Almost two decades ago, I went to a medical conference to learn about treatment options for my son’s ulcerative colitis. His doctor described an incident involving a non-speaking autistic teenage patient, who everyone assumed couldn’t understand anything. His parents were mystified and frustrated because his repetitive behaviours, including screaming and hitting his head against the wall, were out of control. As they were telling the doctor that his teachers were sure this was a purely behavioural issue, the boy grabbed his sister’s preschool alphabet toy and typed, help me it hurts.
I immediately teared up and couldn’t stop thinking about it. This is, of course, an emotional story that would affect any person. But it was acute for me, more personal, because of what I had gone through as an immigrant.
We moved to the US from South Korea when I was 11. I didn’t speak any English, and my parents had warned me that it would be frustrating at first, not being able to understand or say anything. But it went beyond that. I became a different person in English. Back in Seoul, I had been a confident, outgoing girl. In Baltimore, I was a bah‑bo. Stupid, timid and, most of all, ashamed. I recognised for the first time the deep-seated prejudice so many of us carry: we equate verbal fluency with intelligence.
This intensified when I learned English to the point where I could understand it but still couldn’t speak it. When you can’t speak, others assume you can’t understand. Kids made fun of my heavy accent, my “broken” English, right in front of me. This was more than 40 years ago and, recalling it now, I still feel that burn of humiliation.
And just think: my experience was nothing compared with the lifelong condition of the boy from the conference; I knew I’d eventually learn English, and, in the meantime, I still had an outlet in Korean. I couldn’t imagine how much trauma the boy must have endured, having words and thoughts locked deep within, fearing he would never have an outlet in any form or language for the rest of his life.
For some time after the conference, I thought this boy was an anomaly. But then I started hearing about therapists who approached children’s so-called severe, non-verbal autism from a new perspective, asking: what if their speech issues are due to motor challenges not cognitive deficits? Apraxia rather than intellectual disability? What if they worked to strengthen their motor skills and sensory regulation to teach them to point to letters?
The results were startling. The children started expressing themselves verbally, by spelling out words. Not just communicating basic wants and needs (like want ice-cream or head hurts) but essays about history, poetry, their experiences of feeling imprisoned in their bodies. These pieces were so beautifully written that I’m ashamed to admit I questioned their authorship at first, wondering how much their therapists were “helping” them. It didn’t help that the first things I read when I Googled these spelling therapies were by sceptics claiming they were all shams; the children mere puppets with the therapists cueing them or, worse, moving their hands.
I decided to research these therapies in earnest, beyond merely by reading about them, and reached out to meet local families and therapists. My doubts fell away as I watched videos, observed sessions and eventually communicated directly with the children, sitting next to them as they slowly moved their own arms to answer my questions and ask their own, pointing to letters on boards held steadily by their therapists in front of them. I met kids who had participated in a peer-reviewed, published study at the University of Virginia, which tracked the eye movements of non-speaking autistic spellers and determined that they were looking at and selecting each letter themselves, not looking at the therapists for cues. I began teaching creative writing to several groups, and I sat in awe as I watched them respond to my prompts, all the thoughts that had been stored in their heads for so long coming out in beautiful, polished sentences.
The more I learned and the more spellers I met, the more I wanted – needed – to write about this. I write when I don’t understand, to process and interrogate painful, perplexing things, and the bias against non-speakers was as painful and perplexing as anything I’d encountered. Why had it taken so long for society to question the deeply ingrained fallacy equating speech fluency with intelligence, thereby condemning this whole population of people to a virtual prison? Why did sceptics persist in claiming that the spellers’ words were not their own, despite clear evidence otherwise? And, most of all, why hadn’t I learned from my own experience that just because you can’t speak doesn’t mean you can’t think or understand?
But, even more than that, I was inspired by the amazing community of spellers, and I wanted to include people like them in my work. I created a story about a biracial Korean-American family with a 14-year-old boy, Eugene, who has autism and Angelman syndrome and cannot speak. Eugene and his father go on a morning walk to a nearby park, but only Eugene returns, and he can’t tell the family or the police what happened. As the family is thrown into crisis and forced to try to communicate with Eugene any way they can, they take us on the same journey I went on – of questions and doubts, shock and guilt, and ultimately, hope and inspiration.
Even though my intentions were good, I worried about the representation of a non-speaker – someone I am not. I shared this concern with my creative writing students, who responded that they had read memoirs by spellers (like Naoki Higashida’s groundbreaking book The Reason I Jump, translated by David Mitchell and Keiko Yoshida) but no novels featuring spellers. They encouraged me to keep writing, wanting to see full, multidimensional non-speaking/speller characters in more novels to let the world know that people like them are a part of society and deserve to be seen and respected.
So I kept going, sharing drafts of my novel with multiple people in the speller, autism and Angelman communities over many months, hoping it would help to shed more light on this growing community of people who have been underestimated for too long. Not just through the story itself but in other ways, too. For the audiobook, Eugene’s words were read by “Autastic Tom” Pruyn, a speller who can read out written words. For three book events, spellers served as my conversation partners on the stage, and, in many others, spellers in the audience used letter boards to comment and ask questions (prompting amazement from other audience members). Spellers have participated in book clubs and written insightful book reviews – all generous acts of support for which I’m grateful.
The day after my US book launch, a TV crew spent the afternoon with my students and me. My prompt was: describe how you’re feeling about being filmed for national TV. One student typed out on his iPad: “The sounds of our silent voices will reverberate throughout the world.”