Autism Speaks is at it again towards self-advocates.

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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.”

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

12 responses »

  1. I have a personal grudge with Zach from AspieWeb, however it’s really sad that Autism Speaks is going after him for, well… nothing. They hate self-advocates. That’s all there is to it.

  2. Yeah, and I’m often reminded that it’s really important to get beyond personal grudges with this sort of thing, too.

    I’m not talking about where someone has done something terribly wrong to someone else on a level where other people shouldn’t be liking or trusting them, and it interferes with the work being done.

    But communities focused on advocacy, if they’re held together entirely by who likes who, and who doesn’t like who, then they get split up into all these little pieces until they’re no longer political communities, they’re just a bunch of cliques.

    That’s why when I read the Harry Potter books I loved how the Order of the Phoenix always tried to work together even if they couldn’t stand each other on a personal level — it’s not that everyone has to like everyone else, but that in this work people have to put personal likes and dislikes behind them when they’re truly irrelevant to a task and nobody’s safety is at risk and so forth.

    And one thing I fear that might be true about the autistic community, is that many of us have so little experience as actual participating parts of communities, that we’re only finding these things out as we screw up at them, and while other people might never figure it out, they still have a head start on us on the experiential end a lot of the time.

    I certainly didn’t realize how important that stuff was until I’d done a fair number of destructive things of my own that way and saw the consequences. And I never had the opportunity to participate in something to the degree that would allow a person to notice things like this, until I was an adult.

  3. That is pretty messed up what Autism Speaks ™ is doing. I don’t have any fondness for that organization and the more I find out about their legal tactics, the less I care for their actions.

    Maybe we should all get that teeshirt or similar and see if we can get arrested for violation of the Autism sQueaks trademark.

    Great Job Amanda!
    spike

  4. How strange… Maybe I’m just an “innocent Aspie”, but the degree to which people are bound and determined to dehumanize us is just mind-boggling. It’s almost as though the folks over at AutismSpeaks are trying to exact some revenge on their children for turning out “wrong”. Just look at the profiles of the folks who are active in the organization — former high-level managers for multinational corporations and what-not — see http://www.autismspeaks.org/leadership.php and read carefully. E-gads!

    As far as I’m concerned, they might have had their children for the sake of public approval — classic case of having Trophy Children, which I’ve seen so many times — and then been so humiliated and horrified by these “odd little creatures” who showed up in the place of the perfect little boys and girls they thought they were going to get.

    Consider the source. Embittered parents who — like my own parents — were/are humiliated by their own children’s differences. Maybe this is an oversimplification… nor not. It only takes one of us to spoil the picture-perfect batch of dna-carriers. And think of the trauma we’re causing everyone!!! (I’m being facetious here — but some days I feel like I’ve just been through too much crap from NT folks/relatives to be really polite and understanding.)

  5. Speaking as a parent of an aspie, I want to address some of the comments.

    It had never occurred to me EVER that Autism Speaks does not speak for the entire Autism Community. Never in a million years. Until I read Kristina Chew at Autism Vox.

    I learned, through others like Kristina, that there is a whole different side to Autism and that this side is being bullied into silence.

    I am grateful from the bottom of my heart for this blog and others like it.

    You are teaching me and will be enabling my son to be strong and to have a voice of his own.

    Keep up the good work!

  6. Unlike the previous occurrence where, despite their reprehensible actions, Autism Speaks seemed to have a point about copyright/trademark infringement (at least as I understood it; but then I’m not lawyer).

    But this is just ridiculous. They are actively trying to quash any opposition to their profits and dissemination of their goals and philosophy. They own the media, they own research, and now they’re trying to own the internet.

    They’re the Walmart of the 501c’s!

  7. I wonder if one motive they have is so they can have a clean group of stereotypically “bad-looking” autistics to generate sympathy and hence dollars for their “work”/”wallets”. One of the toughest punches to take is in the wallet and so they know that to justify their “vision” and hence “life’s work” (and income) is to defend it viciously against anyone who would “dilute it”. They’re one part greed and one part intolerance. I sometimes doubt though if their world vision is truly a world free of autistics but rather a world full of donating parents. For the true believers in the group, its probably parental desperation factor and a culture of loyalty which comes from that “investment” into treatments and cures. These groups like GRASP will play word games around this but the defense mechanism is the same of defending one’s own bets and hopes.

  8. I’ve found out something in associating with some parents out there, a paying parent is a parent of a “low functioning” child or they are considered “cured” (and the only worth to the organization now is for them to go on the lecture/marketing circuit).

    I do wonder however how many parents have gone through “cure” sessions and later had a “too high functioning” child and at that point, saw the light as to what the organizations were really up to. Soon, many more of these kids will be adults who are no longer able to pay and be “high functioning” “Asperger Syndrome” adults (or mentally retarded if for any reason they don’t adhere adequately enough to regular living. Oddly, I know one guy who was “low functioning” then got married as “high functioning” and due to stress, went back to being “low functioning” mostly based on easy and difficult periods in life. Too many people I know don’t fit in a bucket or are able to radically move amongst them. I suppose I’ll be “low-functioning” soon myself as I’m getting burnt out again at work.

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