Friday, April 28, 2017

Book Review: In a Different Key: The Story of Autism by John Donvan and Caren Zucker

ISBN: 0307985709
Published: January 19th, 2016
Publisher: Broadway Books
Received: Blogging for Books
Read from February 24th to March 2nd, 2017
Synopsis from Goodreads:
Finalist for the 2017 Pulitzer Prize in General Nonfiction
An extraordinary narrative history of autism: the riveting story of parents fighting for their children 's civil rights; of doctors struggling to define autism; of ingenuity, self-advocacy, and profound social change
Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi, became the first child diagnosed with autism. Beginning with his family's odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism--by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different.
It is the story of women like Ruth Sullivan, who rebelled against a medical establishment that blamed cold and rejecting "refrigerator mothers" for causing autism; and of fathers who pushed scientists to dig harder for treatments. Many others played starring roles too: doctors like Leo Kanner, who pioneered our understanding of autism; lawyers like Tom Gilhool, who took the families' battle for education to the courtroom; scientists who sparred over how to treat autism; and those with autism, like Temple Grandin, Alex Plank, and Ari Ne'eman, who explained their inner worlds and championed the philosophy of neurodiversity.
This is also a story of fierce controversies--from the question of whether there is truly an autism "epidemic," and whether vaccines played a part in it; to scandals involving "facilitated communication," one of many treatments that have proved to be blind alleys; to stark disagreements about whether scientists should pursue a cure for autism. There are dark turns too: we learn about experimenters feeding LSD to children with autism, or shocking them with electricity to change their behavior; and the authors reveal compelling evidence that Hans Asperger, discoverer of the syndrome named after him, participated in the Nazi program that consigned disabled children to death.
By turns intimate and panoramic, In a Different Key takes us on a journey from an era when families were shamed and children were condemned to institutions to one in which a cadre of people with autism push not simply for inclusion, but for a new understanding of autism: as difference rather than disability.


This book had it's good points, but those were overshadowed by its problems.

The book shares many stories of families who have a child diagnosed with autism. Notice that I said families and not stories about autistic children. In many of the stories within the book, I noticed that there was a heavy focus on the emotions that the parents of the autistic child were feeling and very little said about the autistic child's own feelings. This is probably something many people wouldn't notice, but I was watching carefully to see how these stories would be presented precisely because of something that annoys me frequently (and that I've heard autistic people themselves cite as a problem): There seems to be far more focus on how the families of autistic children feel than there is on how the autistic children themselves feel.

None of that is to say that the families' emotions aren't important as well. It's the noticeable lack of a focus on the autistic children that worries me. Because of the nature of autism, I understand that the children's emotions are seen as difficult to understand, but if anything, that makes trying to do so more important. The impression that constantly discussing family members' emotions and not the autistic person's creates is a sense that the autistic person is either not feeling anything at all (a dangerous stereotype) or that their feelings are unimportant.

Because of this same focus, there is little said about why autistic kids behave the way they do despite this being an entire book devoted to autism. You can read this entire book and see how autistic children act but still not understand why they behave that way. There's little to no effort made to explore what is happening in an autistic person's mind, how they are interpreting the world, and, therefore, why they are acting in certain ways. Instead, you only get the shallow surface level of, "Here are stereotypical behaviors of autism. Who knows the actual source of these behaviors?"

(Also, yes, I'm using identity-first language in this review because that's the language preferred by many autistic people themselves. The argument for identity-first language also makes more sense to me. The book uses person-first language in case you were wondering. For more on what I'm talking about, I'll point you to the Autistic Self Advocacy Network.)

There is a part of the book that describes the story of a father killing his autistic son. It unnerved me how the book discussed this. The father is described as a sympathetic character who was trying to help his child, and the book actually takes on an "any parent with an autistic child would understand his decision from an emotional standpoint" tone that's disturbing.

Towards the end of the book, there is some discussion of the neurodiversity movement, but there is never anything said about what the movement actually is. All you'd really know after reading is that autistic people themselves lead the movement and parents of autistic kids typically don't like it. Essentially, that's all you're given. There could have been a much deeper exploration of the topic, especially since it's such a big one right now. This is especially frustrating considering the amount of pages given to the anti-vaccine crowd when their point-of-view holds no water. (The book doesn't defend the vaccine argument. I'm merely complaining here about the amount of pages given to vaccines versus neurodiversity.)

What bothered me more than anything else in the neurodiversity section, though, was something said about an autistic person and advocate within the neurodiversity movement. The book tells the story of the mom of an autistic child confronting an autistic person. (This story is told from the mom's point-of-view because, as I've said, the book doesn't like to get into autistic people's heads and get things from their point-of-view.) The mom doesn't agree with the neurodiversity movement, so she the autistic person. We're not given any specifics about what they say to each other, just that they both describe their own beliefs.

What we are given is the mother's thoughts on the autistic person after they speak. She dismisses his entire argument because she believes that he lacks empathy. This angered me for a number of reasons. For one, there are plenty of autistic people who will insist that they do feel empathy; the difference is that they don't express it in the ways non-autistic people do.

In addition to that, this section of the book is the closest we get to hearing an autistic person's own view on autism, and we don't actually hear anything about their view. We just have their view dismissed because they "lack empathy". Since this is widely considered an autistic trait, it's incredibly convenient if you can dismiss anything an autistic person says because they "lack empathy". In fact, it seemed to me to be utterly lacking in empathy to dismiss someone's argument in such a way. It gives all non-autistic people the license to never listen to autistic people and that is a worrying road to go down (but also one that we seem to already be on).

Of course, as this is a book about autism, Autism Speaks is discussed. While the book doesn't present Autism Speaks in an entirely positive light, they also don't go into all of the controversy surrounding Autism Speaks, only a very small portion of it. Because of that, I don't believe many people reading this who don't know just what is wrong with Autism Speaks would actually understand the issue after reading this book. This is another area where the book would have greatly benefited from focusing more on what autistic people themselves have to say as there is such vocal opposition to Autism Speaks within the autistic community. (Receiving the amount of backlash towards your organization from the very community you're supposedly helping as Autism Speaks receives from the autistic community is never a good sign.)

Overall, this book gave me the same impression that a lot of mainstream autism activism gives me: They are far more focused on the non-autistic people who are around autistic people than on autistic people themselves. The book would have benefited from trying to look at autistic peoples' experiences instead of just their families' experiences, trying to understand why autistic people act the way they do, and actually sharing what autistic people have to say, not just what their parents have to say.

I received this book in exchange for an honest review through Blogging for Books.

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