Why I Reject Autism Speaks

A couple of months ago, my brother sent me a text. Did I  want to go to the Autism walk with him and Em?

I did a quick google and found, as I had suspected, that the benefactor was Autism Speaks, and I responded in the negative. I also did my quick bullet points of reasons not to support them- not even the in depth version, just the elevator speech version. I also did another focusing on their media presence. Here’s a transcript:

Me: They promote a tragedy model of autism and act like the desire to murder your kid is understandable to have? Also they refuse to have any autistic people at all on their board and the one guy who was on their advisory quit because they didn’t listen to anything he told them. Only 4% of their budget goes to families. Most of the money doesn’t make it back to the communities it comes out of. Instead it goes to their media machine.

Wil: I see that’s lame as hell we were going to go but not anymore that’s way messed up.

Me: Next [time] you are on YouTube google Autism Every Day to see a mom talk about wanting [to] drive herself and her kid off a bridge IN FRONT OF SAID KID and not doing so because of her non-autistic child. Or the I Am Autism one where they took film from families not telling them that the voice over would be about autism destroying families. <3 [heart emoji] Thanks for listening!

Wil: Yeah I’ll check ’em out thanks for the info. We were gonna take her parent’s car and go ‘n bring you along but after hearing all that we were both like nooooope.

This was one of the LEAST difficult attempts at educating people, and I didn’t even have to drop in too much detail.

I didn’t have to talk about their allowing the JRC to advertise at their events. The JRC uses painful skin shocks on students with disabilities. It deprives children of food as punishment for even small behaviors. It has been called a human rights violation by the UN’s torture investigator.

As for the guy who left their advisory: He posted an open letter when he left.  (He might still retain hope that they could reform, but I don’t.) It was the science advisory, by the way- not the board. I have seen some people thinking that it was the board, but it wasn’t- there’s never been an autistic on their actual board.

While I mentioned that only 4% (really less than) of their budget goes to helping autistics and our families, I didn’t go into details about how they spend more on catering. I didn’t note that “fundraising” makes up 25% of their budget, and Advertising and similar “awareness” another 30%.

I didn’t note that the research they fund goes towards eliminating people like me. I didn’t mention the prenatal testing research that they’ve supported, or how if they find a successful test it will eliminate people like me before we are born. (Similar tests for people with Down Syndrome? 9/10 times, the parents become convinced to abort the fetus, often due to misinformation about Down Syndrome.) I didn’t mention that their research projects don’t take privacy of autistics seriously. It doesn’t take the idea of autistics giving informed consent seriously either. Only between 1-2% of their research funding goes towards quality of life related research that would help autistics today.

I have a strong belief of “Nothing about us, without us.” And that alone would be enough for me to reject Autism Speaks. But the way that they treat us, the way that they treat hating us, pitying us, and getting rid of us? The way that they manipulate our families? That really does seal my rejection of them.


Please check out the #BoycottAutismSpeaks flashblog for other people’s reasons to oppose Autism Speaks.

Here’s the most recent letter from ASAN to Autism Speak’s Sponsors about why they should drop their support.

Here’s GoldenHeartedRose’s Master Post about Autism Speaks.

Here’s the stuff AutisticHoya has written about Autism Speaks.

Here’s my older post about rejecting Autism Speaks, “Why I’m Not Blue.

Backlash and a Few Days Out of the Loop

I went to my grandmother’s for a few days (also: caught a ride to my blood work appointment) and the timing for that was SO not right. But I think I needed it (as it’s too early to see results for a new med) as I’m feeling a lot better and more prepared to do something other than sluggishly struggle to fit thing together.

A lot has happened since I went to Grandmother’s.

A good and comprehensive round up can be found on Liz’s I Speak of Dreams. Please contribute to her round up if you have anything! Also, my friend C1audia has an open letter on her blog that Is a good read. (C1audia is awesome, and I recommend you give her whole blog a look. )

I don’t always agree with The New Republic’s style (I’m too bleeding heart), but I do agree with their latest post– and am tickled by what it has to say. First of all, A parody called “I Am Autism Speaks” was put on youtube supported by them. Here it is:

It promptly knocked The AutSpks “I Am Autism” down in youtube ranking, and caused the PR firms to panic. They’ve been tracked on the New Republic site. In addition, Autism Speaks UK has choosen to disassociate itself in the following manner:

..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..


I’ll try to keep up to date on this matter.

(sometime later in the evening)

So, New Republic is currently the number one Search Result for Autism Speaks on Google Blogs. (you can either click on the above link or here for a screen cap.)

AutSpks Once Again Demonizes Autism

I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up

The Run Down

AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.

Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.

In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”

Wording means everything in legalese.

The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.

The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)



My response (in 500 chracters or less, as that’s Youtube’s character limit):

I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).

I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.

I am offended, & must say that AutSpks does NOT Speak for me.

I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.

I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.

Community Response (Or the Round Up)

The community has had a huge response. Here are some responses (and feel free to link me to others!)

Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.

. . . As well as on the use of the Embaressment Trope and a script for a parody.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an “I Am AutismSpeaks” script.
Codeman38 has posted on his own blog.

-I left to visit the afore mentioned Grandmother, and it went on!

* I have saved these to my harddrive in case of site take down.