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In a Different Key: The Story of Autism Broché – 19 janvier 2016

Édition en Anglais de John Donvan (Auteur), Caren Zucker (Auteur)

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The first child to be diagnosed with autism, Donald Triplett, was born more than eighty years ago in Mississippi, and in the years that followed, autism remained a rare condition, limited to the eleven children mentioned in the article announcing the disorder's discovery. Today physicians, parents and politicians regularly speak of an epidemic of autism. In a Different Key is the extraordinary story of the quest to understand autism. By introducing an unforgettable cast of children, families and clinicians, award-winning journalists John Donvan and Caren Zucker unearth the humanity at the heart of the scientific effort to treat this condition.

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Nombre de pages de l'édition imprimée

688 pages
Langue

Anglais
Éditeur

Allen Lane
Date de publication

19 janvier 2016
Dimensions

15.3 x 3.7 x 23.4 cm
ISBN-10

0241261635
ISBN-13

978-0241261637
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Description du produit

Biographie de l'auteur

John Donvan (Author) John Donvan is a multiple Emmy Award-winning Nightline correspondent with a long career in journalism. Prior to Nightline, he was the chief White House correspondent for ABC News. Caren Zucker (Author) Caren Zucker is an award-winning veteran television news producer who has worked most extensively with ABC News. She also produced and cowrote a six-part series on autism for PBS in 2011.

Détails sur le produit

Éditeur ‏ : ‎ Allen Lane (19 janvier 2016)
Langue ‏ : ‎ Anglais
Broché ‏ : ‎ 688 pages
ISBN-10 ‏ : ‎ 0241261635
ISBN-13 ‏ : ‎ 978-0241261637
Poids de l'article ‏ : ‎ 1 Kilograms
Dimensions ‏ : ‎ 15.3 x 3.7 x 23.4 cm

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BC

Le meilleur livre sur le sujet

Commenté en France le 29 septembre 2016

Achat vérifié

Le livre le plus complet qui existe sur le sujet. Ecrit par des journalistes, la science y est absolument complete. Mon seul reproche y est le passage sur le patriot act, qui me semble un peu faible (il y a des source comme pour tout le reste du livre mais elles ne sont pas simples d'acces). Mais ca reste un ouvrage indispensable. Bravo aux journalistes. Vraiment, bravo.

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Steve Ceresnie

children like Donald were called a string of derogatory labels

Commenté aux États-Unis le 14 avril 2018

Achat vérifié

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 “Kahner”; 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. ”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 “parentectomy”, 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 dangerous psychiatric misadventures.

Advocacy for autistic children and adults is essential and must be driven by scientists.

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R. Pollack

Fascinating and compelling reading

Commenté aux États-Unis le 12 août 2023

Achat vérifié

A little drawn-out in parts, but a great story on the history of autism and current thinking/practices

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Une personne a trouvé cela utile

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Barbara Dunlap

In a Different Key: The Story of Autism A balanced view of a complex condition

Commenté aux États-Unis le 31 janvier 2016

Achat vérifié

"In a Different Key: The Story of Autism" by John Donvan and Caren Zucker chronicles the history of autism from its earliest roots to present day. Donvan and Zucker introduce us to professionals, parents and children with autism, all grappling with defining, redefining, and addressing this complex spectrum of behaviors that overtaken their lives and demanded their attention.

Lorna Wing, noted psychiatrist who first coined the phrase "autism spectrum" wrote, "Nature never draws a line without smudging it.". Indeed, autism is as variable as the people with it... from the completely withdrawn who cannot communicate or function with any amount of independence, to people like my son Ryan (not his real name), diagnosed with Asperger's Syndrome... a high functioning form of autism on the spectrum who is "quirky", but not unable to function in the adult world on his own.

When in the third grade, Ryan was identified as gifted and talented while at the same time being considered for placement in a contained classroom with other special education students because of his poor impulse control and his high anxiety level - particularly when
transitioning from one activity to another. Ryan is very verbal. He is an encyclopedia of knowledge about sharks and dinosaurs, and more recently wrestling and politics. He can speak for hours on these areas of interest, but, much like third grade, makes little or no contact while doing so. He has never learned how to fold into a hug, and has never learned to be gentle in his physicality.

Little did we know back in the day as we searched for a comfortable place for our son in the school system, that we were dealing with a
microcosm of Donvan and Zucker's book; How did this happen? Was it our fault? How do we handle those different from ourselves? When is a quirk a disability? How do we measure success in those differently-abled? And what becomes of those more affected who, unlike Ryan, will never be able to accomplish the tasks of daily living and live independently? What is out there for them? And yet, for those like Ryan, are we overreaching in trying to "cure" what is a simple case of being a little different... a variation of normal? Are we stifling neurodiversity and doing a disservice to those who should not be labeled? These are the issues presented in "In a Different Key".

Donvan and Zucker serve the autism community well in their book. As the mother of a son on the spectrum, I finished the book feeling that not only was Ryan well represented, but his entire family as well. A great historical read, broad in scope but intimate in its story telling, this book is also about love, respect and dignity. The story of Donald Triplett, the first person diagnosed with autism. who the authors found alive and well and living in Mississippi, is a wonderful counterpoint to the lengthy history of autism. As described in their book, Triplett is a "Happy
Man", dividing his time between travelling and playing golf at the age of eighty two. "In a DIfferent Key: The Story of Autism" embraces the human condition. It is relevant to us all.

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Sam Hoffman

A Must-Read For Anyone Interested In Autism

Commenté aux États-Unis le 24 novembre 2016

Achat vérifié

The world is a better place with this book in it. I am a better person for having read this book.

All of my friends (and myself) question why a 20-year-old with no personal connection to autism would be so interested in this book. Autism has always fascinated me; I don't know why. I do know that this book answered everything I could have ever wanted to know about autism.

If only school textbooks were written like this book. The authors do such a wonderful job of taking so much information and turning it into beautiful and relatable stories. Very rarely did I feel like I was reading a biographical, non-fiction book like the ones I'm used to reading as a result of educational assignments. I think this was strengthened by the fact that the authors have backgrounds in television. They know how to tell a great human narrative.

A few months ago, late on a Saturday night on my college campus, I ran into a group of kids handing out flyers. I was about halfway through this book at the time. I thought to myself, "oh my god who the heck is bothering people at 10pm on a Saturday night." I quickly retracted my negative thoughts when I was handed a flyer about neurodiversity. I struck up a conversation with the girl who handed me the flyer. She revealed that she was on the spectrum. We spoke for 20 minutes about a range of topics from ABA to Asperger's to Neurodiversity. It was enlightening and heartening to see such passion.

As I read the latter half of the book, I frequently thought back to that conversation. I can only imagine the impact this book might have on readers who have much closer connections with people on the spectrum than I do.

The authors do a wonderful job of remaining partial and non-bias in most situation where there's neither a right or wrong to certain sides. I think right now, a very interesting debate that they pose later on in the book is whether or not autism is something to be cured. I don't know if I have an opinion on it, but I do know that I am immensely fascinated in seeing how autism develops in the future. As I grow older, I hope that my financial and professional situations will provide opportunities for me to make a difference within this community.

Thank you for a compelling book, and a wonderful journey.

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Melanie "Vaxxed & Masked" Gilbert

Out of Tune

Commenté aux États-Unis le 13 janvier 2022

Achat vérifié

No genes have been identified with autism, a neurodevelopmental condition that is characterized primarily by a “difficulty processing language and a lack of social connection.” A diagnosis is established through clinical observation of recognized traits as well as cognitive/behavioral testing. There are no biomarkers that tell a person, “You have autism.”

Donovan and Zucker introduce and anchor their comprehensive narrative around the story of Donald Triplett, the first person diagnosed with autism in 1943 at age 10. They weave in stories of families struggling to understand their child’s neurodivergent behaviors, and the hard-won work to secure them services, resources and research into a condition that resists a medical diagnosis generally required to unlock access, attention and funding.

Though a lively read, it’s not an inspiring one, as many of the profiled children maintain their insular worlds despite years of interventions and accommodations to sensitize them to their surroundings. “In A Different Key” presents compelling examples of societal change and opportunity – mostly in education - but the change is driven and facilitated by the neurotypical community and not the neurodivergent one, which, due their deficits in communication, struggles to hit the right notes.

The story closes as it opens - with Triplett, now in his eighties, continuing to live, with lots of support, in his rural Mississippi town. Throughout the book, the authors offer his life as an example of successful integration, but I read their rosy and prejudicial tale as ironically highlighting the challenge for people with autism to embrace the wider world.

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In a Different Key: The Story of Autism Broché – 19 janvier 2016

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