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Recent Autism News

December 19, 2009
"A child with autism (three years old) po...
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According to a new CDC study that looked at medical and educational records, in 2006, .91% of eight-year-olds in the US (or 1.45% of boys and .32% of girls) were on the autistic spectrum (which includes Asperger Syndrome and PDD-NOS), though if you’re going for the scare story the way most of the media seems to be, it looks better to round up and say nearly one percent. While these numbers do represent an increase from 2002, it is unclear to what extent that is due to improvements in diagnosis and tracking (or even overdiagnosis). This hasn’t stopped Autism Speaks from bringing out its big “health crisis” drum, and I don’t mean the kind of drum you beat. I mean the kind of drum in which you collect donations. These donations in turn allow you to make deeply stigmatizing videos about the population you supposedly serve which allows you to frighten more people into donating, and so on and so on. While the primary harm of promoting such a negative model of autism is on autistic people, it also hurts their families and other caretakers by encouraging them to see the negative instead of helping to educate them about how to see or bring out the positive. Do you lament that a child may never speak? Or do you try to understand their way of communicating?

Autism Speaks being an organization founded by a former chairman NBC, it is no surprise that it has become the go-to group when reporters need a comment. Who better to know how to get the media’s trust and attention? 121 articles on the subject, according to Google News, cite Autism Speaks directly. Others, including the NY Times story, simply cite unnamed “advocacy groups” which echo the Autism Speaks line. As yet, I have been unable to find any which cite the Autistic Self Advocacy Network (ASAN). You would think that the voices of adults on the spectrum would be important to hear in this conversation especially when, as in The Boston Globe story, it turns to the question of what happens when these children grow up.

On the other hand, Ari Ne’eman, the Founding President of ASAN, was just nominated to the National Council on Disability. This is a sign that progress is being made in the US, however slowly, in the efforts to ensure that the voices (or other ways of communicating) of autistics are heard (or seen or felt) wherever our lives and differences are discussed.

Nothing about us without us.

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5 Comments
  1. December 19, 2009 11:56 am

    Thank you so much for this great post! It is very frustrating to see initiatives like Autism Speaks stigmatizing and marginalizing us. The language they use to refer to us (an epidemic, public health crisis) is offensive and ignorant. I for one, do not need them to speak for me and colonize my voice.

    • Colleen Hodgetts permalink*
      December 19, 2009 6:31 pm

      I love this quote: “Do you lament that a child may never speak? Or do you try to understand their way of communicating?” Very eloquently stated.

  2. February 7, 2010 7:45 pm

    Interesting post.
    Your right I’m a mother to an 9yr old son with ASD. I blog and mod a facebook group and fan page. On all I try to write and talk about the positives on autism and Aspergers. As like u said it better to discuss what happens now not what if’s.

    • February 8, 2010 7:21 am

      Thanks for your comment and for the work you do. What’s are the URLs of the Facebook fan page and group?

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