Reimagining the Autistic Mother Tongue
Content notes: child abandonment, abusive adoptive parents, anti-Asian violence and misogyny, mass shooting, ableist slurs and language, forced restraint of autistic people, ABA (applied behavioural analysis)
For most of my life, I attributed my needs and the fact that others frequently didn’t understand them to an inherent lack.
I was bad at communicating. I was bad at chores. I was bad at being in groups. The worst part, the unspoken shame of meltdowns, before I had a name for them, was that I felt like I was fundamentally a bad person—manipulative and spoiled, aggressive and violent, unable to control my temper. My anger made me feel out of control. Sometimes, I felt and then acted like I needed to be controlled.
The problem was me, the problem was me, the problem was me.
But my disabled friends and community, including and especially disabled QTBIPOC (Queer Transgender Black, Indigenous, People of Color), weren’t going to let me believe that for long. Over the course of the pandemic, letting myself fully confront the ableism of the world around me—yes, the world that let hundreds of thousands of people die for the economy—and in turn, the respect I deserve as a human being, I realized I was autistic.
I was nervous. I wasn’t just making this up, was I? I watched TikToks, QTBIPOC autistic public speakers’ speeches on Youtube, and documentaries; listened to interviews in podcasts; and read disability justice books, poetry, and blog posts. I got to know people in the community, asked questions, and did research. One of my closest friends told me that they thought I was autistic this entire time. What?!
I loved researching this new-to-me identity. I had always been so good at putting myself last, that giving a name to something that I was, am, and will be my entire life felt liberating.
I also knew I couldn’t stop there. In “Cinderella’s Stepsisters,” a speech for Barnard College’s 1979 graduation in New York City, Toni Morrison said that “the function of freedom is to free somebody else.”
Realizing I was autistic made me feel powerful. As a poet, I felt like I could write into the depths of neurodivergence and offer new outlines of previously hidden truths about the world we live in. I felt like I could release the shame of ableist violence I experienced throughout my life. And that also meant the responsibility of making space for others, to imagine beyond myself, to consider the future, to free someone else.
A New Chinese Name for Autism?
Within a few months of realizing I was autistic, the world found out about a boy named Huxley. Huxley is an autistic Chinese boy who was adopted by white American parents who had put his meltdowns all on display on Youtube, and then, one day, after not vlogging about him for months, these parents revealed that they had decided to “rehome” him. Like a coffee table on Facebook Marketplace.
The thing I couldn’t stop thinking about, as a 1.5 generation Chinese settler who isn’t an adoptee, was that Huxley must have had a Chinese name.
Is it wrong for me to wonder? Why did his white adoptive parents, or perhaps the adoption agency, name him after an English dystopian author?
After the shootings in Atlanta, when six Asian women were killed in an act of white supremacist, misogynist, anti-sex worker violence, and after many Asian elders were attacked on the streets and even killed in the United States, many in the East Asian diaspora on Twitter began putting their Asian names on their accounts. It was in response to the mainstream media wrongly abbreviating many of the women’s Korean names. It was in response to their English, Korean, and Chinese names placed side by side throughout our social media eulogies. It was in response to the violence that Asian elders were experiencing throughout North America, of centuries of white supremacy. It was in response to the shame we have been made to feel for so long, and yearning to finally—collectively— let it go.
My own Chinese name on Twitter isn’t my real one: it’s a homonym of “pipagao” the herbal cough syrup also known as pei poa goa or the brand name nin jiom, made from loquat. The homonym roughly translates to high crawling skin—it’s silly, goth, and doesn’t make a lot of sense. But it makes me happy that I can protect my privacy online while also proudly display my heritage at the same time.
Names are complicated. They’re sacred and beautiful. And they’re also hidden away, stolen, forced on a person, made up, and subject to change. Sometimes, names are like keys we use to open and close a room. Other times, they are like coats you take on and take off, a hat that others can recognize you by in a crowd full of masks, a playful tattoo on your collar bone. Sometimes we don’t share our given names in public because of surveillance from our country of origin. Other times we change them to better fit our gender. Sometimes our names are considered difficult to pronounce and in turn, we are considered difficult.
A lot of the times in our white supremacist world, we are given names to assimilate into a dominant culture. That is one of the reasons I go by Jane, the English name I was given in grade one in English class in a Shanghainese elementary school. But unlike Huxley, I have the privilege of knowing my Chinese name.
The two current names for autism in Chinese are 自闭症 /自閉症 (zìbì zhèng) or 孤独症/孤獨症 (gūdú zhèng). The first set of characters means self, shut-in, and disease, respectively; the second means loneliness, disease. It’s funny—they remind me of quarantine, a hermit who wants to keep safe from a pandemic, an aching loneliness of the moment we’re in, an aching isolation of being excluded from public health decisions.
But these names also remind me that autistics are still largely misunderstood and pathologized in the motherland and around the world. Ableist insults in Chinese like 笨蛋 (bèn dàn), which means idiot or fool and can be transliterated as “dumb egg” or “stupid melon” and are sometimes even said affectionately to one’s closest loves, pervaded my upbringing. Terms like 白痴 (báichī) paints innocence as idiotic, and lack of intelligence as a flaw. Global capitalist, western, and ableist pressure push Chinese parents to create their own form ill-researched institutions for their developmentally autistic children that are not about accommodation and care but about conformity; on Youtube, when you look up “autism” and “China,” media shows weeping mothers expressing the challenges they face as parents while their child is restrained.
Such context urges me to reimagine cultural reclamation as one that must involve disabled people—speaking for ourselves.
What would a better name be for autism in Chinese? After all, language is malleable—like putty, like water, like the walls of prisons crumbling to make way for a better society. Slang emerges constantly from HK, Chinese, and Taiwanese Internet. The character for biangbiang noodles—one of the most complex Chinese characters that cannot be typed on a computer—is an elaborate amalgamation of multiple characters, including the characters for moon, horse, speak, heart, eight, roof, knife, and walk.
The creation of the gender neutral Chinese pronoun “X也” reminds us of the western, colonial roots of gender binary itself, and that “他” had originally applied to all genders.
The problem with the Chinese word for autism—a problem that all autistic people face today—is that the history of autism is inextricably tied to the history of eugenics. It is a European history of studying people, speaking for people, mis-categorizing people, confining people, torturing, and killing people.
It is a history of violence, force, and stripping people of their autonomy and real identities. Applied Behavioural Analysis (ABA), was a method of interventionist treatment of autistic children created by Dr. Ole Ivar Lovaas, the same doctor who created gay conversion therapy, that targeted autistic behaviours. Such frameworks follow the logic of sex addiction therapy, the home of misogynist shame that led the killer in the Atlanta shooting to murder. By extension, “treatments” rooted in shame and stigma follow the logic of substance use disorder treatment that shames people who use drugs out of healing. It prevents the implementation of harm reduction services that save lives in an opioid crisis.
This violent web of history, present, and associations is why many in the autistic community have decided that Asperger’s is no longer a good term for us, why many of us reject low and high functioning labels, and why we constantly discuss what words and language we want to use for ourselves. All told, if we view autism from the perspective of those who had originally coined it, and not contemporary autistic people, we would never live in a just society where everyone could survive and thrive.
Finding Language to Love Ourselves
One night the other last month, I couldn’t sleep. I thought, why not come up with a new Chinese word for autism? Being a heritage speaker, my vocabulary is small. All I could think of was the words for “cute person”—可愛的人 (kě’ài de rén)—which involves the characters for “can”— 可 (kě)—and the character for “love”— 愛 (ài). That is, those who allow themselves to be loved. Then, I got out my pink pen and put the character for love inside the “口” (kǒu—i.e. mouth, opening, entrance) of the character for can (可). It was like putting love inside of one’s mouth, protected and held, but still present. Then, when I put the character for “self”— 自(zì)—beside this new word, I got the meaning, “those who allow themselves to love themselves.”
This new word reminded me that we do not have to tell each other we love each other to express love. It reminded me that speaking is not the only way to communicate.
I was mostly joking and playing around when I posted this neologism on Twitter. I was also trying to imagine ourselves as autistic people as loveable, as loveable to ourselves, not to others. Not as shut-ins but as those who have boundaries and are protective of the love we give. As not inherently lonely, but made lonely by a world that has chosen to isolate us.
Sianne Ngai’s theory of cute culture, as it applies to avante garde art, fascinates me. She argues that cuteness in our capitalist society is about consumption. It would be wrong to call autistic people cute as a whole—we are not trinkets to buy and throw away, a plaything you only want around when soft and cuddly, never sharp or hard. But my speculative linguistic reimagining makes me ask: why do we choose to marginalize autistic people—infantilized and perceived as cute or consumable in one moment, and then violent and aggressive in another—in the first place?
In Rotem Anna Diamant’s review of Ngai’s theory, she argues how cuteness can be subversive for people reclaiming it through physical appearance: “Cuteness can be a layer of artifice that signals to someone else what we desire to communicate; it can enable us to appear how we want to appear; it is a conversation about who we are that we do not need to speak out loud.” When I reclaim cuteness as a small, short, East Asian, queer, and autistic person—who is always already perceived as cute—and when I use the word for cute to reimagine autism in Chinese, I expose the powerlessness that autistic people have endured throughout time. I ask, is others’ perception of my cuteness permission to harm me? Does it let others love me like the Chinese word for cute suggests? Is it better to be lonely, shut in, or consumed? Why are these the only categories available?
A lot of us autists keep adorable plushies by our sides. Though we are adults, we get treated like children, which only shows how badly our society treats children. But really, our special interests and stim toys are how we practice self-care and self-love—much wiser and compassionate lessons for children and adults alike than punishment and deprivation.
Language is a playground; words are stim toys. It doesn’t make sense for only me to play with them. Whether it’s better to reclaim the current Chinese word for autism, to de-stigmatize it or come up with a new word is up to the community. I don’t imagine there to be a single answer that fits everyone.
Dear reader: if you are autistic and have a relationship to the Chinese language—whether it is because you grew up with it, are fluent in it, a heritage speaker, want to reconnect with it, or live under its imperial rule, what do you want the word for autism to be?
I live on the occupied ancestral, unceded, and traditional homelands of the Musqueam, Squamish, and Tsleil-Waututh peoples. What are the words for neurodivergence and autism (just as it exists in Cree) in Sḵwx̱wú7mesh sníchim and hən̓q̓əmin̓əm̓?
How do you say autism in your language? Do you think it should be something else?
These questions are not merely rhetorical. I want the broader autistic community to be safe enough for us multilingual racialized people to express and remix our respective heritages. I want the Chinese diaspora to be a place where I can feel safe as an autistic person. Through reimagining language, I want to imagine that we can undo the colonial and ableist violence around us, too.
Diaspora has the agency to remake culture and tradition, just like those in the homeland, just like autistic people in the diaspora. The point isn’t only who or where.
The point is that it frees us.
Jane Shi is a queer Chinese settler living on the unceded, traditional, and ancestral territories of the Musqueam, Squamish, and Tsleil-Waututh First Nations. Her poetry, essays, reviews, and multimedia art has appeared in Briarpatch Magazine, grunt gallery, Watch Your Head: Writers & Artists Respond to the Climate Crisis, and “Writing Ourselves / Mad” at ANMLY among others. She is a submissions reader at Room Magazine and a board member of Canthius magazine. She wants to live in a world where love is not a limited resource, land is not mined, hearts are not filched, and bodies are not violated.
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