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Saturday, 15 February 2014

Why I Joined the Boycott Autism Speaks Movement, Part Two

I didn't get everything out about why I decided to join the Boycott Autism Speaks movement in my first post on the subject. I knew that I wouldn't, hence the "Part One" when I was writing that post. It's time to get to Part Two.

Here's the recap from Part One:

I decided to join the Boycott Autism Speaks Movement (visit boycottautismspeaks.com for more information) because:

  • The language in co-founder Suzanne Wright's 2013 call to action

  • John Elder Robison's resignation, as one of the very few autistic people actually employed at Autism Speaks

  • The deliberately negative language and fear-mongering around autism in Autism Speaks education materials, especially the Autism Every Day PSA.

  • The low percentage of Autism Speaks' budget (3% in 2012) that went into support services for autistic people.

Let's dig a little deeper.

The Judge Rotenberg Centre...Issue

I'm not exactly sure what to make of this because I can't find information on just how extensive this partnership is. As someone pointed out in comments on Lydia Brown's article on the affair, it could have been an honest mistake that a display from the Judge Rotenberg Centre showed up on Autism Speak's Resource Walk at the DC Walk Now for Autism.

But wow. Go with the best-case scenario that they somehow slipped into the roster because someone wasn't paying enough attention, and Autism Speaks still couldn't have made a much bigger faux pas.

For those not familiar with the Judge Rotenberg Centre and how it "treats" autistic children, I've written about it here. But this article concisely summarizes how the shock therapy administered to autistic children and teens at the JRC has been officially been declared torture by the United Nations. Autism Speaks issued a statement saying that they didn't support the JRC and the use of these shock treatments.

Yet they were billed as a service provider at an Autism Speaks resource fair. It was very upsetting for many families, and as far as I can see there was no apology.

I don't want to support an organization that aligns itself, in any way, with an institution that tortures children. Next.

The Other PSAs

Autism Speaks continued the legacy it started with "Everyday Autism" of painting autism as the worst thing that could happen to a child and the people who love him/her, ever, with three others that, had I seen them right after my child was diagnosed, would have devastated me.

"I Am Autism" tries to end on a positive note, but the positivity is all about, "We will conquer this evil thing called autism that ruins every life it touches", not about acceptance, education, resources...things that my family and I need to know plan a good life for my child, still precious and loveable and absolutely with a bright future, despite an autism diagnosis.

"Neighbours", for its positive message on all people being able to access health care, also implies that society is only going to accept people that don't "act autistic".

When your informational videos are scaring the crap out of people (or making them angry; read the comments on especially the "Neighbours" video), then you have a messaging problem. But this goes further than simply getting the wrong message across. As I said in my first post on this, Autism Speaks co-founder Suzanne Wright has stated that her goal is to live in a world where autism is "a word for the history books."

I'm extremely uncomfortable with that idea.


Speaking of feeling uncomfortable...

I haven't done all the research that I need to on this (but it doesn't sound like Autism Speaks has either, frankly) and I'm certainly no expert, but Autism Speaks' stance on vaccination does not sit well with me:
"It remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic issue."

They do encourage vaccination on the same page. But for someone sitting on the fence about getting their child vaccinated because of autism fears (especially after hearing some of what Autism Speaks has to say about how terrible life is for everyone involved with an autistic child), just the acknowledgement of a "possibility" that vaccines might cause autism could carry a lot of weight.

Someone should please correct me if I'm wrong, but I thought that the theory that vaccines cause autism had been thoroughly discredited.

Autism Speaks: Bottom Line

Confession time: While I think that Oprah Winfrey has done some wonderful charity work and I admire her for it, I've never really liked her. It's obvious that she holds a tremendous amount of power to influence how people think, and it's not always been obvious to me that she uses that power responsibly. Reading blogger Ariane Zurcher's observation in a post about Autism Speaks that "What Autism Speaks says and does is often the first thing that parents and people reading about autism hear," I'm reminded of that idea of not wielding power responsibly: pushing an agenda on people who are scared and looking for answers, not showing them all sides of a story...

And because they're so big, they've had the power to allocate significant resources to keeping the organization going in the direction it has, even though the autism community has been saying for several years now that their needs aren't being served. But people can always choose to opt out if they don't like the direction in which an organization is heading. And it looks as if that's what's happening with Autism Speaks.

I'm happy to join that movement.


  1. This is a great breakdown of all the various pieces of this issue. One thing I think helps explain the broad support people have for Autism Speaks ... at least before they learn more about it ... is that they are totally invested in the disease metaphor to explain Autism. For them, it's not "neurodiversity", nor is it even a "condition" or "disability", it is a disease to them ... like smallpox, polio, and malaria. Now, those are diseases that kill people, degrade basic health, and also can be eradicated. We know how, so it's just a matter of sheer effort and resources. Autism Speaks people, I think, find it more secure and comforting in a way to think of Autism that way. If we just work hard enough and try hard enough, we can "beat" it. And by work and try, they don't mean work and try to understand and relate to autistic people where they are, or work and try to re-conceptualize what Autism is. Rather, they mean the kinds of working and trying they are mostly already familiar with ... fundraising, wearing distinctive pins, and engaging in PR activities where all the tropes and techniques are already well-tested and mapped out. They "tackle" a profoundly unfamiliar thing with the most familiar concepts they can find.

    It's understandable and certainly no mean or cruel in intention. The tragedy is that it is absolutely mean, cruel, and harmful in effects.

  2. Hi Andrew...thank you so much for your thoughtful and insightful comments on this subject. I think that you're ultimately right, and that what we're dealing with here is a clash of perceptions on what autism is and what needs to be "done" about it...and that the stance that Autism Speaks has chosen to take is one that I don't understand. And while I'm still in a process of learning about autism specifically, from a disability rights standpoint I find it very difficult (obviously) to approach subjects like this with much objectivity, although I do try to do so.

    I appreciate your analysis, and will be giving it some thought as I read more about what's going on with Autism Speaks. Thank you so much for commenting.

    And congratulations on your one-year blogoversary! (I don't know why, but I wasn't able to comment...)