Tuesday, 14 March 2017

Reading Challenge: A Book by or About Someone who has a Disability

The Reason I Jump: One Boy's Voice from the Silence of Autism

Looking to find out more about autism in a straightforward and easy to read way? I would recommend this book. Written by the severely autistic Higashida when he was 13, the book sets out and answers nearly 60 questions relating to autism. David Mitchell (Cloud Atlas author, not comedian) has a son with autism and he found this book a very helpful resource on the subject, and he and his wife worked on translating the book into English. 

I had a vague concept of autism before I read this book. A friend of mine works for Autism Anglia and, like the majority of people, I know people who have children on the autistic spectrum. I've seen Mercury Rising and Rain Man, and read The Curious Incident of the Dog in the Night Time. The Reason I Jump is my first non-fiction foray into the topic.

When I said at the top of this post that Higashida wrote this book, he didn't sit down with a pen and paper or a laptop. He didn't narrate the answers for someone else to type up - spoken communication is all but impossible for him. He learned over time to spell out words directly onto an alphabet grid by pointing to the letters which someone else then transcribed. This is the world that he shows you. A world where things that many take for granted - speech, writing - are beyond him. Not only this but his body is also often an alien thing, something he can't control or direct. The pathways to his brain work in ways he has great difficulty regulating.

The preface of the book begins:
When I was small, I didn't even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem.

He is very aware of how far from the established 'norm' he is. Certain themes and ideas are returned to repeatedly through his answers. The feeling of being shut in; of being isolated. Desperation to do the right thing and please those around you while knowing you just can't direct your body and mind to do it. There is an idea that autistic people have little feeling but this book disproves that. I felt so sad reading some of the answers. You can try to imagine what it is to live with the level of autism but I don't think it's possible to take in even a fraction of its implications.

Naoki Higashida

People with autism have no freedom. The reason is that we are a different kind of human, born with primeval senses. We are outside the normal flow of time, we can't express ourselves, and our bodies are hurtling us through life.

One of the questions is the book is: Why can you never stay still? In his answer he says that when he isn't moving it feels as if his soul is detaching from his body and he gets so scared he can't stay still. What a horrid sensation that must be?

Don't think all this book is sad though. Higashida recognises that in spite of the challenges of autism it also brings an ability to be aware of beauty in the world that those without autism miss.

Would I recommend The Reason I Jump? Definitely! I'd recommend it to those who know next to nothing about autism; to siblings of autistic children who might need that extra help in understanding how different their brother or sister's life is; to relatives and friends of parents who have autistic children. This book isn't a to do list with ideas on treatments. It's a tool for building empathy, and through the honest voice of Naoki Higashida it accomplishes that.

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