Often misinterpreted and misdiagnosed, parents seek answers for children, themselves

(LU PING / CHINA DAILY)

In a Beijing primary school, 8-year-old Shushu (pseudonym) sometimes stands up in the middle of lessons, climbs on doors, or balances on his hands near the teacher’s desk. When asked why he does these things, he simply says, “I just wanted to move.”

To classmates, his behavior can be confusing; to his mother, 37-year-old Xiao Jiecun (pseudonym), it reflects her son’s different way of processing the world.

Shushu has severe attention deficit hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD), yet he is also curious, playful and highly sensitive, with his musical talents including the gift of perfect pitch.

The transition from kindergarten to primary school brought challenges. Structured routines and long lessons clashed with Shushu’s impulses and sensitivities.

Everyday sensory stimuli like noises, lights or textures can trigger reactions, which teachers often misread as defiance, leaving him socially isolated and occasionally bullied.

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A large cohort study published in 2013 in PubMed, based on the GINIplus and LISAplus German birth cohort studies, found that children with ADHD symptoms were about three times more likely to have reading or spelling difficulties and 2.6 times more likely to have trouble with math.

For Xiao, the years before diagnosis were the most difficult, with frequent school calls disrupting her demanding work.

“My job is exhausting, and I’m always on edge … Sometimes it feels like I’m walking through a long, dark tunnel, not knowing what’s coming next,” she said.

Over time, she began to step back from work competition, prioritizing her son’s emotional well-being over achievement. “I don’t need to be a perfect parent,” said Xiao.

By the second grade, a teacher suggested there might be a deeper issue, leading to a clinical diagnosis of ADHD with ODD tendencies.

A nationwide survey of 73,992 Chinese children and adolescents age 6 to 16 published in 2025 in the journal Annals of General Psychiatry, found the prevalence of ADHD was 6.4 percent. Just over half of those diagnosed exhibited at least one comorbid psychiatric disorder, such as ODD or anxiety disorders.

The diagnosis brought clarity, but challenges remained for Shushu’s mother.

To support Shushu, Xiao hired a shadow teacher who accompanied him during morning lessons, helping with his attention, emotional regulation and social interaction. The impact was immediate.

While challenges remain, Xiao has learned to prioritize his well-being over constant achievement.

“He may never fully conform, but that’s OK. I believe he will find his place. My only hope is that he avoids secondary conditions like anxiety or depression. No matter what, I will always support him,” said Xiao.

Shadow teachers

According to the 2024 Statistical Monitoring Report of China’s National Program for Child Development, there were about 916,000 special education students in China, with approximately 62.3 percent attending regular schools.

In China, where formal accommodations for neurodivergent children remain limited, the shadow teacher has emerged on the margins of the education system.

Luo Yutong, 32, based in Hefei, Anhui province, has worked in special education for 11 years, including more than five years as a shadow teacher in mainstream classrooms.

Unlike the common perception of shadow teachers as temporary aides, Luo sees her role as structured and preventive, bridging gaps between children, families and schools.

Luo entered the field in 2014 while living in Shanghai, and over the years has supported children ranging from preschool age to upper primary school, focusing on classroom participation, emotional regulation, and social integration.

“I have witnessed children who once collapsed emotionally in class gradually learn to sit through lessons, follow routines and eventually enter primary school independently. With intervention and without intervention, the difference is very clear,” she said.

Using positive behavior support, she analyzes triggers behind disruptive behavior and replaces them with structured routines, visual cues and collaborative strategies across classrooms and homes.

“Many behaviors are not intentional misbehavior, but they are communication,” said Luo.

Equally important is collaboration. Luo works closely with classroom teachers to clarify learning goals, adapt expectations and avoid unnecessary confrontation. She also maintains frequent communication with parents, sharing observations, progress, and strategies so support remains consistent across school and home.

In some cases, she facilitates peer interaction by guiding small groups to model inclusive play, allowing social skills to develop naturally.

The 2024 China Statistical Monitoring Report showed there were about 81,000 full-time special education teachers nationwide, indicating some progress in building special education service capacity, but still limited.

“Shadow teachers operate without standardized qualifications, clear professional recognition, or stable institutional backing. We are often seen as a service rather than educators,” said Luo.

She said the work is not about fixing children, but about creating conditions in which they are no longer pushed to the margins. “Every child has a spark and our job is to notice it, protect it, and let it shine,” she said.

Sharing the load

Yet even with professional support, not every family finds existing arrangements enough.

For Mo Ning, a 41-year-old e-commerce professional who previously lived in Beijing, years of navigating special education resources eventually led her family to make a more radical choice. Two years ago, she moved with her children to Vienna, Austria.

“The decision was not driven by idealism or a belief that another country could ‘fix’ my child, but by a sense that my family had reached the limits of what we could carry on our own,” said Mo.

Her eldest son, now a primary school student, was diagnosed with both ADHD and autism spectrum disorder (ASD). He was highly curious, quick-thinking, imaginative, and able to focus deeply on topics that interested him, yet struggled with organization, time awareness and task initiation. At school, these difficulties often translated into constant disruption, social misunderstandings and negative evaluations.

“He wasn’t refusing to cooperate, but he was receiving too much information at once and didn’t know how to turn it into action,” she said.

At the age of four, her son was diagnosed with ASD, a label the family struggled to accept and fully understand. When he entered primary school, the mismatch between his needs and classroom expectations became more acute. He was later diagnosed with ADHD, a common co-occurrence, as studies suggest that nearly half of individuals on the autism spectrum also meet diagnostic criteria for ADHD.

Mo described those years as a period in which her entire life revolved around compensating for what the system could not absorb. “Homework had to be re-taught minute by minute, attention constantly redirected. Every day felt like a battle,” she said.

Over time, Mo realized the real issue was whether any system existed where the burden of adaptation did not fall almost entirely on the family.

During this process, Mo herself sought clinical assessment and was also diagnosed with ADHD. Rather than feeling defeated, it helped her recognize that many conflicts with her son were not moral failures or parenting flaws, but the result of two neurodivergent nervous systems under pressure.

In Austria, Mo found that while the challenges did not disappear, schools and medical institutions tended to begin from a shared assumption that children like her son require additional support, rather than correction.

“For the first time, I felt that I wasn’t fighting alone, as I didn’t have to constantly prove that my child needed help. The system already understood that,” said Mo.

Long-term management

Gao Qian, a pediatric psychiatry physician based in Shenyang, Liaoning province, said ADHD is the most common neurodevelopmental disorder in childhood, and one of the most misunderstood.

Children are typically brought to her clinic for three reasons: school-related behavioral disruption, emotional problems, and, by parents who notice persistent problems with their child’s attention or homework.

Over the past decade, ADHD-related clinic visits have multiplied several times, driven by heightened academic pressure, changes in educational environments, and improved public awareness.

“The incidence itself hasn’t changed much, but the consultation rate has. Medication can help around 80 percent of children, yet only about 10 percent are accurately identified and barely 1 percent receive standardized treatment. ADHD is a chronic, even lifelong condition that requires long-term management,” she said.

Gao said ADHD is highly inheritable, with genetic factors accounting for about 76 percent of risk. Yet despite being common and treatable, many children remain undiagnosed or receive inadequate care.

Diagnosis relies on detailed developmental histories and multi-setting assessments, structured interviews lasting 30 to 60 minutes, and reports from at least two different settings, typically home and school.

“Ten minutes is never enough, so I limit first-time consultations to six or seven patients a day, and often have to address not only the child, but anxious mothers, denying fathers, and caregivers carrying most of the burden,” said Gao.

Public concern about medication remains widespread. Gao does not rush families into treatment decisions. Instead, she provides extensive education, including recorded lectures explaining causes, prognosis, and treatment options, allowing parents time to reflect before deciding. Current clinical guidelines recommend medication combined with behavioral intervention as first-line treatment, but Gao stresses that medication is not a cure-all.

“Medicines can improve attention and impulse control, but they cannot repair parent-child relationships or teach social skills. What cannot be chosen is to ignore the condition,” she said.

ADHD, Gao emphasized, is not limited to childhood. Adult prevalence is estimated at 2.5 percent, yet many adults remain undiagnosed, misclassified as anxious, depressed, or having personality disorders.

The 2023 Chinese Expert Consensus on Diagnosis and Treatment of Adult ADHD noted that 30 to 50 percent of children with ADHD continue to experience symptoms into adulthood, often with more comorbidities and broader functional impairments.

Meaningful change

While medical professionals stress that ADHD requires long-term, evidence-based intervention, many families soon discover that a clinical diagnosis is only the starting point. What follows daily schooling, family dynamics and a child’s sense of self often unfolds far beyond the consulting room.

For Rui Qiu, a 48-year-old ADHD coach known online as Jun Ma Rachel, that gap between diagnosis and everyday reality was deeply personal. Her son was diagnosed with ADHD in 2020, a moment she describes as both shocking and clarifying.

“If your child falls into the water, the first person who can save him is the one closest,” she recalls a teacher once saying. “I didn’t want to wait for a rescue team. I chose to jump in myself.”

Originally trained in corporate and university coaching, Rui decided to become an ADHD growth coach in 2021. Before that, she sought professional help through hospitals and parenting programs, including specialized training at Shanghai Children’s Medical Center.

Yet she soon realized that brief clinical consultations, even when combined with medication, could not fully address the complexity of her child’s daily struggles. Repeated medication adjustments and side effects affecting sleep and appetite left the family exhausted.

“What doctors can offer is important, but limited. They treat symptoms. What children really need is an environment that understands them at home, at school and in society,” said Rui.

As academic pressure intensified, Rui chose to pause her son’s formal education for a year, reframing the decision not as “dropping out” but as a “gap year” to support his development.

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The decision later evolved into a broader experiment. Together with several families facing similar challenges, she helped establish a small, noncommercial education mutual-aid setting, supported by experienced teachers and a retired school principal. Children lived, learned and interacted in a shared environment where academic subjects, daily routines, physical activity and emotional regulation were integrated rather than separated.

Rui began to observe subtle but meaningful changes in her son. His emotional outbursts became less frequent, daily routines more stable, and his sense of self-worth gradually rebuilt. Instead of being constantly corrected or compared to other children, he started to take initiative in areas he enjoyed, from physical activities to hands-on tasks.

“The biggest change wasn’t academic. When the environment fits, children stop seeing themselves as ‘problem’ cases and begin to build confidence on their own,” said Rui.

In her view, ADHD is not something to be cured, but understood and adapted to, with medication only one part of a broader support system.

Drawing from both professional coaching and motherhood, Rui emphasizes that changing a child begins with changing the environment around them.

“Medication can be part of the solution for some, but it is never the whole answer. This is not something to be cured. It’s something to be understood, adapted to, and eventually transcended,” said Rui.

 

Contact the writer at sunnyu923@163.com