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    How Fear and Stigma Are Hurting China’s Kids With ADHD

    Many Chinese parents are afraid of putting their children with ADHD on medication. But the costs of not getting treatment are often far greater.

    SHANGHAI — Feng Xue, a primary school teacher, has confronted many challenges in her 12-year career. She never expected facing down an organized protest to be one of them.

    That, however, is the situation the 34-year-old found herself in last month, when a gang of angry parents delivered a signed petition to her school’s leafy campus in suburban Shanghai.

    The group, which numbered in the dozens, had one demand: the expulsion of a naughty 7-year-old.

    The boy had been causing trouble for months, picking fights, giving his classmates mean nicknames, and interrupting his teachers. He had recently been diagnosed with attention deficit hyperactivity disorder (ADHD), but his parents had refused to put him on medication.

    “The boy’s parents had declined to comply with the suggested treatment plan,” Feng tells Sixth Tone. “The other parents couldn’t tolerate the classes being ruined by an out-of-control child.”

    Similar parental conflicts have been erupting at schools across China in recent years.

    As the country’s education system gets evermore competitive, parents and teachers are demanding total concentration from students even at a young age. But this is running up against the reality of millions of children with ADHD still not receiving any treatment whatsoever for their conditions. 

    ADHD is a common childhood neurodevelopmental disorder that can cause children to be hyperactive, behave impulsively, and struggle to mentally focus for long periods. It’s estimated that over 6% — or around 23 million — kids in China have the condition.

    But only a tiny fraction get help. In China, mental health issues are still poorly understood and carry a heavy social stigma, leading to rock-bottom diagnosis and treatment rates.

    Over 90% of the country’s childhood ADHD cases still go undiagnosed, according to government estimates. And even when kids are diagnosed, only one-third receive some form of medication or behavioral therapy. In the United States, by contrast, three-quarters of children with ADHD are being treated.

    The result is that children with ADHD are often simply dismissed as “bad kids.” Many are socially ostracized by their classmates, forced to study alone, or even kicked out of school — causing them lifelong psychological harm

    It’s an issue that causes Wang Yu, a pediatrician at the Children’s Hospital of Shanghai, intense frustration. She often hears about incidents similar to the clash at Feng’s school, she says, and wishes society’s attitudes toward mental health could evolve.

    “Treating ADHD can have such clear benefits — our efforts can bring huge changes,” says Wang.

    Though public awareness of ADHD has risen over recent years, many families still fail to recognize their children have the disorder, according to Wang. The health sector has been trying to boost people’s knowledge by holding an ADHD awareness week each April, but there’s still a long way to go.

    “Parents used to believe children who often get in fights are just naughty and those who can’t get high scores in academic exams are stupid,” says Wang. “They have to understand there are other possibilities like ADHD.”

    Other families have heard of ADHD, but are reluctant to allow their children to receive treatment. In many cases, they fear their kids will face stigma from teachers and classmates if they’re officially diagnosed with the disorder.

    “ADHD is classified as a mental health disease,” Wang says. “With such a label, families may worry their children will be viewed differently.”

    Another problem is widespread resistance to putting children on medication, according to Wang. Many families hold fast to the traditional Chinese belief that all drugs are more or less harmful to the body.

    Medication, however, is normally essential. Most kids with ADHD aged between 6 and 12 require a combination of treatments, including medicine, behavioral therapy, and social skills training. Around 90% of patients in that age group need to take pills, Wang estimates.

    Chinese doctors have to use varying tactics to convince patients to take tablets. One physician told Sixth Tone privately that he orders people not to look too hard at the list of side effects on the bottles he prescribes.

    “I just tell my patients’ parents that these medicines are safe to take,” Wang adds. “The side effects are very rare.”

    Wang also spends time giving lectures on ADHD at schools around the city. Her key message is always the same: Families should stop thinking about the risks of treating a child’s ADHD, and consider the costs of not doing so.

    “If we don’t intervene at an early stage, the problems can get worse — the kids can develop emotional problems,” says Wang. “Once they have such combined symptoms, the difficulties in treatment will definitely increase.”

    But changing social attitudes takes time. Wen Xiaoyan, a mother of a third grader who lives in Shanghai, was forced to pull her son out of a desirable public school last year. As was the case at Feng’s school, a group of parents had been repeatedly complaining about the child’s disruptive behavior.

    “It was huge pressure,” says Wen. “I felt so stressed and my son felt frustrated as well — he didn’t mean it, but when there were challenges he had to deal with, he’d lose control.”

    Wen’s son had been misbehaving for years, but it wasn’t until after he switched schools that the mother realized he might have ADHD. Whereas children with the disorder often fall behind academically, the boy did fine in exams. “We assumed he was just being naughty,” recalls Wen.

    When a doctor diagnosed her son with ADHD in October, however, Wen quickly decided to accept the recommended treatment plan. The medication’s potential side effects — which can include loss of appetite, gastrointestinal problems, or in very rare cases epilepsy — didn’t worry her too much, she says.

    “You have to weigh the benefits and possible consequences,” Wen says. “I chose to follow the doctor’s advice, because the disease has caused him and our entire family stress and pain.”

    Wen’s son has now been taking medication for six months, and his mother has been delighted with the results. He’s experienced no physical complications, and he’s gone from strength to strength at his new school — a private institution in the suburbs.

    “The progress my son has made is obvious,” says Wen. “He’s now vice monitor of his class. He can often get full marks in exams.”

    Yet the mother is still careful to keep her son’s condition quiet. Though she’s fiercely critical of “irresponsible” parents who fail to get treatment for children with ADHD, she doesn’t want her son’s classmates to find out he has the disorder.

    Fear of the social stigma associated with mental health issues also eats away at Cai Lingyuan, a Shanghai-based mother whose son was diagnosed with ADHD last year.

    When Cai took her son to see a doctor last year, she decided against going to the Shanghai Mental Health Center — the city’s most authoritative and best-resourced institution for treating mental health disorders including ADHD. Instead, she went to a hospital pediatric department. 

    “I can’t risk the possibility of my son considering himself mentally sick,” Cai says. “Just imagining stepping into the mental health center with my son makes me feel very uncomfortable.”

    Another reason for going to the pediatric ward was protecting Cai’s family from malicious gossip. Cai was terrified her child might reveal he had been to the mental health center, causing others to stay away from him.

    “Kids are honest — they might share this experience with their classmates,” says Cai. “What if their classmates tell their parents about it, and the adults overinterpret the information?”

    Parents often tell their children’s teachers about ADHD diagnoses, so the teachers can give the children special attention. But Cai has also decided against doing this, as she’s heard stories about teachers failing to keep these conversations confidential.

    “To persuade other students who potentially have ADHD to visit the doctor, a teacher might share the positive treatment effects of a diagnosed student,” says Cai. “That’s why I’m particularly cautious. I’m worried my son will be used as an example for others in the future.”

    Cai has also refused to give her son the medication prescribed by his doctor so far, even though it has been over a year since his diagnosis of mild ADHD.

    “I’m afraid if we start to give him medication, he’ll become very dependent on it,” she says. “I hope as he grows, his problem will just gradually disappear.”

    Wang, the pediatrician, insists this fear is completely misguided. Oral medication taken in small doses will never make children addicted, she says.

    “Addiction becomes possible only when large doses of the medicines are injected deep into the muscles,” Wang says.

    The fears of parents like Cai are putting further strain on Shanghai’s overcrowded hospitals. The city’s health system, which is one of the best in the country, is already stretched due to the millions of patients who travel to Shanghai from all over China for consultations.

    At the Shanghai Mental Health Center, it normally takes up to two months to see a specialist, according to Xu Yun, a specialist at the center. Cai had to wait four months for an appointment at the general hospital.

    Doctor Wang estimates as many as 70% of her patients don’t live in Shanghai. Many have already seen ADHD specialists in their hometowns, but want a second opinion before putting their kids on medication.

    “They travel all the way to Shanghai to visit us just to confirm if these medicines recommended by their local doctors are fine to take,” says Wang. “They still feel hospitals in bigger cities are more reliable.”

    A mother from the southwestern city of Chengdu, who requested anonymity for privacy reasons, took her 7-year-old son to see doctors in Shanghai and Beijing — a 5,000-kilometer round trip — before finally deciding to give him pills for his ADHD last year. “I felt I had to take action then,” she says.

    For many parents, however, even the reassurances of a top specialist aren’t enough.

    Feng, the teacher, says the dispute at her primary school remains deadlocked. The school has chosen not to expel the student with ADHD, but they have asked his parents to keep him at home until he becomes more emotionally stable — a common compromise in such situations.

    According to Feng, there doesn’t appear to be an easy way to resolve the situation. The school has been urging the boy’s parents to relent and allow him to receive treatment, but they refuse to back down.

    “We want to treat him the same as the other kids,” says Feng. “But there’s only so much we can do.”

    Additional reporting: Zhang Shiyu; editor: Dominic Morgan.

    (Header image: Elena Peremet/Moment/People Visual)