The Future of Applied Behavior Analysis in Autism Spectrum Disorder: New Opportunities for Improving Lives (page 4)
The articles in this special issue make clear that Applied Behavior Analysis (ABA) is arguably the most powerful tool that exists for improving the lives of people with ASD and their families, helping them to reach meaningful goals and a better future. As ABA practitioners and researchers have extended their efforts into a host of real-life settings, barriers to further success have become increasingly apparent. However, these same barriers suggest many new opportunities to collaborate across disciplines, to change systems, and to rethink our goals and priorities (Carr, 2007). In doing so, we are likely to enhance the impact of ABA even further and the wellbeing of people with ASD and their families even more. In this concluding article, we discuss six emerging themes that will shape future efforts in ABA and help define how we think about and address ASD. As co-editors, we have chosen to emphasize the big-picture accomplishments of ABA and how they relate to the ultimate goals most cherished by those with ASD and their families.
Not All People with ASD are the Same
Some people with autism become professors of computer science. Others remain nonverbal, nonsocial and totally dependent on others for their survival. These differences are the reason why autism is referred to as a spectrum disorder. Increasingly, researchers have been suggesting that the idea that there is a best treatment for autism is counterproductive and misleading. The reality is that there are many different subgroups, each of whom may respond optimally to a particular form of treatment (Rogers & Vismara, 2008). To illustrate, some data show that young children who initially display more toy play and less social avoidance have far better outcomes following ABA than those who have problems in these areas (Sherer & Schreibman, 2005).
The remarkable heterogeneity displayed by people with autism calls into question the idea that randomized clinical trials (RCTs) should, at this time in the development of the field, be considered the gold standard for evaluating whether a specific treatment has merit. In an RCT, children are randomly assigned to either an experimental group that receives treatment or a control group that does not receive the treatment in question. Should the experimental group outperform the control group, one concludes that the treatment has merit and can be used successfully with children who have autism. However, given the heterogeneity just noted, this conclusion begs the question, “Which children?” In fact, RCTs simply show that the average or mean score for the entire experimental group is better than that for the entire control group. We learn nothing about how any given child has performed. Yet, in clinical practice what we most want to know is how best to help a specific child. Indeed, when data from the experimental group are examined on a case-by-case basis, one commonly finds that the treatment had little effect or even a negative effect on some children, while improving many others. This type of finding highlights the urgency of identifying exactly how different child characteristics might call for different treatment approaches. ABA research methodology is uniquely positioned to help distinguish among different subgroups of children because of its focus on evaluating treatment effects at the level of the individual rather than the group (Horner, Carr, Halle, McGee, Odom, & Wolery, 2005). As such, for any given treatment, one can readily detect responders and nonresponders, and this information, in turn, can be used to build profiles of important child characteristics related to outcome. Thus, ABA methodology could prove invaluable in facilitating the process of subgroup identification so that parents and practitioners are able to choose treatment options in a more rational and systematic manner than is currently the case.
The heterogeneity seen in people with autism also raises the question of whether everyone so labeled needs treatment. Many advocates feel that the focus on treatment, cause and cure is insulting. They see themselves as a “neurological minority” and note that other minorities who are defined, for example, on the basis of race do not provoke discussions of treatment and cure. To return to our initial example, does a successful professor of computer science really need to be treated and cured? More likely, for the professor and many others with success stories, the issue is one of acceptance and support. Here, the goal of ABA, should such intervention be requested, must be to help create effective support systems that ensure continued success—a topic that is addressed later in this article. Of course, many people with autism are not as fortunate as the computer science professor and can benefit from respectful and well-thought-out treatment that promotes a good quality of life, an issue that we take up next.
A Lifespan Approach is Essential
Following ABA intervention, some children with autism recover (Granpeesheh, 2008; Granpeesheh, Tarbox, Dixon, & Herbert, 2008). Many, however, do not. For them and their families, autism will be a lifelong disability. In this respect, autism is no different than chronic medical problems such as diabetes and asthma. These conditions may not be “curable,” but with appropriate management and support, people who suffer from them can have a good quality of life. This thinking has begun to permeate the field of autism as well. Specifically, systematic and carefully constructed support can create meaningful life options for people with ASD (Carr & Pratt, 2007).
In the absence of recovery, the focus shifts to the issue of quality of life (QOL). What is QOL? It is a multidimensional construct that includes issues related to material well-being, health and safety, social well-being, emotional well-being, leisure and recreation, and autonomy. Individuals who experience a poor QOL make a poor adjustment to society and frequently display problem behavior. Therefore, QOL represents a challenge and an opportunity for ABA to make a contribution over the entire lifespan of people with ASD. In fact, each dimension of QOL suggests meaningful goals that can be pursued and achieved via ABA, as individuals move from one stage of life to the next.
Consider material well-being. By teaching meaningful job skills, we can help adults with autism to earn money to pay for basic necessities, creature comforts and transportation to enjoyable community settings. By teaching personal safety skills, we can minimize the risk of injury. Health and wellness training in hygienic practices reduces the risk of illness. Social well-being can be promoted by addressing skill deficits so that individuals gain acceptance into community, ethnic and religious groups, thereby replacing isolation with friendships. Emotional well-being can be enhanced by focusing on building close relationships within the family and, when appropriate, dating and romantic relationships. Leisure and recreation can be addressed by encouraging interests in hobbies, sports, entertainment and vacations. Autonomy is enhanced by building self-sufficiency in daily routines and supporting significant choice-making with respect to living arrangements, vocation, social relationships and religious preference. These goals, though complex in nature and logistically challenging, provide multiple opportunities for ABA to expand its reach across the lifespan in ways that are universally recognized as constituting the core of what it means to have a good life.
Biomedical Issues are Important
For decades, the biomedical and behavioral fields have been proceeding on parallel, non-interactive tracks due to the fact that scientists in these two fields have greatly different training, use different jargon to describe their efforts and publish in different journals. This situation has resulted in many lost opportunities to better understand ASD and use that understanding to enhance treatment effectiveness. Recently, there has been an emerging recognition that biomedical and behavioral factors can be successfully integrated in a comprehensive model (Carr & Herbert, 2008). This model is sensitive to the fact that parents of children with ASD often report that, following biomedical intervention, their children show improved behavioral functioning, in addition to exhibiting gains in health. Overwhelmingly, however, behavioral improvements are reported in the form of anecdotes and case studies, rather than as systematic, organized research efforts. This situation has led many mainstream scientists to minimize or even reject the importance of these improvements. The remedy for this problem would be to produce a database that is methodologically and empirically compelling, and that is where the field must head next.
People with ASD have long been known to show substantial rates of both chronic and acute medical conditions. Disorders related to seizures, sleep patterns, gastrointestinal symptoms, metabolic problems, hormonal imbalances, infection, allergies and immunological challenges have all been described in the biomedical literature on ASD (Bauman, 2006). A focus on physical illness and biological issues provides a critical opportunity for achieving one of the major goals of the field: merging biomedical and behavioral approaches into an integrated whole so that the synergy between them results in more effective treatments (Lakin & Turnbull, 2005).
The negative sequelae of medical problems include pain and discomfort, irritability, fatigue, anxiety and poor attention span. In the behavioral literature, these factors are referred to as setting events (Carr & Smith, 1995). The presence of these negative setting events constitutes a powerful barrier to the success of ABA programs because they often exacerbate problem behavior (Carr & Owen- DeSchryver, 2007) and disrupt efforts at teaching social, communicative and academic skills (Granpeesheh, 2006). Removing disruptive setting events by combining biomedical and behavioral intervention can be a useful strategy in enhancing individual functioning (e.g., Carr, Smith, Giacin, Whelan, & Pancari, 2003); however, systematic work within this paradigm is only now beginning.
What are some of the future opportunities within this new paradigm? First, biomedical mitigation of physiological conditions and their associated negative setting events could accelerate skill acquisition through ABA by removing a potent barrier to learning. Second, behaviorists could facilitate medical diagnosis by desensitizing individuals with ASD to (often feared) physical and dental examinations, as well as by teaching them to identify and communicate physical symptoms they may be experiencing. Third, compliance with prescribed medical regimens (e.g., special diets, pills, physical therapy) could be promoted through the use of reinforcement strategies. Fourth, the impact of biomedical intervention on behavior, cognition and affect could be systematically evaluated with behavioral research methodology and design. Finally, the negative impact of chronic medical conditions could be attenuated through behavioral procedures that restructure an individual’s living and learning environments, thereby generating gains in QOL. In sum, a world of possibilities opens up when behavioral and biomedical scientists and practitioners work together.
ASD Involves the Whole Family
Why does home-based ABA intervention not always work as hoped? Why do we still see children with problem behavior and families with poor QOL years after the implementation of home-based intervention? The answer is that parent training (teaching parents how to teach their children), a traditional focus of the field, is not enough. What parents seek is support in addition to training. By support, we mean meeting the psychological, social and practical needs of the whole family, not just the person with ASD.
Parenting a child with autism can be lonely, stressful and physically exhausting. Therefore, it is not surprising that parents of children with ASD are more likely to have marital adjustment problems and less marital satisfaction than parents of children without ASD (Rodrigue, Morgan, & Geffken, 1990). Mothers of children with ASD perceive less availability of emotional support and friendships than both mothers of typically developing children and children with mental retardation (Weiss, 2002). In addition, mothers of children with autism experience more symptoms of depression than both mothers of children with mental retardation and mothers of typically developing children (Weiss, 2002), and they are highly likely to have stress scores in the clinically significant range (Tomanik, Harris, & Hawkins, 2004). Finally, a lack of personal resources (poverty) is also common in families of children with ASD (Park, Turnbull, & Turnbull, 2002). This picture suggests that it is naïve to assume that a sole focus on parent training in ABA techniques without attending to broader family issues will produce uniform success.
Parents experiencing relationship problems, isolation, depression, stress and financial concerns have a lot on their minds. They may be unable to implement ABA in a consistent fashion, accurately observe changes in their child’s behavior that necessitate remediation or marshal the motivation to carry out detailed intervention programs. The result is that ABA is less successful than one might anticipate. The solution is to embed ABA within a family systems perspective that incorporates, as appropriate, cognitive-behavior therapy for emotional difficulties, marital therapy, the building of social support networks that include sibling and parent groups, mindfulness training for stress, and advocacy to obtain basic financial and material resources. These and other strategies create a family environment in which factors that disrupt ABA efforts are addressed so that all members of the family can better concentrate on effectively supporting their loved one with ASD. Systematically blending together all of these elements represents a challenge and an important new direction for the field.
The Need to Create Effective Support Systems
Good QOL is only possible when solid support systems are in place. Thus, schools that are hostile to inclusion, workplaces that are not open to employing people with disabilities and communities that are unwelcoming of those who are “different” constitute systems in which even the most competent ABA interventions are bound to fail. Such rejection guarantees poor QOL. To address this problem, ABA practitioners need to move beyond the analysis of individual behavior, a traditional approach, and move toward the analysis of systems, a future-oriented goal that will serve people with ASD well.
Models of systems analysis can be used to identify the barriers that impede successful ABA outcomes (Knoster, Villa, & Thousand, 2000). Thus, prior to and during the course of intervention, ABA practitioners need to determine: (a) whether key players in the system (parents, teachers, job coaches, service providers) share the same values and goals so that they do not undermine one another’s efforts; (b) whether all relevant people have the necessary skills to implement state-of-the-art interventions; (c) whether the right incentives exist to encourage everyone to sustain their supportive roles for the long periods of time needed to produce significant changes in the person with ASD; (d) whether critical resources—time availability, finances, materials, transportation access—exist to build and promote a meaningful lifestyle; and (e) whether the roles and responsibilities of all relevant parties have been spelled out so that intervention can proceed smoothly and efficiently. Careful systems analysis helps identify obstacles proactively so that the requisite steps can be taken to repair the system and allow ABA interventions to achieve their full effects.
Models of group action planning (Turnbull & Turnbull, 1996) are a good example of how systems analysis recognizes that families function in complex environments in which supported employment, inclusive schools, supported living, friendships and community participation all play a role in determining an individual’s ultimate QOL. For ABA to reach its full potential, all relevant support people from these multiple environments must be brought together in a group (hence, the term group action planning) to coordinate efforts, formulate goals, problem solve and reinforce each other’s successes. In this sense, the future of ABA consists of moving beyond a sole focus on individual intervention to a much broader focus that includes nontraditional sources of support. In the community, that means we must, as appropriate, train police, clergy, doctors/dentists, emergency room staff, college personnel and local business people to understand ASD and to know how to respond appropriately. Systems change is a big job, but one that is necessary to ensure inclusion rather than segregation, acceptance rather than rejection and satisfaction rather than despair.
Knowledge Dissemination and Accessibility of Services
The emphasis on systems change, just described, highlights two interconnected areas of increasing concern for our field: poor dissemination of current knowledge and lack of accessibility to appropriate and meaningful services.
Sadly, despite 50 years of research demonstrating that ABA is a powerful evidence-based practice, much of what we know about effective treatment is not being widely disseminated. Although ABA has been endorsed by the Office of the United States Surgeon General as the most effective treatment for ASD, many people remain confused as to what constitutes an ABA program. Thus, families affected by autism are often unaware that numerous forms of intervention, ranging from Discrete Trial Training to Pivotal Response Training to Incidental Teaching to Natural Environment Training, all fall under the larger umbrella of ABA. Typically, this critical body of knowledge is the exclusive purview of professionals with higher education, many of whom hold board certification in behavior analysis (i.e., the BCBA credential). It is clear that much more needs to be done to get this information to those who need it most—individuals with autism and their families.
Clearly, dissemination of knowledge will be one of the most important service challenges over the coming decade. If we are to meet the increasing demand for effective treatment, personnel and financial resources must be allocated to the efficient dissemination of ABA-based treatment protocols. This dissemination must include a formal system of training for teachers, family members and service providers associated with an array of related professions (e.g., speech-language pathology, physical/occupational therapy, medicine, school and clinical psychology). Novel forms of knowledge dissemination will need to be expanded and developed; for example, trainer-of-trainers models that help build infrastructure rapidly within an organization, school district or state. Also, teaching family members basic ABA principles can be useful because they, in turn, can disseminate this information to posbabysitters, neighbors and home-based treatment aides they may hire to supplement more formal services they are receiving.
Successful dissemination of knowledge does not guarantee accessibility to appropriate and meaningful services. Our society is faced with an enormous demand for ABA training and treatment, and a critical shortage of qualified personnel, resulting in minimal accessibility to competent service providers, whether they be in the educational, psychological or medical fields. As a result, service providers, facing long waiting lists of families in need, find themselves cutting corners and reducing training to meet the high demand. This situation, coupled with the increasing incidence of autism, initiates a negative cascade reflected in minimal training, inadequate quality of treatment, and poor outcomes that undermine confidence in and credibility of practitioners.
Technology can be part of the solution to accessibility issues. For example, the Center for Autism and Related Disorders has developed a web-based SKILLS program (Shaping Knowledge through Individualized Life Learning Systems) that can be accessed on their Web site (www.centerforautism.com). This three-part program consists of an e-learning training program, an assessment of a child’s skills and deficits, and a corresponding curriculum of content to teach. The e-learning component provides teacher training in the basic elements of behavior analysis and its applications to the treatment of autism. The assessment portion of the program, the SKILLS Index, is a comprehensive questionnaire that evaluates the child’s skills in the areas of Language, Adaptive, Motor, Academic, Play, Social, Cognitive and Executive Functioning, and generates an individual profile. The child’s profile is used to build a comprehensive curriculum that provides specific instructional goals, techniques to teach each goal and video clips demonstrating the teaching of each goal using behavioral applications.
Of course, technology-based programs, such as the one just described, cannot replace the need to provide hands-on, high-quality training to large numbers of teachers and other professionals in order to increase accessibility to services and make it possible for every child to receive treatment and gain the most benefit at the earliest age possible. Behavioral treatment of autism is a complicated process that must be monitored regularly by experienced and competent professionals.
Finally, there is the issue of cost and accessibility. It is likely that as we train large numbers of teachers and other professionals to provide quality ABA services, the overall cost of these services will decline. Thus, investment in training not only ensures higher quality services, but also engenders greater competition among providers, encouraging innovation and, ultimately, cost control. In this manner, we can address a critical goal for the future: accessibility to affordable, state of-the-art ABA for the ever-increasing numbers of families who desperately need it. The future of ABA will involve collaboration across disciplines, systems change, and rethinking our goals and priorities. This process will reinvigorate the field and make ABA both different and better. The opportunities for building a good life for people with autism and their families have never been greater.
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About the Authors
Edward Carr, Ph.D., is Leading Professor, Department of Psychology, State University of New York at Stony Brook, and serves on the ASA Panel of Professional Advisors.
Doreen Granpe sheh, Ph.D., is the Founder and Executive Director of the Center for Autism and Related Disorders (CARD) and the Founder and President of the Board of Autism Care and Treatment Today (ACT Today). She is also the First Vice-Chair of the ASA Board of Directors.
Lee Grossman is President and CEO of the Autism Society of America.
Reprinted with the permission of the Autism Society.
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