John Elder Robison Leaves Autism Speaks Amid Controversy

John Elder Robison

John Elder Robison

Author John Elder Robison has resigned his post as a member of the Science and Treatment boards for Autism Speaks. The author of such books as Look Me in the Eye: My Life with Asperger’s and Raising Cubby states that he cannot support the organization due to their tendency to portray autism in ways that are offensive to individuals with the diagnosis.

His resignation letter specifically mentioned a video titled “I Am Autism,” which featured pictures of children with autism along with a menacing voice-over saying,

“I am Autism . . .I will plot to rob you of your children and your dreams.”

He also referenced a recent blog post by Suzanne Wright, co-founder of Autism Speaks, calls autism a “crisis” and a “national emergency.” Robison’s response is as follows,

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents, or society, or genes to be eliminated. We are people.”

He concedes that individuals with autism do have challenges, and that they and their families need support. His issue with Autism Speaks lies in the way they portray autism to society, along with their failure to include people with autism in positions of power within the organization. He says,

CC BY-NC-ND by iFireDesign

CC BY-NC-ND by iFireDesign

“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. The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.”

He goes on to say that the organization’s number one priority should be people with autism, not their parents or grandparents.

The Autism Society responded to Robison’s resignation as follows,

“The Autism Society . . . does not believe nor accept the description of a person with autism as described in a recent Autism Speaks blog. . . To consider a child or adult with a disability as a burden as some do leads to stereotypes that are damaging and insulting to so many of us.”

Robison followed up on his Facebook page with the following post,

“There has been a tremendous response to my decision to resign from the Autism Speaks. While I am touched by the support people have shown me, it saddens me that folks are celebrating my decision to abandon my efforts to steer their science in a constructive and beneficial direction.”

He goes on to say,

“We have a number of good organizations fighting for rights, but none had anywhere close to the resources of Autism Speaks, especially in science. Will they wake up and welcome autistic people into their leadership? I hope so. If it does I will feel my service was worthwhile.”

          

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