Autism

Biography

Biography: Peter F. Gerhardt

Abstract

Over the past two decades there has been a dramatic increase in the prevalence of autism spectrum disorder (ASD) diagnoses. The reasons behind this increase remain unclear, though changes in diagnostic criteria and diagnostic substitution appear to play significant roles. Independent of causal factors, the fact remains that there are increasing numbers of adults with ASD leaving, or have already left, school and entering the complex world of adulthood and the system of adult services. Unfortunately, the need for these services far exceeds their availability. Just as troubling, however, is that we know little about the needs of aging adults on the spectrum. This dearth of information on adults has resulted in Shatttuck, et al, (2012) describing the research basis for adult services and supports as a field of inquiry that is underdeveloped and relatively unformed. The result, unfortunately, is a growing cohort of adults with ASD and their families in programmatic, financial, and personal limbo. Adulthood is, almost by definition, a complex state of being. Adult life presents challenges in such diverse areas as employment, relationships and sexuality, transportation, advocacy, social interaction, healthcare management, leisure, and independent living which, collectively, contribute to an individually determined quality-of-life. And despite quality-of-life being a significant focus in the field of adults with intellectual disabilities for over 3 decades, the outcomes have been decidedly mixed. As noted by Brown, Hatton, & Erickson (2013), “Moving from quality of life as an implicit or explicit goal to quality of life as a helpful concept; and set of practical strategies have been a strong theme within the rich panoply of quality of life work in the field of intellectual disabilities”. This work has been considerably more challenging than might be expected.” (p. 316). Since the early 1970s interventions based upon the principles of ABA have grown increasingly sophisticated, naturalistic, socially valid, and used to improve the lives of individuals as diverse as survivors of traumatic brain injury to visitors to Disneyland as they are prompted, via text messaging, to efficiently move around the park. As noted by Gerhardt and Wiess, (2011) ABA-based interventions are the most robustly verified treatment for individuals with ASDs. For adults with autism, unfortunately, beyond intervention for challenging behavior (e.g., Sturmey, Seiverling & Ward-Horner, 2008) and interventions targeting specific social (e.g., Weiss, 2013), vocational (e.g., Lattimore, Parsons, & Reid, 2009), academic, (e.g., Burton, Anderson, Prater, & Dyches, 2013) or functional living skills (Smith, Ayres, Mechling, & Smith, 2013) there is a limited body of behavior analytic research. In some skill domains this may not represent a significant challenge. For example, discrimination training provided a young child with ASD (e.g., boy versus girl) is potentially different for older individuals only in the stimuli presented (e.g., men’s room versus woman’s room) or gradations of difference between stimuli (e.g., health versus unhealthy snacking) than in the parameters of the intervention protocol. However, in areas such as community living, personal safety, sexuality, self-advocacy, travel training, health/mental health management, leisure, and quality of life the research base is limited to, in some cases, non-existent. So while there is a growing body descriptive studies or studies using archival data focusing outcomes of adults with ASD intervention studies are sorely lacking. While the absence of an extensive body of intervention research is troubling, it is not wholly unexpected. Despite an accumulated record of over 35 years of behavior analytic research there continues, at least in some quarters, to be a belief that interventions based upon the principles of ABA are ineffective with, or inapplicable to, individuals with ASD beyond childhood. This is probably due, in part, to the prevalent misconception that “ABA” is synonymous with both early intervention and discrete trail instruction (DTI) and, therefore, of little use with older individuals. Perhaps this lack of research may, in part, be that school age children with ASD can readily be found in school and so provide easy access to researchers while adults with ASD may be without services and, therefore beyond the reach of researchers. Whatever the reasonthis lack of research is troublesome butfar from insurmountable given that there are no “age restrictions” to the application of behavioral analytic principles and related interventions. Given that, the question then becomes: “What do we do with these principles to help improve outcomes for adults with ASD?” The focus of this workshop will be on behavior analytic intervention in three particular areas with direct relevance to quality of life across adulthood. These are the provision, and in some cases, development, of evidence-based practices in adaptive behavior and community living, managing risk and personal safety, and social competence. Obviously, there are a number of other areas that could, and perhaps should, be discussed but for which time will not allow. For example, leisure and recreation could have been included given how little we know about developing age-referenced leisure skills in adults and how important they are to most typical adults across the lifespan. Or issues related to sexuality, sexuality education, and that avoidance of abuse might arguably have taken precedence here. Given our time constraints, however, we will have to settle for the fact that adulthood is a complex, rewarding, challenging, enjoyable and frustrating time of life that for many adults with ASD is, sadly, neither rewarding nor all that enjoyable. “The mass of men lead lives of quiet desperation.” wrote Henry David Thoreau in “Walden”. With a large cohort of young adults with ASD rapidly approaching middle age and soon thereafter, hitting their proverbial golden years, the fear is that Thoreau may be proved right. The adult service system, as it currently stands, is unprepared to meet the needs of this diverse and complex population. According to Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services, “We are facing a crisis of money and work force. The cohort of people who will need services including aging baby boomers is growing much faster than the cohort of working-age adults that provide care.”