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The Reason I Jump: one boy's voice from the silence of autism (Anglais) Relié – 1 juillet 2013

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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 the person you’re doing so much for is, and is obliged to be, more resourceful than you in many respects. As the months turn into years “forgetting” can become “disbelieving,” and this lack of faith makes both the carer and the cared-for vulnerable to negativities. Naoki Higashida’s gift is to restore faith: by demonstrating intellectual acuity and spiritual curiosity; by analysis of his environment and his condition; and by a puckish sense of humor and a drive to write fiction. We’re not talking signs or hints of these mental propensities: they’re already here, in the book which (I hope) you’re about to read. If that weren’t enough, The Reason I Jump unwittingly discredits the doomiest item of received wisdom about autism—that people with autism are antisocial loners who lack empathy with others. Naoki Higashida reiterates repeatedly that no, he values the company of other people very much. But because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, Aha, classic sign of autism, that. Similarly, if people with autism are oblivious to other people’s feelings, how could Naoki testify that the most unendurable aspect of autism is the knowledge that he makes other people stressed out and depressed? How could he write a story (entitled “I’m Right Here” and included at the end of the book) boasting characters who display a range of emotions and a plot designed to tweak the tear glands? Like all storytelling mammals, Naoki is anticipating his audience’s emotions and manipulating them. That is empathy. The conclusion is that both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism, its harsh lockdown on self-expression and society’s near-pristine ignorance about what’s happening inside autistic heads.

For me, all the above is transformative, life-enhancing knowledge. When you know that your kid wants to speak with you, when you know that he’s taking in his surroundings every bit as attentively as your nonautistic daughter, whatever the evidence to the contrary, then you can be ten times more patient, willing, understanding and communicative; and ten times better able to help his development. It is no exaggeration to say that The Reason I Jump allowed me to round a corner in our relationship with our son. Naoki Higashida’s writing administered the kick I needed to stop feeling sorry for myself, and start thinking how much tougher life was for my son, and what I could do to make it less tough. Virtuous spirals are as wonderful in special-needs parenting as anywhere else: your expectations for your child are raised; your stamina to get through the rocky patches is strengthened; and your child senses this, and responds. My wife began to work on an informal translation of Naoki’s book into English so that our son’s other carers and tutors could read it, as well as a few friends who also have sons and daughters with autism in our corner of Ireland. But after discovering through Web groups that other expat Japanese mothers of children with autism were frustrated by the lack of a translation into English, we began to wonder if there might not be a much wider audience for Naoki Higashida. This English translation of The Reason I Jump is the result.

The author is not a guru, and if the answers to a few of the questions may seem a little sparse, remember he was only thirteen when he wrote them. Even when he can’t provide a short, straight answer—such as to the question “Why do you like lining up your toys so obsessively?”—what he has to say is still worthwhile. Naoki Higashida has continued to write, keeps a nearly daily blog, has become well known in autism advocacy circles and has been featured regularly in the Japanese Big Issue. He says that he aspires to be a writer, but it’s obvious to me that he already is one—an honest, modest, thoughtful writer, who has won over enormous odds and transported first-hand knowledge from the severely autistic mind into the wider world; a process as taxing for him as, say, the act of carrying water in cupped palms across a bustling Times Square or Piccadilly Circus would be to you or me. The three characters used for the word “autism” in Japanese signify “self,” “shut” and “illness.” My imagination converts these characters into a prisoner locked up and forgotten inside a solitary confinement cell waiting for someone, anyone, to realize he or she is in there. The Reason I Jump knocks out a brick in the
wall. --Ce texte fait référence à l'édition Relié .

Revue de presse

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

The most remarkable book of the year. The book throws a pontoon bridge over the chasm dividing autistic and neuro-typical experience. (Charlotte Moore, Books of the Year 2013 Spectator)

The Reason I Jump reads effortlessly, each page challenging preconceptions that autistic people lack empathy, humour or imagination. (Independent on Sunday)

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)

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

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

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Par Zephora le 15 juillet 2013
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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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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Commentaires client les plus utiles sur Amazon.com (beta)

Amazon.com: HASH(0x94466e34) étoiles sur 5 1.488 commentaires
246 internautes sur 257 ont trouvé ce commentaire utile 
HASH(0x94498aec) 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.
355 internautes sur 423 ont trouvé ce commentaire utile 
HASH(0x94498b40) 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.
154 internautes sur 186 ont trouvé ce commentaire utile 
HASH(0x94498f78) étoiles sur 5 Confusing to one with mild autism - 3 octobre 2013
Par Loyd 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.
79 internautes sur 96 ont trouvé ce commentaire utile 
HASH(0x9449b348) 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.
37 internautes sur 47 ont trouvé ce commentaire utile 
HASH(0x9449b2f4) étoiles sur 5 Disappointed as a fellow autistic person 9 octobre 2013
Par Maranda Russell - Publié sur Amazon.com
Format: Format Kindle
I really wanted to love this book and as a high-functioning autistic, thought I would really relate to it, but much of it I didn't relate to at all. I felt that it honestly might not be completely honest (in that, I'm not sure the autistic child truly wrote it all without ALOT of help or even someone guiding him). Also, I worry that people will read this one book and think they know how all autistics feel and I can tell you right now, that isn't true at all. In fact, as an autistic person myself with the ability to communicate fairly well verbally, I definitely disagreed with some of the sweeping generalizations in the book about why those of us on the spectrum do certain things or act certain ways.
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