So, we’ve spent the week going up the Hay Festival and we saw a couple of talks about autism. The first was by David Mitchell (Cloud Atlas not comedian!). He has a boy with non-verbal autism and a Japanese wife. These two facts aren’t random – they lead him and his wife to translate the Reason I Jump by Naoki Higashida.
It is a ground-breaking book because Naoki has non-verbal autism but uses a cardboard letter board (both our Western alphabet and Japanese characters) to communicate. He can use a computer but finds it distracting – actually most writers probably agree with this statement! When he was thirteen, he wrote this book. It’s very short (and was painstaking to write) and takes the form of around 80 questions and answers, together with a couple of short stories.
I admit that I got the book out of curiosity. Being a father to boys with autism (Asperger’s Syndrome) I look to learn what I can about the condition. So, I picked up this book in a scientific frame of mind. But what came across was incredibly moving. I felt I’ve spent so much time in the world of diagnoses and school departments and Three Letter Acronyms that I lost sight of the human condition.
Naoki explodes a lot of myths about autism. The traditional view is that children with autism are lacking in empathy and prefer to spend their time alone. But Naoki feels pain that he is so much trouble for his parents. He wishes he could communicate better, that his memory would function like Neurotypicals, that he could control his body and not flap and stim. And he recognises the problems this causes for those around him. Often he doesn’t want to do the same repetitive things but doesn’t seem to able to choose something else to do.
It acted as a reboot for me in looking at my own boys. I’m lucky that they can talk so I’ve read bits of the book to them and got their feedback. It seems that while it’s one child’s point of view from the other side of the world, what he says does apply. And it’s helped me change my outlook. I now see my children as less naughty, less a collection of symptoms and more as confused and scared people who are trying their best.
So, for me this was a world-changing book. I’m guess it’s going to be one of those books that I keep until it falls apart and I need another copy.