Reaching out to forgotten children

PUBLISHED : Tuesday, 03 April, 2012, 12:00am
UPDATED : Tuesday, 03 April, 2012, 12:00am


At first glance, Beijing Stars and Rain looks just like any other kindergarten in the city's eastern suburbs - children's artwork is posted on the walls, toys are scattered around the centre and young children are learning to cut paper with scissors.

But look closely and there are subtle signs of differences in the children's responses and their environment. For example, when they sit outside for class and learn the word for plane, few look up or cheer like their teacher and parents at the aircraft passing overhead.

The kindergarten gate is also locked from the outside to keep the children from running into the street, and posters on the wall divide simple tasks such as eating a meal or going to the toilet into more than 20 steps.

All of the children at this preschool are autistic, a developmental condition that is little understood and poorly supported on the mainland.

A national survey in 2009 suggested there were about 280,000 autistic children in China but this figure could be as high as 1.64 million if international prevalence applies.

Stars and Rain is a non-government organisation that started out nearly two decades ago as a boarding school for autistic children but has evolved into a centre to train parents to train their children. It also offers free training courses for teachers.

Social worker Wang Peipei has worked at Stars and Rain for eight years and says some people can be surprised by the basic nature of some of the tasks that have to be taught.

'Normal people might find it hard to believe, but these [tasks such as using the toilet] are difficult tasks for children with autism.'

Wang says one of the main training approaches is to have a child practise a task repeatedly until he or she can perform it on their own. But, even though a child might master the task in practice, a change in conditions like switching from a tissue to toilet paper can be confounding.

It's just one example of the hardships parents face raising autistic children, who struggle to relate to the outside world and need constant care that is physically and mentally exhausting.

Most parents must face these challenges alone. A survey last year by Beijing Normal University's child welfare and protection research centre found that two-thirds of parents with autistic children did not have any support from the government or relatives.

Most of the families surveyed also said financial help was their most pressing need as they did not have enough income to cover the mounting training, medical and education bills. Regardless of wealth, more than two-thirds of the families were in debt, with the amount of money owed ranging anywhere from 10,000 yuan (HK$12,240) to 800,000 yuan.

'The medical care, training and nursing of autistic children is a long or even lifetime process and sometimes the children might be far worse when the rehabilitation stops. The spending on such training and medical care is like a bottomless pit,' research centre director Shang Xiaoyuan said.

Just as demanding is the physical toll on parents. Often one parent will have to stay home full-time to take care of the child and prevent them from hurting themselves. This can lead to emotional problems and sometimes depression for the carer.

'I almost collapsed at that time,' Zou Men, the mother of a 14-year-old autistic boy Kang Kang, said, recalling a period about six years ago.

Zou was the family breadwinner at that time and had to commute between her job in Beijing, and Qingdao , where Kang Kang was having training with his father. Kang Kang had no sense of danger and would walk along the balcony railings if left unsupervised. So all the windows in their flat had to be sealed. Kang Kang would also wake up in the night and scream for hours.

'I was so tired sometimes that I lay on the bed and wanted to quit. But, I couldn't quit being a mother,' Zou recalled.

Shang said many parents were pushed to breaking point. 'Many said they wanted to kill themselves or commit suicide with their children if they could not afford to take care of the children,' Shang said.

As more children are diagnosed with the condition, more parents of autistic children are demanding financial support and training from the government. They want to be assured that their children, who might need lifelong care and supervision, will be in good hands when they die.

In the last five years, the China Disabled Persons' Federation has put 30 million yuan aside for rehabilitation programmes in 31 cities. The federation has also started giving allowances to low-income families with autistic children up to the age of six. But this help is far from enough.

Wang Peipei says training at a public centre for a child between the ages of three and six costs at least 2,500 yuan a month, while the fees for private facilities - mostly run by the parents of autistic children - were way out of the reach of most people.

Even if parents can shoulder the financial burden, there are still the challenges of finding adequate education and how to plan long-term.

Often parents of children with milder conditions seek to put them in mainstream schools to help with the child's social integration. But there are practically no teachers trained to work with autistic children and the performance-oriented system discourages many schools from accepting these children for fear they will drag down the overall class results.

In the meantime, things have been improving for Kang Kang and his family. Their family income has grown and Zou can afford more training for her son. She has also managed to find a primary school willing to take Kang Kang and let a helper sit with him at the back of the classroom. The next step, finding a middle school, may be harder.

'I don't think I will be lucky enough to find a middle school willing to take Kang Kang. What will he do for studies? What will he do for a living?' said Zou.

'And, more importantly, what will happen to him when we are old and dead? He does not have the least idea about money. Even if we leave him money, he will not be able to use it.'

Wang Peipei says there are no institutes offering care for older autistic children. Her centre started training programmes for children aged 13 to 18 last year, but there are only places for six children at a time, leaving others to languish at home.

'Very few [children] are taken good care of such as regularly going to rehabilitation centres,' Wang said. 'Many are just locked up at home. Some die young.'