Finalist for the 2017 Pulitzer Prize in General NonfictionAn 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. … 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.
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Excellent writing. Interesting from the first page to the last. I don’t have a child with Autism Spectrum Disorder, but I feel a tremendous empathy for parents who are grasping for solutions and ways to help their children.
A real eye-opener. Your heart aches for the families experiencing the frustrations associated with the diagnosis of autism and admiration for their perseverance and triumphs.
This book offers a fascinating look at the ways in which people have thought about autism, and how it came to be diagnosed. At over 500 pages, this book covers tremendous ground, but it is far more interesting than one might expect a history of a medical and psychological diagnosis to be. At the center of this book are a group of parental activists and scientists who have pushed for funding and research. Indeed, much of the agency in this book goes to the parents, who have tirelessly sought recognition, therapies, and funding for their children. As with most social movements, that for the recognition and research of autism has been riven with controversy and division, and these fractures are well-covered in the book, including the recent vaccine controversy. What I found most interesting, though, was the early material. Aside from the blaming of “refrigerator mothers,” I knew very little about early conceptions of autism.
While this book is quite long and covers a great deal of ground, it is important to understand its limitations. This is not a book about what it is like to have autism, or what it was like earlier in the twentieth century. Though we get some hints into the lives of children with autism, that is not the focus here. What is the focus is how a scientific field and a rights movement was created, as parents worked to secure basic rights for their children (most notably, the right to attend school), and tried to persuade scientists to study the syndrome.
Note – review of audiobook
This book moved me deeply – at times horrifying and hopeful, it captures the essence of autism while documenting the history of the diagnosis and its treatments. As a mother of a son with Aspergers syndrome, I was galvanized by story after story of parent advocates who organized and changed how children and adults on the spectrum are viewed and treated – which is a fight that continues in today’s political climate, particularly in terms of equal educational opportunities. As a scientist, it both enlightened and frustrated me, as concrete diagnostic criteria and and understanding of the biological and genetic basis for the spectrum of disorders remain elusive. Ultimately, however, the book paints a very hopeful picture for the future of autism research and interventions.
Good for anyone with friends or relatives on the asberger’s/autism spectrum.
This book was very informative. I’ve learned so much about the history of autism.
A must read for anyone interested in the history of autism.
This book is a brilliant, beatifully written, explanation of autism and a crystal clear depiction of what it might be like to raise a child who is so afflicted. It was a revelation to me because I was totally ignorant regarding autism, it’s history, it’s trials and it’s treatment. I highly recommend it to everyone.
Solid information about autism, its history and research. Very readable.
If you know anyone suffering from AUTISM, this book will help you what they and their parents have gone through.
I will be taking an aspergers student abroad with a group for several months. Had hoped to learn s bit of how to support this person. The book was not really helpful in that respect–it is more a history than a guide to interacting–but interesting nonetheless.
I enjoyed learning about autism as so many children are these days. Seems people need a label, autism was thought to be insane, schizo, dumb. This book explains how the name became autism the name. So many degrees of this -ism that the name alone does not tell you the many facets of autism.
Fascinating and sometimes haunting review of the twists and turns of the diagnosis of autism. Family members have been diagnosed with Aspergers Syndrome and I came to understand why including that diagnosis in the spectrum is a useful change.
Learning about autism is very interesting. The history of diagnosis and treatment shows a difficult path for families and their children. Hope the future continues to brighten.
It was a reasonably informative book.