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Tuesday, November 12, 2013

A View of Autism Speaks From Afar.

I know, I know, I said just a few blog posts back I was staying out of the macro autism stuff and sticking with family related topics. But I want to join the growing chorus of voices speaking out against Autism Speaks. A large American organisation that has the potential to do so much good, yet does so much crap. In a nut shell, my personal view from afar is, the co-founders of Autism Speaks, Bob and Suzanne Wright, need to shut the fuck up about autism until they work through their own issues. The catastrophic tirades need to stop. You're scaring the hell out of people, and dehumanising autistics. You know? Those autistic people you claim to support?

 In case you missed it, here's the pile of dung Suzanne wrote recently,

I'm not going to retrace the history of the organisation here, I'll just link to some of the blog posts doing the rounds currently instead. But before I do that I'll remind people in the spirit of blogging more about my own mob, of what we, a family with two kids on the spectrum did just a few months ago. We went holidaying to Europe.

Our lives are not tragic. We are not trapped by our children. We, is my husband and I because yes despite claims by Suzanne Wright my husband and I are still together, just like most of the parents I know who have kids on the spectrum. We are a happy bunch for the most part. Sure there's challenges  the average family don't have to navigate.  But divorce, poverty, depression and whatever other calamity AS claim befalls any family where autism comes knocking is not the whole story. NOT EVEN CLOSE.

Sure parents have a right to feel sadness for their autistic kids. See my last post for my thoughts on grief. But the diabolical picture presented by Autism Speaks does nothing to help. If anything it compounds fear and grief, and parents really don't need the additional emphasis on the negatives from a organisation set up to support families. Compassion and understanding yes, perpetuation of worse case scenarios as the norm? No. Also, autism isn't child specific. Our kids grow up to become autistic adults, so shut up about the stolen children will you?

Anyway here's some links.

If I've missed any other links worth sharing please feel free to add them in the comments below.


  1. I'm genuinely curious: What do you think shaped the Wrights view of Autism? Is it because they are grandparents? Because my parents are the last people in the world who I would want advocating for me. They were and are so negative, and blame the kids for their autism. And I know part of it is a fear of getting 'stuck' with them. Or is it really really bad PR advice?

  2. Maybe some clue. Their daughter believes her son's autism is vaccine induced. So they have a natural leaning towards a disease model I suppose. Also, the fear narrative generates community sympathy/support I suppose, so they keep playing that angle by assuming it's the best way to secure donations and ongoing gov. funding.

  3. Hi. Thanks for bringing this up! I have two autistic sons, but I rarely visit to Autism Speaks. My sons are perfect and I love them just the way they are. But, they're extremely high functioning, and we have a lot of help (and I mean, a lot! 3 much older siblings, a nanny, and my mom, in addition to my husband and me), so we have the room to breathe. Anyway, I wonder if there would this much outrage if this article were written about cerebral palsy. I'm guessing not, because it's well understood that most cases of CP are preventable. Therefore, CP is not an intrinsic characteristic; it is a disability that could have been avoided. I think the debate comes down to whether or not you believe that autism is genetic or environmental. If it's environmental (vaccines, aluminium, etc), then we have a responsibility to try to undo the harm we've caused? My boys are only two, and I don't know what I believe yet. But, I do think that there has to be a way to plot a path towards autism prevention that doesn't demonize autistics.

    1. Hi Femi, I think the issue of how we experience autism directly and think about its causes does influence our broader perception of it. However in the case of Suzanne's letter the problem is really about dehumanising language. Regardless of how you think your child came to be autistic they are still entitled to respect.
      But you're correct that if people approach autism from a disease model perspective, and I understand why some parents might do this, then it's hard for them to understand why we have such an enormous problem with the way AS talks about autism.
      Thanks for stopping by Femi.

    2. I can tell you that my best friend, who has CP, would be outraged if people talked about her like that. I would also hate it if people talked about my brother's depression like that - mainly because my brother already feels like a burden on us, and I want to fight that thought pattern, not encourage it.
      It doesn't matter what condition they're talking about. This kind of rhetoric only hurts - it doesn't help.

  4. And sorry for the typos and poor grammar - I hate that. I'm typing on a cellphone with a two-year old climbing on my head!

  5. Great articlet!! Just popping over from the flash blog link and thought I'd respond to your invitation to hook up other posts. I think this one might be relevant as well:

  6. It is good to have most of these articles around to maintain the regular flow of information. Help people that no one could do it later, good work!

    autism in ireland & HSE autism

  7. I love that Ricky Martin reads your blog. Thank you for coming out Ricky. These hips don't lie

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