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Thursday, November 14, 2013

Autism Speaks Contoversy

This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
No more.  Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.  We will demand a national response.
John Elder Robison has responded by resigning from the organization's science and treatment advisory boards  He writes on his blog:
The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.

Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.
At The San Francisco Chronicle, Laura Shumaker shares her letter to Liz Feld;
I am the parent of a 27 year old son with autism and a long time supporter of Autism Speaks. I contributed to the Transition and the Employment/Housing Toolkits, have been a frequent contributor to the Autism Speaks Blog, have written frequently about Autism Speaks in my SFGate Autism Blog, and have spoken at many kick off events. I have great working relationships with many of your staff.

Over the years, many self advocate groups have argued with me about the role of Autism Speaks in their lives. I have been a loyal defender, pointing out the that Autism Speaks family services and resources are extremely beneficial for parents and families over the lifespan. I was gratified when it seems that Autism Speaks took down the video “I am Autism” and appeared to be changing their tone toward a more positive “make life work” for people with autism (and believe that my influence and loyalty helped change that tone.)

I am very discouraged with the Wrights recent remarks, and believe that the timing could not be worse.
A press release from the Autism Women's Network:
On Wednesday, the Autism Women's Network (AWN) condemned Autism Speaks, Suzanne Wright, and all entities involved in the publication of "Autism Speaks to Washington- A Call for Action" and its hostile and dishonest portrayal of Autistic people. AWN denounced Autism Speaks, the largest Autism Advocacy Group, for hosting a Summit on Autism in Washington, D.C. this week which excluded the participation of Autistic people while simultaneously endeavoring to secure a national plan on Autism.