Last week in this space, I discussed my issues with the film The Horse Boy, more specifically the many PhD-level experts in that movie who gloss over the fact that they’re advocating cognitive dissonance for parents of autistic children. This week, partly as parity, I want to give my unconditional love and respect to a book called The Reason I Jump by Naoki Higashida. This won’t come as a surprise to those of you who identified the quote that headers this blog. At some point, I meant to dedicate an entry to Naoki’s astonishing work, and here is that post.
For the uninitiated, Naoki is, or was, a nonverbal 13-year-old Japanese boy diagnosed with autism who wrote a book. When I casually mentioned it to Dar’s speech therapist, her first instinct was to debunk it; she peppered me with questions about Naoki’s authenticity. While it’s true that I’ve never seen Naoki on an American talk show (uh, his disability is made worse by crowds, and he doesn’t speak English, never mind Japanese without help), I believe the book. It was written almost ten years ago; the autism community would have sniffed out a fake by now.
Naoki’s book is like a message in a bottle, a letter from prison, smoke signals from a frontier outpost, beep signals from outer space. It’s talking to us from the great beyond of one of the planets in the Autism Galaxy, a place where every inhabitant is stuck alone on their own world.
Reading Naoki, I “heard” him the way I hear voice-over in films, with that slight extra reverb and echo-chamber effect. But while films and shows tend not to trust actual kids to tell kids’ stories (e.g. Stand By Me and The Wonder Years are told in voice-over by adults pretending to be the lead kid), The Reason I Jump blows the lid off that convention as Naoki demonstrates an extraordinary degree of maturity, poise, love for humanity, and vulnerability. To think about the courage and work and persistence that it must have taken for him to write this…it’s staggering.
Naoki writes most of the book as an extended Q&A, apparently addressing the many curious people who talk to him. Each question is a sentence; his answer always goes on for many paragraphs. For example, one chapter begins “Why do you ask the same questions over and over?” Naoki replies in part: “I imagine a normal person’s memory is arranged continuously, like a line. My memory, however, is more like a pool of dots. I’m always ‘picking up’ these dots – by asking my questions – so I can arrive back at the memory that the dots represent.” Another chapter begins “Why do you take ages to answer questions?” Part of Naoki’s reply is: “The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads…And all the while, we’re being bombarded by yet more questions. I end up thinking, This is just hopeless. It’s as if I’m drowning in a flood of words.”
Sometimes Naoki is utterly poignant and you want to give him a big hug and never let him go. For example:
“Every single time I’m talked down to, I end up feeling utterly miserable – as if I’m being given zero chance of a decent future.”
“You must be thinking: ‘Is he never going to learn?’ We know we’re making you sad and upset, but it’s as if we don’t have any say in it, I’m afraid, and that’s the way it is. But please, whatever you do, don’t give up on us. We need your help.”
“The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely.”
“We really badly want you to understand what’s going on inside our hearts and minds. And basically, my feelings are pretty much the same as yours.”
It’s rather jarring how well Naoki understands his situation, compared to how he still lacks the tools to change it. You might think that if a person could understand, say, their memory as a pool of dots compared to a line, they could turn that memory into a line. But no. Diagnosis does not equal treatment. That’s part of the pain of autism more generally. Naoki’s book brings that horrible inequality into sharp, almost unbearable clarity.
Every day, I get group emails from parents of kids with autism. I often hear: “Well, my kid is actually really smart, but these teachers just don’t realize it.” For them, Naoki’s words must serve as a kind of evidence, as a sort of yardstick: see, this is what may be in there. (Frankly, Naoki is twice as articulate as half the non-autistic 13-year-old boys I’ve ever met.) But I’m going to tell you something that may surprise you: I don’t know that anyone like Naoki is living inside little Dar. I don’t see all this evidence of his supposed genius locked up in there. Sure, maybe it’s there. But I don’t love Naoki because it seems reasonable that Dar has, or will have, that kind of brilliant inner voice waiting to get out. I love Naoki for who he is, and for the way he represents some kind of possible decipherable speech that Dar could maybe, one day, slightly emulate.
I think my big takeaway is something like David Mitchell’s. He’s an author who wrote the foreword for the English-language edition. He marvels at Naoki’s empathy. He writes, “During the 24/7 grind of being a carer, it’s all too easy to forget the fact that the person you’re doing this for is, and is obliged to be, more resourceful than you in many respects. As the months turn into years ‘forgetting’ can become ‘disbelieving’ and this lack of faith makes both the carer and the cared-for vulnerable to negativities. Naoki Higashida’s gift is to restore faith.” Yes.
To conclude this post, Mitchell talks about two corners: one, a corner where a person with the communication problems of severe autism tends to wind up, and people see him and think oh, he must want that, when Naoki makes it abundantly clear that he doesn’t; and two, as Mitchell puts it, “It is no exaggeration to say that The Reason I Jump allowed me to round a corner in our relationship with our son…[it] administered the kick I needed to stop feeling sorry for myself, and start thinking how much tougher life was for my son, and what I could do to make it less tough.” Yes. That. A thousand times that.