“The Young Teacher”
The greatest gems of wisdom are usually transmitted to us in the form of images. Whether it is science, spiritual thought, or philosophical abstractions, we tend to awaken to a better understanding when we are shown a glimpse of the metaphors that guide the smart ones amongst us.
You never know when you’re going to need a mentor, and when the right one will come along. And sometimes, the best ones don’t even realize they’ve lifted the veil for someone out there.
Such was the case for me when I picked up “The Reason I Jump: The Inner Voice of a Thirteen-year-Old Boy with Autism” by Naoki Higashida. As one of the book’s translators, David Mitchell, writes, there is a “near-pristine ignorance” about how to understand the autism mind. Perhaps this is why the first person account by a young boy reached me so clearly. I like imagery, and so does he. The book is set up as a series of questions that might be posed by non-autistic people, answered by Higashida using a combination of analogies and imaginative narratives. So much of our effort to describe autism is through such word pictures, and it has a greater ring of authenticity if an autistic person draws them.
The translated version was first published in 2013, when A was eight years old, so I read carefully, but it would have been a gross projection to assume that everything Higashida described could be applied to A. The one image that stood out for me, and which has guided me ever since, was one that the author used to explain why he becomes upset so easily over small mistakes:
“Once I’ve made a mistake, the fact of it starts rushing toward me like a tsunami. And then, like trees or houses being destroyed by the tsunami, I get destroyed by the shock. I get swallowed up in the moment, and can’t tell the right response from the wrong response. All I know is that I have to get out of the situation as soon as I can, so I don’t drown. To get away, I’ll do anything. Crying, screaming and throwing things, hitting out even…
Finally, finally, I’ll calm down and come back to myself. Then I see no sign of the tsunami attack–only the wreckage I’ve made. And when I see that, I hate myself. I just hate myself.”
As early as we were in the journey, the tsunami image has stayed with me, and every time A has a meltdown, or rushes into something he shouldn’t, I am reminded to stay the course, and be there when the storm has passed, so that he doesn’t have to look at the aftermath and be filled with self loathing. I am so grateful that such a book existed when A was younger, and my thoughts could be shaped by reading it. The knowledge that autistic people are so highly aware of how much they can stress and upset their caregivers should really evoke our compassion, and guide our responses. That was the takeaway for me back then.
Recently, I have turned to a rereading of this amazing book, and since A has journeyed a little further along in his life, I saw everything with new eyes, and, I confess, I wept all over the library’s copy. *dabs at pages*
I made a really simplistic list while I was reading, of some of the reasons Higashida hints at for possible outbursts, and behaviors that have to be stopped by others, and it turned into such a long list, and resonated so strongly with our family’s experience, that I looked at A with new eyes, full of respect for his coping skills. Here is my list:
Set-pattern conversations where the same words are used repeatedly are easier, but either people don’t stick to what an autistic person understands, or the set words aren’t useful at times of high emotion.
The words being spoken at any given time are the only ones that the autistic person can access, so planning ahead what to say, or thinking on the spot are virtually impossible. The feeling of “drowning in a flood of words” is all too common.
The intended message rarely comes out when an autistic person speaks, so what he says and what he means rarely cohere.
When expected to make eye contact and also listen to words, his sense of sight zones out; managing all the senses at once is a Herculean task.
Being touched by others is not just a sensory violation, but a feeling of being controlled, when he already feels so little control over his own body.
Even far off memories can trigger a meltdown because experiences are not always connected chronologically, but crop up as sudden flashbacks.
When there is a feeling of upset but no way to communicate it to others, the despair has nowhere to go and the senses become more confused.
Since there is so little chance of explaining to people the minutiae of what he is feeling, he often doesn’t react to pain because it’s easier than trying to show it.
Insisting on specific types of clothing is a way of protecting against uncertainty.
The passage of time and the anticipation of what’s happening next are a source of huge anxiety. Visual schedules often increase this obsessive worry.
He worries about whether he is perceiving things in the same way that others do.
He likes to learn, but he knows his attention span is short.
He knows that he shouldn’t obsess over the various stimuli around him, and a lot of times, he appears to be frolicking but is actually aching from the lack of control over his body.
He needs verbal prompts but sometimes people don’t use them so he ends up failing at tasks. …
That’s not even all of it. And certainly the book is not meant to just be a How-To on interpreting autism behaviors. I just happened to read it with a specific lens this time around. I can sense A developing more subtlety of thought, and I want to understand better. Higashida’s independent, defiant teenage voice is both touching and instructive. We aren’t meant to draw universal truths, and his writing was, at the time, indicative of how he wished to present himself. That’s true of A as well, and his little rebellions underscore that growing understanding of wanting to be perceived as his own person, so my rereading of the book made me laugh-cry with recognition.
Whether he is speaking of happy or unpleasant moments, Higashida’s greatest strength, to me, is in drawing that perfect picture, which, while no one could claim that it speaks for all autistic people, illuminates for us bystanders why they may jump, why they may scream, and why they need us even when they seem not to be able to bear our touch, presence, or voices. He moves aside that thick glass panel that seems to exist between us and the autistic loved one, assuring us that we are not passive observers, but needed elements in their mental landscape. That alone is reason enough to reflect on this book. As nonverbal autistic people grow to adolescence, they may not be able to tell us how we fit into their shifting brain pictures, but at least we know that we can stand beside them while the storms and obsessions surge, and we can say “I’m still here,” when they turn to us, hoping they take comfort in our companionship.
I don’t know where other autism parents stand on the issue, or even if there is any consensus, but sometimes I wonder if my parenting is making any impression. Does he need me, or would someone trained for this do better? Is my love enough, or is it a millstone he has to wear on top of everything else? Does my presence make him feel better? Self doubt is my biggest enemy. And here, Higashida’s words have helped me to look forward. He asks us not to give up on kids like him, and to understand that autistic kids are “made stronger just by the fact [we’re] watching.” And he clearly calls out the caregiver tendency to complain about how tough we have it, saying that he already feels useless at many important skills, so hearing and seeing caregiver sadness makes him feel utterly miserable. His words tear at me:
“When you do this, it feels as if you’re denying any value at all that our lives may have–and that saps the spirit we need to soldier on…the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”
As the adults in the equation, we naturally have to draw on sometimes hugely depleted reserves of positivity, and we cannot fake it when we have been on the alert for hours and hours each day, when we feel we see no progress in behavior or life skills, and when we are often alone with our thoughts because we cannot reach the child who cannot be left unattended even for a few minutes, except through the repetitive loops that seem to us to lead nowhere. But if I had to say what Higashida’s book has done for me, I would say this: his insights guided me to some self-exploration of ‘the reason I keep on.’ Knowing that if I don’t give up, it helps A not to give up too–that is the treasure which makes me keep trying. If the idea feels like an abstracted impossibility some days, I don’t care. I hang onto it anyway. I do it for A’s laughter, and because who else would wipe his nose gently after he cries?
Higashida, Naoki. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. Trans. KA Yoshida and David Mitchell. New York: Random House, 2013.