Families taking the strain of autism care

Parents forced to quit work, drain savings to provide special training for children. He Na and Zhang Zhouxiang report.

In the eyes of friends and relatives, Liu Fang used to have the perfect life - she was good looking, married to a loving husband, mother to two young children, and head of her own company.

That was until about two years ago, when she says her world fell apart.

German volunteers teach children at Beijing Stars and Rain Education Institute for Autism how to make cookies.

 

"Autism? I had no idea what it was," the 30-year-old said. "I just thought my son was a little slow in developing the ability to speak, that's all."

Her son was 2 when a doctor diagnosed him as autistic, a developmental disorder that affects a person's ability to communicate and interact with others. Since that day, Liu's marriage has verged on collapse, and she has been forced to close her company making electronic chips to cater for her son full time.

"How I wished that doctor was wrong," she said, the anguish of her family's ordeal audible in her voice. In the months following the diagnosis she tried other doctors and other hospitals, but each time the result was the same.

She now spends her days shuttling her son between their home in Beijing and rehabilitation centers, all the while seeing her healthy daughter acquire abilities that her elder brother, now 5, may never develop.

"My little girl can screw on a bottle cap easily, but I've taught my son hundreds of times and he still has no idea of the movement," Liu said with tears in her eyes. "His progress is very slow. But at least now he has begun to speak. He understands what you say and can answer some simple questions."

Despite the upheaval caused by her son's autism, she said her time spent at rehab centers has shown her she is not alone and that many parents are struggling through even worse circumstances.

Li Chuanghe's daughter was diagnosed seven years ago, at age 5. She began receiving treatment at a rehab center almost immediately and made some progress, yet not enough to prevent her from being rejected by primary schools in her native Shenyang, capital of Liaoning province.

Now 12, she is too old to receive further care at the rehab center, as it only caters to children aged 3 to 6. Like many parents in her position, Li had to give up work to care full time for her autistic child.

The 39-year-old mother said her biggest worry now is "how will she survive after my husband and I pass away?" It is a common concern among parents in her situation, especially those with teenage or adult children.

"I know an elderly couple who have a 35-year-old autistic son. He is tall and strong, and often displayed aggressive behavior," said Kuang Guifang, an expert in autism and director of psychology at Qingdao Children's Hospital in Shandong province. "They are too old to control him and are always being injured as a result.

"They tie him to the bed for fear that one day he may set the house on fire or seriously hurt someone."

Support network

Health experts estimate at least one parent in about 95 percent of families affected by autism will need to leave work to care for their child. Meanwhile, the cost of rehab training can often account for 60 to 80 percent of a household's income.

In most cases, the support available from Chinese authorities and charities to families affected by autistism is falling short. Parents tend to rely on informal support networks that develop within their communities.

Meng Fanyu, a single mother, is one example. She gave up her hairdressing business to care for her 7-year-old son after his diagnosis and, since then, has had no steady income. Paying for treatment has drained most of her savings, and that of her parents.

To make ends meet, she started working as a carer at the rehab center in Shandong province where he son receives training. Her job is financed in part by other parents who use the center.

Many parents have taken a similar path. In fact, most of the teachers, organizers and fundraisers at China's early rehab centers were relatives of autistic people, and they continue to make up a large proportion of applicants to teacher training programs run by Beijing Stars and Rain Education Institute for Autism.

"The reality is, being a special education teacher, such as at an autistic rehab center, does not command a high salary," said Sun Zhongkai, the institute's executive director. "People don't usually stay in the job for long unless there's a reason. That usually comes down to their personal experience."

Stars and Rain, arguably China's most well-known autistic support center, was founded almost single-handedly by Tian Huiping, who in the late 1980s returned from a scholar exchange program in then West Germany to be told by kindergarten teachers that they had noticed her 1-year-old son was failing to respond to people and things around him. After numerous hospital visits over the next three years, she finally heard the word "autism".

"Had Tian's son been diagnosed earlier he could have made better progress. Intervention is most effective for the children under 3," Sun said.

At the time, however, there were only three doctors in China qualified to diagnose the disorder, while public health authorities had no idea what it was.

Tian took on a mission - she started an autism research institute in 1993, and over time, decided with friends to begin helping families with autistic children. Her institute has been through many difficulties, but it has come through thanks to help from many individuals and organizations.

Tian is now semi-retired, but she still cares for her son, who is 29. Her other "child", Stars and Rain, has grown into China's largest private autistic research institute and has helped many people. In the past decade, it has trained more than 2,000 teachers and parents from more than 9,000 families, who in turn have helped Stars and Rain grow into a network of 230 branches nationwide.

Most autistic rehab centers in China are now directed by graduates of the Stars and Rain program, according to Sun. "We're happy they're using the knowledge and skills they gained here to help more families."

The training program generally lasts 10 weeks, but there is only room for 50 families each time due to limited facilities. The waiting list to enroll is about 18 months.

A shortage of resources also means the institute is only open to autistic people under 18, while Sun said his staff are most confident training children under 12. To help those over 18, Sun said the training is more complicated. The student program for ages 12 to 18 has been in the pilot stage since 2006 and has room for just seven students under the guidance of four full-time teachers.

"We're proud of having helped so many people," Sun said. "But think about the total number of patients nationwide. We, as an NGO, can only help a very small percentage of them."

The long-term focus of the training is to help autistic students to become self-reliant and learn basic skills that will boost their chances of finding work in the future.

"We can relieve some of the burden on parents by taking care of an autistic child, but hopefully we want to set that child onto an almost-normal life track."

Han Junhong contributed to this story.