Although the numbers are at epidemic levels (in the United States, it is estimated to affect 1 in 68 children and 1 in 42 boys),1 autism remains a singular experience—as unique as each individual. Reaching a formal diagnosis is often a complex task. According to the Autism Society, it typically involves a team of doctors and specialists. They must make sense of what at first glance can appear as an intellectual disability, a sensory integration disorder, a learning challenge, giftedness, or simply problems with hearing or vision.2 Though the diagnosis of autism suggests commonality, each case blends quirks, stereotypies, and triggers, proving the colloquialism, “If you have met one person with autism, you have met one person with autism.”
Unraveling an autism diagnosis is a raw, rigorous, and often grueling experience. As a parent of a child on the spectrum, I know what it feels like to muster my last ounce of patience during a public tantrum. My brain literally hurts when I parent against my natural instincts or feel judged, marginalized, and abandoned because a simple social interaction eludes my child. And yet as parents and caregivers we stay the path—committed to unlocking the elusive potential in our children so that they can be happy, live with meaning, and contribute to our families and communities.
Our bookshelves, real and virtual, are lined with books about autism. In addition to the clinical medical volume (Diagnostics and Statistical Manual of Mental Disorders, aka the DSM), there are parental memoirs (often but not always by a celebrity such as Rodney Peete, Curt and Shonda Schilling, Jenny McCarthy, Elaine Hall); scientific accounts (World of Autism: Across the Spectrum of Neurological Difference, edited by Joyce Davidson and Michael Orsini); and narratives that read like literary fiction (Andrew Solomon’s Far From the Tree, for example, or Temple Grandin and Richard Panek’s The Autistic Brain).
The Reason I Jump is written by Naoki Higashida, a 13-year-old nonverbal autistic boy—the first nonverbal autistic teenager to write a book. Naoki sheds light on the inner life of the autistic person from the book’s first words, “When I was small, I didn’t even know that I was a kid with special needs.” He goes on to reveal his thoughts, the motivations behind his puzzling behaviors, and the depth of his emotions: “One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours.” In doing so, he begins to peel away some of the layers of misunderstanding that surround this baffling diagnosis. In fact, the theme of misunderstanding is one the author consistently returns to throughout the volume—correcting and clarifying untruths with gentle charm, authority, and, at times, good natured humor.
Unlike most books about autism to date, The Reason I Jump is part diary, part confessional memoir. “Written” by the author using the accurate but laborious method of pointing to letters on an alphabet board method, the book is divided into Naoki’s answers to 58 common questions about autism: “Why are you so picky about what you eat?,” for example, or “Why are you always running off somewhere?” The book also includes short fables by Naoki that are structured like dream sequences and end with a moral. Read in small doses, the book feels like overhearing a private conversation or a therapy session. Read as a whole (which takes less than two hours), the book dispels common myths about autism while simultaneously giving readers, parents, caregivers, and those with autism a glimpse of an autistic person’s daily life—the eardrum splitting sounds, the confusing emotions, the compulsion to line up objects or memorize timetables.
Naoki’s book is a call for all of us—parents, caregivers, teachers, doctors, psychiatrists, therapists—to change.
The most stirring passages reveal simple truths. For example, when asked, “Why don’t you make eye contact when you’re talking?,” Naoki explains with good humor that “making eye contact … feels a bit creepy.” People with autism, he says, are literally looking at “the other person’s voice … trying to listen … with all of our sense organs.” To me, as a parent who has always wondered why my son watched my mouth and lips as I spoke, this discovery feels revolutionary. I’m certain that other readers of The Reason I Jump will never approach the issue of “eye contact” and autism in the same way again. Similarly enlightening are Naoki’s writings about the challenges of time comprehension, lining things up, or keeping oneself still. Here is his explanation of the emotional breakdowns that often accompany autism: “Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or meltdown.” Naoki’s assertion that “we experience the same emotions that you do” reveals him as deeply empathetic and emotionally vulnerable.
Critical responses to the book have varied. Rave reviews include a glowing endorsement by Jon Stewart that catapulted The Reason I Jump onto the New York Times and Amazon bestseller lists, as well as coverage by Slate, NPR, Parade, and even People magazine. Internationally the book has captured audiences, especially the global blogosphere. Not all reviews have been positive; some, including Sallie Tisdale in the New York Times,3 found fault with the translation, complaining that the combination of the author’s adolescent Japanese and the colloquial English of the translation made for “odd reading.” Bloggers both in and outside the autism community have embraced the book, yet some also object that, like autism, the book is subjective, and find it worrisome that it is being marketed as giving insight into all forms of autism.4
Despite this range of responses, or perhaps because of it, anyone who knows or works with autism—academics, medical professionals, parents, families, caregivers, even the media—can gain insight, compassion, and sympathy from reading The Reason I Jump.
Many parents will recognize their own children in this book in unexpected and sometimes startling ways. As a special needs parent, I found moments of illumination in reading about Naoki’s visual schedules, terror of sounds, obsessive compulsion with details, struggles with time, wandering, and, of course, the reasons he jumps and performs similar motor stereotypies. The Reason I Jump is a call for all of us—parents, caregivers, teachers, doctors, psychiatrists, therapists—to change. It has convinced me that we can shift our collective focus from what is wrong and lacking in individuals with autism to accepting and celebrating the abilities of those on the spectrum.
The Reason I Jump is a rare gift to all parents, caregivers, and the autism community—translating the untranslatable, “speaking” the unspeakable, and knowledgably inviting us inside a brave, unknowable new world. I look forward to the day when autism is equated not with disability but with diversity.
- According to the Center for Disease Control’s Autism Spectrum Disorder page. ↩
- See the Autism Society’s Diagnosis page. ↩
- Sally Tisdale, “Voice of the Voiceless,” New York Times Sunday Book Review, August 23, 2013. ↩
- Melissa Firman, “Book Review: The Reason I Jump: The Inner Voice of a Thirteen-Year Old Boy with Autism, by Naoki Higashida,” melissafirman.com. ↩