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Autism and “Normal” in China.

China child By Cordelia Ross

I was aware that China was a traditional, collectivistic, developing country before I arrived here, but I had no idea what that would mean for people with autism and their families. Turns out, there is a very prominent effect of culture on the view and treatment of people with autism.

In China, there is no tolerance for anything “abnormal”.

At school, individuals’ unique talents are not sought out and encouraged. In fact, there is no such thing as “the individual”. Unlike in the United States, where personal interests and talents are discovered at an early age and nurtured, everyone in China is expected to perform at the same level. There is no special class for “math people” or “art people” or “music people”. Everybody must be equally good at math, at art, at music. Differences are frowned upon.

Which is why children with autism are not accepted into kindergartens or schools. If they can’t work in the classroom like the other students, they must not be in the classroom. If they stand out in any way, either by their appearance (students in China follow strict rules for uniforms, shoe color, even hairstyles) or their behavior, they are seen as a distraction to the other students and hinder their learning. Even the few special education schools that do exist in China cater to the hearing- and visually-impaired and those with intellectual disabilities; they lack the knowledge and skills to educate children with autism. Autism (孤独症, literally “the loneliness disease”) is still a new term in China, and there is very little awareness of the condition. Children with autism are therefore rejected from both the mainstream and special education system. Parents see this as a complete failure; without education, can their kids still become functioning members of society?

There is an important cultural element at play here. In China’s collectivistic culture, everyone must conform to the norm and contribute to society at large. Parents of autistic children believe that their children 1) don’t fit in, and 2) cannot contribute to society. But who is and what is really “normal”? And what exactly constitutes contribution to society? That’s another discussion in and of itself.

Because they cannot attend school, staying home becomes the only option for most children with autism in China, putting tremendous pressure on their parents. Fortunately, because extended families in China tend to live together, children with autism are often cared for by their grandparents. However, they may still lose all chances of developing any potential talents that they may have had.  Furthermore, the Chinese government does not provide insurance or any form of assistance for the disabled. This is why parents are so intent on “normalizing” their children. Society does not accept their children’s stereotypies and atypical behaviors, so parents have difficulty accepting them as well. 

I have been a volunteer at Stars & Rain for just over two months now. Founded in 1993, Stars & Rain was the very first autism center in China. It is unique in that instead of educating the children themselves, it educates their parents through an 11-week intensive training program. Because of the inadequate provision of care for autistic children in China, it would be impossible to directly educate more than a fraction of the autistic children in the country. To get around this problem, they focus on giving parents the skills to educate their own children.

Working at Stars & Rain has been an incredibly eye-opening experience, and I have met many inspiring children and teenagers, their teachers, and their families. I am looking forward to sharing my observations and their stories with you.  Thank you, Age of Autism, for giving me this opportunity.

Cordelia Ross is a recent Middlebury College graduate with an interest in autism. She spent several months volunteering at the Beijing Stars & Rain Education Institute for Autism and had the opportunity to work with children with autism in China and listen to their families' stories.

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I am of Chinese descent. First generation here in the USA. My 1st and 4th sons were diagnosed with autism and my oldest also had seizures in addition to bipolar like behavior. It has been a living hell to get my family to even consider there was anything abnormal about them. I got very little support from them. There is always this background talk from my mom that I must have done/am doing something wrong or that I am not a good mother because they are not normalized enough or because I am complaining about it or making things up. As a result I have very little contact with my family. I am hoping that modern Chinese is better but my brother now lives in China and his attitude has completely changed since he started living there. He just got into an arranged marriage with a woman there and planning to have children. I hope the child is "normal" for its sake as I think the family would just put their heads in the sand.

From Richard E. Lewis Gold Coast Area Queensland Australia
Dear Sir/Madam
I am a PERSON WITH ASPERGER’S and your goals are my goals.
Please have a look at my writings and synopsis at website

www.aspergerdemerger.com

I believe this could be to our mutual benefit.
Thank You REL

Hello,

Just saw this link (a little late) but wanted to let you know that we have successfully launched an Autism program for Chinese families here in Shanghai. We incorporate Western techniques such as, TEACCH, PECS, and parent education. The program is entirely Chinese, directed by a trained teacher and overseen by myself, a speech-language pathologist from the US (PhD) and founder of The Essential Learning Group (formerly Special Education Consulting, Shanghai). Our goal is to set up programs across China in the next 5 years. Very exciting.

And yes, the Chinese government monitors and blocks blogs (including AoA), Facebook, Twitter, and all other similar non-local ways of connecting with larger groups and communities. Families have little to no access to much of the available information and online resources, or simply to other families, living abroad, who just want to offer words of advice or comfort. Very unfortunate.

Dear Lisa in Texas,

Thank you so much for your concern and your willingness to help. You may want to contact my mentor, Helen, a professor of special education and an expert on autism in China. She started an organization called The Five Project that provides services, information and support to families with autism in China. She can be reached at thefiveproject@yahoo.com. Again, thank you for your kindness.

Cordelia

When did I become my Mom: You CAN start your own Stars & Rain!

Now, how can ANYONE say "this was there forever no one noticed it or diagnosed it". . . surely in a country with such strict norms, if autism was there 'forever' at these high rates we would know. . . how sad for all . . . China has high rates of toxins (lead, mercury, etc from what I've read in addition to them getting on the vaccine bandwagon)

Thanks for the article.

I live and work in Shanghai, China where my wife runs a school for kids with special needs, including autism. (Http://www.specialedchina.com) The Chinese are really great when it comes to how they treat my son.

We get far less strange stares and looks here than when we return to the states each summer. That might have to do with the fact that we are foreigners, but still it is refreshing.

MIke
Host
www.autismpodcast.org

Josh's Mom,
I read that some people started talking about diets, I have done a lot a of research and seems that the best diet for autism is the Specific Carbohydrates Diet, I worked miracles for my autistic son. It’s hard to implement but worth trying for a month, It doesn’t have the side effects that the Ketogenic or the Atkins diet have.

There are a few misconceptions regarding to China from the comments posted here.

Culture Revolution is already being officially considered a disaster in China for many years now.

There were a lot people died during Mao's era, but not 100 million killed. Most death come from (about 20 million) widespread famine due to bad policies combined with natural disasters during 60s.

Most of the observations by the author are spot on, but there are actually many special classes in middle/high schools for "Math students" and Math excellence is highly encouraged.

I agree that autistic kids do have a tougher time in China. It is actually a common culture thing in Asia that kids should strictly behave in school and at home. They can be easily rejected by school and sadly also by parents.

Roger
The Ketogenic diet that epileptics untill just recently use to do to control their seizures (a diet that measures everything including water, and you mostly consumed fats) the time limit is two years. BUT you will know if it is working right away, so it is not like you are on this diet for two years and hoping - you will know.

Before the Ketogenic diet way back in the 1930's there was the water diet. Fasting only and believe it or not the time that they held out for was a month!!!! Whew!!!

The ancient Romans in books written by their ancient doctors said in the case of epilepsy to starve them unmercifully!!!

So you can see why the Atkin's diet reducing carbs to 15 carbs a day seems like a God sent to me.

"In China’s collectivistic culture, everyone must conform to the norm and contribute to society at large."

That is what one can expect from a communist government. "Egalitarian" is the key word. Everyone must be the same, on the same level, in order to be accepted.

What concerns me is if there is a one child policy that results many times in forced abortions, how are the asd kids being treated by the govn't... the same problem that has no problems bringing out tanks to kill, maim , or permanently imprisoning discidents.... or terminating it's young.

I don't want to get into political discussions, but the fact that human life has had lower value in the eyes of communist regimes, historically (as in 100 million people killed under Mao), is also very relevant in this case.

Unless the gov't adopts a more humane view toward these kids, one cannot expect the people at large to either. Long term, either good or bad will come depending on where Chine heads.

And by the way, I don't view the cultural revolution as "successful" if so many people had to be eliminated to implement it. Enough about politics. I'll be quiet now.

I seem to remember reading, that when the drug companies were being forced to get rid of thimerasol in vaccines, they sent all the vaccines they had to China, since they were not allowed here. I remember a comment about waiting a few years to see if China's ASD rate would increase dramatically.

Sarah, thank you for your comment and for sharing the stats. Very scary.

Thank you for all your comments! I am very excited about this series and looking forward to writing more about autism in China.

Thank you for this story. I've been wondering how autistic children in other parts of the world are being treated.

Found this related story:

Autism and Global Human Rights

The WHO reports 1,100,000 cases of autism in China, while The China View reports around 1.8 million people with autism. The rate of autism is growing at 14% around the world, but in China it's growing at a rate of 20% per year. What is more disturbing than potentially 1.8 million people in a country with an estimated population of 1,321,851,888 (1.32% of the population with 8 in 10,000 being children) are not covered by the Chinese law on the Protection of the Handicapped.

Source:

http://www.associatedcontent.com/article/498085/autism_and_global_human_rights.html

To Tanners Dad - in case it is the inexpensive fish oil, coincidentally Mercola.com advertised today that their krill fish oil is now incapsulated in a different material that doesn't have plasticizers, is supposed to be a more pure coating without things in it that might be bad for one's health. Might be worth comparing it to see how it's different from the one you'll go back to.

Hi Bernadette/Tanners Dad,

Bernadette,While this post of yours is certainly off-topic,I thought I needed to comment on it.In the past year,I have been going through my own biomedical journey as an adult with fairly severe autism,and many other serious medical issues,the main ones being GI disease,and rheumatic heart disease,which I still have quite bad,even though my autism is going away.

I have the methylation defects,the metals, and the mitochondrial damage.In the past,I have had serious problems with developmental delay.I have the nonverbal apraxias,and learning disabilities.Up until fairly recently I did the head banging, vocal stimming,and eloping.I am on about a dozen diffrent supplements,but what finally pushed me over the edge into recoverey,from my autism that is,has been going off ALL solid food,and using only a liquid meal replacement.

The one I use is soy based,but if I don't eat anything else I have no food reactions from it,although I do if I eat foods with soy.

The improvements from going off solid foods was quite rapid,and very dramatic,but I was wondering if anybody could tell me how long I would have to go without regular food.I know people with severe GI disease,and who have vomiting ussues from cancer/chemo have to go without food for extended periods too,but I had not seen this widely discussed as a treatment for autism.

"The nail that sticks out gets pounded down."

Ironic. I live in the US and that's exactly the saying that comes to my mind when I think of what I've experienced in the last six years.

I watched the movie Citizen X a few days ago. I also spent some time trying to talk to school officials about the upcoming free H1N1 clinics that are to be offered in the public schools here where I live, and about vaccine safety. There's a scene in the movie where the forensic guy is talking to his superiors and trying to tell them that they have an emergency on their hands, and all his superiors have to say is "oh no there are no serial killers in soviet russia." I know they were only actors but I will tell you this--the expressions on the faces of those committee members and the willful ignorance reminded me of nothing so much as the expressions on the people in the school offices I spoke with.

You'd be darn hardpressed to convince me that the US is better than China when it comes to bureaucratic folderol.

Thank You All... I am thinking now it was the Inexpensive fish oil... We will get the better again and see what happens...

Tanner's Dad:

I am so sorry!

Like you, diet is our life.

It could be that it is not just an allergy to wheat, or milk protein, or eggs,(which I have no doubt many on this web site have) but damage to one of the two pathways to make energy for the body. The one that processes carbohydrates into glucose and energy. However, the fat pathway is still okay.

The vacuslitis foundation is stressing no white flour, no sugar, no white potatoes.

The epilepsy foundation is stressing the Atkin's diet with taking in slow processing carbs of no more than 15 carbs a day. An apple is 20!

Jon Poling has Hannah on such a diet, he says that it is damage to the glucose energy pathway.

Try fasting a day (unless Tanner already is in a way fasting from being so sick) and the next giving just some bacon, or a simple cup of cream, and see how Tanner feels?

I know many here are not all that religous, or Christians on this website. But something that meant a great deal to me after thinking on these two pathways (a spiritual moment, I suppose) was understanding a little bit of the symbolism of Genesis. Two brothers Cain and Abel - two different diets - two pathways to make energy. Cain's life style was geared to a diet of carbohydrates, and his life style has taken over world wide- no longer hunters and gathers. The mark of Cain on the forehead has to do with the ability to think.
Some how the carbohydrate diet/fat diet is somehow linked to the immune system, and as far back as Genesis was written - the people of old knew this.

About cultural differences.

In the U.S. there is a saying: "The squeaky wheel gets the grease."

In Japan there is (or was) a saying: "The nail that sticks out gets pounded down."

Sounds like China is more like Japan than like the U.S. No surprise there . . .

This is amazing work.

I've been really struggling with my son's diagnosis of late, and I've been asking a therapist for exactly that - help ME help HIM.

I think up until last year there was ONE Occupational Therapist in my country.

So disheartening... Wish I could start something like Stars and Rain here...

Thanks Cordelia for your touching article.
I have been in touch with some autism families in China on email, but they tell me the Chinese government monitors which websites they can visit and they have no access to Facebook. To get supplements into the country is also forbidden, and they seem so hopeless. Please let us know here in the U.S. how we can help.

Yes, the kind of cultural attributes you are noticing, such as conforming to the norm and shunning differences, not questioning authority are sadly what may have led them to the autism increase. Chinese immigrants here (Canada-and I'm sure it's even worse in the U.S.) are bombarded with "catch-up vaccines", and sadly, I wonder if they feel they are in any position to even question the safety of them. I have worked with a Chinese immigrant student with aspergers and his family is extremely aspirational. Both parents are talented musicians and although their son struggles in school, he (at 8 years of age!) had his grade 8 piano and his parents want him to "just be an engineer or something." Your volunteer work in this area is probably making incredibly differences to these families!

I am old enough to remember a television special broadcast about China following Chairman Mao's (1960's?) successful "Cultural Revolution".

During the program, they showed a segment wherein a teacher instructed her class to draw the image of a lion. When all the hand-drawn images had been collected .. the teacher held aloft an incredibly "detailed" drawing of a lion. The teacher than criticized the artist for being self-indulgent .. having drawn an image the rest of the class did not have the talent to draw themselves. So .. to discourage future displays of individual talents in her classroom .. the teacher showed the class the proper way to draw a lion .. which was a rudimentary, "stick-like" image of a lion, that could easily be drawn by everyone in the class.

Surely modern China recognizes individual talent as an "asset" and not a "liability"?

Cheers to you and your efforts! I look forward to reading more from you in the future!

Great article! You described the culture very well. I wonder if other Asian parents face the same issues such as in Japan and Korea. My sister went to Middlebury too and my family used to live in Tokyo. We're all connected. :)

Will be very interested to hear more on this

Welcome to Age of Autism. My sister graduated from Middlebury and now lives in Tokyo. I have been able to study how other countries deal with Autism since her son is on the spectrum and my Parents live in UK. I look forward to this series.

I know another 3rd world type environment where a Stars & Rain Program could be set up. Rural America. The support & help is growing but we have a long long way to go...

Very Tired... 30 days of Tanner not being able to keep food down... is getting very old...almost ready to give up GFCF Any Ideas Email me RealTannersDadatgmaildotcom thx sorry off topic.

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