AutAc Reads IADK, Part 10: Part X

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

Last section, y’all.

Part X is called “Today,” and it starts on a note I find incongruous.  In previous sections, the authors portrayed people with Asperger Syndrome as sociopaths.  Here, however, we get a biography of Alex Plank, founder of Wrong Planet, that reads like a diagnostic checklist but is clearly intended to make us see Plank as human, even likeable (despite, of course, the autism).  Are we supposed to hate and fear “high-functioning” autistic people or not?

Plank is credited with singlehandedly launching the entire conversation among autistic people on the Internet with the launch of Wrong Planet, which is so inaccurate as to be laughable, and which can be disproven with a single Google search.  The authors also get autistic people’s reasons for congregating online horribly wrong.  They presume we do it because we don’t have to read in-person nonverbal cues, ignoring (or perhaps never-bothering-to-find-out) that autistic people can generally read one another’s body language as well as non-autistic people can read one another.  No; we do it because (a) many of us don’t live near one another, and (b) for many of us, writing is our native language; speaking is secondary.

But I digress.

Despite the focus on Alex Plank, I found this section of Part X refreshing for what I thought was a complete lack of focus on parents.  Then came the final paragraph:

It was the birth of a new philosophy called “neurodiversity,” which was welcomed by many in the autism community.  But at the same time, some autism parents in the community discovered a new adversary in the arena: people with autism themselves.

Neurodiversity, the authors hint, is the misguided brainchild of so-called “high-functioning” autistics who want the lion’s share of the sweet, sweet services pie for themselves.  And it is out to get our noble, beleaguered parents.  SO MEAN.

The SO MEANNESS is credited to the singlehanded work of Jim Sinclair, who apparently launched the neurodiversity movement in its entirety when he gave the 1993 talk on which his now-famous piece “Don’t Mourn for Us” is based.  In it, Donvan and Zucker claim, he attacked parents by explaining that wishing to get rid of the autism is tantamount to wishing to get rid of us – a clear (to the authors) throwback to Bettelheim and therefore unacceptable.

(Ironically, when one Googles “Don’t Mourn for Us,” the first link that appears is to the website of Autism Network International (ANI), which predates Wrong Planet by a number of years.  It’s almost as if Donvan and Zucker could not be arsed, amidst all their other work on this book, to use Google.)

Throughout this section, the authors regularly downplay the credentials of every actually-autistic person they cite.  Jim Sinclair’s background in counseling is not mentioned, but the authors take care to remind us that he “was not a father.”  Michelle Dawson, who has put in over a decade as a research assistant at the Autism Specialized Clinic of Hôpital Rivière-des-Prairies in Canada, is called “a former postal worker.”  Ari Ne’eman’s apparent credentials are limited to having been five years old when Jim Sinclair wrote “Don’t Mourn for Me” and fourteen when he decided to launch ASAN.

Donvan and Zucker, by the way, clearly dislike Ari Ne’eman, which makes me wonder what Ne’eman ever did to them. The Ari Ne’eman presented in In a Different Key can’t do anything right, whether he’s running a nonprofit out of his dorm room or (accurately) depicting cure research as a potential route to eugenic abortion akin to what has happened to a generation of children with Down syndrome.

There are also a number of snide asides like this one, in which Ne’eman has just been asked by a reporter from the Washington Post to comment on the “Ransom Notes” ad campaign:

Ne’eman asked the reporter to hold a moment, placed his phone on mute, punched the air as hard as he could, then returned to the call.  “These ads reflect some very old and damaging stereotypes,” Ne’eman said, sounding like an activist who had been doing this work for years.  (emphasis mine)

Um.  By Donvan and Zucker’s own account, Ne’eman founded ASAN when he was fourteen; this conversation with the Post took place in Ne’eman’s college dorm room.  In other words, he WAS an activist who had been doing this work for years.

Oh, and because Ari Ne’eman was apparently “impervious” to “an autism mom, whose total love for her child and despair over his future should have been evident,” (in other words, “because he does not agree with Donvan and Zucker’s take on autism”), he’s not only autistic but clearly one of those little Asperger’s sociopaths we were introduced to several chapters back.

I would find this charge more infuriating (seeing as I too disagree with the authors), except that it is followed by the amusing charge that Ne’eman is also “mindblind” – that his unwillingness to cave to Liz Bell’s way of thinking in the depicted exchange means he  lacks Theory of Mind.  Of course, our authors’ complete unwillingness to consider what Ne’eman’s reasons might be for that disagreement is not evidence of “mindblindness” at all.

Most of all, the authors are aghast that anyone, pro-neurodiversity or otherwise, could resist the notion of a “cure” for autism.  In so doing, the authors make a common error: they conflate the concept of a “cure” for already-existing autistic people with that of “prevention,” which would keep autistic people from being born in the first place.

Pro-neurodiversity advocates are categorically opposed to any preventive measure that reduces the amount of neurological diversity in the population; it’s right there in the name.  They might not, however, oppose a cure if each autistic person could decide individually whether or not to take it.  Unfortunately, that is not the world we live in, as Donvan and Zucker’s starry-eyed pro-parent approach makes abundantly clear.

The end of Part X tells the story of Donald Triplett’s adult life: his learning to drive, his decision to attend college, his enjoyment of golf.  This ending section comes after an extended meditation by the authors on the elimination of Asperger’s syndrome as a separate diagnosis, a decision they seem to hold in some disdain.

The return to Donald Triplett’s story, then, is profoundly ironic: the authors have spent most of Part X attempting to convince us that anyone who can converse, who can drive a car, who can attend college, is too “high-functioning” to speak about “real” autistic people or to provide any meaningful information to the parents of “real” autistic people.  Donvan and Zucker even stop just short of accusing Ari Ne’eman, personally and professionally, of profiting from co-opting an autistic identity – an identity they have already portrayed him as “unmistakably” having in his own right.  Yet they speak about Donald Triplett with great fondness.  It is as if who “really” has autism is dependent not on the extensive research indicated by the book’s endnotes, but by who Donvan and Zucker personally like.

In A Different Key is a baffling book.  Parts of it will resonate enormously with parents, many of whom continue to feel beleaguered and overwhelmed despite the noises that charities like Autism Speaks make about claiming to have their backs.  Parts of it will resonate with anyone who wants to see Hans Asperger or Ari Ne’eman dragged through the mud.  But parts of it will make no sense to anyone, regardless of audience – because parts of it make no sense in the context of the attempted narrative, no matter how that attempt is organized or described.

This book is, frankly, a mess.  I suspect that early drafts of it – drafts that, I imagine, focused on the pro-parent narrative instead of attempting to address every idea about autism that had entered the mainstream in the previous year – were quite good.  The resulting product, however, reads like a late-night undergraduate panic attack.  There are better books about autism out there; there are even better books about autism parents out there.

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4 thoughts on “AutAc Reads IADK, Part 10: Part X

  1. ‘It is as if who “really” has autism is dependent not on the extensive research indicated by the book’s endnotes, but by who Donvan and Zucker personally like.’

    Or on who does or doesn’t express any strong opinions about autism contrary to theirs. Hence relatively “high-functioning” people can be really autistic, so long as we have (or at least voice) no meaningful position on that being actually okay.

    “They might not, however, oppose a cure if each autistic person could decide individually whether or not to take it.”

    Every time an internet parent says that I “don’t get to speak for all autistic people, it’s fine if you don’t want a cure, but what about those who might?” I say “Yes, you’re right; I therefore presume that, should the possibility of a cure ever become a plausible thing, you would be in favor of strong regulations or legislation forbidding parents from making that choice on behalf of their autistic child until that child reaches the age of majority for medical care–say 14 or 16?”

    I have never gotten an answer.

    Liked by 1 person

    1. I suspect the authors like people who don’t challenge them. :p

      They probably also like people who don’t point out their own contradictions, such as their portrayal of Ari Ne’eman as both Very Autistic and Not Autistic Enough to Deserve Consideration or Be Taken Seriously.

      Liked by 1 person

    2. I bet the reason you have never gotten an answer to the question of being in favor of strong regulations on an autism cure is that the parents would be afraid to publicly say “no”, because if they did, they would reveal the argument about autism cures being a choice to be the sham that it is.

      I bet the real view they have for a cure would be something like this argument that the Judge Rotenberg Center uses for electric shocks (though they have taken down the original of the page it’s on from their website, go figure):

      “JRC’s belief is that if a treatment procedure is effective, JRC should make it available to the parents of all of our students who wish it for their child and not limit its availability to those who function at a low cognitive level. To do so would be to discriminate against the higher functioning students.”

      (source) http://web.archive.org/web/20080423220655/http://www.judgerc.org/faqs.html#okforlowerfunctioning

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