So for the first time, I want to add a disclaimer about myself before reviewing this book. I am not autistic. I am not on the spectrum in any way. I do not experience the things that autistic people* experience. I am speaking about autism as a neurotypical person.
Does it matter? I think so. I think any time we’re writing about a marginalized community we’re not part of, we should understand that distance, and understand that the perspectives and experiences of the people who ARE a part of that community should come through in everything we say.
The reason I mention that before anything else is that in many ways, I feel In a Different Key fails to do that. John Donvan and Caren Zucker are not on the spectrum, and while this book does a lot of amazing and impressive things that I want to make sure it gets due credit for, it does not give much credit to the perspectives and experiences of autistic people. Certainly not in a way that gives them the opportunity to advocate for themselves.
Here’s what In a Different Key excels at:
It covers the history of autism to a more expansive, extensive, and detailed degree than one could possibly expect. True, the history of autism as something that is diagnosed is very short, but this book covers everything from the chronology of scientific information, the evolution of advocacy (from the “refrigerator mother” to parent advocacy groups and even touches a little bit on autism advocacy from autistic people), the gradual growth of autism acceptance in society, debates surrounding the nature of autism and questions that surround it…this book is nothing if not ncredibly thorough.
And yet for all the information contained, all the science, history, and controversy, it never once reads like a textbook. It manages to make the story of autism feel more like a narrative than an actual textbook history, by following individual key players in the history of autism and how they fit into the broader history. From the first child diagnosed with autism, to various psychologists who tried to study it, to some of the individual families who had a child with autism and their rises to action, Zucker and Donvan manage to tell the story of autism in a way that is compelling and even deeply personal at times.
Honestly, for what it is, it’s a very good book. Well-written, crammed with information but still easily digestible, and genuinely engaging, it manages to make an objective history feel subjective enough to have you rooting for the key advocates.
That said, clearly this is not a book about advocacy, or a book aimed at advocacy. So in the sense of what the book tries to be–a detailed, expansive, all-consuming and yet still personal history of autism and an objective view of the debates that have surrounded it since its first diagnosis–it does a wonderful job. Yet I still think the missing advocacy component is important. Not because all books about autism, or about any marginalized people, are required to be activist books, but because I feel they do have a responsibility to exist within the context of activism, to speak with respect to the way they will be received and the way they NEED to be received to ensure the people they are written about are heard.
Some things it does very right. For example, in covering the vaccination debate, it leaves no room for doubt that vaccines do not cause autism, that there was never a shred of viability to the argument. While with most aspects of autism the book treats each subject the way the public would have seen it at the time, it never lends credibility to that particular conspiracy theory.
But neither does it say the other thing that needs to be said about the debate: That even if vaccines did cause autism, there’s something deeply troubling about parents who would rather risk the death of their child than risk autism. The book gets just enough into current self-advocacy to acknowledge that it’s the new turning point of autism advocacy; enough into the debate about finding a “cure” to acknowledge the debate’s existence; but still treats autism advocates in some ways as being callous and disconnected from “the rest of us,” still lends equal credibility to both sides of the debate on a cure. And while equal weight is a good thing in most educational endeavors, after covering in detail the history of autistic people being silenced at best and abused at worst, I think this book owed it to both the autism community and its neurotypical readers to ensure the identity of autistic people is represented and respected.
That’s where it fell apart for me. I spent the whole book fascinated, engaged, sometimes disgusted by the treatment of autistic people and sometimes encouraged by the way society seemed to be taking steps toward changing for the better. But I also spent the whole book excited for the good part–the part where autistic people got to advocate for themselves, the part where we got a chance to understand why autism is not a burden or a struggle but a part of identity, as my friends on the spectrum have always explained it to be for them. When that part came, it never lived up to what it needed to be.
*”People First” language suggests saying “people with autism” because it puts the person before the disablity, but friends of mine (and even some strangers I happen to have heard from) have said that they prefer “austistic person” because their autism is a big part of who they are, so I have chosen to respect that here.
**I received this book from the Blogging for Books program in exchange for this review.