Courtesy: Random House
Tuesday, February 25, 2014

Standing in His Shoes

Review: The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism

By: Temple Grandin, Ph.D.

In Temple Grandin's review of The Reason I Jump by Naoki Higashida, she relates her own experience living with and studying autism to better understand the mind of a remarkable 13-year-old Japanese boy with severe autism. Structured as a series of questions that a nonautistic person might ask an autistic one, Naoki's book is translated by David Mitchell (author of the novel Cloud Atlas) and his wife, Keiko Yoshida, and contains an impassioned introduction in which Mitchell discusses his experience with his own autistic child.

When I received a review copy of The Reason I Jump from the publisher, I set this highly insightful book aside because both the foreword and the cover letter from the editor failed to provide a sufficient description of Naoki Higashida's ability to communicate fully and independently. When I was later asked to review this book, I was confident that Naoki, a 13-year-old nonverbal child with autism, was not using the controversial method of facilitated communication, in which a person supports the wrist of the nonverbal person with autism. When this method is used, the facilitator is often the true author. Naoki's book belongs to the other class of writings: those that come from nonverbal individuals with autism who can communicate fully independently with no wrist support.

Some of Naoki's experiences with sensory issues are similar to other accounts from nonverbal individuals, such as Tito Rajarshi Mukhopadhyay's How Can I Talk If My Lips Don't Move?: Inside My Autistic Mind (2008) and Arthur and Carly Fleischmann's Carly's Voice: Breaking Through Autism (2012). Tito, Carly, and Naoki all have a kind of "locked-in" syndrome, whereby an intelligent mind is trapped inside a body that has difficulty controlling movements. Tremendous effort is required to pay attention. I had an opportunity to visit Tito in a quiet medical library. When he arrived, he flapped and ran around. Deliberately selecting an image that was totally novel for him to comment on, I showed him a picture of an astronaut on a horse from an old Scientific American. He quickly typed "Apollo 11 on a horse." Tito has to work really hard to maintain attention, and he could answer only three short questions before he needed a rest. In their books, Tito and Carly describe problems with maintaining attention and screening out a bombardment of sensory stimuli around them. When I met Tito, he typed his answers very quickly and then jumped up and flapped his hands.

The title of Naoki's book is very appropriate. He explains why he needs movement in order to determine where his body is located in space: "The reason is that imitating movement is difficult for people with autism because we don't know our own body parts well." Later, he writes, "When I am jumping, I can feel my body parts really well." He goes on to write, "When I am not moving, it feels like my soul is detaching from my body." Tito's book has similar descriptions of a thinking self that is separate from the actions of his body. Movements such as spinning provide calm and bliss. Naoki writes, "Just watching spinning things fills me with everlasting bliss." He also explains how flicking his fingers in front of his eyes provides light in a pleasant, filtered manner. I can relate to this. When I was little, I spun things and dribbled sand through my hands. It was like taking a drug. If my teachers and mother had let me spin things all day, I never would have developed because my brain would have been shut off from the world. To calm down I was allowed to spin things for an hour after lunch, but at other times spinning was not allowed. A child with more severe sensory issues than mine may need more rest periods in between teaching periods.

Naoki is very clear that people with autism want to be social. He values the company of other people. In an early chapter of my book, Thinking in Pictures: My Life with Autism (Grandin 1995), I hypothesized that autism may be on an emotional cognitive continuum. People who are nonverbal or have great sensory problems may be more socially and emotionally "normal" than are fully verbal individuals with high-functioning autism or Asperger's syndrome. The works of Tito, Carly, and Naoki support that hypothesis. Carly had normal teenage girl interests locked in a body she had difficulty controlling.

There are some similarities in the way Naoki searches his database for memories and my visual thinking. He explains why he repeats questions: "Firing the question back is a way of sifting through our memories to pick up clues about what the question was asking. We understand the question okay but can't answer it until we fish the right memory pictures in our heads." It seems like his memory is a less organized version of how I search for visual memories. The difference is that I have great control over those associations. I can consciously "search" my visual image database by using keywords, just as Google Images does. Writes Noaki, "but in the case of people with autism, memories are not stored in a clear order." Both Naoki and I have problems with remembering long sequences. His problems are more severe than mine. Other similarities between us include the fear of certain noises and the tendency to look at the details of an object first before seeing the whole.

Research shows that autism is a disorder of the brain's white-matter connections, which provide what I call interoffice communications between the brain's parts. Based on autobiographies of both fully verbal and nonverbal people, it appears that in nonverbal people, systems that integrate sensory information are partly disconnected. A person with nonverbal autism may be working with a condition very different from that of a fully verbal "Asperger's" type who is socially awkward. On the nonverbal end of the spectrum, autism may be more of a disorder of integration of sensory and motor systems, while on the fully verbal end, autism may mean a lack of brain connections involved in social relatedness. My old continuum in my chapter "How People with Autism Think" may be right. Nonverbal individuals may have a more normal social-emotional brain locked in a body that he or she have difficulty controlling, while their visual and auditory systems provide distorted sensory input.

I wish The Reason I Jump included more documentation on Naoki's ability to communicate independently. It should have included descriptions of how he was taught, in either the foreword or the afterword. But the book is an important addition to autobiographical accounts from nonverbal individuals with autism. Everybody who is working with nonverbal individuals with autism should read it.

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Scientific Advisory Board
Joseph T. Coyle, M.D., Harvard Medical School
Kay Redfield Jamison, Ph.D., The Johns Hopkins University School of Medicine
Pierre J. Magistretti, M.D., Ph.D., University of Lausanne Medical School and Hospital
Robert Malenka, M.D., Ph.D., Stanford University School of Medicine
Bruce S. McEwen, Ph.D., The Rockefeller University
Donald Price, M.D., The Johns Hopkins University School of Medicine

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