Autism School in China, Possible Mistreatment - Help?

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alwaystomorrow:

I think I can manage even if it's on the more extreme side of what my friend alluded to (she left a very wide swath of ambiguity which makes me nervous). Even if I told them that what they were doing was wrong, nothing would happen. Well, actually a lot of things would happen, mainly a set-back of my relationship with my coworkers, but nothing positive would come of it. I know that's foolish and I won't do it.

You've got a point - I never thought that simply by not hitting/pinning the kids and having things work I might be making a point that can stand on its own and doesn't even need to be said. Thanks for the perspective! And thanks for being so nice.

It is very interesting to read everyone's comments as this subject as it is dear to my heart. I've been living in Shanghai for about ten years and work with an organization, The Essential Learning Group, which provides a wide variety of educational services. We have about 80 employees in China, many of whom are Western trained professionals such as ed pscyhs, OTs, speech-pathologists, special educators, etc. We mostly worked with expats but two years ago we started a program for Chinese children with autism, taught entirely in Mandarin, and we have visited many autism and special ed programs in China. There is so much to comment on but here are a few observations:
- In China, there are so few resources for parents and educators on autism. China doesn't have hundreds of autism organizations, just a few, and there is extremely little training for teachers, let alone parents. The parents we've met are desperate for information and would do anything to help their children if they just had access to resources and knowledge.
- Except for a few examples, most of the training done by foreigners in China involves a few professionals flying in for a few days, offering training and advice, then leaving. As a broad sweeping statement, the Chinese educational system and child rearing practices are so different from typical Western practices that it is nearly impossible to see how this training can be effective. As many of you commented, ones needs to have an understanding of Chinese culture in order to train. Part of our motivation for starting our organization was to get professionals to live in China so they have a better understanding. Although I haven't met her, Helen McCabe is a great example of a professional making a long term commitment to return to China over and over to be effective. We need more like her.
- Working with children that have autism can be very difficult and frustrating if you don't have any understanding or tools to use. Faced with a screaming, non-responsive, self-stiming child will be difficult if you don't know what to do. Which then leads to hopelessness. If you've never seen people with autism make progress or achieve success then you will think its not possible. Our experience is that when you introduce some effective techniques, and children respond, then parents and educators become so much more hopeful and see what is possible.
- My bias, which I fully admit, is that our techniques for addressing autism are much better and developed in the West. China has had very little exposure to techniques like visual schedules, PECS, TEACCH, ABA, Leap, sensory diets, social stories, speech-therapy, and so on. My view is that China needs people on the ground teaching parents and educators how to integrate these techniques into homes and classrooms. The training has to be hands-on, not lectures.
- I recently heard a story about an ABA training that was done in Shanghai for parents of children with autism. What I heard was that the presenters spent a few days teaching about ABA with their main point being that only trained BCBA therapists should do ABA. Last I checked, there was only one, maybe two BCBAs in a country of over 1 B people. I know people that think only trained SLPs with CCC-SLP should do speech-language communication training. In China, speech therapists isn't even recognized as a profession. My point being that we need to find additional ways to get training and resources to people while we wait for institutions to catch up.
- Last summer I had lunch with the retired founder of Stars and Rain, and her adult son with autism. One theme that came up over and over is the need for evidenced based therapies. She told us story after story of herbal remedies and acupuncture that bordered on abusive. The ironic things about this wonderful woman is that there is no place for her adult son to go - he goes to a sheltered workshop meant for much lower functioning individuals and doesn't have access to resources for adults with autism.
- Surprised no one mentioned China's one-child policy which puts even more pressure on families.
- Also, just want to clarify that we don't rely on any government or charitable money to provide our services.
- I could go on and on but that's it for now You are all welcome to come visit!

I spent time over in Mainland China and did much better than most of the Westerners around me for reasons I won't get into here.

Anyway, Chinese school officials smack every kid, not just the autistic kids. You won't get anywhere trying to tell them what to do. Kids in America these days are tyrants, so maybe it does the Chinese kids some good. I dunno. Hard to say that Chinese kids--autistic or otherwise--grow up that much more emotionally damaged than American kids (seeing as we have the highest rate of psychiatric drug usage in the world). So just deal with it, and try to fit in. Being a Westerner doesn't mean you know more about anything. It probably just means you are more loud about expressing your ignorance and stupidity than a Chinese person would be.

My impression of Chinese culture living there for 18 months was that China is very HFA friendly and very LFA-unfriendly, basically a mirror image of the United States. Which completely sucks for American HFA kids and Chinese LFA kids, but yeah, no country is perfect.

I LOVE Chinese culture. Why? It's a culture where they value the ability to SHUT THE f**k UP. Something I do very well naturally and that gets me in trouble among the loud-mouthed c***s in America.

Being Chinese and growing up in Western culture, I kind of know both sides to the issue.

Generally, no matter where you live, at least a few people have responded to me this way. The specialists at my school would say you won't be able to grow up and get a job. No matter where you go, "disability" is disparaged upon.

Tyri0n:
If you've read the whole thread already, I'll be doing some repeating here, but as I said earlier in the thread what I've learned from this experience is that most people don't read the whole thread and shouldn't be expected to, so I'm going to repeat myself a bit. I know kids get smacked. I've been smacked myself by a Chinese teacher (and did not freak out on him, just apologized) and I get that it's a pretty normal thing and there are cultural differences. It's not something I like, but I'm not going to say anything (outside of a forum in English - I code switch culturally when I switch languages unless there are outside conditions, so right now what you're getting is American culture-me who is a lot more straightforward, among other things, than Chinese culture-me) about it. It's whatever my friend alluded to that concerned me, because it was a wide range of ambiguity that didn't sound like it was just smacking and sounded different from what happens in regular schools (depending, of course, on where those schools are located, but it sounded different from the other schools in the city I was in, and I'd been to several).

I am seriously repeating myself here, but I will not tell people what to do. That is a dumb idea. It will not work, it's disrespectful, and it's just not going to happen. Period. You want to know more background, read the rest of the thread.

I love Chinese culture, too, albeit perhaps not for that reason. When people don't talk to you about things, sometimes that means that you just don't know what you're doing wrong until things get really bad, and without feedback it's hard to fix issues. There are up-sides to that, too, of course, but as a bumbling American I tend to run into the down sides more than the up-sides. Like if no one had replied to this thread and given me negative feedback (which the first post accomplished, by the way), I wouldn't have known the importance of background and narrative when posting. Only in China if I mess up (say, by leaving my side of the room messy and driving my Chinese roommate nuts) no one's there to tell me what I've done wrong, so unless I figure it out for myself I can't fix it. As for things I like about Chinese culture, I like the way relationships work over there - not talking about guanxi or anything, but, rather, the way friendships work. I like the emphasis on maintaining harmony, the theory of the mean, the emphasis on the importance of family...and the list goes on. There is no way I can think of to convince anyone of that, though, except for meeting and talking in person or having you all see me in China, which obviously isn't going to happen.

I don't think that being a Westerner means I know more about things. I mean, it does mean I know Western things, etc, but it doesn't make those things inherently superior. I do think I know more about successful people on the autism spectrum than the employees that worked there, just because I got the impression they'd never met or even heard of any. But that's not an East vs West issue, just a having met people issue.

You've got a point. From the time my sister was born all the way up to present day, people have always been telling us what she couldn't do. They've also consistently been wrong. Just last year a psychologist told us she'd never be able to live on her own or go to college...and she's acing both. Although I think the problem is still the same in both countries - they just haven't met people who break those misconceptions. I think that's starting to change, though, with more popular awareness in the US - movies like Temple Grandin and Adam, plus TV shows like the all-new The Bridge (I'm too afraid to watch it, but from what I heard it was supposed to be a good portrayal) may not show the full picture, but at least through them people are likely to be exposed to it. Plus there's been a wave of students on the spectrum here to move through the school system and with each wave that passes, I feel like more misconceptions get dispelled. Not saying it's great, but at least there's some progress. Over there, I think that process is a bit further behind, so odds are even more against awareness of the fact that people on the spectrum can be successful. Just my thoughts on the subject.

China ELG:

You brought up so many points (good ones, I might add), I wasn't sure how to address all of them, so I simply copied your post into this one and put my responses under each bullet point.

- In China, there are so few resources for parents and educators on autism. China doesn't have hundreds of autism organizations, just a few, and there is extremely little training for teachers, let alone parents. The parents we've met are desperate for information and would do anything to help their children if they just had access to resources and knowledge.
* Yeah, I'm starting to think the place I'm at wasn't actually an official autism organization. I realized there was little training for teachers and not much for family, which is why I was thinking that talking to families might be good if they were up for it.
- Except for a few examples, most of the training done by foreigners in China involves a few professionals flying in for a few days, offering training and advice, then leaving. As a broad sweeping statement, the Chinese educational system and child rearing practices are so different from typical Western practices that it is nearly impossible to see how this training can be effective. As many of you commented, ones needs to have an understanding of Chinese culture in order to train. Part of our motivation for starting our organization was to get professionals to live in China so they have a better understanding. Although I haven't met her, Helen McCabe is a great example of a professional making a long term commitment to return to China over and over to be effective. We need more like her.
*Agreed - that was a really good idea to have them get some cultural background first.
- Working with children that have autism can be very difficult and frustrating if you don't have any understanding or tools to use. Faced with a screaming, non-responsive, self-stiming child will be difficult if you don't know what to do. Which then leads to hopelessness. If you've never seen people with autism make progress or achieve success then you will think its not possible. Our experience is that when you introduce some effective techniques, and children respond, then parents and educators become so much more hopeful and see what is possible.
*Agreed. I just wish I knew the effective techniques to introduce. What training would you say is best/most needed to help over there?
- My bias, which I fully admit, is that our techniques for addressing autism are much better and developed in the West. China has had very little exposure to techniques like visual schedules, PECS, TEACCH, ABA, Leap, sensory diets, social stories, speech-therapy, and so on. My view is that China needs people on the ground teaching parents and educators how to integrate these techniques into homes and classrooms. The training has to be hands-on, not lectures.
*Agree that we certainly have quite a head start developing therapies/techniques here.
- I recently heard a story about an ABA training that was done in Shanghai for parents of children with autism. What I heard was that the presenters spent a few days teaching about ABA with their main point being that only trained BCBA therapists should do ABA. Last I checked, there was only one, maybe two BCBAs in a country of over 1 B people. I know people that think only trained SLPs with CCC-SLP should do speech-language communication training. In China, speech therapists isn't even recognized as a profession. My point being that we need to find additional ways to get training and resources to people while we wait for institutions to catch up.
*I also think that this reinforces your point about how people conducting trainings need to be familiar with the culture and situation on the ground in China. Any suggestions on additional ways to spread training/resources? Are there support groups of parents, for instance? And if so, would you view them as a good thing for spreading training/resources/information?
- Last summer I had lunch with the retired founder of Stars and Rain, and her adult son with autism. One theme that came up over and over is the need for evidenced based therapies. She told us story after story of herbal remedies and acupuncture that bordered on abusive. The ironic things about this wonderful woman is that there is no place for her adult son to go - he goes to a sheltered workshop meant for much lower functioning individuals and doesn't have access to resources for adults with autism.
*Completely agreed about the importance of evidence based therapy and more resources for adults no matter where they fall on the spectrum (I believe that with regards to the US, too).
- Surprised no one mentioned China's one-child policy which puts even more pressure on families.
*Someone did mention it, to say there was no way neglect would be occurring, but that's about it. I read in one of the resources a member sent me, though, that parents with disabled children are able to have an additional child - does this hold true?

Thanks for your thoughts!