Review of IAN Research Report

The Interactive Autism Network Community (IAN) was launched on April 2nd by the Kennedy Krieger Institute and is the first national autism registry. Its intent is to help families of autistic children to:

- Understand the research process
- Keep up with the latest research findings, news, and events
- Understand the value of participating in autism research
- Influence the direction of research

The IAN issued its first IAN research report on May 21st. Information has been collected from some 14,000 individuals, among whom are autistic children (aged 18 and under; autistic persons aged 18 and older will be able to participate after 2008). Over 3000 mothers participated and 500 fathers and 1030 different treatments for autism were noted (speech therapy and OT were at the top of the list, and a casein-free diet was noted slightly more than a gluten-free one).

The first point noted above—to “understand the research process”—is addrssed in the IAN research report, The research is indeed written in language accessible to the layperson, with explanations of terminology:

“The data that we discuss here represents information only from those who have completed and “finalized” their questionnaires. (”Finalizing” is the step where a participant looks over their answers and indicates that everything is correct and ready to go”)

and with occasional use of exclamation points (”Fathers –your data is crucial, too!”). Colorful graphs and charts are included with the data and an instructional guide to reading these provided. In regard to the data on treatment options and “issues of attention and mood”—as to what treatments are successful and to what extent attention issues are part of autism—the report notes (in regard to the latter) that “More research is definitely needed!”

The IAN report also indicates why it is important to participate in research (what the “value” of research is, the second point noted above):

To gain a better understanding of autism and how to treat it, scientists need what families have: detailed information on children’s diagnosis, treatments, environment, and services received. IAN is gathering this information directly from families, giving them an opportunity to “be part of the solution” and to make their voices heard.

Regarding the 3000 mothers and 500 fathers who have so far participated, it would be interesting to know how many are from the same household. Also, it might be useful to know more about the backgrounds (socio-economic status, level of education, location, etc.) of these parents. Might there be a certain profile of parent who is more likely to fill out the IAN’s surveys? (I have registered with IAN and am still reflecting on the questions in the surveys.) Further, as indicated in previous communications, the views of autistic adults (who are indeed fully aware of the “value of research participation,” the third point noted above) were not included, and it would be well to include their voices. As Dr. Morton Gernsbacher noted in The True Meaning of Research Participation (APS Observer, April 2007,

Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?

Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics.

Who, indeed will “influence the direction of research” (this being the fourth point noted above)?

It does seem to me likely that some autistic adults may well have already participated in the IAN research: Among those 3500 mothers and fathers, it is probably that some might or even must be adults on the autism spectrum.