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Book Review: In a Different Key: the Story of Autism

Book Review

John Donvan and Caren Zucker, "In a Different Key: The Story of Autism" (Crown Publishers, to be published January 2016).

by Robert B. Waltz, AuSM member

John Donvan and Caren Zucker, "In a Different Key: The Story of Autism" (Crown Publishers, to be published January 2016).

by Robert B. Waltz, AuSM member

"May I have your identity papers?"

That's the question I felt like I was being asked when I read this book. It felt as if the authors were questioning my autism diagnosis. Having once had employment problems because of something similar to that question, it touched home.

This book has gotten rave reviews, and if all you care about is writing and research, they are well earned. But while it is, formally at least, a good book, I do not think it is the book we need right now. It is not a book about autism. Not really. It spends very little time talking about actual people with autism, past or present, and when it does mention them, it's almost as if they're laboratory animals to be subjected to some secret experiment. They aren't PEOPLE; they're just mysteries to be solved.

What the book is about, rather than the lives of those with autism, is the actual DIAGNOSIS of autism -- how the word came to be, how it was applied, how the diagnosis became well-known, and some of the science associated with it. This is done through a series of vignettes, almost like museum displays: See Leo Kanner create the term autism. See Bruno Bettelheim blame it on refrigerator mothers. See Lorna Wing say, "But there is more to it than that."

The problem is, Lorna Wing DID say "There is more to it than that," and you'd never know it from the book. That's what bothers me. The book is about 550 pages long, and for 489 of those pages, almost everything is about those whose autism causes the most difficulties. It's as if you can't be autistic until you get the label, and even then, you aren't really autistic unless you have Original Kanner Autism. Then, when we finally hear about Asperger's Syndrome on page 490, we see little about the effects of broadening the spectrum, or about all the people who silently suffered without a diagnosis. Instead, we get plunged straight into the Neurodiversity Wars, which are portrayed as if it's parents and Autism Speaks, who want to cure autism, versus the more articulate people with autism, who want government support but want to be permitted to act as obnoxiously as they want. There is no hint of the middle ground of those of us who want to be accepted, and certainly not cured, but realize that we have to live in the world as it is.

Let's give the book its due. It's very easy to read; if anything, it has too little technical jargon. It seems to be meticulously researched -- although it misses a few points. For instance, it talks about Temple Grandin's first book "Emergence: Labelled Autistic" -- and treats it as a triumph for autism instead of what it actually was: a claim (which Grandin obviously ceased to believe later on) that Grandin had been cured of autism. It talks about early research that associates autism with mental retardation -- without mentioning the later research that links it with higher-than-average intelligence.

Despite those quibbles, the book deserves credit for introducing us to many, many important people from the history of autism -- many of whom I had never encountered before. There is a lot of useful information here. Unfortunately, it never really forms a coherent picture. You'll hear about Leo Kanner creating the autism diagnosis -- and have no idea what he did with the rest of his life. Or Bernard Rimland, who was among the most active in combatting the "refrigerator mother" stereotype -- and who, in this book, starts his research and then vanishes. The history of autism should connect -- but this book is like a jigsaw puzzle that hasn't been assembled: Lots of pieces, no whole. If it had been written as "A Dictionary of Big Names in Autism," they would have needed a new format for the chapters but hardly any changes in the text. It would have made a great reference. As a history, it's not so good -- it doesn't give any new insights into the history of autism or the experiences of those who have it.

Worse still, until they gets to the publication of the DSM-IV in 1994, Donvan and Zucker never have anything to say about those who had less obvious cases of autism -- the ones diagnosed as "high-functioning" or as having Asperger's Syndrome. What, we didn't have problems until the diagnosis existed? That's like saying no one died of murder until they developed forensic testing!

The history of autism seems to be a very hot topic all of a sudden, with this volume showing up just a few months after Steve Silberman's "Neurotribes." This book has, without question, more depth about the history of autism. But it has no insight. There is no understanding of autism, there is no attempt to look at how people with autism feel (yes, it sometimes mentions how their parents feel or felt, but that's not the same thing!), there is no real sense that people with autism are PEOPLE. Perhaps that is justifiable in the most extreme cases -- although I doubt it very much. But it certainly isn't justifiable in cases like mine -- and yours, if you have autism and are reading this! It was not a nice feeling. The book is a good read, it is easy to understand, it told me a lot I don't know -- and I still can't recommend it for everyone. If you're the parent or relative of someone with "classic" autism, this might be useful. If you're interested in the history of the autism diagnosis, this will give you a lot of leads. But if you are a person on the spectrum who is reading this review, read "Neurotribes" instead, and be a part of a community rather than a lab specimen.