Fred R. Volkmar, Brian Reichow and James C. McPartland (eds.)Adolescents and Adults with Autism Spectrum Disorders201410.1007/978-1-4939-0506-5_1
© Springer Science+Business Media New York 2014
1. Autism Spectrum Disorder in Adolescents and Adults: An Introduction
(1)
Yale Child Study Center, Yale School of Medicine, New Haven, CT, USA
(2)
AJ Pappanikou Center for Excellence in Developmental Disabilities, University of Connecticut Health Center, Farmington, CT, USA
Abstract
Seventy years have passed since Leo Kanner’s classic description of autism. Although the pace of research has increased dramatically, research specifically focused on adolescents and adults remains limited in many respects. Numerous outcome studies have been conducted and suggest potential for markedly improved outcome with intervention. Unfortunately studies on adults after early adulthood are sparse indeed. This volume reviews work in multiple areas. The chapters review what is known and highlight important areas for future research. It does appear that with support more and more individuals with autism/autism spectrum disorder can be independent and self-sufficient. New models of care are needed to support these individuals as well as those who continue to need high levels of care.
Introduction
This chapter reviews the current state of the science and best clinical practice in research and service for adolescents and adults with autism spectrum disorder (ASD)1 and serves as an introduction to the volume as a whole. Subsequent chapters cover these topics in detail. In this introduction, we provide an overview, aiming to highlight current understanding of ASD in adolescents and adults, as well as gaps in knowledge. In 1983, Schopler and Mesibov’s earlier book on this topic addressed topics relevant to adults, such as education, medical care, behavior problems, sexuality, family issues, and independent living. At that time, most knowledge was based on case reports, clinical experience, anecdote, and occasional open intervention studies. In the three decades that have elapsed since its publication, methods and the overall volume of research in ASD have dramatically improved, but adolescence and adulthood in ASD remain rather poorly understood. Much of the research and clinical work has centered on young children and those of primary school age; although developmental change is maximal in early years, in this volume we emphasize, as much as possible, that important development continues through adolescence and adulthood while simultaneously emphasizing that adolescents and adults do, of course, have unique and important concerns. While the number of adolescents and adults with autism and related disorders has increased over the last several decades, research on this age group has not correspondingly increased. This has reflected a field-wide focus on very young children and, to some extent, an emphasis on genetics and siblings at-risk. As we discuss subsequently, earlier diagnosis and provision of effective intervention programs has significantly improved prognosis, with more individuals being able, as adults, to lead self-sufficient, independent, or semi-independent lives. Unfortunately, many adolescents and adults, particularly those with higher levels of cognitive ability, lose entitlements and services as they enter adulthood. It is our hope that increased understanding of the unique challenges of this understudied segment of the population of individuals with ASD will improve service quality and, consequently, quality of life for older individuals with ASD. We envision this text to follow on Schopler and Mesibov’s initial book on adulthood, enriching their work with the accrued clinical and scientific understanding of 30 years of research and clinical practice.
What Do We Know (and Not Know) About Autism in Adolescents and Adults?
In the seven decades following Kanner’s initial description of the syndrome of early infantile autism (Kanner, 1943) much progress has been made. We now understand that ASD is an early-emerging, usually lifelong neurodevelopmental disorder that significantly impact social, communicative, cognitive, and adaptive skills and has a strong genetic basis (Rutter, Kim-Cohen, & Maughan, 2006). There is now an extensive literature of peer-reviewed, scientific papers focused on ASD, and multiple studies on adult outcome have been published (for a review, see Howlin, 2013). As Howlin notes, however, these focus almost exclusively on outcome in young adulthood and information on older individuals is limited (Piven & Rabins, 2011), with almost no research focused on aging (Perkins & Friedman, 2012). Of the studies focused on outcome, most have studied individuals with classic ASD, or “Kanner’s” autism and “outcome” is essentially confined largely to early adulthood.
Several factors have contributed to the paucity of research on issues specifically germane to adolescents and adults with ASD. As noted previously, the research literature varies tremendously by age group. Much more work has been done with infants and preschool children than older populations, especially older adults. This disproportionate body of work reflects an increased interest, especially over the last 15 years, in early identification and treatment with the hope of improving long-term outcome (National Research Council, 2001). This goal has been effectively advanced, but a consequence has reduced interest in and research support for work with older populations. Improvements in care for children make likely an increasing proportion of adults on the spectrum with higher levels of independence and self-sufficiency. Historically, it was often presumed that individuals with ASD would require residential, full time, care. It is now recognized that an increasing proportion will require less substantial support, but there has been limited information gather about how to support these individuals in achieving full or semi-independence (Howlin, 2013).
Another complication for treatment research relates to an intrinsic difficulty in research funding. Treatment studies of all kinds (behavioral or pharmacological) are difficult to design and carry out for all age groups. For these reasons, it is often more challenging to procure research funding to complete them. Complexities arise in sample selection, in selecting comparison treatments, and insuring that the sample sizes are sufficiently large (and the treatment effect significantly robust) that robust differences between groups can be detected with confidence. As a practical matter, treatment studies significantly lagged behind other areas in funding and in peer-reviewed publications over the past two decades (see Volkmar, Reichow, & Doehring, 2011 for a discussion of this topic and a review of the range of evidence-based treatments now available). To some extent, this reflects the nature of ASD, in that it is a disorder with a marked range of outcomes and in which services are provided by many different disciplines. Moreover, access to services can vary dramatically within region and country as well as across countries. In the USA, separate service systems are in place for children under 3 years of age, for children from 3 years to young adulthood (e.g., age 21), and for older individuals. In many states, adults with cognitive disabilities are provided services by a state department of developmental disabilities while more cognitively able individuals receive services (if at all) from the mental health and social support systems. In other countries, the system is not as fractionated, although supports for adults are also often lacking (e.g., Stoddart et al., 2013). This heterogeneity in both the disorder itself and in service delivery, render it a complicated landscape for the study of intervention and outcome (Volkmar et al. 2013; Reichow & Volkmar 2011).
Changes in nomenclature and diagnostic taxonomy have also complicated interpretation of research over the years and of identification of older individuals on the autism spectrum (see Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012; Mahjouri & Lord, 2012; Matson, Belva, Horovitz, Kozlowski, & Bamburg, 2012; McPartland, Reichow, & Volkmar, 2011for varying views of the issue). The concept of autism has changed over time with variable emphasis on broader versus narrower definitions of the disorder (i.e., “lumping” versus “splitting”). For the past two decades, the DSM-IV (APA, 1994) and ICD-10 (WHO, 1993) approaches have been virtually identical. The 2013 publication of the DSM-5 (APA, 2013) combines subdiagnoses into an overarching class, “autism spectrum disorder.” The potential for divergent American and International diagnostic systems could result in increased complexity for international research (Rutter, 2011; Tsai, 2012). The potential for significant change in diagnostic assignment further complicates longitudinal, follow-up, and epidemiological study interpretation in particular.
Despite the important limitations of the research literature, it does appear that on balance outcome has, and is continuing, to improve. The gradual change in outcome over time likely reflects early detection and intervention, entitlements to programs, and evidence-based treatments. In her recent review, Howlin (2013) observes that, overall, many adults now are able to achieve independence; she also rightly emphasizes that even for this most able group knowledge remains limited and needs remain high. As she notes in much of the outcome literature (indeed almost entirely so), outcome is assessed in young adulthood with little or no attention to issues of needs after that point in time (or potential changes with age).
For adolescents and young adults, the outcome literature in young adulthood is reasonably extensive. As first noted by Kanner, Rodriguez, and Ashenden (1972), some individuals with autism make noteworthy gains in adolescence while a minority appear to lose skills (Howlin, 2013). In up to 50 % of cases, there are overall gains in communication and adaptive skills as well as reduced symptom severity; this is most likely if overall IQ > 55. For those individuals losing skills in adolescence, the onset of seizure disorder and mental health comorbidities may pose difficulties in adolescence. Transition issues themselves (from school-based to adult-focused vocational and educational programs) can pose major challenges. For example, more individuals with ASD are now entering college and post-secondary programs, resulting in increased opportunities for adult self-sufficiency and higher levels of occupation. As discussed in Chap. 7, this has also posed a challenge to both these individuals and to post-secondary programs in confronting unique special support needs (Stoddart et al., 2013, Wolff, Brown, & Bork, 2009) The relationship between severity of early symptoms of autism and ultimate outcome remains unclear, with at least a few studies suggesting that the severity of social skills impairment is the most significant outcome predictor (Howlin, 2013). This and many other questions regarding changes in outcome remain to be discovered.
Past young adulthood the literature becomes quite sparse. In one review of autism, research studies conducted between 2000 and 2010 only 23 (of an estimated 11,000) were focused on adult services (Shattuck et al., 2012). Despite this recognized paucity of research (Howlin, 2013; Mukaetova-Ladinska, Perry, Baron, & Povey, 2012; Piven & Rabins, 2011), extant evidence suggests that support services/networks can significantly influence outcome and quality of life. There is also some suggestion that more supportive communities are associated with better outcome (e.g., Farley et al., 2009). The data available suggest that most individuals as adults live with parents/family and that a minority is employed. Increased mortality is observed, and this is often related to seizures and accidents in more severely impaired individuals (Gillberg, Billstedt, Sundh, & Gillberg, 2010). Even for the more cognitively able individuals, challenges remain around issues of adaptive skills (Volkmar et al., 1996).
These issues have been investigated through several studies employing survey data. They indicate serious reasons for concern about the status of adults with autism. In one recent report, 480 individuals (adolescent to middle-aged adults) (Stoddart et al., 2013) in the province of Ontario were surveyed, documenting a dramatic shortage of support services and high rates of anxiety (45 %) and depression (27.9 %) with nearly one third of cases indicating they believed they had an undiagnosed mental health condition. Of those receiving medications, over 80 % received more than one medication. Educational attainment was improved relative to historical conditions, with nearly 45 % attending some post-high school educational program (a potential bias for under sampling the less cognitively able was noted). Even for the most able adults, however, limitations in social interaction, in adaptive/daily life skills, and occupational status were striking, with nearly 60 % of cases continuing to live with their families. About one third of the sample had had romantic relationships and in a few cases had been married (sometimes with offspring). Most of the sample reported major limitations in social connections (with many having one or fewer social encounters outside their living situation each month). Although studies based on survey data have notable methodological limitations (e.g., reliance on self or caregiver report both for diagnosis and perceived needs with limited information on early characterization and diagnosis), these provocative data emphasize the critical need for further study.
While overall outcome for many has improved, not all individuals make comparable gains. Sometimes, even in receipt of appropriate intervention, lifetime costs of care remain very high indeed (Ganz, 2007; Knapp, Romeo, & Beecham, 2009). Although most individuals with autism continue to exhibit features of the condition throughout life, the pattern of syndrome expression changes. Those who make gains became motivated to adapt socially and to achieve independence. As detection and intervention have improved, there appears to be a noteworthy shift in outcome with many young adults now able to attend college or to be independent and self-sufficient (Wolff et al., 2009). Sometimes cases no longer meet diagnostic criteria. For example, Seltzer and colleagues examined the issue of current versus lifetime symptoms using the ADI-R and noted improvement in all three domains with nearly half their sample not meeting cut-offs using scoring based on current functioning (Seltzer et al., 2003). Unfortunately this does not always occur and a substantial number of cases remain in need of considerable support throughout their lives. While behavioral difficulties are strongly related to overall cognitive ability, the relationship of severity of autism symptoms to outcome remains incompletely understood (Howlin, 2013). Even among those who display significant progress, difficulties with social interaction and social isolation often persist, with increased risk for mood problems (particularly depression) and anxiety (Howlin, 2013). However extensive data on these issues are lacking or absent. For example, rates of suicidal ideation and para-suicidal behavior have not been studied in ASD. Anxiety and depression may well be exacerbated by social isolation, experiences of bullying, and difficulties with employment in more cognitively able persons. As Howlin notes (2013), appropriate measures of life quality should account for the point of view a person with ASD (see also Billstedt, Gillberg, & Gillberg, 2007, 2011). For example, the frequency and import of social contact may vary according to the social motivation of the individual.
Related posts:
Transition from High School to Adulthood for Adolescents and Young Adults with Autism Spectrum Disorders
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Adaptive Behavior, Life Skills, and Leisure Skills Training for Adolescents and Adults with Autism Spectrum Disorders
Innovative Programming to Support College Students with Autism Spectrum Disorders
Assessment and Treatment Planning in Adults with Autism Spectrum Disorders
A Systematic Review of Psychosocial Interventions for Adults with Autism Spectrum Disorders
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