By Debra Muzikar
The pressure for reform of the largest nonprofit for autism, Autism Speaks, heated up this week with a Los Angeles Times Op-Ed piece by Steve Silberman. The article, titled Autism Speaks needs to do a lot more listening, is a play on words as Autism Speaks tagline is “a time to listen.” Autism Speaks has been criticized repeatedly for not listening to autistic people.
In the article, Steve criticizes Autism Speaks for many reasons including their focus on research and early intervention and their lack of funding for adult services.
“Among the areas of research that are perpetually underfunded in the U.S., says disability rights advocate Lydia Brown, are ways of facilitating inclusive education, developing strategies for preparing autistic teenagers for the workforce, studying problems in sensory integration, helping autistic people to live more independently in their communities, improving access to healthcare, reducing discrimination in employment and housing, and ending the abuse of autistic people by their service providers.”
Steve also criticizes Autism Speaks for their lack of representation of autistic people on their board. Earlier this year I posted an informative article about Autism Speaks. Many autistic people and parents of autistic children participated in the content of that article. Many concerns Steve mentioned were mentioned in that article. The criticisms of Autism Speaks have been well documented in the autism community. My two major problems with Autism Speaks are (1)Autism Speaks comes into a community and leaves with monies that should stay in that community. Donations to other local nonprofits go down after an Autism Speaks fundraiser; and (2) negative media messaging effects the self-esteem of autistic people and contributes to the marginalization of this growing segment of society.
Steve Silberman’s article was responded to by Liz Feld, the President of Autism Speaks. I encourage anyone interested in this debate to read Steve Silberman’s Op Ed piece and Autism Speaks’ response. (Note: the link goes to Autism Speaks’ response through a donotlink site. We don’t want peeps linking to the Autism Speaks website). Unfortunately Ms. Feld’s response didn’t answer any of Steve’s criticisms. Instead a board member of Autism Speaks, Chuck Saftler, made a call for unity. Isn’t that convenient?
My question to Autism Speaks is how can you have unity when you exclude autistic voices from meaningful representation in your nonprofit? Unity implies all. Not some.
Although I’m thrilled Autism Speaks finally responded to a criticism as they are notorious for being nonresponsive when criticized, I’m unhappy that their response is filled with political maneuvering and rhetoric. I’m all for unity. If Autism Speaks wants to be a leader in unifying the community, why don’t they have a stakeholder meeting with autistic people and organizations that represent them?
I asked some of my Facebook friends what they thought about the controversy.
“What the vultures call unity, the giraffes calls getting eaten,” Nick Walker responded.
“It is ridiculous that an organization that relentlessly excludes the people it claims to serve would put out a call for unity, as though THEY are the ones who already have it. They have had 10 years to unify with us and vehemently refused,” Daniel Obejas, Autistic Self-Advocacy Network
“Even with all of the money they spend on marketing they just can’t stop disrespecting and offending Autistic people. (Obviously they need advice from Autistic consultants.) Activists have been saying what Steve Silberman says in his article for years with NO response from A$’s president. Autistic people are now further insulted to see that they will publicly respond to him while continuing to dismiss them. Almost as if they can only process the language coming from a Neurotypical person. (?) It is so completely dishonest to oppress and willfully ignore people in a community that work so very HARD to master ways to express exactly how they feel,” Kelly Green
“I speak just fine. Their commercials trashing autistic people are WHY I became a self advocate. Very offensive and it does not help parents to have autism painted dark and scary. It just encourages pity and pity helps no one. I don’t need pity I need acceptance,” April Dawn Griffin
“So after years of ACTUAL AUTISTICS speaking out against them for their hate speech towards the Autistic community and get ignored, they decide to suddenly listen to a NON AUTISTIC for doing the same?? Yea because apparently a typical voice is MORE valid than an Autistic one.. Joke org,” Raul Munoz
“ I have decided to ignore my previous (relative), self-induced silence on the issues surrounding AS – which I chose for myself for various reasons – to write a blog on this issue. I will be considering this recent op ed piece, ASS’ response (pun intended), and will also disclose the facts relating to myself, my son and AS way back in 2006 and beyond. I have been silent, for good or bad, for too long. I need to be thoughtful in my writing and sharing my truth, so I will post when I have completed my task,” Keri Bowers.
Autism Speaks – it’s time to listen.
Steve Silberman is the author of the new book Neuro-Tribes: The Legacy of Autism and the Future of Neurodiversity. I’m happy to see Steve’s book is #220 on the Amazon bestseller list and #1 in his category. Steve has long been interested in the autism community. In 2001 he wrote an article for Wired Magazine titled The Geek Syndrome. Over the years Steve has become friends with many in the autism community and actually autistic people. I’m waiting for my copy of Neuro-Tribes that my good friend Kelly Green ordered for me.
Stay tuned for a book review soon.