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In Shift, Autism Speaks Appoints Self-Advocate To Advisory Board


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After years of criticism for not including self-advocates in its leadership, Autism Speaks said Tuesday it is appointing an individual with autism to one of its committees for the first time.

The organization, which is the the nation’s largest for autism advocacy, says self-advocate John Elder Robison is joining its scientific advisory board.

Other members of the 30-person board, which is responsible for reviewing grant applications for millions of dollars worth of autism research, are researchers and family members of those with autism.

Robison, who wrote the book “Look Me in the Eye: My Life with Asperger’s,” teaches at Elms College in Chicopee, Mass. and previously served on the public review board for the National Institutes of Mental Health.

“It is essential that our grant funding reflects the needs and perspectives of the community we serve, namely, people with autism spectrum disorders,” said Geraldine Dawson, chief science officer at Autism Speaks, in a statement. “We are very pleased to welcome John to our scientific review boards. His insight and skills will prove invaluable.”

For self-advocates, however, the appointment of one person with autism does not go far enough. They’re calling for systemic change at Autism Speaks to include people with autism of varying perspectives at all levels throughout the organization.

“If you have an organization for women and you had an advisory board and it had one female on it, that would not be acceptable,” says Scott Michael Robertson, vice president of the Autistic Self-Advocacy Network. “This doesn’t really change anything.”

Even Robison acknowledges that he is just one voice.

“I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support,” Robison said.

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