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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.

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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.

John Elder Robison
The author speaks about autism to a class at the Harvard Graduate School of Education. John Elder Robison

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.

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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.

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  • Hello John,

    I’m glad to hear you found found researchers willing to listen to you, however in a lot of research I’m reading I still see the ignorance level is quite high, blatantly obvious and frustrating.
    Many still seem to be spending huge amounts of money to learn things that are trivial innate nature to an Autistic person(depending on their psychological status). They are still ignorant about Autistic body language and “behavior”. They are still ignorant of psychological consequences , what can cause or reinforce suicidal ideation and PTSD.

    They are not demonstrating a knowledge level of people that are listening to what can cause harm regardless of “good intentions”.

    It doesn’t seem like they have read blogs of parents that attempted(or succeeded) to murder their children and recognized what was obviously wrong and what kind of research lead to those practices. It doesn’t seem like they are aware of why some committed or attempted suicide.

    I would also speculate that PTSD is likely to be viewed even by some Autistic people that don’t have PTSD as a disorder buzzword they don’t understand any more than Neurotypicals that haven’t lived with PTSD.

    For those that have survived all the reinforcement of internalized hatred or suicidal ideation and have come to accept and respect themselves; there’s also the profound survivor’s guilt that comes with seeing patterns upon patterns of preventable losses or harm to this day.

    I 100% agree that Autistic people should be involved in directing research or researchers themselves, however it needs to be much more than “advice”. Ethical reform and oversight is badly needed. I’m glad that’s what you’re seeing on the “inside”, I can’t help but feel skeptical about what I’m still seeing. If the conversations are starting to take place, that’s something at least.

    I’m just wondering how many more years of my life I will have to dedicate to dealing with the harmful consequences before those conversations take root and rights start to take a greater priority. Until that happens, there are many challenges to be faced on different fronts while preventable losses are still taking place. It’s going to take a long time to undo the damage that has been done and to make certain practices illegal or require reforms in order to continue operating. It would be nice if researchers were a part of that too.

    All too often those research discoveries simply lead to them trying to come up with some kind of “conversion” for children rather than meaningful accommodations. Many are still not looking to work with our differences, they are still trying to “correct” them.

    There are many issues that could be resolved by now if research focus wasn’t so narrow or deficit based; issues that don’t actually require research to solve. The focus seems so narrow that they are not considering the complexity and balance of what makes an entire person; granted that is hard to do if you focus only on one field.

    I’m glad you know some that are doing better than this, I’ve occasionally seen a few articles from researchers that I appreciated, where it was clear they had been listening; they are however in the minority.

    I appreciate your efforts and hard work, but I’m wondering if Neurotypical researchers have influenced your focus as well. I often found that if I conditioned myself to communicate with neurotypicals for long periods of time, that I nearly stopped thinking as an Autistic because I was so focused on shorter generalizations that I actually tossed out more detailed articulation. It helped me socialize and even flirt around, but I found the cost to my mind not to be worth it.

    It may be logical to operate within the existing social rules of the majority, but it isn’t always healthy. Just some “food for thought”.

    Wishing you, Dena and your allies on the inside all the best.
    -Chris “Stargazer”

  • I read Look Me In The Eye a few years ago and it was tremendously helpful to help me understand the challenges some of the population I work with (forensic mental health). I’m appreciative of Mr. Robison’s courage to share his story to help mental health clinicians understand his perspective and become more effective therapists.

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