Kate Reynolds takes in the sights and sounds of world autism awareness month in Beijing, China.
Hardly had I settled in my seat, unfolded the small desk from the armrest and spread out my pens and paper, than the call came. A woman at the front of the auditorium spoke a few words in Chinese mandarin and the entire audience rose to their feet and moved in unison towards the stage. I glanced quizzically at my Chinese neighbour who indicated that I was part of this mass movement. No-one was to remain seated.
As I mounted the few steps onto the stage I noted everyone was smiling and giggling, nudging each other excitedly. The overwhelmingly Chinese delegates seemed delighted to see me and many huddled around me, as if we’d known each other for some time. Then the purpose of all this action became clear; the photos began. The constant grinning took me back to the day I married and had felt for some hours after as if I’d strained my facial muscles. Then suddenly, it was over. Everyone filed off stage to their seats. I had that warm, fuzzy feeling we Brits often are embarrassed to confess.
This was all part of what was billed as the Opening Ceremony of the International Seminar on Autism: Stars and Rain’s 20th Anniversary, this being Beijing’s only facility for autism spectrum disorders. In fact, this school is one of very few resources throughout the People’s Republic of China for those affected by autism. Stars and Rain was initiated, as are so many strides in autism provision, by the mother of a profoundly autistic son.
Like many Chinese, this woman has an ‘English’ name. Hers translates as ‘Hope’. Hope Tian was to guide us through much of the conference, translating frequently and with ease between English and Chinese mandarin. Equally impressive in her linguistic abilities was Dr Helen McCabe, a north American who had worked in China with children with disabilities, largely autism, since 1992.
Autism has a devastating affect on many families even in western societies. In China, there are still more aspects to consider. The Chinese Government has for many years had a ‘one child policy’ mainly but not exclusively in urban areas, meaning that couples may only have one child. If they have more than one offspring, they pay a fine, which is greater the more children they have. In a subsistence economy, this policy has been potent. In addition to this, Chinese culture places a premium on sons over daughters.
In terms of autism, as we know, males are around four times more likely to be affected as females. Because there are no definitive statistics and few records, with many children going undiagnosed, we can only speculate autism figures in the People’s Republic. However, it is likely to be disproportionately above that of other countries because of the socio-political factors that ensure more males are born.
Lunch was provided, in the form of hot rice and various accompanying dishes. I texted an old friend who works for the China Daily newspaper, joking that I was tucking into what appeared to be canine testicles. He replied that it could well be; pig’s anus was considered a delicacy in China. I put my chopsticks down.
During the course of the conference I learned about macro and micro issues around autism. Government policy identifies disabilities in a very limited way, which does not include autism spectrum disorders. Policies and laws which do relate to special education are vague. There are no guidelines around teacher training, so those who work with autistic students often have no specialist training to support their work or develop further skills.
Stars and Rain school developed a program in the only feasible way possible to tackle a dearth of specialist teachers and an immense demand for services. The school trains the parents to be specialists. This conference was designed primarily for Chinese teachers/workers and parents of autistic children to learn about specialist teaching techniques with an emphasis on inclusion rather than the proclivity to build specialised schools where children tend to be removed and hidden from society.
Unlike most conferences, there were a number of quite profoundly autistic children in the audience. A low hum, like the sound my own son produces, could be heard throughout much of the day. A girl wandered in and out, pointing and alternately grimacing and smiling. Inclusion was not just rhetoric at this conference.
In general society, though, autistic children and those with other disabilities often are seen as shameful, as the family ‘losing face’. This is an ingrained concept and one that outsiders find hard to comprehend. In practice, it can mean that children may be abandoned or incarcerated at home.
Of course, every opening ceremony is ultimately followed by a closing ceremony. And, yes, we all clambered onto the stage for photos. This time I felt less awkward. Most people were clambering for shots with Hope Tian, Helen McCabe or one of the other speakers. Even I was asked to stand for a photograph or two. There was also a flurry of card exchanges. Fortunately I’d brought a few from the UK, which even have my photo on. Unfortunately, I looked so appalling (I like to think through jet-lag) that one student quipped “Oh, nice picture. It’s an old one, yes?”
This is one conference I wouldn’t have missed for the world. The Chinese hosts were more than accommodating, as were local people I met throughout Beijing. Being at the distinguished Peking University was an experience, with uniformed security guards and bicycles more plentiful (and often more decrepit) than those at Oxford.
I was lucky enough to visit the Stars and Rain school on the eastern edge of Beijing and see the service for younger children and their parents. Additionally I spent time in the small provision for older autistic children up the 18 years of age. I’ll certainly be taking up an invitation to return to China and see autism facilities in other parts of the People’s Republic. Until then, I feel a few awareness-raising articles coming on.
Kate Reynolds is the author of Party Planning for Children and Teens on the Autism Spectrum (2012) and the forthcoming title, Sexuality and Severe Autism (2013) both published by Jessica Kingsley Publishers.