Children of the Stars: Autism in China
I’ve been learning a lot from a recent discussion here about autism genetics. My own interest in the topic arises from what it reveals about how Charlie is linked to us, to our family. While neither Jim’s nor my family has had a child with an autism diagnosis prior to Charlie, we’ve both noted autistic traits in relatives in both of our families.
I’m Chinese American on both sides. I’m third-generation; both sets of grandparents emigrated to the US from Toysan County (Toysan is the Cantonese pronunciation of Taishan, the county’s name in Mandarin). All but a few of my very distant relatives are now in the US. Jim is Irish American by way of Hudson County in New Jersey and Brooklyn: Charlie’s Hapa. Nonetheless, I sometimes wonder what it would have been like for him to have been born in China. What it is like to be autistic in China and to be a family raising an autistic child in China?
There’s a new documentary out called Children of the Stars which tells the story of the family of Feng Jia Wei, who is 5 years old and autistic. He and his parents, Feng Lei and Hao Yue Chun, travel across China to attend an 11-week-course in Applied Behavior Analysis (ABA) at the Stars and Rain school to help him:
In a small village on the outskirts of Beijing, there is a unique little school that runs an 11-week course specifically for autistic families. This school relies entirely on charitable donations and has very rudimentary facilities. Its name is “Stars and Rain”.
The film tells the story of the Feng Jiawei family who, after being on a waiting list for nearly 2 years, finally make the long journey to “Stars and Rain” to participate in the course. They desperately hope the school will teach them how to understand and cope with their autistic 5-year-old son. Their boy cannot speak and is often violent – especially towards his mother. The local schools will not take him and the family feel ostracized from society.
As there is limited community help for autistic people in China and no social security system, the parents are extremely concerned about their future prospects as a family. They know that if they cannot get their son to integrate into society and attend a standard school, then life will be very bleak. Their fear is that their son will never be able to get meaningful employment or support himself.
Should that become a reality, they have already decided on a drastic and tragic plan - to commit a family suicide. They know that when they are too old to work and cannot provide for their son, he will have to beg. They feel he will not survive on the street so they want to die peacefully together by taking a lethal poison. This plan is not uncommon among autistic families in China.
Jim and I have traveled far to find the best education for Charlie, but not as far as Feng Jia Wei’s family, and not just for an 11 week course, but for continued years of school and therapies. I’ve been watching the trailer over and over: A little boy is shown not holding out his hands to catch a ball which bounces off his chest (this was exactly our experience teaching Charlie to catch a ball; he had to learned to track the ball and time when to hold up his hands). Feng Lei asks his son:
Wo shi shei? [Who am I?]
And Feng Jia Wei says:
Baba. [Daddy.]
Huge smile from Baba, big hug, heartmelt.
Children of the Stars also features Tian Hui Ping, who founded the school “Stars and Rain” in 1993 and who is the mother of an autistic child, and Feng Yun Hong, Feng Jia Wei’s teacher. The film was directed by Rob Aspey and produced by Alexander Haase; you can contact them and also here’s more about how you can help.
And, the June 26th Patriot Ledger profiles The Five Project, a Massachusetts-based organization that seeks to fund workshops about autism for parents and caregivers as well as teachers in Beijing and Nanjing; to form support groups for families of people with autism and another for young adults with mental illness and their families; and (hopefully) to send American experts about autism to China and to make it possible for Chinese educators to come to the US to receive training in teaching autistic children.
More about autism schools in China and about diagnosis autism in China.Special thanks to Monika for telling me about the film.
15 opinions for Children of the Stars: Autism in China
Ms. Clark
Jun 27, 2008 at 5:37 am
Na4 ge xiao3 hai2 zi shi zai da4 qiu2 li2. Wo ye3 yao4 zhe yang2 de da4 qiu2.
Ms. Clark
Jun 27, 2008 at 5:44 am
http://www.childrenofthestars-film.org/images/fengjiawei.jpg
Wo xiang3 zhei4 ge. :-)
mommy~dearest
Jun 27, 2008 at 6:51 am
Wow- that story gave me chills. It’s heartbreaking that the family thinks a family suicide is their only option in the end. Hopefully more will open up to them.
Synesthesia
Jun 27, 2008 at 9:00 am
There’s got to be some sort of way to help them!
Them and other families in such a position.
Emily
Jun 27, 2008 at 10:43 am
It’s terrible for them that family suicide is a realistic recourse. That is heartbreaking.
On a different note, we used to call TH Santa’s Little Helper (Simpson fans will recognize that) because when we threw him a ball, it would just bonk him, bounce off, and roll away. He wouldn’t put out his hands to catch it.
VAB
Jun 27, 2008 at 10:55 am
Out guy wouldn’t catch balls either, and still can’t, but I didn’t catch balls as a kid, and I’m the opposite of autistic (if you get stuck in an elevator with me, you’ll know what I mean). I just have exceptionally poor had eye coordination. Ball catching is way overrated, in my humble opinion.
Kristina Chew, PhD
Jun 27, 2008 at 11:09 am
I duck when balls are thrown at me.
Synesthesia
Jun 27, 2008 at 11:13 am
So do I.
Being hit would be painful.
Now to figure out how to get rich…
aspecialeducator
Jun 27, 2008 at 12:04 pm
I am a fellow ball ducker. I spent my childhood avoiding games with balls, it just hurt too much. Do you know if the film will be shown in it’s entirety in the U.S. in the near future? The trailer is beautiful and haunting. Thanks for sharing.
Regan
Jun 27, 2008 at 2:22 pm
I want to see the film.
Those bubbles in the swimming pool were too cool!
At the end of the trailer–he caught the ball. Yea!
Leila
Jun 27, 2008 at 5:51 pm
I’d love to help… Will see what I can do.
Shairn
Jun 27, 2008 at 6:24 pm
I spoke with a psychologist from China about if the increase in incidence of ASD and related neurodevelopmental disorders is also seen in china. She told me that it is. I wondered about it because of the high level of industrial pollution in china. does anyone else have information about this?
Marla
Jun 27, 2008 at 7:19 pm
Very interesting. I could relate to the scene of the parent trying to teach and the child trying to slap the parent. Ugh. That still happens a few times a week in one situation or another.
So glad to show they end the clip on a happier note. I am assuming the family now realizes that they don’t need to contemplate suicide. Every child is a gift. I understand the shock, the helplessness feelings but I am fortunate to have never had such thoughts. I look forward to the film.
Kristina, I have some good news. M may qualify for the Childrens Autism Center here in town and better yet our insurance will cover it! It has been open for two years. I think M is finally at a place where she could attend without me having to call her in sick every day. I pray! I toured it today and it is looking very good. I am praying she gets in and they can help us teach her.
Jane S.
Jun 28, 2008 at 5:36 pm
When I was in Kansas, I was put in touch with a woman who moved to US from China for services. She moved to US with her child with autism, and left the rest of her family in China. I cannot imagine how hard it is to move to another country. New culture, language etc…
S. Mak
Jul 10, 2008 at 11:07 pm
I first discovered this video after much digging from CNN. They showcased it during the World Autism Awareness day April 2nd…I can’t remember the number of times I’ve watched this trailer and those exact parts get me as well.
As an ASD Consultant, I’m inspired to go to China and help those in need.
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