This is far from a new thing for her, but back in 2021, she saw a post on the social networking platform Mastodon detailing symptoms of adult attention deficit hyperactivity disorder (ADHD), and “I checked all the boxes”, she thought.

“But I’ve always been quiet,” she reasoned, looking over symptoms such as acting out. “There’s no way I have ADHD.”

Nevertheless, she found an adult self-report scale online and took the test, which indicated a high possibility of ADHD, and, as she intuited, on the attention deficit, not the hyperactivity side.

However unsettling, Liu thought that this might explain her careless behaviour, recalling her school days, when solving maths problems was a challenge – she would forget the steps of her calculations and have to start over again.

Her symptoms made it hard for her to stay focused on classes and assignments, but she survived through coping strategies: during class, with an absent mind, she pretended to be listening; after school, she would spend additional hours studying, compensating for the time wasted on zoning out.

The strategy worked, and no one ever noticed, she was just known for being “smart but spacey”.

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There are three subtypes of ADHD: inattentive, hyperactive or combined type. Differently from boys, who are more likely to externalise hyperactive symptoms, girls tend to internalise, showing more subtle symptoms such as difficulty concentrating, struggling with organisation, being easily distracted, regularly making careless mistakes, losing necessary items and daydreaming, along with coexisting condi­tions such as anxiety, depression, eating disorders and obsessive-compulsive disorder.

It wasn’t an easy thing to admit, and it took almost a year, but Liu finally made an appointment for an ADHD diagnosis at Shanghai Xinhua Hospital, one of the most renowned hospitals in China.

The psychiatrist she booked – a Peking University alumnus who had attended Britain’s University of Nottingham to study ADHD – seemed trustworthy, too. (Liu had also studied in the UK until 2015.)

So, on a sunny November day last year, Liu took a high-speed train for the 100km trip to Shanghai. As the warm morning sunlight crossed the window and fell on her seat, she felt confident about the coming diagnosis.

Liu currently works as a mental health counsellor in Suzhou, a part-time writing tutor for the International English Language Testing System and a publicist who remotely helps a British museum with its Chinese media operations, but when she told the psychiatrist about her trouble with paperwork, such as mixing up names and dates at her previous receptionist job, the psychiatrist – who Liu thought looked like Lisa from Blackpink – said Liu simply “might not be qualified for the job” of being a receptionist.

Liu was surprised by the jibe but kept talking, describing the treatment she had endured as a child for what she now sees as symptoms of undiagnosed ADHD, as well as the depression that followed her into adulthood.

She was once again taken aback as the psychiatrist brushed off anything related to attention deficit, since Liu seemed to have “normal social functions, and received good grades at school”.

As for Liu’s own mental-health counsellor qualification, the psychiatrist explained how she herself was “different” – meaning that unlike Liu, she had been “professionally trained” at medical schools.

“I cried from morning to night on that diagnosis day,” Liu says from her flat in Suzhou. “For the whole week I was depressed and couldn’t get over the condescending tone.”

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The psychiatrist did acknowledge Liu had some trouble focusing, but in China, ADHD is known as duōdòngzhèng (hyperactivity disorder), and therefore perceived by the general public as a mental-health disorder mainly affecting boys, and females’ symptoms and coexisting conditions are often underdiagnosed.

“In China, there are not enough psychiatrists to diagnose adults, and no specialised psychiatrists in women with ADHD at all,” says Lu Dali, a paediatric psychiatrist in Shenzhen, who took his first female adult ADHD patient in 2018. Lu explains that, to most Chinese people, women with ADHD is a new concept.

On the Chinese lifestyle app Xiaohongshu, the hashtags #adultADHDand #WomenwithADHD have had 2.6 million and 613,500 views, respectively. On Weibo, the Chinese equivalent of Twitter, with no #WomenwithADHD at all, there are only 538,000 views of #AdultADHD-tagged posts.

The vast majority of mental-health professionals in China are psychiatrists or psychiatric nurses, with few clinical psychologists and social workers, whereas in the US, ADHD can be diagnosed by psychiatrists, psychologists, paediatricians, family doctors, nurse practitioners, neurologists, licensed counsellors or social workers.

Typically, patients seek help from clinical psychologists and psychiatrists, of whom the latter can both diagnose and prescribe medications.

Chinese mental-health services are centralised in large speciality hospitals in major cities, but with a lack of specialised professionals in adult ADHD, even in Beijing and Shanghai, only a few paediatric psychiatrists are willing to take on adults for a diagnosis and offer prescriptions.

The prevalence of ADHD among Chinese adults is 2.8 per cent, and only 5 to 10 per cent of those ever receive a diagnosis, and there is no available data to show the number of women with ADHD in China.

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According to a medical map produced by Qingshan Aspie, a non-profit organisation supporting adult ADHD – as well as people on the autism spectrum disorder – half of China has no access to medical staff who can diagnose adults with ADHD.

In Beijing, where the metro population reached 21.33 million in 2022, Qingshan Aspie can pinpoint only 10 paediatric psychiatrists capable of diagnosing adults. In Shanghai (population: 28.52 million), there are three.

To patients like Liu, in Suzhou with no such resources, getting a diagnosis is a three-part mission: locate a specific hospital in another city; pick a paediatric psychiatrist; and take a high-speed train or flight to the city for the diagnosis.

When Liu learned Shanghai Xinhua Hospital was able to diagnose adults, she wasn’t aware of the second step, but after having left that appointment feeling so insulted, she later learned from an online ADHD group that her “Lisa from Blackpink” is on a blacklist of psychiatrists to be avoided.

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Nearly 3 years of Covid curbs take their toll on China’s middle class with many seeking counselling

Zou, 27, a former English tutor in Chongqing, now an administrative assistant in Yunnan province, couldn’t fit in with her family or at work because of her ADHD symptoms.

At home, mistakes such as misplacing utensils or leaving the wardrobe door open often incited arguments with her mother, who saw her daughter as lazy and careless. At work, Zou’s colleagues thought she was incompetent because, when sending out announcements in the WeChat group, she would make mistakes like messing up times and dates.

For a long while, she thought she may have a brain tumour, until she came across a post about adult ADHD on Xiaohongshu, and scored high on the self-diagnosis scale. When she talked to her mother about ADHD, she was scolded and told to stop talking about “ABCD”.

Eager to learn more, she confided in her uncle, who works at the top-ranked psychiatric hospital, Chongqing Mental Health Centre. She then asked him to help with an adult ADHD diagnosis session.

“You’re overthinking,” said the uncle. “You don’t have ADHD.”

Disappointed, she started researching on her own. But after reading more about the unpleasant diagnosis on Xiaohongshu and WeChat, she only felt more hopeless: the psychiatric system constantly failed people in need, and her family deterred her from seeking diagnosis.

“I understand that ADHD is seen as a mental disorder,” says Zou. “Being diagnosed means being a psychiatric patient, and that’s sensitive.”

According to a study published in General Psychiatry in January 2019, per capita investment from the central government for psychiatric hospitals is about US$1.07, which is far lower than US$35.06 in high-income countries during the same period.

For every 100,000 of the population, there are 2.19 psychiatric physicians (including assistant practitioners) and 5.51 registered nurses, compared with 13.06 psychiatrists and 23.49 registered nurses in high-income countries.

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As The Lancet reported on June 11, 2022, the first national survey of mental disorders in China, from 2013-15, showed that the lifetime prevalence of mental-health conditions in adults is 16.6 per cent. Yet, only 9.5 per cent of people with depressive disorders receive treatment, and very rarely (in 0.5 per cent of cases) is treatment adequate.

“It was not until the opening and reform [policies of] 1978 that more professionals began entering the realm of mental health,” says Dr Lu. “Before that, being a psychiatrist in China was degraded because people were busy making a living.”

As much as China lags in this area, it was only in May 2013 that the American Psychiatric Association (APA) officially listed ADHD under the heading of “neurodevelopmental disorders”, one that affects patients of all ages, in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a mental-health bible published by the APA and referenced by much of the world.

Two years after the changes in the DSM-5, China introduced the first diagnostic guidelines for adult ADHD in 2015. However, most paediatric psychiatrists in China are not trained nor interested in this new area. Unsurprising, then, that in the past few years, diagnosing women with ADHD has gone to social media.

On TikTok, #ADHD has more than 14 million global views. In short videos, TikTokkers list symptoms, share life routines and reduce the stigma attached with the popular opening, “People with ADHD will understand this video on a different level”.

Although a study revealed that 52 per cent of the TikTok videos they analysed under the ADHD hashtag contained misinformation, the short videos about ADHD have increased public awareness, especially of female sufferers.

“In the past two years, in particular since the start of the pandemic, many doctors are noticing an increase in patients showing up to their offices wondering if they have ADHD,” the study author, Anthony Yeung, told PsyPost in March 2022.

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In one TikTok video, a woman moves from washing dishes to doing the laundry to looking through a photo album. Eyes on the album, she thinks of the laundry basket and moves on to the laundry. In the end, she leaves the dish sponge with the clothes in the washing machine and forgets to add the detergent.

“This TikTok video truly represents my life and my girlfriend’s,” wrote Jupiter on the WeChat subscription page of Qingshan Aspie in August 2022. “I clicked the hashtag ADHD on TikTok for more related content and was alarmed. Later, my girlfriend and I decided to seek a diagnosis together.”

To diagnose adults, according to Dr Lu, psychiatrists need to review a patient’s past in detail to assess if the behaviours have persistently impaired them. But “the diagnosis is up to the individual psychiatrists in paediatrics. Most of them don’t want to take adult patients because the diagnosis takes too much time and effort”.

In the US, the Americans with Disabilities Act requires employers to provide accommodation for people with disabilities, and ADHD is included. General accommodation for ADHD include, for example, allow­ing the employee to work from home, providing a quiet workspace and taking breaks as needed.

China’s disability policies, on the other hand, apply only to physical disabilities. In China’s highly competitive work environment, having ADHD equates to incompetence and it is nearly impossible for people with the condition to seek work-related accommodation.

“I never spoke about my condition at work and I just kept it to myself,” says Liu. “People in China have poor knowledge of adult ADHD, so I don’t expect them to understand or accommodate.”

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In childhood, the prevalence of ADHD in boys is two to 2.5 times higher than in girls. Even if they show symptoms in childhood, a significant portion of girls are not diagnosed until adulthood.

Studies show 50 to 75 per cent of girls go undiagnosed, and research shows that girls with ADHD are 5.4 times more likely to be diagnosed with major depression and three times more likely to be treated for depression before an ADHD diagnosis.

In a 2022 study, “Attention-deficit/ hyperactivity Disorder in Girls and Women: Underrepresentation, Longitudinal Processes, and Key Directions”, Stephen Hinshaw, professor of psychology at the University of California, Berkeley, and his team reviewed research about women with ADHD from 1979 to 2021.

The study points out that the historical neglect of female samples in both clinical and research settings leads to the underrepresentation of women with ADHD. Until recent years, almost all research on ADHD has focused on boys and men.

“Asian culture in general expects women to be sweet, organised and attentive. But women with ADHD are contrary to these desired traits, and it’s especially hard for Asian women with ADHD to fit in the norms,” says Qingshan, founder of Qingshan Aspie, which with 43,851 followers on WeChat provides resources ranging from the medical map Liu discovered in Suzhou, to translated medical research, to the Chinese version of self-diagnostic scales, to patients’ self-narrated stories.

With a PhD in neuroscience from the University of California, Qingshan has been living with autism and understands the challenges. She knows “how hard it is to get a diagnosis in China, and I just want to offer some guidance to people in need”.

“People came to tell me, ‘You saved my life’, and, ‘Thank you for letting me understand myself better’. These are the most heartwarming moments.”

She also says that China’s zero tolerance for drugs could skew the perception of ADHD. Stimulants to treat the condition, such as Adderall, Ritalin and Concerta, are strictly controlled in China.

As online magazine Sixth Tone reported in 2021, an ADHD patient with the pseudonym Jiang Ruiyang was raided by police and detained for buying a few boxes of Ritalin online. “I’m just sick, but they treated me like a criminal,” Jiang told Sixth Tone.

“In China’s war on drugs, ADHD drugs are propa­gated as ‘smart drugs’,” says Qingshan. “The drug itself can’t make you smarter or improve your grades, but the nickname has stigmatised ADHD.”

At the end of 2022, Liu applied to graduate school in Canada. This time, she picked social work. In her spare time, she has been finding solace on Xiaohongshu, where people with ADHD can openly share experiences, insights and suggestions.

“People tend to speak up and support each other on this platform,” says Liu. “That’s very rare.”

Liu and Zou crossed paths on Xiaohongshu under a post that asked about the potential of getting an ADHD diagnosis at the hospital.

“You gotta be mentally prepared for a diagnosis at the hospital. I cried for the whole day after being humiliated by the psychiatrist,” Liu commented.

“That’s why I never sought a diagnosis at the hospital. I have a relative who works at Chongqing Mental Health Centre, but he, as a professional in psychiatry, discouraged me from getting a diagnosis,” Zou replied.

“I’m aware of the sad reality, but I need closure,” wrote Liu. “That psychiatrist vaguely admitted my problem with focusing but didn’t give me a clear diagnosis. I’m planning another diagnosis with a new psychiatrist.”

Wishing her luck, Zou typed, “You got this.”