Helen's thoughts

I hope everybody had a lovely Christmas with friends and family. Just a few more days to go 'til we're ringing in the new year!

I wanted to expand on my last post about autism centers in China by sharing with you a note from Helen. As I've mentioned in earlier posts, Helen was responsible for my coming to China to volunteer in the first place! Helen had volunteered in China after college and met a child with autism who changed her life - Zhang Ge. Now a professor of Special Education, Helen continues to work to improve the lives of families with autism in China. She is a true expert in the field and an inspiration to many, myself included :) Thank you, Helen, for giving us a nationwide perspective on autism in China!

Helen writes:

Thanks to Cordelia for letting me share my thoughts here. While setting up this volunteer opportunity for Cordelia in China, we talked about three different options. These were three of the better known programs for children with autism in China—2 in Beijing, and 1 in Shanghai. For a variety of (good) reasons, Cordelia ended up at Stars and Rain in Beijing, which is one of the first programs for children with autism in China. It will always be one of the first, but it’s by far not the only one. Probably that and one other one, a public program in Nanjing, can both take the credit for being first, as they started almost at the same time, though the Nanjing one had started working informally with kids with autism by the late 1980s). And these days, it remains the most famous one, which means a lot of attention (and $$) go to it. Which is great for Stars and Rain, but makes me worried for other programs.

So I am grateful to have the chance here to talk about other autism programs in China, and hope readers might become intrigued and seek out opportunities to volunteer at or help other programs.

The number of autism intervention programs in China today is not a known statistic, but easily is in the hundreds—Guangzhou city alone, as of January 2008 was said to have 50 autism organizations. If you do a search on baidu (“Chinese google”) for autism, you get so many autism organizations, all over the country… Jiangsu, Henan, Hubei, Guangdong, Jiangxi, Shanxi, Shandong, etc. This phenomenon of sort of an explosion in the number of programs seems to have happened especially since the early “2000s” (2000, there still did not seem to be very many, by 2003, I was hearing of more and more, and by 2007 and on, I simply could not keep track of or keep up with the numbers!).

It is very exciting to see that autism intervention programs are popping up all over the place. Many are started by parents of children with autism, just like Stars and Rain. These are parents (often mothers) who find that there are no appropriate services for their children in their home cities or towns, so they start a program themselves. They seek information from the internet, from other programs, and do the best they can to provide effective intervention.

There is a challenge at all programs in China which is the lack of enough effective teacher training. This is much less of a problem at Stars and Rain because everyone knows about it and so all kinds of experts (often foreign, non-Chinese) want to go there and give lectures etc. But all over China, hundreds of other programs are in desperate need of appropriate and effective teacher training, so that their teachers can appropriately serve children. Part of the problem is costs—it costs $$ to bring in these professionals, these experts, and these programs do not have the grants or support that more well-known programs do.

It also takes time to build up relationships with professionals, both from China and around the world, and Stars and Rain got off to an early start. It’s a wonderful place and I have been fortunate to know them since their early years. But now other organizations are out there, and families MUST have support and intervention/educational opportunities from more than one centrally located private organization. One organization is simply not enough to serve all of the need that is out there. So the phenomenon of hundreds of programs opening brings optimism… but they need help, and part of that is what I am doing here, I hope—getting the word out that they exist! So if any readers are planning to be in China or would like more information about how to help other programs (whether in Beijing or other) cities, I hope you will contact Cordelia or me. (thefiveproject@yahoo.com) I would be happy to connect you with these other programs who are desperately trying to serve children (and young adults) with autism, and need more information, resources, and support.