My Letter Today To My College on Autism Speaks

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My school, the George Washington University, has an initiative on autism that has worked with Autism Speaks for several years for this 2 April day event. I am putting my letter in below and will let you all know what they say. No need for comment -- though please correct any mistakes I may have made. Of course, please comment if you want to! Anyway, I just wanted to post this here so others would know about this kind of thing.

Here is the letter I wrote them today:

Hi AND Initiative Folks,

I'm an autistic GWU student, and I was surprised to see that my school has a connection to Autism Speaks, an organization that the autistic community has overwhelmingly spoken out against as presenting misinformation and hate speech on autistic issues.

I am shocked at this group's successful co-opting of the public's goodwill under what appear to be false pretenses. The autistic community finds this group to be offensive, both in the harmful and disrespectful treatments they recommend to parents and in their labeling of our condition as a disease.

According to public records, Autism Speaks allocates only 4% of its funds to helping autistic individuals, while it promotes dangerous treatments, such as shock therapy and anti-vaccination campaigns, and its leaders have made comments denigrating people with autism and even shown understanding for killing an autistic child. At the same time, the group has no autistic individuals on its board or in any decisionmaking capacity.

While I'm not as articulate as some others, I urge you to read some of the many statements against Autism Speaks by autistic groups and communities. This is a good example, and it links to many more:
http://autismwomensnetwork.org/to-the-c ... sm-speaks/

Here is a link to a boycott that many corporations have signed, saying they will not be affiliated with this group:
http://www.boycottautismspeaks.com/home.html

I believe GWU is on the wrong side of this issue for the best of reasons -- wanting to show support for autistic individuals. Boycotting Autism Speaks and supporting more positive groups that work with autistic individuals instead of against them is the best way to show that support.

The letter looks great to me and I'm a stickler. Thanks for taking initiative in your real world community for the benefit of all of us in this online community.

Perfect! Good luck in getting a prompt reply. I hope that your message will convince university staffers to choose a different approach for future autism events.

I'm going to send a letter to the West Montreal Readaptation Center/Centre de Readaptation de L'Ouest de Montreal about THEIR loose, slight affiliation with AutSpeaks. I'm going to list all the reasons AutSpeaks is bad.

It's a good letter. I would recommend adding a link or listing the names of some autistic charities you think they should work with instead.

Thanks, everyone. They have not responded yet.

I did think of adding other charities...perhaps I'll do that if they respond.

Anyway...I happened to see Whole Foods is also supporting Autism Speak's blue day thing. I don't have the energy to write a million letters, but this whole situation bums me out.

I personally have lost any and all respect for Autism Speaks.

I really appreciate your initiative in writing the letter, making clear and important points about the situation.

I think it's great. You're writing is effective, neutral and factual. I think many people just don't understand the perspective and so providing this information is great.

Well done!

Keep us posted! I would love to know if and what they write back.

Nothing yet. Is it worth being pushy about this? I am really not sure.

Anyway, to paraphrase Virginia Woolf: that a famous university has been cursed by an autistic woman is a matter of complete indifference to a famous university.

Excellent! The more people take the initiative, as you have done, the better. Good letter, good luck with your studies.

If you would like your letter to have more of an impact, perhaps you would like to consider asking your university's campus newspaper to publish it. Therefore many more people will be able to see it and comment on it, making it far more likely that the administration will actually notice it's a real issue.

That's the one part of the letter which caused me to raise an eyebrow. I'm not saying Autism $peaks hasn't done this, but perhaps a footnote would be good on this part.

And the letter by John Elder Robison I think is pretty powerful stuff, on why as a person on the spectrum he tried to serve as a board member hoping the organization could change and adapt, but then felt he had to resign. All the same, there's a lot of pretty powerful stuff, and it's your judgment call on what to include.
(and yes, Robison is the correct spelling of the man's name)

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I am pro-vaccine. For example, I think a malaria vaccine would be a tremendous benefit to the human race. At the same time, not the thimerosal preservative which has been pretty well looked at, but that a vaccine can very occasionally cause a funky autoimmune response, say something like Guillain-Barré syndrome, that I think is something still worth looking at.

Institutions certainly seem interested in their own smooth functioning! Now, don't they? And I suppose this also applies to small institutions.

Perhaps just a follow-up email. And maybe the immediate goal is to just get them to listen to the autism community more broadly.

I have done peace activism off and on for a long time including the first Persian Gulf War, build-up in 1990 with the war itself in '91 (and the continued embargo afterwards including on things affecting food and medicine which may have actually been the worse part). And yes, I'm very aware that it was a popular war, and the fact that history may not always view it as such is actually pretty thin consolation. Activism is hard work and lonely work. And I think even lonelier the fact that I'm spectrum and did not really connect with too many fellow activists. and the very few kind of beginning stages of friendship did not last too long, and that hurt, too.

I try not to do things out of a misplaced sense of obligation for that's often dry as dust. If it's something that I'm down for, win, lose, or draw, or something I'm energized about, that's a different story.

For example, Molly Troubletail puts forward the excellent possibility about sending your letter to the school paper. And it's possible your letter will be widely misunderstood with a dozen angry responses. More likely, it will be completely ignored. So, let's say you're mentally and emotionally prepared to make one reply to what you view as the most important response to your letter. And you've kind of made that good strategic next step decision. But then there are no responses. And that's kind of exhausting, too. To be up for potential public debate and dialogue, and then nothing happens. Of course, people still read the letter and think. That's a positive. And it does some good even if you make the conscious decision not to check the in the following days for responses.

If you can find one real live co-activist on campus or even just a person interested in seeing you getting a fair shake, that can be a real help. But that can be easier said than done. And often I'm not real good at letting people know my personal boundaries, including that I need boatloads of alone time.

It goes without saying that we at Wrong Planet will continue provide solidarity and info to the best of our abilities!

You guys are great, and I appreciate your advice very much. But...

1) I don't have the stamina/backbone for activism. I get too emotional and flustered too easily, and then I get sucked into a whirlpool of emotions.

2) I am not officially diagnosed as autistic, although two pretty serious psychologists I have seen have said they believe I likely am, I score highly on every reputable (and nonreputable) test I've taken, and my mother told me she has thought I am for years. (Though none of these are an official diagnosis.) I don't want to publish info that is only a qualified truth.

3) I am not "out" as autistic at work, nor am I permitted to publish without permission. Work would need to approve my letter first, so I could maybe publish it next year if they hurry.

4) I have no idea what I'm talking about and don't want to take this on as a special interest. I don't want to commit libel and until I research all these facts personally, I can't be sure I'm not. I was nervous about just the email, actually.

5) I live in Japan and am not physically located on my campus.

I could push past all of this, but I am struggling to enough focus and energy to do my job. I think a follow-up letter may be something I could manage, though. I'll tweak it per your advice first, though -- thanks.

On a different note...

Interesting -- I was also baffled about why people supported all these wars. Now that I know I'm autistic I kind of think there is something that allows us to not get as wrapped up in these big mass patriotic movement unless we are also intellectually behind them. I was surprised that I was the only person I knew who wasn't angry after 9/11 -- just very sad -- and I saw our wars in recent years as pointless and confusing. I have an advanced degree in international relations and spent the actual day of 9/11 one block from the White House, so I'm not a total idiot about this issue, either. But somehow all of American society seemed to make me feel like an idiot, and I learned to just shut up about my views.

Anyway, I do appreciate your support for humanitarian causes, but I will get of my (possibly divisive) soapbox now.

You could mention something about the U.N.'s statement on ABA.