As the Iowa principal investigator for SPARK, UI associate professor of psychiatry, and board member of the Autism Society of Iowa, I have had a front row seat to the community response as we have conducted this study of autism in Iowa over the past three years. Thousands of Iowans have joined hundreds of thousands of SPARK participants nationwide in a partnership with scientists to map the extreme diversity of autism. We have only been able to achieve this through sustained support from the community.
Because of this overwhelmingly positive response, I was surprised to read a recent Daily Iowan article about SPARK whose headline determined that the most noteworthy thing about the study were the “community concerns”. In drawing this sweeping conclusion, the article quoted only a single member of the autistic community.
Talking about autism is complicated. It involves questions that touch on personal identity, society, and disability, all wrapped up into a single label. Autistic people might emphasize personal identity issues, while advocates may focus on the societal barriers that make life difficult for individuals and families. Scientists and clinicians tend to focus on understanding and treating the disabling aspects of autism because that’s where their training puts them in a position to make a difference.
When we favor one of these perspectives on autism to the exclusion of others or make baseless accusations against those who are on our side, we set the whole community back. Each of these perspectives is essential in making real progress in improving the lives of those with autism.
Autism is a highly genetic phenomenon, and it would be irresponsible for scientists to ignore genetics as an important part of a larger holistic strategy to better understand it. Studying the genes that underlie autism holds the key to insights that we hope will lead to increased understanding, certainly at a biological and medical level, but also eventually at a personal and societal level. I am profoundly grateful for the support and enthusiasm of the Iowa autism community in recognizing the value of this research and for making it possible.
— Jacob Michaelson, Ph.D., Roy J. Carver Associate Professor of Psychiatry and Neuroscience