Lord, C., Wagner, A., Rogers, S., Szatmari, P., Aman, M., Charman, T., Dawson, G., Durand, V.M., Grossman, L., Guthrie, D., Harris, S., Kasari, C., Marcus, L., Murphy, S., Odom, S., Pickles, A., Scahill, L., Shaw, E., Siegel, B., Sigman, M., Stone, W., Smith, T., and P. Yoder (2005). Challenges in evaluating psychosocial interventions for Autistic Spectrum Disorders. Journal of Autism and Developmental Disorders. 35 (6): 695-711.

This article summarizes the discussions held at a September 2002 State of the Science meeting sponsored by the National Institutes of Health on evaluating psychosocial interventions for individuals on the Autism Spectrum. That means research into the effectiveness of psychological and education methods of treating symptoms of Autism and improving quality of life, as opposed to biomedical research into genetic and environmental causes and potential biological "cures." The report was co-authored by all 23 participants in the meeting, who came from disciplines ranging from psychology to education to parent advocacy. The discussion was almost exclusively limited to early interventions for the most basic symptoms of classic Autism - for example, the Lovaas method of Applied Behavioral Analysis. There was no mention in the report of social skills training or other therapies that might be beneficial across the lifespan for individuals on the Spectrum with more complex challenges. Nevertheless, the panel's recommendations seem to have some implications for the field of research into interventions for the broader Autism Spectrum.

The main consensus that the participants were able to reach was that scientifically valid applied research into Autism Spectrum Disorders is so difficult to accomplish because individuals on the Spectrum are all so different and the condition can be so pervasive. They agree that more working groups and researcher trainings and the development of more innovative and precise research methods are needed. Beyond that, few easy answers emerged.

Uniformity in assessment of a given study's participants, both for their initial diagnoses and their progress over the course of the study, is important, but offering diagnostic evaluations to every participant in a study is expensive and time-consuming, and different studies may need different measures of results based on the specific phenomena being analyzed. Diversity among participants in research studies is crucial, but most studies have involved white, middle class participants - not because researchers actively discriminate against racial and economic minorities, but because so many of the families who have access to announcements of research studies are privileged enough to have obtained a diagnosis and become connected to the mainstream Autism community.

The scientific method calls for control groups in experiments, but withholding treatment from anyone in a population for whom early intervention is believed to be key would be inappropriate. Even when a control group is attempted, accounting for the placebo effect is much more difficult when administering intensive behavioral therapy than pills. And a parent seeking out additional interventions that may help their child is a confounding factor that cannot be controlled. So it becomes difficult to determine whether observed improvements are the result of the intervention being tested, or of the psychological benefit offered by participation in a new intervention that provides hope, or of an additional treatment that is being received outside of the study, or some combination thereof. Additionally, measuring the long-term outcomes of the treatments in the participant's natural environments would seem to be essential, but is much more difficult to accomplish than charting immediate results in a clinical setting, and nearly impossible to standardize based on some of the traditional scientific principles codified for biomedical research.

Furthermore, large, random samples of participants is considered a scientifically sound research method, but finding large numbers of individuals on the Autism Spectrum with comparable profiles and tracking them over a length of time during and after the intervention is economically and practically difficult. The panel called for randomized, clinical trials to "be the highest, but not the sole, priority" (705) of this field of research. However, a rebuttal article by Dr. Eric Schopler of the University of North Carolina, Chapel Hill, and Editor Emeritus of the Journal, disputes even that qualified recommendation. Schopler contends that considerations of the complex differences among individuals on the Autism Spectrum in the "real world" and the need to allow participants access to as many treatment options as possible has to take precedence over the scientific "purity" of data.

Everything we know about Asperger Syndrome and related conditions would suggest that these dilemmas come into play in research in those populations as well. All of these issues should be taken into account when designing and conducting social science research in "higher functioning" individuals on the Autism Spectrum, and are also likely some of the major reasons why so little evidence-based research of that nature has been attempted, let alone published.

- John Cavanagh

Asperger Foundation International
501 Madison Avenue, 18th Floor
New York, NY 10022
Phone: 212-371-7755
www.aspfi.org