PDF Ebook In a Different Key: The Story of Autism
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In a Different Key: The Story of Autism
PDF Ebook In a Different Key: The Story of Autism
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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. 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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Product details
Hardcover: 688 pages
Publisher: Crown; 1 edition (January 19, 2016)
Language: English
ISBN-10: 0307985679
ISBN-13: 978-0307985675
Product Dimensions:
6.5 x 1.9 x 9.6 inches
Shipping Weight: 2.2 pounds
Average Customer Review:
4.6 out of 5 stars
196 customer reviews
Amazon Best Sellers Rank:
#222,952 in Books (See Top 100 in Books)
I first checked this book out at my local library out of curiosity, since some of my family members, including me are autistic. I was hesitant that it might be a hard read or a boring read. What a surprise! This book is riveting! I immediately ordered myself a copy and am still reading it. Since that time, I have purchased another copy to pass around my family so I can keep my own copy at home. Great book. Well researched. This is a book that I will value for a long, long time.
As a mom to a child with autism, this was a much needed read. It didn't teach me much about my daughter (except that her impressive indifference to cold is apparently part of her autism). But it gave me a whole lot of perspective, and filled me with gratitude - for all the people who worked so hard to get to where we are today, where a diagnosis leads to services rather than blame and institutionalization. What individual parents were able to accomplish is so inspiring, it has me reevaluating what more I could be doing. The book was well written and drew me in quickly. Somewhere after the first 300 pages it became a little slower, but there was always enough to keep me reading and I'm very glad I did.
I gave this book five stars because it not only did a great job of giving a chronological history of the disorder, but of also making it a personal story that many people can relate or empathize with. Many people I know do not fully realize what autism is, and usually have ideas about it that are not completely true. I would recommend this book to anyone who is curious about the disorder or who are directly involved with it (those who have autism, parents of autistic individuals, and therapists that work with autistic people).
This book was not always easy to read, as some of the history was disturbing, but I learned so much about how we have gotten to where we are now. As with many new medical conditions there is a lot of trial and error to go through before figuring out just what you're dealing with. There were so many heroes along the way sacrificing so much to get their story told so that people would know about what life was like for the families affected by autism. I appreciated the time line at the end to help put all the characters and events into chronological order to serve as a review.
Having an autistic son who is diagnosed as an Asperger's I was very interested in this book and what it had to say of the spectrum. Many of the people talked about in the book I had read about or had read what they had written but it was good to read the comparisons of the different groups. It would be very helpful to all parents if there was one place where all of the information could be found instead being so disjointed.
I have a son-in-law who is autistic. This book has been so helpful in understanding how to help him during visits to our home. It also makes me appreciate how hard it is for him to get out of the comfort of his home. He truly is quite brave!
Very informative. It brings to life the reality of Autism in a truly readable, interesting way. I learned a lot. Living with a child with autism born in the early 80's and having to research and find someone to help me figure out how to help her, I can tell you this book has given me a lot of understanding about the struggles that I was not aware of.
This is an extraordinary book. John Donvan is a television correspondent for ABC, and Caren Zucker is a journalist and producer. Together, they have dug deep into the history of autism – from an unknown psychiatric disorder to a diagnosis climbing from 4 to 5 cases per 10,000 people in 1966 to approximately 1 per 100 today. Donvan and Zucker tell the story of autism in 46 fast-paced chapters, presenting detailed accounts of the biographies of the characters: parents, children, psychologists, physicians, advocates and more --- each viewed as if seen through a hand held camera. When a child in a family is not right, the whole family suffers.Such was the case when Donald who was born in 1933 to affluent parents in Forest, Mississippi.Donald was an odd child:When he was seven, an examiner asked him a question for the Binet-Simon IQ test. If I were to buy four cents’ worth of candy and give the storekeeper ten cents, how much would I get back? I’ll draw a hexagon, Donald replied….He showed scant interest in the inhabitants of the outside world, and that included his parents. Of all his peculiarities, this was the most difficult for them to accept – that he never ran to his father when he came home from work, and that he almost never cried for his mother. Relatives were unable to engage him…Oblivious to those around him, he would turn violent the instant his activities were interrupted…it became clear he was protecting sameness. Mary Triplett, Donald’s mother concluded that he was hopelessly insane, before the diagnosis of autism was invented. Her husband, Oliver, a lawyer, was known as Beamon to everyone, and was the former mayor’s son. Their doctor advised them that they had overstimulated Donald and he should be placed in an institution.During the first half of the twentieth century, children like Donald were called a string of derogatory labels:Cretin, ignoramus, simpleton, maniac, lunatic, dullard, dunce, demented, derange, schizoid, spastic, feebleminded, and psychotic. Even in Dr. Benjamin Spock’s (1903 – 1998), “The Common Sense Book of Baby and Child Care,†first published in 1946, he recommended that parents immediately place a Mongolian baby in an institution.For families like Donald’s, sending their child to an institution far from their home created shame, guilt, sorrow, confusion and loss:They sent away their children in secret, and in time, the children themselves became secrets, never to be spoken of again. Mr. and Mrs. Triplett brought Donald back home from the institution and took him to be evaluated by the eminent child psychiatrist Leo Kanner (pronounced “Kahnerâ€; 1894 - 1981) at Johns Hopkins hospital in Maryland.Donald was case number 1 in Kanner’s major work published in 1943, “Autistic Disturbances of Affective Contact.†Dr. Kanner studied eleven cases, 3 girls and 8 boys, he later called autism. â€It was Kanner who identified the two defining traits common to all of them: the extreme preference for aloneness and the extreme need for sameness.†Donald is now 82 years old. The first time I evaluated an autistic child in the 1970s, I met two warm, loving, guilt-ridden parents telling me through their tears about their unresponsive, odd five year old child who didn’t talk and was obsessed with playing with door knobs and hinges. When this child entered my office, he walked past me as if I wasn’t there and went straight to the curtain and began sucking the on the cloth. I was aware that blaming mothers for causing autism --- and other psychiatric disorders --- was the theory many clinicians studied to diagnose and treat autistic children. Bruno Bettelheim (1903 – 1990), a prominent child psychologist, who had a Ph.D. in art history, was a famous clinician who promoted that theory. He wrote and lectured that “refrigerator mothers†raised their children in a climate of emotional frigidity causing autism. Bettelheim recommended a “parentectomyâ€, taking these autistic children away from their parents and putting them in a therapeutic milieu. Bettelheim founded the Orthogenic School at the University of Chicago as a residential treatment program. I couldn’t square my subsequent many encounters with autistic kids and their parents with the refrigerator mother theory expressed in Bettelheim’s famous book The Empty Fortress. My doubts about this blame the mother theory of autism were reinforced in a yearlong seminar taught by Fritz Redl, a contemporary of Bettelheim, and a brilliant teacher and writer. In this seminar of 8 students, 3 of the students had worked for Bettelheim, whose nickname they said was Bruno Brutalheim --- because of how he treated staff, children and parents. In 1990 Bettelheim committed suicide, his method placing a plastic bag over his head. My thought was he recognized the monstrous damage he inflicted on children and their families with his cockamamie theory and treatment approach to autism. But who can know for sure. Donvan and Zucker uncover the stories of courageous characters who fought against the blame theory of autism. Scientists, sometimes with an autistic child of their own, and parents of autistic kids worked tirelessly to get kids out of institutions, band together to make the education establishment teach autistic kids in public schools, find behavioral treatments that worked, and more.The media did much to broadcast and humanize the life of autistic people For example, the brilliant movie “Rain Main’ told the sensitive story about an autistic man starring Dustin Hoffman (1937 - ); Temple Grandin (1947 - ), the first celebrity autistic adult with a Ph.D. in biological sciences and a professor of animal sciences at Colorado State University wrote best-selling books about growing up with autism and lectures around the world.. A movie about the life of Temple Grandin garnered rave reviews, starring Claire Danes (1979 - ). Oliver Sacks (1933 – 2015), the brilliant neurologist, wrote a book of essays called, “Anthropologist on Mars,†with the title referring to his chapter on Temple Grandin. Along the way there were many missteps among autistic advocacy groups and scientific findings:It was an early harbinger of the tragic tendency of autism advocacy groups, or individuals in them, all supposedly dedicated to the same cause, to turn against one another. It had been there at the beginning, and it would flare up, again and again, to the detriment of the greater cause, in every decade to follow. In 1998, a British physician published a shocking paper in the well-respected Lancet journal claiming that the MMR (measles-mumps-rubella) vaccine may cause autism. The study was eventually discredited, the physician lost his license, but not without significant panic in the community about the safety of giving children vaccines. Many educated people stopped giving their children the MMR vaccines and “measles was becoming active again the United States, with reported infections reaching a twenty –year high in 2014.†Whether we are witnessing a true increase in the autistic population, or whether the definition of autism on a spectrum makes the difference in numbers remains controversial. Because we know so little about the complex etiology of autism, crank, expensive treatments masquerading as science promising quick cures lurk at the doors of progress, waiting to lure parents down the road of danger psychiatric misadventures. Advocacy for autistic children and adults is essential and must be driven by scientists.
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