It's estimated 7.5 million children in China are autistic, but only the rich can afford proper diagnosis and treatment. Tonight's Dateline at 9.30pm on SBS ONE looks at the story of a boy constantly tied to a chair by his impoverished parents as a desperate last resort. Reporter Amy Wang writes about her confronting experience filming the story.
It is getting late in the evening as I get out of the car just outside the Sun's family home in Xixue village in China's Shandong province. I'm warmly welcomed by Sun Bingli with a hug. She is excited to meet foreign media for the first time, for she knows it could be her only chance of finding hope for her eight-year-old autistic son, Sun Chao.
Bingli tells me that when her son was diagnosed as autistic, the doctor told her to go home and pray for a miracle. Several years have passed and all she's been able to do is watch her son's condition deteriorate from not uttering a single word to a state of constant self-injury.
The family of three live in a humble house with no proper kitchen or living area. There's a dirty mattress on the floor covered by bloodstained rugs from Chao's self-inflicted wounds. It's a depressing sight.
I enter the bedroom which the mother and son share. Sitting in the corner is a small creature with wide-open eyes and his four limbs tied to a chair. This is where Chao eats his meals. He even goes to the toilet through a hole in the seat.
His mother is not really sure what autism is or how it should be treated. This is her only way of preventing her autistic son from constant self-harm.
As Bingli unties Chao, he starts growling and punching his head. Shocked, I don't know how to react to the intensity of what is unfolding before my eyes. The heartbroken mother is in tears as she tells me of her painful daily ordeal derived out of deep love for her only child.
“He bangs himself against the wall and hits himself. He growls constantly. It's just too much for anyone. But I have no choice. He's my own child. I have to take care of him,” she tells me.
Bingli's husband, Sun Bingwei, is in charge of restraining Chao while the interview takes place. The quiet factory worker seems to have no idea how to manage his son's self-injuring behaviour. I can't help but wonder how Chao's future will turn out and what effect this constrained state will have on the boy's condition.
There are estimated to be more than seven million people living with autism in China, and experts believe there are more autistic people there than those with cancer, AIDS and diabetes combined. Yet, there is still a lack of understanding about the disorder, meaning poor diagnosis and treatment.
There is no national public welfare system for people with autism in China and a recent study by the Beijing Normal University shows that nearly thirty per cent of all families affected by autism can't afford to send their child to a special needs school. This is also the case with the Suns, whose monthly income is only 1000 RMB ($164 AUD).
Bingli says there is a Disabled Persons' Federation in her city of Laizhou which provides services for people with disabilities. The branch is an hour's bus ride from the family's village. She enquired about sending Chao there for professional help once, but was told that the staff would not be able to handle the severity of his condition. That was the end of the Sun family's pursuit of professional help.
I'm so moved by their story that I decide I have to try and help. I contact the more established Xinshengyuan special needs school in Yantai to see if the principal may lend a helping hand. Wang Haiyan agrees to meet the Suns for an assessment before deciding if the school can offer assistance.
In the two-hour drive to Yantai, Sun Bingwei tells me his biggest wish for his son is that “he stops hurting himself, he can talk, and he can look after himself.”
The meeting at the school is interrupted several times by Chao banging his head on the table. The principal seems uncomfortable with the severity of Chao's self-harming behaviour, but seeing the desperation of this family, she eventually agrees to offer a place for Chao at the school and six months free tuition. Ms Wang says there will also be some government support for the cost since the Suns are residents of the Yantai Prefecture.
The opportunity means Bingli will need to move to Yantai and attend the school full-time with Chao in the next six months. It's a big change and a huge financial commitment for the family, but the family knows they can't afford to say no.
“We'll go, if we don't go we have no hope if we go at least we have a slight chance,” they tell me.
In China, autism is known as 'the lonely disease' – after meeting Sun Chao and his family I can see why.
Watch Amy's story tonight at 9.30pm on SBS ONE, when she also visits a school providing much-needed help – and hope – to those lucky enough to be able to afford it.
