3.02.2016

When The Wrong People Write About Autism: A (Preview) Review of In A Different Key

I've been trying to write a review of the new autism book In A Different Key and its media treatment for nearly two months. So here is an unbridled, frustrated, disappointed preview of my forthcoming, more measured, but no less critical long-form critique. (I live-tweeted while reading the book if you want to see my specific grievances.)

My primary issue is that In A Different Key (IADK) is so misleading, so harmful -- and presents so many outdated ableist messages about autism and autistic people as facts -- that it's hard to pick a starting point. I feel like Kevin Kline's Otto from A Fish Called Wanda, who, in practicing apologizing to John Cleese's Archie, starts out gritted-teeth polite, then erupts in expletives.

Another matter is that, as high profile mainstream media figures who use personal connections to autistic family members to validate their positions as autism authorities, authors John Donvan and Caren Zucker have for the most part openly ignored criticisms about their book. Which would make one think perhaps they're not aware, or not listening. However, my personal experience, as both senior editor of Thinking Person's Guide to Autism and as a commenter on their public editorials, is that they are keeping a close watch on all public responses to their book, and reaching out through back channels to react to, counter, or even censor criticism. Which is ... kind of the opposite of what I'd expect from mainstream media representatives. (Or maybe not, given the workplace intolerability that led to Melissa Harris-Perry leaving MSNBC.) So it's not as though they haven't been told, or heard, that  IADK is mostly getting autism wrong.

My third concern is that, as someone whose family appears in In A Different Key's more compassionate, respectful, and accurate predecessor NeuroTribes, it would be easy to dismiss my criticisms of Donvan & Zucker's book as personal or party-line bias. Except anyone who follows my work knows I'd criticize this hurtful book regardless: as (again) senior editor of Thinking Person's Guide to Autism, as the parent of an autistic teenager who deserves better than the faux-compassion and lack of understanding shown by Donvan and Zucker, and as someone who listens to autistic people themselves about autism. It's distressing to watch Donvan and Zucker actively ignore the ways in which autistic self-advocates are taking the lead and changing the world for the better -- not just for the "high functioning"autistics and neurodiversity movement leaders Zucker and Donvan ignorantly or willfully characterize as being so unlike my high-support son, but for autistic people of all ages and abilities.

I do feel like I need to draw out at least one major fail on the authors' part now, though: their stance on ABA therapy, and contrast it with the same topic's more nuanced, better-researched, and empathetic coverage in NeuroTribes.

Donvan and Zucker recently appeared on The New Yorker's Radio Hour (at 44:10, no transcript), talking about their book. In addition to claiming IADK is all about the compassion and acceptance and need for autistic-friendly spaces NeuroTribes actually demonstrates (which felt very much like politicians stealing  buzzwords from more successful rivals), and Zucker asserting "you can't call the person who's banging their head against the wall, or who can't care for himself, the same guy who has a PhD" (which would be news to supported living autistic PhD holders who self-injure, and reduces head-banging to a self-contained inscrutable problem rather than evidence that something is awry with the autistic person), John Donvan had this to say about ABA therapy:
"We do know that behavioral treaments, which are very intense and very expensive, can ameliorate some of the more limiting behaviors."
It's not like legitimate critiques of ABA are hard to find. Autistic researcher Michelle Dawson (dismissed by Ducker and Zonvan in IADK as a "former postal worker") wrote The Misbehavior of Behaviorists in 2004. Contemporary accounts of ABA traumatizing autistic children -- especially those whose motor planning disabilities do not allow them to demonstrate competence in ABA settings -- as well as those of disillusioned ABA therapists, are widely available. Yet Donvan and Zucker endorse ABA. Why? I suspect it's IADK's almost exclusive focus on how autism affects parents and caregivers rather than autistic people -- but maybe they'll respond here, and tell us.

Here, in contrast, is an excerpt from NeuroTribes about the function of "limiting behaviors," and the nastiness of ABA's design to eliminate them:
"Researchers would eventually discover that autistic people stim to reduce anxiety—and also simply because it feels good. In fact, harmless forms of self-stimulation (like flapping and fidgeting) may facilitate learning by freeing up executive-functioning resources that would otherwise be devoted to suppressing them. For Lovaas, however, self-injury, self-stimulation, and echolalia were all of a piece and equally ripe for extinction. Alone in his lab with his team of devoted grad students and experimental subjects in no position to complain, he began seeking means of punishment that could get past a review board."
Short version: Don't read In A Different Key. It's not a good book about autism. Read NeuroTribes instead, if you care about the past, present, future -- and feelings -- of autistic people themselves.

1 comment:

  1. Those writers have no subtlety. How can they not understand that a person can have a Phd and still bang their head and need support? That high and low functioning are completely meaningless. This is all stuff they'd know if they'd listen to autistic people instead of dismissing them and leaving them out of their own lives! Grrr

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