John Elder Robison is one of the most thoughtful voices in the autism community. So when he speaks, I pay attention.
I like to think I have a pretty good understanding of autism, at least of the variety that has touched my family. But I do not, nor would I ever pretend to, know how it feels to live and think as a person with autism. I have learned an immense amount from my son, mostly by trying to look at the world as he does so that I can help him mitigate his challenges, but at best I am attempting to experience life with autism by proxy through him.
Robison knows that life. He spent much of his youth aware he was different and wondering why certain things were so difficult, before receiving an Asperger’s diagnosis as an adult. Since then, he has written several books documenting his life with autism, most notably Look Me in the Eye, a title that no doubt many of you have read.
It was Robison who, in resigning his position from the Autism Speaks board, offered perhaps the most thoughtful take on the “Call to Action” controversy in 2013.
So when I stumbled across this article in my Facebook feed yesterday, I read it with great interest. In it, Robison explains why he attends the annual International Meeting for Autism Research, or IMFAR.
I encourage you to read the entire thing, as it is chock full of simple, direct reasoning that addresses some of the main challenges facing the autism community head-on. And I’ve come to expect such things from Robison, who effortlessly manages to find the difficult-to-attain middle ground between those on opposite sides of a deep divide.
Robison’s final quote in the story, is the one I want to leave you with:
We are the population you are trying to help, through your science. Listen to us.
That quote is directed at the scientists and researchers who will attend and present at the conference. But it could just as easily be directed towards autism parents. Listen to your children. They may not communicate exactly like you do, but they have a lot to tell us about what they need. It’s a lesson I have been working on learning for more than a decade now, and my education on this subject is far from complete.