W. J. McIlvane
The term "behavioral" in this context is intended to distinguish the primary thrust of this research from that of biomedical studies. The term "behavioral" is not limited to research in the tradition of applied behavior analysis or behavior modification, but includes the study of human and animal behavior from a variety of theoretical and conceptual perspectives (e.g., developmental).
Response to NIH Questions
Question 1: What is known and what needs to be learned about the effectiveness of specific types of interventions for specific types of children with autism spectrum disorders?
Although there is no cure, autism is treatable through educational interventions of various types. Early intervention may be particularly effective, presumably because of the plasticity of the neural systems at that time. When to initiate treatment, how intensive such treatment needs to be, and how long to continue it are important research questions to be addressed. It is also clear that persons of all ages and levels of ability can benefit from access to consistently available, proven treatment. It is also known, however, that treatment response is not uniform within the population. Although many children may be brought to the point of near-normal functioning, others are much less responsive to social/behavioral intervention programs.
Question 2: What important outcome variables have been well studied? What additional outcomes need to be considered?
Treatment research has demonstrated the feasibility of fostering significant gains in language, social adjustment, preacademic and academic achievement, and other desirable outcomes. The focus of many studies has been on compliance and on specific academic or preacademic achievements. Promising research has also been done on the acquisition of functional abilities such as changes in spontaneous communication and adaptive, flexible behavior over time which are more meaningful than changes in measurements such as IQ. Assignment to regular classes as the criterion for successful outcome is often meaningless because it reflects local political and legal mandates more than individual child need or status. As in other domains of intervention research, studies are needed to determine the long-term effects of all interventions (particularly early intervention).
Question 3: What are the diagnostic, methodological, and statistical issues that must be addressed in future behavioral and social intervention research?
Research thus far has demonstrated that intervention, and particularly early intervention, offers significant hope for lessening the effects of autism. Many questions remain unanswered, however. Research is needed that uses robust experimental designs to evaluate and compare various approaches to treatment. Methods are needed that (a) involve random assignment to different treatment conditions; (b) use standard intervention protocols that capture a wide range of skills and symptoms, under both laboratory and "real life" situations; (c) make use of outside evaluators who are not invested in the outcome of the research; (d) assure high compliance with the defined treatment protocols to be sure that the intervention as designed is actually and consistently implemented; and (e) use longitudinal designs that evaluate treatment effects, both during the treatment itself, and at set points after the intervention has been accomplished.
The social/behavioral working group felt the need to identify (and perhaps to develop) research methods that would increase the likelihood that families would agree to the participation of their children in research studies. Newer statistical approaches (e.g., individual growth curve analyses) were encouraged. In particular, the working group felt that it was essential to distill a set of outcome measures that would have broad appeal for evaluating treatment approaches. While there was recognition of the significant potential for controversy in this area, it was felt that the problem could be managed and a reasonable set of measures might emerge if a broad constituency was involved in the development effort.
Question 4: What are the aspects of social policy that facilitate or impede research in this area?
Recent developments in social policy, particularly the movement towards inclusion of individuals with autism (as well as other disabilities) in community schools, recreation, employment, and other activities of daily life are very influential on the ability to accomplish high-quality intervention research. While the goals of the inclusion movement were acknowledged and supported, there was considerable agreement that intervention should respond first to the needs of the individual with autism (and his/her family), tailoring the approach to make it possible for each individual to achieve his/her full potential.
Some concern was also expressed that social policy advancement was needed to streamline the process of obtaining human studies approval for intervention studies. Although the committee was clearly aware of and duly concerned about the need to protect individuals with autism and their families in accomplishing research studies, the growing requirements for sometimes numerous, largely redundant reviews by multiple human subject review boards were seen as a possible obstacle in accomplishing certain types of intervention studies.
Recommendations of the Working Group on Social/Behavioral Intervention
- A high priority for future research is studies that relate characteristics of individuals (or group subtypes) to treatment outcomes. Outcomes depend upon the interaction of the characteristics of the individual with the characteristics of the treatment approach. What works for one child may be ineffective or even counterproductive for another. Both categorical and dimensional approaches were discussed and may prove appropriate for defining such characteristics.
- Too little attention has been given to environments and to the interaction of affected persons with aspects of their environments that typically affect child outcome. Particularly needed are studies of parent-child and sibling-sibling interaction over time, and of the effects of physical environments, behavioral modeling, relationships, exposure to speech, and technology such as computers that could contribute to more or less successful outcomes.
- Another priority is research that would define the critical features of effective intervention programs for persons at different ages. At the present time, data have been presented regarding effective intervention "packages." It is critical to determine what aspects of the particular program, including family variables, and what intensity and duration of intervention are needed for successful outcomes at various child/adult ages. Post hoc testing to generate hypotheses for future research for targeting interventions is needed as well as hypothesis-driven prospective studies.
- Collaborative, multisite projects appear necessary to obtain an adequate sample of children and intervention programs to assess subject by treatment interaction (i.e., what works best for which children) and to determine if the treatment can be effective in other treatment sites and samples with different persons implementing them.
- As principles of effective treatment are increasingly well defined, research is needed to ascertain how best to encourage transfer of that learning for individual children (generalization) from clinic to home, home to school, school to community.
- It is clear that all persons with autism are not currently receiving services based on the most advanced knowledge available. Mechanisms should be devised to expedite rapid transfer of research into practice.
- There was agreement that maximally effective intervention would have to be a multidisciplinary effort. Without diminishing the value of well-focused individual research initiatives, high priority was accorded to research projects that could demonstrate truly effective, productive interdisciplinary interactions. For example, although methods derived from applied behavior analysis were acknowledged as especially effective in treating autism, it was thought that incorporating perspectives from developmental psychology and neuropsychology, among other disciplines, might enhance the effectiveness and acceptability of treatment methodologies. The importance of so-called "state" variables (nutritional status, drug status, etc.) was also deemed critical, and research to document state-treatment variable interactions was recommended. Implicit in these recommendations is the need for an organizing framework that is broad enough to incorporate inputs from the many disciplines that can make a helpful contribution to solving the problems of autism spectrum disorders.
- If early intervention does substantially alter growth trajectories, as it appears, follow-up research will be needed to confirm that intervention does in fact produce lasting beneficial changes that would not be achievable without that intervention. Studies should be designed to ensure that the gains are not an artifact of subject selection or maturation. Some studies may incorporate imaging or other techniques that demonstrate potential biological (i.e., evidence of neuroplasticity) as well as behavioral change, particularly as higher-speed imaging techniques become available.
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