Many times I have wished to be able to read the mind of my 10-year-old, minimally verbal, autistic son, and so I am squarely in the center of the target audience for "The Reason I Jump" by Naoki Higashida (translated by KA Yoshida and David Mitchell).
Random House ($22).
The book, published in Japan in 2007, was written by Naoki when he was 13 and nonverbal.
As a skeptic by nature, I did not have high hopes for the book, not because people with autism do not have insight, originality and empathy, but because when aides, parents and therapists have a literal hand in the communication process, it is easy to put words in someone's mouth.
With Naoki's words traveling across not only the autism-barrier, but also a language barrier -- even with the help of Mr. Mitchell, author of "Cloud Atlas" and another autism parent who has, no doubt, spent countless hours struggling to understand his own child's perspective -- what were the odds of hearing Naoki's voice through all those ﬁlters?
It is inevitable that some things were lost and gained in Mr. Mitchell's translation, and yet the book rings true. Naoki's writing is simple and honest, sometimes containing bursts of poetry and more often, poignant bursts of despair. More than anything, the frequent expressions of profound sadness convinced me that this book is not the projection of the hopes of a well-meaning parent or teacher.
The core of the book is structured as a series of brief answers to questions that are posed to him. Naoki's responses are brief accounts of his experiences and his emotional responses to the situations. In answer to several questions about communication, Naoki relates an arduous process of formulating a spoken sentence, searching his mind for a "memory picture" of a similar situation looking through what he said at the time for a usable phrase.
At other times he uses words that are available because he uses them often or because "they made a lasting impression on me at some point in the past." It follows that he often gives answers that don't make sense and may even contradict his meaning.
And while his ﬁckle and scattered memories may not be available when he needs them, they sometimes come unbidden in the form of a ﬂashback. "I know I have lots of pleasant memories, but my ﬂashback memories are always bad ones, and from out of the blue I get incredibly distressed, [and] burst into tears." As a parent, I was especially interested in the question: "Why do you do things you shouldn't when you've been told a million times not to?"
In answer to this and similar questions, Naoki describes the experience as a compulsion. Although he understands the rule, his mind is always "sending me off on little missions." If he tries to resist, he has to ﬁght a "sense of horror." On the other hand, if he completes the "mission," he feels "a sort of electrical buzz in my brain, which is very pleasant. No other sensation is quite the same."
Still, these behaviors bother him because he hates being in trouble all the time. Interestingly, he doesn't agree with the ubiquitous theory that physical sensations are stronger or different for people with autism and that this causes much of their distress. Instead he says it's the other way around -- emotional "despair" is at the root of his physical reactions.
Here, as in other places, Naoki tells us we are barking up the wrong tree by treating emotional needs as sensory needs, compulsive behavior as willfulness, a nonsensical answer for a lack of understanding. Subtle shifts in these perceptions can make a game-changing difference in our relationships with people like Naoki.
The ﬁnal section of the book is a parable in which the ghost of a boy named Shun struggles desperately to communicate with his mother after dying in a sudden accident. She is unable to see or hear him, even leaving him alone in the house to go out and search for him. Reluctantly, he separates from her and goes to heaven, but after a year he decides that he really wants to comfort his mother more than anything. He makes a deal with God to return as another child, agreeing to extinguish his own identity and memory leaving behind only a light snow fall formed from his tears, "God's proof that a boy named Shun had once lived in this world."
There is a common metaphor in the autism community of the child lost or stolen by autism, and a number of cottage industries that promise to ﬁnd or "recover" your stolen child. I dare anyone to use that metaphor again after reading this parable. The title? "I'm Right Here." I cringed when Shun decided to change himself completely in order to reach his mother. Fortunately, Naoki has made another choice and has begun to change the rest of us instead.
Remarkably, in this small book Naoki Higashida has written us a new lens through which we can see the child beside us.
Ruth Quint is a writer living in the North Hills.