John Elder Robison resigns from Autism Speaks

John Elder Robison has resigned from his seats on Science and Treatment Boards with Autism Speaks. His action came in the wake of an op-ed by Autism Speaks founder Suzanne Wright, “Autism Speaks to Washington - A Call for Action.”

A score of self-advocates and allies quickly denounced Wright’s op ed and its declaration of a “national summit” (to be led, of course, by Autism Speaks).

Advocacy groups including the Association for Autistic Community and the Autistic Self Advocacy Network as well as the Autism Women’s Network issued formal statements of rebuttal.

In their joint statement, AAC and ASAN cited Autism Speaks’ “long and continued pattern of exclusion of Autistic voices from its work on autism.”

And in his letter of resignation to Autism Speaks president Liz Feld, Robison stated that for the past four years, he worked very hard to defend Autism Speaks from “a series of public relations missteps.” (That’s actually putting it mildly; its promotional films, “I Am Autism” and “Autism Every Day,” promoted hateful and degrading stereotypes of people on the autism spectrum.)

“I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today. I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community. I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.”

But Wright’s recent statement demonstrated to Robison that his words and efforts had no real impact on the beliefs of Autism Speaks leadership.

“One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion. Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.

“This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.

“Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

This woman on the autism spectrum applauds Robison for acting on his principles. I offer my condolences that Robison had to abandon efforts to steer Autism Speaks’ science.

I give special thanks, too, for mobilization efforts led by Beth Ryan (and viewed on the blog of Paula C. Durbin-West) to contact officials in Washington.

With her refrain of “This is autism,” Wright resurrects the message that autistic people are burdens and vectors of despair. There’s simply no room in Wright’s message for any gifts conferred by autism. There’s no recognition that autism is experienced as a spectrum of gifts and challenges. For that matter, Wright offers no recognition that self-advocating adults exist.

Our elected officials need to hear from autistic constituents and allies. They need to hear that “Autism Speaks does not speak for me.”