This last week marked the release of Steve Silberman’s much awaited book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, as well as the publication of his Op-Ed piece in the Los Angeles Times, titled Autism Speaks needs to do a lot more listening.
In the last few days there has been a backlash from Autism Speaks, which I surmise might be because Steve Silberman more widely known and is less easily dismissed as a part of the ‘radical fringe’, and thus a bit more of a liability to their credibility.
You can catch a bit of this action (and reaction) on Ed Asner’s fb page, where he defended Autism Speaks and erroneously asserted that Silberman “… took the hyperbole of the #boycottautismspeaks group without actually researching what Autism Speaks does.”
Asner also added:
“Silberman asks readers to imagine an all white NAACP making a preposterous comparison to the executives and board of Autism Speaks. Many of the board members and executives of Autism Speaks have children on the spectrum. They are parents. Parents who, like me, want to see their children and adults living with autism have the best chance at a life they richly deserve. While I agree that it is time for an individual with autism to be on the board, this comparison is misleading at best.
I am a parent that has been helped by Autism Speaks and I believe that anyone with a horse in the autism race has been as well.”
(I have included only a part of Asner’s lengthy post to make a point. Visit his fb page as linked above to check it out in its entirety.)
Autistic activist, writer, and Ed Wiley Autism Acceptance Library founder, Lei Wiley Mydske, responded:
“Boycott Autism Speaks is invested in disability rights and justice. Our rights and humanity are not “hyperbole”. But way to completely dismiss Autistic disability activists and our legitimate concerns and grievances with an organization that MANY Autistic people consider a hate group.
Boycott Autism Speaks is a grassroots movement made up of #actuallyautistic people, our families, parents and friends who want an end to the hateful rhetoric, fear mongering, irresponsible fundraising and toxic “support” of Autism Speaks.
I think it is telling that Autistic people have been protesting Autism Speaks brand of “advocacy” for just as many years as they’ve been around and we have been met with silence. A non-Autistic person amplifies our voices and concerns with Autism Speaks, and suddenly, they feel like they should respond. Why can’t they listen when Autistic people are speaking?????? #boycottautismspeaks #nothingaboutuswithoutus “
Autistic activist and poet, Amy Sequenzia, also responded:
“People with a “horse” in the autism race? Wouldn’t that mean Autistics? I mean, our opinions about our lives do matter, right?
Sure, celebrities show up, it must be good (rolling my Autistic eyes)
Do you know who A$ has not helped? Autistics. That should suffice. Oh, and I am blocked from their social media, because of course, why would my word about who I am have any value (rolling eyes again)
MSSNG. Oh boy! Don’t you see how terrible this sounds to us? We are not missing! A$ wish we were though.
And “Light it Up The Blues” should be the correct name for it. It does do that to Actually Autistic people
What you list as “helped” is what we don’t need: tool kit full of dread about the future; “treatments” that seek to change who we are; segregated “communities”, oh, yeah, A$ lobby against having Autistics during the debate on the Autism CARES Act.
Yes, it helped parents. Which does not mean it helps us. Quite the contrary. Let’s not forget that when a parent murders their Autistic child, A$ is quick to say that the child was soooo severe and the parent was soon overwhelmed.
Let’s check the financial reports, shall we? More money for catering than for family support.
Boycott Autism Speaks does have the information. We found it on the A$ website and we live the consequences of A$ hate.
And before you say “you are not my child” type of thing, go check who I am. I am “that” Autistic A$ loves to say is a burden.”
And Autistic activist and scholar, Dani Alexis Ryskamp added:
“The fact that Autism Speaks has (non-autistic) parents of autistic kids on their board, but no actually-autistic adults, emphasizes Boycott Autism Speaks’ point rather than undermining it. Autism Speaks is a charity run by and for the benefit of those non-autistic parents who remain unwilling to embrace their autistic children as full human beings, autism and all.
This is the fundamental error from which all Autism Speaks’ other mistakes spring. Until Autism Speaks corrects this error, it will never work in the interests of autistic people – only in the interests of those who would prefer autistics did not exist.”
In typical ignoring-criticism and shifting-the-argument fashion, someone took Asner’s bait and asked: “Could it be that Mr. Silberman needs to do a little more research on Autism Speaks?”
Really?!? Could it be that Autism Speaks should not be silencing the voices and perspectives of Autistic people, and promoting and spreading the negative stigma that makes their lives more difficult??
(Hint: Yes… the answer is YES!)
Ironically, Asner’s post and the lack of response to Autistic people who commented there is a stark and sadly perfect illustration of exactly the problem with the organization he is working to defend.
Hold this all with you… as a microcosm of all things Autistic Speaks, as you now consider that this week AS has responded to criticism with a “Call for Unity” – a political tactic that is a grossly transparent attempt to shift the attention from accountability to even more effectively silencing and ignoring Autistic people.
Autistic educator, scholar, and aikido teacher, Nick Walker, had this to say about Autism Speaks‘ call for “unity.”
“What the vulture calls unity, the giraffe calls getting eaten.”
I think this pretty much sums it up… and so some doodling happened…
I will continue to #BoycottAutismSpeaks It is impossible to have “unity” with a group that calls my Autistic friends and family members tragedies and burdens!
Please check out these petitions and links to find out more and take action to support the Boycott Autism Speaks movement:
• Website: boycottautismspeaks.com
• On facebook: Boycott Autism Speaks
• On Twitter: @Boycott_AS (check out hashtag #BoycottAutismSpeaks)
• Petition: To the Corporate Sponsors of Autism Speaks
• Petition: to Sesame Street Reconsider Partnership with Autism Speaks
• If you and your organization are interested in supporting projects that are fighting stigma and actually making the world better for Autistic people… please read more about Lei’s Library ❤️ or The Autism Women’s Network (AWN) or look to support local initiatives within your community.
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism (2015)