Whose Planet Is It Anyway?

Friday, September 25, 2009

Autism Speaks Deceives Parents

As a recent post on the Left Brain/Right Brain blog pointed out, Autism Speaks engaged in a "bait and switch" when Suzanne Wright asked parents to contribute video footage of their autistic children for a new project, without disclosing any of the nasty details of what she planned to do with it. Would the contributors to the "I Am Autism" video have agreed to participate if Autism Speaks had admitted at the outset that it was planning to demonize autistic kids as embarrassing burdens who destroy their parents' marriages and dreams?

Well, at least one parent who posted a comment on the video's YouTube page, under the name BarrysDaughter, made it quite plain that she felt deceived by Autism Speaks' request for video contributions from parents. She wrote:

"I do have 2 autistic children and a husband on the spectrum. When they first suggested a video I was eager to send them one till they outlined what they wanted.

My children and husband don't want or need to be CURED what they do want is people to treat them the same as anyone else, stop the bullying and put more staff in schools to support them…"

How has Autism Speaks managed to get away with exploiting so many parents and taking their support for granted, while draining large amounts of money away from their communities and increasing the stigma and prejudice faced by their families? The answer seems to be that Autism Speaks has artfully packaged the fundraising walks as feel-good social events, thus creating pressure for people to attend because their friends are doing so, and never mentioning the fact that almost none of the money raised goes toward community services and supports. Here's a quote from a blog post written by a mother, Ange, explaining her reasons for participating in Autism Speaks walks:

"Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can't stand the organization's scare tactics. But I have walked to support my friends and their families more than anything else. I don't know if can do it anymore. I can't just write this off as fundraising anymore or ignore it while I support my friends. I can't ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscience make my children participate in the walk, enforcing a message that they had no part in creating."

For Ange and other parents in her situation, I'd like to make a suggestion: It's quite possible that your friends and their families have the same concerns about Autism Speaks that you have described. Maybe, in the past, they walked to support you and their other friends more than anything else, while ignoring their qualms about the organization for the same reasons you did. It's understandable that you would worry about how your friends might respond if you said anything to them about your conflicted feelings; but you may very well discover, if you do spend a few minutes talking with them about it, that they're just as upset about Autism Speaks' scare tactics as you are.

There is power in numbers, as we know, and that power doesn't have to stay on Autism Speaks' side forever. If just a few courageous parents take the initiative to start a conversation with their friends about why fear-mongering tactics don't deserve their support, and a few of the friends do the same, and so on—then it won't take long, at all, for the voices of reason and decency to prevail.

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  • If you feel decived by Autism Speaks and disagree with them, protest against them and help spread the word by joining this Facebook group: http://www.facebook.com/group.php?gid=276998370593

    By Anonymous Anonymous, at 5:41 AM  

  • Or send a protest e-mail at
    contactus@autismspeaks.org and post the e-mail publicly on your blog.
    You could also see this page:
    ASAN Southwest Ohio for more information as to what you could do.

    By Anonymous Sadderbutwisergirl, at 5:56 AM  

  • If enough Americans come out and blast Autism Speaks for this, they would be stupid not to back off. Something like the campaign against Ransom Notes would be in order here.

    By Anonymous Anonymous, at 8:26 AM  

  • Autism Speaks deceivers parents?

    And now YOU speak on behalf of the parents for whom you have shown such disdain? The parents who seek to cure their children of their autism disorders?

    By Blogger Unknown, at 9:50 AM  

  • Anon: Thanks for posting the Facebook link.

    Timelord: A Ransom Notes-like campaign is already under way. For more info, follow the ASAN link posted by Sadderbutwisergirl.

    Harold: I speak only for myself on my blog, as I've said on many occasions, and the parents I mentioned in this post are not presuming to speak for all parents. A little more humility from you might be in order, too.

    By Blogger abfh, at 10:22 AM  

  • I did tell my friends, and it was difficult and emotional, because we have a variety of feelings about autism and I am not the 'common' viewpoint [though they gave me a piece of artwork that says: "she doesn't think he needs fixing" so I know my views are not held against me!]. My friends had not yet seen the video, but regardless they supported my decision. From local communications, you can tell that the walk is the one place where people feel like they belong, where people 'get it', the kids have fun with the activities, etc. To many the walk is not about Autism Speaks, but it's about "community", "being part of a movement" and "awareness" and many feel there is "no other option". But to me the sheer number of people showing up feeds the monster, which is why I still won't walk even if I don't raise money. I posted my issues on my FB account, twitter, etc. And I have been beyond outspoken with family and friends [I am sure they are sick of listening to me!]. I will be sending out a walk letter again this year, but it will be a "why I don't walk" letter. I am trying to decide on an alternate organization to receive donations, maybe NODCC. *shrug*

    By Blogger Ange, at 10:43 AM  

  • Ange, thanks for stopping by!


    If you decide to post your "why I don't walk" letter on your blog (and I hope you will), please let me know and I'll give you a link to that post also.

    Here are my recommendations for groups to consider when donating to alternate autism organizations: Autistic Self Advocacy Network, Autism Network International, The Autism Acceptance Project, Autistics.org, Autism National Committee.

    By Blogger abfh, at 11:03 AM  

  • If you are curious about what others are saying about this video, I have a list of posts protesting the Autism Speaks video at I Speak of Dreams.

    By Blogger Liz Ditz, at 11:07 AM  

  • Hey Harold,


    By Blogger Clay, at 4:34 PM  

  • Based on past performance, I think the ASAN is the best place for parents to make donations and with a long term view to making the world a better place for our kids. They did incredible things in the Ransom Notes campaign without any budget. With a real budget (to cover lawyers, PR agents, advertising etc.) they would be even more powerful.

    By Blogger VAB, at 4:35 PM  

  • And now YOU speak on behalf of the parents for whom you have shown such disdain? The parents who seek to cure their children of their autism disorders?

    Doherty, don't push that "cure" line anywhere where I can see it. I'll run it over with a jeep and flatten it as it deserves to be - as an attack on the support structures everyone on the Spectrum (including Connor) has a right to and should get without exception.

    By Anonymous Anonymous, at 8:33 AM  

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