If you're on Facebook...

...please vote for the National Autism Association to win $1 million from Chase Community Giving!

Chase is giving away $5 million to various charities and needs us to help pick which ones. All we have to do is vote for our favorite nonprofit (NAA!) and then get friends and others on Facebook to do the same. I've done it and it's super simple - it takes just a few clicks, less than a minute!

Please take a minute to visit: http://apps.facebook.com/chasecommunitygiving/charities/486243 and vote today!

(Voting ends Jan. 23. VOTE NOW!)

This is what NAA plans to do with the $1 million they hope to win:

The Issue

Autism is the #1 childhood disorder in the U.S. Once considered rare - affecting 1 in 10,000 children, autism rates have increased 600% in the last 20 years and jumped 57% in the last two years alone. Last month, the CDC reported that autism now affects 1 in 110 children, 1 in 70 boys. With such a sharp rise comes a staggering shortage of resources. Families are falling apart, many are losing their homes to pay for care that insurance won’t cover. Many individuals with autism suffer from severe gastrointestinal pain, seizures, food allergies, auto-immune disease, sleep disorders, and self-injurious behaviors. Wandering-related deaths have increased over the last ten years among children with autism. Abusive restraint and seclusion practices in schools are on the rise. Many children with autism are nonverbal and have become silent victims of abuse. Autism is a national health emergency in need of immediate resources, effective treatment, and answer-driven research.

The Plan

With one million dollars NAA will implement a three-by-three plan to significantly impact three most critical areas of need over the next three years:
1) Direct Assistance: We’ll begin immediately by providing real help, right now – giving direct financial assistance to families unable to afford treatment for their children. In addition, we will provide grants to local community agencies to protect those at risk of wandering-related death, and provide free resources for couples in need of marital support.
2) Education: We will produce workshops, toolkits and PSAs addressing the issues of abuse in schools and wandering. We will produce national conference events to educate clinicians and families on the latest advances in research and treatment.
3) Advocacy: We will advocate for meaningful scientific research, legislation to ensure access to appropriate medical care, lifetime care for adults with autism and laws to address the issue of abuse in our schools.

The Outcome

Our three-by-three plan addresses the following goals for the three most critical needs over the course of three years, with implementation beginning immediately:
1) Direct Assistance: Doubling the number of grants we are able to award to families in need of financial assistance for their children’s treatment and therapies. Significantly increasing access to lifesaving equipment for individuals at risk of wandering-related death.
2) Education: Production of conference workshops, multiple audio and video PSAs and free toolkits addressing the issues of abuse in schools, wandering, safety and family support. Hosting three national conference events to educate clinicians and families on the latest advances in research, treatment and prevention.
3) Advocacy: Successfully advocating for the most relevant scientific research, policies to ensure access to medical care, coverage for medical and safety devices, services and support over the life span, and protection from abuse.

China's first autism teacher

Before I left Beijing, I was lucky enough to get the chance to sit down and chat with Bo Laoshi (Holly), China's first autism teacher!

She told me that she was there, alongside Tian, right from the beginning. Bo Laoshi was interested in becoming a special education teacher, and at the time (1993), was a student at a university in Beijing for special ed. Tian visited their class to ask if anyone was interested in teaching children with autism. Bo Laoshi had never heard of the word "autism" before. It was so fresh and interesting, and she was intrigued. She realized that she could try to make an impact in this field that was so new and strange to many.

That weekend, Tian and Bo Laoshi got together to set up the first Stars & Rain classroom in the basement of a local kindergarten. They had one student: a six-year old boy. Bo Laoshi thought he was absolutely beautiful. He was also just so honest and sincere. The team started with four teachers: Tian, Bo Laoshi, and two other special ed teachers from the university. Shortly after they started, however, the two other teachers left. Apparently, their families objected to their working there. It wasn't secure enough. Salary, housing, and future opportunities remained unclear. So, only Bo Laoshi and Tian remained.

Tian had learned some teaching techniques from overseas (Taiwan, Hong Kong), and she shared everything she knew with Bo Laoshi. Bo Laoshi also applied what she had learned from her college classes and realized what worked and what did not work by trial and error. Every week, they changed their schedule, classwork, and teaching methods. Pretty soon, they had 6 students. In 1996, they learned about ABA (which is the method currently used at Stars & Rain). They realized that what they had been doing all along was actually ABA-esque! Cut to present-day... Stars & Rain has 20 teachers and many trainees, serves 50 families directly per term (with 4 terms per year), organizes outreach and training programs for other teachers and parents, and has opened a Group Home for teenagers with autism :) Read more about Stars & Rain's history here.

I asked Bo Laoshi how society's view of autism has changed since she started working in this field in 1993. She said that back then, nobody knew what autism was or what she was doing. They thought children with autism were orphans, were stupid, or had "brain damage". Many people also thought that the parents of children with autism were being punished. Since then, many people have gained knowledge about autism from the Internet or the news. Now, many people believe that parents of children with autism are often very well-educated (see this article on The Geek Syndrome).

Bo Laoshi believes that autism in China continues to be a "society problem". Resources are so scarce for people with disabilities. Chinese society is slightly more accepting to the hearing and visually-impaired because they can easily understand their disabilities and have some idea of how to help them (e.g. You can help someone who is visually-impaired cross the road, you can use sign language to communicate with someone who is hearing-impaired). However, many people find it difficult to accept autism because they don't fully understand it or know how to interact with people with autism. So, they reject these children and prevent them from entering their world and playing with their own kids. The behavior problems that often accompanies autism scares people off. These children can't communicate or play with others. Parents of neurotypical kids worry that their kids will pick up these "bad" behaviors, so they keep them away. "These kids will influence my child's development and learning in the classroom" is a common fear.

Bo Laoshi then told me that parents also have a difficult time accepting their own children with autism. They are ashamed to ask for help from neighbors or friends. They believe that problems at home should be kept at home and not shared with others ( 家丑不可外扬 , similar to "don't air your dirty linen in public"). Apparently, one should only share good news with others. Some parents don't even take their kids out of the house or tell others that their child has autism in order to "save face"! It is fairly easy to hide a disability when a child is young, but as the child grows older and more different from other kids, the pressure to conform becomes even greater.

Furthermore, due to China's one child policy, parents put all their wishes and expectations on their first and only child. Technically, they can have another child if the first has a disability (or is a girl...hmmm). However, many parents choose not to have a second child for fear of having another child with autism. Interestingly, many parents who do decide to have a second child hope and pray that it is a girl. They believe that 1) girls are less likely than boys to have autism (the ratio is 1:4, I believe), and 2) a daughter could help take care of her older brother with autism. This was the first time I have heard of couples in China who actually wanted to conceive a girl :)

I learned a lot from chatting with Bo Laoshi and I'm so happy that I got to meet her. Please let me know if you have any questions for her or if you would like to contact her directly.

David's thoughts

David is a family friend and a father of two teenage boys with autism. I told him about my blog and he had some comments that I wanted to share:

Sad to say, your Special Education in China section could have been written about the United States. Autism is the disability du jour in this country. Autism has been the cover subject of every type of magazine and the subject of countless news shows, but the focus is always on cute irresistible little kids who win the heart of all viewers. But autistic kids don't die before they reach adulthood, their behavior just becomes less "cute" and excusable to the general public. There is no place for them to go as adults. Group homes have waiting lists of years. The biggest nightmare of every parent of autistic children I know is the knowledge that after the parents die or become incapacitated by old age, the autistic child is doomed.

David's sons on the cover of Newsday

Beautiful Minds

Before I left Pathlight that day, I was given a little goodie-bag containing an ARC booklet, Pathlight pamphlets, and a little book titled Beautiful Minds.

Beautiful Minds is a collection of handwritten journal entries and sketches by students from Pathlight School. Ages range from Primary 1 (1st grade) to Secondary 3 (8th grade). I have yet to finish the book, but I've already found some very sweet pieces that I wanted to share:


Dominique, Primary 1:

I will try to remember to leave one finger space between two words.


Anonymous, Primary 4: "Why I like Pathlight"

I am happy that I can go to school again. The teachers at Pathlight are kind and encouraging. They are patient and make no demands when I am stressed. At my previous school they were angry all the time. Their shrill voices hurt my ears so much that I would be in tears. Sometimes I screamed so that I could shut out the noisy surroundings.

My classmates are not as noisy as in my other school. I like them as they are not so demanding. I can speak if you give me time to respond. PE is fun and OT gives me a break. I wish I have music class.

When it is quiet I am calm and I can think and organise my thoughts better. I look forward to being able to do more for myself.


Syafiq, Primary 4: "My Favorite Show"

Today was the funniest day of my life. I was watching George of the Jungle. It was so funny that I threw back my head and laughed. Even when the moron (who is the bad guy) fell into the elephant poo. Well George was kind of like a tarzan, except that he banged and smashed into trees. That is why we always sing "George, George, George of the Jungle as smart as he could be. Awwhaawaaaa! Watch out for that...BANG! Ooh tree." It was my favorite show of all. In the end, he married his girlfriend. Ursula, and got a baby son. How cute! As for the "moron", he got kissed by an ugly ape (yuck).


Today marks the last day of 2009. It has been a memorable year, full of unexpected events and wonderful people that have come into my life. For this, I feel very blessed. Looking forward to making more memories in 2010. Happy New Year!!

Love,
Cordelia

Pathlight School

My visit to Pathlight School, the first autism school in Singapore, was even better than I had expected! As I mentioned earlier, Pathlight is a beautiful place, in many ways:



Pathlight moved to its new location 6 months ago. The new building is gorgeous!



Pathlight School is also home to the main office of Singapore's Autism Resource Center (ARC).



One of the two main courtyards between classrooms.



The other main courtyard. Apparently, the architect of the new school studied what might be aesthetically pleasing to people with autism and created simple, structured, orderly designs.




Pathlight's vegetable garden.



Vegetable garden.



Courtyard



Courtyard



Pathlight Cafe, the cafeteria, where older students (13 and up) help to prepare the food.



Some food stations.



Western food & drinks



Singaporean food



Step-by-step visual instructions (children with autism tend to be visual learners) at every station for preparing food and cleaning equipment. They practice following detailed instructions and working independently to prepare for employment.



The new bakery! Students come here to learn how to make pastries and cakes. Classes are taught by a professional baker. The students hope to sell their creations to the general public in the near future!



DJ station in the lunch/break area. Students can send in their music requests and dedications to older students who DJ!



One of the many classrooms.



Pathlight is situated between two public schools. During lunchtime, the gates between the schools are open to allow students to mix & mingle. Although it is difficult for children with autism to interact socially with their typically-developing peers, the physical intermingling facilitates these exchanges.



The gate between the two schools.



The P.E. area




Turf field



Early Intervention Program (EIP)...for the little ones. Lots of stations to do a variety of fun activities. They even had a huge gym room for gymnastics class, taught by a pro gymnast.



EIP area



Hanging on the wall in the EIP area, a reminder to use people-first language.



Pathlight Library, where the glass doors are decorated by students' sketches & cartoons.



Pathlight Store, where students' artwork is printed onto t-shirts, made into journals and post-its, framed, and sold! Proceeds go directly to the student designer. This encourages those who have a passion and talent for art to pursue this as a career.



Pathlight Store. Products can also be purchased online at the Pathlight eMall.


Here are a few interesting things I found out about Pathlight during my visit:

• The student-teacher ratio is 1:6. Teachers must go through a highly selective interview process. Special skills teachers (art/design, gymnastics, baking, IT) are professionals in their field who have been trained to worked with children with autism.
  

• Most children who enter Pathlight at age 3 or 4 are non-verbal. They learn to use the Picture Exchange Communication System (PECS). Most students are verbal by the time they enter Primary 1 (1st grade). For those who continue to be non-verbal, the key form of communication is writing.
  

• Every experience, inside or outside the classroom, is a learning experience. The focus: normalization and dignity. The curriculum is exactly the same as that of other public schools in Singapore, however, instead of taking a second language (Chinese), students take a social skills class. Pathlight students are taught social skills not to become just like other children, but to learn the skills necessary to function, live and work cooperatively with their neurotypical peers. They are not forced to become "normal". Once they learn the skills, they have a choice about whether or not they want to integrate themselves. Without the skills, they have no choice.
  

• More on social skills and "normalization": Students are taught not to control their emotions but to control the expression of their emotions. For example, crying out loud in class is not OK. Excusing yourself to cry in the bathroom is acceptable. Also, harmless stereotypies are acceptable. For example, hurting yourself and others or destroying property: not OK. Arm flapping: OK.
  

• Pathlight has several "buddy schools" that participate in exchanges with Pathlight. I was told that there are three categories of neurotypical children: 1) They are over-forgiving and over-accepting, which is not good. 2) They tease and reject them - also not good. 3) They provide a balance of being kind and accepting, but also honest and sincere. This group is ideal for children with autism. Mutual acceptance is key - Pathlight students also have to accept and try to understand their neurotypical peers!
  

• When Pathlight first opened, about 70% of students went on to attend a public school after a few years with the Early Intervention Program. Now, only 50% of students go on to other schools; half stay at Pathlight until age 18. This is due to parents' decreased desire for their children to become "normal", as well as their greater appreciation of and desire for Pathlight's educational model.

• Children with an IQ of less than 70 attend Eden School (formerly known as the Singapore Autism School).
  

• Students participate in after-school activities and summer camps that teach them sports such as rollerblading, archery, and kayaking!
  

• Pathlight also puts a lot of effort towards empowering caregivers. Like SPD, Pathlight takes the Family First approach.
  

My visit to Pathlight School truly was a wonderful experience. Everybody I met there was so warm and friendly, and very happy to tell me more about Pathlight. Unfortunately, I didn't get to meet any students since school was out for winter break. Still, it was nice to meet some staff members and to take a look at the facilities - aren't they amazing?

To learn more about Pathlight School, please take a look at their website.

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.

Angel Wings

My visit to Pathlight School yesterday was nothing short of amazing :) Pathlight is a beautiful place, in many ways. I took lots of notes & photos and will be writing about it shortly after Christmas. In the meantime, I wanted to share an e-mail I received from two teachers at the Anshan Angel Wings Center for Children with Autism.

I met them during my trip to Nanjing. They had heard from a family that Helen would be in town for a few days and they wanted to meet her! During the meeting (which I got to join in on), they told Helen about a school they recently founded for children with autism in Anshan, a small city in northeast China. They even showed photos and video clips of the students and staff!

They made me realize that there are actually quite a few autism centers all around China. Because Stars & Rain has been fortunate to get some publicity, many people (especially foreigners) think it's the only one that exists. Having volunteered at Stars & Rain, I understand how much support it (especially the group home) still needs from volunteers, autism experts, and financially. But what about lesser-known schools in smaller villages in the middle of China, like Anshan Angel Wings? It’s wonderful that they even exist (providing services for families that can’t afford to travel to and work in big cities like Beijing), but unfortunately they are much harder to run. Anshan Angel Wings, in particular, caters to less-fortunate families who are not able to pay as much as others.

Like Stars & Rain, the teachers at Anshan Angel Wings have learned an important lesson: autism centers in China cannot depend solely on foreign experts to provide information about autism. Teachers and caregivers in China must become experts themselves and share what they've learned with others in need.

I was very touched to see the dedication of these teachers. They are so selfless and have huge hearts. I exchanged e-mail addresses with them and, days later, they wrote me a very thoughtful e-mail, inviting me to visit their center in Anshan. They offered to pick me up from the closest airport or train station (hours away from their center) and arrange a homestay for me. I'm no teacher, no expert, no professional... but it didn't matter to them. They just wanted me to take a look at their center, meet some kids, and spread the word.

Unfortunately, I had to tell them that I wouldn't be able to make it this time - I was exhausted from traveling, weeks away from leaving China, and wanted to make the most of the little time I had left at the Stars & Rain group home. They replied that they were disappointed but understood, and that the invitation was always there. Not long after, they sent me another invitation, asking if I had found time to visit. It really broke my heart to say no. I just received another e-mail from them this afternoon. They wanted to wish me Merry Christmas! Here it is:

尊敬的若老师您好！

从南京回来之后，给我们的感触颇多，您在大洋彼岸依然对中国的孤独症儿童给予莫大的帮助，而我们天使之翼，作为从事孤独症儿童教育康复训练的教师们，更应该为这些孩子们而努力。

在圣诞节即将来临之际，我代表鞍山天使之翼孤独症儿童培训中心祝你及您的家人圣诞快乐！

鞍山天使之翼孤独症儿童培训中心

2009年12月23日星期三

Dear Ms. Ross,

After returning from Nanjing, we were left with many impressions of you. You are on the other side of the Pacific Ocean and yet you still care so much for children with autism in China and want to help them. We teachers at Anshan Angel Wings have been inspired to work even harder to serve our children.

On this Christmas Eve, on behalf of the Anshan Angel Wings Center for Children with Autism, I wish you and your family a very Merry Christmas!

Anshan Angel Wings Center for Children with Autism

Dec. 23, 2009

I couldn't ask for a more heartwarming Christmas letter :)

Merry Christmas to all! Wishing you and your loved ones a beautiful day.

Love,
Cordelia