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.