A prominent self-advocate is resigning from his post with Autism Speaks citing “destructive” public statements from the organization’s leadership and their disinterest in his ideas.
John Elder Robison says he has resigned from Autism Speaks’ science and treatment advisory boards, which help review scientific proposals that the organization considers funding.
In the role, he was one of, if not the only, individual with autism actively weighing in on decision-making at the group.
Robison said he was prompted to resign after reading a commentary this week by Autism Speaks co-founder Suzanne Wright who wrote on the group’s website about an “autism crisis” that she described as a “national emergency.”
In the piece, Wright said families affected by autism have been left to “split up, go broke and struggle through their days and years.”
“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism,” Wright wrote.
The words did not sit well with many in the autism community and, as a high-profile representative of Autism Speaks, Robison said anger over Wright’s piece was directed his way.
“I had been criticized right along for working with Autism Speaks, but the tone of Mrs. Wright’s recent essay made the current attacks much more strident,” Robison said in an email to Disability Scoop. “I too was troubled by her essay, and I realized her words reflected the thoughts of the top leadership of the organization.”
“I would never say the words she said in that article,” he said.
Robison said he notified Autism Speaks of his resignation from his volunteer role in a letter to the group’s president Liz Feld earlier this week and, when he received no reply, decided to write about the decision to step down on his blog. The posting generated hundreds of supportive comments.
Autism Speaks has long had a touchy rapport with many self-advocates who object to the lack of representation of people with autism within the group’s leadership and have criticized the organization for making statements characterizing autism as an epidemic in need of a cure.
But having a public figure in their corner like Robison — who has authored several books and is known for speaking about his experiences on the autism spectrum — helped Autism Speaks project an image of inclusiveness.
Now, however, critics say Robison’s break from the group is more evidence that Autism Speaks is a top-down entity that isn’t interested in views from those with autism.
“Robison was the only autistic affiliated with the organization’s leadership,” said Ari Ne’eman, president of the Autistic Self Advocacy Network and a long-time critic of Autism Speaks. “I think his departure speaks to the fact that Autism Speaks is not an organization capable of reform.”
For his part, however, Robison said the situation is unfortunate given that Autism Speaks’ fundraising power far exceeds that of any of the other groups focused on the developmental disorder. Robison said that he had hoped to be able to promote change from within the group, but found that his suggestions of late were “politely ignored.”
“It’s a sad day for me because they have so much potential, but so little is actually realized. I hoped I could do more,” Robison said.
Autism Speaks spokesman C.J. Volpe did not respond to questions about Robison’s resignation, only saying that the group would prefer to talk about its policy summit in Washington, D.C. this week.