Whose Table Is This, Anyway?

My good friend John Robison has written an important and articulate piece on autism advocacy.

He says

… it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.

To many of us who, like me, have been fighting for the right of autistic people to control their own destiny, this seems obvious. In our struggles to gain recognition for the right of self-determination, we have adopted the motto of the wider disability-rights movement,

Nothing About Us Without Us!

We autistics share many of the same challenges and frustrations that have been known to people with other disabilities over the years. In fact, we share much with all groups of people who have had to fight for the human rights they deserve. In his essay, John mentions Jews and Native Americans; two groups who are clearly candidates for this category, and there are many others. This country has a history of mistreating recent immigrants, especially those who were brought here involuntarily from Africa and other places.

Our society has made great progress on this front in recent years, but we have a long way to go. We no longer routinely institutionalize autistic people (although there still are some who are mistreated in this way). People like John and me sit on Boards, write books and blog posts, and speak to large audiences about our experiences and our thoughts.

Still, as I make the rounds, I’m continually astounded at how insensitive many people are to the need to include autistic people in conversations about autism. I often sit in a room full of neurotypical people who are talking about autism in ways that are demeaning and insulting, as if I were not even in the room.

After I figured out that I’m autistic (about eight years ago), I became very interested in learning more, and began reading about research done on the subject. Along the way, I have befriended many academic researchers and have had fascinating and enlightening conversations with them. Yet I remain astounded that there is not more “community involvement” (as it’s called) in autism research.

Autistic people are typically not involved in research design (let alone in deciding which questions are important to investigate), nor in interpreting results. The vast majority of autism research has been focused on children. Of course it’s important to understand the early-life experience of autistic people, but we do grow up. Why is there so little interest in finding our what happens to us later in life?

I’ve only scratched the surface here, of course. John’s essay covers more points. Some people have moved on beyond “autism awareness” and understand the need for acceptance. Yet John and I and many many other autism advocates are calling for more than acceptance. While fully recognizing and respecting the needs of family, professionals, and the wider autism community, we autistics want and deserve self-determination.

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