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+According to the American Speech-Language-Hearing Association (ASHA) (2005), CAPD refers to difficulties in the perceptual processing of auditory information in the central nervous system and is demonstrated by poor perfor-mance in one or more of the following tasks: sound localization and lateralization; auditory discrimina-tion; auditory pattern recognition; temporal aspects of audition, including temporal integration, tempo-ral discrimination (e.g., temporal gap detection), temporal ordering, and temporal masking; auditory performance in competing acoustic signals (including dichotic listening); and auditory perfor-mance with degraded acoustic signals. Despite this characterization, there remains little professional agreement about how CAPD should be defined, diagnosed, or treated (Dawes and Bishop 2009).
+
+### Epidemiology
+
+There are currently no epidemiological data concerning CAPD in children.
+
+### Natural History, Prognostic Factors, and Outcomes
+
+There are currently no longitudinal studies of children with CAPD with which to address ques-tions of history, prognosis, or adult outcomes.
+
+### Clinical Expression and Pathophysiology
+
+Reported symptoms of CAPD may include difficul-ties understanding speech in noise, difficulties fol-lowing or understanding verbal instructions, poor attention and high distractibility, and communica-tion, language, reading, and academic difficulties.
+
+### Evaluation and Differential Diagnosis
+
+ASHA (2005) best practice guidelines recom-mend diagnosis by a multidisciplinary team that includes a minimum of an audiologist and a speech-language pathologist. Peripheral hearing should be thoroughly investigated using hearing thresholds, immittance measures, and otoacoustic emissions (Dawes and Bishop 2009). There are, however, no firm guidelines as to what standard-ized tests of auditory processing should be included, how many tests are required to tap the range of skills that may be compromised, or what cutoff would be indicative of a clinically signifi-cant impairment in central auditory functioning. Part of the controversy surrounding this disor-der appears to stem from the methods of assess-ment and the degree to which they involve speech stimuli (Dawes and Bishop 2009). When such tasks are included, it is difficult to ascertain the origin of the problem: If a child’s language is impaired, he or she might perform poorly on tests of speech discrimination in noise because of limitations in linguistic ability rather than a central auditory processing disorder. On the other hand, many language-based tasks will require the auditory processing abilities listed above. ASHA (2005) clarifies the situation to some extent by stating: although abilities such as phonological awareness, attention to and memory for auditory information, auditory synthesis, comprehension and interpreta-tion of auditorily presented information, and similar skills may be reliant on or associated with intact central auditory function, they are considered higher order cognitive-communicative and/or language-related functions and, thus, are not included in the definition of CAPD. Differential diagnosis is a clinical concern; Dawes and Bishop (2009) point out that 50% of children meeting criteria for CAPD also meet criteria for other developmental disorders such as ADHD, autism spectrum disorder (ASD), or spe-cific language impairment (SLI). The degree of overlap raises issues about CAPD as a coherent diagnostic entity, and some have argued that the choice of diagnostic label reflects the concep-tualization of the problem by the professional assessing the child (Ferguson et al. 2011). In other words, a child with poor attention and language delay may be diagnosed with CAPD by an audiologist, DLD by a speech-language pathol-ogist, or ADHD/ASD by a clinical psychologist.
+
+The difficulty is in determining the nature of the relationship between auditory processing difficul-ties and the developmental disorders associated with those difficulties. For example, if a child pre-sents with delayed language development, it may be reasonable to assume that these language diffi-culties are the result of difficulties processing sound. However, as noted above, language diffi-culties may interfere with the child’s ability to do tasks that assess auditory perceptual performance. Equally, there may be a third factor that disrupts both language development and auditory pro-cessing, yielding a strong association between the two even though they may be causally unrelated (see Bishop 2011 for discussion). Tests of CAPD frequently require children to make judgments about sounds; even when the stimuli are tones rather than speech sounds, lan-guage ability may affect performance. For exam-ple, Marshall et al. (2001) reported that many typically developing children spontaneously adopted a strategy of labeling tones as “high” or “low” and that this labeling facilitated perfor-mance on similarity judgment tasks. Thus, chil-dren with SLI may be disadvantaged on assessments of CAPD, though it is the case that a substantial minority of children with SLI do experience auditory difficulties (see Dawes and Bishop 2009). It is less clear that these auditory difficulties are causally related to language impairment, though feasibly that may contribute to language learning difficulties (Bishop 2011). However, it is also clear that many children diag-nosed with CAPD have considerable language difficulties and often do not differ from children with SLI with regard to language and cognitive profile (Ferguson et al. 2011). These findings again raise the question of whether these are diag-nostically and etiologically distinct categories or whether they reflect professional biases.
+
+These tasks also require children to listen care-fully and attend to subtle sound differences over a large number of trials. Even typically developed children may find this challenging; for children with ADHD, it may be impossible. In order to differentiate CAPD and ADHD, Dawes and Bishop (2009) advocate the use of behavioral measures that tap visual attention. The prediction would be that children with ADHD would have difficulties across modalities, whereas children with CAPD would be impaired only on the audi-tory tests. The more difficult issue to tease apart is whether performance on either measure by chil-dren with ADHD reflects attention skills or is indicative of a central processing disorder. With regard to ASD, perceptual anomalies are frequently reported in both research and clinical settings, though again these are rarely confined to the auditory modality. In addition, the child with ASD is likely to have social deficits that may mimic auditory disorder. For example, not responding to parents calling the child’s name is an early indicator of ASD but may also signal an auditory deficit. Dawes and Bishop (2009) reported that children with ASD are overrepre-sented at assessment centers specializing in CAPD. Research studies that use electrophysio-logical techniques (e.g., ERP) have suggested that the auditory impairments that characterize ASD arise because of a speech-specific, postsensory impairment related to attentional orienting (Ceponiene et al. 2003; Whitehouse and Bishop 2008). Dawes and Bishop (2009) further suggested that such top-down influences on audi-tory processing would require a different treat-ment approach to developing listening skills from the treatments recommended for CAPD. In sum, it is likely that auditory processing problems are one of a number of “collateral” deficits commonly found in across a range of neurodevelopmental disorders (Dawes and Bishop 2009). Thus, assessment in a multi-disciplinary setting will be necessary for documenting auditory deficits and considering these deficits in relation to the child’s overall cognitive, linguistic, and social profile. Where possible, assessment of auditory skills that do not explicitly involve speech-based stimuli is preferable in order to avoid the confounding effects of impaired language development.
+
+### Treatment
+
+Bishop (2011) highlighted the importance of establishing the causal role of auditory processing in other developmental disorders because of the implications for treatment. If auditory difficulties contribute to attention or language difficulties, then it would make sense to train auditory skills with positive downstream effects for language and attention. However, if auditory deficits are associ-ated, but do not play a causal role in disorder, such treatments would not be effective. Several computer-based training packages have been developed, with Fast ForWord (Scientific Learn-ing Corporation) being the most popular and widely used in clinical and education contexts. This program was not specifically designed for CAPD but is based on a theoretical framework in which development language and literacy learning difficulties arise from impairments in rapid auditory temporal processing (Tallal and Piercy 1973). Fast ForWord is comprised of adap-tive computer games that include acoustically modified speech; the degree of modification grad-ually diminishes as the child improves perfor-mance on the language-based tasks. It is most widely used for children diagnosed with SLI or dyslexia; however, rigorous trials of Fast ForWord and similar computer-based intensive auditory training have not yielded clinically significant improvements in language or literacy functioning (Loo et al. 2010; Strong et al. 2011). There is currently a dearth of studies investigat-ing treatment efficacy for children diagnosed with CAPD. For the most part, Dawes and Bishop (2009) report that current clinical practices do not aim to treat the auditory deficit directly, but rather aim to reduce the impact of auditory processing deficits through environmental modification (e.g., sitting the child nearer to the classroom teacher, waiting to have the child’s visual attention before speaking) or by enhancing the auditory signal (e.g., using a directional microphone in the classroom). However, the effect of these modifications on developing auditory skills or improving language and academic outcomes is largely unknown.
+
+### Auditory System
+
+### Definition
+
+The auditory system includes the outer, middle, and inner ears, as well as the central auditory nervous system. The outer ear includes the pinna and the external auditory meatus (ear canal). The tympanic membrane (eardrum) is the boundary between the outer and middle ear. The middle ear is housed in the mastoid portion of the temporal bone and is a completely enclosed cavity that is connected to the naso-pharynx by the Eustachian tube. The middle ear houses the three smallest bones in the body, the malleus, incus, and stapes, also known as the ossicular chain. The inner ear is called the cochlea, which contains the sensory hair cells and auditory nerve fiber endings that convert mechanical energy from the middle ear into elec-trical energy. The VIII cranial nerve, vestibulo-cochlear nerve, brings the auditory information to the central auditory nervous system which consists of the brainstem nuclei (cochlear nuclei, superior olivary complex, lateral lemniscus, inferior colliculus, and medial geniculate body), the primary auditory cortex in the tempo-ral lobe and the association auditory cortices. The entire auditory system codes frequency, intensity, and time which are essential to the perception of sound and therefore speech.
+
+### Auditory Verbal Learning
+
+### Definition
+
+Auditory verbal learning refers to the process of acquiring and retaining new information about the sound patterns and/or meanings of words, sentences, stories, and other nonword sequences, after hearing them read aloud. A person’s ability to learn the underlying sound structures and meanings of words creates the foundation for that person’s ability to ultimately understand speech and use language to communicate with others. One of the core features of ASD is “a delay in, or total lack of, the development of spoken language” (American Psychiatric Association 2000). Thus, characterizing the strat-egies that people develop and use to learn lan-guage during auditory verbal learning tasks could help to illuminate the mechanisms underlying communication skills in autism.
+
+### Historical Background
+
+Research on auditory verbal learning began with the seminal work of Hermann Ebbinghaus, in the late 1800s. Ebbinghaus believed that learning verbal material required the formation of new associations between words. He also posited that the strength of these associations could be intensified with repeated exposure and practice. Thus, he designed a research program to test this hypothesis, using himself as a research subject. He developed lists of “nonsense syllables,” which consisted of consonant-vowel-consonant combinations that have no specific meanings associated with them. For example, DAX and YAT would be considered nonsense syllables, since they are not words in the English language. CATwould not be a nonsense syllable since it has a known meaning. Ebbinghaus attempted to learn his lists of nonsense syllables by slowly reading and repeating the lists to himself. Next, Ebbinghaus tried to recall as many of the sylla-bles as he could. He discovered that his memory for the syllables improved with repeated practice of the material. In addition, he noted that his ability to learn the syllables initially improved rapidly and then more slowly over time, until he learned the material in its entirety. By character-izing these patterns, Ebbinghaus was the first to identify and map out verbal learning curves (patterns of learning over time and with repeti-tion). He similarly identified patterns of forget-ting over time and found that forgetting occurs less quickly, when the material is overlearned (repeatedly practiced, even after achieving per-fect recall of the list). In addition, Ebbinghaus examined serial position effects and discovered that words are easier to learn at the beginning and end of a verbal learning list. Research on auditory verbal learning contin-ued into the twentieth century, heavily influenced by Ebbinghaus’ work and also by behaviorism, with a focus on stimulus–response aspects of lan-guage learning. Then in the 1950s and 1960s there was a shift to studying cognitive “mediators,” which were thought to be conscious mental pro-cesses that can be deployed to improve verbal learning performance. This shift was heavily influenced by verbal mediation theory and cogni-tive psychology, which examined internal cogni-tive processes rather than focusing specifically on observable behaviors. In the late 1960s and 1970s, John Flavell extended findings related to verbal mediation and described verbal learning abilities from a developmental standpoint, proposing that younger children have more trouble learning ver-bal information than older individuals because they have a production deficiency. In other words, younger children fail to spontaneously produce and use strategies to improve their per-formance. It was noted these children often showed significant improvements on auditory verbal learning tasks, once they were directly instructed to use specific strategies. For example, Flavell found that younger children were less likely to verbally repeat words to themselves while learning the words from a list, while older children were more likely to use verbal rehearsal with increasing age, and the spontaneous use of this strategy was associated with improvements on task performance. Flavell’s research initiated a flurry of subse-quent training studies examining whether direct instruction in strategy use improved children’s auditory verbal learning abilities. In other words, researchers took children who were not yet actively using strategies on their own and set out to see whether prompting them to use rehearsal, organization, and elaboration improved verbal learning ability. Overall, they found that the abil-ity to use learning strategies typically develops in broad strokes throughout childhood, adolescence, and early adulthood. For example, there are grad-ual developmental increases in the ability to use semantic strategies and word meaning to aid ver-bal learning, from the preschool years through adolescence. These advancements in semantic strategy use are generally accompanied by related improvements in verbal recall performance. Children often begin using word meaning to facilitate verbal learning during elementary school, and as preadolescents they are more likely to use seman-tic strategies successfully when tasks include words with strong associated meanings, and when there are directions that explicitly instruct them to use these strategies. By adulthood people can use word meaning to facilitate verbal learning, even when there are no explicit directions to do so, and when words are more subtly semantically related to one another. Similarly, verbal rehearsal also changes across development, with younger children rehearsing single words repetitively, while older adolescents rehearse multiple words in clusters. This shift from single-word to multi-word rehearsal is also associated with improved auditory verbal learning performance.
+
+### Current Knowledge
+
+In the late 1960s researchers began examining how children with ASD learn words and more complex verbal information. This interest stemmed from the observation that individuals with ASD could engage in echolalia and use ste-reotyped language without necessarily under-standing the core meaning of the words that they echoed. The ability to learn the sound patterns but not the meaning of words was surprising since typically developing people found it easier to learn meaningful information compared to mean-ingless sets of words or sound strings (Marks and Miller 1964).
+
+Using Word Meaning to Improve Learning: Semantic Strategies
+Hermelin and O’Connor were among the first to examine the relationship between word meaning and auditory verbal learning abilities in ASD. They did so by comparing children with ASD and those without ASD on their ability to learn and immediately recall verbal information with varying semantic relationships. They presented children with meaningless word strings and meaningful sentences. They were asked to recall as much as they could remember, in each condi-tion. Children without autism remembered signif-icantly more sentences than word strings, while children with ASD did not show more efficient learning of meaningful information. Researchers also read children strings of unrelated words and strings of related words from a shared semantic category, such as colors or utensils. Children with ASD were much less likely to group words together from the same category than children without autism. Collectively, these studies sug-gest that children with ASD were less likely to use word meaning to aid auditory verbal learning. They were also more likely to rely on phonolog-ical features or sound patterns of the words rather than word meaning. It is important to note that these early studies primarily involved children who had ASD and intellectual disability. Subsequent research looked at both high- and low-functioning individuals with ASD; although studies yielded mixed findings, they generally support the observation that people with ASD are less likely than those without ASD to use word meaning to improve learning and memory of verbal information.
+
+Using Word Order to Improve Learning: Primacy and Recency Effects
+The location and order of words within a word-learning list can also be used to improve auditory verbal learning skills. Scientists have studied whether individuals remember certain parts of a list more readily than other parts, and whether recalling words from the beginning, middle, or end of a list is associated with better learning and memory overall. Remembering words from the beginning or first portion of a list is referred to as the primacy effect. This pattern of recall is thought to reflect the active use of verbal rehearsal, a strategy that involves repeating words over and over again to facilitate retention. Verbal rehearsal has been shown to improve audi-tory verbal learning in typically developing indi-viduals. Conversely, remembering words from the end of a word list is often referred to as a recency effect, and is thought to reflect a more shallow level of processing that involves simply echoing back the sounds that were most recently heard. Low-functioning individuals with ASD tend to rely more heavily on rote memory abilities and are more likely than people without autism to simply echo back words from the end of a list. In other words they tend to show a stronger recency effect than people without ASD. This suggests that they rely on more simple and less efficient learning strategies than individuals without autism, who are more likely to use verbal rehearsal to aid learning. Individuals who are high-functioning with ASD show a different pat-tern of verbal learning and memory. They have demonstrated typical primacy and recency effects when compared to people without autism. The degree to which individuals with autism group words together, based on order, varies across stud-ies; some research has found typical serial posi-tion effects while other studies have not. Although overall, individuals with autism appear less able to actively deploy learning strategies efficiently to support their verbal learning.
+
+Using Repetition to Improve Learning: Learning Curves and Retention over Time
+To examine auditory verbal learning over time, researchers have used experimental paradigms that involve reading a single list of words over a series of repeated trials. Verbal learning curves are quantified over time to determine how much new information an individual retains with each repe-tition of the verbal material. Some researchers have used the California Verbal Learning Test (CVLT; a standardized measure of verbal learning and memory) to examine the rate of verbal learn-ing in ASD compared to controls. During the CVLT participants hear a single list of nouns read aloud on five consecutive learning trials. After each trial, participants are asked to immedi-ately recall as many words as they remember. The list has a fixed word order and an underlying semantic structure, meaning that each word on the list belongs to one of a few semantic catego-ries, such as fruits or furniture. When compared to people without ASD, adolescents and adults with high-functioning ASD show typical rates of verbal learning on early learning trials and poorer recall on later trials. This suggests less efficient auditory verbal learning over time. In other words, their ability to learn new verbal information over time slows down more quickly over repeated trials in comparison to people without ASD. In addi-tion, individuals with ASD were less likely to cluster words together based on shared semantic categories or the order in which they appeared in the original list. In this case, slower learning was likely attributable to less efficient use of learning strategies over time. To summarize our current knowledge, the research to date suggests some general trends in auditory verbal learning abilities in ASD. First, individuals with ASD are less likely than people without ASD to use word meaning and semantic structure to enhance their learning abilities. Sec-ond, they are also less likely to use other active learning strategies, like verbal rehearsal and serial clustering. Finally, when word lists are read repeatedly, individuals with ASD tend to learn words less efficiently over time. Although these are general trends observed in the research litera-ture, patterns of auditory verbal learning have not been entirely consistent across all studies, and these trends are observed more often in low-functioning individuals than in higher-functioning individuals with ASD.
+
+### Future Directions
+
+There are a number of possible avenues for future research on auditory verbal learning in ASD. First, future research could adopt a developmental perspective, using longitudinal studies that exam-ine auditory verbal learning abilities as people age and develop throughout their lifespan. Our knowl-edge about auditory verbal learning in ASD comes largely from cross-sectional studies, which provide a snapshot of verbal learning abil-ities by capturing performance at a single time point in a person’s life. Larger scale longitudinal studies focusing on the emergence and active use of different types of verbal learning strategies at multiple points within a person’s life would help to identify whether specific patterns of learning are simply delayed in ASD or whether they remain consistently impaired throughout the lifespan. Knowing more about the development and use of learning strategies and auditory verbal learning skills over time could help to shape inter-ventions designed to improve verbal learning and communication in this population. In the same vein, training studies could be conducted to explicitly instruct individuals with ASD to use strategies known to improve auditory verbal learning performance. Such studies could help to evaluate whether explicit instruction on strategy use would improve verbal learning in the short term. In addition, this line of research would also help to determine whether improvements due to instruction could be sustained over time, with-out additional instruction and maintenance. Finally, there has been considerable theorizing about underlying neurobiological mechanisms responsible for impaired auditory verbal learning in ASD. In particular, temporal and frontal lobe regions have been implicated, as well as more distributed problems with connectivity. Most studies investigating auditory verbal learning in ASD compare performance on list-learning tasks in individuals with ASD to patterns of perfor-mance in individuals with known brain lesions. This approach provides a starting point for iden-tifying underlying neural mechanisms. However, future research could extend this research by uti-lizing imaging techniques to identify patterns of brain activation during verbal learning tasks in individuals with ASD, and to specify whether particular regions of the brain are related to less efficient verbal learning in this population.
+
+### Augmentative and Assistive Technology
+
+### Definition
+
+| Assistive technology | A broad range of devices, services, strategies, and practices that address the problems faced by individuals who have disabilities (Cook and Polgar 2008) |
+|---|---|
+| Assistive technology device | “Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” (Assistive Technology Act of 2004) |
+| Assistive technology service | “Any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device” (Assistive Technology Act of 2004) |
+| Augmentative and alternative communication (AAC) | One type of assistive technology that specifically focuses on the strategies, interventions, and supports that assist a person with a disability to communicate |
+
+### Historical Background
+
+In 1988 the Technology-Related Assistance for Individuals with Disabilities Act (1988), called the Tech Act, provided support for activities to help individuals with disabilities to obtain assis-tive devices and services. The Tech Act focused on helping states create systems that would give individuals with disabilities improved access to assistive technology devices (Bausch et al. 2005). In 2004 the Assistive Technology Act, called the AT Act, continued support for the sys-tems established by the earlier legislation. The AT Act also recognized that “there is a continued need to provide information about the availability of assistive technology, advances in improving accessibility and functionality of assistive tech-nology, and appropriate methods to secure and utilize assistive technology. . .” (AT Act 2004). The new law required majority of states’ funding that was to be used specifically for programs focusing on assistive technology reutilization, demonstration, and device loans (AT Act 2004). Both the Individuals with Disabilities Educa-tion Act of 2004 (IDEA) and Rehabilitation Act of 1973 speak to the provision of assistive technol-ogy in school. IDEA states that assistive technol-ogy devices and services must be made available “if required as a part of the child’s special educa-tion, related services or supplementary aids and services” (2004). While IDEA uses the AT Act terminology in its definition of assistive technol-ogy, it also more specifically outlines the respon-sibilities related to application in the educational setting. The Rehabilitation Act of 1973 ensures that students who do not qualify for special edu-cation but require AT are still provided access to those supports and services.
+
+### Current Knowledge
+
+Assistive technology (AT) has been integrated into our work, home, school, and community through programs that focus on identifying, obtaining, and using assistive technology in order to maximize the independence and partici-pation of individuals with disabilities in society (Tech Act 1988). This process of matching the person with a disability, the activity or task, and the assistive technology device is outlined in the definition of assistive technology service found in the AT Act (2004). The types of activities that are part of assistive technology service include eval-uation of AT needs of the person, including in relevant and functional environments; procuring the device; conducting tasks associated with obtaining and maintaining the proper device; coordinating different stakeholders to support the assistive technology; training or technical assis-tance; and expanding access to AT (ATAct 2004). The definition of a person with a disability, according to the Americans with Disabilities Act, is “a person who has a physical or mental impairment that substantially limits one or more major life activities” (ADA n.d.). In order to access the available AT resources, an individual with autism spectrum disorder or other disabilities will need the support of knowledgeable team members who can be actively involved in the AT evaluation and implementation. The team can now move toward the identification of appropriate AT tools, training, and technical assistance neces-sary to increase the person’s abilities to success-fully participate in a range of life activities as independently as possible. The qualifications of the evaluation team mem-bers are not specified in the law, but at a minimum the team should be able to execute the steps of an assistive technology assessment including identi-fying the relevant strengths and challenges of the individual knowledgeable about the range of AT options that are available for consideration (OCALI 2013). AT services are provided by pro-fessionals in a number of different fields, such as speech pathology, occupational therapy, physical therapy, engineering, and special education. The law does not require evaluators to have specific credentials; the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) has developed a certification program so that professionals from related fields can be certified as an Assistive Technology Professional (ATP). ATPs are skilled with evaluating the needs of individuals, matching them to AT, and helping with training in implementation. RESNA has also identified standards of practice in the field of assistive technology which guide the work of ATPs for consistency and fidelity. Consideration of a person’s assistive technol-ogy needs requires an understanding of the user’s abilities and challenges, the context for applica-tion, and relevant experiences with other AT sup-ports and strategies. The World Health Organization refers to the term disability as “reflecting the interaction between features of a person’s body and features of the society in which he or she lives” (WHO). This definition highlights the relationship between a person’s abilities and the performance expectations as opposed to a specific diagnosis. The elements of the assessment of the person’s strengths and difficulties are not prescribed by law. Evaluation teams may assess the person’s vision and hearing abilities, as well as their mobility, cognition, learning, communica-tion, and social skills. To understand the impact of the disability fully, functional contexts must be included in the evaluation. Some other major life activities that could be observed are recreation, daily living, self-care, and working. Activities such as reading, concentrating, standing, lifting, bending, and others (ADA 2011) represent an even broader interpretation of potential applica-tions of assistive technology (Pacer). Selecting assistive technology is a dynamic process of matching the task, the person, and the tool. There are many resources available online and in texts to guide teams through the process of assessing the need for assistive technology, such as the SETT process (Zabala 2005e), the Wiscon-sin Assistive Technology Initiative (WATI 2009a), and OCALI AT Resources (2013). In addition to information about specific AT devices, these documents also outline a sequence of steps for an ATevaluation, such as the one from OCALI (2013) below: 1. What are the specific tasks the person needs to perform? 2. What barriers exist, and what is the impact on the person’s participation in the task? 3. What strategies and tools have been tried, and what were the results? 4. What AT tools or strategies might be useful in overcoming these barriers or challenges?
+
+As part of making that decision, the team should consider the full range of AT options that are available, from the simplest envi-ronmental adaptation to a basic tool to a complex computer-based device. Reed (2009) suggests that teams look at a range of sources to learn about options, including books, catalogs, websites, or actual hardware or software. Here is where it is important to have as part of the team at least one person who has some knowledge about relevant assistive technology (Reed 2009) to help evaluate the findings. Different options of AT to meet dif-ferent needs are presented in the next section. Based on the collected information, what would be the best idea to try next? What is the plan for implementation of the identified AT solu-tions? This is the point in the process where the specific device and services are selected. The clear determination of the target tasks, the assessment of the person’s abilities and challenges in that context, and consideration of prior efforts will prepare the assessment team to make informed decisions and thoughtful recommendations for next steps. Once a decision has been made about what AT to try, a plan for monitoring the trial should be identified. How will training be provided? How and when will the AT be used? What are the indicators of success? What might suggest that the device is not meeting the identified need? Again, the online AT resources are excellent ref-erences for suggestions of questions to ask (WATI 2009b; Zabala 2005d; OCALI 2013). Monitoring the final steps of the process is as important as the other steps in ensuring proper implementation and also documentation of benefits and deficiencies. Even with a good assessment process, it still may be necessary to conduct trials of multiple tools before a solution is identified (Reed 2009). The team may have already created a list of ideas from which to draw their next AT support. Addi-tional trials should follow the same process of planning and documentation until a successful match is made. The evaluation process defined the context of the need and the necessary features of the device. The step that involves a discussion of potential AT solutions requires an awareness of the continuum of options available for the identified need. The sections below are organized according to broad areas of need: sensory; seating, positioning, mobility, and transportation; reading, writing and computer; cognition and learning; and communi-cation. A brief description of the skills or func-tions included in that section is followed by list of examples of AT for those purposes. More general names of different types of supports are used as opposed to naming of specific devices, hardware, software, or materials that would be quickly out-dated. The topic of communication is covered in detail following the other areas. AT options related to vision (e.g., cortical vision, visual acuity) include large-print books, Braille, digital books, screen readers, magnifi-cation aids, and optical aids. AT options related to hearing (e.g., hearing acuity, auditory processing, auditory sensitivity) include hearing aids, speech processors, FM systems, alerting systems, captioning, and noise-cancelling headphones. AT options related to seating, positioning, mobil-ity, and transportation include manual and power wheelchairs, walker, cane, adapted table, stander, seat cushion, adapted chair, positioning wedges, grab bar, wheelchair van, wheelchair lift, and specialized car seat. AT options for reading, writing, and computer interface include audiobook, E-book or elec-tronic book, screen reader, alternate keyboard, on-screen keyboard, keyguard, joystick, alter-nate mouse, stylus, voice commands, speech to text application, word prediction applications, eye gaze technology, electronic switch, adapted pen/pencil, and portable electronic device. AT options for activities of daily living and envi-ronmental control (operation of electronics such as lights, phone) include adaptive switches, adapted utensils, specialized handles and grips, switches, alternate keyboards, com-puters, remote controls, voice command speakers, and portable electronics. AT to support cognition and learning, such as attention, memory, information processing, knowledge representation and organization, problem-solving, language, and learning (Cook and Polgar 2008), prioritizing, plan-ning, organizing, self-monitoring, and working memory (Temple 2013) includes electronic and nonelectronic materials such as timers, watches, alarms, calendars, reminders, audio recorders, schedules, task lists, sticky notes, graphic organizers, and work systems.
+
+Assistive technology that specifically addresses the needs associated with impairments in speech and communication is called augmenta-tive and alternative communication or AAC. Augmentative communication (AAC) tools and interventions are typically used to supplement a person’s existing communication abilities, including any natural speech, rather than replacing it. The purpose of AAC, according to Light, McNaughton, and Caron (2019), is to “(a) enhance language learning, (b) facilitate social interaction, (c) improve literacy skills, (d) increase participation in society, and (e) teach partner interaction strategies” (p. 26). No-tech or unaided communication supports use a person’s own body or the environment with no requirement for equipment. Examples include speaking, pointing, gestures, facial expressions, and manual signing. The strengths of unaided methods are that they do not require preparation or management of materials and they are always available and cannot be lost, broken, or damaged and do not cost anything. When used in a context that has information to support a person’s message, gestures, vocalizations, and facial expressions can be very effective forms of communication. Low-tech communication systems include nonelectronic and paper-based materials. Com-munication boards, communication books, and paper communication displays are all examples of low-tech supports. The benefits of low-tech supports are that they are typically inexpensive, lightweight, portable, and easily customized. Indi-viduals who use high-tech communication sup-ports often have a low-tech version, created by printing a copy of the displays to use in situations when the device is unavailable or impractical. High-tech communication aids are often called “speech-generating devices” or SGDs. Because they are computer-based, high-tech SGDs offer many options for how messages can be organized, displayed, and generated. The type of display used in high-tech devices is called a “dynamic display,” where the message targets displayed on the device will change based on the user’s selec-tion. Most high-tech SGDs allow the user to deter-mine the number of cells, or targets, that are displayed on the screen. Some devices will allow the user to create their own cell size and configu-ration, while others offer a specific set of page layout options. Many devices come with page sets where the display, messages, representations (symbols), and behaviors (response) have already been programmed. By selecting from a set of preprogrammed displays, the person using the device can make necessary edits to individualize their communication support. When using a keyboard display, as the user types, the letters and words are displayed in a message window or screen that is usually above the keyboard. The message is then spoken by the device. When the device speaks what a user has typed, it is using a form of technology called “text to speech,” which refers to the process of converting the text entered by the user into spoken output. Until recently, high-tech dynamic display devices were the least available and most expen-sive type of communication support. With the increase in the use of portable electronics in the general population, the availability of these devices for individuals requiring AAC has also increased. Software applications that support communication have been developed for com-mercially available electronic devices and can easily be added to mobile devices such as smartphones and tablets (e.g., iPhones, iPads, android phones, and tablets). McNaughton and Light (2013) noted positive contributions of these options included “increased awareness and social acceptance of AAC in the mainstream, greater consumer empowerment in accessing AAC solutions. . .” (p. 107). With the rapid development of new applica-tions and changes in operating system features, a list of specific communication apps would not be a very relevant resource for long. Instead, the work on mobile media devices (e.g., tablets, phones) by Caron and Shane (2014) outlines the app features that were most desirable for individ-uals with ASD: purpose; output (speech pro-duced); speech settings; representation (symbols), display (layout, design), and feedback (visual, auditory, tactile); rate enhancement (prediction), access, and motor; and app interface (social). This might be a more useful reference when considering AAC devices.
+
+### Future Directions
+
+In their entry on mobile technology, McNaughton and Light (2013) identify evidence-based prac-tices in the field of AAC that are critical to the implementation of any AAC device: proper assessment of the individual and communicative contexts; device selection and customization based on assessment; focused intervention to increase competency; and training and support of partners. The concept of universal design has the poten-tial to reduce the need to use assistive technology or individual adaptations. Applying the principles of universal design increases accessibility for all and decreases the need for specialized products for individuals.
+
+### Australia and Autism
+
+### Historical Background
+
+Australia has a land area about 80 % the size of the USA, China, Europe, and Canada, and 30 times the size of the UK. The total population of Aus-tralia is 23 million, with most inhabitants living in several large cities, each with a population of between one and four million. There is a federal system of government, as well as six states and two territories, each with its own state legislature and service systems for health, education, com-munity services, and law. Further, each city or municipal area has a local council and responsibility for services that impact on people with disability. There are thus three levels of gov-ernment all with involvement in services of vari-ous kinds, quite apart from a range of private foundations, organizations, and corporations which also provide service. The history of autism in Australia follows that in the USA and the UK, beginning with the pioneering work of Kanner in the USA (Kanner 1943). However, specific interest in autism within Australia, apart from individual clinical work, did not emerge until the 1960s. At this time, signifi-cant research findings were beginning to emerge from studies in the UK and USA, and trends in child and adolescent psychology and psychiatry in Australia largely followed developments in these countries. Initially most research and clini-cal interest was in children in early school year (Bettelheim 1967; DeMeyer et al. 1972; Bartak et al. 1975), usually male, with full scale IQ under 70, with quite severe features of autism and with parents who appeared emotionally stressed. Many clinical programs were focused on the involve-ment of parents in the development of their child’s autism. This was partly because autism was still embedded in psychiatry, and child psychiatric programs in Australia had tended to follow a psychodynamic orientation in the absence of much in the way of objective research on causes of behavioral problems generally. Input from other health professionals from the 1950s to the 1980s would often be limited to neurological opinion to exclude underlying medical condi-tions. The work of Bettelheim (1967) more spe-cifically in the area of autism within a psychodynamic framework also influenced pro-grams in Australia at this time. However, from the 1960s, new approaches, taking into account behavioral criteria for autistic disorder and intel-lectual ability, were beginning in Australia, fol-lowing developments overseas, including the work of Rutter and Schopler (1987), Rimland (1964), DeMeyer et al. (1972), and Ornitz and Ritvo (1968) in the USA and Bartak et al. (1975), Hermelin and O’Connor (1970), and Frith (1989) in the UK. From the 1980s, in line with other changes in the way services were provided to children (see below), Australia has adopted objective diagnostic criteria as they have been developed and is looking with interest at the new Diagnostic and Statistical Manual-5 criteria for autism from the American Psychiatric Association (2013).
+
+### Diagnosis
+
+As mentioned above, diagnosis of autism was done predominantly by psychologists and psychi-atrists in Australia until the 1980s. The service context is important here in thinking about the changes that have occurred over time and the current situation. In Australia, the federal govern-ment funds health professionals, including doc-tors, allied health professionals, and psychologists through Medicare funding, to work in private health-care settings which are run as businesses. In 2008, the federal government launched a funding program called “Helping Children with Autism” (HCWA) that provided funding for diag-nosis and assessment of children suspected as having autism, using Medicare billing. The HCWA funding also included intervention funding (see below). The states and territories provide funding for public health-care facilities, including the salaries of health-care professionals. Each state and territory can take and has taken a different, and often changing, approach to the service type and location that they will fund for diagnosis and assessment of developmental prob-lems, including autism. Some diagnostic services are based in hospitals and others in community settings. Consistent features across states and ter-ritories have been (1) the emergence of multi-disciplinary teams based in publicly funded services, from the 1960s but not widespread until the 1980s for the diagnosis and assessment of children with developmental problems, includ-ing autism, usually including a pediatrician (less commonly a child psychiatrist), speech patholo-gist, and psychologist, but with varying composi-tion between states and territories and between regions within states and territories and no given per capita rationale for geographic location; (2) increasing numbers of pediatricians, speech pathologists, and psychologists working in pri-vate settings, in isolation but providing parts of the assessment required for a diagnosis of autism; and (3) greater, but not consistent between services or clinicians, use of standardized assess-ment instruments (e.g., Autism Diagnostic Obser-vation Schedule (ADOS) (Lord et al. 2001), Ehlers and Gillberg’s High Functioning Autism Syndrome Screening Questionnaire (ASSQ) (1999), the Autism Diagnostic Interview-Revised (ADI-R) (Rutter et al. 2003), or the Diagnostic Interview for Social and Communication Disor-ders (DISCO) (Wing et al. 2002)). In Western Australia, an active group of clinicians has devel-oped a standard assessment model which has formed the basis of a multidisciplinary diagnos-tic and assessment procedure. This procedure has not yet been taken up throughout Australia. Con-sistent with other high-income countries, Austra-lia has seen a trend toward earlier diagnosis of autism, such that it is now common to see chil-dren as young as 2 years of age, and sometimes less than two, presenting with concerns. Children with relatively good language skills are some-times still not being seen by diagnostic teams until 8–12 years of age. In parallel with other high-income countries, milder cases are also being diagnosed in Australia. The term autism spectrum disorder had high uptake in Australia by the early 2000s. That con-ceptualization combined with the use of DSM-IV’s diagnostic category pervasive devel-opmental disorder-not otherwise specified (PDD-NOS) and the acceptance of PDD-NOS as sufficient for service entry saw an increasing num-ber of children with fewer diagnostic features and of lower severity level being labeled.
+
+### Early Intervention
+
+Australia has followed the USA, Canada, and the UK in embracing early intervention for children with developmental disorders, including autism. Publicly funded early intervention services devel-oped in Australia during the 1960s. Autism asso-ciations also began in Australia in the 1960s, and in that role were some of the earliest “early inter-vention” providers. Traditionally state govern-ments have provided early intervention for children with substantial developmental prob-lems, based on functional ability and needs rather than diagnosis. The HCWA funding of 2008 transformed the early intervention landscape in Australia, with families receiving some dedicated federal funding for early intervention services and with one early intervention-enriched child care facility being established in every Australian state. The HCWA funding package provides funding for early intervention for children from diagnosis up to their seventh birthday (however, they must be registered by their sixth birthday), with five being the age of school entry for most children in Australia. An essential and increasing feature of these programs has been to provide support and education for parents so that they can supplement the program activities with struc-tured activities at home.
+
+### Education
+
+In 1984, the State of Victoria conducted a review of educational services for disabled children. Prior to this, Victoria and other Australian states had a long history of provision of specialized educa-tional settings for children with various disabil-ities. Some special schools catered for children with IQ under 70, others for children with sensory or motor difficulties. Schools for children with severe intellectual disability were run by the State Health department as were a number of large long-stay residential institutions, some of which had as many as 900 residents many of whom had been there since early childhood for periods of many years. Children with autism had often been thought to be ineducable and tended to end up in small Health Department schools or the larger residential training centers. The review resulted in radical findings and recommended total inclusion in normal schools for all children with a disability. The small schools for children with severe disability were to be transferred to the State Education Department, and it was expected that all specialist schools would be gradually phased out and closed as all children with a disabil-ity would eventually be enrolled in local com-munity public or private schools providing general educational facilities. Where a school had more than six children with special needs, the State Education Department would provide resources to employ a special education teacher and classroom aides. Similar changes have occurred elsewhere in Australia. However, in many regular schools, aides have often been left to work on their own with children with a disabil-ity with insufficient specialist guidance. In addi-tion, closure of special schools has not continued. As a result, while many children with autism go to regular schools, a significant number continue to attend specialist schools which were originally set up for children with intellectual disability and have not been geared to the specific needs of children with autism. Outcomes for children with autism in all of these schools have tended to depend upon the quality of individual teachers and in regular schools, upon the degree of support of school principals. In addition, starting in NSW and Victoria in the 1970s, special schools for children with autism were set up with financial support by parents and private charitable founda-tions. This followed a similar pattern to what had occurred in the USA, UK, and other parts of the world. In Australia, State Educational Authorities have come to provide some degree of financial and administrative support to such schools in most states.
+
+### Adult Years
+
+Over time state autism associations and service providers have recognized at least to some extent that children do not grow out of autism but rather grow with it and become adults with autism. One consequence has been the develop-ment of social skills programs that are relevant to the development of both casual and more permanent and intimate social relationships. Some of these include sexual and other health topics as well as the development of basic inter-personal communication skills. As an example, one very successful program developed in Vic-toria was a “Train the Trainer” program. This was an established course already taught at a technical and further education college which qualified people to become adult education trainers. It was modified to focus specifically on autism. Successful graduates were trained to be public speakers and trainers in the field of autism and could run single sessions or short courses for members of the general public to learn about autism. Twenty adults with autistic disorder were recruited to take the course. Much of the course involved group project activity as well as extensive class discussion. To some degree of surprise amongst both staff and the class members themselves, participants enjoyed the group activities, and ultimately, 17 of the 20 completed the course and obtained graduate certificates as trainers.
+
+### Autism Associations
+
+All states in Australia have autism support asso-ciations. These were mostly set up by parents of children with autism when there were few facili-ties and little governmental support, beginning in the 1960s. In most states, the association has at least one specialist school or class for children with autism and also provides services for chil-dren and adults with autism as well as provides information for members of the public, advocacy for the autism community, and parental support services.
+
+### Legal Issues, Mandates for Service
+
+While there is no legislation specifically directed to people with autism, Australia has for many years had disability relevant legislation federally as well as in all states and territories. In general, most of this was enacted from 1993 following the United Nations Declaration on the Rights of Dis-abled Persons. In general, legislation either makes discrimination illegal or makes legal provision for supply of services to people with disability. In 2013, the Federal Government announced a National Disability Insurance Scheme (NDIS) to be developed in cooperation with state govern-ments, to provide financial support to people with disability. This is being modeled on the fed-eral scheme for financial support of people with autism and insurance schemes for those left with a disability following an accident.
+
+### Overview of Current Treatments and Centers
+
+Today, each state and territory has their own sys-tems for assessment and diagnosis of autism. In some states, these systems still reside in mental health services, while in others, they are embedded in child health or disability services. Diagnostic practices within these services vary within and between states. A parallel private system for diag-nosis and assessment, as described above, con-tinues to operate, and assessment procedures vary between individual clinicians. In response to a need for quality and consistency, as well as recognition of the need for quality and consistency for other service providers, standards and a scheme for cer-tification have been developed. In this scheme schools, clinics and individual practitioners may become certified as skilled practitioners or service providers in the field of autism. This system is similar to the British accreditation scheme for schools and centers in the UK but includes certifi-cation of individual practitioners and services for adults as well as of children’s services, as in the UK. The Australian system was developed through the local state autism association in Victoria but is supported by the federal peak body for autism in Australia, the Australian Advisory Board on Autism Spectrum Disorders. Early intervention services continue to be offered by state and federal governments and often operate as parallel services. Many autism associations also provide early intervention ser-vices for children and their parents/carers and educational services, either on a fee for service basis or supported by federal or state funding. This has been identified as a problem by gov-ernment, professionals, and consumers, and it is hoped that the new National Disability Insurance Scheme will streamline and improve coordination of care for early intervention. The issue of inclusion continues. In some countries other than Australia (e.g., Britain), there are schools that cater specifically for chil-dren with autism and some of these extend to full secondary education. Children attending such schools might then have 12 years of school edu-cation with only others with autism as fellow students. In Australia, there are a number of spe-cial schools for children with autism. However, these are generally at primary level. Few children with autism would stay in an exclusively autism setting to school leaving age of 17–18. Inclusion in regular schools has generally been actively promoted in Australia. However, the issue remains as to which setting is more effective for children with autism and few controlled studies have been carried out. Those that have been car-ried out, including the early studies (Bartak and Rutter 1973), have shown clear support for struc-tured educational methods whatever the overall setting. Awareness and consideration of the needs of adults with autism continues to develop gradually in Australia. This has been referred to already in connection with social skills programs. However, it has become apparent that a much wider range of services than those provided for children is nec-essary for adults. These will include work prepa-ration and further education, health education and services, counseling and psychiatric services, aged care, housing and independent living options, leisure and recreational training, trans-port options and training, and forensic and judicial training and orientation.
+
+### Social Justice and Forensic Issues
+
+Although there are few studies either in Australia or elsewhere (Bartak 2011; Cashin and Newman 2009; Newman and Ghaziuddin 2008; Mouridsen 2012), it is apparent that a number of adults with autism may be charged with a variety of offenses. In many instances, the offense will have occurred inadvertently and essentially through a lack of comprehension both on the part of the person with autism and through misunderstanding of autistic behavior by police and judicial staff. While the limited evidence suggests that people with autism spectrum disorders are not more likely to offend than others, they are overrepre-sented in the justice system. In part this may be owing to failure by family members and staff of community agencies (such as schools or medical facilities) to recognize autism in the respective individual. He or she may then inadvertently break the law for one or other of the above rea-sons. Provision in this area requires better training of police and judicial staff to increase their under-standing of autism, and this is starting to occur in Australia through joint seminars and other train-ing programs with staff from autism associations, university departments, and members of police and justice departments.
+
+### Overview of Research Directions
+
+Until recently, Australia had no systems in place or funding models to connect autism researchers beyond informal email networks. Over the last 5 years, the Australasian Society for Autism Research (ASfAR) has been established and now has over 180 members. This year the federal gov-ernment funded an application for the formation of a Cooperative Research Center (CRC) for liv-ing with autism spectrum disorder. The federal government will provide over $30 million for 8 years, with additional cash and in-kind contri-butions from participants and partners exceeding $60 million. The CRC will support an “across the life-span” program of research. In parallel with other high-income countries, Australian scientists, researchers, and professionals with important skill sets for research in autism (e.g., geneticists, infor-mation technology experts, bioengineers, ethicists, and lawyers) have been forming transdisciplinary and intersectoral partnerships with autism experts to advance our knowledge of autism in a way that should lead to improved care and outcomes for those affected. Many universities have acknowledged the importance of autism and related disorders by establishing Chairs in autism and developmental medicine, or similar, and Research Institutes have developed relevant research group hubs. Increas-ingly, autism associations and the Australian autism peak body are linking directly with researchers.
+
+### Australian Scale for Asperger’s Syndrome
+
+### Description
+
+The Australian Scale for Asperger’s Syndrome (ASAS) is a rating scale that aims to assist in the identification of children likely to be at risk of the condition. The scale is based on formal diagnostic criteria, research literature on associated conditions and features, and extensive clinical experience of the authors (Garnett and Attwood 1998). While acknowledging the core sets of criteria developed by organizations, viz., American Psychiatric Asso-ciation (APA) and the World Health Organization (DSM-IVand ICD-10, respectively), they adopted the clinically derived diagnostic criteria of Gillberg and Gillberg. Attwood viewed these as “clear, con-cise and comprehensive” (Attwood 1998, p. 23). The ASAS has not been updated to align with the Diagnostic and Statistical Manual of Mental Dis-orders 5th ed. (DSM-5) (APA 2013) in which Asperger’s disorder has been subsumed under the umbrella diagnosis autism spectrum disorder (ASD). The rating scale is designed to be completed by parents, teachers, or other professionals who know the child. It is comprised of six sections, A–F, and covers behaviors and abilities consistent with a primary-school-age child with the former diagnosis of Asperger’s syndrome. These include social and emotional issues, communication skills, cognitive skills, specific interests, move-ment skills, and a range of other characteristics such as sensory sensitivities, age of language development, and facial tics or twitches. The scale consists of 24 questions, each with an example of the behavior or skill being deter-mined. Responses are scored on a Likert scale from 0 to 6, with 0 indicating rarely and 6 fre-quently. Within this scale, 0 is deemed the usual level expected of a child of that age. The final section (F) consists of a further 10 fea-tures or behaviors which the respondent com-pletes as appropriate by ticking the box. While no specific cutoff is noted, the authors suggest that when the majority of the questions are answered in the affirmative with scores between 2 and 6, a referral for full diagnostic assessment may be indicated. High scores do not, by defini-tion, imply the condition. Full clinical assessment, if this were to be undertaken, would enable further examination of the six core areas rated in the scale. The authors revised the scale for use with chil-dren and adolescents aged 5–18 years (ASAS-R, unpublished Ph.D. thesis, 2007). They advised general adherence to the interpretation of scores as per the original measure. No psychometric data are available at this time. Further work has focused on developing a measure that provides an autism symptomatology profile that in turn may be useful in clinical settings for targeting and measuring intervention impact (Garnett et al. 2013).
+
+### Historical Background
+
+The ASAS was originally developed by Garnett as part of a master’s thesis in 1993. The scale was further developed by Garnett and Attwood and presented at a conference in Australia in 1998. Only one other scale existed specific to the higher functioning end of the spectrum, viz., the Autism Spectrum Screening Questionnaire (ASSQ) developed by Ehlers and Gillberg in Sweden in 1993. Owing to limited knowledge about Asperger’s syndrome among professionals at this time, coupled with the sometimes subtle presentation of features, many children were not being identi-fied as warranting referral to specialist assessment services. Developing screening measures was one way to assist in the identification of possible fea-tures and abilities consistent with the condition in order to make appropriate onward referrals. While screening measures, such as the ASAS, were overinclusive, they could facilitate the process whereby possible cases were not missed. In the first instance, the ASAS was developed for use with primary school children. Garnett and Attwood (2006) revised the original scale and adapted it for use with 5- to 18-year-olds (ASAS-R). The ASAS-R was effectively a new measure of core dimensions of Asperger’s syn-drome. Garnett was especially interested in the association of Asperger/autism symptomatology (AAS) with the psychological health of children and adolescents who had an autism spectrum con-dition (Garnett 2007). She also sought to evaluate the association between family and peer relation-ships with psychological health of this group and the level of AAS in those with a diagnosis. Garnett conducted a validation study, the results of which were presented in an unpublished Ph.D. in 2007. The ASAS has been translated into German, and this version has been validated on a German sample of 51 children (Melfsen et al. 2005). It has been used to examine sex differences in comorbidity and clinical presentation in a Pol-ish sample of adolescents (Rynkiewicz and Lucka 2018).
+
+### Psychometric Data
+
+Limited data exist on the psychometric properties of the original measure (Thabtah and Peebles 2019). Table 1 gives the areas evaluated by the ASAS.
+
+| Behavior/Skill Areas | Other Characteristics |
+|---|---|
+| Social and emotional abilities | Sensory |
+| Communication skills | Flapping/rocking |
+| Cognitive skills | High pain threshold |
+| Specific interests | Delayed speech |
+| Movement skills | Unusual facial expressions/tics |
+
+In the original study (Garnett, unpublished master’s thesis, 1993), ASAS ratings were pro-vided for 60 children and adolescents (3–19 years). Each group consisted of 20 children: (1) diagnosed with AS, (2) clinical group with mixed diagnosis, and (3) typically developing controls. In addition, participants were assessed for level of receptive language. Multivariate analysis of covariance (MANCOVA) was then conducted for each area score by diagnosis with the receptive language score as the covariate. The nonclinical and AS groups were found to be statistically significantly different in each area to <0.0001. Discriminant function analysis revealed that the ASAS accurately predicted membership of the groups: 90% for AS, 65% for the mixed clin-ical group, and 100% for the control group. No further data were available on test-retest reliability, internal consistency, or discriminant validity of the scale. Small sample sizes and no formal testing as a screening instrument were raised as weaknesses in the scale. The ASAS was translated into German, and the scale was validated in a study by Melfsen et al. (2005). Mothers of children who were inpa-tients at a local psychiatric hospital were asked to participate. Three groups of children were rated on the ASAS (German version), viz., AS group (18), referred for assessment but not diagnosed (18), and a group with mixed psychi-atric conditions (15). Melfsen et al. (2005) report ANOVA results which indicate that the scale successfully differentiated between the three groups. Further stepwise discriminant analysis indicated that group membership was accurately predicted (60.78%). On the basis of these findings, the authors concluded that the ASAS was a useful screening instrument for children with Asperger’s syndrome. The authors have conducted reliability and validity studies on the most recent version of the ASAS, but these are not yet available. Further-more, these data effectively relate to a different measure with a different purpose. The proposed revised measure aimed to assess five dimensions of AS to provide information on severity in each dimension and would therefore be helpful to assist in guiding treatment postdiagnosis (Garnett, per-sonal communication, 2011). Since the initial development of the ASAS, there has been a significant increase in screening and diagnostic tools. Garnett et al. (2013) focused on developing a tool that would provide a profile of individual symptomatology of ASD, that is, The Australian Scale for Autism Spectrum Con-ditions (ASASC). The authors conducted prelim-inary psychometric evaluation of the measure and confirmed that the 5-subscale measure mapped reasonably well onto to the two domains of ASD in the DSM-5. While the measure did not aim to serve as a screening tool, the authors reported positive indications that the ASASC may have benefits of identifying autism in addition to the core purpose of (i) identifying an autism profile, including strengths and difficulties to target in intervention, and (ii) providing indicators of change during and following intervention. The authors suggest further replication and validation studies.
+
+### Clinical Uses
+
+As per the current range of screening measures for children, adolescents, and adults, the ASAS con-tinues to serve the clinical purpose of identifying those children and adolescents who are most at risk of having an autism spectrum condition. It is not evident from the authors whether the ASAS has been replaced by the ASASC. Not unlike diagnostic instruments, screening instruments may not identify those who appear to have more subtle difficulties and differences, such as girls, and those of very significant cognitive abilities. In addition, perhaps in a high-risk family, where others may be affected more significantly, the identified child’s features or behaviors are not registered as severe, hence not deemed necessary to assess further. While the ASAS was one of the earliest attempts at screening for Asperger’s syndrome in children, an increasing range of screening tools is now available to identify possible ASD. These cover various age ranges, and while some, like the ASAS, may be completed by laypersons, others are clinician-rated scales. Nonetheless, in clinical practice, these are not infrequently employed alongside other measures, hence pro-viding a wealth of information from a range of sources, that is, clinicians, parents, and teachers. With the shift to ASD as the umbrella diagnostic category, there has been an increase in tools that evaluate autistic profiles such as females versus males (e.g., GQ-ASQ).
+* Autism Spectrum Quotient (AQ-child)
+* Checklist for Autism in Toddlers (18–24 months)
+* Child Behavior Checklist (36–71 months)
+* Childhood Autism Spectrum Test (4–11 years)
+* Developmental Behavior Checklist – Early Screen (20–51 months)
+* Gilliam Autism Rating Scale Third Edition (36–71 months)
+* Modified Checklist for Autism in Toddlers (17–48 months)
+* Screening Tool for Autism in Toddlers (24–35 months)
+* Social Communication Questionnaire (48 months; mental age > 24 months)
+While a small validation study in Germany (Melfsen et al. 2005) has confirmed the ASAS’s ability to differentiate between three clinical groups, viz., children with a known diagnosis of AS, children referred for suspected AS, and those referred for other psychiatric conditions, little cur-rent information is available regarding the scale’s current usefulness as a screening measure or how it compares with other screening measures. Fur-thermore, lack of clear cutoff scores or indication of the meaning of a particular score renders the instrument difficult to interpret in its current form. Since the scale does not require training or qual-ification and could hence be employed by clini-cians and laypersons alike, the lack of clarity about screening scores and their meaning contrib-utes to the difficulties with interpretation. None-theless, if employed as a simple guide prior to discussion about full screening and assessment, the brief, structured scale facilitates an initial eval-uation of the child’s behavior and presentation within clear areas consistent with the autism spectrum. The ASAS has undergone significant revi-sions, and it would appear that the purpose of the various versions is necessarily different. The ASAS has not been replaced by the ASAS-R, and the former still serves as a screening instrument (Garnett, personal communication, 2011). Garnett has suggested the potential value of the ASAS-R in providing directions for intervention. When used in conjunction with additional data regarding family cohesion and peer victimization, this may assist in selecting areas for treatment. However, she notes the need for further research to establish the tool’s sensitivity to clinical change. The ASASC appears to be fulfill this objective.
+
+### Autism
+
+### Definition
+
+The term “autism” (or autistic) has had several uses in psychiatry. Originally introduced by Bleuler to describe self-centered thinking in schizophrenia, he modified the term from the Greek word for self. In the 1930s, the first child psychiatrist, Leo Kanner, became aware of a group of children who had unusual patterns of social engagement and learning. He published his first 11 cases in 1943 using the term “early infantile autism” to emphasize the apparent con-genital lack of social engagement which he believed to be one of the two cardinal features of the disorder (the other being insistence on same-ness/resistance to change). Although children with features suggestive of autism had been described for centuries (likely including some feral children like Victor the Wild Boy in France), Kanner was the first to describe the syndrome in detail. Interestingly, independent of Kanner’s work, the Austrian medical student Hans Asperger also used the term in his description of a similar condition in highly verbal but socially isolated and eccentric boys. Although he initially emphasized the unique aspects of the condition, Kanner’s use of the term also suggested a link to schizophrenia given Bleuler’s earlier use of the term, and indeed until 1980 autism was not recognized as an official diagnosis and children with what today would be said to have autism were instead thought to exhibit a form of childhood schizophrenia. By the late 1970s, this state of affairs changes with rec-ognition of the uniqueness of autism (based on clinical features, onset, family history, neurobio-logical, and genetic findings) led to its explicit recognition as a category of disorder distinct from schizophrenia. As time has gone on, the condition now known as Autism Spectrum Disorder has evolved in terms of the stringency of the specific diagnostic concept. At the same time a growing body of both behavioral and genetic work suggests that a broader spectrum of the condition clearly exists likely paralleling the awareness of the diverse number of genes that might contribute to the path-ogenesis of the condition. As work on the social neuroscience of autism has increased, the insight of Kanner in using this term to characterize the condition is increasingly appreciated.
+
+### Autism Acceptance and Mental Health
+
+### Definition
+
+Acceptance, appreciation, and acknowledgement of autism as part of a person, both in terms of self-acceptance and how accepting other people are. Perceiving a lack of acceptance could relate to poorer mental health for autistic people.
+
+### Historical Background
+
+Historically, the narratives around autism often focus on deficits, perhaps stemming from its first conception where Kanner (1943) described “autistic disturbances” and autistic behaviors are often pathologized as not “normal” (Milton and Bracher 2013). For many years, autism research has been dominated by biological studies (e.g., genetic and neuroscientific research) and treat-ment or intervention studies (Pellicano et al. 2014) which likely proliferates the narrative that autism is something which should be cured rather than accepted. In more recent years, the ethics behind such autism research has been questioned (Pellicano and Stears 2011), with growing acknowledgment of the need for a shift in the narrative (Gillespie-Lynch et al. 2017) as well as increased participatory research whereby autistic people are meaningfully included in autism research (Fletcher-Watson et al. 2019). The shift in narrative and the idea of accepting autism as an integral part of a person is related to the concept of neurodiversity, a term first credited to Judy Singer (1999). The neurodiversity move-ment celebrates diverse autistic thinking, views autism as part of identity, and is opposed to autism “cures” (Kapp et al. 2013) while still acknowledg-ing the difficulties autistic people face and not minimizing disability (Den Houting 2019). This movement relates to the social model of disability (Shakespeare 2006) which proposes that disabil-ity can be the result of incompatibility with the environment and society. For example, one could argue that society’s lack of acceptance of autism could be a significant factor in the underemploy-ment of autistic people rather than autistic charac-teristics preventing employment. Generally, these approaches highlight that autism is not perceived to be currently accepted within society. This poor acceptance could relate to the mental health of autistic people. Autism itself is not a mental health condition, but autistic individuals experience high rates of mental health difficulties, for example, depression (Stewart et al. 2006), anxiety (Gillott and Standen 2007), social anxiety (Maddox and White 2015), and suicidal behavior and ideation (Cassidy et al. 2014). Prevalence estimates vary widely, for example, between 28% and 86% of autistic people have been suggested to experience diagnosable mental health conditions (Howlin and Magiati 2017). Despite this variability, it is asserted that autistic people experience mental health difficulties at a higher rate than non-autistic people (Lai et al. 2019). These mental health difficulties make everyday life more challenging for autistic people and likely contribute to poorer quality of life (Robertson 2009). The reasons why mental health conditions are highly prevalent in autism are not well understood and may depend on the specific mental health condition. Further, it is unlikely that the high prevalence is caused by one single factor, but a myriad of both internal and external contributing factors which enhance the risk of poor mental health. Internal factors might include genetic predispositions or certain cognitive biases. For example, in anxiety in autism, a mode of thinking known as “intolerance of uncertainty” has been found to link to increasing anxiety (Boulter et al. 2014). External factors might include aspects of the world dependent on other people, such as lack of social support, or the sensory environment – for example, hypersensitivity to the sensory environ-ment has been noted to play a role in heightening anxiety in autism (Green and Ben-Sasson 2010). More recently, the role of autism acceptance has been examined as an external contributing factor to poor mental health in autism.
+
+### Current Knowledge
+
+Autistic adults tend to perceive that within society, they are not accepted for being autistic, and a lack of perceived acceptance from others relates to higher symptoms of depression and stress (Cage et al. 2018). Robertson et al. (2018) found that autistic adults experiencing high rates of anxiety discussed how acceptance from others helped mitigate some of their anxiety symptoms, but they continued to fear the judgment of others. Participants in Cage et al.’s (2018) study described how they were often misunderstood or even completely dismissed by others and they used tactics to hide their autistic characteristics and therefore “pass” within society unnoticed as an autistic person. These tactics have been con-ceptualized as “camouflaging” (Hull et al. 2017), and the use of camouflaging has been argued as a means of protecting the self against nonacceptance and discrimination from others (Cage and Troxell-Whitman 2019). Further, high rates of camouflaging have been found to relate to poorer mental health (Hull et al. 2019). Trying to fit into a predominantly non-autistic and non-accepting society is thus a mentally exhausting endeavor. Autism acceptance can also be measured by examining antonymous concepts such as autism-related stigma. Stigma is the attachment of negative attitudes and stereotypes toward a group of people, and the discreditation and discrimination of the group (Goffman 1990), in this case autistic people. Botha and Frost (2018) argue that autistic people are a stigmatized minority group and are subject to “minority stress” – in other words, the stress asso-ciated with being labeled as part of a discriminated minority. Botha and Frost (2018) supported this minority stress model by finding that experiences of discrimination, concealment of autistic status, and internalized stigma related to poorer mental health in a sample of autistic adults. Together, this research suggests that perceived lack of acceptance in the form of stigma can have a negative relation-ship with mental health. Other research has examined the self-acceptance of autism, which can also be thought of in terms of autistic identity. The terminology used to describe autism can be classified as either person-first (person with autism) or identity-first (autistic person). Kenny et al. (2016) found in a sample of British autistic participants that the majority preferred identity-first terminology. The participants described how person-first terminol-ogy positioned autism as something separate to the self, when in fact autism colors every element of how the individual processes the world and was therefore an inseparable part of the person. Similarly, Kapp et al. (2013) found that stronger identification with an autistic identity was associ-ated with viewing autism more positively and as something that should not be “cured.” Further, Kapp et al. (2013) noted that preference for identity-first language did not mean that these participants lessened the difficulties associated with autism. It is important to bear in mind that acceptance does not mean ignoring or reducing the everyday difficulties associated with autism, but rather to understand and acknowledge these, alongside autistic strengths (Den Houting 2019; Kapp et al. 2013). Research has attempted to examine the links between self-acceptance, in terms of identifying with an autistic identity, and mental health. Cooper et al. (2017) measured autistic social iden-tity (i.e., identifying as part of the autistic com-munity) and mental health. They found that autistic identification could protect against anxi-ety and depression through promoting higher per-sonal self-esteem (the value placed on one’s self) and collective self-esteem (the value placed on autistic people as a group). In this way, identifying with the autistic community could protect against mental health problems through taking pride in being part of this community and potentially drawing on support from other autistic people. In a review and synthesis of qualitative literature, Kim (2019) noted links between positive autistic self-identity and greater self-determination (an attitude toward being in control of one’s own life), which they suggest could link to better quality of life and ability to manage stress. Although the above research suggests that accep-tance of being autistic links to better mental health outcomes, it can be challenging to achieve self-acceptance, especially considering the dis-crimination and stigma experienced by autistic people.
+
+As such, researchers have not only examined autistic people’s perceptions of acceptance but have tried to survey non-autistic people’s attitudes toward autism, to measure the levels of accep-tance within society. Knowledge about autism in Western populations is thought to be relatively good (Tipton and Blacher 2014) although some misunderstandings and misconceptions can still occur (Dillenburger et al. 2015) as well as many believing myths about autism (John et al. 2018). Autism-related stigma has also been measured, for example, as “openness” toward autism (Gardiner and Iarocci 2014) or the desire for social distance from autistic people (Gillespie-Lynch et al. 2015), with these studies finding that less stigma is associated with prior experience and contact with autistic people themselves. Notably, non-autistic people can falsely believe that they are more helpful toward autistic people than they actually are (Heasman and Gillespie 2019), suggesting that non-autistic people likely attempt to provide socially desirable responses that pre-sent themselves in a positive light – thus survey measures of stigma are considered with caution. Experimental research has therefore looked at non-autistic people’s acceptance of autism through inventive means which may be less affected by social desirability than survey methods. For example, a growing body of research looks at the “first impressions” of autistic people. First impressions are the rapid judgments made about a person on first interacting with them (Ambady et al. 2000). One approach to test these first impressions is to ask observers to rate people they view in brief video clips. In one of Sasson et al.’s (2017) experiments, it was unknown to the observers that half of the people in the videos were autistic. Sasson et al. (2017) found that more negative judgments of the autistic people were formed, with autistic people rated as more awk-ward, less likeable, and attractive than non-autistic people, and there was less desire to hang out, talk to, or make friends with the autistic individuals. Interestingly, Sasson and Morrison (2019) found that labeling the video participants as autistic helped to improve first impressions. Further, Morrison et al. (2019) found that personal characteristics of the observers, such as pre-existing stigmatizing attitudes and knowledge about autism, could better explain poor first impressions than the characteristics of the autistic people in the videos. Together, these findings suggest that non-autistic people have negative biases against autism, but with intervention non-autistic people could overcome their difficulties with accepting autistic people.
+
+### Future Directions
+
+More research is needed to find means of improv-ing autism acceptance in the non-autistic popula-tion. Interventions have been trialled within educational establishments – such as Gillespie-Lynch et al.’s (2015) online training for university students. Here, the training taught students about a range of different aspects including autistic strengths and difficulties, autism as a spectrum condition, etiology, and neurodiversity. After com-pleting the training, there were improvements in knowledge and reductions in stigma toward autism. These findings are thus promising, with subsequent replications in non-Western countries such as Lebanon (Obeid et al. 2015) and Japan (Someki et al. 2018). Other anti-stigma interven-tions with school-aged girls have also shown prom-ise in teaching girls about autism, with associated reductions in stigma (Ranson and Byrne 2014). Often research finds that girls and women tend to be more open toward autism (e.g., Cage et al. 2019; Nevill and White 2011); thus future research needs to understand why this is the case and what can be done to improve male’s attitudes toward autism. Further, more research is needed on interventions outside of educational settings as well as longitu-dinal studies to test whether the effects of interven-tions persist beyond the short term. Additionally, the difficulties in autistic to non-autistic interactions can be thought of in terms of a “double empathy problem,” which can be described as interactional clashing between autistic and non-autistic people, with neither group understanding one another well (Milton et al. 2018). Mitchell et al. (2019) argue that the double empathy problem should be considered in tandem with the mental health difficulties experi-enced by autistic people. It seems that autistic people expend significant effort to understand and fit in to the predominantly non-autistic world, and this can be mentally and physically exhausting (Cage and Troxell-Whitman 2019). Achieving acceptance may involve reducing the “gap” between autistic and non-autistic perspec-tives and non-autistics putting in equal effort to understand autistic perspectives. Research on the double empathy problem is in its infancy but shows promise (Milton et al. 2018). It should also be carefully considered how current practices in education, the media, healthcare and research might be perpetuating stigma. For example, Bottema-Beutel et al. (2018) discuss how social skills training may implicitly enforce stigma and the necessity of camouflaging, since this training suggests that autistic people need to conform to a non-autistic standard of social communication. Instead, they argue that autistic people need to be able to explore their authentic selves and critically appraise non-autistic social rules, but more research is needed in this area. Furthermore, the narratives perpetuated in the media about autism are also thought to enforce stigma (Holton et al. 2014). Health practitioners too – trained predom-inantly in terms of a medical or deficit model of autism – need to acknowledge their role in pro-moting autism acceptance in those just diagnosed as well as in families and caregivers (Nicolaidis 2012). Future research should examine the impact of training, particularly using a social model or neurodiversity approach, on reducing stigma within professionals who encounter autistic peo-ple in their work. Listening to – and including – autistic perspec-tives within research could be vital in improving autism acceptance. Research which does meaning-fully involve autistic people is growing, with several researchers (autistic and non-autistic) developing frameworks and guidelines for this type of research (Chown et al. 2017; Fletcher-Watson et al. 2019). For example, Chown et al. (2017) outline how research should be aligned with the priorities of autistic people themselves, that the social model of disability should be at the research’s core and out-comes should center around improving the everyday lives of autistic people. Similarly, Fletcher-Watson et al. (2019) highlight the need for elements such as empathy, authenticity, and respect within autism research. Researchers should consider how these guidelines could be incorporated into their future work and how their research supports the aim of improving autistic people’s lives and the inclusion of autistic people in society. By striving to make the world a more accessi-ble place for autistic people, we may see concur-rent improvements in autistic people’s mental health. Of course, mental health is affected by numerous factors, and more research is needed to fully understand mental health in autism and appropriate treatments to reduce these difficulties. Ultimately, autistic people must be accepted for being autistic people, not as camouflaged versions of themselves.
+
+### Autism and Epilepsy
+
+### Introduction
+
+Autism spectrum disorders (ASD) and epilepsy are both clinically heterogeneous entities whose co-occurrence has long been recognized to exist at a frequency that is greater than could be predicted by chance alone. This observation has led to interest in the possibility of shared causal pathways for both disorders and raises the possibility of future novel interventions that could impact the course of both conditions. Further, the co-occurrence of the disorders pre-sents several diagnostic and treatment chal-lenges and controversies. This encyclopedia entry will provide an overview of terminology, epidemiology and etiology, clinical expression, available findings on developmental course, issues in differential diagnosis, and treatment considerations.
+
+### Categorization
+
+### Terminology
+
+Terms associated with autism include autism spectrum disorder (ASD), high-functioning autism (HFA), pervasive developmental disorders (PDD), and infantile autism. ASD are behavior-ally defined disorders, with literature still utilizing these terms despite the presentation of revised diagnostic criteria in the DSM-5. These terms are defined in introductory chapters in this ency-clopedia. Key terms associated with epilepsy include seizure disorder and pediatric seizure disorder. A seizure is commonly understood as uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, changes in consciousness, thought disturbances, sensory disturbances, or a combination of symptoms. While the terms sei-zure disorder and epilepsy are generally used interchangeably, epilepsy is more formally defined as having two or more seizures within a set period of time, most often within 3 years, for which there is no other identifiable cause such as mass lesion, head trauma, infection, toxic exposure, or metabolic derangement (Matson and Neal 2009).
+
+### Epidemiology
+
+### Epidemiology and Etiology
+
+The prevalence of autism in the pediatric popula-tion is approximately 14.6 cases per 1,000 chil-dren, with a national rate of approximately 1 in 68 cases at age 8 years. Estimated prevalence was significantly higher for boys at about 23.6 per 1,000, than for females at about 5.3 per 1,000 (Christensen et al. 2016). These rates are higher among non-Hispanic white children at about 15.5 per 1,000 than for non-Hispanic black children (13.2 per 1,000) and Hispanic children (10.1 per 1,000); however, it is suspected that these differ-ences in rates are related more to access to care as opposed to true differences in prevalence across racial and ethnic lines (Durkin et al. 2010; Morbidity and Mortality Weekly Report 2012). Further, autistic traits are about 4.5 more com-monly seen in males, with a staggering rate of 1 in 42, than for females (1 in 189) (Christensen et al. 2016). In the general pediatric and adult population, the prevalence of epilepsy is 2–3% (Canitano 2007), with recent estimated lifetime rates of about 10.2 per 1,000 (Russ et al. 2012). The prevalence of having epilepsy and autism as co-occurring, or perhaps comorbid conditions ranges widely from 8% to 30% (Mouridsen et al. 2013; Russ et al. 2012; Spence and Schneider 2009; Tuchman et al. 2010), with children with ASD having a 7- to 10-fold increased odds com-pared to controls for having epilepsy (Jokiranta et al. 2014; Tuchman et al. 2013). Viscidi et al. (2013) found that the prevalence of epilepsy in children with ASD was about 12–13% for chil-dren ages 2–17, with rates rising to about 26% for adolescents age 13 and above. For children with epilepsy, about 30% will eventually have a diag-nosis of ASD (Keller et al. 2017), and individuals with epilepsy diagnosed in childhood are at sig-nificant risk for later manifestation of ASD (Sundelin et al. 2016). While there does not appear to be a specific form of epilepsy that is present in children with ASD, epilepsy does appear to be present more frequently in individ-uals with ASD and Intellectual Disability, with the rates increasing with the severity of the Intellec-tual Disability (Jokiranta et al. 2014). Of signifi-cant concern, there also is increased risk for mortality for individuals with ASD and epilepsy, particularly in the presence of an intellectual dis-ability (Woolfenden et al. 2012).
+
+### Etiological Mechanisms
+
+The frequency of co-occurrence of these two dis-orders has led to interest in the possibility of shared etiological mechanisms in seizure disor-ders and ASD. Proposed theories of shared causality have been related to the deleterious effects of the seizures themselves and associated imbalances between neuronal excitation and inhi-bition (Stafstrom and Benke 2015), with a partic-ular focus on impaired GABAergic signalizing as being a common denominator for co-occurring ASD and epilepsy (Kang and Barnes 2013; Tuchman et al. 2013). Additionally, contem-porary mechanistic understandings of several key neurodevelopmental disorders have led to new theories about the shared role of impaired plasticity during development (Keller et al. 2017). For example, portions of the temporal lobe of the brain and associated neural pathways are likely to be key brain regions in the complex network that has been described as “the social brain.” The tem-poral lobe has long been a suspected region of importance because of the relative frequency of temporal lobe epilepsy both among patients with epilepsy with social challenges and among those with ASD and epilepsy. Animal research using mouse models has demonstrated that mice with induced temporal lobe seizures exhibited less social behavior than control mice (Marin et al. 2008). Neuroimaging studies in patients with tem-poral lobe epilepsy have provided evidence show-ing damage to other recognized social brain structures in this network, such as the hippocampus (Dager et al. 2007). Further, such studies also have begun to show a linkage between aberrant neural migration over the course of neurodevelopment (Blackmon 2015) and general neurological vulner-ability (Gilby and O’Brien 2013) to seizures in individuals with ASD. Another set of examples wherein a potential shared mechanism for both ASD and seizure dis-orders has begun to be explored comes from the study of several recognized genetic syndromes that are associated with both autism features and seizures (Keller et al. 2017; Lee et al. 2015). In this regard, fragile X, tuberous sclerosis com-plex, and Rett’s syndrome all have been proposed as possible models of overlapping causality in ASD and epilepsy/seizures. For example, Rett’s syndrome is a neurodegenerative disorder that affects girls and is currently understood to be caused by mutations in the gene encoding methyl-CpG binding protein 2 (MeCP2). Rett’s syndrome is characterized by regression of verbal skills along with repetitive hand motions that usually begin to occur between 6 and 18 months of age (Brooks-Kayal 2010). Up to 90% of Rett’s syndrome patients develop seizures (Canitano 2007). Tuberous sclerosis has been associated with both epilepsy and autism (Jeste et al. 2016). The prevalence of tuberous sclerosis in the gen-eral population is around 1 case per 10,000 to 20,000 (Sherpherd 1999). Around 1% of children with autism will have tuberous sclerosis (Harrison and Bolton 1997), and approximately 80% of patients with tuberous sclerosis will also have seizures (Canitano 2007). With respect to epi-lepsy, tubers are thought to be foci of epileptic activity, and many of the ASD symptoms have been linked to tubers found in the temporal lobes of the brain (Bolton et al. 2002). Finally, fragile X syndrome is the most common form of inherit-able intellectual disability, and frequently mani-fests with co-occurring autism and seizures. This syndrome is caused by excessive CGG trinucleo-tide repeats on the X chromosome, methylating either in whole or in part the Fragile X Mental Retardation gene leading to many of the pheno-typic features associated with fragile X syndrome (Brooks-Kayal 2010). With approximately one third of individuals with fragile X syndrome showing co-occurring ASD, this syndrome pro-vides a clear single gene disorder for examining not just autism but its related comorbidity. While exact mechanisms for the behavioral manifestations remain unknown in each of these disorders, there has been an expanding knowledge base relating to presumed causal genetic defect (s) and their downstream molecular effects. Resultant impaired inhibitory/excitatory regula-tion and impaired neuroplasticity have been proposed as a possible common explanation for seizures and ASD-related behaviors (Brooks-Kayal 2010). Further, a number of other gene mutations have been associated with ASD, Intellectual Disabilities, and epilepsy/seizures including the genes encoding neuroligins, neurexins, arestelles region X-linked (ARX), and neuropilin-2 (Brooks-Kayal 2010).
+
+### Clinical Expression and Pathophysiology
+
+### Type of Seizures
+
+There are several classification schemas for sei-zure types and epilepsy. The most commonly used classification is based on the broad categories of generalized seizure onset versus focal onset, each with subcategorizations based on various clinical features and origin of seizure activity. Further, there are numerous recognized epilepsy syn-dromes. Seizure types in individuals with ASD are highly variable, and multiple seizure types in the same individual are not uncommon. It is important to note, though, that the prevalence of particular seizure types among those with both disorders does not seem to differ significantly from the distribution of seizure types in epilepsy patients in general (Sternberg 2003).
+
+### Seizure Location
+
+There is a suggestion that seizure location may point to a relationship with autistic features or autism. In epilepsy in which the seizure activity manifests from the frontal lobe, behavioral changes may include irritability, altered mood, subtle changes in alertness, associated attention dysregulation, and cognitive rigidity features often associated with ASD (Fohlen et al. 2004). Seizures originating in the temporal lobe may be associated with autistic features or autism (Hamiwka and Wirrell 2009) in that the individual may present with affective blunting, odd or impaired language functions, including impair-ments in core language functions or pragmatics, and poor recognition of faces.
+
+### Epilepsy Syndromes
+
+The relationship between ASD and seizures also can be understood by considering the presence of an epilepsy syndrome. There are numerous epi-lepsy syndromes, and those that are believed to contribute to progressive disturbance in cerebral function may be termed “epileptic encephalopa-thies.” These disorders begin early in life and are often associated with regression of cognitive, lan-guage, and other neurodevelopmental functions. Many children with these disorders may present with features of ASD or they may in fact meet diagnostic criteria for an ASD (Nabbout and Dulac 2003: Nabbout and Dulac 2008). Among these syndromes, infantile spasms (IS), Landau-Kleffner syndrome (LKS), and epilepsy with continuous spike-waves during slow-wave sleep (CSWS) are most strongly associated with ASD symptomology (Ballaban-Gil and Tuchman 2000). In IS, the association with ASD may as high as 35%, and this risk seems to increase in the presence of a severe intellectual disability, struc-tural brain lesions, and ongoing epileptiform activ-ity in frontal brain regions (Kayaalp et al. 2007; Saemundsen et al. 2007, 2008). LKS and CSWS have overlapping symptoms in relationship to sei-zure presentation, and both manifest features that overlap with ASD symptoms. The failure or regres-sion of language development in these disorders often leads to confusion with autistic regression that is reported in children with and without under-lying seizure disorders (Canitano 2007).
+
+### Age of Seizure Onset
+
+The relationship between ASD and seizures/epi-lepsy can also be investigated by considering the age of seizure onset. It has been theorized that epilepsy with a late onset during adolescence is brought on by the hormonal fluctuations asso-ciated with puberty (Gillberg 1991). One study of children with autism showed that seizure activ-ity peaks between 3 and 10 years of age (Matson and Neal 2009). Other studies, however, have suggested that epilepsy has two peaks in children with autism: one during infancy and another dur-ing adolescence (Volkmar and Nelson 1990). The peak during infancy may correlate with the peak of seizure activity that is seen in children with epilepsy without autism, while the second peak during adolescence may be unique to children with autism (Nomura et al. 2010). Recent data have challenged this bimodal distribution, suggesting that the primary peak occurs by 6 years of age (Jokiranta et al. 2014).
+
+### Intellectual Functioning
+
+The range of the overall level of intellectual func-tioning in individuals with ASD is quite large and variable; however, it has been well established that in populations of children with epilepsy, the risk of autism or autistic features is increased among those with the lowest intellectual function-ing (Hamiwka and Wirrell 2009; Jokiranta et al. 2014). Among populations of children with ASD, those with severe intellectual disability, severe receptive language deficits and motor dysfunction (i.e., those with more severe autism symptoms) have the highest risk of epilepsy (El Achkar and Spence 2015; Mulligan and Trauner 2014; Tuchman et al. 2009); and, conversely, children with ASD and epilepsy manifest more cognitive and neuropsychiatric difficulties than those with-out epilepsy (Viscidi et al. 2014; Weber and Gadow 2017).
+
+### Developmental Course
+
+When considered independently, the developmen-tal course, severity, and outcomes of individuals with ASD and epilepsy are highly variable and dependent on numerous factors. To date, there are scant empirical data related to the moderating or mediating effects of epilepsy and ASD on one another in relation to developmental course and outcomes. In general, children with comorbid or co-occurring ASD and seizures/epilepsy have lower IQ, lower adaptive behavior, more emo-tional problems, and have more frequent use of psychiatric medications (Matson and Neal 2009). Also, a higher rate of seizure activity has been linked to decreased intellectual functioning (Jokiranta et al. 2014; Matson and Neal 2009) but is unclear how medications or other factors (e.g., other neurological factors) may be contributing to this suspected association. Additionally, the pres-ence of temporal lobe seizures has been described as a poor prognostic indicator in relation to social adaptation among individuals with ASD and sei-zure disorders (Matson and Neal 2009). As noted above, the notion that children with comorbid ASD and seizure disorders have more pronounced social impairment when compared to children with ASD who do not have seizures has been proposed, but this issue is only beginning to be evaluated (Tuchman 2013).
+
+### Evaluation and Differential Diagnosis
+
+### Issues in Differential Diagnosis
+
+Early diagnosis and treatment of both epilepsy and autism are crucial in order to maximize devel-opment and quality of life (Tuchman et al. 2010). Early identification and treatment allow for the optimal usage of all therapies and resources available. The potential co-occurrence of these disorders does raise several important issues in differential diagnosis. For example, the mainstay of evaluation in seizure disorders is the electroen-cephalogram (EEG), but a seizure evaluation also can include metabolic and genetic components. It is important to note that abnormal EEG activity can be seen in 7–28% of children with autism, but without any other symptoms of epilepsy (Youroukos 2007). On the other hand, high-functioning individuals with autism may be missed when presenting for epilepsy treatment (Matsuo et al. 2010). The association between autism and seizures has led the Committee on Children with Disabilities of the American Academy of Pediatrics to recommend prolonged sleep-deprived EEG in children with ASD show-ing developmental regression or in those where there is a high suspicion of subclinical seizures (American Academy of Pediatrics 2001). Due to the current dearth of empirical knowledge about subclinical epileptiform activity and its treatment, universal screening via EEG for all children with ASD has not yet been recommended as a standard of care (Johnson and Myers 2007), but its routine use has been suggested (Swatzyna et al. 2017). Another important area of concern relates to the convergence of sleep problems in the populations of children with ASD and epilepsy/seizures. Sleep difficulties are common among individuals with neurologic disorders in general as well as in those with ASD and seizure disorders (Malow 2004). Screening for sleep problems and formal sleep evaluations (based on clinical need) are often important for individuals presenting with comorbid ASD and epilepsy (Accardo and Malow 2017). Sleep disorders have significant implica-tions for behavioral functioning and quality of life beyond challenges associated with the underlying disorder (Clarke et al. 2005), such as creating daytime sleepiness, increased irritability, less efficient cognitive functioning (potentially in addition to cognitive impairment), and de-creased seizure threshold. Further, sleep studies in children with ASD and sleep problems in rare instances may elucidate a previously unrecognized seizure disorder related to sleep (Accardo and Malow 2017; Malow 2004).
+
+### Treatment Considerations
+
+Early recognition of ASD and co-occurring epi-lepsy is important in that it is hoped that develop-mental outcomes can be improved via early treatment. Medication is a first-line treatment in children with epilepsy. The chief goal here is to eliminate (or lessen) all seizure activity while minimizing medication-related side effects such as behavioral problems or weight gain. In autism, psychosocial and behavioral interventions are commonly used as first-line interventions for behavioral symptoms. In autism, medication treat-ment is used as an adjunctive therapy to lessen symptoms of inattention, hyperactivity, repetitive behaviors, impulsivity, irritability, and aggression (Tuchman et al. 2010). Antiepileptic medications (AEDs) are the mainstay of treatment in epilepsy. Several AEDs are used commonly in general psychiatric practice due to beneficial psychotropic properties, most notably in mood stabilization and the mitigation of aggression. Examples include valproic acid, carbamazepine, lamotrigine, and levetiracetam. While a full discussion of this class of medication is beyond the scope of this chapter, the aforemen-tioned AEDs have been evaluated in the ASD population with and without epilepsy in several case series or small open-label trials. At present, AEDs seemed to have had equivocal results in terms of benefit with irritability, aggression, or behaviors associated with the core features of autism such as repetitive behaviors (Hirota et al. 2014; Tuchman et al. 2010), and concerns always are present for the medications to create affective blunting and/or to negatively impact cognitive and social capabilities. Formal evaluation via large randomized clinical trials in the ASD popu-lation with seizures is lacking and will be an important future step in guiding the care of this population (Tuchman et al. 2010). Epileptic encephalopathies associated with ASD, such as infantile spasms (IS) or Landau-Kleffner syndrome (LKS), are treated early and aggressively with AEDs, adrenocorticotropin hormone (ACTH), steroids, the ketogenic diet, or surgery. The main focus of these interventions is to improve seizure control. Outcomes of these practices as they relate to mitigation or prevention of ASD features are unknown (Crumrine 2002; Kosso et al. 2005; Trevathan 2002; Wheless 2004). The treatment of epileptiform activity on EEG, without the presence of clinical seizures, is an area of considerable debate. This debate is most rele-vant among those with ASD showing cognitive regression, but without a clear epilepsy syndrome or epileptic encephalopathy. Approximately 30% of children with ASD present autistic regression, which is understood as a loss of verbal and nonverbal communication skills between approx-imately 12 and 24 months of age. The relationship between regression and epileptiform activity noted in this subgroup has been postulated, but remains unclear, and treatment recommendations for this subgroup remain without a clear evidence base (Baird et al. 2006; Venkateswaran and Shevell 2008). New information about shared genetic and molecular causal pathways may provide new insights about the management of children with epilepsy and autism. For example, in fragile X syndrome, mouse models have provided evidence that FMRP dysfunction may lead to behavioral and cognitive deficits as well as seizure formation (Brooks-Kayal 2010; Penagarikano et al. 2007). A key target in this dysregulation may be the metabotropic glutamate receptor (MgluR). Modulation of MgluR in mouse models has provided promising results in terms of behav-ior, cognition, and seizure formation (Brooks-Kayal 2010). Several molecules that modulate the function of this receptor are currently in vari-ous phases of development. Their role in epilepsy treatment and treatment of any ASD feature remains to be seen, but it is clear that much is to be learned from conditions where ASD and epilepsy coexist (Brooks-Kayal 2010).
+
+### Conclusion
+
+This encyclopedia entry provided an overview of the interesting association between autism and seizures disorders. This is an intriguing area for clinical inquiry, but it is also an area ripe for scientific investigation. With the prevalence of seizure disorders in the general population being approximately 2–3%, the rate of seizures in the population of individuals with autism is arguably as high as 22 times as much, with about one third experiencing at least one seizure by adolescence. With the recently documented prevalence of autism in the population, this combines to create a significantly large number of individuals with comorbid ASD and seizures. As a subgroup of individuals with ASD, however, this area has only begun to receive scientific scrutiny. Increased understanding of the type of seizures, identifiable neurological contributors, other asso-ciated conditions, and developmental course all should contribute to improved seizure manage-ment. Key to this understanding is early, compre-hensive evaluation and associated differential diagnosis. Also, recognizing that at least one-third will manifest a seizure by adolescence impli-cates the need for routine and thorough develop-mental surveillance for seizure manifestations by an interdisciplinary group of trained profes-sionals (Eom et al. 2014). Ultimately, coordinated multimodal treatment approaches will be critical to maintaining a good quality of life for individ-uals with ASD and comorbid seizure disorders. Although treatment of epilepsy is a medical necessity, it typically will not be enough to address the additional symptoms related to ASD and related social and cognitive functioning (Tuchman 2013).
+
+### Autism and the Caribbean
+
+### Historical Background
+
+The Caribbean comprises over 700 islands, islets, reefs, and cays between North and South Amer-ica. It is inhabited by approximately 42 million persons. Although many similarities exist between the islands and territories, there are huge variations in the following areas: population, gross domestic product, languages, educational status of the populous, and the healthcare systems. This report captures the status of autism in 12 of the English-speaking countries and terri-tories of the Caribbean (Anguilla, Antigua and Barbuda, the Bahamas, Barbados, Dominica, Grenada, Jamaica, Saint Kitts and Nevis, Saint Lucia, St. Vincent and the Grenadines, Tortola, and Trinidad and Tobago) with information on published research from the English- and Dutch-speaking Caribbean. There is a dearth of published data on the history of autism in the Anglophone Caribbean. Up until the late twentieth century, a minimum level of basic knowledge, lack of appropriate resources (health, educational, and social), stigma, and discrimination resulted in many individuals with developmental disabilities being hidden away at home or housed in mental institutions. Over the last two decades, there have been a number of drivers for addressing the needs of the disabled community, starting with the adoption of the Panama Commitment to Persons with Disabilities in the American Hemisphere by the Organization of American States (OAS) in 1996 and more recently the signature of the Convention of the Rights of Persons with Disabilities by all of the island states within the last decade (Collamarco et Delamonico 2013). On a regional level, the importance of addressing autism was first discussed by Heads of Government in the con-text of a larger discussion on special needs and disability during the 34th regular meeting of the Caribbean Community (CARICOM) Heads of Government in the Port of Spain in July 6, 2013. The call to address special needs and disabilities with a higher-level meeting was raised by Haiti and led by the Prime Minister of the Bahamas the Honorable Perry Christie and Prime Minister of Trinidad and Tobago the Honorable Kamla Persad-Bissessar who reported that their child and grandchild, respec-tively, are autistic.
+
+### Services
+
+No center in the English-speaking Caribbean offers services exclusively for autism. Over the last 40 years with increasing awareness of the need to identify and address early developmental challenges in children, the power of early inter-vention, and the rights of all children, the number of child development centers throughout the region has grown (see Table 1). These centers cater to children with all forms of disability, including autism. The most recent additions have been the Marjorie Davis Institute which opened in the Bahamas on April 21, 2015, and the Autism Centre in the British Virgin Islands on October 29, 2012. The Autism Centre in Tortola initially exclusively provided services for children and adults on the autism spectrum; however, its function has evolved to include the provision of services for other disabilities. This evolution cap-tures a trend that resonates throughout the region.
+
+| Country/territory | Centers providing autism services | Services provided | Free services |
+|---|---|---|---|
+| Bahamas | The Marjorie Davis Institute | Evaluation and treatment | Yes |
+| | Caribbean Center for Child Development | Evaluation and treatment | No |
+| Barbados | Albert Cecil Graham Development Centre | Evaluation and treatment | Yes |
+| | Sunshine Early Stimulation Centre | Treatment | No |
+| | The School for Special Needs | Treatment | No |
+| | The Irvine Wilson School | Treatment | Yes |
+| British Virgin Islands | The Autism Centre | Evaluation and treatment | Yes |
+| Dominica | The Alpha Center | Treatment | No |
+| | The Achievement Centre | Treatment | No |
+| Jamaica | The Pediatric-Adolescent Clinic University Hospital, Kingston | Evaluation | No |
+| | The Early Stimulation Centre and the Early Stimulation School | Evaluation and treatment | Yes |
+| | The Montego Bay Autism Center | Treatment | No |
+| | The McCann Child Development Centre | Treatment | No |
+| | The Promise Learning & Training Centre | Treatment | No |
+| St. Lucia | Child Development Guidance Clinic | Evaluation and treatment | Yes |
+| Trinidad and Tobago | Child Development Clinic, Eric William Complex, Mount Hope | Evaluation | Yes |
+| | The Child Guidance Clinic | Evaluation | Yes |
+| | The Mental Health Clinic, San Fernando | Evaluation | Yes |
+| | The Mental Health Clinic, Tobago | Evaluation | Yes |
+| | The Autism Society of Trinidad and Tobago | Treatment | Yes |
+
+Some of the child development centers are pub-licly funded; however, the majority are formed by non-governmental organization and receive sig-nificant subventions from the government and donations from philanthropic associations. Their budgets are extremely vulnerable to the fiscal adjustments that frequently occur in small devel-oping economies. This situation also pertains to most of the private special education schools; some of which have closed as a result of inade-quate funding. There are extensive wait periods to access ser-vices in the public centers and clinics (up to 3 years in some countries). The extensive wait adds to the delay in diagnosis and commencement of interventions and adversely impacts outcomes. A significant minority of children access services in the private sector where the availability of trained professionals is often greater than the pub-lic sector. An effort to expand and decentralize services has been made in Barbados with the addition of speech and language therapy in some of the public clinics. Additionally the evaluation and treatment services are slowly increasing with greater awareness of autism and the benefits of early intervention. The identification of autism sometimes occurs as a result of concerns raised during routine devel-opmental assessments by pediatricians. However for many of the children who receive services in the public sector, concern about the child’s socio-communicative development first occurs in the preschool and elementary school environments. It is also in the school environment that most children receive intervention. For a vast number of children and adolescents who are identified, the main intervention is place-ment in a special education class with children who have other developmental disabilities. One-on-one instruction, routine application of applied behavioral analysis, Treatment and Edu-cation of Autistic and Related Communication Handicapped Children (TEACCH), and other evidence-based interventions are more common in private schools but seldom present for the majority of children who receive services in the public sector. Where evidence-based interven-tions for teaching children with autism are avail-able, very few children receive the recommended 20–40 h per week. Speech and language therapy and occupational therapy are seldom integrated into the education system; these therapies are more likely to be integrated in the education plan of children with autism who attend private schools. The availability of specialists and fre-quency of receipt of these services vary across the countries and territories with St. Vincent and the Grenadines (population, 109, 000) reporting no speech and language therapist on the island. Parents will often access psychoeducational test-ing, speech and language, occupational therapy, and behavior therapy privately; the cost of these services presents an additional financial burden in already difficult circumstances. Some countries maintain a database of persons with disabilities, and in Jamaica the University of the West Indies maintains an autism database; however no other national registry of persons with autism was identified during the preparation of this chapter. Additionally outside of Jamaica and Aruba, no documented monitoring of the situation of persons with autism or studies in the area of autism were identified. The University of the West Indies, Department of Child and Adolescent Health, Mona campus (Jamaica) has been the major center for research in autism in the region with extensive publication by Professor Maureen Samms-Vaughan, Dr. Mohammed Rahbar, and colleagues on possible etiological factors, associations, parental experi-ence, and barriers to diagnoses and implementa-tion of interventions for autism. Dr. Ingrid Van Balkom from the Child and Adolescent Psychia-try Clinic at Oranjestad (Aruba) has also been a major author of published research on autism in our region. They have contributed a wealth of information on potential causation, risk factors, and barriers to diagnoses and implementation of interventions in the Caribbean region.
+
+### Legal Issues, Mandates for Service
+
+All of the ten independent countries described in this report and the United Kingdom (of which Anguilla and Tortola are overseas territories) rat-ified the Convention on the Rights of the Child in the 1990s. Six of the countries (Barbados, Domi-nica, Grenada, Jamaica, St. Vincent and the Gren-adines, and Trinidad and Tobago) ratified the Convention on the Rights of Persons with Dis-abilities (CRPD) or joined by accession within the last 10 years with five of the six joining in the last 3 years. The United Kingdom (of which Anguilla and Tortola are dependencies) ratified the CRPD in 1991. The Bahamas and Jamaica have enacted dis-ability legislation, and with their ratification of the CRPD, many of the other countries are in the process of developing disability legislation. The absence of disability-specific legislation and man-dates has decreased the ability of the disabled community to advocate for its needs. The absence of legislation is also reflected in the lack of a structured approach to the provision of services and entitlements for the disabled community. Going forward it is absolutely essential that the organized leadership lobby their respective policy makers to achieve their support for allocating the drafting of specific disability legislation as a high priority in the face of a multitude of competing demands. Enforcement of the legislation in those countries which have enacted relevant laws encounters problems including but not limited to the availability of funding and skilled profes-sionals. In spite of the above-stated challenges, the Dutch overseas territory Aruba has been mak-ing strides with the meeting of high-level national officials with representatives of Autism Speaks on September 22, 2014, to assist with the develop-ment of an autism strategy on island. Most countries have stated in their education act the need to provide education for children with special needs in an appropriate environment; however there is no autism-specific legislation or mandates for provision of services or entitlements specifically for autism. In the region, the receipt of disability assis-tance is not automatic; the vast majority of per-sons with disabilities are required to apply for disability assistance. Furthermore in some coun-tries, the financial assistance can be discontinued if the individual is able to earn any income.
+
+### Overview of Current Treatments and Centers
+
+Please see below the table of some of the centers that offer evaluation and/or treatment for autism.
+
+### Overview of Research Directions
+
+Most of the research published on autism in the region has focused on causation; to this end the University of the West Indies, Mona campus, has led the way with published research in peer-reviewed journals. Their research has examined the possible role of heavy metals (manganese, cadmium, arsenic, and mercury), the role of glu-tathione S-transferase (GST) genes, parental age, factors inhibiting early identification, and intervention. Dr. Ingrid Van Balkom from the Child and Adolescent Psychiatry Clinic at Oranjestad (Aruba) has also examined and confirmed pater-nal age as a risk factor and has studied the preva-lence rates of autism spectrum disorder in Aruba which has been determined to be 5.3 per 1,000 for the period 1990–1999.
+
+### Overview of Training
+
+Awareness training has been the most common type of training that occurs in the Anglophone Caribbean. Public education on autism is often incorporated into Autism month activities. Edu-cational activities on the identification of children with autism targeting healthcare professionals and educators are usually linked to Autism month and Autism Awareness Day. A program of systematic training and continuous education for teachers who work in special education exist in the Baha-mas and Tortola; however no systematic continu-ous education on autism exist for general teachers and healthcare providers in any of the Anglo-phone countries and territories of the region.
+
+### Social Policy and Current Controversies
+
+In general, with increasing visibility and inclusion of persons with disabilities (e.g., in Barbados the leader of the Senate the Honorable Kerry-Ann Ifill is visually impaired, and a major supermarket chain in the region has integrated employees with disabilities in visible positions), attitudes toward persons with developmental disabilities are improving with slow but steady movement to inclusivity. Autism awareness continues to grow in the region as a result of continuous advocacy efforts spearheaded by the autism associations, other ser-vice organizations, and prominent families affected in the Caribbean region. Additionally, access to the Internet has allowed parents to become acutely aware of the importance of early diagnosis and interventions. In part, this increased knowledge adds to the frustration around accessing intensive, evidence-based intervention in their countries. Parents are often concerned about the quality of the educational services and are fearful that the emphasis of some special needs schools is skewed toward daycare as oppose to learning. National autism associations exist in 5 of the 12 countries and territories: Bahamas, Barbados, Jamaica, Trinidad and Tobago, and Tortola. The associations are mainly funded by private sector and philanthropic support with some organiza-tions receiving small subventions from the respec-tive governments. These organizations vary in the scope and continuity of services they offer; at minimum, they offer educational information on autism spectrum disorders and support for affected individuals and their families. The Autism Society of Trinidad and Tobago is one of the more active autism associations in the region with a register of 650 persons with autism. It trains parents as cotherapists and offers social skills play groups for the children. Additionally they provide recreational activities and life skills training for the adults, music and art therapy on Saturdays, and camps for adults and children dur-ing the long holidays. Possibly the area of greatest concern beyond early identification is the plight of young adults with autism. Crisis often occurs when they sur-pass the age when schooling is mandated by law, and they have not attained skills for independent living or employment. Many parents (often single mothers who are the sole breadwinners of the household) grapple with the choice of leaving their dependent adult son or daughter at home unsupervised or staying away from work at the risk of compromising employment. In 2015, the deficit of services for dependent children and adults with disabilities was in part addressed in Barbados and Dominica; in Barba-dos, through the philanthropic work of Derrick Smith, the state-of-the-art vocational center at the Derrick Smith Secondary School and Voca-tional Centre was opened. The vocational center caters to adults with developmental disabilities. Additionally on the island of Dominica, advocacy by the Parents Advocating for Children with Dis-abilities Inclusion in Society (PACIS) and an assessment of the number of children affected by disability on the island culminated in the develop-ment of the PACIS Care Center scheduled to be opened in September 2015. The center will pro-vide respite for parents who have to make the difficult decision of earning an income outside of the home or caring for the physical needs of their children with disabilities.
+
+### Autism Behavior Checklist
+
+### Description
+
+The Autism Behavior Checklist (ABC) is one com-ponent of the Autism Screening Instrument for Educational Planning (ASIEP) and is the only one that has been evaluated psychometrically. The ABC is a 57-item behavior rating scale assessing the behaviors and symptoms of autism for children 3 and older. The instrument consists of a list of 57 questions divided into five categories: (1) sen-sory, (2) relating, (3) body and object use, (4) lan-guage, and (5) social and self-help. Each item has a weighted score ranging from 1 to 4. The ABC is designed to be completed independently by a par-ent or a teacher familiar with the child for at least 3–6 weeks. It should take from 10 to 20 min to complete. The protocol is then returned to a trained professional for scoring and interpretation.
+
+### Historical Background
+
+The Autism Behavior Checklist (ABC) was published in 1980 and is part of a broader tool, the Autism Screening Instrument for Educational Planning (ASIEP). The content of the ABC was based on other autism screening instruments available at the time of its development.
+
+### Psychometric Data
+
+The ABC’s item score weights and cutoff scores were developed using over 1000 completed ques-tionnaires from children and adults with autism, intellectual disabilities, visual and hearing impair-ments, and emotional disturbance, as well as those with typical developmental profiles. Higher sub-test or total scores reflect greater impairments and more severe levels of autism symptomology. Although widely used for years, several con-cerns about its psychometric properties have been identified. For example, studies have found inter-rater reliability to be much lower than those reported in the initial study during development. In addition, the ABC subscales were not empiri-cally derived and were established by grouping items based on face validity. Later studies have also shown significant differences between parent and teacher reports, although it is not clear whether the discrepancies indicate weaknesses specific to the ABC or reflect differences encountered commonly when using multiple informants. Per-haps more important are questions concerning the sensitivity and specificity of the ABC. Several studies have suggested the cutoff score of 67 leads to a high number of false negatives. Stud-ies lowering of the cutoff scores to 58 and 45 respectively have shown increased sensitivity and decreased specificity. The ABC has been shown to correlate significantly with the Gilliam Autism Rating Scale (GARS), but correlations with the Childhood Autism Rating Scale (CARS) have been variable.
+
+### Clinical Uses
+
+The ABC is primarily designed to identify chil-dren with autism within a population of school-age children with severe disabilities. When used in conjunction with other diagnostic instruments and methods, the ABC can be useful as a symp-tom inventory to be used by clinicians in structur-ing their evaluation.
+
+### Autism Behavior Inventory (ABI)
+
+### Description
+
+The ABI is a parent- or caregiver-reported outcome measure that was developed to assess change in core and associated symptoms of ASD. The scale consists of 62 items covering 5 domains of behav-ior. The two core ASD domains are Social Com-munication (comprised of Reciprocity and Verbal and Nonverbal communication subdomains) and Restrictive Behavior (comprised of Resistance to Change, Restricted Interests, Stereotypical Behav-ior, Hypersensitivity subdomains). In addition, three associated domains of Mood and Anxiety, Self-Regulation, and Challenging Behavior repre-sent behaviors that are not part of the ASD diagno-sis but commonly occur in individuals with ASD and inform clinical consideration. Caregivers endorse items on a 4-point scale relating either to Quality (how well behaviors are carried out) or Frequency (how often a behavior occurs), over the past 7 days. A shorter version of the ABI (ABI-S), that includes 24 items across all 5 domains, may be used to assess behavior more frequently (e.g., every 2 weeks). The ABI was developed as an online rating scale, but a paper version is also available. A single form is suitable for caregivers of individ-uals with ASD aged 3 years through adulthood and may be used with both verbal and minimally verbal groups. Scores are obtained by the averag-ing of all completed responses for each domain. A core score corresponds to the average of all responses across the Social Communication and Restrictive Behavior domains.
+
+### Historical Background
+
+There are limited reliable, valid, and objective end-points for measuring clinically and statistically sig-nificant changes in the core and associated symptoms of ASD, and this lack hinders the inter-pretation of treatment outcomes (McConachie et al. 2015). There is a need for measures that have shorter recall periods and reduced burden for respondents, with ample evidence demonstrating that the constructs measured are both relevant and well understood by parents (Aman et al. 2015). The ABI was developed in response to this need, in consultation with regulatory authorities, and in alignment with the FDA (2009) guidelines for patient- and caregiver-reported outcome measures. The iterative scale development of the ABI included two pilot studies (Bangerter et al. 2017), a validation study (Bangerter et al. 2019), and a cognitive interview study (Pandina et al. 2018). Through the entirety of scale development, an ini-tial list of 300 items was refined and reduced through review and testing with multiple stake-holders and based on statistical performance and clinical importance. Caregiver feedback led to the inclusion of additional items on sleep and food sensitivity. Delphi review (Dalkey 1969) by an expert panel of ASD researchers and clinicians led to the selection of items for the ABI-S that were representative across the core and associated domains and were considered to have the most potential for short-term change. Finally, cognitive interviews with caregivers of individuals with ASD, who were representative of a broad range of age and linguistic ability, confirmed that the instructions and items were well understood and that the response options and response period of 1 week were appropriate. Caregivers reported that scale was easy to use and comprehensive in the range of items covered. As a result of this final cognitive debriefing study, a small number of items were removed or reworded resulting in the current 62-item version of the ABI (v1.1) and a 24-item ABI-S (v1.1).
+
+### Psychometric Data
+
+Clinical experts assigned ABI items to groups forming domains and subdomains; these were further confirmed with factor analysis in a sample (n ¼ 353) of online survey responses (Bangerter et al. 2017). The items were subjected to confir-matory factor analysis (CFA) with principal axis factoring. The Kaiser-Meyer-Olkin measure of the sampling adequacy ratio of total items was 0.932, indicating appropriateness of factor struc-ture. The five factors accounted for 63.74% of the variance in item scores. Items loaded onto respec-tive domains and any cross-loading items were reviewed as part of the item-reduction process. In addition, inter-item correlation, item discrimi-nation, and item information functioning were taken into account to produce a 73-item version of the ABI. This version was further reduced to 62 items comprising the ABI v1.1. Research in a group of individuals with a clin-ically confirmed diagnosis of ASD (n ¼ 144) demonstrated sound psychometric properties of the ABI v1.1 (Bangerter et al. 2019). Internal consistency across domains was high (Cronbach’s alpha 0.84–0.89). Test-retest reliabil-ity 3–5 days after baseline was excellent (ICC values ranging from 0.84 to 0.93). Convergent and discriminant validity were assessed by com-paring ABI domain scores with pre-specified sub-scales of comparison instruments. For convergent validity, strong positive Pearson correlations were found in core ASD domains, for example, ABI Social Communication with Social Responsive-ness Scale (SRS), Social Communication and Interaction (0.69), and ABI Restrictive Behavior with Repetitive Behavior Scale-Revised (RBS-R) (0.75). Similarly, for associated domains, ABI Mood and Anxiety correlated with Child and Adolescent Symptom Inventory (CASI) anxiety scale (0.77), ABI Self-Regulation correlated with Aberrant Behavior Checklist (ABC) Hyperactiv-ity and Non-Compliance (0.88), and ABI Chal-lenging Behavior with ABC Irritability (0.76). Short form items were selected based on their statistical performance and clinical expert feed-back. Psychometric properties for the ABI-S v1.1 were similar to those reported for the ABI v1.1; for example, internal consistency for the ABI-S domains was 0.69–0.79, and test-retest reliability was good (0.77–0.88). The ABI has been developed as a measure of change in symptoms or behavior over time and is currently being implemented within an interven-tional clinical trial (NCT03664232), the data from which will allow understanding of the sensitivity to change of the ABI. In an 8–10-week treatment as usual, observational trial (Ness et al. 2019; Bangerter et al. 2019), participants showing improvements in ASD severity based on category change in SRS-2 Total Scores showed analogous ABI domain score improvements in Core ASD Symptoms, Social Communication, and Restric-tive Repetitive Behaviors (moderate to large within-group effect sizes of 0.63, 0.50, and 0.41, respectively); these effects were not observed in groups with no documented change or who were reported to have worsened. Further validation, including sensitivity to change and a confirmatory factor analysis of the ABI v 1.1, is planned as data from ongoing research studies become available. Studies will take place in individuals with broader range of ages and levels of functioning. Translations of the ABI into various languages are also in preparation, alongside associated cross-cultural validation.
+
+### Clinical Uses
+
+The ABI and the ABI-S are designed to measure change in response to intervention and allow for the potential to complete one instrument in place of discrete alternatives commonly used in treatment outcome studies and clinical drug trials. Both instruments are freely available in paper form for use in clinical or research settings, subject to terms and conditions, and can be obtained via email at autismbehaviorinventory@its.jnj.com. Caregivers, including healthcare professionals who spend more than 3–4 h a week with the person who has ASD, can complete the scale. The scale can be repeated at weekly or longer intervals by the same respondent, in order to determine response to an intervention based on change from baseline administration. The ABI takes approximately 10–20 min to complete and the ABI-S around 5–10 min. A clinician version of the ABI (ABI-C) is cur-rently being tested. This version allows clinicians and other healthcare professionals to assess the same domains and subdomains of the ABI, using 14 items with a 0–7-point scale of symptom severity.
+
+### Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Also Referred to as the “Autism CARES Act of 2019”)
+
+### Definition
+
+The “Autism Collaboration, Accountability, Research, Education, and Support Act of 2019,” abbreviated as the “Autism CARES Act of 2019” (hereafter “the Act”), is a milestone law in the United States that provides federal funding to the US Department of Health and Human Services (DHHS) for services and research concerning individuals with autism spectrum disorder (ASD) (Pub. L. No. 116–60, 2019). The Act supports ASD-related programs in three DHHS agencies: National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Admin-istration (HRSA) (DHHS 2017). The programs covered under the Act include biomedical ASD research and the continued development of best practices to enhance the lives of persons with ASD. Importantly, the Act also formally expands the focus of US government programs to include research and services that assist individuals with ASD across their life spans, not only children and young adults (Turcotte et al. 2016).
+
+### Legislative Details
+
+Under the Act, the US Congress assigns govern-ment funds for a wide range of ASD-related pro-grams with an emphasis on seven key activities: research, surveillance, early detection, preven-tion, treatment, education, and disability support. The Act has three general goals: [1] The law expands efforts to conduct research, surveillance, education, detection, and intervention for all individuals with autism spectrum disorder across their lifespan, regardless of age. . . [2] [It] also aims to reduce disparities among indi-viduals from diverse racial, ethnic, geographic, or linguistic backgrounds, and [3] directs additional care to rural and underserved areas. (U.S. House of Representatives 2019) The Act defines “underserved areas” as geo-graphic locations where there are shortages of healthcare professionals available to provide ser-vices to the public. In addition, the Act re-establishes the Interagency Autism Coordinat-ing Committee (IACC) federal advisory commit-tee, which is responsible for coordinating and guiding government efforts on issues related to ASD in public forums (IACC 2001–2020). The IACC is made up of federal government workers, industry experts, academic researchers, and mem-bers of the public. The Act’s 5-year reauthorization of funds includes annual authorizations of $23.1 million for developmental disability surveillance and research; $50.599 million for ASD education, early detection, and intervention; and $296 million to carry out the work of the IACC and other DHHS programs. The Act’s funding covers activities through September 30, 2024. Congress will need to provide additional government funding before October 1, 2024, so that the DHHS can continue the services and research facilitated under the Act. The Autism CARES Act of 2019 is designed to help society obtain new insights regarding effec-tive ASD services, interventions, and treatments (U.S. House of Representatives Congressman Chris Smith 2019). The Act contains eight pri-mary components: 1. Authorizes $1.8 billion in funds, including $296 million in annual funding to the NIH (2020), $23.1 million to the CDC (2019), and $50 million to HRSA (2019) 2. Reauthorizes and expands the IACC 3. Reauthorizes government program activities including: (a) Expanding ASD research at the NIH (2015) (b) Continuing the CDC’s collection of state-level ASD data (CDC 2020) (c) Continuing the ASD education, early detection, and intervention activities supported by the HRSA and the IACC (HRSA 2020) 4. Revises the scope of government programs and activities in three key areas: (a) Encompassing ASD individuals of all ages, rather than only children (b) Increasing funding on programs in areas with a shortage of personal health services (c) Reducing health-outcome disparities across diverse populations. 5. Adds new members of IACC from the Depart-ments of Labor, Justice, Veterans Affairs, and Housing and Urban Development. 6. Increases from two to three IACC members who are self-advocates, parents or legal guard-ians and advocacy/service organizations. 7. Empowers the DHHS Secretary to prioritize grants to rural and underserved areas across the United States 8. Requires DHHS agencies to compile a com-prehensive report to Congress that details cur-rent and future outlooks government services and research initiatives concerning ASD. This report must be completed by no later than September 30, 2021, which is 2 years after the law was first enacted. The Act specifies that the report must contain the following information: (a) Demographic factors associated with the health and well-being of individuals with ASD (b) Recommendations on establishing best practices to ensure interdisciplinary coordination (c) Improvements for health outcomes (d) Community-based behavioral support and interventions (e) Nutrition, recreational, and social activities (f) Personal safety
+
+### Legislative History and Background
+
+Congress typically approves funds for DHHS’ ASD-related programs in 5-year appointments. For the past two decades, Congress has continu-ously recognized the need for the IACC and for increased US government research and support programs regarding ASD. See Table 1. In 2000, Congress first established the IACC under the Chil-dren’s Health Act of 2000 – this law intensified US government research, prevention, and treatment activities for a number of conditions that signifi-cantly impact children, including ASD (Pub. L. No. 106–310, 2000). In 2006, Congress passed the Combating Autism Act of 2006, which focused on specific DHHS services for populations with ASD and elevated the status of the IACC as an official federal advisory committee that communi-cates directly with the Office of the Secretary of DHHS (Pub. L. No. 109–416, 2006).
+
+| Year | Law title | Public law number |
+|---|---|---|
+| 2000 | Children’s Health Act | Public Law 106–310 |
+| 2006 | Combating Autism Act | Public Law 109–416 |
+| 2011 | Combating Autism Reauthorization Act | Public Law 112–32 |
+| 2014 | Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act | Public Law 113–157 |
+| 2019 | Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act | Public Law 116–60 |
+
+From 2006 to the present, Congress has reauthorized funding for the IACC and steadily expanded funding for ASD-related programs within DHHS. Each act focuses on supporting federal ASD research and services for surveillance, early detection, prevention, treatment, education, and dis-ability programs within DHHS. In 2011, 2014, and 2019, Congress passed the following respective laws: Combating Autism Reauthorization Act of 2011 (Pub. L. No. 112–32, 2011); Autism Collab-oration, Accountability, Research, Education, and Support (CARES) Act of 2014 (Pub. L. No. 112–32, 2014); and the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Pub. L. No. 116–60, 2019). On February 7, 2019, the Act was first intro-duced as a bill within the House of Representa-tives (House Bill 1058). The House passed the Act on July 24, 2019. The Senate approved it shortly thereafter on September 19, 2019. On September 30, 2019, the Act was signed into law by the president. More than 35 nonprofit organizations endorsed the Act, including the Autism Society of America, Autism Speaks, Autism New Jersey, the Association of Univer-sity Centers on Disabilities, the Children’s Hos-pital Association, the National Council on Severe Autism, the Congress, and the National Down Syndrome Society.
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