Toddler Jia Jia’s Death Highlights Autism Ignorance
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2016-05-05 05:19:47

When Zhang Wei went to the morgue in Guangzhou and saw her 3-year-old autistic son Jia Jia for the last time, she barely recognized him. “He was blacker, thinner, with scratches all over his body,” Zhang told reporters. “He looked like a porcelain doll.”

It was a devastating moment for a mother who had only ever wanted to help her son recover from a mental disorder estimated to affect 5 to 9 million children in China.

The district government of Panyu, an area of the southern Chinese city of Guangzhou, Guangdong province, told local media on Wednesday evening it would launch an investigation into Jia Jia’s death and the autism rehabilitation center where he was undergoing treatment. He died in late April, around one week short of his fourth birthday.

The rehabilitation center is operated by Guangzhou Tiannaidao Nourishment and Health Consultancy Co. Ltd. but is known by the name “Heaven’s Way.” It’s run by self-taught health practitioner Xia Dejun, and it offers three-month residential courses involving strict physical exercise and diet to help children “recover” from autism.

Behavioral therapies are typically used to treat young children with autism. For example, occupational therapy encourages children to manage everyday activities such as dressing and eating, while speech therapy can improve their communication skills.

By contrast, Xia advocates an approach that centers on building up physical endurance. He is currently under investigation by authorities, according to the local district government.

“The child died at a hospital from an illness,” Xia said in a brief telephone conversation with Sixth Tone. “It has nothing to do with my rehab center.” When asked whether he was aware of any pre-existing health conditions Jia Jia might have had, Xia replied, “We’re not a medical institution, so I don’t know.”

As to allegations surrounding the reported use of high-intensity training techniques applied at his center, Xia said: “Ask other parents. They will say my training works.”

An undated photo of Jia Jia, the 3-year-old autistic boy who died while under care at a treatment facility.

An undated photo of Jia Jia, the 3-year-old autistic boy who died while under care at a treatment facility.

Zhang says she wants more people to know about Jia Jia’s tragic story so they won’t make the same choices she did. “I’ve been going through a lot of pain,” she says through tears during a telephone interview with Sixth Tone. “So much that I almost can’t feel anymore.”

Jia Jia’s family lives in Dandong, in northeastern Liaoning province, more than 2,100 kilometers from Guangzhou. Zhang first came into contact with Xia online via his book “Note on Rehabilitation for Children with Autism,” which describes cases of children rapidly recovering from autism after undergoing his form of treatment.

In his book, Xia claims autism is a chronic disease associated with spoiled, rich, lazy children. He says his treatment, which is based on theories of traditional Chinese medicine, involves qi, or energy in the body, and enabled a two-and-a-half-year-old child who couldn’t walk or talk, to walk within three months.

The prevalence of dubious medical cures in China was highlighted in the news recently, when 21-year-old student Wei Zexi died after undergoing a controversial treatment he found on the Web.

At the beginning of March 2015, Zhang Wei enrolled her son into a three-month program based in Yufeng Village in Guangzhou, borrowing money to pay the course fees of 31,200 yuan (almost $4,800).

“The last and only time I met Xia after Jia Jia’s death was at the rehabilitation center, when I went there to collect possessions Jia Jia had left behind,” Zhang says. “I accused Xia of causing this. He replied, ‘Wasn’t this your choice? Why are you now getting so emotional?’”

Jia Jia’s father sits holding his son’s photo under a banner that reads ‘I want my son back’ at the entrance to the autism rehabilitation center in Guangdong, Guangzhou province, May 2, 2016. Da Ba for Sixth Tone

Jia Jia’s father sits holding his son’s photo under a banner that reads ‘I want my son back’ at the entrance to the autism rehabilitation center in Guangdong, Guangzhou province. Courtesy of Da Ba

As yet the results of Jia Jia’s autopsy are unavailable. But according to a doctor’s report, the young boy hadn’t been well for some time, suffering from viral pneumonia in the weeks leading up to his death. Jia Jia’s parents have already commissioned the Zhongshan University forensic center in Panyu to follow up on the autopsy performed at Jia Jia’s funeral home to help determine the truth.

According to a report by a local newspaper, Jia Jia was subjected to a regimen of intensive physical exercise while in Xia’s care, and his movements were recorded in a daily summary.

On April 26, Jia Jia ate breakfast between 6 and 8 a.m., before starting his outdoor training: walking 10 kilometers before noon. He then ate lunch and slept until 1:35 p.m., before walking an additional 9 kilometers in the afternoon.

Chen Jie, who has been running an early intervention and rehabilitation center for children with special needs in Shanghai for more than a decade, said such therapy “doesn’t sound reliable.”

“I have never heard of Xia and his therapy, but it’s impossible for a child to do such a large amount of exercise,” said the co-founder of the Qing Cong Quan Training Center. Chen also adamantly opposes rehabilitation centers that remove children from their parents’ homes: “What children need most is the love and acceptance of their parents.”

A screenshot shows Jia Jia, with the red backpack, doing outdoor training in Guangzhou, Guangdong province, April 27, 2016. Courtesy of Da Ba

A screenshot shows Jia Jia, with the red backpack, doing outdoor training in Guangzhou, Guangdong province, April 27, 2016. Courtesy of Da Ba

In an interview with Sixth Tone earlier this year, Professor Wang Yi, vice president of the Children’s Hospital of Fudan University, said that the number of institutions that deal with autism is “not sufficient” to face the problem. Many children are forced to stay at home, Wang explained, and cannot go to public or special education schools. “We have found some autistic children strapped to chairs because parents cannot control them,” she said.

When Zhang took her son to the clinic for the first time, she recalls there was no medical check-up. Instead, she was asked to answer a few dozen questions about Jia Jia’s daily routine and appetite.

A WeChat group kept all the parents in Xia’s care group up to date. “Xia praised kids who ate more or walked more,” said Zhang. “He would say they made a little improvement. But after Jia Jia’s death, he sent a voice message to the chat asking parents to come and collect their kids. After that he never appeared again.”

In the days that followed, Zhang and her husband went to the Panyu District government office for help and advice. At first, each department claimed it was none of their business. But eventually, the couple were informed that the matter of responsibility would be discussed internally.

A statement has since been released that indicates an investigation into Jia Jia’s death will be conducted by a joint interdepartmental team.

Zhang says that in her hometown there is just one rehabilitation center for children with special needs. But when she sent her son there, her own parents were not supportive.

“They knew nothing about autism, so they didn't believe Jia Jia was sick and blamed me for taking him to a rehab facility for immoral kids,” Zhang told Sixth Tone. “Most of my friends were like that. They couldn't understand.”

After two months, the mother gave in to family pressure and searched for an alternative. But after waiting two years for a spot at clinics in Qingdao and Beijing, she was becoming increasingly desperate.

“I remember an advertisement on the website for the one in Qingdao saying, ‘Don't wait in line if your kids are more than 4 years old. They have missed the best time for recovery already.’”

Additional reporting by Wang Lianzhang. With contributions from Dong Heng and Li You.

(Header image: An autistic child undergoing training at an autism rehab center in Guangzhou, Guangdong province, March 29, 2010. Shao Quanda/VCG)