Understanding education

After establishing her kindergarten in 2005, Wang Xinhui soon discovered that her true calling was to help neurodivergent children, who are often stigmatized in society, to get the best possible start in life, Wang Qian reports.

Wang Xinhui was always a woman with a mission. Upon receiving her master's degree from Chifeng University in 2005, Wang, who had studied early childhood education, immediately sought to realize her dream of opening a kindergarten.

She couldn't have known how, a few years later, she would find her ultimate calling — one that would have such a positive impact on an often underserved section of society, shining a light of hope in the lives of families with neurodivergent children.

The autism spectrum is a constellation of neurodevelopmental conditions, which, as of the end of 2020, affect around 3 million people in China aged under 18, according to a recent industry report conducted by the China Association of Rehabilitation of Disabled Persons.

"Early diagnosis and proper treatment can help minimize their symptoms and improve their skills. My incentive for setting up the school is the hope we bring, not only to the children, but also to their families," says Wang, the school's director.

With every child with autism, the family is affected in some way, facing various challenges, from emotional stress to financial burdens, Wang says, adding that it can sometimes be a long and difficult journey.

"Once, a mother told me that her only hope was to live one day longer than her child. I could feel her heartbreak and I wanted to do something for parents like her," she says.

Established in 2009 in Chifeng, Inner Mongolia autonomous region, the Star Road Rehabilitation Center has helped to improve the quality of life for thousands of children with autism.

Every year, about 200 children study at the school and about 30 of them will be able to enroll into standard primary schools, according to Wang.

After passing the school's assessment, Wang's students can let go of their parents' hands and get into a mainstream classroom, accompanied by a special needs assistant.

In her eyes, there is little difference between children with autism and their neurotypical peers, other than a slower response time to certain stimuli.

"Among the students from my school, one with high-functioning autism is about to graduate from college. Although it is a rare case, it proves that neurodiverse people can excel in the classroom and shouldn't be counted out from the formal education system and society," Wang says.

According to WHO, some people with autism can live independently, while others require lifelong care and support.

Having studied autism for decades, Jia Meixiang, a doctor from the Peking University Sixth Hospital in Beijing, agrees that early intervention for children with autism helps improve their intellectual ability and social skills. She adds that, usually, the treatment lasts two or three years, with at least up to 40 hours a week of intervention, from therapists and parents.

School of hope

When Wang opened the kindergarten in 2005, she met a boy there who always played alone in the corner and never looked at the other children. Nicknamed Yangyang, the boy immediately caught Wang's attention. After talking to his mother, Wang learned that Yangyang was previously rejected by several schools before arriving in Wang's classroom and his mother had tried to hide Yangyang's autism to get the boy enrolled in her kindergarten.

"It was the first time I heard the term. I can't forget the mother's helpless eyes, which were full of tears and desperation," she says, adding that, although she didn't know what difficulties she had to overcome, she decided to help the woman and her son.

Learning about autism online and consulting centers for autism rehabilitation in some of China's major cities, such as Shenzhen and Beijing, Wang developed an autism intervention therapy program, covering fields of behavior, language and sensory integration.

In speech exercise, Wang tried to teach Yangyang to say "mom", but it was not easy for the boy, who was nonverbal.

"I kept repeating the word, gently trying to coax him into conversation, but most attempts failed. There was not even a response. Then, when the boy was 7, he said 'mom'. I couldn't believe my ears and asked again, he repeated the word clearly, although he still wouldn't look at me," Wang says.

It was a vivid scene that she will never forget, and at that moment, Wang couldn't hold back her tears and took the boy into her arms.

"It was then that I decided to transform my kindergarten into a rehabilitation center for autistic children," Wang says.

Yangyang studied at the center for four years and now, as a 21-year-old man, he can stay at home alone when his mother is out working, according to Wang. Since Yangyang, hundreds of children with autism have entered the school, which charges a fee of 2,500 yuan (about $344) per student every month.

"From Yangyang's story, I can tell how a child's improvement can change a family. Although my efforts are limited, their change shows that I can make a difference and that has encouraged me to help more people," Wang says. "These groups have faced so many challenges, such as high stress parent-child communication, stigmatization and financial pressure. Even a little support means a lot to them."

A 2019 study in CNS Spectrums — the journal of the Neuroscience Education Institute published by Cambridge University Press — found that parents of children with autism were susceptible to adverse effects on their employment and increased financial burdens, especially mothers. It suggests that more attention should be given to the development of appropriate therapeutic resource allocation and the alleviation of economic burdens on parents of children with autism.

In China, among more than half of the families with such children, one caregiver will quit their job in order to care for the child, and more than 25 percent of these families cannot pay the bills that stack up for their children's rehabilitation and daily care, according to the industry report by the China Association of Rehabilitation of Disabled Persons.

To guarantee her students do not drop out of school, Wang has offered free courses to some students whose parents could not afford the therapy.

Improving awareness

Since the country's first reported autism diagnosis in 1982, public awareness of the condition has increased. In 1993, Star and Rain, reported to be the country's first specialized nongovernmental autism rehabilitation center, was founded by Tian Huiping, the mother of a son with autism. By the end of 2020, there were 2,681 such organizations registered across the country, according to statistics from the China Disabled Persons' Federation.

Despite the proliferation of such schools, there are still not enough to meet the demand. By the end of 2020, there were about 100,000 autism rehabilitation therapists, industry data shows.

At Wang's center, there are students who come from all over Inner Mongolia.

The good news is that there are promising developments on the governmental level. Autism care was included in the 12th Five-Year Plan (2011-15), the first time it was mentioned in the government's blueprint for social and economic development.

In September, the National Health Commission issued an experimental guideline for autism screening among children aged 6 and under to more effectively identify those with the condition and provide them with the necessary services. It requires health authorities to test the psychological and behavioral development of every child 11 times before the age of 6.

The subsidies given to the families of children with autism vary. In Beijing, the local government gives subsidies of up to 3,600 yuan per month, in Tianjin, however, it is no more than 2,000 yuan.

"Although the money is far from enough, the subsidies can help ease the financial burden on the families of my students," Wang says.

In 2018, she was elected as a deputy to the 13th National People's Congress and called for a raise in the subsidies and for greater understanding and care within society for children with autism.

Having been devoted to autism rehabilitation for 13 years, and because the condition affects how people interact with others and the world around them throughout their lives, Wang thinks it is time to go a step further by helping people with autism integrate into society and get jobs.

"It is an issue largely ignored by society, but a great concern for parents of children with autism. The question is, when the parents grow old, how do their children live?" Wang explains, adding that employing people with autism needs continual involvement of stakeholders, including individuals with autism, families, communities and governments.

According to The Lancet, research on autism in adulthood in general is scarce and research on older adults with the condition is almost nonexistent. The journal concludes that future research, which tests interventions to promote achievable independence for adolescents and adults with autism, is needed, focusing on outcomes such as employment, meaningful and generalizable social skills, improvement of common co-occurring mental health conditions, broader functioning and well-being.

"Many people with autism can learn skills, such as how to bake, make coffee and wash cars. With the appropriate services and support, they can develop a career," she says.