AutAc Reads IADK, Part 7: Part VII, Part Two

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

If I were asked to sum up In a Different Key in two bullet points, it would be these:

  • mostly for autism parents
  • …with random moments that stray from that focus for no obvious reason.

The first part of Part VII, which focuses on facilitated communication and which I covered in Part Six of this series, falls into the second category.  The second part of Part VII, which discusses parental attempts to fund neurological research on autism, falls into the first category.

The book never attempts to explain what these two sections are doing in the same “Part” of the book, and there is no connection – overt or otherwise – made between them.  The only connection I can find between the FC section of Part VII and the section on the founding of NAAR and CAN is that the son of CAN’s founders, Dov, did have sessions on Rapid Prompting Method (RPM), which is often dismissed as a type of facilitated communication by those who aren’t clear on the differences between the two methods – and that Dov’s parents were overjoyed at the gains in communication Dov made while participating in RPM.  (Dov’s mother, Portia Iversen, has written about this at length.)  Donvan and Zucker, however, never bring this up, and it’s impossible to tell from the book whether they even know it.

The book does try to shoehorn both topics into the same part by quoting Douglas Biklen, a longtime researcher on and proponent of FC, as saying that FC “forced [him] to redefine autism” – and that the  parents who founded NAAR and CAN were trying to do the same thing.  But this connection also reads as forced.  The founders of NAAR and CAN appear to have been motivated less by “redefining autism” as by researching it; certainly the authors never quote them as having “redefining” as their goal.  This attempted connection reads as implausible, at best.

In short, the FC section is dropped seemingly at random in the first half of Part VII, and it has nothing at all to do with this half of Part VII.  So here we are.

The second half of Part VII is another “parents are the real heroes of autism” narrative that characterizes so much of In A Different Key (and which would have made this book a much more powerful, and probably more popular, text if only the authors had managed to stick with it).  We are introduced to Eric and Karen London, who founded the National Alliance for Autism Research (NAAR), and to Jon Shestack and Portia Iversen, who founded Cure Autism Now (CAN).  Both organizations are with us today as the original joint sponsors of IMFAR; CAN merged with Autism Speaks several years ago.

The rest of Part VII is devoted to detailing uncritically the early days of both NAAR and CAN, including their early unwillingness to work together despite clearly doing duplicative work (a stance the authors seem to find more heroic than redundant) and their use of celebrity endorsements to start pushing autism into the national spotlight.  For anyone currently researching autism rhetoric or narrative, this chapter is next to useless as a critical overview of NAAR’s or CAN’s contributions – but at least it provides some useful Google search terms.

Donvan and Zucker are not shy about putting the parents in the spotlight here.  “For getting all this started,” they write, “the credit would always belong to the founders of CAN and NAAR.”  “This” includes “new scientific attention paid to autism,” “getting money to move in that direction,” and “getting young researchers to make understanding autism the focus of their careers.”  It does not include thinking critically about any of these things, of course; that would ruin a good hero story.

Perhaps worst of all, Donvan and Zucker end Part VII by giving us the impression that they are not buying into the burden/tragedy/fear rhetoric that drives so much of current autism discourse.

“For the first time,” they write at the close of Part VII, “a much larger public was learning what autism was about, but in ways that moved their response, in remarkably short order, from curiosity to fear.”  That well-placed but implies that the authors side with curiosity – yet the entire book, insofar as it discusses autism rather than “autism parents,” does so in at arm’s length.  The authors are “curious” in the way you might be to find a nine-foot-long rattlesnake in your basement.  On the one hand, you’ve never seen one that big in the wild before.  On the other hand, you thought you were safe in here.

Make no mistake: the authors are afraid of autism.  Or, at least, they are afraid of humanizing autism – which amounts to the same thing.  The book consistently humanizes only the parents and (some) professionals who work with autistic children.  At an even 400 pages in, we have yet to see the authors treat even one autistic person like a person, no matter how detailed their treatment of the autistic person’s story.

No, Donvan and Zucker buy it too.  They’re afraid.  They don’t want you (autism parent) to think that they are, and they don’t want you to admit you are too.  But they are.  And they think you should be.