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The Reason I Jump: one boy's voice from the silence of autism (English Edition)
 
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The Reason I Jump: one boy's voice from the silence of autism (English Edition) [Format Kindle]

Naoki Higashida , David Mitchell
5.0 étoiles sur 5  Voir tous les commentaires (2 commentaires client)

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Descriptions du produit

Extrait

Introduction
David Mitchell

The thirteen-year-old author of this book invites you, his reader, to imagine a daily life in which your faculty of speech is taken away. Explaining that you’re hungry, or tired, or in pain, is now as beyond your powers as a chat with a friend. I’d like to push the thought-experiment a little further. Now imagine that after you lose your ability to communicate, the editor-in-residence who orders your thoughts walks out without notice. The chances are that you never knew this mind-editor existed, but now that he or she has gone, you realize too late how the editor allowed your mind to function for all these years. A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably. Your editor controlled this flow, diverting the vast majority away, and recommending just a tiny number for your conscious consideration. But now you’re on your own.

Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you’re in has no door or window, and relief will come only when you’re too exhausted to stay awake. To make matters worse, another hitherto unrecognized editor has just quit without notice—your editor of the senses. Suddenly sensory input from your environment is flooding in too, unfiltered in quality and overwhelming in quantity. Colors and patterns swim and clamor for your attention. The fabric softener in your sweater smells as strong as air freshener fired up your nostrils. Your comfy jeans are now as scratchy as steel wool. Your vestibular and proprioceptive senses are also out of kilter, so the floor keeps tilting like a ferry in heavy seas, and you’re no longer sure where your hands and feet are in relation to the rest of you. You can feel the plates of your skull, plus your facial muscles and your jaw; your head feels trapped inside a motorcycle helmet three sizes too small which may or may not explain why the air conditioner is as deafening as an electric drill, but your father—who’s right here in front of you—sounds as if he’s speaking to you from a cellphone, on a train going through lots of short tunnels, in fluent Cantonese. You are no longer able to comprehend your mother tongue, or any tongue: from now on, all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour, as if you’ve been entombed in an Emily Dickinson poem about eternity, or locked into a time-bending SF film. Poems and films, however, come to an end, whereas this is your new ongoing reality. Autism is a lifelong condition.

Thanks for sticking to the end, though the real end, for most of us, would involve sedation and being forcibly hospitalized, and what happens next it’s better not to speculate. Yet for those people born onto the autistic spectrum, this unedited, unfiltered and scary-as-all-hell reality is home. The functions that genetics bestows on the rest of us—the “editors”—as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the autistic people who undertake it aren’t heroes, then I don’t know what heroism is, never mind that the heroes have no choice. Sentience itself is not so much a fact to be taken for granted, but a brickby-brick, self-built construct requiring constant maintenance. As if this wasn’t a tall enough order, people with autism must survive in an outside world where “special needs” is playground slang for “retarded,” where melt-downs and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers, and where British foreign policy can be described as “autistic” by a French minister. (M. Lellouche
apologized later, explaining that he never dreamed that the adjective could have caused offense. I don’t doubt it.)

Autism is no cakewalk for the child’s parents or carers either, and raising an autistic son or daughter is no job for the fainthearted—in fact, faintheartedness is doomed by the fi rst niggling doubt that there’s Something Not Quite Right about your sixteen-month-old. On Diagnosis Day, a child psychologist hands down the verdict with a worn-smooth truism about your son still being the same little guy that he was before this life-redefining news was confirmed. Then you run the gauntlet of other people’s reactions: “It’s just so sad”; “What, so he’s going to be like Dustin Hoffman in Rain Man?”; “I hope you’re not going to take this so-called ‘diagnosis’ lying down!”; and my favorite, “Yes, well, I told my pediatrician where to go stick his MMR jabs.” Your first contacts with most support agencies will put the last nails in the coffin of faintheartedness, and graft onto you a layer of scar tissue and cynicism as thick as rhino hide. There are gifted and resourceful people working in autism support, but with depressing regularity government policy appears to be about Band-Aids and fig leaves, and not about realizing the potential of children with special needs and helping them become long-term net contributors to society. The scant silver lining is that medical theory is no longer blaming your wife for causing the autism by being a “Refrigerator Mother” as it did not so long ago (Refrigerator Fathers were unavailable for comment) and that you don’t live in a society where people with autism are believed to be witches or devils and get treated accordingly.

Where to turn to next? Books. (You’ll have started already, because the first reaction of friends and family desperate to help is to send clippings, Web links and literature, however tangential to your own situation.) Special Needs publishing is a jungle. Many How to Help Your Autistic Child manuals have a doctrinaire spin, with generous helpings of © and ™. They may contain usable ideas, but reading them can feel depressingly like being asked to join a political party or a church. The more academic texts are denser, more cross-referenced and rich in pedagogy and abbreviations. Of course it’s good that academics are researching the field, but often the gap between the theory and what’s unraveling on your kitchen floor is too wide to bridge.

Another category is the more confessional memoir, usually written by a parent, describing the impact of autism on the family and sometimes the positive effect of an unorthodox treatment. These memoirs are media-friendly and raise the profile of autism in the marketplace of worthy causes, but I have found their practical use to be limited, and in fairness they usually aren’t written to be useful. Every autistic person exhibits his or her own variation of the condition—autism is more like retina patterns than measles—and the more unorthodox the treatment for one child, the less likely it is to help another (mine, for example).

A fourth category of autism book is the “autism autobiography” written by insiders on the autistic spectrum, the most famous example being Thinking in Pictures by Temple Grandin. For sure, these books are often illuminating, but almost by definition they tend to be written by adults who have already worked things out, and they couldn’t help me where I needed help most: to understand why my three-year-old was banging his head against the floor; or flapping his fingers in front of his eyes at high speed; or suffering from skin so sensitive that he couldn’t sit or lie down; or howling with grief for forty-five minutes when the Pingu DVD was too scratched for the DVD player to read it. My reading provided theories, angles, anecdotes and guesses about these challenges, but without reasons all I could do was look on, helplessly.

One day my wife received a remarkable book she had ordered from Japan called The Reason I Jump. Its author, Naoki Higashida, was born in 1992 and was still in junior high school when the book was published. Naoki’s autism is severe enough to make spoken communication pretty much impossible, even now. But thanks to an ambitious teacher and his own persistence, he learned to spell out words directly onto an alphabet grid. A Japanese alphabet grid is a table of the basic forty Japanese hiragana letters, and its English counterpart is a copy of the qwerty keyboard, drawn onto a card and laminated. Naoki communicates by pointing to the letters on these grids to spell out whole words, which a helper at his side then transcribes. These words build up into sentences, paragraphs and entire books. “Extras” around the side of the grids include numbers, punctuation, and the words finished, yes and no. (Although Naoki can also write and blog directly onto a computer via its keyboard, he finds the lower-tech alphabet grid a “steadier handrail” as it offers fewer distractions and helps him to focus.) Even in primary school this method enabled him to communicate with others, and compose poems and story books, but it was his explanations about why children with autism do what they do that were, literally, the answers that we had been waiting for. Composed by a writer still with one foot in childhood, and whose autism was at least as challenging and life-altering as our son’s, The Reason I Jump was a revelatory godsend. Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words.

The book goes much further than providing information, however: it offers up proof that locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s. During the 24/7 grind of being a carer, it’s all too easy to forget the fact that...

Revue de presse

A book that acts like a door to another logic, explaining why an autistic child might flap his hands in front of his face, disappear suddenly from home - or jump. (Sunday Telegraph - Neil Tweedie)

A book that makes me want to say, "This is truly important, and anyone interested in autism should read it," is a rare find. The Reason I Jump achieves that status . . . [it] builds one of the strongest bridges yet constructed between the world of autism and the neurotypical world . . . There are many more questions I'd like to ask Naoki, but the first words I'd say to him are "thank you". (The Sunday Times - Charlotte Moore)

Every page dismantles another preconception about autism. Higashida's language is precise and has a poetic quality that elevates it far beyond a self-help book for the parents of autistic children. His fictional stories, also included in this book, vary in length from a few lines to dozens of pages and are united by their beautiful simplicity. They all share a strong single theme, namely, that even if living is different and difficult, you can still find companionship and happiness. Once you understand how Higashida managed to write this book, you lose your heart to him. (New Statesman - Caroline Crampton)

This is a wonderful book. I defy anyone not to be captivated, charmed and uplifted by it. But above all, you will never feel the same about autism again. (Evening Standard - John Preston)

We have our received ideas, we believe they correspond roughly to the way things are, then a book comes along that simply blows all this so-called knowledge out of the water. This is one of them . . . This book is an entry into another world. It was discovered by K.A. Yoshida, wife of the novelist David Mitchell, who gave us some memorable other worlds in Cloud Atlas . . . Naoki says he wants to be a writer when he grows up. David Mitchell points out that he already is one. This spectacular little book may or may not be the beginning of a prolific career, but it's a wholly realised work of art in itself, and its dignity and stoicism are sometimes almost unbearably moving. And no, he doesn't wish he was 'normal'. He says he is happy as he is, and I think I believe him. (Daily Mail - Marcus Berkmann)

As much a winsome work of the imagination as it is a user's manual for parents, carers and teachers. In its quirky humour and courage, it resembles Albert Espinosa's Spanish bestseller, The Yellow World . . . This book gives us autism from the inside, as we have never seen it. (Independent)

The freshness of voice coexists with so much wisdom . . . it will stretch your vision of what it is to be human. (The Times - Andrew Solomon)

The Reason I Jump reads effortlessly, each page challenging preconceptions that autistic people lack empathy, humour or imagination. Higashida's insights confirm some of my suspicions (perhaps the phrases that my sister repeats feel pleasurable, 'like a game of catch with a ball'), whilst challenging others . . . And raising new possibilities. (Independent on Sunday)

The most remarkable book of the year was The Reason I Jump by Naoki Higashida. The book throws a pontoon bridge over the chasm dividing autistic and neuro-typical experience. (Spectator Books of the Year 2013 - Charlotte Moore)

Written by an autistic Japanese boy when he was just 13, this remarkable book, which became a No. 1 Sunday Times bestseller earlier this year, offers an unparalleled view inside the closed world of childhood autism. Higashida's eye-opening answers to 58 questions - such as: "Why do you ask the same questions over and over?" or: "Why can you never stay still?" - are accompanied by a series of short tales, and an introduction from the novelist David Mitchell (who has an autistic son himself) that makes clear just how exceptional and rare this book is. (Sunday Times - Andrew Holgate)

An extraordinary account of how autism feels from the inside (Observer)

A remarkable memoir. A touching and fascinating guide to the tangled byways of his mind. Every page dismantles another of our preconceptions about autism. (Mail on Sunday)

[The Reason I Jump] has been impossible to forget. (Evening Standard Books of the Year 2013 - Ian Thomson)

Détails sur le produit

  • Format : Format Kindle
  • Taille du fichier : 1341 KB
  • Nombre de pages de l'édition imprimée : 193 pages
  • Pagination - ISBN de l'édition imprimée de référence : 1444776754
  • Editeur : Sceptre (1 juillet 2013)
  • Vendu par : Amazon Media EU S.à r.l.
  • Langue : Anglais
  • ASIN: B00BMUVVG4
  • Synthèse vocale : Activée
  • X-Ray :
  • Moyenne des commentaires client : 5.0 étoiles sur 5  Voir tous les commentaires (2 commentaires client)
  • Classement des meilleures ventes d'Amazon: n°50.360 dans la Boutique Kindle (Voir le Top 100 dans la Boutique Kindle)
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2 internautes sur 2 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 beautiful 15 juillet 2013
Par Zephora
Format:Format Kindle|Achat vérifié
A voyage into the world as experienced by a boy with autism. Evidently each person touched by autism has their own autism but there are common themes and traits. He brings his insights on his autism and the world he lives in to life with a clarity and honesty that is poetic and profoundly moving. Naoki merits an enormous "Thank you" for allowing us to share his life for a few moments.
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5.0 étoiles sur 5 beautifully written 9 août 2014
Format:Format Kindle|Achat vérifié
very touching and having a child with autism myself this book has helped me to understand my son a little better.
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Amazon.com: 4.5 étoiles sur 5  1.169 commentaires
193 internautes sur 202 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 My Brother Also Jumps 7 septembre 2013
Par C. Wong - Publié sur Amazon.com
Format:Relié
I read a lot of books about autism because my brother is severely autistic. I am very thankful to Nagoki Higashida for answered questions that I have about my brother's behavior and the way that he thinks. And also answering some questions that had not even occurred to me! His voice came through this book as very genuine and I have recognized some of the same feelings in my brother as Nagoki Higashida.

In fact I wish that my brother had the experience of being trained to use the special keyboard. So many things are locked inside for my brother but Nagoki been has let some of them out via the keyboard.
My brother also jumps. He always does this just before he starts a walk. He also loves to walk in places filled with nature. He wanted to go to a park when I asked him where on our latest visit. I have read quite a few books written by Asperger's but this one by a boy who has autism rings home for me. My brother can speak but usually he does not initiate any conversation, he is limited to a few words of a reply. I can see the struggle that he goes through when he is trying to "grab" something to say.

I was aware of the overload of senses but I didn't realize that the floors could be tilting for him. That must be why he touches the wall here and there trying to get some balance.

I thought that the author really conveyed how regular people can hurt people with autism's feelings. I knew that from being with my brother. I have heard people talk about my brother in front of him and that is mean. I know the author would feel the same way.

This book is very valuable for understanding autism and I wish that caregivers in group homes and others who work with people who have autism would read this book.

When I read this book, I truly wanted more. I am hoping that there will be a place in the future where we can send out questions to you. I have so much more that I want to learn. If you have a family member who has autism please read this book.

I received this book as a win from FirstReads but that in no way influenced my thoughts or feelings in the review.
295 internautes sur 342 ont trouvé ce commentaire utile 
3.0 étoiles sur 5 Ambivalence 3 octobre 2013
Par reader - Publié sur Amazon.com
Format:Relié
Another reviewer of this book gave it 1 star, apparently because she questioned its authenticity. That is, she questioned whether it is truly the work of an autistic young man, as it is claimed to be. Considering the book's subject matter, it is perhaps not surprising that her suspicion was met with sometimes vitriolic comments, as some readers seemed to take it as an affront to their intensely-lived personal experience. But at the risk of attracting similar attacks, I must admit to my own kind of skepticism.

Certainly, the aforementioned reviewer's focus on word choice is irrelevant here as a criterion by which to infer authorship, as this is a translation. But I agree with that reviewer's concern about the author's tendency to speak for all autistic people. Though some comments questioned this observation, it is not merely an interpretation or projection; Mr. Higashida does in fact repeatedly and explicitly speak for all autistic people. If you don't yet have the book, you can see just as well in the preview the repeated use of "we" or "us" in phrases and sentences that characterize a behavior, attitude, belief or experience as common to all autistic people. This is an appropriate cause for concern, as there is great diversity in all populations, including those with autism. It would be unfortunate if readers without direct experience to the contrary were misled into thinking that one autistic person can speak for all.

So it is offensive that several comments insult that reviewer for observing this tendency, accusing her of inventing this notion, as if it is she who thinks all autistic people are alike. Such rough treatment demonstrates the most dangerous kind of ignorance, the kind that is too arrogant (or perhaps simply too necessary) to recognize itself. That is, the literal kind, in which one actively ignores relevant information to maintain an opinion.

But I only mention this because it suggests another, perhaps more fundamental, problematic I encountered in reading this book, one that may help to explain both the aggression and the seemingly willful ignorance of those reactions. As I read this book, one feeling kept insisting itself, until it was something more than a feeling, though perhaps not yet a fully-formed thought. I didn't like this thought, but I couldn't help it: It all felt too good to be true.

It seemed that everything this young man thought and said was so... perfect. So perfectly what his mother, or perhaps any parent in a similar position, maybe all those who care for loved ones with autism, would wish their autistic loved one to say, if only they could, or would, or... I find it difficult to follow this through. It seems wrong even to question it.

But I recognized in these pages again and again this 'wish-fulfillment' quality, until it was difficult to ignore and, as in a dream, I began to question their reality. Waking life is just so seldom so in accord with my wishes.

For these reasons and others, I don't think it inappropriate to wonder aloud about how many acts of translation took place between the various way-points in this book's journey to this publication, and how they might have shaped the text as it is now. After all, just a list of the most obvious intermediaries suggests a game of telephone: there's Mr. Higashida himself, his mother who invented his method of communication, the Japanese editor(s) and publishers, Ms. Yoshida the translator into English, David Mitchell her husband and co-translator, the English editor(s) and publishers, and who knows how many others along the way. All of these people were translators of a sort, and at least a plurality of these translators have personal (and therefore inevitably complicated, emotional, fraught) relationships with loved ones with autism.

Because there can so often seem to be such an unbridgeable gulf between, as Mr. Higashida puts it, 'earthling' and 'autisman' (and of course here I'm thinking especially of the more severe instantiations), and because it is in that gulf that the messy stuff of life happens, it must be that each of those translators wish as intensely as any of us do to leap, to soar across, intact and understood. It must be that so many of them, like so many of us, have no greater wish than to meet a perfect representative. To meet one who can speak from the other side, on this side, one who will tell us exactly what we have always hoped is true.

Perhaps there is value in this book, then, whether it truly bears that wish-fulfilling voice, or merely approximates it. But as for me, I find myself still inside, not yet across, the gulf.
68 internautes sur 79 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 Looking inside a wonderful mind. 5 septembre 2013
Par Reviewer#1 - Publié sur Amazon.com
Format:Format Kindle|Achat vérifié
I loved this book. As a grandmother of an autistic child, I expected some more of the same prittle prattle about this unique ability. This book confirms the suspicions of our whole family has about our 10 year old and gave us tools and understanding that we previously just wished we had. This is a must read by all those who love children and desire they achieve the most in life that is possible. The School teacher, the Sunday School teacher, the day care worker, the mother, dad, sibling, cousin, aunt, uncle, etc. would be positively influenced by this unusual interview. We will buy a hard copy to share with everyone we know and knows our child.
123 internautes sur 147 ont trouvé ce commentaire utile 
3.0 étoiles sur 5 Confusing to one with mild autism - 3 octobre 2013
Par Loyd E. Eskildson - Publié sur Amazon.com
Format:Relié
The book's author is a 13-year-old Japanese young autistic male. The book was originally published in Japan, in 2007. Persons with autism tend to end up alone in a corner because communication for them is so fraught with problems. Emotional poverty and an aversion to company are consequences of autism.

Naoki begins by tell us that he has difficulty trying to speak with others, though he does better with writing. He also has difficulty remembering, and therefore repeats questions. Another problem - he doesn't look at people's eyes very much - it feels creepy so he avoids it. He's usually anxious that he's causing trouble for others or getting on their nerves, making it hard to stay around others. Lining things up is a classic autistic trait.

It is hard to know what to make of the book. I'm mildly autistic, and share a number of the traits mentioned by Naoki, including most of those already listed. However, when the translator (David Mitchell) concludes that, contrary to common perception, autistic people are overly sensitive, not insensitive to others' feelings, I strongly disagree - I've always had difficulty 'reading' others and their actual/potential reactions to what I might say or write - even though I've made increasing efforts to do so as I've gotten older. As for 'jumping,' I thought the topic would focus on panic attacks (loud noises, bright lights) - another lifelong and increasing problem for myself. Nor, unlike Naoki, do I talk loudly, speak in a peculiar way, take ages to respond to questions, or ask the same questions repeatedly.

On the + side, I've done well as computer programming, a task many others find tedious and reportedly a strength of many with autism. On the other hand, I also find most repetitive tasks boring.

I also have a number of additional classic autistic symptoms. I dislike changes in routines, am preoccupied with a few interests and am quite knowledgeable about them, am relatively uncoordinated, strongly dislike reading fiction, constantly look for and find patterns in numbers and license plates, and find it very hard to make new friends. But I also have considerable difficulty mentally rotating complex structures - reportedly a strength of those with autism. The bottom-line - it seems like those with autism, while sharing many similarities, also can be quite different. Perhaps that was why it was much more difficult for me to really understand Naoki, even taking his greater communications disability into account.

What does this mean, or say about the book? I honestly don't know. While I greatly respect the author and the greater difficulty he has communicating than do I, the book just didn't bring any insights to me.
28 internautes sur 35 ont trouvé ce commentaire utile 
2.0 étoiles sur 5 Something doesn't feel right 10 octobre 2013
Par Loriesolly - Publié sur Amazon.com
Format:Relié|Achat vérifié
I think for a parent who has a kid with autism, this book is a godsend. When the days are filled with the reality that is autism, it's probably quite lovely to read a book from your child's point of view - a hopeful love note if you will. "I'm in here Mom - I really am!" But as a speech-language pathologist who has made it her career to work at the educational level with kids with autism, something doesn't ring true for me. From the moment I started reading it, I felt it was contrived, disingenuous. The prompted questions. The perfect responses. The jigsaw puzzle analogies - so similar to the Autism Awareness car magnets that are made to look like jigsaw puzzles. It felt a lot like what a parent might write about his or her kid with autism. I don't think the Japanese to English translation helps either. I thought Naoki sounded more like an old Irish guy than a 13 year old Japanese kid. Foodstuff? I've never heard any kid - autistic or not - use that word. The book did not feel authentic to me.
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