Spectrum of Issues

As mother Chen Li tried in vain to distract him with toys, cries from other children echoed through the ward. Some had needles in their tongues, intended to stimulate speech. 　

Chen was weary. She and other parents had queued since midnight for a spot at the pediatric hospital in Changsha, Hunan Province to treat their children for autism. 　

Next for Lin Lin was a 15-minute session of transcranial magnetic stimulation (TMS), which uses electrodes that stimulate nerve cells in the brain – a common treatment for autism and medication-resistant depression. Lin Lin writhed and cried the whole time. 　

Afterwards, Chen put the electrodes on her forehead to experience what her infant son had just gone through. “I can’t describe it. It was really, really awful,” she told NewsChina. 　

Chen wanted it all to stop and take Lin Lin home. “Even adults can’t take it, let alone little children like Lin Lin,” she told her husband over the phone. Her husband told her Lin Lin is ill – do what the doctor says. 　

Autism, or autism-spectrum disorder (ASD), generally shows around 2-3 years old, such as challenges with social skills, repetitive behaviors, speech and nonverbal communication. While autism can be genetic – as shown in identical twins, it manifests differently according to the individual. Much about the disorder is still unknown. 　

According to a 2019 survey by Beijing Wucailu Autism Institute, 0.7 percent of China’s population had been diagnosed with a form of ASD, which includes Asperger’s syndrome. More than 2 million were under 12 years old. 　

Though there is no cure, treatments and interventions abound. Some offer evidence-based behavioral therapies. Others use pseudo-science or outright quackery. But almost all are intensive, and expensive. 　

Legitimate autism intervention often includes applied behavior analysis (ABA), a therapy based on the science of learning and behavior that is most effective with children. A major part of the ABA toolkit is reinforcement systems, such as rewarding desired behaviors with a sticker or toy, and punishing negative ones, like ignoring a tantrum. Therapists then tailor their approach based on how the child responds. 　

However, many parents like Chen struggle to get their children the help they need in China, where access to proven medical treatments, support for families and public awareness are severely limited. 　

To mark World Autism Awareness Day on April 2, the China Association of Persons with Psychiatric Disability and Their Relatives launched its “Focus on the Service” campaign, drawing attention to the country’s insufficient autism-related services, which it ascribes to a lack of government supervision and clear delegation of responsibility among authorities. 

However, over a dozen such treatments are available in China, from drugs and electro-therapies to stem cell transplants, Zou Xiaobing, director of the child behavioral center at Sun Yat-sen University’s Third Affiliated Hospital in Guangzhou, Guangdong Province, told NewsChina. 　

A search for “autism treatment” in any Chinese search engine produces pages of paid results from hospitals, many claiming to have cured hundreds of children with invasive treatments. 

　

For example, a WeChat post from Nanhai Maternal and Child Care Center in November 2021 offered a surgical procedure they claimed could cure children with cerebral palsy or autism. However, the hospital refused NewsChina’s interview request, saying that not enough children have undergone the treatment. 　

Similarly, Guangdong Sanjiu Brain Hospital advertised surgeries for children with “mental retardation” on its website. They also refused to speak with NewsChina. 　

“I don’t condone autistic children undergoing these types of surgery. They are not based in theory or evidence-based medicine,” Zou Xiaobing said. 　

Other improper interventions can be equally dangerous. In 2016, 4-year-old Jia Jia suddenly died at a rehabilitation center for children with special needs in Guangzhou. As part of the therapy, Jia Jia was forced to run 19 kilometers while wearing a jacket in the summer heat, media reported. An autopsy revealed Jia Jia had died from pulmonary hemorrhaging and encephalitis. 　

His mother Zhang Wei told media she read about the center, Heaven’s Way, in a book written by its founder Xia Dejun. A self-taught health practitioner, Xia blamed parents for autism, calling it a disease of “spoiled, rich and lazy children.” 　

During an initial consultation, the center claimed Xia’s treatment, a hodge-podge of traditional Chinese medicine and strenuous physical exercise, had cured autistic children as young as 2 years old. Jia Jia’s parents paid more than 30,000 yuan (US$4,615) for three months of therapy. 

Xia was put under investigation and the center eventually closed. Local commerce authorities told media it was registered as a “nutrition and health consultation company.” 　

A specialist in child autism who requested anonymity told NewsChina that for many institutions, autism is a cash cow. If established treatments like behavioral therapy are ineffective, they tell parents that their child is a severe case and offer more radical methods. If there is improvement, whether through behavioral therapy or natural physical development, they attribute the success to their treatment. 　

“Everyone claims to be an expert and parents never know who to trust. If they miss the window for behavioral therapy, it may be increasingly difficult for children to make progress through such treatment, as its efficacy decreases with age,” he said. 　

Even public hospitals are guilty of using scare tactics with parents. Liu Min told NewsChina that when she decided to opt for behavioral intervention elsewhere instead of the hospital-prescribed regimen of acupuncture, her doctor criticized her for abandoning treatment. Liu said she is still upset about the exchange. “I think many parents of newly diagnosed children have been intimidated by talk like that,” she said. 　

Chen Li complained the ward treating Lin Lin prescribes the same treatments for all patients – including acupuncture. She said many of the children appear fatigued and stressed from enduring the painful treatments. 　

Zhong Qing, a mother in Foshan, Guangdong Province, told NewsChina that a doctor prescribed a medicine cabinet full of expensive “brain supplements” for her autistic son Tong Tong that ultimately did nothing. She said many parents are burning through their savings on unnecessary medicines. 　

“Even if you give away everything you have to get your child treatment, you’ll probably end up worse off than when you started,” Zhong said. “Since so many parents have said that behavioral therapy is a long-term thing, just keep doing it. When you’re willing to accept your child’s condition, you’ll be able to see many things very clearly.” 

Through research, online groups and coursework, Zhong learned that many centers in China have poorly trained staff. On parents’ day, Zhong observed one of Tong Tong’s classes. The students sang a song, but Tong Tong cried the whole time. At the end, every child received candy, including Tong Tong. The therapist had positively reinforced a negative behavior. Zhong took her son home. 　

She then brought him to a reputed center in Guangzhou. She was placed on a waiting list, as open spots were rare. 　

“Parents now know that we can’t seek out treatment for our children until we educate ourselves,” Zhong said, who in the seven years since Tong Tong was diagnosed has earned qualifications in counseling and social work. “Without enough expertise, parents are unable to appraise the quality of a center’s therapy,” she said. 　

According to Zeng Songtian, president of Dami & Xiaomi Children Development Institute, some treatment centers in China only train staff one or two days before allowing them to work with children. 　

Zou Xiaobing said that some centers offer behavioral therapy, but “do not have enough personnel or time to do one-on-one sessions,” so the therapy is not as effective. “It may easily cause parents to lose confidence in the treatment. I hope authorities tighten supervision,” he said. 　

Wang Jiaoyan, deputy dean at the Nanjing Normal University of Special Education, told NewsChina that therapists are in demand, but most prefer working at government-supported special education schools because private institutions are often poorly run. 　

“Many teachers [at private institutions] cannot design scientific treatment programs and evaluate children,” Wang said. 　

“The China Disabled Person’s Federation have been rating institutions and trying to standardize operations, but the centers still have trouble meeting current requirements,” she added. 　

“We feel for the parents of autistic children who waste money, but there isn’t an alternative solution, since we have no unified way to appraise the effects of an intervention. The parents are left to make that call themselves,” Li Junfeng, executive director of the Beijing Geng Foundation for Disabled People, told NewsChina. 　

“Without a quantitative appraisal standard and effective supervision, charitable institutions like us and parents are unable to evaluate and recommend centers,” he added. 

However, Zou Xiaobing said a new technique is gaining traction in China – natural development behavior intervention (NDBI). Compared to ABA, NDBI sets interventions in natural social situations and directly involves parents, making it easier for children to adapt. 　

Either way, intensive behavioral intervention is key to autism treatment, Zou said, especially in the early stages. According to clinical psychologist Ole lvar Løvaas, noted for his work with ABA and founder of the US National Autism Association, behavioral interventions are most effective when started at 2-3 years old and sustained at 28-40 hours per week. 　

Zou agreed, and suggested 4-8 hours of one-on-one therapy every day. However, this is nearly impossible for most families in China, considering the shortage of qualified therapists and high costs. 　

As a solution, Zou suggested caregiver skill training (CST), which teaches parents and relatives fundamental therapy techniques, to help them reduce expenses. 　

In September 2015, the World Health Organization chose China as the first stop of its global CST campaign, which brought training programs to select Chinese cities, Zou said. CST has since gained support from experts, which laud its family-oriented approach and integration of familiar situations. 　

Li Jingchen, founder of Beijing Xingchen Training Center is among its supporters. By leading outings to supermarkets, hospitals and schools, Li said children get practical experience using their learned social skills rather than simply acting them out in a classroom. “Doesn’t an intervention aim to make the child’s life better?” he said. 　

During the 2022 two sessions, China’s annual parliamentary meetings, Tai Lihua, president of China Disabled People’s Performing Art Troupe submitted a proposal promoting special needs preschools, arguing that standard kindergartens and institutions fail to provide such support, which is largely overlooked in China’s education system. 　

Tai’s proposal found support in Chen Jingjie with the Geng Foundation, who warned that an overreliance on treatment centers will make it even harder for schools to accommodate autistic children. 　

At a forum on special needs education in Zhumadian, Henan Province on February 26, 2022, Zhao Meiju, a teacher at the Children Development and Education School of China Women’s University in Beijing, said most young children with autism have spent their entire lives in treatment centers and never set foot in a preschool. 　

“Many children are either undergoing rehabilitation or headed for it, and have little time for play and real interaction, which are very important for every child’s early development,” she said.