Sunday, November 17, 2013

On Autism and a Book Review: The Reason I Jump

I have a secret to admit.

I am a discriminatory person.

I don't do well with people with special needs.

One of my best friends is a special education teacher, and I don't know how she does it. The stories she tells me about her work... It takes a certain kind of wonderful person to be a special education teacher, and I definitely am not one of those people.

My husband and I have decided that if we find through in utero testing any disabilities in our future children, we will terminate the pregnancy. Having a special needs child is a stressful situation that would put a strain on our marriage we know we wouldn't be able to handle.

But autism is different. It is not detected in utero, and is rarely even detected until after one year of age. Believe me, I understand the hype. If I had a healthy, lovable, regularly developing baby for one year that suddenly seemed to regress and turn into something I hadn't known my child to be, as some anecdotes suggest, I'd look for a cause, too, and the vaccine I just recently gave him might look like a pretty easy excuse. But the science just isn't there.

There are plenty of sources I could choose to link to here. Let's go with a recent National Geographic article that's easy to read and sums up the situation pretty nicely, a CDC article saying that there's nothing to worry about, a CDC faq, and, for good measure, a Skeptical Raptor post that perhaps conservatives wouldn't accept as legit but links to many important studies and gives valid reasoning for why myths are incorrect.

So. The science isn't there. Let's move on, shall we? We know where autism doesn't come from, and we know that we don't yet know where it does come from.  Causality aside, what about dealing with already existing autism?

No matter how many times I tell it not to, my brain discriminates, specifically, against those that seem to have the incapacity to comprehend the world around them and social order as we, as a society, have come to create. People who can't seem to understand what is going on around them or make sense of anything. People who act without reason against societal norms.

Can they think logically? Do they even have thoughts? Are they even self-aware? "No," my brain tells me, "obviously they can't. And I can't handle people without intelligence." And for the most part, I left it at that. I put it out of my head as much as possible, because it's so difficult to think about.

But when Jon Stewart had David Mitchell on The Daily Show to speak about translating the book, I listened. I was struck by how sincerely Jon recommended the book. It seemed as though he did not have enough words to praise it as much as he wanted to. "The Reason I Jump is one of the most remarkable books I think I've ever read. It's truly moving, eye-opening, incredibly vivid... It is the most illuminating book I think I've ever read on the syndrome... I don't normally urge you," he told his audience. "The Reason I Jump is on the bookshelves now. Please. If you get a chance, please pick it up. It is remarkable." With that kind of authenticity, I could hardly say no. I swallowed my pride and went to the bookstore.

The Reason I Jump is a series of question and answers from then-13-year-old Naoki Higashida. The questioner asks things that anyone observing an autistic individual would want to know. For instance, "Why do you speak in that peculiar way?" "Why do you echo questions back at the asker?" "Why don't you make eye contact when you're talking?" "When you're on one of your highs, what's going through your mind?" "Why do you flap your fingers and hands in front of your face?"

And Naoki answers the questions, all of them, with sincerity and honesty. And it's abundantly clear that he is way more self-aware than I ever would have given him credit for. He can articulate most of the reasons why he does the things that he does, and in the few instances that he can't, he can even articulate that he doesn't have the exact reasoning, it's just pleasant to him in some way. Furthermore, he has the comprehension to acknowledge both what's going on around him and what other people must be feeling because of him.

Naoki is at no loss for intelligence, but he feels as though he is trapped within a body that he cannot control, one that doesn't follow the directions his brain gives.

And realizing this, truly, was a redefining moment for me.

The most remarkable question for me was 39, Why do you like being in the water? Here's the response Naoki gives:

We just want to go back. To the distant, distant past. To a primeval era, in fact, before human beings even existed. All people with autism feel the same about this one, I reckon. Aquatic life-forms came into existence and evolved, but why did they then have to emerge onto dry land, and turn into human beings who chose to lead lives ruled by time? These are real mysteries to me. 
In the water it's so quiet and I'm so free and happy there. Nobody hassles us in the water, and it's as if we've got all the time in the world. Whether we stay in one place or whether we're swimming about, when we're in the water we can really be at one with the pulse of time. Outside of the water there's always too much stimulation for our eyes and our ears, and it's impossible for us to guess how long one second is or how long an hour takes. 
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. If only we could go back to that distant, distant, watery past--then we'd all be able to live as contentedly and as freely as you lot!

Deep, deep, powerful stuff, man. Naoki Higashida, this 13-year-old Japanese autistic boy who screams, doesn't speak or look anyone in the eye, who runs away from home and has a panic attack when he spills a drop of milk from the pitcher, is an intellectual. Is a creative author who has a wonderful sense of language and a powerful sense of empathy, particularly for those he loves. He's just trapped inside of a body that can't express it in a way the rest of us are familiar with.

It's still quite hard to think about, but Naoki mentioned frequently how just having patience was helpful. And that's all we can try to do with all children, I suppose. *sigh*

The Reason I Jump can be purchased from Amazon here. (I am not affiliated and am no way compensated from sales.) I couldn't find anything else from him translated, but if you want a screwy half-intelligible Google translation of his blog, it can be found here. He apparently has a new book that just came out in Japan.

A few months ago, my special education teacher friend posted a video of Carly Fleischmann, a teenage autistic girl that communicates with a computer. Her story is similar to Naoki's, but she's American, so if you want to learn more, she might be the better bet. She keeps a website, a Facebook, and a Twitter.