Young-adult book about living with autism
Those of us who love people who have autism have always known they have more going on inside—in their hearts, minds, and spirits—than they may be able to share with those of us who need sentences and words to comprehend others.
As computers have become ubiquitous, more people have access to another form of communication. Some people with autism, such as Larry Bissonnette, featured in the film Wretches & Jabberers, have learned to type through facilitated communication, where someone sits beside them and offers a counterpressure of touch to help them persevere and type what they want to say. I recently met Larry and his movie partner, Tracy Thresher, and witnessed their deep humor, clear insights, and real affection for each other. Bissonnette spent most of his life in an institution, where he was considered unteachable and “retarded” beyond hope.
In the film, Bissonnette and Thresher are joined by more and more people with autism who use typing, facilitated communication, or alphabet boards to tell the world who they are, what they know and think, and what they hope and dream of.
One of the more popular writers they meet is a teenager from Japan, Naoki Higashida, who learned to write using an alphabet board. (He points to one letter at a time to spell each word.) In his book, The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (Random House, 2013), he uses a question-and-answer format with short fiction stories sprinkled throughout.
Higashida and his translators (who are parents of a young boy with autism) have given readers an incredible window into what autism is like from the inside—and that is a precious and beautiful thing. Higashida gives words to some of the puzzling behavior of autism. He answers his own questions about why he likes spinning, flapping, repetition; familiar things; and, most of all, nature: “But to us people with special needs, nature is as important as our own lives. When we look at nature, we receive sort of permission to be alive in this world, and our entire bodies get recharged.”
Just like everyone else, Higashida wants to be understood, valued, and loved. For such a young person (he was 13 when he wrote the book), he is poignantly insightful. He tells us he knows his behavior and mannerisms are confusing to his family, schoolmates, and those in his community. And contrary to the stereotype that people with autism are incapable of empathy, Higashida shows us the pain empathy can bring: “The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”
This young man challenges not only our assumptions about people with differences but also our strategies for supporting people with autism. He implores us to keep trying to reach our loved ones, to not give up, to keep teaching and reteaching. In one response, he writes he does not like visual schedules because they are subject to change, and when he sees a plan, he is bound to that plan and cannot handle any change to it, however minor. “We get flustered and panicky,” he writes.
Readers of all ages may find Higashida’s short essays inconsistent with our beliefs about autism and other disabilities. His new voice, free from the constraints of the challenges of autism, is such a delightful reminder that although we may share this planet with others, we often live in very different worlds.
Photo credit: Shutterstock.com
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
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