In a Different Key: The Story of Autism, by John Donvan and Caren Zucker, is a dramatized storyline of the evolution of how we understand autism. At 551 pages plus the bibliography, timeline, and notes in the back, it is a lengthy read.
The writing style has more in common with Life Animated or Neurotribes than any other works I’ve read. This is likely due to the authors’ backgrounds in journalism and other media. You won’t find the classical autistic “frank, direct, and explanatory” tone in these pages. Nor will you find the loving and earnest tones of a parent fighting for their child. Instead, it’s a more restrained style. Dramatic, but you have to look carefully for the authors’ opinions of the people and ideas. The idea is to seem as non-biased as possible in service of the truth.
Despite that stylistic difference, In a Different Key is still readable to a layperson. But I will say it took me the better part of a week to get through it. I like to think I’m no slouch in reading speed and comprehension, but this was a dense read, even for me. It covers over a hundred years of history and several major social movements. Some names I recognized from my previous research. Others I didn’t.
Part of the difficulty in understanding the book for me was the sheer number of names. There are a lot of players in this history of autism. Keeping them all straight was difficult for me, and from my reading of Neurotribes, I know the authors didn’t even include all the major characters. I could have used a “Who’s Who” section in the back of the book, alongside the timeline, bibliography, notes, etc. That said, no less than a quarter of In a Different Key’s pages are “back of the book” resources. Adding a few more pages to an already lengthy read was perhaps not a high priority for the publishers.
An Education with a Couple of Gripes
This book was an education. It was an incomplete education, I should note, but it’s still highly valuable. And infinitely more digestible than poring over the letters, documents, interviews, and other sources. Among the movements it describes are the infamous “refrigerator mother” theory, the eugenics movement, institutions, behaviorism (ABA), neurodiversity, and the amorphous definition of autism.
An irk of mine kept cropping up while I read In a Different Key. The writers seem to tie up each movement, such as the institutions issue, with a neat little bow at the end. It’s feels like, “and then this issue was settled and no one was institutionalized after that.” I am very sorry to say that institutions absolutely still exist. They aren’t as centralized as they used to be, and now come in the form of group homes, state schools, and intentional communities.
Not every entity with those names will be an institution, but if the autistic person doesn’t get to make their own choices, go out when and where they want (with supports as needed), get the help they need to meet their goals, meet new people and spend time with friends and family, it’s an institution. Please feel free to read this literature about the subject.
The same goes for the behaviorism issue. Applied Behavioral Analysis was completely flawed and abusive in its inception. And it may have grown and changed over time. But I can safely say people continue to send their small children to centers, or sign up for in-home ABA therapy. In fact, prior to understanding how damaging ABA can be, I worked in one. That was less than 10 years ago. The era is hardly over. Despite the adult autistic people advocating against it with a truly vigorous fervor..
Biases
The first and clearest bias to me in reading In a Different Key was their kind treatment of Dr. Leo Kanner. Having not read the literature myself, I couldn’t say whether their “he liked the limelight but really, his focus was helping the children” interpretation is truly accurate. I can say that a lot of my other reading was much, much less forgiving, and tended to believe that Kanner was egotistical.
The next was the treatment of Andrew Wakefield. The vaccine controversy is flatly exhausting, and I won’t explain it in detail here, but it’s not as simple as they make it out to be. Vaccines can, and do cause harm. Anything, including the very substance that makes up more than 70% of our own bodies, can harm people. There is an entire legal framework constructed especially to investigate and handle such vaccine harm cases. If vaccines were truly 100% safe, no such things would be needed.
However, vaccines are also incredibly important. The ability to protect our most vulnerable from killer viruses and infections with herd immunity is one of modern society’s greatest triumphs. I will never argue that vaccines should be discarded. They are, however, something to be careful with. In vulnerable people like myself, the preservatives and added chemicals can overload an already struggling body and cause significant harm. The chances are very low, but they exist, and I don’t feel that In a Different Key did justice to that reality.
Neurodiversity
Finally, the authors of In a Different Key have essentially represented the entire neurodiversity movement with one person: Ari Ne’eman. This is hilarious reductionistic, as there are dozens or even hundreds of advocates that are part of the movement. Where was the section about Maxfield Sparrow? Where is John Elder Robison? Or Ann Memmott, Dr. Stephen Shore, or really any of the other contributors on this list? It was as if it was too bothersome to recognize the diversity of the spectrum.
Again, I have not read the correspondences that the authors used to craft their narrative. But I do feel Ne’eman was more or less presented as a myopic leader, unconcerned with the plight of autistic people with greater medical needs and less mainstream communication than his own. This is a typical criticism of the neurodiversity movement, to be honest. It’s often put forth by parents insisting that autistic people that pass for neurotypical can’t possible know what their life is like for nonspeaking, medically burdened children. That we’re somehow so different that there’s no reason to listen to us.
The fact is, neither side is entirely correct. The ability to pretend to be neurotypical does not mean the person is somehow not disabled. It doesn’t mean we don’t have similar medical difficulties. And it certainly doesn’t make us less autistic somehow.
But the neurodiversity movement also goes too far. Some proponents of it argue that all disability stems from social sources. That if people would simply accept us, there would be no disability. This is an absurdity, of course. Medical issues, while not actually autism, are prevalent in autistic people. You can’t love a person’s food allergies away. An imbalance in gut bacteria can’t be hugged or talked away. Treating it is the only way the person can thrive. Advocating otherwise is thoughtless at best.
Focus and Overall Agreement
The authors contend (and I agree) that the overall focus of parents, neurodiversity advocates, and many (though not all) of the medical and philosophical experts is the same. All parties want good lives for autistic people. The trouble is that the definition of autism is very unclear, and so is what constitutes a good life.
If the definition of autism contains chronic gut dysbiosis, mental illness, seizures, aggression, and the assumed lifelong lack of interest in others, of course it’s reasonable for autism parents to want a cure. They are literally watching their children suffer every day. Who would live like that and not want something better for their children? Certainly not I.
Obviously I have a bias of my own. I do feel that if you want to know what it’s like to live with autism, and what a good life for autistic people is, you should ask the actual autistic people. Discard your perfect narrative of “school -> college -> good job, dating -> marriage -> kids -> grandkids.”
Maybe those things are what your loved one wants. Or maybe school is painful for them and they’d be happier working with their hands in a technical school, or a blue-collar job. Perhaps they love kids, but don’t want their own. Maybe they’re happy living a solo life, with friends but no partner. Or perhaps they’ll end up in a polycule relationship, surrounded by people who love them for who they are.
Autistic people are startlingly different at times. Don’t shoehorn us into an imagined perfect life. Find out what we love. That’s what should be in our lives.
Read This Book If
You want to read a history of autism and don’t mind devoting a significant amount of time to the effort. It’s not a perfectly complete history, as it mostly stops at 2010. At times In a Different Key is biased and limiting. It boils the neurodiversity movement down to a single advocate. However, for the amount of territory they had to cover, the authors did a pretty good job of writing this book in a digestible, if lengthy format. I had a lot of gripes in reading this book, but I can’t deny it’s a quality publication. Do read it, but keep your metaphorical salt shaker on hand so you’ll have plenty of metaphorical salt grains ready to take with the material.
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