Dear Autism Speaks: Cure Is Still a Four-Letter Word


Autism Speaks made me buy pens at Walmart.

When my friend Paula C. Durbin-Westby posted about "school supplies" with Autism Speaks branding being sold at Walmart, I had a reaction that could be described as both stereotypically gay and snobbish.

I thought:

Oh.

That's tacky and sort of pathetic.  How come Autism Speaks always gets down scale partners like Walmart and White Castle?  It's like they want to be Komen for the Cure's lowbrow baby brother.  Well, at least it's better than the meat-and-grease scented candle.

 

I posted Paula's picture on the thAutcast Facebook page because I thought the items were an interesting curiosity. Without comment because I thought she had an interesting point of view on it, although one which I did not especially share:

Acceptance? Really? You have to be kidding. Autism $peaks is now in the "acceptance" business. Autism $peaks' marketing slogan for this is "Acceptance and Awareness just got a little easier in our schools.. Autism Speaks school supplies available at WALMART!"

These are available in the *school supplies* section of Walmart. This photo is from my local Walmart. These are being sold in the school supplies section because, you know... children and autism are totally related. Lots of children will probably want cool school supplies with blue puzzle pieces on them. Puzzles are fun, right? Kids like puzzles. For those kids who don't like Autism Speaks, or don't want "autism awareness" shoved in their faces at school, this is going to be a problem.

And all hell broke loose.  Lots of anger. One person asked if Paula was human.  People are still leaving comments and we're approaching 300 of them.

I guess I should not have been surprised, but I was.  I posted a link to this video of GRASP's Michael John Carley explaining "The Comic/Tragic Politics of the Autism/Aspergers World" because I think it provides the best explanation of why there is a longstanding conflict between Autism Speaks and autistic self-advocates. 

I signed Paula's petition.

And then I was ready to move on.

My friend Jennifer is very excited by some of the things that she saw and heard at the recent Autism Speaks conference in Chicago.  I'm hoping that she will write about it here, because I think there is genuine positive movement within AS that I want to recognize and encourage.  That's what I was thinking regarding Autism Speaks yesterday.

And then Paula posted something else about these "school supplies" (which really look more like "office supplies" to me, but Autism Speaks is calling them "school supplies").  They all prominently display this message:

Every purchase supports Autism Speaks, the largest research & advocacy organization. 
www.AutismSpeaks.org
6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism. 

Them's fighting words.

Autistic people have been asking Autism Speaks to stop using the cure language since long before there was an Autism Speaks.

If you don't understand what that previous sentence means, I beg you to click here and continue.

The back of my pack of Autism Speaks pens.

Here, again, is that same talk by Michael John Carley.  I've cued it up so that it begins with his discussion of why the word "cure" is so problematic.

 

Watch the entire video and download the slides here.

 

The c-word problem begins in the 1990s, with CAN and NAAR, autism research-focused organizations which used the word "cure", as Carley says, incessantly.  In 2001 and 2002, autistic self-advocates approached those organizations and asked them to stop:

Would you please not use that word? It makes me feel bad...  We're at a psychological disadvantage enough as it is. . .

In private, the organizations felt that the word "cure" was essential to raising both awareness and money, but their choice was to ignore the autistic people who contacted them with concerns.  And that choice helped to create a poisonous relationship that continues to this day.

Bob and Susanne Wright started Autism Speaks in 2005, and eventually both CAN and NAAR merged with it.  Carley rightly gives the AS founders credit for wanting to change how the general public understood the behavioral differences of autistic people.  Awareness.

However, he also corrects a common distortion of Autism Speaks history.  Most people will acknowledge that the videos Autism Every Day and I Am Autism included some damagingly negative material, but many AS defenders claim that they are the extent of the negative messages that have come from "the largest research & advocacy organization."

No.

Bob Wright used his connections as a former NBC executive to launch his new charity with two weeks of special messaging on the network.  Much of the awareness spread was helpful, some was harmful:

But the very first words of that NBC campaign was a father saying these words "To me, it was like a little body without a soul." And you had really grim music playing underneath.

Carley explains that he was working with autistic youth at that time, and that this is how they reacted when he played them that clip:

There were cries of uproar.  There were statements of either "Wait a minute-- I have a soul." Or "I thought I had a soul."

GRASP, Carley's organization, reached out to Alison Singer, who was the first employee of Autism Speaks and later left to start the Autism Science Foundation.  He wrote a letter that appeared on the Autism Speaks website, explaining why his group opposed the word "cure" .  She wrote one titled "Cure Is Not a Four-Letter Word" that GRASP published.

And my point in relaying all of this?

Autism Speaks has been aware that the word "cure" is one that many autistic people find very problematic for a very long time now.

Bringing it out as a slogan comes across as a hostile act.

I had a hard time believing they would actually do it, especially since things seem to be going in a good direction.

They wouldn't really make the one language choice guaranteed to take everything back to square one, ten years ago, would they?

So  I decided I had to check it out for myself and I convinced my friend Kathryn to go to Walmart with me.

They didn't have the "Autism Speaks school supplies" out, but a nice guy named Juan pulled out the box and showed us the stuff.

It all has the tagline about Autism Speaks being "dedicated to finding a cure for Autism."

Now, even I think there was some justification to using the word "cure" ten years ago.  Scientific understanding of autism at that point allowed for the possibility that it might be some sort of disease.  But, again as Carley says above, we know now that autism is largely genetic in nature (which does not always mean hereditary):

You're born with it, and you're gonna die with it.  Life can improve dramatically along the way, you know, but this isn't going anywhere.

When Autism Speaks talks about curing autism, they should know that they are creating false hope, because they have paid for much of the research that has shown that autism is not the sort of thing that you can cure.  You might be able to create a prenatal test for it, but that's about it.  Cure talk makes parents vulnerable to dangerous quacks.

The other c-word problem that Carley talks about is respect: it's just rude to talk about autistic people using terms we have vocally rejected.  To me, someone who talks about "curing autism" is like someone who talks about gay people having "alternative lifestyles."  Some people really might not get it, but people who make their living working with the LGBTQ community should know better.

So should Autism Speaks.

Because I think this return to cure-based rhetoric is genuinely disturbing, I am going to ask you to sign Paula's petition, too.  And maybe send a really polite email to Autism Speaks asking what message should be inferred from their use of "finding a cure for Autism" as a slogan.