Daily Archives: June 20, 2008

Autism Speaks is at it again towards self-advocates.


Updated to add: PLEASE READ MY APOLOGY AND RETRACTION. Autism Speaks did not do this this time. Anything not pertaining to Zach’s t-shirt is still a concern, but the thing with Zach’s t-shirt is no longer a concern. Please read my retraction for more links on the topic.

Probably everyone remembers what happened to that teenage autistic girl who made a parody site of Autism Speaks called “NT Speaks”. It’s preserved here, on aspiesforfreedom.

This also prompted Larry Arnold to secure the domain autismspeaks.eu, where he comments:

This domain is owned by Laurence Arnold FRSA. who asserts the principle that here in Europe, Autistics speak and when we do, we should be listened to.

He explains his decision here, and notes that he won’t use the site for NT-bashing, just for autistic self-advocacy.

Well now, Zach from AspieWeb has made t-shirts on Zazzle that contain no logos or any other copyrighted material from Autism Speaks. They read:

‘Autism Speaks’
can go away
I have autism
I can speak for myself

Zazzle sent him a notice saying they violated a copyright and were taken down for that reason. Of course they didn’t violate one, but a lot of us were wondering if Zazzle had just autosearched for what they thought were copyrighted stuff or something.

It turns out that’s not the case. Zach wrote to Zazzle to ask what was going on, and Zazzle’s Content Management Team wrote back to Zach saying, in part:

Unfortunately, we have been contacted by Autism Speaks Inc. and it was requested that these products be removed from Zazzle.com. At the risk of legal action taken against Zazzle and yourself as a contributor of these products, it was decided that it was in the best interest of both parties to have the products removed from the Zazzle Marketplace.

So it seems that Autism Speaks is forming a pattern here of trying to silence autistic people who disagree with their goals, methods, or other aspects of the organization. What on earth does that say about their level of respect towards autistic people?

I’d always thought that their famous “articles of understanding” with GRASP were merely to say that they’d “dialogued” (or some other pretentious buzzword that’s good for PR) with autistic people who disagreed with them, while they could either ignore or try to silence the rest of us.

Especially since they trotted out the old cliches and stereotypes of the disagreement ather than having anything as “productive” to say as they claimed to have.

For instance, their first “article of understanding” was a note by Ami Klin that autism is extremely variable. This apparently set the stage for the idea that the reason that there are so many different opinions on autism is that there are so many different kinds of autism, and that different kinds go with different opinions.

Nothing I have seen among autistic people’s opinions about autism has ever truly followed that pattern, but it remains one of the most common myths about the entire debate. It’s also a fairly offensive myth, in that. Because what it says, is that autistic people are not able to form our own opinions politically. It says that the only reason that we have different opinions is because our neurologies dictate it. Not because we have been, or not been, exposed to various information, leading us to make various choices about what we believe. It denies autistic people the agency that we truly have in deciding what our opinions are.

As Cal Montgomery said in Defining Autistic Lives, after a wonderful set of descriptions of the limitations of using functioning level labels to describe human beings:

I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.

Then, in Alison Tepper Singer’s contribution to the Articles of Understanding, she wrote things like the following, about her daughter:

It is hard to consider her “differently abled” because she is not “abled”.

I’m not too fond of the term “differently abled” either, but it’s pretty offensive to say someone is not “abled”.

She also says, after wondering out loud whether the spectrum is too wide by including Asperger’s at all, that Autism Speaks focuses on the “low functioning” end of the autistic spectrum. If this is so, then they shouldn’t be using the number “1 in 150” or “1 in 166” in all their advertising. These numbers explicitly include people labeled with Asperger’s and other people labeled high-functioning. You can’t use a set of people to get money for your cause and then claim that they aren’t the ones you’re talking about.

She also says that parents of “high-functioning” children just naturally don’t want to be associated with autism because of the stigma, and therefore aren’t involved in her organization. That’s just not true. A lot of parents active in parent groups have children who would be considered “high-functioning” by most definitions. I know some who’ve tried to contact Autism Speaks only to be brushed off and ignored. I know parents of kids considered low-functioning who’ve tried to contact Autism Speaks only to be brushed off and ignored.

She also says that attracting parents who have “low functioning” children is why they have so many parents who are in search of a cure. That’s not true at all. I know parents of non-speaking children who have tried to contact Autism Speaks over and over again and gotten nowhere, not because their children were too “high functioning,” but because they disagreed with the idea of curing autism. The idea that people with “low functioning” children all want a cure is as nonsensical as saying all autistic people labeled “low functioning” want a cure.

And the rest of what she writes is full of statements that are completely mischaracterize people who don’t want to cure their own autism or their children’s autism, and suggests again that, despite using the “1 in 150″/”1 in 166” numbers for fundraising, most of those “1 in 150″/”1 in 166” don’t actually count for anything in their organization. The letter is not an article that shows any understanding of anything except how to deftly manipulate people’s stereotypes so they will have a nice neat little category for anyone who happens to disagree with Autism Speaks.

Meanwhile, when autistic people actually speak out against their organization, they don’t listen, they don’t understand, they just try to silence us. Autism “speaks”? Yeah right. More like the same old same old catch-22 — “If you can’t speak, we speak for you, if you can speak, we’ll try to silence you — but we’ll use you in our fundraising statistics nonetheless.”