What’s Wrong With Autism Speaks?

When my daughter was diagnosed, we heard about Autism Speaks.  Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received.  In fact, we gave money to them during those early years.  When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.

“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)

“No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.” ~ Lydia Brown,  Autistic Hoya

I didn’t know.

“Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.” ~ ASAN, Before you Donate to Autism Speaks..

“Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though.” ~ Paula Durbin-Westby

I didn’t know.

Autism Speaks has aligned themselves with the Judge Rotenberg Center, (read Autistic Hoya’s:  An Unholy Alliance) a center that uses electric shock as an “aversive”.   The Judge Rotenberg Center continues to accept “students” despite this video footage showing a young man being tortured.

For more about the Judge Rotenberg Center read Autistic Hoya’s post with dozens of links ‘here‘.

Bob and Suzanne Wright, whose grandson is Autistic created Autism Speaks in 2005.  Since then Autism Speaks has become one of the most influential autism organizations in the world.  What Autism Speaks does and says is often the first thing parents and people reading about autism hear.

“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.”  ~ Suzanne Wright’s  A Call to Action

The problem with this kind of rhetoric is that it is not a “call to action” it is a call to terror.   Terror that our children are “missing,” or have been “stolen,” or that if we are not careful any of our children will be “taken away” from us.  It furthers the misconception about autism and likens it to a predator, a kidnapper who will steal our children from our loving arms.

This is not awareness, this is propaganda.

Autism Speaks is responsible for a number of public service announcements which show screaming children and their exhausted parents who talk to the camera about how hard it is to have an autistic child while those same children are present.  I might have been one of those parents not so long ago.  In fact I allowed a camera crew to come to our home several years ago and film us.  The short film showed us sitting on our couch talking about our daughter as she sat beside me, (not realizing my daughter understood everything that I said, this is yet another of my many regrets) intercut with clips, I provided them with, of my daughter in full melt down.  I have since asked that our interview and all clips of my daughter be removed and I am grateful they respected my wishes.   The parents in the Autism Speaks videos are not so fortunate.

So many of us have supported organizations we thought were working toward positive change.  We believed they were helping us, our children and Autistic people.  We thought they had our children’s best interests in mind.  We believed they were doing good, only to find we were wrong.

I didn’t know.  Now I do.

Related Articles by Autistic people speaking out about Autism Speaks:

John Elder Robison – I Resign My Roles at Autism Speaks
Wikipedia – Talk: Autism Speaks/Controversy links
Golden Hearted Rose – So, What’s the Problem with Autism Speaks?
The Caffeinated Autistic – Why I am Against Autism Speaks…
Evil Autie – This is Autism Speaks
One Quarter Mama: Why I don’t like Autism Speaks
Initiative Action