AutAc Reads IADK, Part 9: Part IX

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five, Part Six, Part Seven, Part Eight

Part IX is titled “Epidemic.”  The authors ended Part VIII by being laughingly skeptical about the concept of an “epidemic.”

Part IX starts with a chapter on Andrew Wakefield and the manufactured “the MMR vaccine causes autism” controversy.  For several pages, I had great hope for our intrepid authors: they clearly did not buy the idea that the MMR, or thimerosal, or any vaccine ever, actually causes autism – although they never did go so far as to explain what happened to Wakefield when his study was revealed as a fraud and he himself was revealed to have had significant financial incentive to discourage use of the MMR.  The first several pages take the Trix Approach.  Silly parents, vaccines don’t cause autism!

But then, of course, we return inevitably to the book’s refrain: that parents are the real heroes of the autism story, even when those parents are profoundly wrong.  In this case, we get the story of Lyn Redwood’s crusade against vaccines, leading up to her nomination to the Interagency Autism Coordinating Committee (IACC).

And because the point of Donvan and Zucker’s parent narrative is that parents are right no matter how wrong they are, the message that vaccines don’t cause autism and that the entire scare about them was a manufactured controversy is lost.

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Part IX then pivots to a discussion of Autism Speaks.  The authors call our attention, with mild surprise, to the fact that this time it wasn’t parents charging in to fix everydamnthing wrong with the autism world; it was grandparents.  Quelle surprise!

After a quick overview of just how Autism Speaks became the 500-pound gorilla in the room, the authors discuss the merger of Autism Speaks and CAN – and I learned something new, which is that both of CAN’s founders were dead set against that merger.  Nonetheless, it happened.  And so does a page-long summary of Autism Speaks’s acquisition of the controlling share on autism research.  And then, this:

And yet, within a few short years, Autism Speaks’s performance in the area of scientific research would come under question from all sides, and the group would yield leadership position in this realm to others, while Bob Wright’s dream of a “big tent” organization – synchronized, harmonized, and centralized – would be seen sagging dangerously low, pulled down by the weight of too many irreconcilable viewpoints.

And all because Autism Speaks became entangled in the vaccine controversy, where the science on one side didn’t add up, and never had.

From the point of view of an autistic activist, these lines are overstating their case.  Autism Speaks has never stopped being the 500-pound gorilla in the room.  Not when Wakefield was stripped of his medical license, not when Alison Tepper Singer left or founded the ASF, not when SFARI appeared, not when the vaccine courts held it “extremely unlikely” that there was a link between autism and vaccines.  Autism Speaks has always held the microphone; it has always shouted down autistic people.

Incidentally, although Part IX does return eventually to the end of Wakefield’s career, the vaccine courts, and similar events, it never does underscore its implicit message that vaccines don’t cause autism.  Instead, it devotes its usual energy to sympathizing with and lauding the actions of parents, and because the parents in this chapter are generally anti-vaccine, our usual dose of pathos naturally prevents the authors from condemning the whole debacle.  Gold stars.

 

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One thought on “AutAc Reads IADK, Part 9: Part IX

  1. “…and I learned something new, which is that both of CAN’s founders were dead set against that merger.”

    I actually knew this; I read a fascinating blog post a couple of years ago (in the run-up to Autism Speaks’ 10th anniversary, probably) by, I don’t know if she was a founder, but a parent prominently involved in CAN, who recounted being simply appalled at what she saw as the Wrights’ narcissism and disregard for actual autistic people when the organizations were first collaborating.

    She also thought that had CAN survived as an independent organization, it may’ve had a shot at maturing into an organization with a very different outlook as its members’ children grew up to express their own perspectives.

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