The Reason I Jump by Naoki Higashida: Autism from the inside

Naoki Higashida has written a sparkling collection of Q&As, reflections and stories which describes like with autism from a first-hand perspective.

The Reason I Jump
Naoki Higashida
Translated by K A Yoshida and David Mitchell
Sceptre, 192pp, £12.99
 
When we think of autism, we think of solitude – of the child who prefers to play alone, away from the hurly-burly of the rest of the class, or the adult who would rather not join in with everyone else this weekend, thanks all the same. Collectively, we have been trained by our understanding – or lack thereof – to think that leaving autistic people alone is for the best, that it is what they want.
 
In The Reason I Jump, Naoki Higashida shows us how wrong we are. Shows rather than tells, that is, for although Higashida is autistic and was only 13 years old when he produced this book, his words flow smoothly, with no hectoring quality to his tone. His frequent pleas for understanding and patience as he tries to answer such questions as “Why do people with autism talk so loudly and weirdly?” and “Why are your facial expressions so limited?” never cease to humble you as you read.
 
Part question-and-answer text and part short story, The Reason I Jump has been translated into English by the twice Booker-shortlisted author David Mitchell and his wife, K A Yoshida. The couple first came across it in the original Japanese and it offered them a crucial breakthrough in understanding what their autistic son was experiencing. As Mitchell writes in his introduction: “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.” Now, by translating it, they hope to share the insights it provides more widely.
 
Fictional representations of autism-like traits, such as in Mark Haddon’s The Curious Incident of the Dog in the Night-Time and Dustin Hoffman’s Oscar-winning turn in the 1988 film Rain Man, make us think we know what to expect when we encounter the real thing. But as Mitchell explained in a recent piece for the Guardian, the avalanche of articles and books on dealing with autism that he and his wife received from well-meaning friends and family when their son received his diagnosis only emphasised our collective ignorance. Most advice bears little relation to reality. How do you explain that your son has bruises on his head because he likes to bang it on the floor, hard, up to a dozen times a day? A wise therapist advised Mitchell to put a foot between his son’s head and the floor “so the impact is softened” but it took Higashida’s writing to help the frantic parents understand why their son felt compelled to hurt himself in this way.
 
Every page dismantles another preconception about autism. For a start, Higashida writes mainly in the plural – we need your help, we need your understanding – as if he is not alone but part of a great community of silent children around the world. He explains that it’s physically painful for him to hold back his “weird voice” (that loud, thick, overworked diction that autistic people sometimes use) because it feels “as if I’m strangling my own throat”. And the concept of time makes him anxious, because although he can see the hands on the clock move, he can’t feel the passing seconds rushing past him like the landscape does when he runs.
 
At first glance, the book can be read as a manual for autism and it is certainly helpful in that regard. We assume that autism is a disease of the interior – a mysterious malfunction that happens inside the sufferer’s head. Higashida, with what I imagine to be a wry smile on his lips, uses both his answers and his stories to show us yet again how wrong we are. He explains that trying to control his body is “like remote-controlling a faulty robot” and that every aspect of autism that affects his mind has a corollary in his physical existence. If you try, as you read, to link your mind to his as he describes his thoughts, you start to get little hints of what it must be like to have no sensation of where your legs and arms are attached or to have limbs that feel as if they are “a mermaid’s rubbery tail”. It isn’t pleasant.
 
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. As he proves in his answer to the question implied by the book’s title – “Why do you jump?” – Higashida is grasping at something universal about the human mind: “When I’m jumping, it’s as if my feelings are going upwards to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver.”
 
Once you understand how Higashida managed to write this book, you lose your heart to him. It’s a slim little volume, but in order to write a single word he had to select and point to each character on an alphabet grid drawn on paper, while someone sat beside him transcribing the words he formed. His autism is such that dictation was out of the question and computers were too distracting. Every letter was painstakingly chosen and deliberately selected. With all the effort that has gone into putting these words before our eyes, it’s impossible still to think that autistic people prefer their loneliness. Higashida has shown us that they are just waiting for us to have the patience to listen to what they want to say.
Autism has been represented in fiction, but seldom has a first-hand account emerged. Photograph: Getty Images.

Caroline Crampton is assistant editor of the New Statesman. She writes a weekly podcast column.

This article first appeared in the 22 July 2013 issue of the New Statesman, How to make a saint

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A swimming pool and a bleeding toe put my medical competency in doubt

Doctors are used to contending with Google. Sometimes the search engine wins. 

The brutal heatwave affecting southern Europe this summer has become known among locals as “Lucifer”. Having just returned from Italy, I fully understand the nickname. An early excursion caused the beginnings of sunstroke, so we abandoned plans to explore the cultural heritage of the Amalfi region and strayed no further than five metres from the hotel pool for the rest of the week.

The children were delighted, particularly my 12-year-old stepdaughter, Gracie, who proceeded to spend hours at a time playing in the water. Towelling herself after one long session, she noticed something odd.

“What’s happened there?” she asked, holding her foot aloft in front of my face.

I inspected the proffered appendage: on the underside of her big toe was an oblong area of glistening red flesh that looked like a chunk of raw steak.

“Did you injure it?”

She shook her head. “It doesn’t hurt at all.”

I shrugged and said she must have grazed it. She wasn’t convinced, pointing out that she would remember if she had done that. She has great faith in plasters, though, and once it was dressed she forgot all about it. I dismissed it, too, assuming it was one of those things.

By the end of the next day, the pulp on the underside of all of her toes looked the same. As the doctor in the family, I felt under some pressure to come up with an explanation. I made up something about burns from the hot paving slabs around the pool. Gracie didn’t say as much, but her look suggested a dawning scepticism over my claims to hold a medical degree.

The next day, Gracie and her new-found holiday playmate, Eve, abruptly terminated a marathon piggy-in-the-middle session in the pool with Eve’s dad. “Our feet are bleeding,” they announced, somewhat incredulously. Sure enough, bright-red blood was flowing, apparently painlessly, from the bottoms of their big toes.

Doctors are used to contending with Google. Often, what patients discover on the internet causes them undue alarm, and our role is to provide context and reassurance. But not infrequently, people come across information that outstrips our knowledge. On my return from our room with fresh supplies of plasters, my wife looked up from her sun lounger with an air of quiet amusement.

“It’s called ‘pool toe’,” she said, handing me her iPhone. The page she had tracked down described the girls’ situation exactly: friction burns, most commonly seen in children, caused by repetitive hopping about on the abrasive floors of swimming pools. Doctors practising in hot countries must see it all the time. I doubt it presents often to British GPs.

I remained puzzled about the lack of pain. The injuries looked bad, but neither Gracie nor Eve was particularly bothered. Here the internet drew a blank, but I suspect it has to do with the “pruning” of our skin that we’re all familiar with after a soak in the bath. This only occurs over the pulps of our fingers and toes. It was once thought to be caused by water diffusing into skin cells, making them swell, but the truth is far more fascinating.

The wrinkling is an active process, triggered by immersion, in which the blood supply to the pulp regions is switched off, causing the skin there to shrink and pucker. This creates the biological equivalent of tyre treads on our fingers and toes and markedly improves our grip – of great evolutionary advantage when grasping slippery fish in a river, or if trying to maintain balance on slick wet rocks.

The flip side of this is much greater friction, leading to abrasion of the skin through repeated micro-trauma. And the lack of blood flow causes nerves to shut down, depriving us of the pain that would otherwise alert us to the ongoing tissue damage. An adaptation that helped our ancestors hunt in rivers proves considerably less use on a modern summer holiday.

I may not have seen much of the local heritage, but the trip to Italy taught me something new all the same. 

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear