Quality Activities in Center-Based Programs for Adults with Autism

Moving from Nonmeaningful to Meaningful

Dennis H. Reid, Marsha B. Parsons

• Publisher: Academic Press
• Year: 2016
• ISBN:
  9780128121672
• Topic: Psychologie
• Subtopic: Psychologie du développement

Quality Activities in Center-Based Programs for Adults with Autism: Moving from Nonmeaningful to Meaningful describes what constitutes meaningful versus nonpurposeful activities for adults with autism and other severe disabilities in a classroom or center-based program. Then this step-by-step guide presents an evidence-based process for changing nonpurposeful activities, using behavior analytic research and application. The goal is to help ensure adults with autism and other severe disabilities are engaged in week-day activities that truly enhance their income-earning capacity, independence with life skills, day-to-day enjoyment, and overall dignity.

• Summarizes the existing state of activities for adults with autism and severe disabilities in center-based programs
• Covers how to empirically assess and monitor participation in meaningful activities
• Details evidence-based procedures for changing existing activities to become more meaningful
• Provides maintenance strategies for ensuring activities continue to be meaningful on a daily basis

Chapter 1

Historical Challenges and Needed Improvements in Center-Based Services for Adults With Autism

Abstract

Applied behavior analysis (ABA) provides an evidence-based means for helping people with autism live to their fullest potential. To date, the majority of ABA services have been provided for children who have autism. Many adults with autism, and particularly those on the severe end of the spectrum, attend center-based programs as part of the general adult service sector for people with developmental disabilities. Although adult center-based programs provide necessary supports, they are often lacking in ABA services and have received criticism due to frequent provision of activities that do little to promote productive, independent, or enjoyable adult lifestyles. This chapter summarizes historical concerns with center-based programs. Subsequently an approach based on ABA research and application is introduced that practitioners can use to move such programs from a traditional focus on nonmeaningful activities to more meaningful and purposeful experiences for center participants.

Keywords

Adults with autism; center-based services; meaningful day activities

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 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.

Purpose and Organization of Quality Activities in Center-Based Programs for Adults With Autism

The purpose of this manual is to describe how an evidence-based approach stemming from ABA research and application can be used to change the focus of activities in center-based programs for adults with autism and other developmental disabilities from nonmeaningful to meaningful. It is primarily intended for practitioners such as behavior analysts and others who work with center-based programs and are interested in ensuring such programs provide therapeutic, productive, and enjoyable supports and services for the programs’ consumers. It is also intended for executive and supervisory personnel associated with center-based programs who are likewise interested in providing truly meaningful day services.

Throughout this book, the target population of reference within center-based programs is adults with autism. However, the information is relevant for adults with other developmental disabilities as well because center-based programs usually serve people with all kinds of disabilities as noted previously. Additionally, the content focuses heavily on adults with autism on the severe end of the spectrum. The latter individuals often make up the largest component of center-based participants along with adults who have other types of severe disabilities relative to people with more mild challenges as also referred to earlier.

Because the intended readership of this book is primarily practitioners, initially the role of behavior analysts and other clinicians in center-based programs will be summarized in regard to how the meaningfulness of the programs’ activities (and lack thereof) affects fulfilling that role. Chapter 2, Current Professional Consensus Regarding Meaningful Activities, then describes the current professional consensus regarding what constitutes more-to-less meaningful day supports for adults with developmental disabilities including autism. Next, an evidence-based protocol that practitioners can use to help move a center-based program’s activities from less to more meaningful is introduced in Chapter 3, An Evidence-Based Protocol for Improving the Meaningful Utility of Center-Based Activities. Subsequent chapters then describe in detail how to use the protocol, including specification of criteria for meaningful versus nonmeaningful activities that coincide with the existing professional consensus (see chapter: Specifying Criteria for Meaningful versus Nonmeaningful Activities), systematically assessing adult participation in meaningful activities using the established criteria (see chapter: Assessing Meaningful versus Nonmeaningful Task Participation), working with center staff to initiate meaningful activity participation (see chapter: A Staff Training and Supervision Plan to Increase Meaningful Activities), and maintaining such participation over time (see chapter: Maintaining Meaningful Activity Participation).

The Role of Behavior Analysts and Other Practitioners Regarding Activities Provided in Center-Based Programs

Earlier it was noted that typically services for adults with autism involve much less ABA than schools and related service settings for children who have autism. A primary reason for the reduced amount of ABA in the adult sector is there are far fewer behavior analysts working in adult services than in agencies for children with autism. This is particularly the case in center-based day programs for adults. There is, however, a small but growing trend to provide more intensive ABA services in adult, center-based programs in several parts of the United States. This trend has been due in large part to recognition among personnel in ABA programs for children with autism as well as parents of children who receive ABA services that there is a need for improved services as the children they support reach adulthood and leave school. A number of ABA programs for children have begun to expand their operations to include adults in attempts to provide improved services, and the latter services are provided under the direction of behavior analysts. Nonetheless, most adult day programs around the country have relatively minimal involvement of behavior analysts.

When behavior analysts and other clinical practitioners do work with adult service agencies, they are often employed on a part-time contractual basis with the primary responsibility of working with agency consumers who display challenging behavior. Among those agencies that employ behavior analysts as part of the agencies’ regular full-time staff contingent, the primary duty of the behavior analysts and related clinicians also usually involves addressing challenging behavior. In both situations the behavior analysts typically assess the nature of the problem behavior and what appears to occasion and maintain it, develop intervention plans, and then work with staff to carry out the plans. What is frequently missing in the work of practitioners in this regard is a focus on the environmental context in which their behavior support plans are to be implemented.

From the perspective of center-based activities, the environmental context pertains to what the adults with autism are doing while attending the center. If they are doing the types of nonmeaningful activities summarized earlier, then practitioners are in essence attempting to treat problem behavior in a problem environment, which can seriously undermine treatment success (Reid, Parsons, & Rotholz, 2015, Chapter 8). For example, if individuals are not engaging in meaningful and preferred activities, they are often likely to display problem behavior to escape from these activities and/or access more preferred activities.

Attempting to overcome challenging behavior among adults with autism in center-based settings that provide nonmeaningful activities is essentially trying to treat problem behavior in a problem environment.

To illustrate further, a relatively common behavioral intervention for challenging behavior is for staff to interrupt antecedents to such behavior and redirect an individual’s behavior to a more desirable activity. If there is no ongoing activity to which the individual can be redirected—other than sitting or aimlessly wandering around—then the individual is likely to resume whatever was previously ongoing that then leads to problem behavior.

Sometimes practitioners also have the responsibility of designing and overseeing teaching programs implemented by direct support staff in center-based programs for adults. The environmental context is likewise important in this situation. Specifically, there is little reason to train and otherwise wor...