Why do you flap your hands in front of your face? by Julia Jones
I am one of many people currently reading The Reason I Jump: one boy's voice from the silence of autism by Naoki Higashida, translated by novelist David Mitchell and his wife Keiko Yoshida. It's a unique and beautiful piece of writing from a severely autistic thirteen year old who still (he's now aged sixteen) cannot reliably control his body or hold a spoken conversation.
David Mitchell wrote an article in the Guardian explaining his personal involvement (his son is autistic) and the book was also read on Radio 4. When I mention it to friends they say, “oh yes, I think I heard that” or “I know the one you mean”. The hardback edition stands at #2 in the Amazon top 100 books and is reprinting: the kindle edition is unobtrusively available at #103. I am already thinking of friends to whom I want to give The Reason I Jump. Not because they are parents or teachers of autistic children but because it speaks about the imperfect relationship between body and mind and the importance of communication in our understanding of what it mean to be human.
This book is eloquent – yet Naoki Higashida's situation is that he cannot reliably communicate. He explains how his words “flutter away” from him; how the sounds which come out of his mouth often bear no relation to what he is trying to express. “When there's a gap between what I'm thinking and what I'm saying because the words that come out of my mouth are the only ones I can access at that time.” He knows that his voice often sounds “weird” – too loud, too soft, bizarrely toned. “When my weird voice gets triggered , it's almost impossible to hold it back and when I try it actually hurts, almost as if I'm strangling my own throat.” He conveys his despair “I used to wonder why Non-Speaking Me had ever been born.” Page after page bring the tears prickling to my eyes.
|Illustrated by Kai and Sunny|
For David Mitchell and Keiko Yoshida, the parents of an autistic child, the discovery of Naoki's book in its Japanese edition was life-changing. “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.”
I was drawn to The Reason I Jump because my stories include imagined versions of people who find “normal” life especially difficult – Skye in the Strong Winds trilogy, Angel and Peter in my next (untitled) book. I was surprised to notice how relevant some of Naoki's explanations are to my mother's current situation as Alzheimer's makes it harder for her to say exactly what she means. I remember what a difference it made when I found the particular volume (Contented Dementia by Oliver James) that helped me understand that although mum's access to words and memories was becoming more and more frustratingly difficult, her feelings were unaffected.
One of the biggest misunderstandings you have about us is that our feelings aren't as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we're childish on the inside too. But of course we experience the same emotions as you do. And, because people with autism aren't skilful talkers, we may in fact be even more sensitive than you are.
Alzheimer's is just one of several different words we could substitute for autism here, I think.
The Reason I Jump is structured to offer answers to questions: “Why don't you make eye contact when you're talking?” “Why do you make a huge fuss over tiny mistakes? “Why do you memorise train timetables and calendars?” “Why do you flap your fingers and hands in front of your face?”
Here's Naoki's answer to that last one:
Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But 'unfiltered' direct light sort of 'needles' its way into the eyeballs of people with autism in sharp straight lines so we see too many points of light. This actually makes our eyes hurt.
That said we couldn't get by without light. Light wipes away our tears and when we're bathed in light, we're happy. Perhaps we just love how its particles pour down on us. Light particles somehow console us. I admit this is something I can't quite explain using logic.
No, Naoki, you can't explain it. You're a thirteen-year-old spelling out your thoughts letter by letter, pointing at an alphabet grid that your mother made for you. You can't give us a clearcut answer with a uniformly-replicable solution but you can express your sensations – memorably. You also create fairy stories and fables; you help us understand your feelings of friendship with nature. “However often we're ignored and pushed away by other people nature will always give us a good big hug here inside our hearts.”
As David Mitchell says in his introduction, you are a writer, Naoki Higashida, “an honest, thoughtful, modest writer.”