British novelist David Mitchell believes Naoki Higashida's 2012 book, The Reason I Jump, written when he was 13, has "influenced the narrative of autism at least as much as any other book I know."
He says that for two reasons. First, because it was written by a Japanese boy with severe, non-verbal autism. Second, because it was – and still is – something of a one-off in the autism literary world.
"Books are often written by autistic people looking back – people who are adults or who have a faculty for spoken language," said Mitchell, whose novel Cloud Atlas was shortlisted for a Man Booker Prize and made into a Hollywood film starring Tom Hanks and Halle Berry. "For most intents and purposes, Naoki can't speak," added Mitchell, whose 11-year-old son is severe, non-verbal autistic. "And yet Naoki's very eloquent on the page, which makes him very unusual."
The Reason I Jump was an international success and has been translated into 34 languages. Now Higashida's second book, Fall Down 7 Times Get Up 8, has hit shelves, and Mitchell – who wrote the introduction and did the English translation with his wife, KA Yoshida – hopes it will strike the same chord, giving voice to those on the spectrum who are rarely heard and helping parents such as him better understand why their children do and say the things they do.
"People with non-verbal autism do experience emotions. They do have imaginations. And they do have a theory of mind. This message is clear in the second book, which is a plea not to mistake communicative impairment for cognitive impairment," Mitchell said. "To assume beyond the speechlessness of autism there lies nothing."
Fall Down 7 Times Get Up 8 is a compilation of short, powerful chapters interspersed with poems and a short story called Journey, which Higashida composed by "texticating" – a word Mitchell made up to explain how Higashida points to letters on a grid, then has a helper transcribe the resulting sentences. "A few texticaters have published, but you could count them on the fingers of a single hand," Mitchell said on the phone from Chicago, where he's taking a break from a new novel. (As a non-verbal autistic person, Higashida generally cannot give interviews.)
Toronto parent Julie Green has an eight-year-old autistic son named Jackson. She read The Reason I Jump five years ago and was especially intrigued by Higashida's chapter on meltdowns – the shame, frustration and sadness the young boy felt for himself and his caregivers. "He compares it to being in a tsunami," Green said. "Jackson is verbal, but he still can't tell me why he has meltdowns and how he's feeling.
"He always says he doesn't know. He just doesn't have a way to express it. Autism, generally, is an inabilitiy to communicate. Higashida's words said to me: 'Stay with your son. Don't criticize him. Be patient.'"
Carly Harnadek, a mom of five – including two autistic sons, 12 and four – has been to countless doctors, therapists and specialists. They help, she says, but books by autistic authors – adults such as Temple Grandin, Daniel Tammet and Toronto's Carly Fleischman, a 22-year-old with severe, non-verbal autism who co-authored Carly's Voice with her father in 2012 – give her the most peace of mind.
"The books are a great comfort to know there is always hope. And not to just look at your child from the outside, because the inside can be completely different," said Harnadek, whose family is featured in the documentary Beyond the Spectrum: A Family's Year Confronting Autism, which airs Oct. 18 on TVO and in the spring of 2018 on CBC.
Mitchell, who lives in Ireland, says Higashida's writing has influenced how he and his wife bring up their own son. "We talk to him in more adult language. I feel, looking back, I was unwittingly condescending. As for behaviours, we've just increased our expectations. If he's left something on the ground, we say, 'No, you can pick it up.' And he can and he will. We no longer constantly make allowances for him, which probably wasn't doing him much good."
There are skeptics who question whether Higashida – given the severity of his autism – could have penned such layered, eloquent prose. Mitchell says he can – and did. "I have no reason to lie, and believe me, I've met my fair share of snake oil salesmen out there. I've even given money to a few. All parents are so desperate to find ways to help our kids.
"But I've met Naoki three or four times. I've seen him work. No one is holding his hands, and you can watch these 'tweetable video-ettes' on YouTube."
As an insider who lives with autism all day, Mitchell says the last thing he wants to do sometimes is pick up a book on autism. "They can be really depressing," he said, "but Naoki's are hopeful because they show you never know what talents may lie behind the speechlessness."
They also advocate for taking time to live outside the autism box. "I've realized the more you stay insulated, the more his talents are likely to stay hidden. So we recently took [my son] on a vacation to London. I was dreading the queuing, the waiting and standing still. But he handled it well.
"We get priority boarding when we fly with him, but there was still a queue. A couple of businessmen insisted we go ahead of them, and I almost teared up with gratitude. The world is a slightly more friendly autism place. We still have a long way to go, but the dagger stares have become fewer and scarcer. I guess, maybe, I care less as well."
Fall Down 7 Times Get Up 8
My Dream Me
A long time ago I used to dream that I was a neurotypical child. In these dreams I was forever laughing, chatting away and swapping jokes with my friends and family. My Dream Me forgot all about My Real Me here in the waking world. Then I would wake up and return to myself, but I'd be clueless about where I was or what on earth I was doing in this place. When I finally realized I'd been dreaming, I'd well up and tears would spill down my face.
Dreams can be cruel. Things unthinkable in reality can easily come to pass. Are there not moments when your eyes are open but you wonder if you're waking or dreaming? To me, it's as if I'm standing at the fork in a road of a double life, seized by inertia. But no matter how beautiful the dream is, I sooner or later get drawn back to reality. I rub my eyes and get up from my futon. Strangely, perhaps, even though I envy My Dream Me, these days it's a bit of a relief to get back to who I really am. I now know that My Dream Me is also a Fake Me, I guess. I might have longed once to become that neurotypical version of myself, but really it was only in the way a child would want to be the hero in a film. Dreams might let us see things afresh, but they are illusions. This world is my world. There is no other.
The Gift of Choice
It's vital, I believe, that those of us who live with autism are permitted to exercise choice independently. Even after I became able to choose items on my own, my mother would, without fail, check with me: "Look, there's this one, this one and this one – which would you like?" She would ask me to point to the one I wanted and confirm my choice yet again by having me spell it out on her palm or my alphabet grid. Mom's asking me to state my choice twice cost her extra effort, but for me it mattered very much. My outer expressions don't always correspond to my inner intentions, so it was really important to practice expressing my wishes correctly. In fact, it was thanks to these opportunities my mother gave me to choose between objects that I recently worked out why I sometimes select an option at odds with the one I really intended to choose: it can be because an aspect of the object seizes my attention, or a leading phrase in the question is swaying my choice, or I'm being influenced by a question-and-answer pattern that is "pre-fixed" in my head.
Whenever I have to select something, my mind kind of goes blank. When I'm instructed to "pick something," the urgency of having to do so throws me into a tailspin. If I'm told, "Come on, choose one of them!" then the only thing that matters is that I have to choose one, right now. I guess for neurotypical people there is pleasure to be found in making a choice, but this is not a luxury that I can enjoy. However, since I've learned to communicate my thoughts and wishes to some degree by writing on palms or via my grid, I am at least able to reset my decision if I make a wrong choice. I'm also better able to consider why I went for the option I didn't want, work out which one I should have chosen, and let people around me know which option is the right one for me, after all.
To those of you who live, work or deal with people who have nonverbal autism, I recommend switching the order of the items on offer and sidestepping the "triggers" of fixed responses. This will help you ascertain which option the person with autism genuinely wants. It's also crucial that people who work with us steer clear of bias and preconceived notions about our choices and don't fall into the trap of thinking, this one here is the one he needs! Remember that the very same person can vary his or her choice depending on how they feel that day, and that our preferences can change with the seasons, or as we just get older.
Finally, please be mindful that, with the best will in the world, while you are intending to give us a free choice, you might inadvertently be swaying us one way or the other.
Excerpted from Fall Down 7 Times Get Up 8 by Naoki Higashida and translated by KA Yoshida and David Mitchell. Copyright in the original Japanese text © 2017 Naoki Higashida and David Mitchell. English translation copyright © 2017 KA Yoshida and David Mitchell. Published by Alfred A. Knopf Canada, a division of Penguin Random House Canada Limited. Reproduced by arrangement with the publisher. All rights reserved.