Historical Challenges and Needed Improvements in Center-Based Services for Adults With Autism
Concerns over the disability of autism have become increasingly common among families, human service providers, and to a large degree, society in general. Although reports vary on the number of children born with autism each year, there is ample evidence that this disability has been on the rise in recent history and is affecting an increasing number of people. It is conservatively estimated that 1% of the population has an autism spectrum disorder (Neumann, Meyer, & Buchanan, 2011).
As autism has become increasingly prevalent there has been a strong demand for evidence-based strategies to help individuals who have this disability. Evidence-based strategies are developed through scientific research that demonstrates their effectiveness, initially through highly controlled investigations in experimental settings and subsequently through systematic applications in places where people typically live, work, and play. Evidence-based strategies are desired because they have demonstrated effectiveness such that they are more likely to have the desired outcome when used relative to interventions that have no underlying scientific support. Reliance on evidence-based strategies also reduces the likelihood that time will be wasted on purported treatment procedures that have minimal or no probability of success.
To date, the vast majority of evidence-based approaches for helping people cope with and even overcome the challenges of autism are derived from applied behavior analysis or ABA (Smith, McAdam, & Napolitano, 2007). ABA is based on well-researched and established principles of learning. Treatment interventions stemming from ABA’s underlying science of human behavior have helped thousands of people with autism learn skills to enhance their personal independence and
Quality Activities in Center-Based Programs for Adults with Autism. DOI: http://dx.doi.org/10.1016/B978-0-12-809409-9.00001-0
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overcome challenging behavior (Walsh, 2011). Many of these individuals have also benefitted from ABA to the point of displaying no significant indications of the disability.
Although the benefits of ABA for individuals who have autism are now well-established, the vast majority of ABA research and application has involved children, with much less attention directed to adults with autism. The focus within ABA on children has been due in large part to the substantial body of evidence demonstrating that the most beneficial outcomes in treating autism occur if intervention begins during the first years of a child’s life. However, children with autism do grow up, and many continue to have challenges in adulthood for which specialized intervention is also necessary.
The needs of adults with autism present some special issues relative to children who have this disability, just like adults in general have different issues than children. To illustrate, the primary support settings outside of the family for children with autism are schools. Schools are designed to prepare children, including those with autism, for their future lives as adults so they will enjoy a productive and desirable quality of life. In contrast, the purpose of support settings for adults with autism is to maximize their current life quality (though preparation for the future in terms of continued learning is still relevant).
There is another issue that is relevant for adults with autism relative to children. All children in the United States are legally entitled to a free education. Children with special needs such as autism are also entitled to a free and appropriate education as mandated by the federal Individuals with Disabilities Education Act (Chezan, Wolfe, & Drasgow, 2015). The appropriate aspect of their education includes obtaining evidence-based services specifically for a type of disability, which in the case of autism has increasingly meant access to ABA. In adulthood, however, there are fewer entitlements in general and fewer still for receiving ABA services in particular. Correspondingly, the number of adults with autism who receive specialized ABA services is far less than children in most parts of the United States.
When students with autism finish school and are in need of continued supports and services, they typically enter the general adult service system for people with developmental disabilities. Within the adult service sector, agencies usually serve people with all kinds of developmental disabilities including, e.g., intellectual disabilities, physical disabilities, intellectual disabilities with mental health issues, and autism. Adult services are primarily state- and federally funded and to a lesser degree privately financed. These types of agencies provide a variety of necessary and important services such as housing and related residential supports, adult education, vocational training and job support, and access to supervised daily activities. However, there are also some serious concerns with aspects of the adult service system for people with developmental disabilities.
A primary concern is the impact of adult service agencies on the daily quality of life among people with developmental disabilities, including autism. This is particularly the case for adults on the severe end of the spectrum of autism disorders. Most of these individuals receive their weekday supports and services in congregate or center- based settings (e.g., day habilitation or activity centers, sheltered workshops) with other people who have various types of severe disabilities (Wehman, 2011). A long-standing concern with many center-based programs for adults with developmental disabilities is that individuals spend their time doing little if anything to help them lead productive, meaningful, or enjoyable adult lives (Cimera, 2011; Wehman, 2011).
Although there are certainly notable exceptions, adults with autism and other disabilities in center-based programs are often observed to spend major portions of their days simply sitting or wandering around with no constructive purpose (Reid, 2015b). Those who are engaged in activities are frequently doing things that are designed for young children (e.g., coloring in children’s coloring books, stringing toy beads, putting pegs in pegboards, or manipulating other preschool-type materials) that usually have little if any impact on helping them function as adults (Reid, Parsons, & Jensen, in press). Others are provided with activities and materials with the apparent purpose of simply keeping them busy, such as repeatedly putting the same puzzle together or looking at the same magazine (Reid, 2015b).
The types of activities just noted that are prevalent in center-based programs are considered in many ways to be “life wasting” (Reid, 2015b). The activities do not help individuals with developmental disabilities such as autism learn how to live as adults the way most people live. They typically do not learn necessary skills to maximize their independence, function effectively in society, or have sufficiently varied experiences to develop different preferences that can enhance their day-to-day enjoyment. Repeatedly engaging in meaningless activities can also result in adults with autism losing functional skills previously learned because of insufficient opportunities to use those skills. In essence, many center-based programs do not help adults with autism develop personal control over their lives the way most adults do, which can seriously impede a desirable quality of life.
A longstanding concern with center-based programs is many of the activities they provide do little if anything to promote typical, meaningful lifestyles for adults with autism and other severe disabilities.
Commensurate with concerns over the utility of common center-based activities for adults with developmental disabilities has been a relatively small but significant amount of behavior analytic research on ways to improve center-based services (see Reid et al., in press, for a recent summary of the research). Such research has demonstrated how to identify activities that have been validated as being truly meaningful for adults with developmental disabilities. The research has also demonstrated systematic ways of working with human service staff in center-based programs to help them provide more meaningful activities. Although to date the strategies stemming from the research have not been applied on a widespread basis within many agencies, they represent an evidence-based template for helping such programs move from a focus on nonpurposeful or meaningless activities to more purposeful and functional.