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Why are so many people mad at Autism Speaks right now?

 

Autism Speaks doesn't speak for my children

My beautiful autistic kids: not missing; not a burden

I had a few comments on my Facebook page today wondering why I was posting links to blogs protesting against what Autism Speaks is currently doing, so I thought I’d write a quick primer.

The problem with Autism Speaks

I’ve written before about why I don’t support this organization. Boiled down to headings the four main reasons are:

  • They’re eugenicists (it’s right on their website!)
  • They are anti-autistic
  • The money they raise doesn’t get spent on support or services for autistic people or their families
  • They spend a ton of money on executive compensation and independent contractors

What’s Autism Speaks doing right now to get people worked up?

Two things:

They’ve arranged a “Policy Summit” at George Washington University

Why is that bad? Well, as is usually the case with Autism Speaks, no autistic people are involved, invited or wanted. You can read the joint ASAN-AAC statement on that travesty here.

Suzanne Wright, co-founder of Autism Speaks, wrote a heinous ‘Call to Action’

You can read the full thing here. Jess, who blogs at Diary of a Mom, has tried for years to work with Autism Speaks because she believed their attitudes towards autism were evolving. Her extremely eloquent post about her feelings towards Ms Wright’s call to action can be found here. I strongly recommend that you read that post.

What exactly is so bad about Suzanne Wright’s Call to Action?

After reading Jess’ post you may still be thinking to yourself, “ok, the language is over-wrought and dramatic but that’s just used as an attention grabber! It’s used to raise awareness, attention and money. Think about the ends, not the means, Deanne!” Here’s why that’s not ok:

  • I don’t want Autism Speaks to get more money because they don’t spend the money on helping autistic people or their families. If you follow my blog then you know how passionate I am about AAC. Only 4 cents out of ever dollar Autism Speaks raises is spent on services for autistic people – guess how much of that 4 cents is spent on AAC? My friend Kerima points out in her post here, “no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money.”
  • Autistic children and adults are reading things like this Call to Action and believing that they are burdens; destroyers of families who impoverish the people they love and make them ill. Don’t believe me? Read this.
  • The ripple effect of the sort of language Ms Wright uses is immeasurably damaging. When autistic people are viewed in these terms it dehumanizes them, which makes them easier to abuse and easier to murder.

If your reaction to this is – “got it, what can I do?” then Paula C. Durbin-Westby has handily summarized it for you.

If you live outside the United States, don’t give Autism Speaks your money and don’t ‘light it up blue’ in April. If you live in the U.S. then in addition to those two things, you can contact your congressional representatives and tell them that Autism Speaks doesn’t speak for you or your family – the details of how to do so are in Paula’s blog post above.

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17 Responses to “Why are so many people mad at Autism Speaks right now?”

  1. I was mystified as to how the organisation got this way, but my social worker friend Sharon explained that the Wrights daughter believe the completely refuted vaccine theory so they were influenced towards a disease/blame/cure model.

    My own parents were AWFUL about my kids autism and blamed them for any behaviours they witnessed; so I hate to think what kind of an organisation they would have come up with. (I moved halfway around the world to get away from them)

    Maybe it is time for the Wrights to hand over the reins to the new generation of parents who accept and make allowances and advocate for people with autism to have a better quality of life.

    And to stop wrecking everyone’s heads with what must be self-fulfilling prophecies about lifelong calamity.

    My very autistic daughter learned to speak using her own AAC App because I refused to believe anyone who tried to limit her potential.
    She is still as autistic as the day is long, but she can ask for what she wants independently, she can engage with us emotionally and she lives a very happy life on her own terms.

    She is never going to be teased into having an eating disorder by a bunch of bullies, (she thinks she is perfect) or sneak out to a disco and get drunk on cider or be peer pressured into sexual activity with adolescent boys who watch too much internet porn; all of which are constant worries for my friends with NT daughters of the same age.

    She prefers me, her father and her brother to anyone else in the world and she makes me laugh every single day.

    That is my Autism reality AS, and it is no calamity!

    xx

    November 13, 2013 at 6:54 am Reply
    • Thank you for adding your insight to this issue. It is very disturbing to think that all this “national plan” stuff is going on RIGHT NOW, without us, and that no one in Congress (apparently) realized early on that the people about whom they are all going to have their big summit were left out entirely.

      November 13, 2013 at 10:31 am Reply
      • OMum22 #

        Extremely disturbing. Thanks for all you are doing Paula to bring attention to this situation.

        November 13, 2013 at 1:40 pm
    • OMum22 #

      <3 As for the Wrights, all I know is that they are billionaires and with that often comes a sense of entitlement and a need for control. I don’t think Christian is the grandson they expected or wanted and they are desperate to do whatever they can to ‘fix’ him.

      November 13, 2013 at 1:48 pm Reply
  2. Ooh, very pithy. Definitely adding you to my response here:

    http://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/

    I read a response from a mother somewhere, I think it was on Jess’s blog, about how she waited precious YEARS before seeking the diagnosis of her non-verbal son, then 4 years old, because he wasn’t what Autism Speaks presents as autism. As even the most minimally informed knows by now, autism really is a spectrum and there’s no “typical” autistic child, despite the devil-children Autism Speaks would have you believe are the poster-children for autism. I wonder how many of the children in their videos were taken only at their very worst?

    I used to be cautiously supportive of AS, but no longer.

    November 13, 2013 at 1:34 pm Reply
    • OMum22 #

      Thank you! You’re right, in only presenting the challenges involved in parenting an autistic child, Autism Speaks shows people a completely unrealistic view of what that life is like. The challenges are real (I’ve never seen anyone deny that) but demonizing our kids does nothing to help with those challenges and actually creates a world of harm that our children then have to navigate.

      November 13, 2013 at 1:46 pm Reply
    • Yes, I’ve been wondering, too, if the rhetoric of Autism Speaks is actually KEEPING children from getting the help and support they need…because if their autism doesn’t look like Suzanne Wright’s imaginary demon autism…do their parents doubt or feel justified in not believing that their kid really is autistic?

      December 23, 2013 at 8:02 pm Reply
  3. Thank you, thank you, for this post. It’s so difficult to process all the information out there, and when reading online instead of reading in books, for instance, it’s all too easy to pay attention to the wrong places. It’s very brave of you to talk about this contentious issue and be wiling to deal with the conflict involved – thank you, I REALLY appreciated your take on this sensitive subject!

    I found your article through your blog – great blog, too, by the way! :-)

    November 13, 2013 at 3:49 pm Reply
    • OMum22 #

      Thank you for taking the time to comment Tom, I’m glad you found the information (and blog) useful. I don’t think I’m brave in any way – I do however think the autistic adults who have fought Autism Speaks for years are brave and I’m so thankful to them for speaking out and trying to ensure my children don’t go through all the things they’ve had to face.

      November 13, 2013 at 4:32 pm Reply
  4. Joe #

    You hit the nail in the head! Way to go!

    Autism Speaks do not speak for us. They only speak bigotry, hatred, and hypocrisy. My fear is that if, however unlikely, they succeed, it would set a precedent in autism communities around the world, particularly here in the Philippines.

    My hope and prayers is that no one listens to Autism Speaks. We self-advocates are looking forward to their downfall.

    November 14, 2013 at 1:42 pm Reply
  5. i have loved the powerful reactions of self-advocates and parents-who-think-like-me all over the internets! I hope you will be heard by your government. the influence AS seems to have on how Autism is perceived in the US seems massive – they should not be the only ones to be heard! As they are so big, and their rhetoric so cunning, their symbols so catchy, we must all be alert – worldwide – and speak up!
    I do not want my autistic son to grow up in a world that calls for war on autism.

    November 17, 2013 at 8:00 pm Reply
  6. Emily #

    Thank you!

    I have Autism and people call me a burden all the time. I ask them where they got that idea and they said “Autism Speaks said so” or some BS like that.

    February 28, 2014 at 7:30 pm Reply
    • OMum22 #

      That’s awful, so sorry to hear.

      March 17, 2014 at 1:27 pm Reply

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