Publication Date: January 17, 2017
Publisher: Broadway Books
Goodreads Rating: 5/5 Stars
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.
At first, I was hesitant to read In A Different Key due to some of the negative reviews. Having two Autistic Nephews and one Autistic Niece, I was afraid I would personalize the abysmal care that was given to patients at the Institutions. After reading the book I can say that ignoring those reviews was the best thing I did.
I think some people went into it expecting a first-person narrative, not knowing it was a historical timeline of the major milestones, from 1930’s going into 2013. Donvan and Zucker have clearly done their research and it shows. The subject of Autism and Asperger’s is such a delicate subject to approach and they did it with concern on the subject matter and approached it as delicately as one could.
Are there therapies that were used that were abysmal, yes. I believe though that we need to know what was tried and the horrible aspects of it so that history will not repeat itself, in ignoring the past we are only doomed to repeat the failures in the future. The authors approach each therapy by going into the details, but not subject the reader to an overload information.
The number of things I learned from In A Different Key was astounding. My family has read numerous books regarding Autism, most of them from parents, advocates, doctors and ones who are Autistic themselves. There was nothing out there that basically shows some sort of timeline in how the name Autism or Asperger’s came into play. This book has so many key points in it, even as far back as five hundred years ago, in what people called “Holy Fools”. Then moving through to 1910 when the term “Autistic Thinking” was coined by Dr. Bleuler. From there it goes through numerous other areas, like Institutions, Refrigerators Moms, LSD, the different advocacy groups formed, the development of ABA, the Epidemic of Autism, vaccines and today’s therapy.
I recommend this book to everyone, including those who do not have or do not know a child affected by Autism or Asperger’s. It really has opened my eyes to how far the diagnosis has come and yet how far we have to go.