‘Falling through the cracks’: Why ADHD is under-diagnosed among Asian Americans

Behind a veneer of accomplishment, underneath good grades and musical talents, Emily Chen was in disarray. She never knew what she was missing, perpetually cycling through potential mistakes in her mind in a desperate attempt not to slip up.

“I was using anxiety to motivate and power myself. I’d use it as a way to remember things,” said Chen, who lives in Newton, Mass. “Do I have an assignment due now? Do I have to be somewhere now? I was using all my energy just to stay afloat.”

At the age of 23, after navigating school and college in a nearly perpetual state of panic, Chen was diagnosed with ADHD. At the time, she was the only Asian American she knew with attention deficit hyperactivity disorder.

Medical knowledge of ADHD has advanced rapidly over the past decade, taking it from a label applied to unruly schoolboys and often used as shorthand for misbehavior, to a condition recognized as a neurodevelopmental disorder with clear biological underpinnings. Amid that sea change, though, people of color have all too often been left behind.

In 2021, research showed that for every 100 white children diagnosed with ADHD, there are 83 Black and 77 Hispanic children, and just 48 Asian children, with the diagnosis.

Despite the disparity, researchers and mental health professionals describe a dearth of research and outreach in Asian American communities, or even conversation, aimed at narrowing this gap. The “model minority” stereotypes — that Asian American children are strong students and well-behaved — not only block these kids from getting an ADHD diagnosis, several said, but also seem to deter analysis of the inequity.

Andy Pham, a professor of school psychology at Florida International University, said he’s heard researchers and medical professionals dismiss concerns about uneven diagnosis rates, saying, “If there’s lower prevalence rates, isn’t that a good thing?”

It clearly is not, said Patrick Goh, a psychology professor at the University of Hawaiʻi at Mānoa, who is one of the few researchers trying to untangle the reasons for the low rate. One key statistic drives him: While around 2% of Asian American children are diagnosed with ADHD, research in Asian countries finds an ADHD rate of around 6%.

This discrepancy, said Goh, suggests children are going undiagnosed and points to a specific problem with how Asian Americans are perceived and treated in the U.S.

“The Asian population in this country is often set aside, ignored, seen as the perpetual foreigner,” said Goh. Working to understand the low diagnostic rates and how ADHD affects Asian Americans is essential, he added. But, “it just isn’t happening.”

Perception is critically important in a condition that is still only diagnosed according to a cluster of symptoms. For Asian Americans, this perception is all too often dominated by the model minority myth.

As young as elementary school, Chen was aware of expectations that she be well-behaved and scholarly. The impact of stereotypes was only heightened, she said, because she matched those traits. “That just confirmed their belief that there’s no possible way I could need help,” she said.

When she told others she was struggling, they just said she was overthinking things, or else she needed to apply herself more. “It happened so much I came to believe that and stop listening to myself.”

ADHD is highly heritable, though the exact connection between physical biology and subjective experience is, as with all psychiatric conditions, poorly understood. The prefrontal cortex, which is crucial for attention, decision-making, and judgment, allowing people to decide what to focus on, tends to mature more slowly and have weaker connections to other brain areas in children with ADHD, though there’s not a perfect correlation between any physical brain conditions and ADHD.

Without a biomarker to provide a basis for a diagnostic tool, the medical landscape is messy. Clinicians define ADHD as a set of behaviors, including a persistent pattern of inattention. (Hyperactivity, once considered a requisite, is now seen as symptomatic of a particular type of the condition.)

Researchers use different definitions when studying the disorder and, earlier this year, the Centers for Disease Control and Prevention called the lack of clinical guidelines for diagnosing adults a “public health concern.”

Typically, physicians ask an array of questions to determine how much patients struggle with organizational and management behaviors. ADHD can be confused with trauma or depression and, to rule these out, physicians seek to determine whether attention difficulties affect a patient over time and in a range of environments — all of which puts emphasis on how someone is perceived both at school and at home.

In Chen’s case, although from the outside she looked as though she was doing well, her ADHD was masked by incessant anxiety. She took copious notes, though they were too illegible and disorganized to be of much use. She constantly pushed herself to study more, study better, and the relentless work was enough to earn decent grades.

She used an inordinate amount of effort to stay afloat and get to classes on time, though still ended up running late. “It’s scary to realize how much anxiety I was holding within myself,” she said.

After she graduated from college, she was even more depressed, often struggling to leave the house. She started seeing a therapist, who recognized signs of ADHD and referred her to a neuropsychologist. The first specialist she saw, though, was a white male physician who quickly ruled it out: Chen did fine in middle school, she said he told her, so couldn’t have the condition. It was only when she met with a second neuropsychologist, a woman who asked more detailed questions, that she got a diagnosis.

The first physician, she said, didn’t seem to be aware of how race and culture can heighten pressure to perform, which has medical implications: “It’s not really on their radar.”

A similar failure to understand the importance of demographic differences is likely also a factor in lower diagnosis rates for Black and Latino kids, added Chen, who is now working on a master’s degree at Emerson College in Boston about neurodivergent Asian American young adults.

Only the conversation for Asian Americans feels even further behind. “There’s a really active Black ADHD community and I’m very jealous,” she said. So far, she’s yet to find an Asian American community.

Studying the impact of ADHD on Asian Americans is complicated by the massive heterogeneity within that group. And yet the scientific literature on ADHD often exacerbates the problem by failing to include Asian American as a category at all. “Typically, you’ll find a comparison between white children, Black, and Latinx, and Asians will be grouped into an ‘other’ category,” said Goh.

When he first decided to study how ADHD plays out in Asian Americans and Native Hawaiians and Pacific Islanders, Goh searched for existing research, expecting to find a foundation of knowledge that he could build off. Nothing came up. “I was like, ‘Oh, no one’s doing this?’” he said. “Someone needs to do it.”

The lack of knowledge isn’t simply within peer-reviewed journals. Chen said she also did a thorough literature review, and couldn’t even find master’s theses or Ph.D. dissertations that were relevant.

Without research and conversation, there’s no clear answer as to why Asian Americans are less likely to be diagnosed for ADHD, but there are plenty of theories.

Niranjan Karnik, a psychiatry professor at the University of Illinois Chicago College of Medicine, whose family is from South Asia, said he’s seen stigma around mental illness in South Asian communities contribute to an unwillingness to consider the diagnosis. Inattention sounds like a mild condition that can be resolved with willpower and discipline, he said: “I see resistance from families and parents around ADHD often, until things reach a crisis point.”

Pham, who works with families with Southeast Asian and East Asian roots, said he’s noticed a similar reluctance: “Parents might not want to pursue treatments and interventions.”

Teachers, meanwhile, often have their own biases. Those who buy into stereotypes about Asian children performing well in school may be less willing to look past the myth and notice individual students who are struggling. Because schools initially identify many of the kids referred for an ADHD evaluation, said Christine Lee, a clinical psychiatry professor at the University of Illinois Chicago, this limits the pool of patients who come in for assessments.

Stigma can interfere with perception of even basic characteristics, Lee said, leading symptoms of ADHD to be dismissed as defiance or not be adequately probed. For example, Lee said, it’s not enough to ask if a child has a problem with focus. The answer to that question can be no, but once it’s broken down — for example, asking the child to perform a multiple-step activity — problems can emerge.

Several clinicians raised the possibility that, for children with milder ADHD symptoms, a rigorous support network and organizational aids such as schedules and prominently displayed due dates for assignments can mitigate the impact and limit the need for diagnosis. “Environment plays a huge factor in where these experiences are seen,” said Pham. “More structure, more reinforcement in positive behavior, you see less of the negative experiences.”

In some Asian American families with a strong emphasis on education, Goh said he’s seen parents compensate for their child’s struggle by keeping track of homework and giving them frequent reminders. “When you have high expectations set upon you, that could be accompanied by a willingness in those families to do whatever it takes to get to those environments,” he said.

Alexandra Di Martino, who is now 46 and was diagnosed with ADHD midway through college, said she felt she wasn’t allowed to have the disorder. To her Chinese American parents, it simply wasn’t an option. “If things aren’t getting done, I should be working harder,” she said. Even to pause and get a diagnosis would be time away from working, which she felt was a drain of both finances and money.

Di Martino, who lives in Oakland, Calif., said a family focused on success effectively masked her struggles. “Rather than letting me fail, my mom would write my papers for me,” she said. “She’d get tutors for me but the tutors ended up doing it for me.”

But physicians likely play a role, too. Goh has noticed that Asian American families often have a sense that the U.S. health care system doesn’t understand them, in a way that parallels the experiences of Black and Latino populations. Ultimately, he keeps coming back to the gap between ADHD diagnosis rates in Asian American children and their counterparts in Asian countries. “That 4% is very compelling to me,” he said. “Asian children are falling through the cracks.”