Lots of stereotypically ‘Asian’ behaviour is similar to the traits of autism, meaning many Autistic Asians might be missing out on a diagnosis. 

Van Mei memorised pi to 100 decimals when they were a child. Only at 26 years old did they clock that maybe they were autistic. “Asian kids are praised or expected to do well in schools,” Mei says. “No one picked up on cues, like that my reading comprehension was five years above my actual age, or that I struggled to fit in and understand peers. My special interests aren’t necessarily trains, and I’m not unempathetic like some assume all people with autism are.” 

Still, despite being certain they are autistic, Mei was unsuccessful in getting diagnosed by their psychiatrist. The reason they were given was that they socialised well. “I do pretty well in social settings because, like many, I’ve masked my whole life to fit in,” Mei says. (Masking is a strategy used by some autistic people, whether consciously or unconsciously, to appear neurotypical. This adjustment is made to invisibilise divergence from expected social or cultural behaviours.) “It’s often only as adults and in safe environments that people start to learn how to unmask.”

Lots of stereotypically “Asian” behaviour is similar to the traits of autism. Does this mean high-masking autistic Asians are slipping through the diagnostic cracks?

Little is known about Asian autistics in Aotearoa, or even the wider New Zealand autistic population. We have no national registry or data set, and national studies including Asian autistics aren’t statistically significant and therefore difficult to draw conclusions from. Asian autistics have been chronically underrepresented in research, media, leadership and even in receiving support. In the US, less than 1% of Asian American children with autism spectrum disorder (ASD) will receive treatment even though children of Asian descent have a higher than average rate of ASD diagnoses in the US. 

I sit in on a small support group in Waikato for parents of autistic children. They’re all Chinese and have been meeting seasonally, and one of the mothers who has been a part of the group for years says it’s weird that they haven’t had new members. “Maybe we don’t have that many Chinese parents with special needs children in this area,” she says. 

It’s not impossible that there is just a low prevalence of autism for Asian people in Aotearoa, but we do know that autism diagnoses don’t paint the full picture of autism prevalence. The 2022/23 New Zealand Health Survey told us that boys were four times more likely than girls to be diagnosed; a statistic echoed in international studies. However, there aren’t necessarily more autistic boys than girls. Researchers suggest male bias in diagnostic tools requires women to exhibit more intense features, greater developmental differences, or also have an intellectual disability to meet the criteria for an autism diagnosis. 

It wouldn’t be surprising if Asian autistics weren’t being captured by this Eurocentric, masculine framework either. In a 2020 New Zealand study of 9,555 autistics aged 0-24, the male bias weighed heaviest among Asian people. Only 17% of the sample of Asian autistics were female. 

The latest census stats show that Asian and Māori have the largest numeric increases in population since 2018 and nearly a third of Tāmaki Makaurau identifies as Asian. Despite a booming Asian population, a recent report from The Asian Network demonstrated that our health system doesn’t understand the wellbeing of Asian New Zealanders as well as we should. The report identified how health outcomes among different ethnic groups within the Asian-identifying population have been overlooked because they are assessed as an aggregate, lumped group, rather than distinct ethnic groupings. 

In an attempt to separate these groups, the report said Chinese and South Asian children were significantly less likely to be diagnosed with autism than European and “Other” children, but adds that “it is currently unknown whether this is due to differences in actual prevalence or in diagnosis rates”. 

Diagnostic blindspots

New Zealand currently uses the DSM 5 diagnostic criteria which requires the following to be present before a person will be diagnosed with ASD:

• Persistent deficits in social communication; 
• Restricted, repetitive patterns of behaviour, interests or activities;
• These symptoms are present in the early developmental period;
• These symptoms cause clinically significant impairment in social, occupational or other important areas of current functioning;
• These disturbances are not better explained by intellectual disability or global developmental delay.

Yet the examples provided of deficits in social communication and restricted, repetitive patterns of behaviour, such as abnormalities in eye contact and body language, reduced sharing of interests, emotions or affect, and ritualised patterns, aren’t always problematic and can be common in Asian cultures. For example, rote learning and repetition is an encouraged method in Asian families, but may be perceived as a restrictive, repetitive behaviour.

The standard by which “function” and “impairment” is assessed is also up to whoever is diagnosing the patient. Many Asian cultures are collectivist and socialise people to conform and maintain social harmony. The traditional cultural script for Asian migrants calls them to be family-oriented, humble, and hardworking, even if they have migrated to countries that value individualism and freedom. What looks like “impairment” to a clinician – foregoing parties to study, having a small social circle consisting of mostly family – might be normal in Asian cultures.

What this means is that ASD could be both overdiagnosed or underdiagnosed in Asian patients, based on the DSM-5 criteria: traits that are normal in Asian culture could be seen as impairments, but conversely, traits that actually indicate autism, like restricted, repetitive interests, might be dismissed as just “being Asian”. In short, the diagnostic criteria aren’t fit for purpose for Asian patients.

For Mei, while a formal diagnosis may have helped them feel recognised and empowered to seek support, they have accepted that they can trust their own body with a self diagnosis, rather than relying on “a DSM that’s rooted in oppressive science and hasn’t kept up with the times,” as Mei puts it. 

Catherine Trezona, the national manager of Altogether Autism, says self-diagnosis is perfectly valid and there are several reasons why a formal diagnosis might be harder to obain as an adult. “If you’re requesting a diagnosis as a child, there’s something about the autism that isn’t being completely masked.” She adds that while there is a robust process for diagnosing children through a multidisciplinary process that is part of a funded child-development service, it’s less common for adults. Adults can be diagnosed through community mental health services “but that’s not something that many mental health clinicians are even aware of,” she says.

Trezona says while Altogether Autism makes an effort to represent Māori and Pasifika people, “Asian [representation] is not something we’ve tapped into… We don’t have any Asian advisors on the team at the moment, so that’s definitely a control group that we’re missing.” 

Cultural attitudes

Depending on which part of Asia you descend from, there are cultural and religious reasons why disability may be seen as a negative thing to be dealt with individually, or as punishment for wrongdoing. Asian people, of course, contain a myriad of ethnic identities and live in different economic and political conditions. But according to research, social attitudes towards disability between global north and global south Asian countries are similar, in that they are seen as individual problems (as opposed to conditions that can be accommodated societally) or as a result of “karmic justice” for one’s wrongdoing. 

Even though Rafiqah Sulaiman Abdullah was diagnosed and recognised by specialists as having ASD both in the Philippines and in Aotearoa during childhood, her mum didn’t believe in the diagnosis and simply saw her as a naughty child. “My mum thought I would get better or grow out of it,” Abdullah says, “that she could cure me with fruit juice and vitamins.” 

“It started off with spinach, carrot, apple… then it became broccoli, garlic, then ginger,” she adds. “[My mum] had all the material about autism, but she didn’t believe it.” 

More often than not, it is the parents who decide whether or not to pursue a diagnosis for their child. Besides language, cost and knowledge barriers, the diagnosis and intervention is really at the mercy of a parent’s judgement and their beliefs about what constitutes normal child development. Given the diagnostic criteria in the DSM are framed in terms of deficiencies, parents may not pursue a diagnosis if they believe it says something negative about their child. 

While I’m talking to Abdullah, she’s playing with a piece of plastic packing strap, rubbing her fingers over the lengths. She says it gives a soothing sensation from the vibrations as she twirls and shakes it. This is her way of stimming, a repetition of certain physical movements or vocalisations to self-stimulate, calm down and release stress. 

If we had this conversation a few years ago, she says she would have only been seen fidgeting with a USB cable in public. One of her cables is now part of a collection in Te Papa. The artefact captures a past version of Abdullah, who wanted her stimming to be inconspicuous because “it was considered shameful behaviour”. People never asked her why she was holding a USB cable, but she reasoned that if she had a measuring tape or string – her other preferred materials for stimming – it’d bring attention to her autism and her “othered” identities (she’s a Muslim, multiply disabled, asexual trans woman.)

Nowadays, she cares less about people noticing her stimming and uses a variety of items to openly stim. “Masking is very much a very intense effort and I’m not really masking anymore,” Abdullah says, ”but I still do it to assess certain spaces or when around hostile environments.” 

She alludes to the idea that autistic traits according to the DSM-5 can just be normal in non-Western cultures. Abdullah once told a friend who was clapping their hands in a particular way that it was a very autistic thing to do, and the friend responded that it was just part of Indian culture. 

The model minority myth and autism

Back at the Hamilton support group, the organiser says it’s not uncommon for people to feel that autism and disability are not things to be proud of. “While [parents] can cope, they think it’s alright to manage alone without having other people. Maybe they feel ashamed. But one day when they really burn out they may think, ‘I need a group to support me’.”  

For migrants and children of migrants, disability inconveniences those who believe they will be rewarded by playing by the rules of a meritocratic society. Even if it’s a disability they can hide, masking comes at the cost of burnout and anxiety. Jocelyn Tay, an advocate for disability rights in Singapore, writes in Not Without Us, “neurodivergent people, individuals who do not necessarily perceive or behave in ways that comply with ‘merit’, are thus offered a choice: comply with normativity at the cost of mental and psychological health, or be consigned to failure.”

Mitch Xu, who suspects she has autism, has felt like an alien since childhood, but didn’t think she had ASD. Then she went to university and says she was “sniffed out” by a number of diagnosed autistics. Xu constantly feels like everyone else is in on something she’s not and becomes mentally exhausted working out how to act in conversations with acquaintances. 

She says there are two dominant narratives of what an autistic person looks like: “those who are comorbidly intellectually disabled and/or have very high support needs and therefore deemed invalid by society, or the hyper-intelligent savants à la Einstein or Grandin…Those on the more extreme ends will receive a diagnosis young [whereas] all the ‘everyday’ autistics in the middle are more likely to slip through the diagnostic cracks.” 

Xu says not only is autism often misunderstood on a cultural basis, but “there’s an expectation of excellence associated with Asianness via the model minority myth.” The model minority myth refers to the idea that Asian people are exemplars of achievement, representing successful assimilation into Western society; Asians are seen as being quiet, compliant, hard workers, and perfectionists with economic success stories in spite of their race. 

Internalising the model minority myth, and especially the expectations that Asians are naturally high achieving, can make it difficult to ask for help, and research has documented how upholding the model minority myth reproduces systems of social, educational and health inquality. 

Xu is beginning to seek an autism diagnosis. She tells me she also has an ADHD diagnosis which her parents know about, but says she will never tell her parents that she’s seeking one for autism. “They haven’t said nice things about autistic people in the past and they have used less than favourable language about the autistic kids that I’ve shared classrooms with… The impression I get from them is that they think ADHD is something that naughty kids have, and autism is something that stupid people have.”

So why is she going through the trouble? Xu was at first indifferent to seeking a diagnosis as it would “do little to help me enjoy living in society more.” However, now that she has plans to return to postgraduate studies, she is “taking a utilitarian approach” in seeking a diagnosis in case it allows her accommodations to make study more comfortable by, for example, being allowed to wear noise-cancelling headphones during exams. Having very sensitive hearing and synesthesia, Xu remembers in her undergraduate studies that she would be distracted by ambient noises during lectures and exams. While she thrived in parts of her studies in music, she struggled in music theory classes. 

Xu says it’s hard to know whether she will meet the criteria for an autism diagnosis. Something high-masking autistic and Asians have in common is being predisposed to assimilation and meeting social expectations. This could be another test that Xu passes with flying colours. And until something is done about our ascertainment bias, we won’t know exactly how autism and ethnicity intersect.