his week I will join roughly 2,000 scientists and autistic advocates in San Francisco for IMFAR — the International Meeting for Autism Research. As an autistic adult, I feel it’s important to be in the midst of this gathering and to offer scientists my opinions about research, unmet needs, and unanswered questions.
We have a saying in the disability advocacy community, “Nothing about us, without us.” When it comes to autism research, if we want science to address our concerns, we first need to make sure that researchers know what those concerns are.
It’s been a decade since I got involved in guiding the direction of autism science. In the beginning, I knew little about medical science and its potential; all I knew was what I had wrestled with all my life. But along the way I’ve acquired a broader understanding of autism and how it affects individuals across the whole spectrum.
There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.
Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.
A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.
People with autism have long volunteered to participate in research studies. Now we are discussing, and sometimes challenging, research strategies and ethics and are becoming involved in shaping the studies of tomorrow. That’s essential because the only people who really know what it’s like to live with autism are autistic people.
Augusta University, for example, is starting an autistic-guided study into adult needs in the autism community. Research under discussion ranges from basic genetic studies to the development of therapies to help us succeed in workplaces and schools to concerns about early mortality and aging.
When autistic individuals and autism scientists get to know each other, it’s easier for autistic people to voice their concerns and discuss constructive paths to solutions. The emerging cooperation between autistic people and scientists is very exciting to me. What’s more, autistic people like my friend Dena Gassner are also “coming out” publicly about their own autism and becoming researchers themselves. That is very gratifying to see, and I look forward to the great contributions they will make to science.
A few years ago, I was the only autistic advocate to be a voting member of INSAR, the professional society for autism researchers. Today there are at least 10 of us among INSAR’s 1,500 members, and more coming. I invite any autistic adult who is willing to make the commitment to understand the issues to join us in guiding the science that will lead us to better lives tomorrow.
John Elder Robison is an autistic adult and advocate for people with neurological differences; the New York Times bestselling author of “Look Me in the Eye,” “Be Different,” “Raising Cubby,” and “Switched On”; Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Va.; and visiting professor of practice at Bay Path University in Longmeadow, Mass. He is also a member of the Interagency Autism Coordinating Committee, the federal government’s top-level autism committee.