A recent study of claims of mental retardation in autism from the late-1930s till 2003 showed that three-quarters of them had NO empirical data. New work on theory-of-mind by Morton Gernsbacher has demonstrated that scientists have been using the wrong tests to assess this skill. Add to this horror tons of anecdotal [stuff] from professionals about how miserable austic lives must be and it’s no wonder that parents, when facing a diagnosis, panic.

We neurotypicals have <strong>projected</strong> onto different physiologies and different sensibilities our neurotypical ignorance and fear. <strong>living</strong> with autistic people reveals a different story. Parents are dismissed because their accounts, as the doctor above makes clear, are unscientific, but they know <strong>from experience</strong> that what the professionals are saying is wrong, or at least insufficient.

I’ve come to listen to those doctors like Laurent Mottron at the University of Montreal who have invited autistic people to join their research teams or those who have autistic family members. We need <strong>more</strong> studies from such people, but studies <strong>are</strong> emerging.

The reality of cognitive disability is so very different from what the experts say, and history has shown that the scientific community has been repeatedly wrong and, at times, even vicious about those with differences. I think of my son who is now a straight “A” student using a computer to speak. He’s the most thoughtful, empathetic and politically conscious young person I know. What would have happened had we listened to the dire prognosticators?

But while I believe that such articles are necessary to change health professional behavior, I worry they will not be sufficient. As a practicing physician [now retired], educator, and community-based participatory researcher, I know that many health professionals view personal stories as just “anecdotal,” and not real scientific evidence. Many health professionals want professional standards and professional behavior to be “evidence-based,” that is, based on good scientific research.

Thus, results of good research about the quality of life and achievements of a cross-section of people with Down Syndrome are needed as well. The cross-section should truly represent the entire range and likelihood of people with Down Syndrome, that is, not be composed just of the more public exemplary people — and should go to at least to young adulthood.

Ms. Brasington’s article was published in the “Journal of Genetic Counseling,” the official journal of the National Society of Genetic Counselors. Using the journal’s website, I found only 21 articles in the journal’s index for articles with “Down Syndrome” in its 16 years of publication. Only 5 articles focused primarily on Down Syndrome. No article was about the long-term lived experiences of people with Down Syndrome.

While many genetic counselors are as knowledgeable about Down Syndrome as Ms. Brasington, many others are not. No wonder. I hope that self-advocates with Down Syndrome, and parents and sibs and other advocates, demand that such research be done — and that the research be done in partnership with them.

Bill

Mary Muller