strategies-Simulation (SOCCSS) Program Ernst O. VanBergeijk Vocational Independence Program, New York Institute of Technology, Central Islip, NY, USA

Threshold Program, Lesley University, Cambridge, MA, USA Definition Situations-Options-Choices-Consequences- Strategies-Simulation (SOCCSS) Program is a strategy developed by Jan Roosa according to Myles and Aderon (2001). It is a social decision-making process designed to help stu- dents on the autism spectrum and with other disabilities understand social situations. Indi- viduals on the autism spectrum have difficulty in instances where they must understand and act upon the “unwritten rules”

spectrum have difficulty in instances where they must understand and act upon the “unwritten rules” of a social situ- ation. It is a step-by-step process by which individuals with ASDs learn to analyze and apply discrete skills in a given situation (Texas Statewide Leadership for Autism 2009). This is a particularly helpful technique because individuals with ASDs have difficulty generalizing skills across environments and sit- uations. SOCCSS can be used analytically as an interpretive tool, or

across environments and sit- uations. SOCCSS can be used analytically as an interpretive tool, or it can be used as an instruc- tional tool to aid in learning how to handle future social situations. Gray’s (1994) Comic Strip Conversations has been described as a visual or graphic SOCCSS (Minnesota Para- professional Consortium).

The SOCCSS social skills strategy consists of the six steps that comprise the acronym:
Step 1 Situation: the teacher or therapist helps the individual analyze the problem by answering the five “W’s” (i.e., who, what, when, and why) of the situation.
Step 2 Options: involves brainstorming ways to respond. Step 3 Consequences: includes a review of the possible consequences of each option gener- ated in the previous step.

Step 4 Choices: consists of reviewing each options-consequences sequence and then prioritizing possible responses. The individ- ual then selects his or her most likely response.
Step 5 Strategy: turns the previous four steps into a plan of action which may include a written script.
Step 6 Simulations: are practice sessions to deal with situation via guided imagery, reading written scripts, role plays, and other forms of behavioral rehearsal (Minnesota Paraprofes- sional Consortium).

Before the SOCCSS strategy is implemented with an individual with an ASD, he or she should be assessed for his or her abilities across a vari- ety of dimensions. These dimensions include behavioral abilities and characteristics of the person with the ASD. SOCCSS requires some ability to:

*   Answer who, what, when, where, and why questions *   Understand a simple cause-and-effect relationship *   Make choices *   Follow multistep directions *   Participate in social interactions *   Problem solve *   Identify or accept a socially appropriate outcome *   Generalize learning (Interactive Collaborative Autism Network) Characteristics that need to be considered when assessing the appropriateness of SOCCSS or the need to modify the strategy include:

*   Literal interpretation of information *   Poor perspective taking *   Inflexibility or a tendency to adhere strictly to a routine *   Difficulty predicting outcomes *   Lack of knowledge about social conventions such as turn-taking *   Lack of understanding of the cause-and-effect relationship of one’s behavior on others

*   Difficulty generalizing learning *   Difficulty multichanneling (Lawson 2001), i.e., the ability to respond to more than one stimulus at a time (Interactive Collaborative Network)
 Skinnerian Categories of Verbal Behavior Elizabeth Schoen Simmons Department of Psychological Sciences, University of Connecticut, Storrs, CT, USA

Synonyms Skinner’s verbal behavior; Verbal behavior Definition Skinner’s view of language is that verbal behavior is under the control of consequences mediated by other people. He was less interested in the mental structures like knowledge or language compe- tence but rather the functional relationships of the behavior in the environment in which it occurs. The child’s response is conditioned by its consequence in a specified situation or what Skin- ner called the antecedent-behavior-consequence

consequence in a specified situation or what Skin- ner called the antecedent-behavior-consequence (ABC) structure. For example, a toddler says “bah” and his mother responds, “Sure! Here’s the ball.” If the child is rewarded for “emitting” a specific behavior (i.e., making a sound), the child will learn to make the sound again under the same circumstances to gain the same reward. Skinner’s categories of verbal behavior include echoic, mand, tact, and intraverbal. According to Skinner’s theory,

of verbal behavior include echoic, mand, tact, and intraverbal. According to Skinner’s theory, each has a different function and will be produced under circumstances that elicit that function. An echoic is the repetition of a heard word or phrase for verbal learning and prac- tice, or an imitation. It is elicited by a request for imitation and a reward of the imitation (e.g., care- giver says “apple,” child repeats “apple,” child then gets to eat a slice of the apple). A mand behavior functions

child repeats “apple,” child then gets to eat a slice of the apple). A mand behavior functions as a request (e.g., child says “car” because he wants access to his toy car) to immedi- ately benefit the speaker. A tact is a label (e.g., child says “duck” because he sees one in a pond). Intraverbals are responses to others’ verbal behav- ior (e.g, responding to questions, taking conversa- tional turns).

Sleep Disorders and Autism Susan Calhoun Psychiatry, Penn State Health and College of Medicine, Hershey, PA, USA Synonyms Sleep disturbance; Somnolence Definition Sleep disorder is a term used to describe problems with the quality, timing, and amount of sleep that can negatively impact the physical, emotional, behavioral, cognitive, and social development and daytime functioning of youth and cause stress for families. Research has suggested that youth with autism are particularly vulnerable to

stress for families. Research has suggested that youth with autism are particularly vulnerable to sleep disor- ders, with prevalence rates reported as high as 80%. There is also mounting evidence that sleep disorders that are associated with too little sleep or poor sleep quality can worsen certain symptoms associated with autism, such as aggression, somatosensory disturbances, and repetitive behav- iors, which can, in turn, make sleeping even more difficult. Furthermore, sleep disorders in

behav- iors, which can, in turn, make sleeping even more difficult. Furthermore, sleep disorders in youth with autism tend to be more severe, persistent, and resistant to treatment with a higher relapse rate compared to youth with other developmental disorder such as attention deficit hyperactivity dis- order and in typically developing youth. The types of subjective sleep problems most commonly encountered in sleep in youth with autism include irregular sleep-wake patterns; short sleep duration;

in sleep in youth with autism include irregular sleep-wake patterns; short sleep duration; insomnia symptoms (difficulty falling and staying asleep, early morn- ing awakenings); parasomnias such as sleep wak- ing, night terrors, and bruxism (teeth grinding); circadian rhythm abnormalities; and sleep complaints associated with medical disorders. Moreover, the prevalence of objectively measured sleep disorders such as obstructive sleep apnea and periodic limb movement disorder are signifi- cantly

disorders such as obstructive sleep apnea and periodic limb movement disorder are signifi- cantly increased in youth with autism. From a public health standpoint, given the high prevalence and persistence of sleep disorders in youth with autism, all children presenting with autism should be systematically screened for the presence of sleep disturbances and disorders and assessed for any potential co-occurring sleep disorder. If the clinical presentation suggests the risk for any sleep disorder,

co-occurring sleep disorder. If the clinical presentation suggests the risk for any sleep disorder, these youth should be evaluated using appropriate assessment tech- niques including thorough sleep history and sleep diaries and overnight sleep studies when warranted. Clinicians need to be aware of the impact of sleep disorders in youth with autism and provide targeted evidence-based interven- tions that include, but are not limited to, behav- ioral interventions and sleep hygiene techniques,

that include, but are not limited to, behav- ioral interventions and sleep hygiene techniques, cognitive behavioral therapy for insomnia, chro- notherapy, and use of melatonin and prescription medication. The etiologies of sleep disorders in youth with ASD are likely multifactorial with the interaction of biological mechanisms, psychosocial and envi- ronmental influences, and family factors includ- ing child-rearing practices that are not conducive to good sleep playing a role. Future research

ing child-rearing practices that are not conducive to good sleep playing a role. Future research needs to be conducted on the causes of sleep disorders and effectiveness of treatment in youth with autism.

Small-Group Technology-Assisted Instruction Using Socially Assistive Robotics and Virtual Reality
Mohammad Nasser Saadatzi Department of Electrical and Computer Engineering, University of Louisville, Louisville, KY, USA

Definition Small-group technology-assisted instruction (SGTAI) is an instructional paradigm, during which a group of students, typically two to four, are instructed by a teacher in a close spatial and temporal proximity. In the SGTAI paradigm, at least one of the students or the teacher is emulated via the usage of virtual characters or robots.

Historical Background One-to-One Instruction One-to-one instruction has been long established for instructing individuals with an autism spectrum disorder (ASD). In this format, a teacher uses sys- tematic prompting procedures followed by correc- tive feedback or reinforcement to instruct chosen target behaviors to a single student. In this format, the instruction is delivered to the target student within a highly structured and well-planned format and typically isolated from their peers in a

within a highly structured and well-planned format and typically isolated from their peers in a contained setting. The efficacy and benefits of this instruction format in terms of behavior devel- opment of students with ASD are well- substantiated in the literature and practice. Within this format, the teacher’s attention and instruction resources are dedicated to the target student, which reduces distracting stimuli and facilitates skill acquisition. Furthermore, this instructional format may be

stimuli and facilitates skill acquisition. Furthermore, this instructional format may be successfully implemented with minimal prerequisite skills from the student. Despite the benefits, one-to-one (1:1) instruc- tion consumes teacher’s instructional time and, hence, demands copious resources for recruitment and training of qualified instructors. This imposes substantial strain on the educational system as data indicates there is a constant dearth of competent special education teachers (US

system as data indicates there is a constant dearth of competent special education teachers (US Department of Education 2014). Besides, this instruction for- mat disregards natural instruction environment and hinders instructional and social integration of such students as they are often separated from their peers during instruction. Relying merely on 1:1 format restricts peer interaction opportunities and may prevent acquisition of social interaction abilities essential for functioning in

and may prevent acquisition of social interaction abilities essential for functioning in classroom settings where multi-student instruction is the standard.

Small-Group Instruction Small-group instruction (SGI) is another instruction format, during which a group of students, typically two to four, are instructed together. Small-group instruction improves efficiency of instruction in terms of teacher’s time since multiple students are instructed concurrently. It also more closely resem- bles inclusive environments and general classroom settings where students are in a close proximity and, thus, prepares an environment with higher chances of peer

students are in a close proximity and, thus, prepares an environment with higher chances of peer interaction. Within this arrangement, stu- dents may acquire appropriate student-to-student interaction skills and get prepared for functioning in less restrictive settings. Besides, students receive multiple and varied forms of the target behavior, which, in turn, facilitates skill generalization to other people and non-training settings.

Imitational Learning As a result of exposure to other students’ behav- iors in the group, SGI provides a context in which students can learn new responses and skills through imitation of peers. From a behav- ioral standpoint, imitation, which is a category of observational learning, is defined as an individ- ual’s behavior that is contiguous in time and similar to that of a model. For instance, if one shows a thumbs-up in front of a child for the first time and the child emits a similar gesture

one shows a thumbs-up in front of a child for the first time and the child emits a similar gesture follow- ing the modeled behavior, it would be considered an imitative behavior. An imitative behavior may be strengthened through direct reinforcement.

Vicarious Learning Another advantage of SGI format is that it pro- vides a context in which students can learn novel skills or refine behaviors by viewing the “consequences” received by their peers for their correct or incorrect responses and behaviors. This type of learning, which is another category of observational learning, is called vicarious learning. Merriam-Webster dictionary defines vicarious as “experienced or felt by watching, hearing about, or reading about someone else rather than

as “experienced or felt by watching, hearing about, or reading about someone else rather than by doing something yourself.” Vicarious learning involves an individual observ- ing others come in contact with stimulus-response contingencies and, thus, learn without directly receiving consequences. A significant difference between imitational learning and vicarious learn- ing is that the latter may cause behavior suppres- sion as a result of observing non-preferred consequences received by a model

behavior suppres- sion as a result of observing non-preferred consequences received by a model due to a behav- ior. For instance, a child may vicariously learn not to throw a basketball at a peer after he sees nega- tive reactions of other students to another peer doing so. Early studies done by Bandura (1965) demonstrated that children who observed a model received punishment following his aggressive behavior were less likely to match the response of the model and to engage in that kind of

behavior were less likely to match the response of the model and to engage in that kind of behav- ior. Imitation, on the other hand, can only include an observer’s behavior matching that of a model. SGI provides a context in which a student can vicariously learn new responses by watching teacher’s instruction delivered to other students, their responses, and the subsequent teacher’s rein- forcement or feedback according to their accuracy of response. Therefore, simply by group participa- tion,

or feedback according to their accuracy of response. Therefore, simply by group participa- tion, each student in the group has the opportunity to acquire skills targeted to other students even when he/she is not directly reinforced for his/her learning. Despite the aforementioned benefits, for a successful implementation, SGI requires a few prerequisite skills from students. For a successful inclusion and proper progress within an SGI format, students are required to possess certain prerequisite

and proper progress within an SGI format, students are required to possess certain prerequisite skills, such as contingent turn-taking (without disruptive and aberrant behavior, out of seat behavior, or verbalization) and compliancy. Lacking such group-specific skills may adversely affect satisfactory progress of the student and that of his/her peers alike.

Current Knowledge Computer-Assisted Instruction Many individuals with ASD find interacting with computers more joyful and comfortable than with humans and feel an affinity with them, suggesting that computer-assisted instruc- tion (CAI) can be an effective intervention method for them (see chapters ▶“Computer- Based Intervention Assistive Technology” and ▶“Computer-Assisted Instruction to Teach Academic Skills”). There have been several studies investigating the use and efficacy and efficiency of

Skills”). There have been several studies investigating the use and efficacy and efficiency of CAI for behavioral, academic, and social develop- ment of individuals with ASD (Pennington 2010). Although the reported positive gains vary, the over- all results are quite favorable. CAI can provide learning environments that are individualized, highly controlled, and structured and can include a variety of modalities, such as text, sound, and images. CAI enhances motivational and attentional factors

of modalities, such as text, sound, and images. CAI enhances motivational and attentional factors and increases engaged time and enjoyment in individuals with ASD. CAI also has the potential to reach people on the autism spectrum at a broader scale because of the savings due to automation.

Small-Group Technology-Assisted Instruction Computer-assisted instruction has been also used in the context of SGI. For instance, Mechling et al. (2007) used PowerPoint slides presented on an interactive electronic whiteboard to instruct recognition of grocery words to students with intellectual disabilities within a small group arrangement. Their instructional procedure involved a teacher advancing the PowerPoint slides, delivering prompts and directions, reading the target words, and

advancing the PowerPoint slides, delivering prompts and directions, reading the target words, and providing reinforcement and feedback to students. This study is perhaps the first to demon- strate the efficacy of CAI in the context of an SGI arrangement. Saadatzi et al. (2018a) developed an intelligent tutoring system which resembled an SGI arrange- ment, which featured a virtual character and a humanoid robot. The virtual character, displayed on a desktop screen, simulated a human teacher

a humanoid robot. The virtual character, displayed on a desktop screen, simulated a human teacher delivering sight word instruction, with meaningful and contingent gaze behavior, body gestures, and facial expressions. On the other hand, the humanoid robot adopted a peer metaphor and served as an emulated peer for students with ASD. The commu- nication of the virtual teacher (VT) and the robot peer (RP) with students and each other was through synthesized speech and automatic speech recogni-

peer (RP) with students and each other was through synthesized speech and automatic speech recogni- tion, in order to facilitate learning through natural language. In this study, the RP’s behavior repertoire (e.g., meaningful body gesture as well as contingent social behavior) was designed to increase students’ engagement. The RP demonstrated proper group- specific social behaviors, interacted with the stu- dents, and provided a context for the participants to rehearse social skills. The authors

the stu- dents, and provided a context for the participants to rehearse social skills. The authors demonstrated the efficacy of this tutoring system with three chil- dren with ASD. In this study, the VTinstructed three types of sight words to student-RP dyads including (i) target words unique to student, (ii) nontarget words unique to the RP, and (iii) target words shared between student and the RP. The results indicated that (i) the students acquired the target words directly instructed to them

The results indicated that (i) the students acquired the target words directly instructed to them with 100% accuracy; (ii) they vicariously learned the majority of the nontarget words solely taught to the RP, merely by watching the instruction to the RP; and (iii) they learned the shared target words faster and with fewer errors. The participants demonstrated maintenance of their target words for 8 weeks after the instruction and generalized performance to words written on paper at their homes.

8 weeks after the instruction and generalized performance to words written on paper at their homes. They, furthermore, maintained and generalized the nontarget words, which were previously instructed to the RP, with a mean accu- racy of 88.89%. In a follow-up study, Saadatzi et al. (2018b) replicated this study with two adults with ASD and reported similar outcomes. These two studies were the first to prepare a small-group technology-assisted instruction (SGTAI) in an agent-robot-student format

to prepare a small-group technology-assisted instruction (SGTAI) in an agent-robot-student format and to study the effects of such a learning environment on vicarious learn- ing of nontarget stimuli.

Why SGTAI National Research Council’s Committee on Educa- tional Interventions for Children with ASD recommended that developmentally appropriate SGI instruction should be included in the education of individuals with ASD as group skills are crucial for a student to thrive in inclusive and general class- room settings (National Research Council 2001). Individuals with ASD, however, are often unable to benefit from such instruction arrangements due to their impaired social interaction and

unable to benefit from such instruction arrangements due to their impaired social interaction and communication deficiencies. Furthermore, they often struggle to generalize skills acquired during 1:1 intervention to novel settings and peers. They may become adept at a trained skill but fail to transfer that knowl- edge to everyday life. This makes development of interventions for these individuals highly challeng- ing. Koegel and Rincover (1974) evaluated the con- sequences of transferring

highly challeng- ing. Koegel and Rincover (1974) evaluated the con- sequences of transferring individuals with ASD from a 1:1 format to an SGI format. In this study, in a 1:1 arrangement, eight students with ASD were first instructed a number of behaviors required for group participation and were then transferred to a group arrangement. The results demonstrated that the students minimally and inconsistently general- ized the skills they had acquired in the 1:1 arrange- ment to the group

and inconsistently general- ized the skills they had acquired in the 1:1 arrange- ment to the group arrangement, even in a small group comprised of one teacher and two students. Additionally, even prolonged group participation did not seem to produce much change as the stu- dents failed to acquire new behaviors during a month-long participation in the group setting. Sim- ilarly, Graff, Green, and Libby (1998) conducted a study on the effects of two levels of behavioral intervention. The

and Libby (1998) conducted a study on the effects of two levels of behavioral intervention. The participant, a 5-year-old child with ASD, received 1:1 intervention for a year, which was changed due to resource limitations. When the student-to-teacher ratio increased, the par- ticipant’s challenging behavior escalated, while his progress in skill acquisition either decreased or remained stable. In this case, the abrupt change in teacher-to-student ratio seemed to adversely affect his progress in

this case, the abrupt change in teacher-to-student ratio seemed to adversely affect his progress in the group arrangement.

Although group instruction can be an effective and efficient instructional arrangement for indi- viduals with ASD, it seems necessary to pay care- ful attention to how to transit from 1:1 to group settings. Special procedures should be identified and be employed to ensure a smooth shift and avoid abrupt transition for many of these individuals. Furthermore, extra attention must be paid on developing instructional techniques that equip these students with behaviors necessary for multi-student

instructional techniques that equip these students with behaviors necessary for multi-student contexts and that prepare them for group participation. Following this rationale, the Division of Early Childhood of the Council for Exceptional Children emphasized on the role and potential of technology to improve access to and participation in general education curriculum and inclusive environments (Stremmel 2005). In this context, SGTAI reflects a novel direction in tutoring systems in which

(Stremmel 2005). In this context, SGTAI reflects a novel direction in tutoring systems in which students with ASD can learn and rehearse group-specific social and coping behaviors (such as perspective-taking, rec- iprocity, and imitational learning) in a controlled environment without negative feedback from and teasing of peers, unnecessary embarrassment, and fear of failure. It is well-established that resemblance of a training setting to the natural environment (i.e., where behaviors are

that resemblance of a training setting to the natural environment (i.e., where behaviors are expected to occur) enhances generalization of skills (Koegel and Rincover 1977; Stokes and Baer 1977). Hence, SGTAI may properly prepare individuals with ASD for group participation by providing a naturalized learning environment that facilitates transition to natural situations. SGTAI provides an educa- tional context where students with ASD learn some target skills (typically academic such as

educa- tional context where students with ASD learn some target skills (typically academic such as reading), but also certain desirable behaviors are elicited and practiced (e.g., eye contact, gaze following, joint attention, turn-taking, imi- tation, and attention to other students’ responses). SGTAI provides a tightly controlled and reinforcing environment in which students are required to perform group-specific behaviors, facilitating generalization of those behaviors to classroom settings.

group-specific behaviors, facilitating generalization of those behaviors to classroom settings. Although SGTAI should not substitute learning scenarios that more closely resemble natural contexts, it may promote par- ticipation in them.

Future Directions Virtual Reality Virtual reality learning environments are simulated educational platforms employing computer- generated 3D graphics, which typically incorporate animated characters with instructional roles, referred to as pedagogical agents. Pedagogical agents (PAs) are lifelike virtual characters that interface between the content of an educational environment and students. PAs engage with stu- dents through natural language, meaningful body gesture, and contingent facial

PAs engage with stu- dents through natural language, meaningful body gesture, and contingent facial expressions. In such learning environments, students learn the intended behaviors while interacting with a virtual character exhibiting social and emotional behaviors (such as eye gaze behavior, body gesture, and facial expres- sions). PAs can be programmed to demonstrate emotional states pertinent to the pedagogical cir- cumstance, such as engagement, confusion, frus- tration, and curiosity. PAs

to the pedagogical cir- cumstance, such as engagement, confusion, frus- tration, and curiosity. PAs can utilize eye gaze behavior to simulate joint attentional bids or regu- late turn-taking. They can demonstrate head nods/ shakes or emotive faces to communicate feedback to the student’s responses and actions (Kandalaft et al. 2013; Saadatzi et al. 2017). In VR learning environments, students can rehearse real-life scenarios through the comfort and safety of a simulated environment, in which

rehearse real-life scenarios through the comfort and safety of a simulated environment, in which physical proximity, sound level, and social inter- actions are tightly controlled. VR provides a pre- dictable and customizable environment where students can learn and repetitively practice social behaviors through interaction with PAs that require fewer social skills and hence produce less anxiety. A favorable property of PAs is that, depending on the desired purpose, they can serve different

A favorable property of PAs is that, depending on the desired purpose, they can serve different educational roles in an SGTAI environment, such as a simulated teacher or a simulated peer/classmate. Application of VR for instruction of social and academic skills to students with ASD, particularly in the context of SGTAI, is currently underrepre- sented, calling for further research to reveal and realize its full potential. To date, most VR tutoring systems for individuals with ASD have been

realize its full potential. To date, most VR tutoring systems for individuals with ASD have been developed as desktop virtual environments (DVEs). DVEs visualize the learning environ- ment on a computer display and utilize conven- tional devices to receive users’ inputs (e.g., keyboard and mouse). As such, DVEs cannot completely surround their users into the synthetic learning environment. On the contrary, immersive virtual environments (IVEs) employ head- mounted displays or VR domes to

On the contrary, immersive virtual environments (IVEs) employ head- mounted displays or VR domes to surround their users in the synthetic environment. It has been suggested that IVEs have the potential to induce higher engagement and can generate an environ- ment with high ecological validity, which are conductive to acquisition of skills and generaliza- tion thereof to real world. However, there are a number of concerns associated with the usage of IVEs for individuals with ASD, as they may

are a number of concerns associated with the usage of IVEs for individuals with ASD, as they may cause sensory overstimulation, VR-induced symptoms (i.e., cyber-sickness), and irritation due to the head-mounted displays (Wallace et al. 2010). Although previous literature suggests that both desktop and immersive virtual environments are effective tools for instruction of individuals with ASD, their effects on user experience as well as their relative effectiveness are less known and warrant

their effects on user experience as well as their relative effectiveness are less known and warrant further investigation.

Socially Assistive Robotics The origination of robotic therapy of ASD goes back to the 1976 through a seminal study conducted by Weir and Emanuel (Weir and Emanuel 1976), where an autistic boy was introduced to a remote-controlled turtle. The researchers investigating robotic intervention for ASD envisage design and construction of robotic systems that can guide these individuals from very simple forms of interaction towards more complicated ones, as those in social human-human interactions,

forms of interaction towards more complicated ones, as those in social human-human interactions, by slowly increasing the sys- tem’s behavior repertoire as well as its complexity, duration, frequency, and unpredictability. At first, in a very simple context, the system demonstrates a small set of behavior plans, specifically for those individuals with intense deficiencies. After a while, in a gradual basis, the system features a larger behavior repertoire and plans its behavior, based on an agenda

basis, the system features a larger behavior repertoire and plans its behavior, based on an agenda that is therapeutically relevant. The previous literature indicates that robots have the potential to serve as intervention means for indi- viduals with ASD. They can implement multi- modal and embodied social interaction and can closely simulate dynamics of human-human inter- action (see chapters ▶Robot-Assisted Cognitive Behavioral Therapy for Young Children with Autism Spectrum Disorders). Both

Cognitive Behavioral Therapy for Young Children with Autism Spectrum Disorders). Both virtual reality and social robots can create individualized and highly controlled learning experiences that are well reproducible and engag- ing. However, robots’ physical presence and embodiment allow for touch and physical interactions, thereby amplifying their capacity to be employed in certain intervention scenarios. Fur- thermore, their physicality can aid students with ASD build a rapport and facilitate

Fur- thermore, their physicality can aid students with ASD build a rapport and facilitate their joint atten- tion with other entities in an SGTAI environment (i.e., virtual/robot/human teacher and peers). Pre- vious literature suggests that, due to their appealing and salient nature, robots tend to evoke episodes of joint attention in students with ASD, draw their attention, and furnish a playful experience. These potentials may be utilized to steer these individuals’ attention to instructional

experience. These potentials may be utilized to steer these individuals’ attention to instructional material and enhance their engagement with the SGTAI environment. The salience and novelty of robots may be harnessed as a reinforcer and, thereby, amplify these individuals investment in the instruction. As individuals with ASD are known to exhibit short attention spans, robots can be employed to enhance students’ engagement through their visual appeal and body motion, as well as their

to enhance students’ engagement through their visual appeal and body motion, as well as their interactive behavior. In general, robots are engaging for children with ASD and can offer reduced complexities as compared to human interactions.

Adaptive SGTAI Since ASD does not occur to the same degree and in the same form in all cases, individuals with ASD are a user group with substantial heterogeneity. In efforts to justify why human teaching is so effective, the benefits have been attributed to their proficiency in customizing pedagogical strategies and in providing in-depth individualization of content. Against their long-standing promise, however, comput- erized tutoring systems for individuals with ASD rarely perform such

promise, however, comput- erized tutoring systems for individuals with ASD rarely perform such individualization. Future SGTAI systems should adopt an adaptive instruction paradigm by creating and inferring from a dynamic student model, rather than sim- ply using static rules and heuristics. Adaptation to personal learning styles will optimize the learning experience and render the instruction potentially more targeted when an individual is struggling. Future research should deploy and evaluate

more targeted when an individual is struggling. Future research should deploy and evaluate individualized instruction algorithms in SGTAI, enabling adaptation to individual stu- dents’ (dis)abilities based on longitudinal obser- vations of interactions with students.

Affect-Sensitive SGTAI Learning is always accompanied and influenced by a set of affective states. For example, boredom and frustration are negatively correlated with learning gains, whereas confusion and engage- ment positively influence learning. In a classroom setting, expert human tutors are proficient at detecting the emotional state of students and taking actions accordingly in order to optimize their learning. A few recent tutoring systems, designed for typical students, have incorporated

their learning. A few recent tutoring systems, designed for typical students, have incorporated affect responsiveness into their pedagogical strat- egies. To date, however, little effort has been made to investigate this approach in CAIs developed for individuals with ASD. Given that ASD is associ- ated with differences in emotional experiences and autonomic responses, there is no guarantee that individuals with ASD experience the stimuli in the same way as typical students and that the

that individuals with ASD experience the stimuli in the same way as typical students and that the learning-affect link is the same. It has been suggested that affective and cognitive compo- nents are equally influential in educational procedures and that CAI systems with mecha- nisms for detecting and responding to students’ affective states are highly beneficial. In order for a tutoring system to respond to different affective states of students, it must first be endowed with a means to recognize

to different affective states of students, it must first be endowed with a means to recognize those states. Individuals with ASD often have commu- nicative difficulties regarding the expression of affective states which limit traditional auditory and visual approaches in automatic detection of emotions. Future research should investigate what expert therapists observe in individuals with ASD to rate their affective states as well as how they decide upon a course of action in response to that

rate their affective states as well as how they decide upon a course of action in response to that observation. SGTAI systems should be able to detect stu- dents’ affective cues but also should intelligently customize their pedagogy accordingly. By con- sidering affective information, SGTAI systems can begin to dynamically tailor their pedagogical strategies not just to the cognitive cues such as number or type of errors made by the student and time taken to fulfill criterion but also to their

number or type of errors made by the student and time taken to fulfill criterion but also to their affective states (e.g., frustration, confusion, interest). As such, an affect-sensitive SGTAI sys- tem would not only detect whether students are making mistakes but also whether that is accom- panied by curiosity and engagement or by frus- tration. Therefore, various reactions of the SGTAI system (from the virtual/robot/human teacher and peers) may be created and examined for these different

(from the virtual/robot/human teacher and peers) may be created and examined for these different circumstances (e.g., adjusting difficulty level, changing the pedagogical strategy).

Smith v. Robinson (1984) Rights to Attorney Fees for Parents Silvia Adaes Quinnipiac University School of Law, Hamden, CT, USA Synonyms Smith v. Robinson (1984) Definition This case addressed a parent’s entitlement to reim- bursement of attorney’s fees incurred as a result of legal action against a public school board for discrimination against the special needs of a men- tally impaired student. In Smith v. Robinson, the Cumberland, Rhode Island, superintendent of schools denied continued

In Smith v. Robinson, the Cumberland, Rhode Island, superintendent of schools denied continued funding, by the school committee, of the necessary special programs required by the petitioner, a child who suffers from cerebral palsy and other mental handicaps. The petitioner’s parents filed an action in federal district court against the school committee and against various state school officials. The parents brought forth claims for declaratory and injunctive relief based on state law, specifically

parents brought forth claims for declaratory and injunctive relief based on state law, specifically the Education of the Handicapped Act (hereinafter “EHA” or the “Act”), on §504 of the Rehabilitation Act of 1973 and, with respect to certain federal constitutional claims, on 42 U.S.C. §1983. Although the district court orig- inally found for the petitioner and awarded attor- ney’s fees, on appeal, the Court of Appeals reversed the lower court’s decision on the grounds that the petitioner’s

the Court of Appeals reversed the lower court’s decision on the grounds that the petitioner’s action, and subsequent relief granted, fell within the scope of the Act which does not provide for attorney’s fees. The Court of Appeals went on to state that notwithstanding the petitioner’s federal constitutional claims – which generally allow for the reimbursement of attor- ney’s fees – the relevant decision was within the scope of the EHA and that the Act’s omission of attorney’s fees does not

decision was within the scope of the EHA and that the Act’s omission of attorney’s fees does not imply the court’s use of federal law in awarding fees. The US Supreme Court thereafter upheld the Court of Appeals’ decision.

Conclusion In Smith v. Robinson, although the child’s parents prevailed in their claims of discrimination and violation of due process against the school com- mittee in federal court, the US Supreme Court held against reimbursement of attorney’s fees for the entire proceedings. The Supreme Court held that a petitioner availing himself of the EHA and being successful thereunder cannot collect attorney’s fees for unsuccessful federal claims simultaneously filed. In addition, the court found that

fees for unsuccessful federal claims simultaneously filed. In addition, the court found that the specific simul- taneous claims – §504 of the Rehabilitation Act of 1973 and on 42 U.S.C. §1983 – raised by the petitioners did not, in and of themselves, allow for attorney’s fees.

Smith, Tristram Suzannah Iadarola Department of Pediatrics, University of Rochester Medical Center, Rochester, NY, USA
Name and Degrees Tristram Smith, Ph.D.  Major Appointments (Institution, Location, Dates) Haggerty-Friedman Professor of Developmental/ Behavioral Pediatric Research, University of Rochester Medical Center (2016–2018)
Professor of Pediatrics, University of Rochester Medical Center (2012–2016) Associate Professor of Pediatrics, University of Rochester Medical Center (2007–2012)

Assistant Professor of Pediatrics, University of Rochester Medical Center (2000–2006)
Assistant Professor, Department of Psychology, Washington State University (1995–2000)
Visiting Assistant Professor, Department of Psy- chology, Drake University (1993–1995)
Lecturer, Department of Psychology, University of California Los Angeles (1990–1993)
 Major Honors and Awards New York State Association for Behavior Analy- sis Award for Significant Contributions to Applied Behavior Analysis (2003)

Ruth A. Lawrence Academic Faculty Research Service Award, University of Rochester Medical Center (2009)
Endowed Chair: Haggerty-Friedman Professor- ship of Developmental/Behavioral Pediatric Research (2016)

Landmark Clinical, Scientific, and Professional Contributions Dr. Smith’s early research contributed signifi- cantly to our understanding that we can improve outcomes for individuals with ASD. His seminal research with Dr. O. Ivar Lovaas provided the first demonstration that children with autism spec- trum disorder could be successfully engaged in behavioral interventions and that for some chil- dren, intervention resulted in significant gains on standardized assessment outcomes and clinical

dren, intervention resulted in significant gains on standardized assessment outcomes and clinical outcomes. This seminal work not only altered conventional wisdom regarding the possibility of interventions in autism, but it ignited advocacy efforts and provided both hope and a plan for many families. Subsequent to his work on early intensive behavioral interventions (EIBI), Dr. Smith conducted replications studies, assessed long-term outcomes, and specifically evaluated predictors of success in

studies, assessed long-term outcomes, and specifically evaluated predictors of success in EIBI.

To extend his evaluation of existing interven- tions, Dr. Smith led and participated in numerous efforts to develop and evaluate novel interven- tions. Many of these focused on parent-mediated treatments to address concerns such as disruptive behavior and feeding difficulties. This research contributed support to parents’ ability to deliver evidence-based interventions to address a variety of challenges and also established that parent- mediated treatment can result in similar or enhanced gains

and also established that parent- mediated treatment can result in similar or enhanced gains compared to other options, such as medication to address hyperactivity. More recently, Dr. Smith’s work has supported the successful dissemination and implementation of community-based interventions to enhance outcomes for individuals with ASD. His school- based interventions showed that academic and behavioral improvement was possible via inter- ventions delivered in real-world classroom settings and

improvement was possible via inter- ventions delivered in real-world classroom settings and that educators could reliably imple- ment these strategies. Dr. Smith was actively involved in the devel- opment and evaluation of interventions that targeted core difficulties in ASD, in addition to academic and behavioral outcomes. He participated in multi-site network comparative effectiveness studies evaluating the relative bene- fits of applied behavior analytical strategies versus

studies evaluating the relative bene- fits of applied behavior analytical strategies versus social-communication interventions for children with ASD and minimal verbal skills. Dr. Smith also led the development and implementation of a modular intervention to support student with ASD in classrooms that targeted both core and associated features of ASD.

Short Biography An early friendship with a young man with autism inspired Dr. Smith’s application into the doctoral program at the University of California Los Angeles, where in 1983 he was accepted to work with Dr. O. Ivar Lovaas on the UCLAYoung Autism Project. With Dr. Lovaas, Dr. Smith engaged in seminal research on behavioral inter- ventions to improve cognitive outcomes for young children with ASD. In 2000, Dr. Smith joined the faculty at the University of Rochester Medical Center, where

ASD. In 2000, Dr. Smith joined the faculty at the University of Rochester Medical Center, where an interdisciplinary, feder- ally funded autism research center had been recently established under the leadership of Patricia Rodier, PhD. With his collaborators, Dr. Smith was awarded Studies to Advance Autism Research in Treatment (STAART) Center grant, thus beginning a very successful series of funded investigations based in Rochester. Dr. Smith demonstrated research expertise across myriad

funded investigations based in Rochester. Dr. Smith demonstrated research expertise across myriad topics, including longitudinal evaluations of EIBI and assessing predictors of outcomes in EIBI. Acknowledging the significant role that families play in their children’s treatment, Dr. Smith collaborated on several, multi-site pro- jects on parent-mediated intervention related to disruptive behavior and feeding challenges. Always mindful of how his research translated into meaningful outcomes for

and feeding challenges. Always mindful of how his research translated into meaningful outcomes for families, Dr. Smith recently focused much of his work on the appli- cation of evidence-based interventions in real world settings. Through extensive collaborations with the community and researchers around the country, Dr. Smith led studies on implementa- tion of interventions to support parents, educators, and other school personnel in helping children with autism access appropriate and

educators, and other school personnel in helping children with autism access appropriate and high-quality services in home and public school settings – often with an emphasis on families who are tradi- tionally under-represented in research.

Smith-Lemli-Opitz Syndrome Elaine Tierney and Geeta Sarphare Department of Psychiatry, Kennedy Krieger Institute, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Department of Child and Adolescent Psychiatry, Kennedy Krieger Institute, Johns Hopkins University School of Medicine, Baltimore, MD, USA

Synonyms 7-Dehydrocholesterol reductase deficiency; RSH syndrome; SLO syndrome; SLOS  Short Description or Definition Smith-Lemli-Opitz syndrome (SLOS) was described by the original authors as “RSH syndrome” based on the first initials of three individuals with SLOS (Smith et al. 1964). New cases were later described and additional characteristics were delineated. SLOS is an autosomal recessive disorder due to inborn error of cholesterol metabolism caused by mutations of the 7-dehydrocholesterol

due to inborn error of cholesterol metabolism caused by mutations of the 7-dehydrocholesterol reduc- tase gene (DHCR7) (Tint et al. 1994), and the gene was later identified at 11q12-q13 (Fitzky et al. 1998; Wassif et al. 1998; Waterham et al. 1998). In individuals with SLOS enzyme, activity of the protein coded by DHCR7 is reduced or absent, resulting in insufficient cholesterol synthesis and the accumulation of precursor sterols, 7-dehydrocholesterol (7DHC) and its isomer 8-dehydrocholesterol

accumulation of precursor sterols, 7-dehydrocholesterol (7DHC) and its isomer 8-dehydrocholesterol (8DHC). This deficiency causes extremely var- iable clinical, physical, and behavioral mani- festations: from presenting as a lethal disorder with multiple major congenital anomalies to presenting with minor physical stigmata, as well as behavioral and learning disabilities, autism spectrum disorders, aggression, self- injury, sleep problems, irritability, and atten- tion deficit hyperactivity

aggression, self- injury, sleep problems, irritability, and atten- tion deficit hyperactivity disorder.

Categorization Smith-Lemli-Opitz-Syndrome (SLOS) is catego- rized as an autosomal recessive multiple malfor- mation Mendelian disorder (Kelley 2000; Opitz 1969).

Epidemiology SLOS has an estimated incidence among individ- uals of European ancestry in Canada and the USA of 1 in 15,000 to 1 in 60,000 births (Bzdúch et al. 2000; Lowry and Yong 1980; Opitz 1999a; Porter 2000; Ryan et al. 1998; Tint et al. 1994) and a carrier frequency of 1 in 30 to 1 in 50 for the most common SLOS mutant allele in North American populations (Battaile et al. 2001; Nowaczyk and Waye 2001). In the Asian and African races, SLOS is less common and historically females were

and Waye 2001). In the Asian and African races, SLOS is less common and historically females were diagnosed less frequently due to a lower degree of visible genital anomalies (Porter 2000). In those affected with more severe muta- tions, there is increased incidence of intrauterine fetal deaths and neonatal deaths. Also, individuals with SLOS who have mild features are often not diagnosed and may come to the attention of clini- cians due to the diagnosis of SLOS in a family member. Individuals

come to the attention of clini- cians due to the diagnosis of SLOS in a family member. Individuals with SLOS have a deficiency of 3-beta-hydroxysterol delta-7-reductase activity due to mutation of the 3-beta-hydroxysterol delta-7-reductase gene (DHCR7). This enzymatic deficiency impairs the conversion of 7-dehydrocholesterol (7DHC) to cholesterol in the last step of cholesterol biosynthesis via the Kandutsch-Russel biosynthetic pathway. There- fore, total sterol and cholesterol levels are

via the Kandutsch-Russel biosynthetic pathway. There- fore, total sterol and cholesterol levels are decreased and 7DHC and 8DHC levels are ele- vated (Porter 2000). In SLOS, the clinical (nonbehavioral) severity of abnormalities corre- lates with the ratio of the blood level of 7DHC (or the sum 7DHC plus 8DHC) expressed as a fraction of total sterols (total sterols ¼ cholesterol plus 7DHC plus 8DHC) (Kelley and Hennekam 2000). The best biochemical predictor of clinical severity is the plasma

8DHC) (Kelley and Hennekam 2000). The best biochemical predictor of clinical severity is the plasma cholesterol level, which decreased with increasing clinical severity (Cunniff et al. 1997). Independent of sterol syn- thesis, absolute blood sterols levels are subject to wide physiological variables, giving a spectrum of variability (Kelley and Hennekam 2000). In one study, approximately 10% of subjects with SLOS had normal cholesterol levels at the time of diag- nosis, and the SLOS diagnosis

subjects with SLOS had normal cholesterol levels at the time of diag- nosis, and the SLOS diagnosis would have been missed without specific quantification of 7DHC (Cunniff et al. 1997).

Natural History, Prognostic Factors, Outcomes Smith-Lemli-Opitz Syndrome is character- ized by major abnormalities of development at birth (Kelley 2000). At 6 weeks of ges- tation when the heart chambers and cerebral ventricles are forming, there are distur- bances in morphogenesis. Furthermore, at 12 weeks of gestation, more effects are noted during the development of terminal digits (K).

Clinical Expression and Pathophysiology The clinical manifestations of SLOS are extremely variable and the phenotypic spectrum is broad. At the severe end of the spectrum, SLOS is a lethal disorder with multiple major congenital anomalies, and in mild cases SLOS combines minor physical stigmata with behav- ioral and learning disabilities. Phenotypic fea- tures include developmental delay, abnormal genitalia, as well as hand and toe abnormalities that may include:

*   Polydactyly *   and toe syndactyly. *   Short Thumbs In mild cases, toe syndactyly may be the only evident physical anomaly (Bukelis et al. 2007).

Hirschsprung disease, sexual ambiguity, or partial sex reversal in 46, XY males and structural defects of the heart, lungs, liver, and kidneys may occur (Kelley 2000). Facial and cranial abnormalities that may occur include hypertelorism, narrow forehead, short nose with upturned nares, promi- nent nasal bridge, soft cleft palate or bifid uvula, posteriorly rotated and low-set ears, micrognathia, high-arched hard palate, and microcephaly (Kelley and Hennekam 2000). Potential ocular

high-arched hard palate, and microcephaly (Kelley and Hennekam 2000). Potential ocular abnormalities include cataracts, underdevelop- ment of the optic nerve, ptosis epicanthus, unequal palpebral fissures, and convergent stra- bismus. Other central nervous system (CNS) anomalies include agenesis or hypoplasia of the corpus callosum or cerebellum, increased ventric- ular size, and decreased size of frontal lobes (Nowaczyk and Tierney 2004). In the more severely affected individuals, there may be

frontal lobes (Nowaczyk and Tierney 2004). In the more severely affected individuals, there may be lethal brain defects such holoprosencephaly (seen in about 5%) and incomplete myelination (Jira et al. 2003). Structural abnormalities include callosal abnormalities, a Dandy-Walker variant, an arachnoid cyst, and holoprosencephaly (Caruso et al. 2004). The individuals may have severe language impairment (Kelley 1996; Nwokoro and Mulvihill 1997; Tierney et al. 2000, 2001, Tierney et al. 2001; Tint

(Kelley 1996; Nwokoro and Mulvihill 1997; Tierney et al. 2000, 2001, Tierney et al. 2001; Tint et al. 1994), with greater receptive than expressive lan- guage abilities (Kelley 1996; Tierney et al. 2001). Nwokoro and Mulvihill (1997) described a sleep disturbance and Ryan et al. (1998) studied 23 bio- chemically confirmed subjects aged 6 months and older and found that 70% had a sleep cycle dis- turbance that usually did not respond to sedatives. Individuals with SLOS have also been described as

that usually did not respond to sedatives. Individuals with SLOS have also been described as “hyperactive” (Elias and Irons 1995; Opitz 1999b), and attention deficit hyperactivity disor- der was diagnosed in one child, who was reported to have a positive clinical response to treatment with methylphenidate (Nowaczyk et al. 1998).

Abnormal aggression occurred in 35 of 56 subjects (63%) in a repeated manner sometime in the past or present, and 89% of individuals with SLOS had repeated self-injury, 54% had self-biting, 48% had head banging, and 54% had opisthokinesis (a highly characteristic arched backward diving motion of the upper body often resulting in the child’s hitting an object). An additional 7 subjects (13%) did not demonstrate the characteristic opisthokinesis but did arch their neck backward frequently, while

demonstrate the characteristic opisthokinesis but did arch their neck backward frequently, while 17 (30%) did neither (Tierney et al. 2001). Over half of 17 subjects with SLOS meet Autism Diagnostic Interview (ADI-R) and DSM-IV diagnostic criteria for autism (Tierney et al. 2001), and in another study of 14 SLOS subjects, approximately three-fourths (71–86% depending upon the evaluation method) met the criteria for some variant of ASD, with 50% having met the criteria for autism (Sikora et al.

the criteria for some variant of ASD, with 50% having met the criteria for autism (Sikora et al. 2006). The characteristic irritability of SLOS con- tinues throughout life, with aggression reported in both children and adults (Pauli et al. 1997; Ryan et al. 1998). Tierney et al. (2001) found that a group of 30 individuals with SLOS, ages 3.2–32.4 years, had auditory, oral, visual, and tactile processing difficulties (sensory hyper- reactivity/hypersensitivity) that was greater than 2 standard

difficulties (sensory hyper- reactivity/hypersensitivity) that was greater than 2 standard deviations from the mean observed with a group of typical subjects (Dunn and Westman 1997), and had statistically greater dif- ficulties with these behaviors than typical subjects (Dunn and Westman 1997), subjects with atten- tion deficit hyperactivity disorder (Bennett and Dunn 1996), Asperger disorder (W. Dunn, per- sonal communication, 1999), autistic disorder (Kientz and Dunn 1997), and other

(W. Dunn, per- sonal communication, 1999), autistic disorder (Kientz and Dunn 1997), and other developmental disorders (Ermer and Dunn 1998). Such injuries frequently present and was found upon interview that 89% of subjects had a history of self-injury at some time and that 68% had self-injury within the prior month including less injurious behaviors such as skin picking, and the Nisonger-CBRF scale demonstrated a self-injury rate of 83% that occurred within the 2 months prior to assessment

scale demonstrated a self-injury rate of 83% that occurred within the 2 months prior to assessment (Tierney et al. 2001).

Evaluation and Differential Diagnosis Professional organizations such as the American Academy of Neurology and the Child Neurology Society are recommending screening for bio- chemical and genetic disorders that are associated with ASDs (Filipek et al. 2000). A clinical diag- nosis of SLOS or suspected mild SLOS can be confirmed by biochemical testing. An elevated plasma 7DHC level relative to the cholesterol level establishes the diagnosis, although 7DHC levels can also be measured in other

the cholesterol level establishes the diagnosis, although 7DHC levels can also be measured in other tissues. Fur- thermore, although the majority of individuals with SLOS have lower than normal cholesterol levels, approximately 10% of affected individuals diagnosed clinically and biochemically with SLOS have normal total cholesterol levels and only mildly elevated levels of 7DHC (Irons 2007), particularly those who have a milder phe- notype or are older (Kelley 1995). Thus, a normal value for

those who have a milder phe- notype or are older (Kelley 1995). Thus, a normal value for plasma cholesterol does not exclude the diagnosis of SLOS. Also, different laboratories may report the 7DHC results in either milligrams per deciliter, micrograms per milliliter, or milli- moles per liter (Irons 2007). Some neuroleptic medications for the treat- ment of behavioral and psychiatric disorders inter- fere with the activity of enzyme DHCR7 and mildly lower the production of cholesterol. This may

fere with the activity of enzyme DHCR7 and mildly lower the production of cholesterol. This may lead to false-positive test results. Molecular genetic testing and/or fibroblasts testing is needed to clarify the diagnosis in those individuals. More than 120 mutations in SLOS have been described (Correa-Cerro and Porter 2005; Yu and Patel 2005).

Genetic Counseling Due to the autosomal recessive nature of the dis- order, each sibling of an affected individual should be tested as there is a 25% chance that an offspring will be affected, a 50% chance of being an asymptomatic carrier, and a 25% chance of being unaffected and not a carrier (Irons 2007). Carriers are heterozygotes for SLOS and are not at risk of developing the disorder and do not have abnormal cholesterol levels. Biochemical testing of fibroblasts has been used for carrier

not have abnormal cholesterol levels. Biochemical testing of fibroblasts has been used for carrier detection (Shefer et al. 1997), as has molecular carrier test- ing if the DHCR7 mutations in the family are known. For evaluation of the affected individual, in addition to biochemical testing, molecular genetic testing is used. Most affected individuals are compound heterozygotes for two different abnormal alleles, with an overall mutation detec- tion rate of 96% (Witsch-Baumgartner et al. 2001).

alleles, with an overall mutation detec- tion rate of 96% (Witsch-Baumgartner et al. 2001). It has been hypothesized that the other mutations that are not detected on molecular test- ing are due to mutations that regulate the tran- scription or function of the gene product (Correa-Cerro and Porter 2005). Biochemical test- ing or molecular genetic testing can be used for prenatal pregnancies (Irons 2007). Knowing the specific mutation mutations that the parents carry can help to assess for risks

2007). Knowing the specific mutation mutations that the parents carry can help to assess for risks in the affected off- spring. For pregnancies of carriers in families that may result in SLOS, diagnostic elevation of 7DHC levels may be assessed for in amniotic fluid obtained by amniocentesis (Abuelo et al. 1995; Dallaire et al. 1995; Rossiter et al. 1995) or in tissue obtained from chorionic villus samples (CVS) (Mills et al. 1996; Sharp et al. 1997). In fetuses who have a family history of a

samples (CVS) (Mills et al. 1996; Sharp et al. 1997). In fetuses who have a family history of a mild variant form of SLOS, the 7DHC enzyme deficiency will need to be demonstrated in cultured amniocytes (Irons 2007).

Treatment Cholesterol is needed not only for myelination, neuroactive steroid synthesis, and cell wall struc- ture in the body but is also needed for modulation of the oxytocin receptor, serotonin receptors, and the G-proteins that are necessary for other neuro- transmitter function (Bukelis et al. 2007; Lee and Tierney 2011). The current standard treatment for SLOS is to begin dietary cholesterol supplemen- tation as soon as this condition is diagnosed. Cho- lesterol is supplied in natural

supplemen- tation as soon as this condition is diagnosed. Cho- lesterol is supplied in natural form (egg yolk, cream, liver) or as a purified cholesterol suspen- sion; the dosing for the cholesterol suspension typically is started in the range of 40–50 mg/kg/ day up to 150 mg/kg/day for maintenance treat- ment (Linck et al. 2000). Cholesterol supplemen- tation improves the ratio of cholesterol to total sterols (Elias et al. 1997; Irons et al. 1997; Nwokoro and Mulvihill 1997) and can decrease

total sterols (Elias et al. 1997; Irons et al. 1997; Nwokoro and Mulvihill 1997) and can decrease 7DHC levels (Linck et al. 2000). Tube feeding is often required in infants and younger children because of feeding difficulties. Medical and surgical management of gastro- esophageal reflux may be needed. During severe acute illness (e.g., infections) or following major surgical procedures, patients with SLOS may develop overt adrenal insufficiency requiring fresh frozen plasma as a source of

with SLOS may develop overt adrenal insufficiency requiring fresh frozen plasma as a source of cholesterol.

Treatment of individuals with SLOS with die- tary cholesterol supplementation has resulted in limited clinical effects and benefits. Yet, clinical anecdotal reports and open-label studies with cho- lesterol treatment in children with SLOS have demonstrated reductions in the number of infec- tions, decreased rashes (Elias et al. 1997), reduced photosensitivity (Azurdia et al. 2001; Elias et al. 1997; Starck et al. 2002), and improved speech articulation (Irons et al. 1997). In a study of six

1997; Starck et al. 2002), and improved speech articulation (Irons et al. 1997). In a study of six children with SLOS (from birth to 11 years) receiving cholesterol supplementation, Elias et al. (1997) reported that all of the six children had decreased problem behaviors, better tolerance of infection, improvement of gastrointestinal symptoms, as well as the improvement in photo- sensitivity, rashes, and infections noted above. After cholesterol supplement is begun, individ- uals had decreased

and infections noted above. After cholesterol supplement is begun, individ- uals had decreased irritability (Elias and Irons 1995; Nwokoro and Mulvihill 1997), a happier affect (Irons et al. 1995; Nwokoro and Mulvihill 1997; Pauli et al. 1997; Opitz 1999b), decreased hyperactivity with improved attention (Elias and Irons 1995), and decreased self-injury. Other behaviors reported to improve with cholesterol supplementation include aggressive behaviors (Nwokoro and Mulvihill 1997; Ryan et al.

cholesterol supplementation include aggressive behaviors (Nwokoro and Mulvihill 1997; Ryan et al. 1998), temper outbursts, trichotillomania, and tac- tile defensiveness (Nwokoro and Mulvihill 1997). In order to retrospectively compare the behaviors that occurred before and after cholesterol supple- mentation began, a Parenting Global Rating Form was completed by the parents of 44 subjects who began cholesterol supplementation after early infancy. The parents of 6 subjects (12%) said that there

cholesterol supplementation after early infancy. The parents of 6 subjects (12%) said that there was no change in behavior following treatment with cholesterol. For the remaining 38 subjects (75%) for whom the parents saw behavioral change after cholesterol treatment was initiated, the mean score was 7.9 ± 1.7 on a scale of 1 (terrible) to 10 (excellent), indicating that they believed that cholesterol supplementa- tion had a very positive effect on average (Tierney et al. 2001). Kelley and

supplementa- tion had a very positive effect on average (Tierney et al. 2001). Kelley and Hennekam (2000) also reported that irritability and sleep disorders improved rapidly after initiation of therapy in contrast to other behavioral issues such as tactile sensitivity which improved over a longer period of time. Furthermore, consistent with what is described by many caretakers, they also reported that behavioral abnormalities return when dietary cholesterol therapy is interrupted. Martin et

that behavioral abnormalities return when dietary cholesterol therapy is interrupted. Martin et al. (2001), in a case report, described significant improvement in hyperactivity, aggression, and self-injurious behavior within 48 h of initiating dietary cholesterol therapy.

Elias et al. (1997) reported in six children that all demonstrated improved growth and more rapid progress in development after cholesterol supple- mentation was begun, with increased pubertal progression in the older subjects. In contrast, how- ever, in a longitudinal study of cognitive, motor, and adaptive developmental progress in 14 youths with SLOS receiving cholesterol supplementa- tion, Sikora et al. revealed that despite dietary cholesterol supplementation, developmental quo- tients

Sikora et al. revealed that despite dietary cholesterol supplementation, developmental quo- tients did not improve over time (Sikora et al. 2004). Similarly, in a double-blinded placebo- controlled, crossover trial in ten individuals with SLOS, Tierney et al. (2010) found no short-term behavioral effects of dietary cholesterol supple- mentation. The disparities in clinical improve- ments demonstrated by these studies may be related to the absence of a direct cholesterol trans- port mechanism

by these studies may be related to the absence of a direct cholesterol trans- port mechanism across the blood-brain barrier (Lee and Tierney 2011). It is possible that supple- mentation with cholesterol beginning in infancy or early childhood may improve cognitive out- comes in SLOS patients. But, to date, no positive effect of cholesterol supplementation on cognitive development has been found in a controlled pro- spective study. Although Sikora et al. (2004) found that the developmental

in a controlled pro- spective study. Although Sikora et al. (2004) found that the developmental status of SLOS did not improve over time with cholesterol supple- mentation, it is possible that supplementation with cholesterol beginning in infancy or early childhood may improve cognitive outcomes in individuals with SLOS. Dietary cholesterol therapy may impact the development of or presentation of autistic fea- tures. Individuals with SLOS treated with choles- terol have been reported to be more

autistic fea- tures. Individuals with SLOS treated with choles- terol have been reported to be more sociable, including initiating hugs and being more interac- tive (Irons et al. 1995; Ryan et al. 1998). Of subjects with SLOS who began cholesterol sup- plementation before the age of 5.0 years (9/17), 22% met the criteria for autism at ages 4.0–5.0 years while on supplementation, whereas, of the 8 subjects not supplemented with choles- terol before age 5.0 years, 88% met the criteria for autism

subjects not supplemented with choles- terol before age 5.0 years, 88% met the criteria for autism at ages 4.0–5.0 years while not on supple- mentation (Tierney et al. 2001). Although these findings are retrospective and in a small popula- tion, they suggest that cholesterol supplementa- tion might have decreased the severity ASD symptoms that would have occurred. Further- more, no side effects have been reported with cholesterol treatment, which has been in use for about 15 years, serum

have been reported with cholesterol treatment, which has been in use for about 15 years, serum cholesterol levels are rarely normalized, and elevated 7DHC levels persist. There is data that suggests 7DHC has some toxic effects in that 7DHC increases the degradation of HMG CoA reductase (resulting in lower sterol levels) (Fitzky et al. 2001) and that 7DHC impairs intracellular cholesterol transport (Wassif et al. 2002). O’Brien et al. (2002) suggested in a rat model that correction of the SLOS

(Wassif et al. 2002). O’Brien et al. (2002) suggested in a rat model that correction of the SLOS CNS biochem- ical defect is associated with return of a normal eye-blink response. Multiple lines of evidence suggest that statins, a class of medications used to lower cholesterol in those with abnormally high levels, may improve DHCR7 activity, resulting in increased choles- terol levels in individuals with mild DHCR7 defi- ciency (Jira et al. 2000), in human fibroblasts from mildly affected

with mild DHCR7 defi- ciency (Jira et al. 2000), in human fibroblasts from mildly affected individuals (Wassif et al. 2005), and in an SLOS mouse model (Correa-Cerro et al. 2006). The mechanism by which statins may increase plasma cholesterol is hypothesized to result from increased expression of a DHCR7 allele that encodes a mutant enzyme with residual enzymatic function and is supported by in vitro experiments using SLOS fibroblasts (Wassif et al. 2005). Mildly to moderately raised levels of

vitro experiments using SLOS fibroblasts (Wassif et al. 2005). Mildly to moderately raised levels of 7DHC have been found in three psychiatric patients with- out SLOS who were treated with haloperidol (Nowaczyk and Tierney 2004), with 7DHC levels directly proportional to the dose of haloperidol. 7DHC levels decreased to normal upon haloperi- dol discontinuation, although it is unknown if an increase in the 7DHC level would have a beneficial or a deleterious effect. However, the benefits of these

in the 7DHC level would have a beneficial or a deleterious effect. However, the benefits of these medications for behavioral treat- ment may outweigh the potential risks of lowering cholesterol synthesis. If the behavioral and learn- ing deficits reported in SLOS are related to alter- ations in sterol composition, rather than fixed developmental defects, then therapeutic interven- tions designed to alter brain sterol composition may be effective in improving behavioral symp- toms (Aneja and Tierney

brain sterol composition may be effective in improving behavioral symp- toms (Aneja and Tierney 2008).

Social Behaviors and Social Impairment Cheryl Dissanayake Olga Tennison Autism Research Centre, La Trobe University, Melbourne, VIC, Australia

Definition Social behaviors encompass all behaviors used to interact and communicate with other people. These comprise behaviors as simple as looking at another and smiling at them to more complex behaviors such as entering into a crowded room with a group of strangers and beginning to interact with them. Many of these behaviors, from the most simple to complex, are challenging for peo- ple with an autism spectrum disorder (ASD). Impairments in the development of social behav- ior, or social

an autism spectrum disorder (ASD). Impairments in the development of social behav- ior, or social impairments, lie at the heart of autism.

Historical Background Impairments in social behaviors have been noted from Leo Kanner’s (1943) original obser- vations, on which he based his first detailed account of 11 cases of autism. He observed the failure of these children to interact with other people in the usual way, with many pre- ferring to be alone. He wrote about their failure to look at other people and to even notice their presence/absence, such that “Comings and goings, even of the mother, did not seem to register” and “The

such that “Comings and goings, even of the mother, did not seem to register” and “The father or mother or both may have been away for an hour or a month; at their homecoming, there is no indication that the child has been even aware of their absence.” Impairments in social interaction and behavior have continued to be considered at the heart of autism, with the various iterations of the DSM (from 1980 onward) including persistent diffi- culties in social interaction as one of the core diagnostic

1980 onward) including persistent diffi- culties in social interaction as one of the core diagnostic features.

Current Knowledge The lack of social reciprocity, considered a core underlying feature of ASDs, is evident from the period of infancy (Barbaro and Dissanayake 2009) and persists throughout development and into adulthood (Taylor and Seltzer 2010; Howlin et al. 2013). Early forms of social impairment are evident in the failure to engage in reciprocal en face interactions with the caregiver(s) comprising behaviors such as eye gaze, affect sharing, and bouts of mutual facial and gestural

comprising behaviors such as eye gaze, affect sharing, and bouts of mutual facial and gestural imitation. These early dyadic behaviors culminate in social routines like peek-a-boo-type games in typical development, which are mutually rewarding for both social partners. The early deficits in dyadic interactions in autism during infancy lead to concomitant diffi- culties in triadic interactions, such as engaging in joint attention (shared gaze/affect with a social partner and an object/event of

as engaging in joint attention (shared gaze/affect with a social partner and an object/event of mutual interest) and social referencing. The use of social gestures, such as pointing and waving, typical in pre- linguistic children, is also infrequent. Impair- ments in empathic responding and the early developing positive social behaviors like helping and sharing (collaborative prosocial behaviors) ensue. However, despite these early developing difficulties in social engagement and responding, it

ensue. However, despite these early developing difficulties in social engagement and responding, it is important to note that children with autism develop attachments to their caregivers, which are functionally and qualitatively similar to those of their non-autistic peers (Chandler and Dissanayake 2014).

In early childhood, there is little initiation of social interactions with other people, which becomes clearly evident during the preschool years, in interacting with peers. Children with an ASD are usually found on the periphery of social activity with little social play evident (Macintosh and Dissanayake 2006). Solitary play is the norm unless the child is directly engaged in an interac- tion with a mature play partner. As a result, peer relationships are limited and, when evident, center

with a mature play partner. As a result, peer relationships are limited and, when evident, center around the more narrow interests of the children with an ASD. Thus, friendships are infrequent among these children, leading to missed opportu- nities to use and practice their social behaviors and skills. The capacity to form and maintain relationships with peers is a crucial developmental task for children, and impairment in this ability is still recognized as a core feature of ASDs (DSM 5,

for children, and impairment in this ability is still recognized as a core feature of ASDs (DSM 5, 2013). The development of perspective-taking skills, critical to the development of social relation- ships, is compromised in autism. Turn taking in interactions is difficult. Taking another’s affec- tive and/or cognitive perspective is crucial to understanding other people as well as under- standing the self in relation to others. Indeed, the development of selfhood in autism is atypical which

the self in relation to others. Indeed, the development of selfhood in autism is atypical which lies at the core of their social-cognitive difficulties (Hobson 1990; Lombardo et al. 2010). The development of social understanding and social responsiveness is deeply intertwined, and each is compromised in autism. It is impor- tant to note that it is not just a lack of social behaviors but also knowledge of how and when to use what social behavior and skills have been acquired that leads to the

of how and when to use what social behavior and skills have been acquired that leads to the marked social impair- ment in autism.

The direct consequence of the social interac- tion difficulties, particularly found among more able children and adolescents with an ASD, is social isolation and peer rejection, leading to poor social support and reported loneliness (Bauminger et al. 2003). Often, these higher- functioning individuals report a desire for friend- ships but lack the necessary social skills to go about establishing them. The commonly reported mood (depression and anxiety) problems in these individuals, especially

them. The commonly reported mood (depression and anxiety) problems in these individuals, especially common during adoles- cence and adulthood (Hedley et al. 2017), are likely to be exacerbated by their social difficulties.

Future Directions Given the centrality of social impairment in ASDs, the teaching of social behaviors and skills comprises an important component in any inter- vention program, regardless of age and ability level (White et al. 2007). In addition to teaching social behaviors and skills, a key component of any intervention program is to motivate affected individuals to interact socially with others. The development of social competence relies on this. More research is sorely needed on the

others. The development of social competence relies on this. More research is sorely needed on the efficacy/ effectiveness of intervention programs designed to enhance the social behaviors and skills of infants, children, adolescents, and adults with an ASD. These lifelong developmental disorders are likely to demand developmentally appropriate social intervention treatments that change to accommodate the particular life stage. As with all interventions, treatment efficacy will be enhanced if

the particular life stage. As with all interventions, treatment efficacy will be enhanced if these begin at the earliest possible time in development.

Social Camouflaging in Adults with ASD Laura Hull and William Mandy Research Department of Clinical, Educational and Health Psychology, University College London, London, UK
Definition A description of the construct of camouflaging (minimizing the appearance of autistic characteris- tics during social interactions) and current literature.

Historical Background The earliest known record of the concept of camouflaging in the academic literature comes from the seminal work of Lorna Wing, who described autistic girls without intellectual dis- ability, who appeared to have better social and communication abilities than comparable males, and so were likely to be missed in clinical assess- ments (Wing 1981a). As part of this “camouflag- ing hypothesis,” she also described examples of both males and females learning social rules, which

ing hypothesis,” she also described examples of both males and females learning social rules, which might result in apparently typical social behavior despite underlying difficulties (Wing 1981b). However, the concept of some autistic individuals having superficially improved social skills was not considered in depth by academics for many years afterward.

Meanwhile, both clinicians and autistic indi- viduals themselves described case studies of indi- viduals learning to “pretend to be normal” (Holliday Willey 2015). These accounts often focused on females in particular, and suggested that using specific, learned strategies might mask the appearance of social difficulties in autistic females, and thus make it harder to identify their autism (Kopp and Gillberg 1992). Other clinicians identified or suggested specific camouflaging behaviors, such as

and Gillberg 1992). Other clinicians identified or suggested specific camouflaging behaviors, such as suppressing repetitive hand movements, giving scripted answers while chat- ting, or staying close to others without actually interacting (Gould and Ashton-Smith 2011; Kreiser and White 2014; Lai and Baron-Cohen 2015; Mandy and Tchanturia 2015), although none of these were tested in large-scale, high- quality studies. The implied consequence of these behaviors was that they made identification of

quality studies. The implied consequence of these behaviors was that they made identification of difficulties harder by teachers or clinicians, even if the individual themselves or their parents may be aware of difficulties (Mandy et al. 2012). Most of these studies focused on camouflaging in females, as part of the consideration of the female autism phenotype, or a female-specific behavioral expression of autism (Lai et al. 2011).

It was suggested that autistic females might have more social reinforcements or expectations to adapt their behaviors depending on the social environment (Kreiser and White 2014). A complementary approach at the same time suggested that there may be genetic protective effects which allowed females to compensate for some autistic difficulties, with the possibility of not requiring an autism diagnosis (Dworzynski et al. 2012). The first studies to explicitly examine the con- cept of camouflaging

(Dworzynski et al. 2012). The first studies to explicitly examine the con- cept of camouflaging were qualitative, and mostly based around interviews with autistic girls, women, and their parents. More strategies were identified, such as mimicking peers’ social behav- iors (Cridland et al. 2014), or developing coping strategies to attempt to deal with the exhausting social world (Tierney et al. 2016). Some autistic women suggested that their camouflaging or masking strategies made it harder for them

Some autistic women suggested that their camouflaging or masking strategies made it harder for them to receive a diagnosis, as clinicians did not under- stand they were masking some of their symptoms (Bargiela et al. 2016; Milner et al. 2019). These studies all supported the idea that camouflaging may be a mostly female behavior, with gendered consequences for diagnosis and outcomes. Lai and colleagues (2017) were some of the first to operationalize camouflaging, using a so-called “discrepancy”

(2017) were some of the first to operationalize camouflaging, using a so-called “discrepancy” approach. Camouflaging can be measured as the discrepancy between an individual’s internal autistic status, and their external autistic presentation. By measuring camouflaging in this way in a mixed gender adult sample, Lai and colleagues demonstrated that camouflaging can occur in both males and females and that there is substantial individual variation in the extent of camouflaging. However, camouflaging is

there is substantial individual variation in the extent of camouflaging. However, camouflaging is on average greater (discrepancy scores were higher) in autistic adult females than males. A complementary measurement approach, used by Hull et al. (2017), operationalized camouflaging based on the self-reported experi- ences of autistic adults, known as an observa- tional/reflective approach. In this large qualitative study, the vast majority of autistic adult males, females, and individuals of non-

qualitative study, the vast majority of autistic adult males, females, and individuals of non- binary gender described using camouflaging strat- egies at some point in their lives. This analysis produced a conceptual model of camouflaging, including its motivations, strategies, and conse- quences, which has informed subsequent research.

Current Knowledge Camouflaging is conceptualized as the process of “hiding behaviour that might be viewed as socially unacceptable or artificially ‘performing’ social behaviour deemed to be more neurotypical” (Lai et al. 2017). It can be deliberately learned, such as gradually reducing stimming behaviors, or automatically performed, for instance, mimicry of others’ speech patterns (Hull et al. 2017). As a relatively new topic of research interest, current knowledge is developing rapidly and the

As a relatively new topic of research interest, current knowledge is developing rapidly and the specific characteristics of camouflaging are still being determined. Motivations for camouflaging include short- term or functional aims, such as performing well in a job interview or avoiding bullying from others, in addition to longer-term and relational aims, such as developing friendships (Cage and Troxell-Whitman 2019; Hull et al. 2017). It is still unclear to what extent these aims are achieved,

2019; Hull et al. 2017). It is still unclear to what extent these aims are achieved, and which abilities may be needed for successful camouflaging. However, individ- uals who camouflage deliberately may reflect on their camouflaging strategies in order to better achieve their aims (Hull et al. 2017), while those who are not aware of their use of camouflaging strategies may not be able to manipulate their behaviors.

Strategies for camouflaging have been identi- fied or reported through a variety of mechanisms. Studies following the discrepancy approach described above have measured the extent of camouflaging as the discrepancy between mentalizing abilities and ADOS score (Lai et al. 2017, 2018; Schuck et al. 2019), between theory of mind and ADOS score (Livingston et al. 2018), and between parent-reported autistic traits and various behaviors associated with autism (Boorse et al. 2019; Parish-Morris et al.

traits and various behaviors associated with autism (Boorse et al. 2019; Parish-Morris et al. 2017; Ratto et al. 2018; Rynkiewicz et al. 2016). While this enables comparison of camouflaging between groups, it is harder to identify specific instances of camouflaging in real life. Studies following an observational/reflective approach have identified specific camouflaging strategies, either through behavioral observation (Dean et al. 2017) or through self-reported camouflaging (Cage and Troxel-Whitman

observation (Dean et al. 2017) or through self-reported camouflaging (Cage and Troxel-Whitman 2019; Hull et al. 2018). Examples of these strategies include playing next to, but not with, other chil- dren; developing a script for social situations; and learning social behaviors from others. Camouflag- ing can be measured using the psychometrically validated self-report Camouflaging Autistic Traits Questionnaire (CAT-Q) in adults. Although there may be beneficial aims associ- ated with camouflaging,

(CAT-Q) in adults. Although there may be beneficial aims associ- ated with camouflaging, most studies report neg- ative consequences of camouflaging. Autistic individuals have self-reported experiencing exhaustion, mental health difficulties such as anx- iety or loneliness, and feeling inauthentic (Hull et al. 2017; Milner et al. 2019; Tierney et al. 2016; Tint and Weiss 2018). Quantitative measures of camouflaging have shown positive associations with depression, anxiety, and suicidal ideation

of camouflaging have shown positive associations with depression, anxiety, and suicidal ideation (Cassidy et al. 2018; Hull et al. 2018; Lai et al. 2017). In addition, camouflaging has been pro- posed as a factor preventing autistic girls and women in particular from receiving an accurate and timely diagnosis (Bargiela et al. 2016; Hull et al. 2017). Researchers have recently begun to examine gender differences in autistic camouflaging. Discrepancy-based studies have generally found that females

differences in autistic camouflaging. Discrepancy-based studies have generally found that females have a higher discrepancy between internal and external autistic experiences, resulting in greater internal experience of autistic characteristics, but lesser external presentation of autism compared to males (Lai et al. 2017; Ratto et al. 2018). However, the proportion of autistic adult males and females who report having camouflaged does not appear to differ; the vast majority of autistic adults of

who report having camouflaged does not appear to differ; the vast majority of autistic adults of all genders report having camouflaged at some point in their lives (Cage et al. 2018; Cassidy et al. 2018; Hull et al. 2017). Research using self-report measures reveals mixed findings so far (Cage and Troxell- Whitman 2019; Cassidy et al. 2018; Hull et al. 2019).

Future Directions Although the field of camouflaging research has expanded dramatically since 2015, this is still a very new area with many future directions for research. All research has so far taken place in Western cultures, therefore estimates of the preva- lence, consequences, and potential gender differ- ences in camouflaging in other cultures need to be identified. Research has also been limited to autistic individuals without intellectual disability; although it has generally been assumed

to autistic individuals without intellectual disability; although it has generally been assumed that individuals with intellectual disability or minimal language do not camouflage, this needs to be actively tested. Camouflaging is also likely to vary across sit- uations, and across developmental stages, within individuals. Longitudinal studies are necessary to identify when and how camouflaging first develops; most research has focused on adults but some studies have identified camouflaging in

first develops; most research has focused on adults but some studies have identified camouflaging in adolescents and younger children. Earlier identi- fication of camouflaging can help researchers understand how camouflaging develops across time, and how consequences for mental health arise and, potentially, can be addressed. Larger scale samples using a variety of methods are needed to systematically answer questions concerning gender differences in autism; once these studies are available, meta-

answer questions concerning gender differences in autism; once these studies are available, meta- analytic techniques will be useful to integrate multiple different studies to give a more definitive answer. Although some research into camouflag- ing has included non-binary people (Cage and Troxell-Whitman 2019; Hull et al. 2017, 2019), there are still many gaps in our understanding of camouflaging by transgender and non-binary indi- viduals, and how gender identity interacts with autistic

by transgender and non-binary indi- viduals, and how gender identity interacts with autistic identity. Future directions for clinical research should focus on implications for diagnosis and interven- tions. Longitudinal studies identifying partici- pants pre-assessment can help us understand the role camouflaging plays in the diagnostic process, particularly for females. Many social skill inter- ventions, particularly those advocated for younger children, promote social strategies similar to

ventions, particularly those advocated for younger children, promote social strategies similar to camouflaging, such as forced eye contact. It is still unclear to what extent camouflaging overlaps with these strategies, but the mental health prob- lems associated with camouflaging suggest that more research is needed to evaluate the longer- term implications of deliberately learned social strategies.

Social Class and Autism James Hyun Lee Mayo Clinic School of Medicine, Rochester, MN, USA Definition Social class, also deemed socioeconomic status, is a categorization of a group or individual within an established hierarchical social structure based on factors such as education, income, occupation, financial stability, and location. In statistical ana- lyses, social class can be used as an independent variable when analyzing large populations and is often reduced to a select few variables

variable when analyzing large populations and is often reduced to a select few variables (e.g., net income, gross income, parental education, prop- erty value, nature of labor) for statistical purposes. Social class often plays a significant role in the etiology of a disease, and lower socioeconomic status tends to correlate with higher rates of inci- dence and severity. Autism spectrum disorder (ASD) has a more complex intersection with social class than most other diseases, likely attributed

(ASD) has a more complex intersection with social class than most other diseases, likely attributed to its large variance of symptoms between different patients and the fact that mental illness is more difficult to track and study than physical. There is no official consensus within the field concerning the prevalence of ASD in one social class over another, as multiple studies and statistical analyses have yielded contradictory results from their various populations. However, socioeconomic status

have yielded contradictory results from their various populations. However, socioeconomic status undoubtedly has profound impacts on the diagnosis, severity, and treatment of autism, in which individuals from lower social classes tend to have later diagnoses, harsher symptoms, and less access to psychological and pharmacological treatments. As a result, social class is an important factor to consider when studying autism, especially when studying the efficacy of interventions.

Historical Background Social class became an established concern sur- rounding autism when it was first introduced by Leo Kanner’s hallmark study (1943) of 11 children exhibiting antisocial symptoms. Each one of these children came from a wealthy family with highly educated parents, and the public eye speculated that autism may be a “rich man’s disease.” Throughout the following decades, especially the 1960s, multiple reviews of different populations in America and Europe continued the

especially the 1960s, multiple reviews of different populations in America and Europe continued the narrative that autism diagnoses were more prevalent in wealthy and middle-class families than those of the lower classes. In the following two decades, the narrative began to shift, where studies heralded results find- ing no differences in autism rates between the socioeconomic classes. This literature primarily emerged from the United States, which had varied healthcare policies across different

primarily emerged from the United States, which had varied healthcare policies across different states. More recently, landmark studies from Denmark (Larsson et al. 2005) and Sweden (Rai et al. 2012) explored the effects of a universal healthcare system on the prevalence of ASD. Uni- versal healthcare bridges some (but not all) of the inequities that lower social classes face by provid- ing equal access to healthcare regardless of socio- economic position. By using a variety of variables that

access to healthcare regardless of socio- economic position. By using a variety of variables that measured socioeconomic status, Larsson et al. (2005) concluded that social class played “little or no role in the etiology of autism in Denmark,” whereas the equivalent study in Swe- den (Rai et al. 2012) concluded that more children in lower social classes are diagnosed with ASD than those in higher classes. To this day, there is still no consensus among psychologists and sociologists about ASD’s

classes. To this day, there is still no consensus among psychologists and sociologists about ASD’s prev- alence in certain social classes over others and how it interacts with the disorder’s etiology. This phenomenon is due to the fact that across separate studies and analyses, researchers used different methods when selecting eligible patients, catego- rizing the socioeconomic statuses of families, ana- lyzing the data with various statistical tests, and interpreting those statistics in those

ana- lyzing the data with various statistical tests, and interpreting those statistics in those publications. Further standardized research is required to obtain a clearer vision surrounding how social class can affect the onset of autism.

Current Knowledge Social Class and ASD Diagnosis There is an understanding within the field that families from lower social classes are proportion- ally given fewer ASD diagnoses than higher-class families due to a variety of factors. The most significant factor is that families from lower social classes in systems that do not provide universal healthcare often find themselves in positions where they cannot afford medical appointments. As a result, they do not address pressing or concerning

they cannot afford medical appointments. As a result, they do not address pressing or concerning health necessities because they fear the enormous costs. Proportionally, fewer individ- uals from low-income backgrounds actively seek out healthcare, and they are widely less confident that they could obtain healthcare if necessary (Kirby 2008). These individuals often consider free clinics or clinics for the uninsured as their sole accessible source of healthcare, and these clinics operate on lower

for the uninsured as their sole accessible source of healthcare, and these clinics operate on lower budgets, fewer resources (i.e., language interpreters, appropriate legal/ social services, specialized care), and fewer appropriately educated staff. Additionally, the pri- mary function of these free services are not dedi- cated to psychological disorders, so diagnoses for ASD would be secondary to more noticeable med- ical concerns. Similar lack of access is seen with rural populations that

to more noticeable med- ical concerns. Similar lack of access is seen with rural populations that live hours away from a healthcare professional and even further from someone with psychology expertise. Another factor in the socioeconomic inequality for ASD diagnoses is expressed by the heavy stigma against mental health. For lower classes, psychological health is perceived as a luxury for those who can afford it (Corrigan 2004). These perceptions are further accentuated in non- Western

those who can afford it (Corrigan 2004). These perceptions are further accentuated in non- Western populations, whose cultural identities accentuate weakness if someone is in need of mental health services. Even if this stigma did not exist, education surrounding autism is sparse, and receiving a diagnosis for ASD typically requires active, educated efforts from a patient’s family. Parents of children from lower socioeco- nomic backgrounds are likely to be less educated, more likely to ingrain

from lower socioeco- nomic backgrounds are likely to be less educated, more likely to ingrain stigma around ASD, and less likely to believe that their child has a treatable disorder. Yet another factor is implicit biases found within experts in child psychiatry, who may mis- read symptoms or dismiss patients due to their lower socioeconomic status. Child psychiatrists were more likely to give an ASD diagnosis to a child from a higher class, whereas they were more hesitant to give the same

an ASD diagnosis to a child from a higher class, whereas they were more hesitant to give the same diagnosis to a child from a lower class with identical symptoms, whom they were more likely to diagnose with cultural depri- vation or attentional deficits (Cuccaro et al. 1996). These implicit biases surrounding lower-class populations and resultant misdiagnoses erect bar- riers for poorer families to efficient treatments for ASD, causing further healthcare disparities between the different classes.

Social Class, ASD Severity, and Well-Being A common priority throughout the field surround- ing autism is early diagnosis for children. Later diagnoses lead to later interventions, which can progress to harsher symptoms and greater diffi- culty when attempting to integrate into society. Late diagnoses have also been shown to correlate with higher rates of nonverbal cases and greater antisocial tendencies post-adolescence. Socioeco- nomic status was a stronger predictor for the age of autism

tendencies post-adolescence. Socioeco- nomic status was a stronger predictor for the age of autism diagnosis than the severity of the symp- toms when diagnosed (Fountain et al. 2011), and children with parents of higher education were often diagnosed earlier than those of parents with lower education. Due to the late diagnosis and resultant lack of preventative healthcare, children of parents from lower social classes often face less effective inter- ventions resulting in harsher symptoms that

lower social classes often face less effective inter- ventions resulting in harsher symptoms that are difficult to rectify in adulthood. Also, ASD fre- quently snowballs with various other mental dis- orders such as depression, anxiety, or attentional deficits (Liss et al. 2008), as well as physical diseases like obesity and malnutrition. The crea- tion of an intervention that addresses not only autism but also a mix of mood, attentional, and physical complications may not be possible in many

autism but also a mix of mood, attentional, and physical complications may not be possible in many patients, especially with the extremely severe cases found in children who are diagnosed late. Early diagnosis is inconsequential if the resulting interventions are ineffective, and fami- lies from a lower social class are disadvantaged both in terms of age of diagnosis and intervention efficacy. (For focus on the latter, see section “Social Class and ASD Treatment: Pharmaceuti- cal and

(For focus on the latter, see section “Social Class and ASD Treatment: Pharmaceuti- cal and Behavioral.”) Accompanying low socioeconomic status are other trends that affect the severity of the disor- der. For example, lower amounts of family involvement correlate with greater severity of the disorder (Dunlap 1999). Parents of lower- class families tend to work long hours, especially single parents with multiple children. As a result, the lack of parent involvement in a child’s life can increase

with multiple children. As a result, the lack of parent involvement in a child’s life can increase the severity of his/her symptoms, which can also harm the development of self- determination and well-being of the adolescent (Dunlap 1999). ASD also augments the severity of ailments in other, more specialized realms of health, a phe- nomenon exemplified by dental care. Dentistry is inherently invasive and requires a stationary patient, so children with autism are difficult patients to treat.

invasive and requires a stationary patient, so children with autism are difficult patients to treat. Though research continues in order to make the dentist’s office a more accom- modating place for individuals with ASD (Marshall et al. 2007), many of these patients, especially those with parents of low education, completely neglect dentistry. Similar “luxury” fields of health like optometry, physical therapy, and nutrition counseling are likewise neglected, though they may be necessary for an

therapy, and nutrition counseling are likewise neglected, though they may be necessary for an improved quality of life for the patient. Many guardians who come from uneducated back- grounds fear bringing an individual with ASD into these offices given the stigma of the disorder. Even if they overcome this fear, locating edu- cated, willing physicians and counselors who can administer these services to patients with ASD may also be difficult given the limited resources of a less educated guardian.

to patients with ASD may also be difficult given the limited resources of a less educated guardian. Ultimately, the diagnosis of ASD is a catalyst for important changes in a patient’s life. However, without effective interventions that address both mental and physical diseases that accompany the disorder and basic support systems like a stable family and home, ASD can increase in severity and actively compound with other health deficien- cies to harm a child’s well-being. Families from a lower

compound with other health deficien- cies to harm a child’s well-being. Families from a lower socioeconomic status lack the education, resources, and time to provide their child with these various support and treatment systems, resulting in disproportionately more severe cases attributed to low-income, less-educated families.

Social Class and ASD Treatment: Pharmaceutical and Behavioral The treatment of autism can be expensive and cause significant financial losses as patients undergo vari- ous interventions to treat the disorder. Families from lower classes tend to be barred from empirically tested treatments due to high costs and inconve- niences. Given the difficulties of transportation, loca- tion, and finding sufficient time, in addition to certain stigmas and unconscious bias from healthcare pro- viders against

time, in addition to certain stigmas and unconscious bias from healthcare pro- viders against poorer individuals, families from lower classes are at a disadvantage when it comes to actively treating an individual’s autism. Specifically, some pharmaceuticals for behav- ioral disorders have been empirically tested to alleviate some of ASD’s symptoms (Ratey et al. 1987), and the costs of these pharmacological interventions are often too high for families of lower classes. Although these

pharmacological interventions are often too high for families of lower classes. Although these pharmaceuticals do not address the specific social disabilities of ASD, they can greatly improve the quality of life for both the child and surrounding family mem- bers. However, for families from a lower social class, issues of cost immediately come to mind as they consider these kinds of treatments. Pharma- cological interventions require not only the drugs themselves but also consistent appointments

cological interventions require not only the drugs themselves but also consistent appointments with child psychiatrists and pharmacists. Many fami- lies from lower classes simply cannot keep up with these regular expenses and forfeit their child’s treatment before completing the regimen. Though paid trial sessions for experimental inter- ventions could waive some of the accompanying costs, the field is bioethically critical of allowing populations from lower classes to take the brunt of the

field is bioethically critical of allowing populations from lower classes to take the brunt of the trauma from untested procedures.

On the other side of treatment is active behav- ioral therapy, which consistently demonstrates its efficacy in improving the symptoms of ASD (Reaven et al. 2012). Families of lower social class run into identical problems as those in phar- macological interventions (i.e., lack of transport, low availability of centers/clinics, significant debt from therapy sessions). These regular expenses immediately make individualized therapy inac- cessible to most families in lower classes. Though specific

make individualized therapy inac- cessible to most families in lower classes. Though specific insurance measures have been placed throughout Western countries to allow families from low-income backgrounds to receive healthcare (e.g., free universal healthcare in Europe, Medicaid in the United States), psycho- therapy is still viewed as a luxury (Kataoka et al. 2002). Additionally, many private insurance com- panies do not make provisions for mental health in their coverage, so families from both

com- panies do not make provisions for mental health in their coverage, so families from both lower and middle classes cannot afford psychiatric therapy for their child with ASD. Aside from traditional therapy sessions, inno- vative programs like Ramapo in New York, Chapel Haven in Connecticut, and Camp Talis- man in North Carolina are similarly financially inaccessible for low-income patients. These pro- grams use camp or dormitory settings to promote teamwork and social interactions with

These pro- grams use camp or dormitory settings to promote teamwork and social interactions with others. Need-based scholarships are scarce within these programs, and the vast majority of the students who attend these programs are from wealthy socioeconomic backgrounds who can afford the cost of transitioning into a social world. Combinations of these various treatments – pharmacological, behavioral, and nontraditional – can become extremely expensive, and families who cannot initially afford

and nontraditional – can become extremely expensive, and families who cannot initially afford such programs could develop severe debt. Unlike college educations, a child with ASD is not likely to return on these investments with a consistent job, so these inter- ventions are administered with little chance of recouping finances. As a result, families from different socioeconomic backgrounds address the future of their children with ASD differently. It is possible for therapy to continue through

the future of their children with ASD differently. It is possible for therapy to continue through adulthood, and some individuals with ASD will be able to integrate themselves into a society with regular assistance from a mental health profes- sional. However, many individuals from lower socioeconomic statuses will not improve, espe- cially given the disadvantageous late diagnoses and lower-quality interventions that accompany lower social classes, and families must continue expensive care for

interventions that accompany lower social classes, and families must continue expensive care for the afflicted member. With resources for adults with ASD (e.g., care homes) costing multiple thousands of dollars a year (Carbone et al. 2010), ASD can consume the lives of families from lower social classes even through an afflicted individual’s adulthood.

Future Directions To better understand the intersection of ASD and social class, the field must conduct further research to understand how social class can affect the etiology of autism. In these future studies, standardization of eligible patients, variables cal- culated, and how these variables are interpreted is critical in order to better understand how socio- economic status contributes to autism’s symptoms in individuals. Additionally, there is a consensus in the field that increasing

to autism’s symptoms in individuals. Additionally, there is a consensus in the field that increasing mental health awareness in educa- tional systems worldwide is absolutely critical, especially in low-income neighborhoods. Stan- dardized earlier interventions for autism with rou- tine screenings in all schools would allow for less prevalence of severe ASD in adulthood. Also, this kind of education will foster a culture against bullying toward those with mental disorders in schools (Van Roekel

will foster a culture against bullying toward those with mental disorders in schools (Van Roekel et al. 2010) and increase the quality of afflicted children’s lives. As a result, further studies should explore the most effective ways to raise awareness of ASD for parents of children, expert psychologists, healthcare profes- sionals, teachers, and classmates in order to address mental health as a whole, especially in impoverished areas.

Social Cognition Nirit Bauminger-Zviely School of Education, Bar-Illan University, Ramat-Gan, Israel Definition The mental processes in which individuals are involved with when making sense of the social world, including the understanding of self, others, and the interplay between self and others, are what is called social cognition (Lewis 1999; Beer and Ochsner 2006). Social cognition broadly includes the cognitive processes that enables spontaneous decoding and encoding (provide correct

includes the cognitive processes that enables spontaneous decoding and encoding (provide correct interpre- tation) of verbal and nonverbal social and emo- tional cues, the ability to recognize central and peripheral social and emotional information, the knowledge of different social behaviors and their consequences in diverse social tasks (e.g., social knowledge and understanding), and the ability to make an adequate attribution about another per- son’s mental state (i.e., “theory of mind”

to make an adequate attribution about another per- son’s mental state (i.e., “theory of mind” abilities, Perner and Wimmer 1985), as well as about the self (Crick and Dodge 1994; Lewis 1999). Social cognition, thus, is including information pro- cessing about all people, including the self, and about the norms and procedures of the social world. The knowledge about social norms and procedures is both declarative and procedural. By large, declarative knowledge is what the individual knows about

both declarative and procedural. By large, declarative knowledge is what the individual knows about social concepts, scripts, relations, and phenomena, and procedural knowl- edge is the knowledge of rules, skills, and strate-gies that enables the use of declarative knowledge in order to react or respond efficiently in diverse social situations.

Social Cognitive Interventions Anthony Burns and Latha Soorya Department of Psychiatry, AARTS Center, Rush University Medical Center, Chicago, IL, USA
Department of Psychiatry, Rush University Medical Center, Chicago, IL, USA Synonyms Emotion recognition; Perspective taking; Social learning; Social skills; Social thinking; Theory of mind

Definition Social impairments are among the most recognizable features of autism spectrum disorder (ASD), pre- senting early in infancy and persisting through the lifespan. Reduced affect recognition and difficulty in predicting thoughts and feelings in others are critical features of ASD – particularly in verbal, cognitively able individuals. Advances in social neuroscience led to identification of key neural networks underly- ing social cognition with consistent findings of ASD- specific neural

of key neural networks underly- ing social cognition with consistent findings of ASD- specific neural responses in regions associated with perception of biological motion, face and emotion recognition, and perspective taking. The foundation of advanced social cognitive skills such as perspective taking and empathy lie in early social communication behaviors such as imi- tation and joint attention. Recently, several effica- cious interventions have been established for critical early social

Recently, several effica- cious interventions have been established for critical early social communication behaviors in young chil- dren with ASD. Targeted behavioral interventions for social cognition are emerging and typically uti- lize social group formats. Results from randomized, comparative trials of social cognitive skills groups suggest moderate, short-term effects on informant reports of social behavior and quality of life. How- ever, changes on neuropsychological measures of social

of social behavior and quality of life. How- ever, changes on neuropsychological measures of social cognition are less consistent and with small effects. Pilot, wait-list controlled trials utilizing the- atrical and drama-based group curricula have also been studied with findings of moderate to small effects on behavioral and cognitive outcomes. Technology-based interventions involving gam- ing and virtual reality are also emerging as potential treatments for social cognitive impairments in ASD.

virtual reality are also emerging as potential treatments for social cognitive impairments in ASD. To date, game-based packages for facial processing, knowledge of emotional management strategies, and affect recognition/understanding have shown small effects on task-specific measures, with largely unknown effects on more distal measures, mainte- nance, or generalizability. Taken together, promising targeted social cog- nitive group therapy are in the treatment develop- ment pipeline. Persistent

targeted social cog- nitive group therapy are in the treatment develop- ment pipeline. Persistent concerns about size, generalizability, and durability of treatment effects remain to be addressed. In addition, the complexity and heterogeneity of ASD across development suggests interventions for higher- level skills such as social cognition must target multiple domains. Future research may consider multimodal interventions of empirically supported psychosocial interventions and promis- ing

multimodal interventions of empirically supported psychosocial interventions and promis- ing pharmacotherapies to address complex social, behavioral, cognitive, and psychiatric needs of older children and individuals with ASD.

Social Cognitive Learning Theory Siena Whitham, Lindsey Sterling, Christie Enjey Lin and Jeffrey J. Wood Psychological Studies in Education, University of California, Los Angeles, Los Angeles, CA, USA
Department of Psychiatry, Jane and Terry Semel Institute for Neuroscience and Human Behavior UCLA, Los Angeles, CA, USA
Departments of Education and Psychiatry, Child and Adolescent Psychiatry, University of California, Los Angeles, CA, USA

Departments of Psychiatry and Education, UCLA/Geffen School of Medicine, UCLA Center for Autism Research and Treatment, University of California, Los Angeles, CA, USA

Definition Social cognitive learning theory is a broad- ranging theoretical model of human behavior and is a major contribution to the social and behavioral sciences developed by Albert Bandura. Social cognitive learning theory posits that indi- viduals are active agents in their development, not simply passive observers. In this model, there is a dynamic, continuous interrelationship between an individual’s behaviors, the environment, and intrapersonal factors (i.e., cognitive, affective, and

individual’s behaviors, the environment, and intrapersonal factors (i.e., cognitive, affective, and biological events) during development (Bandura 1986, 1999). The model seeks to explain the determinants of behavior as well as the dynamic conditions that can change behavior over time.

Historical Background Social cognitive learning theory grew from Miller and Dollard’s initial work in the area of social learning theory in 1941. Social learning theory provides a foundation for the development of social cognitive learning theory, embodying the idea that if an individual were motivated to learn a particular behavior, it would be learned through observation and imitation of actions. Social cog- nitive learning theory expanded on this premise and is the product of decades of

Social cog- nitive learning theory expanded on this premise and is the product of decades of research and analysis of human functioning through the lens of learning frameworks. In 1963, Bandura and Walters wrote the seminal work Social Learning and Personality Development, which set forth the most comprehensive and complex account of social learning theory with its emphasis on obser- vational learning and vicarious reinforcement. Social learning theory was a departure from prev- alent models of

and vicarious reinforcement. Social learning theory was a departure from prev- alent models of development of the time, such as psychoanalysis and behaviorism (Grusec 1992). Psychoanalysts described behavior as driven by internal impulses, whereas behaviorists described behavior as completely shaped by the environ- ment (Davis and Luthans 1980; Waller 2004). Social learning theory, while drawing on behav- iorism in some ways, depicted behavior as a prod- uct of both internal factors and

on behav- iorism in some ways, depicted behavior as a prod- uct of both internal factors and environmental factors and was the first major neo-behavior ana- lytic theory to ascribe a role to cognition. Bandura considered observational learning and imitation to be core components of social learning theory (Bandura 1969). Social learning theory posited that observational learning was a more effective method for behavioral change than direct learning or successive approximations (

members along with ABGC diplomates run committees, volunteer as item writers, and supervise genetic counseling training programs.

### Landmark Contributions  The first genetic counseling training program graduated its master’s-level genetic counselors in 1971. Since 1981, the American Board of Medical Genetics (ABMG) had been the body responsible for the certification of genetic counselors. A decade later, the American Board of Medical Specialties recognized genetics as a medical specialty and offered the ABMG an invitation to join. A condition of the membership was that the ABMG was required to exclude non-doctoral-level

to join. A condition of the membership was that the ABMG was required to exclude non-doctoral-level candidates from its certification process. An agreement was made for the formation of the ABGC. On October 23, 1992, the American Board of Genetic Counseling was incorporated to be the new accrediting and credentialing body for the genetic counseling profession. The ABGC saw the opportunity to restructure the accreditation guidelines and the overall approach to accreditation. After carefully

restructure the accreditation guidelines and the overall approach to accreditation. After carefully examining the accreditation practices of other specialties, it elected to accredit entire genetic counseling programs instead of only clinical training sites as had been done previously under the ABMG. In January 1994, a meeting was convened with board members of the ABGC and the genetic counseling program directors. A major objective of the meeting was to draft a set of practice-based

counseling program directors. A major objective of the meeting was to draft a set of practice-based competencies that an entry-level genetic counselor needs to demonstrate to effectively manage a genetic counseling session. These competencies served as the basis for the Requirements for Graduate Programs in Genetic Counseling Seeking Accreditation by the American Board of Genetic Counseling, adopted by the ABGC in January 1996. The 27 competencies are grouped into four domains (communication

by the ABGC in January 1996. The 27 competencies are grouped into four domains (communication skills; critical-thinking skills; interpersonal, counseling, and psychosocial assessment skills; and professional ethics and values). These skills have become the cornerstone for curriculum design for programs seeking to achieve accreditation. The ABGC moved away from the content-driven accreditation process developed under the ABMG with lists of courses and clinical contact hours, to an accreditation

developed under the ABMG with lists of courses and clinical contact hours, to an accreditation model that encourages the development of practice-based skills that integrate knowledge from several disciplines.

With these practice-based competencies, the ABGC can hold the profession to a common set of expectations. The accreditation criteria for training programs are based on the program’s ability to successfully develop these competencies in its genetic counseling graduates. Additionally, ABGC established a recertification requirement for any diplomate certified in 1996 or later. Recertification was initiated to demonstrate a diplomate’s commitment to maintaining knowledge in a rapidly evolving field.

to demonstrate a diplomate’s commitment to maintaining knowledge in a rapidly evolving field. Through the recertification process, the ABGC strives to protect the public by ensuring the continuing education of genetic counselors. Recertification can be achieved in one of two ways: by either successfully passing another board exam or by collecting a specific number of continuing education units and professional activity credits over a specified period. Recertification has also proven significant for

professional activity credits over a specified period. Recertification has also proven significant for genetic counselors for licensing, professional advancement, hospital credentialing, and insurance reimbursement. Since the formation of the ABGC, the number of Certified Genetic Counselors has grown from 495 to over 3,000. The number of accredited graduate training programs has increased from 18 to 33. By accrediting training programs, establishing competencies, and implementing recertification,

33. By accrediting training programs, establishing competencies, and implementing recertification, the ABGC has been working hard to protect the public and promote the ongoing growth and development of practitioners in the genetic counseling profession.

The purpose of the American Congress of Rehabilitation Medicine (ACRM) is to advance service delivery and research for people who have disabling conditions. There are four major areas of focus for this research:
1.  To meet the needs of people with disabilities 2.  Educate providers for best practice delivery of care 3.  Promote the health, independence, quality of life, and productivity of disabled people

4.  To ensure that future research projects are publicly funded  The primary mission of the ACRM is to enhance the lives of disabled people via a multidisciplinary rehabilitation approach. As a leader in the physical medicine and rehabilitation field, their mission is to promote innovative research and new technologies and encourage evidence-based practices in clinical settings as well as encourage information sharing.

#### Leadership role  ACRM creates forums where all rehabilitation professionals, including clinicians, service managers, administrators, educators, and researchers, can innovate. We call upon the leaders in rehabilitation to identify current best practices and best providers at all levels of care, and share this information via educational meetings and the journal.

#### Archives of physical medicine and rehabilitation.  As rehabilitation science and medicine continues to evolve, the goal is to keep the community connected by creating opportunities to exchange and share information with rehabilitation professionals, corporate providers, healthcare payers, and industry regulators.

ACRM aims to provide multidisciplinary leadership and practice innovation to ensure that people living with chronic disease and disabilities have access to effective rehabilitation management throughout their lives. It serves as a forum for creating and discussing new treatment paradigms that define the composition of the rehabilitation team, the duration of care, and the venues required to achieve optimal functional outcomes for people with chronic disease and disabilities. ACRM is dedicated

optimal functional outcomes for people with chronic disease and disabilities. ACRM is dedicated to

*   Serving as advocates for public policy and legislative issues that support individuals with disabilities and providers of rehabilitation services
*   Helping develop innovative and cost-effective models of collaborative care and comprehensive rehabilitation management
*   Leading research efforts that examine and identify the most effective clinical technology and treatment paradigms

*   Initiating dialogue with payers and regulators to communicate the collaborative care models that produce positive rehabilitation outcomes

### Landmark Contributions  The current title of American Congress of Rehabilitation Medicine became official in 1966. However, this congress was initially founded in 1923 as the American College of Radiology and Physiotherapy. It began as a professional association of physicians who used physical agents to diagnose and treat disability and illness. In 1925, with medicine already moving more toward specialization, the radiology and physical medicine focuses split. It became the American

toward specialization, the radiology and physical medicine focuses split. It became the American Congress of Physical Therapy. At that time, the congress’ primary journal was the Archives of Physical Therapy, X-ray, Radium, which had been founded in 1920. In 1938, the name was changed to Archives of Physical Therapy, which more accurately reflected its focus.

Over the next 6 years, the congress’ focus narrowed further toward physical medicine, and in 1944, the name was again changed to reflect this new direction. It was now the American Congress of Physical Medicine, and in 1945, the name of its journal became the Archives of Physical Medicine. This change in emphasis reflected the distinction that was growing between physical therapy and physical medicine. Physical medicine moved away from a purely clinical approach toward a scientific and diagnostic

Physical medicine moved away from a purely clinical approach toward a scientific and diagnostic basis of the medical use of physical agents. It allowed a distinction between physicians and technicians of physical therapy in accord with the new stance of the American Medical Association (AMA).

By 1952, the field of rehabilitation had significantly expanded following WWII. To reflect the close relationship between physical medicine and rehabilitation, the name was changed to the American Congress of Physical Medicine and Rehabilitation. The following year, the journal name was changed to its current version, Archives of Physical Medicine and Rehabilitation.

In 1965, the congress formed the Professional Development Committee (PDC) which was pivotal in the management and direction of the ACRM for the next 30 years. This committee’s accomplishments included a study of the objectives, constitution, and structure of the congress as well as the sponsorship of interdisciplinary forums and an expansion of the membership. The following year, several physician members recognized the need for a forum in which professionals of other rehabilitation

physician members recognized the need for a forum in which professionals of other rehabilitation disciplines could share their professional, scientific, and technical talents. This led to an amendment to the congress’ constitution allowing membership privileges to be extended to persons “holding an earned doctoral degree and active in and contributing to the advancement of the field of rehabilitation medicine.” This allowed the membership of psychologists, nurses, physical therapists,

medicine.” This allowed the membership of psychologists, nurses, physical therapists, occupational therapists, speech pathologists, social workers, vocational counselors, and others. And in the same year, 1966, the name was officially changed to the American Congress of Rehabilitation Medicine.

### Major Activities  ACRM membership is focused on interdisciplinary communication and collaboration within the rehabilitation professional community. This is accomplished by providing special interest and networking groups within the community, as well as providing publications and conferences that facilitate ongoing research, reference resources, and up-to-date developments in the field of physical rehabilitation medicine. Some of the resources available include the following:

*   Fellows of ACRM *   Archives of Physical Medicine and Rehabilitation – a leading journal in rehabilitation
*   Cognitive Rehabilitation Manual: Translating Evidence-Based Recommendations into Practice
*   ACRM eNews *   Progress in Rehabilitation Research – an annual conference that brings together experts and participants from 20+ countries
*   Midyear meeting for members and leaders within the community to collaborate and share information and refine guideline development

*   Community calendar compiles a list of upcoming networking events and educational course offerings

### See Also *   Certified Rehabilitation Counselor *   Occupational Therapy (OT) *   Physical Therapy   Membership is limited to physicians (with an M.D. or D.O. degree or international equivalent) who are in practice of residents in the United States and its possessions. Medical students can also enroll prior to completion of their training. About one quarter of US physicians are members of the organization. The mission of the AMA is multifaceted and included improved public health, advocacy

organization. The mission of the AMA is multifaceted and included improved public health, advocacy for physicians and their patients, and medical education. The AMA plays a major role in maintenance of medical coding that health-care providers use for reimbursement.

### Landmark Contributions  The organization was founded in 1847 and incorporated 50 years later. It has a strong record of promotion of the scientific method in the practice of medicine and in the improvement of medical education. It also has had a major role in elaboration of principles of medical ethics and public health measures. It makes substantial contributions in support of medical students in financial need as well as grants for research and community projects. Over the years, many of

in financial need as well as grants for research and community projects. Over the years, many of its political positions have been controversial, for example, including its initial opposition to Medicare. In recent years, it has focused on the disparities of health care and the special needs of some groups to medical services. Criticism of the organization has come from several sources including the noted economist Milton Friedman who argues that it has acted to limited competition.

### Major Activities  The AMA publishes a series of journals in medicine. Of these, the Journal of the American Medical Association (JAMA) is the most prominent for the field of medicine in general, and the specialty journals of Archives of General Psychiatry and the Archives of Pediatric and Adolescent Medicine are most relevant to individuals with autism and other developmental disabilities.

### See Also *   American Psychiatric Association  ### References *   Cassedy, J. H. (1991). Medicine in America: A short history. Baltimore: Johns Hopkins University Press.
*   Duffy, J. (1993). From humors to medical science: A history of American medicine. Urbana: University of Illinois Press.

### Major Areas or Mission Statement  The mission of the American Psychiatric Association is to promote the highest quality care for individuals with mental disorders (including mental retardation and substance-related disorders) and their families, promote psychiatric education and research, advance and represent the profession of psychiatry, and serve the professional needs of its membership.

### Landmark Contributions  The American Psychiatric Association, founded in 1844, is the oldest national medical professional association in the United States and the world’s largest psychiatric organization. Its member physicians work together to ensure humane care and effective treatment for all persons with mental disorders, including intellectual disability and substance-related disorders.

In 1948, APA formed a small task force to create a new standardized psychiatric classification system. This resulted in the 1952 publication of the first Diagnostic and Statistical Manual of Mental DisordersTM (DSM). The task force is currently developing DSM-5 to be published in May of 2013.

### Major Activities  The APA publishes scientific journals: The American Journal of Psychiatry publishes the latest advances in the diagnosis and treatment of mental illness. The findings presented in this journal explore the full spectrum of issues related to mental health diagnoses and treatment.

Psychiatric Services, a journal of the American Psychiatric Association, is a journal for mental health professionals and others concerned with treatment and services for persons with mental illnesses and mental disabilities.

FOCUS: The Journal of Lifelong Learning in Psychiatry addresses clinical issues in psychiatry, featuring articles on current research including influential works selected by experts in the field. It also features an annual self-assessment exam and assists psychiatrists with recertification.
The APA’s annual meeting brings together psychiatrists from all over the world to understand new research findings and acquire new knowledge and clinical issues in patient care.

### See Also *   American Medical Association *   DSM-IV *   Psychiatrist   The primary mission of the APA is to “advance the creation, communication and application of psychological knowledge to benefit society and improve people’s lives” (APA.org). The APA states that within this mission contains the aspiration and vision to excel as a valuable, effective, and influential organization advancing psychology as a science (American Psychological Association 2002). This is accomplished by the

psychology as a science (American Psychological Association 2002). This is accomplished by the organization’s efforts to be:

*   A uniting force for the discipline *   The major catalyst for the stimulation, growth, and dissemination of psychological science and practice
*   The primary resource for all psychologists *   The premier innovator in the education, development, and training of psychological scientists, practitioners, and educators
*   The leading advocate for psychological knowledge and practice informing policy makers and the public to improve public policy and daily living

*   A principal leader and global partner promoting psychological knowledge and methods to facilitate the resolution of personal, societal, and global challenges in diverse, multicultural, and international contexts
*   An effective champion of the application of psychology to promote human rights, health, well-being, and dignity
 The APA also notes its commitment to this vision through adherence and dedication to the following values:

*   Continual pursuit of excellence *   Knowledge and application based on methods of science *   Outstanding service to its members and to society *   Social justice, diversity, and inclusion *   Ethical action in all that we do  The APA espouses the goal of seeking to advance psychology as a science, a profession, and as a means of promoting health, education, and human welfare by promoting and maintaining the following actions:

*   Encouraging the development and application of psychology in the broadest manner
*   Promoting research in psychology, the improvement of research methods and conditions, and the application of research findings
*   Improving the qualifications and usefulness of psychologists by establishing high standards of ethics, conduct, education, and achievement

*   Increasing and disseminating psychological knowledge through meetings, professional contacts, reports, papers, discussions, and publications

### Landmark Contributions  The APA was founded in 1892 by G. Stanley Hall at Clark University in Worcester, Massachusetts, with approximately 26 individuals accepting membership at the time of its formation. Since the time of its inception, the APA has held prominent and historical members in the field of psychology as its president including William James (1894), James McKeen Cattell (1895), Edward Thorndike (1912), Carl Rogers (1947), Harry Harlow (1958), Abraham Maslow (1968), Albert

Edward Thorndike (1912), Carl Rogers (1947), Harry Harlow (1958), Abraham Maslow (1968), Albert Bandura (1974), and Phillip Zimbardo (2002).

The APA was responsible for the formation, review, and revision of the ethical codes of conduct and standards of practice. The code itself “is intended to provide guidance for psychologists and standards of professional conduct that can be applied by the APA and by other bodies that choose to adopt them” (APA 2002). The Ethics Code contains the following five general principles that are aspirational in nature and intended to be viewed as a guide to the highest possible standards of ethical

in nature and intended to be viewed as a guide to the highest possible standards of ethical practice:

*   Beneficence and nonmaleficence *   Fidelity and responsibility *   Integrity *   Justice *   Respect for people’s rights and dignity  The APA also formulated ten ethical standards of practices with specific guidelines in areas of psychology’s application to a variety of domains. The standards set forth by the APA are enforceable by law and provide a guiding framework for the competent and ethical practice of psychology. The ethical standard domains encompass:

*   Resolving ethical issues *   Competence *   Human relations *   Privacy and confidentiality *   Advertising and other public statements *   Record keeping and fees *   Education and training *   Research and publication *   Assessment *   Therapy  Since 1955, the APA has provided the Model Act for State Licensure of Psychologists as a prototype to aid in the drafting of each state’s specific legislation regarding the practice and licensing of psychologists in their respective states. The

legislation regarding the practice and licensing of psychologists in their respective states. The document is also meant to educate and inform legislators about the training and practice of psychology. It has undergone periodic revisions and updates since its inception (APA Committee on Legislation 1955). In 1984, the Council of Representatives directed the Board of Professional Affairs (BPA) to develop another revision of the existing 1967 Model Act for the council’s consideration. The

to develop another revision of the existing 1967 Model Act for the council’s consideration. The Committee on Professional Practice (COPP) prepared the revised document, and it was approved by the Council of Representatives in February 1987 (American Psychological Association 1987). In 2006, the 1987 Model Act was again revised by a task force funded by the APA Board of Directors and Council of Representatives at the recommendation of the Board of Professional Affairs and the Committee for the

at the recommendation of the Board of Professional Affairs and the Committee for the Advancement of Professional Practice. The primary reason for the changes in the existing Model Act was that it did not reflect the developments in professional practice that had occurred over the preceding 20 years across respective states. Specific developments included the option for prescriptive authority in some states, changes to the provision of industrial/organizational and consulting psychology services

states, changes to the provision of industrial/organizational and consulting psychology services encouraging licensure for psychologist practicing in those arenas, and changes in the recommended sequence of education and training for psychologists. The task force provided a comprehensive review of the 1987 document as well as relevant APA policies and other documents before creating a finalized draft of the new act. The newest revision was approved by council in February 2010 and includes

draft of the new act. The newest revision was approved by council in February 2010 and includes commentary and guidelines for the following areas related to the practice of professional psychology (American Psychological Association 2010):

*   Declaration of policy *   Definitions *   State psychology boards *   Requirements for licensure *   Interstate practice of psychology *   Temporary authorization to practice *   Limitations of practice, maintaining and expanding competence *   Inactive status *   Practice without a license *   Exemptions *   Grounds for suspensions or revocation of licenses *   Board hearing and investigations *   Privileged communication *   Severability *   Effective date  The Publication Manual of the

*   Privileged communication *   Severability *   Effective date  The Publication Manual of the American Psychological Association, currently in its sixth edition, has provided guidelines and recommendations for publication style intended for writers, editors, students, and educators in the social and behavioral sciences. It has grown considerably since its first publication in February of 1929 as a seven-page instructional report (American Psychological Association 2001). Over the subsequent 70

a seven-page instructional report (American Psychological Association 2001). Over the subsequent 70 years, these suggestions and instructions were revised and expanded across six editions to its present form. The current manual provides guidance on all aspects of the scientific writing process, from the ethics of authorship to the word choice that best reduces bias in language. The manual additionally provides guidance on choosing the headings, tables, figures, and tone that will result in

provides guidance on choosing the headings, tables, figures, and tone that will result in strong, simple, and elegant scientific communication. Every edition of the Publication Manual has been intended to aid authors in the preparation of manuscripts with the primary goal of providing a standardized communication that will efficiently convey new ideas and research and to simplify the tasks of publishers, editors, authors, and readers. This has further allowed for the linkages of electronic files

editors, authors, and readers. This has further allowed for the linkages of electronic files across publishers and manuscripts as new technological advancements in communication and distribution have emerged. This includes the maintenance and management of the abstract database, PyscINFO, which collects and distributes electronic information from approximately 2,500 journals dating from 1,800 to present (APA.org). Over a thousand journals in psychology, the behavioral sciences, nursing, and

to present (APA.org). Over a thousand journals in psychology, the behavioral sciences, nursing, and personal administration use the Publication Manual as their specified style guide (APA 2001).

### Major Activities  The APA exists and operates as an executive office, a publishing operation, and an office that addresses administrative, business, information technology, and operational needs. It also contains five substantive directorates that address the needs of the field of psychology in its respective areas:
 *   The Education Directorate accredits doctoral psychology programs and addresses issues related to psychology education in secondary through graduate education.

*   The Practice Directorate engages on behalf of practicing psychologists and health-care consumers.
*   The Public Interest Directorate advances psychology as a means of addressing the fundamental problems of human welfare and promoting the equitable and just treatment of all segments of society.
*   The Public and Member Communications Directorate is responsible for APA’s outreach to its members and affiliates and to the general public.

*   The Science Directorate provides support and voice for psychological scientists.

The American Psychologist is the APA’s official journal and most highly circulated peer-reviewed publication. The APA also publishes 57 other journals across a wide range of specialty and focus areas (APA.org). The APA also hosts the largest national convention and gathering of psychologists in the United States in a different host city each year. The convention provides seminars, conferences, presentations, and networking for all areas of psychology in its respective areas of research and

presentations, and networking for all areas of psychology in its respective areas of research and practice.

Each year, the APA recognizes the work of psychologists with its “Distinguished Contributions Award.” The awards are considered among the highest honors given and include recognition in the following categories:

*   Distinguished Scientific Contributions to Psychology *   Distinguished Contributions to Psychology in the Public Interest *   Distinguished Scientific Applications of Psychology *   Distinguished Contributions to Education and Training in Psychology *   Distinguished Professional Contributions to Applied Research *   Distinguished Professional Contributions to Practice in the Public Sector *   Distinguished Contributions to the International Advancement of Psychology  The APA participates in

Distinguished Contributions to the International Advancement of Psychology  The APA participates in a commitment to be an international partner with the global psychological community. Its office of International Affairs promotes exchange and collaboration with international communities including the United Nations. There are over 7,000 international members and affiliates of the APA (APA.org).

The APA has periodically provided commentary, guidelines, and recommendations to specific issues of practice and applications of psychology that impact current world events and ethical issues. Such issues and world topics have included task force reports on appropriate therapeutic responses to sexual orientation (APA Task Force on Appropriate Therapeutic Responses to Sexual Orientation 2009) as well as the use of military interrogation tactics (American Psychological Association 2007).

Division 33 (Mental Retardation and Developmental Disabilities) of the American Psychological Association was formed in 1973 as a unified division for psychologists committed to advancing psychology practice and research for individuals with mental retardation and developmental disabilities. In order to more accurately recognize the breadth of conditions that are now recognized to constitute developmental disabilities (e.g., autism, Asperger’s disorder), the division changed its name from

developmental disabilities (e.g., autism, Asperger’s disorder), the division changed its name from Mental Retardation to Mental Retardation and Developmental Disabilities in 1988 and to Intellectual and Developmental Disabilities in 2007 (APA.org). The division consists of five special interest groups: behavior modification and technology, dual diagnosis, early intervention, aging and adult development, and transitioning into adulthood. Members of Division 33 receive the newsletter “Psychology in

and transitioning into adulthood. Members of Division 33 receive the newsletter “Psychology in Mental Retardation and Developmental Disabilities” three times per year and have access to the division’s Listserv.

### See Also *   American Psychiatric Association *   Clinical Psychology *   Psychologist   American Sign Language (ASL) is the natural and national sign language of the deaf community in the United States and parts of Canada (Neidel et al. 2000). It is a natural language because it has developed out of a need for deaf individuals to communicate with each other, and it is a language that is in constant evolution. It is a national language because it is mutually intelligible and separate from

constant evolution. It is a national language because it is mutually intelligible and separate from the sign languages that are used in other countries such as British Sign Language (Great Britain), Mexican Sign Language (Mexico), and so forth. ASL is a separate language from spoken English (Lane et al. 1996), and it is distinct from manual codes of English such as Seeing Essential English (SEE I), Signing Exact English (SEE II), Linguistics of Verbal English (LOVE), or Conceptually Accurate

I), Signing Exact English (SEE II), Linguistics of Verbal English (LOVE), or Conceptually Accurate Signed English (CASE). Unlike most other languages, ASL is typically learned from peers rather than from one’s parents (Padden 1980). This may be due to the fact that most deaf children (about 90 %) are born to hearing parents (Mitchell and Karchmer 2004) rather than to deaf parents who could pass along the language to their children.

### Historical Background  The American Sign Language that is used today is a combination of Parisian sign language that was introduced in 1817 by Laurent Clerc, a teacher of the deaf from France, and the sign language that was used by the large community of deaf Americans at Martha’s Vineyard (Baynton 1996). Despite attempts by some members of the normally hearing community to extinguish the language, the ASL that was used in the mid-1800s is still intelligible today to ASL users (Baynton

language, the ASL that was used in the mid-1800s is still intelligible today to ASL users (Baynton 1996). William C. Stokoe Jr. first described ASL in his publication Sign Language Structure (Stokoe 1960). In it, he argued that indeed American Sign Language was a true and natural language and not merely gestures or pantomime. Stokoe followed this work with the first dictionary of American Sign Language.

### Current Knowledge  Since the work of William Stokoe, much study has been focused on ASL specifically and sign languages in general. The field of linguistics has a greater understanding of language thanks to comparisons made between spoken languages and sign languages. Like spoken languages, sign language is comprised of syntax, semantics, morphology, and phonology (Sandler and Lillo-Martin 2006). We have much greater understanding of communication processes and language universals due to

2006). We have much greater understanding of communication processes and language universals due to research on deaf adults who are victims of stroke or traumatic brain injury with resulting aphasia in sign language. The left hemisphere of the brain is largely responsible for language processing of sign language just as it is for spoken language (Corina 1998; Poizner et al. 1987). Both fluent and nonfluent aphasias in sign have been documented as well as paraphasias resulting from disordered

and nonfluent aphasias in sign have been documented as well as paraphasias resulting from disordered phonology and morphology. See Hickok et al. (1998) and Woll and Sharma (2008) for a review of the literature.

Because users of spoken language use gestures to augment their messages, there is recent research on the role of gesture for those who use sign. Vermeerbergen and Demey (2007) show that gesture and sign can coexist and are often combined into one sign. Also, interestingly, the mouth and hands may trade tasks in fluent signers. For nonsigners, the mouth is responsible for transmitting verbal information, while the hands are largely responsible for gesturing to augment the message. For signers,

while the hands are largely responsible for gesturing to augment the message. For signers, the mouth may be responsible for gesturing, while the hands convey linguistic information.

Much recent work has been focused on using technology to enhance the lives of the deaf population. There is great potential for converting sign to text and text to sign to create faster and more efficient exchanges between the deaf and hearing populations. The complexities of sign language, however, have made it difficult to automate a translation system to convert signed conversations to text. Two of the most commonly used input devices for capturing sign language gestures are glove-type

Two of the most commonly used input devices for capturing sign language gestures are glove-type devices and computer vision systems. Each system has advantages and drawbacks.

There have been a number of different glove-based devices used for input purposes (Hernandez-Rebollar et al. 2004). These devices typically contain several sensors per finger to measure the way the fingers move and the angle of the fingers as well as sensors to measure the pitch and roll of the hand. Proponents of these systems show that these input devices are able to more precisely detect handshapes than video-based systems (Fels and Hinton 1993; Hernandez-Rebollar et al. 2004). There are

than video-based systems (Fels and Hinton 1993; Hernandez-Rebollar et al. 2004). There are several disadvantages posed by data-glove devices (Wang et al. 2007). While extremely accurate, these devices were typically bulky and cumbersome as an individual wearing this device needed to be physically attached to the device that connects to a computer by means of cables. This need to tether the device to a computer limited how and where these devices could be used. The need to be physically

device to a computer limited how and where these devices could be used. The need to be physically connected is changing with advances in technology. Newer devices are employing technology such as electro-optical or magnetic sensors and accelerometers along with wireless capabilities to compensate for many of the early data-glove limitations (Dipietro et al. 2008). Even with advances in technology, these devices might interfere with natural movement and thus self-expression for individuals using

these devices might interfere with natural movement and thus self-expression for individuals using them. Another factor that limits the use of these devices is the expense, which is typically more than for vision-based systems, although some of the costs have been reduced with new technology.

Gesture recognition based on computer vision systems utilizes a camera to detect hand movements and handshapes. Generally, these systems detect movement or the skin color of the hand to segment and extract features that can be used to model the hand. While the actual processes that each system employs vary, three basic types of methods are used to extract hand features:
1.  Model-based or kinematic methods seek to model the angles created by the palm and joints of the hand.

2.  View-based or appearance-based methods use multiple two-dimensional intensity images to model gestures as a sequence of views to overcome some of the shortcomings of kinematic models.
3.  Low-level feature-based methods utilize low-level measurements of the hand region. These methods do not rely on re-creating an exact model of the hand but rather attempt to capture just enough of the essential information needed to recognize gestures.

Opponents of video-based gesture recognition state that video-based systems are less able to recognize handshapes (Hernandez-Rebollar et al. 2004; Starner et al. 1997; Starner and Pentland 1998). Other challenges that video-based systems must overcome are specific lighting conditions needed to accurately capture the intended target as well as camera placement. Additionally, the subject being captured must remain in frame and the camera must not be obscured while recognition is underway. These

must remain in frame and the camera must not be obscured while recognition is underway. These limitations, particularly in earlier systems, made video-based systems difficult to use outside of the laboratory setting. Additionally processing the collected information to extract necessary features requires large amounts of computation that makes real-time processing difficult.

Current techniques in video-based gesture recognition address some of the earlier challenges including using multiple cameras, faster cameras, and better controlled environments and even having the users wear specially colored gloves (Murthy and Jadon 2009; Wang et al. 2007). In addition, the processing of the data collected has improved by implementing processes such as hidden Markov models and the use of neural networks, but these tasks are still computationally expensive (Murthy and Jadon

the use of neural networks, but these tasks are still computationally expensive (Murthy and Jadon 2009).

### Future Directions  The relationship between language and cognition is an area of continued interest and research. Much more can be learned regarding the processing of visual-spatial information from studies comparing native deaf signers, hearing signers, and hearing nonsigners. The area of normal sign language acquisition is in need of further exploration. With a better understanding of how sign language develops normally, we would be better able to identify disordered or delayed

of how sign language develops normally, we would be better able to identify disordered or delayed acquisition. The issue of bilingualism in sign language acquisition needs to be appraised more fully. Children who use ASL must become bilingual in their language of conversation (ASL) and their language of instruction which is most often English in many forms (written, signed, and spoken). Therefore, more studies should focus on bilingual acquisition. Few studies use a longitudinal design which

more studies should focus on bilingual acquisition. Few studies use a longitudinal design which would elucidate patterns in the development of sign language and help in the recognition of individual differences. Finally, as technology becomes smaller, less expensive, and more readily available, the applications for those with disabilities are limitless.

The American Speech-Language-Hearing Association Functional Assessment of Communication Skills (ASHA FACS) measures and provides tools to monitor the functional communication of adults with certain speech, language, and cognitive impairments. Functional communication is the ability to effectively and independently communicate by sending or receiving messages, whether the individual uses speech, sign, pictures, or a speech-generating machine to convey the message.

### Historical Background  This test was first published in 1995 to measure the ability of adults with left-hemisphere stroke and traumatic brain injury to execute their daily communication tasks. An addendum to this test was published in 2004 that included normative data from individuals with right-hemisphere stroke, progressive neurological disease, and Alzheimer’s disease and related dementias but not adults with communication deficits related to autism spectrum disorder (ASD). The extended

but not adults with communication deficits related to autism spectrum disorder (ASD). The extended validation of the test was also designed to support the use of this measure with multicultural populations in the United States and English-speaking populations internationally. The 2017 revised edition of the test includes the same test items and scoring procedures and an updated literature overview and presentation of validation studies in the manual.

### Psychometric Data  Comparison data for the American Speech-Language-Hearing Association Functional Assessment of Communication Skills (ASHA FACS) test is based on the performance of individuals with aphasia, following left-hemisphere stroke, traumatic brain injury, dementia, and right-hemisphere stroke. While it may not be appropriate to use this data to evaluate the performance of adults with ASD, the test might be used informally to identify specific behaviors important to developing

with ASD, the test might be used informally to identify specific behaviors important to developing effective functional communication in adults with ASD. An individual’s ability to perform the activities outlined on the ASHA FACS should allow the clinician to examine patterns of social communication and the comprehension and use of oral and written language.

### Clinical Uses  The American Speech-Language-Hearing Association Functional Assessment of Communication Skills (ASHA FACS) is suggested for use with adults with speech, language, and cognitive difficulties following a stroke or traumatic brain injury or in the presence of progressive neurological disease, Alzheimer’s disease, and related dementias. The assessment looks at the following areas: social communication, communication of needs, daily planning, and reading, writing, and number

social communication, communication of needs, daily planning, and reading, writing, and number concepts. Although not

Mesibov, Gary  Name and Degrees *   Gary B. Mesibov *   Stanford University, AB Psychology, 1967 *   University of Michigan, MA Developmental Psychology, 1968 *   Brandeis University, PhD Psychology, 1974  Major Appointments (Institution, Location, Dates) *   2000 – Present Fellow, Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill
*   1987 – Present Professor of Psychology Emeritus, Department of Psychiatry, University of North Carolina at Chapel Hill

*   1987 – Present Clinical Professor Emeritus, Department of Psychology, University of North Carolina at Chapel Hill
*   1992–2010 Director, Division TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), University of North Carolina at Chapel Hill
*   1988–1992 Codirector, Division TEACCH *   1981–1987 Associate Professor of Psychology, Department of Psychiatry, University of North Carolina at Chapel Hill

*   1983–1987 Associate Director, Division TEACCH *   1979–1982 Coordinator of Adolescent and Adult Services, Division TEACCH *   1975–1981 Assistant Professor of Psychology, Department of Psychiatry, University of North Carolina at Chapel Hill
*   1975–1979 Psychologist, Division for Disorders of Development and Learning, University of North Carolina at Chapel Hill

*   1974–1975 Postdoctoral Fellow, Clinical Child Psychology, Division for Disorders of Development and Learning, University of North Carolina at Chapel Hill
 Major Honors and Awards *   1982 President, Society of Pediatric Psychology (Section 5 of the American Psychological Association Division of Clinical Psychology)
*   1982 Certificate of Appreciation for Contributions to Developmentally Handicapped Citizens of North Carolina (Awarded by Orange County, NC Association for Retarded Citizens)

*   1984 Fellow Status, American Psychological Association Divisions 37, 12 *   1989 Distinguished Professional Contribution Award, Society of Pediatric Psychology, American Psychological Association
*   1990 First recipient of Mesibov Award, given annually by Residential Services, Inc. for excellence in community-based residential service system for developmentally handicapped children and adults in Orange County, NC

*   1994 Opleidingscentrum (Belgium) International Award for contributions translating theory into effective practice in autism
*   1994 Mary G. Clarke Award from the North Carolina Psychological Association given annually to a psychologist in North Carolina for outstanding contributions spanning several years. Contributions must reflect qualities of dedication, competence, high ethical standards, advocacy for the field of psychology, and sensitivity

*   1995 MAPP (International organization to help More Able Autistic People) Award for invaluable service to the organization and to high-functioning people with autism
*   l997 Distinguished Professional Contributions Award for Public Service, American Psychological Association
*   2000 “Doctor Honoris Causa” (Honorary Degree) from the University of Mons-Hainaut (Belgium) for contributions to improving the quality of life for people with autism throughout the world

*   2000 Emily and Frank Puzio Award from the Eden Institute’s Princeton Lecture Series for leadership in improving the quality of life of individuals with autism
*   2006 UNC Chancellor’s Award for Excellence for meritorious accomplishments clearly above and beyond what is expected in human relations
*   2006 NC State Employees Award for Excellence representing outstanding performance. This is the highest award an NC state employee can receive

*   2010 Danish National Autism Society Professional of the Year for doing the most to advance treatment and education of people with autism spectrum disorders
*   2010 American Association on Intellectual Developmental Disabilities Award for service to people with disabilities.
*   2010 Autism Society of America Founders Award for career substantive contributions to the field of autism spectrum disorders

*   2011 Honorary Degree from the University of Northampton (UK) for contributions to the education of children and adults on the autism spectrum

Landmark Clinical, Scientific, and Professional Contributions Gary B. Mesibov has dedicated his career as a psychologist to autism. His contributions include a major assessment instrument; a book series; a comprehensive program of educational, vocational, residential, and family support services; and a unique training program for other professionals. His reputation among students, families, and professional colleagues is one of wisdom, generosity, compassion, and amazing productivity. He

and professional colleagues is one of wisdom, generosity, compassion, and amazing productivity. He brings intellectual rigor to his professional activities and combines it with gentleness and respect for all clients and their families. His influence began in North Carolina and has spread throughout the world.

Short Biography Gary B. Mesibov defended his doctoral dissertation in psychology at Brandeis University in the spring of 1974. Shortly thereafter, he arrived at the University of North Carolina at Chapel Hill as a postdoctoral fellow in the Division for Disorders of Development and Learning (DDDL). Gary’s time at the DDDL marked the beginning of his professional identification with the field of developmental disabilities. Recognized as a gifted and prolific psychologist, after only 18 months,

developmental disabilities. Recognized as a gifted and prolific psychologist, after only 18 months, Gary was asked to accept a staff position at the DDDL with an appointment as an Assistant Professor of Psychology in the Department of Psychiatry. Gary’s quiet passion for understanding and serving people with developmental disabilities soon led to professional involvement with newly developing service models in North Carolina, including group homes, sheltered workshops, limited guardianship, and

models in North Carolina, including group homes, sheltered workshops, limited guardianship, and social skills training, as well as service on a human rights committee at the regional residential facility for people with severe/profound intellectual disabilities. Gary conducted research, introduced students to the rewards and fascinations of developmental disabilities, and worked closely with clients and families. At the same time, he was teaching in the Department of Psychology, supervising

and families. At the same time, he was teaching in the Department of Psychology, supervising interns and postdoctoral fellows in the Department of Psychiatry, and devoting considerable time and effort to the development of the Society of Pediatric Psychology (Section 5 of the American Psychological Association’s Division 12).

Chapel Hill had long been a center of excellence in the field of developmental disabilities. In addition to the DDDL’s broad-based training program in developmental disabilities, a small, psychoanalytically oriented program on autism had functioned for some years within the Department of Psychiatry. In 1966, this program was expanded and refocused by Eric Schopler and Robert Reichler on the assumptions that autism was a neurobiological disorder and that parents and professionals could work as

that autism was a neurobiological disorder and that parents and professionals could work as cotherapists to help children with autism develop. In 1972, that program was renamed TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children) and funded by the North Carolina General Assembly as the nation’s first statewide autism program.

Eric recruited Gary in 1979 to assume the new position of Coordinator of Adolescent and Adult Services at TEACCH. Four years later, Gary became Associate Director; 5 years later, codirector; and in 1992, with Eric Schopler’s semiretirement, Director of Division TEACCH. Gary served in this position for 18 years until his retirement in 2010. This was a formative period for the organization as it grew to nine regional centers across the state of North Carolina, serving thousands of individuals on

to nine regional centers across the state of North Carolina, serving thousands of individuals on the autism spectrum. It was also a period of both broadening and deepening TEACCH’s philosophical underpinnings and, as a result, its approach to intervention for individuals with autism. Eric had first understood the importance of using structure to help children with autism focus and learn; Gary elaborated on the principles of structured teaching and applied them to classroom, vocational, and

elaborated on the principles of structured teaching and applied them to classroom, vocational, and residential settings. He also emphasized the importance of improving the quality of life for individuals on the autism spectrum, not merely addressing “deficits” or “behavior problems.” In 2004, Gary coauthored The TEACCH Approach to Autism Spectrum Disorders as an introduction to the TEACCH philosophy, structured teaching, and its application across a wide range of contexts. From 1983 until 1998,

structured teaching, and its application across a wide range of contexts. From 1983 until 1998, Gary and Eric coedited the “Current Issues in Autism” series for Plenum Press. These books were based on the yearly TEACCH conference held in Chapel Hill each May. The conference has drawn noted autism experts such as Margaret Bauman, Eric Courchesne, Geraldine Dawson, Christopher Gillberg, Temple Grandin, Cathy Lord, Sally Ozonoff, Michael Rutter, Oliver Saks, Wendy Stone, and Lorna Wing. Conference

Cathy Lord, Sally Ozonoff, Michael Rutter, Oliver Saks, Wendy Stone, and Lorna Wing. Conference speakers uniformly, and quite independently, speak with affection and admiration for Gary’s contributions. Throughout the years, he has demonstrated a remarkable capacity to maintain warm, personal relationships with professionals around the world.

Like most respected academics, Gary began to be asked to give talks or provide training outside his hometown. In the late 1970s, his talks were in rural North Carolina, with occasional well-timed presentations at the Atlantic coast in the summer. By the 1980s, he was accepting invitations to Kentucky, Ohio, Georgia, Florida, and Oregon. During this time, he was also developing a unique, week-long, multimodal training program for teachers and other professionals working with students with

multimodal training program for teachers and other professionals working with students with autism. Gary and a training team would arrive at a location on Sunday, set up a model classroom with local students with autism on Monday morning, and take turns giving didactic lectures and operating the classroom. The trainees would observe trainers working with the students and then take over themselves, designing and presenting teaching activities that put into practice the principles they had been

designing and presenting teaching activities that put into practice the principles they had been hearing in the lectures. After the local students went home for the day, there would be small-group and large-group debriefings of what trainees had tried, what had worked, and what had not worked. This model classroom has been presented every summer since 1985, training more than 2000 teachers of students with autism. Gary and his teams have also presented the classroom and other types of training

with autism. Gary and his teams have also presented the classroom and other types of training in Australia, Belgium, China, Denmark, England, France, Germany, Hong Kong, India, Italy, Japan, Kuwait, Mexico, New Zealand, Northern Ireland, Norway, Pakistan, Qatar, Russia, Saudi Arabia, Singapore, Sweden, and Venezuela.

Gary was also involved in developing the Adolescent and Adult Psychoeducational Profile (AAPEP), an assessment instrument for adolescents and adults with autism. In 2007, he and his colleagues issued a major revision of the instrument, renamed the TEACCH Transition Assessment Profile (TTAP), in order to assess more accurately the skills needed for successful employment in community settings and to promote independent functioning in the home, workplace, and community. Gary’s vision and leadership

promote independent functioning in the home, workplace, and community. Gary’s vision and leadership have been the impetus behind TEACCH’s Supported Employment Program, which continues to be one of the most successful such programs in the nation for adults with autism.

Gary served for 10 years as editor of the Journal of Autism and Developmental Disorders and on the editorial boards of the Journal of Pediatric Psychology, Journal of Clinical Child Psychology, and Journal of Cognitive Rehabilitation, in addition to being a guest reviewer for almost a dozen other journals. Over his career, Gary has earned a reputation as someone who can translate basic research into everyday practice. In recent years, he has helped the autism community think carefully about

into everyday practice. In recent years, he has helped the autism community think carefully about “evidence-based practice” and how this concept can be applied to specific autism interventions and to broad-based program models.

Gary’s many professional awards demonstrate his commitment to advancing the science and practice of psychology while maintaining a clear focus on improving quality of life for individuals with autism across the lifespan. For example, he received the 1997 American Psychological Association’s Distinguished Professional Contributions Award for Public Service. He has received honorary doctoral degrees from the University of Mons-Hainaut (Belgium, 2000) for “contributions to improving the quality

from the University of Mons-Hainaut (Belgium, 2000) for “contributions to improving the quality of life for people with autism throughout the world” and from the University of Northampton (United Kingdom, 2011) “for his contribution to the education of children and adults on the autism spectrum.” In 2006, Gary received the University of North Carolina at Chapel Hill Chancellor’s Award for “meritorious accomplishments” on behalf of the university. In 2010, he was named “Professional of the Year”

accomplishments” on behalf of the university. In 2010, he was named “Professional of the Year” by the Danish Autism Society for “doing the most to advance treatment and education of people with autism spectrum disorders.” Also in 2010, Gary received the Autism Society of America Founders Award for “career substantive contributions to the field of autism spectrum disorders.” These are just the highlights from a career marked by recognition from parents and professionals alike.

Since stepping down as director of Division TEACCH, Gary has found a bit more time for his grandchildren, but he has not lost his passion for improving the quality of life for individuals with autism, particularly for adolescents and adults. He continues to inspire the TEACCH staff and the autism community at large to embrace “the culture of autism” as a metaphor for understanding the unique qualities of the children, adolescents, and adults they serve.

Mesoridazine  Synonyms Mesoridazine besylate; Serentil  Definition Mesoridazine is a prescription drug in the group of piperidine phenothiazines in the family of first-generation antipsychotics whose active ingredient mesoridazine besylate has the chemical formula C27H32N2O4S3. This drug was initially FDA-approved for medical use in the year 1970 and was produced by the company Novartis, but the production of this drug has been discontinued. This compound has relatively low potency compared to

production of this drug has been discontinued. This compound has relatively low potency compared to the other first-generation antipsychotics, and its mechanism of action is thought to involve anticholinergic binding. This drug is FDA-approved for the treatment of schizophrenia and can be used to treat aggressive symptoms. Observed side effects include drowsiness/sedation, Parkinsonism, akathisia, orthostatic hypotension, tachycardia, electrocardiogram (ECG) abnormalities, anticholinergic

orthostatic hypotension, tachycardia, electrocardiogram (ECG) abnormalities, anticholinergic effects, sexual dysfunction, galactorrhea, and weight gain.

Metabolic Testing  Description Definition Metabolic testing is the laboratory evaluation looking for inborn errors of metabolism. Inborn errors of metabolism are genetic or inherited conditions that cause symptoms because of a lack of a necessary enzyme or biochemical process that results in the inability to convert substrates into the appropriate biologic product in the body. Some inborn errors of metabolism result in toxic accumulations of substances that cannot be metabolized, and others

of metabolism result in toxic accumulations of substances that cannot be metabolized, and others have symptoms that result from a deficit in production of necessary biochemical compounds. Specific biochemical tests are used to examine the metabolism of compounds such as amino acids, carbohydrates, fatty aldehydes, organic acids, peroxisomes, lysosomes, and others.

Background Inborn errors of metabolism are seen in the general population at a rate of 0.1–0.4%. It has been suggested that they may be identified in 3–5% of children on the autism spectrum. However, there are many types of inborn metabolic disorders, and each type is extremely rare. Categories of inborn errors of metabolism include metabolism of carbohydrates or sugars, problems with processing protein or amino acids, mitochondrial disorders, storage disorders, disorders of steroid metabolism,

or amino acids, mitochondrial disorders, storage disorders, disorders of steroid metabolism, and many others.

Metabolic testing may be ordered to look for rare causes of developmental disability in the presence of a history of regression, a family history of early childhood deaths or regression, specific symptoms consistent with a metabolic disorder, or findings on physical or neurologic exam suggesting a metabolic disorder might be present. Metabolic testing is performed through newborn screening in every state in the United States. Different panels are included in newborn testing in each state. Some

state in the United States. Different panels are included in newborn testing in each state. Some allow families to refuse. Newborn screening takes a few drops of blood dried on a filter paper that are then evaluated using very specific methodology. Most states include PKU, galactosemia, biotinidase deficiency, congenital adrenal hyperplasia, maple syrup urine disease, tyrosinemia, and other nonmetabolic disorders like hypothyroidism, sickle cell syndrome, and cystic fibrosis.

The symptoms of inborn errors of metabolism might occur at birth, sometime in the first 3 years of life or later depending on the disorder and whether their might be some residual metabolic function. Some disorders like phenylketonuria occur when the placenta no longer compensates for the metabolic error. In other situations, decompensation occurs during a serious illness or major stressor. Others are progressive such as infantile ceroid lipofuscinosis, biotinidase deficiency, and Sanfilippo

are progressive such as infantile ceroid lipofuscinosis, biotinidase deficiency, and Sanfilippo syndrome. Abnormalities on newborn screening typically require additional testing to confirm that a problem exists. Specific tests are used for each of the identified metabolic disorders. A specialist such as a geneticist or child neurologist often must consult to help guide the evaluation.

The first inborn error of metabolism to benefit from widespread newborn screening was phenylketonuria or PKU. It is due to an absence of the enzyme that metabolizes the amino acid phenylalanine into tyrosine. Without this enzyme, a toxic metabolite builds up and results in neurologic impairment. This is the most common of the inborn errors of metabolism and is seen in 1 in 10,000 live births. The treatment for this is diet by limiting intake of Phe. Untreated children with PKU developed

The treatment for this is diet by limiting intake of Phe. Untreated children with PKU developed intellectual disability and often autism. The prevalence of autism in PKU has dropped from 20% to around 5% due to early detection and treatment with diet. Even if PKU is treated with diet, there is a slightly higher chance of lifelong neuropsychiatric problems including ASD (Bilder et al. 2017). If PKU is identified early, the child will have fewer problems. Newborn screening in all US states and

PKU is identified early, the child will have fewer problems. Newborn screening in all US states and Canada detects PKU; however, children born in areas that do not have newborn screening might still be evaluated for this disorder (Baieli et al. 2003).

As in phenylketonuria, an increasing number of metabolic disorders have interventions that improve outcome. While the following are not associated with ASD, they are causes of developmental disability that have treatments that can change outcome if identified on newborn screening. Children with galactosemia, a disorder of sugar metabolism, if untreated will develop cataracts, kidney failure, liver failure, and brain damage. Galactosemia can be treated with dietary elimination of galactose.

liver failure, and brain damage. Galactosemia can be treated with dietary elimination of galactose. Children with biotinidase deficiency can have variable presentation but, if left untreated, can have developmental delays, vision or hearing loss, seizures, ataxia, hair loss, and/or candidiasis (a fungal infection). This is treated in some cases with oral biotin and avoiding raw eggs, which decrease absorption of biotin. Tyrosinemia is another disorder of protein metabolism that causes

decrease absorption of biotin. Tyrosinemia is another disorder of protein metabolism that causes intellectual disability and kidney and liver damage. It is treated with low-protein diet and liver transplant if needed. The most severe form of the organic aciduria, maple syrup urine disease, causes vomiting, dehydration, hypotonia, seizure, brain injury, pancreatitis, coma, and ultimately death. Symptoms are prevented with dietary modification. Other inborn errors may be seen in children with

Symptoms are prevented with dietary modification. Other inborn errors may be seen in children with nonspecific symptoms, and many are without specific treatments to date. The disorders included in newborn screening programs are ones that are not as rare and have interventions that prevent symptoms.

Mitochondrial disorders occur when there are mutations in the maternally derived mitochondrial genes. Mitochondria are small organelles that are involved in producing energy in each cell of the body. These organelles contain their own genetic code that is separate from the genetic code in the nucleus. The mitochondria are contained in the egg, but not in the sperm, so all mitochondria and their DNA are inherited from the mother. However, the mother might have fewer and less intense symptoms,

DNA are inherited from the mother. However, the mother might have fewer and less intense symptoms, or possibly more symptoms, depending on the number of functional mitochondria that are inherited. These disorders are rare in the general population and no screening tests are accurate. It has been suggested that there is an increased rate of mitochondrial abnormalities among children with ASD. Metabolic findings on laboratory testing could be causative or may be secondary to other causes of the

findings on laboratory testing could be causative or may be secondary to other causes of the symptoms of ASD. Mitochondrial dysfunctions result in increased oxidative stress and changes in energy metabolism. Symptoms suggestive of mitochondrial disorders are excessive fatigue, severe hypotonia, cyclic vomiting, visual problems, hearing problems, poor growth, and/or seizures. Specialized testing including muscle biopsy may be necessary to identify mitochondrial disorders. Specialists in metabolic

muscle biopsy may be necessary to identify mitochondrial disorders. Specialists in metabolic genetics or child neurology are consulted.

Treatment Goals Metabolic testing includes an array of specific biochemical analyses ordered as part of a medical workup of an individual with a history and physical examination suggesting evaluation of a specific category of metabolic disorders. The goal of the metabolic testing is to identify a specific inborn error of metabolism. Some of these inborn errors of metabolism have identified dietary or vitamin treatments that can help limit or improve the symptoms. Many inborn errors of metabolism

or vitamin treatments that can help limit or improve the symptoms. Many inborn errors of metabolism do not have a known effective treatment. New therapies are under study for many disorders that range from dietary modification, pharmacologic replacement of enzyme, and gene therapy. Diagnosis of an inborn error of metabolism helps families understand the etiology of the developmental disability or other symptoms present in the child and allows for counseling regarding heritability. Specific

or other symptoms present in the child and allows for counseling regarding heritability. Specific treatment interventions may be recommended. Metabolic testing is not routinely done to evaluate the nutritional status of children with limited diets.

Clinical Uses The level of metabolic testing indicated varies from child to child and situation to situation. All children should have some form of newborn screening to identify the most common and most treatable types of inborn errors of metabolism. Children diagnosed with ASD should have a thorough history and physical exam done by a medical professional with experience in autism spectrum disorders. Additional testing for metabolic disorders is not required in every child with an autism

disorders. Additional testing for metabolic disorders is not required in every child with an autism spectrum disorder (Myers 2007; Campistol et al. 2016). Children with a history of unusual regression later than age 3 or regression with illness, weakness unexplained by other causes, organomegaly or other evidence of storage disorders, significant hearing impairment, eye findings consistent with a metabolic disorder, or other findings suggestive of a specific etiology should be considered for

a metabolic disorder, or other findings suggestive of a specific etiology should be considered for metabolic evaluation.

Children with autism and history of severe seizures especially those resistant to treatment may also be considered for underlying metabolic etiologies. Unusual gastrointestinal disturbances, especially cyclic vomiting or frequent vomiting with mild illness, may indicate metabolic disorder. Children with prominent hypotonia, ataxia, movement disorders, or motor regression may also be considered for metabolic testing based on history and physical examination.

For many of these children, referral to a geneticist or metabolic expert is the most efficient way to focus the metabolic evaluation. For most patients, a tiered level of testing is done. The least invasive tests indicated by the symptoms that are most likely to give information are ordered first and then work up based on the history to more invasive testing like skin or muscle biopsy.

Metachromatic Leukodystrophy  Synonyms MLD; Scholz’s disease; Sulfatide lipidosis; Sulfatidosis  Short Description or Definition Metachromatic leukodystrophy (MLD) is a rare genetic disorder that worsens over time. Symptoms are primarily neurological and related to white matter degeneration, although other organs can also be affected. Psychiatric symptoms often occur. In the early stages, MLD may be confused with autism.

Categorization Metachromatic leukodystrophy (MLD) is a degenerative white matter disease, which is also classified as a lysosomal sphingolipid storage disease. Given the sudden neurological regression associated with MLD, early stages of this disease can sometimes be confused with autism spectrum disorders, including childhood disintegrative disorder and Rett disorder. As MLD progresses, the pronounced neurological symptoms distinguish it from autism spectrum disorders.

Epidemiology MLD is classified as rare, with an estimated prevalence ranging from 1:40,000 to 1:100,000 among individuals of European decent. However, higher prevalence has been recorded in several small ethnic groups such as Navajo Indians in the United States and Habbanite Jews and Arabs in Israel. MLD is caused by a deficiency of arylsulfatase A, a lysosomal enzyme that helps degrade cerebroside sulfate. As a result, sulfatide builds up intracellularly. This occurs primarily in Schwann cells

sulfate. As a result, sulfatide builds up intracellularly. This occurs primarily in Schwann cells and oligodendrocytes, causing demyelination and decreased white matter.

Over 100 mutations have been identified as a cause of MLD, making it genetically quite heterogeneous. Among Caucasian patients affected by MLD, 2 alleles are common, A and I. Together, these account for roughly 50% of cases. Furthermore, there is a well-documented genotype-phenotype correlation in MLD. Homozygosity for null alleles such as I, which do not yield any enzyme activity whatsoever, always produces the most severe form of the disease, with late infantile onset and rapid progression.

produces the most severe form of the disease, with late infantile onset and rapid progression. In contrast, homozygosity for alleles such as A that allow low levels of enzyme activity is typically associated with adult onset and gradual progression. Heterozygosity for both types of alleles typically produces an intermediate form of MLD, though there is significant overlap between juvenile- and adult-onset forms.

There are three onset patterns of MLD, described in more detail in the next two sections. Between 40% and 50% of cases are classified as “late infantile,” 30–40% as “juvenile,” and around 20% as “adult.”

Natural History, Prognostic Factors, Outcomes There are three main forms of MLD, differentiated according to age at onset. Further differentiation can be made according to the pattern of progression and symptoms. Late infantile MLD arises in the first 2 or 3 years of life. Progression is typically rapid; patients succumb to the disease within 5–6 years. In this form, neurological symptoms are usually the first sign, though early stages of MLD can cause behavioral changes such as social

are usually the first sign, though early stages of MLD can cause behavioral changes such as social regression and withdrawal.

In adult-onset MLD, it is more common for psychological and behavioral symptoms to appear first, with neurological impairment appearing slightly later on. Early on, this form of MLD can be confused with schizophrenia, though the emergence of neurological symptoms clearly distinguishes the two. In contrast to late infantile MLD, progression in the adult form is much more gradual. This type of MLD typically emerges early in adulthood, though some cases have described onset as late as 50–60 years

typically emerges early in adulthood, though some cases have described onset as late as 50–60 years of age. Juvenile-onset MLD begins between the ages of 3 and 16, with widely variable progression. Symptoms can develop as rapidly as the late infantile form, yet some patients can survive into early adulthood.

Clinical Expression and Pathophysiology The ultimate phenomenology of all forms of MLD is thought to result from demyelination of neurons, triggered by an accumulation of sulfatide in oligodendrocytes, Schwann cells, and neurons. This accumulation is caused by a deficiency of the enzyme arylsulfatase-A, which is responsible for degrading sulfatide. Although the accumulation of sulfatide appears to trigger demyelination, the mechanism is not yet clear.

As mentioned above, MLD has several patterns of onset. Initial symptoms vary both across and within the subtypes of MLD. Here we focus on the early infantile- and juvenile-onset forms, which, when accompanied by a pronounced regression, may initially be difficult to distinguish from regressive ASDs, such as childhood disintegrative disorder and Rett disorder, but also may have subtle enough initial onset patterns to be mistaken for a previously “unrecognized” ASD.

Dramatic regressions of the type seen in both childhood disintegrative disorder and Rett disorder are most commonly associated with the late infantile form of MLD. Generally this form of MLD is accompanied by neurological signs, including gait disturbances, and abnormal movement patterns. It can also be accompanied by a more general loss of developmental milestones, including speech, cognition, and self-help skills. Abnormal movement patterns may be interpreted as the hallmark repetitive

and self-help skills. Abnormal movement patterns may be interpreted as the hallmark repetitive behaviors of other ASDs. When coupled with developmental losses, these changes may be interpreted as an ASD. However, a careful neurological exam may reveal other changes, e.g., depressed deep tendon reflexes, positive Babinski sign, and muscular hypotonia, not consistent with ASD (although Rett disorder is also accompanied by neurological changes). Early infantile MLD progresses rapidly, however, to

is also accompanied by neurological changes). Early infantile MLD progresses rapidly, however, to severe neurological signs, including spastic quadriplegia and severe dementia, and ultimately death. The juvenile onset of MLD can manifest more subtly in changes in school performance, psychiatric symptoms, etc. Sometimes the first neurological signs can be as subtle as clumsiness and poor coordination. Once again, when subtle, it is easy to imagine that this constellation of symptoms could be

Once again, when subtle, it is easy to imagine that this constellation of symptoms could be interpreted as a previously unidentified ASD. These symptoms may be static for an extended period, sometimes even years. However, a neurological exam may reveal the changes described above. Once the disease begins to declare itself in clear neurological signs and symptoms, the progression generally becomes more rapid and similar to early infantile MLD.

Evaluation and Differential Diagnosis The majority of signs and symptoms of MLD are neurological. Thus, a detailed neurological exam is an essential first step in evaluating suspected MLD, or for that matter, any deterioration of adaptive skills. Subtle neurological signs which point to the early stages of MLD may be picked up on exam, even if there are no obvious neurological deficits. The disease can sometimes first be manifested in behavioral changes. Therefore, it is important that any workup

can sometimes first be manifested in behavioral changes. Therefore, it is important that any workup for a developmental derailment, as commonly seen in the ASDs, includes MLD on the differential. However, with the progress of MLD, dramatic neurological disturbances are inevitable and will be obvious both clinically and on exam. Neuroimaging, in particular MRI and MRS, may be a powerful tool in establishing a diagnosis. Areas of T2 hyperintensity (see fMRI section), initially in the

tool in establishing a diagnosis. Areas of T2 hyperintensity (see fMRI section), initially in the periventricular areas but spreading from there, may be the first sign. Other findings are common. For a review of this topic, please see Kim et al. (1997) or Gieselmann and Krägeloh-Mann (2010).

Laboratory testing is important. Both blood and urine will show evidence of MLD. The level of arylsulfatase enzyme activity can be tested in the blood leukocytes. Elevated urinary excretion of sulfatide over a 24-h period is also a sensitive marker. There are limitations to genetic testing for MLD due to the large number of mutations that can underlie the disease. Prenatal diagnosis of MLD can be done using cells from chorionic villi. The differential diagnosis for MLD includes a number of

be done using cells from chorionic villi. The differential diagnosis for MLD includes a number of psychiatric disorders during the early stages, including attention disorders and psychotic disorders. Later, degenerative neurological disorders, including other leukodystrophies such as Krabbe disease, dominate the differential. Most relevant to this discussion, the combination of developmental derailment, including social changes and the loss of adaptive milestones, coupled with subtle

derailment, including social changes and the loss of adaptive milestones, coupled with subtle neurological signs can suggest an ASD. Any evaluation of new ASD should include MLD on the differential, with heightened suspicion in cases of regressive ASD.

Treatment Therapeutic options for MLD are limited. In some cases, hematopoietic stem cell transplantation can be beneficial, but only under a limited set of conditions (see Gieselmann and Krägeloh-Mann 2010). A number of experimental therapies are being explored currently, including enzyme replacement therapy and gene therapy. However, at this point, there is no cure for MLD.

Metacognition in Autism  Definition “Metacognition” can be thought of as “thinking about thinking.” More specifically, metacognition is characterized as one’s awareness of and ability to regulate one’s own mental states (Flavell 1979). John Flavell (1979), who originally termed the definition, established a taxonomy of metacognition, distinguishing between “metacognitive knowledge,” an individual’s beliefs and knowledge about cognitions (including declarative knowledge, procedural knowledge, and

beliefs and knowledge about cognitions (including declarative knowledge, procedural knowledge, and knowledge about strategy use), and “metacognitive skills,” an individual’s ability to assess and control their own cognitive processes. Since Flavell’s seminal work, researchers have reinterpreted and adjusted Flavell’s original definition. Currently, most researchers agree that metacognitive skills involve reflective processes that monitor and increase the efficiency of underlying cognitive

skills involve reflective processes that monitor and increase the efficiency of underlying cognitive processes in a number of ways.

Take for example the various adaptive metacognitive processes involved in completing a study task. Metacognitive skills are required to form a representation of one’s existing learning and comprehension, evaluate the demands of the task and subsequently choose the appropriate strategy for task completion, monitor one’s progress towards the task goal (perhaps adjusting strategy use), and reflect on one’s decisions/performance during and after task completion (Flavell 1979; Lai 2011).

reflect on one’s decisions/performance during and after task completion (Flavell 1979; Lai 2011). Unsurprisingly then, metacognitive processes are often considered essential for successful learning and a wide range of literature has explored the relation between metacognitive accuracy and learning success. In particular, accurate metacognition seems to be associated with good study skills. Additionally, training metacognitive skills appears to increase academic achievement (e.g., Flavell 1979;

training metacognitive skills appears to increase academic achievement (e.g., Flavell 1979; Perry et al. 2018; Van der Stel and Veenman 2014).

Moreover, metacognitive abilities are not just important for schooling/academic achievement. Knowing your own thoughts is crucial to accessing therapeutic treatments. A central pillar of common therapies, such as Cognitive-Behavioral Therapy (CBT) and Mindfulness-Based Therapy, is the ability to identify and reflect on one’s own cognitions. Indeed, recent research has suggested metacognitive accuracy may moderate the efficacy of CBT in children (Jones et al. 2019). Additionally, poor awareness

may moderate the efficacy of CBT in children (Jones et al. 2019). Additionally, poor awareness of one’s own emotions appears to influence the outcome of psychodynamic therapy in adults (Ogrodniczuk et al. 2011). As such, impairments in metacognitive skills likely make it difficult to implement psychological therapies successfully. However, this topic remains understudied, and more research is required to understand the relationship between metacognitive abilities and therapeutic efficacy.

Historical Background The root of the word autism comes from the Greek word “autos,” which directly translates as “self.” Historically, autism has been linked to theories surrounding the self, with early theories conceptualizing autism as an extreme form of egocentrism (Bleuler 1950; Kanner 1943). Indeed, Leo Kanner originally “borrowed” the term autism from the work of Bleuler, who had coined it to describe an extreme self-focus and social withdrawal in his patients (with schizophrenia). In

it to describe an extreme self-focus and social withdrawal in his patients (with schizophrenia). In contrast, other theories have attributed various autistic behaviors to having an “absent self” (Frith 2003). While it is now well accepted that autistic individuals do not lack a sense of self, a growing body of research suggests that certain aspects of self-representation may pose challenging to autistic individuals.

Current Knowledge While metacognitive research in the wider literature has been ongoing for 40 years, researchers have only recently begun to explore metacognitive skills in autism. To date, there are only 25 published studies that have investigated metacognition in autism, with somewhat equivocal results concerning autistic metacognitive abilities. While the majority of these studies suggest metacognitive impairments can be seen in autism (e.g., Grainger et al. 2014; Williams et al. 2018),

metacognitive impairments can be seen in autism (e.g., Grainger et al. 2014; Williams et al. 2018), other studies find metacognitive accuracy to be entirely typical (e.g., Grainger et al. 2016), or report mixed results (see Wojcik et al. 2013; Cooper et al. 2016). Such heterogeneous results make it is difficult to make strong conclusions surrounding global metacognitive abilities in autism.

Mixed findings within the literature may be associated with methodological issues within the existing literature; firstly, not all existing studies of metacognitive accuracy in autism have matched their autistic group and comparison group for both age and cognitive ability. While matching for baseline variables is essential in all between-group studies of cognition in autism, this is particularly true for studies of metacognition, given the wider literature that suggests both age and cognitive

true for studies of metacognition, given the wider literature that suggests both age and cognitive ability strongly correlate with metacognitive accuracy. Another possible explanation for mixed findings within autism research is that studies exploring metacognition in autism have employed a wide range of metacognitive tasks, as well as self-report measures, across different underlying domains (e.g., meta-memory, meta-perception).

It is likely that self-report measures of metacognitive skills do not measure the same underlying processes as explicitly as those assessed using behavioral measures (Craig et al. in press). There is often little consistency between self-reported abilities and metacognitive performance on a task, in both nonautistic and autistic adults (see Grainger et al. 2016). Additionally, recent findings suggest that metacognitive skills in autism appear unimpaired, when assessed using implicit measures of

that metacognitive skills in autism appear unimpaired, when assessed using implicit measures of metacognition (e.g., Carpenter et al. 2019; Nicholson et al. 2019). This may suggest a dichotomy between implicit and explicit metacognitive skills in autism, though it is important to note that the underlying processes driving performance on implicit tasks in autistic and nonautistic individuals may differ (see Nicholson et al. 2019 for a discussion of this in more detail).

There does appear to be some consistencies across research findings when patterns of metacognitive performance are broken down by specific task type. Generally, studies find that autistic participants are not as accurate as nonautistic participants when judging explicit confidence in their own performance (see Carpenter et al. 2019 for a review). In contrast, on tasks that ask participants to make judgments-of-learning (JOLs), concerning how well they think they have learnt information, we

make judgments-of-learning (JOLs), concerning how well they think they have learnt information, we consistently find no evidence of metamemory impairments in autism (see Grainger et al. 2016; Wojcik et al. 2014).

Another “classic” measure of meta-memory (one’s abilities to represent one’s own memory states) asks participants to make feeling-of-knowing (FOK) judgments. During a typical feeling of knowing task, participants are tested to see if they can recall some recently learned information (e.g., a list of words). After recall ability is assessed, participants are then asked to assess the likelihood that they would know/recognize information (e.g., words) they currently cannot remember (e.g.,

that they would know/recognize information (e.g., words) they currently cannot remember (e.g., assessing the likelihood of correctly recognizing words from a recently learned word list, which you currently cannot recall off the top of your head). Both published studies of FOK accuracy in autism report poorer accuracy on an FOK task compared to comparison participants (Grainger et al. 2014; Wojcik et al. 2013), though Wojcik et al. only found impairments when the FOK judgments assessed

Wojcik et al. 2013), though Wojcik et al. only found impairments when the FOK judgments assessed participants’ episodic memory for unrelated word pairs and not when FOK judgments assessed semantic general knowledge of word-picture pairs. Differences in accuracy in autism across confidence judgments, FOK tasks, and JOL tasks are interesting from a theoretical point of view. Within the typically developing literature, researchers have questioned the idea that individuals (autistic or nonautistic)

literature, researchers have questioned the idea that individuals (autistic or nonautistic) have stable metacognitive abilities that are employed across different tasks, arguing against a general metacognitive ability. These arguments are largely driven by findings that an individual’s metacognitive accuracy does not always appear consistent across tasks, nor demonstrate strong test-retest reliability. Importantly, only domain-general accounts of metacognition predict consistent metacognitive

Importantly, only domain-general accounts of metacognition predict consistent metacognitive accuracy across tasks/domains in autism.

Finally, to date few studies have considered the role co-occurring conditions may have on metacognitive skills in autism. Research suggests that mental health conditions, such as anxiety or depression, are particularly common in autism (see Simonoff et al. 2008). For example, while estimates suggest that ~10% of individuals in the general population demonstrate high levels of alexithymia (a subclinical condition characterized by difficulties identifying and describing emotions), studies suggest

condition characterized by difficulties identifying and describing emotions), studies suggest that 50% of autistic individuals may meet the criteria for alexithymia (Hill et al. 2004). It is important to acknowledge high levels of co-occurring conditions in autism, given findings that metacognition is impacted by mental health conditions. Those with high levels of depression, anxiety, and alexithymia have shown significantly weaker reflection and monitoring skills than those with low levels (e.g.,

have shown significantly weaker reflection and monitoring skills than those with low levels (e.g., Bressi et al. 2017; Fonagy et al. 1996; Ladegaard et al. 2016). High levels of anxiety in particular have been found to be significantly related to poor accuracy when judging how well material has been learned (confidence judgments; Fonagy et al. 1996). To date, it is unclear to what extent weaker performance on metacognitive tasks is related to the presence of additional co-occurring conditions.

Currently, there is not enough evidence to determine which, if any, of these possibilities best explain the pattern of results found in studies of metacognition in autism. As such, it will be important that future research investigates the nature of the underlying processes that autistic individuals use to inform their metacognitive judgments, and whether these processes depend on the types of metacognitive tasks employed.

Future Directions and Implications It is important to consider the implications of research exploring metacognitive abilities in autism. Crucially, metacognitive skills are trainable; studies suggest that the academic performance of students significantly improves following training in metacognitive skills. In fact, training in metacognition has been shown to improve academic and work place performance across all levels of cognitive ability (e.g., Perry et al. 2018). Thus, the study of

performance across all levels of cognitive ability (e.g., Perry et al. 2018). Thus, the study of metacognition in autism could have important implications for educational practice.

Considering the high incidence of co-occurring conditions in autism and the fact that therapies aimed at alleviating mental health difficulties often rely on good metacognitive skills, metacognitive research could also have important implications for autistic mental health and wellbeing. Moreover, recent research has found metacognitive skills in autism to be strongly associated with social skills (Leung et al. 2016). While the causal direction of this relationship is not yet clear, it does

(Leung et al. 2016). While the causal direction of this relationship is not yet clear, it does suggest that training in metacognitive skills has the potential to influence social-interaction proficiency in autism.

Ultimately, future research in autism should aim to determine a clearer profile of metacognitive strengths and weaknesses. Identifying particular areas of metacognitive strengths and difficulties may inform autistic educational and training practices with an end focus of positively impacting academic and social skills in autism, as well as potentially increasing the tools autistic individuals have to improve their health and well-being.

Metallothionein  Definition Metallothioneins are proteins that bind metals, controlling the levels of these metals in the body and preventing toxic effects (Owens et al. 2008). Some hair and urine analysis studies have shown that levels of heavy metals are increased in children with autism (Owens et al. 2008). Animal studies have demonstrated that mice with dysfunctional metallothioneins are at increased risk for heavy metal (specifically, mercury) poisoning but do not show baseline behavioral

increased risk for heavy metal (specifically, mercury) poisoning but do not show baseline behavioral sequelae. Additionally, there are natural differences in metallothionein genetics, which may lead to the creation of faulty metallothionein proteins, predisposing an individual to heavy metal sensitivity. The hypothesis that children with autism have faulty metallothionein proteins and are therefore more sensitive to metals from the environment and potentially vaccines has been proposed as an

more sensitive to metals from the environment and potentially vaccines has been proposed as an explanation for the cause of autism.

However, there are no peer-reviewed studies showing an association between metallothionein abnormalities and autism. Despite this lack of support, some scientists and clinicians have attempted to treat autism by increasing metallothionein func-tion. However, no peer-reviewed clinical trials have provided any evidence to support this treatment (Owens et al. 2008).

Metaphoric Language  Synonyms Idiosyncratic language  Definition Individuals with autism spectrum disorders (ASD) may produce speech that appears to be irrelevant to the current communicative context. For example, Kanner (1946) described a child with ASD who would yell, “Don’t throw the dog off the balcony!” whenever he was about to throw something. His parents reported that several years earlier, they had been staying in a hotel with a balcony and warned the child not to throw his stuffed toy

they had been staying in a hotel with a balcony and warned the child not to throw his stuffed toy dog over the railing. Kanner emphasized that this “metaphorical language” was not irrelevant or meaningless. Rather, individuals with ASD attach unique meanings to these “figures of speech” based on specific past experiences.

Methylphenidate  Synonyms Ritalin  Definition Methylphenidate: Methylphenidate is also a stimulant medication. Although it also enhances release and blocks reuptake of dopamine, it is less potent than the amphetamines. There are many preparations with methylphenidate including immediate-release compound in which the tablet is rapidly absorbed and the duration of action is approximately 4 h. When using the immediate-release compounds, it is likely that the dose will have to be repeated twice or

using the immediate-release compounds, it is likely that the dose will have to be repeated twice or even three times per day. There are also long-acting formulations marketed under several different trade names. These long-acting formulations do not have to be repeated throughout the day. However, various products may only come in particu-lar strengths. Therefore, becoming familiar with the different brands of medications is important for using these long-acting formulations of methylphenidate

brands of medications is important for using these long-acting formulations of methylphenidate in the clinic. Methylphenidate also comes in a transdermal skin patch. The skin patch can be worn for 8–9 h per day and replaced with a new patch each day. The skin patch comes in several strengths and may require some trial and error in that the oral dose of methylphenidate may not immediately translate to the dose of the skin patch. One drawback of the current skin patch preparations is their high

to the dose of the skin patch. One drawback of the current skin patch preparations is their high cost.

The immediate-release formulation of methylphenidate was studied in a large-scale, multisite trial in children with autism spectrum disorders (Research Units on Pediatric Psychopharmacology 2005). The study included three doses of methylphenidate (low to high) and placebo in a crossover trial (each subject received the study treatments in random order under double-blind conditions). All active dose of methylphenidate was superior to placebo in this short-term study. In contrast to the benefits

of methylphenidate was superior to placebo in this short-term study. In contrast to the benefits observed in typically developing children with attention deficit/hyperactivity disorder, however, in children with autism spectrum disorders who were hyperactive, impulsive, and distractible, the beneficial effects were modest. The study in children with autism spectrum disorders showed that doses that are well tolerated in typically developing children with attention deficit/hyperactivity disorder were

well tolerated in typically developing children with attention deficit/hyperactivity disorder were less well tolerated in children with autism spectrum disorders. Intolerable adverse effects included irritability, insomnia, loss of appe-tite, and increased stereotypic behavior. These results suggest that when treating children with autism spectrum disorders accompanied by hyperactivity and impulsiveness, the low-to-medium doses are likely to produce modest benefit. However, attempts to achieve a

the low-to-medium doses are likely to produce modest benefit. However, attempts to achieve a greater benefit by pushing the dose upward are likely to encounter dose-limiting adverse effects.

Mexico and Autism  Historical Background Public awareness of autism spectrum disorder (ASD) in Mexico can be traced back to the late 1970s when families affected by ASD began searching for places where their children could receive treatment. Given that fewer options for diagnosis and treatment existed in other states, most families headed to Mexico City. In the early 1970s, children with ASD were often misdiagnosed and frequently placed in treatment in special education schools for children

often misdiagnosed and frequently placed in treatment in special education schools for children with other types of disabilities, thereby preventing them from receiving appropriate intervention. In the following section, we cover the historical background of ASD in Mexico based on the firsthand experience of the second author, Dr. Carlos Marcín. Dr. Marcín has been active in attending to the needs of children and families affected by ASD for over 40 years, both as an academic and as a clinician.

First Phase: 1970–1990 Autism was first conceptualized as a psychiatric disorder by the National Ministry of Health and treated in Mexico City at the “Dr. Juan N. Navarro” Children’s Psychiatric Hospital, the only public institution treating children and adolescents with autism in the country at that time. Treatment offered was medical, from a psychodynamic perspective, which was the main theory in Mexico for explaining autism. Given the growing need for treatment, families organized to form

in Mexico for explaining autism. Given the growing need for treatment, families organized to form Centro Educativo Domus, a nonprofit organiza-tion that began offering applied behavior analysis (ABA), which had been successful in the United States in teaching appropriate behaviors to individuals with autism (Lovaas et al. 1974; Lovaas 1987).

Another effort worth mentioning was the opening of the Center for Autism at Universidad Intercontinental in Mexico City. This center was created with the support of the Japanese government. Dr. Tetsuo Ishi began providing communication-acceptance treatment. In 1983, at the same university, Dr. Marcín led the creation of a Master’s program in autism. Unfortunately, this program closed after graduating only one class.

In 1990, the Mexican Clinic for Autism and Developmental Disorders (Clínica Mexicana de Autismo y Alteraciones del Desarrollo, A.C., CLIMA) was founded by Dr. Marcín and a group of families that needed treatment for their children with autism. CLIMA, a nonprofit, private organization, began offering evidenced-based treatment for children, providing family counseling, and training professionals. CLIMA’s treatment model integrated elements of applied behavior analysis (ABA), Treatment and

CLIMA’s treatment model integrated elements of applied behavior analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), Picture Exchange Communication System (PECS), sensory integration therapy, and social skills training. A goal of the intervention was to promote children’s educational and social inclusion as early as possible.

In 1990, CLIMA organized the first interna-tional meeting on autism in Mexico, Autismo en el Mundo, Autismo en México, with the participation of Dr. Bernard Rimland, from the San Diego Autism Research Institute. This 3-day meeting involved families and professionals and covered diagnostic, etiological, and treatment issues for people with autism. During his interventions, Dr. Rimland also confronted the psychodynamic idea, prominent in Mexico, of the “refrigerator mother” as the cause of

the psychodynamic idea, prominent in Mexico, of the “refrigerator mother” as the cause of autism, offering instead a possible neurodevelopmental explanation.

Second Phase: 2000–Present During this phase, CLIMA has continued working to ensure the provision of evidence-based treatment, offering continuing education opportunities for professionals and families, and participating in research. In 2005, CLIMA organized a second conference on Autismo en el Mundo, Autismo en México. This time, the conference was also supported by Universidad Iberoamericana.

This 2-day meeting had the participation of renowned speakers in the field of autism, such as Simon Baron-Cohen, Clara Lajonchere, and Matthew State, who expounded upon the most current research findings concerning genetic factors and theory of mind. In 2007, CLIMA, with the support of Autism Speaks and the Carlos Slim Health Foundation, organized a 3-day international meeting, Autism Speaks to the World (El Autismo habla al Mundo). The meeting was free of charge for 2000 participants (families

World (El Autismo habla al Mundo). The meeting was free of charge for 2000 participants (families and professionals) and broadcasted online free of charge to about 30,000 more participants through the Mexican telecommunications company, Telmex. The meeting covered topics about early detection, neurological findings, evidence-based practices, genetic findings, learning and communication disorders in autism, and prevalence. Keynote speakers were from different countries and included Geraldine

in autism, and prevalence. Keynote speakers were from different countries and included Geraldine Dawson, Eric Courchesne, Pat Levitt, Eric Fombonne, Sam Odom, Clara Lajonchere, Helen Tager-Flusberg, Ami Klin, and Andy Shih (United States); Tony Charman (Great Britain); Carlos Marcín (Mexico); and Cecilia Montiel (Venezuela).

An event of special importance in the history of autism in Mexico was the Pan-American Autism Awareness Training Initiative (PAAATI). From 2009 to 2012, yearly meetings and workshops were held. The first two meetings focused on identifying the needs of Mexican and Latin American children with autism and their families in the home setting. Organizations supporting this ini-tiative were CLIMA, Autism Speaks, American Pediatrics Association, Carlos Slim Health Foundation, and Miami University. The

Speaks, American Pediatrics Association, Carlos Slim Health Foundation, and Miami University. The third meeting, in 2011, focused on family’s burden and in training 70 professionals on ABA interventions. The training was given by Deborah Fein from the University of Connecticut and Lynn Cohen Bren-nan from Boston University.

In 2012, the fourth meeting was focused on collecting information from families that led to the development of a Manual for Intervention at Home to be delivered to children with autism by their parents. This meeting was led by Wendy Stone, Inger Brooke, and Carlos Marcín. The motivation was princi-pally that the Manual could be helpful to Spanish-speaking families in Latin America and the United States.

Because of the PAAATI, in 2010, a national early detection campaign was carried out with the support of the Carlos Slim Health Foundation. Using The Modified Checklist for Autism in Toddlers (M-CHAT), adapted to the Mexican culture, children at risk of autism were identified. A workshop for the families of these children was offered so that ABA intervention at home could be provided. The intervention was compiled on a manual, The Programa de Intervención Temprana, and distributed among families.

Over the years, nonprofit organizations have opened in many cities across Mexico. Many of them follow CLIMA’s service model, but others do not clearly state the type of intervention they provide (http://www.educacionespecial.sep.gob. mx/pdf/doctos/6Boletin/Directoro_teleton.pdf).

Legal Issues, Mandates for Service From 1970 to the mid-1980s, children with disabilities only received services from the Mexican health system, under the auspice of the General Health Law (Ley General de Salud). Services were provided in rehabilitation centers, psychiatric hospitals, and special education schools (in coordination with the educational system). However, the process of inclusion of students with special needs into the general education sys-tem began in the late 2000s.

of students with special needs into the general education sys-tem began in the late 2000s. Specifically, in the case of autism, inclusion practices came later, perhaps because of the lack of awareness and epidemiological data about autism in Mexican children.

A changing moment for the mandate of services to people with autism came on March 30, 2007, when Mexico, along with other coun-tries, signed the Convention on the Rights of Persons with Disabilities (CRPD) at the United Nations (https://www.un.org/development/desa/ disabilities/convention-on-the-rights-of-persons- with-disabilities.html). The agreement stated a commitment to avoid discriminating against people with disabilities, viewing them as persons with rights and creating the structure to

against people with disabilities, viewing them as persons with rights and creating the structure to increase inclusive practices at all levels of society. Mexico committed to report to the UN its progress toward this goal with the UN providing feedback about the progress obtained.

Mexico’s first report in April 2011 focused on the actions taken to provide rehabilitation to people with physical disabilities. In addition, in the 2010 census, data regarding the number of people with disabilities in Mexico began to be collected, indicating that the Mexican population with disabilities was similar to other countries, ranging between 6% and 9%. In this report, ASD was not included.

In 2011, the General Law for the Inclusion of Persons with Disabilities was approved by the Mexican Congress. The law stated that the state had to protect and ensure the human rights and fundamental freedoms of people with disabilities with the goal of their full inclusion in society. The law enunciated five disabilities but ignored ASD as one of them. This would provoke a reaction among families and advocates of ASD, who argued and fought to have ASD included. This reaction resulted in the

and advocates of ASD, who argued and fought to have ASD included. This reaction resulted in the General Law for the Attention and Protection of People with Autism Spectrum Condition (see Social Policy and Current Controversies below).

In terms of the education of children with autism, it has been reported that, since 1993 when Mexico enacted a federal law to improve the education of people with disabilities, the Secretariat of Public Education (Secretaría de Educación Pública, SEP) has provided special education services to children with autism (Tuman et al. 2010; Harris and Barton 2016). Before 2015, services were provided by two pro-grams, the Centers of Multiple Attention (Centros de Atención Múltiple, CAM) and the Units

two pro-grams, the Centers of Multiple Attention (Centros de Atención Múltiple, CAM) and the Units of Support Services for Regular Education (Unidades de Servicios de Apoyo a la Educación Regular, USAER). From 2015 to the present, services to educate people with disabilities have been provided in inclusive classrooms through the Unit for Special Education and Inclusive Education (Unidad de Educación Especial y Educación Inclusiva, UDEEI). However, most children with autism attending regular

Especial y Educación Inclusiva, UDEEI). However, most children with autism attending regular schools have a one-on-one aide, typically paid for by the family.

Overview of Current Treatments and Centers Provision of services in Mexico is not uniform, and little intervention is provided through the National Ministry of Health or public institutions. According to the National Ministry of Health, about 10,000 children receive health services in its institutions, from which an estimate of 2400 diagnosed with ASD receive some level of monthly intervention (www.gob.mx/salud/pre nsa/139-deteccion-tardia-de-autismo-impide-aten

level of monthly intervention (www.gob.mx/salud/pre nsa/139-deteccion-tardia-de-autismo-impide-aten cion-oportuna-a-estos-infantes). In 2016, the local government in Mexico City opened the Clinic for Autism (Clínica de Autismo, www.cdmx.gob.mx/ vive-cdmx/post/clinica-de-autismo-de-la-cdmx) that offers diagnostic evaluation and intervention to families of low socioeconomic background.

Additionally, in 2016, the federal government opened the Regional Center of Ixtapaluca (Centro Regional de Ixtapaluca) to provide ser-vices to children with developmental disabilities and ASD in the State of Mexico. This Regional Center is 1 of 13 centers that provide services to children with neurodevelopmental disorders in the country, but only this one specializes in ASD (www.gob.mx/salud/prensa/nuevo-centro-region al-de-desarrollo-infantil-y-autismo-en-ixtapaluca). Other major public

al-de-desarrollo-infantil-y-autismo-en-ixtapaluca). Other major public institutions offering services to children with autism are the Children’s Psychiatric Hospital (www.sap.salud.gob.mx/principa les/%C2%BFen-d%C3%B3nde-me-atiendo/hosp ital-psiqui%C3%A1trico-infantil-dr-juan-n-navar ro.aspx), the nonprofit organization Autismex (www.autismex.iap.org.mx), and the Integral Center for Mental Health (Centro Integral de Salud Mental, Cisame, www.gob.mx/salud/

the Integral Center for Mental Health (Centro Integral de Salud Mental, Cisame, www.gob.mx/salud/ documentos/centro-integral-de-salud-mental-df), which have serviced families of low socioeco-nomic background. These institutions are in Mexico City.

Despite the services these public institutions offer, most of the intervention for autism has been provided by private clinics or centers that have different approaches and philosophies (e.g., applied behavior analysis to psychoanalysis). Since specific requirements or criteria that these centers must meet are lacking, a wide array of treatment possibilities exists, but the quality of treatment is difficult to ascertain given that infor-mation about their intervention models is not readily

is difficult to ascertain given that infor-mation about their intervention models is not readily available to the public. Most service pro-viders have an undergraduate degree in psychol-ogy; some have received specific training in ASD at the few available options (see Overview of Training below), but many have been trained as apprentices of senior therapists.

There are a few private institutions that provide evidence-based services to people with autism. Many of them were created by groups of parents with children with autism and the professionals treating them. As mentioned before, CLIMA, founded in 1990 by Dr. Marcín and a few parents of children with ASD, is perhaps the most well-known institution to provide integral services to families affected by ASD in Mexico. It has 20 affiliated clinics across Mexico. CLIMA offers comprehensive diagnostic

by ASD in Mexico. It has 20 affiliated clinics across Mexico. CLIMA offers comprehensive diagnostic evaluations and a psychoeducational program of 25 h/week. The service model includes the expertise of psycholo-gists, speech/language pathologists, and occupa-tional therapists. Some therapists of CLIMA received the introductory training of the Early Start Denver Model (ESDM, Rogers and Dawson 2009) in 2012, with two of them already com-pleted the certification and two more currently in the process

in 2012, with two of them already com-pleted the certification and two more currently in the process of obtaining it. This is relevant con-sidering that in the whole country, there are only five therapists certified in the ESDM according to the most recent list (April 2018) of the University of California Davis, MIND Institute (http://www. ucdmc.ucdavis.edu/mindinstitute/research/esdm/ pdf/esdm_certifiedtherapists.pdf). The clinic also offers a program that supervises the inclusion of children in

The clinic also offers a program that supervises the inclusion of children in regular schools with the support of a one-on-one aide. The clinic has also participated in research projects (e.g., Hedley et al. 2010; Elsabbagh et al. 2012; Fombonne et al. 2016) and in training of professionals through courses in association with institutions of higher education.

Another well-recognized center is the Domus Autism Institute (Instituto de Autismo Domus) that started offering services to families impacted by ASD in the 1980s. Domus offers diagnostic evaluations, therapeutic interventions, and educational inclusion as well as services for adults to become as independent as possible (www.institutodomus. org). The third largest private institution, Centro Autismo Teletón, opened in 2012 as a foundation supported by business groups and the media in Mexico.

Teletón, opened in 2012 as a foundation supported by business groups and the media in Mexico. Teletón has compiled a directory including other small private centers that offer services to children with disabilities, including children with ASD, but their model of services is not publicly described or easily available (www.educacio nespecial.sep.gob.mx/pdf/doctos/6Boletin/ Directoro_teleton.pdf). Finally, Iluminemos de Azul is another nonprofit organization dedicated to creating awareness about

Finally, Iluminemos de Azul is another nonprofit organization dedicated to creating awareness about autism in society so that people with autism and their families have a better quality of life.

Overview of Research Directions Research addressing issues related to ASD is lim-ited in Mexico. However, this is not much differ-ent from other research areas. In 2012, at the beginning of the current administration, it was promised that 1% of GDP would be invested into research programs and development by the end of June 2018. However, Mexico currently spends only 0.53% of its GDP in supporting research development, compared to the average of 2.38% of the OECD countries and far from the

research development, compared to the average of 2.38% of the OECD countries and far from the highest investing countries, Israel (4.25%) and Korea (4.23%) (https://data.oecd.org/rd/gross- domestic-spending-on-r-d.htm).

Despite limited support for research, several projects have been carried out, and few research programs are currently under way, varying in approach and sub-area of expertise. One of these projects evaluated the validity of using the Autism Detection in Early Childhood (ADEC) in Mexico. Its findings suggested this instrument could be used with confidence to screen for autism (Hedley et al. 2010). Another relevant study, funded by Autism Speaks, determined that the estimated prevalence of ASD in

Another relevant study, funded by Autism Speaks, determined that the estimated prevalence of ASD in Mexico is 1 in 115 or 0.87% [95% CI (0.62, 1.1%)] (Fombonne et al. 2016). A preceding study, conducted by the same group, validated the use of John Constantino’s Social Responsiveness Scale (SRS) with the Mexican population (Fombonne et al. 2012).

Albores-Gallo et al. (2012) examined the validity of the M-CHAT (Robins et al. 1999) for use with Mexican population. In addition, Dr. Albores-Gallo, at the Children’s Psychiatric Hospital, has a line of research devoted to studying ASD in children and adolescents and has reported the conclusion of six different projects (https://sites.google.com/site/hpicomisioninves tigacion/desarrollo). Furthermore, other projects about ASD have been completed within the same institution as a requirement to

other projects about ASD have been completed within the same institution as a requirement to obtain a medical degree with a specialty in child and adolescent psychiatry (https://sites.google.com/site/hpicomis ioninvestigacion/psiquiatria-infantil-y-de-la-adol escencia).

More recently, other studies have been published as a sign of an emergence of such research programs in Mexico. For example, a study found that Mexican pediatricians could improve their knowledge about early signs of ASD in their practice so that proper referrals for comprehensive assessment by specialists could be completed and early intervention started (Zúñiga et al. 2017). This information has been shared with the Ministry of Health so that steps toward training pediatricians might be

has been shared with the Ministry of Health so that steps toward training pediatricians might be taken.

Within the educational setting and considering the international trends of inclusion, Sánchez Lizardi and Sohn McCormick (2016) surveyed general education teachers, K-12, to understand what their perspectives and needs were when educating students with ASD in their classrooms. This study found that teachers’ primary concern was their lack or limited knowledge about ASD.

Perhaps the most ambitious of research pro-grams is the Consortium of Genomic Characteri-zation of ASD in Mexican Population. This consortium was formed in 2016 by Dr. Humberto Nicolini and includes nine aca-demic, private clinics, public hospitals, and research institutions with the purpose of identify-ing the genes involved in ASD within the Mexi-can population. Presently, interviews and samples have been collected from a small number of fam-ilies affected with ASD. Because academic

samples have been collected from a small number of fam-ilies affected with ASD. Because academic insti-tutions are part of the consortium, doctoral dissertations and Masters’ theses are also in progress.

Overview of Training Presently, there are no unified efforts for the train-ing of teachers or health-related professionals about ASD in Mexico. Some of the centers men-tioned above offer a variety of learning activities that range from lectures and short-term courses to 10-month certified courses. In particular, CLIMA offers a 10-month certified course in conjunction with the National Polytechnic Institute (Instituto Politécnico Nacional, IPN). Dr. Marcín has offered this type of certified courses

(Instituto Politécnico Nacional, IPN). Dr. Marcín has offered this type of certified courses in different states of Mexico and has trained approximately 3250 professionals in addition to offering work-shops to about 8000 families in the last 28 years.

Treatment centers have invited international trainers in diagnostic instruments and interven-tions (e.g., Autismo Puebla www.autismopuebla. org), with professionals across Mexico earning these continuing education credits. Other oppor-tunities for training have been national and inter-national autism conferences, sponsored by different organizations (e.g., Carlos Slim Health Foundation, Health Ministry of Chiapas, and the National System for Integral Family Development of Yucatán). However, it

of Chiapas, and the National System for Integral Family Development of Yucatán). However, it is difficult to ascertain the implications of these learning opportunities on professional practice given that they are not offi-cially regulated.

Social Policy and Current Controversies Lay (2016) has closely followed the creation and controversies around the law pertinent to people with ASD. In 2014, an initiative to create a Gen-eral Law for the Attention and Protection of Peo-ple with Autism Spectrum Disorder was presented to the Mexican House of Representatives. The controversy was related to the term disorder, and it arose among families affected by ASD and advocates, who, from a human rights perspective, argued that this should be

affected by ASD and advocates, who, from a human rights perspective, argued that this should be changed to the term condition because it was more socially inclusive and beyond a mere clinical presentation.

Thus, on March 5, 2015, the Mexican House of Represen-tatives approved the General Law for the Atten-tion and Protection of People with Autism Spectrum Condition (http://www.diputados.gob. mx/LeyesBiblio/pdf/LGAPPCEA_270516.pdf). The Senate approved it 21 days later, being signed by the president and officially published on April 30, 2015. However, in June 1, 2015, the National Commission of Human Rights asked for an appeal of the law, arguing that some articles violated the International

Human Rights asked for an appeal of the law, arguing that some articles violated the International Convention on the Rights of Persons with Disabilities and that they were unconstitu-tional. After several months, in February of 2016, the Supreme Court declared unconstitutional only one of the articles and validated the remaining parts of the law.

Microcephaly  Synonyms Microcephalic; Microcephalus; Nanocephaly  Definition The term “microcephaly” is used to indicate a head circumference (HC) with two standard deviations (SD) below that expected for age, sex, and race. Some authors consider microcephaly when the HC is 3 SD below. A small skull suggests, in most cases, a small brain. Given that 55% of the brain is cortex, a small brain means less cerebral cortex, and it is associated with intellectual disability in approximately 30–50% of

less cerebral cortex, and it is associated with intellectual disability in approximately 30–50% of the cases. We distinguish two forms of microcephaly: primary and secondary. When it appears before the first 32 weeks of gestation, it is considered as primary microcephaly and when it appears after birth, it is considered as secondary microcephaly.

Most neurons are generated during the first 21 weeks of gestation, and neuronal connections are generated after birth. Therefore, in cases of primary microcephaly, there is often a lack of neurons, whereas in the secondary cases, the ini-tial neuronal production is usually normal, but few neural connections are produced, or there is subsequent neuronal death. The causes of both primary and secondary microcephaly may be genetic, secondary to prenatal infections or meta-bolic diseases, among

microcephaly may be genetic, secondary to prenatal infections or meta-bolic diseases, among others.

Micrographia  Definition Micrographia is abnormally small handwriting or handwriting that becomes progressively smaller and harder to read. Micrographia is a common feature of Parkinson’s disease, possibly reflecting difficulties with scaling and controlling the ampli-tude of movement (Rao et al. 2003). Micro-graphia, however, can develop as a sign of focal neurological lesions that disrupt the cortico-subcortical loop involving the putamen, thalamus, premotor cortex, and sensorimotor cortex

cortico-subcortical loop involving the putamen, thalamus, premotor cortex, and sensorimotor cortex (Denes et al. 2005; Kim et al. 1998). Difficulties in hand-writing have been documented in children with autism spectrum disorder including issues with legibility (Kushki et al. 2011), letter formation (Fuentes et al. 2009), and macrographia (Beversdorf et al. 2001; Johnson et al. 2013), but not micrographia.

Midazolam  Synonyms Dormicum; Versed  Definition Midazolam: With increasing numbers of Autism Spectrum Disorders (ASD) children, clinicians have investigated alternative pharmacological and behavioral interventions to minimize perioperative problems among ASD children (Taghizadeh et al. 2015). Currently, clonidine, dexmedetomidine, midazolam, and ketamine remain the first-line premedication therapies for ASD patients undergoing surgery (Taghizadeh et al. 2015). Midazolam is a benzodiazepine

for ASD patients undergoing surgery (Taghizadeh et al. 2015). Midazolam is a benzodiazepine medication used for anesthesia, procedural sedation, trouble sleeping, and severe agitation. Several case reports showed midazolam is an effective premedication for mild ASD cases and exhibits comparable efficacy to other administered benzodiazepines (Capp et al. 2010; Jo et al. 2017; Pisalchaiyong et al. 2005; Seo et al. 2014; Shah et al. 2009; Van Der Walt and Moran 2001).

However, ASD patients administered midazolam experienced several side effects including: “emergence phenomenon, disorientation, sensory and perceptual illusions and vivid dreams in recovery, nausea and vomiting, nystagmus, hypersalivation, and occasionally laryngospasm” (Taghizadeh et al. 2015). Furthermore, one study showed 30% of ASD patients premedicated with midazolam remained uncooperative before surgery (Van Der Walt and Moran 2001). Thus, current guidelines suggest clinicians

before surgery (Van Der Walt and Moran 2001). Thus, current guidelines suggest clinicians incorporate parents and simple behavioral strategies, such as providing comfort items, along with premedication to reduce anxiety and discomfort among ASD children before surgery. Further research is required to determine which combination of medication and behavioral techniques produce optimal outcomes among ASD children undergoing surgical operations

Midbrain  Synonyms Mesencephalon  Definition The midbrain is a component of the brain stem that plays a role in a number of central nervous system functions. It contains the substantia nigra, which has an important role in motor function. It also plays a role in vision, hearing, and arousal. Gaffney et al. (1998) found that the entire brain stem to be significantly smaller in a group with autism. Other groups have replicated the finding and extended it to the midbrain in particular. Hashimoto et

Other groups have replicated the finding and extended it to the midbrain in particular. Hashimoto et al. (1992) found that the midbrain and pons (another component of the brain stem) were significantly smaller in a group with autism in comparison to a control group. Furthermore, several studies have found functional abnormali-ties in the brain stems of subjects with autism (Maziade et al. 2000; Thivierge et al. 1990).

Midbrain Raphe  Synonyms Midbrain raphe nuclei; Nuclei of raphe; Raphe nuclei  Definition “Midbrain raphe” refers to two nuclei found in the reticular formation of the midbrain: the superior central nucleus and dorsal raphe nucleus. Other raphe nuclei are also found in the medulla and pontine reticular formations. The common ele-ment between all raphe nuclei is that they form a seam, or ridge, along the medial aspect of the brain stem, making up the most medial aspect of the reticular

ridge, along the medial aspect of the brain stem, making up the most medial aspect of the reticular formation, a phylogenetically ancient part of the brain. The primary purpose of all raphe nuclei appears to be to release the neurotransmit-ter serotonin to other areas of the brain, including areas responsible for social information pro-cessing. They are also thought to play a funda-mental role in regulating circadian rhythm (For a discussion of the role of serotonin in autism, please see the

in regulating circadian rhythm (For a discussion of the role of serotonin in autism, please see the serotonin section of the encyclope-dia. For a more general discussion of the mid-brain, please see the midbrain section of the encyclopedia.)

Milestone  Synonyms Developmental milestones; Indicator; Marker  Definition Skills that are indicative of development. Exam-ples are taking a first step, smiling for the first time, and waving “bye-bye.” Children reach mile-stones in how they play, speak, learn, behave, and move (Center for Disease Control [CDC] 2010). There is a standard pattern and age range for how and when most children achieve these milestones. Children with autism are typically delayed in their acquisition of communicative

these milestones. Children with autism are typically delayed in their acquisition of communicative and social develop-mental milestones and also in their development of skills such as using eating utensils, drawing, dancing, rhythm, and music (Jones and Prior 1985).

Milieu Teaching  Definition Milieu teaching (Hart and Risley 1975) includes a group of procedures, derived from the behaviorist tradition, that were developed to teach language skills to children by embedding learning opportu-nities within the child’s everyday (i.e., natural) environment and by taking advantage of a child’s interest in and motivation to gain access to mate-rials. According to Goldstein (2002), incidental teaching represents the key component of milieu teaching. Incidental

Goldstein (2002), incidental teaching represents the key component of milieu teaching. Incidental teaching episodes begin with spontaneous child-initiated communication acts as the child attempts to gain access to preferred mate-rials, objects, or events within the natural envi-ronment. These child communication acts serve the pragmatic function of requesting (or manding). In addition to incidental teaching, two other well-known milieu language teaching procedures (described below) are mand

teaching, two other well-known milieu language teaching procedures (described below) are mand model and time delay. Because they are embedded in the natural envi-ronment, milieu language teaching procedures are often taught to parents who can then incorporate milieu language procedures into the child’s every-day routines and activities.

There are now many variants of the milieu teaching approach including prelinguistic milieu teaching, which focuses on teaching preverbal chil-dren to use nonverbal communication skills such as gestures, eye gaze, and vocalization; and enhanced milieu teaching, a more comprehensive approach to naturalistic language intervention, that includes environmental arrangement, responsive interaction techniques, and milieu teaching procedures.

According to Gilbert (2008), the following components are characteristic of milieu teaching:

1. Training in everyday environments 2. Arranging the environment to promote sponta-neous requesting by the child 3. Offering preferred toys and activities to rein-force child communication 4. Building predictable turn-taking routines 5. Use of time delay (i.e., expectant waiting) to encourage communication 6. Waiting for the child to initiate by gesturing or indicating interest in an object or activity
7. Providing models of more advanced commu-nication following a child initiation

7. Providing models of more advanced commu-nication following a child initiation
8. Rewarding communication with access to the desired object/activity rather than unrelated reinforcers

Historical Background Classic behavioral approaches to early language intervention made use of imitation procedures and tangible rewards for imitation. These methods have several drawbacks including communication that is passive or prompt depen-dent or which does not generalize to contexts outside of those in which the communicative behavior was taught. In addition, children who have not yet acquired the understanding that communicative bids can be used to affect the behavior of other people

the understanding that communicative bids can be used to affect the behavior of other people (i.e., who do not understand the instrumental function of com-munication as a means to a desired end) may have difficulty acquiring basic communication skills. In response to these drawbacks of discrete trial interventions, behavioral interventionists began to develop methods that were based upon the strengths of behavioral programming (e.g., predictable structure, use of task analysis, attention to

of behavioral programming (e.g., predictable structure, use of task analysis, attention to antecedents and consequences of behavior). These methods addressed the need to establish basic communicative behavior and to generalize communicative acts beyond the training setting. These developments also included the use of the natural environment as the context for learning, planning of contingen-cies carefully engineered to elicit spontaneous communicative acts that could be shaped toward more

carefully engineered to elicit spontaneous communicative acts that could be shaped toward more conventional and functional lan-guage, and the inclusion of parents as interven-tion agents.

Rationale or Underlying Theory The rationale that led to the emergence of milieu teaching approaches is that it is important for children to learn to communicate within the everyday context within which their communica-tion behaviors will be used. In addition, by arrang-ing the environment to provide objects, actions, and events in which children have an interest, the child will be motivated to direct a request for access to the desired object or activity to the communicative partner who can

direct a request for access to the desired object or activity to the communicative partner who can then model more advanced and conventional forms of communication.

Goals and Objectives The broad goal of milieu teaching is to increase the child’s use of specific requesting behaviors. Related goals include teaching related grammat-ical forms and vocabulary. According to Han-cock and Kaiser (2007), milieu teaching emphasizes reciprocity, turn taking, following the child’s lead, meaningful and contingent feedback for child communication, and expan-sion of child utterances to model more advanced forms.

Treatment Participants Responsive education/prelinguistic milieu teach-ing is designed for children at developmental levels between 12 and 18 months who have not yet become clear and frequent communicators. If children use more than 10 words or signs, or understand more than 75 words, then they should be enrolled in an intervention that places more of an emphasis on expressive vocabulary. Children for whom RE/PMT is appropriate should produce less than two acts of intentional communication per

for whom RE/PMT is appropriate should produce less than two acts of intentional communication per minute during play interactions with a caregiver. Children enrolled in enhanced milieu teaching should be verbally imitative, have at least 10 expressive vocabulary words, and should have a mean utterance length of 1.0–3.5 words.

Treatment Procedures Incidental teaching, time delay, and mand model-ing have been identified as major components of the milieu language teaching procedure.

In the mand-model procedure, the teacher, cli-nician, or parent arranges the environment to include objects/actions/events that the child is motivated to request access to. When the child approaches the materials, the adult provides a mand, asking: “What do you want?” If this ques-tion elicits the child’s production of a word or word approximation, the adult expands by provid-ing a semantic or grammatically more advanced version of the child’s production. If the child does not respond to the

grammatically more advanced version of the child’s production. If the child does not respond to the mand, the clinician provides a model: Say, I want truck. If the child does not respond, the teacher provides one more model and provides the child with access to the desired material.

The time delay procedure is a prompt fading strategy used to encourage children to use vocab-ulary that they do know, but may not frequently produce spontaneously. Time delay is similar to “fill in the blank.” Again, desired materials are available to the child. The teacher holds an item (e.g., a puzzle piece of a cow) and says, “I want the ______.”

Incidental teaching is a technique in which the adult uses child initiations during ongoing activi-ties to provide language input. Incidental teaching requires that the environment be arranged to include materials and activities that are highly motivating to the child such that the child will initiate to gain access to the materials. Incidental teaching is child-directed in that the adult follows the child’s lead and allows the child’s current focus of interest to guide the teaching episodes.

Efficacy Information According to the American Speech-Language-Hearing Association, there is a large body of empirical support for more contemporary behav-ioral approaches using naturalistic teaching methods that demonstrate efficacy for teaching not only speech and language but also communication. The following specific interven-tion strategies have been found to promote initia-tion and generalization: arrange the environment to provide opportunities for communicating with preferred materials,

arrange the environment to provide opportunities for communicating with preferred materials, encourage child initiations and follow the child’s attentional focus and inter-est, intersperse preferred and nonpreferred activi-ties, use embedded instruction in the natural environment, offer choices and encourage choice making, use natural reinforcers that follow what the child is trying to communicate, and use of time delay.

There are only a few studies, all using single-subject design, that have compared traditional discrete trial with naturalistic behavioral approaches. These studies have reported that nat-uralistic approaches are more effective at leading to generalization of language gains to natural contexts.

Outcome Measurement Outcome measures used in studies of milieu teaching will typically consist of measures of the rate or frequency of child nonverbal or verbal communication acts, measures of utterance length (mean length of utterance in words), mea-sures of use of grammatical morphemes (mean length of utterance in morphemes), and vocabu-lary use (lexical diversity, number of different words). Other measures may include parent use of targeted strategies or number of milieu teach-ing episodes.

Qualifications of Treatment Providers Individuals who teach parents must have skills in the delivery of milieu teaching procedures but must also have skills in interacting with parents in ways that support parent learning. Profes-sionals must have skills in providing coaching and feedback to parents and must be able to model desired parent behaviors within the con-text of a parent-child interaction without disrupting the interaction or overwhelming the parent.

Military Families with Children with Autism  Definition Military families with children with autism are a subgroup of families with children with autism who have at least one member serving in the Armed Forces. The service members of military families may enlist with any one of several branches of the Armed Forces including the Air Force, Army, Coast Guard (during national emer-gencies or wartime situations), Marine Corps, and Navy (Blaisure et al. 2012). The service members of military

wartime situations), Marine Corps, and Navy (Blaisure et al. 2012). The service members of military families may be active duty, reserve, or National Guard members. Active duty members are full-time service men and women, which also requires their families to be full-time military families. Reserve and National Guard members are part-time forces, trained and ready if they are called upon to serve under command of the Pres-ident or state governor, respectively (Blaisure et al. 2012). Since

serve under command of the Pres-ident or state governor, respectively (Blaisure et al. 2012). Since Reservists and National Guard members are part-time, their families are also part-time military families, frequently living in civilian communities with limited access to military supports if their service member is called for duty.

Since military families with children with autism are members of both the autism commu-nity and the military community, they have shared characteristics with both groups. For example, as members of the autism community, military families with children with autism share the expe-rience of having a child with autism, service avail-ability issues, and additional stress in the family. Children with autism may have a different con-stellation of symptoms from two categories – social interaction and

autism may have a different con-stellation of symptoms from two categories – social interaction and communication and restricted and/or repetitive behavior (APA 2013). These characteristics may include difficulty with social interaction, insistence on sameness, restricted interests, and limited and/or delayed communication (Barbaro and Dissanayake 2009), requiring intervention from several different pro-fessionals. Parents of children with autism have long reported difficulty finding the services

pro-fessionals. Parents of children with autism have long reported difficulty finding the services their child with autism needs to improve a variety of impairments (Kohler 1999). As a result of chal-lenging behavior from the child with autism, difficulty finding services, and other stressors, parents of children with autism have reported higher levels of stress than parents of neurotypical (e.g., typically developing) children or children with other developmental disabilities (Hayes and Watson

typically developing) children or children with other developmental disabilities (Hayes and Watson 2013).

As members of the military community, military families with children with autism also share a common set a characteristics with military families, distinguishing them from civilian families. Segal (1986) described these characteristics as family separations (e.g., deployment), frequent relocations to military installations around the United States or overseas, and dangerous work environments. Some civilian families may experience these events on occasion; however, only military families

Some civilian families may experience these events on occasion; however, only military families expe-rience all three characteristics on a routine basis. For example, a parent who works for an interna-tional company may travel overseas for meetings, resulting in temporary separation, but would likely not be in a dangerous environment while doing so. In contrast, military families may be separated from their service member multiple times per year for training or combat while their service member

from their service member multiple times per year for training or combat while their service member is at risk of injury.

This entry is divided into three sections. First, a brief history of the military and views of military families is provided for context of the culture surrounding military families with children with autism. Second, current knowledge related to mil-itary families with children with autism is sum-marized with comparisons to civilian families with children with autism and other military fam-ilies. Finally, future directions for military fami-lies with children with autism are presented.

Historical Background Prior to the start of an all-volunteer force in the early 1970s, most soldiers were not married and had not yet started families. In fact, an old adage in military communities was “if the military wanted you to have a wife, they would have issued you one,” implying the military’s sole focus on the service member. However, with the start of an all-volunteer force in 1973, the demographics of the Armed Forced began to change. Service mem-bers were now more likely to have a

demographics of the Armed Forced began to change. Service mem-bers were now more likely to have a spouse and children than they were before 1973. In 2015, over half (50.5%) of all service members were married and nearly half (41%) had at least one child, the majority of children between the ages of 0 and 5 years (Department of Defense [DoD] 2015). Military family members, also called mil-itary dependents, outnumber the service members by over 600,000 (DoD 2015). Military depen-dents were

dependents, outnumber the service members by over 600,000 (DoD 2015). Military depen-dents were becoming a part of the military com-munity the DoD could not overlook.

With the increase in service members with families, the DoD began to recognize the impor-tance of military families for military operations, satisfaction with the military way of life, and, ultimately, retention of the service member in the Armed Forces. In 1985, the Military Family Act was passed to establish a government commit-ment to helping military families for the first time. The military started to view mission readi-ness (i.e., the ability of the service member to perform duties), as

started to view mission readi-ness (i.e., the ability of the service member to perform duties), as related to family readiness (i.e., the ability of the family to successfully nav-igate the demands of military life) (National Mil-itary Families Association [NMFA] 2006). The family members of service members needed to be taken care of if the service member was to focus on the mission and have support from the family to remain in the military. In response to shifting demographics and recognition

from the family to remain in the military. In response to shifting demographics and recognition of family readiness, the military created informal and for-mal support systems for families (Albano 1993). For example, each service has a family assistance center to help military families with different mil-itary lifestyle-related concerns such as relocation preparation and insurance.

Although military families are generally viewed as resilient to stressors and adaptable in new or difficult circumstances (Blaisure et al. 2012), the recent wars, military operations, and deployments have taken a toll on military families. Since 2011, there have been several missions in the Middle East (e.g., Operation Enduring Freedom) requiring over two million service members from active duty, reserve, and National Guard components to serve overseas. In a recent survey, Blue Star Families

reserve, and National Guard components to serve overseas. In a recent survey, Blue Star Families (2016) found 72% of military spouses reported the cur-rent climate of military operations is too stressful. Military families have endured a long period of mobilization, testing their resilience, especially those families with additional stressors not related to the military lifestyle.

Despite over 1.7 million children considered mili-tary dependents (DoD 2015), research on children in military families, particularly those with autism, is limited. Currently, there are private organization reports and surveys (e.g., OAR 2010; Blue Star Families 2013), government reports (e.g., Ohio State University Project Team 2011), and a few peer-reviewed articles (e.g., Davis and Finke 2015; Freuler and Baranek 2016) to aid profes-sionals and military families in supporting military

2015; Freuler and Baranek 2016) to aid profes-sionals and military families in supporting military children with ASD. Most of the research for mili-tary families with children with autism has been related to deployments and relocations, two of the main characteristics of military families.

A deployment refers to a time when the service member is relocated for a period of time (e.g., a few weeks or multiple months) for a military pur-pose such as wartime needs or training exercises. When a service member deploys, the family must to adapt to their absence. Members take on new roles and responsibilities once performed by the service member, frequently resulting in changes to the fam-ily routine and an increase in family stress as the family learns to adjust (Drummet et al. 2003).

routine and an increase in family stress as the family learns to adjust (Drummet et al. 2003). This may be particularly true for military families with children with autism, given the amount of care often required for a child with autism.

Civilian families with children with autism have reported the numerous responsibilities required to care for a child with autism (Myers et al. 2009), even without the added challenge of losing a parent for a few weeks to a few months. Interviews with military spouses with children with autism confirmed they experience an increase in emotional stress during deployments (Davis and Finke 2015). Many spouses also reported feeling very isolated in their community as many are away from friends and

spouses also reported feeling very isolated in their community as many are away from friends and family and without the help of their deployed spouse (Davis and Finke 2015; Freuler and Baranek 2016).

Children may have difficulty adjusting to the absence of their service member parent. A systematic review by Alfano et al. (2016) found young children express greater externaliz-ing behavior (e.g., temper tantrums, defiance) when they have a deployed parent. Studies with older children reported mixed evidence of deploy-ment effects, but some outcomes such as mental health diagnoses, stress, and mood or behavior disorders were more common when a parent was deployed (Alfano et al. 2016). Military

or behavior disorders were more common when a parent was deployed (Alfano et al. 2016). Military spouses have reported similar emotional and behavioral dif-ferences in their children with autism when their service member is deployed (Davis and Finke 2015; Freuler and Baranek 2016). Some spouses have commented on their child’s emo-tional withdrawal during deployments and the difficulty the child has in understanding why their parent is not at home (Davis and Finke 2015). Other spouses have

has in understanding why their parent is not at home (Davis and Finke 2015). Other spouses have noticed an increase in frequency and severity of autism symptoms dur-ing deployments (Davis and Finke 2015).

Relocation When the military needs a service member at another installation, they issue a “permanent change of station” (PCS) and require the family to relocate to a new area. Finding medical and therapeutic care after a relocation is challenging for military families with a child with autism. Each time the family relocates, they must find an assortment of interventions to address the wide range of symptoms associated with autism. For example, parents of children with autism have reported

of symptoms associated with autism. For example, parents of children with autism have reported working with an average of approxi-mately seven different professionals over six months (Kohler 1999).

Military families with children with autism have reported delays in obtaining therapeutic services, limited therapeutic or medical providers in their area, lack of service continuity, and lack of therapeutic service quality (Davis and Finke 2015; Davis et al. 2016; Freuler and Baranek 2016). Specifically, the majority of 189 military spouses in a survey reported only some access to interventions their child with ASD required, delays in access to interventions, limited access to assistive

their child with ASD required, delays in access to interventions, limited access to assistive technologies when they were needed, difficulties finding physicians near their homes, and inadequate continuity of inter-ventions across locations (Davis et al. 2016). Civilian families with children with autism have also reported limited availability and accessibility of therapeutic services for their child with autism and dissatisfaction with the quality of some of those services as well (Kohler 1999).

with autism and dissatisfaction with the quality of some of those services as well (Kohler 1999). However, in most circumstances, military families are required to relocate more often than civilian fam-ilies, compounding service availability issues.

Along with finding medical and therapeutic services, military families must find and enroll their child in a new school. Military children switch schools an average of six to nine times between kindergarten and 12th grade, causing disruption in educational programming (Ohio State University Project Team 2011). Changing schools requires transferring student files, com-pleting paperwork, and learning about the receiv-ing school’s requirements. Interviews with school liaisons for the Marine Corps

about the receiv-ing school’s requirements. Interviews with school liaisons for the Marine Corps indicated school transitions as the most common and most severe problem for military families related to education (Aronson and Perkins 2013).

Given the number of school professionals children with autism may work with on a weekly basis, military families with children with autism may have even greater challenges related to school transitions after relocations. Military fam-ilies with children with autism have commented on the lack of therapeutic service continuity between schools as it relates to the implementa-tion of a child’s IEP (Davis and Finke 2015; Davis et al. 2016; Freuler and Baranek 2016). Many also felt dissatisfied with

and Finke 2015; Davis et al. 2016; Freuler and Baranek 2016). Many also felt dissatisfied with the quality of the services provided by the school, some believing their options for legal recourse were limited due to their transitory lifestyle (Davis and Finke 2015). Similarly, civilian families with children with ASD have reported worries about transitioning between schools (Parsons et al. 2009), without the added stress of multiple required relocations during the child’s school career.

Frequent relocation may increase a child’s risk of emotional and/or behavioral distress. Data from a national health interview survey indicated increased family mobility as a risk to children’s emotional and behavioral health and education, even after controlling for other variables (Simpson and Fowler 1994). Evidence with mili-tary children and relocation effects are mixed, with some studies supporting positive outcomes and others finding negative outcomes for the mil-itary children (Milburn

positive outcomes and others finding negative outcomes for the mil-itary children (Milburn and Lightfoot 2013).

The negative impacts of relocation on military children with autism may be more pronounced given common symptoms of autism such as anxiety comorbidity, resistance to change, difficulty with social interaction, and challenging behavior (Barbaro and Dissanayake 2009). Military spouses reported their children with autism demonstrated an increase in challenging behaviors, such as more aggression and temper tantrums, after relocation (Davis and Finke 2015; Freuler and Baranek 2016). Military spouses

tantrums, after relocation (Davis and Finke 2015; Freuler and Baranek 2016). Military spouses also stated their child with autism was more anxious after relocation, particularly until the family reestablishes a routine (Davis and Finke 2015). Some military spouses commented on the difficulty their child with autism had establishing new friend support in the new school and community (Davis and Finke 2015).

Military families with children with autism may be even more at risk for stress related prob-lems. Current research has indicated military spouses encounter greater amounts of stress fol-lowing a relocation than when the family is settled (Davis and Finke 2015). Similarly, civilian par-ents of children with autism have reported greater amounts of stress than parents of neurotypical children or children with other developmental disorders (Hayes and Watson 2013). Therefore, military families

children with other developmental disorders (Hayes and Watson 2013). Therefore, military families with children with autism are likely starting at a higher baseline of stress than other military families and are likely a higher risk for stress and problems related to stress.

Military Supports for Families with Children with Special Needs Recently, the DoD has sought to reduce some of the challenges military families with children, including those with special needs, encounter as a result of being in the military. For example, as a way to alleviate some of the challenges related to school transitioning, the DoD encouraged states to sign the MICCC (2011). The MICCC (2011) is an agreement signed by all 50 states to enhance educational opportunity for military

(2011) is an agreement signed by all 50 states to enhance educational opportunity for military children by reducing barriers to school enrollment, placement and eligibility for classes, and graduation. Another school-based program is the school liai-son programs operated by each service to help military families solve issues related to the mili-tary and schools (DODEA 2014).

The DoD has updated their websites such as Military One Source to be more user-friendly and have added sections containing information specific to mili-tary families with children with special needs. They have also established a program called the Exceptional Family Members Program (EFMP), independently operated by each military service to help ensure families are relocated to an instal-lation near resources required to meet the family member’s special needs (OAR 2010). EFMP offices may also

near resources required to meet the family member’s special needs (OAR 2010). EFMP offices may also provide other supports for the families; however, these additional supports are not required and vary in scope and quantity by branch and installation (OAR 2010). The DoD created the Extended Care Health Option (ECHO) program to help provide additional finan-cial support for the medical needs of families with members with special needs; however, families must enroll after each move (OAR 2010).

While these supports by the DoD are helpful, they do not address all of the needs for autism and military issues. Further, military families commented the problems did not meet their expectations and are inconsistent (Blue Star Families 2013). Additional research needs to be completed to determine which supports are required and how they should be implemented.

Future Directions Military families with children with autism report several challenges they encounter as a result of having a child with autism and being a part of the military lifestyle. The challenges reported are sim-ilar to those faced by other military families and other families with children with autism; however, it is the dual membership in both communities susceptible to difficulties that exacerbates the challenges military families with children with autism face. Given the lack of

that exacerbates the challenges military families with children with autism face. Given the lack of peer-reviewed research in this area, policymakers, professionals, military personnel, and researchers have little information to guide them when developing pol-icies and programs to support these families. Additional research should be completed to help fully address the challenges military families with children with autism experience. Further, it is possible supports developed for military

with children with autism experience. Further, it is possible supports developed for military families with children with autism may be useful for civil-ian families as there are parallels between the two populations. Examples of future research direc-tions include the following:

1. Experiences of male spouses with children with autism 2. Experiences of Reservist and National Guard families with children with autism
3. Concomitant family issues (e.g., a parent with post-traumatic stress disorder) and a child with autism
4. Programs and supports helpful to military fam-ilies with children with autism
5. Medical and therapeutic professionals’ knowl-edge of military families and their culture

Miller Assessment for Preschoolers (MAP)  Description The Miller Assessment for Preschoolers (MAP) is designed to evaluate the developmental status of children aged 2 years 9 months to 5 years 8 months across a broad range of areas including behav-ioral, motor, and cognitive functioning. The MAP test items are categorized into five perfor-mance indices. The foundations and coordination indices assess sensory motor abilities involving basic gross and fine motor tasks, awareness of sensations, and

sensory motor abilities involving basic gross and fine motor tasks, awareness of sensations, and oral motor skills. The verbal and nonverbal indices assess cognitive skills required for language development, problem solving, memory, and perception. And the complex task performance index measures sensorimotor abili-ties in conjunction with cognitive abilities that require the interpretation of visual-spatial infor-mation. For children with severe developmental problems, the MAP can be used to

infor-mation. For children with severe developmental problems, the MAP can be used to provide a developmental overview and to clarify strengths and weaknesses. The MAP may be administered and scored by a wide range of professionals including psychologists, occupational therapists, physical therapists, speech pathologists, nurses, or special education teachers. Scores are obtained through direct testing, and subjective aspects of performance are included in the behavior during testing checklist

and subjective aspects of performance are included in the behavior during testing checklist as well as in supplemental obser-vations that do not contribute to a child’s total score. Total scores and performance index scores are expressed in percentile ranks. Item percentiles can be used to interpret the performance of at-risk or borderline cases.

Historical Background The Miller Assessment for Preschooler was the culmination of 10 years of research involving 4,000 children and 800 test items. Each item was field tested with small samples of pre-schoolers, and 530 items were chosen for the MAP tryout edition. It is from this sample that the 27 items that constitute the MAP were selected. The MAP was first published in 1982 and then revised in 1988. The theoretical infor-mation that contributed to the development of the MAP comes from a

in 1988. The theoretical infor-mation that contributed to the development of the MAP comes from a broad range of literature in child development, education, psychology, lan-guage development, physical and occupational therapy, and medicine.

Psychometric Data The MAP was standardized on a sample of 1,200 preschoolers, representing all nine continental geographic regions of the United States. Approx-imately, equal numbers of children in each region were tested, and the sample was stratified by age, sex, race, size of residential community, and socioeconomic factors.
 Reliability Reliability of the MAP was determined using interrater agreement, test-retest reliability, and internal consistency of the total test.

Interrater reliability was calculated on 40 chil-dren. Correlation coefficients were calculated on a sample of 40 children who participated in the interrater reliability study. Scores ranged from .84 to .99 for the total test and the performance indices and are suggestive of a high level of interrater agreement.

Test-retest reliability was calculated on a group of 81 children randomly selected from the stan-dardization sample. The two tests were adminis-tered between 1 and 4 weeks after initial testing. Retest stability is reported in percentages and ranged from 72% to 94% for the total score and the five performance indices.

Internal reliability was calculated from the item raw scores for the total sample using split half method and the average item to test correction. Both methods produced internal consistency values around .80.
 Validity Three methods were used to support the validity of the MAP: content, criterion-related, and con-struct validity.

Content validity of the items was established by experts from a number of specialty areas who were asked to rate the content validity within their fields of expertise. A content specifications by item table supports the content validity of the test. Criterion-related validity was established using concurrent and predictive validity. MAP scores were correlated with one of the four standardized instruments including the Wechsler Preschool and Primary Scale of Intelligence (WPPSI), the Illi-nois

including the Wechsler Preschool and Primary Scale of Intelligence (WPPSI), the Illi-nois Test of Psycholinguistic Abilities (ITPA), the Southern California Sensory Integration Tests (SCSIT), and the Denver Developmental Screen-ing Test (DDST). Correlations of the complex task index and the WPPSI verbal and performance IQ approached statistical significance. Correlations were significant for the ITPA and the MAP total score, the coordination index, and the nonverbal index. One significant

the ITPA and the MAP total score, the coordination index, and the nonverbal index. One significant correlation was found between the MAP foundation index and the SCSIT score. In comparison to the DDST, 72% of the sample was similarly grouped by both instruments; however, the MAP identified 24% more children in the at-risk categories.

Evidence of predictive validity was obtained from a study of children tested 4 years after initial testing with the MAP. Results suggest that per-formance obtained on the MAP in the preschool years is predictive of intelligence, motor skill acquisition, and school achievement 4 years later.

Clinical Uses The MAP may be administered and scored by a wide range of professionals including psycholo-gists, occupational therapists, physical therapists, speech pathologists, nurses, or special education teachers. The purpose of the MAP is to identify developmentally delayed preschool children who need further evaluation and to provide a compre-hensive structure clinical framework for identify-ing a child’s strengths and weaknesses. The intent is to identify difficulties in children in the

a child’s strengths and weaknesses. The intent is to identify difficulties in children in the pre-school age group (that typically go undiagnosed) that cause them to fall behind their peers in one or more areas of development. The MAP can also be used with children who have more severe devel-opmental problems to provide a developmental overview or strengths and weaknesses when com-prehensive standardized evaluations cannot be administered. The MAP has been translated into Hebrew and Japanese.

evaluations cannot be administered. The MAP has been translated into Hebrew and Japanese. Studies reflect characterization of clini-cal populations as well as use as an outcome measure in treatment effectiveness research.

Miller Function and Participation Scales  Synonyms M-FUN  Description The Miller Function and Participation Scales (M-FUN) is a developmental assessment for chil-dren ages 2.6–7.11, designed to assist therapists in determining how a child’s motor capacities affect participation in home and school environments. Based on the World Health Organization’s Inter-national Classification of Function, Disability and Health (ICF; WHO 2001), the M-FUN addresses the mandate of occupational therapists to

and Health (ICF; WHO 2001), the M-FUN addresses the mandate of occupational therapists to evaluate the whole child and determine how a child’s motor problems might be affecting his or her functional abilities. The scales consist of a performance com-ponent, which includes workbook activities to tap visual motor abilities and play-based activities that tap gross and fine motor abilities. The perfor-mance component is comprised of three sub-scales: gross motor, fine motor, and visual motor.

In addition, there is a participation component, which consists of three observation checklists that rate a child’s participation at home, school, and during the testing session. Among the abilities examined in the M-FUN observation checklists are mobility, postural control, sensory discrimina-tion and modulation, social skills and communi-cation, object manipulation, and participation in daily routines.

Several indicators of a child’s performance can be derived from the M-FUN including standard scores, percentile ranks, and age equivalents for each subscale. Criterion-referenced scores are derived for home observation, classroom observa-tion, and test observation checklists. The scales can be used to determine if a child has a develop-mental delay, or for children older than 7.11 years who have known motor delays, the test can be used to measure progress or to plan treatment. Unique to the

known motor delays, the test can be used to measure progress or to plan treatment. Unique to the M-FUN is the Neurological Foun-dations Profile, which facilitates the identification of underlying impairments affecting the child’s ability to perform tasks and serves as a guide for treatment planning. Additionally, the M-FUN provides information about growth in the child’s visual motor, fine motor, and gross motor abilities. Following intervention, the child can be retested using the M-FUN, and

and gross motor abilities. Following intervention, the child can be retested using the M-FUN, and progress scored can be derived that reflects the acquisition of new skills even if he or she is not progressing at the same rate as age-ability peers.

Historical Background The M-Fun was developed out of the need for a functional motor evaluation of skills and abilities that underlie participation in school. Based on the model from the ICF (WHO 2001) and OT Practice Framework (AOTA 2002), the M-FUN employs a competency model rather than a deficit model to assess children.

Psychometric Data Normative data was collected from over 400 chil-dren from four geographic regions of the United States (West, South, North Central, and North-east). The standardization sample closely matches the demographic characteristics of chil-dren ages 2.6–7.11 by sex, race/ethnicity, and parent education level reported the 2002 United States census. The standardization sample also included children in each age group (5–7% of total) who were diagnosed with a motor delay or impairment.

The reliability of the M-FUN was examined using test-retest reliability, internal consistency, and interrater reliability. Retest of 27 children from the standardization sample was conducted with 0–21 days of initial testing. Moderately high reliability was found across time for all ages with scores ranging from .77 to .82. Internal consis-tency reliability supports the homogeneity of the items in the scale with the average reliability coefficients ranging from .85 or the visual motor subscale

in the scale with the average reliability coefficients ranging from .85 or the visual motor subscale to .90 for the fine motor subscale and .92 for the gross motor subscale. Reliability coefficients for the clinical group on each sub-scale were similar to those reported for the nor-mative sample. In addition, reliability coefficients for all three observation checklists were excellent, ranging from .87 to .98. Interrater reliability was computed for 29 children with the average decision agreement

.87 to .98. Interrater reliability was computed for 29 children with the average decision agreement 93–96% for each subscale.

Validity data was collected for test content, internal structure, relationship to other variables, and diagnostic accuracy. Content validity was based on ICF, the OT Practice Framework, a review of the literature, and focus group experts. The internal structure was analyzed by examining patterns of scaled score intercorrelations. Coefficients were between .47 and .55 suggesting that each subscale mea-sures a different motor construct/ability. Concur-rently validity was examined in order to

mea-sures a different motor construct/ability. Concur-rently validity was examined in order to determine the M-FUN’s relatedness with other instruments designed to measure similar constructs. One study compared scores on the Miller Assessment for Preschoolers (MAP) to scores on the M-FUN in a sample of 15 children. Correlations ranged from .47 to .83 suggesting that the two tests supply complementary information about a child’s abili-ties. A study of discriminant validity revealed that the

information about a child’s abili-ties. A study of discriminant validity revealed that the M-FUN subscales discriminate between chil-dren with clinically diagnosed delays and those who are typically developing at a meaningful and statistically significant level. Classification analysis to assess the clinical utility of the M-FUN produced moderate to excellent sensitiv-ity and specificity. For cutoff scores of 1 standard deviation below the mean, the sensitivity was between .69 and .89, and the

scores of 1 standard deviation below the mean, the sensitivity was between .69 and .89, and the specificity was between .80 and 1.00.

Clinical Uses The M-FUN may be administered by a variety of qualified professional including occupational therapists, physical therapists, special education or adaptive physical education specialists, and early childhood interventionists who are inter-ested in determining how a child’s motor abilities affect their participation in home and school. Examiners should have experience in test admin-istration, scoring, and interpretation, as well as knowledge of sensory processing and motor

admin-istration, scoring, and interpretation, as well as knowledge of sensory processing and motor development in preschool and school-aged children.

The M-FUN can be used for a variety of purposes: *   To determine a child’s eligibility for interven-tion services to address gross motor, fine motor, and visual motor delays
*   To document delays in motor development (gross motor, fine motor, visual motor)
*   To determine motor readiness/preparedness for school – strengths and needs in the area of motor abilities that may impact on the child’s ability to participate fully in school and home routines

*   To make recommendations for optimizing the child’s functioning at school and home (least restrictive environment)
*   To assist in the development of treatment plan-ning through use of the neurological founda-tions profile
*   To identify underlying neuromotor deficits affecting functional abilities – to identify fine motor, visual motor, and gross motor skill areas that might affect a child’s school success

*   To measure progress over time following a course of intervention  Mindblindness  Definition “Mindblindness” is a term coined by autism researcher Simon Baron-Cohen (1990). It also is the title of the essay containing work from his doctoral dissertation (Baron-Cohen 1997). In that essay, Baron-Cohen theorized that humans have evolved to be able to “mindread” or to effortlessly, automatically, and unconsciously assess the behavior of others. This is critical because mindreading forms the

and unconsciously assess the behavior of others. This is critical because mindreading forms the basis of the ability to successfully engage in social interactions requiring the minute-by-minute interpretation and prediction of the behavior of one’s interaction partners. Baron-Cohen goes on to propose that persons with autism have a selective impairment in mindreading.

The concept of mindblindness is rooted in the fields of both evolutionary biology and cognitive science. It is Baron-Cohen’s contention that natu-ral selection favored species and individuals from those species with greater social intelligence which included mindreading abilities. Mindreading abilities enabled primates to cohesively bond together in organized social hierarchies to achieve common goals. Those who were more adept at playing social chess through excellent mindreading skills

goals. Those who were more adept at playing social chess through excellent mindreading skills (forward planning, plotting, counterplotting, strategic problem solving to achieve one’s goals) ended up at the top of such social hierarchies. Given the importance of mindreading abilities to survival, in this view, such abilities are believed to be a discrete component of cognition or a “module.”

The human mindreading system is thought to have four separate components. The first – the intentionality detector (ID) – is a perceptual device that interprets approach and avoidance in terms of goals and desires. For example, it enables one to interpret the motion of a mouse toward cheese as reflecting the mouse’s desire to eat. ID is the first mechanism human infants use. It can be cued by all forms of sensory input (i.e., seeing or hearing something).

The second mechanism is the eye direction detector (EDD), which works through the visual system and computes whether eye-like stimuli are directed toward or away from something, including whether the eyes are directed at the organism itself or toward another organism. The third component – the shared attention mechanism (SAM) – builds triadic rep-resentations which specify relations among the agent, the self, and another object or agent. For example, the SAM would compute that Johnny and I are

the self, and another object or agent. For example, the SAM would compute that Johnny and I are both looking at the cheese (or mom). Finally, the theory of mind mechanism (TOMM) is a system for inferring the full range of mental states from behavior or for employing a “theory of mind.” Theory of mind is a shorthand term for the capacity to attribute mental states to oneself and others and to interpret behavior in terms of mental states.

Mindfulness Therapy for Individuals with Autism Spectrum Disorder  Synonyms Mindfulness-based therapy/intervention  Definition Mindfulness can be defined as attending to the present moment emotions and thoughts without judgment (Kabat-Zinn et al. 1985). Mindfulness therapies teach clients skills, which have their ori-gins in Buddhist traditions, related to enhanced present-moment awareness and acceptance of thoughts, emotions, and experiences using mind-fulness meditation (Baer 2003).

and acceptance of thoughts, emotions, and experiences using mind-fulness meditation (Baer 2003). Mindfulness has been taught via standardized therapies entirely focused on mindfulness, such as Mindfulness-Based Stress Reduction (MBSR; Kabat-Zinn et al. 1985), as well as integrated into other established therapies including cognitive-behavior therapy (CBT), such as Mindfulness-Based Cogni-tive Therapy (MBCT; Segal et al. 2002) and Dia-lectical Behavior Therapy (DBT; Linehan 1993).

Mindfulness therapies have been used with children, adolescents, and adults with ASD. Sev-eral programs targeting emotion regulation impairment employed mindfulness-based tech-niques along with cognitive behavioral (CBT) and other behavioral strategies. A study examin-ing MBSR without adaptation for adults with ASD found increased quality of life, positive outlook, and mindfulness (Beck et al. 2019). Studies have also utilized adaptations of mindfulness therapies for individuals with ASD, such

Studies have also utilized adaptations of mindfulness therapies for individuals with ASD, such as short-ening the duration of mindfulness meditations and sessions, simplifying instructions, and adapting visual supports. Adapted MBCT has been shown to reduce symptoms of depression, anxiety, and rumination among adults with ASD (Kiep et al. 2015; Spek et al. 2013) and was observed to be equally effective as CBT for depression and anx-iety (Sizoo and Kuiper 2017).

An individual mindfulness therapy was found to be well-accepted and effective for young adults with ASD who had difficulties with emotion regulation (Conner and White 2018). Lastly, an adaptation of a DBT group targeting emotion regulation and social communication difficulties in adults with ASD found decreased use of suppression and increased reappraisal (Hartmann et al. 2019).

Therapies using mindfulness have also been shown to be effective with children and adoles-cents with ASD (see Cachia et al. 2016, for review). An emotion regulation-focused adapta-tion of the Secret Agent Society (Secret Agent Society: Operation Regulation (SAS:OR)) for children with ASD includes mindfulness practices and CBT. A randomized controlled trial compar-ing SAS:OR to a waitlist control group found improved emotion regulation, decreased problem behaviors (Weiss et al. 2018). Several

group found improved emotion regulation, decreased problem behaviors (Weiss et al. 2018). Several small stud-ies by Singh et al. (2011a, b) taught a mindfulness practice that was associated with decreased levels of aggression in adolescents with ASD.

The Inten-sive Outpatient Program for Emotion Regulation Treatment is an intensive outpatient program for children with ASD and co-occurring Intellectual Disability which includes mindfulness, CBT, and other behavioral techniques (Shaffer et al. 2019). The intensive outpatient program was found to reduce psychiatric and behavioral symptoms (Shaffer et al. 2019). A pilot open trial of the Emotion Awareness and Skills Enhancement (EASE) program which used mindfulness-based techniques to target

Awareness and Skills Enhancement (EASE) program which used mindfulness-based techniques to target impaired emotion regulation among adolescents with ASD observed improve-ments in emotion regulation, depression, anxiety, and irritability (Conner et al. 2019).

Several studies have involved both parents and children with ASD in interventions. Hwang et al. (2015) had mothers of children with ASD com-plete an 8-week mindfulness training prior to teaching their child mindfulness practices. Find-ings indicated improvements in problem behav-iors, parenting stress, and mindful parenting (Hwang et al. 2015). MyMind, a concurrent par-ent and child mindfulness intervention, has been shown to improve social and communicative skills, decrease internalizing and

intervention, has been shown to improve social and communicative skills, decrease internalizing and externalizing problems, improve emotion regulation, and increase adaptive functioning skills in youth and increase mindful parenting and quality of life in parents (de Bruin et al. 2015; Ridderinkhof et al. 2018; Salem-Guirgis et al. 2019). The research on mindfulness therapy in ASD, while preliminary, suggests that mindfulness-based therapies may be useful for a range of treatment targets.

Mineral Treatments  Definition Dietary minerals are chemical elements needed for mammals to maintain basic physiologic func-tioning. Minerals that are needed in larger amounts to maintain health (macrominerals) include calcium, phosphorous, magnesium, sodium, potassium, phosphorous, chloride, and sulfur. Lesser amounts of iron, manganese, cop-per, iodine, zinc, cobalt, fluoride and selenium, and molybdenum are necessary for cellular func-tioning (trace minerals). Minerals are absorbed from

and molybdenum are necessary for cellular func-tioning (trace minerals). Minerals are absorbed from dietary sources. The dietary reference index (DRI) publishes the required intake of minerals for age and gender. If a person with autism spec-trum disorder ingests a very restricted diet because of food aversions or is given a restricted diet as a proposed intervention for symptoms of autism, they might be at increased risk for diminished intake of minerals. For example, removal of dairy products

be at increased risk for diminished intake of minerals. For example, removal of dairy products from the diet eliminates the major source of calcium in milk products. Calcium is necessary both for bone growth and for many essential biochemical pathways including nerve conduction. Mineral supplementation in individ-uals with autism might be indicated if there is deficient nutritional intake (Stewart et al. 2015).

Many people with/without autism are deficient in the mineral iron. Iron deficiency will ultimately lead to low blood counts or anemia. Prior to that point, lowered iron stores may lead to fatigue and sleep disruption/restless leg syndrome, among other neurobehavioral symptoms. Iron supple-mentation would be recommended after labora-tory documentation of deficiency (Reynolds et al. 2012). In addition to physiologic replacement of nec-essary nutrients, a number of controversial thera-pies provide

to physiologic replacement of nec-essary nutrients, a number of controversial thera-pies provide minerals at amounts greater than recommended by the DRI to target symptoms of autism. Minerals included in novel therapy regi-mens include magnesium (given with vitamin B6) and zinc. Well-designed clinical trials do not sup-port routine supplementation of minerals at greater than the requirements determined by the DRI.

Blood and hair measurement of minerals has been used without scientific support to date to determine if individuals with autism have altered metabolic requirements for minerals or mineral levels purported to be associated with neurologic symptoms. Laboratory measurement of minerals in blood or hair is not currently a conventional component of the etiologic workup of individuals with autism. Testing for specific minerals may be necessary when there are suspected toxic expo-sures such as

Testing for specific minerals may be necessary when there are suspected toxic expo-sures such as environmental lead exposure. Ele-vated lead levels are associated with impaired learning and behavioral challenges. If elevated, chelation may be used medically to remove lead from the blood and body stores. Chelation is a medical procedure advocated by some practi-tioners for individuals with autism without sup-port of the scientific literature with the goal of increased excretion of heavy metals (a

sup-port of the scientific literature with the goal of increased excretion of heavy metals (a type of mineral) like mercury. There is no scientific evi-dence at this time that elevated levels of mercury or any other metal are associated with autism. Chelation increases excretion of other minerals from the body as well as the metal of concern and may impact the availability of minerals nec-essary for routine physiologic functions. Practi-tioners who prescribe chelation will prescribe supplements

routine physiologic functions. Practi-tioners who prescribe chelation will prescribe supplements containing minerals and trace min-erals that may be excreted along with the lead or other metal of concern. Chelation is not a conven-tional treatment for symptoms of autism and has associated risks although uncommon (James et al. 2015).

Minimal Speech Approach  Definition The minimal speech approach was developed by Potter and Whittaker (2001) to enable communi-cation in children with autism. This approach requires the caregiver or interventionist to use simple speech, consisting of one to three words, usually nouns, which are paired with nonverbal communication. The nonverbal communication can consist of a picture, an object, or a gesture, which help to facilitate comprehension. For exam-ple, using the minimal speech

or a gesture, which help to facilitate comprehension. For exam-ple, using the minimal speech approach, the ther-apist might say “lunch” and point to a picture communication symbol of a lunch box rather than saying “All right, choice time is over now. We need to put everything away and get ready for lunch. Let’s go.”

In order to create a communication-enabling environment, key characteristics of this approach include reducing the use of speech in all situa-tions, appropriate mapping of single words, giv-ing information in nonverbal ways, minimizing running commentary, delaying the use of speech when teaching new tasks, and avoiding a focus on relative and temporal terms (Potter and Whittaker 2001).

Children with autism often experience confusion when excess speech occurs during communicative interactions. This can lead to anx-iety and distress. The simplification of language aims to avert social disengagement and challeng-ing behaviors by facilitating understanding. Potter and Whittaker (2001) found that when a minimal speech approach is used consistently and appro-priately, children are more socially responsive and demonstrate more spontaneous communication.

Mirror Neuron System  Structure Mirror neurons are a unique subset of neurons located in motor areas of the brain, which are thought to play a central role in social communi-cation and imitation. They are active not only during the execution of movements but also dur-ing the passive observation of movements made by others. It has been hypothesized that the activ-ity of mirror neurons during observation of move-ment might represent an internal “motor simulation” of the observed movement. Such a

of move-ment might represent an internal “motor simulation” of the observed movement. Such a simulation may then be used as a basis for imitat-ing the observed movement or as a gateway for accessing the intentions, goals, and emotions associated with the movement in the mind of the observer. According to the hypothesis, the observer then attributes these intentions and emo-tions to the observed person in order to interpret their behavior. Individuals with autism have diffi-culties understanding

in order to interpret their behavior. Individuals with autism have diffi-culties understanding the intentions, states, and emotions of people around them. It has been suggested that these social difficulties may be caused by the development of abnormal mirror neurons. Despite the large amount of attention that this hypothesis has received in the popular and scientific literatures, the evidence supporting it has been weak and inconsistent. Below is a general overview of mirror neuron research in

it has been weak and inconsistent. Below is a general overview of mirror neuron research in monkeys and in humans followed by a description of the research related specifically to autism.

Function Monkey Mirror Neurons In 1996, Gallese et al. (1996) discovered that about 10% of neurons in ventral premotor area F5 of the macaque monkey respond not only when the monkey executes a particular movement – as expected in this cortical motor area – but also when the monkey passively observes the experi-menter performing that very same movement. These visuomotor neurons were named “mirror neurons” because their activity in the brain of the passively observing monkey seems to mirror that

neurons” because their activity in the brain of the passively observing monkey seems to mirror that of motor neurons active in the person actually executing the movement. Following this initial finding, in 1998, Fogassi et al. (1998) reported that mirror neurons also exist in the inferior pari-etal lobule (IPL) of the macaque and established the idea of a “mirror system” composed of these two cortical areas.

In these and further studies (Caggiano et al. 2009; Ferrari et al. 2003, 2005; Fogassi et al. 2005; Kohler et al. 2002; Umilta et al. 2001), mirror neurons were identified based on two crit-ical response characteristics: First, mirror neu-rons respond in a selective manner to a particular preferred movement such that some neurons respond, for example, only to grasping with the whole hand while others respond only to gripping with the fingertips. In this manner, mir-ror neuron responses

while others respond only to gripping with the fingertips. In this manner, mir-ror neuron responses distinguish between differ-ent movements in an analogous manner to primary visual cortex neurons that distinguish between different visual stimulus orientations. Second, mirror neurons respond similarly to their preferred movement regardless of whether it is being passively observed or actively exe-cuted; thus, the same mirror neuron that responds when the monkey grips with the fingertips also

exe-cuted; thus, the same mirror neuron that responds when the monkey grips with the fingertips also responds when the money passively observes someone else gripping with the fingertips. These unique characteristics distinguish mirror neurons from the many other visual, motor, and visuomotor neurons that comprise about 90% of the neurons in areas F5 and IPL of the monkey and are involved in a multitude of visuomotor processes needed for the coordination of move-ment (Castiello 2005).

The discovery of mirror neurons generated much excitement regarding their possible role in mechanisms of movement understanding and imi-tation. When we observe someone performing a movement, such as waving their hand to indicate “hello,” how do we instantaneously understand that their intention is to greet us? According to the “simulation theory,” we covertly and uncon-sciously simulate ourselves performing the move-ment, then access our own associated intentions and goals for that particular

performing the move-ment, then access our own associated intentions and goals for that particular movement and assign them to the person we are observing (Rizzolatti and Craighero 2004). This chain of neural com-putations supposedly enables us to both under-stand and ascribe intentionality to others. Mirror neurons have, therefore, been proposed as the physiological mechanism that enables a critical step in this process: precise visual to motor map-ping (Rizzolatti and Sinigaglia 2010).

a critical step in this process: precise visual to motor map-ping (Rizzolatti and Sinigaglia 2010). Specifi-cally, according to the theory, whenever you observe someone performing an action, particular movement-selective mirror neurons embedded in your motor system are activated, enabling you to simulate yourself performing that movement and to access your own associated intentions and goals (probably through activity of other brain areas, including the limbic system). Taken a step further,

through activity of other brain areas, including the limbic system). Taken a step further, mirror neurons can be thought of as a sensorimo-tor gateway for forming an internal representation of the observed person’s intentions and emotions based on their body language, facial expressions, actions, and so on (Rizzolatti and Craighero 2004; Rizzolatti and Sinigaglia 2010).

It has also been suggested that the same act of motor simulation facilitates imitation and thereby underlies our ability to learn new movements by imitating others (Buccino et al. 2004b; Iacoboni et al. 1999). In this case, covert simulation, which involves activating the precise motor neurons that encode the proper kinematics and dynamics nec-essary for the execution of the observed move-ment, may be followed by overt imitation, which involves activating the same neurons along with additional

be followed by overt imitation, which involves activating the same neurons along with additional motor neurons that actually command the appropriate muscle contractions.

It is important to note two rather surprising points regarding mirror neuron research in non-human primates. First, all of the described mirror neurons responded only to object-oriented move-ments such as grasping or ripping an object. Thus, while the macaque monkey does display several social and communicative movements (e.g., friendliness by lip smacking or threatening by exposing teeth), there have been no reports of mirror neurons responding to such movements as one might have expected if

have been no reports of mirror neurons responding to such movements as one might have expected if this system was to mediate the representation of other’s intentional-ity. This lack of evidence argues against the sug-gestion that mirror neurons enable the monkey to understand the intentions and emotions of other monkeys. Second, although macaque monkeys clearly possess mirror neurons, this species does not naturally learn by imitation, except for, per-haps, a very short period at infancy

species does not naturally learn by imitation, except for, per-haps, a very short period at infancy (Ferrari et al. 2006). The absence of imitative behavior in the macaque challenges the hypothesis that mirror neurons enable imitation.

Human Mirror System The excitement regarding the possible role of mirror neurons in social cognition drove many investigators to search for the human homologue of the monkey mirror system. Early neuroimaging studies utilizing positron emission topography (PET), functional magnetic resonance imaging (fMRI), electroencephalograph (EEG), and magnetoencephalograph (MEG) have applied three types of protocols to elicit mirror neuron responses in humans: passive movement observa-tion, active movement

to elicit mirror neuron responses in humans: passive movement observa-tion, active movement execution, and imitation (simultaneous observation and execution). This section will focus on the fMRI studies because this technique offers the best spatial resolution and offers the strongest evidence regarding the corti-cal location of responsive neural populations. The discussion below, however, is just as applicable to studies using the other neuroimaging techniques that have generally used the same

as applicable to studies using the other neuroimaging techniques that have generally used the same experimental protocols and the same underlying logic.

In the first protocol, subjects passively viewed images or video clips of movements, such as a smiling face or a hand grasping an object, and their neural responses were compared against a rest condition, following the logic that mirror neurons respond during movement observation and not during rest (Buccino et al. 2001, 2004a; Iacoboni et al. 2005). In the second protocol, responses during movement execution were recorded to first isolate cortical motor areas and then assess responses to

movement execution were recorded to first isolate cortical motor areas and then assess responses to movement observation within these predefined areas (mirror neurons are expected to respond both during observation and execution of a movement). In the third protocol, an imitation condition was added and the responses during imitation were compared with responses during observation and during execu-tion with the logic that mirror neurons should be more active during simultaneous observation and

with the logic that mirror neurons should be more active during simultaneous observation and execution than during execution or observation alone (Buccino et al. 2004b; Carr et al. 2003; Grezes et al. 2003; Iacoboni et al. 1999; Leslie et al. 2004; Tanaka and Inui 2002).

These fMRI studies consistently reported that two cortical areas respond during movement observation, execution, and imitation: the anterior intraparietal sulcus (aIPS) and the ventral pre-motor (vPM). Most of the studies proposed that these areas compose the human “mirror system,” implicitly suggesting that they contain mirror neu-rons. Further neuroimaging studies have attempted to characterize the responses of the human “mirror system” during observation, exe-cution, and imitation of

the responses of the human “mirror system” during observation, exe-cution, and imitation of different movements. For example, comparing mirror system responses to hand movements that have a goal versus move-ments that do not (Iacoboni et al. 2005) or in which movements are made by a human arm versus by a robot arm (Gazzola et al. 2007). The majority of these studies interpreted stronger mir-ror system responses to particular conditions as evidence of mirror neuron preference for particu-lar

system responses to particular conditions as evidence of mirror neuron preference for particu-lar types of movements rather than others.

There are two concerns with these early exper-iments and the interpretation of their results. The first is that these experiments were unable to mea-sure exclusive mirror neuron activity. For exam-ple, the typical results of passive movement observation and imitation experiments reveal strong responses in many cortical areas, including areas that are not believed to contain mirror neu-rons (e.g., primary visual cortex). This is clear evidence that many other neurons (e.g., visual neurons) in

primary visual cortex). This is clear evidence that many other neurons (e.g., visual neurons) in diverse cortical areas respond strongly during these tasks.

Limiting the analysis to cortical areas that respond during movement exe-cution (by masking out areas that do not) does focus the analysis on more meaningful brain areas but does not solve the problem. As mentioned above, 90% of neurons in “mirror system” areas are not mirror neurons but are rather visual neu-rons that respond only during movement observa-tion, motor neurons that respond only during movement execution, or visuomotor neurons that respond during both but do not respond

only during movement execution, or visuomotor neurons that respond during both but do not respond selec-tively to movement identity (e.g., neurons selec-tive for object rather than grasp type (Murata et al. 2000). Since neuroimaging methods record the average response of very large neural populations, how can one know if the reported responses were generated by the activity of mirror neurons or by the activity of any of these other intermingled neural populations? For example, if a study

or by the activity of any of these other intermingled neural populations? For example, if a study reports that mirror system areas exhibit stronger fMRI responses during observation of movements with goals than movements without goals (e.g., Iacoboni et al. 2005), does it necessarily mean that mirror neurons responded more strongly? Or could it be that visual neurons responded more strongly because video clips of movements with goals contain richer visual stimuli than video clips of movements

video clips of movements with goals contain richer visual stimuli than video clips of movements without goals?

The second, and perhaps more important con-cern, is that these studies did not assess movement selectivity. Movement selectivity is a defining physiological signature of mirror neurons in the monkey and is of central importance for the hypothesis that mirror neurons play a role in map-ping perception to action. If mirror neurons indeed enable understanding and/or imitation of move-ments, subpopulations of mirror neurons must distinguish between different movements such that particular mirror

of mirror neurons must distinguish between different movements such that particular mirror neurons must respond selec-tively to particular movements (Dinstein 2008; Dinstein et al. 2008b). Without clear response selectivity across observation and execution, the mirror neuron theory falls apart.

Imagine, for example, a situation where you observe someone executing a “thumbs up” movement. In order to properly understand that movement by simula-tion, it is critical that you activate the correct motor neurons encoding that particular move-ment. If you accidently activate another group of motor neurons that encode the “thumbs down” movement, you will arrive at the wrong conclu-sion regarding the intention of the person you are observing. Assessing movement selectivity in mirror system

the intention of the person you are observing. Assessing movement selectivity in mirror system areas is, therefore, a crucial step for confirming or refuting the mirror neuron the-ory (Dinstein 2008; Dinstein et al. 2008b).

A common method for assessing neural selec-tivity using fMRI takes advantage of the fact that sensory neurons adapt/habituate when their pre-ferred stimulus is presented repeatedly (Grill-Spector 2006; Grill-Spector and Malach 2001; Krekelberg et al. 2006). Cortical areas containing mirror neurons may, therefore, exhibit reduced fMRI responses when the same movement is pre-sented repeatedly (a single neural population responds repeatedly and adapts) in contrast to when different movements are

neural population responds repeatedly and adapts) in contrast to when different movements are presented (different neural populations respond and there is no adaptation). Mirror neurons may be expected to adapt during trials where the same movement is repeatedly observed, repeatedly executed, observed and then executed, or executed and then observed (cross-modal adaptation). Showing such response selectivity in mirror system areas would be strong evidence for the existence of mirror neurons and

selectivity in mirror system areas would be strong evidence for the existence of mirror neurons and would also offer a tool for further characterizing their selectivity for particu-lar types of movements. For example, does adap-tation occur across different movements that share a common goal (waving “hello” with either left or right hand) but not across different movements that do not (waving “hello” with left hand and waving “come here” with right hand). Such results would offer important

“hello” with left hand and waving “come here” with right hand). Such results would offer important evidence regarding the movement characteristics that are encoded by human mirror neurons.

Several recent studies have used fMRI adapta-tion protocols to assess response selectivity for different hand movements. These studies have reported visual (Dinstein et al. 2007; Hamilton and Grafton 2006; Shmuelof and Zohary 2005), motor (Dinstein et al. 2007; Hamilton and Grafton 2009), and cross-modal (Chong et al. 2008; Kilner et al. 2009; Lingnau et al. 2009) adaptation in mirror system areas during observation and exe-cution of different hand movements. While some of the studies used

areas during observation and exe-cution of different hand movements. While some of the studies used object-oriented hand movements (e.g., pulling, gripping, and grasping objects) (Hamilton and Grafton 2006; Kilner et al. 2009; Shmuelof and Zohary 2005), others used symbolic or gestural hand movements (e.g., thumbs up, rock, paper, scissors) (Chong et al. 2008; Dinstein et al. 2007; Hamilton and Grafton 2009; Lingnau et al. 2009). A consistent finding across all studies was that mirror system

Grafton 2009; Lingnau et al. 2009). A consistent finding across all studies was that mirror system areas exhibited visual adaptation when the same movement was observed repeatedly and motor adapta-tion when the same movement was executed repeatedly. Such adaptation could hypothetically take place in two independent neural populations, one visual and the other motor, or in a single neural population of mirror neurons. While these results do not prove the existence of mirror neu-rons in humans,

of mirror neurons. While these results do not prove the existence of mirror neu-rons in humans, they do suggest that neurons with visual and motor movement selectivity are intermingled within mirror system areas in humans. This is somewhat encouraging because a fundamental feature of cortical organization is that neighboring neurons are strongly connected and perform common computations. The exis-tence of neighboring intermingled neurons with movement selectivity, therefore, does suggest the

of neighboring intermingled neurons with movement selectivity, therefore, does suggest the existence of some form of mirror mechanism in humans. More persuasive is a recent study using object-oriented hand movements, which reported visual and motor adaptation as well as both forms of cross-modal adaptation in mirror system areas (Kilner et al. 2009). Cross-modal adaptation could only take place in a mirror neuron population that adapts when observing and then executing or when executing and

in a mirror neuron population that adapts when observing and then executing or when executing and then observing the same hand movement. Taken together, this evidence suggests that mirror neurons do exist in humans and that, similarly to mirror neurons found in the macaque monkey, they respond selectively to movements involving objects. It is not clear whether there are mirror neurons in humans that respond selectively to gestural and/or communi-cative movements.

Another method for assessing neural selectivity using fMRI involves the comparison of voxel-by-voxel response patterns using differ-ent classification techniques. This analysis is par-ticularly useful in situations where subpopulations of neurons with different selectivity are distributed unevenly within multiple neighboring voxels. In such cases, each subpopulation is expected to gen-erate a unique fMRI response pattern that appears in trials containing its preferred stimulus and is distinct

fMRI response pattern that appears in trials containing its preferred stimulus and is distinct from the pattern generated by neighbor-ing subpopulations in trials containing their pre-ferred stimuli. This technique was successfully used, for example, to study the selectivity of human visual cortex neurons to visual orientations (Kamitani and Tong 2005), visual motion (Kamitani and Tong 2006), and visual categories (Haxby et al. 2001).

Two recent fMRI studies have used this tech-nique to assess selectivity for different hand movements in mirror system areas during both observation and execution. The main difference between the studies was that in the first, subjects observed and executed symbolic hand movements (rock, paper, or scissors), while in the second, movements were oriented toward objects (grasping or pulling objects). The first study reported that classification of the fMRI response patterns in aIPS enabled accurate

The first study reported that classification of the fMRI response patterns in aIPS enabled accurate identification of the movement observed or performed on each trial. This shows that each movement was associated with a unique spatial response pattern generated by a unique and selective neural sub-population (Dinstein et al. 2008a). If aIPS were to contain only mirror neurons, an identical fMRI response pattern would be expected during obser-vation and execution of the same movement. This,

response pattern would be expected during obser-vation and execution of the same movement. This, however, was not the case as accurate movement identification by response pattern was possible only within the visual or motor modality but not across modalities. The second study, using object-oriented movements, did report accurate move-ment classification in aIPS both when assessing responses within each modality as well as across the two modalities (Oosterhof et al. 2010). These results seem to

each modality as well as across the two modalities (Oosterhof et al. 2010). These results seem to suggest a dissociation between responses to symbolic hand movements and object-oriented hand movements. Again, clear evidence supporting the existence of mirror neu-rons in humans seems to exist when considering object-oriented movements rather than gestural movements.

To conclude, the adaptation and classification studies seem to present converging evidence suggesting that, like the monkey, humans have mirror neurons that respond selectively to differ-ent movements involving object manipulation. The case for mirror neurons selective for gestural and communicative movements seems less clear and is somewhat at odds with the mirror system hypothesis suggesting that mirror neurons enable social communication. Proper social communica-tion is mostly based on

that mirror neurons enable social communication. Proper social communica-tion is mostly based on correct interpretation of body language, gestures, and expressions rather than interpretation of object-oriented movements such as grasping or pulling.

Pathophysiology Mirror System Dysfunction in Autism? Impaired social interaction is one of the three core behavioral symptoms of autism (DSM-IV-TR 2000). Impaired imitation may also be a charac-teristic of autism, although there is controversy regarding its consistency (Hamilton et al. 2007). According to the “dysfunctional mirror system theory of autism,” these behavioral problems are caused by dysfunctional mirror neurons that impair the individual’s ability to simulate observed

caused by dysfunctional mirror neurons that impair the individual’s ability to simulate observed movements/actions (Williams et al. 2001). The idea is that inaccurate simulation or perhaps even a complete lack of simulation dis-rupts the ability to appropriately interpret the goals, intentions, and emotions associated with observed hand gestures, facial expressions, and body language of others. This theory has received an extraordinary amount of attention in both the popular press (Blakeslee

This theory has received an extraordinary amount of attention in both the popular press (Blakeslee 2006; Ramachandran and Oberman 2006) and the scientific press (Buccino and Amore 2008; Iacoboni and Dapretto 2006; Iacoboni and Mazziotta 2007; Keysers and Gazzola 2006; Le Bel et al. 2009; Oberman and Ramachandran 2007; Perkins et al. 2010; Rizzolatti and Fabbri-Destro 2008, 2009; Rizzolatti et al. 2009; Williams 2008; Williams et al. 2001). The empirical evidence supporting it, however, has been

2009; Williams 2008; Williams et al. 2001). The empirical evidence supporting it, however, has been remarkably sparse and inconsistent.

Evidence in support of the dysfunctional mir-ror system theory of autism has come from sev-eral EEG/MEG (Honaga et al. 2010; Martineau et al. 2008; Nishitani et al. 2004; Oberman et al. 2005) and fMRI (Dapretto et al. 2006; Hadjikhani et al. 2007; Schulte-Ruther et al. 2011) studies that have reported significantly weaker responses in mirror system areas of indi-viduals with autism, as compared to controls, during passive observation or active imitation of hand movements or facial expressions.

controls, during passive observation or active imitation of hand movements or facial expressions. Weaker mirror system responses in autism have been interpreted as evidence for weak mirror neuron responses that are unable to complete the proper simulation processes supposedly needed to understand the meaning of the observed movements or imitate them. There have been, however, a similar number of EEG/MEG (Avikainen et al. 1999; Fan et al. 2010; Oberman et al. 2008; Raymaekers et al. 2009) and

EEG/MEG (Avikainen et al. 1999; Fan et al. 2010; Oberman et al. 2008; Raymaekers et al. 2009) and fMRI (Dinstein et al. 2010; Marsh and Hamilton 2011; Williams et al. 2006) studies that have reported equivalent mirror system responses in autism and control groups and one fMRI study that has even reported significantly stronger mirror system responses in autism as compared to controls during the observation of hand movements (Martineau et al. 2010). As a side note, it is interesting that all of

of hand movements (Martineau et al. 2010). As a side note, it is interesting that all of the studies above, regardless of the reported response strength in autism, used gestural hand move-ments, finger tapping, or facial expressions rather than object-oriented movements. The mixed results were, therefore, not a consequence of using different movements.

Numerous methodological issues could have generated the heterogeneous results described above. For example, it is difficult to control the behavior of subjects during EEG and fMRI exper-iments. When subjects are asked to imitate a movement, delays in the timing or length of movement execution may greatly impact the esti-mated brain response. If subjects with autism imi-tate the movement later or more slowly than controls, their estimated brain responses will seem weaker because of a temporal

more slowly than controls, their estimated brain responses will seem weaker because of a temporal mismatch between the expected and actual brain response. In such a situation, reduced mirror system responses would have little to do with mirror system abnormalities in autism and a lot to do with a different choice of behavioral response in

autism. Regardless of the true reason underlying the reduced responses, the results discussed above clearly show that individuals with autism can exhibit normal mirror system responses under some experimental conditions (Avikainen et al. 1999; Dinstein et al. 2010; Fan et al. 2010; Marsh and Hamilton 2011; Martineau et al. 2010; Oberman et al. 2008; Raymaekers et al. 2009; Williams et al. 2006). This argues against the claim of a generally dysfunctional mirror system in autism. As discussed

This argues against the claim of a generally dysfunctional mirror system in autism. As discussed previously, perhaps the biggest concern with the interpretation of the studies above is their lack of ability to isolate mirror neuron responses and their lack of ability to assess movement selectivity. With this in mind, the reports above actually say very little about mirror neuron integrity in autism. Weak, normal, or excessive fMRI responses in mirror system areas could be generated by different

Weak, normal, or excessive fMRI responses in mirror system areas could be generated by different combinations of visual neuron responses during observation and motor neuron responses during imitation. There is, therefore, no reason to assume that any of the reported differences in fMRI responses between autism and control groups were due to differences in mirror neuron responses. Furthermore, these studies do not offer any evidence for determining whether neural subpopulations in mirror system

studies do not offer any evidence for determining whether neural subpopulations in mirror system areas exhibit normal or abnormal movement selectivity in autism. The “dysfunctional mirror system theory of autism” would predict weak or even a complete lack of movement-selective responses in autism, which would be expected to yield an impaired simulation process. Is this indeed the case? A recent fMRI adaptation experiment attempted to address this particular question and reported that mirror

fMRI adaptation experiment attempted to address this particular question and reported that mirror system responses in individuals with autism exhibited equivalent movement selectivity to that found in controls (Dinstein et al. 2010). In this study, individuals with autism exhibited not only strong mirror system responses during the observation of symbolic hand move-ments (e.g., rock, paper, scissors, thumbs up), but they also exhibited adaptation in trials where the same movement was repeatedly

thumbs up), but they also exhibited adaptation in trials where the same movement was repeatedly observed or repeatedly executed. These adaptation results were interpreted as evidence for typical movement selectivity in mirror system areas of individuals with autism. Since selectivity is one of the two defining characteristics of mirror neu-ron responses, these data offer strong evidence against a general mirror system dysfunction in autism. All of the high-functioning individuals with autism who

mirror system dysfunction in autism. All of the high-functioning individuals with autism who participated in this study exhibited ADOS scores that were well above the criteria for autism rather than the milder diagnoses of PDD-NOS and Asperger’s syndrome. These results, therefore, cannot be attributed to less severe behavioral symptoms in the participating subjects. Note that this study, like all other mirror system studies in autism, used gestural hand move-ments rather than object-oriented

other mirror system studies in autism, used gestural hand move-ments rather than object-oriented move-ments. Since cross-modal adaptation is a key sig-nature of mirror neurons, which seems to be apparent only in responses to object-oriented movements, it would be important to also deter-mine the integrity of such responses in autism.

Finally and more generally, it is important to consider how useful it is to describe autism as a disorder of one particular neural population such as mirror neurons. Most of the symptoms associated with autism do not seem related to mirror neurons at all. These include the core diagnostic symptoms of repetitive behaviors and language impairments (DSM-IV-TR 2000) as well as the commonly described secondary symptoms, which include sensory hypo/hypersensitivities (Jones et al. 2003; Kanner 1943;

secondary symptoms, which include sensory hypo/hypersensitivities (Jones et al. 2003; Kanner 1943; Minshew and Hobson 2008; O’Neill and Jones 1997), sleep problems (Cortesi et al. 2010; Richdale and Schreck 2009), and gastroin-testinal problems (Buie et al. 2010a, b). Furthermore, much of the research into autism suggests that multiple neural abnormalities exist in many brain areas. fMRI studies have reported abnormally weak neural responses in autism not only in mirror system areas but also in

reported abnormally weak neural responses in autism not only in mirror system areas but also in superior temporal sulcus (Pelphrey and Carter 2008), face processing areas (Dawson et al. 2005), “mentalizing” areas (Marsh and Hamilton 2011), and cingulate cortex (Chiu et al. 2008), among others. Reports of abnormal functional (Minshew and Keller 2010) and anatom-ical (Courchesne et al. 2007) connectivity have suggested that neural communication and synchro-nization may be altered (mostly

connectivity have suggested that neural communication and synchro-nization may be altered (mostly decreased) across multiple brain areas in autism. Developmental studies have reported early overgrowth of gray and white matter in frontal cortex, temporal cortex, and cerebellum, which is followed by arrested growth during adolescence (Courchesne et al. 2004). Genetic studies have reported numerous mutations, deletions, and single-nucleotide polymorphisms that may increase the risk of developing

mutations, deletions, and single-nucleotide polymorphisms that may increase the risk of developing autism. Most of the associated genes are involved in gen-eral cellular development including dendritic growth and synaptic maturation (Geschwind and Levitt 2007). Such genetic abnormalities would be expected to create widespread excitation-inhibition imbalances (Rubenstein and Merzenich 2003) as well as abnormalities in the neural architecture and connectivity of multiple brain areas, thereby,

well as abnormalities in the neural architecture and connectivity of multiple brain areas, thereby, impacting multiple behaviors (Bourgeron 2009). Individuals with autism have abnormally high chances of developing epilepsy throughout life. It is estimated that 20–30% of individuals with autism have epileptic seizures at some point in life and that up to 60–70% may exhibit abnormal epileptiform-like EEG recordings (Tuchman and Rapin 2002). When considering this larger breadth of evidence, it

EEG recordings (Tuchman and Rapin 2002). When considering this larger breadth of evidence, it seems that describing autism as a disorder of mirror neurons may not be particularly useful in capturing the multitude of behavioral and physiological elements associated with the disorder.

To conclude, despite its surprising popularity (Iacoboni and Dapretto 2006; Iacoboni and Mazziotta 2007; Rizzolatti and Fabbri-Destro 2008, 2009; Williams et al. 2001), at present, the evidence supporting the “dysfunctional mirror system hypothesis of autism” seems rather sparse, inconsistent, and controversial (Baird et al. 2011; Dinstein et al. 2008b; Hamilton 2009; Hamilton et al. 2007). Further assessment of response selec-tivity in autism using adaptation and classification techniques is

assessment of response selec-tivity in autism using adaptation and classification techniques is warranted in order to reveal useful data that will support or refute the hypothesis. The integrity of mirror system selectivity in autism should be tested with gestural hand movements and facial expressions, which seem particularly relevant to the social symptoms of autism, as well as with object-oriented movements, which seem to be the most effective movements for generating mirror neuron activity in

movements, which seem to be the most effective movements for generating mirror neuron activity in both mon-keys and humans.

**Mirror Neurons** David Saunders Yale Child Study Center, New Haven, CT, USA Synonyms: Mirror neuron system  Definition Mirror neurons were first reported in macaque monkeys in 1992 and subsequently identified in humans. First localized to the ventral premotor area, the Mirror Neuron System (MNS) has also been linked to the inferior parietal lobule, the dorsal premotor, and primary motor cortex, among other regions. Mirror neurons modulate their activity in at least two instances: when an

among other regions. Mirror neurons modulate their activity in at least two instances: when an individual executes a motor action and when observing the same (or similar) action performed by another individual. In this way, their activity is modulated by both action execution and observation of an action, which distinguishes mirror neurons from other neurons that discharge with either execution or observation, but not both. Observed actions are directly mapped onto the MNS of the observer,

or observation, but not both. Observed actions are directly mapped onto the MNS of the observer, suggestive of the intimately intertwined natures of action execution and observation. Further, it sug-gests that the interpretation of the actions of others may require the use of our own motor system. The MNS has been proposed as a potential etiology for Autism Spectrum Disorder (ASD), though it is a subject of fervent debate. The MNS is thought to encode the goal of an action, not just the motor

a subject of fervent debate. The MNS is thought to encode the goal of an action, not just the motor component, meaning that the MNS contains a mechanism by which one under-stands other people, and for imitating them. As such, the MNS is thought to be a key component of social cognition. Because poor social cognition is a hallmark of ASD, researchers have theorized that a dysfunctional MNS may be a neurobiolog-ical basis for the disorder. This hypothesis is commonly called the Broken Mirror

be a neurobiolog-ical basis for the disorder. This hypothesis is commonly called the Broken Mirror Theory (BMT).

One researcher distinguishes three different variants of the BMT, each of which makes a different claim about the mechanism by which a disrupted MNS contributes to ASD. The imitation hypothesis suggests that an altered MNS leads to poor self-other mapping that is thought to be at the heart of abnormalities in social cognition in ASD (e.g., theory of mind). The simulation hypothesis is predicated on the notion that the MNS provides the basis for simulating other indi-viduals. A disrupted MNS,

on the notion that the MNS provides the basis for simulating other indi-viduals. A disrupted MNS, it is theorized, leads to an inability to simulate not only actions but also mental and emotional states. The action chain variant rests on the claim that some neurons within the MNS are only activated when an action is embedded in a sequence or chain. When a neuron of this type is activated at the beginning of an action sequence, the individual is able to predict how the entire chain of events

beginning of an action sequence, the individual is able to predict how the entire chain of events will unfold. Disruptions in this specific part of the MNS lead to an inability to understand how a given action is embedded in a particular context, thus leading to difficulties in social cognition.

Though the data is far from conclusive, evidence for an abnormal MNS in individuals with ASD can be found across multiple method-ologies, including electroencephalography, mag-netoencephalography, transcranial magnetic stimulation, eye tracking, structural MRI, and functional MRI.

**Mirtazapine** Rizwan Parvez Yale Child Study Center, New Haven, CT, USA Synonyms: Remeron  Definition An antidepressant medication. Mirtazapine exerts its antidepressant effect by inhibiting alpha-2 adrenergic presynaptic receptors, resulting in increased levels of serotonin and norepinephrine. This is an alternate mechanism to that used by SSRI medications. Additionally, mirtazapine blocks H-1 histamine receptors, which may con-tribute to its sedating effects. Mirtazapine is also associated

histamine receptors, which may con-tribute to its sedating effects. Mirtazapine is also associated with increased appetite, higher risk of weight gain, dry mouth, and constipation.

**Mismatch Negativity** Benjamin Aaronson1 and Raphael Bernier2 1Psychiatry and Behavioral Sciences, UWAutism Center, University of Washington, Seattle, WA, USA

2Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA  Definition The mismatch negativity (MMN) is an event-related potential (ERP) evoked in response to a perceived change in sensory stimuli. It is com-monly elicited in an oddball paradigm in which a standard stimulus is paired with a deviant stimu-lus, the standard being presented the majority of instances. It generally occurs 150–250 ms after the presentation of the deviant stimulus, though in children its latency

occurs 150–250 ms after the presentation of the deviant stimulus, though in children its latency is delayed to between 200 and 300 ms. The MMN is typically evalu-ated by calculating a difference wave, computed by subtracting the ERP in response to the stan-dard stimulus from the ERP to the deviant stimulus.

Historical Background Electrophysiology provides an avenue to examine mental functioning that may not be manifested behaviorally. It allows for the investigation of aspects of cognition, perception, and other biolog-ical bases for behavior. This is especially useful in assessing infant and clinical populations that may lack the requisite capacities for expression. Electroencephalography (EEG) consists of recording the brain’s electrical activity. In humans, this is accomplished by placing

consists of recording the brain’s electrical activity. In humans, this is accomplished by placing elec-trodes at various locations on the scalp. Electrical surface recordings are limited in terms of spatial resolution, in that it is difficult to precisely iden-tify the source of electrical fields in the brain. However, electrical recordings can provide excel-lent temporal resolution, revealing the brain’s response effectively in real time. Event-related potentials (ERPs) are electrical activity

brain’s response effectively in real time. Event-related potentials (ERPs) are electrical activity time-locked to a particular event. ERPs are commonly utilized to assess the brain’s pro-cessing of external stimuli. In order to demon-strate that the recorded response is related to the target event and not to extraneous influences, a series of trials are averaged together to create a composite waveform. Waveforms can be aver-aged across trials within a single subject, as well as across

waveform. Waveforms can be aver-aged across trials within a single subject, as well as across individuals and groups. The mismatch negativity (MMN) was first described by Näätänen and colleagues in a 1978 paper examining negative potentials via EEG in response to deviations in tone frequency. The MMN refers to an automatic neurological response to a change in auditory stimuli, represented by a peak difference generally observed 150–250 ms poststimulus. The degree of variance between the stimuli

difference generally observed 150–250 ms poststimulus. The degree of variance between the stimuli required to elicit the neural MMN response is approximately the difference required for behavioral discrimination. ERPs such as the MMN are assessed in terms of amplitude – power or voltage, and latency – timing. MMN amplitude has been associated with degree of deviant contrast and accuracy of dis-crimination, with increases in amplitude associ-ated with greater contrast and greater discrimination,

with increases in amplitude associ-ated with greater contrast and greater discrimination, and decreases in amplitude asso-ciated with reduced contrast and reduced discrim-ination. Earlier latency has also been associated with greater stimulus contrast.

The MMN has been demonstrated in response to wide variety of stimuli. These include computer-generated sounds such as sinusoidal tones and musical chords, as well as human speech sounds such as vowels and consonant pho-nemes. Among these stimuli, the MMN has been shown to be sensitive to changes in frequency, pitch, intensity, duration, and presentation order. More recently, researchers have begun to explore MMN equivalents in response to visual and olfac-tory stimuli. The MMN has been

begun to explore MMN equivalents in response to visual and olfac-tory stimuli. The MMN has been consistently elicited inde-pendent of directed attention. Further, it has been demonstrated in the context of multiple-competing auditory streams. However, competing auditory stimuli can diminish MMN amplitude. Competing visual stimuli generally do not impact the MMN. Conversely, variations in background noise which elicit the MMN response can impact attention, reorienting a person to an anomalous

noise which elicit the MMN response can impact attention, reorienting a person to an anomalous environmental stimulus. This highlights an important developmental and operational function of the MMN. The MMN represents the brain’s perception of an anomalous event. It is often followed by a positive peak occurring between 250 and 300 ms. This positive potential, known as the P3a, is an elec-trophysiological marker of novelty and represents the automatic reorienting of attention. Thus, the MMN is

marker of novelty and represents the automatic reorienting of attention. Thus, the MMN is a functional precursor, evidencing the automatic perception of a deviant stimulus, lead-ing to the actual reorienting of attention as evidenced by the P3a (for review, see Friedman et al. 2001). The source of the MMN appears to be in the auditory cortex, as evidenced by scalp distribution data, studies of magnetic encephalography, intra-cranial recordings, and cases of brain lesions. Additional data reveal

encephalography, intra-cranial recordings, and cases of brain lesions. Additional data reveal the frontal lobe as a con-tributing generator. It is suggested that the frontal lobe involvement may be related to attentional switching associated with the MMN (Alho 1995). Other studies have evidenced that the MMN response elicited by speech sounds is pri-marily sourced in the left temporal lobe, whereas MMN in response to nonspeech sounds is primar-ily sourced in the right temporal lobe (Kujala

MMN in response to nonspeech sounds is primar-ily sourced in the right temporal lobe (Kujala 2007). Various studies have demonstrated the effects of training on the MMN. Individuals, who at the beginning of a session could not behaviorally discriminate between divergent stimuli and failed to exhibit a corresponding MMN, later learned through exposure to behaviorally discriminate between the stimuli and exhibited a parallel MMN response. This further demonstrates the value of the MMN as a

stimuli and exhibited a parallel MMN response. This further demonstrates the value of the MMN as a real-time index of learning and discrimination.

Current Knowledge As an electrophysiological index of auditory per-ception that closely matches behaviorally observed capabilities, the MMN provides a valuable tool in the biological assessment of lan-guage and associated capacities. It has accord-ingly been utilized in the scientific examination of autism spectrum disorders (ASD). Given that deficits in language and social orienting are prom-inent features of autism spectrum disorders, a contributing factor in these impairments may be an

features of autism spectrum disorders, a contributing factor in these impairments may be an inability to perceive and process contrasting auditory stimuli, especially speech sounds. Thus, the MMN provides a potential method for explor-ing auditory processing in ASD. A limited number of studies have examined the MMN in ASD. Results from these studies have not been entirely consistent, though a variety of studies have demonstrated MMN and other ERP dif-ferences in ASD subjects as compared with

of studies have demonstrated MMN and other ERP dif-ferences in ASD subjects as compared with controls. These have included differences in amplitude, latency, and hemispheric distribution. Divergent findings may be due to differences in paradigm design, participant characteristics, and diagnostic inclusion criteria. A series of studies have shown enhanced MMN in ASD (Ferri et al. 2003; Jansson-Verkasalo et al. 2003; Kujala et al. 2007, 2010; Lepisto et al. 2005, 2006, 2007, 2008). The most common

et al. 2003; Kujala et al. 2007, 2010; Lepisto et al. 2005, 2006, 2007, 2008). The most common finding among these studies is an increase in amplitude, particularly over the right hemisphere. Some studies have also evidenced shorter latencies (Ferri et al. 2003; Jansson-Verkasalo et al. 2003; Kujala et al. 2007; Lepisto et al. 2005, 2007). This is consistent with behav-ioral findings indicating heightened auditory dis-crimination abilities in ASD (Gomot et al. 2002). Enhanced perceptual ability

auditory dis-crimination abilities in ASD (Gomot et al. 2002). Enhanced perceptual ability may in fact adversely impact language learning, reflecting an inability to ignore irrelevant stimuli.

Other studies have failed to show MMN or shown diminished MMN amplitude in ASD (Dunn et al. 2008; Kuhl et al. 2005; Lepisto et al. 2005, 2006). These findings are generally interpreted to evidence reduced discrimination, with obvious implications for language deficits. In a noteworthy study, Kuhl et al. (2005) exam-ined MMN and behavioral speech preferences in a sample of school-aged children with and without ASD. The paradigm involved an auditory prefer-ence task, assessing a child’s preference

and without ASD. The paradigm involved an auditory prefer-ence task, assessing a child’s preference for speech or nonspeech stimuli, and an ERP task, assessing MMN responses to changes in consonant-vowel speech sounds. On a group level, children with ASD exhibited a preference for nonspeech sounds and failed to exhibit MMN. Typically developing controls, chronologically and mentally age-matched, exhibited a preference for speech sounds and exhibited a typical MMN response. Interestingly, when

exhibited a preference for speech sounds and exhibited a typical MMN response. Interestingly, when the ASD group was subdivided based on speech preference, the chil-dren with ASD who preferred speech sounds exhibited MMN responses similar to typical con-trols. According to the authors, this finding pro-vides evidence for a relationship between phonetic learning and social interaction, suggesting that social interest may have a direct impact on language learning. This further sub-stantiates the

that social interest may have a direct impact on language learning. This further sub-stantiates the MMN as a neural correlate of broader language capacities with potential social implications. Another study replicated previous findings demonstrating diminished MMN amplitude in ASD subjects in response to unattended stimuli. However, when subjects were instructed to attend to the stimuli, the MMN for ASD subjects was similar to controls (Dunn et al. 2008). This indi-cates that auditory processing

ASD subjects was similar to controls (Dunn et al. 2008). This indi-cates that auditory processing that occurs auto-matically in typical individuals may require attention to be operative in ASD. This presents a significant disadvantage noting that direct atten-tional capacities are inherently limited, and thus processing capability may suffer in complex envi-ronments. This study also provided an explana-tion for discrepant findings in previous literature, noting that a prominent study that failed

for discrepant findings in previous literature, noting that a prominent study that failed to show MMN differences in ASD had procedurally instructed participants to attend to the stimuli. MMN may change over time in ASD. Two studies were conducted utilizing the same exper-imental paradigm with adults and children respec-tively, diagnosed with Asperger’s. MMN responses were recorded to changes in duration and pitch. Both samples demonstrated enhanced MMN to pitch changes. However, duration

in duration and pitch. Both samples demonstrated enhanced MMN to pitch changes. However, duration changes showed a diminished MMN in children and an enhanced MMN in adults (Lepisto et al. 2006, 2007). These findings imply that MMN may have a complex developmental course in ASD. Many studies revealed differences in hemi-spheric distribution in ASD as compared with control samples (Gomot et al. 2002; Jansson-Verkasalo et al. 2003; Kujala et al. 2007, 2010; Lepisto et al. 2006, 2007). As a trend,

Jansson-Verkasalo et al. 2003; Kujala et al. 2007, 2010; Lepisto et al. 2006, 2007). As a trend, these included enhanced responses over the right hemi-sphere and diminished responses over the left hemisphere. Whereas control groups often exhibited no hemisphere dominance for the MMN, ASD groups exhibited right hemisphere dominance (Kujala et al. 2007; Lepisto et al. 2006, 2007). These abnormal patterns of MMN lateral-ization may reflect impaired interhemispheric processing.

Future Directions Some of the difficulties in interpreting the multi-plicity of findings with regard to the MMN in ASD are likely related to varying diagnostic criteria across studies. This is an issue that affects ASD research across the board, given the etiolog-ical and clinical heterogeneity of ASD. Utilizing instruments that involve standardized behavioral observation and standardized interviewing, in conjunction with expert clinical judgment, can better constrain research populations

in conjunction with expert clinical judgment, can better constrain research populations ensuring more consistent ASD samples. Though increased amplitude and shorter latency are associated with greater discrimination, when an increase in amplitude is coupled with extended latency or, conversely, when a decrease in amplitude is coupled with shorter latency, the specific implication with regard to discrimination is unclear. Though differences in amplitude and latency in ASD manifest “abnormal

to discrimination is unclear. Though differences in amplitude and latency in ASD manifest “abnormal processing,” future research may be able to determine more precisely how variations in electrophysiological components relate to global processing. The MMN can be recorded in young infants reliably between 3 and 5 months. Some studies have even elicited MMN correlates in fetuses. As more specific clinical electrophysiological pro-files emerge, MMN may be a promising tool for revealing clinical

clinical electrophysiological pro-files emerge, MMN may be a promising tool for revealing clinical disorders early in development, leaving open the prospect of increasingly early intervention. Training and learning have been shown to improve MMN responsiveness. This may indi-cate an opportunity for intervention in clinical disorders. In ASD specifically, directed attention has been shown to positively impact the MMN (Dunn et al. 2008). Future research could focus on the evaluation of intervention

impact the MMN (Dunn et al. 2008). Future research could focus on the evaluation of intervention effects in clin-ical populations using the MMN as a marker. This may provide information that can be trans-lated into evidence-based intervention method-ologies, as well as general information about the nature of auditory processing deficits in these populations. Researchers have also begun exploring methods for assessing MMN at the single-subject level. Currently, the MMN provides a reliable tool

methods for assessing MMN at the single-subject level. Currently, the MMN provides a reliable tool for examining group differences in clinical populations. As this methodology pro-gresses, it may be able to reliably identify an individual’s auditory discrimination capacity. Such an electrophysiological marker could have useful implications for diagnosis and inter-vention in ASD.

**Misophonia** 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: Hatred of sound; Sound sensitivity  Definition Misophonia is characterized by an individual’s sensitivity to/negative reaction to a sound or sounds (Cavanna and Seri 2015). It can be observed in isolation or in combination with other disorders, like autism spectrum disorder. Unfortunately, research on the condition is rather limited and there is not yet agreement on how this phenomenon/condition is best conceptualized, i.e., as a condition in its own right or as a feature of other

is best conceptualized, i.e., as a condition in its own right or as a feature of other disorders. The condition is not yet recognized in official diagnostic systems. The term literally means “hatred of sound” and was first proposed in 2000 and noted the combination negative emotions/reactions to specific sound(s) as the hallmark feature (Cavanna and Seri 2015). Given the lack of consensus on the nature of the condition and its definition, the literature on this condition/phenomenon is rather

nature of the condition and its definition, the literature on this condition/phenomenon is rather limited. In some cases, the condition’s severity or presenta-tion presents a major problem for the individual, and various treatment strategies have been pro-posed, e.g., cognitive behavior therapy or expo-sure therapy (McGuire et al. 2015; Kamody and Del Conte 2017; Bruxner 2016). The sounds that trigger the negative reactions can be either loud or soft. In one study, the most commonly reported

trigger the negative reactions can be either loud or soft. In one study, the most commonly reported sounds relate to eating and/or the mouth, e.g., sounds of eating, chewing, whispering (Bruxner 2016). Understanding of the trigger sound(s) remains limited. Individuals with the condition may be quite aware that it is disruptive. Often attempts to avoid the sound triggers can lead to unantici-pated avoidance behaviors that further restrict interaction with others. Given the lack of consensus on

avoidance behaviors that further restrict interaction with others. Given the lack of consensus on the nature of the condition, there are no data, at present, on epidemiology, gender differences, and so forth. While, in some respects, clearly related to anxiety disorders, the fundamental nature of Misophonia remains to be established. As research on this condition/phenomenon continues, it is likely that there will be greater clarity on issues including (a) best approaches to definition, (b)

likely that there will be greater clarity on issues including (a) best approaches to definition, (b) clinical features and associations with other disorders, (c) epidemiology and differences in rates by gender, race, and so forth, and (d) frequent co-morbidities of the conditions.

**Mitochondrial Deficits/Disorders** Jonathan Kopel Texas Tech University Health Sciences Center (TTUHSC), Lubbock, TX, USA Synonyms: Organelle  Definition Mitochondria are the central hub for energy metabolism in the cell providing the main source of ATP and TCA intermediates for several ana-bolic and catabolic processes (Siddiqui et al. 2016). Mitochondrial dysfunction can occur due to genetic or biochemical abnormalities affecting ATP synthesis. Specifically, several reports showed

genetic or biochemical abnormalities affecting ATP synthesis. Specifically, several reports showed abnormalities in autism spectrum disorder (ASD) patients involved in phospholipid produc-tion (Siddiqui et al. 2016). Further analysis of N-acetyl-aspartate, a marker for mitochondrial dysfunction, showed elevations in the white and gray matter cortex of ASD patients (Siddiqui et al. 2016). Other studies examining the electron trans-port chain of mitochondria isolated from ASD patients showed

studies examining the electron trans-port chain of mitochondria isolated from ASD patients showed decreases in metabolic activity of several enzymes and transport complexes throughout the brain (Siddiqui et al. 2016). This dysfunction of enzymes and transport activity is believed to contribute to the increased reactive oxygen species and oxidative stress observed in ASD neurological studies. Several mutations associated with the electron transport chain, including complexes III, IV, and VII,

mutations associated with the electron transport chain, including complexes III, IV, and VII, showed decreased activity and expression in ASD patients. The results suggest global metabolic abnormalities within the mitochondria, and per-haps the cytoplasm may alter neuronal activity and connectivity within the brains of ASD patients.

**Mixture Modeling**  **MLD**  **Moban**  **Mobile Work Crew Model** Michelle Lestrud The Gengras Center, University of Saint Joseph, West Hartford, CT, USA Synonyms: Community work crew; Community-based work team; Enclave; Supported employment group; Work team

Definition A mobile work crew model follows the practice of placing together several individuals to work in the community as a team or “crew.” Typi-cally, the individuals have a disability and are accompanied by a nondisabled support person or job coach. This type of work group falls under the category of supported employment. The mobile work crews may work at various locations but often specialize in a specific area such as janitorial services, lawn care, mainte-nance jobs, etc. These jobs are

in a specific area such as janitorial services, lawn care, mainte-nance jobs, etc. These jobs are in the commu-nity but may not be integrated with employees outside the work crew and may not require competitive rates of production. The mobile work crews are often associated with an agency providing vocational or day services to people with autism. In some cases, individuals with autism may be able to learn needed vocational skills while on a mobile work crew to lead to a higher level of

be able to learn needed vocational skills while on a mobile work crew to lead to a higher level of employment or competitive employment.

**Mo¨bius Syndrome** 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: Moebius syndrome  Definition This very rare congenital disorder (perhaps 1 in 100,000 births) is characterized by facial paralysis and a lack of ability to move the eyes from side to side. This is a result of failure of normal develop-ment of the sixth and seventh cranial nerves. Sometimes, other facial nerves are also affected – if the eighth nerve is affected, hear loss is present as well. Abnormalities in other areas can include prob-lems with the chest wall and extremities. Given

well. Abnormalities in other areas can include prob-lems with the chest wall and extremities. Given the lack of facial expression, most individuals with the condition are assumed not to have normal intelligence, but this is not correct. The condition is named after the neurologist who described it in the last 1800s. Treatment is supportive in nature. The etiology of the syndrome remains unclear with some suggestion of genetic links as well as links to teratogenic drugs such as thalidomide. A

with some suggestion of genetic links as well as links to teratogenic drugs such as thalidomide. A few studies, mostly case reports and at least one case series, have suggested a potential increased risk for autism. The significance of this association remains unclear.

**Modeling** Cheryl Smith Gabig Department of Speech, Language, and Hearing Sciences, Lehman College/The City University of New York, Bronx, NY, USA

Synonyms: Example, demonstration; Representation  Definition Modeling refers to an intervention procedure that provides an example or explicitly demonstrates a verbal or social behavior targeted for intervention. The demonstration serves as a standard for imita-tion or comparison by the learner by providing an example of the structure or content of a targeted language or social behavior. The modeled demon-stration can be presented either verbally or visu-ally through pictures or videos. The

demon-stration can be presented either verbally or visu-ally through pictures or videos. The modeling procedure may take one of six forms: model-recast, model-prompt-imitation, aided modeling, interactive modeling, in vivo modeling, and video modeling.

*   Model-recast is a method that provides a model of the structural or semantic properties of language for the child by recasting a child’s utterance during discourse interaction. The recast/model supplies missing grammatical aspects or semantic relationships while maintaining the child’s central meaning. For example, if the child omits the auxiliary verb and present progressive tense marker when saying “doggie eat,” the adult recast or model would maintain the meaning but pro-vide the

when saying “doggie eat,” the adult recast or model would maintain the meaning but pro-vide the missing grammatical markers, as in “The doggie is eating.”

*   Model-prompt-imitation is an elicitation pro-cedure that presents a target language or social behavior and elicits the targeted behavior from the child in a model-prompt-imitation format. For example, if the target language behavior is the appropriate response to ques-tion forms, the clinician or adult may model the expected response and prompt the child to imitate as in “What is your name?” followed by the model “My name is Jack,” and then a prompt to imitate: Tell me: “My name is Jack.”

*   Aided modeling occurs during instruction in the use of an augmentative and alternative communication (AAC) device wherein the adult uses the AAC device as well as speech to demonstrate the expected communication output.

*   Interactive modeling facilitates language development in a socially interactive format. The adult follows the child’s lead and provides a verbal gloss of the actions and focused atten-tion to objects by the child. For example, if a child looks at or picks up an object, the adult verbalizes or glosses the child’s actions or attention focus by modeling the appropriate language, for example, “Ball,” “This is a ball.” If the child performs an action on the object, the adult would provide a

“Ball,” “This is a ball.” If the child performs an action on the object, the adult would provide a language model or gloss of the action, such as “throw ball,” “Jack is throwing the ball.”

*   In vivo modeling involves the real-life situa-tional observation of typical persons performing a task.
*   Video modeling involves a child viewing a video demonstration of a target behavior that serves as a model for imitation and comparison.

Modeling has been found to be an effective intervention technique for children and adolescents with autism, especially the use of model-prompt-imitation, aided modeling, in vivo modeling, and video modeling. Less is known regarding the use of the model-recast method in teaching verbal skills to children with autism spectrum disorders.

**Modified Checklist for Autism in Toddlers (M-CHAT)** Mieke Dereu Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium Synonyms: CHAT; Checklist for autism in toddlers; M-CHAT  Abbreviations AAP American Academy of Pediatrics ASD Autism spectrum disorder CESDD Checklist for Early Signs of Developmental Disorders ESAT Early Screening of Autistic Traits quesionnaire FUI Follow-up interview NPV Negative predictive value PEDS Parents’ Evaluation of Developmental Status

Follow-up interview NPV Negative predictive value PEDS Parents’ Evaluation of Developmental Status PPV Positive predictive value Se Sensitivity Sp Specificity  Description The Modified Checklist for Autism in Toddlers (M-CHAT; Robins et al. 1999a) is a screening measure developed to identify young children with an elevated risk for autism spectrum disorder (ASD) through parent report. This instrument is one of the most commonly used screening instru-ments for ASD in toddlers worldwide. The

is one of the most commonly used screening instru-ments for ASD in toddlers worldwide. The checklist was developed and validated for children between 16 and 30 months old. Parents are asked to answer 23 yes/no questions about the usual behavior of their child. Responses of parents indicating typical development are balanced. Children screen positive for ASD if they fail three or more items in total or if they fail two or more out of six critical items, derived from dis-criminant function

in total or if they fail two or more out of six critical items, derived from dis-criminant function analysis. These six critical items ask about the child’s interest in other chil-dren, response to name being called, following a point of the parent, own pointing and showing to indicate interest, and imitation (Robins et al. 2001b). In addition to the parent report, a follow-up interview (M-CHAT FUI; Robins et al. 1999b) was designed to ascertain responses of parents for screen positive

FUI; Robins et al. 1999b) was designed to ascertain responses of parents for screen positive children. Parents are asked to clarify the items failed by their child in a struc-tured format. To ensure presence or absence of specific behaviors, parents are asked to give some examples of these behaviors. In addition, detailed information about the frequency of the behaviors is elicited. Including this follow-up interview in the screening lowers the amount of false positive screens, without

this follow-up interview in the screening lowers the amount of false positive screens, without compromising the sensitivity of the instrument (see also the section on “Psycho-metric Data”). This interview can be conducted in person or over the phone (Robins and Dumont-Mathieu 2006; Robins et al. 2001b).

Historical Background The M-CHAT is an adaptation and extension of the Checklist for Autism in Toddlers (CHAT; Baron-Cohen et al. 1992; Baron-Cohen et al. 1996). The CHAT was originally designed to screen for autism, not ASD, in 18-month-olds. The child’s general physician or health visitor completes the checklist, for example during the 18-month routine check-up. The CHAT consists of two parts: nine parent questions (part A) and five observation items that have to be adminis-tered by trained

nine parent questions (part A) and five observation items that have to be adminis-tered by trained professionals (part B). For more details about this measure, see entry “CHAT.” The M-CHAT modified the CHAT into an instrument completely reliant on parent report, because this may be more accurate than a brief observation by a professional (Robins and Dumont-Mathieu 2006). The first nine items of the CHAT (part A) were included as such in the M-CHAT. In addition, 21 new items were formu-lated to

CHAT (part A) were included as such in the M-CHAT. In addition, 21 new items were formu-lated to compensate for the loss of the observation part (part B) of the CHAT, but also to broaden the signs of ASD included in the checklist. The authors of the M-CHAT wanted to identify a greater range of children on the autism spectrum, not solely children with autism. Based on prelim-inary analyses of the first 600 children, eight items were dropped because they lacked discriminant power or because

the first 600 children, eight items were dropped because they lacked discriminant power or because parents misunderstood their content. In addition, one item about social referencing was added, leading to the final 23 items in the checklist (Robins et al. 2001b). Since the development of the M-CHAT, the instrument has been translated into more than 30 languages, including Arabic, French, Dutch, German, Spanish, Portuguese, Chinese, and Jap-anese. The checklist itself, the follow-up inter-view,

Spanish, Portuguese, Chinese, and Jap-anese. The checklist itself, the follow-up inter-view, and the different translations are available for free download for clinical, research, and edu-cational purposes (see www.mchatscreen.com). For use with Chinese and Japanese children, some adaptations to the M-CHAT were made. For the Japanese version, the M-CHAT was trans-lated and some illustrations were added to the items about declarative pointing, showing, gaze following, and social referencing, in

added to the items about declarative pointing, showing, gaze following, and social referencing, in order to encourage caregivers to notice negative symp-toms (Inada et al. 2011). For Chinese children, Wong et al. (2004) combined the M-CHAT and CHAT into a new screening measure: the CHAT-23. This instrument incorporates a Chinese trans-lation of the 23 items of the M-CHAT (part A) and the five observation items of the CHAT (part B). The authors suggest using part A as a Level 1 screening

five observation items of the CHAT (part B). The authors suggest using part A as a Level 1 screening instrument for use in the general pop-ulation, followed by administration of part B as a Level 2 screening instrument for screen positive children on part A. For more details on the CHAT-23, see the entry “CHAT.”

Psychometric Data Discriminant Validity: Several studies have evaluated the psychometric properties of the M-CHAT as a screening instru-ment for ASD in toddlers. The original validation study included 1,122 children from a nonselected population and 171 high-risk children screened through early intervention service providers. All children were between 16 and 30 months old. There were 39 children identified with ASD in this sample: three from the unselected sample and 36 from the high-risk

identified with ASD in this sample: three from the unselected sample and 36 from the high-risk group. None of the children in this study who were evaluated after screening positive had an entirely typical development. Robins et al. (2001b) estimated the psychometric properties of the M-CHAT through discriminant function analysis classification based on known diagnoses of ASD before follow-up of the entire sample. The sensitivity (Se) was estimated at.87, the specificity (Sp) at.99, the positive

entire sample. The sensitivity (Se) was estimated at.87, the specificity (Sp) at.99, the positive predictive value (PPV) at.80, and the negative predictive value (NPV) at.99. They used this approach because calculation of Se and Sp depends on follow-up of both positive and negative screen children to ascertain diagnosis in all children and follow-up was still pending. Dumont-Mathieu and Fein (2005) reported estimates on the Se and Sp of the M-CHAT based on the first 940 children of the original

reported estimates on the Se and Sp of the M-CHAT based on the first 940 children of the original sample who were rescreened at age 4. This rescreen resulted in six possible missed cases. Se was estimated at.85 and Sp at.93. A study by Kleinman et al. (2008) showed that the PPVof the M-CHAT depends on the inclusion of the follow-up interview and on the sample of children to which it is applied. These authors screened a completely new sample of children between 16 and 30 months old: 3,309

These authors screened a completely new sample of children between 16 and 30 months old: 3,309 low-risk children from an unselected sample and 484 high--risk children from early intervention service pro-viders. For the total sample, the PPV after a positive screen on the M-CHAT was only.36. However, if this positive screen was also con-firmed by the follow-up interview, the PPV increased to.74. There were also some differences found in PPVs between the low- and high-risk groups. Without

There were also some differences found in PPVs between the low- and high-risk groups. Without follow-up interview, the PPVs were.11 and.60 for, respectively, the low- and high-risk group. When positive screens were con-firmed with the follow-up interview, the PPVs were.65 and.76 for, respectively, the low- and high-risk group.

Pandey et al. (2008) added 2,983 new children between 16 and 30 months old to the Kleinman et al. (2008) sample in order to compare the PPVs of younger (16–23 months old) versus older chil-dren (24–30 months old). In this study, all positive screen children were based on parent report and follow-up interview. In the high-risk sample, the PPV was.79 for the younger children and.74 for the older children. In the low-risk sample, the PPV was.28 for the younger and.61 for the older children.

children. In the low-risk sample, the PPV was.28 for the younger and.61 for the older children. Although the M-CHAT has been translated in many different languages, the validation of these translations is still pending. Some findings on the Arabic, French, Portuguese, Spanish, Sinhala, and Japanese version have been published (Canal-Bedia et al. 2011; Eldin et al. 2008; Inada et al. 2011; Losapio and Pondé 2008; Perera et al. 2009; Rogé et al. 2009), but these findings were mostly based on small

and Pondé 2008; Perera et al. 2009; Rogé et al. 2009), but these findings were mostly based on small high-risk samples. Two recent published studies form an exception. Inada et al. (2011) reported on the discriminant validity of the Japanese version of the M-CHAT in 1,187 low-risk children of 18 months old, of whom 20 were diag-nosed with ASD at age 3. These authors suggest a different cutoff of two or more failed items in total, at which the Se was estimated at.75, the Sp at.89, the PPV at.11,

or more failed items in total, at which the Se was estimated at.75, the Sp at.89, the PPV at.11, and the NPV at.99. Canal-Bedia et al. (2011) reported on the validity of the Spanish translation of the M-CHAT in two large samples, but the study lacked data on possible missed cases. Therefore, the Se and Sp cannot be estimated (reported Se was 1). The PPVs they reported were.35 for a first sample of 2,480 children, includ-ing 63 high-risk children recruited from early inter-vention service

of 2,480 children, includ-ing 63 high-risk children recruited from early inter-vention service providers, and.19 for a completely unselected sample of 2,055 children.

Item Analysis: In the initial validation study, all but two items discriminated well between children with and children without ASD. Only the item about enjoy-ment in being swung or bounced on the knee of the parent and the item asking parents if their child can walk cannot distinguish children with and without ASD (Robins et al. 2001b). Ventola et al. (2007) compared the scores of 195 children who screened positive on the M-CHAT between 16 and 30 months of age and who were subsequently

who screened positive on the M-CHAT between 16 and 30 months of age and who were subsequently diagnosed with either an ASD, a global developmental delay, or a develop-mental language disorder. Even when overall lan-guage level was controlled for, children with ASD could still be differentiated from children with other developmental disorders, based on their scores on four items: response to name, declara-tive pointing, imperative pointing, and following a point.

Reliability: Two studies reported on the internal consistency of the M-CHAT. Robins et al. (2001b) calculated a Cronbach’s alpha of.85 for the entire checklist and.83 for the six critical items. These results were replicated by Kleinman et al. (2008). They reported alpha’s of.85 and.84, respectively, for the entire checklist and the six critical items. Inada et al. (2011) looked at the interrater reli-ability of the Japanese translation of the M-CHAT by comparing the scoring of mothers and

reli-ability of the Japanese translation of the M-CHAT by comparing the scoring of mothers and fathers of a limited subsample of 24 children. The scoring results of these parent couples were highly corre-lated: Pearson’s r ¼ .93. In addition, they looked at the test-retest reliability by asking 22 mothers to fill out the M-CHATagain after on average 8 days. Again, scores on the M-CHAT were highly corre-lated: Pearson’s r ¼ .99.

Clinical Uses The M-CHAT has been available for both research and clinical use since the late 1990s. With the recent recommendations of the American Acad-emy of Pediatrics (AAP) to conduct population-wide screening for ASD at 18 months (AAP 2006), the use of the M-CHAT as a Level I screening instrument for ASD has been recommended by some. However, validation of the M-CHAT is still ongoing and longitudinal follow-up will have to shed light on possible missed cases to enhance the accuracy of

longitudinal follow-up will have to shed light on possible missed cases to enhance the accuracy of the esti-mates of sensitivity and specificity for the M-CHAT (see also Mawle and Griffiths 2006; Robins and Dumont-Mathieu 2006). Finally, val-idation of the different translations is still pending. Based on the current findings, when using the M-CHAT in clinical practice as a Level 1 screen-ing measure, one can expect many false positive screens, especially when used in unselected sam-ples and when

one can expect many false positive screens, especially when used in unselected sam-ples and when the user does not incorporate the follow-up interview in the screening. Therefore, Kleinman et al. (2008) suggested a higher cutoff for failing when screening in the general popula-tion or to combine the use of the M-CHAT as a Level 1 screening instrument with a Level 2 screening instrument or more in-depth parent interview and behavior observation for borderline cases, before a full-scale autism

in-depth parent interview and behavior observation for borderline cases, before a full-scale autism evaluation is instituted.

Different studies used the M-CHAT as a Level 2 screening instrument. For example, Dereu et al. (2012) used the Checklist for Early Signs of Developmental Disorders (CESDD; Dereu et al. 2010) as a Level 1 screening instrument in an unselected sample of 7,092 infants and toddlers attending day-care centers, combined with the M-CHAT as a Level 2 screening instrument for positive screen children on the CESDD or for children at-risk for ASD because of a delayed language development. They compared

the CESDD or for children at-risk for ASD because of a delayed language development. They compared the M-CHAT with the early screening of autistic traits questionnaire (ESAT) (Dietz et al. 2006; Swinkels et al. 2006) for a referred sample of 197 children between 16 and 30 months old based on the CESDD results and concluded that the discrimi-nant power of these screening instruments for ASD were comparable, although some differ-ences were found in the Se and the Sp of the different instruments.

although some differ-ences were found in the Se and the Sp of the different instruments. Glascoe et al. (2007) looked at combining a broadband developmental-behavioral screening test as a Level 1 screening instrument, the Parents’ Evaluation of Develop-mental Status (PEDS), with the M-CHAT as a Level 2 screening instrument. These authors advised to base referrals on three or more discrete types of concerns on PEDS, to reduce over-referrals by 70%, while maintaining high levels of sensitivity

of concerns on PEDS, to reduce over-referrals by 70%, while maintaining high levels of sensitivity (81%). However, Pinto-Martin et al. (2008) showed in their study that the PEDS mis-sed the majority of children who screened positive for ASD on the M-CHAT. They concluded that this supports the use of an ASD-specific tool for all children in conjunction with regular standard-ized developmental screening.

**Modified Checklist for Autism in Toddlers, Revised: Spanish Cultural Validation**
Ricardo Canal-Bedia1 and María Magán-Maganto2 1Clinical Psychology Department, Department of Personality, Assessment, and Psychological Treatment, Centro de Atención Integral al Autismo (INFOAUTISMO), University Institute of Community Integration (INICO), University of Salamanca, Salamanca, Spain

2Department of Personality, Assessment, and Psychological Treatment, Centro de Atención Integral al Autismo (INFOAUTISMO), University Institute of Community Integration (INICO), University of Salamanca, Salamanca, Spain

Definition The Modified Checklist for Autism in Toddlers, Revised – Spanish Cultural Validation is the Span-ish version of the M-CHAT-R/F (Robins et al. 2014), a parental report screening questionnaire developed to identify children between 14 and 30 months at risk of autism spectrum disorder (ASD). It is one of the best-known and most widely used ASD screening tools in the world, because it is concise, easy to administer, and available free of charge on the Internet

the world, because it is concise, easy to administer, and available free of charge on the Internet (https://mchatscreen.com/mchat-rf/translations/). It is normally used as a screening tool in the general population (screening level 1) but can also be used to identify signs of ASD in high-risk groups (such as a level 2 screener). The tool consists of a questionnaire with 20 yes/no questions, each of which includes examples to make it easier for parents to understand the questions, and a

each of which includes examples to make it easier for parents to understand the questions, and a follow-up interview (FUI) designed to verify the responses of parents who indicate suspected ASD. The questionnaire scoring system establishes three levels of risk according to the number of failed questions. If the questionnaire has two or fewer failed items, it is considered that there is no suspicion of autism; if the questionnaire has eight or more failed items, it is considered that there is a

of autism; if the questionnaire has eight or more failed items, it is considered that there is a high risk of ASD, and the case should be referred directly for a diagnostic evaluation; finally, if the questionnaire has between three and seven failed items, it is considered that there is a medium risk, and the follow-up interview (FUI) should be administered to clarify with the parents, in a struc-tured way, the failed items of their child. If, after the FUI has been administered, the

in a struc-tured way, the failed items of their child. If, after the FUI has been administered, the questionnaire has two or more failed items, the child should be referred for diagnostic evaluation. The FUI can be administered in person or by telephone, and its use is intended to improve the psychometric proper-ties of the tool and limit the costs of the screening program by trying to ensure fewer false positives.

Historical Background In Spain, interest grew in fostering early detection of autism since the end of the last century, when retrospective studies on early signs became more numerous. Already in the twenty-first century, the first published articles on early detection experi-ences (Baird et al. 2000; Baron-Cohen et al. 2000; Robins et al. 2001), along with articles on the crucial role of parents in identifying warning signs, studies on factors influencing delayed diag-nosis (Coonrod and Stone

in identifying warning signs, studies on factors influencing delayed diag-nosis (Coonrod and Stone 2004; Mandell et al. 2002; Mandell et al. 2005), and recommendations published by several professional organizations and consensus panels recommending systematic screening and early diagnosis (American Acad-emy of Pediatrics Committee on Children with and Disabilities 2001; Filipek et al. 2000; Johnson et al. 2007), prompted interest in adapting a spe-cific tool for early detection of autism in

et al. 2007), prompted interest in adapting a spe-cific tool for early detection of autism in Spain. It is in this context that in 2005 the health authorities of the autonomous region of Castilla y León (Spain) decided to implement a population-based, pilot ASD screening program (for a description of this program, see Garcia Primo et al. (2014)). The ASD screening program in Spain is administered by primary care pediatricians within the Well Baby Check-up Program, which in Spain is universal and

primary care pediatricians within the Well Baby Check-up Program, which in Spain is universal and free and includes regular stan-dardized tests that collect data on each child’s developmental milestones. From 2005 to 2014, the ASD screening program used the first 23-item M-CHAT questionnaire (Robins et al. 2001) validated and culturally adapted to Spanish by Canal-Bedia et al. (2011). During that 9-year period, more than 9,524 children between 18 and 36 months participated in screening (Garcia

9-year period, more than 9,524 children between 18 and 36 months participated in screening (Garcia Primo et al. 2014).

The Spanish version of M-CHAT has psycho-metric properties similar to those of the original version, with high sensitivity and specificity, but, like the original version, has high rates of false positives, that is, cases in which the result of the questionnaire recommends referral for a follow-up interview due to suspicion of autism that later turn out not to have an ASD. In order to streamline the M-CHAT process, The M-CHAT-R/F (Robins et al. 2014) was devel-oped with a focus on reducing

the M-CHAT process, The M-CHAT-R/F (Robins et al. 2014) was devel-oped with a focus on reducing false-positive cases without affecting the efficacy of the questionnaire. False positives can be a large hindrance to the health system, especially in the case of diagnosing ASD, as each case needs a lot of time and resources to evaluate. The way the questionnaire is scored was also made easier, thus facilitating its implementation on a populational level. From 2014 the M-CHAT-R/F Spanish version

facilitating its implementation on a populational level. From 2014 the M-CHAT-R/F Spanish version (Magán-Maganto et al. 2018) has replaced the 23-item M-CHAT and has been implemented in the same region of Spain. Including the Spanish version of the M-CHAT-R/F, a total of 16,149 children in the 14–36-month age range have been screened within the primary health-care sys-tem. The inclusion of M-CHATand M-CHAT-R/F in the Well Baby Check-up Program has facili-tated the work of pediatricians in

M-CHAT-R/F in the Well Baby Check-up Program has facili-tated the work of pediatricians in identifying risk signs of ASD, provided a way for families to express concerns about their children’s develop-ment by responding to the questionnaire, and allo-wed for coordination between diagnostic services and early intervention services.

Current Knowledge For the cultural adaptation process, the M-CHAT-R/F was translated and back-translated by two bilingual professionals and compared with the original version. In translating the questionnaire and the FUI, the necessary cultural adaptations were made specially to adjust the examples of each item so that they were clear and understand-able in the Spanish cultural context. Several pro-fessionals with expertise in child development assessment were also asked to judge the quality

pro-fessionals with expertise in child development assessment were also asked to judge the quality of the wording of the questions and examples in Spanish to describe the actions. Finally, 30 ran-domly selected families filled out the question-naire to check that there were no significant problems in understanding the questions and examples. In the validation process, 6,625 children aged between 14 and 36 months were screened. Their parents filled in the questionnaire at the pediatri-cian’s office

and 36 months were screened. Their parents filled in the questionnaire at the pediatri-cian’s office with their child when they attended for the routine checkup at 18 and 24 months. Also, in some cases, physicians administered the screening protocol before or after these regular visits due to family or professional concerns. The total number of positive cases was 54 (18 failed more than 8 items, indicating high risk; 32 failed 2 or more items after FUI (medium risk); and 4 were referred due to

indicating high risk; 32 failed 2 or more items after FUI (medium risk); and 4 were referred due to pediatrician con-cerns). Of those 54 positive cases, 39 (72%) com-pleted the entire assessment protocol. In addition, nine evaluations were administered to children referred for evaluation as possible false negatives. A total of 19 children were diagnosed with ASD (15 true positives and 4 false negatives). The other 24 children who tested positive on the questionnaire and did not receive a

negatives). The other 24 children who tested positive on the questionnaire and did not receive a diagnosis of ASD were diagnosed with other disorders or developmental delay and were classified as false positive for ASD. None of the positive screening cases that were evaluated had typical develop-ment, suggesting that if the M-CHAT-R/F ques-tionnaire gives a positive result, it is highly likely that the cases require some type of intervention, even if they do not have ASD.

Results of the M-CHAT-R/F Spanish valida-tion were similar to the English version, with sensitivity (Sen) of 0.79, specificity (Spe) of 0.99, positive predictive value (PPV) of 0.39, and negative predictive value (NPV) of 0.99. However, the prevalence was slightly lower in the Spanish sample. Some additional analyses were performed, taking into account the excluded cases (e.g., not answering the phone for the FUI, rejection to attend further assessments, etc.) in order to avoid

answering the phone for the FUI, rejection to attend further assessments, etc.) in order to avoid misrepresentation of the data sam-ple distribution. Estimations of the proportion of cases were made in function of the excluded cases in each stage of the screening procedure. These are the results from the general sample: Sen of

More Than Words Kelly Macy Department of Communication Sciences, The University of Vermont, Burlington, VT, USA

Definition More Than Words is a parent-based social-pragmatic intervention program for children with autism spectrum disorders (ASD). It includes education and social support for parents and early language intervention for children with ASD under the age of 5. The program is led by a Hanen-certified speech-language pathologist (SLP) and aims to help parents learn more about communication and, in turn, support their children in increasing their language and communication skills.

Historical Background The Hanen Centre is a Canadian charitable orga- nization that was founded in 1975 by Ayala Hanen Manolson to increase knowledge and training of adults to help children become more effective communicators. More Than Words was adapted from another Hanen program, It Takes Two to Talk, to help meet the needs of parents and their children on the autism spectrum. The parent guidebook was written by Fern Sussman, a speech-language pathologist, and was published in 1999 by the

was written by Fern Sussman, a speech-language pathologist, and was published in 1999 by the Hanen Centre in Toronto, Ontario (The Hanen Centre 2007).

Rationale or Underlying Theory The goal of this program is to “empower parents to become the primary facilitator of their child’s communication and language development thereby maximizing the child’s opportunities to develop communication skills in everyday situa- tions” (The Hanen Centre 2007). More Than Words reflects a family-centered model of inter- vention. This program believes that since the par- ent or caregiver is the most important and constant element in the child’s life, they have

the par- ent or caregiver is the most important and constant element in the child’s life, they have an invaluable opportunity to provide consistent interventions in a natural setting to assist their children in experiencing meaningful interactions. A social-pragmatic theory of language acquisi- tion is the theoretical foundation for More Than Words, asserting that the development of commu- nication occurs in the context of the interaction between the child and the important adults in his or her

occurs in the context of the interaction between the child and the important adults in his or her life. Strategies taught in the program are intended to help parents become more responsive to their children’s communication attempts in order to facilitate their language skills. Parents also learn ways to manipulate the environment to increase joint attention and the motivation to communicate.

Goals and Objectives The More Than Words program outlines three main objectives for parents in helping to support their children’s communication skills: parent education, early language intervention, and social support for parents (The Hanen Centre 2007). As part of the parent education component, parents develop a better understanding of their child’s strengths and challenges by learning about their child’s learning style and sensory preferences. They also learn about basic concepts relating

their child’s learning style and sensory preferences. They also learn about basic concepts relating to language and com- munication and what stage of communication their child is in. This helps them to set goals and recog- nize communication attempts. The second objective of More Than Words is for parents to carry out early communication and language intervention. The Hanen-certified speech-language pathologist (SLP) works collab- oratively with parents to develop goals and imple- ment

pathologist (SLP) works collab- oratively with parents to develop goals and imple- ment responsive strategies that can be applied to interactions with their child across a variety of contexts. This is a flexible process and is intended to become a consistent, yet natural part of the day- to-day exchanges between the parent and child. As part of this intervention, parents video-record interactions and strategy implementation with their child. The SLP then reviews the video with the parents and

and strategy implementation with their child. The SLP then reviews the video with the parents and provides feedback to help increase their awareness of their interactions along with the communicative behaviors demonstrated by their child. The SLP facilitates the parents’ meta- cognitive thinking in the video review to encour- age their consistent use of the new strategies. The third objective is to provide social support for parents, who are at greater risk for fatigue, frustration, depression,

provide social support for parents, who are at greater risk for fatigue, frustration, depression, and anxiety than parents without a child with developmental disabilities. Support within this context is valuable because it comes from a professional who understands the unique strengths and challenges of their child, as well as from other parents in the group who can empathize and share experiences.

Treatment Participants More Than Words was designed for parents and their children under the age of 5 with ASD. It can be used with children who are verbal or nonverbal.

Treatment Procedures The program is led by a Hanen-certified SLP and is offered to groups of up to eight families at one time. There are three major components of this program. First, there is a preprogram assessment and baseline video recording of an interaction between the parent and child. Next, parents par- ticipate in seven sessions of group training, total- ing a minimum of 17.5 h. These sessions are led by the SLP and include discussion, PowerPoint presentations, and video clips that aim

are led by the SLP and include discussion, PowerPoint presentations, and video clips that aim to help parents learn about early communication and lan- guage, how to manipulate the environment to help their child communicate, identify their child’s stage of communication, and how to set realistic communication goals. The parents’ interactions with their children are video recorded, and three of these recordings are reviewed with the SLP. As part of the video feedback sessions, the parent

of these recordings are reviewed with the SLP. As part of the video feedback sessions, the parent observes and then describes the strategies they implemented with their child. The SLP probes parent understanding of what was observed and how what a parent did either facilitated or failed to facilitate communication change. The SLP pro- vides coaching to the parents, based on the strat- egies taught during the parent education sessions. The program is supported by a guidebook, DVD, and PowerPoint

during the parent education sessions. The program is supported by a guidebook, DVD, and PowerPoint slides with video clips.

Efficacy Information This program seeks to target the communication challenges that are present in children with autism spectrum disorders. The guidebook provides illus- trations and step-by-step examples, giving parents a readable and easy to understand resource with opportunities to practice what they learn in the context of everyday activities. Intervention strate- gies used in this approach, including modeling, reinforcement, and imitation, are commonly used best practices in early

including modeling, reinforcement, and imitation, are commonly used best practices in early education and speech- language therapy and are directly related to the individual child’s communication goals. The video-recorded interactions between the child and parent are periodically reviewed by the certified SLP, ensuring that the strategies are implemented in an effective and consistent manner. Two studies have examined the effectiveness of More Than Words for families and children with ASD. The

studies have examined the effectiveness of More Than Words for families and children with ASD. The first examined the facilitation of parental understanding of ASD and the social communication of their children following imple- mentation of the More Than Words program (McConachie et al. 2005). Results indicated that parents increased their use of facilitative strategies and children with ASD increased their vocabulary size. A second study found similar results for three families of children

their vocabulary size. A second study found similar results for three families of children 2.8–3.2 years of age with parents increasing their use of responsive strate- gies and children increasing their vocabulary (Girolametto et al. 2007).

Outcome Measurement A number of studies provide empirical evidence demonstrating positive outcomes of a social- interactionist intervention for children with ASD (Chapman et al. 1986; Duchan 1989; Mirenda and Dollennan 1986). There is also a recent body of literature that supports this type of intervention being successfully carried out by parents (Aldred et al. 2004; Mahoney and Perales 2003). Two published studies specifically examine the effi- cacy of More Than Words. The first was a con-

Two published studies specifically examine the effi- cacy of More Than Words. The first was a con- trolled trial measuring the effectiveness of parent training on the use of facilitative interaction strat- egies to enhance the communication skills and behaviors of their children (McConachie et al. 2005). This quasi-experimental study included 26 children and parents in an experimental group and 25 children and parents in a control group. Parents in the experimental group participated in the More

children and parents in a control group. Parents in the experimental group participated in the More Than Words training program. The results showed a measureable effect on both the parents’ and their children’s communication skills. The parents of children diagnosed with ASD showed an increase in responsiveness. The children whose parents attended More Than Words had significantly greater vocabulary size than those in the control group, as measured by parental report on the MacArthur-Bates

size than those in the control group, as measured by parental report on the MacArthur-Bates Commu- nicative Development Inventory (CDI) (McConachie et al. 2005). The CDI is a frequently used measure of word and gesture comprehension and word and sentence production that is used to assess outcomes following the More Than Words program. Another study examined the social interaction of three preschool children with ASD following their mothers’ participation in More Than Words (Girolametto et al.

children with ASD following their mothers’ participation in More Than Words (Girolametto et al. 2007). This was a multiple case study design that aimed to extend the previous study by using microanalytic coding procedures on the recordings of parent–child interactions. The results found that mothers increased their use of spontaneous interaction strategies and their children demonstrated increased vocabulary development and social interaction (Girolametto et al. 2007).

Qualifications of Treatment Providers The More Than Words program is led by a certi- fied speech-language pathologist who has com- pleted a specialized training by the Hanen Centre. First, the SLP needs to be trained in the It Takes Two to Talk program. Then, they can complete the 3-day, intensive, small-group training on More Than Words, led by a Hanen instructor.

See Also ▶Hanen Approach ▶Language Acquisition  Moro Reflex Gianluca Esposito Nanyang Technological University, Wako, Saitama, Singapore University of Trento, Rovereto, TN, Italy Kuroda Research Unit, RIKEN Brain Science Institute, Wako-shi Saitama, Japan  Synonyms Startle reflex  Definition The Moro reflex, also known as the startle reflex, was initially described by the Austrian pediatri- cian Ernst Moro (1874–1951). It represents one of the infantile reflexes, and it may be observed since birth

Moro (1874–1951). It represents one of the infantile reflexes, and it may be observed since birth in all newborns up to 5 months of age. The reflex is triggered when (1) a baby’s head falls backward or quickly changes position and/or (2) the baby is startled by an unexpected loud noise. The reflex causes the baby initially to extend the neck and spread out widely the arms and legs (abduction) and then pull the arms back in a clasping motion (adduction). These move- ments are sometimes associated

pull the arms back in a clasping motion (adduction). These move- ments are sometimes associated with cry. The Moro reflex, as well as other infantile reflexes (e.g., the grasping reflex), is considered a residual behavior from when nonhuman primates clung to their mothers swinging through the trees (Thies and Travers 2001). The absence, persistence, and/or exacerbation of the Moro reflex in childhood and adulthood is generally associated with profound disorders of the motor system (e.g., cerebral

and adulthood is generally associated with profound disorders of the motor system (e.g., cerebral palsy). The assessment of the Moro reflex is carried out by pediatricians to evaluate the integration of the central nervous system in early infancy. As early primitive reflexes, such as the Moro reflex, are gradually extinguished at around 5 months of age, research in this area in the ASD population is very limited. A retrospective study by Teitelbaum et al. (2004) suggested that infants later

is very limited. A retrospective study by Teitelbaum et al. (2004) suggested that infants later diagnosed with ASD show abnormal move- ment patterns that can be interpreted as primitive reflexes “gone astray”; that is, some reflexes are not extinguished at the appropriate age in devel- opment, whereas others fail to appear when they should. More empirical research is needed to spe- cifically investigate the development of the Moro reflex in the ASD population.

Morocco and Autism Ismail El Hailouch School of Public Health, Child Study Center, Yale University School of Medicine, New Haven, CT, USA

Historical Background As the only country in North Africa that was able to conserve its political stability, Morocco has garnered a stellar reputation amongst foreign investors. The growing interest in the Moroccan kingdom by business leaders has undoubtedly contributed to its economic growth over the past decade, which further embellished the country’s reputation. In fact, the country ranked 68th out of 190 nations on the Doing Business 2017 survey. However, behind the country’s growing

68th out of 190 nations on the Doing Business 2017 survey. However, behind the country’s growing success lie many striking weaknesses in some of its most vital sectors. Moroccan education, for instance, has been controversial for a long time and remains a focus of political debate. After Morocco’s inde- pendence in 1956, the country’s educational sys- tem has been suffering from numerous challenges. Healthcare is a sector that is unarguably under- developed. The quality of care provided and the

Healthcare is a sector that is unarguably under- developed. The quality of care provided and the serious lack of staff and resources are a challenge. There are even more challenges for psychiatric care. While Morocco is ahead of its neighboring countries when it comes to mental health policy, the rules are rarely enforced. The lack of trained providers is another challenge.

The diagnosis and management autism has not been a topic of interest until recently. Autism is considered a “disability” in Morocco and polices and legislation focus more globally on disability than on autism per se. The main laws that have been issued in Morocco to protect disabled people (including individuals with autism spectrum disorder) have been the following:

1. Law 92-07 concerning social protection of disabled people – adopted in 1993. 2. Law 03-10 relative to accessibility in addition to a certain number of decrees about the appli- cation of laws issued in 2003.
3. Several decrees following the previous laws that urge the applications of laws.

3. Several decrees following the previous laws that urge the applications of laws.
However, despite the activeness of the govern- ment in issuing these laws to protect the rights of disabled people, there has not been much improvement made in the field. This reflects the lack of resources to implement the issued laws, the limited emphasis on inclusion of people with dis- abilities, and issues of lack of acceptance – all factors that contribute to a certain extent to per- petuating disability.

In 2004, a National Disability Survey revealed some quite shocking numbers about the case of disabilities in Morocco.
* One million and a half Moroccan (5.12%) live with a disability, and that on average, a house- hold of four people counts at least one disabled person.
* One out of five disabled people in Morocco never go to a specialized institution.

* One out of five disabled people in Morocco never go to a specialized institution.
* Only 1% of disabled people in Morocco benefit from health insurance. * More than 70% of disabled people don’t have any level of instruction. * The rate of schooling amongst disabled people in Morocco is of only 32.4% as opposed to a 92.6% among the nondisabled.

* 88.6% of disabled people of age above 15 have no professional activity. * The poverty rate among the disabled is multi- ple times higher than that amongst the nondisabled.

Since the release of this report in 2004, the government has been active in terms of social protection legislations. Attempts have been made to provide obligatory medical insurance; medical assistance policy and labor legislation has been enacted. The Moroccan government has acted to protect the rights of people with disabilities and these efforts occur in five main fields: legal capac- ity, education, institutionalization, women, and disability. In 2008, the government elaborated the project of

institutionalization, women, and disability. In 2008, the government elaborated the project of law 62-09 which is meant to consolidate the rights of disabled people which have been achieved through a national conference in 2008, followed by four regional meetings. Unfortu- nately implement of this has been difficult. The adoption of 2011 constitution and through the high orders of King Mohamed 6 has encouraged adoption of this law.

Legal Issues and Mandates for Service In a recent legislative effort by the Moroccan parliament intended for the protection and advancement of persons with disabilities, an ini- tiative known as the Draft Framework Law or the Draft Law 97.13 was adopted, marking the first legislation addressing the rights of the disabled to be considered by the Moroccan parliament since it ratified the International Treaty on Disability Rights in 2009. Although hopeful for the future of disabled Moroccan

Treaty on Disability Rights in 2009. Although hopeful for the future of disabled Moroccan citizens, the draft was met with much criticism, particularly from the Human Rights Watch. Disabled citizens of Morocco have often been treated as objects of charity as opposed to equal citizens, which has inevitably led to an environ- ment of discrimination and stigmatization. Many see this draft law as an opportunity to initiate a large-scale change in the perception of disabilities in Morocco, but as it

to initiate a large-scale change in the perception of disabilities in Morocco, but as it stands, the Draft Framework Law maintains outmoded perceptions of disabil- ities and in actuality, places even more restraints on the rights of disabled persons. Morocco’s recent signing of the International Human Rights Treaty, which established the right of disabled persons outlined in the Draft Frame- work Law as below the international standard, preceded the consideration of the Draft Frame- work Law.

Law as below the international standard, preceded the consideration of the Draft Frame- work Law. In a letter to the Moroccan parliament, the Human Rights Watch noted the many flaws present in the current Draft Framework law, among which includes the absence of a clear establishment of the right to education for the disabled due to the segregation of students with special needs with students in regular classrooms, which further amplifies the societal disassociation of disabled persons with the

regular classrooms, which further amplifies the societal disassociation of disabled persons with the general population. This leads many parents to withdraw special needs students from school. In their letter, the Human Rights Watch demanded proper accom- modations in educational settings for special needs students in Morocco. In addition, the gen- eral Moroccan population does not adhere to the Draft Framework Law due to a lack of awareness, and certain initiatives should be put in place in

Draft Framework Law due to a lack of awareness, and certain initiatives should be put in place in order for the law to be as effective as possible.

Current Treatments and Treatment Centers According to Soumia Amrani, the vice president of Moroccan Collection for Promoting Handicap Rights, resources and treatment centers for dis- abled persons are readily available in Morocco, but are grossly overpriced and unaffordable for most Moroccan families, especially given the increasing unemployment rate. However, the pro- fessional disciplines necessary for the treatment and diagnosis autism are relatively new in Morocco. Starting in the 1980s,

for the treatment and diagnosis autism are relatively new in Morocco. Starting in the 1980s, and especially after 2000, Moroccan parent-activists have been reaching out to foreign experts in order to change the status quo. They have taken their lead from the Anglo-American Neurocognitive behavioral model of the treatment and diagnosis of autism, rather than the French psychoanalytic one. Moroccan activists have been focusing on raising autism awareness, lobbying government agen- cies, and

activists have been focusing on raising autism awareness, lobbying government agen- cies, and establishing the proper infrastructure required for the identification and education of autistic children. Recently, as part of the National Initiative for Human Development (INDH), King Mohammad VI inaugurated the “Ashourouk” Care Center for Children with Autism, which can enroll up to 100 children, in order to ensure that children with autism and special needs are provided with adequate educational

order to ensure that children with autism and special needs are provided with adequate educational and social integration. The king noted that among the themes outlined by this initiative was assisting those with special needs in preserving their dignity and preventing them from falling into extreme poverty or isolation. Although much progress has been made in recent years, Morocco lags behind European countries with respect to providing resources a care for autistic children.

Overview of Research Directions Unfortunately, the majority of ASD research has been conducted in the United States, and this commitment to provide accommodations and understand people with this disorder has not been equally reflected in other countries, such as Morocco. Because of this, parents and families of individuals with autism have been pushed to establish start-up organizations with the sole pur- pose of providing resources and care for individ- uals affected with autism. These

the sole pur- pose of providing resources and care for individ- uals affected with autism. These start-up organizations are working with larger, interna- tional organizations in an attempt to advance the understanding of those affected with autism in Morocco. One start-up, in particular theAssociation Amal pour Enfants aux Benzoins Specifiques Mentaux (A.A.E.B.S.M), was founded by Moroccan activists for disability rights – many of whom had a relative affected by the disorder – and is currently

for disability rights – many of whom had a relative affected by the disorder – and is currently centered in Casa- blanca. The primary goal of this organization is to provide support for individuals and families affected by ASD by improving public perception and educating the general public about ASD. Along with local organizations, larger interna- tional organizations, such as Autism Speaks, are dedicated to providing care and support for those affected by ASD and have similar objectives to

dedicated to providing care and support for those affected by ASD and have similar objectives to locally run organizations. Autism Speaks has recently began an initiative in Morocco dedicated to providing effective resources to Moroccan indi- viduals and families affected by ASD. However, the incomplete analysis of the resources available in the country has been an obstacle and as a result, Autism Speaks has partnered with students from Worcester Polytechnic Institute in a project designed to

Speaks has partnered with students from Worcester Polytechnic Institute in a project designed to collect and analyze data regarding treatment and education options currently available to autistic children in Rabat, Morocco. The analysis and conclusions of this study will be made avail- able to parents of autistic children in Morocco and will hopefully assist in future projects aimed to advance autism treatment in Morocco.

Overview of Training Historically, Moroccan psychiatry has been heavily influenced by French psychoanalysis. In the 1980s and 1990s, the very first child psychia- trists in Morocco received specialized training in France, since at the time, there were no training programs for child psychiatry in Morocco. This psychoanalytical approach to psychiatry proved to be ineffective, as many of the children who were treated by these psychiatrists were later admitted into adult psychiatric hospitals. The

who were treated by these psychiatrists were later admitted into adult psychiatric hospitals. The year 2008 marked a significant advancement in the field of child psychiatry in Morocco, with the opening of two new child psychiatry departments in Casablanca and Salé, pioneering the first child psychiatry training programs in Morocco, which distanced itself from the usual psychoanalytic approach, focusing instead on a biological approach. In fact, over the past couple of decades, Moroccan psychiatry

instead on a biological approach. In fact, over the past couple of decades, Moroccan psychiatry has generally been moving away from psychoanalysis and gearing towards a more biologically based psychiatry. Major psychiatric hospitals in Morocco have been operating in a style which uses international scientific consensus of the DSM or ICD diagnoses while promoting psychotherapy as well as behav- ioral and cognitive approaches. In general, the younger generation of psychiatrists in Morocco takes an

and cognitive approaches. In general, the younger generation of psychiatrists in Morocco takes an “eclectic” approach to psychiatry, as many were trained in psychoanalytic theory and as a result see some benefit in thinking psychody- namically; however, they were exposed to neuro- biology and pharmacology and believe that cognitive and behavioral therapy play a role in the treatment of mental illness and developmental disorders. They also tend to view the treatment methods of the previous

illness and developmental disorders. They also tend to view the treatment methods of the previous generation of French and Moroccan psychiatrists as damaging and counterproductive.

See Also ▶Autism Speaks ▶Egypt and Autism ▶Sub-Saharan Africa and Autism  Mortality Svend Erik Mouridsen Child and Adolescent Psychiatry Centre, Bispebjerg University Hospital, Copenhagen, Denmark

Definition The term “autism” is used in this entry to describe all autism spectrum disorders, which include the various types of pervasive developmental disor- ders according to DSM-IV (American Psychiatric Association [APA] 2000) and ICD-10 (World Health Organization [WHO] 1992). The life expectancy of people with autism is of interest to parents, health professionals, and ser- vice providers concerned with these peoples’ life- time needs. Mortality information that includes the causes of

concerned with these peoples’ life- time needs. Mortality information that includes the causes of death is important as it can help parents and professionals focus on reducing asso- ciated risks and ultimately the rate of mortality among people with autism.

Historical Background Occasional deaths have been reported in all gen- eral follow-up studies of individuals with autism (Ballaban-Gil et al. 1996; Billstedt et al. 2005; Fombonne et al. 1989; Howlin et al. 2004; Kobayashi et al. 1992; Larsen and Mouridsen 1997). Causes of death include traffic accidents (Fombonne et al. 1989; Larsen and Mouridsen 1997); unrecognized volvulus in a woman in a long-term psychiatric institution (Larsen & Mouridsen); status epilepticus (Howlin et al. 2004); and

psychiatric institution (Larsen & Mouridsen); status epilepticus (Howlin et al. 2004); and cases of drowning, pneumonia, and complications arising from long-term psychotro- pic medication (Ballaban-Gil et al. 1996). However, systematic studies dealing with mor- tality and causes of death in autism are rare. There are difficulties in obtaining an adequate sample size to calculate specific risks, in studying samples over a suitable time span, and in establishing the cause(s) of death.

Current Knowledge Standardized mortality ratio (SMR) is frequently used to measure excessive mortality. The SMR is the quotient of the observed to the expected num- bers of deaths, and an SMR of 1 indicates that the observed number of deaths is no different from what would be predicted for the general popula- tion: An SMR value greater than 1 indicates that the observed mortality exceeds expectations in the group under study. Only three systematic follow-up studies spe- cifically dealing with

in the group under study. Only three systematic follow-up studies spe- cifically dealing with mortality and causes of death in individuals with autism have been published so far. Shavelle et al. (2001) and Pickett et al. (2006) reported mortality and causes of death in 13,111 people with autism who were receiving services from the California Department of Developmental Services between 1983 and 2002. The overall SMR was 2.4, indicating a mortality rate more than twice as high as for the general

The overall SMR was 2.4, indicating a mortality rate more than twice as high as for the general population. The increase in mortality was larger in females than in males. Mortality was associated with mental retardation with an SMR of 3.1 for participants with moderate, severe, or profound retardation, whereas the SMR was 1.4 for individuals with no or only mild mental retar- dation. Epilepsy was strongly associated with death risk. SMR was 36.9 in participants with epilepsy and moderate,

was strongly associated with death risk. SMR was 36.9 in participants with epilepsy and moderate, severe, or profound men- tal retardation against 22.6 in those with no or mild mental retardation. Suffocation (SMR ¼ 51.4 and 5.7, respectively) and drowning (SMR ¼ 13.7 and 3.9, respectively) were also noted to be frequent specific causes of death and, like epilepsy, associated with the level of cogni- tive impairment. Similar results were obtained in a Danish study (Isager et al. 1999; Mouridsen

tive impairment. Similar results were obtained in a Danish study (Isager et al. 1999; Mouridsen et al. 2008) in which an overall SMR of 1.9 was reported in a nationwide cohort of 341 individuals with autism (average age 43 years) observed between 1960 and 2007. Again, the SMR was particularly high in females. Epilepsy (SMR ¼ 35.0) and infectious diseases were among the most common causes of death. Epi- lepsy was notably marked in deceased females; five of the eight deceased females had epilepsy.

Epi- lepsy was notably marked in deceased females; five of the eight deceased females had epilepsy. Different kinds of infectious diseases (meningitis, pneumonia, appendicitis) were associated with death in seven individuals. In a Swedish community-based study of 120 individuals with autism, mean age 33.2 years, Gillberg et al. (2010) found an overall SMR of 5.6. They also noted that the mortality rate was particularly high in females. Associated medical diseases (including epilepsy with

rate was particularly high in females. Associated medical diseases (including epilepsy with cognitive impairment) and accidents accounted for most of the observed causes of deaths.

Prevention efforts to decrease mortality in people with autism need to address the conditions that are the immediate causes of death (i.e., infec- tious diseases, epilepsy, and accidents). How- ever, the behavioral characteristics that define autism often make care difficult and can lead to exacerbations in the state of somatic illness or diagnostic delay, eventually leading to death- causing illness (Larsen and Mouridsen 1997; Mouridsen et al. 2008). Assessing pain and dis- comfort in a

illness (Larsen and Mouridsen 1997; Mouridsen et al. 2008). Assessing pain and dis- comfort in a cognitively impaired, nonverbal patient is difficult, and of paramount importance is the involvement of the parent(s) or other care providers, if available. The best pain assessment by proxy is that provided by caregivers or family members who know the patient well. Only they can identify changes from a patient’s base line behavior that may signify pain and discomfort. Patients may be uncooperative

a patient’s base line behavior that may signify pain and discomfort. Patients may be uncooperative or combative if they do not understand the need for help. It is important to realize that many people with autism react badly to any change in their environment, and therefore, a visit to a general practice or a hospital can be very alarming for them, in partic- ular, if an unplanned acute hospital admission is necessary (Scarpinato et al. 2010; Souders et al. 2002). In some patients, conventional

is necessary (Scarpinato et al. 2010; Souders et al. 2002). In some patients, conventional peri- and postoperative management is impossible and alternative strategies are needed (Dell et al. 2008; Van Der Walt and Moran 2001). Likewise, venipunctures, intravenous insertions, and initia- tion or change of medical treatment can be diffi- cult to carry through. It is also noteworthy that Williams et al. (2000) found that 62% of parents reported difficulty giving medication to their chil- dren with

al. (2000) found that 62% of parents reported difficulty giving medication to their chil- dren with autism. An association between autism and epilepsy has been consistently reported, and the literature presents a wide range of co-occurrence estimates from 5% to 46% (Spence and Schneider 2009). These authors also report that more severe intel- lectual disability is associated with greater rates of epilepsy. Considering the high prevalence of epilepsy in autism, it is therefore important to

of epilepsy. Considering the high prevalence of epilepsy in autism, it is therefore important to suspect the comorbidity of epilepsy in every individual presenting with autism. It follows that understanding the needs of this group is particularly important within any major epilepsy service. Since epilepsy is strongly associated with death risk, careful monitoring of anticon- vulsant treatment is essential in those individuals with a concomitant occurrence of autism and epilepsy. However, the

essential in those individuals with a concomitant occurrence of autism and epilepsy. However, the clinical identification of seizures may be difficult in some cases. The diagnosis of partial complex seizures, in partic- ular, can be complicated by the presence of atyp- ical body movements and behavioral patterns often seen in association with autism (Bauman 2010). Obtaining a high-quality EEG can also be difficult, and effective communication usually has to be through a caregiver.

Since accidents are often avoidable, special attention should be paid to the safety of commu- nity surroundings. In the Mouridsen et al. (2008) study, two participants, who both lived in special- ized institutions for autistic people, managed to swallow dangerous objects and choke on them during an unsupervised period. According to the standards of the caregivers, the two patients should never be left unsupervised. As the rates of autism diagnoses increase (Rutter 2005), it becomes more and

be left unsupervised. As the rates of autism diagnoses increase (Rutter 2005), it becomes more and more imper- ative for health care providers in any setting – family, institutions, and primary or acute care – to understand the unique challenges of people with autism. The findings published so far under- score the importance of maintaining sufficient competence levels in the fields of internal medi- cine and neurology within the autism care system to recognize and properly manage somatic as well

cine and neurology within the autism care system to recognize and properly manage somatic as well as neurological diseases. As there is little information about the best practice for providing care to people with autism in institutional or hospital settings, it is important to develop nurs- ing standards that address care for people with autism.

Future Directions To conclude, mortality is increased in people with autism, and individuals with diminished cognitive functioning or epilepsy are at particularly high risk of a reduction in life expectancy. However, increased understanding of the most common causes of death can help parents and other care- givers focus on reducing risk and, ultimately, the rate of mortality among people with autism.

Motivating Operation Amanda P. Laprime The Center for Children with Special Needs, Glastonbury, CT, USA University of Rochester Medical Center, Rochester, NY, USA  Definition Motivating operations (MO) is a general term to describe antecedent events which momentarily alter the effects of a reinforcing or punishing consequence, and therefore alter the future fre- quency of behavior related to that consequence. Motivating operations alter the effectiveness of reinforcers and punishers in two

that consequence. Motivating operations alter the effectiveness of reinforcers and punishers in two ways, which designates different classifications of MOs. Establishing operations (EO) increase the effec- tiveness of a consequence (see ▶“Establishing Operations”), and abolishing operations (AO) decrease the reinforcing or punishing effec- tiveness (see ▶“Abolishing Operations”) (Laraway et al. 2003). The term MO is important because it refers to “not only how much someone wants something, but

The term MO is important because it refers to “not only how much someone wants something, but how hard they will work to get it” (Langthorne and McGill 2009, p. 22).

Historical Background Establishing operation was a term originally coined by Keller and Schoenfeld (1950) to describe a series of motivational events and their effect on behavior. Since, the designation, concep- tualization, and distinctions of MOs have evolved considerably. Moving from the term Establishing Operation to Motivating Operation: Researchers in the field of behavior found that the term EO was limited as it only included events resulting in the relative increase in the effectiveness

EO was limited as it only included events resulting in the relative increase in the effectiveness of a consequence; discarding those variables which decreased the value of a consequence. While the inherent limi- tations to this term were recognized (Michael 1982, 1993, 2000), it was deemed cumbersome to have different terms to describe each operation. More recently, there has been a push to utilize the general term, MO, and distinguish between EOs and AOs based on their relative effects on

the general term, MO, and distinguish between EOs and AOs based on their relative effects on conse- quences and behavior (Laraway et al. 2003). For the remainder of this entry, EO will describe only variables that increase the reinforcer/punisher effectiveness, AO will denote only events resulting in the decreased reinforcer/punisher effectiveness, and MO will denote the general class of variables that alter the effectiveness of such consequences. The designations are important due to the

that alter the effectiveness of such consequences. The designations are important due to the essential role that all MOs, including both EOs and AOs, have on the understanding of human behavior. The current conceptualization of MOs has been found to be important in the role of reinforcing or punishing consequences for behav- ior. Importantly, interventions to address chal- lenging behavior and skill deficits in individuals with autism spectrum disorders (ASD) have benefited from an analysis of

skill deficits in individuals with autism spectrum disorders (ASD) have benefited from an analysis of motivating opera- tions as an independent variable.

Role in operant conditioning: Historically, operant behavior has been conceptualized as a three-term contingency (Antecedent-Behavior- Consequence), in which a stimulus readily evokes a behavior because of a past history of reinforce- ment in the presence of that stimulus. The con- ceptualization of MOs added a variable that provides an explanation for momentary differ- ences of such operants (Sundberg 1993). The importance of the MO cannot be understated. Motivation is paramount to

(Sundberg 1993). The importance of the MO cannot be understated. Motivation is paramount to understanding behav- ior. Although all operant behavior occurs due to its history with reinforcing or punishing conse- quences, the probability of such behavior being emitted is dependent on the relative effectiveness of such consequences. Specifically, if a reinforcer is more effective due to an EO, behavior will be more likely to be emitted at that time. If, in con- trast, there is an AO in effect, the

will be more likely to be emitted at that time. If, in con- trast, there is an AO in effect, the same behavior would be less likely to occur. In its simplest form, motivation can be described by its biological basis in states of deprivation or satiation. More com- plexly, motivation can come under the control of arbitrary relationships due to conditioning para- digms. Regardless of etiology, the analysis of the MO provides the conceptual foundation for why a reinforcer is effective for a

the analysis of the MO provides the conceptual foundation for why a reinforcer is effective for a person, at any moment in time (McGill 1999).

Conditioned motivating operations: A series of papers by Michael (e.g., 1982, 1993, 2000) distinguished between MOs that are uncondi- tioned and those that are conditioned. Uncondi- tioned MOs, or UMOs, are those events that change the effectiveness of a reinforcer or pun- isher with no learning history (e.g., food depriva- tion, sleep deprivation), while conditioned MOs, or CMOs, are those that are learned. Three distinct CMOs have been classified based on the process by which this learning

are learned. Three distinct CMOs have been classified based on the process by which this learning occurs: the reflexive con- ditioned motivating operation (CMO-R), the tran- sitive conditioned motivating operation (CMO-T), and the surrogate conditioned motivat- ing operation (CMO-S). Each of these alter the value of some other stimulus, such that its presen- tation is momentarily establishing or abolishing. The CMO-S refers to a previously neutral stimu- lus that has been correlated with another

The CMO-S refers to a previously neutral stimu- lus that has been correlated with another MO, and therefore acquires the same effects on behaviors and consequences as the original MO. The CMO-T refers to motivational events that estab- lish another stimulus as a reinforcer. The CMO-R refers to motivational events which signal an improving or worsening set of conditions, there- fore altering its own removal as a type of rein- forcement or punishment (Langthorne and McGill 2009). Although

its own removal as a type of rein- forcement or punishment (Langthorne and McGill 2009). Although complex, a conceptual under- standing of these CMOs has enhanced interven- tion around challenging behavior and teaching language skills to individuals with ASD.

Distinguishing between different antecedent events: Motivating operations have often been confused with other antecedent variables, such as discriminative stimuli (SDs, see ▶“Stimulus Control”). The important distinction is that while SDs signal the availability of reinforcement or punishment for a response, MOs increase or decrease the relative value of a reinforcer or pun- isher as a consequence for that response. This value altering effect (Laraway et al. 2003) results in a relative

for that response. This value altering effect (Laraway et al. 2003) results in a relative increase or decrease in the probability of a behavior occurring at that moment, rather than the consistency of responding under similar conditions in the future. In an applied example, a water fountain signals the availability of rein- forcement for stopping and drinking (i.e., SD) but whether you stop and drink depends on whether you are thirsty in the moment. Thirst, a noted state of deprivation, is an

drink depends on whether you are thirsty in the moment. Thirst, a noted state of deprivation, is an unconditioned EO for water as a reinforcer.

Current Knowledge The concept of the MO is influential for any intervention that relies on reinforcement or pun- ishment for its effect. Without an understanding of the MO, one cannot truly understand the impact of an intervention, as well as the variables in play if one is not working. For example, if a reinforce- ment program is put into place to increase aca- demic behavior, it is paramount that the child is motivated for the reinforcer (i.e., there is an EO in place). Motivation for a

that the child is motivated for the reinforcer (i.e., there is an EO in place). Motivation for a reinforcer in this situation may be one component of an effective interven- tion. Conversely, if in the previous example the child is not motivated for the reinforcer, academic work behavior may not increase, and the interven- tion may be deemed ineffective. This would be an error in the analysis, as in this situation, reinforcer saliency may be impeding progress. This same analysis applies to any

in this situation, reinforcer saliency may be impeding progress. This same analysis applies to any situation in which the development of adaptive behaviors, or the omis- sion of challenging behavior is contingent on delivery of a reinforcer. Most prominently, the MO has been highlighted in the areas of verbal behavior, decreasing challenging behavior, and skill acquisition instruction.

Verbal behavior: Motivating operations have been instrumental to providing a full account of language development and the acquisition of skills related to language (see ▶“Analysis of Verbal Behavior (AVB)”). A thorough analysis of language development is pertinent for learners with ASD who may have deficits in basic com- munication skills. To illustrate, the concept of the MO is paramount for teaching mands, otherwise known as requests. Skinner (1957) described the “mand” as reliant on a

teaching mands, otherwise known as requests. Skinner (1957) described the “mand” as reliant on a salient EO as an antecedent condition. Meaning, requesting only occurs in the presence of motivation for something and is spe- cifically reinforced by access to that which was requested. For example, requesting for food items will only occur when someone is hungry (a noted EO, state of deprivation). The specific reinforcer for this request would be food. “Mand training” is a particularly popular and

specific reinforcer for this request would be food. “Mand training” is a particularly popular and important skill acquisi- tion program for early learners with ASD. Requesting for items is dependent on motivation for that item or activity. Meaning, if a child is not motivated for the cookie, they are not going to independently ask for the cookie, regardless of whether they have the skill in their repertoire or not.

This analysis is important in understanding how to teach these types of language skills. Sweeney-Kerwin et al. (2007) implemented a pro- cedure to teach requesting to children with ASD. Importantly, their participants were dependent on seeing the things they were requesting which is inconsistent with the way in which requesting typically evolves. The importance of motivation was a critical component of the intervention as it was necessary that the individuals were able to request for things,

of the intervention as it was necessary that the individuals were able to request for things, only when there was motiva- tion in place. By manipulating aspects of the EO, the intervention was successful in teaching indi- viduals with ASD to request for the things they wanted, without needing to see them in the envi- ronment. This type of requesting is paramount to the development of a requesting repertoire that is independent and generalizes across a variety of variables. Similarly, the CMO-T

repertoire that is independent and generalizes across a variety of variables. Similarly, the CMO-T has been used to support teaching the skill of asking for information (Hall and Sundberg 1987; Sundberg et al. 2002). In these interventions, individuals were taught to seek out information. Importantly, information had to become momentarily valuable for the ques- tions to occur. An analysis of the CMO-T was pertinent in establishing motivation for informa- tion. This was done by repeatedly

the CMO-T was pertinent in establishing motivation for informa- tion. This was done by repeatedly presenting indi- viduals with preferred items in containers. Then, the instructor removed the items from the con- tainers. Since the individuals had previously expe- rienced the container and the item together, the presentation of the container without the item resulted in motivation for information about the location of the item, evoking the questions of “Where is the item?” This study effectively

the location of the item, evoking the questions of “Where is the item?” This study effectively increased “question asking” as a skill for individ- uals with ASD who previously did not inquire for information. Without this careful analysis and application of CMOs, it is unlikely that the skill of asking for questions would have developed and persisted for learners of deficits in this complex area of language development.

Challenging behavior: The concept of the MO has implications in the area of challenging behav- ior as well. Many individuals with ASD engage in challenging behavior that impacts their access to a variety of environments and experiences (See ▶“Challenging Behavior”). Literature on func- tional assessment (See ▶“Functional Behavior Assessment; ▶Functional Analysis”) has suggested that MOs play a primary role in the understanding of challenging behavior and its functional relationship to

play a primary role in the understanding of challenging behavior and its functional relationship to environmental events. A series of studies on functional analyses have shown that the presence or absence of MOs have directly influenced the relative success with understanding the environmental variables related to challenging behavior during behavioral assess- ments (Call et al. 2004; Iwata et al. 1994). Simi- larly, MOs have been integral to interventions intended to decrease challenging

et al. 1994). Simi- larly, MOs have been integral to interventions intended to decrease challenging behaviors in individuals with ASD (Smith and Iwata 1997). Motivation as an independent variable has been shown to impact the efficacy of behavior reduc- tion procedures for stereotypy (Lang et al. 2009), destructive behavior (McComas et al. 2003), aggression (McGuinnis et al. 2010), self-injury (McComas et al. 2003), and noncompliance (Call et al. 2004). One example of this has been conceptualized

et al. 2003), and noncompliance (Call et al. 2004). One example of this has been conceptualized in the literature on the CMO-R. Carbone and colleagues (2010) discussed the role of the CMO-R as it relates to problem behavior during discrete trial instruction (DTI; see ▶“Lovaas Approach”). Specifically, this line of work has provided a conceptual analysis for the conditions during DTI which may establish instruction as aversive, and some practical modi- fications for reducing said aversiveness,

instruction as aversive, and some practical modi- fications for reducing said aversiveness, resulting in a decrease in challenging behavior. Another important example relates to a common conse- quence for challenging behavior time-out. Removal from an environment, contingent on a challenging behavior, is intended to punish or decrease the future frequency of the challenging behavior. Unless there is motivation (i.e., an EO) for the time-in environment, it is unlikely that the time-out procedure,

motivation (i.e., an EO) for the time-in environment, it is unlikely that the time-out procedure, will suppress or decrease challenging behavior. This analysis of motivation is pertinent in understanding the mechanisms responsible for successful interventions.

Skill acquisition: The concept of the MO has also been employed to enhance skill acquisition instruction for individuals with ASD. Several instructional strategies have been identified as AOs to decrease escape-maintained behaviors during work and increase appropriate participa- tion (Carbone 2013). For example, fast-paced instruction (Roxburgh and Carbone 2012), modi- fied task difficulty (McComas, Thompson, implementing choice options (McComas et al. 2000), and the high probability (high-p)

Thompson, implementing choice options (McComas et al. 2000), and the high probability (high-p) request sequence (Mace et al. 1988) have all been dem- onstrated to increase compliance during instruc- tion by abolishing the aversive value of demands. In addition, a series of studies have shown that contriving MOs during instruction can enhance repertoires such as engagement (Neely et al. 2013), play skills (Lang et al. 2010), discrimina- tion (Lotfizadeh et al. 2012), eye contact (Carbone et al.

skills (Lang et al. 2010), discrimina- tion (Lotfizadeh et al. 2012), eye contact (Carbone et al. 2013), social initiations (Taylor et al. 2005), and joint attention (Dube et al. 2004; Isaksen and Holth 2009). For example, Lang and colleagues (2010) found that when an AO for stereotypy was created prior to play sessions, children with ASD were more likely to engage in functional play with their peers during subsequent play sessions. Tay- lor et al. (2005) manipulated an establishing oper- ation

during subsequent play sessions. Tay- lor et al. (2005) manipulated an establishing oper- ation to increase social interactions for children with ASD. Here, the authors contrived motiva- tions for a reinforcer that a peer was in control of and taught the participants to request for the items from their peers. The results of the study demon- strated that only when there was motivation for the item would the children request from their peers. Additionally, the authors reported that out- side of

would the children request from their peers. Additionally, the authors reported that out- side of the study, the children who participated were observed to request across other peers. One child requested in an untrained situation and in a novel environment as well. These data suggest the importance of motivation when planning for instruction with learners with ASD.

Future Directions An understanding of MOs has been demonstrated to increase the efficacy of interventions, under- stand more fully behavioral presentation, and enhance the overall acquisition of necessary skills for individuals with ASD. Continued research and application of interventions based in the concep- tualization of MOs are necessary to expand the analysis of behavior as it relates to these areas.

See Also ▶Abolishing Operations ▶Analysis of Verbal Behavior (AVB) ▶Establishing Operations ▶Functional Behavior Assessment ▶Reinforcement  Motivation Lynn Kern Koegel1,2, Robert L. Koegel1,3 and Mi Na Park4 1Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA, USA
2Koegel Autism Center, Eli and Edythe L. Broad Center for Asperger Research, University of California, Santa Barbara, CA, USA

3Koegel Autism Center/Clinical Psychology, Gevirtz Graduate School of Education, University of California, Santa Barbara, CA, USA
4Department of Counseling, Clinical, and School Psychology, University of California The Gevirtz School, Santa Barbara, CA, USA

Definition An important body of research relates to interven- tions that improve motivation in children with autism. This literature has been particularly rele- vant, as individuals with autism often appear unmotivated to engage in social and learning interactions. It has been hypothesized that a lack of motivation to engage in social and learning interactions may be caused by external variables (see below). Therefore, environmental manipula- tions should be effective in changing the

variables (see below). Therefore, environmental manipula- tions should be effective in changing the response-reinforcer relationships that led to the development of these motivational deficits. Along those lines, a number of studies have focused on identifying specific variables that effectively improve motivation in children with autism. To start, child-driven approaches, such as providing the child with the choice of stimulus materials, activities, and conversational topics, have been shown to

with the choice of stimulus materials, activities, and conversational topics, have been shown to improve responding and attention (Koegel et al. 1987). This has also been referred to in the literature as “following the child’s lead,” and its effectiveness has been well documented in regard to improving a range of behaviors such as communication, academics (Koegel et al. 2010), and socialization (Koegel et al. 1987). Such approaches have been com- pared and contrasted with previous empirically

(Koegel et al. 1987). Such approaches have been com- pared and contrasted with previous empirically based approaches that focus on an adult-driven curriculum without any input or consideration of the child with autism’s changing reinforcer hier- archy and have been shown to be more effective.

Another variable that improves motivation to respond is the interspersal of new (acquisition) tasks that the child has not yet mastered with previously mastered (maintenance) tasks (Dunlap 1984; Koegel and Koegel 1986). Rather than repeatedly presenting new target tasks that are likely to be difficult, interspersing mainte- nance tasks with acquisition tasks results in increased correct responding in addition to improved overall responsiveness. Similarly, when tasks are varied frequently,

in addition to improved overall responsiveness. Similarly, when tasks are varied frequently, rather than being taught in a drill-like context, motivation improves (Dunlap and Koegel 1980). Another body of research relates to the manipulation of consequences for child responses. As opposed to using a strict shaping paradigm that only rewards responses that are as good or better than the pre- vious response, child motivation can be improved by rewarding child’s attempts to respond correctly that

response, child motivation can be improved by rewarding child’s attempts to respond correctly that are free of disruptive or repetitive behaviors (Koegel and Egel 1979; Koegel et al. 1988). Related to this, providing direct and natural rewards, which are inherently linked to the child’s response, results in improved motivation in terms of more rapid acquisition of the target behaviors (Koegel and Williams 1980; Williams et al. 1981). That is, rather than providing an arbitrary unrelated reward

Williams 1980; Williams et al. 1981). That is, rather than providing an arbitrary unrelated reward (e.g., food item or token) con- tingent upon a correct response, the child is pro- vided with rewards that are directly related to their behaviors. For example, a food may be given to a child learning first words contingent upon label- ing the food item so that it is directly related to the child’s response. The aforementioned procedures can be used in combination with one another and have been

response. The aforementioned procedures can be used in combination with one another and have been documented to improve motivation as measured by decreased levels of disruptive behav- ior; improved performance in academic, lan- guage, and social domains; and improved child affect (Koegel et al. 1987; Koegel and Koegel 2006).

Another variable that has been shown to affect child motivation for some (but not all) chil- dren is clinician affect. For example, research suggests that some children respond more favorably when the clinician shows specific types of affect while providing reinforcers, such as either strong positive affect or low affect depending on the child. As a whole, these studies suggest that motivation appears to be measurable and treatable. At this point, the most effective programs use a combination

to be measurable and treatable. At this point, the most effective programs use a combination of motivational pro- cedures, applied simultaneously, to produce large changes in the behavior of children with autism. This body of literature has led researchers to con- ceptualize the construct of motivation as “pivotal” such that positive changes in a number of untreated symptoms/behaviors occur when a child with autism is motivated to respond (Koegel and Koegel 2006). Thus, the literature on

when a child with autism is motivated to respond (Koegel and Koegel 2006). Thus, the literature on pivotal response treatment (PRT) uses motiva- tional procedures as a core underlying principle of the intervention, and motivational components have effectively been incorporated into interven- tions for improving articulation (Koegel et al. 1998), first words (Koegel et al. 1987), academic engagement (Koegel et al. 2010), and social con- versation (Koegel et al. 1987) in children with autism.

(Koegel et al. 2010), and social con- versation (Koegel et al. 1987) in children with autism. Additionally, studies have shown that col- lateral improvements in disruptive behavior occur when such motivational variables are employed without needing to target the disruptive behavior directly.

While the general concept of motivation can be conceptualized by feelings of an individ- ual, such as the desire or incentive to engage in activities, motivation also can be defined by observable and measureable behaviors. Specifi- cally, motivation has been measured by task engagement, responsiveness, decreases in response latency, initiations, and affect, as well as an absence of avoidance behavior (Koegel et al. 2001). During the intervention sessions when motivational procedures are

behavior (Koegel et al. 2001). During the intervention sessions when motivational procedures are incorporated into the teaching, the children show an increase in the number of responses and decrease in response latency, initiate new related behaviors, and demonstrate positive affect. Task engagement and responsiveness can be monitored by the num- ber or rate of responses the child emits. Latency can be measured by assessing the amount of time that passes before the child begins to engage in a

can be measured by assessing the amount of time that passes before the child begins to engage in a learning task or activity. Initiations are important in that if the children are motivated to engage in the tasks, they are likely to spontaneously engage in the task, sustain participation, and initiate future activities. This also relates to generalization, as motivated children may spontaneously demon- strate the targeted responses across settings, behaviors, and people. Changes in affect can

demon- strate the targeted responses across settings, behaviors, and people. Changes in affect can also be seen in motivated children. Affect is often rated by Likert scales in general categories of positive, neutral, and negative affect and has been defined as interest (e.g., child is alert and involved in the activity), happiness (e.g., the child smiles, laughs, and seems to be enjoying self), and enthusiasm (Baker et al. 1998; Koegel and Egel 1979; Koegel et al. 2009). In addition to child

and enthusiasm (Baker et al. 1998; Koegel and Egel 1979; Koegel et al. 2009). In addition to child affect, motivation can be measured by lowered levels of disruptive behaviors (Dunlap and Koegel 1980; Koegel et al. 1992). Multiple measures showing improved latency, affect, happiness, enthusiasm, and levels of disruptive behavior have been used to measure motivation with high degrees of reliability (Dunlap and Koegel 1980).

Historical Background The interest in the construct of motivation, as it relates to autism spectrum disorder (ASD), came about as a result of the apparent lethargy and disinterest individuals with autism may demon- strate in regard to social conversation, learning, and other activities (Lovaas 1977). This led researchers to hypothesize theories for this lack of motivation. A possible theoretical explanation is related to the concept of “learned helplessness.” Specifically, it has been

explanation is related to the concept of “learned helplessness.” Specifically, it has been hypothesized that during exposure to an uncontrollable outcome, a lack of contingency between the behavior and the out- come is learned (Seligman and Altenor 1980). Simply put, if an individual receives non- contingent rewards or punishers, the individual will not initiate behaviors and will appear lethar- gic and inactive. Early animal studies that postu- lated the learned helplessness theory were

gic and inactive. Early animal studies that postu- lated the learned helplessness theory were carefully controlled and showed the effect of uncontrollable events causing a disruption in behavior. Subsequently, studies replicated this phenomenon using human subjects in controlled settings. They showed that if individuals’ responses were not reinforced, they too simply stopped responding (Gatchel et al. 1975). Learned helplessness has also been hypoth- esized to occur in other human conditions,

et al. 1975). Learned helplessness has also been hypoth- esized to occur in other human conditions, such as stress and depression (Miller and Seligman 1975; Price et al. 1978). Some studies have also shown that physiological changes, such as norepinephrine depletion, weight loss, and ulcers occur at a higher rate when consequences are noncontingent and outcomes are uncontrollable (Abramson et al. 1978; Seligman and Weiss 1980). Data also sug- gest that this theory may be highly relevant for

al. 1978; Seligman and Weiss 1980). Data also sug- gest that this theory may be highly relevant for autism as well (Koegel and Egel 1979; Koegel and Koegel 2006). The theory of motivation is an important con- cept in regard to intervention for autism, as it supports the notion that some, or all, of the dis- ability may relate to environmental variables. That is, the state of an apparent lack of motivation is hypothesized to occur when the individual’s responses are uncontrollable, or “learned

motivation is hypothesized to occur when the individual’s responses are uncontrollable, or “learned help- lessness.” In regard to children with autism, reduced social responding that begins very early in life due to central nervous system dysfunction may result in the children experiencing high degrees of noncontingent consequences. This may create a situation wherein the child learns that responding and reinforcement are indepen- dent. This weakening of the response-reinforcer relationship may

and reinforcement are indepen- dent. This weakening of the response-reinforcer relationship may cause a decrease in social responding and lower levels of motivation in chil- dren with autism.

Current Knowledge The lack of responsiveness and long response latencies demonstrated by children with autism as well as an apparent lack of motivation and curiosity have been discussed since the 1960s when principles of applied behavior analysis were beginning to show promise with children with autism. Within the broad framework of envi- ronmentally manipulated behaviors, researchers discussed the role of reinforcers in this apparent lack of motivation. They proposed that the potency or

the role of reinforcers in this apparent lack of motivation. They proposed that the potency or availability of reinforcers may not be adequate when a child with autism engages in difficult tasks (Koegel and Egel 1979), thereby creating a lack of motivation. Koegel and Egel (1979) were the first authors to present the possi- bility of learned helplessness and the importance of motivation to address the problem. Following that publication, a number of studies addressed individual areas of

address the problem. Following that publication, a number of studies addressed individual areas of intervention that appeared to directly improve motivation. In 1987, Koegel, O’Dell, and Koegel published work using an intervention package, containing a large number of motivational variables (discussed above), was especially effective.

Future Directions Although the literature describes specific proce- dures for improving motivation, there continues to be a need for future research relating to the mea- surement of motivation, the refinement of existing procedures that improve motivation, and addi- tional intervention procedures for improving motivation.

Motivation Assessment Scale Corey Ray-Subramanian Waisman Center, University of Wisconsin-Madison, Madison, WI, USA  Synonyms MAS  Description The Motivation Assessment Scale (MAS) is a rating scale that assesses functions of problem behavior in individuals with developmental dis- abilities through informant responses. It includes 16 questions and is comprised of four subscales that each represents a possible function of the behavior: attention, escape, sensory, and tangible. Each question has

a possible function of the behavior: attention, escape, sensory, and tangible. Each question has six response options (0 ¼ never, 1 ¼ almost never, 2 ¼ seldom, 3 ¼ half the time, 4 ¼ usually, 5 ¼ almost always, and 6 ¼ always). Scores are calculated by summing the item ratings within a particular subscale/function and calculating the mean rating for that subscale. High scores for one or more of the subscales suggest that those functions may be maintaining the individual’s problem behavior

of the subscales suggest that those functions may be maintaining the individual’s problem behavior (Durand and Crimmins 1988), although the authors of the instrument do not specify what constitutes a high score. An example item on the MAS is “Does this behavior occur when you are talking to other persons in the room?” (Durand & Crimmins, p. 102). The MAS is considered an indirect assess- ment method because it is removed in time and place from the behaviors being measured (Floyd et al. 2005).

Historical Background The MAS was originally developed to assess the functions of self-injurious behavior, in particular (Durand and Crimmins 1988), within a frame- work of applied behavior analysis. It was designed to be a more efficient alternative to direct functional behavior analysis methods (Durand and Crimmins 1988). Based on previous literature identifying common functions of self-injurious behavior (i.e., social attention, tangible conse- quences, escape from unpleasant situations, and

behavior (i.e., social attention, tangible conse- quences, escape from unpleasant situations, and sensory consequences), Durand and Crimmins (1988) created four subscales, each representing a specific function, that comprise the MAS. The items were generated following interviews with teachers, clinicians, and parents of children with developmental disabilities.

Psychometric Data In their original study based on 50 children with developmental disabilities who exhibited frequent self-injurious behavior, Durand and Crimmins (1988) reported interrater reliability coefficients ranging from .66 to .92 for the individual items and .80 to .95 for the raw mean subscale scores. Test-retest reliability, over a 30-day period, was calculated and the coefficients ranged from .89 to .98 for the individual items and .92 to .98 for the mean subscale raw scores. The

from .89 to .98 for the individual items and .92 to .98 for the mean subscale raw scores. The authors also found that teachers’ ratings on the MAS were highly predictive of student’s behavior in an analogue experimental condition (Durand & Crimmins). However, the psychometric properties of the MAS have since been questioned by other researchers (e.g., Paclawskyj et al. 2001), as sub- sequent studies examining the validity and reli- ability of the measure have produced inconsistent results. It

examining the validity and reli- ability of the measure have produced inconsistent results. It has also been argued that research on the MAS and other indirect functional assessment measures has not carefully examined validity evi- dence based on scale content and informant response processes, evidence of user satisfaction with the measure, or the treatment utility of the scale (Floyd et al. 2005).

Some factor analytic research has provided support for the intended four-factor structure of the MAS (i.e., sensory, escape, attention, and tan- gible), although the factor structure was some- what different for a sample with lower frequency problem behaviors (Singh et al. 1993). Other researchers have not found support for the four- factor model, specifically the sensory function subscale (Kearney et al. 2006). Joosten and Bundy (2008) also failed to find support for the construct validity of

et al. 2006). Joosten and Bundy (2008) also failed to find support for the construct validity of the MAS in the form of a four-factor structure or as a unidimensional mea- sure of motivating factors for stereotyped behav- ior. In addition, Duker and Sigafoos (1998) results did not fully support the factor structure of the MAS, and their results suggest that the type of problem behavior may be differentially related to reliability and factor structure.

Research examining the internal consistency of the MAS has also produced inconsistent results. Cronbach’s alpha coefficients for the subscales ranged from .68 to .86 in a study by Spreat and Connelly (1996) and .68 to .87 in a study by Duker and Sigafoos (1998). However, Shogren and Rojahn (2003) reported values ranging from .80 to .96. Subsequent research on the interrater reliabil- ity of the rating scale has produced lower values than those reported in the original Durand and Crimmins (1988)

scale has produced lower values than those reported in the original Durand and Crimmins (1988) study. Shogren and Rojahn (2003) found interrater reliability coefficients for the four subscales ranging from .35 to .73, and Streat and Connelly (1996) reported values ranging from .31 to .57. Another study found that interrater agreement depended upon the type of problem behavior (Duker and Sigafoos 1998). For example, raters were less likely to agree on the functions of destructive behaviors (e.g.,

For example, raters were less likely to agree on the functions of destructive behaviors (e.g., aggressive behavior) as compared to mal- adaptive (e.g., self-injurious behavior) and dis- ruptive (e.g., screaming) behaviors (Duker & Sigafoos).

Research examining other types of reliability evidence for the MAS has also failed to provide clear evidence that the instrument is psychometri- cally sound. For example, Shogren and Rojahn (2003) reported test-retest reliability coefficients ranging from .71 to .89 for the four subscales, which are lower values than those reported origi- nally by Durand and Crimmins (1988). Streat and Connelly (1996) also found evidence of poor reli- ability in the difference scores between subscales, which

(1996) also found evidence of poor reli- ability in the difference scores between subscales, which are used to make clinical decisions regard- ing the function of the problematic target behavior.

Clinical Uses The MAS has been used clinically to identify possible factors that are maintaining an individ- ual’s problem behavior. The indentified function can then be used to develop an intervention pro- gram to reduce the problem behavior and to select reinforcers for appropriate behavior. Some have argued that the MAS should be used in conjunc- tion with direct observation methods because of its psychometric limitations (e.g., Duker and Sigafoos 1998; Shogren and Rojahn 2003; Spreat and

of its psychometric limitations (e.g., Duker and Sigafoos 1998; Shogren and Rojahn 2003; Spreat and Connelly 1996).

See Also ▶Applied Behavior Analysis (ABA) ▶Behavioral Assessment ▶Functional Analysis ▶Functional Behavior Assessment  Motor Control Su Mei Lee Child Neuroscience Lab, Yale Child Study Center, New Haven, CT, USA  Synonyms Cerebellum; Motor cortex  Definition Motor control refers to the coordination of infor- mation exchanged between the neocortex in the brain and the muscular and somatosensory sys- tems to bring about controlled, or voluntary, movements. Controlled movements are planned,

sys- tems to bring about controlled, or voluntary, movements. Controlled movements are planned, organized, and initiated in the prefrontal, pre- motor, and primary motor cortices. Instructions for the movement are then sent through the spinal cord to the appropriate muscles to execute the movement. The somatosensory system provides feedback about the movement, and the basal ganglia, brain stem, and cerebellum fine-tune the movement by adjusting force and correcting for movement errors.

See Also ▶Cerebellum ▶Motor Cortex  Motor Cortex ▶Motor Control ▶Precentral Gyrus  Motor Development Assessment ▶Psychomotor Development Index  Motor Planning Casey Zampella and Loisa Bennetto Department of Clinical and Social Sciences in Psychology, University of Rochester, Rochester, NY, USA

Definition Motor planning can be broadly defined as the capacity to plan the necessary steps to achieve purposeful movements. It is often considered under the larger concept of praxis, which com- prises the conceptualization, organization, and execution of an action sequence. Although the terms “motor planning” and “praxis” are some- times used interchangeably, motor planning may be more accurately thought of as one element of praxis, distinct from both the idea behind the movement and its

thought of as one element of praxis, distinct from both the idea behind the movement and its actual implementation. In addi- tion to being dependent in part on neural motor systems, motor planning may be affected by the multimodal integration of sensory processes involved in proprioception, vestibular function- ing, and vision, and by capabilities for preemp- tively formulating a mental sequence of actions. The clinical assessment of motor planning typ- ically occurs as part of a broader

of actions. The clinical assessment of motor planning typ- ically occurs as part of a broader evaluation of motor functioning. Few clinical tests specifically measure motor planning; however, a number of standardized instruments can provide relevant information. These include batteries that assess a range of motor abilities, such as fine and gross motor skills, limb and verbal praxis, and sensori- motor functioning. In addition, the assessment of adaptive skills and motor performance during

motor functioning. In addition, the assessment of adaptive skills and motor performance during everyday activities can provide some indication of motor planning ability. A thorough develop- mental history is also usually conducted for chil- dren with motor planning or praxis difficulties, including the documentation of major motor mile- stones and early motor behaviors. Disorders related to motor planning and praxis include apraxia and dyspraxia. Apraxia is typi- cally thought of as an acquired

planning and praxis include apraxia and dyspraxia. Apraxia is typi- cally thought of as an acquired neurological con- dition in which skilled movement is impaired in the presence of intact basic sensorimotor and attentional functioning. The term “dyspraxia” is often used to describe similar symptoms that are present early in development and have a less concrete etiology. Deficits in praxis in autism spectrum disorder (ASD) generally fall under the category of dyspraxia or developmental

in autism spectrum disorder (ASD) generally fall under the category of dyspraxia or developmental dyspraxia. Disorders of praxis can affect multiple modalities, including fine motor functioning, gross motor functioning, oculomotor control, orofacial movement, and speech production.

Historical Background General impairments in motor functioning have been documented in individuals with ASD since both Kanner’s and Asperger’s initial descriptions of the conditions. Since then, basic motor deficits have been consistently found in ASD, with many individuals displaying abnormalities in gait, pos- tural control, coordination, balance, tone, and/or strength. Furthermore, there is evidence that aspects of motor dysfunction are often identifiable early in development, present

is evidence that aspects of motor dysfunction are often identifiable early in development, present throughout the lifespan, and pervasive across levels of cognitive functioning. The study of praxis has been an area of increas- ing interest within the larger domain of motor functioning in ASD. One focus of earlier work related to praxis was the assessment of clumsi- ness, or motor incoordination, as a possible symp- tom to differentiate subtypes within the autism spectrum. Historically,

as a possible symp- tom to differentiate subtypes within the autism spectrum. Historically, clumsiness was often con- sidered a particular characteristic of Asperger syn- drome, whereas individuals with classic autism were thought to have preserved motor function. Most evidence now suggests that motor clumsi- ness does not discriminate among subtypes; indi- viduals with both Asperger syndrome and autism show similar degrees of impairment. Although clumsiness and dyspraxia are sometimes used

and autism show similar degrees of impairment. Although clumsiness and dyspraxia are sometimes used synonymously, it is important to recognize that clumsiness is a clinical description that does not address the specific nature of an underlying motor impairment. Current research has taken a more systematic and componential approach to study- ing dyspraxia, with the goal of identifying the precise roots of the movement disturbances seen in individuals with ASD.

Current Knowledge Dyspraxia in ASD The growing body of literature focused on dyspraxia in ASD has, on the whole, confirmed that both children and adults with ASD display deficits on overall measures of praxis. In fact, difficulties with skilled limb movements have become one of the more reliable motor findings in the field. Impairments have been found in the ability to produce actions in response to com- mand, imitate actions, and carry out actions involving tools. Moreover, these impairments are

com- mand, imitate actions, and carry out actions involving tools. Moreover, these impairments are seen in transitive movements, or those involving objects, as well as intransitive movements, which do not include objects and are often more symbolic. Although basic motor skills are associ- ated with praxis ability, individuals with ASD consistently appear to display deficits in praxis beyond what can be accounted for by general motor dysfunction. This suggests that praxis is a specific area of

can be accounted for by general motor dysfunction. This suggests that praxis is a specific area of weakness for individuals with ASD within the larger motor domain. In addition, although correlations between praxis and both age and cognitive ability have been reported, the available data largely indicate that symptoms of dyspraxia in ASD remain even after controlling for these factors. Of particular interest, praxis impairment has been shown to predict the severity of autistic symptoms, whereas

interest, praxis impairment has been shown to predict the severity of autistic symptoms, whereas correlations between basic motor skill and ASD symptomatol- ogy have not been found.

Motor Planning in ASD Research has also sought to examine the motor planning component of praxis more directly. One approach has utilized paradigms in which poten- tial impairments at the planning or preparation stage of a goal-directed motor act can be assessed separately from impairments at the execution stage. An example is a task in which participants are required to generate hand movements toward alternating targets. The planning stage is defined as the time between the appearance of the

toward alternating targets. The planning stage is defined as the time between the appearance of the target and the point at which the hand begins to move; the execution stage is defined as the time in which the hand is in motion. Research employing these types of tasks has found that the planning stage of movement is generally atypical in individuals with ASD, while the execution stage is similar to typically developing controls.

Motor planning abilities in individuals with ASD have also been investigated using a reach, grasp, and place paradigm, in which participants are instructed to reach for an object, pick it up, and place it in a specified location or orientation. In one study in which children were required to reach, grasp, and place a rod in a certain position, typically developing children consistently chose initial movements that allowed for a comfortable end state. In contrast, children with ASD were more

movements that allowed for a comfortable end state. In contrast, children with ASD were more likely to favor an easier initial grip, even when this forced an uncomfortable final hand posture. In a similar study, children were asked to pick up an object and place it in either a small or large container. Typically developing children took longer during both the reach/grasp and place stages on the trials with the smaller com- pared to the larger target container. This suggests global planning of

trials with the smaller com- pared to the larger target container. This suggests global planning of actions, such that when the final step of a motor act requires more precision, the execution of earlier steps is also affected. In contrast, for children with ASD, only the place stage was longer, signifying that although they were affected by the increased precision required at the end, they were less likely to plan for this in their initial actions. Overall, the performance of individuals with

less likely to plan for this in their initial actions. Overall, the performance of individuals with ASD on reach, grasp, and place tasks indicates that they are less likely than typically developing individuals to plan goal-directed actions holisti- cally. Instead, they seem to execute the necessary steps for a motor act independently, such that knowledge of the end goal does not influence the initial movements in an action sequence. How- ever, there is some evidence to suggest that the motor

movements in an action sequence. How- ever, there is some evidence to suggest that the motor planning behavior of children with ASD may not differ from their peers when tasks have fewer higher order cognitive demands. For exam- ple, on a more constrained grip selection paradigm in which children reached for and grasped a han- dle and turned it in a specified direction, differ- ences in performance were not found between age-matched groups.

Related research has found that some individ- uals with ASD may have difficulty with coordinat- ing the stages of a reach-to-grasp movement, failing to temporally couple the velocity of the reach stage with the timing of their hand opening during the grasp stage. One study found that lower functioning children with ASD did not seem to synchronize the timing of their reach and grasp based on target location and size in the same way as controls. Instead, they performed the movement in two

target location and size in the same way as controls. Instead, they performed the movement in two distinct stages, completing the reaching movement first, and then opening their hand to grip the object. However, high-functioning chil- dren with ASD performed similarly to typically developing children, with the timing of the reach and handgrip movements well synchronized. A final area of research on motor planning in ASD has explored how the advanced presentation of information about a target

on motor planning in ASD has explored how the advanced presentation of information about a target affects goal-oriented movements. One hypothesis is that goal-directed actions are planned in a predictable sequence, where the appropriate hand is chosen first, followed by the direction of the movement, then by the amount of movement necessary to achieve the target. This model has been tested through the use of a precue technique, in which prior informa- tion about hand, direction, and/or movement

the use of a precue technique, in which prior informa- tion about hand, direction, and/or movement extent is given to the participant. Results indicate that young adults with and without ASD display a similar, predictable pattern on this task, suggesting that they can effectively use advanced information to plan movements. Individuals in both groups tend to derive the most benefit from information pertaining to which hand to use, followed by information about direction, and finally by information

pertaining to which hand to use, followed by information about direction, and finally by information about the amount of move- ment. Nevertheless, the reaction times of individ- uals with ASD were slower and more variable than those of their peers.

Clinical Significance Motor deficits are not a diagnostic characteristic of ASD, yet the importance of studying how var- ious aspects of motor dysfunction may contribute to the condition has been increasingly recognized. Without a doubt, impairments in planning pur- poseful movement can have deleterious effects on many aspects of daily functioning, including basic tasks like feeding and dressing. In addition, the impact of difficulties with motor planning on social and communicative functioning

In addition, the impact of difficulties with motor planning on social and communicative functioning is a topic of growing interest. Some theories posit that the motor system plays a foundational role in certain interpersonal skills. The ability to effectively plan and produce movements within an appropriate time frame may be crucial for reciprocal social interaction. In addition, praxis ability has been empirically associated with imitation. Difficulties with imitation have been widely documented

been empirically associated with imitation. Difficulties with imitation have been widely documented in ASD across ages and functioning levels: individ- uals with ASD have been shown to imitate less than their peers, display poorer approximations of imitated movements, and consistently make spe- cific types of errors during imitation tasks. Fur- thermore, abnormalities have been found for the imitation of nonmeaningful movements, as well as movements with more social or symbolic sig- nificance,

of nonmeaningful movements, as well as movements with more social or symbolic sig- nificance, suggesting that a fundamental problem with skilled motor functioning may be involved in imitation impairments in ASD.

Future Directions The extant research has established motor planning as an area worthy of further investigation in ASD. An important direction for future research will be to build on existing work exploring components of motor acts to identify the specific aspects of goal- directed movement that are affected in ASD, both globally and at different points in development. There is also a need for further research on how functioning in other domains may impact the com- ponents of movement. Although

research on how functioning in other domains may impact the com- ponents of movement. Although basic motor func- tioning, general intellectual ability, attentional skills, motor learning, and sensory abilities have all been implicated in the organization of move- ment, the relationship between these various skill domains and motor planning in individuals with ASD is still not well understood.

Recent work has specifically highlighted the need to distinguish between motor planning and higher order planning, the latter of which is thought to rely on executive functioning skills. Motor planning is distinctly dependent on the ability to implement learned movements, whereas executive planning requires abstraction and men- tal sequencing of goal-oriented decisions. Both motor and executive planning are often necessary to effectively prepare and execute actions, making it difficult to pin

planning are often necessary to effectively prepare and execute actions, making it difficult to pin down the precise nature of move- ment planning difficulties in ASD. One viewpoint has been that individuals with ASD perform poorly on motor planning tasks because of exec- utive functioning impairments, and that they would demonstrate intact performance on tasks that do not require executive skills. However, at least one study has shown that individuals with ASD perform poorly across a range of

However, at least one study has shown that individuals with ASD perform poorly across a range of motor planning tasks regardless of the level of executive demand, suggesting that motor planning may be impaired even in situations that do not require higher order abilities.

Another direction for future research is contin- ued exploration of the neurobiological underpin- nings of motor planning and related functions in ASD. Although research in ASD has implicated abnormalities in a number of regions important in motor functioning, less work has specifically addressed functional atypicalities during motor tasks. The neurobiology of the motor system in typically developing individuals is well under- stood. Thus, studying the neural bases of motor dysfunction in ASD

individuals is well under- stood. Thus, studying the neural bases of motor dysfunction in ASD may offer a more straightfor- ward avenue for identifying structural and connectivity abnormalities in this disorder, poten- tially leading to a better understanding of the neural bases of other affected domains. In addi- tion, functional neuroimaging studies can provide further information on how individuals with ASD approach motor planning tasks, helping to answer questions about the degree to which

with ASD approach motor planning tasks, helping to answer questions about the degree to which executive and other skills play a role in motor planning in this condition. Finally, further research is needed to better understand if and how motor planning difficulties might influence the pathogenesis of core symp- toms in ASD, including social and communica- tion impairments. The answers to these questions will benefit from more research on the develop- mental timeframe of motor planning in ASD, and

will benefit from more research on the develop- mental timeframe of motor planning in ASD, and how this interfaces with other aspects of development.

See Also ▶Apraxia ▶Developmental Apraxia ▶Developmental Dyspraxia ▶Dyspraxia ▶Executive Function (EF) ▶Imitation ▶Praxis  Movement Assessment Battery for Children, Second Edition ▶Movement Assessment Battery for Children: Second Edition (MABC-2)  Movement Assessment Battery for Children: Second Edition (MABC-2) Ted Brown Department of Occupational Therapy, School of Primary and Allied Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula Campus,

Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula Campus, Frankston, VIC, Australia

Abbreviations | AB | Age bands | |---|---| | ADHD | Attention deficit/hyperactivity disorder | | AS | Asperger’s Syndrome (AS) | | ASD | Autism Spectrum Disorder | | BOTMP | Bruininks-Oseretsky Test of Motor Proficiency | | BOT-2 | Bruininks-Oseretsky Test of Motor Proficiency, Second Edition | | CFA | Confirmatory Factor Analysis | | DCD | Developmental Coordination Disorder | | ICC | Intra-class Correlation Coefficient | | MABC | Movement Assessment Battery for Children | | MABC-2 | Movement

Correlation Coefficient | | MABC | Movement Assessment Battery for Children | | MABC-2 | Movement Assessment Battery for Children, Second Edition | | PDD | Pervasive Developmental Disorders | | PDMS-2 | Peabody Developmental Motor Scales – Second Edition | | SD | Standard Deviation | | SDDMF | Specific Developmental Disorder of Motor Function | | TOMI | Test of Motor Impairment | | TOMI-H | Test of Motor Impairment-Henderson Revision | | UK | United Kingdom |  Synonyms MABC; MABC-2; Movement

of Motor Impairment-Henderson Revision | | UK | United Kingdom |  Synonyms MABC; MABC-2; Movement assessment battery for children, second edition  Description The Movement Assessment Battery for Children, Second Edition (MABC-2) (Henderson et al. 2007) is a revision of the Movement Assessment Battery for Children (MABC) (Henderson and Sugden 1992) and is one of the most widely used assessment tools by occupational therapists, physiotherapists, psychologists, and educational professionals

tools by occupational therapists, physiotherapists, psychologists, and educational professionals (Barnett and Henderson 1998; Brown and Lalor 2009; Wiart and Darrah 2001). The purpose of the MABC-2 is the identification and description of impairments in children’s motor function. It is composed of two parts: the Performance Test and the Checklist (see Table 1). The Psychometrics Centre at the Cambridge Judge Business School (n.d.) states that the MABC-2 Performance Test or the Checklist “can be

Judge Business School (n.d.) states that the MABC-2 Performance Test or the Checklist “can be used to identify a child with motor difficulties by comparing the child’s score to the normative data. However, neither instrument should be used on its own as a predictive screening instru- ment” (para 1). The MABC-2 Performance Test involves chil- dren completing a series of fine and gross motor tasks on which they are scored and rated. The Performance Test is designed for use with children aged 3–17

which they are scored and rated. The Performance Test is designed for use with children aged 3–17 years in one of three age bands (AB) (AB1, 3:0–6:11 years; AB2, 7:0–10: 11 years; and AB3, 11:0–16:11 years) and evalu- ates motor skills under three categories: (1) Man- ual Dexterity, (2) Aiming and Catching, and (3) Balance. The MABC-2 Checklist requires an adult who knows the children being assessed well to rate their motor competence on a 30-item scale. Since the MABC-2 is a revision of an

well to rate their motor competence on a 30-item scale. Since the MABC-2 is a revision of an existing instrument, it is important for professionals who use the motor skill battery to be familiar with its age range, scoring format, standardization sam- ple, reliability, validity, and clinical utility. Details of the purpose, age range, administration, response format, scale construction, standardiza- tion, and scores provided of the MABC-2’s Performance Test and Checklist are reported in Table

tion, and scores provided of the MABC-2’s Performance Test and Checklist are reported in Table 1.

| Test section | MABC-2 performance test | MABC-2 checklist | |---|---|---| | Purpose | The identification and screening of children with delay or impairment of their motor development, provision of appropriate intervention planning, clinical exploration, program evaluation, and as a research tool with children who are believed to be at risk of motor difficulties | The efficient and economical assessment of the movement competence of children and to identify children who are likely to have

assessment of the movement competence of children and to identify children who are likely to have difficulty with their movement. The MABC-2 checklist takes assessment into the everyday situations in which the child has to function, including the extent to which a child’s attitudes and feelings about motor tasks are situation specific or more generalized. Therapists can also obtain parents’ or teachers’ views on a child’s movement in everyday settings |

| Test age range | 3:0–16:11 years across three age bands (AB) | 5:0–12:11 years |

| AB1 | 3:0–6:11 years | | | AB2 | 7:0–10:11 years | | | AB3 | 11:0–16:11 years | | | Who can administer? | Individuals who are certified by a professional organization recognized by Pearson assessment or who have a graduate and/or postgraduate qualification relevant to their profession. This qualification code would include psychologists, speech therapists, physiotherapists, occupational therapists, mental health professionals, health practitioners, and education professionals. No additional

mental health professionals, health practitioners, and education professionals. No additional specialized training is required; however, familiarity with test items is required. It is envisaged in the future that specialized training modules will be set up to allow a wider range of professionals’ access to the MABC-2 | Available to psychologists, classroom teachers, special education teachers, physical education specialists, pediatricians, occupational therapists, speech therapists, and

physical education specialists, pediatricians, occupational therapists, speech therapists, and physiotherapists. A child’s parent or primary caregiver may also contribute to the completion of MABC-2 checklist if requested by a professional |

| Time to administer | Individual administration usually takes approximately 20–40 min depending on the age of the children; however, 50 min is suggested for setup, testing, and completion of the record form | The MABC-2 checklist can be completed with a group or individual and takes the respondent approximately 10 min to complete |

| Time to score | 10–15 min | 10 min | | Materials/equipment required | Stopwatch, clipboard, pencil, correct age band record form, test manual, and test kit containing full set of testing materials and manipulatives | Checklist and pencil |

| Method of administration | Physical demonstration of all items is required to ensure each child assessed fully understands the verbal instructions for each task. Verbal instructions are not scripted, allowing for the assessor to alter their language according to the age of the child and the child’s level of comprehension. Important features of the physical demonstration are emphasized verbally to the child. The child is provided a practice phase (that is not scored/rated) and a formal trial

to the child. The child is provided a practice phase (that is not scored/rated) and a formal trial (which is scored/rated) | A basic list of specific motor behaviors is outlined for the adult rater to observe and rate the child’s performance and competency. A total score is obtained by summing the ratings, and this is then mapped onto a “traffic light” scoring system (outlined below under the “scores provided” heading) |

| Response format | The child’s performance on a task can be recorded in 1 of 4 ways 1 The child’s best result for an individual task * 2 An “F” is recorded for a failed attempt 3 An “R” is recorded for refusal to attempt or complete a task 4 An “I” is recorded if it is inappropriate for a child to attempt a task * if a child completes a task successfully according to the item parameters, the item is scored according to criteria and then converted to a scaled score reported as 1–5, where 5

item is scored according to criteria and then converted to a scaled score reported as 1–5, where 5 indicates a poor performance. Some items are scored based on number of correct repetitions, length of time, or accuracy of responses | In sections A and B, the rater has four alternative responses for the child’s task competence 0 – very well 1 – just OK 2 – almost 3 – not close The summed score of sections A and B represents the total motor score and interpreted with the “traffic light” system

of sections A and B represents the total motor score and interpreted with the “traffic light” system outlined below. Section C allows for either a yes or no response to factors that may affect a child’s movement and is not meant to be summed. Rather, these factors should be reviewed by the assessor to determine how much the child is prevented from demonstrating their true capability due to the influence of the observed factors |

| Scale construction/test structure | Eight tasks are administered across three specific components: (a) manual dexterity, (b) aiming and catching, and (c) balance. Adding all eight scores yields a total motor impairment score (maximum 40). Overall scores that are below the 15th percentile are deemed at risk; those below the 5th percentile indicate a definite movement impairment | The checklist comprises three sections Section A: 15 items regarding movement in a static or predictable environment

three sections Section A: 15 items regarding movement in a static or predictable environment Section B: 15 items regarding movement in a dynamic or unpredictable environment Section C: 13 items regarding non-motor factors that may affect movement |

| Standardization sample | The norms of the MABC-2 are derived from a stratified sample of 1172 children (48.3% male, 51.7% female) in the United Kingdom (UK), who were assessed between November 2005 and July 2006. This sample closely approximated the UK 2001 census data. The test sample included 12 UK geographic regions, 16 age levels (e.g., ages 3–16 years), four ethnic groups (e.g., white, 90.2%; black, 2.6%; Asian, 3.9%; and other, 3.2%), and five levels of parental education | 656 children

black, 2.6%; Asian, 3.9%; and other, 3.2%), and five levels of parental education | 656 children of the 1172 sample fell into the age range of the MABC-2 checklist. Of the 656, teachers for 395 children (50.9% male, 49.1% female) completed the MABC-2 checklist. The test sample included 12 UK geographic regions, 8 age levels (e.g., ages 5–12 years), four ethnic groups (e.g., white, 90.4%; black, 2.6%; Asian, 3.5%; and other, 3.5%), and five levels of parental education. This sample closely

2.6%; Asian, 3.5%; and other, 3.5%), and five levels of parental education. This sample closely approximated the UK 2001 census data |

| Scores provided | Standard scores and percentile ranks are provided. “Total standard scores are calculated and converted into percentiles to determine how a child’s motor coordination compares to typically developing children of the same age” (Camden et al. 2013, p. 1). Additional score interpretation according to a “traffic light” system is provided. This system is the same for both the MABC-2 performance test and checklist, allowing for direct comparison if required. Any child whose score

performance test and checklist, allowing for direct comparison if required. Any child whose score falls at or below the 5th percentile is regarded as having a significant movement difficulty (red zone), between the 6th and 15th percentile at risk (amber zone), and above the 16th percentile as unlikely to have a movement difficulty (green zone) | A percentile cute score is provided. The “traffic light” system shows whether a child is in the “green zone” which is within the age-expected normal range,

system shows whether a child is in the “green zone” which is within the age-expected normal range, in the “amber zone” indicating a need for monitoring due to minor delay or movement problem, or in the red zone where it is highly likely that child has a serious movement problem |

The MABC (Henderson and Sugden 1992) was normed with children from Canada, the United States, and the United Kingdom and has subsequently been translated into several European languages (including Swedish, Danish, Dutch, Italian, and Finnish) (Livesey et al. 2007) and Chinese (Chow and Henderson 2003). Pre- dominantly used throughout the United Kingdom, Canada, Australia, several European countries (e.g., the Netherlands, Belgium, Italy, Finland, Denmark, Sweden, and Greece), and Asia to

(e.g., the Netherlands, Belgium, Italy, Finland, Denmark, Sweden, and Greece), and Asia to assess pediatric motor impairments, it has been shown to correlate positively with other pediatric motor assessments used worldwide (Smits- Engelsman et al. 1998; Missiuna et al. 2006) and is well recognized as one of the most extensively utilized motor impairment assessments in the world (Chow and Henderson 2003; Chow et al. 2006a, 2006b; Croce et al. 2001; Tan et al. 2001; Wiart and Darrah 2001). The

2003; Chow et al. 2006a, 2006b; Croce et al. 2001; Tan et al. 2001; Wiart and Darrah 2001). The MABC norms have been evaluated in studies completed in other cultural contexts including Sweden (Rosblad and Gard 1998), Japan (Miyahara et al. 1998), the Netherlands (Smits-Engelsman et al. 1998), Hong Kong (Chow et al. 2001; Chow et al. 2006), Taiwan (Chow et al.), Israel (Engel-Yeger et al. 2010), United States (Van Waelvelde et al. 2008), Greece (Ellinoudis et al. 2008), and Singapore (Wright et

States (Van Waelvelde et al. 2008), Greece (Ellinoudis et al. 2008), and Singapore (Wright et al. 1994). Generalizability across European cul- tures has shown to be satisfactory; however, those studies conducted in Hong Kong, Taiwan, Singa- pore, and Japan suggested some cultural differ- ences existed and that the MABC norms for those countries may need some adjustment (Livesey et al. 2007). In addition to the worldwide recognition that the MABC has, the instrument has been utilized in many

addition to the worldwide recognition that the MABC has, the instrument has been utilized in many international studies covering a broad range of diagnostic categories such as developmental coordination disorder (DCD), learning disabil- ities, and autism spectrum disorder (ASD). Addi- tionally, the MABC has been noted to identify more children with motor impairments more suc- cessfully (e.g., greater sensitivity and specificity) than that of the “gold standard” Bruininks- Oseretsky Test of Motor

sensitivity and specificity) than that of the “gold standard” Bruininks- Oseretsky Test of Motor Proficiency (BOTMP) (Dewey and Wilson 2001), while Crawford et al. (2001) have found that the MABC appears to be more sensitive and is able to better identify chil- dren with additional problems associated with learning or attention.

The authors have revised the MABC to gen- erate the MABC-2, a “reliable, easily adminis- tered and valid measure of competence in three broad and carefully selected areas of motor per- formance” (Henderson et al. 2007, p. 117). The three broad motor skill categories that are assessed are (1) Manual Dexterity, (2) Aiming and Catching, and (3) Balance. Changes under- taken to produce the second edition involved revising existing items and introducing some new items. These changes are outlined in

involved revising existing items and introducing some new items. These changes are outlined in two sections below: test content changes and test structure changes (see Tables 2, 3, and 4 for details). The MABC-2 test content changes are described under three areas: (1) materials, (2) tasks, and (3) instructions:

1. Materials: Brightly colored plastic pieces have been introduced to replace pieces originally made of wood. This change was undertaken to standardize the pieces and eliminate any room for variation between kits as well as taking into account health and safety regula- tions regarding item pieces when used with children in various settings.

2. Tasks: The test has maintained the original structure of the test by retaining eight test items across each age band organized into the three motor skill categories of Manual Dexter- ity, Aiming and Catching, and Balance. How- ever, individual items have been altered as well as new individual items being introduced. The task changes across the age bands are outlined in Tables 2, 3, and 4.

3. Instructions: In previous research articles, the test instructions of the MABC have been called into question. Although no standardized verbal instructions are included in the second edition, clarification of the administration, scoring of the test, and aspects of tasks to emphasize during demonstration have been provided to minimize the potential for ambiguity. The MABC-2 authors state that this provides flex- ibility in the mode of presentation and allows the assessor to ensure the examinee

provides flex- ibility in the mode of presentation and allows the assessor to ensure the examinee under- stands individual tasks.

| Motor skill task | MABCa task age bands 2/3 | MABC-2b task age band 2 | |---|---|---| | Manual dexterity 1 | Placing pegs/shifting pegs by rows | Placing pegs (new starting position and layout) |
| Manual dexterity 2 | Threading lace/threading nuts on bolt | Threading lace (lacing board is longer) |
| Manual dexterity 3 | Flower visual trail/flower visual trail | Drawing trail 2 (shape of visual trail has changed) |

| Aiming and catching 1 | Two-hand catch/one-hand bounce and catch | Catching with two hands |
| Aiming and catching 2 | Throwing beanbag/throwing beanbag into box | Throwing beanbag onto mat (mat with target now used instead of box) |
| Balance 1 | Stork balance/one-board balance | One-board balance | | Balance 2 | Heel-to-toe walking/ball balance | Walking heel-to-toe forward | | Balance 3 | Jumping in squares/hopping in squares | Hopping on mats (mats used for this task) |

MABCa Movement Assessment Battery for Children MABC-2b Movement Assessment Battery for Children, Second Edition  | Motor skill task | MABCa task age band 1 | MABC-2b task age band 1 | |---|---|---| | Manual dexterity 1 | Post coins | Post coins | | Manual dexterity 2 | Threading beads | Threading beads | | Manual dexterity 3 | Bicycle trail | Drawing trail 1 (shape of visual trail has changed) |

| Aiming and catching 1 | Catching beanbag | Catching beanbag | | Aiming and catching 2 | Rolling ball between goal posts | Throwing beanbag onto mat (new item) |

| Balance 1 | One-leg balance | One-leg balance | | Balance 2 | Walking heels raised | Walking heels raised | | Balance 3 | Jumping over cord | Jumping on mats (new item) | MABCa Movement Assessment Battery for Children MABC-2b Movement Assessment Battery for Children, Second Edition  | Motor skill task | MABCa task age band 3 | MABC-2b task age band 3 | |---|---|---| | Manual dexterity 1 | Turning pegs | Turning pegs | | Manual dexterity 2 | Cutting out elephant visual trail with scissors |

pegs | Turning pegs | | Manual dexterity 2 | Cutting out elephant visual trail with scissors | Triangle with nuts and bolts (new item) |

| Manual dexterity 3 | Flower visual trail | Drawing task 3 (shape of visual trail has changed) |
| Aiming and catching 1 | One-hand catch | Catching with one hand | | Aiming and catching 2 | Throwing ball at wall-mounted target | Throwing ball at wall-mounted target |

| Balance 1 | Two-board balance | Two-board balance | | Balance 2 | Walking backward | Walking toe-to-heel backward | | Balance 3 | Jumping and clapping | Zigzag hopping (new item) | MABCa Movement Assessment Battery for Children MABC-2b Movement Assessment Battery for Children, Second Edition  The MABC-2 test structure changes are described under two areas: (1) age extension and (2) reduction of age bands:

1. Age Extension: The MABC-2 has been extended to encompass the assessment of chil- dren aged 3 years 0 months–16 years 11 months. The MABC-2 authors believed that a gap existed for the appropriate motor performance assessment for children aged 3 years. In order to assess children of this age, items were slightly adjusted to ensure the atten- tion of a typical 3-year-old could be maintained as well as being fun, easily understood, and requiring minimal verbal communication. Similarly, as the

well as being fun, easily understood, and requiring minimal verbal communication. Similarly, as the MABC has been utilized and widely recognized for its use with assessment of children with DCD, two sources of requests for suitable motor performance assessments for children aged between 11 and 16 years have been identified. The first is due to the increase in the recognition of DCD as a clinical diagnosis and the importance of early assess- ment, identification, and intervention service provision

and the importance of early assess- ment, identification, and intervention service provision to assist with coordination difficul- ties encountered so as to maximize children’s developmental and motor skills. Current inter- vention for DCD occurs predominantly in dur- ing the primary school years due to the effectiveness of early intervention. However, the MABC-2 authors have noted that an increasing proportion of adolescents have not been identified earlier with coordination difficulties or have

proportion of adolescents have not been identified earlier with coordination difficulties or have failed to benefit from intervention. The second source identified was due to ongoing worldwide research into children who have been born “at risk” of damage to their nervous system (e.g., born prematurely). This group of children exhibit cognitive skills within normal limits and do not meet the diag- nostic criteria for cerebral palsy, but do expe- rience severe difficulties with their motor performance

criteria for cerebral palsy, but do expe- rience severe difficulties with their motor performance which in turn affects their aca- demic progression. Therefore, with the devel- opment and revision of the MABC, the MABC-2 can provide improved motor perfor- mance measurement instrument for younger and older children. This in turn will enable therapists and researchers to develop new intervention techniques, allow for more accu- rate and sound intervention, and provide a greater understanding of

allow for more accu- rate and sound intervention, and provide a greater understanding of motor performance problems and their consequences over time.

2. Reduction of Age Bands: Previously the MABC had 4 ABs; however, pilot work by the test authors provided evidence that existing items could be revised and/or adapted across the extended age bands. Thus, AB1 and the previous AB4 had an age range of 4 years, and so AB2 and AB3 were collapsed in to one age band. Additionally, and perhaps more importantly, the test authors were aware of problems associated with children changing between age bands in the MABC during the course of an intervention

with children changing between age bands in the MABC during the course of an intervention program. Although correlations between similar items across the age bands were high, the authors recognized that they were not perfect. Hence, the final age bands for the MABC-2 are AB1: 3–7 years, AB2: 7–11 years, and AB3: 11–17 years. The Qualitative Observations section remains a part of the MABC-2 test and allows the testing clinician to supplement the formal test results gathered from administering the

allows the testing clinician to supplement the formal test results gathered from administering the Performance Test to a child. A chapter of the manual provides some assistance regarding the process of observa- tion and how to utilize the Qualitative Observa- tions section of the test in conjunction with the formal scores as well as taking into account both motor and non-motor factors that can affect move- ment and a child’s motor performance.

Historical Background The MABC-2 is a composite of two complemen- tary assessments: the Performance Test and the Checklist. The performance-based portion of the MABC-2 was developed from the Test of Motor Impairment (TOMI) (Stott et al. 1972). Develop- ment of the TOMI began in 1966 with a primary focus of identifying impaired or nonstandard motor skill performance. Since the TOMI pro- vided little overall motor ability information about the children who were assessed with it, the TOMI was

little overall motor ability information about the children who were assessed with it, the TOMI was revised in 1984 (see Table 5). This revision, known as the Test of Motor Impairment-Henderson Revision (TOMI-H) (Stott et al. 1984), decreased the number of items that a child was required to complete, added a behavioral checklist, and included room for recording qualitative observations related to children’s motor skill performance. In 1992, the Henderson and Sugden Movement Assessment Battery

children’s motor skill performance. In 1992, the Henderson and Sugden Movement Assessment Battery for Children (MABC) was published and retained the same items as the TOMI-H (see Table 5). However, the MABC was developed as a means of identifying children aged between 4 and 12 years considered being at risk of a motor impairment, and thus, normative data was added, and the scoring criteria and item descriptions were revised. The MABC consisted of 32 tasks that increased in difficulty across four

descriptions were revised. The MABC consisted of 32 tasks that increased in difficulty across four age bands (AB): 4–6 years, 7–8 years, 9–10 years, and 11–12 years. Simultaneously, Keogh (1968), and subsequently Sugden (1972), developed a teacher checklist which served as preliminary to further evaluative assessments of a child’s motor performance and to alert “teachers to the existence of children with movement difficulties” (Henderson et al. 2007, p. 113). Further develop- ment has led to it

with movement difficulties” (Henderson et al. 2007, p. 113). Further develop- ment has led to it becoming the MABC Checklist (Henderson and Sugden 1992; Reynard 1975; Sugden 1972).

| 1. Test of Motor Impairment (TOMI) (Stott et al. 1972) | |---| | 2. Test of Motor Impairment – Henderson Revision (TOMI-H) (Stott et al. 1984) |
| 3. Movement Assessment Battery for Children (MABC) (Henderson and Sugden 1992) |
| 4. Movement Assessment Battery for Children-2 (MABC-2) (Henderson et al. 2007) |

Psychometric Data Types of reliability data often reported for scales, tests, and measures include internal con- sistency, test-retest/time sampling reliability/tem- poral stability, inter-rater/inter-scorer reliability, intra-rater/intra-scorer reliability, alternate form reliability, and split-half reliability (American Educational Research Association [AERA], American Psychological Association [APA], & National Council on Measurement in Education [NCME] 1999; Anastasi and Urbina 1997).

[APA], & National Council on Measurement in Education [NCME] 1999; Anastasi and Urbina 1997). Types of validity often reported for tests include face validity, content validity, criterion-related validity, and construct validity (AERA et al. 1999). Two subtypes of criterion-related validity frequently included are concurrent validity and predictive validity, while subtypes of construct validity often reported include factor analysis validity, discriminant validity, convergent validity, diver-

often reported include factor analysis validity, discriminant validity, convergent validity, diver- gent validity, diagnostic validity, and rating scale validity (Fawcett 2007). Details of the reli- ability and validity of the MABC-2 are reported in its manual. The MABC-2 is a major revision of the well- known and frequently used MABC (Barnett and Henderson 1998; Henderson et al. 2007). The test authors assume that the reliability data and valid- ity information reported for the MABC are gener-

assume that the reliability data and valid- ity information reported for the MABC are gener- alizable to the MABC-2. “Confidence in the MABC-2 score interpretation can be derived not only from the UK standardisation study but also from the extensive validation data reported in this and earlier manuals” (Henderson et al. 2007, p. 132). The MABC and MABC-2 may assess the same motor skill constructs in a similar format, but since the MABC-2 has added four new items, revised some of the retained

in a similar format, but since the MABC-2 has added four new items, revised some of the retained items, reduced num- ber of age ABs (the MABC had 4 ABs, while the MABC-2 has 3), and increased age range that it covers (the MABC-2 now covers ages 3–17 years), it is essentially a new, discrete test that needs to have its own specific measurement properties evaluated singly. This appears to be an inaccurate assumption made by the MABC-2 authors.

The MABC-2 test manual reports some pre- liminary reliability data for its Performance Test based on the results of several studies completed by other investigators that involved experimental versions of the MABC-2 AB1 and AB3 tasks (see Table 6). Visser and Jongmans (2004) investi- gated the test-retest results for the MABC-2 AB1 with a group of 55 3-year-old children from the Netherlands. Chow et al. (2002), in another study involving a sample of 31 adolescents, evaluated the inter-rater and

et al. (2002), in another study involving a sample of 31 adolescents, evaluated the inter-rater and test-retest reliability of a trans- lated version of the MABC-2 AB3 tasks into Chinese. Smits-Engelsman et al. (2008) reported about the inter-rater reliability of the MABC-2. In another inquiry involving 64 young adults, Faber and Nijhuis van der Sanden (2004) examined the intra-rater and inter-rater reliability of a total score calculated for the MABC-2 AB3 tasks originally used by Chow et al.

reliability of a total score calculated for the MABC-2 AB3 tasks originally used by Chow et al. (2002). Details of the trans- lation process for the Chinese version of the MABC-2 AB3 tasks used in the Chow et al. (2002) study were not reported in the test manual. Similarly, it was not reported if the version of the MABC-2 AB1 tasks used in the Visser and Jongmans (2004) investigation was translated into another language since it was used in the Netherlands. The studies completed by Visser and

into another language since it was used in the Netherlands. The studies completed by Visser and Jongmans (2004) and Faber and Nijhuis van der Sanden (2004) are both unpublished manu- scripts, thus have not been peer reviewed nor are they readily accessible for review. The Faber and Nijhuis van der Sanden (2004) study involved 64 young adults aged between 18 and 28 which were outside the age limits of the MABC-2 and the geographical location where the study was completed was not reported. With

of the MABC-2 and the geographical location where the study was completed was not reported. With all of these studies, there are issues of cultural context, trans- lation of the MABC-2 Performance Test items, and only evaluating one AB at a time.

Henderson et al. (2007) reported a test-retest study involving 20 3-year-old children. Pearson product moment correlations ranged from 0.86 to 0.91 for the three Manual Dexterity tasks, while the Aiming and Catching and Balance tasks were less reliable with coefficients of 0.48 and 0.68. The test authors suggested that the test-retest reli- ability problems lie with younger children, aged between 3 and 4 years. In another study completed by the test authors, the test-retest reliability of the

3 and 4 years. In another study completed by the test authors, the test-retest reliability of the whole test involving all three ABs was completed. Sixty children, 20 from each AB, were included. Using the standard scores for the three test sec

standard because of the many changes that occur during preschool years in autism.
 4. Educational approaches to autism must include provision of information to families as well as ongoing consultation and individualized problem-solving and an opportunity to learn techniques for teaching their children new skills and reducing difficult behaviors. Families’ concerns and perspectives should help shape educational planning.

5. Ongoing measurement of treatment objec-tives and progress must be documented fre-quently and interventions adjusted accordingly. Objectives should be accomplished within a year, and interventions or objectives should be changed if there is little progress in 3 months. Objectives should be behaviors that are anticipated to affect a child’s participation in education, the com-munity, and/or the family and include gener-alization across environments.

6. Educational services should begin as soon as a child is suspected to have an autism spec-trum disorder. Services should include a min-imum of 25 h a week, 12 months a year in which a child is engaged in systematically planned, developmentally appropriate educa-tional activities directed toward identified objectives. What constitutes these hours and how structured the interventions are may vary dramatically depending on the child’s age and abilities, the priorities, and supports available to a

depending on the child’s age and abilities, the priorities, and supports available to a family within a community but should be specified individually for each child.

7. Priorities of focus are functional spontaneous communication, social instruction delivered throughout the day in various settings, cogni-tive development, play, and academics (when appropriate). As much as is appropriate for an individual child, specialized instruction should take place in a setting in which ongo-ing positive social interactions can occur with typically developing children.

8. Coordinated, systematic strategies should be developed to fund interventions in local communities and schools so that the cost is not borne by parents, caregivers, or local school systems and so that there is continuity of care.

9. A federal joint agency task force should be created to address policy issues related to autism spectrum disorders (see US Interagency Autism Coordinating Council; http://iacc.hhs.gov/). It was recommended to the Office of Special Education Programs that personnel preparation programs for teaching of children with autism be accelerated.

10. Standards for adequate description and design for intervention studies were recommended in order to allow more useful interpretation of results, particularly given the range of skills of children with autism. A call was made for stricter requirements to tie mea-sures of efficacy to program development in autism.

11. Comparisons of different interventions were prioritized as well as the development of research designs that identify the “active ingredients” of interventions and that con-sider interactions between child and family variables and the effectiveness of different approaches.

Major Activities The NRC Committee on the Effectiveness of Early Intervention was a committee convened only for this specific project and so is no longer in effect. The National Research Council, along with the Institute of Medicine and National Acad-emy of Engineering, continues to provide reports and makes recommendations as charged by the National Academy of Science and the US federal government on other issues.

Definition Natural Environment Intervention (NEI) or Natural Environment Training (NET) is a language intervention approach for children with autism that was developed by Sundberg and Partington (1999) based upon Skinner’s Analysis of Verbal Behavior (1957). NET represents an extension of ABA and discrete trial training approaches. In a manner similar to Pivotal Response Training and Milieu Language Teaching, NET emphasizes the use of intrinsically motivating materials, focuses on the child’s

Teaching, NET emphasizes the use of intrinsically motivating materials, focuses on the child’s immediate interests (following the child’s lead), and teaches in the child’s everyday environment. This type of approach addresses child motivation and generalization issues by using materials that are reinforcing for the child and teaching within the same contexts that skills will be used. In addition, by making available materials that are reinforcing to the child, NET focuses on allowing the child

by making available materials that are reinforcing to the child, NET focuses on allowing the child to initiate teaching episodes to improve manding (requesting) and to increase the initiation of spontaneous communi-cation attempts.

Natural History ▶Course of Development ▶Longitudinal Research in Autism  Natural Language Paradigm Lisa Shull Division of Neurodevelopmental and Behavioral Pediatrics, Golisano Children’s Hospital, University of Rochester School of Medicine, Jamaica, NY, USA

Clinical Psychology, Long Island University, Brooklyn, NY, USA  Definition The Natural Language Paradigm (Koegel et al. 1987) is a teaching approach targeting verbal lan-guage acquisition for children with severe lan-guage deficits associated with autism. Compared to more structured behavioral treatments (e.g. discrete trial teaching), this loosely struc-tured intervention aims to create a learning envi-ronment for the child that more closely resembles a natural language speaking situation and

envi-ronment for the child that more closely resembles a natural language speaking situation and apply teaching approaches based on operant condition-ing in that environment. This combination is intended to increase and generalize the child’s use of communicative speech across settings.

Historical Background NLP has its origins in work on incidental teaching conducted in the 1960s (e.g., Hart and Risley 1968, 1974). In the 1980s, Risley and McGee (McGee et al. 1983, 1985) began studying ways to adapt incidental teaching for children with autism. Combining this work and research by Koegel, Schreibman, and others on the unique learning styles of these children (e.g., a tendency to focus on only one component of a complex stimulus), Koegel and colleagues developed the Natural

to focus on only one component of a complex stimulus), Koegel and colleagues developed the Natural Lan-guage Paradigm. They presented it as an alternative to more structured operant teaching procedures (e.g. Hewett 1965; Lovaas 1966, 1977). Although there was evidence that these structured procedures were effective in teaching vocabulary and other language skills, many argued that they did not demonstrate sufficient generalized improvement in functional speech. In an effort to address this

demonstrate sufficient generalized improvement in functional speech. In an effort to address this inadequacy, researchers started to explore other ways to teach communication, such as sign lan-guage and symbol language. This shortcoming also served as the impetus for NLP. As the treatment evolved, the developers focused increasingly on enhancing children’s motivation and later recast NLP as Pivotal Response Treatment or PRT (Koegel et al. 1989, 1999).

Rationale or Underlying Theory The rationale for the Natural Language Paradigm is largely derived from past research indicating that children with autism spectrum disorders often lack the motivation necessary to communi-cate or learn new skills (e.g. Dunlap 1984; Dunlap and Egel 1982). The intervention strategies, such as the use of reinforcers directly related to the communication (e.g., giving a child access to an item that he or she has requested), the reinforce-ment of all attempts to

a child access to an item that he or she has requested), the reinforce-ment of all attempts to communicate, the frequent variation and sharing of tasks and stimulus mate-rials, and the use of incidental teaching all are designed to contribute to increasing the child’s motivation to interact and communicate with the therapist. The presumption is that, once the child understands, he or she is able to control access to a desired item or situation through initiating and responding to verbal

able to control access to a desired item or situation through initiating and responding to verbal communication, his or her motivation to use language increases.

Additionally, the developers of NLP regard each of these strategies as a key component of the language acquisition process that typically developing children go through. By refocusing the treatment on more naturally occurring speech interactions, rather than structured or didactic behavioral teaching methods, NLP aims to increase the generalization of language skills to settings outside of the clinic (Koegel et al. 1987).

Goals and Objectives The intervention is designed to increase the child’s use of spontaneous and appropriate lan-guage, encourage the generalization of these skills to other settings, and increase social interactions and child-initiation of activities.

Treatment Participants Ideal treatment participants meet criteria for autism as defined in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiat-ric Association 1994) and demonstrate severe lan-guage deficits and delays associated with the disorder. These children are generally classified as nonverbal, meaning they produce no spontane-ous words or utterances, but may produce other types of vocalizations (Koegel et al.). The partic-ipants in the few studies specifically

other types of vocalizations (Koegel et al.). The partic-ipants in the few studies specifically examining the NLP have been children between 4 and10 years of age (Koegel et al.; Delprato 2001).

Treatment Procedures NLP is designed as an individualized therapy that closely approximates the interactions and compo-nents present in a natural speaking situation. To accomplish this, the therapist presents a series of play trials using several stimulus items that have been previously selected by the child. These items are varied between trials and should be familiar to the child from his or her everyday environment. At the beginning of each trial, the therapist presents an item and then

her everyday environment. At the beginning of each trial, the therapist presents an item and then models appropriate verbal responses and play actions with the stimulus items to prompt the child to use speech. All of the child’s attempts at verbal communication are repeated and expanded upon by the therapist and reinforced with praise and opportunities to play with the stimulus item.

Efficacy Information Due to the relatively brief existence of the NLP in its original form, efficacy information is somewhat limited. In the original comparative study, each subject participated in both the analog teaching condition and the NLP condition consecutively. Koegel and colleagues reported that subjects, after treatment with the NLP, demonstrated “steady and durable increases in both immediate and deferred utterances,” while these same subjects showed less, if any, improvement in

immediate and deferred utterances,” while these same subjects showed less, if any, improvement in these areas while in the analog teaching condition. More importantly, these gains were maintained and gen-eralized to situations outside of the clinical setting by subjects treated with the NLP, but not by those in the analog teaching condition. Later studies comparing naturalistic language approaches to tra-ditional behavior treatments reported similar results (Delprato 2001), which served to

to tra-ditional behavior treatments reported similar results (Delprato 2001), which served to confirm the findings from the initial study by Koegel et al.

However, because the studies on NLP have involved on a small number of subjects and focused on a very narrow range of communication skills, general conclusions cannot be drawn regard-ing the relative efficacy of NLP compared to other teaching approaches (Goldstein 2002, JADD).

Outcome Measurement Treatment outcomes for the NLP intervention have most often been measured using spontane-ous language samples, or “probes,” throughout the course of treatment. Probes assess the total number of utterances emitted by the child over a specified period of time and are conducted in a variety of settings, including intervention ses-sions, break periods, and during free play. The child’s utterances are coded and categorized as one three types: imitative, deferred imitation, or

child’s utterances are coded and categorized as one three types: imitative, deferred imitation, or spontaneous (Koegel et al.).

Qualifications of Treatment Providers In Koegel and colleagues’ initial study, the clini-cians administering the NLP intervention were supervised hearing and speech students with advanced training in behavior modification and language treatment.

Naturalistic Interventions Kristen Ashbaugh1 and Robert L. Koegel2,3 1Koegel Autism Center, University of California, Santa Barbara, CA, USA 2Koegel Autism Center/Clinical Psychology, Gevirtz Graduate School of Education, University of California, Santa Barbara, CA, USA
3Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA, USA

Definition Naturalistic interventions are behavior teaching procedures that occur in the context of naturally occurring activities (Koegel et al. 1987; McGee et al. 1984; Vismara and Rogers 2010). Interven-tion procedures embed teaching opportunities within the environment where the skills will be needed (Vismara & Rogers).

Historical Background Individuals with an autism spectrum disorder exhibit deficits in communication, social interac-tion, and restricted and repetitive behavior (American Psychiatric Association [APA] 2000). Intensive early intervention programs have been shown to produce positive outcomes in a large percentage of the children diagnosed as having autism (Paul 2008; Harper et al. 2008). However, Carr (1983) reviewed behavior modification pro-cedures for language instruction of children with

Carr (1983) reviewed behavior modification pro-cedures for language instruction of children with autism and identified a weakness in many operant language programs. In intervention strategies employed in highly structured environments, treatment gains that were observed in the clinic rarely generalized to other settings and behaviors were not often maintained (Mirenda-Linne and Melin 1992). Many operant language pro-grams also frequently resulted in cue dependency, rote responding, and little

operant language pro-grams also frequently resulted in cue dependency, rote responding, and little spontaneity of the target behavior (Miranda-Linne & Melin). Furthermore, treatment programs that did succeed in improving language skills required a great amount of time for even a minimal vocabulary (Koegel et al. 1987).

In response to these difficulties, many researchers investigated new behavioral interven-tions. In a study by Koegel et al. (1987), the effects of a traditional analog approach were com-pared to a natural language teaching condition (Koegel and Koegel 2006). The analog approach consisted of many successive trials, with each item chosen and presented by the clinician until the child reached a specific criterion (Koegel et al. 1987). In the natural language paradigm, proce-dures were modified to

criterion (Koegel et al. 1987). In the natural language paradigm, proce-dures were modified to follow a more natural language-speaking situation and incorporated child choice, maintenance tasks, rewarding attempts to respond, and natural reinforcers directly related to the task (Koegel et al.). It was shown that children in the natural language con-dition had a higher rate and accuracy of correct responding, a greater increase in spontaneous utterances, and a greater generalization of lan-guage

responding, a greater increase in spontaneous utterances, and a greater generalization of lan-guage skills outside of the clinic setting (Koegel and Koegel 2006).

In 1986, the Congress issued a federal mandate PL 99-457 to provide early intervention for young children with disabilities in the least restrictive and most typical environments of the children (Kaiser and Trent 2007). Subsequent research has expanded the benefits of naturalistic interven-tions and has addressed the limitations of analog procedures

rewiring of the brain in response to social stimuli can further examine whether PRT may be benefi-cial in increasing the brain’s overall efficiency at processing meaningful social information. In a sample of 19 high-functioning school-aged chil-dren with ASD, Venkataraman et al. (2016) eval-uated co-occurring regions that showed changes in functional connectivity that accompanied aggregated functional change in response to bio-logical motion in the posterior cingulate cortex (PCC) following 16

change in response to bio-logical motion in the posterior cingulate cortex (PCC) following 16 weeks of PRT. The authors found notable changes in brain circuitry associ-ated with processing and assignment of reward values to external stimuli implicated by reduced functional connectivity to orbitofrontal cortex (OFC), as well as circuitry associated with facial recognition implicated by increased functional connectivity to occipital-temporal cortex. Taken together, PRT is shown to elicit both

functional connectivity to occipital-temporal cortex. Taken together, PRT is shown to elicit both normalized trajectories of brain response to social stimuli both at the regional and brain circuitry level, suggesting there may be improved neural effi-ciency in processing socially salient information in children with ASD.

### Predictors of Responder Profile  In addition to addressing how treatment may elicit change at the individual level, incorporating neuroimaging tools can also help to characterize neural profiles that might predict, at baseline, an individual’s response to treatment. Identifying neural predictors of treatment response can guide clinicians to select more appropriate treatments for individuals with ASD, and to maxi-mize the cost and time efficacy for eliciting positive therapeutic gains.

with ASD, and to maxi-mize the cost and time efficacy for eliciting positive therapeutic gains. Furthermore, identifying neural predictors of treatment response and the corresponding behavioral profiles can increase cli-nicians’ awareness of areas that may be more treat-ment resistant, and require greater care when formulating treatment plans to develop effective strategies targeting such areas without breaching fidelity of treatment protocol. From a neuroimaging perspective, it is possible to

without breaching fidelity of treatment protocol. From a neuroimaging perspective, it is possible to conduct a retrospective regression analysis to assess how brain activation in response to social stimuli at baseline might predict the magnitude of improvement in social function-ing following treatment, thus identifying possible neural predictors of treatment response.

Monitoring changes in brain response to biolgoical motion, Yang et al. (2016) conducted regression-based multivariate pattern analyses (MVPA) to decode how unique distributions of voxel activation pattern at baseline within neural networks can be associated with the efficiency of social cognitive processing. The authors found that response to BIO>SCR in four neural clusters at baseline subsequently predicted the magnitude of increase in social competency following 16 weeks of PRT in 20 children

predicted the magnitude of increase in social competency following 16 weeks of PRT in 20 children with ASD, which included areas such as the STS, superior parietal lobule, FG, vmPFC, VS, and putamen. Functionally, the identified brain areas cor-responded to a range of social and cognitive functions including motion and object recogni-tion, emotion regulation and response inhibition, visuospatial attention, and reward process-ing. Furthermore, the authors utilized a cross-validation design and

attention, and reward process-ing. Furthermore, the authors utilized a cross-validation design and found that the MVPA model of pretreatment response trained using one cohort of patient data was able to successfully predict changes in social functioning in a second independent cohort of patient data, suggesting that neural predictors identified may be generalizable across children with ASD. However, treatment specificity to PRT of the biomarkers identified could not be assessed, as the authors did

treatment specificity to PRT of the biomarkers identified could not be assessed, as the authors did not include an alternative treatment group for compar-ison, which warrants further attention. Despite the limitation, the successful implementation of MVPA by integrating fMRI and behavioral data has shown a promising first step for moving toward the goal of identifying who will most likely benefit from PRT among children with ASD, a major obstacle en route to establishing precision medicine in

from PRT among children with ASD, a major obstacle en route to establishing precision medicine in psychiatry.

### Implications and Future Directions  In summary, research evaluating neural signatures of treatment response has many valuable clinical implications. Characterizing neural signatures that can both objectively quantify and show qualitative differences in trajectories of change over the course of treatment can help clinicians to better monitor progression toward treatment goals for each patient, as well as more flexibly adapt the dosage, intensity, and treatment targets tailored to meet

as well as more flexibly adapt the dosage, intensity, and treatment targets tailored to meet individuals’ needs in a more time-efficient manner. Furthermore, deter-mining responder neural profiles to treatment at baseline is important, especially in children where brain plasticity and windows of opportunity become increasingly sparse over the course of development, further enhancing the difficulty for interventions to effectively elicit therapeutic changes. Expanding clinical research to better

for interventions to effectively elicit therapeutic changes. Expanding clinical research to better characterize neural signatures that predict response to treatment can help guide clinicians when selecting an appropriate intervention type for the individual in question, and therefore serve as an important clinical tool in future pediatric psychiatry.

To further widen the evidence base for neural signatures of treatment response, as well as to increase the dissemination of affordable ways to identify reliable neural signatures of treatment response to the community, future directions and considerations are outlined. Current advancements in identifying neural signatures of PRT have solely relied on the use of fMRI, which provides good spatial resolution to help identify brain regions of interest. However, fMRI is very expensive and lacks

resolution to help identify brain regions of interest. However, fMRI is very expensive and lacks good temporal resolution to resolve the sequence of subprocesses underlying any neural response. A practical implication to consider is the relatively low success rate for young children with ASD to complete fMRI scans, even after extensive training and preparation, as they often show elevated levels of head motion that affect the quality of images collected for analyses. Therefore, future research

of head motion that affect the quality of images collected for analyses. Therefore, future research should continue to look to integrate other more cost-effective neuroimaging tools with enhanced temporal resolution and higher success rates for completion, such as EEG and eye-tracking, to gain insight into not only which areas might serve as neural signatures of treatment response, but how these atypical neural activations might sequentially interact to affect overall neural effi-ciency in the

atypical neural activations might sequentially interact to affect overall neural effi-ciency in the processing of social stimuli. One limitation of the current published find-ings is that participants have been high-functioning children with ASD (IQ > 70). Future studies should use larger samples with more het-erogeneous symptomatology and a wider range of cognitive levels, to examine the generalizability of results to lower-functioning children with ASD. Another major limitation is the lack of

of results to lower-functioning children with ASD. Another major limitation is the lack of inclusion of either a waitlist control group, or a group that receives an alternative form of intervention. Inclu-sion of a waitlist control group of children well-matched on ASD symptomatology, age, IQ, and gender is critical to ensure that neural signatures showing changes in response to social stimuli are truly reflective of the therapeutic effects of the target intervention, rather than associated with

truly reflective of the therapeutic effects of the target intervention, rather than associated with general effects of development over the passage of time. Future studies should also include strin-gent control groups to better address the question of specificity of neural signatures of treatment response in children with ASD. Furthermore, inclusion of an alternative form of intervention will address the question of specificity of the neu-ral signatures identified, to determine whether they are

the question of specificity of the neu-ral signatures identified, to determine whether they are predictors of treatment response specific to PRT, or whether they may be neural signatures more broadly reflective of improved social cogni-tion following interventions that target social skills in children with ASD. All of these future developments will further advance the field of clinical research toward the goal of developing precision medicine in pediatric psychiatry.

### See Also  *   Behavior Therapy *   Biological Motion *   Event-Related Functional Magnetic Resonance Imaging (MRI) *   Social Cognition *   Social Interventions  Neurexin 1 Ellen J. Hoffman Albert J. Solnit Integrated Training Program, Yale Child Study Center, Program on Neurogenetics, Yale School of Medicine, New Haven, CT, USA

### Synonyms  NRXN1  ### Definition  Neurexin 1 (NRXN1) is a candidate gene in autism spectrum disorders (ASD). NRXN1 is one of three members of the neurexin gene family, which encodes a group of cell adhesion molecules that are found at the synapses of nerve cells. Each neurexin gene can produce two types of neurexin proteins, both a long and a short version, which are referred to as α- and β-neurexins, respectively. Inter-estingly, the structure of neurexin genes is such that it is possible

respectively. Inter-estingly, the structure of neurexin genes is such that it is possible for one gene to generate many different protein isoforms due to the alternative splicing of RNA transcripts. This means that combinations of neurexin isoforms can result in tremendous diversity at synapses at the molecular level (Sudhof 2008). There is growing interest in neurexins because they bind to neuroligins, another family of cell adhesion molecules that have been strongly impli-cated in ASD.

neuroligins, another family of cell adhesion molecules that have been strongly impli-cated in ASD. Specifically, neurexins are present in the presynaptic region, while neuroligins are found postsynaptically, i.e., on the opposite side of the synapse. The interaction of neurexins and neuroligins is likely to play an important role in the formation of synapses. Moreover, neuroligins interact within the postsynaptic cell with members of the SHANK family of proteins, which have also been found in

the postsynaptic cell with members of the SHANK family of proteins, which have also been found in independent studies to be can-didate genes in ASD (e.g., SHANK3) (Sudhof 2008). Taken together, the identification of NRXN1 and neuroligins, such as Neuroligin 4, X-linked (NLGN4X), as candidate genes indicates that cell adhesion molecules found at the synapse, and synaptic functioning in general, may repre-sent common pathways in the biology of ASD.

A number of studies have implicated NRXN1 in ASD. These studies identified rare variants disrupting NRXN1 in affected individuals at level of the DNA sequence and at the structural level in chromosomes (Feng et al. 2006; Glessner et al. 2009; Marshall et al. 2008; Szatmari et al. 2007). Three of these studies used genome-wide, array-based cytogenetics to identify copy number vari-ants (CNVs) associated with ASD. One study found a 300 kilobase deletion, which occurred de novo, disrupting NRXN1

with ASD. One study found a 300 kilobase deletion, which occurred de novo, disrupting NRXN1 in two affected female siblings (Szatmari et al. 2007), and other identified deletions disrupting NRXN1 that were inherited by affected individuals (Glessner et al. 2009). CNVs disrupting NRXN1 were not found in unaffected individuals (Glessner et al. 2010; Szatmari et al. 2007). Another study identified CNVs at NRXN1 in individuals with ASD that were de novo and inherited (Marshall et al. 2008). However,

at NRXN1 in individuals with ASD that were de novo and inherited (Marshall et al. 2008). However, this study also reported finding structural variation at NRXN1 in a control popu-lation (Marshall et al. 2008). The strength of the rare variant approach taken by these studies is that finding outliers which occur at a frequency of <5% in the general pop-ulation favor the discovery of mutations with rela-tively large effect sizes. However, because these mutations are by definition rare, they are

rela-tively large effect sizes. However, because these mutations are by definition rare, they are likely to occur in only a very small proportion of individ-uals with idiopathic ASD (State 2010). In addi-tion, neurexins and neuroligins have been implicated in other psychiatric disorders. CNVs affecting NRXN1 have been identified in individ-uals with schizophrenia, such that NRXN1 is also considered a risk gene for schizophrenia (Kirov et al. 2009). Moreover, as discussed, CNVs disrupting this

a risk gene for schizophrenia (Kirov et al. 2009). Moreover, as discussed, CNVs disrupting this gene have been found in unaffected individuals as well (Marshall et al. 2008). While these findings are difficult to interpret, they are consistent with pleiotropy as an emerging theme in the genetics of ASD. According to this model, variation in risk genes may predispose to a range of clinical presentations due to interactions with other genetic and environmental factors (State 2010). Most

presentations due to interactions with other genetic and environmental factors (State 2010). Most importantly, the identification of can-didate genes, such as NRXN1, has the potential to illuminate common biological mechanisms that underlie these disorders. Therefore, the identifica-tion of neurexins and neuroligins as risk genes has led investigators to focus on studying synapse function as a potential common pathway that may contribute to the biology of a range of psy-chiatric disorders in

potential common pathway that may contribute to the biology of a range of psy-chiatric disorders in addition to ASD.

### See Also  *   Common Disease-Rare Variant Hypothesis *   Neuroligins *   Pleiotropy *   SHANK 3  Neuroanatomy Kate McFadden Department of Pathology, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA
 ### Definition  Neuroanatomy is the study of the structure (morphology) and organization of the nervous system. Numerous morphometric studies have implicated perturbations in the processes of neo-cortical growth and organization in the develop-ment of autism.

### Historical Background  Most of what we know about the neuroanatomy of autism is derived from two sources: neuropatho-logic analyses of autistic brain tissue and struc-tural MRI studies of populations of living patients with autism. By far, the latter provide us with the most information as MRI provides a noninvasive methodology allowing anatomic analysis of the whole brain in a large sample at multiple time points. Despite these potential advantages, early structural MRI studies of autism

at multiple time points. Despite these potential advantages, early structural MRI studies of autism have been ham-pered by small, cross-sectional samples and dif-fering techniques in the face of great clinical heterogeneity and change over the developmental span. For practical reasons, most imaging studies have been performed on higher-functioning adults with autism (a diagnosis of autism cannot usually be made until at least 2 years of age). Therefore, there is scant representation of the

usually be made until at least 2 years of age). Therefore, there is scant representation of the developmental periods (gestation and infancy) in which most brain abnormalities seem to emerge in autism (see below). Furthermore, because most studies are restricted to high-functioning individuals with autism, existing differences could theoretically be too subtle to detect. However, despite variable and inconsistent findings, some intriguing patterns have emerged (see Amaral et al. 2008; Lainhart

and inconsistent findings, some intriguing patterns have emerged (see Amaral et al. 2008; Lainhart 2006; Schumann and Nordahl 2011; and Stanfield et al. 2008 for excellent reviews).

### Current Knowledge  Autism and its clinically similar spectrum disor-ders (ASDs) are now conceptualized as develop-mental neurobiological disorders affecting elaboration of the forebrain circuitry that under-lies those abilities most unique to human beings. The development of neural circuitry depends upon the coordinated interactions of numerous genetic/molecular cascades and environmental/ experiential exposures. At the basic level, the physical substrate of neural circuitry is provided by

exposures. At the basic level, the physical substrate of neural circuitry is provided by neurons, their processes (axons and dendrites), and their synapses on neighboring or distant neu-rons. Wiring the brain requires that neurons pro-liferate, acquire the correct laminar identities, migrate to the appropriate locations, extend axons which must make guidance decisions with a high degree of spatial and temporal fidelity, and finally, establish synaptic connections with appro-priate target neurons.

and temporal fidelity, and finally, establish synaptic connections with appro-priate target neurons. Neuropathologic studies have reported subtle abnormalities in multiple brain regions (cerebral cortex, cortical white mat-ter, limbic structures, brainstem, and cerebellum), indicating more than one of the abovementioned pre- and early postnatal developmental processes may be altered in various combinations to produce the heterogeneous phenotypes observed in ASD. Most of the information we have

to produce the heterogeneous phenotypes observed in ASD. Most of the information we have concerning the physical or anatomic substrate of altered con-nectivity in ASD comes from clinical studies using magnetic resonance imaging (MRI). Struc-tural MRI studies have uncovered ample evidence of altered developmental growth trajectories as well as size differences both of the whole brain and specific structures/compartments in substantial subsets of adults and children with ASD (reviewed in Lainhart

in substantial subsets of adults and children with ASD (reviewed in Lainhart et al. 2006). Most striking is the finding of early overgrowth of the brain in ASD. While not significantly different from controls at birth, up to 70% of infants with ASD exhibit abnormally accelerated brain growth in the first year of life followed by a relative deceleration in age-related growth in some. This is particularly marked in the frontal and temporal cortices and the amygdala. While these findings strongly

marked in the frontal and temporal cortices and the amygdala. While these findings strongly indicate altered events in brain development, there is no way to directly attribute the gross findings to these events as MRI technology currently lacks the required resolution. Therefore, complementary neuropath-ologic studies of postmortem brain tissue are nec-essary to directly examine alterations in brain microarchitecture which (presumably) reflect the neurobiological underpinnings of ASD at the

brain microarchitecture which (presumably) reflect the neurobiological underpinnings of ASD at the neu-ronal level. “Complementary” because there are both advantages and drawbacks to tissue-based research relative to structural MRI studies. Histo-logic studies allow a greater degree of resolution, i.e., the ability to examine neuronal structure, distribution, and gene/protein expression within the same individual. However, they are often more laborious and time consuming, making integrated

the same individual. However, they are often more laborious and time consuming, making integrated analysis of the whole brain prohibitive. Despite these difficulties, recent efforts have yielded some fascinating patterns, outlined by region below.

#### Increased Head/Brain Size (Macrocephaly/Macroencephaly)  Studies examining head circumference (HC) and brain volume (by MRI) in autistic infants and children have demonstrated an abnormal develop-mental trajectory associated with autism. One of the most consistent neuroanatomic findings in ASD, derived from both structural MRI and post-mortem studies, is an abnormally enlarged brain in a significant subset of young children with autism. Retrospective studies of head circumfer-ence (HC) in

subset of young children with autism. Retrospective studies of head circumfer-ence (HC) in the fetal (Hobbs et al. 2007) and perinatal (Courchesne and Pierce 2005) periods have generally reported little difference between infants destined to be diagnosed with autism and control infants. However, by 2–4 years of age, average HC and brain volume (BV) are signifi-cantly (10–15%) increased in up to 70% of chil-dren with autism. Up to 25% of children in this subset actually meet formal criteria for

of chil-dren with autism. Up to 25% of children in this subset actually meet formal criteria for macro-cephaly (HC ≥ 2.0 S.D. above the mean) and/or megalencephaly (BV ≥ 2.5 S.D. above the mean) (Aylward et al. 2002; Courchesne et al. 2001; Redcay and Courchesne 2005; Sparks et al. 2002). These findings are interpreted to be the result of early abnormal growth of the brain in the first 2 years of life before autism is diagnosed. While not yet confirmed directly, recent evidence strongly indicates

before autism is diagnosed. While not yet confirmed directly, recent evidence strongly indicates this is the case. One large-scale, longitudinal study (Hazlett et al. 2011) found no difference in growth rates between autis-tic children and controls from the age of 2 years until 4–5 years. Rather, abnormal brain enlarge-ment was already established by the age of 2 in a significant subset of their sample and remained unchanged by the age of 4–5. Interestingly, a recent neuropathologic study of

sample and remained unchanged by the age of 4–5. Interestingly, a recent neuropathologic study of seven autistic children (Courchesne et al. 2011) found that brain overgrowth in these individuals involved a 67% increase in the numbers of neurons in the prefrontal cortex relative to age-matched controls. Neurogenesis, the birth and early proliferation of neurons, is largely a prenatal process. At birth, cortical neurons are typically small so that an appreciable excess might not translate into a

cortical neurons are typically small so that an appreciable excess might not translate into a sig-nificant change in head size. However, in the first years of life, the typical dramatic increase in cyto-plasmic volumes (both of the cell body and axons/ dendrites) occurring in more than the usual com-plement of frontal neurons could account for abnormally accelerated brain growth in the first years of life. The first 2 years of life are usually a period of rapid brain growth in infants as neurons

of life. The first 2 years of life are usually a period of rapid brain growth in infants as neurons undergo significant postnatal growth in cell size and elaboration (actually overproduction) of axons, synapses, and dendrites. The degree of overgrowth appears to be correlated with severity of symptoms (Courchesne et al. 2001, 2003).

Following the initial period of rapid growth, growth rates in autism tend to decline significantly causing an apparent “normalization” of BV by ado-lescence/early adulthood (Redcay and Courchesne 2005). The functional significance of this is unknown as up to one third of individuals with autism may clinically deteriorate during this period while others may make significant gains in func-tioning. Mean HC remains slightly elevated into adulthood, and rates of macrocephaly, although lower, do remain

HC remains slightly elevated into adulthood, and rates of macrocephaly, although lower, do remain increased overall. It must be noted that the above pattern does not hold true for all individuals with autism. Many show typical rates of head and brain growth, and a small subset even meet criteria for microencephaly, although this is more common in the setting of syndromic autism.

#### Gray and White Matter Compartments  Many investigators have attempted to determine which aspects of brain anatomy (i.e., gray or white matter compartments or structures/regions) contrib-ute most to altered brain size in autism. It must be noted that GM and WM are not separate entities biologically as WM contains the myelinated axons of the neurons whose cell bodies reside in GM regions/structures. Many have noted an overall rostral-caudal (front to back) gradient in early brain growth

Many have noted an overall rostral-caudal (front to back) gradient in early brain growth trajectories. At the time of maximal brain growth during infancy and early childhood, Courchesne et al. (2001) found that cerebral gray matter (GM) and white matter (WM) were both increased by 18% and 38%, respectively. The frontal cortical GM and WM showed the most enlargement followed by the temporal lobe GM and WM and the parietal GM. The occipital GM and WM and parietal GM tended not to vary

lobe GM and WM and the parietal GM. The occipital GM and WM and parietal GM tended not to vary significantly from controls. Within the frontal lobes, the GM areas most affected were the dorsolateral and mesial prefrontal cortex (Carper and Courchesne 2005). Similarly, the white matter most affected appears to be the radiate compartment immedi-ately underlying these same prefrontal cortical areas (Herbert et al. 2004), whereas deeper WM and sagittal/bridging white matter (e.g., corpus callosum

(Herbert et al. 2004), whereas deeper WM and sagittal/bridging white matter (e.g., corpus callosum and internal capsule) are not enlarged. This suggests overgrowth of later-myelinating, intrahemispheric (corticocortical) connections (originating from layer III neurons) with relative sparing of the interhemispheric (layer III) and cor-tical to subcortical (layers V and VI) connections. After childhood, WM is no longer increased relative to typically developing controls although GM volumes remain

WM is no longer increased relative to typically developing controls although GM volumes remain elevated. It is therefore thought that “normalization” of BV may be due to a decrease in WM relative to GM, a complete reversal of the age-dependent cortical thinning that typically occurs during this period. Cerebral GM thinning is thought to be a sign of increasing maturity and is generally attributed to the concurrent processes of synaptic pruning and myelination. Excess (presumably weaker or

to the concurrent processes of synaptic pruning and myelination. Excess (presumably weaker or imprecise) connections are eliminated during this period as both axon collaterals and terminal arbors are pruned through retraction or degeneration. This is necessary to develop precise functional connections and provide a substrate for neural plasticity. This process may be aberrant in autism, although this has not been demonstrated directly.

#### Cortical Surface Area/Thickness  Other cortical aspects, such as thickness, surface area, and gyration patterns, have been investi-gated by MRI and may provide important insights into the developmental mechanisms implicated in autism. Cortical thickness is a function of multiple factors, such as neuronal density, dendritic arborization, myelination, or sharpness of the gray-white junction, operating in various combi-nations. One study of cortical thickness (Hardan et al. 2006) reported a

operating in various combi-nations. One study of cortical thickness (Hardan et al. 2006) reported a global increase in cortical thickness in 8–12-year-old autistic children, most pronounced in the parietal and temporal cortices. Other studies have, conversely, found thinning in the same cortical areas in adults. Early overgrowth followed by later loss may be a trend in critical development in autism, but until more large-scale, longitudinal studies are conducted, this remains speculative.

autism, but until more large-scale, longitudinal studies are conducted, this remains speculative. Cortical surface area also seems to be expanded early in autism. In their study of 59 young autistic children, Hazlett et al. (2011) found cortical gray matter volume increases appeared to be due to increased surface area rather than cortical thickness. Similarly, Hardan, Jou, Keshavan, Varma, and Minshew (2004) found an increase in cortical gyration in the frontal lobe. As folding is related to

Minshew (2004) found an increase in cortical gyration in the frontal lobe. As folding is related to surface area, this finding implicates increased surface area. Abnor-mal morphology of the sylvian fissure, superior temporal sulcus, and inferior frontal gyrus have also been reported. Cortical surface area is generally thought to be a function of the number of early, symmetric divisions by radial glial cells immediately prior to the onset of neurogenesis and migration. Minicolumns are the vertical

cells immediately prior to the onset of neurogenesis and migration. Minicolumns are the vertical cell columns created by sequential waves of migrating neurons traveling along radial glial fibers during early corticogenesis. It may be that reports of increased numbers of narrow minicolumns (Buxhoeveden et al. 2006; Casanova et al. 2006) in the frontal cortex of autistic brains may be related to these differences in surface area.

#### Corpus Callosum  Volumetric studies of the corpus callosum have consistently found decreased total, anterior, mid-dle, and/or posterior callosal volumes in children and adults with autism (e.g., Hardan et al. 2000). This may serve to impede interhemispheric con-nectivity, thereby contributing to the clinical fea-tures of autism. These findings are relatively robust when controlling for IQ, BV, and gender.

#### Limbic System  Decreased hippocampal volumes have been reported in some high-functioning children, adoles-cents, and adult males with autism relative to age-matched controls and corrected for BV (e.g., Saitoh et al. 2001). The amygdala, likely involved in social cognition functions such as empathy or theory of mind, has been found to be relatively enlarged in children and adolescents with autism but that this difference tends to decrease with age. Furthermore, the degree of early

with autism but that this difference tends to decrease with age. Furthermore, the degree of early enlargement appears to be neg-atively correlated with later social and communica-tive functioning (Munson et al. 2006). Interestingly, these findings may correspond to the neuropatho-logic findings of Kemper and Bauman (1993), who reported smaller, more packed neurons with attenuated dendritic arbors in many structures of the limbic system (particularly the amygdala, hippo-campus, entorhinal cortex,

many structures of the limbic system (particularly the amygdala, hippo-campus, entorhinal cortex, and mammillary bodies) in autistic children.

#### Cerebellum  By far, the most consistent finding in neuropatho-logic studies of postmortem autism brain samples is a reduction in the density of cerebellar Purkinje neurons of the cerebellar cortex (Bailey et al. 1998; Kemper and Bauman 1993; Palmen et al. 2004, and many others), although there is no discernable clinical correlate of this abnormality. Kemper and Bauman first described a decrease in the number of Purkinje cells in all the autistic brains they analyzed regardless of age. This

in the number of Purkinje cells in all the autistic brains they analyzed regardless of age. This was particularly marked in the posterior-lateral part of the lateral lobes. The neurons of the deep cerebel-lar nuclei (the targets of Purkinje cell projections) were abnormally large in younger individuals and abnormally small, and sometimes reduced in number, in older individuals. It must be noted that these studies have not been strictly stereo-logic and not always replicated. For instance,

that these studies have not been strictly stereo-logic and not always replicated. For instance, Fatemi et al. (2002) reported no difference in Purkinje neuron density but did note an approxi-mately 25% reduction in cell size. Whitney et al. (2009) found that only a proportion of their cases of ASD showed reduced Purkinje cell densities as well as decreases in basket and stellate cell densi-ties. Wegiel et al. (2010) reported variable occur-rences of cerebellar flocculonodular dysplasia, focal

Wegiel et al. (2010) reported variable occur-rences of cerebellar flocculonodular dysplasia, focal vermal dysplasia, cerebellar hypoplasia, and cerebellar heterotopias, indicating that evi-dence of altered neuronal migration could also be found in this structure.

#### Brain Stem  Kemper and Bauman (1993) reported similar alterations in the inferior olive as detected in the septum and deep cerebellar nuclei. Younger ASD brains exhibited unusually large neurons in the inferior olive, whereas in the adult cases, these neurons were small and pale. The overall numbers of inferior olivary neurons were similar to controls in both instances but tended to be concentrated at the nuclear periphery – the part of the complex that projects to the posterior-lateral

at the nuclear periphery – the part of the complex that projects to the posterior-lateral part of the lateral lobes of the cerebellum. The synaptic rela-tionship between the olivary and Purkinje neurons is established at approximately 28 weeks of ges-tation and is tight to the point that if Purkinje cells die for some reason, there is retrograde loss of the corresponding olivary neurons. Therefore, they reason, the “loss” of Purkinje neurons in ASD predates the formation of this relationship as

they reason, the “loss” of Purkinje neurons in ASD predates the formation of this relationship as olivary neuronal numbers do not appear to be reduced. While the mechanism for this is not understood, the age-related changes in neuronal size in the cerebellar nuclei, inferior olive, and septum are evidence of ongoing alterations in developmental processes, at least before adult-hood. Bailey et al. (1998) reported olivary dyspla-sia or ectopic olivary neurons in five cases of ASD.

### Future Directions  In conclusion, relatively consistent neuropatho-logic observations in autism have included early increased brain size associated with increased numbers of prefrontal neurons, more densely packed smaller neurons in the limbic system, decreased numbers of cerebellar Purkinje neu-rons, and features of neuronal lamination/migra-tion disturbances – all of which may be traced to prenatal disturbances in brain development. The identification of substantial trends is actually

to prenatal disturbances in brain development. The identification of substantial trends is actually quite remarkable given the staggering heterogeneity in core and comorbid clinical features of ASD and demonstrates the great promise neuropathologic studies hold for identifying the elusive develop-mental neurobiological underpinnings of altered connectivity in ASD.

For this promise to be fulfilled, future studies will have to be increasingly systematic – employing rigorous stereologic and molecular neuropathologic methods, e.g., large-scale as well as single-cell gene and protein expression analyses. This will require larger samples of ASD brain tissue, derived from a broader age range, in order to provide the necessary statistical power to contend with distinct clinical and genetic subphenotypes as well as dynamic changes observed over the developmental

clinical and genetic subphenotypes as well as dynamic changes observed over the developmental lifespan by structural MRI. Fortunately, significant trends toward this goal are already evident in recent literature, fueled by noteworthy improvements in the availability and quality of ASD postmortem brain tissue through efforts such as the Autism Tissue Project.

### See Also  *   Amygdala *   Cerebellar Abnormalities in Autism *   Corpus Callosum Abnormalities in Autism *   Prefrontal Cortex *   Purkinje Cells *   Temporal Lobes  Neurophysiology Karen Burner and Raphael Bernier Department of Psychology, University of Washington, Seattle, WA, USA Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA  ### Synonyms  Electrophysiology; Psychophysiology  ### Structure  Neural Structures Implicated Through Neurophysiological

Psychophysiology  ### Structure  Neural Structures Implicated Through Neurophysiological Assessment in ASD. The study of neurophysiology in ASD has impli-cated specific brain structures, such as the superior temporal sulcus in association with processing biological movement, the fusiform gyrus in rela-tion to face processing, the anterior cingulate cor-tex in relation to joint attention abilities, and the cerebellum in attention and engagement, among others. Neurophysiological studies have also

and the cerebellum in attention and engagement, among others. Neurophysiological studies have also implicated brain regions such as the limbic sys-tem, including the amygdala and hippocampus in relation to affective processing and memory, the mirror neuron system in relation to action under-standing and imitation, and the ventromedial pre-frontal cortex in association with stimulus-reward associations.

### Function  Neurophysiology concerns the study of the func-tions of the nervous system. Neurophysiological measures are utilized to examine both brain structures and neural pathways. Methods such as electroencephalography, electromyography, and assessment of skin conductance provide informa-tion about various aspects of the nervous system including sensory, motor, and cognitive function-ing. Neurophysiological studies provide impor-tant information about the connections between brain

Neurophysiological studies provide impor-tant information about the connections between brain structures and systems as well as what areas and networks of the brain may be impacted in individuals with disabilities such as autism spec-trum disorder.

#### Electroencephalography (EEG)  One of the primary methods for studying neural pathways in the brain is electroencephalography (EEG), which is the measurement of electrical activity produced by the brain. EEG is recorded from the scalp and is a noninvasive method of measuring postsynaptic neuronal activity. EEG recordings reflect the propagation of electrical activity to the scalp from the synchronous activa-tion of a specific population of neurons. EEG can provide important information about

activa-tion of a specific population of neurons. EEG can provide important information about the functioning of neural networks. EEG oscilla-tory activity, measured by the frequency and amplitude of synchronized neural activity, reveals information about the state of the brain. Evoke potentials (EPs) and event-related potentials (ERPs) are the result of averaging EEG activity to examine time-locked responses to the presen-tation of a stimulus (visual, somatosensory, or auditory). EEG coherence

responses to the presen-tation of a stimulus (visual, somatosensory, or auditory). EEG coherence refers to the functional connectivity of neural networks measured by the relation of signals over distal neuronal regions. EEG is a noninvasive technique in which the individual wears an electrode net on the scalp while observing/listening to stimuli or simply resting. EEG has excellent temporal resolution but relatively poorer spatial resolution compared to other imaging modalities. EEG studies of

but relatively poorer spatial resolution compared to other imaging modalities. EEG studies of indi-viduals with ASD allow us to better understand the timing of brain functioning, alterations in rest-ing and active brain states, and potential under-and overconnectivity of the brain. EEG studies can be designed such that individuals do not need to make a behavioral, motor, or vocal response, allowing for the use of the method across age groups, cognitive and verbal function-ing, and the autism

for the use of the method across age groups, cognitive and verbal function-ing, and the autism spectrum. In addition, it has the added benefit of being able to examine neuro-nal processing over time to better understand the stages of processing of a phenomenon.

#### Electrooculogram (EOG)  By recording activity from electrodes placed around the eye, eye movements can be carefully characterized and studied. Eye movement studies provide information about the cortical and subcor-tical regions of the brain that control eye move-ment activity. For instance, studies that examine saccadic (e.g., fast) eye movements are able to assess frontal brain regions as well as the brain stem and cerebellum, whereas voluntary eye movements and pursuit eye movements

as well as the brain stem and cerebellum, whereas voluntary eye movements and pursuit eye movements (used for visual tracking) can determine if anterior and posterior regions are involved. These basic visual processes can also be studied using eye tracking.

#### Electromyography (EMG)  EMG is a noninvasive technique used to measure and record the electrical activity of skeletal mus-cles. This has implications for neurophysiological functioning through the use of experimental par-adigms. Fear potential startle response (FPS) is a noninvasive psychophysiological methodology that has been widely utilized in the non-ASD population to facilitate better understanding of amygdala functioning. In FPS, a sudden onset of an acoustic, visual, or tactile

understanding of amygdala functioning. In FPS, a sudden onset of an acoustic, visual, or tactile stimulus elicits a startle response. Acoustic startle amplitude can be enhanced by exposure to a conditioned stimu-lus that was paired with an aversive stimulus. This conditioned stimulus or signal produces a state of fear that potentiates the startle response and increases reflexive behavior. The threat cue primes an individual for response, creating a fear state, manifested by an exaggerated

threat cue primes an individual for response, creating a fear state, manifested by an exaggerated startle reflex to any suddenly imposed stimulus (Lang et al. 2000). The startle response is characterized by a fast series of muscle contractions around the head, neck, and shoulders; the first, fastest, and most stable component in this reaction is a sudden closure of the eyelid (Minshew et al. 1999). Inten-sity of the startle response is measured by electro-myographic activity of the orbicularis

Inten-sity of the startle response is measured by electro-myographic activity of the orbicularis muscle during the eyeblink, or blink magnitude (Lang et al. 1990).

#### Skin Conductance  The assessment of the electrical conductance of the skin, which varies with its moisture level, is called skin conductance or the galvanic skin response (GSR). The measurement of GSR pro-vides insight into physiological arousal levels and the sympathetic nervous system as the sweat glands are controlled by the sympathetic nervous system.

#### Electrocardiography (ECG)  ECG is the measurement of heart rate and blood pressure.  #### Magnetoencephalography (MEG)  MEG is a method of recording neural activity by recording magnetic fields produced by electrical currents in the brain. MEG records neuronal activ-ity directly and has high temporal (<1 ms) and spatial resolution (1–5 mm), making it a useful tool for neurophysiological research. MEG can be used to examine temporal correlations or coher-ence within a particular brain

research. MEG can be used to examine temporal correlations or coher-ence within a particular brain region or across regions as well as auditory processing deficits in ASD.

### Pathophysiology  #### Visual Processing  Individuals with ASD have often been described as having altered perceptual processing. An ERP study of children with ASD found a faster early visual component (C1) (thought to be generated by the primary visual cortex) to simple sinusoidal luminance patterns compared to typically matched controls (Milne and Scope 2008). This is thought to reflect faster visual perceptual detec-tion in individuals with ASD, suggesting that activity in the primary

visual perceptual detec-tion in individuals with ASD, suggesting that activity in the primary visual cortex may be enhanced compared to typically developing indi-viduals. However, individuals with ASD may demonstrate perceptual impairment in extrastriate cortex (V2). Studies have found that individuals with ASD show decreased specialized processing of visual frequencies, decreased extrastriate activ-ity, and reduced perceptual boundary detection (Vandenbroucke et al. 2008; Boeschoten et al.

activ-ity, and reduced perceptual boundary detection (Vandenbroucke et al. 2008; Boeschoten et al. 2007). Bertone et al. (2005) suggest that individ-uals with ASD have difficulties with integration of visual information. Eye movement studies have found that chil-dren with ASD make more saccades in passive viewing tasks than typically developing children (Kemner et al. 1998). Minshew et al. (1999) found that adults with ASD had significant abnormali-ties in volitional eye movements, indicating

found that adults with ASD had significant abnormali-ties in volitional eye movements, indicating fron-tal dysfunction rather than cerebellum dysfunction since visually guided saccades (which are governed by the cerebellum) were normal. These findings suggest that the basic attentional and sensorimotor system may be intact in ASD and that difficulties in attention shifting may be due to frontal dysfunction and executive functioning abilities. Studies of pursuit eye move-ments, which rely on

dysfunction and executive functioning abilities. Studies of pursuit eye move-ments, which rely on multiple brain systems, pro-vide insight into functional connectivity in ASD. A study of pursuit eye movements found bilateral pursuit deficits in individuals with ASD, suggesting that there may be abnormalities in connectivity in the sensorimotor domain possibly due to abnormal brain maturation (Takarae et al. 2004).

#### Face Processing  ERPs can be used to better understand both low-level perceptual processing of faces as well as more complex cognitive processing. Young chil-dren with ASD show delayed social processing of faces but intact processing of objects. Webb et al. (2010) found that 18–30-month-old children with ASD had ERP responses to familiar and unfamil-iar faces that were more similar to younger neurotypical children; the authors suggested that ERPs could be used to document the nature of

neurotypical children; the authors suggested that ERPs could be used to document the nature of delays in basic social processing. This response changes in development similar to neurotypicals, but may continue to be delayed. Electrophysio-logical studies have also found altered patterns of early stage components when adolescents and adults with ASD process faces such as a slowed N170 (an ERP component that is evoked to faces in typically developing individuals) (McPartland et al. 2004; O’Connor

that is evoked to faces in typically developing individuals) (McPartland et al. 2004; O’Connor et al. 2007), but not when the eye region was cued before stimulus onset (Webb et al. 2010). Overall, ERP studies of indi-viduals with ASD suggest both abnormal pro-cessing speed and cortical organization for processing faces both in early and later stage processing components, but mixed results in adulthood when compensatory strategies may allow more normative brain activation.

#### Facial Emotion Processing  ERPs allow examination of the neural network underlying emotional processing by measuring brain responses to emotionally salient stimuli. ERP studies of younger children with ASD sug-gest delayed processing speed and atypical recruitment of cortical areas for processing facial emotion. Dawson, Webb, & Carver, Panagiotides, and McPartland (Dawson et al. 2004) found that 3–4-year-old children with ASD showed a slower early brain response to fear faces and failed

that 3–4-year-old children with ASD showed a slower early brain response to fear faces and failed to show a larger amplitude, negative slow wave response to fearful faces seen in typically devel-oping children. In addition, children with ASD who exhibited a faster early component pro-cessing speed demonstrated better social atten-tion, suggesting a relationship between speed of processing emotional stimuli and social attention impairments in children with ASD. This finding suggests early ASD is

stimuli and social attention impairments in children with ASD. This finding suggests early ASD is associated with abnormal processing of facial expressions of emotion and that these abnormalities begin at early stages of processing. In older children, differential pro-cessing of emotions via ERPs has not shown pervasive impairments in ASD. Wong et al. (2008) found normal patterns of ERP and behav-ioral responses to emotional expressions. How-ever, using source localization, the children with ASD

responses to emotional expressions. How-ever, using source localization, the children with ASD showed slower and weaker responses to emotional expressions in regions responsible for face perception and emotion processing (Wong et al. 2008).

#### Connectivity  Theories of ASD have conceptualized the disor-der as an impairment in connections among neural systems (Belmonte et al. 2004; Rippon et al. 2007; Courchesne and Pierce 2005; Just et al. 2004). EEG measures of coherence assess communica-tion across neural populations by examining spon-taneous activity across predefined frequency bands that represent the speed of neural oscilla-tions; these frequencies include delta (< 4 Hz), theta (4–8 Hz), alpha (8–12 Hz), beta 1 (12–20 Hz),

these frequencies include delta (< 4 Hz), theta (4–8 Hz), alpha (8–12 Hz), beta 1 (12–20 Hz), beta 2 (20–30 Hz), and gamma (30–80 Hz). An examination of cortical connec-tivity in adults with autism found globally reduced EEG coherence in the alpha range in the frontal lobe but increases in the theta range in the tempo-ral region (Murias et al. 2007). This finding sug-gests that there is overconnectivity in the frontal region but that the frontal lobe has weak func-tional connections with the

in the frontal region but that the frontal lobe has weak func-tional connections with the rest of the cortex. EEG coherence studies in children with ASD report decreased coherences in delta, theta, and alpha ranges, suggesting underconnectivity (Coben et al. 2008; Isler et al. 2010). MEG studies of connectivity have found mixed results, with some studies finding decreased connectivity in individuals with ASD (Muñoz-Yunta et al. 2008; Rojas et al. 2008) and another finding no differences between

with ASD (Muñoz-Yunta et al. 2008; Rojas et al. 2008) and another finding no differences between individ-uals with ASD and a control group in a simple evoked-response task (Coskun et al. 2009). Mean-while, a MEG study examining coherence during an executive functioning task found decreased synchronization in the prefrontal cortex in the ASD group but increased synchronization in the parietal cortex (Velazquez et al. 2009). These findings provide support for abnormal functional connectivity with

(Velazquez et al. 2009). These findings provide support for abnormal functional connectivity with evidence supporting both a decreased or increased connectivity theory of ASD.

#### Imitation  The assessment of power in the mu frequency range has been used as a neurophysiological examination of imitation. The EEG mu rhythm is typically defined as brain activity oscillating in the 8–13-Hz frequency range recorded via cen-trally located scalp electrodes. When an individ-ual is at rest, the underlying cell assemblies fire synchronously, but when an individual executes and, importantly, observes an action, the cell assemblies activate which attenuates the mu rhythm

and, importantly, observes an action, the cell assemblies activate which attenuates the mu rhythm amplitude. As a result of this consistent finding, it has been suggested that mu rhythm attenuation reflects activity of the mirror neuron system (Pineda 2005). Given the proposed role of the mirror neuron system in the neurobiology of imitation (Iacoboni 2009), examination of the EEG mu rhythm provides a noninvasive assess-ment of neurological activity playing a role in imitative ability. An EEG

a noninvasive assess-ment of neurological activity playing a role in imitative ability. An EEG assessment imitation in adults with autism found that individuals with autism showed intact mu rhythm functioning (attenuation of the EEG mu rhythm) when exe-cuting movement but atypical activity (reduced attenuation) when observing actions compared to typical adults (Bernier et al. 2007). Further, imi-tation skills were associated with more attenuation when observing actions for both individuals with

skills were associated with more attenuation when observing actions for both individuals with autism and typical individuals, suggesting that the neurological circuitry reflected in the mu rhythm play a significant role in imitative ability.

#### Attention and Disengagement  A study examining attention processing found that when task load was increased, children and adolescents with ASD showed increased early responses to unattended (visual) probes and failed to show normal reduction of processing to attended (auditory) probes. Additional studies have found that children with ASD demonstrate reduced attention ERP components when attend-ing to targets in the periphery (Kemner et al. 1999; Townsend et al. 2001; Verbaten et al.

attend-ing to targets in the periphery (Kemner et al. 1999; Townsend et al. 2001; Verbaten et al. 1991). These studies suggest that individuals with ASD may have subtle impairments in the integrative stages of attentional allocation. Neurophysiological studies of attentional dis-engagement have found abnormalities of disen-gagement in adults with ASD (Kawakubo et al. 2007) and children with ASD (Kikuchi et al. 2010). In this study, typically developing children exhibited a larger

with ASD (Kikuchi et al. 2010). In this study, typically developing children exhibited a larger saccade-related ERP compo-nents when viewing faces compared to children with ASD, whereas disengagement from objects did not differ between individuals with ASD and controls. These results support previous results of face processing deficits in ASD and suggest that disengagement from faces may require a higher level of cortical recruitment than disengagement from objects in individuals with ASD.

#### Auditory Processing  Neurophysiological methods provide insights into early lexical and semantic processing deficits observed in individuals with ASD. An auditory component (P450) was reduced in individuals with ASD and also was associated with increased EEG gamma power, which the authors suggested was indicative of abnormal inhibitory control (Orekhova et al. 2008). A study of brainstorm responses to speech syllables found that individ-uals with autism had deficient pitch tracking,

responses to speech syllables found that individ-uals with autism had deficient pitch tracking, suggesting subcortical abnormalities contributing to prosody-encoding deficits (Russo et al. 2008). ERP studies have found abnormalities in neu-ral processing of semantic information in children with ASD. Dunn and colleagues found that chil-dren with ASD failed to elicit an electrophysio-logical component (N400) indicative of detection of semantic incongruency (e.g., a mismatch) between animal and

(N400) indicative of detection of semantic incongruency (e.g., a mismatch) between animal and nonanimal words suggestive of semantic classification impairments (Dunn and Bates 2005; Dunn et al. 1999). Another ERP study aimed to examine if this deficit was limited to the verbal domain and found that high functioning children with ASD showed no electrophysiologi-cal index of the detection of semantic incongru-ence (i.e., no N400 effect) in response to words that mismatched the pictures;

of semantic incongru-ence (i.e., no N400 effect) in response to words that mismatched the pictures; participants did show this N400 effect for nonverbal, environmen-tal sounds. These results suggest a semantic abnormality specific to the verbal domain (McCleery et al. 2009). Other ERP studies report decreased component amplitude in response to repetitive speech, but not to repetitive nonspeech, and decreased orienting to novel tones in the sequence of speech sounds, but not in a sequence of

and decreased orienting to novel tones in the sequence of speech sounds, but not in a sequence of tones (Whitehouse and Bishop 2008). These results suggest that inhibition occurs in individ-uals with ASD to repeated streams of speech. MEG studies have also proved useful in under-standing auditory and language processing diffi-culties in AS. A magnetoencephalography (MEG) study found an electrophysiological signature in detecting auditory processing deficits in children who have ASD and other

signature in detecting auditory processing deficits in children who have ASD and other language disorders (Roberts et al. 2008). In addition, MEG studies assessing auditory cortex functioning have found that children with ASD have reduced gamma band power (Rojas et al. 2008) and abnormal left-hemispheric gamma oscillations (Wilson et al. 2007).

#### Executive Functioning  Neurophysiological studies have also uncovered underlying neural abnormalities to executive functioning deficits often observed in individuals with ASD such as perseverative responding, ste-reotyped repetitive behaviors, and an inability to accurately monitor ongoing behavior. Henderson et al. (2006) found that highly verbal children with ASD displayed reduced error-related negativity (ERN) amplitudes in response to an executive function task than control children,

negativity (ERN) amplitudes in response to an executive function task than control children, consistent with difficulties in self-monitoring ongoing behavior in social settings. A study examining response monitoring found that adults with ASD showed reduced error-related negativity and pos-itivity amplitudes and reduced rostral anterior cin-gulate cortex (ACC) activation compared with controls and that reduced ACC activation was associated with increased social impairments and autism symptoms

that reduced ACC activation was associated with increased social impairments and autism symptoms (Santesso et al. 2011). The authors suggest that the anterior cingulate cortex may be implicated in the social impairments observed in ASD. Another study examining error monitoring also found reduced ERN local-ized in the ACC (Sokhadze et al. 2010). Finally, an ERP study found a reduced error-related neg-ativity and positivity to an auditory task, indicat-ing an insensitivity to detect the

neg-ativity and positivity to an auditory task, indicat-ing an insensitivity to detect the possibility of errors (Vlamings et al. 2008). Together, these results suggest general impairment in self-monitoring and other executive functioning abili-ties underlying social and behavioral difficulties in ASD.

#### Reward Processing  Researchers have suggested that individuals with ASD have reduced social motivation such that they do not properly anticipate and appreciate the pleasure of social stimuli. Behavioral studies have also shown that children with ASD have difficulty learning stimulus-reward associations for both social and nonsocial rewards (Dawson et al. 1998). Event-related brain potential (ERP) studies aimed at assessing reward anticipation (initiated by cue signals) and a potential

(ERP) studies aimed at assessing reward anticipation (initiated by cue signals) and a potential reward-ing outcome employed a modified go/no go para-digm. During this paradigm, a salient, motivating stimulus elicits a larger amplitude in the ERP component, P3. An ERP study of reward incen-tive found that children with ASD did not exhibit a bigger P3 to reward compared to nonreward stimuli, irrespective of reward type (social vs monetary) (Kohls et al. 2011). These results sug-gest that

irrespective of reward type (social vs monetary) (Kohls et al. 2011). These results sug-gest that individuals with ASD have an atypical motivation-related brain response to reward cues that may be suggestive of a general reward pro-cessing deficit rather than social reward dysfunc-tion. No behavioral differences were found in this study, suggesting that neurophysiological methods may be more sensitive than behavioral measures at identifying abnormal reward processing.

#### Amygdala Functioning  Atypical amygdala function has been implicated in the development and maintenance of emotional and social impairments in ASD. The amygdala and its interconnections with other brain regions play a crucial role in perceiving emotional stimuli, appraising novel situations, detecting danger, and modulating fear response. Amygdala function can be assessed via a fear conditioning paradigm known as fear potentiated startle (FPS). Thus far, findings fail to find differences in

paradigm known as fear potentiated startle (FPS). Thus far, findings fail to find differences in potentiated star-tle response in individuals with ASD compared to control groups (Bernier et al. 2005; Salmond et al. 2003), despite strong implications for amygdala dysfunction in the disorder.

### See Also  *   Amygdala *   Auditory Potentials *   Brainstem Auditory Evoked Potentials *   Electroencephalogram (EEG) *   Event-Related Potential *   Evoked Potentials *   Eye Gaze *   Face Perception *   Functional Connectivity *   Limbic System *   Mirror Neuron System *   Mu Rhythm *   Neuroanatomy *   Neuropathology *   Visual Evoked Potential (VEP)  Neuroscience Kevin A. Pelphrey Harris Child Study Center, Yale University School of Medicine, New Haven, CT, USA  ### Synonyms  Neural

Child Study Center, Yale University School of Medicine, New Haven, CT, USA  ### Synonyms  Neural science; Neurobiology  ### Definition  Neuroscience is the scientific study of the nervous system and the ways in which the nervous system gives rise to behavior and cognition. Neurosci-ence is developed as a subfield or branch of biol-ogy. As such, the term neurobiology has often been used interchangeably with neuroscience. Neuroscience as a field has evolved as a highly interdisciplinary field or

with neuroscience. Neuroscience as a field has evolved as a highly interdisciplinary field or science of its own that incorporates techniques and concepts from many distinct fields outside of biology proper including chemistry, computer science, engineer-ing, linguistics, genetics, mathematics, medicine (especially psychiatry), philosophy, physics, and psychology. Neuroscientists work at many levels of the nervous system from the molecular to the neural systems level, and they address many kinds

of the nervous system from the molecular to the neural systems level, and they address many kinds of questions ranging across the molecular, cellu-lar, developmental, structural, functional, evolu-tionary, computational, and medical aspects of the nervous system. The techniques used by neuro-scientists have evolved rapidly, from molecular and cellular studies of individual nerve cells to imaging of sensory and motor tasks in the brain, to computational modeling of neural networks. These

of sensory and motor tasks in the brain, to computational modeling of neural networks. These technological advances have revolution-ized the study of neural systems and their devel-opment in the living, thinking, human brain.

### See Also  *   Cerebral Cortex  Neurotransmitter George M. Anderson Laboratory of Developmental Neurochemistry, Yale Child Study Center, Yale University, New Haven, CT, USA

### Definition  A chemical released by neurons that is involved in the transmission of neural impulses or that affects the transmission in some way. Neurotransmitters are typically contained in synaptic vesicles and upon neuronal stimulation are released at the ter-minals of neurons into the synapse or gap between neurons. They then diffuse rapidly across the syn-apse and interact with receptors on the postsynap-tic neuron. Neurotransmitters can also bind to autoreceptors found on the

on the postsynap-tic neuron. Neurotransmitters can also bind to autoreceptors found on the releasing neuron and thereby modulate their own release and synthesis. Major classes of neurotransmitters include acetyl-choline; the monoamines, including serotonin, dopamine, norepinephrine, and histamine; the amino acid neurotransmitters, including gluta-mate and GABA; the neuropeptides; and the gas-eous transmitters including nitric oxide, carbon monoxide, and hydrogen sulfide.

### See Also  *   Serotonin  Neurotypical Danielle Perszyk Yale Child Study Center, New Haven, CT, USA  ### Synonyms  Control; Normal; Typical; Typically developing  ### Definition  Description of a medically and psychologically healthy individual demonstrating a normative pat-tern of neurodevelopment. Typically used specif-ically in contrast with individuals experiencing an atypical developmental course, such as autism, and often used to describe the control group in clinical research. Its

course, such as autism, and often used to describe the control group in clinical research. Its use varies from scientific publications (Cashin 2006) to tongue-in-cheek descriptions highlighting the subjective nature and valenced language often employed in research on social behavior (Larsen 2010).

New Zealand and Autism Peter W. Dowrick and Holly Smith University of Auckland, Auckland, New Zealand Psychology Department, University of Canterbury, Christchurch, New Zealand  ### Historical Background  The current autism picture in Aotearoa New Zealand is similar to that of other technolog-ically developed countries in the Western hemi-sphere. That is, the identification of autism, especially high functioning autism, has sky rocketed in the last 15 years because resources and full enrolment

high functioning autism, has sky rocketed in the last 15 years because resources and full enrolment in schools from age 5 have allowed identification to increase. (Aotearoa is the indigenous Maori name for NZ.) The picture has not always been this way, as NZ did not follow the recognition of autism from Leo Kanner (1943) or Hans Asperger (1991/1944) until the mid-1960s. At that time, child psychia-trist Mildred Creak visited New Zealand on her way to Perth Australia (Feinstein 2011). She had

Mildred Creak visited New Zealand on her way to Perth Australia (Feinstein 2011). She had established the first (9-pt) behavioral observation checklist in London Hospital, and she brought current understanding of autism (and some clini-cal services) to NZ. This led to the setting up by families of a unit within the IHC (then the Society for Intellectually Handicapped Children). From these beginnings, also in the 1960s, with international stimulation, New Zealander Marion Bruce founded the

also in the 1960s, with international stimulation, New Zealander Marion Bruce founded the Autistic Association (Manson and Stace 2016), now known as Autism New Zealand, a nongovernmental organization with over 6,000 members – families and profes-sionals, in many branches headquartered in Auck-land (Autism New Zealand 2017). They provide parent training, supported employment, special tuition, some professional support, and informa-tion on “Autism Spectrum Disorders including Asperger’s

some professional support, and informa-tion on “Autism Spectrum Disorders including Asperger’s Syndrome.” Currently they work with limited government funding and their waiting lists are long; for example, they are reluc-tant to recommend Discrete Trial Training because the waiting list is nearly 2 years (Autism New Zealand 2017). Another NGO, Altogether Autism, was established in 2007 by the Ministry of Health, as a spinoff from the Parent-to-Parent Network. It provides somewhere to go for

Ministry of Health, as a spinoff from the Parent-to-Parent Network. It provides somewhere to go for families with unusual or extreme cases to seek support (Altogether Autism 2017). The IHC has provided support for the full range of intellectual disabilities in children since 1949 (IHC 2017). It now supports thousands of children and adults. Historically, this support has included individuals with autism, but the contract ended in March 2017, with responsibility trans-ferred to a relatively new

autism, but the contract ended in March 2017, with responsibility trans-ferred to a relatively new provider of individual-ized supports Explore Specialist Advice (2017). IHC has been notable for its rejection by its founders of large institutions, and of all institu-tions since the 1950s, thanks to the dedication of Harold and Margaret Anyon, founders of IHC, whose son had an intellectual disability (New Zealand History 2017). In 1959, the NZ branch of the British Medical Association pub-licly

(New Zealand History 2017). In 1959, the NZ branch of the British Medical Association pub-licly opposed the use of large institutions for those with intellectual disabilities. Consequently, the IHC received government funding to provide community-based services (New Zealand History 2017). Between 1980 and 2006, all major institu-tions were phased out.

### Legal Issues, Mandates for Service  The Ministries of Health and Education have the possibly awkward joint responsibility for services and support for autism-related conditions. On the positive side, they have commissioned the devel-opment of the New Zealand Autism Spectrum Dis-order Guideline (2008, revised in 2016), following the Curry Report (1998). This document (Ministry of Health 2016) provides evidence-based informa-tion concerning people “on the autism spectrum” for families and

provides evidence-based informa-tion concerning people “on the autism spectrum” for families and professionals. A process was set up for regular updates over time. Since 2014, children and adults with ASD have been eligible for a full range of support services (Ministries of Health and Education 2016). Eligi-bility and subsequent access to state-funded ser-vices are determined by various work groups of the Ministry of Health. Currently, services are available (funded) only for children and

groups of the Ministry of Health. Currently, services are available (funded) only for children and adoles-cents with ASD and for adults who also have an intellectual disability. The recommendation that specialist diagnostic assessments be available for all ages has yet to be acted upon – see the NZ ASD Guideline (Ministry of Health 2016). At the moment, there is no legislation in Nigeria directed at guiding or mandating services for indi-viduals with ASD specifically. However, the Child Rights

at guiding or mandating services for indi-viduals with ASD specifically. However, the Child Rights Act provides for the rights of children to education, health, and other social needs. Though this law has been poorly implemented across the nation, Nigeria adopted the Child Rights Act in 2003. The law incorpo-rates the principles of the United Nations Convention on the Rights of the Child, providing a framework for preventing and responding to violence abuse, neglect, and exploitation of

providing a framework for preventing and responding to violence abuse, neglect, and exploitation of children. To date, only 23 of the 36 states in Nigeria have adopted the law, with predominantly Northern Nigerian States Legislative Assemblies yet to accept it (UNICEF Nigeria 2017). In the Nigerian States where the law has been adopted, it has also been poorly implemented, as many cases of violation of children’s rights go unreported and unpunished because of reluctance in challenging such

of children’s rights go unreported and unpunished because of reluctance in challenging such cases in courts of law (UNICEF Nigeria 2017; Bakare et al. 2009a). While the Child Rights Act may address the social and policy needs of children with ASD, adults with ASD in Nigeria may have some relief in the nearest future because of the recent passage and accent to Nigeria Disability Law that is meant to protect the rights of persons with serious neurodevelopmental disabilities (Pulse.ng 2019). The

to protect the rights of persons with serious neurodevelopmental disabilities (Pulse.ng 2019). The rights of adult with ASD ideally would be taken care of by the Nigeria Disability Law if it is subjected repeatedly to judicial tests to reinforce acceptance of the Law by the general populace. Negative cultural and social issues are among the factors hindering the full implementation of Child Rights Act and may affect acceptance of Nigeria Disability Bill as well. A lot of public health education

Act and may affect acceptance of Nigeria Disability Bill as well. A lot of public health education is still needed to effect change in perception and behavior towards people with disabilities in Nigeria.

### Overview of Current Treatments and Centers  Treatment and management of any disease condition is often influenced by health behavior of the people, which in turn is a function of attributed etiological explanations. Close to 50% of Nigerian populace, especially in rural communities still attributed the etiology of ASD to spiritual causes (Bakare and Munir 2011a). Hence, the tendency for parents and relatives of children with ASD to seek succor from traditional and religious healers as first

and relatives of children with ASD to seek succor from traditional and religious healers as first point of contact before seeking help from orthodox practitioners (Bakare and Munir 2011a). Traditional practice and interventions for ASD in Nigeria are available at Psychiatry and Pediatric facilities of National and States Teach-ing Hospitals, Specialized Psychiatric Hospitals, and General Hospitals spread across the 36 States of Nigeria and Federal Capital territory in Abuja. Pockets of privately

spread across the 36 States of Nigeria and Federal Capital territory in Abuja. Pockets of privately owned Hospitals spread across the country and also provide traditional interventions. Treatments offered in these settings focus largely at alleviating associated problem behaviors and treating medical co-morbidities like seizure disorders and attention deficit hyperactivity disorder symptoms, among other disruptive or injurious behaviors. In view of the fact that majority of cases of ASD

among other disruptive or injurious behaviors. In view of the fact that majority of cases of ASD presenting to such orthodox practices have tendency for late diagnosis, arising from late or delayed iden-tification (Bakare and Munir 2011a), and the fact that period of onset of ASD in Nigeria and most sub-Saharan African settings coincide with period of neurological infections and com-plications like cerebral malaria, meningitis, kernicterus among others, cases of ASD seen in Nigerian hospitals

cerebral malaria, meningitis, kernicterus among others, cases of ASD seen in Nigerian hospitals and clinics are often in the severe end of the autism spectrum with attendant neurological problems presenting as medical co-morbidities, intellectual disability, and lack of expressive language ability (Bakare and Munir 2011c).

Treatment Centers available in Nigeria that the patients and their relatives present to can be categorized as follows: Traditional Healers: Based across the country, especially in the rural communities, the tradi-tional healers provide a form of psychological support or comfort that compound the problem of early identification and intervention. Religious Healers: These include mostly Alfas and Pentecostal Churches that often promise spiritual healing and exorcism. Such centers provide support

Churches that often promise spiritual healing and exorcism. Such centers provide support and reassurance, and false hope, resulting in delaying presentation in health settings in most cases. Private Homes/Schools and Non-Governmental Organizations (NGOs): Most of these private homes and schools as well as NGOs found across the country often do not provide services specific to ASD. Most house orphaned and vulnerable children with ASD and intellectual disability. Many provide stimulating play

and vulnerable children with ASD and intellectual disability. Many provide stimulating play environments and some form of remedial education for the children. The practice of these private homes and schools and the NGOs are not properly regulated, and the local standard of care or interventions they offer may not meet ethical and scientific standards to be considered evidence-base. However, they provide a ray of hope in an environment where there is little or no hope. The services are often

provide a ray of hope in an environment where there is little or no hope. The services are often expensive and mostly unaffordable for average parents. Orthodox (Traditional) Medical Practices: These consist of settings like teaching hospitals, specialized psychiatric hospitals, general hospitals, and private hospitals that offer services to children with neurodevelopmental disorders. These practices also provide limited psychological support and address associated problem behaviors and medical

also provide limited psychological support and address associated problem behaviors and medical co-morbidities. The core of treatment which is special education that focuses on social stimulation, language development (speech therapy), occupa-tional and physical therapies, and community social inclusion programs are largely lacking in most of these centers. This is an area where future social policies and legislations need to be targeted in the future. Most educational settings in Nigeria are

and legislations need to be targeted in the future. Most educational settings in Nigeria are normal main-stream schools designed for normally developing children. Most special schools available, which are quite few and exorbitant in costs, are privately owned. Future direction need to enact a legislation to incorporate special education facilities into normal main-stream schools. This would promote social stimulation for Nigerian children with ASD and promote community inclusion and therefore

social stimulation for Nigerian children with ASD and promote community inclusion and therefore reduce stigma.

### Overview of Research Directions  There is no established or nationally adopted research direction on ASD in Nigeria. However, suggested research direction based on the present state of ASD in Nigeria should include:
1.  Defining the magnitude of the problem of ASD, and needs assessment of affected individuals through a well-implemented nationwide epidemiological study, augmented with genetic and environmental studies.

2.  Administrative and research capacity develop-ment effort in terms of training for healthcare personnel, promoting human resource devel-opment in the area of interventions for ASD and other developmental disability.
3.  Establishment of Special Education Departments that should be incorporated into normal mainstream schools to promote social stimulation and community inclusion to reduce stigma. This process would be better enhanced by legislation and policy formulation.

4.  Full implementation of existing legislations like Child Rights Act and Nigeria Disability Law. These would promote educational and employment opportunities for people with various disabilities, including ASD. Social policy formulation should also address financial aspect of healthcare and special education provision for individuals with developmental disability since this is not presently covered under the Nigeria National Health Insurance Scheme (NHIS) or any existing social policies.

5.  Lastly, research direction should focus on massive public health education to positively influence help seeking behavior for children with ASD and other neurodevelopmental delay, which often leads to late diagnosis and interventions (Bakare et al. 2016).

### Social Policies and Current Controversies  Despite the adoption of Child rights Acts in year 2003 that promised equal opportunities to every Nigerian child, the full implementation has expe-rienced clog wheel because not all the Nigerian States, in particular Northern and Southern, have adopted it and those States that have adopted it has had its implementation hindered by a number of political, cultural, and social factors. Many children with ASD and other neurodevelopmental disabilities

cultural, and social factors. Many children with ASD and other neurodevelopmental disabilities are therefore still being locked up in the house and have been prevented by the parents and their relatives from accessing any form of intervention. This is largely because of common derogatory comments and associated stigma of having those children that parents experienced. In addition, health insurance is not available for most parents and where available it does not cover cases like ASD and other

is not available for most parents and where available it does not cover cases like ASD and other developmental disabilities. This exposed parents to out-of-pocket huge cost of care for their children with ASD and other developmental disabilities. So in the cases of ASD in Nigeria, a mixture of stigma and financial burden of care have denied many individuals with ASD the opportunity of any form of intervention, either medical or special education services despite the availability of law that

of intervention, either medical or special education services despite the availability of law that promised equal opportunities for every Nigerian child. Adults with ASD and intellectual disability are also denied access to their rights. Many lack employment opportunities despite being qualified to take available job spaces due to stigma and discrimination. Unlike the children that have the advantage of Child Rights Act, the Nigeria Disability Law is just freshly enacted and has not gone through

of Child Rights Act, the Nigeria Disability Law is just freshly enacted and has not gone through the rigor of judicial tests to assess its acceptance by the Nigerian public population. The factors of poverty and ignorance that promote the culture of wandering and begging children in form of Almajiri system of Islamic education mainly in the Northern Nigeria also promote the culture of labeling children with any form of mental illness or intellectual disability in the southern Nigeria witches,

with any form of mental illness or intellectual disability in the southern Nigeria witches, leading to further violation of their rights and other privileges that the Child Rights Act promised every Nigerian Child (Stepping Stones Nigeria 2010; AbdulQadir and Chiranchi 2017).

### Training  Universities in NZ offer degree programs and coursework that contribute to professional train-ing. The University of Auckland has an accredited Postgraduate Diploma in Applied Psychology that includes approaches to autism, emphasizing oper-ant methods and some modeling/self-modeling. Canterbury and Victoria Universities are strong through Psychology or Education. To become a special educator or resource teacher requires an initial teaching qualification followed by a post-graduate

educator or resource teacher requires an initial teaching qualification followed by a post-graduate diploma, available from Massey Univer-sity campuses or distance education. The Ministries of Health and Education offer printed guidelines and substantial workshops for educa-tors, therapists, and family members. Other training programs specific to children with autism are mainly provided by various NGOs. For example, Altogether Autism provides a Professional Development Series as in-service

NGOs. For example, Altogether Autism provides a Professional Development Series as in-service training related to the autism spectrum. Autism NZ provides several substantial programs aimed at individuals with autism, educators, profes-sionals, and parents, focused on understanding and practical strategies for quality of life and learning for those with autism. The programs edu-cate on how to build independence, manage inap-propriate behavior, and facilitate inclusion. Explore, the new

to build independence, manage inap-propriate behavior, and facilitate inclusion. Explore, the new government provider of autism services, is developing an array of training pro-grams for families and professionals.

### See Also  *   Autism and the Caribbean *   Brazil and Autism *   China and Autism *   Developing Countries and Autism *   Egypt and Autism *   Ethiopia and Autism *   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  Niravam *   Alprazolam  NLGN1 *

Education and Autism Spectrum Disorder *   Turkey and Autism  Niravam *   Alprazolam  NLGN1 *   Neuroligins  NLGN2 *   Neuroligins  NLGN3 *   Neuroligins  NLGN4X *   Neuroligins  NLGN4Y *   Neuroligins  Noncontingent Reinforcement (NCI) Anna M. Krasno The Gevirtz School, UC Santa Barbara Koegel Autism Center, Santa Barbara, CA, USA

### Definition  Noncontingent reinforcement is the use of posi-tive reinforcement that is not related to the occur-rence of a target behavior. It involves delivering reinforcement on a fixed-time schedule indepen-dent of whether the individual exhibits the target behavior during the interval. In other words, the individual’s behavior does not influence whether or not reinforcement is provided. For example, noncontingent reinforcement can be used with a child with autism who exhibits disruptive

example, noncontingent reinforcement can be used with a child with autism who exhibits disruptive behav-ior in the classroom for the function of gaining attention from the teacher. The teacher could implement a noncontingent fixed-time schedule of reinforcement where she gives the student attention at fixed times throughout the day. Since he is receiving the attention throughout the day, this results in a decrease of disruptive behavior. Noncontingent reinforcement weakens the contin-gency

results in a decrease of disruptive behavior. Noncontingent reinforcement weakens the contin-gency between the target response (disruptive behavior) and the reinforcement delivery. If extinction is used at the same time, this means that no connection is made between the target response and the reinforcement and the behavior decreases.

### See Also  *   Contingencies of Reinforcement *   Negative Reinforcement *   Operant Conditioning *   Positive Reinforcement  Nondirective Play Therapy *   Play Therapy  Nonfluency *   Fluency and Fluency Disorders  Nonfluent Aphasia *   Broca’s Aphasia  Nonliteral Language *   Figurative Language  Nonparametric Statistics Daniel Campbell Yale Child Study Center, Yale University, New Haven, CT, USA  ### Synonyms  Distribution-free statistics  ### Definition  Nonparametric statistics

CT, USA  ### Synonyms  Distribution-free statistics  ### Definition  Nonparametric statistics encompasses the statistical methods that do not make any assumptions about the underlying distribution of data. It can be contrasted with parametric statistics, which makes explicit assumptions about the distribution of observed data and which uses the data to estimate parameters of that distribution. For example, it is common to assume that data is drawn from a normal distribution with unknown

For example, it is common to assume that data is drawn from a normal distribution with unknown parameters m (mean) and s2 (variance); a parametric approach would esti-mate m and s by the sample mean and the sample standard deviation, respectively. Nonparametric sta-tistics, on the other hand, would not assume the data is normally distributed a priori, and instead would estimate the shape of the distribution itself. There are two main types of nonparametric methods in statistics: methods that

distribution itself. There are two main types of nonparametric methods in statistics: methods that attempt to dis-cover the unknown underlying distribution of the data, and methods that make statistical inferences without regard to any underlying distribution. Methods of the first type include the histogram, and kernel methods such as kernel density estima-tion. Methods of the second type include hypoth-esis tests based on the rank ordering of the data rather than the actual data values.

hypoth-esis tests based on the rank ordering of the data rather than the actual data values. Frequently used nonparametric tests include the Wilcoxon signed rank test, the Kruskal-Wallis test, and Spearman’s and Kendall’s rank-correlation coefficients.

Nonstandard Assessment Louise Spear-Swerling Southern Connecticut State University, New Haven, CT, USA  ### Definition  A nonstandard assessment is one that does not rely on a standardized test, often because the student being evaluated does not fit the nor-mative sample for the test. For example, if a student is an English language learner, ideally he or she should be assessed using a standardized test developed and normed on a population speaking the same native language as the student.

test developed and normed on a population speaking the same native language as the student. However, for some languages, such tests may simply not be available. In this situation, an examiner might need to rely primarily on non-standard assessment procedures such as observa-tions of the student’s language use in multiple settings and information from the family about the student’s past language development and current language functioning. The term nonstandard assessment also is sometimes used

and current language functioning. The term nonstandard assessment also is sometimes used to describe accommodations of standard testing conditions for students with dis-abilities; these nonstandard assessment accom-modations are intended to “level the playing field” for the student without altering the basic nature, reliability, or validity of the test. For instance, if an examiner wanted to administer a written test of science content knowledge to a student with very limited reading skills,

a written test of science content knowledge to a student with very limited reading skills, then a nonstandard assessment involving reading the test items aloud and having the student give a verbal response would usually be acceptable; however, if the standardized test was intended to measure reading fluency, then the same nonstan-dard assessment would be inappropriate because the nonstandard assessment would not measure the student’s reading fluency. As another exam-ple, a relatively lengthy test

would not measure the student’s reading fluency. As another exam-ple, a relatively lengthy test administration might be broken into several shorter testing segments for a student with an autism spectrum disorder in order to help maintain the student’s consistent attention during testing. Although nonstandard assessments can provide useful information, they should be implemented and interpreted with caution.

### See Also  *   Norm-Referenced Testing *   Standardized Tests *   Validity  Nonverbal Communication Andrea McDuffie MIND Institute University of California-Davis, Sacramento, CA, USA  ### Definition  There are children with autism who may be con-sidered nonverbal, that is, children who use very few spoken words on a daily basis or for whom spoken language is not their primary means of communication. Some children are young and have not yet developed spoken language skills. These young

Some children are young and have not yet developed spoken language skills. These young children would be considered pre-verbal. Other children or older individuals, who are above the age of 5 years, who have not devel-oped functional spoken language skills can be considered nonverbal. Development of the ability to use nonprompted (i.e., spontaneous) spoken language in a flexible manner (i.e., across many contexts) prior to age 6 is known to predict posi-tive long-term outcomes for individuals

many contexts) prior to age 6 is known to predict posi-tive long-term outcomes for individuals with autism; this ability is sometimes termed “useful speech.” Thus, individuals with autism who fail to develop useful speech during the preschool years may require other approaches to allow them to achieve the ability to communicate func-tionally by other means. Communication systems designed to be used by individuals without functional spoken language skills are termed “augmentative and alternative

by individuals without functional spoken language skills are termed “augmentative and alternative communication” (AAC) systems; these systems include the use of gestures, eye gaze, body postures, sign language, photographs, printed words, objects, and symbols as the means of conveying meaning. In fact, research has shown that the use of an AAC system can support the development of spoken language in individuals who are considered nonverbal. Research is now underway to identify those chil-dren

in individuals who are considered nonverbal. Research is now underway to identify those chil-dren who may not respond well to behavioral interventions focusing on the development of spo-ken language and who may need earlier access to AAC systems. The picture exchange communication system (PECS) is an example of an AAC system that can be used with children with autism who are non-verbal or minimally verbal. In the PECS approach, children use a picture exchange with a communicative partner to

verbal. In the PECS approach, children use a picture exchange with a communicative partner to access desired mate-rials. The partner responds to the child’s commu-nication act (i.e., giving the picture) by putting the child’s communicative message into words. The use of PECS can be incorporated into a variety of intervention approaches (e.g., prelinguistic milieu teaching) to provide the means by which a child can produce a communication act.

### See Also  *   Communication Interventions *   Communicative Acquisition in ASD  Nonverbal Intelligence Emily S. Kuschner Center for Autism Spectrum Disorders, Division of Neuropsychology, Children’s National Medical Center, Washington, DC, USA

### Definition  Nonverbal intelligence describes thinking skills and problem-solving abilities that do not funda-mentally require verbal language production and comprehension. This type of intelligence involves manipulating or problem solving about visual information and may vary in the amount of inter-nalized, abstract, or conceptual reasoning and motor skills that are required to complete a task. Nonverbal intelligence is often closely linked with the Performance IQ domain of intellectual

task. Nonverbal intelligence is often closely linked with the Performance IQ domain of intellectual ability tests that evaluates nonverbal abilities, a domain which is often viewed in comparison to the Verbal IQ domain.

### Historical Background  The earliest intelligence tests developed in the mid- to late-1800s primarily measured sensory and motor abilities rather than conceptual or lan-guage abilities. However, the introduction of the 1905 Binet-Simon Scale and factor analytic theo-ries of intelligence brought a wave of new per-spectives on intelligence testing, separating out visual processing/reasoning/perception as unique components of intelligence. Historically, nonver-bal IQ assessments were developed

as unique components of intelligence. Historically, nonver-bal IQ assessments were developed by the US military in World War I with the goal of assessing recruits who had impaired verbal/language abili-ties (e.g., illiterate, less proficient with English). Nonverbal intelligence often plays a key role in understanding cognition and intellectual abilities for individuals with autism spectrum disorder (ASD). An uneven pattern of cognitive strengths and weaknesses in individuals with ASD has been

(ASD). An uneven pattern of cognitive strengths and weaknesses in individuals with ASD has been documented as far back as Kanner’s early descrip-tions of the disorder. His observations of attention to detail at the expense of global meaning, and a wealth of subsequent research findings in the field, led to the belief that enhanced nonverbal abilities may be a core feature for all individuals with ASD. It is now understood that these non-verbal abilities vary based on age, language level, overall

It is now understood that these non-verbal abilities vary based on age, language level, overall level of functioning, and diagnosis, but are still crucial to the understanding of cognitive pro-files in many individuals with ASD.

### Current Knowledge  Measurement of nonverbal intelligence serves two key functions: First, tests of nonverbal intel-ligence offer an assessment of nonverbal abilities, such as disembedding, visual sequencing, and pattern recognition skills. Some tests are designed to solely assess nonverbal abilities (e.g., Leiter International Performance Scale-Revised, Univer-sal Nonverbal Intelligence Test), while others offer index or composite scores for nonverbal skills alongside global scores for

while others offer index or composite scores for nonverbal skills alongside global scores for verbal skills (e.g., Perceptual Reasoning Index on the Wechsler Scale for Children, fourth edition; Nonverbal Cluster on the Differential Ability Scales). In addition to assessing nonverbal abilities, nonver-bal tests of intelligence can provide a mechanism for quantifying intellectual ability in individuals without spoken language or who have very impaired expressive and receptive language skills.

without spoken language or who have very impaired expressive and receptive language skills. Intelligence tests vary in the extent to which they meet each of these purposes. For example, the Performance IQ (PIQ) subtests on the Wechsler scales measure non-language visual rea-soning skills but provide instructions verbally. In contrast, on the Leiter International Performance Scale-Revised (Leiter-R) and the Test of Nonver-bal Intelligence, Fourth Edition (TONI-4), all item prompts are

(Leiter-R) and the Test of Nonver-bal Intelligence, Fourth Edition (TONI-4), all item prompts are administered with gestures and facial expressions, and individuals respond by pointing to pictures or by moving cards/shapes. These tests of intelligence that are nonverbal offer the advan-tage of removing verbal language demands from both administration and response. However, it should be noted that internalized language often still assists performance on nonverbal intelligence tests. For

that internalized language often still assists performance on nonverbal intelligence tests. For instance, when completing a sequencing or pattern recognition task, performance is often improved by orally or internally labeling the com-ponents of the sequence/pattern (e.g., car, plane, car, plane). In other words, nonverbal tests may still be measuring aspects of verbal abilities.

Assessment of intellectual functioning, and consideration of nonverbal intelligence, also plays an important role in ASD research. A measure of intellectual functioning is often needed to characterize the group of individuals with ASD who are participating in the study (e.g., Are the individuals with ASD of average, high, or low functioning abilities?). In addition, a group of individuals with ASD is often matched to another group of individuals (e.g., typically developing controls,

with ASD is often matched to another group of individuals (e.g., typically developing controls, individuals with another non-ASD developmental disorder) on a global measure of intellectual ability so that the two groups can be compared on a more specific cognitive ability or construct. The unevenness among cognitive abilities leads to the dilemma of what is “true” intelligence for individuals with ASD, and whether this is even possible to identify given wide variability within the population.

It has been consistently documented that indi-viduals with ASD have an uneven or spiky profile of intellectual and cognitive abilities, with non-verbal abilities often shown to be stronger than verbal abilities. This pattern has most frequently been discussed as a characteristic profile of scores across domains on the Wechsler intelligence tests, with PIQ exceeding Verbal IQ (VIQ). Peaks in PIQ performance are evident on the Block Design and Matrix Reasoning subtests that tap into

in PIQ performance are evident on the Block Design and Matrix Reasoning subtests that tap into visuoperceptual processing. In Block Design, a set of colored blocks is used to create a design presented in a picture (i.e., form a “whole” from its “parts”), and Matrix Reasoning requires the identification of missing parts of pictures. In con-trast, a relative weakness on the Wechsler scales is consistently demonstrated on the Comprehension subtest of the VIQ index, a task requiring the integration

demonstrated on the Comprehension subtest of the VIQ index, a task requiring the integration of social knowledge and conventions (e.g., “What is the thing to do if you find an envelope in the street that is sealed, addressed, and has a new stamp on it?”). It should be noted that this is not the typical profile of individuals who meet the diagnostic criteria for Asperger’s disorder. This group has more frequently demon-strated high verbal IQ compared to lower performance IQ.

Although nonverbal intelligence is often globally higher than verbal intelligence for individuals with ASD on molar tests, such as PIQ, there is variability among nonverbal abilities. Relative weaknesses are evident in nonverbal conceptual tasks that require some abstraction of ideas (e.g., recognizing the sequence or pattern of a set of items, identifying the semantic relationship among the items). In contrast, and as described above, strengths in nonverbal intelligence are gen-erally seen in

In contrast, and as described above, strengths in nonverbal intelligence are gen-erally seen in nonverbal tasks that are perceptually demanding (e.g., the Block Design subtest, puz-zles). More specifically, individuals with ASD are particularly good at disembedding details from the global elements or gestalt of stimuli and the world around them. This detail-focused pro-cessing style has been observed anecdotally by families and clinicians, and has been extensively explored in research studies.

anecdotally by families and clinicians, and has been extensively explored in research studies. In addition to Kanner’s early descriptions, parents of individuals with ASD have often described their children’s uncanny ability to notice single books out of place on bookshelves, or complete puzzles with the pieces turned over. In empirical research, this processing style has been examined with a wide variety of tasks, including the Embedded Figures Test and hierarchical letter tasks. The Embedded

variety of tasks, including the Embedded Figures Test and hierarchical letter tasks. The Embedded Figures Test involves identifying a simple shape (e.g., a triangle) embedded in a complex picture (e.g., a baby carriage), while the hierarchical letter test requires attending to the detailed “local” aspects of a stimulus versus the gestalt or “global” aspects (e.g., a large A letter made up of little S letters). The general theme across these tasks is that individuals with ASD are able to process

S letters). The general theme across these tasks is that individuals with ASD are able to process the detailed or local level of stimuli more accurately and/or efficiently than the global level. Researchers have theorized that these abilities may be a result of an enhanced ability to perceive details and ignore the global gestalt. Alternatively, these strengths may result from the inability (or reduced ability) to integrate whole and maintain the precedence of global features. Regardless of the

ability) to integrate whole and maintain the precedence of global features. Regardless of the mechanism, this area of research has consistently highlighted an area of strength for individuals with ASD, and has been conceptual-ized as a cognitive style rather than a cognitive deficit. Although there is some disagreement regarding how pervasive this detail-focused pro-cessing style is across individuals with ASD of different levels of functioning and subtypes, weak central coherence theory has

with ASD of different levels of functioning and subtypes, weak central coherence theory has sought to employ this perceptual bias in explaining other core fea-tures of ASD.

### Future Directions  A clear understanding of nonverbal intelligence has allowed clinicians and researchers to capture areas of strength for individuals with ASD that might not otherwise be evident in verbally based measures of intellectual ability. However, the dis-crepancy between nonverbal and verbal abilities leads to the dilemma of what is “true” intelligence for individuals with ASD, and whether this is even possible to identify given wide variability within the population. For

and whether this is even possible to identify given wide variability within the population. For example, individuals with an Asperger syndrome diagnosis often contrast other individuals on the spectrum and demonstrate bet-ter verbal abilities and relatively lower nonverbal intelligence. With the anticipated change in DSM-V diagnostic criteria for ASD and the merg-ing of all diagnoses into one ASD spectrum cate-gory, there will be added heterogeneity in cognitive profiles and further difficulty

spectrum cate-gory, there will be added heterogeneity in cognitive profiles and further difficulty with cap-turing “true” intelligence for individuals with ASD. Finally, intelligence is used as a predictor of outcome, and for some individuals with ASD, nonverbal and verbal intelligence scores would predict two very different trajectories for the same individual: (1) Do higher nonverbal IQ scores represent true potential when unburdened of verbal language? (2) Do these higher scores represent

represent true potential when unburdened of verbal language? (2) Do these higher scores represent splinter skills that do not efficiently or effectively translate to other areas of functioning? Future research on the predictive abilities of non-verbal intelligence will be needed to provide clear answers to these questions.

### See Also  *   Block Design Subtest *   Clinical Assessment *   Cognitive Skills *   Crystallized Intelligence *   Figure-Ground Discrimination *   Fluid Intelligence *   Intelligence Quotient *   Psychological Assessment *   Savant Skills (in Autism) *   Subtest Scatter *   Verbal Intelligence *   Weak Central Coherence *   Wechsler Preschool and Primary Scale of Intelligence  Nonverbal Learning Disabilities (NLD) *   Right-Hemisphere Syndrome  Nonverbal Learning Disabilities (NLD), Second

Disabilities (NLD) *   Right-Hemisphere Syndrome  Nonverbal Learning Disabilities (NLD), Second Edition Yu Han Neuroscience, University of Vermont, Burlington, VT, USA  ### Synonyms  Developmental right-hemisphere syndrome; Non-verbal learning disorder; Social-emotional learn-ing disability

### Short Description of Definition  Nonverbal learning disability (NLD) is a neurobehavioral disorder that impacts a person’s intelligence due to dysfunctions of the brain. NLD is a developmental disorder which constrains a child’s linguistic performance in the nonverbal domain. While an individual with NLD shows deficits in understanding nonlinguistic signs, he/she can be highly functional in verbal commu-nications. Other neuropsychological disorders related to NLD can impact a child’s

in verbal commu-nications. Other neuropsychological disorders related to NLD can impact a child’s abilities to perform in academic, social/emotional, and voca-tional areas (Palombo 2006). A critical challenge for an individual with NLD is social interaction due to the lack of visual processing abilities such as recognizing facial expressions and lack of spa-tial perception. NLD is not apparent at a very young age, such as preschool age, although the inability to understand nonverbal signs

at a very young age, such as preschool age, although the inability to understand nonverbal signs signifi-cantly manifests at the age when children begin to understand social interaction through engage-ment in verbal conversation (Thompson 1996). NLD does not necessarily constrain academic skills, but impairs mainly social interactions with characteristics similar to what was previously identified as Asperger’s syndrome, now part of Autism Spectrum Disorder (ASD), and pragmatic language impairment

Asperger’s syndrome, now part of Autism Spectrum Disorder (ASD), and pragmatic language impairment (PLI).

### Categorization  Nonverbal learning disorder was first identified by Doris Johnson and Helmer Myklebust in 1967 as a subtype of learning disability. Based on research by Rourke et al. (1989), this class of learning disability is organized into two categories: phono-logical processing disorder and nonverbal learn-ing disorder (p. 169). Typically, people with learning disabilities fail to perform at age level and exhibit difficulty in rote-verbal learning and in phonological processing. Unlike

at age level and exhibit difficulty in rote-verbal learning and in phonological processing. Unlike children with general learning disabilities, children with NLD demonstrate significantly higher verbal IQ than performance IQ.

skills, fine motor skills, and manipulation of materials (Rourke 1989). Accordingly, they need significant support in adapting to changes, in generalizing what they have learned, and in following instructions with multiple steps. There is no consensus on the cluster of learning disabilities that comprises NLD. Accurate procedures to diagnose children with NLD are not yet available as there have been multiple changes in classification. The American psychiatric association (APA) uses the diagnostic

multiple changes in classification. The American psychiatric association (APA) uses the diagnostic and statistical manual of mental disorder (DSM) to produce an accurate diagnosis within various mental disability categories (APA 2000). NLD was not included in the DSM-IV or in the current revision of the DSM-5 (APA 2013). Moreover, many symptoms of NLD are similar to those of ASD and PLI. The differences among these three disorders have not been clearly defined. It has been proposed that NLD may

among these three disorders have not been clearly defined. It has been proposed that NLD may be a disorder on the “borderlands of autism” (Bishop 1989, p. 107). Children with ASD, who perform well in cognitive and linguistic areas, have features in common with both NLD and PLI. PLI is also considered to be a social communication disorder, meaning that children with PLI have difficulty using language appropriately in social situations. Overall, NLD, ASD, and PLI have overlapping, but not

language appropriately in social situations. Overall, NLD, ASD, and PLI have overlapping, but not identical, symptoms. For example, an individual diagnosed with NLD will show some of the features of PLI, but the reverse may not be true (Bishop and Norbury 2002). The overlap of symptoms among these three learning disorders involves patterns of behavior in a social context. There is yet no evidence of restricted or repetitive patterns of behavior that clearly distinguishes the disorders.

The following is a set of criteria used to identify NLD (Rourke et al. 2002): 1. Bilateral deficits in tactile perception, usually more marked on left side of the body. Simple tactile perception may reach normal levels as the child ages, but interpreting complex tactile stimulation remains impaired.

2. Bilateral deficits in psychomotor coordination, usually more marked on the left side of the body. Simple, repetitive motor skills may reach normal levels with age, but complex motor skills remain impaired or worsen relative to age norms.

3. Extremely impaired visual-spatial-organizational abilities. Simple visual discrimination can reach normal levels with age, particularly when stimuli are simple. Compared to age norms, complex visual-spatial-organizational abilities worsen with advancing years.

4. Substantial difficulty in dealing with novel or complex information or situations. A strong tendency to rely on rote, memorized reactions, approaches, and responses (often inappropriate for the situation), and failure to learn or adjust responses according to informational feedback. Also, frequent use of verbal responses in spite of the requirements of the novel situation. These tendencies remain or worsen with age.

5. Notable impairments in nonverbal problem solving, concept formation, and hypothesis testing.
6. Distorted sense of time. Estimating elapsed time over an interval and estimating time of day are both notable impairments.
7. Well-developed rote verbal abilities (e.g., single-word reading and spelling), frequently superior to age norms, in the context of notable poor reading comprehension abilities (particularly so in older children).

8. High verbosity that is rote and repetitive, with content disorders of language and deficits in functional/pragmatic aspects of language.
9. Substantial deficits in mechanical arithmetic and reading comprehension relative to strengths in single-word reading and spelling.

10. Extreme deficits in social perception, judgment, and interaction, often leading to eventual social isolation/withdrawal. Easily overwhelmed in novel situations, with a marked tendency toward extreme anxiety, even panic in such situations. High likelihood of developing internalized forms of psychopathology (e.g., depression) in later childhood and adolescence.

### Epidemiology  Nonverbal learning disorder (NLD) is diagnosed less frequently than other language-based learning disorders (e.g., reading and written expression disorder). While approximately 10% of the population has been diagnosed with having a learning disability, only 0.1– 1.0% of the population has been found to have NLD. NLD has been diagnosed equally in female and male populations (Thompson 1996). Moreover, based on social behavioral problems, children with NLD also show some

(Thompson 1996). Moreover, based on social behavioral problems, children with NLD also show some features of attention deficit hyperactivity disorder (ADHD) and are easily misdiagnosed as having ADHD (Antshel and Khan 2008). Educators often define NLD as a language-based learning disability based on academic and cognitive assessments. Thus, the data regarding NLD are unclear and, as a result, NLD is often misdiagnosed as other types of learning disorder.

### Analysis from Case Study  Chris, a child diagnosed with NLD, was able to read before she started school. On a widely used intelligence test, she achieved a verbal IQ score of 120 and a performance IQ score of 102 indicating that she has high functioning verbal ability that is not matched by her nonverbal ability. When she was in preschool she had difficulties in comprehending, transitioning, socializing with other peers, and making self-decisions. She was unable to choose how she wanted to

socializing with other peers, and making self-decisions. She was unable to choose how she wanted to play during free-choice time because reading was the only activity Chris enjoyed in school. When someone stopped her from reading, she became belligerent and refused to comply. This behavior caused the other students to become wary of being close to Chris during free-choice time. When Chris became a 1st grader, she was exceptional in reading and spelling. She was a fast learner with high auditory

1st grader, she was exceptional in reading and spelling. She was a fast learner with high auditory attention ability. She also liked to create imaginative stories. However, she was not interested in writing down her stories because handwriting was a challenge. Moreover, Chris struggled with math and tended to avoid the teacher’s attention during math class. Aside from math, her scores on other achievement tests were higher than average.

Chris also showed some difficulties in music and art classes. The music class included lots of rhythmical activities. Chris mostly excused herself from those activities to use the bathroom or read books. Drawing, coloring, and creating were the main activities in the art classes. Chris rushed to finish these activities in order to read books. When her art creation was returned to her with feedback to revise, she got angry and threw away her art. Due to her lack of physical coordination and

to revise, she got angry and threw away her art. Due to her lack of physical coordination and endurance, gym classes were also not enjoyable for Chris. She refused to go to the playground for activities.

This case study contains multiple prognostic factors for NLD. NLD impacted the child’s academic and social activities. Chris had difficulties with handwriting, math reasoning, and fine motor skills. These difficulties are related through deficits in visual processing, motor function, and the child’s social/emotional profile. Children with NLD generally show lack of both gross and fine motor skills. In this case study, the gym classes preponderantly required gross motor skills (e.g., big movements)

this case study, the gym classes preponderantly required gross motor skills (e.g., big movements) and involvement of larger muscles. The handwriting and art projects required mostly fine motor skills (e.g., dexterity) and use of small muscles. Regardless of size of movements, children with NLD demonstrate inadequate kinesthetic processing due to weakness of spatial perception. Moreover, non-reaction towards non-verbal signs is significant evidence of NLD. The case study also contains a significant

towards non-verbal signs is significant evidence of NLD. The case study also contains a significant cue to Chris’s diagnosis with NLD by emphasizing how well she responded to auditory directions. The natural history of NLD shows that symptoms of NLD may be confused with those of ADHD and what used to be termed Asperger’s syndrome (a part of ASD). However, main indicators of NLD include critical deficits in visual-spatial processing, nonverbal recognition, and kinesthetic discrepancy. Challenges in

in visual-spatial processing, nonverbal recognition, and kinesthetic discrepancy. Challenges in these areas greatly impact how children with NLD improve in academic and social/behavioral performances (Palombo 2006).

### Clinical Expression and Pathophysiology  Nonverbal learning disorder is a disability characterized by accurate psycholinguistic skills and impoverished visual-spatial orientation, tactile-perceptual, psychomotor, and nonverbal problem-solving skills. These strengths and weaknesses are observed in the following ways:
 | Assets | Deficits | |---|---| | Intact repetitive motor skills | Bilateral tactile-perceptual and psychomotor deficits (primarily left side) |

| Responsive to learning through repetition and the auditory modality | Impaired visual discrimination |
| Well-developed auditory perceptual skills | Impaired visual-spatial organization (e.g., drawing patterns from memory) |
| Well-developed rote verbal and verbal memory skills | Difficulty with novel and complex situations |

| Ability to sustain attention to simple, repetitive verbal information | Deficits in nonverbal problem-solving concept formation, hypothesis testing, and use of feedback |
| Strong receptive language skills including rote verbal memory and verbal associations | Difficulty with cause-effect and recognizing incongruities |

| Advanced phonemic awareness, including blending and segmentation | Verbose with poor pragmatics (i.e., miss social cues), including inefficient prosody and over reliance on language for relating socially and decreasing anxiety |
| Average single-word reading and spelling skills | Deficits in math (i.e., functions, decimals, percents, ratios, estimation, geometry, and any visual-spatial math function) |

| | Impairments in social perception, judgment, and interaction skills, including tendency to withdraw |

| | Increased risk for suicide | Adapted from Hooper (2000), Rourke and Tsatsanis (1996), Rourke et al. (2002)  In addition to the challenges outlined in the chart above, deficits in higher-level reasoning and problem-solving skills impact on social-emotional learning of an individual with NLD (Rourke 1989). In other words, children with NLD often lack executive functions related to cognitive abilities. These functions engage with complex goal-directed behavior and adaptation in environmental

These functions engage with complex goal-directed behavior and adaptation in environmental changes. Because these executive functions require self-monitoring and self-awareness to produce appropriate behavior, children with NLD commonly show difficulties with cause-and-effect reasoning, problem solving in various social contexts, and time perception. These are the critical foundations and skills needed for social interactions (Palombo 2006). Issues related to executive function also impact

needed for social interactions (Palombo 2006). Issues related to executive function also impact breakdown in social interaction. Children with NLD are less motivated to be social with their peers because of difficulty processing new information and adapting to unfamiliar interpersonal interactions (Volden 2004). Psychopathologies are more evident in children with NLD more than neurotypical children. For example, there is greater risk for depression, withdrawal, and suicide in NLD (Fuerst and

For example, there is greater risk for depression, withdrawal, and suicide in NLD (Fuerst and Rourke 1995). Awkwardness with other social peers is a distinctive feature of NLD.

Mothers of children with NLD have high levels of maternal stress and high levels of dysfunctional interaction with their children. Indeed, the more severe the disability that children have, the greater the stress and emotional breakdown that the parents have (Antshel and Jospeh 2006). The lack of relationship between a mother and a young child with NLD will create a challenge to maintain the relationship in later years. Thompson (1997) described the developmental progression of Nonverbal

relationship in later years. Thompson (1997) described the developmental progression of Nonverbal learning disorder and included additional signs and symptoms presented in early preschool age (3–5 years old). These additional symptoms included strong ability in verbatim memory skills, extreme verbosity, development of early reading skills (e.g., strong letter/number recognitions, spelling skills), and use of literal translations. However, symptoms of impaired gross motor development remained,

and use of literal translations. However, symptoms of impaired gross motor development remained, including balance and body coordination (e.g., problems riding a bike and spatial confusion).

As they grow into elementary school age (ages 6–10), individuals with NLD will demonstrate deficits in copying text, continue to make literal translations, and continue misjudging and misinterpreting social information. At ages 11–14, individuals with NLD will continue having difficulties in understanding emotional expectations and this will lead to miscommunication with teachers and other social peers at school. Furthermore, difficulties with visual-spatial organizational skills become obstacles

at school. Furthermore, difficulties with visual-spatial organizational skills become obstacles to children with NDL and their productivity on tasks. The same behavior deficits involving literal translation, misinterpretation, and misunderstanding cause children with NLD to have difficulties understanding abstract concepts as well as communicating with other social peers. Because of these continued, under-appreciated behavior deficits, children with NLD start to experience some level of depression.

under-appreciated behavior deficits, children with NLD start to experience some level of depression. Although in high school years (ages 15–18) they appear, at best, to be immature in socializing, they will show improvements in some social domains. Peer tolerance tends to increase so that children with NLD may establish intimate friendships. Relationships between sexes will gradually develop. Eventually, their NLD symptoms will disrupt the ability to become independent adults. Their continuing

their NLD symptoms will disrupt the ability to become independent adults. Their continuing challenges with literal understanding, lack of ability to solve abstract concepts, and visual-spatial impairments will increase their low self-esteem, depression, withdrawal, and anxiety.

Neuroscience studies have shown that NLD involves abnormalities in the right cerebral hemisphere of the brain which is important for nonverbal processing skills. Rourke and colleagues have spent three decades designing a neuropsychological model to explain the strengths and challenges of individuals with NLD. Their work, White Matter Model, was published in 1987. White matter refers to long myelinated fibers in the brain. Their work shifted the focus on the origin of NLD from a primary

myelinated fibers in the brain. Their work shifted the focus on the origin of NLD from a primary dysfunction of the right cerebral hemisphere to consideration of an underdevelopment of white matter in the brain (Rourke 1987, 1989, 1995; Rourke et al. 2002). This novel idea stemmed from observations that cerebral white matter malfunctions in various conditions manifesting impairments in perceptual and cognitive functions similar to NLD, such as agenesis of the corpus callosum, in which the large

and cognitive functions similar to NLD, such as agenesis of the corpus callosum, in which the large bundle of white matter connecting two cerebral hemispheres has failed to develop. In addition, children who experienced severe head injuries or who have received repeated radiation treatment on their brains may have damage to white matter and, therefore, may have higher risk to develop the symptoms of NLD.

### Evaluation and Differential Diagnosis  The fact that NLD does not produce outstanding symptoms on its own, and has considerable similarities to other disorders, necessitates careful consideration of the evaluation and diagnostic procedures for NLD. The clinical diagnosis of NLD evaluates neuropsychological strength and weakness by implementing Rourke’s classification criteria and the preliminary communication profile (Rourke and Tsatsanis 1996). Differential diagnosis should involve a

communication profile (Rourke and Tsatsanis 1996). Differential diagnosis should involve a comprehensive neuropsychological evaluation incorporating examination of academic, social-emotional, and cognitive skills. An interdisciplinary team approach should be used to assess functional impairments and disabilities. These professional disciplines may include occupational therapy, speech-language pathology, medicine, psychology, and education. It is critical that various professionals and experts

medicine, psychology, and education. It is critical that various professionals and experts work together to establish concrete understanding of the individual’s challenges over time and across multiple developmental domains. From a history of the child, physicians can share profiles of the child’s impairments with other professionals to prevent missing possible red flags (e.g., poor psychomotor development, clumsiness, and challenges with early handwriting tasks). It is clearly important that the

clumsiness, and challenges with early handwriting tasks). It is clearly important that the child be evaluated later in their development such as in middle school or high school. A discrepancy in performance IQ and verbal IQ at any stage of development is a critical piece of evidence.

Based on evidence obtained by multiple professionals, schools can support individuals with NLD using relevant services (Thompson 1996). Assessment of communication skills must proceed along with examinations in semantic (meaning of words) and pragmatic (functional language use) skills, as these are the areas of common concern for children with NLD. Challenges in literacy or language are often observed in the relative strengths with phonological processing (speech sound processing) and syntax

in the relative strengths with phonological processing (speech sound processing) and syntax (grammar). Children with NLD may seem to have a rich vocabulary because of favorable scores on receptive/expressive language measures (e.g., Peabody Picture Vocabulary Test-4th edition (PPVT-4), Expressive One-Word Vocabulary Test-2nd edition (EVT-2)). However, these test measurements are limited by their examination of the use of socially accepted words, use of multiple words across various contexts, or

of the use of socially accepted words, use of multiple words across various contexts, or use of those words that occur with less frequency. The tests do not measure the extent to which individuals with NLD miss meaningful contents in their conversations because they do not fully understand the words they are using. Thus, it is essential to evaluate the higher-level semantic skills of children with NLD including understanding of multiple meanings and figurative language. Standardized measures

with NLD including understanding of multiple meanings and figurative language. Standardized measures available to administer tests of these linguistic skills include the Test of Problem Solving-3rd edition (TOPS-3), The Word Test-3, and the Test of Language Competence-2nd edition (TLC-2). Professionals should be encouraged to collect valuable information on the appropriate social use of language (e.g., conversational turn taking, maintaining and building on topics, and recognizing and repairing

conversational turn taking, maintaining and building on topics, and recognizing and repairing communication breakdowns). Assessments may also be implemented by using Children’s Communication Checklist-2 (CCC-2), Pragmatic Protocol, Assessment of Language Impaired Children’s Conversations, Topic Checklist, and Narrative Analysis (i.e., analyzing a child’s narrative for story grammar and other components).

### Treatment  Because the symptoms of NLD are varied, the most efficient treatment for children with NLD involves establishing individualized goals and specialized instruction. Educators can then coordinate the interventions to produce the best long-term outcomes. These interventions should include functional practices children with NDL can use on a daily basis. The ultimate goal of all interventions is to improve active processing of new information by helping individuals with NLD to explain

is to improve active processing of new information by helping individuals with NLD to explain concepts, instructions, and stories in their own words rather than relying on repeating known information verbatim from memory (Rourke 1995). Sets of compensations, accommodations, modifications, and individualized learning strategies (CAMs) should be implemented for the appropriate needs of the individuals with NLD (Thompson 1997). For example, a child with NLD may be provided with extra time to

with NLD (Thompson 1997). For example, a child with NLD may be provided with extra time to navigate himself to a place when given verbal cues. This intervention will require the child to practice utilizing his understanding of spatial and directional concepts. Task analysis is a procedure based on Applied Behavior Analysis (ABA) that is another intervention strategy for children with NLD. Task analysis is a strategy that divides a targeted behavior into a series of step-by-step instructions

analysis is a strategy that divides a targeted behavior into a series of step-by-step instructions (Smith 1999). Rather than teaching the multiple steps of the task all at once, an educator can introduce small sets of tasks so that children with NLD have ample time to adapt and process the new information. Depending on the types of tasks, an instructor starts the instruction sequence beginning with the first step (called Forward Chaining) or the children with NLD can start from the last step of

the first step (called Forward Chaining) or the children with NLD can start from the last step of the instruction sequence (called Backward Chaining).

Berg (2000) introduced the use of gestalt imagery as an intervention for children with NLD. Children with NLD often get frustrated when creating a gestalt to support their comprehension levels. Since individuals with NLD show deficits in abstract-concept processing, they are not able to organize the parts of a concept from the whole. Implementation of gestalt instruction will help children with NLD to connect incoming language (both oral and written) to prior knowledge. Therefore, these gestalt

to connect incoming language (both oral and written) to prior knowledge. Therefore, these gestalt interventions facilitate smooth socialization of children with NLD by helping them to interpret what they see, hear, and feel from the surrounding environments. To utilize the gestalt imagery, one needs to learn how to describe a picture, an image, a simple sentence, and then add interpretation and critical thinking to this imaging process (Bell 1986).

The following is a list of accommodations, modifications, and teaching strategies (CAMS) based on the work of Sue Thompson, M.A., C.E. (Thompson 1996):
1. Expectations for this child should always be applied with flexibility, taking into consideration the fact that she has different needs and abilities than her peer group.

2. Independence should be introduced gradually in controlled, nonthreatening situations. The more completely those around her understand this child and her particular strengths and weaknesses, the better prepared they will be to promote attitudes of personal independence. Never leave this child to her own devices in new activities or situations which lack sufficient structure.

3. School assignments which require merely copying text need to be modified or omitted, owing to the visual-spatial nature of such an exercise. Active verbalization and/or subvocalization are the best memory approaches for this child.

4. Adults need to check often for understanding and present information in plain and clear verbal terms (i.e., “spell out” everything). A “parts-to-whole” verbal teaching approach should be utilized. A child with NLD will need to ask a lot of questions, as this is her primary means of gathering information.

5. All expectations need to be direct and explicit. Do not require this child to “read between the lines” to glean your intentions. Avoid sarcasm, figurative speech, idioms, slang, etc., unless you plan to explain your usage.
6. This student’s schedule needs to be as predictable as possible. He should be prepared in advance for changes in routine, such as assemblies, field trips, vacation days, finals, etc.

7. Placement must be in an environment, which has a well-established routine because this child will not decipher nonverbal cues. She cannot adjust well to constant changes in routine (this child lacks the ability to “wing it” in times of doubt) and has learned to fear all new and/or unknown situations and experiences.
8. This child will benefit from cooperative learning situations (when grouped with “good role models”). Active verbalization is an important element in how this child learns.

9. Tell the child everything and encourage her to give you verbal feedback. The most effective instructional procedures are those that associate verbal labels with concrete situations and experiences.

10. Isolation, deprivation, and punishment are not effective methods to change the behavior of a child who is already trying his best to conform (but misinterpreting all kinds of non-verbal cues). If inappropriate behaviors are causing problems at school, a functional analysis and behavioral intervention plan detailing a course of action needs to be completed.

## Noonan and Ras/MAPK Pathway Syndromes  ### Synonyms  Male Turner; Ras/MAPK pathway syndromes  ### Short Description or Definition  Noonan syndrome (NS) is a multiple malformation genetic disorder characterized by dysmorphic facies including hypertelorism, ptosis, low-set posteriorly rotated ears, short neck, and relative macrocephaly. Associated features include short stature, chest deformity, undescended testes, muscle hypotonia, frequent learning difficulties, and congenital heart disease

undescended testes, muscle hypotonia, frequent learning difficulties, and congenital heart disease most commonly valvular pulmonary stenosis. In 2001 (Tartaglia et al. 2001), a germline mutation in the PTPN11 gene in the Ras/MAPK (mitogen-activated protein kinase) signal transduction pathway was found to be a cause of nearly 50% of the cases of NS. Since then, a number of other genes in the same pathway have been identified but in about 25% the causative gene for NS has yet to be identified.

Before NS was recognized as a distinct syn-drome, some females were misdiagnosed as having Turner syndrome, and many males, given the diagnosis of male Turner, are now recognized as having NS. The recognition of this entity as a distinct new syndrome was presented first in 1963 (Noonan and Ehmke 1963) and then published in 1968 (Noonan 1968). Dr. John Opitz (1985) proposed the eponym “Noonan syndrome” because Dr. Jacqueline Noonan was the first to recognize that the syndrome occurred in both

because Dr. Jacqueline Noonan was the first to recognize that the syndrome occurred in both males and females, had normal chromo-somes, could be inherited, and frequently had valvular pulmonary stenosis.

### Categorization  NS is the most common of a number of conditions that involve a gene mutation in the RAS/MAPK pathway. These include cardio-facial-cutaneous syndrome, Costello syndrome, Leopard syndrome, and neurofibromatosis1 (NF1).
 ### Epidemiology  The estimated incidence of NS is 1:1000–1:2500 births. It occurs worldwide with a slight predominance in males. It is transmitted as an autosomal dominant, but sporadic cases are frequent.

### Natural History, Prognostic Factors, and Outcomes  #### Infancy  NS may be suspected in fetal life because of the frequent finding of cystic hygroma identified on routine fetal ultrasound. This abnormality is not unique to NS and is not uniformly present. If either parent has NS, and the causative gene is known, prenatal testing of the fetus can be accomplished. There is an increased incidence in polyhydramnios but most newborns are within normal range for length and weight. In a minority of

in polyhydramnios but most newborns are within normal range for length and weight. In a minority of infants with NS, the newborn period may be complicated by significant distress due to pleural effusions with respiratory compromise. Dysmorphic facies may be subtle but the presence of pulmonary stenosis should suggest the possibility of NS. Most cases of NS are not diagnosed in the newborn.

Failure to thrive with poor feeding and vomiting is severe enough in about one quarter of infants to prompt hospitalization for evaluation, and many require treatment for reflux and undergo tube feedings. In the remainder, there may be slower than average motor development with both sitting up and walking somewhat delayed probably attributed to decrease in muscle tone. Speech is often delayed.

#### Childhood  Slow growth in early childhood is common with height falling off the growth curve so that by 4–5 years of age, short stature becomes a real concern prompting both a genetic and endocrine evaluation. The majority of children with NS are not recognized until 6–7 years of age. It is important to consider the diagnosis of NS as early as possible so that early intervention can be started. Learning difficulties in school require evaluation of vision and hearing. Both vision problems

Learning difficulties in school require evaluation of vision and hearing. Both vision problems and hearing loss are relatively common, and early intervention before starting school should be the goal.

#### Adolescence  The adolescent with NS often feels out of place with peers. Puberty is often delayed so the growth spurt occurring in peers is delayed in NS making the short stature more evident. Although growth hormone deficiency is uncommon in NS, it does occur and an endocrine evaluation is appropriate. Today, there is an increase in the use of growth hormone in NS even without growth hormone deficiency. There is no question that growth hormone treatment will significantly increase growth

deficiency. There is no question that growth hormone treatment will significantly increase growth velocity and also accelerate the usual delay toward puberty. Some feel that growth hormone treatment will increase the estimated adult height but no control study has been carried out to confirm this. For those with very short stature below the third percentile, the addition of 3–4 in. over expected adult height may make daily living activities easier similar to patients with Turner syndrome. The use

height may make daily living activities easier similar to patients with Turner syndrome. The use of growth hormone in all NS patients with more modest short stature is more controversial. Some concerns include the high cost of growth hormone treatment and the message sent that being short is a real handicap and needs treatment. More attention should be given to preparing the NS individual for adulthood. Most patients with NS graduate from high school and many attend college and go on to become

Most patients with NS graduate from high school and many attend college and go on to become teachers, social workers, nurses, and even physicians and lawyers.

#### Adulthood  The phenotype of NS changes over time (Allanson et al. 1985) and by adulthood many blend into the normal population. The adult with NS has sharper features with a narrow nasal root and a thin bridge. The neck is longer and webbing more prominent and the skin somewhat transparent. It is interesting that more and more adults are being recognized to have NS for the first time after giving birth to an affected child. This is not surprising since there is variation in the overall

giving birth to an affected child. This is not surprising since there is variation in the overall physical appearance of a NS patient even among affected family members. Both parents should be carefully evaluated when an infant or child is diagnosed with NS. If NS is suspected, this should be confirmed by genetic consultation so parents can be informed of the 50% risk for subsequent offspring.

#### Outcomes  There is surprising little information on the natural history of NS. Shaw (Shaw et al. 2007) reported a long-term study on 112 NS individuals (age 12–71 years). There were 57 males and 55 females. Mean years of follow-up were 12 years. This study confirmed the need for long-term follow-up of NS patients. The mean age in that study was only 25.3 years and the mean years of follow-up only 12 years. Most patients felt their quality of life was satisfactory or good. A lack of social

only 12 years. Most patients felt their quality of life was satisfactory or good. A lack of social life and inability to fit in was cited as a problem for some. The only other publication is a report (Noonan 2005a) of 56 patients diagnosed with NS with a range of age 21–59 years. In this report, 12 (23% of 51) reported a diagnosis of depression and were on antidepressant medication. One had a diagnosis of a bipolar disorder and another with oppositional behavior. Two were recovering alcoholics.

of a bipolar disorder and another with oppositional behavior. Two were recovering alcoholics. It was of interest that the majority of the 30 diagnosed in childhood were unmarried (75%), while the 15 diagnosed as adults (85%) were married, and all of those had one to three affected children which had prompted the diagnosis of NS.

### Clinical Expression and Pathophysiology  All patients with suspected NS should have a cardiology consultation including an electrocardiogram and echocardiogram. Over 80% of children with NS have some cardiac problem. Valvular pulmonary stenosis is the most common. Fortunately in many, the obstruction is mild and requires only periodic follow-up. Severe pulmonary stenosis may require surgery if the valve is very dysplastic making balloon valvuloplasty unsuccessful. Many with moderate

if the valve is very dysplastic making balloon valvuloplasty unsuccessful. Many with moderate pulmonary stenosis can be treated with cardiac cath. Atrial septal defects are also common and may be isolated or associated with pulmonary stenosis. Nearly every kind of congenital heart disease has been reported. Even with mild lesions, lifelong follow-up is important. Late developments of valvular and vascular disease have been reported. Although hypertrophic cardiomyopathy is present in only 20% of

vascular disease have been reported. Although hypertrophic cardiomyopathy is present in only 20% of NS patients, there are particular mutations, such as RAF1, with a very high incidence. For the uncommon infant with NS and symptomatic HCM, close follow-up is essential. The development of heart failure in such an infant should prompt early referral for heart transplant evaluation since the mortality is high. For the remainder, regular follow-up is needed, but in many the cardiac status remains

is high. For the remainder, regular follow-up is needed, but in many the cardiac status remains stable and asymptomatic for many years.

Many with NS experience easy bruising which may be attributed to a number of coagulation factor deficiencies such as factor XI, XII, and VIII and less commonly factor IX and II. Thrombocytopenia and platelet dysfunction are common. In most, the symptoms are mild but in cases of excessive bruising, epistaxis, menorrhagia, or an anticipated surgical procedure, a hematology consult should be obtained. Aspirin should be avoided. Some infants with NS have enlargement of the liver and spleen which

Aspirin should be avoided. Some infants with NS have enlargement of the liver and spleen which may be due to a myeloproliferative disorder which resembles the highly fatal juvenile myelomonocytic leukemia (e.g., Kratz et al. 2005). Fortunately in NS with a PTPNII mutation, this condition has a favorable prognosis with gradual improvement without specific therapy in the majority of such infants.

Lymphatic problems occur in about 20% and include an increased risk of chylous thorax following cardiac surgery but this condition may occur spontaneously and may be difficult to manage. Both pulmonary lymphangiectasia and intestinal lymphangiectasia are rare findings but peripheral edema often seen in infancy which resolves spontaneously may become a problem in adults. Orthopedic problems such as scoliosis and kyphosis require close follow-up and referral as needed.

Neurologic, cognitive, and behavioral aspects of NS are extremely variable and are still poorly understood. Seizures are not common but occur and are usually responsive to common drug therapy. Arnold-Chiari malformation is uncommon but is increasingly being recognized. Although most individuals with NS have normal intelligence as a group, IQ tends to be ten points lower than unaffected family member or that of the general population (Van der Burgt et al. 1999). There is a difference depending

or that of the general population (Van der Burgt et al. 1999). There is a difference depending on the gene mutation. SOS1 mutations as a group have normal intelligence and good school performance compared to PTPN11 (Tartaglia et al. 2007) mutations, although specific PTPN11 mutations have no cognitive delay (Cesarini et al. 2009). Muscle weakness results in some clumsiness, and vision may contribute to poor coordination. As a group, they are happy, animated, social, and active children.

Only recently have there been any cognitive, neuropsychological, and behavior studies of NS related to genotype. Pierpont in 2009 (Pierpont et al. 2009) demonstrated that cognitive impair-ments were common among individuals with a PTPN11 mutation, while all SOS1 individuals had verbal and nonverbal cognitive skills in the normal range. As expected hearing loss, motor dexterity, and parental education levels accounted for significant variability in cognitive outcome. In a more recent paper,

education levels accounted for significant variability in cognitive outcome. In a more recent paper, Pierpont (Pierpont et al. 2010) studied the language phenotype of children and adolescents with NS. She studied 66 NS patients and found that variation in language skill is closely related to cognitive, perceptual, and motor factors. There was no evidence that specific aspects of language are selectively affected by NS. Venhaeven et al. (2007) reported in 2008 a study of ten NS patients ranging in

affected by NS. Venhaeven et al. (2007) reported in 2008 a study of ten NS patients ranging in age from 16 to 59 years. This study confirmed previous studies showing variability in IQ scores but as a whole in the low-average range. In regard to psychoneuroticism, anxiety, and depression, using a study on a self-report instrument (SCL-9o-R) showed higher-than-average results of comorbidity in this population. Conversely, testing on quality of life and satisfaction showed average-to-high

in this population. Conversely, testing on quality of life and satisfaction showed average-to-high satisfaction with different aspects of life. Investigators found the participants as “remarkably friendly, cooperative, and very willing to please.” They found no behavioral phenotype associated with NS but measurements of social cognition and adaptation appeared to be somewhat impaired suggesting some degree of alexithymia is present. This term refers to impaired ability to identify and

some degree of alexithymia is present. This term refers to impaired ability to identify and communicate one’s emotional state. This finding may help explain the report of depression in adult NS patients.

### Noonan Syndrome and Autism Spectrum Disorders  It is somewhat surprising that, although NS involves a germline mutation in a pathway playing a major role in brain development, reports of autism in NS are very few. The two cases reported in the literature include a 3-year-old (Ghaziuddin et al. 1994) with a clinical diagnosis of NS but with little details of his appearance provided to confirm a diagnosis of NS although the clinical description of autism is convincing. The second report is of

diagnosis of NS although the clinical description of autism is convincing. The second report is of a 13-year-old with a clinical diagnosis of NS (Watanabe et al. 2011) but the physical description given is limited, and no genetic studies were carried out. The description of autism is, however, convincing. A familial case (Tidyman and Rauen 2008) of Leopard syndrome with high-functioning autism spectrum disorder has also been reported, in which a father and three sons with Leopard syndrome all

disorder has also been reported, in which a father and three sons with Leopard syndrome all had clinical symptoms consistent with an autism spectrum disorder. Considering the large number of patients with NS from the available published reports, NS would seem to have fewer reports of autism than the general population.

### Evaluation and Differential Diagnosis  NS is the most common of a number of conditions due to a gene mutation in the RAS/MAPK pathway (Romano et al. 2010). These include cardiofacial-cutaneous (CFC) syndrome, Costello syndrome (CS), Leopard syndrome (LS), and neurofibromatosis1 (NF1). Cardio-facial-cutaneous (CFC) syndrome, Costello syndrome (CS), and Leopard syndrome (LS) are very rare and may be distinguished by genetic testing. About 10% of patients with NF1 have a Noonan-like phenotype

be distinguished by genetic testing. About 10% of patients with NF1 have a Noonan-like phenotype but most of these will demonstrate a neurofibromin deletion. There is considerable similarity in phenotype and associated problems among all these conditions. Gene testing is avail-able. BRAF, MEK1, and MEK2 are the genes in CFC, HRAS in CS, PTPNII and RAF1 in Leopard syndrome, and neurofibromin in NF1. Other syn-dromes to be considered include Aarskog syndrome, which is caused by an X-linked

in NF1. Other syn-dromes to be considered include Aarskog syndrome, which is caused by an X-linked recessive disorder from a mutation in FGD1 gene; fetal alcohol syndrome, which is caused by maternal alcohol consumption; mosaic trisomy 22, which is characterized by similar facial features but with a chromosomal abnormality; and Turner syndrome, which is characterized by loss of one sex chromosome.

### Treatment  Treatment for NS has been discussed under the various systems affected. Early recognition is essential as appropriate management can be started early. Early genetic evaluation should be sought. Genetic testing can be diagnostic but about 25% of NS patients still have no specific genetic test available. There is a need for addi-tional studies in neuropsychological and behavioral aspects of NS so that the most helpful interventions can be started early. A recent publication (Romano

of NS so that the most helpful interventions can be started early. A recent publication (Romano et al. 2010) for the primary care physician on management guidelines in NS has recently been published. NS and the other RAS-MPK disorders have stimulated basic scientists to seek more knowledge of this pathway not only for its role in fetal development and cancer but the role of these mutated genes as we age. There is hope that some of the adverse associations such as postnatal short stature,

as we age. There is hope that some of the adverse associations such as postnatal short stature, learning difficulties, and progressive hypertrophic cardiomyopathy may be improved with appropriate genetic therapy. There is still much to learn about Noonan syndrome.

## Noradrenergic System  ### Introduction  Autism spectrum disorders (ASDs) are complex neurodevelopmental disorders with a wide range of behavioral manifestations (Persico and Bourgeron 2006). Research in the neurobiology of ASD will lead to optimal treatments for this heterogeneous group of ASDs, and the impact of ASD can be minimized through intensive intervention, especially during early childhood (Holden and Liu 2005; Johnston and Blue 2006; Lam et al. 2006; Persico and Bourgeron 2006).

(Holden and Liu 2005; Johnston and Blue 2006; Lam et al. 2006; Persico and Bourgeron 2006). Abnormalities in brain structure and function are common in ASD patients, but there is variability among subjects. Several reports have described postnatal macrocephaly in ASD patients (Amaral et al. 2008). Qualitative magnetic resonance imaging (MRI) scans suggest the occurrence of neuronal migration defects in some cases of ASD, and enlarged occipital and parietal lobes have also been reported. Causes

in some cases of ASD, and enlarged occipital and parietal lobes have also been reported. Causes of macrocephaly in ASD patients may include increased neurogenesis, decreased neuronal cell death, and increased production of non-neuronal tissue. Because neurotransmitters and neuromodulators are involved in both the differentiation and the maintenance of neurons, their over- or underproduction or availability may influence the numbers of specific neurons in different regions of the brain (Holden and

may influence the numbers of specific neurons in different regions of the brain (Holden and Liu 2005).

Neurochemical investigations in ASD have examined a wide array of transmitter systems, including serotonin, noradrenaline, dopamine, acetylcholine, oxytocin, glutamate, and gammaaminobutyric acid (GABA) systems. These studies have been complicated by the fact that ASD is a very heterogeneous disorder, which often presents with comorbid behavioral problems (Johnston and Blue 2006; Lam et al. 2006; Koves and Heinzlmann 2007). Noradrenaline (NA, also known as norepinephrine), an important

2006; Koves and Heinzlmann 2007). Noradrenaline (NA, also known as norepinephrine), an important classical neurotransmitter derived from dopamine, appears first in the noto-chord and then in neural crest before the differentiation of neuroblasts (Koves and Heinzlmann 2007). Increasingly complex theories have described the functional role of the noradrenergic system, beginning with vigilance, sensory perception, attention, and memory processes, and culminatingin complex models concerning

sensory perception, attention, and memory processes, and culminatingin complex models concerning prediction errors, decision making, and unexpected uncertainty.

### Neuroanatomy of Noradrenergic System  Initial evidence for the existence of monoamine containing neurons in the central nervous system came from pioneering studies of Dahlstrom and Fuxe (1964). The first description of the cortical distribution of noradrenergic terminals was provided soon after by the same group, followed by a wave of neuroanatomical studies using various methods, and culminating in a definitive autoradiographic study describing the extensive projections from a small pontine

in a definitive autoradiographic study describing the extensive projections from a small pontine nucleus to most regions of the brain.

Neurons that synthesize NA are restricted to the pontine and medullary tegmental regions. Seven noradrenergic cell groups, designated A1-A7, have been described in rodents, and most of these have been observed in primates, including human. Groups A1 and A2 are located in the lower portion of the medulla oblongata. Cells corresponding to group A3 lie just dorsal to the inferior olivary complex and have not been observed in primates. Group A4 consists of a band of subependymal neurons extending

have not been observed in primates. Group A4 consists of a band of subependymal neurons extending along the superior cerebellar peduncle. Group A5 is situated in the caudolateral part of the pontine tegmentum and consists of rather loosely arranged cells. Group A6 is a densely packed accumulation of cells within the locus coeruleus (LC), located in the floor of the fourth ventricle at rostral pontine levels, as described in detail below. The cells of the A7 group are situated in the rostral

pontine levels, as described in detail below. The cells of the A7 group are situated in the rostral pontine part of the lateral reticular formation and lie mainly medial to the lateral lemniscus (Dahlstrom and Fuxe 1964; Nieuwenhuys 1985; Koves and Heinzlmann 2007).

There are two major and one minor central noradrenergic pathways. One major pathway arises in the LC as the A4 and A6 regions consisting entirely of noradrenergic neurons. The second noradrenergic pathway arises from neu-rons diffusely distributed in the brainstem of the subcoeruleus region. A third, periventricular system arises in the dorsal raphe nucleus and projects to the pretectal area, habenula, thalamus, and hypothalamus (Nieuwenhuys 1985).

The LC complex, containing approximately half of the total number of NA-synthesizing neurons, is quantitatively the most important noradrenergic center of the brain. The LC is a small-pigmented nucleus nestled in the rostral dorsolateral pontine tegmentum and, in humans, consists of approximately 40,000 neurons with the most widespread efferent projections of any neurons in the brain. Noteworthy is that NA is crucial for the normal development of Cajal-Retzius cells, which are responsible for

is that NA is crucial for the normal development of Cajal-Retzius cells, which are responsible for the migration of other neurons and the formation of lamination in the cortex (Koves and Heinzlmann 2007). All layers of the cortex are innervated with a regional specificity in the density and distribution of noradrenergic varicosities.

Some areas of the cortex are more highly innervated (Chandler 2016). This innervation has been found to be higher in the frontal cortex, compared to the motor somatosensory and piriform cortices, with the highest found in the anterior cingulate cortex (Agster et al. 2013). Although the prefrontal regions receive the most NA innervation, the insular cortex uniquely is innervated by both the LC and non-LC derived NA containing fibers. NA functions as a neurotransmitter and/or neuromodulator that

non-LC derived NA containing fibers. NA functions as a neurotransmitter and/or neuromodulator that can be distributed via the bloodstream, via volume transmission as well as having widespread release sites such as synaptic varicosities. Massive axonal arborizations have huge numbers of release sites (Agnati et al. 2010; Dayan 2012). Neuromodulation can aid in hyperpolarizing or depolarizing neurons, changing their responsivity to input, altering the strengths of synapses, and shaping the

neurons, changing their responsivity to input, altering the strengths of synapses, and shaping the plasticity of those synapses. Input from a small number of neuromodulatory cells can abruptly interrupt the activity of neural networks and reorganize the elements into new functional networks (London 2018).

### Neurochemical Alterations of NA  NA is a catecholamine that is synthesized from dopamine through the action of the enzyme dopa-mine beta-hydroxylase. Almost all regions of the brain receive input from noradrenergic neurons, and the cell bodies of the most important system are located in the LC, as described above. The activity of the noradrenergic system is thought to play a critical role in attention, filtering of irrele-vant stimuli, stress response, anxiety, and mem-ory. Since many of

in attention, filtering of irrele-vant stimuli, stress response, anxiety, and mem-ory. Since many of these functions are impaired in individuals with ASD, researchers have investigated whether noradrenergic functioning is altered. Noradrenergic activity has been assessed in ASD patients by measurement of NA and its central and/or peripheral metabolites in blood, urine, and cerebrospinal fluid (Lam et al. 2006).

Noradrenergic function can be measured in the blood as NA itself, and as its principal central metabolite, 3-methoxy-4-hydroxyphenylglycol. Unlike some of the other neurotransmitter systems, central and peripheral noradrenergic systems are reported to couple with blood and cerebrospinal fluid concentrations. Some studies examining NA levels in the blood showed higher concentrations in patients with ASD compared to control subjects, whereas the results of other studies failed to show any

with ASD compared to control subjects, whereas the results of other studies failed to show any differences between patients with ASD and normal controls. In addition, the results of studies examining the excretion of NA and its metabolites in patients with ASD have been inconsistent (Lam et al. 2006).

Studies measuring levels of 3-methoxy-4-hydroxyphenylglycol in cerebrospinal fluid showed no significant difference between ASD patients and control subjects. The only consistent abnormal finding with regard to noradrenergic functioning in ASD patients is elevated plasma NA levels, as mentioned above. It is known that plasma NA has an extremely short half-life and largely reflects the state of sympathetic arousal at the time of blood drawing. It is plausible that baseline noradrenergic functioning

arousal at the time of blood drawing. It is plausible that baseline noradrenergic functioning is normal in subjects with ASD, but that the clinical procedures may lead to hyperarousal and a heightened sympathetic response, resulting in transient high levels of NA in the blood. Evidence for the relationship of dopamine and NA with ASD was gathered from the studies reported decrease in dopamine-β-hydroxylase activity and increased serum NA levels in children with ASD and in their parents. Study

activity and increased serum NA levels in children with ASD and in their parents. Study using positron emission tomography (PET) in ASD patients has revealed that increased activity of dopamine transporter (DAT) at the orbitofrontal cortex (Nakamura et al. 2010). A de novo mutation of DAT gene (SLC6A3) in individuals with ASD has been reported (Neale et al. 2012).

### NA-Related Genes and the Expression of ASD  #### Genes Involved in the Synthesis of NA  NA is synthesized from dopamine by dopaminebeta-hydroxylase. Therefore, it is of interest that mothers of children with ASD had a higher fre-quency of alleles associated with lower dopamine-hydroxylase activity, suggesting that maternal genes may influence early development of the fetal brain. Tyrosine is synthesized from phenylalanine by phenylalanine hydroxylase, and defects in the gene for

is synthesized from phenylalanine by phenylalanine hydroxylase, and defects in the gene for phenylalanine-hydroxylase result in phenylketonuria, which is often associated with ASD. Tyrosine hydroxylase is the rate-limiting enzyme in the synthesis of dopamine and NA. The tyrosine hydroxylase gene is located on the short arm of chromosome 11 at 11p15 and has been examined as a candidate gene in a number of different populations, including schizophrenia (Holden and Liu 2005).

#### Genes Involved in the Catabolism of NA  Monoamine oxidase A (MAO-A) catalyzes the oxidization of three neurotransmitters (dopamine, NA, and serotonin) implicated in the pathogenesis of neurobehavioral disorders. The MAOA gene is located on the X-chromosome at pl1.23–0.4. Mutations or variations that affect levels of this enzyme may result in changes in the levels of NA. Both aggression and borderline retardation have been reported in a family with a point mutation in the MAOA gene. In

borderline retardation have been reported in a family with a point mutation in the MAOA gene. In addition, MAOA deficient mice show both enhanced fear conditioning and passive avoidance learning. A frequent occurrence of aggressive behaviors and apparent lack of emotional responses in some individuals with ASD have been reported. Thus, this gene is considered a candidate gene for either an etiological role in ASD or in modifying the phenotype in affected individuals (Holden and Liu 2005).

role in ASD or in modifying the phenotype in affected individuals (Holden and Liu 2005). Avariable number tandem repeat polymorphism in the promoter region of the MAO-A gene has been reported to be associated with sev-eral psychiatric disorders. The two most common polymorphisms are the 3- and 4-repeat alleles, which are thought to be associated with decreased and increased transcriptional activity, respectively (Roohi et al. 2009).

#### Genes Involved in the Uptake of NA  Genes affecting the synthesis and breakdown of NA and NA transporters, as well as receptors, can affect the effective level of dopamine and NA available at the synapse. Therefore, these genes should be considered as candidate genes for ASD. The NA transporter is expressed in the placenta and is exposed to maternal blood, suggesting a role for this protein in the transplacental transport of the neurotransmitter to the fetus. Altered transport, either

in the transplacental transport of the neurotransmitter to the fetus. Altered transport, either increased or decreased, is likely to affect exposure of the fetus to inappropriate neurotransmitter levels, resulting in abnormal brain development. The NA transporter gene is located on chromosome 16 (16q12.2). Using linked polymorphisms, these transporter genes appear to be important in susceptibility to ASD (Holden and Liu 2005). A de novo mutation of DAT gene in individuals with ASD has been

to ASD (Holden and Liu 2005). A de novo mutation of DAT gene in individuals with ASD has been reported (Neale et al. 2012). The NA transporter gene (SLC6A2) was found not to be associated with cognitive and behavioral phenotypes of patients with ASD (Park et al. 2014). Direct postmortem study of ASD found no difference in the total cell count, the volume of the LC, and the numerical density.

### The New Theory  The theory proposed by Mehler and Purpura (2009) is that ASD is caused by impaired regulation of the LC. The theory stems from decades of anecdotal observations that some children with ASD exhibit improved behaviors and enhanced communication during febrile episodes. The behavioral-state changes associated with fever in ASD are considered to depend upon normalization of a functionally impaired the LC-noradrenergic system. Fever transiently restores the modulatory functions

impaired the LC-noradrenergic system. Fever transiently restores the modulatory functions of the LC-noradrenergic system and ameliorates autistic behaviors (Mehler and Purpura 2009).

There is also evidence for separate corticotropin-releasing hormone inputs to the LC that specifically modulate noradrenergic neuronal activation by physiological and environ-mental stressors (Mehler and Purpura 2009). Prenatal stressors, appropriately timed and suffi-ciently intense, could also be important in dysregulating the LC-noradrenergic system. LC neurons may be selectively vulnerable to stress-induced functional dysregulation. Prenatal stressful events are reported more frequently in

stress-induced functional dysregulation. Prenatal stressful events are reported more frequently in mothers of children with ASD than in mothers of normal control children. A significant increase in ASD prevalence following maternal exposure to hurricanes and tropical storms has been reported. Furthermore, maternal exposure to severe storms at mid-gestation results in the highest prevalence of ASD in affected cohorts.

LC activation is considered to occur when there is a change in environmental imperative, such as the appearance of a novel, unexpected event, or a change in stimulus-reinforcement contingencies. In trials, LC neurons are driven by stimuli that require a rapid behavioral adjustment such as a preparatory signal or an unex-pected reward. The LC-noradrenergic system is dysregulated by the interplay of environment, genetic, and epigenetic factors, such as chemical substances both within, as well as

environment, genetic, and epigenetic factors, such as chemical substances both within, as well as outside the genome, that regulate the expression of genes. It is believed that stress plays a central role in the dysregulation of the LC-noradrenergic system, especially in the latter stages of prenatal develop-ment when the fetal brain is particularly vulnerable.

The new hypothesis has been proposed by London (2018) to reframe the conceptualization of ASD. Much of the pathology observed in ASD is due to inadequate regulation of circuits rather than intrinsic flaws in the circuitry themselves and the activating and deactivating of circuitry is a central function of the noradrenergic system that plays a central role and explains much of the dysregulation which create the symptoms present in ASD, although other neuromodulators play and important role.

which create the symptoms present in ASD, although other neuromodulators play and important role. Flaws in the functioning of the noradrenergic system are likely not due to primary pathology in the LC neurons themselves, but rather might be secondary to afferent input to the LC or a deficit in the circuitry. This hypothesis needs to be understood as dysregulation rather than hyper- or hypo-functioning. Thus, ASD could be conceptualized as a disorder largely due to a failure of homeostatic

Thus, ASD could be conceptualized as a disorder largely due to a failure of homeostatic mechanisms.

### Clinical Implications  Benefits from NA agonists and antagonists in ASD patients have been reported, inconsistent, and clouded with adverse events. Tricyclic antidepres-sants such as imipramine, desipramine, and nor-triptyline are NA reuptake blockers, although they have other actions, such as dopamine presynaptic reuptake blockade. Both desipramine and clomip-ramine reduced hyperactivity, whereas clomipra-mine had additional effects on stereotypic, compulsive, and ritualistic behavior (Lam

clomipra-mine had additional effects on stereotypic, compulsive, and ritualistic behavior (Lam et al. 2006). Alpha 2 agonists such as clonidine and guanfacine, which dampen NA action, may be helpful for managing hyperactivity, impulsivity, and irritability in young people with ASD. These findings suggest a role of the noradrenergic system in ASD or some of the behaviors that are often present in persons with ASD (Holden and Liu 2005).

Postsynaptic beta-adrenergic blockers such as propranolol and nadolol may be useful for managing aggression, self-injury, and agitation (Ward et al. 2013), but they appear to have no consistent effect on manifestations of ASD (Lam et al. 2006). The use of molecular biology to validate clinical psychiatric phenotypes in children with ASD may clarify the response to treatment and long-term clinical management (Roohi et al. 2009). The neuromodulation of the brain of individuals with ASD could be

management (Roohi et al. 2009). The neuromodulation of the brain of individuals with ASD could be a powerful strategy, as virtually all of the medications used in psychiatry function as neuromodulators operating on the serotonin, dopamine acetylcholine and GABA, as well as NA neuron systems. Through recognition of the neuromodulatory mechanisms for the symptoms, treatments can be devised (London 2018).

## Norepinephrine  ### Synonyms  Noradrenaline  ### Definition  Norepinephrine (NE) is a central and peripheral neurotransmitter. The cell bodies of most NE neurons in the brain are located in the brain stem, but project throughout the central nervous system where they are especially important in arousal and attention. NE is also the principal neurotransmitter of the sympathetic nervous system in the periphery (the body), a system critical in arousal and which is closely integrated with the

in the periphery (the body), a system critical in arousal and which is closely integrated with the central NE system. Norepinephrine is produced from the essential amino acid tyrosine after ring and side-chain hydroxylation and decarboxylation. Measurement of NE and a range of related compounds in cerebrospinal fluid, plasma, and urine have indicated that global basal function of central and peripheral NE appears unaltered in autism; however, the NE systems may be hyperresponsive to stress.

## Neurotypical  ## Normal Curve  ### Synonyms  Bell-shaped curve; Normal distribution; Standard normal distribution  ### Definition  The normal curve represents the shape of an important class of statistical probabilities. The normal curve is used to characterize complex constructs containing continuous random variables. Many phenomena observed in nature have been found to follow a normal distribution. Some human attributes such as height, weight, intelligence, and even social skills can be

Some human attributes such as height, weight, intelligence, and even social skills can be said to be normally distributed. For example, most people’s height clusters around the population mean, and an equally small proportion of people are represented at either extreme end of the distribution. When represented graphically, the resulting shape resembles that of a bell where there is a single peak at the mean, while the tails extend to the right and left into infinity. Thus, the probability of

at the mean, while the tails extend to the right and left into infinity. Thus, the probability of being 501000 is relatively high, while the probability of being 70400 is much smaller. Raw data from any number of disciplines can be transformed into standard scores using a simple formula. Once scores have been standardized, the mean of the curve is 0 and the standard deviation is 1. This is referred to as the standard normal distribution. Performance on most major standardized tests of

is referred to as the standard normal distribution. Performance on most major standardized tests of intelligence produces standardized scores defined as IQ score and reflects a population mean of 100 and a standard deviation of 15 points. The normal curve is the most prominent probability distribution model used in statistics and psychometrics.

All normal distributions comply with the following postulates: *   68% of all scores fall within + or - 1 SD from the M. *   95% of all scores fall within + or - 2 SD from the M. *   99% of all scores fall within + or - 3 SD from the M.  ## Normal Distribution  Normal Curve  ## Normal LanguageDevelopment  ### Synonyms  Child language; Language acquisition  ### Definition  Normal language development involves the acquisition of the rules for producing and understanding the sounds, words,

involves the acquisition of the rules for producing and understanding the sounds, words, sentences, and conventions for their socially appropriate use in the speech community in which a child is living. Language acquisition is a uniquely human capacity. Although there are many forms of animal communication, these do not show the grammatical generativity or cultural transmission characteristic of human languages (Tomasello 2008). Milestones of communication acquisition, such as first words by 12

human languages (Tomasello 2008). Milestones of communication acquisition, such as first words by 12 months, word combinations by 24 months, and sentences by 36 months, are often used to monitor language growth in children and help parents and professionals determine whether a child is showing signs of falling behind and needing intervention. “Communicative competence,” the ability to use language in an age-appropriate way to accomplish social goals, depends on the acquisition of skills in each

in an age-appropriate way to accomplish social goals, depends on the acquisition of skills in each of three domains of language specified by Bloom and Lahey (1978): form, content, and use. Form refers to the acquisition of rules for producing sounds to form words (phonology) and words to form sentences (grammar); content refers to vocabulary development and understanding the relationships between words (semantics); use refers to pragmatic aspects of language that govern its social

between words (semantics); use refers to pragmatic aspects of language that govern its social appropriateness. Early communication warning signs for infants or toddlers who may be at risk for developmental disorders such as hearing impairment, autism, language, or developmental delay include failure to respond to sound or voice by 4–6 months; failure to babble or respond to name by 12 months; lack of awareness of and interest in others by 12 months; failure to talk, attempt to communicate, or

of awareness of and interest in others by 12 months; failure to talk, attempt to communicate, or show interest in pretending by 18 months; producing very few words by 24 months; and failing to combine words by 30 months. In addition, any child who loses previously developed speech-language or social skills may be evidencing risk. Children presenting with these signs should receive evaluations for developmental disabilities with experienced early interventionists. It is very common for children

developmental disabilities with experienced early interventionists. It is very common for children with ASD to show delays in language development; however, many children (10–15% of toddlers) show delays in language acquisition that are NOT associated with ASD. In these children, 75% resolve their language delays by the age of 5 and go on to have adequate language and school achievement.

## Normalization  ### Synonyms  Developmentally appropriate practice  ### Definition  A principle that promotes providing services for individuals with developmental disorders (e.g., autism spectrum disorders, or ASDs) and learning disorders in order to ensure their access to environments and experiences as similar as possible to those available to typically developing individuals. Nirje (1980) defined normalization as making “the regular circumstances and ways of life or society” (p. 33)

defined normalization as making “the regular circumstances and ways of life or society” (p. 33) available to individuals with learning difficulties. When first adopted, normalization was instrumental in reducing the frequently inhumane institutionalization of these individuals and pro-viding both community-based and other alternative services. The normalization movement began in the 1960s and 1970s in Scandinavia, with other European countries and the United States following. Initially,

and 1970s in Scandinavia, with other European countries and the United States following. Initially, normalization served as a philosophical foundation for reorganizing the provision of services for individuals with developmental delays (Rehm and Bradley 2005). Following the normalization-inspired deinstitutionalization movement, some interventionists and researchers have contended that normalization is not the ideal approach to current interventions for ASDs and have argued instead for the

is not the ideal approach to current interventions for ASDs and have argued instead for the necessity of a more individual-focused and strength-based philosophy (e.g., Mesibov 1990). However, normalization has continued to be an overarching philosophy in approaches to treatment for ASDs and other developmental disabilities.

Normalization reflects the need for individuals with ASDs and other disabilities to have access to equality, quality of life, and human rights (Renzaglia et al. 2003). This concept serves as an ideological framework for inclusion, a principle emphasizing the need for programs to support integration of individuals in schools, neighbor-hoods, and communities, regardless of disability status. The Americans with Disabilities Act and similar laws in other countries, which prohibit discrimination

Americans with Disabilities Act and similar laws in other countries, which prohibit discrimination against individuals based on disability, are also consistent with normalization. In theory, normalization is designed to be applied along a continuum of disability, with various levels of inclusion possible, depending on the level of impairment. Because of the difficulty of conducting randomized controlled studies of normalization practice, current evidence on the outcomes of inclusion practices in

studies of normalization practice, current evidence on the outcomes of inclusion practices in schools is preliminary (Ferraioli and Harris 2011). Inclusion of children with ASDs who have not received early intensive behavioral intervention or who have not made significant treatment gains is not supported, but inclusion for children who have made these gains can more often be feasible and successful (Ferraioli and Harris 2011).

## Normative Data  ### Synonyms  Benchmark data; Norms; Population norms  ### Definition  Normative data is data from a reference population that establishes a baseline distribution for a score or measurement, and against which the score or measurement can be compared. Normative data is typically obtained from a large, randomly selected representative sample from the wider population. They can be used to easily transform individual scores or measurements directly into standardized z-scores, T

used to easily transform individual scores or measurements directly into standardized z-scores, T scores, or quantiles. Examples of psychological tests that make use of normative data in scoring include the Wechsler Adult Intelligence Scale (WAIS), the Wechsler Intelligence Scale for Children (WISC), and the Vineland Adaptive Behavior Scales. Normative data can also incorporate additional variables such as age and gender, when these variables are expected to have significant effects on the

such as age and gender, when these variables are expected to have significant effects on the distribution of measurements; head-circumference-for-age, height-for-age, and weight-for-age norms provided by the CDC (Kuczmarski et al. 2002) and WHO (WHO Multicentre Growth Reference Study Group 2007) are examples.

## Norm-Referenced Assessment  Language Tests  ## Norm-Referenced Testing  Norm-referenced testing measures by comparing a characteristic of an individual with the same characteristic in comparable group of others, the normative group.

Assessment or evaluation of individuals with ASD commonly involves psychological or psychometric tests. These are systematic (rule-governed or standardized) procedures devised to measure psychological characteristics. Commonly, these attributes, characteristics, states, and functioning are not directly observable but are inferred from behavior – what people say and do. Psychological tests are designed to provoke specific instances of behaviors believed to reflect the attribute of interest,

designed to provoke specific instances of behaviors believed to reflect the attribute of interest, enabling these to be quantified: getting someone to complete shape puzzles and then counting the number correctly completed is a way of quantifying behaviors assumed to reflect underlying spatial abilities; or the count of the number of “Yes” answers to questions about the presence or absence of certain characteristics might be used as the basis of an index of the severity of ASD characteristics. The

characteristics might be used as the basis of an index of the severity of ASD characteristics. The number of correctly completed puzzles or other index derived directly from performance constitutes the “raw score” which, on its own, is meaningless. Meaning is achieved when the raw score is compared with some standard or norm, such as the average performance of comparable individuals – a normative group – on the same tasks. The number of correct responses or answers can be compared with the

group – on the same tasks. The number of correct responses or answers can be compared with the group average: if above the group average, it is then inferred that their ability is above (the group) average. Likewise, a scale to identify severity of ASD symptoms may contain a list of clinical signs and a severity rating scale for each. The total of the severity ratings when compared with the average score of a group of individuals diagnosed with ASD provides a measure of severity. Generally,

score of a group of individuals diagnosed with ASD provides a measure of severity. Generally, where an individual’s raw score on a test can be interpreted in relation to an index from a group given the same test, the procedure is a “norm-referenced” test. There are a number of different but interchangeable ways of expressing this comparative relationship using more refined units, including percentiles, standard scores, T-scores, and stanines (Kaplan and Saccuzzo 2009).

The nature of the normative data is a key determinant of the interpretability of any test. If the psychological attribute is something common to people, for instance, intelligence, the normative criterion should be derived from a large sample representative of the population with given the same test. This would enable interpretations such as “X’s” intelligence (a test score from a test designed to measure intelligence) is above, similar to, or below the average. A norm-referenced test for a

to measure intelligence) is above, similar to, or below the average. A norm-referenced test for a particular feature of ASD such as degree of social interest among individuals with ASD would require its reference group to be a representative sample of individuals reliably diagnosed with ASD given the same procedure. Appropriate representative sampling is one of the many requirements for a clinically acceptable test. Other requirements include instrument validity (evidence that it measures what

acceptable test. Other requirements include instrument validity (evidence that it measures what it is supposed to) and other indicators of test quality (Groth-Marnat 2009; Kaplan and Saccuzzo 2009). A clinically acceptable test result will depend on the use of a valid test with a normative group whose relevant main characteristics (age, gender, etc.) match those of the testee, cooperation of the testee, and a competent tester.

## Norms  Normative Data  ## Norpramin  Desipramine  ## Nortriptyline  ### Synonyms  Aventyl hydrochloride; Nortriptyline hydrochloride  ### Definition  Nortriptyline is a prescription drug in the group of tricyclic antidepressants initially FDA-approved for medical use in the year 1964 whose active ingredient nortriptyline hydrochloride has the chemical formula C19H21N·HCl. This drug inhibits histamine, 5-hydroxytryptamine, and ace-tylcholine activity; increases the pressor effect of

histamine, 5-hydroxytryptamine, and ace-tylcholine activity; increases the pressor effect of norepinephrine; and blocks that of phenethylamine. Nortriptyline is metabolized by the liver. This drug is FDA-approved for the treatment of depressive symptoms especially endogenous depression and can be used to treat symptoms of ADHD and Tourette’s disorder. Observed side effects include sedation, anticholinergic effects, weight gain, and orthostatic hypotension.

## Nortriptyline Hydrochloride  Nortriptyline  ## Norway and Autism  ### Historical Background  The history of autism in Norway is not very well documented. However, we know that the first diagnosis using the term autism was applied dur-ing the 1950s, as a result of Leo Kanner’s seminal work in the early 1940s (Kanner 1943). During the 1950s and 1960s, most individuals diagnosed with autism were institutionalized in centralized institutions, so-called institutions for “the mentally retarded”

institutionalized in centralized institutions, so-called institutions for “the mentally retarded” together with other disabled and impaired individuals. The National Competence Program for Autism released a report in 1997, which dealt with the life span and quality of life for ten of the first diagnosed individuals in Norway (Solbakken 1997). At that time, the individuals were in their late 40s, and the parents which were interviewed were in their elderly days. The general commonalities reported

the parents which were interviewed were in their elderly days. The general commonalities reported for the cases comprised institutionalizing, few resources, lack of individual facilitation, abuse, and malpractice during the 1950s, 1960s, and parts of the 1970s. Normally, the parents of children who were diagnosed with autism in this period were resourceful and had contacts within the field of autism, whereas others were often diagnosed with oligophrenia. Treatment was often related to sedation

whereas others were often diagnosed with oligophrenia. Treatment was often related to sedation by drugs and strapping, and there was a lack of structured behavioral and skill training. The institutionalization was more custody facility than anything else during this period of time.

After Norway had become an increasingly prospering oil nation in the late 1960s and during the 1970s, major changes happened in both the health sector and also in the educational system. There was a heavy debate in the 1970s and 1980s focusing on the wrongdoings of the larger institutions, and the human right to participate in the society was proclaimed. A law regulating special schools for disabled was incorporated into the general law of education in 1975, and the responsibility for

for disabled was incorporated into the general law of education in 1975, and the responsibility for education and training of children with autism was transferred from the state-funded institutions to each county council which resulted in a reduction of the larger institutions and a stronger focus on special schools for children with disabilities. Noteworthy, this implied that children and individuals with autism passed the same system as individuals with other disabilities during the time span

with autism passed the same system as individuals with other disabilities during the time span from the 1950s to as late as the 1980s. In 1965, the Autism Association of Norway (Autismeforeningen) was established; however, it was not before 1982 that the same society established a professional autism advisory board with the intended goal of securing parents, caregivers, teachers, and special education teachers with professional advice on autism. Both parents and professionals were recommended

teachers with professional advice on autism. Both parents and professionals were recommended to partnership through the autism association. Today, the association has approximately 4,500 members across Norway.

Together with a number of new educational laws and governmental regulations during the 1990s and early 2000s, the prevailing special schools were discontinued, and children within the autism spectrum and other disabilities were included into their local kindergarten and school. Though extra resources were made available through assessments, the educational school psychology services enable them to participate in special need education programs provided by specially trained teachers. Over the

to participate in special need education programs provided by specially trained teachers. Over the past two decades, the assessment and diagnostic procedures have been conducted by specialized child disability clinics (habilitation units or child and adolescent psychiatry), which can be found in each county in Norway. Norway has a public healthcare system, securing everyone the right to the same assessment and diagnostic procedures. Children with autism are mostly living at home with their

assessment and diagnostic procedures. Children with autism are mostly living at home with their parents, attending regular kindergartens and schools mainstreamed with typically developed children, with follow-up by the local special education advisors. Intervention methods used in Norway during the 1980s, 1990s, and 2000s have been primarily either a combination of visual communication training or TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) or ABA

TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) or ABA (applied behavior analysis) (Lovaas et al. 1981).

### Legal Issues, Mandates for Service  Norway has a wide range of services for children with special need and which are governed by law. All children, including those with disabilities such as an autism spectrum disorder, have the right to an equal education that considers each individual’s needs. Those with special needs have the right to an individually tailored school day with special education (The Norwegian Education Law 1998). There are different financial aid schemes for individuals

(The Norwegian Education Law 1998). There are different financial aid schemes for individuals with ASD and their families. The Norwegian Work and Welfare Agency (NAV) provides individuals with different impairments of financial aid if their impairment necessitates extra care and supervision. This financial aid shall also ensure stimulation, education, and train-ing at home. The same agency also offers an extra financial aid to those who have additional expenses related to the diagnosis, e.g., if a

an extra financial aid to those who have additional expenses related to the diagnosis, e.g., if a special diet creates additional costs to the family (The Norwegian Work and Welfare Agency 2014). Each municipality is responsible for handling applications for subsidies for care from parents or caregivers of children with disabilities such as autism. Such a subsidy can be given as a form of salary that is often given to parents with an additional and heavy workload as parents of a child/children

that is often given to parents with an additional and heavy workload as parents of a child/children with disabilities (The Norwegian Department of Health and Care 2011). All caregivers of children with disabilities are also entitled to 20 days with full payment to stay at home with sick children.

### Diagnosis and Prevalence  With the ICD-10 (1992), which is the diagnostic system used in Norway, the term autism spectrum disorders and the subgroup diagnoses was established in Norway as a way to standardize the diagnostics and assessment of individuals suspected for ASD. There are national guidelines for assessment and diagnostics of children with suspected ASD. The guidelines, however, are not detailed and are subject to different practice at each clinic. A regional study conducted in

not detailed and are subject to different practice at each clinic. A regional study conducted in the southeastern part of Norway indicated that age at diagnosis is during preschool age at approxi-mately 46.4 months and thus resembling similar countries’ diagnostic age (Larsen 2015). Another study using the Norwegian Patient Registry indi-cates that some of the subgroups within ASD often is not diagnosed until late childhood or early adolescence (Surèn et al. 2012). Sponheim and Skjeldal (1998)

until late childhood or early adolescence (Surèn et al. 2012). Sponheim and Skjeldal (1998) reported prevalence estimates in Norway to be approximately 4–5 per 10,000 for childhood autism in a popula-tion of children from 3 to 14 years, a somewhat low prevalence compared to other studies at the time, though they focused on autistic disorder specifically and did not recruit children across the whole spectrum. A recent study indicated a fourfold increase with prevalence of 51 per 10,000 when

whole spectrum. A recent study indicated a fourfold increase with prevalence of 51 per 10,000 when considering the whole range of the spectrum (Isaksen et al. 2012). Other estimates from other studies with Norwegian samples (Posserud et al. 2010; Surèn et al. 2012) indicate that there has been a rise in prevalence of ASD akin to what is typically found in other international studies (e.g., UK and US).

### Overview of Current Treatments and Centers  Norway has a public health system, providing all individuals the same rights to assessment and treatment. Each regional hospital and all the major university hospitals are state funded and provide assessment and some kind of intervention for children with suspected and diagnosed ASD. There are national guidelines for assessment and diagnostics of children with suspected ASD. The guidelines, however, are not detailed and are subject to different

children with suspected ASD. The guidelines, however, are not detailed and are subject to different practice at each clinic. Current intervention programs provided by the hospital clinics are mainly ABA and derivates of ABA (such as Early Intensive Behavioral Interventions (EIBI)). Many use versions of Picture Exchange Communication System (PECS), a form of augmentative and alternative communication for children with ASD and limited language. There exist some regions in Norway where pivotal

for children with ASD and limited language. There exist some regions in Norway where pivotal response therapy (PRT) is the most established intervention method; however, this is only the case in a fraction of Norway’s 19 counties. The municipalities are also responsible for intervention and training in the context of kindergartens and schools; the most used intervention focus is parts of the TEACCH method, whereas hospital clinics are to a higher degree recommend ABA and PRT also in

of the TEACCH method, whereas hospital clinics are to a higher degree recommend ABA and PRT also in kindergartens and schools. There are currently agencies in each healthcare region in Norway dealing with among other autism spectrum disorders. Currently, there still exist a few schools that act as resource centers for children with ASD: Nordvoll and Haug in the Oslo region and Frydenlund in Drammen as the most known. They teach a substantial number of pupils, both in the school, but also

Drammen as the most known. They teach a substantial number of pupils, both in the school, but also through supervising other schools working with children with ASD.

### Overview of Research  The most significant research in Norway on ASD during the last 10 years is the MoBa study (mother-child study), a longitudinal pregnancy population cohort, following over 100,000 children as they grow older. Linked to this study is the Autism Birth Cohort study (Stoltenberg et al. 2010) with the purpose of identifying all children with ASD in MoBa. The key aims are to disentangle causes of ASD, both genetic and environmental and their interaction, linked to timing of

causes of ASD, both genetic and environmental and their interaction, linked to timing of exposure. The most known publication from this study is mother’s usage of folic acid around conception and the reduce risk of having a child with autistic disorder (Surén et al. 2013b). Other Norwegian studies have investigated a range of topics such as Asperger syndrome related to the theory of mind (Kaland et al. 2002, 2008), comorbidity (Gjevik et al. 2015; Bakken et al. 2010; Helverschou et al. 2011),

et al. 2002, 2008), comorbidity (Gjevik et al. 2015; Bakken et al. 2010; Helverschou et al. 2011), language (Kalandadze et al. 2016; Nordahl-Hansen et al. 2014; Tetzchner and Martinsen 1981; Vulchanova et al. 2012) and ASD related to symptoms of depression (Andersen et al. 2015). Different researchers have also been involved in publications related to screening (Havdahl et al. 2016; Posserud et al. 2009; Stenberg et al. 2014; Øien et al. 2016) and other issues of measures and assessment of

et al. 2009; Stenberg et al. 2014; Øien et al. 2016) and other issues of measures and assessment of persons with ASD (e.g., Bishop et al. 2016; Øien and Eisemann 2016; Nordahl-Hansen et al. 2016). Some of the notable psych-educational treatment studies have mainly targeted preschool children and investigated effects of early intensive behavior interventions (Eikeseth et al. 2002), low-intensity behavioral treatment (Eldevik et al. 2006), and joint attention and joint engagement intervention

behavioral treatment (Eldevik et al. 2006), and joint attention and joint engagement intervention (Kaale et al. 2014).

(Most studies and researchers on ASD in Norway is conducted or linked to non-private institutions including different universities, university hospitals, and university colleges.)

### Social Policy and Current Controversies and Training  The largest organization is the Norwegian Autism Association, which is a parent and care provider organization with approximately 4,500 members with the aim of increasing the knowledge about ASDs among parents, teachers, other professionals, and the individuals with ASDs themselves. Besides this organization, there is a lack of social interest and focus on ASDs in Norway. The latest prevalence study in Norway showed that 0.9% of all

interest and focus on ASDs in Norway. The latest prevalence study in Norway showed that 0.9% of all children aged 12 were diagnosed with ASDs, and the number for children between 6 and 12 years old was 0.6% (Surén et al. 2013). There are few organized training programs for parents, teachers, and other professionals, with differences between the 19 counties. However, the regional competence units and hospital clinics offer various courses for parents, teachers, and others who are interested in

and hospital clinics offer various courses for parents, teachers, and others who are interested in learning more. Obviously, there is much room for improvement and especially for developing national guidelines for intervention for children and individuals with ASDs in Norway.

## No-Tech Communication Device  Communication Board  ## Notice of Recommended Educational Placement (NOREP)  ### Synonyms  IEP signature page  ### Definition  The Notice of Recommended Educational Placement, or NOREP, is a form completed at the end of the process of developing an individualized educational program (IEP) for a student receiving special education services. It must be provided to parents whenever a school district or other educational entity proposes to change the student’s

to parents whenever a school district or other educational entity proposes to change the student’s program or placement. The NOREP form summarizes the educational placement for the student and explains the parents’ rights to agree or disagree. By signing the NOREP, parents agree to the placement decisions contained within the IEP as well as the IEP goals and specially designed instruction that will govern the child’s special education program. If parents disagree with the provisions contained

govern the child’s special education program. If parents disagree with the provisions contained within the IEP and NOREP, the NOREP form provides options for requesting an informal meeting, mediation, or due process hearing. By requesting mediation or a due process hearing, parents of school age children can ensure that their child will stay in his or her current educational placement until dispute resolution occurs. This benefit is called the stay-put requirement or pendency. Parents may agree

resolution occurs. This benefit is called the stay-put requirement or pendency. Parents may agree with portions of the NOREP and IEP and disagree with other parts. In such instances, the parents may indicate the provisions accepted on the NOREP form and note the areas of disagreement.

## Novel Antipsychotics  Atypical Antipsychotics  ## Novo-Peridol  Haloperidol  ## N-Pthaloylglutamide  Thalidomide  ## NRDLS  Reynell Developmental Language Scales  ## NRXN1  Neurexin 1  ## Nuclei of Raphe  Midbrain Raphe  ## Nutritional Interventions  ### Definition  Nutrition interventions involve supplementing the diet with vitamins, minerals, or other substances in an effort to improve health and alleviate the core symptoms of autism and associated behavior. A common example is for

health and alleviate the core symptoms of autism and associated behavior. A common example is for individuals with autism to consume high doses of vitamin B6 combined with magnesium.

### Historical Background  Nutritional supplements are often used in an attempt to improve disorders, especially mental health conditions, and have been used for autism in particular since the 1960s (Levy and Hyman 2008). Bernard Rimland, a proponent of vitamin B6 therapy in particular, traces the origin back to the 1966 report of abnormal metabolites in the urine of children with autism by A. F. Heeley and G. E. Roberts; these metabolites were said to be normalized by vitamin B6 (Rimland

A. F. Heeley and G. E. Roberts; these metabolites were said to be normalized by vitamin B6 (Rimland 2008). The next article to address the use of vitamins to treat autism was published by Bonisch in 1968, and research continued for the next four decades. Other nutritional interventions proposed during this time include high doses of vitamins C, A, and D, as well as minerals such as magnesium, iron, selenium, calcium, and zinc. Enzymatic supplements include probiotics and digestive enzymes.

iron, selenium, calcium, and zinc. Enzymatic supplements include probiotics and digestive enzymes. Proteins/amino acids, specifically carnosine, tryptophan, and tetrahydrobiopterin, are supplemented because of proposed metabolic disturbances in children with autism (see Amino Acids). Fatty acids (polyunsaturated, omega 3) are administered because they are known to have a role in typical brain development (Levy and Hyman 2008). In addition to dietary supplements and nutrition changes, the

development (Levy and Hyman 2008). In addition to dietary supplements and nutrition changes, the following supplements are sometimes used: secretin (see Secretin), melatonin, DMG/TMG (see DMG), piracetam, folate, carnitine, Ginkgo biloba, St. John’s wort, and inositol (Levy and Hyman 2008; Rossignol 2009).

### Rationale or Underlying Theory  Nutritional supplements are given to children with autism because of observed or suspected nutritional, hormonal, metabolic, or digestive abnormalities.
 ### Goals and Objectives  Nutritional supplements are meant to correct nutritional imbalances that some theorize may be responsible for the core symptoms of autism and/or comorbid behavioral disturbances.

### Treatment Procedures  Nutritional interventions are supplemented to the diets of children with autism and are administered in pills, capsules, powders, or liquids. A multivitamin/mineral complex may deliver some or all of these vitamins and minerals at once. A common example is combined B6-magnesium treatment.

### Efficacy Information  Currently, no reliable evidence exists to support the efficacy of any nutritional supplement for the core symptoms of autism or other behaviors associated with autism. In a 2011 review, Huffman et al. categorized all of the following as weakly supported and in need of more, better research: vitamins, iron, melatonin, fatty acids, and digestive enzymes. Although improvement in social interaction after protein/amino acid supplementation (i.e., carnosine and

improvement in social interaction after protein/amino acid supplementation (i.e., carnosine and tetrahydrobiopterin) has been reported, more research is still needed (Huffman et al. 2011). A 2005 Cochrane review of one of the most popular nutrition interventions, combined B6-magnesium treatment, concluded that this treatment cannot be recommended at this time due to methodological weaknesses in the efficacy studies (Nye and Brice 2005). A large majority of the vitamin B6 efficacy studies

in the efficacy studies (Nye and Brice 2005). A large majority of the vitamin B6 efficacy studies performed since 1968 (16 of 19) had too many limitations to be included in the review. The remaining three studies found no benefit from B6 therapy but were too small to support definitive conclusions (Nye and Brice). Accordingly, Nye and Brice concluded that at this time, no recommendation can be made regarding this treatment.

### Outcome Measurement  Nutrition interventions are intended to reduce autism symptoms and improve adaptive functioning. Therefore, if clinical trials of nutrition interventions are undertaken, outcome measures should include measures of autism symptoms such as the ADOS and measures of adaptive behavior such as the Vineland. Also, because many nutrition interventions are meant to target other comorbid behavior problems, well-validated measures of these behaviors (i.e., sleep, aggression,

comorbid behavior problems, well-validated measures of these behaviors (i.e., sleep, aggression, self-injury, etc.) should be included.

### Qualifications of Treatment Providers  Supplementing diet with nutritional interventions should be discussed with a board-certified physician, as high doses of vitamins, minerals, or other substances may produce side effects.

## Nutritional Issues  Gastrointestinal Disorders and Autism Medical Conditions Associated with Autism  ## Nytol® Quick Caps [OTC]  Diphenhydramine  ## Nytol® Quick Gels [OTC]  Diphenhydramine  ## O  ## Object Permanence  ### Definition  Object permanence is the awareness that objects exist when they are no longer in sight. Between 8 and 10 months of age, infants begin to search for objects that disappear, indicating that they understand that objects still exist after they disappear from view.

disappear, indicating that they understand that objects still exist after they disappear from view. Piaget (1952) first described this phenomenon as part of the sensorimotor stage of cognitive development. Over the first several months of life, infants gradually become more and more interested in the environment, particularly in toys and objects. Before about 8 months of age, infants lose interest in objects that are removed from plain sight. During the next several months, however, infants begin

objects that are removed from plain sight. During the next several months, however, infants begin to mentally represent objects beyond what is perceived in the moment, and thus begin to search for things that are hidden from view. Object permanence has not been extensively assessed in infants and toddlers with ASD but is thought to be intact in preschoolers with ASD (Carpenter et al. 2002; Dawson and McKissick 1984; Sigman and Ungerer 1981).

## Objective  ### Synonyms  Behavioral objectives; Benchmarks; Instructional objectives; Milestones; Performance objectives; Steps

### Definition  Objectives are often called instructional objectives in the individual educational plan for children receiving special education services. These instructional objectives are statements that describe the specific instruction for an individual student and provide criteria to measure the effectiveness of the instruction. Mager’s performance objective model describes three essential criteria for an objective. An objective must contain a clearly stated behavior or skill, the

criteria for an objective. An objective must contain a clearly stated behavior or skill, the conditions under which that behavior or skill will occur, and how that behavior or skill will be measured (criteria) to determine achievement of the objective (Mager 1984). It is imperative that objectives be written in terms that are both observable and measurable. An example of an objective that aligns with this model might be: “When given a piece of primary paper and a pencil, Susie will print her

with this model might be: “When given a piece of primary paper and a pencil, Susie will print her first and last name with 100% accuracy in spelling.”

## Observational Assessments  ### Definition  Observational assessments involve obtaining evaluative information through direct observation. Although observational assessments could potentially be used in any domain, they most often are used for behavior, social-emotional functioning, and language. A record of the examiner’s observations is kept for later interpretation. Considerations in conducting observational assessments include decisions about which specific behaviors to target for

conducting observational assessments include decisions about which specific behaviors to target for observation; when, where, and for how long observations should be conducted; and the validity and reliability of observational data. If observational assessments are reliable, then multiple examiners observing a student’s behavior at the same time should have a high degree of agreement in their records of specific behaviors; if observations are valid, they should target behaviors that are well

records of specific behaviors; if observations are valid, they should target behaviors that are well defined and representative of concerns about a student’s social-emotional, behavioral, or linguistic functioning. Interpretation of observational assessments is another important issue. In some situations, as when a teacher has implemented a behavioral or linguistic intervention, post-intervention observational data may simply be interpreted in relation to pre-intervention data on the same

observational data may simply be interpreted in relation to pre-intervention data on the same student. In other situations, for example, when a child is evaluated for a possible autism spectrum disorder (ASD), observational data may be interpreted with reference to normative data on students of the same age and/or in relation to checklists of behaviors typical of children with ASD.

## Observational Learning  ### Definition  Observational learning occurs when a person develops a new behavior or skill after watching someone else receive reinforcement for engaging in the behavior or performing the skill. The process of observational learning occurs without any direct instruction or reinforcement (Catania 2007; MacDonald and Ahearn 2015). Observational learning is comprised of four discrete skills: attention, generalized imitation, delayed imitation, and consequence

of four discrete skills: attention, generalized imitation, delayed imitation, and consequence discrimination. In real-life situations, observational learning occurs in the following sequence: (1) observing someone else perform a behavior, (2) observing the consequence for performing the behavior (i.e., reinforcement), and (3) performing the behavior (MacDonald and Ahearn 2015). An example of this would be a young child watching a sibling play with a parent. In an observational learning

of this would be a young child watching a sibling play with a parent. In an observational learning situation, the sibling would pick up a toy, play with it in a certain way, and the parent would provide praise and interaction. The observing child might then pick up a toy and play in the same way. This would be a naturalistic example of observational learning in that it involves observation of a behavior (toy play), observation of a consequence (parent praise and interaction), and performing the

(toy play), observation of a consequence (parent praise and interaction), and performing the behavior (toy play in the same way). Although observational learning is not a concept or intervention specific to individuals with autism spectrum disorders (ASD), individuals with ASD benefit from the analysis and interventions related to observational learning.

### Historical Background  Early work in observational learning focused on the role of the model in behavior change (Bandura and Huston 1961; Bandura et al. 1963). Bandura et al. (1963) demonstrated that behavior change can occur through observation of a model in a natural context without direct reinforcement. Bandura and Huston (1961) also explored the role of vicarious reinforcement in learning new skills after observing a model. They noted that vicarious reinforcement occurs when there is

new skills after observing a model. They noted that vicarious reinforcement occurs when there is no extrinsic reinforcement for a behavior. Instead, they hypothesized that intrinsic reinforcement may be relevant in this type of learning situation. Additional descriptions of observational learning have included social watching and imitation (Miller and Dollard 1941), modeling, copying, imitation, echoing, parroting, and vicarious behavior change (Greer et al. 2006). Kazdin (1973) evaluated

echoing, parroting, and vicarious behavior change (Greer et al. 2006). Kazdin (1973) evaluated whether children who observed other children receiving social reinforcement such as praise for target behavior would then engage in the same behavior. Results of the study demonstrated that the participants who observed children engaging in a target behavior then engaged in those same responses without direct teaching or reinforcement. This study further strengthened the conceptual understanding of

direct teaching or reinforcement. This study further strengthened the conceptual understanding of observational learning (Birnbrauer 1976; Williams et al. 2004). More recent work differentiates observational learning from imitation and modeling. Although imitating is part of observational learning, observational learning also involves responding based on the observed consequences (MacDonald and Ahearn 2015; Taylor et al. 2012).

### Rationale or Underlying Theory  A variety of studies have demonstrated the importance of learning from others and found that many individuals with ASD do not learn in this way. For example, individuals with ASD do not always imitate the behavior of others, which is a primary component of observational learning (Williams et al. 2004). We know that individuals with ASD often require direct, intensive instruction and reinforcement to learn new skills; yet learning in this manner could be time

instruction and reinforcement to learn new skills; yet learning in this manner could be time consuming and may require a high level of resources. Learning through observation is not only foundational in child Development, but it is advantageous in maximizing learning opportunities for individuals with ASD who are exposed to a variety of environments. Learning through observation is not only foundational in child development, but it is advantageous in maximizing learning opportunities.

foundational in child development, but it is advantageous in maximizing learning opportunities. Individuals with an ASD are exposed to numerous locations in which they learn and practice new skills. Across these environments, there is a wide variability in terms of direct reinforcement or support for facilitation of expected behaviors. Given this, an understanding of observational learning may facilitate greater inclusion, participation, and learning across a number of environments for

may facilitate greater inclusion, participation, and learning across a number of environments for individuals with ASD (Greer et al. 2006).

Conceptual analysis of observational learning: The four areas of observational learning are (1) engaging in a behavior already in the repertoire because of on observation of someone else receiving reinforcement for that behavior (i.e., watching someone do something you have done before and doing it because you see them receive reinforcement), (2) learning a new behavior as a product of watching someone else being taught a behavior (i.e., learning to do something new because you saw someone

someone else being taught a behavior (i.e., learning to do something new because you saw someone else receive reinforcement for doing something), (3) the acquisition of conditioned reinforcers through observation (i.e., learning to like new things because you saw someone else engaging with an item or activity), and (4) developing the skill of observational learning (Greer et al. 2006). One conceptual analysis which accounts for the emergence of observational learning is that of automatic

conceptual analysis which accounts for the emergence of observational learning is that of automatic reinforcement (Gladstone and Cooley 1979; Bruzek and Thompson 2007). Gladstone and Cooley (1979) described that simply doing the same thing you see someone else doing may itself function as a reinforcer for imitative and observational responses. This is important in understanding why children imitate behaviors that are not immediately reinforced. This type of reinforcement is discussed as

imitate behaviors that are not immediately reinforced. This type of reinforcement is discussed as intrinsic to the child (Bandura and Huston 1961) and imperative for a robust, independent repertoire of imitation and observation not facilitated by adults.

### Goals and Objectives  The goal of observational learning interventions is to teach individuals new skills or behavior through observation.

### Treatment Participants  Research on observational learning has evaluated its impact with typically developing children (Greer et al. 2006) and children and young adults with ASD (Taylor et al. 2012; MacDonald and Ahearn 2015). Research has also included individuals who have other types of disabilities such as developmental delay and chromosomal abnormalities (Rehfeldt et al. 2003; Werts et al. 1996), and Down syndrome (Griffen et al. 1992). Observational learning is an intervention that

al. 1996), and Down syndrome (Griffen et al. 1992). Observational learning is an intervention that benefits all people. For individuals with an ASD, observational learning is an effective intervention if the individual has the previously described prerequisite skills to learn in this manner.

### Treatment Procedures  The procedures of an observational learning intervention vary based on the environment, the model, and the skill being taught. As previously described, observational learning interventions all include the steps of (1) observing someone else perform a behavior, (2) observing the consequence for performing the behavior (i.e., reinforcement), and (3) performing the behavior (MacDonald and Ahearn 2015). Importantly, all procedures require that individuals have mastered a

(MacDonald and Ahearn 2015). Importantly, all procedures require that individuals have mastered a series of prerequisite skills (referenced previously) prior to implementation. If individuals do not have those skills in their repertoire, instruction around each of those skills must precede an observational learning intervention.

Developing the skill/process of observational learning: Research in the field of observational learning has evaluated interventions to teach the skills related to observational learning, as well as assess for an observational learning repertoire (Taylor et al. 2012; MacDonald and Ahearn 2015). Before teaching observational learning, a relevant skill deficit is identified. Next, a scenario involving someone modeling that skill would be created. Scenarios may be embedded into naturally occurring

someone modeling that skill would be created. Scenarios may be embedded into naturally occurring situations, such as during play time, or contrived, such as when a teacher recreates a situation that is often challenging for the individual (e.g., sharing a toy). Peers who perform the desired skill consistently may be used as a model. The individual then observes the model performing the skill and receiving reinforcement for that skill. Lastly, it is evaluated if the individual then engages in

receiving reinforcement for that skill. Lastly, it is evaluated if the individual then engages in that skill independently. Taylor et al. (2012) first assessed if three children with ASD could monitor their peers’ reading and subsequently acquire site words. Pre-assessment showed that observational learning did not occur when children with ASD watched their peers read site words and receive praise and tokens for reading. Once the children with ASD were taught to watch and repeat what their peers

and tokens for reading. Once the children with ASD were taught to watch and repeat what their peers said, a session was then conducted to again test for observational learning. The study showed that directly teaching observational skills increased monitoring responses in all participants with ASD, enhancing the observational learning repertoire. This subsequently resulted in increased accuracy of reading previously unknown words, after observing their peers read and receive reinforcement for

of reading previously unknown words, after observing their peers read and receive reinforcement for reading. In another example, MacDonald and Ahearn (2015) used several tasks to test whether an individual with an ASD demonstrated an observational learning repertoire. One task involved hiding a preferred food under a cup, something less preferred under a second cup, and nothing under a third cup. One person revealed what was under each cup, sampled the food, and commented (e.g., “Yummy!” or

One person revealed what was under each cup, sampled the food, and commented (e.g., “Yummy!” or “Ew, gross!”). In the case of the empty cup, the comment was, “There is nothing here.” The other person observing was then given an opportunity to interact with the three cups. If they chose the cup with a treat, this suggested that they demonstrated observational learning. Another task involved setting out toys, some working toys and some broken toys. One person interacted with the toys to show the

out toys, some working toys and some broken toys. One person interacted with the toys to show the other person which toys worked and which ones were broken. If the next person selected only the working toys, this suggested that they demonstrated observational learning.

Interventions involving observational learning: In addition to teaching direct skills related to observational learning, the literature in this area has demonstrated the efficacy of observational learning as an intervention across a variety of factors. Firstly, the types of models used during observational learning have varied. Models have included in vivo peer models (e.g., a child may watch another child say, “car” and then receive a toy car), video models (a child may watch a video of

another child say, “car” and then receive a toy car), video models (a child may watch a video of another child saying “car” and then receive a toy car), in vivo adult models (a child may watch an adult say “Hi” to another person and receive a hug), and even auditory stimuli (a child may hear on an audio recording an individual make a statement and receive praise for that statement; Werts et al. 1996). Secondly, research in this area has enhanced skill repertoires across a variety of domains.

1996). Secondly, research in this area has enhanced skill repertoires across a variety of domains. These include but are not limited to play skills (Bruzek and Thompson 2007), academic skills (Ramirez and Rehfeldt 2009), expressive language (Goldstein and Mousetis 1989), preference for items (Leaf et al. 2012; Singer-Dudek et al. 2011), and reading skills (Rehfeldt et al. 2003; Taylor et al. 2012). Bruzek and Thompson (2007) had young children watch their peers play. They found that simply

2012). Bruzek and Thompson (2007) had young children watch their peers play. They found that simply watching peers play with previously non-preferred items may establish non-preferred items as preferred for young children. The change in preference resulted in those children playing with novel or less preferred items or activities in subsequent play sessions. This application of observational learning provides a simple procedure to increase play skills and may additionally increase the

learning provides a simple procedure to increase play skills and may additionally increase the motivation to engage with new items or activities. In another example. Rehfeldt et al. (2003) employed an observational learning procedure with individuals with ASD and other developmental disabilities. The individuals first observed peers being taught picture names, site words, and matching. Next, they demonstrated the same skills without direct instruction. The study demonstrated the generality of

demonstrated the same skills without direct instruction. The study demonstrated the generality of observational learning procedures to academic skills. The authors concluded that observational learning opportunities may be an economical and efficient method for providing instruction to individuals with developmental disabilities. Greer and Singer-Dudek (2008) utilized an observational learning intervention to increase conditioned reinforcers for young children. In this study the researchers

intervention to increase conditioned reinforcers for young children. In this study the researchers evaluated if an item conditioned as a reinforcer through observation would effectively reinforce correct responses during academic instruction. Academic tasks included matching pictures and numbers, site word identification, and counting. Number of correct response across all participants increased, demonstrating the efficacy of observational learning procedures to condition items as reinforcers for

the efficacy of observational learning procedures to condition items as reinforcers for academic tasks. In an extension of this research, Singer-Dudek et al. (2011) were also able to establish books as reinforcers for children in a preschool through observational learning. Lastly, observational learning procedures have been implemented across a variety of environments and activities. Settings for these interventions have included but are not limited to, general education classrooms, homes,

for these interventions have included but are not limited to, general education classrooms, homes, individual work areas, and special education classrooms. Importantly, many of the interventions have involved educational settings.

Generality of observational learning: Observational learning has also helped to inform the validity of inclusive opportunities for individuals with ASD. We know from previous literature on best practice approaches to instruction for individuals with ASD that discrete trial instruction (DTI) is often the intervention of choice for establishing new skills (Smith 2001). Unfortunately, this type of intervention often fails to include the natural setting or ensure that individuals with ASD are

of intervention often fails to include the natural setting or ensure that individuals with ASD are learning from peers. One barrier to successful inclusion and instruction in the natural environment is the variability that may occur. This is no different for procedures which involve observational learning. Variability in a natural environment may involve the inconsistency of the model, the immediacy or consistency of adult prompting, or the schedule of reinforcement. To counter these types of

or consistency of adult prompting, or the schedule of reinforcement. To counter these types of variability, many observational learning interventions have occurred outside of the natural environment with peer confederates who are trained to engage in a series of responses at a consistent rate. An important study, conducted by Brody et al. (1978), demonstrated that intermittent modeling was as effective as consistent modeling in an observational situation. This study involved typically

as effective as consistent modeling in an observational situation. This study involved typically developing children who had previously mastered the skill of learning through observation. Specifically, the authors of this study found no significant difference in skills learnt when the model occurred in 50% of opportunities, versus 100% of opportunities. These data have important implications for the utility of observational learning interventions with individuals with ASD. Educational teams

the utility of observational learning interventions with individuals with ASD. Educational teams should ensure that learners have the necessary repertoires to learn through observation and subsequently measure that learning through observation is happening in controlled environments. Once an observational learning repertoire is established, learning through observation should lead to the development of new skills for individuals with ASD.

### Efficacy Information  The benefits of observational learning cannot be understated. At minimum, the benefits of observational learning to individuals with ASD include but are not limited to (1) reductions in adult directed instruction, (2) increased time with nondisabled peers, (3) increased learning opportunities, and (4) learning new skills (Werts et al. 1996).

### Outcome Measurement  Experimental studies have demonstrated that individuals with ASD who participated in an observational learning intervention developed new skills. Individuals with ASD who were taught the core skills of observational learning demonstrated a generalized observational repertoire across environments and skills. Importantly, observational learning interventions enhanced individual skill repertoires without direct instruction or reinforcement. The time to skill acquisition

skill repertoires without direct instruction or reinforcement. The time to skill acquisition varied across studies and interventions. Also, individual modifications were necessary for some participants to acquire skills. A common theme among previous research was that outcomes were dependent on each individual having prerequisite skills described above (e.g., delayed imitation, consequence discrimination). The effects of observational learning are measured through continuous or discontinuous

The effects of observational learning are measured through continuous or discontinuous data which describe the level of independent skills acquired. Additionally, the degree to which these skills generalize and maintain in the absence of observational opportunities are paramount for judging the outcome of observational learning interventions.

### Qualifications of Treatment Providers  Although formal qualifications are not required to implement observational learning, professionals implementing observational learning should have educational and practical experience in Applied Behavior Analysis, Psychology, or Education.

## Obsessive Desire for Sameness  ### Definition  Obsessive desire for sameness refers to an aspect of ritualistic and repetitive behaviors and patterns of interest observed in autism spectrum disorders (ASD). It is one criterion in diagnosing ASD and refers to the insistence that aspects of a person’s environment (involving items or even people) remain the same in appearance, sequence, or context. Obsessive desire for same-ness often results in a restricted range of activities, rigidity of

Obsessive desire for same-ness often results in a restricted range of activities, rigidity of behaviors, resistance to change, and insistence on performing idiosyncratic rituals and routines.

## Obsessive-Compulsive Disorder (OCD)  ### Short Description or Definition  Obsessive-Compulsive Disorder (OCD): OCD is an anxiety disorder that is defined by the presence of recurring worries (obsessions) and/or repetitive behavior (compulsions). Obsessions and compulsions often occur together, but not in all cases, and both are not required for the diagnosis. OCD is relatively common condition affecting 2–4% of adults, but less common in children. It appears to have a genetic component, but

affecting 2–4% of adults, but less common in children. It appears to have a genetic component, but environmental factors also likely play a role.

### Clinical Expression and Pathophysiology  The individual with OCD may describe intrusion of unwanted thoughts having to do with contamination, fears of harm coming to themselves or others in the family, and the strong urge to check possible sources of harm. In many such cases, the compulsive behavior that follows is related to the obsessional worry. For example, the patient who is fearful of contamination may become involved in excessive washing rituals. The patient who fears that harm may

contamination may become involved in excessive washing rituals. The patient who fears that harm may come to the self or to the family members may perform various checking behaviors to prevent that harm from occurring. In other cases, the link between the worry and behavior is less clear. For example, some patients may describe the need to carry out a repetitive ritual such as tapping or counting in order to prevent something bad from happening to themselves or others. In such cases, the

in order to prevent something bad from happening to themselves or others. In such cases, the ritualized behavior has no connection to the worry. In some cases, the compulsive behaviors are performed without a clear cognition. For example, some individuals will say that they would feel deeply uncomfortable or unsettled if they do not complete a given ritual. This may be the repetition of a routine activity such as opening and closing a door or setting down an object on the table where it will

activity such as opening and closing a door or setting down an object on the table where it will have to be repeated certain number of times in order to achieve a sense of completion. In such cases, there is a need to achieve a physical sense of completion rather than to prevent harm.

### Evaluation and Differential Diagnosis  There is interest in OCD because children and adults with autism often have repetitive behavior. The repetitive behavior in children and adults with autism, however, may not be the same as repetitive behavior in individuals with OCD. For example, children with autism may insist on reading the same book over and over again, or watching the same video over and over again. This is a preferred behavior – i.e., a behavior that the person wants to do. The

and over again. This is a preferred behavior – i.e., a behavior that the person wants to do. The difficulty for the child and family emerges when the family tries to move the child away from the preferred activity to accomplish activities of daily living. Thus, there is a common feature of repetitive behavior, but in OCD, the repetitive behavior is unwanted and often motivated by the urge to prevent harm.

### Treatment  Another potential difference in a repetitive behavior in OCD and the repetitive behavior in autism relates to the issue of anxiety. In individuals with OCD, the compulsive behavior is in fact being performed in order to reduce anxiety. That anxiety could come from fears of harm or contamination or other sources. As the anxiety about this fear increases, the compulsive behavior is performed and anxiety declines. The reduction in anxiety is powerful reinforcement for repeating the

and anxiety declines. The reduction in anxiety is powerful reinforcement for repeating the behavior. By contrast, anxiety reduction does not appear to be the driving force for repetitive behavior in children and adults with autism – though this possibility warrants careful assessment. This question about the similarity or difference in repetitive behavior in autism versus OCD has implications for treatment. The SSRIs are commonly used for the treatment of OCD and are generally regarded as

for treatment. The SSRIs are commonly used for the treatment of OCD and are generally regarded as effective for the treatment of OCD. The use of SSRIs for the treatment of repetitive behavior in children with autism spectrum disorders has been disappointing. Two studies have shown that the SSRIs are not effective in reducing repetitive behavior in children and adolescents with autism spectrum disorders. In one study, 149 children with autism spectrum disorders and moderate levels of repetitive

In one study, 149 children with autism spectrum disorders and moderate levels of repetitive behavior were treated with citalopram or placebo for 12 weeks. After 12 weeks of treatment, there was no difference in the overall improvement in those on citalopram versus those on placebo. In addition, in measures of a repetitive behavior, there was no difference between citalopram and placebo groups. Another study involving 158 children with a new formulation of fluoxetine was also negative with no

Another study involving 158 children with a new formulation of fluoxetine was also negative with no difference on a measure of repetitive behavior between fluoxetine and placebo.

## Obstetrical Complications/Risk Factors  ### Definition  A range of factors can increase the risk to the developing fetus during pregnancy and at the time of birth. These range from genetic abnormalities in the fetus, complications for the mother in carrying the child to term, and various environmental factors in utero – for example, exposure to alcohol. Although much interest has centered on possible issues of obstetrical risk in autism and although such factors can clearly impact on

on possible issues of obstetrical risk in autism and although such factors can clearly impact on development of the child, data for children with autism have been somewhat lacking and/or difficult to interpret.

### Historical Background  Kanner (1943) suggested that autism is a congenital condition. Recent work has confirmed a very strong genetic basis for autism while leaving open the possibility for the operation of nongenetic factors to some, although relatively to a much smaller, degree (Rutter 2005; Wing and Potter 2002). The early literature on this topic was reviewed by Tsai (1987) and others (e.g., Bryson et al. 1988; Levy et al. 1988; Lanzi et al. 1991; Levy 1991), with conflicting findings.

Bryson et al. 1988; Levy et al. 1988; Lanzi et al. 1991; Levy 1991), with conflicting findings. Various difficulties in comparing studies were noted – these related to differences in approach and sample, comparison groups, and so forth. Issues of birth order are also important since obstetric complications differ in frequency based on birth order (this effect may reflect the issue of “stoppage rules” in autism (see Jones and Szatmari 1988)) and are more frequent among first-, fourth-, and later-born

in autism (see Jones and Szatmari 1988)) and are more frequent among first-, fourth-, and later-born offspring in a sibship (Bakan 1971; Thomson and Barron 1983). A further complication is posed by the fact that obstetrical problems might reflect the underlying genetic abnormality associated with autism, that is, they are best viewed as a consequence rather than a cause; this notion is supported by work that suggests that associations of obstetrical abnormalities and autism are weaker once

by work that suggests that associations of obstetrical abnormalities and autism are weaker once adjustment is made for party (Lord et al. 1991). So, for example, individuals with Down syndrome are more likely to have birth complications (Bolton et al. 1994).

### Current Knowledge  The numerous possible alternative explanations for a relationship between autism and obstetrical complications have various implications. As noted by Bolton et al. (1997), each of the various hypotheses leads to various predictions. In their 1997 study, Bolton and colleagues evaluated obstetrical risks in families with a child with autism and families with a child with Down syndrome. Both groups had elevated obstetrical risk compared to unaffected siblings. Various

Down syndrome. Both groups had elevated obstetrical risk compared to unaffected siblings. Various factors have been associated with autism risk, but to date none has been sufficiently large in terms of effect to implicate a single factor in the pathogenesis of autism. In their 2011 meta-analysis, Gardener and colleagues reviewed over 60 perinatal and neonatal factors in data drawn from 40 studies. A number of factors that increased autism were identified (e.g., abnormal presentation, low birth

A number of factors that increased autism were identified (e.g., abnormal presentation, low birth weight, and birth injury, among others), but the authors concluded that there was insufficient evidence to implicate any one specific risk factor. Clearly a complication is the substantial methodological variation over the available studies.

### Future Directions  As genes and possible brain mechanisms are identified, it may be possible to do a more thorough and hypothesis-guided examination of pre-, peri-, and neonatal risk factors in autism. At present, the influence of genetic factors appears to be strongly predominant.

## Obstipation  Constipation  ## Occipital Lobe  ### Synonyms  Occipital lobes; Visual cortex  ### Definition  The occipital lobes are positioned at the back region of the cerebral cortex. The name “occipital” derives from the overlying occipital bone, which is named from the Latin occiput, or “back of the head.” Functionally, these regions of the cerebral cortex are the main centers for visual processing. For example, this area contains the primary visual cortex as well as an array of other,

processing. For example, this area contains the primary visual cortex as well as an array of other, nearby visual regions specialized for different visual tasks, such as visuospatial processing, color discrimination, and motion perception.

## Occipital Lobes  Occipital Lobe  ## Occupational Therapy (OT)  ### Definition  #### Definition of Occupation  The term “occupation” is of special significance in the profession of occupational therapy. Occupations are those activities that surround us and occur at various times in our lives. The founders of the profession used the term “occupation” to denote the proper use of time including work, leisure, and self-care behaviors (Meyer 1922/1977). Occupations are those activities that are

work, leisure, and self-care behaviors (Meyer 1922/1977). Occupations are those activities that are grouped together by a culture according to their purpose. These occupations may hold special sig-nificance or may seem ordinary. For example, the occupation of eating may seem to be an ordinary everyday occurrence, but during special holidays or events, the foods and accompanying environmental situations create a special significance and meaning. Even the everyday occupation of eating a meal may be

create a special significance and meaning. Even the everyday occupation of eating a meal may be disrupted when a child has severely limited acceptance of foods or rejects sitting at a table. In this situation, the seemingly ordinary occupation of eating a meal can become challenging. The term occupation serves as the core of the profession of occupational therapy and forms the perspective focused on health, well-being, and participation in those activities that are part of the culture

focused on health, well-being, and participation in those activities that are part of the culture (Kielhofner and Burke 1977). Occupations have been identified and classified into groups as follows (American Occupational Therapy Association [AOTA] 2008):

*   Activities of Daily Living (ADLs): care of oneself including bathing, bowel and bladder management, toilet hygiene, dressing, eating including swallowing, self-feeding, functional mobility, sexual activity, personal hygiene, and grooming.

*   Instrumental Activities of Daily Living (IADLs): activities seen in the care of home and community including care of others whether parents, siblings or children, care of pets, communication management by using equipment effectively, community mobility using both public and private transportation, financial management, health management and maintenance, home establishment and management, meal preparation and clean-up, safety and emergency maintenance, religious observance, and shopping.

*   Rest and Sleep: these occupations include rest, sleep, and sleep preparation and participation and address the need to establish appropriate habits and routines for rest and sleep.
*   Education: this occupation includes both for-mal educational participation and informal personal educational pursuits and participation.

*   Work: includes activities related to both employment and volunteer work and includes employment interests and pursuits, employ-ment seeking and acquisition skills, job performance, retirement preparation and adjustment, and volunteer exploration and participation.

*   Play: includes play exploration and participation in various forms. *   Leisure: includes leisure exploration and participation in various forms. *   Social Participation: these occupations are “organized patterns of behavior that are characteristic and expected of an individual or a given position within a social system” (Mosey 1996, p. 340) and include participation at various levels such as the community, family, and with peers/friends.

These occupations are addressed within the profession of occupational therapy and serve as the foundation for practice. The complexity of occupations has been further studied in the field of occupational science.

#### Occupational Therapy  Occupational therapy is a client-centered profession frequently referred to as the “art and science of helping people do the day-to-day activities that are important and meaningful to their health and well-being through engagement in valued occupations” (Crepeau et al. 2009, p. 217). The important characteristic of this profession is the collaboration with the client in the engagement in occupations. This profession includes three key elements of being

the client in the engagement in occupations. This profession includes three key elements of being client-centered, occupation-centered, and evidence-based.

The concept of being client-centered within the profession of occupational therapy recognizes the need for the client to be a collaborative member in the therapeutic process. This can assume many forms. A child may want to learn to play a video game where the family is concerned about that same child’s ability to interact with peers. The occupational therapy practitioner, using a client-centered approach, would incorporate both the use of video games and peer interaction to meet the client

approach, would incorporate both the use of video games and peer interaction to meet the client needs. In this situation, the client is not singularly the child but the child positioned within a family and society. Client-centered intervention can be used to meet the needs of individuals, organizations, and populations (AOTA 2008). Although most often client-centered is thought of in reference to a single individual, the profession of occupation therapy identifies the client from a broader

to a single individual, the profession of occupation therapy identifies the client from a broader perspective and services may be used to support organizations such as a school district where occupational therapy is provided to foster stress management through sensory strategies and sensory breaks for all children. Entire populations may also benefit from occupational therapy services such as addressing the occupational needs of homeless children.

The profession of occupational therapy is clearly linked with occupation-centered practice (Crepeau et al. 2009). The focus of intervention on helping a client become successful with day-to-day activities is the hallmark of occupational therapy. This is illustrated when an occupational therapist is working with a child to master brushing teeth or use of utensils during a meal. Within a school setting, this same child may benefit from occupational therapy services focused on peer interaction on

this same child may benefit from occupational therapy services focused on peer interaction on the playground or in the classroom when this child is expected to complete a written assignment.

The profession, from its very beginnings, has sought to provide evidence of the effectiveness of intervention focused on engagement in occupations. To practice evidence-based occupational therapy requires the practitioner to examine three factors (Crepeau et al. 2009). First, the occupational therapy practitioner must know how to “access, evaluate, and interpret relevant research” (p. 219). This requires knowledge of current publications and the type of research literature available. The

This requires knowledge of current publications and the type of research literature available. The second element the occupational therapist must address is the collection of appropriate data to support recommended interventions. The final factor within evidence-based occupational therapy requires the practitioner to disseminate this information to the client, so the client can make an informed decision regarding the recommended intervention.

The focus of occupational therapy intervention is not merely on addressing client deficits, although that is within the practice of the profession. Occupational therapy intervention has identified five approaches as follows (AOTA 2008; Dunn et al. 1998):

*   Create/promote (health promotion): a disability is not assumed, and intervention is designed to provide an enriched experience, an example can be seen in health promotion activities for adults or children to develop healthy habits for leisure and play.

*   Establish, restore, or remediate: intervention is focused on developing the skills or abilities needed for participation in occupations; examples can be seen when an occupational therapist helps a child develop the skills needed to play with peers or when an occupational therapist helps a child develop the motor memory needed for handwriting.

*   Maintain: this intervention is designed to preserve client capacities to engage in occupations and is provided to avoid a decline in functional abilities; an example can be seen when an occupational therapist provides organizers for a child’s backpack at the beginning of each school year.

*   Modify, compensate, or adapt: this intervention is designed to change the environment, situation, or setting to allow the client to participate in the occupation; examples can be seen when an occupational therapist suggests use of voice-activated software for a student who has difficulties completing written assignments or the use of a seating cushion for a child who needs movement within a classroom setting.

*   Prevent/disability prevention: this approach is designed to prevent problems, and examples can be seen when an occupational therapist provides soft-cushioned pencil grips to the entire classroom of children before they begin to write or the use of a slant board in classrooms to help children assume an upright posture during written assignments.

These forms of occupational therapy intervention reflect the diversity of services provided. The profession has a wealth of knowledge that extends beyond working only on a specified disabling condition and includes a wide range of clients with occupational needs.

### Historical Background  #### History  Occupational therapy as a profession started in 1917, but the foundations for this profession dedicated to occupational engagement were established far earlier than that date. Prior to the 1800s, individuals who displayed mental health disorders were treated with approaches meant to control their behavior instead of treat the behavior. Those with mental health problems were viewed as dangerous and incurable. The use of purgatives, emetics, beatings, and

problems were viewed as dangerous and incurable. The use of purgatives, emetics, beatings, and bloodletting was used to weaken the individual displaying unacceptable behaviors. With the advent of moral treatment in the beginning of the nineteenth century, those who displayed mental health problems were viewed as needing humane intervention instead of punishment. Asylums were established to provide treatment for those with mental health problems and the value of engaging in occupations was

treatment for those with mental health problems and the value of engaging in occupations was established. The treatment for those with mental health disorders often included engagement in various occupations such as gardening, sewing, or working in a shop.

The formal beginning of the profession of occupational therapy occurred in Clifton Springs, New York, USA, on March 17, 1917, with the foundation of the National Society for the Promotion of Occupational Therapy (NSPOT). This society was formed by individuals from varied professional backgrounds, reflecting the complexity of occupational therapy. A psychiatrist, William Dutton, considered the father of the profession, and Eleanor Clark Slagle, a welfare worker, considered the mother of the

father of the profession, and Eleanor Clark Slagle, a welfare worker, considered the mother of the profession, along with architects, nurses, and teachers established the society. Adolf Meyer, a psychobiologist, was instrumental during the initial formation of the profession and published “The Philosophy of Occupational Therapy” in 1922, describing the need for occupational engagement with an understanding of the role of time and temporality as part of the profession. The use of habit training

of the role of time and temporality as part of the profession. The use of habit training was a core element to the profession of occupational therapy and addressed the temporality described by Meyer. Another core element of the profession is energy conservation. One of the founding members of the NSPOT was an architect by the name of George Barton. He was a leading proponent of “efficiency techniques” and was instrumental in having the concepts of efficiency techniques included in the profession.

World War I (WWI) brought about an expansion in the profession of occupational therapy. Initially formed to provide intervention for those who had mental health problems, the needs of injured soldiers from WWI pressed the profession to develop quickly. The United States (US) military sought the assistance from NSPOT to recruit and train 1,200 “reconstruction aides” to meet the needs of wounded and injured soldiers including those suffering from “shell shock.” The efforts of NSPOT and the

and injured soldiers including those suffering from “shell shock.” The efforts of NSPOT and the reconstruction aides were praised by the US Surgeon General’s office for their service to WWI veterans. In Canada, a similar growth in the need for occupational therapists was seen during WWI. They were identified as “ward aides” or “occupation aides” in Canada and served returning veterans.

Following WWI, the profession of occupational therapy established training standards and criteria for practitioners of occupational therapy in the USA. In 1921, the NSPOT changed its name to the American Occupational Therapy Association (AOTA) and in 1931 created the first national registry of qualified occupational therapy practitioners. The profession continued to advance and refine its training but more slowly during the Great Depression. With the beginning of World War II (WWII), the

but more slowly during the Great Depression. With the beginning of World War II (WWII), the profession of occupational therapy saw a dramatic increased demand for trained professions and the number of educational programs expanded. From 1941 to 1946, the number of trained occupational therapy professionals in the USA doubled to meet the needs of WWII veterans. Canada experienced similar increased demand, and Canadian occupational therapists were recruited to serve in Britain to meet the needs

demand, and Canadian occupational therapists were recruited to serve in Britain to meet the needs of veterans. The educational training of occupational therapists expanded to include activities of daily living in addition to the use of therapeutic activities.

#### Global Occupational Therapy  The profession of occupational therapy continued to expand, and in 1952, the World Federation of Occupational Therapy (WFOT) was formed. Representatives from the USA, Canada, England, Scotland, South Africa, Sweden, New Zealand, Australia, Israel, India, and Denmark initiated the organization. WFOT was admitted into official relations with the World Health Organization (WHO) in 1959 and was recognized as a non-governmental organization (NGO) by the United

(WHO) in 1959 and was recognized as a non-governmental organization (NGO) by the United Nations (UN) in 1963. The purpose of this organization is to act as the international organization for the promotion of the profession. Included in WFOT’s initial objectives was the education and training of occupational therapists with the advancement of standards of practice. There are currently 57 member organizations of WFOT.

### Current Knowledge  #### Educational Requirements for Occupational Therapy Practitioners  The education of an occupational therapy practitioner includes coursework in the psychological, psychosocial, medical, biological, social behavioral, and occupational sciences. Within the USA, there are two levels of occupational therapy practitioners, the occupational therapist and an occupational therapy assistant. The entry-level occupational therapist is educated at the minimum with a master’s

assistant. The entry-level occupational therapist is educated at the minimum with a master’s degree of 5–6 years of college with thorough preparation in occupational therapy theory and practice, research, internships, and successful passing of the national registry examination. The completion of the master’s degree is not sufficient to practice occupational therapy. The occupational therapy postbaccalaureate graduate must also pass the rigorous national registry examination to be allowed to

graduate must also pass the rigorous national registry examination to be allowed to practice as an occupational therapist. Once a graduate has passed this exam, the designation of Occupational Therapist, Registered (OTR) can be used. Most states within the USA also require licensure, and the designation of OTR/L is frequently used to designate a practitioner who is registered and licensed to practice occupational therapy.

The training at the assistant level is typically completed within a 2-year period of college work in the areas of psychological, psychosocial, medical, biological, social behavioral, and occupational sciences. The student pursuing an occupational therapy assistant degree must also complete coursework in occupational therapy practice and internships prior to sitting for the national certification examination. A graduate from an occupational therapy assistant program who has successfully

examination. A graduate from an occupational therapy assistant program who has successfully completed the national examination is eligible to use the designation of Certified Occupational Therapy Assistant (COTA).

There are several programs within the USA that offer entry-level occupational therapy degrees at the doctoral level using the designation of Occupational Therapy Doctorate (OTD). Student enrolled in OTD program must also complete a course of study that includes psychological, psychosocial, medical, biological, social behavioral, and occupational sciences. A thorough preparation in occupational therapy theory and practice, research, internships, and successful passing of the national registry

therapy theory and practice, research, internships, and successful passing of the national registry examination is included in this course of study over 6–7 years of college. The OTD program often allows further study in a specific area of occupational therapy or occupational science, but the graduate with an entry-level OTD degree is still required to complete internships and successfully pass the national registration examination before being able to practice as an occupational therapist.

Advanced degrees in occupational therapy are also offered at the OTD level where the practitioner has already completed the entry-level requirements and is seeking an advanced degree. The field of occupational science, the science involved with the study of occupations, includes PhD preparation to further the knowledge of occupations.

### Conclusion  The profession of occupational therapy continues to change to meet the occupational needs of clients worldwide. In the USA, the profession of occupational therapy will reach its 100-year mark in 2017 and the Centennial Vision of AOTA articulates this concept of meeting the occupational needs of all clients: We envision that occupational therapy is a powerful, widely recognized, science-driven, and evidence-based profession with a globally connected and diverse workforce meeting

and evidence-based profession with a globally connected and diverse workforce meeting society’s occupational needs. (AOTA 2006).

## Oculoauriculovertebral (OAV) Spectrum or Dysplasia  Goldenhar Syndrome  ## Office of Rehabilitation  Department of Vocational Rehabilitation  ## Olanzapine  ### Definition  Olanzapine is a second-generation antipsychotic (SGA) with a greater 5HT2A/D2 dopamine receptor antagonist ratio as compared to a first-generation antipsychotic (FGA). As such, SGAs are purported to have a more benign side-effect profile, with a lower risk for causing extrapyramidal side effects (EPS) and tardive

side-effect profile, with a lower risk for causing extrapyramidal side effects (EPS) and tardive dyskinesia associated with long-term exposure.

### Historical Background  Olanzapine is an SGA originally introduced for use in adults with psychosis. It is structurally similar to clozapine but without the propensity toward agranulocytosis, has relatively lower rates of anticholinergic side effects, and has lower risk for drug interactions. When compared to FGAs, olanzapine offers a lower risk of EPS. Based on the promising clinical findings in adults, investigators became interested in olanzapine’s effects in youth. Studies have emerged

in adults, investigators became interested in olanzapine’s effects in youth. Studies have emerged evaluating the efficacy and tolerability of olanzapine in children and adolescents. One study of adolescents with bipolar mania, randomized to either olanzapine or placebo, demonstrated significantly improved response and remission criteria in the treatment group (Tohen et al. 2007). A schizophrenia study of adolescents randomized to olanzapine demonstrated improvement in all primary outcome measures

of adolescents randomized to olanzapine demonstrated improvement in all primary outcome measures including the Clinical Global Impression Scale-Severity of Illness, Brief Psychiatric Rating Scale for Children, and Positive and Negative Syndrome Scale (PANSS) compared with placebo (Kryzhanovskaya et al. 2009). In the Treatment of Early Onset Schizophrenia Spectrum Disorders Study (TEOSS), patients were randomized to olanzapine, risperidone, molindone, or placebo with no significant differences in

were randomized to olanzapine, risperidone, molindone, or placebo with no significant differences in response rates between active treatment groups (Sikich et al. 2008). What was consistent among the three randomized studies was the olanzapine arms consistently demonstrated statistically significant weight gain and changes in metabolic indices. In TEOSS, olanzapine was discontinued when interim data showed a greater increase in weight than with either risperidone or molindone without greater

data showed a greater increase in weight than with either risperidone or molindone without greater efficacy. An open-label study of five hospitalized preadolescent children, administered with olanzapine for bipolar disorder, psychosis NOS, schizophrenia, and ADHD, demonstrated either adverse effects or lack of clinically significant therapeutic responses leading to its being discontinued in all patients (Krishnamoorthy and King 1998). It is due to these findings that olanzapine is largely

all patients (Krishnamoorthy and King 1998). It is due to these findings that olanzapine is largely administered as a second-line or third-line treatment for schizophrenia in pediatric patients.

There is a dearth of data on prescribing rates of olanzapine in children and adolescents, but Constantine and Tandon describe changing trends in antipsychotic use in Florida (Constantine and Tandon 2008). They refer to the conclusions of both the Consensus Statement of the American Diabetes and the American Psychiatric Associations in February of 2004, including olanzapine and clozapine being associated with the greatest risk of weight gain, diabetes, and dyslipidemia (American Diabetes

associated with the greatest risk of weight gain, diabetes, and dyslipidemia (American Diabetes Association et al. 2004). By December of 2005, olanzapine was the least pre-scribed SGA in pediatric patients in Florida’s Medicaid program. In another study of privately insured children, risperidone accounted for 74.3% of antipsychotic prescriptions, followed by aripiprazole (13.9%), and ziprasidone and paliperidone both prescribed in less than 1% of cases (Olfson et al. 2010). While the Food and

and paliperidone both prescribed in less than 1% of cases (Olfson et al. 2010). While the Food and Drug Administration has approved risperidone and aripiprazole for the treatment of symptoms associated with autism, other medications are often used “off-label” to target problem behaviors. Haloperidol has been demonstrated in placebo-controlled studies to be effective in treating these behaviors in children and adolescents (Anderson et al. 1984; Campbell et al. 1978; Cohen et al. 1980; Naruse et

children and adolescents (Anderson et al. 1984; Campbell et al. 1978; Cohen et al. 1980; Naruse et al. 1982). Its use is now limited due to the incidence of side effects including sedation, EPS, and tardive dyskinesias (Campbell et al. 1978, 1997). Therefore, SGAs have largely replaced FGAs to improve disruptive behaviors associated with ASDs (Hollander et al. 2006; McCracken et al. 2002). In 1997, the National Institute of Mental Health funded five university-affiliated medical centers with

1997, the National Institute of Mental Health funded five university-affiliated medical centers with expertise in the treatment of autism to constitute the Research Units on Pediatric Psychopharmacology (RUPP) autism network (King and Bostic 2006; McDougle et al. 2008). Because of a number of case reports describing the potential benefit of risperidone in children with autism and other developmental disabilities, the RUPP network selected risperidone for a multicenter trial and found that it

disabilities, the RUPP network selected risperidone for a multicenter trial and found that it improved aggression, hyperactivity, and irritability over 8 weeks (King and Bostic 2006; McCracken et al. 2002). Since the initial RUPP risperidone trial, there have been a number of other randomized, double-blind, placebo-controlled trials evaluating risperidone, but much less research has focused on olanzapine in children with ASD (Nagaraj et al. 2006; Shea et al. 2004).

### Current Knowledge  Several case reports have been published regarding olanzapine use in children with ASD. In one case, a 10-year-old boy with bipolar disorder, autism, and mental retardation was switched from thioridazine and fenfluramine to olanzapine and lithium and demonstrated a decrease in both aggression and repetitive behaviors (Horrigan et al. 1997). An 8-year-old boy with autism and hyperactivity and disruptive behaviors who had failed multiple drug trials was given a trial of

and hyperactivity and disruptive behaviors who had failed multiple drug trials was given a trial of olanzapine which reportedly decreased his hyperactivity and resolved his aggression (Malek-Ahmadi and Simonds 1998). London reported a case of olanzapine-induced mania in a child with PDD (London 1998).

In an initial open-label pilot study examining safety and tolerability of olanzapine in children, adolescents, and adults with PDDs (Potenza et al. 1999), eight patients were given treatment over 12 weeks. The mean dose at the end of the study was 7.8 mg/day. Seven patients completed the study, and six were considered either “much improved” or “very much improved” on the Clinical Global Impression-Improvement Scale or CGI-I (p<0.001). The Vineland Adaptive Behavior Scale and Maladaptive

Scale or CGI-I (p<0.001). The Vineland Adaptive Behavior Scale and Maladaptive Behavior Subscales (VMBS) captured significant improvements from baseline in temper tantrums, impulsivity, anxiety, and social withdrawal (p<0.001). Rocking, property destruction, and inappropriate sexual behavior were also significantly decreased after olanzapine (p<0.005). Significant weight gain was seen in six of the eight patients during the 12-week trial (p = 0.008). There were no cases of EPS.

In an open-label 6-week study, 12 children (mean age 7.8 years) with ASD were randomized to either olanzapine or haloperidol (Malone et al. 2001). The mean doses for haloperidol were 1.4 mg/day and 7.9 mg/day of olanzapine. The primary outcome measure was the CGI scale, with a secondary outcome based on the Children’s Psychiatric Rating Scale (CPRS). Five of the six subjects in the olanzapine group were considered responders on the CGI, either “much improved” or “very much improved,” compared

were considered responders on the CGI, either “much improved” or “very much improved,” compared to three of the six in the haloperidol group. There was no statistically significant difference between groups. The CPRS autism factor assesses for social withdrawal, rhythmic motion/stereotypy, abnormal object relations, underproductive speech, and unspontaneous relation to the examiner. For the CPRS autism factor, both groups demonstrated significance in improvement from baseline to endpoint (p =

autism factor, both groups demonstrated significance in improvement from baseline to endpoint (p = 0.0008). Only the olanzapine group demonstrated significance in decreasing the anger/uncooperativeness and hyperactivity CPRS factors. The most common side effects included time-limited sedation and weight gain. All but one child taking haloperidol gained weight, and the olanzapine group demonstrated significantly more weight gain than the haloperidol group (p<0.04). All six olanzapine children

significantly more weight gain than the haloperidol group (p<0.04). All six olanzapine children gained over 5 lb., compared with two in the comparator group. There was no EPS in the olanzapine group. The authors concluded that olanzapine appeared to be a safe alternative to haloperidol for short-term treatment of behavior symptoms in PDD.

A 3-month open-label study was performed in order to assess the effect of olanzapine on communication in children with PDD (Kemner et al. 2002). Twenty-five children between the ages of 6–16 (mean = 11.2) years with either a diagnosis of autism or PDD NOS were followed and evaluated. The mean maximum dose at the end of the study was 10.7 mg/day. Psychometric measures included the CGI, Aberrant Behavior Checklist, and TARGET (a clinician-generated checklist consisting of five target symptoms

Behavior Checklist, and TARGET (a clinician-generated checklist consisting of five target symptoms chosen by parents). Communication skills were assessed in children with fluent speech (n = 20) via behavioral analyses of a playroom session. The results of this study showed significant improvements on TARGET and three subscales of the Aberrant Behavior Checklist for irritability, hyperactivity, and inappropriate speech. Based on CGI-I, only three children could be considered responders. Twelve

inappropriate speech. Based on CGI-I, only three children could be considered responders. Twelve children were considered significantly less ill after olanzapine based on the CGI-severity score. These results did not replicate previous studies demonstrating much or very much improvement on CGI-I after treatment with olanzapine where the majority of children showed minor improvement. Adverse events included

weight gain (average 4.7 kg), increased appetite, and decreased strength, and three children developed EPS that resolved after lowering the dose of olanzapine. A case series looking at the long-term effects of olanzapine was performed by Stavrakaki, Antochi, and Emery (2004). Seven subjects (ages 8–52) with PDD were monitored over 17 months for improvements in the CGI scale and Global Assessment of Function (GAF). Five of the seven had diagnoses of autism and two with PDD NOS. The mean dose of

of Function (GAF). Five of the seven had diagnoses of autism and two with PDD NOS. The mean dose of olanzapine was 7.1 mg/day. In this series, only two of the cases were children. The two boys were also on additional medication: risperidone, methylphenidate, and clonidine in an 8-year-old and dextroamphetamine in an 11-year-old. There was a significant increase in GAF scores from 37.7 pretreatment to 70.7 at end of study (p<0.0001). By week 52, one subject had “improved,” three subjects were

to 70.7 at end of study (p<0.0001). By week 52, one subject had “improved,” three subjects were “much improved,” and three other subjects were “very much improved,” making six responders. The most common side effect was sedation, and one patient had a seizure not considered attributable to olanzapine. Interestingly, there was no significant weight gain (p ¼ 0.97), but the authors note that subjects were monitored closely and treated with dietary and behavioral interventions which may have

were monitored closely and treated with dietary and behavioral interventions which may have accounted for this finding. The first and only randomized, double-blind, placebo-controlled study of olanzapine in PDD was an 8-week study conducted by Hollander et al. (2006). Six of 11 children (ages 6–14 years) were diagnosed with autism. Dosages of olanzapine were based on weight and ranged from 7.5 to 12.5 mg/day. The primary outcome measure was the clinician-rated CGI-I score at 8 weeks, and

7.5 to 12.5 mg/day. The primary outcome measure was the clinician-rated CGI-I score at 8 weeks, and secondary outcome measures included the compulsion subscale of the Children’s Yale-Brown Obsessive Compulsive Scale (CY-BOCS) and the Overt Aggression Scale-Modified (OAS-M) irritability and aggression subscales. There was a nonsignificant improvement in the primary outcome of the treatment group averaging 4.0–2.25 (+/ 1.26) versus the control group 4.0–3.5 (+/ 1.0). Three of the six in the

averaging 4.0–2.25 (+/ 1.26) versus the control group 4.0–3.5 (+/ 1.0). Three of the six in the treatment group were responders, and one out of five placebo subjects was a responder (50% vs. 20%). There were no significant changes noted on other outcome measures for irritability or aggression. The subjects receiving olanzapine gained more weight than controls, averaging 7.5 lbs. versus 1.5 lbs. in the control group. Four of the six olanzapine-treated subjects (66.6%) had more than 7% weight

in the control group. Four of the six olanzapine-treated subjects (66.6%) had more than 7% weight gain compared to one of five control subjects (20%). Weight gain and sedation were the most common side effects in the treatment group. There were no reported extrapyramidal symptoms associated with olanzapine.

Children have been shown to be more susceptible than adults to the side effects of FGAs and SGAs (Sikich et al. 2004). In a randomized controlled trial of 40 youth with psychotic disorders, haloperidol, risperidone, and olanzapine were compared. EPS was found in 67% of the haloperidol arm versus 56% and 53% of the risperidone and olanzapine arms, respectively. Those on haloperidol reported more severe EPS. Despite the greater risk of side effects, antipsychotics are increasingly being used in

severe EPS. Despite the greater risk of side effects, antipsychotics are increasingly being used in children and adolescents (Olfson et al. 2006). In regard to long-term side effects, a meta-analysis by Correll and Kane looked at the use of SGAs for various psychotic and nonpsychotic diagnoses, including ASD. Ten studies were evaluated to assess the 1-year risk of tardive dyskinesia (TD) in children under 18 years old. There were 783 youth who received risperidone (n¼ 737), quetiapine (n ¼ 27),

under 18 years old. There were 783 youth who received risperidone (n¼ 737), quetiapine (n ¼ 27), or olanzapine (n ¼ 19). Of these, after 3 years of treatment, there were three new cases of TD diagnosed. One-year TD rates are relatively low (annualized rate 0.42%), but the data was limited for SGAs other than risperidone, and many children are treated with higher doses of SGAs for longer durations which may lead to a greater TD risk not demonstrated in this study (Correll and Kane 2007).

Future Directions With only a limited amount of data available regarding the use of olanzapine in the treatment of ASD, its use remains primarily empirical. On the other hand, there is extensive data concerning children with other psychiatric disorders treated with olanzapine that warrants concern about side effects, specifically metabolic effects and weight gain. In the Sikich study, subjects in all treatment arms gained significant weight above normal growth, but olanzapine was the highest,

in all treatment arms gained significant weight above normal growth, but olanzapine was the highest, followed by risperidone, then haloperidol (Sikich et al. 2004). It remains crucial to continue reviewing emerging data regarding SGAs and their associated risks, particularly weight gain. At this time, given the state of the evidence, alternative SGAs should be considered prior to olanzapine for children with autism spectrum disorders given the chronicity of the disease and prolonged need for

children with autism spectrum disorders given the chronicity of the disease and prolonged need for antipsychotic medications.

Omission Training Omission training is a behavior-analytic term that refers to a form of punishment in which an event is withdrawn contingent on the occurrence of a target behavior (e.g., property destruction, aggression toward other people). In the behavior-analytic literature, omission training typically is considered to be negative or Type II punishment. Everyday examples of omission training include loss of privileges (e.g., having to leave the zoo early contingent on hitting your mom,

include loss of privileges (e.g., having to leave the zoo early contingent on hitting your mom, loss of one’s driver’s license for getting too many speeding tickets). Time-out and response cost are the two most commonly used forms of omission training. Time-out is the removal of a positive event contingent on the occurrence of a challenging behavior. Response-cost is the removal of a specified amount of a positive reinforcer contingent on the occurrence of a challenging behavior (see ▶“Time-out”

of a positive reinforcer contingent on the occurrence of a challenging behavior (see ▶“Time-out” and ▶“Response Cost” entries for additional details).

Onset In his original report of the autistic syndrome, Kanner speculated that the condition he described was congenital, i.e., that the children were born with it (Kanner 1943). Parental report of age of onset was one of the major significant variables noted to separate childhood autism from other forms of severe disturbance – notably childhood schizophrenia (Kolvin 1971; Rutter 1972). Early onset was also a feature included in some of the first more operationalized definitions of the disorder

was also a feature included in some of the first more operationalized definitions of the disorder (e.g., American Psychiatric Association [APA] 1980; Rutter 1972). Subsequent work has generally supported the notion that autism is an early-onset disorder present at birth or becoming apparent in the first year of life. Although the term onset is typically used, in fact recognition is a more appropriate term since various factors might complicate recognition of the disorder, e.g., parental

appropriate term since various factors might complicate recognition of the disorder, e.g., parental sophistication, education, denial, and so forth (Chawarska et al. 2007; Volkmar et al. 1985). A small body of work has begun to focus on direction observation, e.g., of high-risk samples followed over time, home videotapes, and so forth, and these frequently suggest that subtler difficulties may precede the more obvious ones that can give rise to parental concern (Chawarska et al. 2007; Osterling

the more obvious ones that can give rise to parental concern (Chawarska et al. 2007; Osterling and Dawson 1994; Werner and Dawson 2005; Werner et al. 2000). Most studies reliant on parent report suggest that parents are typically worried in the first or second year of life about their child’s development. For example, Short and Schopler (1988) examined reported age of onset in a large group of cases at Division TEACCH and noted that in 76% of cases, parents were worried by age 2. In the DSM-IV

at Division TEACCH and noted that in 76% of cases, parents were worried by age 2. In the DSM-IV field trial for autism, about 90% of parents had experienced concern by age 2 years (Volkmar et al. 1994). Recognition can be influenced by several factors including parental sophistication (or denial), severity of associated developmental delay, and/or autistic symptoms (Rogers and DiLalla 1990; Short and Schopler 1988). With respect to onset, it should also be noted that in about 20–25% of cases,

and Schopler 1988). With respect to onset, it should also be noted that in about 20–25% of cases, parents report a pattern of regression as part of the onset of autism (Rogers and DiLalla 1990). This issue remains somewhat controversial and poorly understood since frequently studies have relied primarily on parental report, with little attention to aspects of either reliability or exploration of the nature of the regression reported. Sometimes, the issue is more one of a failure of development

the nature of the regression reported. Sometimes, the issue is more one of a failure of development to progress, and at other times parents note a regression but in the context of a pattern of ongoing delay. The most noteworthy pattern, i.e., of marked developmental regression in the face of clearly normal development previously, is the least common but also probably the most important for research (Siperstein and Volkmar 2004).

Operant Behavior Operant behavior is defined as voluntary behavior which is influenced by the consequences that follow it (Cooper et al. 2019). The term “operant” was coined by B.F. Skinner and used to reflect the idea that an organism “operates” on its environment when engaged in operant behavior. In his early works, Skinner studied the behavior of rats and pigeons under laboratory settings to gain a controlled understanding of the principles of operant behavior (Skinner 1938). Once he

to gain a controlled understanding of the principles of operant behavior (Skinner 1938). Once he established a foundational understanding, he evaluated his findings further, and within human populations. Through this work, he identified operant behavior as well as the process of operant conditioning (Pear and Eldridge 1984). Operant behavior is best understood in the context of what is called the three-term contingency or the antecedents, behavior, and consequences which comprise an instance of

three-term contingency or the antecedents, behavior, and consequences which comprise an instance of operant behavior. Antecedents refer to the stimuli which are present in the environment directly before an instance of behavior. Behavior is the phenomena of interest, or the response of an organism to said antecedents. Consequences refer to the stimulus change which occurs after behavior. Understanding consequences is critical to examining operant behavior. It is well understood that the

consequences is critical to examining operant behavior. It is well understood that the consequences which follow a behavior make it more or less likely that the behavior will occur again in the future (Cooper et al. 2019). That is to say, a reinforcing consequence will increase the future frequency of an operant behavior, and a punishing consequence will decrease its future frequency (Cooper et al. 2019). The decades of research and applied work on operant behavior and operant conditioning have

2019). The decades of research and applied work on operant behavior and operant conditioning have been critical in in the development of evidenced-based interventions to support individuals with autism spectrum disorder (ASD; Wolf et al. 1963). As the science of applied behaviour analysis predominantly focuses on operant behaviors, interventions which have emerged from the field aim to understand the operant conditioning process and change consequences to alter behavior (Sturmey et al. 2020).

the operant conditioning process and change consequences to alter behavior (Sturmey et al. 2020). Interventions which aim to aid in meaningful behavior change for individuals with ASD and related disorders, such as functional communication training, teaching self-help, social and leisure skills, and supports for maladaptive behavior, all focus specifically on operant behavior (Sturmey et al. 2020). Hence, operant behaviors are an essential area of study as they relate to ASD.

Operant Conditioning A process of learning in which a behavior’s consequence affects the future occurrence of that behavior. B. F. Skinner (1953) derived the principles of operant conditioning from Thorndike’s “law of effect,” which suggests that a behavior producing a favorable or satisfying outcome is more likely to reoccur, while a behavior producing an unfavorable or discomforting outcome is more likely to decrease in frequency (Thorndike 1911). Skinner’s experimental work focused on the

more likely to decrease in frequency (Thorndike 1911). Skinner’s experimental work focused on the effects of different schedules on the rates of operant responses made by rats and pigeons (Skinner 1953). His work revealed that the frequency of a behavior could be increased through reinforcement. Two types of reinforcement include positive reinforcement, the giving of a rewarding stimulus following a behavior, and negative reinforcement, the removal of an aversive stimulus following a behavior.

a behavior, and negative reinforcement, the removal of an aversive stimulus following a behavior. Similarly, the frequency of a behavior can be decreased through punishment. Positive punishment is the giving of an aversive stimulus following a behavior, and negative punishment is the removal of a rewarding stimulus following a behavior. The frequency of behavior can also be decreased through extinction, the discontin-uation of the behavior’s reinforcer (Skinner 1953). Alternatively, a new

extinction, the discontin-uation of the behavior’s reinforcer (Skinner 1953). Alternatively, a new behavior can be produced by means of shaping, the reinforcement of increasingly accurate approximations at the desired behavior. Operant conditioning has played an integral role in the development of effective interventions targeting the modification of behavior, specifically operant language training, in individuals with autism spectrum disorder (ASD) (Hewett 1965; Lovaas et al. 1966).

training, in individuals with autism spectrum disorder (ASD) (Hewett 1965; Lovaas et al. 1966). Additionally, applied behavior analysis (ABA) or the “Lovaas technique,” introduced by Ivar Lovaas, has validated the efficacy of operant conditioning principles in the treatment of individuals with ASD (Lovaas 1987).

Optimal Arousal The state of alertness and attention that best facilitates learning. For children with ASD, arousal is often disturbed and is especially labile. Maintaining optimal arousal, by providing the appropriate balance between stimulation and calming, is one of the challenges facing teachers working with this population.

Optimal Outcome A small percentage of individuals with autism spectrum disorders (ASDs) may go on to lose core symptoms of the diagnosis and achieve “optimal outcomes.” Helt et al. (2008) defined an individual with an optimal outcome as having a history of an ASD diagnosis, demonstrating average or above average academic and adaptive functioning, receiving minimal special education supports specific to autism symptoms, and not meeting criteria for a diagnosis of ASD diagnosis as determined by

to autism symptoms, and not meeting criteria for a diagnosis of ASD diagnosis as determined by administration of the Autism Diagnostic Observation Schedule (ADOS). It should be noted that losing an ASD diagnosis is not the only good outcome that can be achieved. Finding strengths in individual children with ASD that give them satisfaction and can be nurtured, maximizing their ability to communicate and have relationships with others, and successfully treating comorbid sources of distress (e.g.,

and have relationships with others, and successfully treating comorbid sources of distress (e.g., anxiety, depression) are other criteria for good outcomes. In fact, comorbid conditions such as anxiety and depression can persist in individuals who lose the ASD diagnosis and can be more distressing than the ASD symptoms themselves. Lovaas (1987) pioneered the study of “recovery” from ASD when he reported strong cognitive and academic outcomes in a small sample of individuals with

ASD when he reported strong cognitive and academic outcomes in a small sample of individuals with high-functioning ASD following early, intensive behavioral intervention. Since Lovaas’ study, a number of researchers have carried out further studies of outcome from ASD, including losing the diagnosis, with stronger experimental designs and more comprehensive measures of outcome (e.g., Fein et al. 2013; Sallows and Graupner 2005). Helt et al. (2008) estimate that between 3% and 25% of children

2013; Sallows and Graupner 2005). Helt et al. (2008) estimate that between 3% and 25% of children diagnosed with ASD lose the diagnosis and exhibit average cognitive, adaptive, and social abilities. Helt and colleagues argue that misdiagnosis of ASD does not explain this phenomenon. The authors suggest that this outcome from ASD could be limited to certain subsets of ASD and is likely strongly tied to early detection and treatment, characteristics of the child (e.g., cognitive abilities), and

to early detection and treatment, characteristics of the child (e.g., cognitive abilities), and maturation.

Recent studies have examined specific characteristics of children and adolescents with optimal outcomes using a variety of measures of psychological and neuropsychological functioning, as well as brain imaging. A comprehensive study by Fein and colleagues (summarized in Fein et al. 2013) indicated that a group of children and teenagers with optimal outcomes had similar academic, executive functioning, language, and social skills in comparison to typically developing study participants. When

language, and social skills in comparison to typically developing study participants. When compared to typically developing peers, the optimal outcome participants did display some subtle differences in their pragmatic language. They also presented with a higher incidence of psychiatric concerns than typically developing controls, particularly symptoms of attention-deficit/hyperactivity disorder and specific phobias (Orinstein et al. 2015). An important longitudinal study by Anderson et al.

and specific phobias (Orinstein et al. 2015). An important longitudinal study by Anderson et al. (2014) found that about 10% of their sample had “very positive outcome,” with a definition similar to Fein et al.’s definition of “optimal outcome”; they found that remitting of repetitive behaviors between ages 2 and 3 with intervention was the strongest predictor of this outcome. Eigsti et al. (2016) have also explored ways in which brain networks responsible for language may differ for individuals

have also explored ways in which brain networks responsible for language may differ for individuals with optimal outcomes. Findings indicated largely similar patterns of activation for individuals with optimal outcomes compared to those with ASD across several brain regions. However, the optimal outcome group also demonstrated “compensatory” activation in numerous regions, differing from both a typically developing control group and the ASD group. Results suggest that early treatment and

a typically developing control group and the ASD group. Results suggest that early treatment and learning experiences may result in normalized language performance for optimal outcome individuals but that differing brain activity may underlie these observable behavioral similarities in language processing. Further research is needed to understand the nature of differences between individuals with “optimal outcomes” and those with other developmental trajectories. Research suggests that

with “optimal outcomes” and those with other developmental trajectories. Research suggests that intensive early intervention, specifically applied behavior analysis approaches to therapy, may contribute to better outcomes in ASD (Fein et al. 2013; Orinstein et al. 2015).

Oral Sensitivity Oral sensitivity is defined as an atypical response to oral stimulation. Atypical responses include hyporeactive responses, hyperreactive responses, or sensory defensiveness. Hyporeactive responses are characterized by a diminished response to sensory input. Individuals who are hyporeactive to stimulation in the oral and pharyngeal regions may have delayed triggering of the swallowing mechanism, putting them at risk for aspiration. Hyperreactive responses are characterized by

mechanism, putting them at risk for aspiration. Hyperreactive responses are characterized by an excessive reaction to sensory input (Arvedson and Brodsky 2002). Hyperreactive responses to oral stimulation may develop into a conditioned facial defensiveness. This is because individuals may come to associate discomfort with the feeding process and develop a conditioned avoidance of food and other oral and facial stimulation (Arvedson and Brodsky 2002; Dodrill et al. 2004). Oral sensory

other oral and facial stimulation (Arvedson and Brodsky 2002; Dodrill et al. 2004). Oral sensory defensiveness is characterized by an emotional response to sensory input. Individuals who are orally defensive may take only a limited variety of tastes and textures orally and frequently refuse food. Treatment of oral sensitivity problems may involve adaptation of the sensory environment, implementation of specific techniques, and/or modifications of sensory qualities of food or feeding utensils

of specific techniques, and/or modifications of sensory qualities of food or feeding utensils (Arvedson and Brodsky 2002).

Oral-Facial Imitation Oral-facial imitation refers to the imitation of others’ actions that specifically involve the mouth or face. It has been extensively researched in infants, and is thought to be the earliest form of imitation present in typical development. There is evidence that neonates possess the capacity to imitate some oral-facial movements. This has led to theories positing that this type of early imitation plays a central role in the development of interpersonal skills, possibly

type of early imitation plays a central role in the development of interpersonal skills, possibly via the creation of shared representations of the self and others. Research also suggests a relationship between oral-facial imitation skills and speech development. In older individuals, the focus of oral-facial imitation research is often on the imitation of facial expressions, particularly those conveying emotion. Oral-facial imitation should be distinguished from oral-facial mimicry or

those conveying emotion. Oral-facial imitation should be distinguished from oral-facial mimicry or contagion. Whereas mimicry and contagion are considered automatic matching responses to others, imitation is thought to be volitional. There is some debate over whether neonatal oral-facial responses are automatic or volitional, but it is clear that older children and adults display behaviors of both types. A number of studies have implicated oral-facial imitation as a specific area of impairment

types. A number of studies have implicated oral-facial imitation as a specific area of impairment in autism spectrum disorder (ASD). Given that oral-facial imitation abilities may be important for language development and for social-emotional reciprocity and learning, difficulties within this area could partially underlie the social-communicative symptoms associated with ASD.

Oral-Motor Apraxia Oral-motor apraxia is the inability to volitionally sequence oral movements of the speech structure for nonspeech tasks in the absence of neuromuscular deficits such as paralysis or muscle weakness (Zemlin 1998). Patients with oral-motor apraxia demonstrate off-target effortful groping for correct movements involving the speech structure (e.g., clicking the tongue, licking the lips, whistling), or inconsistent trial-and-error attempts. Spontaneous and reflexive movements, such

whistling), or inconsistent trial-and-error attempts. Spontaneous and reflexive movements, such as swallowing while eating and smiling at a joke, are not affected (Freed 2000). Oral-motor apraxia often occurs in conjunction with apraxia of speech, although there is not a one-to-one correspondence. Either apraxia may exist in the absence of the other (Duffy 1995).

Oral-Motor Skills Oral-motor skills refer to the movement of the muscles of the face and oral area (e.g., mouth, jaw, lips, tongue, soft palate). These skills are influenced by muscle tone, muscle strength, range of motion, speed, coordination, and dissociation (the ability to move oral structures, such as the tongue and lip, independently of each other) (Kumin n.d.). Clinical experience suggests that the acquisition and maturation of oral-motor movements underlie sound production and feed-ing

that the acquisition and maturation of oral-motor movements underlie sound production and feed-ing skills (e.g., sucking, biting, and chewing) (Arvedson and Brodsky 2002). Children with developmental disabilities may demonstrate oral-motor patterns that are not observed in typical development. Atypical oral-motor patterns include jaw thrusting, tongue thrust, tonic bite reflex, lip retraction, tongue retraction, and nasal regurgitation (Morris 1978). A child’s oral-motor skills may be assessed

retraction, and nasal regurgitation (Morris 1978). A child’s oral-motor skills may be assessed by a speech-language pathologist.

Organizational Skills in Individuals with Autism Spectrum Disorders Organizational skills are a set of techniques used by an individual to facilitate the efficiency of future-oriented learning, problem-solving, and task completion. Organization requires the integration of several elements to reach a planned goal. Dawson and Guare (2010) define organization as “the ability to design and maintain systems for keeping track of information or materials” (p. 1). The broader domain of executive

systems for keeping track of information or materials” (p. 1). The broader domain of executive functioning plays a large role in the development and execution of organizational skills. Executive functioning is the multifaceted construct used to describe higher order, goal-directed thinking involving planning, inhibition, flexibility, organized search, and working memory and is thought to be impaired in individuals with ASD (Gyori 2006). Organization can be considered a sub-component of the

in individuals with ASD (Gyori 2006). Organization can be considered a sub-component of the larger executive function construct. Evidence suggests that individuals with autism spectrum disorders (ASD) have deficits in executive functioning abilities. For instance, impairments in flexibility, attention, and planning have been documented (O’Hearn et al. 2008). Those with ASD also have been noted to evidence dysfunction in their organizational skills (Kenworthy et al. 2005). This disorganization may

dysfunction in their organizational skills (Kenworthy et al. 2005). This disorganization may be due to the presence of the aforementioned executive functioning deficits and related regulatory sequelae, such as the fact that individuals with ASD have a greater tendency to overfocus on irrelevant details to the exclusion of conceptualizing the “big picture” (Kuschner et al. 2009). In contrast, people with ASD have been anecdotally noted to be highly organized regarding their special interests,

with ASD have been anecdotally noted to be highly organized regarding their special interests, such that they know every single detail about a topic and have organized the information quite well (Baron-Cohen 2009). To date, however, there is a relative dearth of research specifically focusing on the subcomponent of organization in individuals with ASD, their relationship to ASD symptoms and characteristics, their developmental unfolding, and their importance to developmental functions and

characteristics, their developmental unfolding, and their importance to developmental functions and outcomes. What literature is available has tended to address higher functioning individuals, with a focus on broader executive functions (e.g., Hill 2004). In this chapter, we provide an overview of the history of research on organizational skills within the context of executive functions in individuals with ASD; compare and contrast the development of organizational skills in typically

in individuals with ASD; compare and contrast the development of organizational skills in typically developing children and children with ASD, along with potential etiological agents; and present emergent interventions that aim to improve organizational skills.

Historical Background Organizational skills lie within the broader cognitive domain of executive functions. The empirical investigation of executive functions began in the 1980s, and research using samples of individuals with ASD soon followed, suggesting the presence of an array of difficulties as compared to typically developing individuals. In one of the first studies examining executive functioning in individuals with ASD, Rumsey (1985) used the Wisconsin Card Sorting Test (WCST) to compare

in individuals with ASD, Rumsey (1985) used the Wisconsin Card Sorting Test (WCST) to compare the cognitive flexibility of adult men with high-functioning autism to the flexibility of a sample of age-matched typical adults. Rumsey found that individuals with autism demonstrated significant perseveration when compared to the control group, a finding that has since been replicated with children and adolescents (Ozonoff et al. 2005; Prior and Hoffman 1990). Additional studies in the early 1990s

adolescents (Ozonoff et al. 2005; Prior and Hoffman 1990). Additional studies in the early 1990s revealed that individuals with high-functioning ASD had executive functioning deficits relative to other disorders, such as attention-deficit/hyperactivity disorder and learning difficulties, and across different cultures, suggesting that selected executive dysfunctions likely were core deficits in individuals with ASD (Ozonoff et al. 2005). The study of executive functioning has evolved to better

with ASD (Ozonoff et al. 2005). The study of executive functioning has evolved to better address the multidimensional nature of the construct, using a wider variety of outcome measures to consider other abilities such as categorization, working memory, inhibition, selective attention, and managing verbal feedback (Hughes 2001; Ozonoff et al. 2005). Indeed, a variety of models of executive function have now evolved (e.g., Stuss 2007; Friedman and Miyake 2017), and these are ripe for continued

have now evolved (e.g., Stuss 2007; Friedman and Miyake 2017), and these are ripe for continued examination of their relevance for this population. Despite these advances, there remains a paucity of research specifically examining organizational skills in individuals with ASD. The scientific examination of organization skills also is complicated by the tendency for individuals with ASD to be overly focused on details rather than conceptualizing the broad whole. Does this represent intact

overly focused on details rather than conceptualizing the broad whole. Does this represent intact organization or, rather, disorganization due to the lack of attention to peripheral but important environmental details? One result of this tendency to overfocus on selected tasks is the difficulty with the generalization or the appreciation that skills learned in one context may be applied to other contexts (Volkmar and Wiesner 2009). Further, this approach to tasks may indirectly contribute to

contexts (Volkmar and Wiesner 2009). Further, this approach to tasks may indirectly contribute to social skills difficulties, as to extract social information from various contexts requires both flexibility and the ability to organize this information in a meaningful way (Hughes 2001). Organizational skills also directly relate to an individual’s success with academic and vocational demands, as well as activities of daily living, such as paying bills, grocery shopping, and keeping up with

as well as activities of daily living, such as paying bills, grocery shopping, and keeping up with doctor’s appointments. As such, the area of organizational skills is a critical one for clinical investigation and day-to-day functioning. For individuals with ASD, organization and related executive functions have been associated with adaptive behavior (Pugliese et al. 2016), social functioning (Freeman et al. 2017), driving (Cox et al. 2016), and affective regulation (Wallace et al. 2016).

Current Knowledge The Development of Executive Functions and Organization in Typically Developing Children

In a typically developing child, the development and application of organizational strategies begins in infancy. As children remember information, they store it in an orderly manner through the use of categorization (Berk 2002). Three- to five-month-olds have been found to categorize stimuli by shape, size, number, and other physical characteristics. Berk (2002) cited a number of studies providing evidence that infants not only organize their physical world through the use of categorization but

evidence that infants not only organize their physical world through the use of categorization but their emotional and social worlds as well. This includes infants sorting people and voices by gender and age and the emerging ability to discriminate between emotional expressions. During early childhood (ages 2 through 6 years), children begin to use planning and sequencing in order to reach a goal with familiar or simple tasks. Children also begin to use strategies in problem-solving and move

with familiar or simple tasks. Children also begin to use strategies in problem-solving and move from less to more efficient strategies through practice, reasoning, and adult assistance, among other factors (Berk 2002). Generally, during these years, children will engage in a variety of executive functions, but they tend to be task or situation specific, with generalization of these skills being limited. By middle childhood (ages 6 through 11 years), children make more use of planning skills and

By middle childhood (ages 6 through 11 years), children make more use of planning skills and begin to engage in generalizing these skills to other tasks and situations. For instance, they will decide how to order steps so as to accomplish a complex task and then utilize those strategies for another task or situa-tion. In addition, children are able to utilize multiple strategies concurrently, and their long-term knowledge base becomes organized into more sophisticated, hierarchically structured

their long-term knowledge base becomes organized into more sophisticated, hierarchically structured networks (Berk 2002). Finally, adolescence to adulthood marks the development of more focused and regulated attention, more effective and efficient strategy development and use, and an expansion of metacognition (Berk 2002). Taken together, these lead to more highly developed organizational capabilities and skills.

The Development of Executive Functions and Organization in Individuals with ASD Although executive functions have been shown to be pervasively affected in many neurodeve-lopmental disorders across a range of ages and functional levels, less is known about the devel-opment of organizational skills in children with ASD or, more broadly, the developmental course of executive functions (O’Hearn et al. 2008). It has been theorized that although selected execu-tive function deficits (i.e., set

et al. 2008). It has been theorized that although selected execu-tive function deficits (i.e., set shifting and flexibil-ity) have been demonstrated in young children with ASD (mean age ¼ 5 years) relative to a control group of typically developing peers, these deficits are not autism-specific; but, instead, they are related to developmental delays. Another perspective with some empirical support is that executive functioning in preschool ASD is similar to that of young children with developmental

that executive functioning in preschool ASD is similar to that of young children with developmental delays matched on chronological and mental age, and suggests that executive dysfunction may emerge over the course of development and is not yet present (or observable) in early child-hood. In that regard, these deficits are secondary in nature (Ozonoff et al. 2005). There is evidence that executive dysfunction and impairments may be most prominent during adolescence (Tsatsanis 2005; Rosenthal et

dysfunction and impairments may be most prominent during adolescence (Tsatsanis 2005; Rosenthal et al. 2013), particularly the application of planning and the goal-directed or-ganization of information (Ozonoff et al. 2004). Kuschner et al. (2009) discovered that while typ-ically developing individuals demonstrated im-provements in organizational and planning skills with age when reproducing the Rey-Osterrieth Complex Figure (ROCF), no similar qualitative differences in performance were

the Rey-Osterrieth Complex Figure (ROCF), no similar qualitative differences in performance were displayed between children and adolescents/adults with HFA. In contrast, other findings have demon-strated improvements in executive function from childhood to adolescence in individuals with ASD, perhaps secondary to neuropsychological maturation; nevertheless, executive functioning in adulthood was found to remain relatively impaired despite these developmental gains (Brady et al. 2017; O’Hearn et

to remain relatively impaired despite these developmental gains (Brady et al. 2017; O’Hearn et al. 2008). Longi-tudinal research is needed to better illuminate the developmental trajectory of the various dimen-sions of executive functions in children with ASD, with a specific need to include carefully considered covariates (e.g., nonverbal learning difficulties) (Hagberg et al. 2015).

Although much is to be learned regarding the development of executive functions, evidence related to planning and organization deficits has begun to surface over the past 10–15 years. Geurts et al. (2004) compared children with high-functioning ASD and attention-deficit/hyperactivity disorder (ADHD) on measures of executive functioning. These investigators re-ported that the errors made by the ASD group were related to difficulties with planning and cognitive flexibility, whereas errors by the

ASD group were related to difficulties with planning and cognitive flexibility, whereas errors by the ADHD group were better attributed to deficits in inhibition and fluency. Problems with planning efficiency and self-monitoring, which are closely related to organizational skills, have been documented in a number of studies (Tsatsanis 2005). Impaired performance on the Tower of London task was reported for children with ASD relative to typically developing controls, and was attributed to impaired

for children with ASD relative to typically developing controls, and was attributed to impaired planning skills and reduced strategy formation (Robinson et al. 2009). Examining a sample of individuals with sub-threshold autism traits, Christ et al. (2010) found a pattern of deficits in a number of executive func-tioning domains including planning, organizing, and setting goals as measured by the Behavior Rating Index of Executive Function (BRIEF). In contrast, Christ et al. (2010) did not find a

Rating Index of Executive Function (BRIEF). In contrast, Christ et al. (2010) did not find a rela-tionship between autism symptomatology and the tendency to keep one’s work space and materials orderly, as measured by the Organization of Mate-rials Scale of the BRIEF. Overall, their work suggested that even individuals with subthreshold autism traits exhibit profiles of executive dysfunc-tion, including deficits in organization/planning, similar to those of individuals with diagnoses of ASD. These

deficits in organization/planning, similar to those of individuals with diagnoses of ASD. These findings suggest that executive dysfunction may appear on a continuum of impairment, although it appears that problems with organizational skills of children with ASD may not be clearly dissociable from other child-hood conditions (e.g., Tourette Syndrome, ADHD) (Hovik et al. 2017) – or even different subgroups of ASD (Blijd-Hoogewys et al. 2014). Adults with ASD who completed self-ratings of their

subgroups of ASD (Blijd-Hoogewys et al. 2014). Adults with ASD who completed self-ratings of their broader executive functions did report their planning and organization skills to be mildly impaired, and significantly lower than typical con-trols (Davids et al. 2016).

Additionally, individuals with ASD have been noted to have difficulty copying and remembering the Rey-Osterrieth Complex Figure (ROCF), a task which requires visuospatial abilities, plan-ning, and organization. Kenworthy et al. (2005) considered difficulty reproducing the ROCF, along with verbal organization deficits, to suggest impairments in organization. Kenworthy et al. (2005) expanded upon this suspicion to document deficits in the organization skills of individuals with high-functioning

this suspicion to document deficits in the organization skills of individuals with high-functioning autism (HFA) and Asperger’s disorder (AD) across several verbal and visual tasks. For example, although both high-functioning ASD groups were found to have intact ability to interpret discrete data, rela-tive impairments were noted in their ability to integrate and organize complex information. Another discrepancy that the authors attributed to a deficit in organizational skills was the

Another discrepancy that the authors attributed to a deficit in organizational skills was the partic-ipants’ ability to copy abstract visual informa-tion from a model but comparative difficulty with perceiving a visual gestalt when organizing puzzle pieces. Despite mean scores within the average range on several general cognitive mea-sures, these investigators found relative impair-ments in a number of domains of executive functioning in the high-functioning ASD groups, including tasks

in a number of domains of executive functioning in the high-functioning ASD groups, including tasks specifically measuring organiza-tion [e.g., the Planning/Organization Scale of the BRIEF, the Story Memory subtest from the Wide Range Assessment of Memory and Learning (WRAML), and the Object Assembly subtest from the Wechsler Intelligence Scale for Children-III (WISC-III)]. In sum, while many previous studies have emphasized deficits in plan-ning, a construct closely linked with organization,

studies have emphasized deficits in plan-ning, a construct closely linked with organization, this study provided more direct evidence that individuals with ASD have executive deficits in flexibility and organizational skills. Despite these findings, however, the deficits do not appear to be directly linked to the core symp-toms present in ASD, although recent theories have made an effort to assert this linkage (Baron-Cohen 2009). Further, from a clinical perspective, many clinicians will agree that

linkage (Baron-Cohen 2009). Further, from a clinical perspective, many clinicians will agree that their clients with ASD can be highly organized with respect to their restricted interests, perhaps being overorganized with respect to the intensity of their focus on these interests and their various components. For example, clinicians and researchers working with this population no doubt have been favorably impressed with the amount of focus, logic, and organization of information pertaining to a

impressed with the amount of focus, logic, and organization of information pertaining to a restricted interest. In many instances, these individuals actually have a knowledge base that would rival many experts in the targeted area, and their attention to the details pertaining to this information is exquisite. Anecdotally, this indicates that individuals with ASD are capable of goal-directed organization, although this skill is not always generalized and applied outside of their area of

organization, although this skill is not always generalized and applied outside of their area of restricted interest and, for many individuals with ASD, herein lies the challenge.

Explaining Organizational Dysfunction There are a number of possible underlying causes of, or contributors to, the impairments noted in organizational skills and other related aspects of executive functioning. Frith’s theory of weak cen-tral coherence (Frith 1989) posits that individuals with ASD tend to process information in frag-ments rather than in terms of the coherent whole. Consequently, individuals with ASD may focus on minor, irrelevant details and fail to process the underlying

individuals with ASD may focus on minor, irrelevant details and fail to process the underlying meaning of the cohesive information (Hughes 2001). Without an understanding of the broader concept, it is challenging to effectively organize and process presented information. Mesibov et al. (2004) proposed that in addition to focusing on minute details, individuals with ASD are less capable of assessing and prioritizing their relative importance. For example, Mesibov et al. (2004) described a young

and prioritizing their relative importance. For example, Mesibov et al. (2004) described a young man with ASD who recalled having difficulty following a con-versation that went from red balloons to birthday parties to the children enjoying themselves, because he became focused on “red balloons” and was unable to organize a schema for a birth-day party. Although not stated directly, it is likely that this individual, or others like him, could tell you an enormous amount of information about (red)

this individual, or others like him, could tell you an enormous amount of information about (red) balloons in a detailed and organized fashion. In addition, differences in executive function-ing in individuals with ASD have been attributed to abnormalities in brain maturation (e.g., decreased synaptic pruning early in development, structural differences in regions of the brain such as the cerebellum, and decreased connectivity within the brain due to volumetric differences of white matter in

and decreased connectivity within the brain due to volumetric differences of white matter in the corpus callosum; Han and Chan 2017; Hazneder 2011; O’Hearn et al. 2008). For example, Just et al. (2007) found evidence of reduced intracortical connectivity resulting in a lower degree of integration of infor-mation across certain cortical areas. The investi-gators concluded the presence of deficits in the integration of information at the neural level which, in turn, contributed to cognitive

in the integration of information at the neural level which, in turn, contributed to cognitive impair-ments. While a fuller discussion of these neurobi-ological features of ASD is beyond the scope of this chapter, it is important to note that the neuro-logical bases of executive dysfunctions in autism have yet to be fully explained (Han and Chan 2017; O’Hearn et al. 2008).

Interventions Impairments in executive function skills, such as planning, prioritizing, and organizing, may become more apparent when children begin school. In this situation, they are required to keep track of their personal items, follow multi-step directions, engage in multistep assignments, and complete tasks in a set amount of time. Despite a need for structure and order, children with ASD may have messy desks and turn-in incomplete assignments (Moore 2002). In this regard, there does

may have messy desks and turn-in incomplete assignments (Moore 2002). In this regard, there does appear to be a significant need for specific interventions to improve selected types of organization skills. There is some notion that various executive functions can be improved through intervention; however, there is a lack of strong empirical research looking at remediating executive functioning in children with ASD (Ozonoff et al. 2005). One randomized controlled trial has emerged examining the

children with ASD (Ozonoff et al. 2005). One randomized controlled trial has emerged examining the utility of the Unstuck and On Target intervention versus social skills training to address executive dysfunction in children with high functioning ASD (Kenworthy et al. 2014). Forty-seven third to fifth grade students were assigned to the Unstuck and On Target interven-tion, and they were matched by age, gender, and, race, IQ, ASD symptomotolgy, medication status, and parents’ education to 20

by age, gender, and, race, IQ, ASD symptomotolgy, medication status, and parents’ education to 20 students who were randomized to the social skills training. The inter-ventions were implemented in 28 small group sessions (30–40 min in length) and were conducted in the school setting. Findings revealed significant improvements in organization and planning for the Unstuck and On Target group, with effect sizes being in the small to medium range. Improvements also were noted in problem solving and

sizes being in the small to medium range. Improvements also were noted in problem solving and behavioral flexibility, with these find-ings translating into improved rule-following behaviors and significantly better capabilities to make transitions. Given the potentially pervasive nature of these problems, interventions may require collaboration between schools and fami-lies, organizational aids, and significant day-to-day structure (Volkmar and Wiesner 2009). Although there are some medical

and significant day-to-day structure (Volkmar and Wiesner 2009). Although there are some medical treatments that have shown promising early results (e.g., repeti-tive transcranial magnetic stimulation) (Ameis et al. 2017), educational and behavioral strategies currently remain the best options for improving organizational skills.

To date, from a best practice perspective, a number of strategies have been offered to address organizational problems. Volkmar and Wiesner (2009) recommended a stepwise approach, consis-tency and predictability, the use of functional rou-tines, providing time to process/prepare, and the use of aids such as visuals, organizers, and com-puters. Moore (2002) suggested physically orga-nizing the classroom and using color coding, visuals, daily schedules, checklists, teaching chil-dren to find the

and using color coding, visuals, daily schedules, checklists, teaching chil-dren to find the main idea rather than focusing on irrelevant details, and using an assignment note-book, among other aids. Dawson and Guare (2010) proposed that children lacking intact orga-nizational capacity should be provided with orga-nizational schemes. The children should be cued to use the organizational scheme and receive rein-forcement for using it. An example for organizing a backpack provided by Dawson and

receive rein-forcement for using it. An example for organizing a backpack provided by Dawson and Guare (2010) is to use specific pockets and compartments, which can be labeled or color coded for lunch, permission slips, money, and homework. This lat-ter example also may capitalize on the cognitive rigidity, or need for “sameness,” typically evidenced by many individuals with ASD. More generally, this approach also suggests the need for a thorough evaluation of various executive func-tions,

this approach also suggests the need for a thorough evaluation of various executive func-tions, including organizational capabilities.

Many of the aforementioned suggestions to remedy the difficulties associated with executive dysfunction are related to concepts from structured teaching. Structured teaching, a cornerstone of the TEACCH (Treatment and Education of Autistic and Communication handicapped CHildren) pro-gram, is based on the premise that clear structure and organization make the environment more nav-igable for individuals with ASD by clarifying expectations and enabling communication. This is achieved through the

with ASD by clarifying expectations and enabling communication. This is achieved through the use of physical organiza-tion, visual support, and schedules (Hartford and Marcus 2011). Goals of physical organization (e.g., dividers, clearly delineated areas for specific activities) include the addition of contextual clues, clarification of boundaries, and the minimization of distractions and stimulation. Visual supports are utilized to capitalize on the tendency for individuals with ASD to have

Visual supports are utilized to capitalize on the tendency for individuals with ASD to have relatively strong visual learning abilities and include picture pro-mpts, video modeling, ordered pictures, or step-by-step written directions, which can help in atten-tion and sequencing. Schedules can be used to establish functional routines and add predictability to the day, and they can indicate a sequence through words, pictures, or objects to facilitate smooth transitions and temporal

a sequence through words, pictures, or objects to facilitate smooth transitions and temporal understanding. In general, built-in organization through structured teaching methods can help individuals with autism effectively understand and participate in the world around them (Hartford and Marcus 2011). Direct instruction interventions with empirical support, such as providing organizational skills training, can also be used to improve the skills of children with ASD in the classroom. For

skills training, can also be used to improve the skills of children with ASD in the classroom. For example, in one of the few evidence-based studies related to organization training in ASD, elementary-age children with high-functioning autism and Asperger’s syndrome were found to increase the percentage of items correctly filed and decrease the number of seconds needed to retrieve a requested item following an intervention teach-ing the children self-monitoring skills and the use of a file box

following an intervention teach-ing the children self-monitoring skills and the use of a file box system to enhance organization (Dorminy et al. 2009).

Future Directions This encyclopedia entry has addressed an impor-tant but targeted area of executive functioning in the ASD population; namely, organizational skills. Despite the range of studies that have been focused on executive functions in this pop-ulation, few empirical studies have specifically examined the subcomponent of organization. The empirical literature that does exist in the domain of organization, and even executive functions more broadly, typically has studied indi-viduals

of organization, and even executive functions more broadly, typically has studied indi-viduals with high-functioning ASD, although it is noteworthy that more recent studies have begun to include individuals with ASD who have a broader range of overall functioning. It would be worth-while for future research to not only examine pro-files of executive functions that would include organization, but also to examine these profiles in lower functioning populations. While some might argue that these

also to examine these profiles in lower functioning populations. While some might argue that these problems may not be high on the priority list of needs for many of these individuals, such research could shed light on how organizational deficits contribute to the presence of aggressive, self-injurious, and repetitive behaviors as well as to the overall adap-tation of individuals with ASD who are higher functioning. For instance, it has been theorized that individ-uals engage in repetitive

are higher functioning. For instance, it has been theorized that individ-uals engage in repetitive behaviors when interpreting social situations as unpredictable as a means to impose order (Hughes 2001); thus, an understanding of how individuals with ASD dif-ferentially order and organize both social and nonsocial information might provide additional strategies for implementing successful interven-tions. In addition, although there is a breadth of research on neurodevelopmental constructs such

In addition, although there is a breadth of research on neurodevelopmental constructs such as attention, memory, language, and temporal-sequential ordering, there is limited research spe-cifically investigating organization in individuals with ASD, the developmental course of organiza-tional skills throughout the life span in this popu-lation, or how this cognitive function contributes to ASD symptom manifestation. Finally, there remain a myriad of additional questions related to the

to ASD symptom manifestation. Finally, there remain a myriad of additional questions related to the organizational skills of individuals with ASD. In addition to examining the multidimensionality of these skills across all ages and levels of functioning, questions per-taining to their generalized versus specific nature, associated measurement strategies, their relation-ships to core and associated symptoms in ASD, and their linkages to evidence-based practices all remain unanswered at present.

symptoms in ASD, and their linkages to evidence-based practices all remain unanswered at present. Specific studies addressing the organizational skills of individuals with ASD will continue to advance our knowl-edge of how these skills facilitate our overall understanding of ASD.

Orienting Response Orienting as has been defined as the aligning of attention with a source of sensory input (Posner et al. 1998). Research in autism has focused on how individuals with autism orient to different types of stimuli (e.g., visual, auditory, social, non-social) in different contexts (e.g., computer para-digms, naturalistic settings). Further, the components to orienting, disengagement of atten-tion and shifting attention, have been studied to evaluate possible deficits in both

of atten-tion and shifting attention, have been studied to evaluate possible deficits in both areas. Results have varied, however, depending upon the age of participants, comparison groups, and orienting paradigms. Considerable research has found that children with autism orient less frequently to social information than their peers and that their orienting to nonsocial stimuli is relatively less impaired (Dawson et al. 1998, 2004; Swettenham et al. 1998). Further, social-orienting impairments

impaired (Dawson et al. 1998, 2004; Swettenham et al. 1998). Further, social-orienting impairments are more commonly observed in natural settings than when completing computerized tasks (Greene et al. 2011). Social-orienting impairments, often recognized clinically when children do not respond to hearing their name called, are among the earliest observable symptoms of autism (e.g., Baranek 1999; Nadig et al. 2007). Research has demon-strated that children who orient more readily to social

Nadig et al. 2007). Research has demon-strated that children who orient more readily to social stimuli develop stronger joint attention and language skills over time (Dawson et al. 2004), supporting theories of the potential pivotal role social orienting may play in development of chil-dren with autism (Dawson and Lewy 1989; Mundy and Neal 2001).

Ornitz, Edward Edward M Ornitz 1945–1948 B.S. Stanford University, Palo Alto, California 1948–1952 M.D. Stanford University, School of Medicine, Palo Alto, California. Major Appointments (Institution, Location, Dates) 1952–1953 Internship, Los Angeles County General Hospital, Los Angeles, California 1955–1958 Psychiatry Residence and Research Fellow, Yale University School of Medicine, New Haven, CT December 1960–February 1965 Staff Psychia-trist, Reiss-Davis Clinic for Child Guidance, Los

CT December 1960–February 1965 Staff Psychia-trist, Reiss-Davis Clinic for Child Guidance, Los Angeles, California. September 1963–July 2006 Clinical Instructor, Assistant, Associate, and Full Professor in Res-idence, Department of Psychiatry, UCLA School of Medicine. July 2006–Present Professor Emeritus, Depart-ment of Psychiatry, UCLA School of Medicine. Major Honors and Awards Dr. Ornitz has been invited to and delivered pre-sentations at numerous national and international meetings. He has

invited to and delivered pre-sentations at numerous national and international meetings. He has been the recipient of numerous grants. Landmark Clinical, Scientific, and Professional Contributions A pioneer in the study of psychophysiological methods in the developmental neuropsychiatric disorders, Dr. Ornitz’s research has focused on brain mechanisms used to modulate arousal and stress. In addition to his long-standing interest in autism, he has conducted work in areas such as anxiety

In addition to his long-standing interest in autism, he has conducted work in areas such as anxiety disorders, response to pain, posttraumatic stress disorder, and various medical conditions. His laboratory has developed many techniques now widely used in the field. Short Biography A pioneer in the study of neurobiological process in autism, Dr. Ornitz and his colleagues were among the first to question the widespread early views of psychogenetic models of autism. This work included earliest

question the widespread early views of psychogenetic models of autism. This work included earliest studies of a range of neu-rophysiological processes including responses to vestibular stimulation, sleep, and brain stem-evoked responses. He also worked to apply some of the measures he developed in study of anxiety and PTSD. The author of 129 scientific publications, Dr. Ornitz was an active teacher as well as a research and trained several generations of workers at UCLA.

Otitis Media Otitis media is a middle ear infection that can cause a temporary hearing loss in the affected ear, or ears. The middle ear is a closed cavity in the temporal bone that is connected to the nasopharynx by the Eustachian tube. In early stages of otitis media (acute otitis media), the middle ear space becomes inflamed and pressure builds causing the tympanic membrane to stretch leading to intense pain. Acute otitis media can be treated with antibiotics, but most cases of otitis media

to intense pain. Acute otitis media can be treated with antibiotics, but most cases of otitis media resolve on their own within 2–4 weeks. When otitis media becomes chronic, fluid builds up in the middle ear space, but it is less likely to be painful. Chronic otitis media is not typically responsive to antibiotic treatment but can be treated with tympanostomy tubes. Tympanostomy tubes can be placed in the tympanic membrane when the condition is either chronic, causing a hearing loss greater than

in the tympanic membrane when the condition is either chronic, causing a hearing loss greater than 15 dB, influencing speech/language, or disrupting the learning process in school. Otitis media is reportedly more common in individuals with autism spectrum disorders than in the general population (Konstantareas and Homatidis 1987; Rosenhall et al. 1999; Smith et al. 1988), but more systematic research needs to be done to fur-ther investigate this relationship.

Outcome Studies Outcome studies describe the progress of individuals with autism as they move through adolescence and into adulthood. Some such studies have followed up groups of individuals first diagnosed as children over a number of years; others have involved investigations of different individuals at different ages. Follow-up studies of the same individuals from child to adulthood are particularly informative as they allow the investigation of factors in early child-hood that may help to

informative as they allow the investigation of factors in early child-hood that may help to predict outcome in later years.

Historical Background The earliest studies of outcome in autism were conducted in the 1950s by Leon Eisenberg (a colleague of Leo Kanner) in USA and Mildred Creak in England. Eisenberg, writing in the 1950s, documented the wide variety of possible outcomes. Many of the individuals he described remained very dependent on others for support, but about one-third were found to have made at least a “moderate social adjustment,” despite the lack of any specialist provision or treat-ment available at

social adjustment,” despite the lack of any specialist provision or treat-ment available at that time. A minority had man-aged to achieve good independence, although even among this group social impairments re-mained apparent. In a slightly later report from Britain, Mildred Creak described 100 cases of “childhood psychosis,” the term then often used for children with autism. A minority was rated as having made significant improvements, but around half were permanently institutionalized. Some

as having made significant improvements, but around half were permanently institutionalized. Some years later, Kanner followed up 96 young adults whom he had first diagnosed as children. Just over 10% were described as achieving relatively highly as adults and “mingling, work-ing, and maintaining themselves in society.” Kanner (1973) noted that in the majority of these cases, “a remarkable change took place” around their mid-teens. “Unlike most other autistic chil-dren they became uneasily aware

place” around their mid-teens. “Unlike most other autistic chil-dren they became uneasily aware of their peculiarities and began to make a conscious effort to do something about them.” In particular, they tried to improve their interactions with their peers, often using their obsessional preoccupations or special skills “to open a door for contact.” Asperger (1944) also reported positive outcomes for some of the individuals he had initially described, including a professor of astronomy,

for some of the individuals he had initially described, including a professor of astronomy, mathematicians, technologists, chemists, high-ranking civil servants, and an expert in heraldry. Again, it was often individuals’ special skills or interests that facilitated social integration. How-ever, like Eisenberg, both Asperger (1944) and Kanner (1971) highlighted the wide heterogeneity in outcome among individuals with autism, and how trajectories of development could change markedly over the

among individuals with autism, and how trajectories of development could change markedly over the years “ranging all the way from complete deterioration to a com-bination of occupational adequacy with limited, though superficially smooth social adjustment” (Kanner 1971). Over the course of the last 60–70 years, many subsequent studies have been conducted explor-ing the prognosis for individuals with autism as they move into adulthood, and the factors affect-ing outcome.

Current Knowledge In recent years, there has been a steady increase in the number of studies that have followed up individuals with autism from childhood into early adulthood and beyond. In order to facilitate comparisons between studies, many such studies have adopted a somewhat simplified categoriza-tion system, classifying participant outcomes as “very good” if they were employed, had friends, and high levels of independence; “good” if they were working with support, had some friends, and

and high levels of independence; “good” if they were working with support, had some friends, and could travel independently; “fair” if they required support in daily living but had some autonomy; “poor” if they had very limited autonomy; and “very poor” if they were living in highly special-ized or very restrictive environments. Magiati et al. (2014) conducted a systematic review of follow-up studies published between 1967 and 2013 (25 studies; n participants ¼ 2043; age range 17–44 years).

studies published between 1967 and 2013 (25 studies; n participants ¼ 2043; age range 17–44 years). Although the average IQ of most of the cohorts involved was relatively high (mean ¼ 79.0), almost 50% of participants were rated as having “poor” or “very poor” outcomes. Most remained highly dependent on others for their care and few had developed close friendships or intimate relationships. Average employment rates were 30%, and among those in employment, jobs were mainly low-skilled, part

employment rates were 30%, and among those in employment, jobs were mainly low-skilled, part time, and very poorly paid. Indeed, adults with autism tended to be more economically, educationally, and socially disadvantaged than other groups of individuals with developmental or intellectual disabilities (Roux et al. 2013). A subsequent review by Steinhausen et al. (2016) reported sim-ilar, rather depressing findings. Thus, of the 12 studies included in that review (dates 1967 to 2014; n ¼ 828

depressing findings. Thus, of the 12 studies included in that review (dates 1967 to 2014; n ¼ 828 individuals), 48% of participants were rated as having a “poor”/“very poor” out-come, and only in 20% was outcome classified as “Good.” Outcomes for some recent cohorts of individuals with higher levels of ability are some-what more positive (e.g., Gotham et al. (2015), Helles et al. (2017), Roy et al. (2015), and Taylor et al. (2015). See Howlin and Magiati 2017 for review), but even among these

al. (2015), and Taylor et al. (2015). See Howlin and Magiati 2017 for review), but even among these groups, social attainments are much lower than in the general population.

In their review, Steinhausen et al. (2016) also highlight the wide variation across studies. Thus, the mean estimated percentage of individuals re-ported to have a “good outcome” was 20% but with 95% confidence intervals varying from 14% to 27%; confidence intervals for the proportion with a “poor outcome” ranged from 37% to 59%. Many of these differences are due to the heterogeneity of the cohorts involved, with respect to age, IQ and language, autism severity, and many other factors. Different

involved, with respect to age, IQ and language, autism severity, and many other factors. Different outcome mea-sures also add to the complexity of comparing across studies, or over time. In particular, there is growing dissatisfaction with traditional “objec-tive” measures of outcome that focus primarily on employment, jobs, independent living, and close relationships. More recently, therefore, there has been a move toward more subjective outcome measures that may be more appropriate for

there has been a move toward more subjective outcome measures that may be more appropriate for indi-viduals with autism. These include factors such as satisfaction with life, good physical and mental health, adequate living conditions, and support-ive and positive social and family relationships. When these variables are taken into account, adult outcomes can appear much more positive than usually reported (Bishop-Fitzpatrick et al. 2016; Hong et al. 2016; Helles et al. 2017). Although

usually reported (Bishop-Fitzpatrick et al. 2016; Hong et al. 2016; Helles et al. 2017). Although “normative” measures of social out-come generally indicate that, as a group, adults with autism are much more socially, economically, and educationally disadvantaged than their peers, follow-up studies have also been important in highlighting the very positive changes that can occur at an individual level. Thus, typically, there are improvements in verbal and nonverbal commu-nication and in social

level. Thus, typically, there are improvements in verbal and nonverbal commu-nication and in social interactions, while ritualistic, stereotyped, and “maladaptive” behaviors tend to decrease from child- to adulthood (Lord et al. 2015; Woodman et al. 2015; see Howlin and Magiati 2017 for review). However, it is also evident that individ-ual trajectories can be very variable, and it remains very difficult accurately to predict adult outcomes from early child characteristics. Lord et al. (2015)

difficult accurately to predict adult outcomes from early child characteristics. Lord et al. (2015) have described a number of different trajectories of development in cognitive, verbal, and social skills, and in repetitive behaviors, and they highlight the importance of further work in this area, both for identifying the specific genetic etiologies underlying different phenotypes, and for develop-ing more individually tailored interventions.

Future Directions It is evident that, in the 70 years since autism was first formally described by Kanner, there have been significant improvements in outcome. In cohorts studied before 1980, almost no individ-uals had received full-time education, very few lived independently or had jobs, and over half of all adults were placed in long-stay hospitals or institutions for people with mental retardation (Howlin 2014). For example, in the very early studies of Rutter and colleagues (Lockyer and

(Howlin 2014). For example, in the very early studies of Rutter and colleagues (Lockyer and Rutter 1969, 1970; Rutter et al. 1967), most chil-dren had never attended full-time school and many spent their adult years in institutions. Over the last few decades, access to early diagnosis, more intensive intervention programs, specialist educational support, in both school and college, and supported employment programs have greatly increased. There have also been increases in the numbers of

employment programs have greatly increased. There have also been increases in the numbers of individuals living in their own homes, either independently or with some minimal super-vision, and of the numbers of individuals in employment (see Howlin and Moss 2012). Nev-ertheless, the overall findings from current follow-up research indicate a poor prognosis for most individuals with autism, at least when standard measures of “good” social outcome are employed. Relatively few individuals, even

when standard measures of “good” social outcome are employed. Relatively few individuals, even those of high IQ, achieve full independence and social integration in adult life. The financial costs of supporting adults with autism also remain very high, due to their continuing need for medical care, residential or supported living accommodation, and to pro-ductivity loss, both by caregivers as well as by individuals themselves (Leigh and Du 2015). Fur-thermore, despite the huge expansion in

well as by individuals themselves (Leigh and Du 2015). Fur-thermore, despite the huge expansion in inter-vention research for children with autism over recent years, there is, so far, little evidence that early intervention programs have had any sig-nificant impact on improving life-time prospects. In the field of autism, adult intervention research lags far behind child intervention research in both quantity and quality (NICE 2012). A lack of appropriate services for adults, especially those of

quantity and quality (NICE 2012). A lack of appropriate services for adults, especially those of average IQ, also means that they remain very disadvantaged compared with the general popula-tion and indeed with adults with other forms of disability (Roux et al. 2013).

There is also a sig-nificant gap in knowledge about what happens to individuals with autism as they approach old age (Wright et al. 2016). Almost all current adult outcome studies have focused on younger indi-viduals in their 20s to 40s. There is little research on individuals in the middle years and no large-scale studies of outcome in those aged over 60. To date, knowledge about the aging process in autism is extremely limited and systematic information about the physical and mental health

in autism is extremely limited and systematic information about the physical and mental health needs of elderly people with autism is lacking. For exam-ple, it is not known whether rates of dementia are likely to be higher or lower in this group than in the population as a whole. It is also evident that many individuals remain highly dependent on their families for support throughout adulthood. How they will cope when parents are no longer able to support them is a further issue with major

How they will cope when parents are no longer able to support them is a further issue with major implications for society as a whole.

Overcorrection Overcorrection is a behavioral intervention devel-oped by applied behavior analysts and is based on the belief that the challenging behavior of persons with autism spectrum disorders are maintained by social factors (e.g., attention from other people, escape or avoidance from low-preference aca-demic activities such as math) or nonsocial factors (e.g., sensory reinforcement). Overcorrection is a name given to a package of procedures that con-sists of two components (restitution

is a name given to a package of procedures that con-sists of two components (restitution and/or posi-tive practice). Restitution consists of requiring the person displaying challenging behavior to correct their actions to a state that is vastly improved from what existed prior the occurrence of the challeng-ing behavior, sometimes repeatedly. For example, if a child throws a toy truck at his or her teacher, they might be required to pick up the truck and then clean up the play area of their

her teacher, they might be required to pick up the truck and then clean up the play area of their classroom. Positive practice consists of having an individual engage an adaptive behavior that is functionally incompatible with their challenging behavior (e.g., playing with the truck appropriately and then putting it away in the correct location), some-times repeatedly. Depending on the problem behavior targeted, restitution and positive practice may be used either in combination or alone.

Historical Background Overcorrection is an applied behavior analytic intervention developed by Richard Foxx and Nathan Azrin in the early 1970s. In their early studies, Foxx and Azrin demonstrated that over-correction could successfully reduce a wide range of challenging behavior including (a) aggression toward other people, (b) biting of fingernails, (c) inappropriate mealtime behavior (e.g., tossing food on the floor), (d) pica (e.g., eating nonedible objects), (e) stereotypic or other

tossing food on the floor), (d) pica (e.g., eating nonedible objects), (e) stereotypic or other interfering repet-itive behavior, (f) self-injury, and (g) toileting accidents of individuals with autism and other developmental disabilities (Foxx and Bechtel 1983). For example, in 1974, Azrin and Wesolowski showed that overcorrection could be used to reduce the food stealing of 34 persons with autism or other intellectual disabilities living in an institution. If a person took food from another

or other intellectual disabilities living in an institution. If a person took food from another person, they were required to return the food (restitution) and to buy more food and give it to the person from whom they had stolen (positive practice). Since the publication of Foxx and Azrin’s initial studies, multiple indepen-dent researchers have successfully replicated the findings of their studies providing data-based evidence that overcorrection is an evidence-based intervention. That is,

providing data-based evidence that overcorrection is an evidence-based intervention. That is, overcorrection meets the standards for independent replica-tion established by panels of experts.

Rationale or Underlying Theory In the behavior analytic literature, overcorrection is classified as a punishment-based strategy (Foxx 1982; Foxx and Bechtel 1983). If overcorrection is used contingent on the occurrence of a targeted challenging behavior and the frequency of the behavior decreases in the future, then the behav-ioral definition of punishment is met (see Azrin and Holz 1966 for a technical behavior analytic definition of punishment). According to Foxx and Bechtel (1983),

for a technical behavior analytic definition of punishment). According to Foxx and Bechtel (1983), overcorrection also often works due to negative reinforcement. That is, individuals often engage in behaviors designed to avoid or terminate its use. In their early publications, Foxx and Azrin provided two rationales for the use of overcorrection. First, overcorrection was described as promoting “normalization” by employing consequences which typically devel-oping people apply to themselves when

by employing consequences which typically devel-oping people apply to themselves when they dis-play challenging behavior which is judged to be socially inappropriate. For example, someone who is angry and throws paper on the floor would pick it up. Second, overcorrection, unlike most other behavioral reductive procedures (e.g., time-out, response cost), provides the clinician with the advantage of being able to provide an educative consequence which is functionally equivalent to an individual’s

being able to provide an educative consequence which is functionally equivalent to an individual’s challenging behav-ior. Thus, overcorrection may be beneficial to an individual by helping them experience the effort required by other people to correct the damage caused by their challenging behavior. Some researchers also have argued that when over-correction includes a positive practice component, it is less restrictive than other punishment-based strategies (e.g., time-out; contingent exercise)

it is less restrictive than other punishment-based strategies (e.g., time-out; contingent exercise) because it also teaches adaptive functionally equivalent behavior. Although overcorrection has typically been implemented contingent on the occurrence of challenging behavior, the authors of a small number of studies have implemented it based on the absence of a behav-ior. For example, Foxx (1977) used over-correction to increase the eye contact of children with autism and intellectual

(1977) used over-correction to increase the eye contact of children with autism and intellectual disabilities (e.g., con-tingent on the lack of eye contact, a child was required to practice looking at the face of another person).

Goals and Objectives Overcorrection is an intervention designed to reduce the challenging behavior of persons with autism (e.g., aggression, property destruction, self-injury, and pica).

Treatment Participants Individuals who are dually diagnosed with an autism spectrum disorder and a moderate to pro-found intellectual disability are most likely to benefit from overcorrection. Prior to the participa-tion in the clinical use of overcorrection, a com-prehensive functional behavioral assessment should be conducted and less restrictive; poten-tially effective interventions should be attempted (e.g., functional communication training, differ-ential reinforcement of other behavior).

attempted (e.g., functional communication training, differ-ential reinforcement of other behavior). Given the restrictiveness of the intervention, evaluation of overcorrection using a single-case experimental design that rules out threats to internal validity and the conducting of frequent fidelity checks is recommended.

Treatment Procedures The published literature contains a variety of pro-cedural variations of overcorrection. Both the topography of the overcorrection responses and duration of the application have differed widely from study to study. Gross motor movements with physical guidance termed “functional movements training” by Foxx and Azrin (1973) are the most commonly used positive practice procedure reported in the literature. This procedure involves instructing a person to hold a body part in a

reported in the literature. This procedure involves instructing a person to hold a body part in a particular position for predetermined length of time while providing physical guidance to ensure that the person engages in the correct topograph-ical form for the required number of repetitions. Contingent on stereotypic hand clapping, Foxx and Azrin (1973), for example, required a 7-year-old boy with autism to engage in 5 min of functional movement training. The boy was required to engage in a

with autism to engage in 5 min of functional movement training. The boy was required to engage in a series of hand placements each for approximately 15 s (e.g., hands above head, hands straight out in front of him, hands in pockets). While the majority of studies have used gross motor movements which are topographi-cally similar to the target behavior, a few studies have employed arbitrary movements suggesting that the contingent relationship between the targeted behavior and motor movements is

suggesting that the contingent relationship between the targeted behavior and motor movements is more important than the similarity of the topography. For problem behavior involving physical aggres-sion toward other people or property destruction, positive practice typically involves requiring a person to be quiet and relaxed for a prespecified period of time (e.g., laying calmly on a mat for 15 min before practicing picking up and putting away toys). For inappropriate mouthing or ingesting of

min before practicing picking up and putting away toys). For inappropriate mouthing or ingesting of objects, positive practice usually involves cleaning a person’s mouth and lips with mouthwash contingent on the targeted behavior. In the published literature, researchers have exam-ined the use of varying durations of over-correction (e.g., 10 s, 15 min). However, the lack of parametric studies comparing the use of vary-ing durations of overcorrection makes it difficult to identify the most

comparing the use of vary-ing durations of overcorrection makes it difficult to identify the most appropriate duration to rec-ommend to clinicians.

Efficacy Information A variety of strengths and limitations of over-correction have been identified in the published literature. First, several studies have demonstrated that overcorrection has produced a clinically sig-nificant reduction in behavior after other behavioral interventions had failed (e.g., differential reinforce-ment of other behavior, verbal reprimands, time-out, simple correction). Second, published research studies using single-case experimental methods have shown that often

Second, published research studies using single-case experimental methods have shown that often overcorrection produces a rapid reduction in challenging behavior for many participants. Therefore, overcorrection may be a useful intervention strategy for persons whose challenging behavior routinely results in injury to self or other people (e.g., bruising) or is potentially life threatening (e.g., pica). Researchers have also suggested that the educative aspects of positive practice shift the

pica). Researchers have also suggested that the educative aspects of positive practice shift the attention of parent and teacher from focusing on the suppression of problem behavior to the adaptive skills that need to be taught to replace the challenging behavior. Several potential limitations of overcorrection also have been identified. First, overcorrection requires the person participating in the interven-tion to engage in the corrective and alternative behaviors immediately following the

the interven-tion to engage in the corrective and alternative behaviors immediately following the occurrence of challenging behavior. Although many people immediately respond to verbal instructions to engage in the corrective and alternative behaviors, some people require physical prompts to do so. A person may resist attempts to physically prompt them, and in some cases, they may become aggressive or require a fair amount of physical effort to guide them through the intervention. Alternative

or require a fair amount of physical effort to guide them through the intervention. Alternative interventions should be used with individuals who are too aggressive or resistant to potentially experience injuries. Another potential limitation is the high level of supervision and time required to implement overcorrection. In order to implement overcorrection correctly, the person implementing it needs to be continuously avail-able and in close-enough physical proximity to implement the

it needs to be continuously avail-able and in close-enough physical proximity to implement the intervention and to consistently use physical prompting, when necessary. Since the publication of Foxx and Azrin’s early research, there has been much debate about the use of punishment-based intervention strategies. This debate has centered around two positions. From a right-to-effective treatment perspective, some people have argued that persons with autism and other developmental disabilities have

some people have argued that persons with autism and other developmental disabilities have the right to the most effective treatment and for some individuals, this might support the use of a potentially quick-acting punishment-based intervention. Other people argue that advance-ments in intervention strategies such as functional communication have eliminated the need for the use of punishment-based intervention strategies. The controversy concerning the pros and cons related to the use of

intervention strategies. The controversy concerning the pros and cons related to the use of punishment-based interven-tions warrants careful consideration by parents, teachers, and clinicians prior to the implementa-tion of overcorrection.

The majority of research studies evaluating overcorrection have used single-case research designs and methods and have demonstrated that overcorrection generally produced a clinically significant change in behavior. The overcorrection literature could potentially benefit from the conducting of clinical trials, the manualization of intervention procedures, and the conducting of quantitative meta-analytic reviews.

Outcome Measures Direct observational measures such as frequency or rate of occurrence of the targeted behavior or percentage of observational intervals in which the target problem behavior occurs are the outcome measures used to evaluate whether overcorrection produces a clinically significant reduction.

Qualifications of Treatment Providers Minimal qualifications for the implementation of overcorrection include a master’s degree or doc-toral degree in applied behavior analysis or psy-chology with specific training in functional behavioral assessment and applied behavior ana-lytic interventions for challenging behavior.

Oxytocin The social and cognitive deficits in autistic spec-trum disorder (ASD) patients remain a therapeutic challenge for both health care professionals and family (Cataldo et al. 2018). In recent years, several clinical studies showed the neuropeptide oxytocin, which facilitates trust, bonding, and com-munication, is decreased in ASD patients and other neuropsychiatric disorders (Cataldo et al. 2018; Peñagarikano et al. 2015; Vanya et al. 2017; Zhang et al. 2017). Specifically, several

et al. 2018; Peñagarikano et al. 2015; Vanya et al. 2017; Zhang et al. 2017). Specifically, several clinical studies demonstrated that administration of oxyto-cin improved social and cognitive skills in animal models and ASD patients (Cai et al. 2018; Cataldo et al. 2018; Peñagarikano et al. 2015; Vanya et al. 2017). Furthermore, these studies indicate that oxy-tocin improves social-cognitive function through three G-protein coupled receptors: OXTr, AVPR1a, and AVPr1b (Cataldo et al. 2018).

function through three G-protein coupled receptors: OXTr, AVPR1a, and AVPr1b (Cataldo et al. 2018). Fur-ther clinical trials are needed to assess the efficacy and diagnostic potential of oxytocin in the treat-ment and prognosis of ASD.

Pain in Autism Spectrum Disorders Pain refers to “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” It is important therefore to understand that pain is more than a simple “ouch” and refers to the emotional, cognitive, and social aspects associated with potentially noxious physical sensations. Therefore, the current entry will focus on responses to tactile, thermal, and chemical stimuli which have the potential to result in unpleasant

to tactile, thermal, and chemical stimuli which have the potential to result in unpleasant sensations. This entry will not consider distressing responses to emotional or other sensory experiences; for a review of these, see the entry ▶“Sensory Processing”. To understand both the experience of pain, the expression of pain, and the relationship of these to ASD, it is also important to consider the process by which pain is perceived and then com-municated. When considering painful events that

the process by which pain is perceived and then com-municated. When considering painful events that start in the periphery (e.g., pain resulting from an injury/tissue damage), it is often possible to see the noxious input, although this is not always the case. This potential noxious input is then commu-nicated along peripheral fibers before reaching the spine, at which time it can be modulated either up or down. Subsequently, in the brain, neural responses to this noxious input are then

either up or down. Subsequently, in the brain, neural responses to this noxious input are then contextu-alized with associated suffering to generate a pain percept.

In addition to the social-communicative and repet-itive behavioral routines which are characteristic of autism, there is a growing recognition that a significant percentage of those who have an autism diagnosis also show evidence of altered sensory responses (for more comprehensive reviews, see ▶“Sensory Features as a Marker of Autism Spectrum Disorders”, ▶“Short Sensory Profile in Autism”, ▶“Sensory Impairment in Autism”, ▶“Sensory Processing”, and others). Within the Diagnostic and Statistical

Impairment in Autism”, ▶“Sensory Processing”, and others). Within the Diagnostic and Statistical Manual 5th edition, a specific example of sensory atypi-cality was given as an “insensitivity to cold/heat/ pain.” Thus, a greater understanding of pain responsivity in ASD is warranted. Pain response in ASD is an important issue, as pain may be the first or only sign of illness or injury. Importantly, individuals with ASD are both at greater risk of injury and having other medical complaints that

individuals with ASD are both at greater risk of injury and having other medical complaints that require potentially painful medical procedures; thus, altered pain responsivity could be highly problematic. Con-cern about a proper understanding of pain in ASD is compounded by the communicative and intellectual challenges present in a significant pro-portion of individuals with ASD, which may mean many are less able to accurately report the degree and nature of pain experience. Further,

may mean many are less able to accurately report the degree and nature of pain experience. Further, self-injurious behaviors and co-occurring pain-related medical conditions, such as chronic gas-trointestinal distress, are common in ASD and could reflect altered pain perception. Successful pain management is crucial: pain hyposensitivity can result in inadvertent injury and reduced treat-ment, while hypersensitivity to innocuous sensory stimuli can result in pain-like behaviors or anxi-ety.

while hypersensitivity to innocuous sensory stimuli can result in pain-like behaviors or anxi-ety. Without a clear understanding of how pain is experienced and communicated in ASD, there is a greater risk for mismanaged pain in ASD. The aim of the current entry is to discuss the evidence for an altered pain experience in ASD. This entry is organized into a number of subsections: Case Studies, Self-Reported Pain Experiences and Responses, Observational Evidence, Laboratory Psychophysical

Self-Reported Pain Experiences and Responses, Observational Evidence, Laboratory Psychophysical Studies, and Neuropsychological and Neuroimaging, followed by a Summary with Future Directions for Research.

Case Studies The earliest accounts of pain alterations in ASD come from a number of either clinical or anecdotal observations of people with ASD who did not display typical signs of pain or distress in response to experiences which most people find painful. Early anecdotal accounts include a child putting a car cigarette lighter into their mouth without crying out or a child who did not respond “even when struck hard.” Further clinical accounts have more formally reported altered pain

respond “even when struck hard.” Further clinical accounts have more formally reported altered pain behaviors. The most widely discussed case is of a girl, “Sally,” who would play in the snow without clothes on (Wing 1976). Other accounts include a boy who placed his hand on a stove and was only alerted to the burning sensation by the smell. These cases are often more complex: in two cases adolescents with ASD were reported to respond atypically to injuries (i.e., not responding when holding

with ASD were reported to respond atypically to injuries (i.e., not responding when holding the hot handle of a frying pan); however, the same individuals reported having frequent headaches and chronic abdominal pain. See below in this entry for more information about chronic pain in ASD (Bursch et al. 2004). Estimates of the number of individuals with ASD who might have reduced pain sensitivity have suggested that for those in inpatient care, this may be between 25% and 55% who have an

have suggested that for those in inpatient care, this may be between 25% and 55% who have an observable reduction in pain (Gillberg et al. 1985). These populations were however generally nonverbal, and the modes of determining reduc-tions in pain responses are unclear.

Self-/Parent Report Self-report of pain is considered the “gold stan-dard” of pain assessment. As such, most studies in ASD populations have compared self-report and caregiver reports of pain to the general population. These measures rely on memories for pain, which may be unreliable, as well as the ability to make judgements of others’ private pain state. Similarly, self-report requires internal assessment of one’s own pain to then make a comparison. This may present particular challenges

assessment of one’s own pain to then make a comparison. This may present particular challenges given the evidence of difficulties with interoception in ASD (see the entry ▶“Interoception” for more information). Self-reported studies of pain response in ASD provide contrary evidence with some studies suggesting that individuals (8–54 years old) with ASD reported lower pain thresholds compared to IQ-matched typical controls on the sensory sensi-tivity questionnaire (Minshew and Hobson 2008).

to IQ-matched typical controls on the sensory sensi-tivity questionnaire (Minshew and Hobson 2008). However, scores in the Charleston Pediatric Pain Pictures and a Faces Pain Rating Scale suggest no difference with adolescents with ASD- and IQ-matched controls (Bandstra et al. 2012). Others have taken the alternative approach by asking parents to report on the pain that their children experience. Approximately 40% of par-ents have reported that their child shows either reduced or greatly

Approximately 40% of par-ents have reported that their child shows either reduced or greatly reduced pain sensitivity. There are challenges using this approach as this still involves the ability to compare one person’s pri-vate experience to another. Parents must also make assumptions about their child’s internal state, which assumes a shared socially communi-cative representation. It is also important to consider how those with ASD discuss their pain with others. It has been suggested that

important to consider how those with ASD discuss their pain with others. It has been suggested that children with ASD can use body diagrams to indicate the location of pain; how-ever, they may struggle in using intensity scales for pain (neurotypical children often also find these difficult). Although there are vast differ-ences regarding the language that children may be able to use to discuss pain (some using words like “excruciating” or “twisting”), they most gen-erally prefer to discuss

pain (some using words like “excruciating” or “twisting”), they most gen-erally prefer to discuss “hurt” rather than “pain.” It was also notable that children generally pre-ferred not to spend time discussing their pain. Children with ASD may also prefer to use parents or carers as a “gatekeeper” to discuss their pain. Thus, studies are needed to incorporate differ-ences in pain communication across the lifespan for people with ASD.

Observational Studies A major approach to understanding the pain responses of people with ASD, and in particular those who are either unable to communicate ver-bally or have limited verbal communication, has been to observe behaviors in the context of poten-tially painful medical procedures. These have been conducted with both recognized/standard-ized schedules and more general measures. These studies still tend to measure only socially communicative displays of “pain,” yet they bene-fit from

studies still tend to measure only socially communicative displays of “pain,” yet they bene-fit from an impartial observer and discrete episode of standardized pain. Studies have generally focused on observa-tions of venepuncture procedures; however, the measures of pain taken during these proce-dures have varied. Studies have shown that chil-dren with ASD show greater facial activity (Childhood Facial Action Coding System) during the needle insertion phase of the procedure, as well as extended

Action Coding System) during the needle insertion phase of the procedure, as well as extended facial and behavioral reactions following the procedure. Others have found reduced behavioral reactivity, however elevated heart rate and plasma β-endorphin levels and increased self-injurious behaviors following the procedure. These data reporting increased reactivity to pain are in contrast to hyporeactive diagnostic criteria and self-, parent, and clinician reports in individuals with ASD. Yet these

diagnostic criteria and self-, parent, and clinician reports in individuals with ASD. Yet these studies cannot separate specific pain behaviors from a distress reaction due to an unfamiliar environment, with unfamiliar people and experiencing an unfamiliar sensation. A further challenge of this approach and these studies is that independent of ASD, individuals with intellectual delay might have reduced social communication of emotions and in particular pain (Gilbert-MacLeod et al. 2000). Given

social communication of emotions and in particular pain (Gilbert-MacLeod et al. 2000). Given that the populations in these studies were unable to report on their experiences during the procedure, it is unclear what the precise cause of their behaviors might have been.

Psychophysics A wide range of psychophysical approaches have been used to quantify the response of individuals with ASD to potentially painful stimuli. Most stud-ies have been broadly based on the German Neuro-pathic Pain Network (DFNS). These studies investigate the graded psychophysical response to stimuli, allowing quantification of clinically relevant perception and pain thresholds. Standardized pro-tocols are essential in order to minimize variability and produce reliable and comparable

pro-tocols are essential in order to minimize variability and produce reliable and comparable results, as well as clinical feasibility in its application. Early studies exploring this question generally focused on single modalities for pain assessment. These showed no differences between ASD adults and controls for electrocutaneous pain; however, ASD adults were more sensitive to pressure pain. Further, there have been conflicting findings about thermal pain thresholds with studies showing either

there have been conflicting findings about thermal pain thresholds with studies showing either no difference or greater sensitivity in ASD. More recently, two studies have utilized comprehensive psychophysical batteries. In each case, no clear evidence was found for altered pain perception in ASD (Vaughan et al. In press).

Neuropsychological Evidence Examining neural responses to pain in autism pro-vides evidence of altered neural processing of pain and a communication-independent assessment of pain responses. The neural pain signature (NPS, somatosensory regions, insula, anterior cingulate) (Wager et al. 2013) reliably responds in a linear fashion to perceived intensity of a pain stimulus. However, in adults with ASD, NPS responses are initially intact but dramatically decrease prior to the end of the painful

ASD, NPS responses are initially intact but dramatically decrease prior to the end of the painful stimulus, even while partic-ipants continue to report pain (Failla et al. 2018). In other studies, there is evidence that people with ASD have heightened neural responses during pain anticipation (Gu et al. 2018). Neural responses to viewing pain in others (vicarious pain) overlap heavily with the NPS and may provide insight into pain processing and dif-ferences in communication about pain evident

and may provide insight into pain processing and dif-ferences in communication about pain evident in autism. Vicarious pain is also important for under-standing social learning about pain expression norms. Results from neuroimaging studies of vicar-ious pain in autism are mixed, with evidence of intact (Hadjikhani et al. 2014) and decreased neural responses (Krach et al. 2015).

Chronic Pain Although research on co-occurring conditions in autism has received substantial interest in recent years (see the entry ▶“Comorbidity” for review), comparatively little of this work has specifically explored co-occurrence with pain conditions and experiences. A recent service review has suggested that although autism has a population prevalence of approximately 1%, as much as 13.7% of patients in a pediatric chronic pain ser-vice might meet criteria for autism. Therefore, children

patients in a pediatric chronic pain ser-vice might meet criteria for autism. Therefore, children and adolescents with ASD may be more susceptible to developing chronic pain complaints than their neurotypical peers (Lipsker et al. 2018). Interestingly, this increase in chronic pain presen-tation in ASD may be particularly prevalent in females with ASD; however, more data is needed to confirm these effects. Importantly, individuals with ASD also expe-rience a number of co-occurring conditions

effects. Importantly, individuals with ASD also expe-rience a number of co-occurring conditions that are inherently painful or could negatively impact pain (i.e., mood disorders (Failla et al. 2019) or sleep disorders (Richdale and Schreck 2009). In particular, gastrointestinal distress is commonly observed in children with ASD; estimates have suggested that approximately 25% of children with ASD may experience significant and persis-tent gastrointestinal distress at any time, and about half of

may experience significant and persis-tent gastrointestinal distress at any time, and about half of these report abdominal pain as an impor-tant feature of this experience.

Potential Evidence from Animal Models Studies in animal models suggest potential bio-logical alterations in pain responsivity related to specific genetic vulnerabilities in ASD. Mouse models of ASD exhibit altered pain behaviors and/or neurobiology (i.e., SHANK3; Han et al. 2016), parvalbumin knockout (Wöhr et al. 2015). In this context, it is unclear if aberrant pain behaviors represent downstream conse-quences of primary sensory processing differ-ences specific to ASD or nociceptive-specific

conse-quences of primary sensory processing differ-ences specific to ASD or nociceptive-specific functional differences. Interestingly, mice lacking pain-related genes (i.e., mu-opioid receptor) also exhibit ASD-like behaviors (Becker et al. 2014). Future work is needed to understand this complex overlap in ASD and pain biology.

Future Considerations At this stage, it is important to appreciate the heterogeneity in this population. There is consid-erable need for a larger, more comprehensive study of pain behaviors and consequences in peo-ple with autism. It is also important to note that the laboratory approaches used above are based on a rather artificial context in which to experience pain. These studies rely on participants actively attending to a pain stimulus within a sterile med-ical or laboratory context with

actively attending to a pain stimulus within a sterile med-ical or laboratory context with no clear motiva-tional, emotional, social, or cognitive state. This is not how people typically experience pain in their environment where pain might be competing for attention with daily tasks/interests and associated with emotional states and concerns over health and recovery. It is therefore important that we consider issues surrounding pain in daily context and how this might be experienced.

that we consider issues surrounding pain in daily context and how this might be experienced. Understanding of the role of other psychiatric or emotional contributions to pain in ASD is needed. Presently, research has established that the magnitude of pain reactivity in ASD during injection and dental procedures is predicted by depression and anxiety (Garcia-Villamisar et al. 2019). This effect mirrors work in neurotypical populations and suggests that people with greater anxiety and depression

work in neurotypical populations and suggests that people with greater anxiety and depression experience greater pain and also suggests that factors related to pain in ASD may be similar to the general population. The role of anxiety in pain experience in ASD is an important issue, as anxiety has been shown to be highly prevalent in ASD (see the entries ▶“Anxiety”, ▶“Anxiety Disorders”, and ▶“Generalized Anxiety Disorder” for more infor-mation about anxiety).

Further data also suggests that reduced thermal pain sensitivity may relate to IQ, suggesting that those with lower IQ scores also report higher pain thresholds (Duerden et al. 2014). It is however important to note here that the methods used to determine pain thresholds in this study are based on a reaction time-sensitive measure, and therefore slower motor or general processing speed may also result in greater reported thresholds (Williams et al. 2019). Intriguingly, these are also

may also result in greater reported thresholds (Williams et al. 2019). Intriguingly, these are also suggestions that greater reductions in pain behavior may be associ-ated with more severe ASD symptoms. One of the most frequently discussed issues related to pain processing in ASD is that of self-injurious behaviors (for more information about self-injurious behaviors, see the entry ▶“Self-Injurious Behavior (SIB)”). A prevalent early opinion was that self-injurious behaviors were a sign of

Behavior (SIB)”). A prevalent early opinion was that self-injurious behaviors were a sign of reduced pain sensitivity. Opinions have however changed in recent years, with obser-vations that individuals with ASD may engage in self-injurious behaviors following potentially painful episodes suggesting that this might be a coping mechanisms to deal with pain. The role of self-injurious behaviors in pain experience and expression is however still unclear in ASD. Understanding pain perception,

in pain experience and expression is however still unclear in ASD. Understanding pain perception, experience, and expression in ASD is of critical importance. The presence of pain-related comorbidities, uncertainty regarding pain responsivity, and communication difficulties that limit the reliabil-ity of standard pain assessments makes the prob-lem of pain management in ASD difficult and urgent. Additionally, there are reported case stud-ies showing that traditional analgesic approaches may not

there are reported case stud-ies showing that traditional analgesic approaches may not be as effective in some patients with ASD and that prescribing practices may differ in ASD. Yet, there are many other non-pharmacological options for pain management in neurotypical populations. Future work is needed to identify best pain assessment and management strategies in ASD.

Pakistan and Autism Pakistan is situated in South Asia, and with a population of about 210 million, it is the sixth most populous country in the world. Almost 35% of this population is under the age of 14 years. As is true for other Asian countries, the child and adolescent psychiatry services in Pakistan, including the services for autism and other developmental disabilities, are significantly lagging in comparison to its Western peers. There are few general psychiatry departments in major

lagging in comparison to its Western peers. There are few general psychiatry departments in major cities of Karachi, Lahore, Rawalpindi, Islamabad, Faisalabad, Multan, Peshawar, and Quetta; however, because of limited resources, their outreach services to rural areas are almost nonex-istent, and it is in rural areas where nearly two-thirds of the country’s population resides. The situation of divisions of child and adolescent psychiatry is bleaker as there are only a handful of child

of divisions of child and adolescent psychiatry is bleaker as there are only a handful of child psychiatrists and very few training sites in the country. At present, there is only one inpatient child and adolescent psychiatry unit in Pakistan, which was established in 2012 at King Edward Medical University/Mayo Hospital in Lahore (Imran and Azeem 2014).

Current Status Autism spectrum disorder is an evolving concept (Nazeer et al. 2019), and the current prevalence of autism spectrum disorder (ASD) in Pakistan is unknown. Because of the lack of integrated services, various health professionals, including child psychi-atrists, general psychiatrists, neurologists, psychol-ogists, pediatricians, and speech and language therapists, find themselves to be the first-line pro-viders for this population and to make the diagnosis of autism. Because of the

be the first-line pro-viders for this population and to make the diagnosis of autism. Because of the lack of any formal training for the above wide array of health care providers, no standardized screening tools for ASD are used in most practices. Along with these professionals, there are also strong cultural beliefs in getting treat-ment from traditional healers, who also sees a bulk of children with autism and other developmental disabilities. Current literature has reveals a low level of

with autism and other developmental disabilities. Current literature has reveals a low level of awareness and knowledge of ASD among healthcare workers and school teachers (Imran et al. 2011; Rahbar et al. 2011; Farooq et al. 2018). Var-ious misbeliefs and misconceptions were found in these surveys regarding causes, diagnosis, and treat-ment interventions for autism. In the above landscape, there are few glimmers of light as there are very few schools that are promoting the cause of adequate

are few glimmers of light as there are very few schools that are promoting the cause of adequate mental health for children and are providing specialized pro-grams for this population. One of the earliest established schools in this regard is “Amin Maktab School” in Lahore, the second-largest city of Pakistan. Amin Maktab School was established in 1962, and by 1991, this institution was successful in building outreach programs for underserved areas of Lahore.

With the increased use of social media, increased literacy rate, and parental advocacy, different institutions are taking a more proactive role in serving this population. Children’s Hospital, Lahore is one such example, which, as a tertiary care pediatric hospital, has developed a well-established program for autism and provides diagnostic and therapeutic services. Dow Univer-sity in Karachi has also started an autism program in 2013. Sindh Provincial Government has also taken the lead in

has also started an autism program in 2013. Sindh Provincial Government has also taken the lead in establishing the Center for Autism Rehabilitation and Training-Sindh (C-ARTS) in 2018. This center provides a wide array of comprehensive services for children with autism spectrum disorder in the largest city of Pakistan. There are limited subspecialty training pro-grams in the country, and at present, only one private teaching institute, Agha Khan University, Karachi, Sindh, is providing

at present, only one private teaching institute, Agha Khan University, Karachi, Sindh, is providing subspecialty training in child and adolescent (CAP) psychiatry in the country. To further the status of subspecialty train-ing in this field, the College of Physicians and Surgeons Pakistan (CPSP) has recently approved a CAP fellowship of their own, which is based on the United States model of 2 years subspecialty training after finishing postgraduation in general psychiatry. Various individuals

subspecialty training after finishing postgraduation in general psychiatry. Various individuals have played a key part in developing this fellowship from Pakistan, United Kingdom, and the USA including Prof. Mowadat Rana, Prof. Fareed Minhas, Dr. Nazish Imran, Dr. Ayesha Mian, Dr. Ayesha Minhas, Dr. Ayesha Sarwat, Prof. Atif Rehman, Dr. Dorothy Stubbe, and Prof. Muhammad Waqar Azeem. Once started, this fellowship will fill the much-needed gap in the training of child psychiatrists with adequate

this fellowship will fill the much-needed gap in the training of child psychiatrists with adequate knowledge of autism spectrum disorder and developmental disabilities. In recent years, various parental groups have also played an important part in educating and supporting the families of children with autism spectrum disorder. The most well-known group in this regard is “Pakistan Autism Meet up,” which was established by one of the parents, Ms. Saira Salman, in 2003. This support group currently

was established by one of the parents, Ms. Saira Salman, in 2003. This support group currently has hundreds of members across the country and around the world, including parents and health care professionals. This group was started in the city of Karachi and now has branches in Lahore, Rawalpindi/Islamabad, and Quetta, as well as an active online forum. Ms. Irum Rizwan and another volunteer, Mr. Qazi Fazli Azeem, along with sev-eral parents and volunteers, have played a consid-erable part in

Qazi Fazli Azeem, along with sev-eral parents and volunteers, have played a consid-erable part in the ongoing success of this group as well as leading the advocacy efforts around the country. This group meets regularly and is instru-mental in the support and services for ASD in Pakistan. Various nongovernmental organizations (NGOs) like Autism Spectrum Disorders Welfare Trust (a project of Mahvish & Jahangir Siddiqui Foundation with Ramaq Center for Awareness and Social Responsibility) are

& Jahangir Siddiqui Foundation with Ramaq Center for Awareness and Social Responsibility) are working to improve awareness regarding ASD all over Pakistan.

Future Directions Unavailability of mental health law is an area in which Pakistan has not made much progress. At present, there are no federal laws related to services and education for individuals with autism and developmental disabilities. Sindh Empower-ment of “Persons with Disabilities” Act, 2018, is perhaps the only such law at a provincial level, which specifically mention Autism as well as other neurodevelopmental disorders. As noted above, there is much need for the establishment of a

other neurodevelopmental disorders. As noted above, there is much need for the establishment of a basic framework and integrated services for this population in need. This is why it is important for the public and private sector to join hands in providing comprehensive diagnos-tic, treatment, educational, and support services for these children and families in most need across the country. Authors believe that if we come together, the future is bright.

Palestine and Autism Since the end of the British mandate over Pales-tine in 1948 and the creation of Israel, the region has witnessed continuing territorial disputes, pro-tracted violence, and political instability between the Arab Palestinians and the Israeli Jews. After the Oslo Accord signed in Washington, DC, in 1993, the Palestinian Authority was installed in the West Bank and Gaza Strip in a yet complicated peace process envisaging a two-state solution. Today, Palestine is a

Strip in a yet complicated peace process envisaging a two-state solution. Today, Palestine is a nonsovereign state that has been accepted as the 195th Member State by the United Nations Educational, Scientific and Cultural Organization (UNESCO) in 2011 (UNESCO 2011). Palestine still holds a non-member observer state in the United Nations. The West Bank of Palestine is a landlocked area surrounded by Israel and bordered to the East by the Hashemite Kingdom of Jordan, while the Gaza Strip is 25

by Israel and bordered to the East by the Hashemite Kingdom of Jordan, while the Gaza Strip is 25 miles long and 4–5 miles wide land bounded by Israel and Egypt. The majority of the West Bank is controlled by Israel and a block-ade has been in place since long limiting entry to and exit of Palestinians from the Gaza Strip. There are nearly 3 million Palestinians living in the West Bank and about 1.85 million living in the Gaza Strip. Attention to autism spectrum disorders (ASDs) in Palestine

1.85 million living in the Gaza Strip. Attention to autism spectrum disorders (ASDs) in Palestine has increased recently. This could be attributed to the increasing exposure to mass media, in part, and to the disseminated research carried out in the region and elsewhere around the world (Ashbee 2016; Dababnah and Bulson 2015; Dababnah and Parish 2013). This might have led to increasing the awareness of both healthcare professionals as well as laypersons on the issue of ASDs (Basha 2014).

awareness of both healthcare professionals as well as laypersons on the issue of ASDs (Basha 2014). Tracking down the history of ASDs in this particular region of the world would be a difficult task in the absence of disseminated case reports. In addition, the inci-dence and prevalence of ASDs in Palestine are still unknown due to the absence of large epide-miological studies carried out for these objectives. Furthermore, Palestinian refugees in neighboring countries were excluded from studies

objectives. Furthermore, Palestinian refugees in neighboring countries were excluded from studies conducted to determine the prevalence of ASDs, notably the one conducted in Lebanon although the number of Palestinian refugees in Lebanon regis-tered by the United Nations Relief and Works Agency for Palestine Refugees in 2010 was approximately 440,000 (Chaaya et al. 2016). Recently, there have been calls to prioritize research needs in mental health in Gaza Strip and ASDs were among these

been calls to prioritize research needs in mental health in Gaza Strip and ASDs were among these priorities (Abu-El-Noor and Aljeesh 2014).

Probably, light was shed on ASDs when the Palestinian Bureau of Statistics has conducted its first specialized national disability survey in 2011 which included ASDs within the category of “learning difficulties” when the Palestinian Cen-tral Bureau of Statistics has conducted its first specialized national disability survey in 2011 which included ASDs within the category of “learning difficulties” (PCBS 2011). Prior to this disability survey, the Child Statistics survey made no mention of ASDs.

(PCBS 2011). Prior to this disability survey, the Child Statistics survey made no mention of ASDs. However, next year (2012), the Child Statistics survey alluded to ASDs which were included within “learning disability/diffi-culty” (Ashbee 2016; PCBS 2012). Another light shedding event was the organization of the first conference related to ASDs which was held in April 2012 in Bethlehem to coincide with the World Autism Day (Ashbee 2016). The confer-ence was well attended and policies were

with the World Autism Day (Ashbee 2016). The confer-ence was well attended and policies were discussed. In April 2016, the An-Najah Child Institute of An-Najah National University took a next step and held another conference on “Autism Spectrum Disorder, Evidence Based Practices in Palestine.” In Palestine, there are four main providers of healthcare to the Palestinians. These providers are: (a) the Ministry of Health (the public sector), (b) the private sector, (c) nongovernmental

are: (a) the Ministry of Health (the public sector), (b) the private sector, (c) nongovernmental orga-nizations (NGOs), and (d) refugee services oper-ated by the United Nations Relief and Works Agency (UNRWA). NGOs provide many services including psychosocial support and rehabilitation for physical as well as mental disabilities. Utiliza-tion of the services provided by the NGOs accounts for 11% of the overall healthcare utiliza-tion in the West Bank (World Bank 2006). In spite of the reported

of the overall healthcare utiliza-tion in the West Bank (World Bank 2006). In spite of the reported dearth of services for children with ASDs in Palestine, some not-for-profit and NGOs provide services to individuals with intellectual disability and ASDs. An-Najah National University, which is the largest university in Palestine, has established An-Najah Child Institute in 2013. This institute provides clinical, training, and research services related to ASDs. A comprehensive and

institute provides clinical, training, and research services related to ASDs. A comprehensive and multi-disciplinary assessment approach is applied for the diagnosis of ASDs at this institute using inter-nationally accepted tools which were translated into Arabic, adapted to culture, tested, and for-mally validated in Palestine. Currently, there is a kindergarten catering to the needs of children with ASDs. Once admitted, children are assessed, monitored, and individualized educational and

with ASDs. Once admitted, children are assessed, monitored, and individualized educational and skills acquiring plans are made for every child. Children with ASDs are grouped in small groups, each group of about five children and children with high functioning ASDs are later included in classes with the mainstream educational programs along with other children without ASDs. The institute has many research initiatives and plans to use evidence-based practice in catering to the needs of children

research initiatives and plans to use evidence-based practice in catering to the needs of children with ASDs.

The Jerusalem Princess Basma Centre for Dis-abled Children was established in 1965 initially as a home for children with physical disabilities. Later the center was opened to include both chil-dren with disabilities and those without disabil-ities. Today, the center offers services related to physical therapy, occupational therapy, speech therapy, and special education. Since 2011, the center offers services to children with ASDs (Jerusalem Princess Basma Centre for Disabled Children 2017).

offers services to children with ASDs (Jerusalem Princess Basma Centre for Disabled Children 2017). The center is unique in the Pales-tinian context. The staff at the center are well-resourced and trained in approaches for working with children with ASDs. The staff includes teachers and occupational and speech therapists. Unfortunately, Palestinians in the West Bank face difficulties accessing and utilizing the ser-vices offered at this center as it is located in East Jerusalem. Palestinians

and utilizing the ser-vices offered at this center as it is located in East Jerusalem. Palestinians need to obtain a travel permit (a laissez-passé) from the Israeli authorities to enter Jerusalem. For Palestinians of the Gaza Strip, it is nearly impossible to utilize the services of the center as they are restricted to travel to Jerusalem by Israel (Dababnah and Bulson 2015). Other centers catering to the needs of children with ASDs in Palestine include the Star Mountain Center which was

catering to the needs of children with ASDs in Palestine include the Star Mountain Center which was started as a hospital and now offers services and cater to the needs of children with low-functioning ASDs and intellectual disabilities (Star Mountain 2017). Parents of chil-dren with ASDs established a community-based program known as Friends of Autistic Children Society (Friends of Autistic Children Society 2017). This center was established particularly for children with ASDs. Families of

Society 2017). This center was established particularly for children with ASDs. Families of children with ASDs are closely involved. No formal training was provided to the staff; instead, they turned to the internet to seek guidance (Ashbee 2016). Although the number of projects and programs that cater to the special educational needs of indi-viduals with physical, intellectual, and learning disabilities ran by not-for-profit organizations and NGOs has grown, many parents questioned the quality

ran by not-for-profit organizations and NGOs has grown, many parents questioned the quality of the services provided and claimed the costs were unaffordable to a considerable per-centage of those interviewed (Dababnah and Bulson 2015; Dababnah and Parish 2013; Nasir-Tucktuck et al. 2017).

Rigorous data on to the quality of screening, diagnosis, therapy, and other services available and accessible to individ-uals with ASDs in Palestine are still needed (Dababnah and Bulson 2015). In best practice, diagnosis of ASDs requires a comprehensive assessment which is carried out with the help of a multidisciplinary team using formally validated tools. Recent studies reported healthcare profes-sionals lacking awareness and knowledge of ASDs (Dababnah and Bulson 2015; Dababnah and Parish

lacking awareness and knowledge of ASDs (Dababnah and Bulson 2015; Dababnah and Parish 2013; Shawahna et al. 2017). In many cases, parents of children with ASDs reported noticing signs and symptoms of ASDs on their children before pediatricians. Parents also reported that pediatricians did not use any formal screening tools. Parents of children suspected of having ASDs struggle finding healthcare profes-sionals trained to perform the diagnosis. Receiv-ing inaccurate diagnosis and information on

profes-sionals trained to perform the diagnosis. Receiv-ing inaccurate diagnosis and information on ASDs and being recommended to use treatments without a solid evidence for effectiveness have also been reported (Dababnah and Bulson 2015). Traveling outside the country is a common practice by Palestinians seeking diagnosis and/or treatments of disorders including ASDs (Dababnah and Bulson 2015; Habash and Fteiha 2015). Obtaining a referral from the Palestinian Ministry of Health and a travel

Habash and Fteiha 2015). Obtaining a referral from the Palestinian Ministry of Health and a travel permit (a laissez-passé) from the Israeli authorities is often required for Palestinians to be allowed to visit Israeli hos-pitals and healthcare centers. Palestinians also often seek diagnosis and/or treatment in Jordan. Al Jabery and colleagues reported services includ-ing physical, occupational, and speech therapies available for individuals with ASDs in Jordan (Jabery et al. 2014). They also

and speech therapies available for individuals with ASDs in Jordan (Jabery et al. 2014). They also reported treatment services using hyperbaric oxygen and special nutritional plans. Extensive barriers to utilizing these services were reported, most notably, the cost. Geographic and political barriers also exist. Parents also reported challenges related to checkpoints and transportation limiting their access and utilization of services related to ASDs. Beyond cost and geographic and political

their access and utilization of services related to ASDs. Beyond cost and geographic and political barriers, individuals with ASDs and their families often face a heavy burden of social and cultural barriers to access and utilize services pertaining to ASDs (Dababnah and Bulson 2015).

Legal Issues, Mandates for Service The passage, in 1998, of the Right of Education for All law by the Palestinian Authorities led to reforms in teacher training programs and educa-tional facilities to accommodate the different needs of students, including those with disabilities (Palestinian Ministry of Education 2000). Prior to this law, schools did not cater to the needs of school children with physical, intellectual, and/or learning disabilities (Nasir-Tucktuck et al. 2017). Following the

physical, intellectual, and/or learning disabilities (Nasir-Tucktuck et al. 2017). Following the passage of this law, progress has been witnessed in regards to changing the atti-tudes and perception of providing equitable edu-cation to school children with disabilities. In the last two decades, many grant-funded teacher train-ing projects have been administered in the Pales-tinian territories and many new schools accepted students with learning disabilities and mild dis-abilities. Despite these

many new schools accepted students with learning disabilities and mild dis-abilities. Despite these efforts of inclusion, unfor-tunately many children with disabilities in Palestine skip education. According the Palestin-ian Central Bureau of Statistics, more than 1 out of 3 people with disabilities aged 15 and above had never been enrolled in any educational system and out of those who did enroll, nearly 1 out of 5 dropped out as a result of their disabilities (Ashbee 2016; PCBS 2011).

enroll, nearly 1 out of 5 dropped out as a result of their disabilities (Ashbee 2016; PCBS 2011). Financial assistance to individuals with ASDs and their families is limited. In Palestine, any person with disability is eligible to apply for support from the Ministry of Social Affairs. Eligi-bility for financial support is decided following an extensive scrutiny. Support consists of an amount equivalent to about $215 every 3 months. This amount is hardly enough to cover the cost of diagnosis of

to about $215 every 3 months. This amount is hardly enough to cover the cost of diagnosis of ASDs. Financial restrains related to caring for children with ASDs in regard to treat-ment, vitamins, tests, diapers, costly specialty items, speech therapy were reported by parents (Dababnah and Bulson 2015).

Overview of Current Treatments and Centers Despite the dearth of services offered to individuals with ASDs in Palestine, the number of centers offering services to individuals with ASDs has grown recently. Some centers are striving to apply evidence-based approaches. Currently, the national mental health thematic group is developing the national policy for the diagnosis and treatment of ASDs. The policy was recently drafted and the formal approval is underway. Initiatives by parents and

The policy was recently drafted and the formal approval is underway. Initiatives by parents and community-based programs have started and probably would be growing in the near future. Ambitious plans have been envisaged to create a village for individuals with ASDs (Ashbee 2016). However, these plans are beyond realization in the near future due to lack of funds and governmental support. Probably, this has come after the growing awareness of the importance of exposure to peers and acquiring of

this has come after the growing awareness of the importance of exposure to peers and acquiring of social skills.

Overview of Research Directions Unfortunately, research programs are underdevel-oped. Recently, some qualitative studies reported access to ASDs-related services as well as parents’ perspectives of raising children with ASDs (Dababnah and Bulson 2015; Dababnah and Parish 2013). Another study investigated the awareness and knowledge of pharmacists on ASDs (Shawahna et al. 2017). A study investi-gated a possible link between iron deficiency and ASDs (Al-Ali et al. 2015). Another study sequenced

a possible link between iron deficiency and ASDs (Al-Ali et al. 2015). Another study sequenced whole exome and revealed complex inheritance patters and identified two gene muta-tions implicated in ASDs and intellectual disabil-ity (Khalaf-Nazzal et al. 2016). Large clinical trials are completely absent in Palestine as laws prohibited conduction of such trials. Recently, a law was passed which permits the conduction of clinical trials in Palestine. The passage of this law would probably open new

the conduction of clinical trials in Palestine. The passage of this law would probably open new avenues for therapeutic interventions and research. Obviously, there is a dearth of interven-tional research in Palestine.

Overview of Training The importance of training teachers to cater to the needs of children with ASDs has recently been recognized (Ashbee 2016). The Palestinian Min-istry of Education has promised more commitment to develop in the field of education for children with ASDs. Resource rooms have been established in some schools to support children with additional needs. Some schools like the Friends school in Ramallah are including pupils with ASDs in the mainstream environment. The Jerusalem

school in Ramallah are including pupils with ASDs in the mainstream environment. The Jerusalem Princess Basma Centre for Disabled Children offers train-ing to professionals in the West Bank in a trial to share experience and transfer know-how to their peers. More efforts are needed to accelerate the formal approval of the national policy for the diag-nosis and treatment of ASDs and setting healthcare agenda in relation to ASDs.

Social Policies and Current Controversies In a survey conducted in the West Bank by the Palestinian Central Bureau of Statistics, 1.6% of children aged 0–17 years were reported to have either physical or intellectual disability (PCBS 2011). It is important to mention that disabilities in the region are underreported and therefore, these figures should be interpreted with caution. Families with individuals with ASDs were reported to hide their afflicted siblings (Ashbee 2016). Unfortunately,

individuals with ASDs were reported to hide their afflicted siblings (Ashbee 2016). Unfortunately, there is stigma in regards to individuals with disabilities in general. Social stigma and discrimination were reported by par-ents of children with ASDs (Dababnah and Bulson 2015; Dababnah and Parish 2013). Denial, depres-sive symptoms, poor coping, social isolation, and increased burden on siblings were also reported by parents of children with ASDs (Dababnah and Bulson 2015; Dababnah and Parish

were also reported by parents of children with ASDs (Dababnah and Bulson 2015; Dababnah and Parish 2013). Parents were able to cope with these challenges by reli-gious practices, social support, and access to infor-mation. Fortunately, there is a growing body of information freely available on the internet that parents can access and learn about ASDs. In Arabic speaking regions, words to denote disability are reported to be derogatory and pejora-tive. They are also used to swear. It is not

disability are reported to be derogatory and pejora-tive. They are also used to swear. It is not uncommon for families to hide their children with disabilities fearing that the community will reject them. A report by the Palestinian Central Bureau of Statistics on children and disability found that there is a tendency to blame the mother for her child’s perceived disability (PCBS 2012). ASDs were often blamed as a “punishment from god.” Recently surveyed pharmacist lacked adequate awareness and

often blamed as a “punishment from god.” Recently surveyed pharmacist lacked adequate awareness and knowledge of and believed in myths in regard to ASDs (Shawahna et al. 2017). Interestingly, today there is a louder parent voices demanding better governmental services for their children with ASDs. Increasing aware-ness and education might have an impact on reducing stigma and dispelling myths about indi-viduals with ASDs.

Palliative Care The oldest cohort of adults with autism spectrum disorders (ASD) is aging, but little has been done to prepare for their end-of-life needs. A review of the literature does not reveal a substantial body of work on end-of-life care for adults with ASD. The purpose of this entry is to introduce caregivers and general clinicians who care for adults with autism to some of the unique challenges of palliative care in this population. It is also intended to familiarize palliative care

of palliative care in this population. It is also intended to familiarize palliative care specialists with some of the unique features of ASD. There is tremendous variability in an autism spectrum that encompasses nearly every degree of functioning, but some issues in palliative care will be applicable to broad subpopulations of those with ASD. Obstacles related to patient autonomy will include communication challenges, deci-sional incapacity, and surrogate decision-making. First, some

communication challenges, deci-sional incapacity, and surrogate decision-making. First, some subgroups with ASD will express preferences and clinical guidance in atypical ways, and these communication mismatches can create challenges trying to manage pain and suf-fering in ways concordant with patients’ wishes. Second, fear of dying, pain, and worry about an uncertain future are discomforting in palliative care, generally, but may be exacerbated by fea-tures of autism that can lend themselves

palliative care, generally, but may be exacerbated by fea-tures of autism that can lend themselves to a patients’ isolation, confusion, or incomplete com-prehension of what is going on around them. Broader issues will arise including the intertwined questions of decision-making capacity and surro-gate decision-making. Some elderly adults with ASD will have full capacity to communicate long-term care plans, sign advance directives, and des-ignate potential surrogates, while others will be able

care plans, sign advance directives, and des-ignate potential surrogates, while others will be able to do so only in a limited or attenuated man-ner. In these cases, surrogates will play integral roles in decision-making by augmenting and extending patients’ self-determination; they will frequently be family members who have provided care for many years and now face new tasks that include shouldering the burden of surrogate decision-making at the end of life. These challenges, and many further

the burden of surrogate decision-making at the end of life. These challenges, and many further unfamiliar ones, will arise when elderly adults with autism enter palliative care settings. When these chal-lenges do occur, strong psychosocial support and collaboration between caregivers, patients, and families will increase quality of life by ascertaining the preferences and goals of care of adults with ASD, thereby enhancing autonomy.

Historical Background Palliative Care Palliative care aims to improve quality of life for patients with serious or terminal illness and focuses on family-centered care designed to relieve suffering and increase comfort. Palliative care originated in the modern hospice movement pioneered in 1967 by Dame Cicely Saunders (Fins 2006) and is initiated when “cure is no longer the prevailing goal of care” (Fins 2006). Comprehen-sive strategies for palliative care cover multiple domains of care,

of care” (Fins 2006). Comprehen-sive strategies for palliative care cover multiple domains of care, including physical, emotional, social, intellectual, and cultural needs. These domains can be addressed by interdisciplinary care teams that provide multidimensional man-agement of symptoms; social, spiritual, cultural, and psychological support as ways of providing comfort and relief; and clear channels of commu-nication between providers and families in order to provide support, acknowledge

channels of commu-nication between providers and families in order to provide support, acknowledge sensitive legal and regulatory issues, and resolve complex ethical challenges (The National Consensus Project on Quality Palliative Care 2013). The domains of palliative care can be weighted differently. Some strategies of care “focus more comprehensively on the technical aspects of end-of-life care, such as drug dosing or the man-agement of common symptomology” (Fins 2006). Other models emphasize

such as drug dosing or the man-agement of common symptomology” (Fins 2006). Other models emphasize the humanistic approach: a person-centered, shared-understanding model in which patients and physicians collaborate to understand disease trajectory and articulate goals about quality of life, intentions of care, and resolu-tion of end-of-life issues (Fins 2006; Friedman et al. 2010). Humanistic models of palliative care aim to increase quality of life while keeping patient autonomy in the

models of palliative care aim to increase quality of life while keeping patient autonomy in the foreground. As palliative care involves numerous decisions by patients and families, palliative care organiza-tions seek to enhance access to information and choice. Short-term decisions include treatment preferences such as specifics of comfort care and pain management, location of care (e.g., hospital, hospice, or a patient’s home), and which family members are wanted close at hand. Longer-term

hospice, or a patient’s home), and which family members are wanted close at hand. Longer-term decisions dictate preferences that reflect the over-arching values of the patient and how they want those values to guide or shape critical moments at the end of life. These include passive approaches to care, such as withdrawal of artificial nutrition and signing “Do Not Resuscitate” (DNR) forms, and active strategies including aggressive inter-ventional treatment. Ideally, these decisions develop

active strategies including aggressive inter-ventional treatment. Ideally, these decisions develop through ongoing conversations among patients, families, and providers, in which values are articulated and expectations refined. After these conversations are completed, important pro-cedures codify preferences into legally binding terms and documents, such as advance care plans that designate proxy decision-makers and treatment preferences in the event of decisional incapacity.

Adults with Autism Spectrum Disorders Autism is a persistent developmental disorder with impairments in two broad categories: social communication and social interaction. Often diag-nosed early in life, individuals typically exhibit restricted, repetitive patterns of behavior, inter-ests, or activities (American Psychiatric Associa-tion 2013). First identified in 1943 by pediatric psychiatrist Leo Kanner (1968), public awareness of autism increased during the 1950s and 1960s through

Leo Kanner (1968), public awareness of autism increased during the 1950s and 1960s through now-discredited theories about “refrigerator mothers” as a cause, and diagnostic recognition expanded further with formal codification of autism in the 1980 publication of the DSM-III. Given this timeline, the oldest adults to receive a formal diagnosis of autism are in their late 50s, 60s, and early 70s. In many cases they have lived most of their lives with family or in supervised group homes.

Recent focus has been on early detection and early intervention in autism. Presently, children are diagnosed on average several years earlier than their counterparts 60 years ago, which allows for a greater amount of early intensive behavioral therapy during critical developmental periods (Howlin et al. 2014). However, this focus on early intervention has led to inadvertent neglect of adult and lifespan perspectives of older individuals with ASD: “We know next to nothing about people aging

lifespan perspectives of older individuals with ASD: “We know next to nothing about people aging with ASD. There are. . .no data on the quality of life of the elderly with ASD” (Fombonne 2012). Emphasis on childhood autism has left gaps in care and services for adults with ASD. Elderly adults with autism will face challenges that are extensions of childhood difficulties, as well as obstacles that are novel to old age. First, the core features of classical childhood autism extend into and take on

novel to old age. First, the core features of classical childhood autism extend into and take on new forms during adult-hood. Children with autism who have modest or higher IQ ( 70) in childhood remain relatively cognitively stable into adulthood (Seltzer et al. 2004). Some adults with autism are able to improve in their social and verbal skills and attain more stable social roles throughout adulthood, but this has been proposed to occur in a “splinter” fashion, with progress in discrete skills

but this has been proposed to occur in a “splinter” fashion, with progress in discrete skills rather than improvement across the board (Seltzer and Shattuck 2003). Second, social interaction and communication deficits tend to lead to difficulties later in life in employment, independent living, and relationships and trouble with law enforce-ment for adolescents and adults with ASD (Volkmar et al. 2014), many of whom present with disadvantaged physical or mental health and overall quality of life

many of whom present with disadvantaged physical or mental health and overall quality of life as a result (Howlin and Moss 2012). As a result, 60–75% of individuals with autism have “poor” or “very poor” outcomes as adults (Seltzer et al. 2004; Howlin et al. 2014), but these tendencies vary based on the degree of early impairment, family support, and access to services. Trends in outcomes are likely more acute, i.e., a downward shift in function, in older generations of adults with ASD who have

more acute, i.e., a downward shift in function, in older generations of adults with ASD who have missed key therapeutic interventions that are now stan-dard practice. As diagnostic recognition has improved over time, the number of adults formally diagnosed with autism is expected to grow progressively larger. However, the prevalence of formal diagno-ses likely underestimates the true rate of autism. The first comprehensive study to include undiagnosed adults found a relatively static rate of

The first comprehensive study to include undiagnosed adults found a relatively static rate of autism over time in the UK: 1.1% of 16- to 44-year-olds, 0.9% of 45- to 74-year-olds, and 0.8% of those 75-year-olds, roughly the same prevalence as the childhood population (Brugha et al. 2011). In many cases undiagnosed individ-uals with ASD were socially disadvantaged and unrecognized and did not access services.

Palliative Care Plans and Challenges The first group of adults with a formal diagnosis of autism is nearing the age when they might receive end-of-life palliative care. Features of autism vary in presentation among individuals, so it is imperative to distinguish between individ-uals who are capable of articulating their vision for care procedures, those who will need support to do so, and those who might be cognitively incapable of doing so altogether. Providers should respond differently to

who might be cognitively incapable of doing so altogether. Providers should respond differently to these groups, tailoring their care, presence, and interactions to enhance self-determination and the quality of life of adults with ASD receiving palliative care. As palliative care is a collaborative endeavor, providers can draw on various resources. The adult patient – the focus of care – has wishes, needs, and goals of care to be articulated. Family members and caregivers can be consulted as

needs, and goals of care to be articulated. Family members and caregivers can be consulted as doing so can enhance the patient’s communicative capacity and ability to make informed choices. There are also legal and ethical perspectives to take into account. It is in the spirit of palliative care to collaboratively address obstacles through open communication that involves all relevant parties in processes of decision-making and end-of-life choice.

Communication Differences Communication is a prerequisite for choice and preference setting in palliative contexts. However, some adults with autism are unable to clearly articulate preferences and overarching values, which is an obstacle for palliative care personnel seeking to provide care in accordance with patients’ wishes. There is wide variation in verbal acumen of adults with ASD, reflecting the full breadth of the autism spectrum. By adulthood, many of those with partially or fully

the full breadth of the autism spectrum. By adulthood, many of those with partially or fully nonverbal autism will have identified noncanonical strategies for augmenting dialectical communication.

Helpful strategies may include augmentative and alternative com-munication technologies (AAT) (Beukelman and Mirenda 2013), sign languages, physical or behavioral communication, facilitated communi-cation, and visual communication such as PECS (Picture Exchange Communication System) (Dawson and Burner 2011). These mediums are used at different rates: 40% of people with ASD use sign language, 26% use a high-tech assistive device (e.g., voice output system), 40% use a low-tech assistive device

use a high-tech assistive device (e.g., voice output system), 40% use a low-tech assistive device (e.g., Picture Exchange Communication System), and 95% reportedly use gestures (many individuals with ASD use more than one mode of assistive communication) (Gotham et al. 2015). These strategies may be adapted for a palliative care context; for example, social stories and books are used to communicate about the deaths of other people (The National Autistic Society: Death, Bereavement, and Autism

about the deaths of other people (The National Autistic Society: Death, Bereavement, and Autism Spectrum Disorders 2015), often older family members, but have not yet been extended to palliative care. Alternative communication techniques will play a crucial role in avoiding communication mismatch between palliative care providers and patients with ASD.

Sensory Integration and Experience of Pain Atypical sensory processing is a common feature of autism. It involves perception of tactile, audi-tory, visual, or painful stimuli as more or less noxious than their true intensity. Hyposensitivity to pain is troublesome in general medical contexts due to underreporting of illness, but hypersensi-tivity to pain is particularly worrisome as a pri-mary goal of palliative care is the relief of terminal pain. Atypical processing of pain can severely

goal of palliative care is the relief of terminal pain. Atypical processing of pain can severely affect quality of life and precipitate anxiety or agitation. In cases of pain hypersensitivity, there may be a need to adjust pharmacotherapy accordingly. However, in cases of pain hypersensitivity, some adults with ASD will express desired strat-egies for pain management, while others will have difficulty with effective communication of inter-nal experience. In the latter case, providers can rely on

with effective communication of inter-nal experience. In the latter case, providers can rely on nonverbal signs of pain and distress. These may include unexplained rises in heart rate and blood pressure or pupillary dilation, all signs of sympathetic overdrive. There are also behavioral observation techniques for assessing pain, such as the Critical Care Pain Observational Tool (Pun and Dunn 2007), which measures behaviors including muscle rigidity, body movements, and facial expressions, and

which measures behaviors including muscle rigidity, body movements, and facial expressions, and the Adult Nonverbal Pain Scale (Rothman 2006), which can be used to assess pain and anxiety in critically ill, nonverbal adults by observing signs such as “stimming” or signs of overstimulation that can include grimacing, moaning, shaking, and hunched walk-ing (Dell 2008). In short, effective terminal pain management for adults with ASD may necessitate awareness of nonverbal and physiological cues,

pain management for adults with ASD may necessitate awareness of nonverbal and physiological cues, nondialectical communication of discomfort, and potentially heightened importance placed on pain relief.

Decisional Capacity and Choice Decisional capacity is the ability one has to make decisions for oneself. Insofar as decision-making relies on functional abilities that can be patholog-ically affected by certain disorders, in many cases it will be important to evaluate whether a patient has robust decisional capacity. Modern capacity evaluations focus on functional abilities-based criteria for capacity, typically the abilities to understand information relevant to a decision, appreciate the

capacity, typically the abilities to understand information relevant to a decision, appreciate the information (i.e., apply it to one’s own situation), reason with the information, and communicate a stable choice (Appelbaum and Grisso 1988). Other models of capacity assess-ment focus on whether the patient’s decision has been made in light of personal beliefs and values (Fins 2006). Several features of decisional capacity are important to note. First, the threshold for capacity can vary

features of decisional capacity are important to note. First, the threshold for capacity can vary depending on the decision at hand. The “sliding scale” model of capacity articulates a threshold that varies depending on the conse-quences of a decision (Drane 1984). Thus, patients may be able to make some decisions but lack capacity for other, riskier ones. For example, a patient’s decision to sign a “Do Not Resuscitate” order should be subject to a stringent evaluation and a high capacity bar,

a “Do Not Resuscitate” order should be subject to a stringent evaluation and a high capacity bar, but that same patients’ preference for some hospital foods over others needs not be questioned in the same way. A second, related point is that capacity “is not a global determination of cognitive abilities” (Fins 2006), rather, it is assessed for each specific deci-sion in question. Thus, incapacity to make one highly complex medical decision should not be equated with incapacity for all decisions.

make one highly complex medical decision should not be equated with incapacity for all decisions. Some adults with ASD will meet functional capacity criteria to make weighty medical deci-sions, while others will not. Particularly those with Asperger’s, high IQ, or higher-functioning autism will have capacity to make medical deci-sions for themselves (Volkmar et al. 2005). Others with lower-functioning autism will lack deci-sional capacity, due in large part to comorbidity between autism and

autism will lack deci-sional capacity, due in large part to comorbidity between autism and intellectual disability that occurs 17–70% of the time (Matson and Shoe-maker 2009). However, even in cases of adults with autism who have severe intellectual disabil-ity such as mental retardation (MR), it will be important to evaluate patients and decisions on a case-by-case basis. “Most adults with mild and no mental retardation, and almost half of adults with moderate MR are able to make and justify

and no mental retardation, and almost half of adults with moderate MR are able to make and justify treat-ment choices and fully or partially understand treatment information” (Cea and Fisher 2003). Additionally, 50% of individuals with mild MR, and 18 % with moderate MR, are able to “partially appreciate relevance of treatment choice to [their] situation and weigh treatment risks against bene-fit” (Cea and Fisher 2003). Communicating with patients about their choices makes end-of-life care

(Cea and Fisher 2003). Communicating with patients about their choices makes end-of-life care better. In palliative care settings, adults with autism should be pre-sented with a full range of decisions including pain management, location of palliative care, and questions of comfort. As there is vast heterogene-ity in ASD, no categorical state of capacity or incapacity will be found in elderly adults with ASD in making palliative care decisions. Some adults with ASD will meet the threshold to

with ASD in making palliative care decisions. Some adults with ASD will meet the threshold to set preferences about comfort care, but not to make a broader decision to withdraw life-sustaining nutri-tion. One method of ascertaining a choice if capac-ity is limited is to present possible options sequentially, such as possible locations of care, then allowing the individual to choose based on experience. When adults with autism have limited decisional capacity, communication between pro-viders,

When adults with autism have limited decisional capacity, communication between pro-viders, the patient, family members, and surrogates will determine which elements of a care plan are best decided by the individual patient and which aspects should be decided by surrogates. Adults with autism face obstacles to self-determination during palliative care. Many will have their decisions questioned or refused due to provider belief that the patient lacks capacity (Institute of Medicine 2006). A

or refused due to provider belief that the patient lacks capacity (Institute of Medicine 2006). A recent study of a Dutch residential facility retrospectively examined the files of 47 individuals with ID who had died during a determined span of time. Twenty-seven of these individuals had an end-of-life decision made about their care, and families were involved in only half of those decisions (Wagemans et al. 2010). There was also “no evidence in the notes that any of the people with IDs was

et al. 2010). There was also “no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision.” Pallia-tive care providers, caretakers, and family mem-bers must ensure that the preferences of adults with autism are taken into account. Another challenge is the possibility of decisional conflict, which can arise among the patient, providers, and surrogates, when a patient with known limited capacity artic-ulates a choice, but it is

and surrogates, when a patient with known limited capacity artic-ulates a choice, but it is unclear whether they have capacity to make this particular decision. Finally, there may be disagreement among various proxies, each with legitimate claims to surrogacy. If this occurs, providers should seek out the legal surro-gate. If none exists, a clinical ethics consult may be requested.

Surrogate Decision-Making Surrogates and healthcare proxies may assume decisional responsibility for a patient who has been determined to have limited capacity or who cannot make independent judgments (Fins 2006). The goal of shared decision-making among surrogates and palliative care teams is to reach decisions balancing the patients’ interests, medi-cal needs, and goals of care. Decisions that surro-gates may be called on to make include cessation of treatment and other difficult, emotionally

surro-gates may be called on to make include cessation of treatment and other difficult, emotionally demanding decisions. Since surrogate decision-making is not a simple task, guidelines (Fins 2006) aid proxy decision-makers in deciding on behalf of others: first, surrogates should make decisions in line with the “expressed wishes” of the patient, i.e., what the patient said they would want if they were ever in this scenario. If no wishes have been shared on the subject, it is appropriate to use

were ever in this scenario. If no wishes have been shared on the subject, it is appropriate to use a “substituted judgment” stan-dard, i.e., how the patient “would have decided” if they were able to do so, which a proxy can deter-mine in light of a patient’s preferences and values. Finally, in the “absence of information” on the patient’s desires, a decision can be made that is in the patients’ “best interest” (Fins 2006). Accu-rate decision-making on behalf of patients is a mechanism that

“best interest” (Fins 2006). Accu-rate decision-making on behalf of patients is a mechanism that helps patients extend their self-determination and autonomy in medical contexts. Surrogates decision-makers for adults with autism will face challenges during palliative care. First, many adults with autism never express choices about palliative care, while others might do so but with suspect capacity. In these cases, a substituted judgment standard is ideal. Second, parents who have served as

In these cases, a substituted judgment standard is ideal. Second, parents who have served as long-term caregivers are often best suited for surrogacy, but may no longer be living. In some of these cases, there will be court-appointed guardians who may be unfa-miliar with the patient. Such guardians should consider that, under a “best interests” standard, the relative weighting of values and interests is unique for some adults with ASD. Even in cases of a long-standing surrogate who knows the

is unique for some adults with ASD. Even in cases of a long-standing surrogate who knows the patient well, deciding for others is a difficult, complex task, and others may have useful input. Family members, caretakers, guardians, group home staff, physicians, therapists, friends, and teachers may have extensive knowledge of the patient’s preferences and can assist in the decision-making process. Finally, when an adult with autism enters palliative care, surrogates may want to discuss potential

Finally, when an adult with autism enters palliative care, surrogates may want to discuss potential issues with the care team and draw up plans in advance, in order to facilitate decision-making during distressing, acute scenar-ios (King et al. 2004). There are also legal hurdles in surrogate decision-making. Conflicting laws, practices, and principles can make it difficult to determine who should be making medical decisions (King et al. 2004). Family members and guardians of adults who have

be making medical decisions (King et al. 2004). Family members and guardians of adults who have autism should always choose durable and valid healthcare proxies and codify these choices in proper documentation that is eas-ily available.

Avoiding Futile Care Not all medical care is good – there are harms of futile care. Medical futility can harm patients by causing unnecessary suffering with no possibility of direct benefit, injure the emotional state of a family, exhaust hospital resources, and put physi-cians in the uncomfortable position of having to provide care they know is ineffective (Fins 2006). Ideally, planning for futility questions takes place before futility questions actually arise and involves conversations

futility questions takes place before futility questions actually arise and involves conversations between families, pallia-tive care teams, and the patient. Futile care decisions involving adults with autism raise at least two major considerations. One concern is that in the case of adults with autism, palliative care providers might worry about stigma of deciding that care is futile for vulnerable individuals, which can therefore lead to overtreatment and greater suffering. A second concern

individuals, which can therefore lead to overtreatment and greater suffering. A second concern is that there may be an implicit presump-tion that adults with ASD and cognitive disabil-ities cannot participate at all in medical decisions, which would rob them of a voice. Obtaining assent and respecting dissent are both important when a patient has less-than-robust capacity. In particular, if pain sensitivity is a known concern for an adult with autism, assent and dissent may be highly

if pain sensitivity is a known concern for an adult with autism, assent and dissent may be highly informative as to treatment preferences and futile care. However, relying heavily on proxies to make decisions involving assent, dissent, and medical futility can place a severe burden on surrogates. Balancing these two considerations will require palliative care providers, families, and patients with ASD to draw up in advance ways of determining the point at which care might be futile for an

with ASD to draw up in advance ways of determining the point at which care might be futile for an individual patient.

Unique Palliative Care Comorbidities Many unique challenges can arise during pallia-tive care for adults with autism. First, several conditions frequently comorbid with adult autism, including anxiety (Bradley et al. 2004), depres-sion (Ghaziuddin et al. 2002), ADHD, and epi-lepsy (Bailey et al. 1998), can create auxiliary complications. Some adults with autism rely on sameness and can be resistant to change, engen-dering anxiety as hospice is an unfamiliar setting, and as novelties such as an

to change, engen-dering anxiety as hospice is an unfamiliar setting, and as novelties such as an array of unfamiliar symptoms, tests, pains, and confusion are associ-ated with many end-of-life scenarios. Anxiety can be mitigated in many ways, such as encouraging adults with autism to participate in the decision-making process regarding location of palliative care. There are also pharmacologic and non-pharmacologic techniques, including distraction, favorite rituals or practices, medication,

and non-pharmacologic techniques, including distraction, favorite rituals or practices, medication, art, and relaxation, that can help reduce anxiety and phys-ical or emotional distress. Second, there is a risk that natural, somatic diseases go unreported among adults with nonverbal autism who are receiving palliative care. Communication deficits can make medical care more difficult or lead to diagnostic delay of various treatable diseases (Sea 2008). Adults with ASD may have increased or

to diagnostic delay of various treatable diseases (Sea 2008). Adults with ASD may have increased or decreased internal sensitivity in addition to sensi-tivity to pain. These factors can make it difficult to assess and treat the secondary health status of adults with autism, especially those who are receiving palliative care focused on a primary condition. Finally, adults with autism – particularly severe or nonverbal ASD – face a heightened risk that their own condition or care will be talked

severe or nonverbal ASD – face a heightened risk that their own condition or care will be talked about in their presence by care providers, with the assump-tion that they do not understand the ongoing dis-cussion. This would negatively affect the quality of life at its end, diminish the overall quality of care received by the patient, and violate principles of confidentiality and respect for persons.

Bereavement Bereavement can come in many forms. Most elderly adults with autism will have experience with some form of death and may feel anticipatory grief, before death.

anticipatory grief may manifest in typical or atypical ways depending on the level of understanding of death and emotional engagement. There might be preconceived notions on the part of the patient of what a good death can or should look like. Palliative care providers should discuss and dissect these expectations, especially if they are inappropriately anticipated. Furthermore, many adults with autism live in group homes. If palliative care takes place in a group home, there is the possibility

live in group homes. If palliative care takes place in a group home, there is the possibility of grief or bereavement affecting other members of the group home, particularly those who observe the progression of care. Finally, in all cases, but perhaps most acutely those in which surrogates make decisions about futile care, providers should expect surrogate bereavement.

### Future Directions As the oldest adults with autism spectrum diagnoses begin to reach the natural end of life and receive palliative care, these adults, their families and surrogates, and healthcare providers will face novel challenges that require flexibility in care and communication. Future research should focus on understanding these challenges, including barriers to decisional capacity, how patients’ capacity can be augmented to increase autonomy, and which issues most frequently arise

patients’ capacity can be augmented to increase autonomy, and which issues most frequently arise during surrogate decision-making. What preferences do elderly adults with ASD express about the end of life, how are those preferences conveyed, and, most importantly, are they followed? Furthermore, how are the decisions surrogates face in palliative care substantively, emotionally, and psychologically different than the medical decisions they make for adults with autism earlier in life? Creative

different than the medical decisions they make for adults with autism earlier in life? Creative research programs are currently lacking and might conceivably be championed by national advocacy programs.

While palliative care has evolved profoundly as a field, further preparation will help care for adults with ASD at the end of their lives. Broad ethical issues can arise in palliative care including respecting preferences ascertained through consent, assent, or dissent so as to avoid under- or overaggressive treatment. Parents of children and adolescents with autism commonly express worry about an uncertain future, particularly when they are no longer able to act as their child’s surrogates.

an uncertain future, particularly when they are no longer able to act as their child’s surrogates. It is critical that parents or guardians, and adults with autism, take the time to have conversations during which values, preferences, and choices about the end of life are ascertained and formally codified to ensure legal authority. This will allow the palliative medical practice to bring its expertise in providing comfort to bear in a way that respects and honors the autonomy, capacity, and

in providing comfort to bear in a way that respects and honors the autonomy, capacity, and choices of an often-vulnerable population (Fins and Pohl 2015).

### Para-educator Karen Meers Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA
 #### Synonyms Aide; Classroom aide; Educational assistant; Instructional assistant; One-to-one; Para; Para-professional; Teacher’s aide; Teaching assistant; Tutor

#### Definition Para-educators are school employees who work directly under the supervision of licensed professionals and who deliver instructional and direct services to students and their families. The licensed professionals, however, maintain responsibility for assessing learner and family needs and for planning, evaluating, and modifying programs. Pickett (1996) was the first to introduce the title para-educator to convey a level of training analogous to paramedic in the medical field and

title para-educator to convey a level of training analogous to paramedic in the medical field and paralegal in the legal field. Historically, para-educators provided assistance with tasks ranging from clerical to individualized living tasks. In the present, they have become a key part of the specialized education team in delivering individualized instruction and services. Para-educators who work with children with autism spectrum disorders (ASD) and other developmental disabilities have

work with children with autism spectrum disorders (ASD) and other developmental disabilities have responsibilities that may include assisting students with instruction; social, emotional, and behavioral skill development; and personal care. Additionally, they may also engage in behavioral data collection and collaboration with other educators (Rossetti and Goessling 2010). National Research Council (2001) lists para-educators as one of the potential resources for providing special services for

(2001) lists para-educators as one of the potential resources for providing special services for children with autism.

### Paralinguistic Communication Assessment Sue Peppé High Appin, Tynron, Thornhill, UK  #### Definition “Paralinguistic communication” has been defined as “not WHAT you say, but THE WAY you say it.” Paralanguage, sometimes known as nonverbal communication, is communication by means other than words, although (usually) operating alongside language. Paralanguage is often impaired in people with autism spectrum disorder, to a lesser or, more often, greater degree than their language. Here,

autism spectrum disorder, to a lesser or, more often, greater degree than their language. Here, prosody (also known as intonation) and voice, which operate in conjunction with speech, are considered. More peripheral aspects of paralanguage would include eye-gaze, body language, and gesture: all often impaired in ASD. “Prosody” is an umbrella term for modulations of the speech stream in terms of its loudness, length, and pitch. These modulations manifest themselves as the relative duration of

its loudness, length, and pitch. These modulations manifest themselves as the relative duration of syllables (determining speech-rhythm and speech-rate), the placing and quantity of stress in words, and changes of pitch (which produce pitch-patterns or contours). These affect the linguistic impact of utterances, conversational interaction, and the verbal punctuation of speech; they also give indications of the speaker’s identity (accent) and attitude to what is said. “Intonation” is another

of the speaker’s identity (accent) and attitude to what is said. “Intonation” is another umbrella term for these modulations, which can also be described as “suprasegmental”: “segmental” refers to the makeup of words in terms of consonants and vowels, and “suprasegmental” to levels which span individual sounds/letters, that is, generalizations that apply to syllables, whole words, phrases, and discourse. “Voice” here denotes vocal quality, and the way this can affect the impact of the spoken

discourse. “Voice” here denotes vocal quality, and the way this can affect the impact of the spoken word; for example, vocal huskiness suggests the imminence of tears and profound sadness in the speaker. Atypical vocal quality has often been noted in people with ASD. “Assessment” refers to methods of gauging ability and the severity of disability. Assessment protocols range from procedures devised on an ad hoc basis for research projects to formal tests. Formal tests assess the degree, usually

on an ad hoc basis for research projects to formal tests. Formal tests assess the degree, usually described in numerical terms, to which a speaker may be impaired on a particular aspect of speech. Such tests may be standardized, that is, provide data from large numbers of unimpaired speakers with which the performance of individual speakers can be compared.

#### Historical Background Although the importance of prosody in speech has long been recognized, it was not until the 1980s that ways of assessing prosodic ability began to develop. Some protocols were devised as parts of investigations into speech impairment in conditions such as dysarthria or aphasia. These procedures were not comprehensive as tests of prosodic ability: They often assessed only a few aspects of prosody, for example, whether stress was placed correctly. Moreover, they

only a few aspects of prosody, for example, whether stress was placed correctly. Moreover, they focused on prosody in speech-production without assessing how well prosody was understood. They usually required transcription: A disadvantage, in that systems for transcribing prosody were (and are still) unsettled, and few people are familiar with them.

David Crystal designed a series of procedures for measuring disability in different aspects of speech and language, one of which concerned prosody: This was known as “Prosody Profile” or “PROP” (Crystal 1982). The PROP sampled spontaneous speech which was prosodically transcribed and scored according to how correctly the prosody was deemed to reflect the speaker’s intentions as to phrasing and conversational interaction. Since then, the PVSP (q.v.) has been devised, on lines similar to PROP in

interaction. Since then, the PVSP (q.v.) has been devised, on lines similar to PROP in that it involves the sampling and transcription of spontaneous speech.

For the assessment of vocal quality, Laver devised the Vocal Profile Analysis (VPA) in the 1980s. This is a technique for assessing laryngeal, phonatory, and articulatory settings. Similarly, the GRBAS (Grade, Roughness, Breathiness, Asthenia, Strain) scale is used for evaluating hoarse voice quality.

There has been an awareness of prosodic and vocal impairment in autism since the earliest descriptions of the condition; in 1943, Leo Kanner, writing about children with autism mentions “a monotonous singsong manner” (Case 7) and a voice “peculiarly unmodulated, hoarse; utters her words in an abrupt manner” (Case 11). He also notes that in the repetitions (echolalia) of what was said to the children he examined “even the intonation is retained.” Hans Asperger, writing in 1944, similarly

children he examined “even the intonation is retained.” Hans Asperger, writing in 1944, similarly observed odd prosody in the children with ASD that he examined.

The work of Christiane Baltaxe in the 1980s was pioneering in that it focused particularly on the assessment of expressive prosody in autism. See “References and Readings,” McCann and Peppé 2003, for a review of articles addressing the issue and a description of assessment methods used. No publication has been made of the findings of the VPA and the GRBAS with speakers with ASD.

#### Current Knowledge There are essentially four tests for assessing prosody and voice: one that assesses both, one devoted to prosody, and two to voice. There are also several other ad hoc procedures that have been used in research papers. Automated assessment is likely to increase: This will involve the collection of large amounts of speech-data which can be scored in increasingly sophisticated ways by computer programs and will thus focus on prosody in speech-production as opposed to

ways by computer programs and will thus focus on prosody in speech-production as opposed to understanding of prosody.

##### Prosody and Voice The Prosody-Voice Screening Profile (PVSP) assesses five suprasegmental speech factors (phrasing, rate, stress, pitch, and loudness) as well as two aspects of voice quality (laryngeality and resonance) in spontaneous speech for their appropriateness. A major study used this test to compare the utterances of young people with ASD and typical development, and found inappropriate resonance and stress placement in the speakers with ASD (see “References and Readings”).

##### Prosody The Profiling Elements of Prosody in Speech-Communication (PEPS-C) test assesses receptive and expressive ability in four functional aspects of prosody as well as auditory discrimination and imitation of prosody. Several studies (see “References and Readings”) have used this test to research prosody in speakers with ASD, and have found impairment in some aspects, for example, the ability to place stress correctly, the use of prosody for conveying affect, and imitation of prosody.

##### Voice Voice quality is assessed by making judgments about vocal sound, using adjectives such as “hoarse” and “husky” to describe it. Little has been done in the way of assessment of vocal quality in autism, and the standard diagnostic reference for ASD does not include vocal characteristics as a marker of ASD. As mentioned above, hoarse vocal quality was noted by Kanner in his first evaluation of autism. Vocal quality is generally taken as a good indicator of a speaker’s emotional and

of autism. Vocal quality is generally taken as a good indicator of a speaker’s emotional and physical state, and hoarseness normally suggests tiredness or ill-health; this could be misleading if the hoarseness is part of the autistic condition. It is, however, true that listeners rapidly learn to discount the information value of habitual voice quality.

The Vocal Profile Analysis assesses laryngeal, phonatory, and articulatory settings, but no publication has been made of its use with speakers with ASD. The GRBAS (Grade, Roughness, Breathiness, Asthenia, Strain) scale is used for evaluating hoarse voice quality, but has apparently not been used for this in people with ASD. This scale was developed in Japan in the 1980s, but has no published standardized English protocol. The Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V) has

standardized English protocol. The Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V) has recently been developed under the auspices of the American Speech-Language-Hearing Association (ASHA) and compares well with the GRBAS for reliability.

##### Automated Assessment Programs have been developed to analyze speech automatically in terms of syllable-length, loudness, and pitch-variation. The advantage of automated assessment is that it can process very large samples, for example, of continuous day-long recordings. A disadvantage is that the programs have some way to go before they can accurately assess appropriateness for language use: Whether the variations of length, loudness, and pitch are typical of the language or accent being

Whether the variations of length, loudness, and pitch are typical of the language or accent being spoken, or adequately convey stress, phrasing, questions, etc.

Oller and associates (see “References and Readings”) have used such automated procedures with no human intervention; comparisons show that human judgment and automated assessment agreed well. They found that vocalizations of typically developing children and those of children with ASD were distinguished by spectral differences related especially to syllabification and by features of voice quality.

Van Santen and colleagues are also working on automated assessment. They have found that children with ASD show a difference in the balance between the various prosodic cues, such as pitch, amplitude, and duration, and not necessarily a difference in the strength or clarity with which prosodic contrasts are expressed.

#### Future Directions Recent research suggests that certain prosodic functions are generally impaired in autism spectrum conditions, for example, stress placement and the expression of emotion, and the understanding of prosody. It also seems that the degree varies more or less according to the severity of the autism condition. There is, however, scope for further research, for example in people with ASD who speak languages other than English.

A generalization in objective terms about the acoustic characteristics of autistic prosody has however proved elusive, although many people who work with autism would find it highly recognizable.
 The period of time-consuming manual data collection and transcription for research purposes appears to be reaching its end, although this is still important for clinical investigation of individuals. In research, the manual process is being overtaken by automation.

The ability to understand prosody is central to language development and it seems that prosodic processing in the brains of those with autism may be different from non-autistic processing. Magnetic resonance imaging is being used to investigate this.

##### Assessment of Prosody in Other Languages The PEPS-C test has been translated into French, Spanish, Dutch, and Norwegian, as described in Peppé et al. (2010). It is also available in various accents of English: UK General, UK Scottish, Irish, North American General, and Australian General. Requests for translated versions have been received from researchers working in Finnish, Portuguese, Farsi, Chinese, and Egyptian Arabic, and translation into more languages is a possibility.

##### Acoustic Characteristics of Prosody in ASD The ability to generalize about the acoustic characteristics of prosody in ASD is still at an early stage. Diehl, Paul and colleagues found that their group of children with ASD had overall longer utterance durations than children with learning difficulties and typical development, and that children with high-functioning autism show greater pitch variation in their speech (see “References and Readings” for details of this work). With increasing

variation in their speech (see “References and Readings” for details of this work). With increasing scope for acoustic analysis such generalization may be extended.

##### Automation Having written nearly 20 years ago, Shriberg and colleagues regret that “completely objective measurement of all relevant parameters for prosody-voice assessment is currently not a technical option . . . use of inappropriate lexical, emphatic, and sentential stress, inappropriate intonation in pragmatic contexts, breathiness, nasality, denasality, and other parameters cannot be accomplished by current voice or speech recognition programs.” Assessment of prosody by automated

accomplished by current voice or speech recognition programs.” Assessment of prosody by automated acoustic analysis is increasingly available as technology develops, as indicated by the work of Oller and colleagues (see “References and Readings”). This focuses on the acoustic characteristics rather than the functions of voice and prosody: Their findings that atypical vocal quality and syllabification in children with ASD can be determined with automated analysis can be expected to contribute to

in children with ASD can be determined with automated analysis can be expected to contribute to early diagnosis and screening for ASD.

##### Prosodic Processing There is increasing interest in using magnetic resonance imaging to establish whether there are differences in prosodic processing in the brains of people with and without ASD. Some differences have been found: for example, that in people without ASD the processing of speech sounds occurs in a different part of the brain than the processing of non-speech sounds, but that this is not the case in people with ASD; and that patterns of brain activation suggested a

but that this is not the case in people with ASD; and that patterns of brain activation suggested a decrease of activation for emotional stimuli in people with ASD. For more recent research in this area, see the work of the Yale Center for Research in Autism and of Isabelle Hesling in Bordeaux, France.

### Paraphasia Margaret Millea Department of Psychology, University of Notre Dame, Notre Dame, IN, USA  #### Synonyms Speech impairment  #### Definition Paraphasia is a speech disorder with neurological origins. Although the hearing and comprehension of speech may not be inhibited, the production of speech is not correct. The individual may be able to speak fluently, but with errors. The errors range from the mispronunciations of single words to the combination of words in inappropriate or

range from the mispronunciations of single words to the combination of words in inappropriate or meaningless ways. Because the sounds or words are mixed up, it may be difficult to understand the intended meaning.

There are three types of paraphasia: 1. Literal or phonemic paraphasia – incorrect phonemes are substituted. For example, one may say “spot” instead of “pot.” Literal paraphasia could also be switching syllables or creating reverse compound words such as “markbook” instead of “bookmark.”

2. Verbal paraphasia – saying a completely different word than the one intended. It could be a semantic replacement and be related to the intended word, or it could be remote with no clear connection to the intended word. An example of semantic verbal paraphasia would be saying “drive” instead of “car.” Remote verbal paraphasia would be saying “dog” instead of “car.”

3. Neologistic paraphasia – more than half of a word is incorrect. Out of context, it is difficult to guess what the intended word was. An example would be substituting “camalee” for “camera.”
 ### Paraprofessional Danielle Geno The College of Arts and Sciences, The University of Vermont, Burlington, VT, USA
 #### Synonyms Aide; Assistant; Associate; Classroom aide; Instructional assistant; One-on-One; Para; Paraeducator

#### Definition Paraprofessionals are employees who, following appropriate academic education/instruction and/or on-the-job training, work with children with disabilities, including those with autism, during the day to support their educational needs. The intention of a paraprofessional is to supplement the work of a teacher/service provider (American Speech-Language-Hearing Association 1999). The paraprofessional is becoming better known as a resource for providing services to the individual

paraprofessional is becoming better known as a resource for providing services to the individual with ASD (National Research Council 2001).

### Pareidolic Faces Robert King School of Applied Psychology, University College Cork, Cork, Ireland  #### Synonyms Asperger’s; Autism Spectrum Disorder (ASD); Face blindness; Mind reading; Prosopagnosia

#### Definition Pareidolia is the overinterpretation of stimuli in the external world to impose patterns where none exist. This can apply to any sensory modality but is most commonly applied to visual stimuli. Within this realm, the term is often used to refer to the common human tendency to see faces where no faces are present. Familiar instances would include faces in the clouds, images of saviors in burnt toast, and the Man in the Moon (Liu et al. 2014). Faces are perhaps the most socially

in burnt toast, and the Man in the Moon (Liu et al. 2014). Faces are perhaps the most socially significant visual stimuli encountered in the human environment (Palermo and Rhodes 2007). Autism spectrum disorder (ASD) is characterized by deficits in response to social stimuli (APA 2013). Thus, it has been hypothesized that those with ASD may be less susceptible to this illusion should neurotypical humans. Furthermore, it has been suggested that this feature may be used as a diagnostic tool to

humans. Furthermore, it has been suggested that this feature may be used as a diagnostic tool to identify ASD at a relatively early developmental stage. Both of these hypotheses have received some empirical support. In respect of the former, there is evidence that children with ASD do not pay particular attention to real faces (Kikuchi et al. 2009), at least not spontaneously (Guillon et al. 2016). In respect of the latter, it has been found that children with ASD are less sensitive to

al. 2016). In respect of the latter, it has been found that children with ASD are less sensitive to pareidolic faces – that is, to objects that most people spontaneously report as possessing a face (Ryan et al. 2016).

### Parent Expectations Mediate Outcomes for Youth with ASD Anne V. Kirby Department of Occupational and Recreational Therapies, University of Utah, Salt Lake City, UT, USA

#### Definition “Parent expectations” is a term used to describe the beliefs parents hold about the likelihood their child will achieve certain outcomes. ASD literature on parent expectations has primarily focused on expectations about outcomes related to the transition to adulthood (e.g., participate in paid employment, live on their own without supervision).

#### Historical Background Parent expectations have been widely studied in psychological and educational literature and have demonstrated relevance to a variety of youth achievement-related outcomes in many studies (e.g., Jeynes 2005; Yamamoto and Holloway 2010). The expectancy-value theory of achievement motivation, researched extensively by Allan Wigfield and Jacquelynne Eccles (e.g., Wigfield and Eccles 2000), describes the role of expectations in informing outcomes and achievement in a

and Eccles 2000), describes the role of expectations in informing outcomes and achievement in a wide range of areas. According to Wigfield and Eccles (2000), what individuals expect to achieve and what they value directly influence their efforts, persistence, decision-making, and, ultimately, performance. In this theory, expectations are also thought to be influenced by other personal and societal factors including demographics, the influences of others, gender stereotypes, and self-concept. As

factors including demographics, the influences of others, gender stereotypes, and self-concept. As written, the theory articulates the role that one’s own expectations for oneself will have on their own outcomes. However, given the important role that parents play in the lives of youth with disabilities, this theory has been proposed to be extended to relate to parent expectations for their youth with ASD (Kirby 2016).

#### Current Knowledge Scholarship over the past decade has suggested that parent expectations are relevant considerations for research related to the transition to adulthood for youth with ASD. Several studies using the National Longitudinal Transition Study-2 (NLTS2; IES n.d.) have provided evidence of the relevance of parent expectations during adolescence as important factors predicting outcomes for young adults with ASD. The NLTS2 involved data collection on over 11,000 US students

outcomes for young adults with ASD. The NLTS2 involved data collection on over 11,000 US students receiving special education services in the year 2000 and involved 5 waves of data collection across 8 years. Students were ages 13 to 16 years at the start of data collection and 21 to 25 at the completion of the study (IES n.d.). In the NLTS2 survey, parent expectations for various young adult outcomes were measured using a four-point scale (i.e., definitely will not, probably will not, probably

were measured using a four-point scale (i.e., definitely will not, probably will not, probably will, definitely will). Although the reasons are poorly understood, parents of youth with ASD in the NLTS2 reported among the lowest (i.e., least independent) expectations for young adult outcomes when compared with youth with other educational disability classifications (Newman 2005).

Using data from the NLTS2, Doren et al. (2012) identified parent expectations of future employment (i.e., the likelihood that their child would eventually have a paid job) as a significant predictor of later employment for youth combined across multiple disability categories. Carter et al. (2012) also found parent expectations to be significant predictors of later employment for youth with severe disabilities (i.e., those eligible for alternative assessments at school). Both Doren et al.

severe disabilities (i.e., those eligible for alternative assessments at school). Both Doren et al. (2012) and Carter et al. (2012) looked at broader disability groups that included youth with ASD. With just the sample of youth with ASD in the NLTS2, Chiang et al. (2013) identified that parent expectations of future employment were able to significantly differentiate individuals with ASD who were later employed versus unemployed; however, this variable was no longer significant when included in

later employed versus unemployed; however, this variable was no longer significant when included in a multivariate logistic regression model. Similarly, when looking at predictors of postsecondary educational participation, Chiang et al. (2012) found that parent educational expectations were able to significantly differentiate individuals with ASD who later participated in postsecondary education. This remained significant in a multivariate model, suggesting that parents who expected their

This remained significant in a multivariate model, suggesting that parents who expected their adolescent child with ASD would participate in postsecondary education were 3.6 times more likely to have a child who did later participate. Across studies, higher parent expectations were associated with more independent outcomes for youth.

Using the NLTS2 sample of youth with ASD, Kirby (2016) applied structural equation modelling techniques to test parent expectations as a statistical mediator of outcomes in young adulthood. The key variables studied were family background (i.e., annual household income, maternal education, race/ethnicity), functional performance (i.e., self-care skills, academic skills, and social skills), and parent expectations about if their child will eventually have a paid job and live independently at

parent expectations about if their child will eventually have a paid job and live independently at the first data collection wave, as well as young adult outcomes (i.e., had a paid job and lived independently) at the final data collection wave. Kirby first ran a model that excluded parent expectations demonstrating how family background and functional performance variables in adolescence significantly predicted to later young adult outcomes. Kirby then added parent expectations as a mediator

predicted to later young adult outcomes. Kirby then added parent expectations as a mediator into the structural equation model and found that the effects of both family background and functional performance were significantly mediated through parent expectations. In the updated model, neither family background nor functional performance directly predicted young adult outcomes; parent expectations were the only variable with a significant direct prediction of young adult outcomes (Kirby 2016).

were the only variable with a significant direct prediction of young adult outcomes (Kirby 2016). Kirby’s (2016) findings suggest that both family background and youth functional performance significantly and directly predict parent expectations about if their child will get a paid job and live independently, which in turn significantly and directly predict young adult outcomes. This study suggested that although parent expectations have often been studied as predictors within regression models

that although parent expectations have often been studied as predictors within regression models (i.e., independent variables), it may be more appropriate to conceptualize them as mediators (Kirby 2016). Furthermore, this study led to questions about if parent expectations causally influence outcomes or if they are an artifact of other causal influences.

Although Kirby (2016) demonstrated that parent expectations were mediators of outcomes for young adults with ASD, that study did not directly test possible reasons why this may be the case. The two leading hypotheses presented by Kirby (2016) were that (1) parents have a nuanced understanding about their child’s future potential and (2) parent expectations directly inform the preparatory actions that parents and youth engage in to prepare for adulthood, thus leading to outcomes that are in

that parents and youth engage in to prepare for adulthood, thus leading to outcomes that are in line with expectations. Studies have since contributed new information about possible reasons – or mechanisms through which – parent expectations predict outcomes for youth with ASD. A qualitative study of parent expectations for 18 transition-aged youth with ASD suggested that as parents consider their future visions for their children with ASD, it can be difficult for them to disentangle

their future visions for their children with ASD, it can be difficult for them to disentangle expectations from hopes, fears, and uncertainty (Chen et al. 2018). Another qualitative study, by Kirby et al. (2019a), involved interviews with seven mothers of youth with ASD to examine how they had developed their expectations. Although not the initial intent, the parents they interviewed also described the ways that their expectations have then influenced the ways they approached planning for the

the ways that their expectations have then influenced the ways they approached planning for the future with their youth. This result suggests that the expectations held by parents inform behaviors and decision-making that can then affect outcomes. For example, parents who believe their child is likely to be employed in young adulthood are more likely to encourage and help their child gain job-like experiences (e.g., chores, volunteer work) in adolescence, which will lead to them being more

experiences (e.g., chores, volunteer work) in adolescence, which will lead to them being more prepared for paid work. This directly ties back to the expectancy-value theory of achievement motivation (Wigfield and Eccles 2000) and its assertion that expectations influence decisions and behavior. These results also support Yamamoto and Holloway’s (2010) hypothesis that parent expectations influence the extent to which parents engage in preparation for outcomes with their children.

Two papers lead by Holmes (Holmes et al. 2016; Holmes et al. 2018) looked at parent expectations as both independent and dependent variables to better understand the role they may play in the transition to adulthood for youth with ASD. These studies provide additional insight into the potential role that parent expectations play as mediators and also contribute to understanding of mechanisms that may explain how expectations influence outcomes. In the first study, Holmes et al. (2016) explored

may explain how expectations influence outcomes. In the first study, Holmes et al. (2016) explored the role of parent expectations as related to parent-child sexuality communication for youth with ASD. They found that for youth with greater ASD symptoms, parents had lower expectations that they would have future romantic relationships and in turn reported having communicated about fewer sexuality-related topic areas with their child. Interestingly, parents of youth with ASD and IQ scores below

topic areas with their child. Interestingly, parents of youth with ASD and IQ scores below 70 who did have expectations that their child would have healthy sexual relationships in the future reported having engaged in more parent-child sexuality communication. However, they did not see the same effect with youth who had average or above-average IQ scores (Holmes et al. 2016). In the second study, Holmes et al. (2018) found that greater ASD symptoms and IQ scores below 70 were significant

study, Holmes et al. (2018) found that greater ASD symptoms and IQ scores below 70 were significant predictors of lower (i.e., less independent) parent expectations for the future in the areas of financial independence, postsecondary education, citizenship, and independent living. When looking at the role of youth gender, parents of daughters with ASD had lower total expectations for the future compared to parents of sons. Since other factors were controlled for, this difference in parent

compared to parents of sons. Since other factors were controlled for, this difference in parent expectations may be related to gender differences in societal expectations or different parental priorities for female versus male youth (Holmes et al. 2018). Holmes et al. (2018) also explored if parent expectations predicted transition preparatory activities, further extending the work to understand mechanisms described previously. They found that parent expectations predicted many of the

mechanisms described previously. They found that parent expectations predicted many of the transition preparatory activities they measured. For example, they found that parent expectations for the future predicted the likelihood that parents reported talking about jobs with their youth, providing chores or other responsibilities at home, and their youth’s participation in life skills classes (Holmes et al. 2018). Both studies provide further support for the idea that parent expectations

(Holmes et al. 2018). Both studies provide further support for the idea that parent expectations influence outcomes for young adults through the actions of parents (i.e., through a mechanism of decisions and behaviors).

In summary, the current state of research on the role of parent expectations as related to the transition to adulthood in ASD suggests that family- and youth-level factors (e.g., socioeconomic status and functional skills, respectively) inform the expectations parents develop for their child’s future. Those expectations then influence decision-making and behaviors engaged in by parents and youth to prepare for adulthood. In turn, those preparatory actions, or lack thereof, lead to the

youth to prepare for adulthood. In turn, those preparatory actions, or lack thereof, lead to the independence-related outcomes of young adults with ASD (e.g., employment, independent living).

#### Future Directions The existing body of research suggests that parent expectations for youth with ASD related to outcomes in adulthood have relevance for future research and practice. Most critically, there is a need to understand the extent to which parent expectations during the transition to adulthood are changeable. If the expectations held by parents of youth with ASD are malleable, then it is possible that interventions to change parent expectations could have a positive influence on

it is possible that interventions to change parent expectations could have a positive influence on outcomes. A pilot study presented at the 2019 Annual Meeting of the International Society for Autism Research suggested that a group-based parent intervention, titled Maximizing Adolescent Post-Secondary Success (MAPSS), resulted in modest increases in

consequently increase or decrease the likelihood of an individual engaging in behaviors that have previously led to sleep. Relevant motivating operations for sleep are the quality, duration, and time elapsed since previous sleep (Laraway et al. 2003). Knowledge of stimulus control and motivating operations have formed the basis of the most widely used sleep strategies, positive routines, and bedtime fading, which in previous research have generally been combined in multicomponent packages

bedtime fading, which in previous research have generally been combined in multicomponent packages targeting sleep improvements.

Positive routines. Bedtime routines are an easy to implement, low-cost means to improve sleep that reduces non-compliance and increases constructive sleep behaviors (Kodak and Piazza 2008). Positive routines emulate a successful intervention within adult insomnia, namely, stimulus control therapy (Perlis et al. 2011), which states that poor sleep results from absence of stimulus control and therefore establishing strong, appropriate discriminative stimuli for sleep can result in a reduction in

establishing strong, appropriate discriminative stimuli for sleep can result in a reduction in sleep disorders. Positive routines consist of a series of five to seven pleasant calming activities undertaken during wakefulness to facilitate sleep onset (Gruber et al. 2011). Studies have noted that routine occurrence rather than content is important (Kodak and Piazza 2008). How distinct and consistent a cue is depends on how often the behavioral sequence is practiced. Through repeated practice of

a cue is depends on how often the behavioral sequence is practiced. Through repeated practice of each step in the sequence, the behavioral chain terminating in sleep onset becomes stronger. Additionally, if discriminative stimuli which cue sleep onset are encountered when the child wakes, independent sleep resumption is more likely. Therefore, by training appropriate cues at bedtime, the length of nighttime wakenings may also decrease. Positive routines are in most occasions implemented by

of nighttime wakenings may also decrease. Positive routines are in most occasions implemented by caregivers, the primary change agents for children with ASD, who often make use of visual schedules to facilitate understanding and adherence to the positive routine (Honaker and Meltzer 2016; Sanberg et al. 2018).

Bedtime fading. The central aim of bedtime fading is to manipulate the sleep-wake cycle so as to increase the likelihood of sleep. Bedtime fading involves temporarily moving bedtime to more closely coincide with the child’s natural sleep onset and then fading this earlier if sleep onset latency remains short to more closely approximate developmental norms and parental wishes (Morgenthaler et al. 2006). Bedtime fading facilitates rapid sleep initiation preventing inappropriate behaviors from

2006). Bedtime fading facilitates rapid sleep initiation preventing inappropriate behaviors from being practiced in bed, as the more inappropriate behaviors are practiced, the more likely they are to access reinforcement. By remaining awake and out of bed longer, a motivating operation emerges which establishes sleep as a potent reinforcer and increases the likelihood of behaviors that facilitate sleep. A scheduled wake time is also established, and sleep is not permitted outside of established

sleep. A scheduled wake time is also established, and sleep is not permitted outside of established sleep times. This further acts to establish sleep as valuable. Faded bedtime has also been noted to closely resemble sleep restriction therapy (Perlis et al. 2011), which has been found effective in reducing adult insomnia.

A number of advantages to bedtime fading have been noted. The intervention is run at a time which decreases the likelihood of parental fatigue and as such minimizes implementation errors (Piazza and Fisher 1991). Further, the likelihood of non-compliant behavior emerging is reduced, as children are only instructed to go to bed once motivation is high. Two biological factors aiding the procedure have been noted. First, increased sleep pressure makes rapid onset more likely. Secondly, a steady

have been noted. First, increased sleep pressure makes rapid onset more likely. Secondly, a steady bed and wake time may regulate the child’s circadian rhythms and enhance synchronization with the desired schedule (Piazza and Fisher 1991).

The use of bedtime fading was first presented by Piazza and Fisher (1989), who discussed its use for a 6-year-old girl with attention deficit hyperactivity disorder who experienced multiple sleep difficulties. The intervention was effective for increasing sleep duration. The first published study occurred at a later date (Piazza and Fisher 1991). Within this, bedtime fading was used for two typically developing children for whom other sleep interventions had been ineffective. Results found the

developing children for whom other sleep interventions had been ineffective. Results found the intervention effective in increasing total sleep duration. This study was based on the work of Adams and Rickert (1989) who combined positive routines with a simplistic version of bedtime fading. Piazza and Fisher’s (1991) study however removed positive routines and evaluated bedtime fading alone. Piazza and Fisher (1991) conducted a follow-up study in which bedtime fading and response cost were used

and Fisher (1991) conducted a follow-up study in which bedtime fading and response cost were used to increase sleep duration for four individuals with intellectual disabilities aged between 3 and 19. Response cost is defined as removing the child from their bed for a predetermined period of time if they do not fall asleep within the designated sleep onset latency or if they awake during night. All four participants demonstrated increased nighttime sleep duration and decreased daytime sleep.

All four participants demonstrated increased nighttime sleep duration and decreased daytime sleep. Similar results have been found by other researchers.

Current Knowledge  In recent years, a significant number of studies have examined the effectiveness of positive routines and bedtime fading.

Positive Routines: Positive routines were first utilized by Milan et al. (1981) as a means to combat negative side effects experienced with extinction. Instead, a fading and chaining intervention was used to alter child sleep behavior. Participants were three children with severe intellectual disabilities. For all participants, the intervention was successful in reducing nighttime tantrums and increasing sleep duration. A second study conducted by Adams and Rickert (1989) compared positive

increasing sleep duration. A second study conducted by Adams and Rickert (1989) compared positive routines with graduated extinction and a control. The dependent variable again was bedtime tantrums. Participants consisted of 36 typically developing toddlers. Similarly to Milan et al. (1981) a bedtime fading component was added though not termed as such. This was the first use of bedtime fading and went on to form the basis of future research. Both treatment groups demonstrated comparable

and went on to form the basis of future research. Both treatment groups demonstrated comparable decreases in bedtime tantrums. However faster effects and greater parental satisfaction were found for positive routines compared to graduated extinction.

A number of studies have utilized positive routines within multicomponent interventions implemented by parents in the home environment, combining positive routines with extinction-based strategies or sleep scheduling (e.g., Christodulu and Durand 2004; Knight and Johnson 2014). Other studies have evaluated positive routines in isolation. For example, Mindell et al. (2009) evaluated the efficacy of positive routines for 405 typically developing toddlers aged between 7 and 36 months. Positive

of positive routines for 405 typically developing toddlers aged between 7 and 36 months. Positive routines were found to be effective at reducing sleep onset latency and night wakings, while a follow-up study found positive outcomes were maintained. A more recent evaluation of the efficacy of positive routines was undertaken by Mindell et al. (2014) who sought to examine the impact of routine “dose” on intervention efficacy. Dose was defined as the amount of routine exposure the child received.

on intervention efficacy. Dose was defined as the amount of routine exposure the child received. This study was cross-cultural with over 10,000 typically developing participants. Positive routines were found effective with routine exposure negatively correlated with bedtime difficulties.

In sum, positive routines are a parent-friendly intervention that allows for individualization, while reducing parental fatigue and increasing implementation accuracy (Kodak and Piazza 2008). Interventions which occur at the child’s bedtime have shown to be more acceptable (Honaker and Meltzer 2016). Bedtime noncompliance has also been noted to decrease as a result of intervention (Morgenthaler et al. 2006). These benefits led Durand (1998) to consider positive routines an errorless approach.

Bedtime Fading. In a further extension of the behavioral literature focusing on sleep, Piazza et al. (1991) evaluated the efficacy of bedtime fading combined with response cost for three children with Rett syndrome aged 4–8 years. All participants demonstrated increased appropriate sleep, decreased daytime sleep, and decreased challenging behaviors. In a further study, a comparison of bedtime fading with response cost and sleep scheduling was also evaluated (Piazza et al. 1997). Results

fading with response cost and sleep scheduling was also evaluated (Piazza et al. 1997). Results indicated that sleep duration increased more for those in the bedtime fading condition compared to the response cost and sleep scheduling conditions. These studies suggest that bedtime fading combined with response cost is effective in improving overall sleep patterns.

More recent empirical evaluation of bedtime fading is multicomponential in nature. Christodulu and Durand (2004) examined positive routines and bedtime fading for four young children with developmental disorders aged 2–5 years. Results indicated increased total sleep duration for all participants. Vriend et al. (2011) evaluated the efficacy of a multicomponent intervention for three individuals with ASD and primary insomnia. The intervention consisted of parent-implemented bedtime fading and

with ASD and primary insomnia. The intervention consisted of parent-implemented bedtime fading and response cost. Increased sleep efficiency and decreased sleep onset latencies were noted. Results were maintained at a 3-week follow-up. More recently, Sanberg et al. (2018) evaluated the efficacy of bedtime fading combined with response cost on decreasing sleep disturbance in children with ASD. This intervention was found to be effective at reducing sleep onset latency and bedtime resistance.

This intervention was found to be effective at reducing sleep onset latency and bedtime resistance. Research to date supports the efficacy of bedtime fading in combination with other interventions. Gradisar et al. (2016) conducted a randomized control trial comparing the efficacy of graduated extinction, bedtime fading, and sleep education on sleep onset latency in infants. Significant improvements were achieved for both graduated extinction and bedtime fading groups. Cooney et al. (2018)

were achieved for both graduated extinction and bedtime fading groups. Cooney et al. (2018) investigated the utility of group parent education to train parents in the implementation of bedtime fading for preschool children. Improvements in sleep onset latency night wakings were noted and maintained at a 2-year follow-up.

Limited research has evaluated bedtime fading in isolation. DeLeon et al. (2004) sought to evaluate the efficacy of bedtime fading to reduce night wakings in a 4-year-old boy with ASD. Results noted an 81% reduction in night wakings and an 82% reduction in self-injurious behavior.

To date only one study has compared the efficacy of positive routines versus bedtime fading. Delemere and Dounavi (2017) compared the efficacy of parent-implemented bedtime fading versus positive routines on sleep onset and night wakings of six children with ASD aged 2.5–6.5 years. While positive results were found for both groups, greater gains were noted for participants of the bedtime fading condition.

Future Directions  It is clear that both positive routines and bedtime fading have demonstrated efficacy in decreasing sleep difficulties in children. The apparent efficacy of stimulus control techniques for sleep is beneficial as it minimizes the need to utilize extinction-based protocols which often present multiple side effects (Jin et al. 2013). Reid et al. (1999) noted a dropout rate of 20% of parent participants from extinction-based interventions due to a reluctance to ignore crying.

of parent participants from extinction-based interventions due to a reluctance to ignore crying. Stimulus control interventions in comparison do not result in prolonged periods of crying or increased rates of challenging behaviors (Burke et al. 2004). A key advantage of stimulus control interventions is the facilitation of sleep-related skill acquisition by children, in contrast to extinction that does not permit this (Cortesi et al. 2010). Finally, intervention implementation at the child’s

does not permit this (Cortesi et al. 2010). Finally, intervention implementation at the child’s bedtime is advantageous, as it minimizes parental fatigue increasing implementation fidelity (Kodak and Piazza 2008). The high social validity, treatment fidelity, and acceptability scores obtained across several studies (e.g., Delemere and Dounavi 2017) also support the positive effects of implementing sleep interventions at this time. This suggests that future research on stimulus control

sleep interventions at this time. This suggests that future research on stimulus control interventions rather than extinction-based approaches is warranted.

Functional relations surrounding sleep require further investigation. Functional assessments are the hallmark of behavioral interventions (Hanley et al. 2003). Sleep problems have been exempt from such analyses, although they represent a severe challenge for children and families. Albeit effective interventions have been documented, the conditions under which each strategy should be implemented to maximize benefit have not been established. Jin et al. (2013) reported the efficacy of

implemented to maximize benefit have not been established. Jin et al. (2013) reported the efficacy of individualized function-based sleep interventions for young children. The lack of environmental contingency evaluation of participants’ sleep difficulties may have adversely impacted results in research to date. Future research should examine the function of sleep problems and use this to guide intervention design and implementation.

Parent-Professional Collaboration Parent-Professional Partnership  Debra Dunn The Center for Autism Research, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA
 Synonyms Family-centered programming; Parent involvement; Parent-professional collaboration

Definition A Parent-Professional Partnership is a collaborative relationship between the parent of a child with a disability and a professional who is involved with helping that child. Educators are the professionals most frequently thought of when referencing a Parent-Professional Partnership. However, any professional who provides a direct or indirect service to the child with the disability or to the child’s family, or who is involved in the policies affecting the child, can be a part of

or to the child’s family, or who is involved in the policies affecting the child, can be a part of this collaborative partnership. In addition to educators, other professionals with whom a parent may form a partnership include policy makers, trainers, and therapists.

Historical Background The Individuals with Disabilities Education Improvement Act of 2004 (IDEIA) specifically endorses partnerships between parents and educators. The IDEIA encourages parents to be actively involved in their children’s education and empowers them with rights and responsibilities with respect to the assessment process and the development of the individualized education program. In particular, the early intervention system requires a family-centered approach that takes family

In particular, the early intervention system requires a family-centered approach that takes family values and priorities into account, which necessitates the development of a Parent-Professional Partnership.

Parent-Professional Partnerships exist in many venues outside the education setting as well. For example, partnerships are frequently formed between parents and professionals delivering therapies and services outside of the education setting (e.g., through a state’s mental health or behavioral health system or through private practice). Parent-Professional Partnerships may also be created to train teachers, staff, or college students pursuing a career in special education. On a larger scale,

teachers, staff, or college students pursuing a career in special education. On a larger scale, federal, state, and local agencies or advisory groups also rely on Parent-Professional Partnerships by having representation from both professionals and parents who work collaboratively to set policies for children with disabilities. For example, every state has a special education advisory committee (SEAC), and many of these committees exist at the local level as well.

Current Knowledge Effective Parent-Professional Partnerships are based on open communication, commitment, trust, sensitivity, and mutual respect. Both sides must recognize the importance of what the other can contribute. While professionals bring expertise on interventions, resources, specialized instruction, and available programming, parents are the experts of their children. While professionals often see the child in only one environment, parents are frequently accustomed to dealing with

often see the child in only one environment, parents are frequently accustomed to dealing with multiple service systems and have the benefit of knowing what has been successful or unsuccessful in the past. Parents can also facilitate communication among service providers, thus assisting with continuity and convergence of services.

Obstacles to the Parent-Professional Partnership include attitudinal barriers, socioeconomic and cultural barriers, communication barriers, and fear. Yet the benefits of an effective Parent-Professional Partnership outweigh the difficulties in overcoming these hurdles: Research has shown that family involvement is one of the most impor-tant factors in ensuring a child's success. Parent training organizations, support groups, and resource centers are available to help prepare parents for this

organizations, support groups, and resource centers are available to help prepare parents for this collaborative role, and increasingly professional organizations are devoting time to train their constituents to work as partners with parents.

See Also Advocacy Early Intervention Individuals with Disabilities Education Act (IDEA) Parent Training  Parents’ Use of Internal State Language with Toddlers with ASD  Tyler McFayden1 and Virginia Slaughter2 1Department of Psychology, Virginia Polytechnic Institute and State University, Blacksburg, VA, USA

2University of Queensland, Brisbane, QLD, Australia  Definition Internal state language (ISL): Internal state language is vocabulary used to convey others’ or one’s own inner perceptions, desires, emotions, and cognitions; also referred to as mental states (Baixauli et al. 2016). ISL includes several categories, including terms referring to perception, physiology, emotion/affect, volition/ability, cognition, and moral judgment/obligation. Examples of categories of ISL, adapted from Bretherton

cognition, and moral judgment/obligation. Examples of categories of ISL, adapted from Bretherton and Beeghly (1982), are below in tabular form (Table 1). ISL is frequently studied in relation to theory of mind and emotion socialization in childhood (Bretherton and Beeghly 1982).

| ISL category          | Words                                                                                              | Examples of ISL verbatim productions from children                                                                          |

| :-------------------- | :------------------------------------------------------------------------------------------------- | :-------------------------------------------------------------------------------------------------------------------------- |

| Perceptual            | See, look, watch, hear, listen, taste, smell, feel, hurt                                           | “I’m going to be a cloud in the sky so you can’t see me.”                                                                   |

| Physiological         | Hungry, thirsty, sleepy, tired, sick                                                               | “Me not sleepy, mommy.”                                                                                                     |

| Emotional/affective   | Happy, fun, proud, feel, better, good, like, love, surprised, sad, angry, scared, messy            | “Santa will be happy if I pee in the potty.”                                                                                |

| Volition/ability      | Want, need, have to, can                                                                           | “My baby needs me.”                                                                                                         |

| Cognition             | Know, think, remember, forget, understand, guess                                                   | “Dolly knows where it is.”                                                                                                   |

| Moral judgment/obligation | Good, bad, naughty, may, let, must, should, have to                                              | “Matthew won’t let me play!”                                                                                                |

Historical Background Internal State Language (ISL) is pervasive in human conversation. Parents label and comment on their children’s internal states starting in infancy (Meins et al. 2001). As they grow, children are continuously exposed to ISL in conversation with parents, siblings, and peers. This is an important factor for children’s social-emotional development (Tompkins et al. 2018). Children begin to speak about mental states usually in the second postnatal year (Bretherton and Beeghly

begin to speak about mental states usually in the second postnatal year (Bretherton and Beeghly 1982). By 2 years of age, children refer to a range of feeling states in themselves and in others and discuss the causes of characters’ feelings in book reading, pretend games, and conversations with others (Dunn et al. 1987). Talk about cognitions, desires, and feelings increases between ages 2 and 4 years, with cognitive talk continuing to increase from 4 to 6 years of age (Jenkins et al. 2003),

4 years, with cognitive talk continuing to increase from 4 to 6 years of age (Jenkins et al. 2003), while other ISL remains consistent or slightly declines.

Understanding and talking about mental states is critical for many developmental skills, including sharing, understanding emotions, prosocial behavior, and theory of mind (Brownell et al. 2013). Observational studies conducted with young, typically developing children indicate that increases in internal state labelling are associated with greater cooperation, conciliatory behavior with siblings (Dunn and Munn 1986), and greater concern and attention to adult distress and emotions (Garner

(Dunn and Munn 1986), and greater concern and attention to adult distress and emotions (Garner 2003).

In addition to children’s ISL, researchers have investigated parents’ ISL. The two are related, such that parents who use a lot of ISL in conversation have children with relatively advanced ISL (Taumoepeau and Ruffman 2008). Parents’ ISL also predicts the child’s later theory of mind, even when controlling for language, age, parent education, and verbosity (Ruffman et al. 2002). Given the strong predictive power of parents’ ISL to children’s social-emotional development, it is understandable

predictive power of parents’ ISL to children’s social-emotional development, it is understandable that parental ISL would be of substantial interest in the study of Autism Spectrum Disorder. A toddler’s use of internal state language is reflective of their theory of mind (Capps et al. 1999), that is, understanding other people as separate beings with their own thoughts, feelings, and concerns. However, children with ASD demonstrate difficulties with ISL: Children with autism are less likely to

children with ASD demonstrate difficulties with ISL: Children with autism are less likely to identify causes of characters’ internal states or to elaborate on internal emotions or cognitions (Capps et al. 1999). Since core deficits of ASD include social-communication skills and theory of mind, ISL provides an interesting vantage point for the study of the development of theory of mind and social-communication skills in this clinical population.

Current Knowledge Do Parents of Children with ASD Produce Less Internal State Language? Some work has noted that parental ISL use with children with ASD is qualitatively and quantitatively different than with typically developing (TD) children. For instance, in a case study conducted with a 43-month-old female with ASD, parental language was recorded and analyzed over a 3-day period. Results indicated that the mother and father used ISL terms in 33% and 24% of their utterances, respectively

that the mother and father used ISL terms in 33% and 24% of their utterances, respectively (Kay-Raining Bird et al. 2008). These values are compared to other studies reporting percentages of ISL ranging from 33% to 60% for typically developing toddlers (Beeghly et al. 1986). In the case study, the most prominent ISL categories included sensory and desire utterances, which occurred more frequently than cognitive ISL categories. Parental elaboration or use of causal language – such as explaining

than cognitive ISL categories. Parental elaboration or use of causal language – such as explaining why a story character may have felt a particular way – was minimal. Thus, both parents in this case used ISL less frequently and less explicitly than a parent of a TD child of the same age. This suggests that parental use of ISL may be qualitatively and quantitatively different for children with ASD, involving less ISL speech overall and fewer causal explanations.

However, other evidence suggests that there may be more similarities than differences in parental ISL towards children with ASD. For instance, during book reading with children ages 4–9 years of age, mothers of ASD-diagnosed and TD children produced narratives of similar length, similar numbers of word tokens, and were similar in the number of times they mentioned cognition, affect, and perception/attention (Slaughter et al. 2007). However, more subtle differences emerged when looking at how

(Slaughter et al. 2007). However, more subtle differences emerged when looking at how ISL was elaborated and clarified in these samples. Mothers of the ASD group produced significantly fewer clarifications and elaborations of cognition and affect terms. For instance, they were less likely to explicitly state the thoughts of characters, including explaining the source of information or noting discrepancies in how two different characters were thinking. After controlling for verbal mental age,

in how two different characters were thinking. After controlling for verbal mental age, maternal education, and maternal verbosity, clarification of affect was associated with theory of mind in the ASD group. These results suggest that while the length of utterances and communicative interchanges by parents to their children with ASD may be equivalent to those of TD peers, the con-tent may be different. Parents of children with ASD may be less likely to elaborate and explain characters’ inner

Parents of children with ASD may be less likely to elaborate and explain characters’ inner thought and feelings.

These findings and conclusions were replicated in work by Hutchins et al. (2017), who compared story narratives of mothers of TD children to mothers of children with ASD (ages 4–11 years). Similar to Slaughter et al. (2007), the authors found that mothers did not differ in the overall amount of ISL talk, but that TD mothers made more causal and clarifying statements connecting internal states to external behaviors. In both groups, mothers who used more cognitive and affective clarifications

to external behaviors. In both groups, mothers who used more cognitive and affective clarifications rated their children as having better theory of mind than mothers who used less ISL. These results seem to confirm that children with ASD are exposed to similar amounts of ISL as their TD peers, but they hear fewer explanatory or clarifying statements about internal states. This could be an important area for intervention since children with ASD may particularly benefit from explanatory, clarifying

area for intervention since children with ASD may particularly benefit from explanatory, clarifying talk about internal states of characters during play and reading (Slaughter et al. 2007).

However, it may be how parents elicit children’s talk about emotions, more so than parental production of ISL, which influences children’s social behavior (Brownell et al. 2013). For example, in a wordless picture book reading task with toddlers, Campbell et al. (2019) investigated parental ISL to three groups: infants at high risk for developing ASD (as indicated by having an older sibling with an ASD diagnosis) but who did not go on to develop ASD, infants at high risk who went on to develop

an ASD diagnosis) but who did not go on to develop ASD, infants at high risk who went on to develop ASD, and infants at low risk for developing ASD. Their results were consistent with other findings in that parents in all three groups used similar frequencies of overall ISL at 22 and 34 months of age. However, parents of children with ASD demonstrated less ISL elicitation from their infants than parents of low risk or high risk, non-ASD children. Thus, perhaps the difference-maker in these

parents of low risk or high risk, non-ASD children. Thus, perhaps the difference-maker in these parent-child interactions is not the quality or quantity of speech input to the child but how well parents are drawing out ISL from their children. This is a promising area for future study.

For TD children, the quantity and quality of parental ISL influences a child’s theory of mind and social cognition (Taumoepeau and Ruffman 2006). It is not yet clear if the same holds true for children with ASD. Mixed results indicate that theory of mind training – which typically incorporates internal state language – may, or may not, be effective for individuals with ASD (e.g., Fletcher-Watson et al. 2014). Although it stands to reason that exposure to explanatory ISL speech may improve ASD

et al. 2014). Although it stands to reason that exposure to explanatory ISL speech may improve ASD children’s theory of mind, there has been no direct research on this topic. The efficacy of parent training to improve ISL, and its subsequent impact on theory of mind and/or social behaviors for children with ASD, are therefore promising areas for future research.

What Factors Influence Parental ISL Production? Parental ISL production may vary depending on many characteristics, including the parent’s own proclivities and preferences, their child’s developmental abilities, and parental beliefs about their child’s development (Beeghly et al. 1986). Parental beliefs, in particular, may be linked to how mothers and fathers parent their young children. Mothers with more complex beliefs about toddler and child knowledge (complex epistemologies) reportedly use

with more complex beliefs about toddler and child knowledge (complex epistemologies) reportedly use mental state language more often to encourage child reflection, which results in greater frequency of mental state terms used by children (Hutchins et al. 2009). Similarly, parents of children with ASD reportedly use similar numbers of mentalistic descriptors when asked to describe their child, as compared to parents of TD children. However, the quality of those descriptors is significantly

as compared to parents of TD children. However, the quality of those descriptors is significantly different (e.g., more negative; Kirk and Sharma 2017). Here again, parents of children with ASD seem to use similar amounts of mentalistic descriptors as TD parents, but those verbalizations are qualitatively different.

Parental ISL may also depend on the perceived conversational readiness of the child. Results from Slaughter et al. (2009) revealed that the earlier infants produced imperative gestures, the more frequently their mothers referenced internal, volitional states at 15 months of age. These results indicate that maternal communication about infants’ wants and desires is linked to their infant’s production of communicative gestures (Slaughter et al. 2009). This linkage of infant gestures to parental

of communicative gestures (Slaughter et al. 2009). This linkage of infant gestures to parental ISL is particularly interesting in the realm of ASD, as children with ASD typically produce fewer gestures and a decreased variety of gestures during parent-child interactions (Mastrogiuseppe et al. 2014). Therefore, infants at greater risk for developing ASD may gesture less, reducing their parents’ opportunities to use internal state language.

Another interesting interaction is present when considering the openness to emotions and emotionality of the parent. Previous works have indicated that variance in emotion-related socialization behaviors of parents – specifically the use of ISL – was explained partially by openness to emotional processes and children’s personality (Mazzone and Nader-Grosbois 2017). Given the Broader Autism Phenotype account of Autism Spectrum Conditions (e.g., Wheelwright et al. 2010), parents of children with

account of Autism Spectrum Conditions (e.g., Wheelwright et al. 2010), parents of children with ASD may possess traits suggesting genetic liability to autism, including less emotional openness or a decreased ability to label emotions in others. As such, parents of children with ASD may naturally use less ISL in everyday interactions, including interactions with their children.

Lastly, there are demographic factors that impact parental ISL use with toddlers and children. One such factor is sex of the speaker and of the child. Although almost all research has been conducted with mothers, some work has looked into parental ISL by mothers and fathers to investigate the role of the sex of the caregiver. With typically developing toddlers, Jenkins et al. (2003) highlighted that mothers spend a higher proportion of their time talking about internal mental states than

that mothers spend a higher proportion of their time talking about internal mental states than fathers. This finding held across all ISL categories. Furthermore, different caregivers may utilize ISL in different ways. LaBounty et al. (2008) found that each caregiver’s use of ISL predicted unique constructs concurrently and later in a TD-child’s life. While mothers’ references to emotion and emotion causal explanatory language predicted children’s concurrent emotion understanding, fathers’ use of

causal explanatory language predicted children’s concurrent emotion understanding, fathers’ use of causal explanatory language referring to desires and emotions predicted children’s concurrent and later theory of mind. The way in which mothers and fathers engage with ISL may also have gendered transmission to children. For instance, mothers and older siblings mention feeling states more frequently to TD girls than to TD boys. Accordingly, by 24 months of age, TD girls refer to their own feeling

to TD girls than to TD boys. Accordingly, by 24 months of age, TD girls refer to their own feeling states significant more than TD boys (Dunn et al. 1987). These sex differences have only just begun to be explored in ASD. One study found that girls with ASD verbalize internal states more often than boys with ASD, but that both girls and boys with ASD fall behind TD children in production of affective state words and ISL (Kauschke et al. 2016). The sex differences in parental ISL production and

state words and ISL (Kauschke et al. 2016). The sex differences in parental ISL production and parent-child transmission of ISL is a significant future direction of research given the sex diagnostic discrepancy in ASD.

Summary Parental internal state language is an important type of communication that contributes to a child’s developing emotion socialization and theory of mind. ISL is used in upwards of one third of parental vocalizations to TD toddlers and children and may even be upwards of 50% of total vocalizations in book-reading tasks (e.g., Beeghly et al. 1986). However, it is not yet clear if these fre-quencies hold among parents with children with ASD. While some case studies suggest that the

fre-quencies hold among parents with children with ASD. While some case studies suggest that the quantity and quality of parental ISL may be lower in families with a child with ASD, other observational studies suggest that parents of ASD children may, in fact, use the same number of utterances and ISL words. The differences, however, in ASD families are how explicitly parents label ISL and elaborate or clarify their ISL statements. While parents of TD children tend to use causal and explanatory

or clarify their ISL statements. While parents of TD children tend to use causal and explanatory ISL language with their children, parents with ASD children do not engage in the same practice of being explicitly causal when talking about internal states, even though children with ASD might benefit from such talk. These differences in parental ISL use may be due to many factors, including parental factors (e.g., parenting beliefs, epistemology, emotional availability, and gender) and child

factors (e.g., parenting beliefs, epistemology, emotional availability, and gender) and child factors (e.g., communicative readiness, gestural production, developmental ability, personality, and gender). Importantly, parental ISL production is likely an interaction of parent and child factors that evolve and change over the course of development.

Given the established connections between ISL and socio-emotional outcomes such as theory of mind and certain social skills in TD children, parental ISL toward children with ASD is an important avenue for continued and future research.

Future Directions Parental ISL is an under-studied area in the fields of clinical psychology and social-emotional development. Many avenues are pressing for future research, including paternal transmission of ISL (e.g., focusing on fathers’ ISL use and the different types of activities that stimulate mothers and fathers to produce ISL spontaneously), sex differences in ISL within ASD samples (e.g., parental ISL to sons versus daughters, sex differences in the processing and use of ISL), and

parental ISL to sons versus daughters, sex differences in the processing and use of ISL), and closer analyses of differences in ISL use by parents of children with ASD. While a few studies have used book-reading or structured play tasks to elicit ISL, future work should aim to increase external validity by investigating ISL in school settings, social settings with peers, and naturalistic family settings. These settings may include a variety of conversational partners, such as teachers,

family settings. These settings may include a variety of conversational partners, such as teachers, grandparents, and siblings; all of whom are under-studied in their contributions to ISL for children with ASD. Future longitudinal work should also aim to better understand the developmental course and causal pathways of parental ISL. For instance, if gestural use by the infant is a signal to parents to commence using mental state language, this is a hypothesis that could be tested

to parents to commence using mental state language, this is a hypothesis that could be tested longitudinally. Finally, careful investigation of associations between exposure to ISL and social-cognitive outcomes for children with ASD may inform novel ISL-targeted interventions for this clinical group.

See Also Figurative Language Language Language Acquisition Metaphoric Language Narrative Language in ASD  Paroxetine  Marcel Moran1, Kate S. Perri2, Kimberly Stigler3 and Christopher J. McDougle4,5 1Indiana University School of Medicine, Indianapolis, IN, USA 2Christian Sarkine Autism Treatment Center, Riley Hospital for Children, Indianapolis, IN, USA
3Christian Sarkine Autism Treatment Center, Riley Hospital for Children, Indianapolis, IN, USA

3Christian Sarkine Autism Treatment Center, Riley Hospital for Children, Indianapolis, IN, 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 Paroxetine hydrochloride; Paxil  Definition Paroxetine is a selective serotonin reuptake inhibitor (SSRI) used to treat depression, social anxiety disorder, obsessive-compulsive disorder, and post-traumatic stress disorder. Paroxetine is available in immediate- and controlled-release formulations and is the most potent inhibitor of serotonin reuptake compared to currently available SSRIs. Originally developed in the 1970s, its side effects include constipation, sedation, sexual

SSRIs. Originally developed in the 1970s, its side effects include constipation, sedation, sexual dysfunction, discontinuation syndrome, and weight gain. Given the growing body of research that suggests that abnormalities in serotonin function are linked to autism, the use of SSRIs in patients with autism has grown. Case studies of patients with autism using paroxetine indicate mixed results, with reports of improved and worsened aggressive behavior.

See Also Antidepressants Selective Serotonin Reuptake Inhibitors (SSRIs)  Paroxetine Hydrochloride Paroxetine  Parroting Movie Talk  Partial Agenesis Agenesis of Corpus Callosum  Participation of Black and African-American Families in Autism Research  Wendy E. Shaia1 and Sarah Dababnah2 1Social Work Community Outreach Service, University of Maryland School of Social Work, Baltimore, MD, USA

2University of Maryland School of Social Work, Baltimore, MD, USA  Definition The majority of research articles focused on autism spectrum disorder (ASD) do not provide sufficient data on race and ethnicity (Pierce et al. 2014); thus, the level of participation of racial and ethnic minorities in ASD research is largely unknown. While approximately 13% of the US population identifies as Black (US Census Bureau 2018), Black children and their families are under-represented in ASD research (Burkett

Bureau 2018), Black children and their families are under-represented in ASD research (Burkett et al. 2015; Hilton et al. 2010; West et al. 2016). Yet, racial disparities concerning timely ASD diagnoses and healthcare access are well-documented (e.g., see Thomas et al. 2007); and service delays persist for Black children regardless of family socioeconomic status (Magaña et al. 2012; Mandell et al. 2010). In this entry the term “Black” refers to people of the African diaspora, including those of

2010). In this entry the term “Black” refers to people of the African diaspora, including those of African American descent, African-Caribbean descent, African-Latinx descent, and those from the African continent.

Historical Background While research on Black families is still emerging, studies have identified potential factors leading to racial disparities in ASD service access and quality. Primary healthcare provider bias toward Black families may negatively impact parent-provider relationships and ASD screening of children, thus delaying children’s access to valuable early intervention (Burkett et al. 2015; Dababnah et al. 2018). Black parents report reluctance to share ASD-related concerns with their

Dababnah et al. 2018). Black parents report reluctance to share ASD-related concerns with their doctors (Donohue et al. 2017), in part because parents often encounter providers who disagree with them about the presence of ASD symptoms (Neuhaus et al. 2018; Dababnah et al. 2018; Pearson and Meadan 2018). Miscommunication between healthcare providers and parents, as well as cultural differences in symptom interpretation, can also lead clinicians to diagnose children differently based on race

in symptom interpretation, can also lead clinicians to diagnose children differently based on race (Barton et al. 2012; Burkett et al. 2015; Mandell et al. 2007).

Current Knowledge A recent study outlined several barriers and facilitators to the involvement of Black children and their families in ASD research (Shaia et al. 2019). The study directly solicited the perspectives of 22 parents and other primary caregivers of Black children with ASD using qualitative interview methods. The majority of participants were mothers of Black children with ASD; the remaining participants were grandmothers and other female caregivers. Approximately half of the

the remaining participants were grandmothers and other female caregivers. Approximately half of the participants had a high school education or less and annual household incomes less than $50,000. Service providers referred over one-third of participants to the study; the remaining parents heard about the study from social media, schools, and community sources.

| Suggested methods       | | :---------------------- | | School outreach         | | Services outreach       | | General flyers           | | Word of mouth           | | Faith-based organizations | | Social media            |  Figure 1 summarizes facilitators, barriers, and recommendations to increase Black children’s involvement in ASD research. Table 1 lists suggestions from caregivers of Black children for research recruitment sources (Shaia et al. 2019). The most common suggestion was

Black children for research recruitment sources (Shaia et al. 2019). The most common suggestion was school recruitment; caregivers also wished to hear about studies from other parents and trusted sources. Notably, researchers should consider recruitment resources other than service providers, as Black caregivers often do not see service providers as trustworthy information sources (Burkett et al. 2015).

Facilitators Desire to Contribute to Inclusive Research Shaia et al. (2019) found that caregivers were motivated to advance and contribute to ASD research. A common motivating factor included caregivers’ desire to help others learn more about ASD, particularly research specifically targeting Black families. These findings were consistent with the Burkett et al. (2015) study of Black children with ASD and their families, which reported families tried to increase ASD awareness and education in

ASD and their families, which reported families tried to increase ASD awareness and education in their communities.

Seeking Information and Support Some caregivers were motivated to take part in research in order to receive information and/or resources for their own children. Another related factor was increasing support for themselves, particularly to address isolation and to speak with others who understood their challenges related to raising a child with ASD.

Engaging with Culturally Responsive Research Team Members Positive interactions with research team members were important facilitators that increased some caregivers’ willingness to become involved in research. Shaia et al. (2019) reported study participants stated that it was important the interviewer identified herself as a Black mother of a child with ASD.

Barriers ASD Stigma and Denial Shaia et al. (2019) found stigma (from both inside and outside the Black community) was a potential barrier to Black families’ involvement in ASD research. Their study also reported stigma was related to denial of the ASD diagnosis, which made parents reluctant to participate in ASD studies. Several other research studies focused on Black families have also identified ASD-related denial and stigma (Burkett et al. 2015; Dababnah et al. 2018; Pearson and Meadan

ASD-related denial and stigma (Burkett et al. 2015; Dababnah et al. 2018; Pearson and Meadan 2018).

Distrust of Research Suspicion and distrust of the research process was a potential barrier to Black families’ engagement with research (Shaia et al. 2019). Concerns about sharing information, particularly with non-Black investigators, were common among caregivers raising Black children with ASD. Other research has similarly found perceived power differentials and cultural differences can be a barrier to Black participants’ involvement in studies (Alvarez et al. 2006).

Lack of Time or Interest Shaia et al. (2019) reported study participants cited lack of time, feeling overwhelmed, and general disinterest as barriers to research involvement. Dababnah et al. (2018) found poverty and other external stressors can be barriers to following up on ASD service referrals, thus suggesting families who are experiencing poverty and other stressors may require additional supports to engage in research.

Inaccessible Research Materials Difficulty in understanding research materials due to low literacy is a barrier for some potential research participants. Shaia et al. (2019) found some study participants were uncomfortable sharing their thoughts when the interview was being recorded. Skinner et al. (2008) likewise concluded lower educational levels were barriers to research participation.

Future Directions Literature inclusive of Black children with ASD and their families is developing. Investigators should consider diverse community-based methods to increase involvement of Black participants, including schools, community services, and faith-based organizations. Partnerships between ASD researchers and community-based organizations can potentially facilitate recruitment of Black and other underrepresented children and their families.

Researchers should be aware of potential barriers to the involvement of Black families in ASD research, including ASD stigma, caregivers’ denial of the ASD diagnosis, lack of time to dedicate to studies, and low literacy. Furthermore, Black parents’ distrust of the research process or investigators can limit their willingness to engage in research. On the other hand, several factors can facilitate Black families’ participation, such as their desire to contribute to studies that advance

Black families’ participation, such as their desire to contribute to studies that advance knowledge of ASD in their communities; to identify peer support; and to locate information for their children. In order to counteract possible parent distrust of the research, investigators should ensure their research team members are representative of the target study sample and engage with potential participants in a warm and empathic manner. In particular, research teams should be aware of the many

in a warm and empathic manner. In particular, research teams should be aware of the many ways in which their personal attitudes and characteristics may influence participants’ comfort and willingness to engage fully in studies. Figure 1 lists additional recommendations to increase participation of underrepresented families. Structured text and visual representations can aid individuals with low literacy to access research materials. Food, transportation support, childcare, and data collection in

to access research materials. Food, transportation support, childcare, and data collection in nontraditional settings (e.g., homes, libraries) can encourage participation. Researchers should also be careful to minimize the time needed to participate in studies.

Shaia et al. (2019) focused on the perspectives of urban caregivers of Black children with ASD. Like some other studies, most of the participants were mothers (Pearson and Meadan 2018; Burkett et al. 2015). Future research should explore how to increase participation of suburban and rural families, as well as non-maternal caregivers. More studies are needed to understand specific methods to support Black families overcome stigma; approaches researchers should employ to recruit Black families to

Black families overcome stigma; approaches researchers should employ to recruit Black families to research; how to improve the quality of services families receive; and how to increase the accessibility of research materials for all participants. With the increase in ASD diagnoses across all races (Baio et al. 2018), it is important that future ASD research is more fully representative of the diversity of the ASD community.

See Also Bias in Assessment Instruments for Autism Parental Response to Diagnosis Service Utilization in Autism Social Class and Autism  Passive Group  Lorna Wing Centre for Social and Communication Disorders, Bromley, Kent, UK  Synonyms Inactive; Unengaged  Definition The various different sets of criteria for autistic disorders usually include repetitive routines, lan-guage abnormalities or mutism, clumsiness, and odd responses to sensory input, but all emphasize marked impairment of social

clumsiness, and odd responses to sensory input, but all emphasize marked impairment of social interaction as a fun-damental problem. Kanner (1943) and Kanner and Eisenberg (1956), in their definitions of early infantile autism, emphasized social aloofness and indif-ference as an essential criterion for diagnosis. Asperger (1944) described children with what he called “autistic psychopathy,” whose pattern of social interaction was active, initiating contact with other people, but inappropriate in

of social interaction was active, initiating contact with other people, but inappropriate in form.

Wing and Gould (1979) and Wing (1981) suggested that these authors were describing different aspects of an “autism spectrum.” This spectrum included those who were “aloof and indifferent” to others, those who were “passive” in their social interaction, and those who were “active but odd” in their approach to others. It must be emphasized that these groups merge into each other – there are no sharp dividing lines. It is also possible for someone to change from one type to another in their

sharp dividing lines. It is also possible for someone to change from one type to another in their pattern of social behavior with increasing age or even in different environments. The typical passive child does not make social approaches but accepts approaches from others. He or she may make eye contact, especially if the person approaching them makes positive effort to obtain eye contact. Many passive children are amenable and willing to do as they are told, so they can be accepted into a

passive children are amenable and willing to do as they are told, so they can be accepted into a group of children playing together. The passive child will often accept the role assigned to him or her, such as that of a baby in a game of mothers and fathers. But, when the game is over, the passive child may continue in the role while the others turn to other pursuits. Passive children are much less likely than others in the autism spectrum to be difficult in behavior, to refuse to cooperate, or

likely than others in the autism spectrum to be difficult in behavior, to refuse to cooperate, or to have temper tantrums so do not draw attention to themselves (but see description of PDA below). However, Wing and Shah (2006) found in a study of individuals with autism spectrum disorders and a history of catatonic features, who developed catatonic deteriora-tion, that this pattern occurred significantly more often in those with a history of social passivity. The clinical picture included

significantly more often in those with a history of social passivity. The clinical picture included movement problems (slowness and difficulty in initiating movements unless prompted, odd gait, odd stiff posture, freezing during actions, difficulty crossing lines, and inability to cease actions) and behavior problems (impulsive acts, bizarre behavior, awake at night but sleeping in the day, incontinence, and excited phases). In addition, there was marked reduction in the amount of speech or

and excited phases). In addition, there was marked reduction in the amount of speech or complete mutism.

In recent years, attention has been given to the prevalence of autism spectrum conditions in females. Attwood (2007) found that girls are more likely than boys to be passive, and, for this reason, their autism often remains undiagnosed. Kopp and Gillberg (1992) and Kopp et al. (2010) have reported that girls are much more likely than boys to refuse demands passively, thus fitting into the group called pathological demand avoidance (PDA) (Newson et al. 2003).

In the past, it has been assumed that the passive group is markedly less common than the aloof or the active but odd groups. However, the recent rise of interest in this group, especially its prevalence in females, may change this view of passivity in autism. It is to be hoped that, in future, research will be carried out into the neurology underlying this mode of presentation.

See Also Active-But-Odd Group Aloof Group Catatonia Gender Differences Spectrum/Continuum of Autism Subtyping Autism  Pathological Demand Avoidance (PDA)  Richard Woods Independent Scholar, Nottingham, UK  Synonyms Autism spectrum disorder and PDA traits (O’Nions et al. 2018); Extreme demand avoidance (Gillberg 2014); Newson’s syndrome (Ogundele 2018); Pathological demand avoidance syndrome (Newson et al. 2003); Rational demand avoidance (Milton 2017)

Definition Elizabeth Newson developed the concept of pathological demand avoidance (PDA) to describe a subset of children referred to her clinic based in Nottingham, UK, in the 1970s (Newson et al. 2003). Newson applied the term PDA to children that were traditionally diagnosed as either having pervasive developmental disorder-not otherwise specified or atypical autism, yet both parents and clinicians thought these terms did not adequately describe the child’s presenting difficulties (Newson et

thought these terms did not adequately describe the child’s presenting difficulties (Newson et al. 2003). Consequently, PDA was first proposed in 1980 as a distinct pervasive development disorder with the following behavior profile (Gillberg 2014): consistent resistance to every day demands, ease at role-play and pretend play, language delay due to passivity, lability of mood and impulsivity due to need for control, neurological involvement, obsessive behavior, passive early history, and surface

need for control, neurological involvement, obsessive behavior, passive early history, and surface sociability that lacks social identity/pride/shame (Newson et al. 2003).

The modern profile provided by a charity has been reduced by removing delayed speech development, neurological involvement, and passive early history (Green et al. 2018). This is due to focus on diagnosing PDA as a specifier for education support, producing autism spectrum disorder + PDA traits diagnosis by some UK clinicians (O’Nions et al. 2018). However, the higher prevalence rates being reported than Newson and colleagues originally observed (Green et al. 2018) are generating concerns about

than Newson and colleagues originally observed (Green et al. 2018) are generating concerns about whether these profiles are representing the same underlying condition. PDA is viewed as clinically useful (Christie 2007; O’Nions et al. 2016), due to its behaviors and educational needs being distinct from autistic persons. These will be explored later.

PDA is frequently contrasted against autism profiles, with growing interest arising from parents, clinicians, and educational practitioners (Christie 2007; Langton and Frederickson 2016). A medium-size early investigation compared PDA to classical autism and Asperger’s syndrome. This study suggested that the following behaviors are more common in PDA than established autism subtypes (Newson et al. 2003): (1) strategies used for avoidance being socially manipulative, such as by distracting the

2003): (1) strategies used for avoidance being socially manipulative, such as by distracting the adult, acknowledging the demand but excusing themselves, physically incapacitating themselves, and retreating into fantasy and role-play (these are examples of demand avoidance); (2) not identifying themselves as a child; (3) instantly changing mood; (4) taking on second-hand roles such as those of a teacher; and (5) their obsessions being often focused on other persons. Significantly, PDAers

of a teacher; and (5) their obsessions being often focused on other persons. Significantly, PDAers (preferred terminology of those identified with PDA) make more sustained eye contact than those with autism (Newson et al. 2003). Contemporarily, research into demand avoidance behaviors indicate that they could be described as strategic instead of “manipulative” and are also identified with many triggers of changes in mood or avoidance ranging from uncertainty to novelty (O’Nions et al. 2018); the

of changes in mood or avoidance ranging from uncertainty to novelty (O’Nions et al. 2018); the latter is also expressed by autistic persons, highlighting the overlap between the PDA and autism profiles.

While PDA has a behavior profile, this is not proof of its existence as a separate entity, and so it has many competing ontologies which are discussed next. As a proposed syndrome, there are various attempts to explain and categorize PDA, which due to its omission from the diagnostic manuals is fiercely debated, in part because of PDA lacking substantial and compelling evidence to settle the debates for its inclusion into the diagnostic manuals (Green et al. 2018; O’Nions et al. 2016; Woods

for its inclusion into the diagnostic manuals (Green et al. 2018; O’Nions et al. 2016; Woods 2017). Previously, PDA was not included in International Classification of Diseases 10th Revision, neither is it recognized in the 11th Revision of the International Classification of Diseases (World Health Organisation 2018). Some view PDA as a pervasive developmental disorder (Newson et al. 2003). The dominant ontology views PDA as part of the autism spectrum (Christie 2007; Langton and Frederickson

dominant ontology views PDA as part of the autism spectrum (Christie 2007; Langton and Frederickson 2016; O’Nions et al. 2018), as a consequence of commonly referring to umbrella pervasive developmental disorders as autism spectrum disorders. Additionally, arguing against debating it’s ontologically, as it distracts from diagnosing PDA and thus utilizing its strategies (Christie 2007).

PDA’s less widely accepted ontologies range from it being autism, a product of autism interacting with its comorbidities in a person (Green et al. 2018), a female form of autism, variations of attachment disorder or personality disorder (Christie 2007), and an expression of autistic trauma (Milton 2017). Particularly, the behaviors associated with the PDA profile overlap with common comorbidities in autism, specifically attachment disorder (Milton 2017), anxiety disorder, attention deficit and

in autism, specifically attachment disorder (Milton 2017), anxiety disorder, attention deficit and hyperactivity disorder, conduct disorder, and oppositional defiant disorder (Green et al. 2018). PDA behaviors may eventually be shown to have heterogeneous origins and mechanisms involving many comorbid conditions (Gillberg 2014). Lastly, its cultural construction is being questioned, notably as the commodification of autism, by pathologizing autistic self-advocacy (Woods 2017), via the double

the commodification of autism, by pathologizing autistic self-advocacy (Woods 2017), via the double empathy problem, and how different autism stakeholders frequently have different outlooks compared to each other, autistic persons self-agency is pathologized (Milton 2017).

Much of the ontology debates focus on the cause of high anxiety levels found in PDA. The dominant ontology, as a form of behaviorism (Milton 2017), views the high anxiety level to be intrinsic to the PDAer (Green et al. 2018). Conversely, its critiques contest that the demand avoidant behavior is caused by anxiety through an interactive, transactional process, wherein differences in the subjective experiences of PDAers render different types of activities aversive compared to the experiences

experiences of PDAers render different types of activities aversive compared to the experiences of neurotypicals, promoting anxiety and avoidant behavior (Green et al. 2018; Milton 2017). Until an overwhelming empirical case is presented or it is adopted in the diagnostic manuals, there will be ample debate and confusion over the nature of PDA. Nonetheless, PDA has specific strategies and so potentially remains clinically relevant; for its diagnostic and screening tools, see O’Nions et al.

potentially remains clinically relevant; for its diagnostic and screening tools, see O’Nions et al. (2014) and (2016).

Phil Christie assisted Elizabeth Newson in the development of PDA as a concept and later refined its educational strategies with input from staff at an autism specialist school (Christie 2007). The strategies for PDA include having a specific keyworker to build a trusting relationship, making demands in an indirect way rather than using direct language, avoiding conflict, being flexible, and adapting and negotiating by providing choices to pupils. Other recommendations were to develop a positive

and negotiating by providing choices to pupils. Other recommendations were to develop a positive relationship, providing indirect praise, using humor to control the child, and use of role-play, novelty, and variety in lesson material to engage the child capturing their interest (Christie 2007). Newson et al. (2003) argued that these strategies are needed because traditional autism strategies emphasizing adherence to routines and structure reportedly do not work on those with PDA. Notably PDAers

adherence to routines and structure reportedly do not work on those with PDA. Notably PDAers are disruptive in specialist autism classes and have high exclusion rates, necessitating these precise strategies, which is an important motivation for clinical recognition or diagnosis of PDA (Christie 2007). Pertinently, the PDA strategies are not to be practiced separate from autism strategies, and each individual is to receive bespoke support.

Langton and Frederickson (2016) explore the educational needs of pupils with PDA, comparing their results to those for autism; their findings sug-gest that need for extra support for PDA is no more than that of autism and cast doubts about the need for an additional diagnostic label of PDA. Critique of PDA strategies includes that in the time since Newson’s description of PDA, there has been a move away from rigidly practiced educational support to bespoke packages (Green et al. 2018). Milton

away from rigidly practiced educational support to bespoke packages (Green et al. 2018). Milton (2017) argues that many of PDA strategies are suitable for other children and that many autism strategies do not work with autistic persons. Though for the foreseeable future its ontology is contested, there is an urgent need for more research into it and adoption of PDA strategies.

See Also Atypical Autism Behaviorist Theory Conduct Disorder England and Autism Personality Disorders Reactive Attachment Disorder  Pathological Demand Avoidance Syndrome Pathological Demand Avoidance (PDA)  Patient- and Family-Centered Care Family-Centered Care, Second Edition  Patricia Howlin  Iliana Magiati Department of Psychology, National University of Singapore, Singapore, Singapore
School of Psychological Science, University of Western Australia, Crawley, WA, Australia

School of Psychological Science, University of Western Australia, Crawley, WA, Australia
 Emeritus Professor Patricia Howlin BA, University of Sheffield, UK (1967); MSC Clinical Psychology, Institute of Psychiatry, London (1968); PhD, Institute of Psychiatry, London (1979); Fellow, British Psychological Society (1990).

Major Appointments (Institution, Location, Dates) Emeritus Professor Patricia Howlin held her first academic appointment as lecturer and then senior lecturer at the Institute of Psychiatry (IOP) at King’s College London, UK from 1973 to 1992. She subsequently became a professor in clinical psychology at St. George’s Hospital Medical School, University of London, UK. In 2006, she was appointed to the first Chair of Clinical Child Psychology in the UK at the Institute of Psychiatry, Psychology and

first Chair of Clinical Child Psychology in the UK at the Institute of Psychiatry, Psychology and Neuroscience (IOPPN), King’s College London, until her retirement from full-time academia in 2014. She con-tinues to be actively involved in research and teaching and is currently an emeritus professor of clinical child psychology at the IOPPN and a pro-fessor of developmental disability at the University of Sydney, Australia. She is also an adjunct professor at Curtin University, Western Australia,

of Sydney, Australia. She is also an adjunct professor at Curtin University, Western Australia, and Griffiths University, Queensland, and visiting professor at the Oslo University Hospital, Norway.

Major Honors and Awards Prof. Howlin has received numerous honors and awards throughout her professional career. She was made a fellow of the British Psychological Society in 1990. More recently, in 2009, the Society for the Study of Behavioural Phenotypes, UK named their annual lecture after her (the Patricia Howlin Prize Lecture), while the Autism Association of Western Australia honored her for her services to autism. In 2013, she won the 2013 International Society for Autism Research

her for her services to autism. In 2013, she won the 2013 International Society for Autism Research (INSAR) Lifetime Achievement Award, and in 2015, she was honored for her contributions to autism research by the German, Austrian, and Swiss Society for Research in Autism Spectrum Conditions.

Landmark Clinical, Scientific, and Professional Contributions In the late 1970s and early 1980s, Patricia Howlin together with Prof. Sir Michael Rutter and other colleagues from the Maudsley Hospital, London published a landmark systematic study – the first in the UK and one of the very first internationally – to demonstrate the effectiveness of parents as therapists for their children with ASD.

Among her many contributions to conducting high-quality, systematic research on issues that were always highly relevant to the needs and priorities of the autism community over the years, three aspects of her work in particular were most prominent in driving the field forward:

1. Her work in the 1970s, 1980s, and 1990s on systematically monitoring, evaluating, and reporting outcomes following behavioral, communication, social, and other comprehensive and focal interventions for individuals with ASD.
2. Her committed focus on the importance of research evidence and of “translating” empirical findings for families and clinicians to support them in making informed decisions.

3. Her research studies published in the 1990s and 2000s on adult outcomes. These were some of the largest and longest term internationally follow-up studies of individuals with ASD first assessed in childhood and followed up in adulthood, and were instrumental in documenting the poor educational, employment, and social outcomes of many adults with ASD, thus firmly placing the urgent need for research and support for adults with ASD on the ASD “map” and agenda.

Short Biography Emeritus Prof. Patricia Howlin, Ph.D., is a con-sultant clinical psychologist and one of the world’s leading experts in autism spectrum and related neurodevelopmental/genetic disorders. Throughout her career, she has held a number of academic and clinical appointments in the UK and internationally and has been involved in numer-ous collaborative and impactful research studies on the effectiveness of comprehensive and focal interventions, mental health and quality of life, and

the effectiveness of comprehensive and focal interventions, mental health and quality of life, and adult outcomes in ASD.

She is the author of more than 200 peer-reviewed research publications on ASD, which have been cited thousands of times. She has also written or cowritten many books on ASD and related conditions which have been translated into a number of different languages, of which Treatment of Autistic Children in 1987 with Michael Rutter, Children with Autism and Asperger Syndrome in 1998, and Autism and Asperger syndrome – Preparing for adulthood in 2004 are especially noteworthy for positively

and Asperger syndrome – Preparing for adulthood in 2004 are especially noteworthy for positively influencing and supporting families and professionals and for bringing scientific knowledge about ASD into the wider community.

In addition to her work in ASD, she has in more recent years extended her research focus to include other neurodevelopmental genetic disorders (i.e., Williams, Down, Angelman, and Cornelia de Lange syndromes). The recipient of multiple awards for her contributions to the field of ASD (including an INSAR lifetime achieve-ment award and the Kanner Asperger award from the German Scientific Association for Autism Research), she was the founding editor of Autism: the International Journal of Research

for Autism Research), she was the founding editor of Autism: the International Journal of Research and Practice, while she currently serves as the President of the Society for the Study of Behavioural Phenotypes.

She continues to lecture internationally and holds a number of visiting appointments and collaborations with leading learning and research institutions in Japan, Australia, Norway, and elsewhere. In addition to her scientific contribu-tions, she has worked closely over many years as an advisor, consultant, or advocate with the National Autistic Society (NAS) in the UK and many other voluntary and community organizations to improve awareness, understanding, support, and funding for individuals

community organizations to improve awareness, understanding, support, and funding for individuals with ASD and other genetic neurodevelopmental conditions across all ages and levels of ability.

Patterning (Doman-Delacato Method)  Robert H. LaRue Douglass Developmental Disabilities Center, Rutgers, The State University of New Jersey, New Brunswick, NJ, USA

Definition The Doman-Delacato method, commonly known as patterning, is designed to improve a child’s “neurological organization” through a series of specific prescribed sensory and motor experiences conducted on a rigorous daily schedule. These methods were presumed to improve functioning of the central nervous system in children with severe brain injuries (Doman et al. 1960).

Historical Background The Doman-Delacato method is an approach to address neurological functioning by a series of motor activities thought to alter the structure and function of specific areas of the brain. The method was developed by Glen Doman, a physical thera-pist, and Carl Delacato, a doctor of education. Doman and Delacato focused on maximizing the development of typical children. Spurring what Doman coined as the “Gentle Revolution,” he began to publish books aimed at teaching parents

what Doman coined as the “Gentle Revolution,” he began to publish books aimed at teaching parents how to make their babies mentally and physically superior. Titles of their published books include “How to Teach Your Baby to Read” (Doman 1964b), “How to Teach Your Baby Math” (Doman et al. 1979), and “How Smart Is Your Baby?: Develop and Nurture Your Newborn’s Full Potential” (Doman and Doman 2006). Many of the titles from the Gentle Revolution series were coauthored with Doman’s son and

2006). Many of the titles from the Gentle Revolution series were coauthored with Doman’s son and daughter, Douglas and Janet Doman. Doman also published a book focused primarily on chil-dren with brain injury. In 1974, he published “What to Do About Your Brain Injured Child: Or Your Brain Damaged, Mentally Retarded, Mentally Deficient, Cerebral-Palsied, Spastic, Flaccid, Rigid, Epileptic, Autistic, Athetoid, Hyperactive Child” (Doman 1974).

In 1955, Doman founded the headquarters for the Institutes for the Achievement of Human Potential in the Philadelphia area. The IAHP (commonly referred to as “the Institutes”) is a nonprofit organization offering inpatient and out-patient treatment for brain-damaged children. The IAHP was created as a means for distributing the Doman-Delacato method, as described in a paper on neurological organization published in the Journal of the American Medical Association in 1960 (Doman et al. 1960). The

published in the Journal of the American Medical Association in 1960 (Doman et al. 1960). The IAHP has gained a global following, with offices in Japan, Italy, Mexico, Guatemala, Singapore, Brazil, Spain, and France.

Rationale or Underlying Theory Temple Fay first applied the recapitulationist view of ontogenesis to children with nervous system disorders (Fay 1955), and the Doman-Delacato method is an extension of this work (MacKay et al. 1986). According to the recapitulationist theory, ontogeny (the development of an individual from fertilized egg to its adult form) mimics phylogeny (the evolutionary history of a species). Stated another way, the development of an individual being imitates the

history of a species). Stated another way, the development of an individual being imitates the evolutionary steps of the species. The recapitulationist school of thought was popular in the 1920s and 1930s. However, the theory has been refuted in modern biology and has not found support in the greater scientific community (Novella 1996).

Doman and Delacato advocate that children are expected to move through a series of locomotor patterns which reflect earlier forms of movements that human evolutionary ancestors performed, such as creeping and crawling. As such, skipping one of these evolutionary steps in one’s own development is believed to result in perceptual and motor difficulty as well as disturbances in language and communication skills (Doman 1974). The method presumes that basic motor sequences are essential to the

skills (Doman 1974). The method presumes that basic motor sequences are essential to the neurological organization of an individual. According to the authors, the different stages of crawling, creeping, and walking are each associated with a unique neurological function and a gap in the appropriate sequence does not allow for an individ-ual to fully develop (Doman 1964b). For example, a child who failed to crawl before walking is hypoth-esized to have skipped a critical step unique to human

who failed to crawl before walking is hypoth-esized to have skipped a critical step unique to human development, and this gap leaves the child subjected to both higher and lower order neurological deficits. Based on this rationale, it follows that the child must be “patterned” by a team of adults trained to position the child’s body in such a way that mimics this critical prerequisite step. As a result, the child’s neurons would be “repatterned” and reorganized in a way that allows them to

a result, the child’s neurons would be “repatterned” and reorganized in a way that allows them to continue with their typical development and encourage learning readiness in academic skills. According to this theory, intellectual disabilities, learning, and behavior disorders are caused by brain damage. Most importantly, these deficiencies are believed to exist on a single continuum for which the only solution is to regress to earlier forms of primitive movement (Cohen et al. 1970).

On the phylogenetic continuum, human movement may be divided into five main classes:
1. Truncal movement: Comparable to the swimming movement of a fish and believed to impact the medullary level of the brain.
2. Homolateral crawling: Defined as a crawling motion in which the arm and leg on the side to which the head is turned and flexed, while the opposite extremities are extended. This is hypothesized to reflect amphibian motility and believed to affect a pontine level of brain organization.

3. Cross-pattern creeping: Defined as creeping with a flexed arm and extended leg on the side toward which the head is turned. This creeping is believed to be related to reptilian movement and is hypothesized to be related to midbrain functioning.
4. Crude walking: Defined as walking without a cross pattern. This reflects a primitive upright form of locomotion consistent with cortical functioning.

5. Cross-pattern walking: Defined as the only uniquely human gait and associated with advanced cerebral function and hemispheric dominance.

In addition, the importance of establishing cerebral dominance is believed to be unique to humans, and this lateral neurological function is said to account for the human ability to read, write, and talk. As such, the lateralization of movement is central in the theory and practice of this method (Holm 1983). The authors also emphasize the importance of adding ongoing sen-sory stimulation to the patterning movements, as learning begins with the stimulation of the senses.

Goals and Objectives Treatment goals of the Doman-Delacato method aim to improve physical, intellectual, and social capability in children with brain injuries by correcting “neurological organization.”

Treatment Participants Proponents of the method believe that treatment is suitable for all children classified as “brain-injured.” As defined by the IAHP, the term “brain-injured” encompasses nearly 300 potential childhood disorders. The IAHP does not differentiate across severity, and even the most severely handicapped children may be admitted. Doman and Delacato have repeatedly emphasized that only those parents who are most dedicated to their children’s recovery can expect to see a result

only those parents who are most dedicated to their children’s recovery can expect to see a result from the prescribed demanding regimen.

Treatment Procedures Predetermined patterns of movement are imposed on the child by manipulation of the child’s extremities. Such manipulations are performed by teams of up to five people, often consisting of therapists, parents, and volunteers. In the sessions, each adult is responsible for manipulating one of the child’s limbs or the head. It is required that it should be performed smoothly and rhythmically and in complete accordance with the movement of the other limbs in order to mimic the

rhythmically and in complete accordance with the movement of the other limbs in order to mimic the natural move-ment of the body (Doman et al. 1960). The IAHP recommends that these exercises be conducted a minimum of at least 5 min, four times a day every day of the week. While the treatment team is initially composed of therapists, it gradually becomes the responsibility of parents and volun-teers to conduct the sessions. Typically, the treat-ment therapists conduct follow-up visits in 60- to

to conduct the sessions. Typically, the treat-ment therapists conduct follow-up visits in 60- to 90-day intervals. It is hypothesized that such patterning sessions will ingrain the movements into the central nervous system.

Parents are also required to provide their children with a program of sensory stimulation. In addition, masking, or rebreathing expired air into a face mask for 30 to 60 s once every waking hour, is promoted to increase cerebral blood flow, increase carbon dioxide intake, and aid in the establishment of hemispheric dominance (Freeman 1967). According to the IAHP, this rebreathing treatment is also recommended in the treatment of seizure disorders, and the IAHP requires that all patients be

also recommended in the treatment of seizure disorders, and the IAHP requires that all patients be gradually weaned off of anticonvulsant medications to maximize the effectiveness of their own treatment regimen. Restricting salt, sugar, and fluids and limiting exposure to music are additional recommendations.

Efficacy Information The Doman-Delacato method has not been scien-tifically investigated with individuals on the autism spectrum. To date, the concept of neuro-logical organization that serves as the foundation for the method has not been subjected to scientific research, and those programs which offer patterning have not been shown to improved learning or functioning. Many have contested that the theo-retical rationale for the treatment is without merit and is inconsistent with accepted views

theo-retical rationale for the treatment is without merit and is inconsistent with accepted views of neuro-logic development (Novella 1996). Although any intervention that calls for one-to-one daily inter-action for hours at a time on a daily basis might have the potential to have some positive effect, evidence for any permanent and lasting change from patterning is lacking (Howlin 1997). As a result, this method has been met with controversy and criticism.

The American Academy of Pediatrics Committee on Children with Disabilities has issued several cautionary statements regarding the Doman-Delacato method. Due to the lack of empirical support for the strategies, warnings were published as early as 1968, with the most recent statement reaffirmed in 2005 (American Academy of Pediatrics 1982; 1999). This was a joint statement approved by several organizations, including but not limited to the American Academy for Cerebral Palsy, American Academy of

including but not limited to the American Academy for Cerebral Palsy, American Academy of Neurology, American Academy for Physical Medicine and Rehabilitation, American Academy of Orthopedics, Canadian Association for Retarded Children, and the National Association for Retarded Citizens (Hyatt 2007).

Outcome Measurement The primary outcome measurement tool for this therapy was developed by the inventors of this method. The Doman-Delacato developmental profile, which is used for both planning treatment and monitoring progress, enables the therapist to ascertain at which level of neurological organiza-tion a brain-injured child is functioning. The pro-file is based on chronological age development when the following domains are hypothesized to develop mobility, language, manual competence

when the following domains are hypothesized to develop mobility, language, manual competence (writing), vision (reading), auditory competence, and tactile competence. Each of these domains is divided into seven chronological stages of func-tional development which corresponds with ascending brain levels.

The validity of this tool for planning treatment or measuring outcome has yet to be demonstrated (Sparrow and Zigler 1978). Because the administration of this instrument at intake informs the course of treatment, changes with treatment may reflect teaching to the test and do not necessarily correlate with a generalizable improvement in functioning. To date, this measurement has not been standardized against any accepted measures of development, although inter-rater reliability is reported to be

against any accepted measures of development, although inter-rater reliability is reported to be valid. The dimensions measured by the assessment make the comparison to any stan-dard measure difficult.

Qualifications of Treatment Providers Staff at the IAHP are trained as “child brain developmentalists.” These developmentalists spe-cialize in one of the following: intellectual excel-lence, physical excellence, or physiological excellence. According to IAHP literature, this certification requires rigorous training and yearly recertification. No certification or licensure process exists outside of the Institutes for the Achievement of Human Potential, and the required qualifications of these child

Institutes for the Achievement of Human Potential, and the required qualifications of these child brain developmentalists are not publically disclosed. The IAHP continually holds courses in seminars throughout the world to educate parents on how to conduct patterning with their children.

Pavlovian Conditioning Classical Conditioning  Paxil Paroxetine  Pay Employment  PDD Asperger Syndrome  PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified)  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

Definition The equivalent, if somewhat ambiguous, terms PDD-NOS, “subthreshold” autism, and “atypical” autism refer to the broad range of conditions char-acterized by problems in social communication as well as in communication and/or restricted interests and behaviors that are suggestive of more strictly defined autism but fall short of the latter concept in terms of symptom thresholds. This term was used in DSM-II-R and DSM-IV and would be somewhat analogous to the term “broader autism

term was used in DSM-II-R and DSM-IV and would be somewhat analogous to the term “broader autism phenotype.” DSM-5 did not include this term, and most cases with it (under “DSM-IV”) would no longer receive a diagnosis (McPartland et al. 2012), but such cases, if they had a “well-established” diagnosis before DSM-5, were “grandfathered” in.

Historical Background The concept has, in many respects, its origins in Rank’s use of the term atypical personality develop-ment to describe a range of difficulties in social-emotional development and regulation (Rank 1949; Caplan 1955). In DSM-III (1980), the word atypical was used to describe “subthresh-old” autism as the latter diagnosis was included in the PDD class for the first time as an official diagnosis. This use of the term unintentionally hearkened back to Rank’s earlier use of the

official diagnosis. This use of the term unintentionally hearkened back to Rank’s earlier use of the same word you describe a rather similar diagnostic concept. In recent years, an awareness of the “broader autism phenotype” and the complex genetics sur-rounding autism have lent increased interest to work on this concept (Towbin 2005; Towbin et al. 2005) which clearly outnumbers more clas-sical autism (Fombonne 2005).

Current Knowledge At present, this and related terms refer to a “residual” category included in DSM and ICD for individuals whose problems do not meet the threshold for diagnosis but which are sufficiently severe as to serve as a source of impairment/distress and are relevant focus for treatment. In reality, the term refers to a relatively large group (probably about 1 in 150 children) of children. Clearly, there is even greater heterogeneity within this condition than there is with autism.

Clearly, there is even greater heterogeneity within this condition than there is with autism. Understandably, many attempts have been made to define specific sub-groups/subtypes, e.g., individuals with greater intentional difficulties versus those with more mood/affective problems (Hellgren et al. 1994; Landgren et al. 1996). Study of the condition may be particularly relevant to the delineation of specific genetic mechanisms (Rutter 2005; Towbin et al. 2005).

In terms of clinical presentation, individuals with this condition frequently exhibit social difficulties, emotional lability, and unusual sensitivities, although, as a group, they probably have cognitive and language abilities than in more “classical” autism. Frequently, clinicians equate the concept with Asperger’s disorder, although some data suggest that in the latter condition social deficits are more severe (Klin et al. 2005; Volkmar et al. 1994; Volkmar and Klin 2000). Treatment

deficits are more severe (Klin et al. 2005; Volkmar et al. 1994; Volkmar and Klin 2000). Treatment approaches are rather similar to those for autism but with an awareness of often reasonably good cognitive potential and the presence of comorbid conditions like anxiety and mood prob-lems as well as affective lability (Towbin 2005). As noted above the lack of explicit recognition in DSM-5 is problematic.

Future Directions Over the coming years, the identification of specific genetic subgroups/subtypes of autism will likely lead to a refinement of this concept.

See Also Autistic Disorder Broader Autism Phenotype Childhood-Onset Pervasive Developmental Disorder DAMP Syndrome DSM-5 DSM-III DSM-IV  PDDRS Pervasive Developmental Disorders Rating Scale (PDDRS)  PDMS Peabody Developmental Motor Scales (PDMS)  PDMS-2 Peabody Developmental Motor Scales (PDMS)  PDMS-II Peabody Developmental Motor Scales (PDMS)  Peabody Developmental Motor Scales (PDMS)  Renee Watling Division of Occupational Therapy, Department of Rehabilitation Medicine, University of

Watling Division of Occupational Therapy, Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA

Synonyms PDMS; PDMS-II; PDMS-2  Description The Peabody Developmental Motor Scales-2 (PDMS-2; Folio and Fewell 2000) is a criterion-referenced and norm-referenced developmental assessment comprised of two scales: the Gross Motor Scale and the Fine Motor Scale. The Gross Motor Scale includes four categories: reflexes, stationary gross motor skills, locomotion, and object manipulation. The reflex subtest is administered to children from birth through 11 months. It contains eight items that measure

is administered to children from birth through 11 months. It contains eight items that measure reactions to environmental events. The stationary subtest includes 30 items that measure equilib-rium and sustained control of the body within the center of gravity. The locomotion subtest measures the child’s skills in moving from one place to another through 89 items that cover the developmental progression of various modes of move-ment. The object manipulation subtest includes 24 items that measure

of various modes of move-ment. The object manipulation subtest includes 24 items that measure the ability to manipulate balls. Test items specifically measure skills such as:

* Reflex integration and postural adjustments * Balancing on one foot and on tiptoes * Crawling, walking, running, jumping, and skipping * Throwing, catching, and kicking a ball  The Fine Motor Scale is comprised of two categories: grasping and visual-motor integration. The grasping subtest includes 26 items that measure the ability of the child to use hands independently or together. The visual-motor integration subtest contains 72 items that measure visual perceptual skills and eye-hand

integration subtest contains 72 items that measure visual perceptual skills and eye-hand coordination. Test items specifically measure skills such as:

* Demonstrating various grasp patterns as appropriate for different objects * Stacking or configuring blocks to replicate a demonstrated design * Manipulating buttons, using scissors, folding paper, and drawing to copy designs

A child’s performance on each test item is scored a 0, 1, or 2. A score of 0 indicates no success on the item, 1 indicates emerging abilities to complete the item, and 2 indicates mastery or success in meeting all criteria for the test item. Test scores can be calculated as percentiles, stan-dard scores, and age equivalents for the Gross Motor Quotient, Fine Motor Quotient, and Total Motor Quotient.

As a performance-based measure, the PDMS-2 can be administered in approximately 20–30 min per scale and 45–60 min for the total test (Folio and Fewell 2000).

Historical Background The Peabody Developmental Motor Scales (PDMS; Folio and Fewell 1983), originally published in 1983, consisted of a Gross Motor Scale and Fine Motor Scale which were normed for children ages 1–83 months. The scales could be used separately to measure the respective motor domain or used together to obtain an overall motor performance composite score. The test was widely used throughout North America and frequently referenced in the published literature. The PDMS was revised

North America and frequently referenced in the published literature. The PDMS was revised in the late 1990s in order to update test items and establish contemporary norms. Normative data were collected between 1997 and 1998 using a sample of 2,003 North American children representing four major geo-graphic regions from 46 states and one Canadian province. The test continues to be widely used by occupational and physical therapists and can also be administered by diagnosticians, early

used by occupational and physical therapists and can also be administered by diagnosticians, early interven-tion specialists, psychologists, and others with training in motor skill assessment.

Psychometric Data Characteristics of the normative sample for the PDMS-2 were consistent with the 1997 US Cen-sus demographic data with respect to geograph-ical area, gender, race, residence location (rural, suburban, urban), ethnicity, and socioeconomic status. Overall, the sample is considered repre-sentative of the US population at the time the test was developed. Scoring norms are available for typically developing children from birth through age 5 (1–84 months). No normative data are

for typically developing children from birth through age 5 (1–84 months). No normative data are available for children with disability conditions.

Reliability. Internal consistency was evalu-ated using Cronbach’s coefficient alphas. Values ranged from 0.84 to 0.98 indicating strong asso-ciations among test items within the same con-struct (e.g., fine motor, gross motor). Measures of test-retest reliability were limited to two groups of young children ages 2 through 11 months (n = 20) and 12 through 17 months (n = 30). Resulting correlation coefficients ranged from 0.73 to 0.96, suggesting acceptable test-retest reliability within the items

ranged from 0.73 to 0.96, suggesting acceptable test-retest reliability within the items applicable to these age groups. Inter-rater reliability for test scores yielded coefficient values of 0.96 to 0.98. Inter-rater reliability for individual test items has not been examined.

Validity. Content validity of the PDMS-2 is supported through developmental theory and var-ious item analysis techniques including item response theory and logistic regression. Age-related trends, such as increases in mean test scores occurring with increasing age, have been observed. The various subtests within each com-posite are supported through confirmatory factor analysis.

Concurrent validity was examined between the PDMS-2 and the initial version of the test, the PDMS. The resulting correlations were strong with 0.84 for the fine motor compos-ite and 0.91 for the gross motor composite. Mod-erate to strong correlations were also noted with scores from the gross and fine motor scales of the Mullen Scales of Early Learning: AGS Edition. Clinical Uses The PDMS-2 is often used in clinical and educa-tional settings to assess gross and fine motor skills along the

is often used in clinical and educa-tional settings to assess gross and fine motor skills along the developmental trajectory (Richardson 2010). The tool can be used to identify children with delays in motor skills and to plan intervention.

The PEDI manual contains evidence of high internal consistency (i.e., the degree to which the items in each of the domains measure a similar concept). Internal consistency has since been replicated and found to be adequate in a population of children with cerebral palsy (McCarthy et al. 2002). Additional evidence of instrument reliabil-ity is provided when comparing the results of separate PEDI administrations by two different examiners with two respondents who know the child well (e.g., a

administrations by two different examiners with two respondents who know the child well (e.g., a child’s parent and member of his or her rehabilitation team). Interrater/intrarater reliability was shown to be fairly consistent when two caregivers of a child were interviewed by the same clinician (Berg et al. 2004). However, when multiple clinicians interviewed providers, reliability of results was lower (Berg et al. 2004). Test-retest reliability data are not available.

The PEDI authors provide evidence of satis-factory validity on several dimensions. The results of reviews of the instrument by developmental experts suggest that the PEDI does measure the presence of a pediatric functional disability (i.e., content validity). A strong positive correlation between the age of the children in the normative sample and their PEDI scores suggests that the skills measured by the instrument are closely tied to overall child development (i.e., construct valid-ity).

by the instrument are closely tied to overall child development (i.e., construct valid-ity). Scores on the PEDI were found to be strongly correlated with scores on the Battelle Develop-mental Inventory Screening Test (BDIST; Newborg et al. 1984) for both a group of typically developing children and a group of children with disabilities (Feldman et al. 1990). Evidence of strong discriminant validity is provided in the PEDI manual as well, suggesting that the instru-ment effectively distinguishes

is provided in the PEDI manual as well, suggesting that the instru-ment effectively distinguishes between children with and without disabilities. A comparison of PEDI scores of a group of children at hospital intake for traumatic injuries with their follow-up scores at 1 and 6 months postrehabilitation showed that the PEDI detected change in the functional status of children over time, suggesting evaluative validity (i.e., the ability of the instru-ment to detect change in functional status of

evaluative validity (i.e., the ability of the instru-ment to detect change in functional status of the individual).

Since its publication in 1992, the PEDI has been translated and used in several other countries with solid psychometric results (e.g., Ganotti and Cruz 2001; Wassenberg-Severijnen et al. 2003), suggesting that the instrument is a good measure of overall functional skill development. A recent attempt to abbreviate the measure and make a computer version shows promise (Coster et al. 2008). The PEDI has been utilized with a variety of populations (e.g., premature infants, brain inju-ries, autism,

has been utilized with a variety of populations (e.g., premature infants, brain inju-ries, autism, cerebral palsy) but may be best suited for populations with severe motor deficits. For example, while the PEDI has been consistently shown to be effective in identifying motor pro-gress of children with cerebral palsy (e.g., Vos-Vromans et al. 2005), it is less sensitive in detecting subtle deficits of children with primary language impairments (Mayrand et al. 2009). In 2012, a version of the

of children with primary language impairments (Mayrand et al. 2009). In 2012, a version of the computer-assisted ver-sion of the PEDI specifically for use with children with ASD, the PEDI-CAT ASD, was developed (Kramer et al. 2012). Subsequent research provides some evidence that this version demonstrates strong test-retest reliability and high construct validity with children with ASD and that this instrument may be preferable over administration of lengthier instruments, such as the Vineland

instrument may be preferable over administration of lengthier instruments, such as the Vineland Adaptive Behavior Scales (Kramer et al. 2016).

Clinical Uses For children with autism, the PEDI is most likely to be administered as part of an intake evaluation (e.g., such as during referral for early intervention services) or when there is a concern about addi-tional physical disabilities or delays that impact the independent functioning of the child. Given the “prompt dependency” that many children with ASD demonstrate (i.e., the necessity of caregivers to direct a child to initiate and/or complete a task that is otherwise within his

of caregivers to direct a child to initiate and/or complete a task that is otherwise within his or her skill repertoire), the PEDI may be a useful tool for monitoring independence and timely use of functional skills. Repeated administrations of the PEDI as part of ongoing treatment for a child with ASD may allow caregivers and clinicians the ability to mon-itor progress with functional skills over time. Given that the data used to establish the norms were collected over 30 years ago, it is

over time. Given that the data used to establish the norms were collected over 30 years ago, it is recommended that normative standard scores be interpreted with great caution.

The PEDI is most useful in the assessment of children with motor disabilities such as children who were premature infants or who have cerebral palsy.
 See Also Functional Life Skills Vineland Adaptive Behavior Scales (VABS)  Pediatric Onset Schizophrenia Childhood Schizophrenia  Pediatric Speech Intelligibility Test  Jennifer McCullagh Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA

Synonyms PSI test  Description The Pediatric Speech Intelligibility (PSI) test is a closed-set test composed of 20 monosyllabic words and a 10-sentence procedure. The mono-syllabic word lists consist of simple nouns like “bear” and “fork.” The sentences consist of two formats. In the first format, the sentences are com-posed of a noun phrase, verb-ing, and a noun phrase and are preceded by the carrier phrase “show me.” An example of a sentence in the first format is “Show me a rabbit painting an

phrase “show me.” An example of a sentence in the first format is “Show me a rabbit painting an egg.” In the second format, the sentences are composed of a noun phrase, auxiliary verb-ing, and a noun phrase. An example of a sentence in the second format is “A rabbit is painting an egg” (Jerger et al. 1980; Northern and Downs 2002). The child is instructed to point to one of the five pictures corresponding to the sentence or word that is heard (Jerger et al. 1981). The PSI test can be administered

to the sentence or word that is heard (Jerger et al. 1981). The PSI test can be administered in quiet, as well as in the presence of a competing message.

Historical Background The Pediatric Speech Intelligibility (PSI) test was developed to evaluate both peripheral and central components of auditory disorders in children between the ages of 3 and 6 years. The test takes into consideration children’s receptive language function since the test stimuli were generated by typically developing children between 3 and 7 years of age. The word and sentence stimuli were elicited by picture stimulus cards which were chosen from lists of words and actions

stimuli were elicited by picture stimulus cards which were chosen from lists of words and actions comprising the vocabularies of young children (Jerger et al. 1980).

Psychometric Data Validity studies using the PSI test indicate that test performance on the Format I and Format II sentences was significantly different in children between the ages of 3 and 6 depending on their chronological age as well as receptive language ability. Performance on the monosyllabic word materials did not change with receptive language abilities. Trends in chronological age were evident for both the word and sentence materials (Jerger et al. 1981). Performance intensity

were evident for both the word and sentence materials (Jerger et al. 1981). Performance intensity functions were reported in quiet and in noise and performance reached 100% in children with normal hearing on words and sentences in both quiet and noise at a presentation level of 50 dB SPL (Jerger and Jerger 1982). Test-retest measures indicated high test-retest reliability for both normal hearing and hearing-impaired children (Jerger et al. 1983). Furthermore, the PSI test has been shown to have

hearing-impaired children (Jerger et al. 1983). Furthermore, the PSI test has been shown to have high sensitivity and specificity to central auditory ner-vous system lesions in children (Jerger 1987).

Clinical Uses The PSI test has been used to evaluate speech intelligibility in quiet and in noise in a variety of populations, both children and adult as follows: speech intelligibility in children with recurrent oti-tis media (Jerger et al. 1983), central nervous sys-tem lesions (Jerger et al. 1983; Jerger 1987), and hearing impairment (Jerger et al. 1983). In addi-tion, the PSI test has been used to evaluate speech intelligibility in children with cochlear implants and hearing aids (Somers

used to evaluate speech intelligibility in children with cochlear implants and hearing aids (Somers 1991). Clinically, the person administering the PSI should take into con-sideration the cognitive, hearing, speech, and lan-guage abilities of the individual being tested as these factors may affect outcomes. Thus, the PSI is not typically administered to children with autism, and performance on this test should be interpreted with caution in this population.

See Also Central Auditory Processing Disorder  Peer Mentors for Students with ASD on College Campuses  Barbara A. Cook1 and Deborah Weiss2 1Department of Communication Disorders, Center of Excellence on Autism Spectrum Disorders, Southern Connecticut State University, New Haven, CT, USA
2Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA

2Department of Communication Disorders, Southern Connecticut State University, New Haven, CT, USA
 Definition A peer mentor is an individual with an expected level of experience in a particular area who provides support to a similar-aged individual with less experience in that area (mentee). The critical roles of peer mentors on college and uni-versity campuses include support in coursework, degree completion, and navigation of social networks.

In this model, peer mentors typically share common characteristics, attributes, or circum-stance with the mentee in such areas as age, abil-ity, interests, or community environment (i.e., school, classes, dormitories, etc.). The desirable traits and skills of peer mentors include patience, flexibility, and effective communication. Peer mentors typically receive training that provides them with skills such as effectively using peer modeling to demonstrate appropriate utilization of targeted

skills such as effectively using peer modeling to demonstrate appropriate utilization of targeted skills, facilitating interaction, and pro-viding indirect guidance and positive reinforce-ment (Battaglia and Radley 2014). The peer mentor/mentee relationship should be one of reciprocity (Gilman 2006); therefore, at its very core, this model provides support on a social level.

Historical Background Over the last 10–15 years, there has been an increase in the number of adults with autism spec-trum disorder (ASD) who are capable of engaging in postsecondary education. The literature indi-cates, however, that many of these individuals either do not attend an institution of post-secondary education or, when they attend, strug-gle with successful completion of a terminal degree (Shattuck et al. 2012). Overarching factors that negatively impact success include challenges

(Shattuck et al. 2012). Overarching factors that negatively impact success include challenges in the areas of social interaction, executive func-tion, and emotional regulation (Adreon and Durocher 2007; Gotham et al. 2015). Many who do complete a terminal degree experience diffi-culty securing gainful employment; this appears to be connected to ongoing challenges with social interaction and poorly developed social capital (Dipeolu et al. 2015).

Social capital refers to connectedness and engagement with individuals, organizations, and communities. Higher levels of social capital are linked to better outcomes in education, employment, health, political participation, safety, and well-being for all individuals (Clark et al. 2015; Hill 2011; Seibert et al. 2001). Building social capital takes time and investment and a strong capacity for socially interacting with a variety of individuals. Students with ASD who attend postsecondary

for socially interacting with a variety of individuals. Students with ASD who attend postsecondary education institutions have difficulty building social capital due to numerous challenges they face in areas such as time man-agement, social interaction, emotional regulation, and navigation of the curriculum.

Many students with ASD, who received sup-port or accommodations in secondary education, no longer receive assistance at their postsecondary education institutions for a variety of reasons, including a lack of willingness to disclose their disability. Furthermore, there is a lack of knowl-edge and understanding of autism by peers, stu-dent affairs staff, and faculty which further impedes potential natural support across multiple settings (Van Hees et al. 2015). Gelbar et al. (2014) reviewed 20

natural support across multiple settings (Van Hees et al. 2015). Gelbar et al. (2014) reviewed 20 articles that focused on the collegiate experiences and/or support of students with ASD. Commonly reported emotions among these students included anxiety, loneliness, depression, and peer rejection; all factors possibly related to poorly developed peer networks and lower levels of social capital. The authors con-cluded that there is a scarcity of research on post-secondary education experiences of

authors con-cluded that there is a scarcity of research on post-secondary education experiences of students with ASD, noting that most articles are case studies and very few are empirical in nature.

It is crucial to identify the most effective sup-ports to address core challenges so that these capable individuals will be able to live up to their potential to complete a postsecondary edu-cation degree. One such support, commonly referred to as peer-mediated intervention or peer mentoring, is rising in popularity. Given the cur-rent ubiquity and success of peer mentor programs on college and university campuses, it would appear to be a reasonable approach with signifi-cant potential. Peer

university campuses, it would appear to be a reasonable approach with signifi-cant potential. Peer mentors can assist students with ASD by modeling social behavior, assisting in making new friends, and supporting involve-ment in extracurricular activities, areas critical for the development of a peer network and increased levels of social capital.

Current Knowledge Evidence exists to support the value of the use of peer mentors in the college setting for all students, particularly for incoming freshmen. These types of interactions provide the opportunity for stu-dents to build social networks. Social networks that are developed with faculty, staff, peers, friends, and mentors are strongly linked to student success, e.g., satisfaction, persistence, etc. (Kuh et al. 2012). In addition to acknowledging the effectiveness of peer mentors for

etc. (Kuh et al. 2012). In addition to acknowledging the effectiveness of peer mentors for all students at the college level, evidence of how to use peer mentors to increase social and academic success for individuals with ASD is needed if this is to be considered a reliable support. There is ample evi-dence in the K-12 setting of the effectiveness of the use of peer mentors to assist students with ASD in improving social interaction, emotional regulation skills, and academic skills (Hart et

with ASD in improving social interaction, emotional regulation skills, and academic skills (Hart et al. 2010; Tichenor 2016).

The strategies used in studies of peer-mediated intervention (PMI) in the secondary education population may be useful for students in post-secondary education. Bambara et al. (2016) trained a group of high school students for a period of 18 weeks, 3–4 days per week, to serve as conversational peers to three students with ASD. At the end of the intervention period, the authors found an increase in the following: num-ber of conversational acts, initiation and length of conversations, asking of

in the following: num-ber of conversational acts, initiation and length of conversations, asking of follow-up questions, making comments, and assertive conversation acts. The authors cited the necessity of systematic intervention in training the peer mentors, conclud-ing that proximity alone would not be sufficient to promote the social interaction. Although there is a paucity of research that addresses the utilization of peer mentors in assisting students with ASD in institutions of

that addresses the utilization of peer mentors in assisting students with ASD in institutions of postsecondary education, it is rea-sonable to assume that many of the same factors that have led to success with younger students would also apply to this age group.

Peer mentors have been observed to be helpful in modeling appropriate social behavior and assisting students with ASD in meeting new friends and broadening their friendship circle at the precollege level. However, given the shift in

relaxation therapy. While pharmacological treatments for headaches (and pain in general) are frontline treatment options, some individuals do not wish for, or respond well to, medication. In these cases, relaxation therapy has proved to be a viable alternative. Anxiety disorders are the most common conditions to be successfully treated with relaxation techniques, particularly muscle relaxation therapies. While there are a limited number of empirical studies that support the efficacy of

therapies. While there are a limited number of empirical studies that support the efficacy of relaxation therapy when compared with other evidence-based treatments, a number of well-designed randomized controlled trials have been conducted. Relaxation techniques have also been tested for the treatment of specific behaviors in youth with autism spectrum disorders (ASD).

Treatment Procedures Relaxation techniques typically take place in a clinic-based setting with a mental health professional on an individual basis. Treatment usually begins with an introduction of the rationale to the patient as well as several sessions of “training” on the relaxation process. While the first several sessions are heavily therapist-driven, as treatment progresses, the patient starts to take over the process of implementing the relaxation techniques with practice outside of the

to take over the process of implementing the relaxation techniques with practice outside of the therapy room serving as a key component for generalization across settings. However, several studies have found that successful implementation of relaxation techniques by paraprofessionals and non-experienced parents can be achieved. Treatment providers are typically seen as coaches in that the goal is to teach the individual strategies in order for patients to eventually recognize when to use

is to teach the individual strategies in order for patients to eventually recognize when to use relaxation techniques and effectively implement them when needed. Treatment is usually provided during several weeks of sessions with a combination of practicing in session and at home. The specific number of treatment sessions associated with successful remittance of problems is undetermined at this time, as studies have ranged from as few as one session a day for two weeks to as long as one time a

as studies have ranged from as few as one session a day for two weeks to as long as one time a week for 15 weeks. Relaxation therapies, regardless of which method is used, all focus on the systematic management and reduction of physical tension. Given the long-standing history of progressive muscle relaxation training to address anxiety in youth, a general outline of the methods is provided. The basic procedures involve the client sitting in a comfortable chair as the therapist instructs them

basic procedures involve the client sitting in a comfortable chair as the therapist instructs them in alternating contracting and releasing of different muscle groups, typically beginning with the large muscle groups (e.g., arms and legs) and progressively moving to the smaller groups (e.g., face and hands). The client learns to recognize the contraction and relaxation in a certain order, simultaneously relaxing all parts that have been previously relaxed. After mastering the relaxation

simultaneously relaxing all parts that have been previously relaxed. After mastering the relaxation sequence, clients are taught to relax their muscles in real-life situations. It should be noted that relaxation techniques are often provided as a component of a larger cognitive behavioral therapy treatment program.

Efficacy Information Some difficulties arise when evaluating the efficacy of relaxation therapies due to the wide range of dependent variables used as well as the imprecise definition of relaxation strategies used in studies. Due to the variety of disorders that are targeted with relaxation therapy, measures vary greatly from study to study. Studies focusing on relaxation to decrease anxiety use measures of anxiety symptoms for their outcome measures, while studies using relaxation to decrease

measures of anxiety symptoms for their outcome measures, while studies using relaxation to decrease disruptive behavior problems may measure the total number of outbursts over a specific amount of time. In addition, several measures are used to capture the multiple features of a single disorder within a study, thus making it difficult to compare treatment efficacy across studies. However, findings from studies have shown that some relaxation therapies may be as effective as other behavioral

from studies have shown that some relaxation therapies may be as effective as other behavioral treatments for certain symptoms when they are accompanied by other supportive measures and maintained for an extended period of time. In a randomized controlled experiment, cognitive therapy and an applied relaxation therapy were compared in the treatment of adults with generalized anxiety disorder. At post-treatment, patients from both groups improved on all independent assessor ratings and on eight

post-treatment, patients from both groups improved on all independent assessor ratings and on eight of the nine self-report measures with no differences observed in either condition. In addition, a comparable number of participants in each group showed significant clinical improvement. On average, participants were able to maintain these improvements for an average of 13.7 months. Long-term follow-up studies have shown that gains made during treatment are typically maintained for an extended

studies have shown that gains made during treatment are typically maintained for an extended period of time. Other studies also have found that treatment outcomes were maintained for several months after treatment completion with one study finding that positive results from relaxation therapy were maintained at a follow-up of 19 months. It should be noted that more evidence has accrued favorable to relaxation therapy for adults with psychological difficulties than with children.

Escalona and colleagues found that children with ASD who received massage therapy, when compared with a control group, exhibited fewer stereotypic behaviors and more on-task and social relatedness behaviors as well as fewer sleep problems posttreatment. Treatments with relaxation components focusing on the reduction of self-injurious and disruptive behaviors have been found to be successful in individuals with ASD as well. Mullins and Christian examined the effect of a progressive relaxation

individuals with ASD as well. Mullins and Christian examined the effect of a progressive relaxation training program on disruptive behavior problems of a 12-year-old boy with autism. Training consisted of presenting the boy with the steps of the relaxation process along with a training book that provided visual cues while the researchers gave minimal verbal prompts throughout the process. Results from their study indicated that a decrease in the duration of disruptive behaviors occurred when

from their study indicated that a decrease in the duration of disruptive behaviors occurred when relaxation training preceded a leisure activity session (compared with no relaxation prior to activity). In addition, the percent of overt relaxed behaviors increased following training and results were acquired through minimal assistance after training. Reese et al. examined the effects of a multifaceted intervention program to reduce disruptive behaviors of individuals with autism and mental

intervention program to reduce disruptive behaviors of individuals with autism and mental retardation living in a community group home. One component of the treatment was a relaxation breathing exercise taught to the participants as well as teaching them how to request a break to relax when exhibiting pre-disruptive behaviors. While the results are somewhat mixed as to the efficacy of the relaxation component, they did find that the participants could relax when prompted (although counselors

component, they did find that the participants could relax when prompted (although counselors could not always anticipate when they needed to be prompted) and were able to increase the number of times they requested a break to relax. Reasons as to why and how relaxation therapy works have been difficult to come by, and research into identifying key elements of the techniques has been urged by researchers in this field.

Outcome Measurement Outcome measures vary with regard to the targeted behavior of the treatment. When treating individuals with anxiety, anxiety measures are typically used pre- and posttreatment in order to determine if the level of anxious symptoms decreased following treatment. Measures may be completed through diagnostic interviews with the patient such as the Anxiety Disorder Interview Schedule: Parent and Child Versions or through self-report measures such as the State-Trait Anxiety

Schedule: Parent and Child Versions or through self-report measures such as the State-Trait Anxiety Inventory. During neurofeedback training, individuals are made aware of their brain activity through the use of electroencephalograph (EEG) with the goal being to control central nervous system activity. One drawback to the use of relaxation techniques is the lack of measurement of actual relaxation behaviors, making it difficult to determine if a relaxed state was achieved. In more recent

behaviors, making it difficult to determine if a relaxed state was achieved. In more recent studies, some researchers have attempted to address this limitation by using such measures as the Behavioral Relaxation Scale, an indicator of relaxation shown to have a positive correlation between those scores as well as electromyography recordings and self-report measures. Overall, there are a limited number of tools or instruments that are used to measure the level of relaxation obtained by the

number of tools or instruments that are used to measure the level of relaxation obtained by the individual. Measures are typically focused on the behaviors that are the target of the relaxation therapy, which can vary widely due to the use of these techniques on an assortment of conditions.

Qualifications of Treatment Providers Depending on the type of relaxation therapy used, the qualifications of the treatment providers differ. Most relaxation therapies are conducted by a licensed therapist who is able to help the individual recognize the distressing or uncomfortable feelings that need to be targeted as well as guiding the individual through relaxation techniques. For massage-based relaxation therapies, a licensed massage therapist, physical therapist, and even parents have been

relaxation therapies, a licensed massage therapist, physical therapist, and even parents have been trained to use massage to reduce pain and promote relaxation. However, there have been some relaxation therapies that have been found to reduce problem behaviors, such as anxiety, through means that have yet to be understood and do not require a licensed therapist to provide the treatment (e.g., standard scripts, audiotaped instructions). Researchers are beginning to investigate the mechanisms

standard scripts, audiotaped instructions). Researchers are beginning to investigate the mechanisms behind these therapies to understand efficacy and how to best implement them.

Repertory Grid Process for Person-Centered Assessment of Social Cognition for Adolescents with Autism Spectrum Disorder

Definition A person-centered process for assessment and exploration of the social cognitive personal construct systems of adolescents with ASD with average or above-average intelligence and language skills. The process is modified from the typical flexible format presented in the repertory grid literature to provide visual structure and a unique prompting hierarchy to help adolescents with ASD engage in the process.

Historical Background Social pragmatic communication deficits are core to autism spectrum disorder (ASD). Social skills groups designed to help adolescents with ASD learn and/or improve their ability to communicate with others in social environments are commonplace; however, the process of evaluating adolescents with ASD to determine their baseline social pragmatic communication skills, inform goals for therapy, and provide therapeutic interventions varies. Many standardized (and a few

goals for therapy, and provide therapeutic interventions varies. Many standardized (and a few non-standardized) methods of evaluating social skills of such individuals typically entail gathering observational data of social behaviors an adolescent displays and those behaviors he or she does not display, then ranking those social skills on Likert-type rating scales. Although such approaches can identify social skills demonstrated by the individual, they are limited to a “snapshot” of observable

social skills demonstrated by the individual, they are limited to a “snapshot” of observable behaviors that arise as a function of the immediate environment and fail to access underlying cognitions and attitudes related to social interactions. Literature from personal construct psychology suggests that these underlying cognitions and attitudes are part of an organized system of personal constructs that can be accessed through a process called the repertory grid assessment. Although repertory

that can be accessed through a process called the repertory grid assessment. Although repertory grids have been used by clinicians and researchers for many decades, they have only recently been used with individuals with ASD.

Current Knowledge Hare et al. (1999) used repertory grids to explore the social root systems of adults with Asperger’s syndrome living in a group home. The residents demonstrated significant difficulties in their lives, including poor social interfacing with caretakers and with each other and some reportedly demonstrated suicidal ideation. After other attempts to evaluate and improve the social inter- action skills and lives of the residents failed, a modified repertory grid process was

social inter- action skills and lives of the residents failed, a modified repertory grid process was attempted. Researchers found that, by engaging participants in the repertory grid process with some modifications to scaffold deficits in executive functioning seen in Asperger’s syndrome, the residents were able to engage in the repertory grid process and establish repertory grids. Data from the repertory grids provided researchers and caretakers with first-person insight into the residents’ social

grids provided researchers and caretakers with first-person insight into the residents’ social cognitive processes that could be used to enhance caretakers’ efficacy of caring for residents. Hess et al. (2018) explored the potential utility of repertory grids with adolescents with ASD. In a study with five adolescents with ASD with average or above-average language and intelligence skills, Hess, Self, and DiLollo found that by providing visual structure and verbal prompting, these adolescents were

and DiLollo found that by providing visual structure and verbal prompting, these adolescents were able to successfully engage in the repertory grid process. Further, the modified repertory grid process provided a venue for participants to describe, via semi-structured conversational discourse within the structured framework of the process, social interactions with people over the course of their lives that shaped how they conceptualized others in social environments. The grid data delineated how

that shaped how they conceptualized others in social environments. The grid data delineated how each individual differentiated friend-from-foe and even how they thought of themselves and their hypothetical ideal selves and what behaviors/aspects of their current social selves they would change to become their ideal social selves. Beyond providing researchers with descriptions of the individuals’ social cognitive personal construct systems, the process also provided insight of surprising depth

social cognitive personal construct systems, the process also provided insight of surprising depth of each individual’s social cognitive awareness that helped researchers better understand why certain social behaviors were or were not observed, further distinguishing the repertory grid assessment from the standard approach.

Future Directions The use of repertory grids with adolescents with ASD with average or above-average intelligence continues to be explored. Further research is needed to determine the utility of repertory grids in a variety of settings (e.g., public schools, group homes, family homes). It will be essential to determine how clinicians can best use the data collected during the repertory grid process to design effective therapeutic interventions for individuals who are receiving therapy services

to design effective therapeutic interventions for individuals who are receiving therapy services and to potentially advocate for treatment for those adolescents with ASD who are not receiving services.

Repetitive Behavior  Definition The term “repetitive behaviors” refers to abnormal behaviors that are characterized by repetition, rigidity, inappropriateness, and lack of adaptability. They include motor stereotyped behaviors, self-stimulatory behaviors, self-injurious behaviors, compulsive or sameness behaviors, and verbal repetitive behaviors such as echolalia. Repetitive behaviors may become problematic when they occupy a significant portion of the individual’s waking hours, interfere with

problematic when they occupy a significant portion of the individual’s waking hours, interfere with participation in other life activities, interfere with appropriate social interactions, disrupt the learning of more appropriate behaviors, or in the case of self-injurious behavior cause significant bodily damage. The specific function of repetitive behaviors in autism is unknown, but hypothesized functions include stress reduction, reward/gratification, and sensory stimulation. Individuals with

functions include stress reduction, reward/gratification, and sensory stimulation. Individuals with autism who engage in repetitive and restricted behaviors often experience anxiety, acute distress, or agitation if the behaviors are interrupted. Restricted and repetitive behaviors and interests are not exclusive to autism spectrum disorders and are often found in individuals with other developmental disorders such as mental retardation/intellectual disability or developmental delays, certain

disorders such as mental retardation/intellectual disability or developmental delays, certain psychiatric disorders including schizophrenia and obsessive-compulsive disorder, several genetic syndromes, and medical conditions such as Parkinson’s disease and Tourette’s disorder and in individuals with sensory disorders such as the visually impaired. Repetitive behaviors are frequently reported by mothers of typically developing children as well, particularly in early childhood. However, there

mothers of typically developing children as well, particularly in early childhood. However, there appear to be qualitative and quantitative differences between repetitive behaviors of children with autism and those who develop typically, in the developmental pattern of such behaviors over time and in the prevalence of repetitive behaviors even compared to children with intellectual disability.

The presence of restricted, repetitive, and stereotyped patterns of behavior, interests, and activities is one of the three core symptom clusters used to diagnosis autistic disorder according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revisions (American Psychiatric Association 2000). Within this domain, the DSM-IV-TR defines repetitive behaviors specifically as “(a) encompassing preoccupation with one or more stereotyped and restricted patterns of

as “(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus; (b) apparently inflexible adherence to specific, non-functional routines or rituals; (c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements; (d) persistent preoccupation with parts of objects.” The proposed DSM-V includes restricted or fixated behavior, interests, and activities as a

objects.” The proposed DSM-V includes restricted or fixated behavior, interests, and activities as a required symptom for a diagnosis of autism spectrum disorder.

The DSM-IV-TR includes the diagnosis of stereotypic movement disorder that is defined as “repetitive, seemingly driven, and non-functional motor behavior (e.g., hand shaking or waving, body rocking, head banging, mouthing of objects, self-biting, hitting own body).” The diagnosis includes a specifier of “with self-injurious behavior” if the repetitive behavior results in bodily damage that requires specific treatment or would require treatment if protective measures were not used. The diagnosis

specific treatment or would require treatment if protective measures were not used. The diagnosis of stereotypic movement disorder also requires that the repetitive behavior is not a symptom of a pervasive developmental disorder such as autistic disorder, not a behavioral tic, not a compulsive behavior that is part of an obsessive-compulsive disorder, and not trichotillomania or hair pulling that is considered an impulse-control disorder not elsewhere classified. The need to exclude or rule out

is considered an impulse-control disorder not elsewhere classified. The need to exclude or rule out other diagnoses that could better account for the observed repetitive or stereotyped behaviors illustrates the lack of specificity of repetitive behaviors to any one disorder.

The ICD-10 (International Classification of Diseases-Tenth Revision) is the current version of the international standard diagnostic classification for all general epidemiological purposes, for health management purposes, and for diagnostic clinical use. Childhood autism is included in the ICD-10 and is diagnosed on the basis of similar symptom clusters to the DSM-IV, one of which is the presence of restricted, stereotyped, and repetitive behavior. The ICD-10 also includes a diagnostic category

of restricted, stereotyped, and repetitive behavior. The ICD-10 also includes a diagnostic category called stereotyped movement disorders. These disorders are characterized by voluntary, repetitive, stereotyped, and nonfunctional movements (often rhythmic) that are not part of a diagnosed psychiatric or neurologic condition. Similar to the DSM-IV-TR, stereotyped movement disorders can be self-injurious or non-self-injurious.

A review of the research on the phenomenology of repetitive behaviors in autism provided useful operationalized definitions of subtypes of repetitive behavior. The authors were careful to try to distinguish among the different subtypes toward the goal of better defining and thus more accurately assessing for the presence of repetitive behaviors in autism (see Table 1). Restricted behavior and ritualistic behavior were later added as specific conceptual subtypes, and Akathisia and dyskinesia have

behavior were later added as specific conceptual subtypes, and Akathisia and dyskinesia have since been removed as subtypes. A five-conceptual groupings model of restricted repetitive behaviors proposed that are assessed with the Repetitive Behavior Scale-Revised (RBS-R) has received empirical support. The five factors that emerged in factor analysis are (1) rituals/sameness, (2) self-injurious behavior, (3) stereotypic behavior, (4) compulsive behavior, and (5) restricted interests. The RBS-R has

(3) stereotypic behavior, (4) compulsive behavior, and (5) restricted interests. The RBS-R has six subscales because it assesses ritualistic behavior and sameness behavior separately although they load as a common factor.

Repetitive behaviors have also been subdivided into two conceptual categories referred to as “lower order” and “higher order.” Lower order repetitive behaviors are repetitive motor movements such as repetitive manipulation of an object, body rocking, and hand flapping or a repetitive self-injurious behavior such as head banging. Higher order repetitive behaviors are more complex and are cognitive behaviors such as circumscribed/restricted interests, insistence on sameness, or compulsions. An

behaviors such as circumscribed/restricted interests, insistence on sameness, or compulsions. An alternative two-factor categorization of repetitive behaviors has also been proposed for young children and has received research support. The two factors are described as a repetitive sensory motor factor (RSM) and an insistence on sameness factor (IS). The RSM factor includes behaviors such as hand/finger movements, complex body mannerisms, repetitive use of objects, and unusual sensory interests.

movements, complex body mannerisms, repetitive use of objects, and unusual sensory interests. The IS factor includes behaviors such as rituals and compulsions and resistance to or distress with change. It is suggested that RSM behaviors are more common in very young children than IS behaviors.

| Classification | Definition | |---|---| | Akathisia | Movement disorder that can manifest as repetitive and restless movements such as pacing or a hyperkinetic restless state such as the inability to remain still when sitting or standing |
| Compulsions | Repetitive intentional behaviors that appear to follow certain rules |

| Compulsions | Repetitive intentional behaviors that appear to follow certain rules |
| Dyskinesia | Repetitive and involuntary movements that can be subdivided into three types: nonrhythmic and jerky movements (chorea) or slow, writhing movements (athetosis), or slow and sustaining muscle tensing (dystonia) |

| Echolalia | Repetitive use of speech immediately, such as repeating all or part of what was just heard or after a delay. Echolalia can be “parrot speech” defined as repeating whatever is heard and “perseverative speech” in which a small number of words or phrases is repeated in a ritualistic or persistent manner |
| Obsessions | Repetitive, persistent thoughts, impulses, or images that are experienced as intrusive or inappropriate and that caused marked anxiety or distress in the individual |

| Perseveration | Behavioral responses in which nonaberrant adaptive responses are repeated beyond what is necessary to reach a goal. This can include the perseveration of attention |
| Restricted behavior | Behavior with a limited range of focus, interest, or activity |
| Ritualistic behavior | Performing activities of daily living in a similar manner |

| Ritualistic behavior | Performing activities of daily living in a similar manner |
| Sameness | Involves overall repetitive routines and preferences rather than the discrete repeated acts or thoughts that define compulsions or obsessions |
| Self-injury | Repetitive motor movements that result in bodily injury or have the potential to result in bodily injury to the individual engaging in the behavior |

| Stereotypy | Repetitive and seemingly purposeless body movements, movements of body parts, or use of the body to generate movement in objects |
| Tics | Often considered involuntary movements, tics are repetitive behaviors that can be simple or complex and that are executed repeatedly in an “explosive” manner and out of context |

Historical Background Repetitive behaviors as a core feature of autism were recognized as early as 1943 when Dr. Leo Kanner first described case studies of 11 children that he conceptualized as having an “autistic disturbance of affective contact.” These children had a “dread of change and incompleteness” that led to monotonous and repetitive behaviors and limitations in the range of spontaneous activity. Rituals had to be carried out from beginning to end without variation. Kanner also

activity. Rituals had to be carried out from beginning to end without variation. Kanner also described the anxiety and distress that the children seemed to experience whenever the sameness of a chain of behaviors, including verbal behaviors, was broken. Kanner hypothesized that these repetitive behaviors and the insistence on sameness were a part of the child’s “good relation to objects” as opposed to their lack of interest in and poor relations to people. In 1944, Dr. Hans Asperger, for whom

to their lack of interest in and poor relations to people. In 1944, Dr. Hans Asperger, for whom Asperger’s disorder is named, described four boys ages 6–11 years who had good language and cognitive skills, yet marked impairment in social interaction as having “autistic psychopathy” or more accurately translated as “autistic personality disorder.” Asperger also described that these four and a larger sample of children also had preoccupations and unusual circumscribed interests that were the

larger sample of children also had preoccupations and unusual circumscribed interests that were the focus of much of their life and that interfered with the acquisition of necessary skills. Asperger also noted that similar traits were often seen in other family members, particularly fathers.

Current Knowledge Epidemiology of Repetitive Behaviors Because the presence of restricted or circumscribed interests or repetitive or stereotyped behaviors is part of the diagnostic criteria for autism, it is understood that the prevalence of repetitive behaviors of some kind is 100% in this population which is generally supported by research. Research suggests the possibility of age-related differences in the patterns of particular restrictive repetitive behaviors (RRBs) in individuals with

in the patterns of particular restrictive repetitive behaviors (RRBs) in individuals with autism spectrum disorders, a possible relationship between level of intellectual functioning and patterns of RRBs, and possible interactions between age and level of functioning. However, research findings are inconsistent and seem to depend upon the age range of the sample, the specific subtypes of repetitive behaviors, and the instrument used to measure the behaviors.

Age. In general, RRBs seem to be less severe and less frequent in older compared to younger children with autism. Similarly, adults with autism display fewer repetitive behaviors than children, suggesting that RRBs may decrease over the lifespan. Younger children with ASD may be more likely to exhibit motor and sensory repetitive behaviors, whereas older children may be more likely to exhibit more complex repetitive behaviors. Among specific subclasses of RRBs, stereotyped movements and

more complex repetitive behaviors. Among specific subclasses of RRBs, stereotyped movements and restricted range of interests appear to be less frequent among older individuals, whereas rituals/sameness appears to be more frequent in this group. Self-injurious behaviors and compulsive behavior subtypes do not show differences across age groups.

Level of functioning. Research findings have also suggested that the expression of RRBs may be influenced by level of functioning. As described above, repetitive behaviors have been distinguished into two subcategories. The first is lower order behaviors that are characterized by repetition of body or part of body movement such as stereotyped movements, repetitive manipulations of objects, and self-injurious behavior. And the second, higher order repetitive behaviors that are more complex and are

behavior. And the second, higher order repetitive behaviors that are more complex and are more “cognitive” such as object attachments, sameness, and circumscribed interests. Evidence has been offered that lower functioning individuals such as those with a more severe or profound intellectual disability are more likely to engage in lower order repetitive behaviors, whereas higher functioning individuals are more likely to engage in higher order repetitive behaviors that are more cognitive in

are more likely to engage in higher order repetitive behaviors that are more cognitive in nature. However, lower order and higher order repetitive behaviors have been found to co-occur, and the distinction between higher and lower order behaviors does not hold consistently. In lower functioning individuals, suggested age-related differences in patterns of RRBs may be less pronounced. A comorbid diagnosis of intellectual disability is associated with demonstrating more repetitive behaviors than

of intellectual disability is associated with demonstrating more repetitive behaviors than a diagnosis of autism alone as is engaging in more atypical behaviors. For the majority of RRBs, intellectual ability seems more strongly negatively correlated to the prevalence of RRBs in older compared to younger children. Other forms of RRB such as insistence on sameness or the need for routines do not appear to be related to level of intellectual functioning.

Assessment Instruments for Repetitive Behavior While multiple assessment instruments contain items or subscales that assess for the presence of specific repetitive behaviors, a few instruments have been developed specifically for this purpose. Some of them are briefly described here. The Repetitive Behavior Scale-Revised (RBS-R) is a 43-item questionnaire that was designed to assess for the breadth and severity of restricted and repetitive behaviors in autism using a 0–3 point Likert scale. The

and severity of restricted and repetitive behaviors in autism using a 0–3 point Likert scale. The empirically validated measure includes six subscales that measure six different dimensions or conceptual groupings of restrictive and repetitive behavior. These are (a) stereotyped behavior, (b) self-injurious behavior, (c) compulsive behavior, (d) ritualistic behavior, (e) sameness behavior, and (f) restricted behavior. The current scoring for the RBS-R recommends using five empirically derived

(f) restricted behavior. The current scoring for the RBS-R recommends using five empirically derived subscales based on 38 of the 43 items. The Repetitive Behavior Questionnaire-2 (RBQ-2) is a 20-item parent questionnaire based on a four-factor model of repetitive behaviors that includes unusual sensory interests, repetitive motor movements, rigidity/adherence to routine, and preoccupation with restricted patterns of interest. There is also support that items can be grouped according to two

restricted patterns of interest. There is also support that items can be grouped according to two factors with motor and sensory subscales combining and rigidity and insistence on sameness subscales combining. This measure has been used to investigate the frequency of autistic-like repetitive behaviors in typically developing children. The Behavior Flexibility Rating Scale-Revised describes 16 situations that can be rated by a parent or caregiver of a child with developmental disabilities as

situations that can be rated by a parent or caregiver of a child with developmental disabilities as problematic for an individual on a scale of 0–2. Factor analysis suggests that three factors are assessed by the scale: flexibility toward objects, flexibility toward the environment, and flexibility toward persons. The Behavior Problems Inventory (BPI-01), developed by Rojahn and colleagues, is a 52-item behavior rating instrument that assesses for self-injurious, aggressive/destructive, and

a 52-item behavior rating instrument that assesses for self-injurious, aggressive/destructive, and stereotypic behavior in individuals with intellectual and other developmental disabilities. Behaviors are rated for both frequency and severity, and information is provided by care providers. The stereotyped behavior subscale contains 25 items. The Autism Diagnostic Interview-Revised (ADI-R) has been used in research as well as for assessment, diagnosis, treatment, and educational planning for

been used in research as well as for assessment, diagnosis, treatment, and educational planning for individuals with an autism spectrum disorder. The ADI-R is administered as a clinical interview and can be used with children and adults. The scale consists of 93 items that focus on three domains of functioning, one of which is restricted, repetitive, and stereotyped behaviors and interests.

Treatment Repetitive behaviors are currently conceptualized as a complex interaction between biology and environment so that treatment models are generally integrated and can be a combination of medication and behavioral treatments or environmental manipulations. Three general classes of medications have received some empirical support for the treatment of repetitive or stereotyped behaviors, medications that affect the neurotransmitters dopamine such as typical and atypical antipsychotics,

medications that affect the neurotransmitters dopamine such as typical and atypical antipsychotics, those that affect the neurotransmitter serotonin such as the serotonin reuptake inhibitors or SSRIs, and those that affect the opiate system, most specifically naltrexone. Applied behavior analysis (ABA) is the most widely supported and scientifically validated treatment for core symptoms of autism spectrum disorders, including repetitive behaviors. ABA is the application of principles of learning

disorders, including repetitive behaviors. ABA is the application of principles of learning and motivation to obtain changes in behavior. It includes functional assessment, a systematic way of understanding the purpose or function of a behavior and its contingencies of reinforcement, as well as highly structured reinforcement-based intervention methods. Behavioral intervention can focus on increasing the frequency, intensity, or range of adaptive and prosocial behaviors; decreasing the

increasing the frequency, intensity, or range of adaptive and prosocial behaviors; decreasing the frequency, intensity, and range of repetitive, stereotyped, or self-injurious behaviors; teaching new skills; and generalizing skills across situations. Reinforcement-based techniques are generally used in behavioral treatment as are changes to the environment to remove cues that trigger repetitive behaviors or to provide environmental cues that the behavior is appropriate.

Future Directions While the presence of repetitive or stereotyped behaviors or restricted range of interests will likely remain a diagnostic criteria for autism in the DSM-V, it is not likely that the presence or absence of RRBs will become a key diagnostic indicator since most RRBs can be found in other subgroups of children and even in typically developing children. It is more likely that the frequency and intensity of RRBs, the degree of distress caused when the behavior is interrupted, and

and intensity of RRBs, the degree of distress caused when the behavior is interrupted, and the amount of dysfunction or disruption to learning that occurs as a result of the RRBs will continue to be what distinguishes children with ASDs from typically developing children or from children with other disorders. What is clear is that RRBs are an underresearched core symptom of autism spectrum disorders and can have a significant detrimental effect on learning more adaptive behaviors and result in

and can have a significant detrimental effect on learning more adaptive behaviors and result in physical injury. Additional research on the specificity of RRBs in autism spectrum disorders, how specific repetitive behaviors may change over the lifespan, and how specific individual, demographic, or environmental factors might increase the incidence of RRBs in this population is needed.

Residual Autism  Definition A concept introduced by, and limited to, the third edition of the Diagnostic and Statistical Manual (DSM-III) in 1980 to encompass individuals who once met criteria for infantile autism but no longer did so. The inclusion of this term reflected the lack of developmental orientation in the first official definition of infantile autism in DSM-III and was meant to address the issue of developmental change. This term quickly proved unsatisfactory in many ways since the

the issue of developmental change. This term quickly proved unsatisfactory in many ways since the problems of most individuals with autism (or what now is termed autistic disorder) were often quite significant even if dif- ferent than those they first exhibited as young children. In the following (1987) edition of DSM, the definition of autism was considerably changed to reflect a broader developmental orientation. In some ways the concept might now seem more applicable to the small but growing

orientation. In some ways the concept might now seem more applicable to the small but growing number of individuals who no longer meet strict criteria for autistic disorder/autism spectrum disorder – a group that has also been termed “optimal outcome.” Such individuals often continue to exhibit subtle, or not so subtle, problems in social communication and learning.

Resilience in Parents of Children with Autism Spectrum Disorder  Definition Resilience is defined as a “positive adaptation within the context of significant adversity.” Rutter described resilience as a response to risk where “some people succumb to stress and adversity whereas others overcome life hazards.” Resilience also refers to “the ability to withstand hardship and rebound from adversity, becoming more strengthened and resourceful.” These definitions share two similarities: (1) the

becoming more strengthened and resourceful.” These definitions share two similarities: (1) the presence of some type of adversity or risk factor and (2) positive outcomes after exposure to risk or adversity. Moreover, inherent in each definition is the conceptualization of resilience as a process as opposed to a personality characteristic that an individual has. Given the multidimensional nature of the construct of resilience, it is also important to define the various components of resilience.

of the construct of resilience, it is also important to define the various components of resilience. Risk or adversity refers to “negative life circumstances that are known to be statistically associated with adjustment difficulties.” In the context of parents raising a child with ASD, possible risk factors may be the severity of the child’s ASD symptoms, presence of comorbid behavioral or mental health problems, the total number of children with ASD, or the quality of the marital relationship.

health problems, the total number of children with ASD, or the quality of the marital relationship. The outcome associated with process of resilience is that of positive adaptation, which is defined as “behaviourally manifested social competence or success at meeting stage-salient developmental tasks.” It is also possible that the reduction or absence of negative outcomes may be another outcome of resilience. Possible indicators of positive adaptation include high levels of life satisfaction,

of resilience. Possible indicators of positive adaptation include high levels of life satisfaction, psychological well-being, and positive affect. Similarly, lower levels of depressive symptoms, anxiety symptoms, and negative affect may also be considered evidence of positive adaptation.

A key component in the process of resilience is the presence of protective factors. A protective factor is generally considered to be an attribute that promotes positive adaptation. For parents of children with ASD, this includes, but is not limited to, factors such as social support, personality traits, cognitive appraisals, and religiosity/spirituality. Protective factors operate in a variety of ways to enhance positive adaptation. In the compensatory model of resilience, the protective

of ways to enhance positive adaptation. In the compensatory model of resilience, the protective factor has a direct effect on the outcome of interest. For example, parents of children with ASD may report higher levels of stress compared to parents of neurotypical children, but the presence of a protective factor (e.g., spirituality, social support, etc.) may help compensate for the negative effects typically associated with raising a child with ASD. This model of resilience is typically tested

typically associated with raising a child with ASD. This model of resilience is typically tested using multiple regression models. In the protective model of resilience, the protective factors are interactive effects wherein individuals who possess the attribute, as compared to those without the attribute, are less affected by the risk or adversity. In the context of ASD, parents of children with high levels of behavior problems and greater social support may report higher levels of life

with high levels of behavior problems and greater social support may report higher levels of life satisfaction as compared to parents with low levels of social support. There are two additional protective models: (1) protective-stabilizing and (2) protective-reactive. In a protective-stabilizing model, individuals with the protective attribute display consistent levels of positive adaptation despite adversity. The protective-reactive model, in contrast, states that when adversity increases,

adversity. The protective-reactive model, in contrast, states that when adversity increases, individuals with the protective attribute will show increasing levels of positive adaptation. The final set of resilience models are referred to as vulnerability models. A vulnerability factor is one in which individuals with the attribute show higher levels of negative outcomes when faced with adversity. Parents of children with more severe ASD symptoms may report higher levels of depressive symptoms

Parents of children with more severe ASD symptoms may report higher levels of depressive symptoms when they also report higher levels of pessimism.

Historical Background The construct of resilience has a long history in the study of children and adolescents; however, in the context of parenting children with autism spectrum disorder (ASD), the body of research is smaller. Raising a child with autism spectrum disorder (ASD) presents unique challenges and may negatively impact parental well-being. Interviews with parents of children with ASD describe being dissatisfied with the diagnostic process, having to go through a period of grief after

being dissatisfied with the diagnostic process, having to go through a period of grief after the diagnosis, and then continuing to experience mental health problems throughout their child’s life. The financial burden associated with caring for a child with ASD is also substantial. In general, mothers of children with ASD report lower levels of psychological well-being compared to mothers of children with other developmental disabilities. Thus, for a long period of time, studies of parents of

with other developmental disabilities. Thus, for a long period of time, studies of parents of children with ASD were primarily focused on examining negative outcomes, such as parenting stress and mental health problems. For example, higher levels of child ASD symptom severity were associated with poorer psychological well-being in mothers of children with ASD. Children’s difficulties in the domain of social relatedness were associated with increased parenting stress. Children with ASD often

of social relatedness were associated with increased parenting stress. Children with ASD often display comorbid behavior problems (e.g., aggression), and the presence of these behaviors consistently predicts negative outcomes in parents. Characteristics of the parents may also exacerbate negative outcomes. For example, the broad autism phenotype (BAP) is a constellation of subclinical characteristics that indicates genetic liability to ASD. Individuals with high levels of the BAP typically have

that indicates genetic liability to ASD. Individuals with high levels of the BAP typically have social abnormalities, a rigid personality, and pragmatic language difficulties. Among mothers of children with ASD, BAP symptoms are associated with elevated depressive symptoms. Each cluster of BAP symptoms was associated with increased depressive symptoms.

The quality of parents’social relationships may also be negatively impacted when raising a child with ASD. Parents of children with ASD reported less marital satisfaction, lower marital quality, and a higher divorce rates compared to parents of neurotypical (NT) children. In addition, parents of children with ASD have more severe conflict and fewer positive couple interactions when compared to parents of NT children. Although the aforementioned body of research suggests that raising a child

parents of NT children. Although the aforementioned body of research suggests that raising a child with ASD is challenging, there is considerable individual variability, with some parents reporting positive outcomes. In a seminal review paper, Hastings and Taunt called for more research examining positive factors associated with parenting a child with a developmental disability, including ASD. This includes identifying factors (i.e., protective factors) that lead to positive outcomes in the

This includes identifying factors (i.e., protective factors) that lead to positive outcomes in the context of the challenges associated with raising a child with a disability. A focus on positive adaptation is consistent with the construct of resilience in which the outcomes are expected to index competence (i.e., increase in positive outcomes or a decrease in negative outcomes).

Current Knowledge Researchers have identified a variety of protective factors associated with positive adaptation in parents of children with ASD. As discussed above, a protective factor may have a direct or interactive effect on adaptation in the context of risk. These protective factors are varied and include social support, characteristics of the parent, religiosity/spirituality, coping styles, and cognitive appraisals. The current state of knowledge of each of these protective factors is

and cognitive appraisals. The current state of knowledge of each of these protective factors is discussed below.

Social Support. Social support refers to the formal (e.g., government agencies) and informal (e.g., friends, family, and social media) supports that assist parents in coping with the challenges associated with raising a child with ASD. A review of the literature summarized research showing that greater social support was associated with less stress among parents of children with ASD. Similar associations have also been found among mothers of adolescent and adult children with ASD. For example,

have also been found among mothers of adolescent and adult children with ASD. For example, a larger social support network predicted improvements in psychological well-being over an 18-month period. In more recent years, mothers’satisfaction with social support was associated with lower levels of maternal distress. Social support can be provided by a variety of sources. Ekas et al. (2010) examined support received by friends, family, and romantic partners. Higher levels of family support (e.g.,

support received by friends, family, and romantic partners. Higher levels of family support (e.g., grandparents, aunts, uncles, other children) were associated with lower levels of maternal depression, stress, and negative affect among mothers of children with ASD. Of particular interest to the construct of resilience, family support was also associated with higher levels of positive affect, life satisfaction, and psychological well-being via an increase in optimism. Social support can also be

satisfaction, and psychological well-being via an increase in optimism. Social support can also be formal in nature. Some research shows that formal support services may be unhelpful or have no effect on parent outcomes. However, one study found that families receiving government-funded services (i.e., Medicaid waivers) reported having better emotional and physical health outcomes compared to families who were not receiving services. Parent education and support groups are additional forms of

who were not receiving services. Parent education and support groups are additional forms of formal support services that show promising effects on promoting positive adaptation among parents of children with ASD. Taken together, this body of research demonstrates that social support serves as a protective factor for parents of children with ASD.

Parent Characteristics. Researchers have studied whether characteristics of the parent influences their positive adaptation. Characteristics that have received empirical attention include dispositional traits such as optimism and hardiness and cognitive ways of thinking (e.g., locus of control, self-efficacy). Among parents of children with ASD, optimism has emerged as a robust predictor of outcomes. Optimism refers to the tendency to expect positive outcomes in life. Ekas et al. (2010) found

Optimism refers to the tendency to expect positive outcomes in life. Ekas et al. (2010) found higher levels of optimism were associated with increased positive affect, life satisfaction, and psychological well-being in mothers of children with ASD. In a study of Hispanic parents, mothers and fathers reported similar levels of optimism and increased optimism predicted lower levels of depressive symptoms. Hardiness is a personality trait that consists of high levels of commitment, control, and

symptoms. Hardiness is a personality trait that consists of high levels of commitment, control, and challenge. Thus, during stressful situations, hardy individuals perceive the situation as interesting, they focus on the opportunity for growth, and they attempt to control the situation. Weiss (2002) found that high levels of hardiness were associated with lower levels of depression, anxiety, and depersonalization in mothers of children with ASD. Hope is another dispositional characteristic that

in mothers of children with ASD. Hope is another dispositional characteristic that may serve as a protective factor. Individuals with high levels of hope are able to generate pathways to reach goals and feel that they are able to utilize these pathways. For mothers of children with ASD, high levels of hope are associated with less worry, less depressive symptoms, and lower levels of loneliness. Finally, recent research has begun to explore gratitude as a possible protective factor for parents

Finally, recent research has begun to explore gratitude as a possible protective factor for parents of children with ASD. Similar to hope, gratitude is considered to be a character strength and refers to the tendency to be thankful for something or someone in one’s life. While there are no studies examining trait levels of gratitude, a study implementing a gratitude intervention found that mothers who wrote letters of gratitude reported increases in psychological well-being across the course of

who wrote letters of gratitude reported increases in psychological well-being across the course of the intervention.

In addition to dispositional traits, parents’ ways of thinking may also serve as protective factors. For example, mothers and fathers of children with ASD who had an internal locus of control (i.e., believing that one’s behavior can control events) were better able to cope with parenting stress. Self-efficacy is an individual’s confidence in their ability to succeed at tasks, goals, and challenges. Kuhn and Carter (2006) found that mothers of children with ASD with greater self-efficacy reported

Kuhn and Carter (2006) found that mothers of children with ASD with greater self-efficacy reported lower levels of depressive symptoms and stress. Parenting self-efficacy refers to a person’s confidence in their ability to succeed in the domain of parenting. Rezendes and Scarpa (2011) found high parenting self-efficacy predicted less depressive and anxiety symptoms in mothers of children with ASD. Taken together, the available body of research suggests that characteristics of the parent may confer

together, the available body of research suggests that characteristics of the parent may confer protection against the challenges associated with parenting a child with ASD.

Religiosity and Spirituality. Decades of research in the general population show that religiosity and spirituality are associated with better psychological and physical health. In the context of raising a child with ASD, however, these associations are less studied. Coulthard and Fitzgerald (1999) found that parents receive comfort from their religious beliefs and engagement in prayer, and these were associated with better physical and mental health outcomes. In another study, researchers

were associated with better physical and mental health outcomes. In another study, researchers examined multiple dimensions of religiosity and spirituality and found that spirituality was a better predictor of positive outcomes. This is consistent with research showing that spiritual wellness (i.e., reporting high levels of meaning and purpose in life) is associated with less depressive symptoms. Spirituality may be efficacious because it influences the ways in which mothers interpret their

Spirituality may be efficacious because it influences the ways in which mothers interpret their child’s disability. Research in this area is relatively sparse; however, the limited research suggests that spirituality may be a particularly important protective factor for parents of children with ASD.

Coping Styles. Coping refers to an individual’s behavioral and cognitive efforts to manage stressful situations that exceed the individual’s personal resources. In stressful situations, an individual can utilize either of two coping strategies: (1) problem-focused coping, wherein an individual engages in problem-solving to prevent the situation from happening again, and (2) emotion-focused coping, in which the person tries to regulate the emotions associated with the situation. In the process

in which the person tries to regulate the emotions associated with the situation. In the process of resilience, an individual’s coping style may be a protective factor that is utilized on a day-to-day basis to cope with the adversity being faced. Among parents of children with ASD, Hastings et al. (2005) identified four categories of coping strategies: (1) active avoidance, (2) problem-focused, (3) religious denial, and (4) positive coping. In this study, mothers who engaged in problem-focused

religious denial, and (4) positive coping. In this study, mothers who engaged in problem-focused coping (i.e., planning, active coping, using social support) reported less depressive symptoms, whereas mothers who utilized active avoidance coping (i.e., substance use, behavioral disengagement, venting, and distraction) were more likely to report increased depressive symptoms. The use of problem-focused coping was also found to be associated with greater maternal well-being. Similarly, a study of

coping was also found to be associated with greater maternal well-being. Similarly, a study of Hispanic mothers and fathers of children with ASD found that the use of positive coping strategies (e.g., planning, reframing, active coping) was associated with less depressive symptoms, whereas avoidance coping predicted greater depressive symptoms. In sum, the use of problem-focused coping strategies appears to promote positive adaptation among parents of children with ASD.

Cognitive Appraisals. How an individual appraises the adversity they are experiencing may impact their adaptation. When faced with adversity, individuals may engage in positive reinterpretation or attempt to find meaning in the situation. Benefit finding is a form of positive reinterpretation wherein an individual is able to find positive contribution in negative or traumatic life events. Among parents of children with high-functioning ASD, higher levels of benefit finding were associated with

parents of children with high-functioning ASD, higher levels of benefit finding were associated with greater positive affect. Benefit finding was associated with greater family cohesion and romantic relationship satisfaction. Parents who were asked to write about the benefits of caregiving reported lower anxiety scores following an intervention. Parents may also make positive reinterpretations as it relates to the contributions their child with ASD makes to their lives. The positive contributions

relates to the contributions their child with ASD makes to their lives. The positive contributions can include the child bringing the family closer together, contributing to the parent’s personal growth, the child being a source of pride, and providing happiness and fulfilment to the parent. Mothers of preschool children with ASD reported more positive contributions compared to fathers, and these positive contributions were associated with lower parenting stress for mothers. Mothers who reported

contributions were associated with lower parenting stress for mothers. Mothers who reported greater positive contributions also reported lower levels of anxiety. In sum, how a parent appraises their child’s ASD diagnosis may help to promote more positive outcomes.

Future Directions Parents of children with ASD experience higher levels of parenting stress, which can negatively impact their well-being in several domains. While many families face these challenges, protective factors may act as a buffer to provide parents of children with ASD with the capabilities to better cope with stressors that affect their well-being. However, the scope of resilience research is limited as most of these studies focus solely on mothers of children with ASD, employ a

research is limited as most of these studies focus solely on mothers of children with ASD, employ a cross-sectional design, and rely exclusively on self-reports of parent well-being. Moreover, researchers have focused almost exclusively on compensatory models and have neglected additional resilience models that examine interactive effects. As such, when examining resilience in families of children with ASD, future researchers should aim to (1) include fathers in their samples, (2) examine

with ASD, future researchers should aim to (1) include fathers in their samples, (2) examine resilience as a process that unfolds over time and employ longitudinal study designs, (3) use multi-method studies which utilize observations of parent-child interactions, and (4) specify protective models of resilience. Studies examining the resilience process and outcomes for fathers are scarce. Fathers of children with ASD are often not included in parenting studies despite fathers playing an

Fathers of children with ASD are often not included in parenting studies despite fathers playing an important role in their child’s development. As a result, not much is known about how protective factors operate for these fathers, as fathers may respond to situations differently than mothers. Understanding the resilience processes for fathers of children of ASD has important implications for parent-focused interventions, as improved interventions can lead to better outcomes for both parents

interventions, as improved interventions can lead to better outcomes for both parents and their child with ASD.

Additionally, when examining resilience in the context of ASD, researchers should focus on resilience as a process that unfolds over time and, thus, utilize longitudinal methodologies. As most current research employs a cross-sectional examination of resilience, it would be difficult to determine if protective factors are more effective at different points in their child’s life. By exploring resilience longitudinally, researcher may come to a better understanding of when resilience has a

resilience longitudinally, researcher may come to a better understanding of when resilience has a greater impact on parent outcomes which may provide clinicians with insight as to the best times to provide services and interventions for families of children with ASD. Researchers have exclusively used parent report to examine resilience and protective factors in parents of children with ASD. However, multi-method research may provide further insights into how protective factors and positive

multi-method research may provide further insights into how protective factors and positive adaptation impact other domains of parent well-being, including the quality of parenting. Thus, it would be beneficial for future research to include additional methods, such as observations, to determine how protective factors impact the quality of parent-child interactions. Finally, the majority of research discussed above focused on the direct impact of protective factors on parent adaptation (e.g.,

discussed above focused on the direct impact of protective factors on parent adaptation (e.g., compensatory models of resilience). However, several resilience models describe protective factors as providing a buffer against the effects of adversity. In these models, protective factors interact with adversity to impact outcomes. Statistically, these resilience models can be tested using moderation. For example, in a study of mothers of children with ASD, daily positive affect buffered the

For example, in a study of mothers of children with ASD, daily positive affect buffered the negative impact of stress but only on days of low to moderate levels of stress. Similarly, social support and coping styles moderated the association between stressful life events and negative outcomes for mothers and fathers of children with ASD. Certain coping styles buffered the negative effects of child ASD symptoms severity. Further research is needed with additional protective factors, such as

child ASD symptoms severity. Further research is needed with additional protective factors, such as optimism, hope, and cognitive appraisals.

Resource Room  Definition A resource room is defined as a separate classroom for special education outside the mainstream classroom. In a resource room, students with disabilities leave the general education classroom for a specified period of time to attend the resource room and receive specialized instruction as designated by the goals and objectives outlined in their Individual Education Plans (IEP). The instruction may be individualized or presented in a small group format.

Respite Care  Definition Individuals with ASDs typically require more intensive, individualized attention to meet specific social and communication needs as well as address behavioral excesses. As a result, family members of individuals with ASDs often report having less time for other familial and individual responsibilities and needs and report experiencing higher levels of stress. Thus, respite care is a service designed to reduce caregiver stress by affording a period of time in which the

care is a service designed to reduce caregiver stress by affording a period of time in which the primary caregiver’s role is temporarily filled by a provider who interacts with and meets the needs of the individual. This is not only beneficial for caregiver(s) but may further develop and generalize interpersonal skills for individuals with ASDs. Unfortunately, not everyone who needs respite services receives them. Funding for respite care is allocated through general federal government, federal

receives them. Funding for respite care is allocated through general federal government, federal Medicaid, state, and private grants. A developmental disability diagnosis, documentation of IQ score, an adaptive functioning assessment, and a psychosocial assessment are typically needed with further consideration given to financial need, enrollment in other services, and availability of funds. However, not all ASDs are weighted equally. Individuals with Asperger syndrome and pervasive

funds. However, not all ASDs are weighted equally. Individuals with Asperger syndrome and pervasive developmental disorder not otherwise specified may be ineligible through certain funding sources. Additionally, many grant sources are aimed solely at assisting families caring for children with ASDs. However, individual state departments on aging can be helpful with linking resources for older adults with ASDs. The Lifespan Respite Care Act of 2006 was enacted to establish a formal program to

with ASDs. The Lifespan Respite Care Act of 2006 was enacted to establish a formal program to assist family caregivers in accessing affordable and high-quality respite care. Respite can be provided at home, a day center, or a residential program and may last for a few hours, a day, or longer. Standards of respite care include meeting with a family prior to the provision of care in order to address an individual’s specific needs and routines. This is essential to maintaining continuity, inherent

an individual’s specific needs and routines. This is essential to maintaining continuity, inherent to positive outcomes when working with individuals with ASDs. While standards of respite care are necessary for quality of care for an individual with an ASD, the primary objective of respite is a decrease in stress levels of the caregiver, so that the individual may resume and provide care-giving responsibilities at the highest level. This may be achieved through any variety of caregiver

responsibilities at the highest level. This may be achieved through any variety of caregiver activities. Respite breaks may be used to attend to an emergency, responsibility, or task, focusing more time in a relationship with another child or family member, or recreation, such as going to see a movie, spending time with friends, or going for a walk. Benefits of respite care for family caregivers include reduced level of stress and/or depression, greater sense of control, improved family

include reduced level of stress and/or depression, greater sense of control, improved family functioning, feeling of rejuvenation from having time to self, and more opportunities for interpersonal connectedness through social outings.

Respondent Behavior  Definition Respondent behavior is the term used to describe behavior which is elicited, or brought about, by preceding stimulus events in the environment. Best known by the work of Ivan Pavlov, respondent behavior can be conceptualized as a behavior in which an organism engages in as a result of a preceding event occurring in its environment. Also referred to as a stimulus–response paradigm, respondent behaviors primarily refer to reflexive behavior, or innate behaviors

paradigm, respondent behaviors primarily refer to reflexive behavior, or innate behaviors which individuals come equipped with. These behaviors are believed to have a protective value for the organism and its survival. A commonly used example is the behavior of eye blinking in response to a puff of air. In his work, Pavlov determined that respondent behaviors can come under the control of preceding stimuli. He discovered that when a tone was repeatedly presented to a dog along with a piece of

stimuli. He discovered that when a tone was repeatedly presented to a dog along with a piece of meat, the dog learned to associate the tone with the meat and eventually began to salivate to the sound of the tone alone. No longer requiring the meat to be present, the tone itself gained the ability to elicit salivation behavior. Pavlov’s work, along with the work of other early behaviorists, demonstrated that reflexive behaviors, or behaviors a species is born with, are both elicited by stimuli

that reflexive behaviors, or behaviors a species is born with, are both elicited by stimuli which preceded it, and can be conditioned to occur or not occur. Respondent behaviors are important to consider in the context of interventions and supports for all individuals including those with autism spectrum disorder (ASD). Consider the student who has an auditory sensitivity attending PE class. Upon the PE teacher blowing their whistle (stimuli) the student may cover their ears (respondent

Upon the PE teacher blowing their whistle (stimuli) the student may cover their ears (respondent behavior) in response to the loud sound. Through the process of respondent conditioning, it is likely that the student will begin to cover their ears (respondent behavior) upon sight of the whistle (stimuli) without the teacher having to blow it. Aiding that individual to successfully navigate PE class and instances of the whistle blowing may be an important outcome for their education, but

PE class and instances of the whistle blowing may be an important outcome for their education, but understanding the process by which ear covering occurs is an important first step. Respondent behaviors are often the target of interventions to increase the health, happiness, and success of individuals with ASD as well. As an example, systematic desensitization can increase health behaviors such as completion of dental procedures. When targeting the conditioned respondent behavior and the

such as completion of dental procedures. When targeting the conditioned respondent behavior and the embedded learning process, interventionists can better support individual needs.

Response Cost  Definition Response cost is a procedure in which an individual loses a specified amount of a previously earned reinforcer contingent upon a behavior targeted for reduction. It is often described in terms of penalties, fines, or fees and can be found in a behavior reduction plan for persons with autism. The term and procedure originated in a basic laboratory study to describe a contingency in which a person’s response resulted in the removal of a point from an automated point

contingency in which a person’s response resulted in the removal of a point from an automated point counter. Since then, it has been examined in applied research and used to reduce or eliminate a large number of behavior problems across a large number of populations. It is most frequently found as a component in token, point, and level systems, but has also been successfully used as a stand-alone procedure. Because it is a punishment procedure, it is vulnerable to the same unwanted side effects

procedure. Because it is a punishment procedure, it is vulnerable to the same unwanted side effects as most punishment (e.g., emotional reaction, behavior change that is situation-specific), but because it is almost always coupled with positive reinforcement, these risks can be reduced.

Response Interruption/Redirection  Definition Response interruption and redirection (RIRD) is an applied behavior analytic procedure commonly implemented to treat stereotypic behavior and other responses thought to be maintained by the sensory consequences of the response (i.e., automatic reinforcement). RIRD entails interrupting each instance of the target behavior and redirecting to an appropriate response. For example, if a child emits stereotypic vocalizations, then a caregiver asks the

response. For example, if a child emits stereotypic vocalizations, then a caregiver asks the child social questions (e.g., “what’s your name?” “where do you live?” “what’s your brother’s name?”) they have readily answered in the past. Once the child answers the questions in the absence of stereotypic vocalizations, the caregiver provides brief praise and ceases asking the child questions. RIRD and a related procedure, response blocking, has produced significant change for both motoric and vocal

a related procedure, response blocking, has produced significant change for both motoric and vocal stereotypic responses as well as with automatically reinforced self-injurious behavior. However, RIRD is not always necessary to decrease stereotypy when appropriate behavior is promoted or when stereotypy is not interfering with social functioning. When RIRD is used it should be combined with instruction and reinforcement for appropriate behavior that occurs in situations in which stereotypy is

and reinforcement for appropriate behavior that occurs in situations in which stereotypy is interfering. Colón et al. (2012) directly introduced verbal operant training in an effort to increase appropriate vocalizations and decrease vocal stereotypy. Vocal stereotypy persisted at clinically unacceptable levels for two of the three participants. RIRD was then introduced and was effective at decreasing stereotypy but was unnecessary for the other participant. Love et al. (2012) offered

at decreasing stereotypy but was unnecessary for the other participant. Love et al. (2012) offered noncontingent access to matched stimulation (toys that produced sound) as a means of providing an alternative activity while evaluating whether a decrease in vocal stereotypy would occur concomitantly. Matched stimulation and RIRD were then compared as a combined package and alone. RIRD was necessary to decrease vocal stereotypy to clinically significant levels and appropriate behavior continued to

to decrease vocal stereotypy to clinically significant levels and appropriate behavior continued to occur when RIRD was used while matched activities were present. Although RIRD has been shown to be an effective procedure, Duffy-Cassella et al. (2011) and Miguel et al. (2009) suggested that RIRD may require effortful treatment application particularly if an individual initially engages in high rates of stereotypy. However, two studies suggest that once RIRD has been implemented with high levels

of stereotypy. However, two studies suggest that once RIRD has been implemented with high levels of integrity (i.e., correctly and for each instance during the times/situations in which stereotypy is being treated) that not every instances of stereotypy needs to be redirected for a treatment effect to be maintained. Also, Sivaraman and Rapp (2019) examined the subsequent effects of RIRD when the treatment was no longer in place and found that longer exposure to the procedure, 20 min versus 5

treatment was no longer in place and found that longer exposure to the procedure, 20 min versus 5 min, was associated decreased stereotypy persisting for a short period of time.

Response Latency  Definition Response latency is the duration of time between the delivery of a stimulus and the response.
 Restricted and Repetitive Behaviors and Sleep Disturbances in ASD  Definition Sleep problems may contribute to, and be exacerbated by, specific behavioral challenges in individuals with ASD, including restricted and repetitive behaviors.

Historical Background Sleep problems are common in childhood and throughout the lifespan. Approximately 20–30% of typically developing children experience sleep difficulties, with the most common problems including difficulty falling asleep and staying asleep. Among adolescents and adults, sleep problems are more often labeled as insomnia. Population-based studies of adults conducted around the world suggest that approximately 30% of adults experience one or more symptoms of insomnia. Sleep

world suggest that approximately 30% of adults experience one or more symptoms of insomnia. Sleep problems occur even more frequently in children and adults with neurodevelopmental and psychiatric comorbidities. Most of the research on sleep disturbance in Autism Spectrum Disorder (ASD) has been conducted on child and adolescent populations. Children with ASD are more likely to have sleep problems than are children in the general population, with prevalence estimates ranging from 50–80%.

than are children in the general population, with prevalence estimates ranging from 50–80%. Parents of children with ASD are more likely to report that their child resists going to bed, has problems falling asleep, has restless sleep, experiences nighttime or early morning awakenings, and sleeps less overall. Children with ASD also have higher rates of parasomnias, such as night terrors or talking and walking during sleep. Sleep problems present significant and unique challenges for children

and walking during sleep. Sleep problems present significant and unique challenges for children with ASD and their families. As sleep is critical for normal brain development, sleep problems can reduce a child’s ability to learn. They may also increase rates of challenging and repetitive behavior, making it more difficult for a child to cooperate with daily routines, participate in the community, and interact with others. The behavioral cascade of sleep disturbance may have long-term detrimental

interact with others. The behavioral cascade of sleep disturbance may have long-term detrimental effects on a child’s ultimate level of functioning and ability to develop relationships. Sleep problems in children with ASD also contribute to maternal stress and maternal mental health.

Current Knowledge Causes of sleep abnormalities within ASD are assumed to be multifactorial, encompassing many possible biological, medical, psychological, and behavioral mechanisms. Biological correlates may include disruption in the sleep-wake cycle (circadian rhythms) and in melatonin production and regulation. Medical contributors to sleep disturbance may include epilepsy, gastrointestinal distress, and pharmacological side-effects. Over the last two decades, investigators have examined a

and pharmacological side-effects. Over the last two decades, investigators have examined a wide variety of developmental, emotional, and behavioral correlates of sleep disturbance. Areas of interest have included the association of sleep disturbance to age, intellectual, language, and adaptive skills, psychiatric comorbidities, overall intensity of core features of ASD, and specific symptoms within ASD. Initial research on sleep problems in ASD used subjective measures, such as parent or

within ASD. Initial research on sleep problems in ASD used subjective measures, such as parent or self-report questionnaires and sleep diaries. Commonly used assessment tools have included: The Children’s Sleep Habits Questionnaire (CSHQ), the Family Inventory of Sleep Habits (FISH), and the Behavioral Evaluation of Disorders of Sleep (BEDS). Increasingly, investigators have paired parent- and self-reports with direct measures of sleep, including actigraphy, polysomnography, and other systems

with direct measures of sleep, including actigraphy, polysomnography, and other systems of recording sleep behaviors and physiologic activity. Studies using objective measures have largely confirmed parent’s report of delayed sleep onset, fragmented sleep, reduced sleep efficiency, and decreased sleep length.

Cross-sectional and longitudinal designs have been used to better understand the onset and developmental course of sleep problems in ASD. As compared to their typically developing peers, children with ASD have shown sleep disturbance as young as 30 months of age, by parent-report. Longitudinal research has shown that sleep problems typically persist from childhood into adolescence and an emerging body of literature demonstrates that sleep problems may last into adulthood. Results of

an emerging body of literature demonstrates that sleep problems may last into adulthood. Results of self-report, sleep diaries, and actigraphy suggested that cognitively able adults with ASD take longer to fall asleep, have reduced sleep efficiency, and feel less refreshed after sleep than well-matched controls. It is established that individuals with intellectual disability experience more sleep problems than their typically developing peers; however, the association among sleep, IQ, adaptive

problems than their typically developing peers; however, the association among sleep, IQ, adaptive skills, and language function in children with ASD appears complex and is not yet well understood. In one review, approximately 40% of studies found associations between IQ and sleep and 60% did not. Similarly, findings for language and adaptive skills have been mixed.

Severity of core ASD symptoms, including problems with social communication and the presence of restricted and repetitive behaviors, is clearly and significantly associated with sleep disturbance. Parent ratings of children with more severe total ASD symptoms indicated more sensitivity to nighttime sleeping environments, more frequent awakenings, and more overall sleep disturbance. In a seminal review of the correlates of sleep disturbance in ASD, Hollway and Aman (2011) postulated a

seminal review of the correlates of sleep disturbance in ASD, Hollway and Aman (2011) postulated a bidirectional theoretical framework in which core symptoms of ASD represented vulnerability factors that increased children’s risk of insomnia when presented with environmental stressors. Features of ASD increased the possibility for maladaptive coping mechanisms, such as internalizing and externalizing behavioral problems, and decreased sleep. Specifically, as ASD symptoms increased across social

behavioral problems, and decreased sleep. Specifically, as ASD symptoms increased across social communication and behavior domains, children were theorized to have higher likelihood of an anxiety-related response to stressors. Because reduced sleep has been shown to disrupt daytime behavior, the model maintained a bidirectional component. Within diagnostic features of ASD, higher rates of social impairment have been associated with poor sleep quality and shorter sleep duration among children and

have been associated with poor sleep quality and shorter sleep duration among children and adolescents. The association of sleep disturbance to specific problems in developing interpersonal peer relationships has been observed across studies. Peer relationships provide an important context for development for all children. As developing and maintaining social relationships is an area of increased vulnerability for children with ASD, interventions that improve sleep may have downstream effects on

for children with ASD, interventions that improve sleep may have downstream effects on social outcomes. For example, children who are less irritable, or sleepy, will be able to make gains in therapy related to social interactions and to interact more positively with others.

Though restricted, repetitive behaviors (RRB) also represent a core symptom domain within ASD, a growing body of literature has demonstrated that challenges associated with RRB may contribute to sleep disturbance over and above general ASD severity. Poor sleepers with ASD have shown higher rates of stereotypy and screaming during the night, repetitive sensory motor behaviors, compulsive and ritualistic behavior, and aggressive behavior. Sensory over-responsivity has also been correlated with

behavior, and aggressive behavior. Sensory over-responsivity has also been correlated with multiple sleep problems. Sensory problems at bedtime may manifest as hyperarousal and excessive or negative responses to aspects of the nighttime sleeping environment.

Best practices for treating sleep disturbance in children with ASD often begin by addressing the behavioral aspects of sleep. Behavioral interventions have been identified as a first-line approach in treating sleep problems. Studies encompassing parent training though a variety of formats including handbooks, group education, and in-person and telephone-based individual sessions have all been successful at reducing time to fall asleep and increasing total length of sleep. Training content has

at reducing time to fall asleep and increasing total length of sleep. Training content has largely included principles of sleep hygiene, such as consideration of a calm and comfortable sleeping environment, provision of ample light in daytime – particularly in the early morning upon awakening, avoiding naps, reducing caffeine, and a consistent bedtime routine that is carefully planned to move more stimulating activities to earlier in the evening and calming activities closer to bedtime. Bedtime

stimulating activities to earlier in the evening and calming activities closer to bedtime. Bedtime passes that are paired with rewards for remaining in bed have been useful with older children. Detailed information on behavioral treatment of sleep in ASD is provided in additional references. Medications are commonly used to improve sleep. Melatonin is the most studied and utilized choice for children with ASD. Multiple studies have documented an association between higher rates of repetitive

with ASD. Multiple studies have documented an association between higher rates of repetitive behaviors and the use of medication for sleep.

Future Directions As many individuals are diagnosed with ASD, it is increasingly important for medical and behavioral health providers to be aware of the high rates of sleep difficulties in children, adolescents, and adults with ASD, to assess for these problems, and to be facile with evidence based medical and behavioral interventions. As interventions for sleep are applied within homes and families, it is important to consider family-based, collaborative, and culturally sensitive approaches

it is important to consider family-based, collaborative, and culturally sensitive approaches to treatment. Encouraging family-driven goals and allowing for flexibility within standardized protocols may improve treatment adherence and results. While most research has centered on care provided to families in academic health centers, behavioral sleep education provided to parents by therapists in community settings is showing promise. Other approaches include the use of telehealth or mobile phone

settings is showing promise. Other approaches include the use of telehealth or mobile phone apps. Future longitudinal research may seek to better understand the bidirectional association of sleep problems to development, health, and general well-being. Further intervention studies are needed to clarify the types of behavioral treatment that most effectively address specific sleep problems at different ages and developmental and language levels. Similarly, it should be recognized that individuals

ages and developmental and language levels. Similarly, it should be recognized that individuals with ASD will have varying behavioral needs.

Restricted Interest  Definition A limited set or limited number of interests and/or activities. Restricted and repetitive patterns of behaviors comprise one of the diagnostic criteria for autism spectrum disorders. The restricted interests may be simple motor stereotypies (i.e., lining up objects), echolalia (i.e., repetition of words or phrases), insistence on sameness (i.e., non-varied food or clothes), inflexible adherence to routines (i.e., same routes or schedules), highly restricted

or clothes), inflexible adherence to routines (i.e., same routes or schedules), highly restricted fixated interests (i.e., a narrow or limited range of items that hold the individual’s interest), and hyper- or hypo-activity to sensory input (i.e., such as sounds, textures, lights, smell). Restrictive and repetitive behaviors (RRBs) in ASD can range from extreme and obvious to subtle and infrequent. Restricted interests can be seen in children as young as 17–37 months old. They are pervasive and

Restricted interests can be seen in children as young as 17–37 months old. They are pervasive and can be associated with persistent interference with the social, communicative, and adaptive functioning in individuals with ASD. The interference with or interruption of the restricted interests can evoke challenging behaviors (i.e., outbursts, tantrums, severe anxiety, etc.) and can often cause significant challenges for the individual with ASD and his/her family. Notwithstanding, by using the

significant challenges for the individual with ASD and his/her family. Notwithstanding, by using the individual’s interest to improve task performance, RRBs can be used as intrinsic reinforcement and motivating rewards. High levels of restricted interests were found to be associated with less severe symptoms of depression in individuals with ASD, suggesting that restricted interests may be an alleviating factor against the development of depression in ASD. Furthermore, routines have been found

factor against the development of depression in ASD. Furthermore, routines have been found to present an individual with ASD a sense of stability, predictability, and consistency, which can minimize their risk for adjustment problems. Assessment of restricted behaviors: the Repetitive and Restricted Behavior Scale (RBS) and the Repetitive and Restricted Behavior Scale-Revised (RBS-R) are scales specifically designed for the assessment of RRBs. The Autism Diagnostic Observation Schedule (ADOS)

specifically designed for the assessment of RRBs. The Autism Diagnostic Observation Schedule (ADOS) enables observation of RRBs during the variety of structured and play-based activities. The Autism Diagnostic Interview-Revised (ADI-R) is used to gather information through parent interview and includes 13 questions that are grouped in the “interests and behaviors” category.

Retrieval of Information  Definition The process by which memories of events or information are recalled is known as retrieval of information. Retrieval of information is one of three processes involved in long-term memory; the other two processes are encoding and storage. Two kinds of information may be stored in the brain: episodic and semantic. Episodic memories are memories of personal events, whereas semantic memories contain general knowledge that a person has learned about the world.

whereas semantic memories contain general knowledge that a person has learned about the world. Together, episodic and semantic memories are known as explicit (or conscious) memories. The brain also stores unconscious memories (sometimes called implicit memories). These memories allow humans to perform tasks without having to think about how to do them (e.g., writing, bicycling). Explicit memories may be retrieved via recognition or recall. Recognition occurs when a present experience is

may be retrieved via recognition or recall. Recognition occurs when a present experience is automatically associated with a stored memory. For example, answering a multiple-choice question on a test may involve recognition. Recall involves re-accessing a memory that has not been directly triggered by a present experience. Responding to a short answer question on a test is an example of a task that requires recall. Some individuals with autism appear to have certain memory-related deficits. For

requires recall. Some individuals with autism appear to have certain memory-related deficits. For instance, impairments in working memory (the capacity to store information that the brain is actively processing) and short-term memory (the capacity to store information for a brief period of time) have been found. The pattern of deficits and strengths observed in individuals with autism may be similar to that of individuals with lesions in the frontal lobe of the brain. With regard to retrieval of

to that of individuals with lesions in the frontal lobe of the brain. With regard to retrieval of information, individuals with autism may have deficits that are specific to certain types of information. For instance, individuals with autism may have difficulty retrieving information from episodic (or personal experience) memory but not from semantic (or general information) memory. They may also show deficits in comparison to non-autistic individuals in recall of semantic information that contains

deficits in comparison to non-autistic individuals in recall of semantic information that contains contextual information (e.g., a sentence as opposed to a random string of words). It is important to note that the profile of strengths and deficits in the ability to retrieve stored information will vary across individuals with different levels of functioning and different comorbidities. Intellectual disabilities may have a significant effect on memory functioning. In assessing recall and recognition

may have a significant effect on memory functioning. In assessing recall and recognition in individuals with autism, researchers and clinicians must take note of the type of information involved (e.g., social vs. nonsocial material), as performance may differ based on the content of the information to be recalled. Retrieval of information may also be dependent on the context of learning or of assessment, with variation across individuals on the ideal context for obtaining optimal performance in

with variation across individuals on the ideal context for obtaining optimal performance in each area of memory.

Rett Syndrome  Short Description or Definition Rett syndrome is a progressive X-linked dominant neurodevelopmental disorder which affects females almost exclusively. Rett syndrome displays a characteristic pattern of cognitive and functional stagnation and subsequent deterioration. Postnatal brain growth and neuronal development are highly impacted, and Rett syndrome represents one of the most common causes of mental retardation in females second only to Down syndrome. Stereotypic hand

most common causes of mental retardation in females second only to Down syndrome. Stereotypic hand movements, typically at midline, are one of the most prominent symptoms. Other characteristics of this disorder include a loss of spoken language and loss of or impaired ambulation (abducted gait). Seizure activity and scoliosis or kyphosis are common comorbid disorders. Throughout the world teams of scientists have worked to gain a better understanding of Rett syndrome, attempting to identify the

scientists have worked to gain a better understanding of Rett syndrome, attempting to identify the cause and pathophysiology of the disorder. A major breakthrough occurred in 1999 when Dr. Amir, a scientist at Baylor University (Huston, TX), discovered that Rett syndrome is caused by a mutation of the methyl-CpG-binding protein 2 (MECP2) gene. Rather than an inherited disorder that is passed on from one generation to the next, Rett syndrome is typically caused by a sporadic mutation of the

on from one generation to the next, Rett syndrome is typically caused by a sporadic mutation of the MECP2 gene. In most cases, the damaged copy of MECP2 can be traced to the paternal allele. The incidence of recurrence in a family is less than 1%. There are a number of atypical forms of Rett syndrome including individuals with developmental delays prior to regression or who lack the initial period of normal development (congenital variant) or who display an early psychomotor delay but without

of normal development (congenital variant) or who display an early psychomotor delay but without regression until school age (delayed onset variant), a group whose supportive characteristics do not appear until late childhood (atypical or “forme fruste”), those with a family recurrence (familial variant), and those who have retained some speech (“preserved speech variant”). While Rett syndrome remains a clinical diagnosis, the link with MECP2 has made DNA testing and confirmation possible for

remains a clinical diagnosis, the link with MECP2 has made DNA testing and confirmation possible for affected individuals and their families. To date, approximately 95% of girls exhibiting Rett symptoms have one of the over 200 currently identified MECP2 mutations. Rett syndrome is the first human disease found to be caused by defects in a protein involved in the regulation of gene expression through its interaction with methylated DNA. As such, Rett syndrome could hold the key to our

through its interaction with methylated DNA. As such, Rett syndrome could hold the key to our understanding of a number of human disorders ranging from some forms of learning disability to autism.

Categorization The diagnostic criteria for Rett syndrome initially developed in the mid-1980s and revised in 2002 and have been recently revised once again. The fourth edition (revised) of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) has included Rett syndrome (termed Rett’s disorder) as a subcategory of pervasive developmental disorder. The DSM-IV-TR diagnostic criteria for 299.80 Rett’s disorder generally coincide with those initially proposed. The DSM-IV-TR

criteria for 299.80 Rett’s disorder generally coincide with those initially proposed. The DSM-IV-TR criteria, however, differ in some significant ways from the most recent revision of the diagnostic criteria developed by members of the Rett Search Clinical Research Consortium, an international panel of experts convened by the International Rett Syndrome Association (2010). For example, the DSM-IV-TR indicates “apparently normal psychomotor development through the first 5 months after birth,”

indicates “apparently normal psychomotor development through the first 5 months after birth,” whereas Neul and his associates (2010) suggest that “mild generalized hypotonia and other previously reported subtle developmental alterations during the first 6 months of life are common in Rett syndrome.” Deceleration of head growth between 5 and 48 months of age is a necessary criterion within the DSM-IV-TR. The revised IRSA diagnostic criteria, on the other hand, have removed deceleration of head

The revised IRSA diagnostic criteria, on the other hand, have removed deceleration of head growth as a criterion. The members of the consortium simply indicate as a note that physicians should consider Rett syndrome as a diagnosis when postnatal deceleration of head growth is observed. They did so as an increasing number of individuals with Rett syndrome have a normal head size. The DSM-IV-R requires a loss of social engagement early in the course of the disorder (that may subside to some

requires a loss of social engagement early in the course of the disorder (that may subside to some degree later). No such requirement is found in the new IRSA criteria. The new IRSA criteria also provide diagnostic criteria for atypical or variant forms of Rett syndrome, while no such criteria are considered in the DSM-IV-R. Individuals must display at least 2 of the 4 main criteria for classical Rett syndrome and 5 of the 11 supportive criteria to qualify for the atypical diagnosis (see Table

Rett syndrome and 5 of the 11 supportive criteria to qualify for the atypical diagnosis (see Table 1). The supportive criteria provided by the IRSA criteria are not required for a diagnosis of typical or classic Rett syndrome. The DSM-IV-TR includes EEG abnormalities, seizures, nonspecific brain imaging abnormalities, and severe or profound mental retardation (Axis II) as associated features and disorders. Thus, the two sources differ in regard to associated and supportive features of the

and disorders. Thus, the two sources differ in regard to associated and supportive features of the disorder. Moreover, the current DSM-IV-TR criteria fail to indicate exclusionary criteria that are critical for differential diagnosis.

Epidemiology Persons with Rett syndrome have been reported to exist in most countries of the world. Thus, Rett syndrome does not seem to be a particularly rare disorder, and it is more or less universal. The prevalence of the Rett syndrome has been studied, based upon the Swedish registry for mental retardation and surveys of neuropediatricians, in a part of southwestern Sweden. The prevalence was about 1 per 15,000 live female births. In their study of 5,400 consecutive referrals to the

was about 1 per 15,000 live female births. In their study of 5,400 consecutive referrals to the pediatric neurology center in western Scotland, 19 cases of Rett syndrome were identified. The resulting prevalence rate was very similar to that reported by Hagberg (1985), 1 per 12–13,000 females. A prevalence study was conducted within the United States by a number of researchers at the Baylor College of Medicine. The study employed the Texas Rett Syndrome Registry and explored females aged 2–18

of Medicine. The study employed the Texas Rett Syndrome Registry and explored females aged 2–18 years, and was the first with a large ethnic mix that would allow an exploration of racial/ethnic group-specific prevalence of Rett syndrome. A prevalence estimate of approximately 1 per 22,800 live female births was reported with no significant differences in prevalence estimates by race/ethnicity (African American, Caucasian, and Hispanic). This estimate is lower than that reported in earlier studies,

American, Caucasian, and Hispanic). This estimate is lower than that reported in earlier studies, suggesting the prevalence of Rett syndrome has perhaps been overestimated.

Natural History, Prognostic Factors, Outcomes During normal human development, a large number of genes are expressed in a tissue-specific manner. That is, the gene must only function in the creation of specific cells. Many of these genes are needed during critical periods of central nervous system (CNS) development, and then their expression must be turned off. Other genes are required only after birth, and turning these genes on and off at appropriate times are critical for normal and proper

birth, and turning these genes on and off at appropriate times are critical for normal and proper development. The MeCP2 gene encodes the development of the transcriptional silencing methyl-CpG-binding protein 2. This protein plays an important role in the “silencing” of various genes during CNS development. The mutations in the MecP2 gene in Rett syndrome result in a failure to produce the MecP2 protein. Thus, the genes that MeCP2 would normally silence continue to engage in ongoing

the MecP2 protein. Thus, the genes that MeCP2 would normally silence continue to engage in ongoing transcription. The number and nature of the genes for which MeCP2 is meant to suppress throughout the genome is as yet unknown, although there is reason to believe these genes regulate the development and mature function of the brain and central nervous system. Numerous different mutations of the MeCP2 gene have been identified in individuals with Rett syndrome. Some researchers suggest that the

MeCP2 gene have been identified in individuals with Rett syndrome. Some researchers suggest that the specific type of mutation in the MECP2 gene affects the type and severity of symptoms of Rett syndrome. Studies are now underway to understand each mutation that may cause the features of Rett syndrome, and how these mutations might change the features of the syndrome. Investigators are trying to find other genetic switches that operate in a similar way to the MeCP2 protein. Once they discover how

other genetic switches that operate in a similar way to the MeCP2 protein. Once they discover how the protein works and locate similar switches, they may devise therapies that can substitute for the malfunctioning switch. Another outcome might involve manipulating other biochemical pathways to compensate for the malfunctioning MECP2 gene, thereby preventing progression of the disorder. Gene therapy to achieve regulated expression of a normal MECP2 gene is also under study in animal models.

Neuropathological studies have been conducted in Rett syndrome that may assist in gaining a better understanding of how ineffective MeCP2 activity produces Rett syndrome. While individuals with Rett syndrome are typically small for their age, only the brain weighs less than expected for the height and weight of the individual. This supports the view that the MeCP2 gene appears to have its greatest impact on “downstream” genes that code for the development and mature function of brain tissue.

impact on “downstream” genes that code for the development and mature function of brain tissue. Accumulated autopsy studies suggest that the brain of the individual with Rett syndrome weighs significantly less than that of controls matched for both age and height. The decrease in brain size and weight appears to begin after birth (in most cases), starting at 3–4 months of age. Brain size and weight appear to stabilize in later childhood and the absence of markers for significant degenerative

appear to stabilize in later childhood and the absence of markers for significant degenerative disorder supports the idea that the decreased brain size is the result of arrested brain development. The concentrations of two major brain gangliosides, GD1a in frontal gray matter and GD1b in temporal gray matter, appear to be lowered selectively in the cerebral cortex and cerebellum in girls with Rett syndrome. The ganglioside GD1a is thought to play an important role in synaptogenesis since it is

syndrome. The ganglioside GD1a is thought to play an important role in synaptogenesis since it is prominent in synaptic membranes, and high concentrations are reported during the time when nerve ending growth and synapse formation are most intense (25th fetal week until age 2 years). Ganglioside GD1b is rich in axons and accrues more slowly, reaching maximum concentration at age 20 years. The reduction in GD1a would help explain the pathogenic findings of decreased dendritic arborization.

reduction in GD1a would help explain the pathogenic findings of decreased dendritic arborization. Synapses within the cerebral cortex, basal ganglia and brainstem responsible for movement and breathing employ the use of the excitatory amino acid neurotransmitter glutamate. Glutamate-mediated neurotransmission appears to be disrupted in persons with Rett syndrome.

Clinical Expression and Pathophysiology Individuals with classical Rett syndrome exhibit a characteristic course of development. Prenatal and perinatal histories of these persons are generally unremarkable. While minor pre- and perinatal problems (e.g., mild hypotonia, tremulous neck movements, a low intensity of interpersonal contact, and abnormal hand use and language development) can be identified retrospectively in as many as 80% of the girls, it is unlikely that these mild symptoms would

retrospectively in as many as 80% of the girls, it is unlikely that these mild symptoms would be detected as relevant even with detailed neurologic or developmental assessment. This apparently normal period of development is followed by a slowing or cessation of the acquisition of developmental milestones. Hagberg and Witt-Engerstrom (1986) proposed a staging system to facilitate the characterization of the disorder patterns and profiles from infancy through adolescence. Their system suggests

of the disorder patterns and profiles from infancy through adolescence. Their system suggests four clinical stages and was derived from a synthesis of clinical observations over the years in 50 Swedish cases of Rett syndrome. The purpose of the staging system is to provide average guidelines for stage patterns thought to be of use when confronted with the diagnostic problems resulting from the complex symptomatology and longitudinal profile of the condition. The four stages include early onset

symptomatology and longitudinal profile of the condition. The four stages include early onset stagnation phase, rapid destructive stage, pseudostationary stage, and late motor degeneration stage. This staging system has gained general acceptance; however, the names assigned to each stage have been criticized, and the stages are commonly referred to simply by number.

The symptoms and features of each of the four stages are as follows: *   Stage 1 (onset 6–18 months) The clinical profile at this stage suggests a deterioration or at least a general slowing down (stagnation) of motor development. Hypotonia is typically noted. Deviation from normal development is often compensated for or hidden, in part, by the rapid developmental speed of infancy. Thus, additional gross motor abilities often are learned during this stage, even as others are lost, but are

gross motor abilities often are learned during this stage, even as others are lost, but are delayed in their appearance. The symptoms of stage 1 are nonspecific and are not predictive of subsequent deterioration.

*   Stage 2 (onset 1–3 years) During this stage the syndrome becomes significantly more pronounced as the children lose previously acquired abilities. In most individuals, a relatively well-demarcated period of rapidly declining social interaction, stagnation or loss of acquired cognitive abilities, and loss of purposeful hand use and speech is evident. Stereotyped movements become a prominent symptom. The intellectual functioning of the girl with Rett syndrome during this stage is generally

symptom. The intellectual functioning of the girl with Rett syndrome during this stage is generally reported to fall within the severe to profound range of mental retardation. Ataxic/apraxic gait abnormalities are observed in ambulatory girls. Also, during the time the child is awake, she may display aberrant breathing patterns. Hyperventilation and respiratory pauses (generally lasting 30–40 s) are most common. Seizure activity is present in approximately one-fourth of the girls during this

are most common. Seizure activity is present in approximately one-fourth of the girls during this stage. Sleep abnormalities including delayed sleep onset and increased night awakenings are manifested by more than three-fourths of the girls.

*   Stage 3 (onset 2–10 years) Persons with Rett syndrome generally demonstrate diminishing autistic symptomatology and improved social interaction during this period. They appear to be more aware of their surroundings and seem to make attempts at using residual functional skills. Communication skills are reported to improve with better interaction. Some girls employ eye pointing, babbling, or even word pieces to signal communicative intent. Seizures occur in up to 80% of the girls with Rett

even word pieces to signal communicative intent. Seizures occur in up to 80% of the girls with Rett syndrome. Spasticity or rigidity and scoliosis tend to progress, and “jerky,” truncal ataxia and apraxia become prominent.

*   Stage 4 (onset 10+ years) Progressive muscle wasting, scoliosis, spasticity, and rigidity frequently are displayed during this late stage. Decreasing mobility and a number of late stage second neuron abnormalities (e.g., drop foot abnormalities, remarkably plantar-flexed feet) may require the use of a wheelchair. Spinal cord dysfunction appears to act in conjunction with extrapyramidal features to lessen mobility. Interestingly, this stage is marked by increased motor deterioration only. The

to lessen mobility. Interestingly, this stage is marked by increased motor deterioration only. The individuals’ cognitive functioning remains stable, while social interaction (eye contact) and attentiveness improve. Seizure activity often becomes less problematic, allowing for a decrease in the anticonvulsant regimen for some girls. Although persons over the age of 25 have been identified, the oldest being 76 years of age, little systematic research has been conducted with this group to provide

being 76 years of age, little systematic research has been conducted with this group to provide information on the course of the disorder past adolescence. There is some evidence to suggest that the life expectancy of persons with Rett syndrome may be diminished; however, precise information is not available at this time.

Evaluation and Differential Diagnosis The presentation of Rett syndrome differs considerably depending upon the stage and age of observation. For example, a child of 4 or 5 years of age with classical Rett syndrome can be correctly diagnosed with relative ease. Due to vague symptomology, diagnosis during infancy is frequently misinterpreted. Likewise, the late stage in adolescence displays a common, complex, picture of severe multiple disabilities with secondary contractures resembling any

common, complex, picture of severe multiple disabilities with secondary contractures resembling any number of disorders and, therefore, often is misdiagnosed. The entire disease process must be recognized and considered to fully understand this condition. The most common nonspecific diagnosis for children with Rett syndrome above age one is reported to be the early infantile autism. The behavioral patterns, progression, and prognosis of these two conditions, nevertheless, differ significantly. A

patterns, progression, and prognosis of these two conditions, nevertheless, differ significantly. A basic distinction between the two disorders can be made on the basis of motor behavioral analysis. “Whereas autism represents a regression of verbal but not motor skills, Rett syndrome involves the simultaneous regression of both skills.” Stereotypic behavior associated with infantile autism is generally more complex and, unlike that in Rett syndrome, often involves the manipulation of an object

more complex and, unlike that in Rett syndrome, often involves the manipulation of an object with preservation of the pincer grasp. Persons with Rett syndrome demonstrate a very restricted repertoire of movements that appear monotonous in both form and speed.

Millichap (1987) has suggested that Rett syndrome might represent a variant of childhood disintegrative disorder (Heller’s syndrome). Children with childhood disintegrative disorder develop their symptoms later (e.g., at least age 2 and typically age 3 or 4 years) than individuals with Rett syndrome, and normal neurological findings are reported in persons with the former disease. Stage 2 developmental regressions often suggest neurodegenerative diseases. For example, the earliest stages of

regressions often suggest neurodegenerative diseases. For example, the earliest stages of Rett syndrome are difficult to distinguish from infantile neuronal ceroid lipofuscinosis (INCL), an autosomal recessive disease especially frequent in the Finnish population. Both disorders cause a rapid regression of psychomotor development and the manifestation of hand and finger stereotypies at approximately the same age. As INCL progresses, however, myoclonus and retinal degeneration becomes apparent and

the same age. As INCL progresses, however, myoclonus and retinal degeneration becomes apparent and differentiates the two disorders. Failure to designate retinopathy or optic atrophy as exclusionary criteria for Rett’s disorder within the DSM-IV-TR may complicate the differential diagnosis of this disorder. A report by Philippart (1993) links Rett syndrome with tuberous sclerosis, a neurocutaneous disorder. While this disorder may show initial similarities to Rett syndrome, close examination of

disorder. While this disorder may show initial similarities to Rett syndrome, close examination of the skin with a Wood’s lamp and the presence of serial computed tomography abnormalities will distinguish this disorder. Chromosomal disorders, such as Angelman syndrome (“happy puppet syndrome”) can display similar features to Rett syndrome. Children with Angelman syndrome, however, fail to display a period of normal development and subsequent rapid regression. Acute and chronic encephalitis may

a period of normal development and subsequent rapid regression. Acute and chronic encephalitis may be distinguished by examination of the cerebrospinal fluid (CSF) and by a characteristic electroencephalography. The loss of language and the development of seizures in preschool-aged children are similar in both Rett syndrome and the Landau-Kleffner syndrome. Head circumference growth and motor skills are preserved in the Landau-Kleffner syndrome. In summary, the clinical identification of Rett

are preserved in the Landau-Kleffner syndrome. In summary, the clinical identification of Rett syndrome rests on the careful exploration of clinical manifestations and the specific pattern of symptom progression. The differential diagnosis based upon clinical observation, while frequently difficult at presentation (especially during the earliest stages), becomes much easier after follow-up over several months to a few years. A diagnosis of Rett syndrome should involve a molecular genetic analysis

months to a few years. A diagnosis of Rett syndrome should involve a molecular genetic analysis to identify mutations in the MECP2 gene.

Treatment To date, there is no cure for the Rett syndrome, and therapeutic interventions directed at the fun- damental mechanisms underlying Rett syndrome have failed to demonstrate any lasting or substantive improvements. At this time, we must be satisfied to provide suitable intervention aimed at symptomatic relief. Seizure activity is reported in approximately 80% or persons with Rett syndrome. Selection of a specific medication should be based upon clinical seizure type and EEG pattern.

Selection of a specific medication should be based upon clinical seizure type and EEG pattern. Several clinicians agree that standard dosages of Tegretol (C-carbamazepine) constitute the best seizure management program. Communication abilities and subsequent programming for persons with Rett syndrome have been the topic of very limited empirical research. Prior to regression, most of the girls with this disorder are reported to have developed single spoken words and/or word combinations.

with this disorder are reported to have developed single spoken words and/or word combinations. Comprehension skills appropriate to the child’s age also are typically noted. The loss of language skills during regression is sufficiently rapid to be mistaken for hearing loss. Following the regression phase of the disorder, speech and language skills are observed to be severely impaired. Verbalizations are typically nonexistent or limited to “nonfunctional” consonant-vowel combinations, except in

are typically nonexistent or limited to “nonfunctional” consonant-vowel combinations, except in the estimated 2–4% of girls who fall within the preserved speech variant of Rett syndrome. Formal testing suggests that girls with Rett syndrome function at a pre-symbolic language level. Vocalizations, facial expressions, gestures, walking toward a desired item or activity, and eye gaze are common communicative behaviors displayed by persons with Rett syndrome.

Persons with Rett syndrome exhibit multiple orthopedic and motor movement disorders. The exact nature of these disorders can vary significantly across the different phases of the syndrome. Intensive therapy, while failing to alter the actual course of the disease, has been successful in addressing symptoms by maintaining or improving functional movement, mobility, preventing deformities, and keeping the girls in contingent contact with their environments. Therapeutic intervention is especially

the girls in contingent contact with their environments. Therapeutic intervention is especially important, and should be more frequent, during the periods of regression associated with the disorder as transition skills are at risk. Apraxia and Ataxia are frequently the earliest manifestations of motor problems in Rett syndrome. A number of therapeutic interventions have been found to be successful in the treatment of apraxia-ataxia. Tone reduction techniques similar to those used with patients

in the treatment of apraxia-ataxia. Tone reduction techniques similar to those used with patients afflicted with cerebral palsy or impaired through a stroke are appropriate. Interventions might include (1) use of the therapy ball, (2) balance stimulating floor activities, (3) segmental rolling, and (4) rotation and weight shift activities. Stereotyped hand movements represent one of the most distinguishing characteristics of the Rett syndrome. Hand-wringing, hand-washing, hand tapping, and

distinguishing characteristics of the Rett syndrome. Hand-wringing, hand-washing, hand tapping, and hand-to-mouth movements are common stereotypies resulting in the loss of purposeful hand function. Most researchers consider the stereotypic hand movements to represent primary circular reactions resulting from an underlying extrapyramidal disorder. Thus, they represent nonvolitional movements. Persons with Rett syndrome appear to require a great deal of concentration and effort to “break out” of

with Rett syndrome appear to require a great deal of concentration and effort to “break out” of the stereotypic movements even for brief attempts at purposeful hand use. The suspected neurophysiological etiology of stereotypy in Rett syndrome has led researchers to caution practitioners attempting to modify these behaviors. As these behaviors appear to represent basically involuntary movements, attempts to change this behavior, especially through the use of aversive consequences, appear ill

attempts to change this behavior, especially through the use of aversive consequences, appear ill advised. Splinting has been found to be successful in interrupting hand-to-mouth and hand-wringing movements, thus allowing the girls to direct their attention to tasks and persons in their environment and to reduce the risk of skin breakdown related to these high-rate behaviors.

Ambulation remains one of the critical skills to develop and maintain in persons with Rett syndrome. Many of the girls fail to develop this skill prior to stage II, while others lose this ability as part of the rapid motor degeneration. As spasticity and apraxia increase, the girls often lose many of their functional gross motor skills they had previously achieved. Additionally, these girls often manifest spatial disorientation. Their perception of an upright posture results in a forward,

often manifest spatial disorientation. Their perception of an upright posture results in a forward, backward, or lateral leaning. Ambulation may be lost, especially for girls with a backward lean orientation, as they are unable to initiate their forward weight shift. They fear falling when attempting weight shift in a forward direction. The abnormal gait pattern typically displayed in this syndrome results from a combination of spasticity, ataxia, apraxia, compensatory spinal rigidity, and

results from a combination of spasticity, ataxia, apraxia, compensatory spinal rigidity, and spatial disorientation. Asymmetries may develop as one leg becomes stiffer or weaker. Weight shift is accomplished through lateral rocking, and trunk rotation is lost. More simply, because the center of balance is off, girls often think they are falling forward when they are standing normally. They try to compensate by leaning back, fall over, and over time may loose the ability to stand. Independent

to compensate by leaning back, fall over, and over time may loose the ability to stand. Independent standing and ambulation represent a realistic therapy goal, especially in the early years. Many girls while unable to walk independently can do so with assistance. Such aided ambulation should be encouraged. Weight-bearing exercises, walking, and gait training have been successful. If appropriate, activities designed to elicit righting and equilibrium responses might include use of the large

activities designed to elicit righting and equilibrium responses might include use of the large therapy ball (prone positioning and then standing, leaning forward), weight shifting (seating the child on bench and then tipping the bench slightly backward), and ultimately active shift forward to come from sitting to standing. Scoliosis (a side-to-side curvature of the spine) in individuals with Rett syndrome is well and kyphosis (“hunchback”) is not uncommon. Together, these deformities represent

syndrome is well and kyphosis (“hunchback”) is not uncommon. Together, these deformities represent the primary musculoskeletal concern in Rett syndrome. Unfortunately, there are no rigid guidelines to predict deformity or to recommend treatment. Standard criteria (e.g., sex of patient, curve pattern, onset of menarche, Risser sign) typically useful in the determination of an appropriate intervention strategy do not appear to be of use with this syndrome.

Reversal Learning  Definition Reversal learning refers to the ability to alter one’s response after encountering just a few examples of a change in consequences for a behavior. Typically, reversal learning is assessed after training on simple discrimination tasks in which an individual is presented with two (or more) stimuli (such as pictures or objects), and responses to one stimulus are reinforced (i.e., followed by praise, snack foods, or access to a toy) whereas responses to the other

(i.e., followed by praise, snack foods, or access to a toy) whereas responses to the other stimulus are not. Once a learning criterion is met, the stimulus functions are reversed such that responses to the originally positive stimulus are no longer reinforced and responses to the previously negative stimulus are reinforced. Reversals are often embedded in a variety of instructional tasks and are used as one measure of cognitive inflexibility in individuals diagnosed with a neurodevelopmental

used as one measure of cognitive inflexibility in individuals diagnosed with a neurodevelopmental disability. Discrimination reversal procedures are also widely used in examining the neural mechanisms of behavioral flexibility.

Historical Background There is a rich literature on the acquisition of discrimination reversals in humans from the 1950s through the 1970s, and much of this literature evolved in two different areas of psychology. In the developmental literature, researchers were interested in whether typically developing children showed developmental differences on different types of discrimination shift tasks. This work was paralleled by the work of other researchers who were interested in whether

tasks. This work was paralleled by the work of other researchers who were interested in whether individuals with intellectual disabilities would acquire learning set (presenting new discriminations until the participant learns each discrimination in one trial), and whether they would acquire a variety of discrimination shifts, with a particular interest in reversal shifts. Both of these literatures advanced different theories for discrimination shift behavior, and they have laid the foundation

advanced different theories for discrimination shift behavior, and they have laid the foundation for modern investigations of reversal acquisition by individuals with autism spectrum disorder (ASD). Below, these literatures will be briefly summarized.

Discrimination Shifts in Typically Developing Children and Adults Much of the work in typically developing populations has been reviewed, which points out that a major interest was to determine if there were developmental differences in discrimination-shift ability related to language acquisition. This area of research was heavily influenced by the work of Kendler and Kendler (1959) and their subsequent studies. There is mixed evidence for the idea that there are developmental differences

subsequent studies. There is mixed evidence for the idea that there are developmental differences regarding the ability to perform reversal shifts. Initially, groups of older children or adults were compared to groups of younger children on two types of transfer tasks: reversal and nonreversal. The original discrimination was between stimuli that differed along two dimensions, such as color and size, and the problem could be solved by responding on the basis of a dimensional cue (e.g., objects

and the problem could be solved by responding on the basis of a dimensional cue (e.g., objects of a particular color were always positive regardless of size). For participants given a reversal transfer task, the same dimension as in the original problem was still relevant, but the valences of the stimuli were reversed (e.g., the choices of the previously positive color were no longer reinforced and choices of the previously negative stimulus were). By contrast, for the nonreversal procedure,

and choices of the previously negative stimulus were). By contrast, for the nonreversal procedure, the relevant stimulus dimension changed (e.g., the positive stimulus was no longer defined by color, but by size). Some studies reported that older children and adults were more likely to acquire the reversal task quickly compared to the non-reversal, but other studies found no difference in the rate of acquiring the different shift tasks. Some studies investigated the role of verbal mediation on

of acquiring the different shift tasks. Some studies investigated the role of verbal mediation on shift tasks by instructing some participants to verbalize the basis of their response and comparing them to participants who were not instructed to verbalize. On balance, these studies did not support the role of verbal mediation: the performance of groups instructed to verbalize did not differ from those not given such instructions and sometimes children would verbalize the correct response but

those not given such instructions and sometimes children would verbalize the correct response but simultaneously respond to the incorrect stimulus. Finally, giving participants over-training on the original discrimination tended to facilitate acquisition of a reversal when visual stimuli were used but not when spatial stimuli were used. Moreover, it was found that a participant’s dimensional preference exerted a strong influence on the rate of acquisition of a reversal.

Discrimination Shifts in Individuals with Intellectual Disabilities (ID) The behavior of individuals with severe intellectual disability has long been described as rigid, perseverative, and inflexible and tests of discrimination reversals were thought to be an index of such rigidity. The reported studies tend to be group designs in which the comparison group was typically developing children matched on mental age equivalent or IQ or a group of individuals with ID also matched on mental age

matched on mental age equivalent or IQ or a group of individuals with ID also matched on mental age equivalent or IQ. In comparison to typically developing peers, individuals with ID were reported to show deficits on discrimination reversal tasks in some studies, but not in others. Zeaman and House reported a substantial amount of work on the discrimination abilities of individuals with ID. In these studies, acquisition of different types of discrimination-shift tasks were compared after

In these studies, acquisition of different types of discrimination-shift tasks were compared after learning an original discrimination to criterion. The individuals in these studies ranged in functioning level from moderate to profound disability, but specific diagnoses were rarely reported. Collectively, the results of this body of research indicated that these individuals were capable of acquiring discrimination reversal set (quicker acquisition of repeated reversal problems) of a spatial

discrimination reversal set (quicker acquisition of repeated reversal problems) of a spatial discrimination, that requiring differential responses to the two stimuli resulted in quicker acquisition of a reversal, and that prior training on a learning set task facilitated reversal acquisition. A novel finding from this literature, that contradicted the then-dominant learning theories of Hull and Spence, was the overtraining reversal effect – that providing overtraining on the original task

and Spence, was the overtraining reversal effect – that providing overtraining on the original task facilitated subsequent reversal learning.

Current Knowledge Relevance of Reversal Learning In recent years, there has been a renewed interest in discrimination reversal learning in intellectual disabilities in general, and in autism specifically, for several reasons. First, discrimination reversals are a type of set-shifting, or the ability to alter behavior as a result of changes in the environment or context in which the behavior occurs. (Other examples of discrimination set-shifting include intra- and extradimensional shits.)

occurs. (Other examples of discrimination set-shifting include intra- and extradimensional shits.) Set-shifting abilities in autism are of interest because they are part of a class of behaviors that are described as executive functioning abilities. Executive function is defined as a set of higher-order cognitive skills that require processing and integration of information from a range of both internal and external sources. Other examples of executive functioning include planning, working

internal and external sources. Other examples of executive functioning include planning, working memory, and inhibitory control. Some researchers have suggested that deficits in executive function may underlie the social and cognitive impairments frequently observed in individuals diagnosed with an ASD, but this does not appear to be a core deficit in the disorder. In addition, one of the three factors leading to an autism diagnosis is an excess of restricted, repetitive behaviors or interests,

leading to an autism diagnosis is an excess of restricted, repetitive behaviors or interests, which may reflect deficits in inhibitory control. Performance on discrimination reversal shifts can be used to index deficits in inhibitory control because individuals are required to withhold (or inhibit) responses to stimuli when there is a history of responding to those stimuli being reinforced. Cognitive inflexibility is measured as the number of perseverative errors (i.e., repeated errors prior to

inflexibility is measured as the number of perseverative errors (i.e., repeated errors prior to switching one’s selection) and regressive errors (i.e., a failure to maintain a switched response) during a reversal. Some researchers have suggested that an autism diagnosis may distinguishable from other diagnoses (such as attention-deficit hyperactivity disorder [ADHD] or Down syndrome) on the pattern on results across a variety of executive functioning tests, including set-shifting. Moreover, there

on results across a variety of executive functioning tests, including set-shifting. Moreover, there are reported positive correlations between set-shifting deficits and measures of repetitive and restricted interests.

Performance by individuals with autism and/or intellectual disabilities on discrimination reversals is also of interest because rapid reversal responding is a prerequisite behavior for conditional discrimination tasks such as matching-to-sample (MTS) and for other tasks that tap relational learning. Special education classrooms often use MTS procedures to teach students the relation between items (e.g., to teach the relation between a printed word and an object) as well as some communication

(e.g., to teach the relation between a printed word and an object) as well as some communication skills. In addition, MTS procedures are used in standardized assessments. In MTS, a stimulus, the sample, is presented and after an observing period, two or more additional stimuli, the comparisons, are presented. The individual is required to choose the comparison that goes with, or matches, the sample. Across teaching trials, the sample stimulus changes, but the same comparison options are

sample. Across teaching trials, the sample stimulus changes, but the same comparison options are presented. For example, on some trials, the sample may be the printed word CAT and on others it may be the printed word DOG, and the comparisons may be photographs of a cat and dog. Responses to the photo of the cat are reinforced when the printed word CAT is the sample, and responses to the photo of the dog are reinforced when the printed word DOG is the sample. In order to successfully solve this

the dog are reinforced when the printed word DOG is the sample. In order to successfully solve this task, an individual is required to make rapid reversals across trials presented in a teaching session – whether a response to a given comparison stimulus will be reinforced changes multiple times depending on what sample is presented.

Reversal Learning Assessment Matched comparisons. As a result of the differing contexts in which reversal learning is studied, there are several different methods that have been used to assess reversal shifts in individuals with autism and/or intellectual disability. One method has been the intradimensional/extradimensional (ID/ED) shift test from the Cambridge Neuropsychological Test Automated Battery (CANTAB). The ID/ED shift test is presented on a computer and includes a series of nine

Battery (CANTAB). The ID/ED shift test is presented on a computer and includes a series of nine stages in which discrimination problems of increasing difficulty are presented; four of the nine stages involve stimulus function reversals, whereas other stages involve other types of set-shifting. The dependent variables measured in this task include the number of errors to criterion per stage, the number of perseverative errors per stage, and the stage completed. Frequently, performance on this

number of perseverative errors per stage, and the stage completed. Frequently, performance on this task by individuals with autism who do not have intellectual disability is compared to one or more matched comparison groups. Often, performance on the reversal stages of the task is not reported, but some studies have included analysis from reversal stages; the data from theses stages are mixed in that some studies have reported that individuals with autism make more errors on extradimensional

that some studies have reported that individuals with autism make more errors on extradimensional reversals than do matched the comparison groups, whereas other studies have found no between-group differences. Reversal shifts have also been assessed using a spatial discrimination task. In this task, an object, such as a toy, is hidden beneath one of two cups that are placed side-by-side on a table in front of the participant. On each trial, the object is hidden in the same location (e.g.,

table in front of the participant. On each trial, the object is hidden in the same location (e.g., always beneath the left cup). For reversal trials, the object is then switched to the alternative location without a clue to the participant. There have been mixed findings from this task; some studies have reported that children with autism make more preservative errors than comparison groups, whereas others have not found significant group differences. One contributing factor to this difference

others have not found significant group differences. One contributing factor to this difference may be chronological age, as the participants in the studies that have not found deficits were younger than those in the studies that did report deficits.

Leung and Zakzanis (2014) conducted a meta-analysis of effect sizes of 72 studies investigating executive function in individuals with ASD that used a range of tests, many of which included discrimination reversals. In general, the only measure that exceeded their clinical marker threshold was an indirect measure (a behavior rating scale that was based on an informant response form assessing executive functioning in the home environment). One important difference between the rating scale and

functioning in the home environment). One important difference between the rating scale and the more common direct measures (i.e., the variety of tasks that assess reversal learning) is that the former is able to capture the complexity of the natural environment in a way that the latter cannot. For example, reversal assessments conducted in a laboratory setting on a computer involve a level of instructional control that is not present when rapid reversal responding is required in the natural

instructional control that is not present when rapid reversal responding is required in the natural environment (e.g., during a conversation). As noted above, when discrimination reversal learning is assessed in individuals with autism and no intellectual disability, there is mixed evidence for deficits relative to typically developing individuals. Recently, a few studies have been reported in which discrimination training and reversal testing has been conducted under conditions in which not

which discrimination training and reversal testing has been conducted under conditions in which not every correct response was reinforced (i.e., intermittent or probabilistic reinforcement conditions). Use of intermittent reinforcement in reversal tasks increases the overall complexity of both acquisition, initial reversal responding, and maintenance of reversal responding, which may render the task less susceptible to ceiling effects. Because only a few studies have used this measure, it

the task less susceptible to ceiling effects. Because only a few studies have used this measure, it remains unclear as to whether individuals with ASD show consistent deficits; however, there are reports of deficits on intermittent reinforcement reversal tasks being linked to clinical measures of restricted and repetitive behavior.

Small-n designs. The ability of individuals with moderate to severe intellectual disability and/or autism to make rapid reversals has also been assessed in studies that did not include matched-group comparisons. In these studies, the focus was to teach behaviors that are prerequisite to MTS performance. Some studies involved within-session reversals of stimulus discriminations presented on a computer touchscreen and others studies involved between-session reversals of three-dimensional object

touchscreen and others studies involved between-session reversals of three-dimensional object stimuli. Despite the differences in procedures across the various studies, similar results have been found: a small number of individuals eventually are eventually able to make rapid reversals to the point of demonstrating reversal learning-set (i.e., faster acquisition of each successive reversal problem), whereas most are not. Further, failures to observe reversal learning occurred even when

problem), whereas most are not. Further, failures to observe reversal learning occurred even when errorless teaching procedures were used to teach both the original discrimination problem and its reversal. These studies can be contrasted with recent work with typically developing preschoolers and toddlers, the majority of whom acquired rapid reversal learning performances. Finally, the acquisition of multiple reversals in the context of yoked-reversals in individuals with autism and

acquisition of multiple reversals in the context of yoked-reversals in individuals with autism and intellectual disability is of interest because it may lead to the formation of functional equivalence, one measure of symbolic functioning. In a yoked-discrimination-reversal task, individuals are required to concurrently solve two or more simple simultaneous discriminations. Different pairs of stimuli appear on irregularly alternating trials (e.g., A1 and A2, B1 and B2, C1 and C2). Initially, one

appear on irregularly alternating trials (e.g., A1 and A2, B1 and B2, C1 and C2). Initially, one member of each pair is designated as positive (A1, B1, C1), and the other negative (A2, B2, C2). In reversal sessions, reinforcement contingencies are reversed for all stimulus

in males. Motor clumsiness can be tested using the balance beam, rotarod, and footprint tests. Sensory hypersensitivity or hyposensitivity can be detected through the acoustic and tactile startle tests, as well as tests that measure pain sensitivity (e.g., hot plate, tail flick). Spontaneous seizures, audiogenic sei-zures induced by loud tones, or drug-induced sei-zures induced by administration of convulsants can be measured using observer scoring or EEG recordings. A potential pitfall of

of convulsants can be measured using observer scoring or EEG recordings. A potential pitfall of detecting pheno-types relevant to the associated symptoms of autism is that they may complicate interpretation of phenotypes directly relevant to a diagnostic symptom. For example, a mutant mouse line with high-anxiety-like behavior would likely display low levels of exploratory activity in the three-chambered social approach task, confounding interpretation of their social approach behavior. This

social approach task, confounding interpretation of their social approach behavior. This issue requires careful consideration for each animal model in which autism-relevant behavioral phenotypes have been detected.

Control Parameters When investigating autism-relevant behavioral phenotypes in animal models of ASDs, it is essen-tial to control for physical disabilities that could produce false positives in many of the behavioral tasks described here (Crawley 2007a). For exam-ple, a mutant mouse line with a gene mutation affecting olfactory functions could show deficits on social tasks based on successful detection of conspecific odors. Similarly, rats or mice treated with a drug that produces sedation will

of conspecific odors. Similarly, rats or mice treated with a drug that produces sedation will likely show impairments in social, cognitive, or motor tasks that are attributable to low overall activity as opposed to a reduction in reciprocal social inter-actions or a learning deficit. To rule out these types of artifacts, potential rodent models of autism must be evaluated on a series of tasks measuring general health, neurological reflexes, sensory abilities, motor functions, and home cage

measuring general health, neurological reflexes, sensory abilities, motor functions, and home cage behaviors (Crawley 2007b).

Future Directions Autism is a complex disorder with variable symp-toms, some of which may be uniquely human. For example, deficits in theory of mind, or the ability to intuit what another person is thinking or feel-ing, may be difficult to model in nonhuman ani-mals. However, recent reports suggest that mice display empathy-like behaviors following expo-sure to cagemates who have experienced a painful stimulus (e.g., Chen et al. 2009). Subtle language and communication deficits, such as the

a painful stimulus (e.g., Chen et al. 2009). Subtle language and communication deficits, such as the inability to understand humor or sarcasm, are unlikely to be successfully modeled in animals. However, detailed analysis of rodent ultrasonic vocaliza-tions may provide information about their com-municative value (Lahvis et al. 2011). Modeling complex cognitive abilities, such as executive functions and joint attention, is also a challenge. Researchers are starting to develop cognitive tasks

and joint attention, is also a challenge. Researchers are starting to develop cognitive tasks that evaluate sustained attention and attentional set-shifting abilities in rodents similar to those used to evaluate cognitive abilities in autistic indi-viduals (Brigman et al. 2005).

The occurrence of autism is significantly higher in males than in females, with a male to female ratio of 4:1 (Volkmar and Pauls 2003). Thus, an animal model that displays relevant phenotypes in males but not females could be considered to have face validity with regard to the prevalence of ASDs. Due to the higher prevalence of autism in males, many studies have only tested male animals (e.g., Bolivar et al. 2007; Hines et al. 2008; McFarlane et al. 2008; Moy et al. 2007, 2008b; Nakatani et al.

et al. 2007; Hines et al. 2008; McFarlane et al. 2008; Moy et al. 2007, 2008b; Nakatani et al. 2009; Pearson et al. 2010; Peca et al. 2011), precluding detection of possible sex differences. However, sex differences have been reported for a few animal models of autism. For example, social deficits have been detected in male but not female mice of the inbred C58/J strain (Ryan et al. 2010) and in male but not female rats exposed prenatally to valproic acid (Dufour-Rainfray et al. 2011). Other

male but not female rats exposed prenatally to valproic acid (Dufour-Rainfray et al. 2011). Other studies have tested both males and females and detected autism-relevant behavioral phenotypes in both sexes (e.g., Brodkin et al. 2004; Cheh et al. 2006; Etherton et al. 2009; Moy et al. 2004; Scattoni et al. 2011). Systematic investigations of sex differences in potential animal models of autism will likely lead to a better understanding of the etiology of ASDs.

Despite these challenges, animal models of autism have been useful for evaluating potential treatments. Early behavioral interventions have been the most effective treatments for the symp-toms of autism (Rogers and Vismara 2008). Med-ications have been reported to improve associated symptoms of autism such as hyperactivity or mood, but have not been shown to affect the diag-nostic features of autism. Both pharmacological and behavioral intervention strategies have been tested in mouse models

Both pharmacological and behavioral intervention strategies have been tested in mouse models such as the BTBR T + tf/J strain, which displays behavioral phenotypes rele-vant to all three diagnostic symptoms of autism (Bolivar et al. 2007; McFarlane et al. 2008; Pearson et al. 2010; Scattoni et al. 2008, 2011). A single injection of the drug 2-methyl-6-(phenylethynyl) pyridine (MPEP), a potent antagonist at mGluR5 subtype glutamate receptors, significantly reduced repetitive self-grooming in BTBR

at mGluR5 subtype glutamate receptors, significantly reduced repetitive self-grooming in BTBR mice (Silverman et al. 2010). Rearing BTBR mice with social C57BL6/J mice as cagemates after weaning signif-icantly improved their sociability in the three-chambered social approach task as adults (Yang et al. 2011a). Several potential drug candidates, such as other mGluR5 antagonists, rapamycin, brain-derived neurotrophic factor (BDNF), and oxytocin, have been shown to prevent or reverse aberrant

neurotrophic factor (BDNF), and oxytocin, have been shown to prevent or reverse aberrant phenotypes in a variety of mouse models of ASDs (reviewed in Silverman et al. 2010). Ani-mal models with robust and well-replicated behav-ioral phenotypes will be powerful tools for developing pharmacological and behavioral treat-ments for autism.

Anime, Manga, and the Etiology of Autism Historical Overview The origins of Anime and Manga are difficult to pinpoint. According to some historians, the earli-est form of sequential art in Japan emerged in twelfth-century Buddhist scrolls, the most famous of which were created by a monk named Bishop Toba (Brenner 2007). These scrolls were origi-nally created to express religious messages and folklorish narratives. Largely unknown by the general body of society, they soon made their way into

narratives. Largely unknown by the general body of society, they soon made their way into popular culture. This form of art went through a series of changes over the next few centuries, eventually entering the scope of enter-tainment. Illustrators sought to present cartoons in the same fashion, leading to the birth of modern day comics.

The term “Manga” was coined by artist Hokusai Katsuhika in the nineteenth century, which literally means “whimsical pictures” or “sketches.” Bound books with intricate story-lines were soon pro-duced and sold by the thousands. However, the content within the books was considered to be adult in nature and was therefore banned by the Tokugawa regime (Horbinski 2015). The era of modern Anime and Manga would soon be ushered in by the forces of globalization. With Japan’s historically isolated

Manga would soon be ushered in by the forces of globalization. With Japan’s historically isolated nature dwindling, the advent of modern technology would completely change the trajectory of Anime and Manga.

The arrival of US Commodore Matthew Perry on Japanese shores catalyzed drastic changes in Japan, with a brutal internal struggle between traditional isolationists and those who embraced the West overtaking the entire country. Eventu-ally, Japan would succumb to the influx of the Western way of living, struggling to update its society with technological advances among other changes. Japanese artists were fascinated by West-ern forms of art, and eventually created a hybrid that took the form of

were fascinated by West-ern forms of art, and eventually created a hybrid that took the form of modern day Manga maga-zines. The initial forms of Manga magazines were either politically oriented or meant for children. By the middle of the twentieth century, a new genre emerged. Adult Manga comics captivated the entire industry, with explicit representations of crime, sex, and violence. As a result, the more innocent renditions of Manga comics lost busi-ness and dwindled in their prevalence.

The development of Anime and Manga snowballed quickly, with comics progressing into television shows, movies, and trading cards. The most significant changes, however, were arguably seen in the fanbase of the genre. Previ-ously aimed at a politically inclined audience as well as children, Anime and Manga morphed into something of a lifestyle for its fans – of all ages, especially adults. One interesting phenomenon in particular is that of cosplay, a play on the words “costume” and “play.” The

phenomenon in particular is that of cosplay, a play on the words “costume” and “play.” The past few decades have seen cosplay fans gather from all over the world, spending inconceivable monies on intricate cos-tumes and, in some cases, plastic surgery, to resemble their favorite Anime and Manga charac-ters (Winge 2006). These subcommunities of the general Anime genre have experienced significant stigmatization in popular culture.

Among the main factors stigmatizing Anime and Manga fanbase is the reality that the over-whelming majority of amateur Manga artists focus on producing homoerotica and other sexu-ally explicit depictions. As a result, the fanbase became subject to significant controversy in the 1990s (Kinsella 1998). Further, the sheer obses-sion that Anime and Manga fans hold for their genre of interest is seemingly beyond any other fanbase. With other forms of entertainment typi-cally remaining in the realm of

beyond any other fanbase. With other forms of entertainment typi-cally remaining in the realm of a hobby, Anime and Manga seemed to have a tendency to categor-ically consume fans. Drastic changes in behavior, dress, speech, lifestyle, spending habits, and other intimately characteristic facets of individuality are not uncommon among fans of Anime and Manga. Anime and Manga fans call themselves “Otaku,” more commonly known with a more general term: “Hikikomori.” Otaku refers to, usually male,

“Otaku,” more commonly known with a more general term: “Hikikomori.” Otaku refers to, usually male, Japanese fans between ages 18 and 40 that fanat-ically and compulsively consume Anime and Manga products (Azuma 2009). Originally a group of social outcasts bonding over a shared interest, the Otakus now represent a massive por-tion of the commercial market in Japan.

Of the peculiarities of this demographic is the tendency of psychological uniformity among many of the fans. There exists a surprisingly com-mon set of characteristics among a large portion of Otakus. Researchers have found that there seems to be a surprising association between individuals with autism spectrum disorder (ASD) and the Otaku demographic. While Otakus are often not officially diagnosed as autistic, the culture sur-rounding Anime and Manga has been called “autism-friendly” (Cowen

as autistic, the culture sur-rounding Anime and Manga has been called “autism-friendly” (Cowen 2010). The link between Anime, Manga, and ASD begs the ques-tion: should this raise any concerns?

Current Research The affinity that patients with autism spectrum disorder (ASD) have for Anime and Manga prod-ucts is not an unknown phenomenon to clinical psychologists and therapists. A study carried out with 91 randomized adolescents with ASD found that among the most often visited websites by the subjects fell into the category of anime (Kuo et al. 2013). In fact, this was the second most com-monly explored activity among the participants. This is a peculiar pattern, given that individuals

explored activity among the participants. This is a peculiar pattern, given that individuals with ASD typically exhibit extremely restricted interests (Koegel et al. 2015). High school stu-dents with ASD have also been found to gravitate towards only a handful of interests, one of which is the anime fandom (Wolf et al. 2009).

ASD symptoms in adults present in a fairly consistent manner. Common behaviors include preference for social isolation, stunted communi-cation skills, compulsive behavior, difficulty rec-ognizing verbal cues, restriction to either obsession or passiveness towards things, and highly animated approaches to social settings that may include aggression or overly indifferent behavior (Mayo Clinic). These behaviors are not alien to the average Otaku. In fact, the characteristics of Otakus are not much

behaviors are not alien to the average Otaku. In fact, the characteristics of Otakus are not much different from the manner in which higher functioning individuals with ASD are described in the West (VanBergeijk 2010).

A study focusing on the Hikikomori (a general term encompassing Otaku) subset of individuals found that about 20% of their Hikikomori patients could be diagnosed with pervasive developmental disorders, or PDD (Tateno et al. 2012). Diagnosis of PDD typically takes place once qualitative impairment in social interaction and restricted and compulsive patterns of behavior and interests are observed in a patient. This is commonly seen in Hikikomori and Otaku. Thus, diagnosis of PDD, especially ASD,

a patient. This is commonly seen in Hikikomori and Otaku. Thus, diagnosis of PDD, especially ASD, should be seriously con-sidered in Hikikomori and Otaku patients. The reality is that ASD is only known by the symp-toms exhibited in individuals that have it. There is no biological or genetic factor that has yet been clearly identified by the scientific community (Rozema 2015). This limits our understanding of ASD significantly. Consequently, the etiology of ASD is still unexplored territory.

understanding of ASD significantly. Consequently, the etiology of ASD is still unexplored territory. Because the Otaku community heavily exhibits symptoms of autism, a potential environmental etiology must be considered (Vuković 2014).

Future Directions Why individuals with ASD love Anime and Manga is largely unexplored territory. Robert Rozema mentions that it is estimated that 1 in 68 children fall on the autism spectrum (Rozema 2015). With such a high prevalence, it is important to study the behavioral patterns of this demo-graphic to achieve a firmer understanding of both ASD and the effects of Anime and Manga on a sociological and pathological level. Further-more, researchers much approach the topic with an open mind,

and pathological level. Further-more, researchers much approach the topic with an open mind, ready to reexamine previously held conceptions about ASD.

The etiology of ASD is still a topic of debate and scarce research. As mentioned, an Otaku is virtually indistinguishable from a high function-ing individual with ASD. It is not inconceivable that the captivating tendencies of Anime and Manga produce individuals that operationally fall on the autism spectrum. In other words, they may not traditionally have ASD as we understand it, but they have grown to develop the same symp-toms by way of their fanatical obsession with Anime and Manga

have grown to develop the same symp-toms by way of their fanatical obsession with Anime and Manga products. The umbrella that is ASD, understood to develop in the earliest stages of childhood, must perhaps be expanded to accom-modate those adults that develop the same behav-ioral characteristics later on.

Additionally, the phenomenon of Otaku cul-ture is viewed by many to be a pathological epi-demic that is crippling an entire generation. The erosion of social skills, restriction of interests, and displaying of obsessive behaviors are all detri-ments to the mechanics of day-to-day life. Given the rapidly expanding market for Anime and Manga products as well as the proliferating fanbase, sociologists must allocate efforts towards studying the societal effects of Otaku culture on the development

must allocate efforts towards studying the societal effects of Otaku culture on the development of youth. If the development of the fanbase in the West is towards the same tra-jectory as Japan, the impacts would be immense in the academic system, the corporate world, the fields of social work and therapy, as well as the structure of society as a whole. The relationship between Anime, Manga, and Autism is one of massive potential in understanding the etiology of ASD and perhaps curbing a looming

is one of massive potential in understanding the etiology of ASD and perhaps curbing a looming social epidemic.

Annual Review Synonyms Present level of growth or knowledge; Report of annual yearly academic progress  Definition The annual review is a formal meeting required by Individuals with Disabilities Education Act (IDEA) and conducted by the school to develop, review, or revise a student’s Individualized Education Pro-gram (IEP). IEPs also can be reviewed and revised any time during the year but have to be reviewed and updated at least once per year. The purpose of the annual review is to evaluate

to be reviewed and updated at least once per year. The purpose of the annual review is to evaluate and revise the basic educational program, instructional guide, place-ment, services, and, when the child is 14 or older, a transition plan. The participants include the child’s educational team members (e.g., the student [when appropriate], both parents, case manager, child’s teachers, a school representative other than the child’s teacher, and others can be invited at the discretion of the

representative other than the child’s teacher, and others can be invited at the discretion of the parents or the district board of education). Schools must provide parents with advanced notice in writing of the annual review meeting. During the meeting, team members review the child’s present level of functioning, progress in the general curriculum and towards IEP goals and objectives, and student needs. Teachers should provide progress-monitoring data for each of the goals and objectives; this

needs. Teachers should provide progress-monitoring data for each of the goals and objectives; this should include indicating if the goal is met, partially met, or unmet with specific descriptions and explana-tions as necessary. Also, the team members make recommendations for the next year’s program based on the child’s needs and progress with cur-rent goals and objectives. These include identifying new goals and objectives, determining the neces-sary levels and types of support for the child to

new goals and objectives, determining the neces-sary levels and types of support for the child to meet IEP goals, and considering and explaining place-ment options.

Antecedent-Behavior-Consequence (A-B-C) Analysis Definition An A-B-C analysis is a descriptive assessment that is conducted as an initial part of a complete functional behavior assessment. The goal of this analysis is to develop hypothesis regarding the function that a problem behavior serves for an individual with ASD. A-B-C analysis views behavior (B) as a function of the antecedents (A) that precede it and the consequences (C) that follow it. Typically, an A-B-C chart is used over an

that precede it and the consequences (C) that follow it. Typically, an A-B-C chart is used over an extended time period to record events that occur naturally rather than being systematically arranged. These events occur in the natural envi-ronment, with the observer recording the environ-mental events that occur immediately before the behavior in the (A) section, the specific behavior observed in the (B) section, and the events occur-ring immediately after the behavior in the (C) section.

Historical Background A-B-C analysis began in the 1960s with the beginnings of applied behavior analysis, with Sidney Bijou and colleagues asserting the impor-tance of collecting direct and repeated data on the observable interactions between the behavior exhibited by the organism and the events in naturally occurring conditions. Interrelation-ships between the behavior and past and future events were the primary data of interest. The first step of the analysis was a narrative record-ing, which

were the primary data of interest. The first step of the analysis was a narrative record-ing, which was a running description of occur-rences during an observational period, with no specific behavior targeted for observation. These descriptions were the first step in identifying a targeted behavior that would be measured for-mally in further analysis. These temporally sequenced events were translated into A-B-C forms that specified each behavior of interest and the events that occurred immediately

into A-B-C forms that specified each behavior of interest and the events that occurred immediately before and after the behavior.

In the 1970s, research conducted by Edward Carr and colleagues found that many problem behaviors were logically linked to a small set of antecedents and consequences. Specifically, these researchers stated than an individual with ASD usually exhibited problem behavior to either gain access to attention or a desired item or to escape an undesired event. With the growing body of research studies that supported these findings, the focus of A-B-C analysis narrowed. Currently, many A-B-C analyses

that supported these findings, the focus of A-B-C analysis narrowed. Currently, many A-B-C analyses focus on more severe prob-lem behavior, such as self-injury, aggression, tan-trums, and pica. Antecedent conditions usually consist of (1) demands, (2) attention removed, (3) preferred activity removed, and (4) alone. Sim-ilarly, consequence events that follow the problem behavior are often restricted in focus to (1) atten-tion provided in the form of reprimands or sooth-ing statements, (2)

in focus to (1) atten-tion provided in the form of reprimands or sooth-ing statements, (2) removal of demands, (3) access to preferred items, or (4) problem behavior is ignored or neutrally redirected. In addition, initiation of the A-B-C analysis is trig-gered by concerns regarding the problem behavior voiced by clinical or educational team.

Current Knowledge The customary usage of the A-B-C form is as one component of a complete functional behavior assessment of a problem behavior exhibited by the individual with ASD. However, these forms can be used for any socially significant behavior of interest. A-B-C forms can be open-ended, where the observer fills in any event that occurs before or after the behavior. Some A-B-C analyses specify time frames and define “immediately” specifically (e.g., as 20 s before or after the behav-ior

time frames and define “immediately” specifically (e.g., as 20 s before or after the behav-ior occurs).

The categories to be completed in the observa-tion are: 1. The observable behaviors (B) exhibited by the individual with ASD. When defining behavior, it is important to provide clear criteria of the behavior. (e.g., tantrums might be distin-guished from whining or crying by being described with an intensity and duration mea-sure, such as screaming and loud crying, that lasts more than 30 s. In addition, tantrums co-occur with one of the following behaviors: lying on the floor, kicking legs,

addition, tantrums co-occur with one of the following behaviors: lying on the floor, kicking legs, and/or swiping materials off desk). It is also important to record the extent to which the behavior co-occurs with other behaviors in a sequence. Such a sequence might be, for example, first, crying; second, falling on the ground; and third, throwing large objects at adults.

2. Antecedent events (A’s) that immediately pre-cede the behavior. 3. Consequent events (C’s) that immediately follow the behavior. The consequent events customarily recorded are the social behavior of the adult that is interacting with the individ-ual and include behaviors such as providing attention, feedback, reprimands, access to pre-ferred items/events, and ignoring.

It is also important to include information regard-ing the setting, other persons present, and materials available and include any other information that may be relevant, such as time of day, day of week, and any unusual events that may effect behavior. Information gathered from A-B-C analysis is used to develop hypothesis regarding the function (motivation) of the problem behavior and then develop subsequent treatment plans based on this information. Use of A-B-C forms requires training of

subsequent treatment plans based on this information. Use of A-B-C forms requires training of observers to limit their recordings to observable and measurable behaviors, as untrained observers have been reported to include subjective impres-sions of thoughts and feelings of the person observed. This might lead to instances of record-ing impressions such as “frustrated,” “mad,” “agi-tated,” or “sad.” In addition, sensitivity to the types of environmental events needs to be trained. It is not

“sad.” In addition, sensitivity to the types of environmental events needs to be trained. It is not uncommon for an untrained observer to record “nothing” as an event, and training on specificity of events to include aspects such as physical environment, persons present, and mate-rials available is necessary.

Narrative Recordings These recordings included a description of the setting, time, people present, and materials avail-able. The evaluator begins with a running narra-tive description of the individual’s behavior, such as “Ed is playing alone in the block center.” When the teacher says “Time to come to circle,” Ed continues to play with the blocks, and the teacher starts the circle without him. When the Aide taps Ed on the shoulder and says “Ed, it’s time to go to circle,” Ed throws the block

When the Aide taps Ed on the shoulder and says “Ed, it’s time to go to circle,” Ed throws the block at the aide. The aide then leaves Ed to play with the blocks, and the teacher conducts circle time with the other chil-dren. Here is sample sequence analysis of this recording into a three-column form of antecedents (A), behaviors (B), and consequences (C).

| Antecedent (what happened right before the behavior occurred?) | Behavior (record the behavior here) | Consequence (what happened right after the behavior occurred?) |
|---|---|---| | Ed is playing in the block center Teacher says “It’s time for circle” | Ed continues to play with blocks | Aide taps Ed and asks him to join the circle |
| Aide taps Ed and asks him to join the circle | Ed throws block at aide | Aide leaves Ed alone |

| Aide taps Ed and asks him to join the circle | Ed throws block at aide | Aide leaves Ed alone |
| Aide leaves Ed alone | Ed plays with blocks | Teacher and aide conduct circle without Ed |

The analysis is restricted to describing the par-ticipant’s behavior and excludes conjecture regarding the participant’s thoughts and feelings. For example, “He hits other children because he does not understand the situation” would not be included in the analysis, as understanding is not observable or measurable behavior. Finally, in A-B-C analysis, generalizations are not made about the environment and behavior, such as “He is a trouble maker who always gives the teacher a hard time.”

environment and behavior, such as “He is a trouble maker who always gives the teacher a hard time.” Finally, in this analysis, consequent events for one behavior can turn into antecedent events for the following behavior.

Open-Ended A-B-C Recording In this type of analysis, the narrative recording is omitted. The observer uses the A-B-C form when the specific targeted behavior occurs and records the antecedents and consequences that come before and after the targeted behavior. It is recommended that observers include the time the behavior started and ended, the intensity of the behavior, and any other important characteristics of the setting. An example of a form for this type of recording is in Table 1.

| Antecedent (what happened right before the behavior occurred?) | Behavior (record the behavior here) | Consequence (what happened right after the behavior occurred?) | Comments |
|---|---|---|---| | Ex. Teacher said “Time for math” while placing worksheet before student | Ex. Kicked teacher | Ex. Teacher says “It looks like you’re not ready for work” and takes worksheet and walks back to desk | |

Specific A-B-C Recording In this type of A-B-C analysis, the observer is provided with a specific checklist of A-B-C events to record in a specific ongoing time period. For example, the time period might consist of a 1-h block in the morning, and the observer would record specified behaviors that occurred during that time. In addition, the specified antecedents are recorded whether or not they were followed by problem behavior. This is distinguished from the open-ended recording described above

followed by problem behavior. This is distinguished from the open-ended recording described above that is only used when the targeted behavior occurs. This type of recording allows a more fine-tuned analysis of the relationship between the antecedent and behavior, as it would detect conditions where the antecedent occurred and the behavior did not follow, ruling out faulty correlations between antecedents and consequences.

The specific events recorded can be developed from preliminary information gathered from inter-views and/or narrative recordings. The following are possible specific antecedents, behaviors, and consequences used on these forms:

Antecedents * Demand * Request * Feedback * Denial * Reprimand * Transition * Alone * Removal or diversion of adult attention * One-to-one instruction * Group instruction * Physical contact * Social interaction * Engaged in preferred activity  Behaviors * Aggression * Tantrums * Self-injury * Bolting * Pica * Loud vocalizations * Stereotyped behavior * Noncompliance * Throwing * Property destruction  Consequences * Attention * Corrective feedback * Access to preferred item * Ignoring or

Consequences * Attention * Corrective feedback * Access to preferred item * Ignoring or redirecting behavior * Task demand * Task removed * Physical contact * Soothing * Automatic reinforcement (self-stimulation) * Reactive behavior management procedure – Time out – Overcorrection – Response cost – Contingent exercise  While the above list provides broad categories of environmental conditions to be analyzed, more fine-grained analysis is often warranted. For example, “task demand” can be

to be analyzed, more fine-grained analysis is often warranted. For example, “task demand” can be specified further as follows:

* Task demand – Instruction provided with only auditory cues – Instruction with auditory and visual cues – Instruction with only visual cues – Instruction with auditory, visual, and tactile cues Or * Task demand – Math task – Art task – Writing task – Expressive speech task  The important point to remember is that the A-B-C analysis should be provided with enough specificity to identify the relevant variables that trigger and maintain the problem behavior. If a student will play with all toys

variables that trigger and maintain the problem behavior. If a student will play with all toys with the exception of puzzles, this should be specified in the analysis. The sample form in Table 2 lists specific cate-gories of antecedents, behaviors, and conse-quences for the observer to check off. Using this form, the observer records the antecedent events as they occur, even if the problem behavior does not occur after the antecedent.

| Antecedent (circle antecedent) | Behavior (circle behavior) | Consequence (circle consequence) |
|---|---|---| | Demand/instruction | Self-injury | Provide adult attention | | Transition | Aggression | Give preferred item or activity | | Playing alone | Tantrums | Remove adult demand | | Adult attention removed | Provide adult attention | Restrict access to preferred item/activity |

| Adult reprimand | Other:_____________________ | Other:_____________________ | | Demand/instruction | Self-injury | Provide adult attention | | Transition | Aggression | Give preferred item or activity | | Playing alone | Tantrums | Remove adult demand | | Adult attention removed | Provide adult attention | Restrict access to preferred item/activity |

| Adult reprimand | Other:____________________ | Other:_____________________ |  After the data are collected, summary state-ments are developed for each major antecedent or consequence of the behavior and hypotheses are generated regarding the function of the prob-lem behavior.

Future Directions While there is a growing body of peer-reviewed research studies that shows that while the data collected from A-B-C observations is useful, additional studies have asserted that functional analysis is a more reliable method of identifying variables that control the behavior, and therefore, manipulating these variables lead to more suc-cessful treatments. It is therefore recommended that information gathered from the descriptive A-B-C analysis be used as an initial

recommended that information gathered from the descriptive A-B-C analysis be used as an initial information-gathering step that precedes a formal functional (experimental) analysis. There is controversy regarding this recommendation, as it is argued by some that the information from the A-B-C analysis is sufficient to form hypothesis regarding the motivation of problem behavior that can lead to effective treatments. The time, cost, and con-trolled clinical settings required to conduct a

to effective treatments. The time, cost, and con-trolled clinical settings required to conduct a thor-ough functional analysis is often not available in customary educational and clinic settings where treatment is provided.

Current A-B-C analyses are restricted to recording observable events in the environment that may predict the occurrence of problem behav-ior. These events are restricted to immediate ante-cedents and consequences, which have been referred to as near triggers. Future analysis are taking into account far triggers such as lack of sleep, a death in the family, moving residences, or other changes in events that may not be immedi-ately apparent in the A-B-C setting. It is recommended to use

in events that may not be immedi-ately apparent in the A-B-C setting. It is recommended to use equipment to measure bio-logical variables, such as increased or decreased heart rate, the need to urinate, physical pain, and low blood sugar when identifying predictors of problem behavior in the future.

It is argued that underlying characteristics of the individual with ASD can also be strong pre-dictors of behavior. These can include deficiencies such the ability to process complex auditory infor-mation, cognitive limitations, and difficulty with abstract reasoning. In addition, the effects of anx-iety and mood disorders could be considered as contributing factors to behavior.

Anterior Cingulate Synonyms ACC  Structure The anterior cingulate cortex (ACC) is in the frontal portion of the cingulate cortex, situated medially just above the corpus callosum. The ACC consists of Brodmann areas 24, 25, 32, and 33. Vogt and colleagues (Vogt 2009) defined four major subdivisions of the rostral ACC. These include a supracallosal portion (above the corpus callosum), designated “midcingulate cortex,” which is divided into an anterior and a posterior portion. The aspect of the

“midcingulate cortex,” which is divided into an anterior and a posterior portion. The aspect of the cingulate lying anterior and ventral to the corpus callosum is designated “anterior cingulate.” This region is further divided into a pregenual region (more anterior) and sub-genual region (more ventral). Based on observed functional differences (Bush et al. 2000), neuro-scientists often distinguish between a “cognitive” dorsal portion of the ACC and an affective ventral portion of the ACC. The

between a “cognitive” dorsal portion of the ACC and an affective ventral portion of the ACC. The dorsal ACC is connected to the prefrontal, parietal and motor cortices, and motor and frontal eye fields whereas the ventral ACC is connected to the more traditional limbic regions including the amygdala, nucleus accumbens, anterior insula, and hypothalamus. More recently, Shackman et al. (2011) provided a coordinate-based meta-analysis of neuroimag-ing studies suggesting the cognitive-affective

a coordinate-based meta-analysis of neuroimag-ing studies suggesting the cognitive-affective demarcation of the ACC is less clear-cut than was originally assumed.

Function The anterior cingulate’s functions are diverse, including the cognitive control of motor behavior in response monitoring (Botvinick et al. 2001; Devinsky et al. 1995; Holroyd and Coles 2002), reward-based learning (Holroyd & Coles), regis-tering physical (Craig et al. 1996) and social pain (Eisenberger and Lieberman 2004), empathy, con-sciousness, and autonomic functions.

The ACC is implicated in the related processes of conflict monitoring, response inhibition, and error detection. On simple behavioral paradigms such as the Stroop color word interference task, the individual is charged with responding to the color of a word when the word color differs from the written word (e.g., the word blue written in yellow text). In this task conflict is engaged because the automaticity involved in reading the word conflicts with the different color of the printed word.

automaticity involved in reading the word conflicts with the different color of the printed word. However, the ACC has been shown to be activated independently of the pres-ence of response alternatives on a Stroop-like task suggesting a role as a top-down regulator increas-ing the amount of “top-down” regulation required to meet the task demands (Roelofs et al. 2006). In doing so, the ACC would selectively enhance the activation of a correct response pending some selection threshold to be

selectively enhance the activation of a correct response pending some selection threshold to be exceeded (Roelofs et al. 2006). The incorrect response must be inhibited in favor of the correct response. If an incorrect response is executed, it needs to be detected to adjust performance accordingly. In this process, the ACC appears to be involved in error detection, regardless of whether or not errors are consciously perceived, and in the perception of errors commit-ted by others (Gentsch et al.

are consciously perceived, and in the perception of errors commit-ted by others (Gentsch et al. 2009; Hester et al. 2005; Holroyd et al. 2004; Klein et al. 2007; Ullsperger and von Cramon 2001; Ullsperger et al. 2007).

The role of the ACC in response monitoring and reward processing has been linked in a general reinforcement model that attempts to account for error processing, feedback processing, and rein-forcement learning more generally. Here, the dorsal ACC is thought to use reward prediction error signals, conveyed via the mesencephalic dopamine system, to reinforce adaptive behavioral responses (Holroyd and Coles 2002). As noted by Holroyd and Coles (2008), two general types of theories have been

and Coles 2002). As noted by Holroyd and Coles (2008), two general types of theories have been proposed to describe the role of the dorsal ACC in response monitoring processes. Some theories propose the ACC serves an evalua-tive role to detect errors or conflict. The response selection perspective suggests ACC is directly involved in the decision making process (Holroyd & Coles). Other neuroimaging work implicates the ACC, but not specifically the dorsal ACC in out-come anticipation, uncertainty

work implicates the ACC, but not specifically the dorsal ACC in out-come anticipation, uncertainty of outcome (Critchley et al. 2001a), subjective value of poten-tial rewards (Kable and Glimcher 2007), and imag-ined or “fictive” rewards (Hayden et al. 2009).

A growing body of work implicates the ACC in physical pain, social pain, and empathy-related processes. In terms of physical pain, recent neuro-imaging work indicates the ACC is associated with the unpleasantness aspect of physical pain (Rainville et al. 1997). Studies of social exclusion, a socially painful experience, indicate that some of the same neural circuitry, including the ACC, is involved in the distressing aspect of being excluded by others in a group (Eisenberger and Lieberman

in the distressing aspect of being excluded by others in a group (Eisenberger and Lieberman 2004). Among typically developing adolescents, neural response to social rejection engages brain regions involved in affective distress (subgenual anterior cingulate, anterior insula) and affect regu-lation (ventrolateral PFC, ventral striatum) (e.g., Masten et al. 2011; Sebastian et al. 2011). Interest-ingly, the anterior cingulate cortex is part of a network consistently engaged in studies of empa-thy

the anterior cingulate cortex is part of a network consistently engaged in studies of empa-thy for others’ pain (Krach et al. 2011).

The ventral ACC has been implicated in emo-tion processing (for reviews see Bush et al. 2000; Shackman et al. 2011). The ventral ACC has been shown to be engaged in modulation of the sym-pathetic as well as the parasympathetic aspects of the autonomic nervous system (Critchley et al. 2001b; Matthews et al. 2004). As part of a net-work of higher cortical structures including the insula, amygdala, and hippocampus, the ventral ACC is connected to lower structures that have been dubbed the central

and hippocampus, the ventral ACC is connected to lower structures that have been dubbed the central autonomic network (Benarroch 1993).

Pathophysiology Emerging evidence at the levels of cell micro-structure, neuronal connectivity, and brain vol-ume suggest abnormalities in the ACC of people with an autism spectrum disorder (ASD). In post-mortem work, Simms and colleagues (Simms et al. 2009) observed that individuals with autism had smaller neurons and reduced neuronal density in the ACC. They specifically examined von Economo neurons (VENs). Interest in VENs in ASD has burgeoned recently given their putative role in emotional

(VENs). Interest in VENs in ASD has burgeoned recently given their putative role in emotional regulation and social interaction (Allman et al. 2005; Allman et al. 2010). Simms et al. (2009) found that while VENs did not differ from control brains overall, a subset of (n ¼ 3) ASD individuals had significantly increased VEN density whereas the remaining six individuals had reduced VEN density compared to controls. Suda et al. (2011) recently documented the expression of axon guidance proteins were

to controls. Suda et al. (2011) recently documented the expression of axon guidance proteins were significantly lower in the ACC region among autistic individ-uals compared to controls (Suda et al.). Similarly, in an examination of ACC single cell axons in brain white matter, Zikopoulos and Barbas (2010) found evidence for a decrease in long axons that communicate over long distances and an excessive number of thin axons linking the ACC to neighboring areas. Other work points to the role of

number of thin axons linking the ACC to neighboring areas. Other work points to the role of GABAergic (gamma-aminobutyric acid) func-tion in the ACC in ASD (Zikopoulos and Barbas). GABAergic neurons have chiefly inhibitory action at receptors in the brain. GABA is impor-tant for normal cortical functioning, information processing, and cytoarchitecture during brain development (Di Cristo 2007). For instance, in a pair of studies Oblak, Gibbs, and Blatt (2009, 2010) observed reductions in GABAA

instance, in a pair of studies Oblak, Gibbs, and Blatt (2009, 2010) observed reductions in GABAA and GABAB receptor densities in the ACC (Oblak et al. 2009, 2010). Lastly, Nakamura et al. (2011) conducted a postmortem study implicating the serotonin (5-HT) system in the ACC to ASD. In the brain, serotonin plays an important role in mood regulation sleep and appetite. Nakamura et al. (2011) observed that the expression of a protein that regulates the serotonin transporter (5-HTT), STX1A, was

that the expression of a protein that regulates the serotonin transporter (5-HTT), STX1A, was significantly lower in the ACC region in an autism group compared to con-trols (Nakamura et al. 2011).

In vivo research documents altered ACC cell membrane metabolism (Levitt et al. 2003). Employing positron emission tomography (PET), Ohnishi et al. (2000) found decreased left ACC cerebral blood flow (Ohnishi et al.). Simi-larly, Haznedar et al. (1997) observed reduced glucose metabolism throughout the cingulate gyrus and reduced right ACC volume (Haznedar et al.). Moreover, in the ASD group, glucose metabolism was positively associated with social interaction, verbal communication, and

glucose metabolism was positively associated with social interaction, verbal communication, and nonverbal communication scores.

In terms of connectivity with other brain regions, Welchew et al. (2005) observed atypical connectivity of the ACC with inferior occipital and inferior frontal cortices (Welchew et al.). In the first study using diffusion tensor imaging in ASD, Barnea-Goraly et al. (2004) observed that ASD children had reduced ACC fractional anisot-ropy (FA), a measure thought to reflect fiber den-sity, axonal diameter, and myelination in white matter, extending to adjacent regions including the ventromedial

diameter, and myelination in white matter, extending to adjacent regions including the ventromedial frontal area and subgenual pre-frontal region, bilateral temporoparietal junctions, and adjacent superior temporal gyrus (Barnea-Goraly et al.). Similarly, Noriuchi et al. (2010) observed that FA was significantly lower in a child ASD group in the mid and right ACC among other regions (Noriuchi et al.). Using dif-fusion tensor imaging, Ke et al. (2009) observed decreased white matter density in a

Using dif-fusion tensor imaging, Ke et al. (2009) observed decreased white matter density in a high-functioning autism group in the right frontal lobe, left parietal lobe, and right anterior cingulate and increased white matter density in the right frontal lobe, left parietal lobe, and left cingulate gyrus compared to control children (Ke et al.). Lastly, in terms of grey matter, Waiter et al. (2004) documented an increase in grey matter volume in the ACC among male adolescent ASD subjects

(2004) documented an increase in grey matter volume in the ACC among male adolescent ASD subjects (Waiter et al.).

A growing number of studies find individuals with ASD have deficits in response monitoring. Response monitoring is an executive task sub-served by the ACC. Response monitoring specif-ically refers to evaluating whether one’s actions are consistent with one’s goals and modifying behavior accordingly to optimize outcomes. In a recent fMRI study, Thakkar et al. (2008) used a performance monitoring task finding that individ-uals with ASD had increased rostral ACC activa-tion which was related to

task finding that individ-uals with ASD had increased rostral ACC activa-tion which was related to repetitive behaviors (Thakkar et al.). In terms of behavioral responses, Russell and Jarrold (1998) reported reduced error self-correction among adults with ASD (Russell and Jarrold). Bogte, Flamma, van der Meere, and van Engeland (2007) observed reduced post-error slowing in ASD, an index of behavioral correction to improve performance on a subsequent trial (Bogte et al. 2007). In one of the first

correction to improve performance on a subsequent trial (Bogte et al. 2007). In one of the first ERP studies suggesting abnormal response monitoring in high-functioning ASD, Henderson et al. (2006) observed increased latency in the ERN event-related potential response, and poorer behavioral performance overall. ASD children did not differ from comparison children in terms of ERN ampli-tude, but ASD probands with higher IQs showed significantly larger ERN responses, suggesting hypersensitivity to

probands with higher IQs showed significantly larger ERN responses, suggesting hypersensitivity to errors among this group. In a second study with ASD children, Vlamings, Jonkman, Hoeksma, van Engeland, and Kemner (2008) observed smaller ERNs and a lack of post-error slowing behaviorally (Vlamings et al. 2008). The authors observe this finding, coupled with a comparable correct trial negativity (CRN) for ASD and typical children is consistent with per-severative behavior seen in ASD children (for

for ASD and typical children is consistent with per-severative behavior seen in ASD children (for a similar finding in adults see Santesso et al. (2010)). Interestingly, a recent study employing a reward-loss feedback task did not find differ-ences in a related brain response thought to be subserved by the ACC, the feedback-related neg-ativity (FRN) (Larson et al. 2011). These data suggest that individuals with ASD process exter-nal, concrete feedback similarly to typically developing

that individuals with ASD process exter-nal, concrete feedback similarly to typically developing individuals.

Not surprisingly, anterior cingulate dysfunc-tion also continues to emerge when the experi-mental paradigm involves social functioning. A meta-analytic examination of 24 studies on social information processing and 15 nonsocial studies by Di Martino et al. (2009) suggests that a distributed system involving the ACC and the anterior insula was hypoactive for individuals with autism – in nonsocial studies the ASD indi-viduals were more likely to show activation in the rostral ACC, which is

studies the ASD indi-viduals were more likely to show activation in the rostral ACC, which is typically suppressed in attention-demanding tasks. Importantly, we see deficits in the functioning of this specific circuitry in social challenge tasks such as social rejection/ exclusion paradigms. Compared to controls, chil-dren and adolescents with ASD showed hypo-activation in the ventral ACC and right insula when they were excluded from a simple computer game by same-aged peers (Bolling et al. 2011;

insula when they were excluded from a simple computer game by same-aged peers (Bolling et al. 2011; Masten et al. 2011).

Other recent social-cognitive work employing experimental paradigms seems to tap monitoring processes as described above, but social monitor-ing in particular. Recently, Chiu et al. (2008) provided evidence that atypical neural self-representation in ASD involves the cingulate cortex. In typical adolescents and young adults, self-referential compared with other-referential processing preferentially recruited the middle cin-gulate cortex and ventromedial prefrontal cortex-ASD individuals did

recruited the middle cin-gulate cortex and ventromedial prefrontal cortex-ASD individuals did not show this self-referential preference. Instead, ventromedial prefrontal cor-tex responded equally to self and other, while middle cingulate cortex responded more to other-mentalizing than self-mentalizing (Chiu et al.). Importantly, the lack of cingulate “self” response pattern in the ASD group related para-metrically to ASD symptom severity. In another important study, Kennedy and Courchesne

related para-metrically to ASD symptom severity. In another important study, Kennedy and Courchesne (2008) had autism and control participants make true/ false judgments for statements about themselves (“self” condition) or a close other person (“other” condition) and related to psychological personal-ity traits (“internal”) or observable characteristics/ behaviors (“external”). Within the ventral medial prefrontal cortex and ventral anterior cingulate cortex, activity was reduced for the ASD

medial prefrontal cortex and ventral anterior cingulate cortex, activity was reduced for the ASD group across all conditions and also during a rest condi-tion, suggesting task-independent dysfunction in this region (Kennedy and Courchesne).

While clearly a large amount of data supports ACC involvement in the autism phenotype, the ACC should not be considered the only neural structure relevant to autism pathophysiology. First, the ACC is connected to multiple brain and body systems that may be more or less affected in the disorder. Second, and relatedly, functioning in the ACC contributes to self-regulatory and social cognitive abilities, but in concert with other brain and body systems. Third, functioning in the ACC cannot

abilities, but in concert with other brain and body systems. Third, functioning in the ACC cannot account for all aspects of the autism phenotype more gen-erally (e.g., language delays). Thus, future work examining ACC function in autism will need to incorporate new developments in our understand-ing of ACC anatomy and function (Shackman et al. 2011; Vogt 2009) coupled with nuanced and yoked paradigms that can be used to parse ACC-relevant functions (Bolling et al. 2011; Chiu et al. 2008)

paradigms that can be used to parse ACC-relevant functions (Bolling et al. 2011; Chiu et al. 2008) explicit examination of individual differences (Henderson et al. 2006) and a neural systems perspective (Mundy et al. 2010). There again, autism emerges in a developing organism necessitating developmental studies tracking the course of ACC development against the backdrop of typical ACC development (Pelphrey et al. 2011). As of yet, we do not know whether or not the ACC dysfunction plays a causal

(Pelphrey et al. 2011). As of yet, we do not know whether or not the ACC dysfunction plays a causal role in the emergence of the disorder or is secondary to hav-ing the condition.

Anticholinergic Definition Acetylcholine is a chemical that transmits mes-sages between nerve cells in the brain. Centrally acting anticholinergic drugs block the effect of acetylcholine in the brain. These drugs are used to counteract adverse effects of antipsychotic medica-tions. Acetylcholine is a major neurotransmitter in the brain. Acetylcholine and dopamine are in a dynamic balance in the brain. Because many anti-psychotic medications block dopamine receptors in motor regions of the

the brain. Because many anti-psychotic medications block dopamine receptors in motor regions of the brain, there is a relative excess of acetylcholine. This gives rise to the commonly observed neurological side effects of antipsychotic medications such as tremor, dyskinesia, and dystonia. These adverse effects typically occur early in treatment, are unpleasant, and may pose a serious threat to medication adherence. Anticholin-ergic medications such as benztropine are often useful in reducing

medication adherence. Anticholin-ergic medications such as benztropine are often useful in reducing these neurological effects of antipsychotic medications (link to “Psychopharma-cology” section of this encyclopedia). The anticholinergic drugs can also have adverse effects. In the low doses used to treat neurological side effects of antipsychotic medica-tions, adverse effects are not common. At higher doses, adverse effects can include confusion and memory problems, and hallucinations can

At higher doses, adverse effects can include confusion and memory problems, and hallucinations can occur.

Anticholinesterase Inhibitors Synonyms Acetylcholinesterase inhibitors; AChE-inhibitors  Definition Acetylcholine (ACh) is a neurotransmitter key in an individual’s ability to adapt to his/her environ-ment and surrounding stimuli. ASD patients show many deficits in ACh production and receptor function. Acetylcholinesterase is an enzyme involved in the degradation of acetylcholine. Anti-cholinesterase inhibitors, or acetylcholinesterase inhibitors (AChE-inhibitors), seek to block the action of

inhibitors, or acetylcholinesterase inhibitors (AChE-inhibitors), seek to block the action of this enzyme, thus increasing ACh levels and action durations. Examples that have been tested and shown beneficial effects in ASD patients include rivastigmine, donepezil, and galantamine. Improvements in expressive speech are consistent across the drugs. Reports also include improvements in irritability, hyperactivity, receptive language, social withdrawal, inattention, and anger management. Side-effect

receptive language, social withdrawal, inattention, and anger management. Side-effect profiles include diarrhea, nausea, and vomiting. Currently AChE-inhibitors are some of the most promising class of drugs in treatment of dementia, especially in Alzheimer’s disorder, indicating some degree of alleviation in memory dysfunction. They are delivered orally, rapidly absorbed, and metabo-lized via CYP P450 isoenzymes CYP2D6 and CYP3A4 in the liver. Their relatively minimal side-effect profiles

CYP P450 isoenzymes CYP2D6 and CYP3A4 in the liver. Their relatively minimal side-effect profiles combined with demonstrated slight improvement in ASD symptoms make them an attractive candidate for ASD pharmacology. However, substantial validation of their consistent effectiveness and minimal side effects in ASD patients specifically is still required.

Anticipated Regression Definition Under current federal law, and as clarified in several court cases and policy explanations, ser-vices for the extended school year (ESY) for children with disabilities (either because they have an IEP or 504 plan) can be provided in some contexts. Historically, the potential for the child to regress (anticipated regression) has been regarded as one of the most relevant of these; even here, however, multiple factors should be taken into account. This regression

of these; even here, however, multiple factors should be taken into account. This regression would typically be defined by a loss of knowl-edge or skills that reflects an interruption of educational programming, placing the gains the child has made at risk. The factors considered by the IEP team have to do with maintenance of skills as well as the nature and severity of the disability.

Antidepressant Medications Definition Medications, including monoamine oxidase inhibi-tors (MAOIs), tricyclic and tetracyclic antidepres-sants (TCAs), selective serotonin reuptake inhibitors (SSRIs), and serotonin-norepinephrine reuptake inhibitors (SNRIs), used to treat depressive disorders, conditions characterized by depressed mood often along with other symptoms including the following: changes in appetite, changes in sleep habits, low energy, low self-esteem, poor concentra-tion, and

changes in appetite, changes in sleep habits, low energy, low self-esteem, poor concentra-tion, and feelings of hopelessness.

Historical Background The first types of antidepressants to be developed, sometimes referred to as the first-generation anti-depressants, include the MAOIs and TCAs. The first of the MAOIs to be developed was ipronia-zid, a drug initially marketed in 1952 for the treatment of tuberculosis. When it was shown that iproniazid appeared to induce euphoria in patients and reversed the effects of reserpine, a known depressant, Saunders and Kline began using iproniazid to treat clinical depression. Kline

a known depressant, Saunders and Kline began using iproniazid to treat clinical depression. Kline published an article on its clinical use for the treatment of depression in 1958. Although its adverse effects caused its use to be discontinued, iproniazid was replaced by other compounds that inhibit monoamine oxidase. However, the MAOIs were found to exhibit adverse reactions with other drugs and amines. The development of the TCAs began at the same time as that of the MAOIs. The first TCA to be

amines. The development of the TCAs began at the same time as that of the MAOIs. The first TCA to be developed, imipramine, was tested as a neuroleptic agent when it was found to relieve depressive symptoms. Comparing the mecha-nisms of action of the MAOIs and the TCAs caused investigators to recognize that increasing the amount of synaptic neurotransmitter was important for the treatment of depression.

SSRIs, considered to be second-generation antidepressants, were developed to have the spe-cific mechanism of action of the inhibition of the reuptake of serotonin (5-HT) which resulted in similar treatment effectiveness compared to the TCAs, with decreased side effect profiles in all of the SSRIs besides zimelidine. Zimelidine was the first SSRI to be developed, but its production was discontinued due to its toxicity. Fluoxetine, the first SSRI to be marketed that is still in use, was first

due to its toxicity. Fluoxetine, the first SSRI to be marketed that is still in use, was first marketed by Eli Lilly and Co. in 1987. Another antidepressant medication first marketed in the 1980s is bupropion, an antidepressant with the brand name Wellbutrin which is not a seroto-nin reuptake inhibitor (SRI) but instead may facil-itate dopamine (DA) neurotransmission and may affect norepinephrine (NE).

Development of the third-generation antide-pressants began with the goal of obtaining com-pounds which expand upon the functionality of the SSRIs to include other pharmacological effects thought to affect depressive symptoms while maintaining low side effect profiles. The development of SNRIs as antidepressants followed the development of SSRIs starting in the 1980s, although testing for the appropriate approval for clinical use for the first SNRI marketed was not completed until 1993.

the appropriate approval for clinical use for the first SNRI marketed was not completed until 1993. Nefazodone is a third-generation antidepressant first marketed in the United States in 1994 which inhibits the reuptake of 5-HT and NE, as well as acting as an antagonist at the 5-HT2A and α1-adrenergic receptors. Another third-generation antidepressant, mirtazapine, was first marketed in the United States in 1996 and inhibits the reup-take of 5-HT and NE, as well as acting as a noradrenergic

States in 1996 and inhibits the reup-take of 5-HT and NE, as well as acting as a noradrenergic α2-autoreceptor blocker and a 5-HT2 and 5-HT3 antagonist.

Current Knowledge Research has suggested that 5-HT, NE, and DA are involved in the pathophysiology of depres-sion. Each of the antidepressants developed to date affects one to all three of these neurotrans-mitters in the central nervous system (CNS). Although many different antidepressant drugs and families of antidepressant drugs with different functionalities exist, including the SSRIs, SNRIs, TCAs, and MAOIs, currently these drugs do not differ much from one another in efficacy. How-ever,

TCAs, and MAOIs, currently these drugs do not differ much from one another in efficacy. How-ever, different individuals may have a greater treatment response to one antidepressant medica-tion than to another. Family history of clinical response to a specific antidepressant medication may be a predictor for the response of an individ-ual to that drug in some cases.

The SSRIs are a commonly prescribed group of antidepressant medications which relieve symptoms of depression by selectively blocking the reuptake of 5-HT. This action of SSRIs in the CNS causes an increase in the amount of synaptic 5-HT. Before the neurons are desensitized to drug, this increase in synaptic 5-HT is counteracted by the stimulation of the presynaptic 5-HT1A auto-receptor which inhibits the further release of 5-HT into the synapse. After about 10–14 days of drug treatment, this

the further release of 5-HT into the synapse. After about 10–14 days of drug treatment, this autoreceptor is desensitized, and the amount of synaptic 5-HT increases. The five SSRIs currently FDA-approved to treat major depressive disorder (MDD) and marketed in the United States are fluoxetine, sertraline, paroxe-tine, citalopram, and escitalopram. Fluoxetine, with the brand names Prozac and Sarafem, is also marketed for the treatment of obsessive-compulsive disorder (OCD). Sertraline, with the