John Donvan

It's not entirely fair that I review this book without having reviewed NeuroTribes, a book with which it will inevitably be compared. I will have to leave it with saying that I greatly enjoyed NeuroTribes and it was one of my top books of 2015.

While In a Different Key has enjoyed positive reviews from the mainstream press, it's been received less enthusiastically by neurodiversity advocates, with one going so far as to title her review "I read [it] so you don't have to." I think that goes too far. While there is troubling language in this book (for example, readers are invited to sympathize with a father who killed his autistic son), the book adds to the history of autism. It does primarily focus on the families and researchers, and less (until the end of the book, and the initial chapters on Donald Triplett) the voices of those who are themselves autistic. As a definitive history, this is a flaw, but a great deal of the history is still enlightening and interesting. The approach is more of a survey than NeuroTribes, which focused more intensely on fewer topics. Some of the sins of tone are borne of a desire for "balance" and sympathy, even when this is not necessarily appropriate to the topic.

I would recommend tht people interested in the history of autism read both these books. NeuroTribes is more compelling as a story of autism, but In a Different Key fills in many gaps in people and chronology. The books also offer distinctly different characterizations of Hans Asperger, and readers may wish to decide for themselves.… (mere)

In a Different Key, The Story of Autism by John Donovan and Caren Zucker (pp 552 99 pages of endnotes). This tome is daunting only in its size and scope—the history and evolution of what became to be known broadly as autism—and is as engaging a book as I have read in recent months. It took many weeks to plow through, but only because it remained on my bed stand for nighttime reading, about one chapter at a time. Despite its length, at no point did I lose interest in the book’s innumerable compelling stories. Its main attraction is a narrative of individuals with autism and their families, interwoven with the challenges of medical professionals and families struggling and often failing to make sense of a wide ranging collections of baffling characteristics eventually bearing the label of autism (or an array of related terms). The story begins with a young boy with disconcerting if not alarming behaviors named Donald Triplett from Forest, Mississippi who in 1938 became known to early researcher Leo Kenner of Johns Hopkins Hospital. Through the very personal story of Donald and his family, and dozens of others, the book tracks how doctors, aggressively assertive parents, and other professionals worked through the autism puzzle, eventually bringing some degree of cohesion to a myriad of diagnoses, behaviors, prognoses, therapies, treatments, and definitions that at various points baffled, enraged, confused, and motivated everyone dealing with autism: individuals, family members, researchers, and service providers. The stories are mainly but not exclusively based in the U.S., but include the work of Austrian pediatrician Hans Asperger, Britain’s child psychologist Mildred Creek, Britain’s parent driven National Autism Society, Australian sociologist Judy Singer and facilitated language pioneer Rosemary Crossley, and the notorious British anti-vaccine physician Andrew Wakefield (among others). It also explores the role and impact of other individuals, approaches, and organizations: ABA therapies, various national and ultimately competing advocacy organizations, the now debunked but vicious refrigerator Mom causation theory, the still debated idea of facilitated communication, alternate (and controversial) therapies, the movie Rain Man’s contribution to public awareness, Temple Grandin, the continuing struggle for access to education and other services, the introduction and demise of Aspergers Syndrome, and most recently the ‘do us no harm’ self-advocacy movement. And so much more. The miracle is that all of this is written in a way that makes the reader (at least me) want to see how all of these pieces fit together (or not!) and play out. The material is kept relevant because the story never strays from details about real kids and adults with autism, and how everything impacts them, for better or worse. I LOVE this book and heartily recommend it to anyone interested in autism or who has autism in their lives. The authors make it clear that the evolutionary process is still at work, that autism puzzle remains unsolved, and that contentious and divisive issues remain. Can’t wait for the next book!… (mere)

This is a wonderful book: unsentimental, forceful, and compelling.

I happened to ask my wife one afternoon if there were more cases of autism in contemporary times or if such cases had always existed but were now simply reported more frequently. The next day, I saw In a Different Key in the library and picked it up to see if I’d find the answer. I did. That particular answer comes early in the book, which is more of a cultural and historical examination of autism than a diagnosis or scientific investigation. There are genuine plot twists as well as one episode (concerning “facilitated communication”) that reads like a treatment for a disturbing movie. It also never gets bogged down in minutiae: Donovan and Zucker respect their reader and have written a book that will appeal to laypeople and experts. Many passages provoked me into thinking about similar “scientific” facts of our times that are regarded as unshakable--but could be as wrong as those regarding the “refrigerator mothers” whom many experts (and the mothers themselves) believed to cause autism. Recommended.
… (mere)