One of the great challenges in working with patients with autism is that they often cannot describe their health challenges to anyone. Instead, we look for signs of distress as demonstrated by certain behaviors; either stereotyped behaviours such as flapping or stimming, or emotional signs such as anxiety, obsessions or meltdowns. Clinically, I’ve learned to categorize these symptoms into recognizable patterns; from bowel pain, poor digestion, heavy metal burden, poor immunity, and other myriad factors. When these symptoms improve, we believe it is a sign of a lowered physical burden of disease. Still however, until our patients can talk to us directly, we are evaluating based on what we see in front of us.
As an ND, I have an advantage. My longer contact time allows me to see more complex patterns of behaviours than during a standard family practice visit. Still, with my poorly- or non-verbal patients, I often feel that I’m having to guess whether an increase in stereotyped behaviours such as flapping or jumping indicating more distress or just that what they want in that moment is to communicate something important?
For years, I have wondered if we could be getting it wrong when we assumed that x symptom meant y problem in every patient with autism. Having studied linguistics in grad school before becoming an ND, I knew things could often be lost in translation between languages. Why would this not be the case in autism? Maybe our patients are in fact experiencing the world differently and are trying to communicate with us, but we just need to translate better.
I think of a particular patient in my practice, a lady in her forties who struggles to express herself verbally. When she comes in for a visit with her caregiver, she will often look at me quite intently as she is attempting to explain herself. At these times, I often find myself wishing that I had a special decoder to help her communicate what I can feel she is trying so hard to tell me—and, in turn, help me understand her better.
This is one of the reasons I was profoundly moved after reading a book that came out recently in an English translation from Japanese called The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. The author is a young Japanese man (now adult) with autism who wrote the entire book with the help of a caregiver and a alphabet grid to form letters and numbers. It describes the author’s experience of his life from the viewpoint of a highly perceptive, even poetic, non-verbal 13 year old.
The Reason I Jump is organized as a series of observations and stories, with an often-breathtaking level of insight into the inner world of living with autism, its challenges, and struggles, and sometimes, its moments of sheer delight. Many of the chapters are set up as answers to commonly held questions, concerns or misconceptions that people have about ASDs, including that people with ASD lack empathy, aren’t listening, or are uninterested in the people around them. The author doesn’t flinch when explaining behaviors—such as the infamous autism ‘meltdowns’ that can last hours—that are potentially embarrassing:
“When I see I’ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can’t think straight about anything anymore. However tiny the mistake, for me it’s a massive deal, as if Heaven and Earth have been turned upside down. For example, when I pour water into a glass, I can’t stand it if I spill even a drop.”
The author’s unique understanding of the world around him, his place in it and the elusive nature of speech, communication and memory, leads him to some very interesting places. One was a recurrent theme on the fascination that many young people with autism have about TV commercials, train schedules, calendars, spinning objects or running water. Often these themes, in term, become organizing principles to make sense of the world that is often chaotic, invasive and hostile to him. The author also writes very passionately and quite poignantly about the elusiveness of memory and perception in autism, and how trying to function in the world without the scaffolding of remembered language, sensation and sense of place, leads to the continual frustrations that are a normal fact of life for him.
I would recommend this book to any professional or family member who works or lives with children or adults on the autism spectrum for its comprehensive view of a life lived inside this condition. I found myself recognizing many of my own patients in Naoki’s insights, including one lovely 12 year old boy who jumps up and down to tell me when he feels his mom and I are onto something that could help hm.
Book: The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism trans: KA Yoshida and David Mitchell, Alfred A Knopf Canada, 2013.
Book Cover – Fair Use
Child with Autism – Wikimedia Creative Commons
A version of this review first appeared in the 2013 BC Naturopathic Association Bulletin