What People are Saying about Autism Speaks: Fact or Fiction?

28 Sep

To be honest, I’ve always viewed Autism Speaks in a negative light, an organization that seeks mostly to cure autism and rarely to embrace the strengths and uniqueness characteristic of all individuals on the spectrum.

I decided to pose this question on — I know what you are thinking: some “real”, high-quality research I performed (sarcasm). Despite my rudimentary research, I found this very question posed on a favorite site of mine: Wrong Planet. On this site, I found some very interest opinions.

“Autism Speaks is almost entirely bad. Even the PSAs paint autism as a horrible thing, something that we have to get rid of and squash out, something that breaks up families, turns children into unresponsive automatons, costs money, and ruins lives. They are overdramatic, and in the name of raising awareness they make people believe that a life with autism is hopeless, joyless, and a burden to everyone around you,” says Callista.

Further, DandelionFireworks believes, “Autism Speaks is in it for the money.
Honest curebies make me laugh, but they at least have ideals that they cling to. They often truly want what’s best for their children. I’ve seen that firsthand, and I’ve seen the good that curebies can do. Autism Speaks, however, doesn’t care about our welfare. They just want our money.”

I could fill countless pages with not-so-flattering commentary about Autism Speaks. On the other hand, I did manage to find this:

“Autism Speaks funds the research study I’m in at the U of Pitt,” wrote SuperTrouper. “They’re using Cognitive Enhancement Therapy (attention, memory, and problem solving training on the computer plus small groups to improve social cognition) to help adults with autism. One of the researchers told me that they do not seek to cure us but to make our lives easier. I don’t think they’ll rewire our brains in an 18-month study, but they’re certainly not harming us and it just might do some good. Right now the study has 14 people as the pilot, but soon it will have I think 60, and that’s the part the Autism Speaks is funding. Just making a point that things aren’t really so black and white, and as such, this organization is not all bad.”

My overall impression is that parents, newly diagnosed or not, are highly supportive of Autism Speaks. Auties and aspies seem less excited about the possibility of losing (read “curing”) what defines them as a human being. I’m not sure if I can make an appropriate comparison that NTs will understand and auties and Aspies will respect. So, perhaps you can?


Posted by on September 28, 2010 in ASD in the Grand Scheme


2 responses to “What People are Saying about Autism Speaks: Fact or Fiction?

  1. Shannon

    September 28, 2010 at 10:37 PM

    I think we need to take a more big-picture approach to Autism Speaks, and I write that as someone who has criticized their actions openly and frequently. We need to be the change we want to see and all that, as John Elder Robison showed by joining their board. Wrote about it a bit at BlogHer:

    They have demonstrated that they are open to projects like helping fund the YouTube channel (which I adore). Such actions gives me hope that they’re open to the changes their members and our community want.

  2. Emma Apple

    October 14, 2010 at 7:26 PM

    Geat article Shannon, thank you!

    I think people maybe need to step back and try not to take the whole ‘cure’ thing personally. There is good that comes from research and initiatives by Autism Speaks and I think we can embrace that WHILE we disagree with the ‘cure’ idea.

    Many of the ones who want to cure it, or say they have cured it, have said by cure, they don’t mean being rid of it, they mean no longer being limited or disabled in any way by it, becoming ‘sub-clinical’.

    I think many people choose to be offended by the notion that it’s a disability, but also acknowledge that it can be a disability in some cases and in some situations and in some ways for some people.

    We all know Autism is a spectrum, one that varies widely from person to person even at the same place on the spectrum, so we can’t take one persons ideal of what’s right for them (whether that is cure or embrace) personally, because my Autism or my Child’s Autism, is not the same as yours or your child’s Autism.


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