Grade 10 student Monica Cao is proving that you’re never too young to make an impact. This year, she’s spearheading a Children’s Day Online Charity Auction to support the Beijing Cherish Autistic Rehabilitation Center. The auction is live and will run until Jun 1 at 6.30 pm. This digital fundraiser invites everyone to scan the QR code and bid on great prizes, turning compassion into concrete help for those in need.

珍爱孤独症儿童康复中心 (Beijing Cherish Autistic Rehabilitation Center) is a center in Beijing for kids and adults with autism and other disabilities, like cerebral palsy. It started in 2007 in Tongzhou, and has helped over 200 people with therapy, special classes, and adult care. There are 50+ teachers doing one-on-one lessons, group activities, and therapy. The organization also has a place in Tangshan for older kids to learn skills and art. The group’s mission is to help people and make families happy.

We spoke to Monica to find out more about the charity auction.

What inspired you to organize this event, and why focus on children with autism? 

I was inspired to organize this online charity auction due to my school’s six-year commitment to supporting the Beijing Cherish Autistic Rehabilitation Center, as well as my family’s personal contributions in the past. This cause means a lot to us. The center’s dedication to providing essential therapy, education, and support for children with autism motivated me to contribute further. With the help of my father, “The Foodie Emperor,” we were able to get quite a lot of awesome auction items from the local F&B community. Also, participating in a school charity club trip to the center was an eye-opening experience. Witnessing firsthand the impact of the center’s work on these children inspired me to raise funds for food and supplies to keep their mission going forward. Because it really is a great cause!

How are the auction items selected? Are there any standout donations? 

Dad asked his friends in the F&B industry. And they are the unsung heroes in Beijing as they ALWAYS support the local community and were happy to help. The standout prize has to be TRB’s donation of dinner for two at one Michelin-starred TRB Hutong or lunch for six pax at Iberico by TRB, which was worth over RMB 5,000.

What has been the community’s response so far?

It started out slow since most students don’t have a lot of funds to spend, but then my parents started to push it out to friends, and then their friends pushed it out. So, it has gained a lot of traction in the past couple of days.

Can people participate if they don’t want to bid but still want to contribute? 

Absolutely! Anyone who wants to donate can add 宋宝玲 from (珍爱孤独症儿童康复中心). She’s the boss of the organization, and she’s an amazing woman. If you look at her moments, she is always transparent about any donations that she receives, and you can see that everything goes directly to the kids. You know what you donate is going to a good place and for a good cause.

What is your fundraising goal? 

I would have been pleased with RMB 10,000 total. But today it went a little viral, and we are over RMB 12,000  already and still have a few days to go. Since this has been so successful thus far and we have had such amazing feedback, I plan to continue this online auction every Children’s Day going forward. Hopefully, I can get some more students involved and we can make it even bigger next year.

Do you have a personal connection to autism advocacy, or was there a specific moment that motivated this initiative? 

Going to Beijing Cherish Autistic Rehabilitation Center and seeing the kids was a shocking and eye-opening experience. Once you have been there, reality hits you hard. Really hard!

What has been the most rewarding part of organizing this auction? 

Helping the kids and giving back to the local community! I’m looking forward to working with Ms. 宋宝玲 and finding out what the children need. Then I will order the food and deliver it to the center before the end of the school year.

What message would you like to share with potential bidders and supporters? 

If you would like to bid in the auction, it has a deposit of RMB 100, which you will get back after the auction. The auction will end on Jun 1 at 6.30pm. If you win, please pay within 24 hours; otherwise, it will go to the next highest bidder. If you would like to support Beijing Cherish Autistic Rehabilitation Center, you can add Ms. 宋宝玲’s WeChat and donate directly. They accept all donations, including food (especially rice, flour, and oil). And if you could, please tell your friends and share this auction and cause with them!

Images: Monica Cao, TRB Hutong, Preston Thomas, freepik

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. There is not one autism but many subtypes, which is why it’s referred to as a spectrum disorder. Most people on the autism spectrum are influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think, and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.

Let’s look at the statistics of the prevalence of autism in China:

• Approximately 1% of the Chinese population is autistic. That might seem like a small number, but according to the 2021 census, that’s 1.4 million people.
• 1.1 in every 1,000 children under the age of six are autistic, totaling an estimated 111,000 people.
• 77,000 children registered are in rehabilitation centers nationwide.
• 36,000 autistic children receive rehabilitation aid according to China’s Disabled Persons’ Federation (CDPF).
• RMB 432 million is the government investment in the rehabilitation of autistic children.
• CDPF expects to establish a public medical aid system as the government prepares to invest more in the education and rehabilitation of autistic children.

In Beijing, Stars & Rain (Xin Xin Yu) runs one of the most celebrated autism rehabilitation facilities in China, housing over 300 students, but considers its primary cause to be parent education and public awareness. Stars & Rain also trains teachers and offers vocational training to autistic teens as a means to prepare them for the future.

In order to fully appreciate what Stars & Rain, founded in 1993, (and other charities with similar causes) are doing, it’s important to understand two things: 1) there is very little education on “disabilities” or “disorders” in China, so the majority of people don’t understand what autism is, and 2) the number of autistic children is growing and will continue to grow as the new two-child policy was put in place.

The social stigma associated with autism is strong in China where the idea of honor, “face”, and shame are paramount to their communal existence. Parents of autistic children are often blamed for their child’s state and will abandon or hide their child at home to avoid the public shame of having committed a sin (karma) or made a mistake during their pregnancy (a common belief).  Educating parents on recognizing autism, what it is, and how to deal with it is Stars & Rain’s foremost concern. With such a social stigma, it’s not hard to see why Stars & Rain is also very concerned with public awareness—after all, one can build special education schools and classrooms, provide aid and scholarships, but if the parents won’t accept help out of fear of humiliation, then the children still cannot be helped.

For more information on Stars & Rain, visit their website. If you’d like to learn more about how Stars & Rain was founded, watch the Jet Li movie, Ocean Heaven (2010), which is loosely based on the lives of the founder, Tian Huiping, and her son Yang Tao, but from a father’s perspective.

Scan the QR code to watch our video that busts myths about autism.

To learn more about autism and how you can help raise awareness, check out Special Education Network & Inclusion Association (SENIA) Beijing’s presentation.

KEEP READING: The Kids With The Designer Genes – It’s World Down Syndrome Day

Images: Pexels, SENIA Beijing

In the last couple of years, the so-called ‘anti-vaxxer’ movement has gained a lot of momentum. Sparked by a now-debunked, since-retracted study by ex-physician that falsely linking the MMR vaccine to autism, it led to parents all over the world being afraid to vaccinate their kids for fear that they may develop the disorder. Despite the potentially fatal risks for children who are unvaccinated and the fact that the supposed autism-vaccine link has been conclusively put to bed, the link between the two words does linger.

Part of the problem is that people’s knowledge on the subject can be limited, as coverage around it tends to sensationalism. In recent years, both international and local schools in China are becoming far more proactive about integrating learners on the autism spectrum and other neuro a-typical students into mainstream education, but before a parent even begins to consider schools best suited for their child with autism, it is important to get a few basic facts covered.

To cut through some of the haze around this sensitive but very important topic, we wanted to go straight to the experts. Dr. Mike Mehrvarz Ph.D., a psychologist at International Medical Center Beijing, and founder of Dr. Mike Learning Land, has spent years in Beijing helping families who are raising autistic children.

I think I or my child may have autism but I’m not sure. How can I find out?

Children with autism generally show certain symptoms before age 3 and they also might have a history of some developmental delays. Parents and or caregivers can notice many symptoms as early as even age two or before but it is different in every child. The proper way to find out is to have the child be evaluated by a child psychologist as well as a pediatrician with a specialty in developmental disorders or a pediatric neurologist. Autism symptoms have a range of severity and symptoms, which include difficulties in communication, social interaction, poor eye contact, rocking, talking to oneself, being overly sensitive to touch, smell, light, sound, and many other symptoms.

How is autism diagnosed? Is there a test for it?

To diagnose autism, a Child Psychologist needs to do comprehensive psychological and developmental tests, interviews with the parents, collect the mother’s pregnancy history, and observe the child for specific signs. Developmental Pediatrician diagnoses autism using certain medical exams and tests can also be performed. However, for the rehabilitation of these children, it is necessary to conduct several psychological tests including an intelligence test, which is the most important part of the testing protocol for these children.

How can I find out what caused my child’s autism?

There isn’t any specific reason found as to the cause of autism at present. Some researchers assume that it might be related to environmental factors, genes, chromosome abnormality, parents’ age, family history, and more. Gene mapping, chromosome analysis, and some other tests done by a developmental specialist physician might give some indications as to the cause of this disorder.

How can I find out if my child’s case is genetic? Can we tell which side of the family the autism came from?

There are indications that this disorder can run in the family and being related to parental genes. To find out more about this you can consult with a developmental pediatrician.

If there is no autism epidemic, why do the autism statistics just keep climbing?

Unfortunately, it is hard to guarantee the perfect health of a child during pregnancy. Autism is caused by brain abnormalities in different areas. The causes might be related to several factors including gene, environmental factors, toxicity, and a pregnant woman’s health during pregnancy, parents’ age, and many more. Given the above reasons and as I have seen these children in my practice over many years, I guess environmental factors, parents age, woman’s physical and psychological health during pregnancy is quite important for newborn overall health.

How can I be sure vaccines have nothing to do with autism?

There have been controversies about the various side effects of different vaccines on children’s brains and overall health for many years, but numerous scientific studies have shown that there is no link between vaccines and autism. However, I always stress to parents to please discuss it thoroughly with child pediatrician before having your child vaccinated.

How can I find the best treatments for myself or my child?

If children get the right help at a young age, the outcome will be much more effective. Child psychologists with a specialty in the treatment of Autism can perform the full assessments, treat, and do comprehensive rehabilitation. If the child has physical or speech problems, he or she will be referred to a physical or speech therapist for treatment. Treatment of autism is a collaboration between different disciplines, depending on the extent of the severity of Autism symptoms. In mild to moderate cases, all treatment and rehabilitation can be done in an outpatient setting. However, severe cases will require the child to attend specialized schools for ongoing training in many factors depending on the child’s difficulties and needs. With the advancement in technology now, there are some new training programs available for these children, which can help to speed up their rehabilitation.

KEEP READING: Comparing Special Education Approach and Inclusive Curriculum Design

Photos: Unsplash, Dr. Mike Mehrvarz

Recently, China’s Ministry of Education issued the draft rules of a new regulation on the implementation of educational punishment for primary and secondary school (standard primary and secondary schools, secondary vocational schools, and special education schools) teachers. The new regulation is open to feedback from public opinions until December 22 this year.

To help teachers to achieve better results, the new regulation lists punishments allowed to be carried out by teachers based on three categories according to the severity of the student’s offense, including “naming and shaming”, suspending the student from taking field trips or other group activities outside the class schedule, and notifying the parents immediately.

In response to increasing public concern about school bullying incidents, the rules clearly point out that if students bully classmates, abuse teachers, or commit other acts of misconduct, teachers should ask the school to suspend the student from classes or school for up to one week.

READ MORE: China to Amend the Law on the Prevention of Juvenile Delinquency

Beijing voices on the new regulations

Jolie, a mom of a middle school girl who is now studying in seventh grade of a key public school in Dongcheng District, Beijing, welcomed the move. “But in practice it could be complicated,” she said. “The teacher’s disciplinary measures against students are basically consistent with the content of the new rules, which is appropriate.”

As a mom of a 6-year-old boy, Bing from House of Knowledge strongly agrees with teachers setting boundaries and rules for their children and encourage them to practice them. But if the child is not good at something, corporal punishment is not a good method.

Yi’an, a 6-year-old international school student, said both adults and children should have the same rights. The regulations will not help students behave better. If the adult administers corporal punishment to the child, the child will be more resistant.

From the point of view of a mom who has a special need child, Grace disagrees with the new regulation. “The rules for special needs children, especially children with autism, are very unfriendly.”

She told us that the lack of understanding of rules is a major feature of children with autism. They might show “undisciplined” actions such as not listening to the teachers, violating classroom rules, even having physical conflict with classmates. All those behaviors need the teacher’s guidance, instead of punishments.

READ MORE: Autism Services for Children in China: A Therapist Responds
READ MORE: Beijing Mom Highlights Shortage of Autism Therapists, Despite Offer of Training
READ MORE: The Case for Applied Behavior Analysis: An Interview with Autism Partnership Director, Toby Mountjoy

On the other hand, some teachers said the regulation will at least help students better understand the consequences of misbehaving and that the role of parents is important during the implementation of the regulation.

Meanwhile, in response to the measures taken by the Ministry of Education recently about student discipline, we received some feedback into the issues from Canadian International School of Beijing (CISB) teachers.

The Preschool/Elementary Vice Principal Jenny Sabin told us, when it comes to discipline in instances of inappropriate behavior, they focus on changing the behavior, and not punishment. “So if you made a bad decision on the school bus, you shouldn’t miss lunch. Instead we say ‘This happened on the bus, it is unacceptable, so now you’ll have to sit next to the ayi during the bus ride.’ ” She said. “If a student is too aggressive on the soccer field, then they won’t be able to play on the soccer field for an appropriate period of time.”

Ann Marie Luce, the Preschool/Elementary Principal of CISB, said they want students to feel like they belong to their community. One way that they do that is celebrating cultural diversity in the community.

“We also seek first to understand where such inappropriate behavior is coming from. Are they seeking attention? Are they hungry? Lonely? Are there challenges with language that are making them feel isolated, and leading them to act out? Understanding these issues, and how to help students proactively, helps us prevent behavioral issues later. ” Luce said.

Photo: pexels.com, MOE.com

Back in September we published an article about a mom who was struggling to find autism services for her child here in China. The story attracted such interest that we were contacted by a local autism professional, Eva Ma, who wanted to stress that Applied Behavior Analysis (ABA) is not the only treatment for children with Autistic Spectrum Disorder (ASD).

In an effort to give our readers the clearest picture and the most amount of voices, this past Saturday (Nov 9) we attended a conference hosted by US-based autism clinic, Autism Partnership (AP), entitled Treatment That Changes Lives: Evolution of Applied Behavior Analysis (ABA) at the Bai Fu Yi Hotel near Dongzhimen.

AP Director, Toby Mountjoy, was kind enough to sit down with beijingkids and discuss a range of topics including the availability of resources for children with autism in China, ABA as the most effective therapy, and the new office that AP will be opening here in Beijing next year.  

Can you give us a very brief description of what autism is?

TM: The word autism comes from the Latin word for “within one’s self,” because when Hans Asperger came up with the name in 1942, the reason why he labeled them autistic is because they were different from the other kids in that sense that they seemed so within themselves, and socially were not connecting with people around them.

We don’t know what causes it. Some people might profess to know, but we don’t know what it is. There is some indication that genetics may play a part in the disorder because if you have twins, the chance of them both having autism is way higher, so that suggests that DNA is a part of that, but it’s not 100 percent.

It’s a behaviorally defined problem, meaning there’s no blood test, there’s no medical test you can do to evaluate it. It’s based upon an observation, taking the history of a child’s development. And they’re going to have issues in a number of areas. One of the areas is they’re going to have some kind of social deficit: they might be disinterested in what people do, you might see them wandering around at recess time, they maybe not able to form connections or friendships, they might lack the knowledge of how to read social cues, and so they might have a lot of anxiety in social situations knowing that they’re not very competent.

And then you’re going to have some communication and language deficits, and it’s not just understanding language, but the use of language. About 50 percent of the kids who come to our clinic aren’t speaking at all, and are way behind other kids their age.

We also often see a deficit in their play and leisure skills, and in some repetitive behaviors; maybe they like to line things up, or they might like to repeat behaviors over and over again like watching wheels on a car, paying attention to small details on toys, or doing repetitive motions with their body to pass time. Or if they don’t have that, maybe their play skills are not at the same level, or their imagination or creativity may not be quite there, or their interests may be very narrow.

So those are three main domains, and to get diagnosed with autism, you have to put a tick in all three boxes.

What is your view that autism is not a disability or difficulty, but rather a different way of being?

TM: There are many views on this these days. There’s a movement in neuro-diversity, and in particular some adults with very high functioning autism, and the movement believes we shouldn’t be thinking about treatment for autism because it’s not a disorder, it’s a way of being, it’s the way they’re born, and you shouldn’t be looking to eradicate that or change that. And some of the things that autism has bestowed upon them might be beneficial. Like their memory might be super sharp in terms of their ability to perform certain tasks. Anthony Hopkins has talked about having autism, and how it helps him see all the different aspects of a character and it made him a good actor.

But not all kids with autism are high functioning, and there’s many kids that, when we first see them, they have a lot of problems. They don’t know how to talk, they don’t know how to play, they don’t know how to engage with the world or really understand how to conduct themselves in lessons or in learning situations, which for us, is seemingly going to really narrow their options of what they might want to do when they’re older. We feel very strongly that we should guide children at a young age, give them skills, so that they can make decisions later on. In the old days, 50 percent of the population [with autism]would be non-verbal as adults, that isn’t going to open your options to jobs or relationships or many things that typical people take for granted.

So I think all the individual kids with autism are their own individual person, they bring their own individual personalities, they bring their own thing, and we’re not trying to eradicate their personality or create some mythical typical child, we’re just trying to help teach them things that will help them get on with life.

Can you tell us how Autism Partnership got started?

TM: AP was begun in 1994. I was originally hired by some parents in 1996 who had children with autism in Hong Kong, and they recruited Dr. Ronald Leaf from the United States to come to Hong Kong to organize and train a group of staff to work with their children. There weren’t a lot of resources in Hong Kong at that time for children with autism. So Ron Leaf came to Hong Kong, picked a team, trained us, would come back frequently from the States to oversee the cases and continue our training. That went on for a number of years, and then in 1999, we decided to open an office in Hong Kong under the umbrella of Autism Partnership which had offices in Los Angeles, so that we could hire the staff directly, provide better training, and provide more structure for the staff.

The title of this conference was Treatment That Changes Lives: Evolution of Applied Behavior Analysis (ABA). Can you give us a brief rundown of how ABA has evolved over time?

TM: We’re presently quite concerned about the field of ABA. What’s occurred in the United States, which is a good thing, in pretty much all the states right now, an ABA program is covered by medical insurance which is really good. They can get an ABA program for free, and it’s an expensive program, incredibly labor-intensive.

However what it’s led towards is that hedge funds and big financial companies are buying up businesses in the United States and it’s a purely profitmaking exercise, and this has greatly affected the quality, and we’re worried that the people in the field are not well trained enough. We worry they’re not getting the right kind of oversight and supervision, and ABA over the last couple years has become extremely protocol-driven and mechanistic, simple in its application.

So we’re big advocates for what we call “Progressive ABA,” where we want staff to be well-trained, we want them to make decisions in the moment, we want them to be good teachers. We don’t want them to be protocol-driven or following rigid rules about how they teach the students. It takes a lot of training, it takes a lot more work, but I think it’s a superior way. We advocate for a naturalistic teaching. We want to work on things that are more meaningful, we don’t just want to work on academics and cognition, we work hard on play and leisure skills and social skills. They need a more rounded program, and sometimes ABA can be very narrow in its approach. So that’s kind of what we’ve been talking about today.

Can you tell us a little bit about the new Autism Partnership Center that will be opening in Beijing next year?

TM: We’ve been working in Hong Kong all those years, and mainland China is right on our doorstep, so we’ve often had phone calls from parents asking “can you come and provide services here?” The services and provisions in China are underfunded, the training and knowledge base is not extensive, there’s just not a lot of materials or training programs available. We wanted to see if we could build a center of excellence, so instead of parents hiring their own staff and us coming over to do training, flying up all the time, we wanted to have our own staff, train them for more extensive periods of time, and have people provide a much more comprehensive service like we do in Hong Kong. So that was the idea behind it.

Will it be a bilingual center?

TM: I think it will primarily be Chinese, but all of our consultants in Hong Kong speak English, so for expatriate families, they can certainly talk to us, there could be opportunities for us to send staff from Hong Kong to work with their children either in the office or where they live. But I’m imagining that a lot of the provision in the office will be in Chinese.

What resources are there in China for kids with autism, both expats and citizens?

TM: There’s a place here called Olivia’s Place, which is an agency specifically for expats, and that’s been here for some time, they provide some services. We [Autism Partnership] have provided some services, consultation and setting up some programs for expatriates here. In terms of the Chinese population, there’s a lot of non-profit organizations, and more so, over the last five years, for-profit organizations. A more common practice in China is that you go to a center, you do an hour of speech therapy a week, you do an hour of occupational therapy a week, you do a group. It’s not very intensive, it’s kind of an eclectic model of treatment.

You mentioned that Autism Partnership does some consulting work. What does that look like?

TM: We usually consult directly with parents. Depending on where the child is at, they may be in school, so if they have somebody who goes to school with them, we would help to train that person, we would provide the program, go in and watch what they’re doing in the school, work with the teacher and the aid to provide the program in a school setting. For a young child, we might be working at home and help the parents to find some staff or provide the staff. We have a number of parents who do that kind of model, because they’re having difficulty finding anything here. I’d imagine if you’re an expat, there aren’t a lot of early, intensive programs you can join that are in English.

How can people train to work with children with ASD?

TM: The best way to do it is to join an agency that provides great training. There’s some stuff you need to read and understand, as a didactic position, but the real learning occurs when you have somebody talk about a concept and then to sit down and demonstrate, and then actually do it, and have someone there to say, ‘that was good,” or “that wasn’t so good, you need to adjust and do it like this.”

There are qualifications you can obtain. There’s a board called the BCBA, which means you become a Board Certified Behavior Analyst, and there’s different levels of that training, but it’s a bit more difficult to access in China.

But the best way is to work with a high level agency, and work with some people who have been doing it a long time, and who really invest in their staff training. That’s really where you’re going to learn the real skills.”

What about parents who don’t have the resources to get a specialist?

TM: We’re not advocates of parents being the interventionists for a number of reasons. It’s a dual relationship, you’re their parent but then you’re also their therapist. There are things you may need to do in therapy that are not the same kind of thing you would do as a parent. I think it’s an enormous pressure on a parent to not only have a kid with autism, but to have to work with the child thirty hours a week on top of their daily duties, and feel the responsibility that the outcome of their child is resting on their shoulders.

But there are things parents need to learn. I think coming to a workshop like today is really helpful and informative for parents. We do some workshops that are practical, and more about what parents need to be doing at home. So if there’s problems like he/she doesn’t eat any food, or only eats bread, or there’s toilet training issues, or behavioral issues in the community, parents need to be knowledgeable about that and have practical skills, so we have some hands on training courses for those parents. But it’s really more on the day to day, as opposed to training them to be the interventionist.

What does the future of ABA look like?

TM: As I mentioned before, we’re worried about the field for the future because we feel it’s going to be dominated by less clinical intention and more profitability. And we’re worried that in the future, people will look badly on our profession, that the work will not have been done well, and people will come to hate what we do because of bad practices. So we hope we can continue to advocate for higher quality and better training.

Do you think the attitudes in China towards special needs and atypical behaviors are changing?

TM: I find that the parents in China are some of the most worried, anxious, and devoted parents, to be honest. As a group, they will contact us and say, “Alright, we’re going to do whatever we need to do, what do we need to do?” I think they’re often portrayed as a culture of being very reserved, not wanting to get help, they’re in denial, and that certainly occurs, but it occurs in all cultures. But to be honest, we find the families here are very passionate and keen to get services, to get their kids in treatment, and to mediate the problems. Especially with the parents I’m seeing who are 30, 35 years old, the younger generation. So yeah, I don’t think I feel that any more here than I do in say, the United States.

We see families all the time in Hong Kong, where the moms moved to Hong Kong so that the kid can get services for a year or two, and they have to separate their family. In mainland China, many families move from different provinces to Beijing or Shanghai where they have an agency that can provide, and mom is living on her own, with the child every day, away from friends and family. So they’re pretty dedicated and committed to be honest.

Some therapists would argue that ABA is not the only, or even the best, approach to therapy. How would you respond to that?

TM: I think we have to look at the research. We can’t be guided by subjective opinion about what we think is good, or not good, in the same way that we deal with medicine. We really need to have some science behind those claims and those evaluations. For example, some kids with autism are going to improve over time, not because of the therapy they’re receiving or the diet they’ve been eating, but because of maturation, they’ve gotten older. So you have to factor that in when you’re doing research.

ABA is a very well researched topic in the area of early intervention. Many many studies have shown the effectiveness of the approach. There aren’t many other therapies that have the same level of evidence that support that they’re as effective or more effective. There are many therapies today that are well-practiced that have shown not to be effective, but they’re still practiced just cause that’s what people do. And you’ll go to different countries and you’ll see how the culture of the country affects what services are available. For example, you can get acupuncture treatment for children with autism in Hong Kong, it’s quite common, but if you go to Los Angeles, it’s probably not widely available. So it’s not really based upon the effectiveness of that treatment, it’s based upon cultural values or other influences.

But for me it’s just a question of where’s the science? So don’t listen to my own opinions, but let’s look at the research. If you’re saying that ABA is not the only therapy, then you need to show me a research study that shows the combination of these therapies was superior to ABA alone. But if you’re doing five different therapies, it’s hard to know which one is working, that’s why when they do the research, they have to take those variables out. So again, I’d say we have to look at the research.

Photos: Drew Pittock, Autism Partnership, Pixabay

Our recent post about a Beijing mom’s search for the therapy needed by her young son who has been diagnosed with Autistic Spectrum Disorder (ASD) provoked much discussion. Among those who contacted us was Eva Ma, a professional working in the field who wanted to emphasize that Applied Behavior Analysis (ABA) is not the only therapy suitable for children with ASD. We asked her to tell us more.

Can you tell us about your background and training?

EM: I am an Occupational Therapist (OT). I was born and raised in Hong Kong, but I went to the US for my college education, and stayed on there for 26 years. I came to Beijing in August 2015 and worked as an OT at Olivia’s Place, and I’ve just moved to Hangzhou.

What sort of therapeutic approaches do you recommend for children with ASD?

EM: You need to look at the whole person, not just one aspect of their limitations. In the West you might have a physical therapist, a speech therapist, and an occupational therapist, and they may be doing the same or similar tasks but looking at different things. For example if the child is playing with a ball, a physical therapist might be looking at their balance, a speech therapist will be listening for whether they can ask for a bigger or smaller ball, and an OT might be looking at how they respond to their environment, such as whether they can follow directions when it’s noisy.

We use a play-based approach, typically driven by intrinsic values. We like to develop children’s internal drive, to have an idea for play, and executing that idea, adjusting according to their thoughts or feelings. We like to work in a natural environment, in a home or school setting. It’s about consistency, about learning steps and practicing them until the child feels confident, and able to go on to the next challenge level.

What’s your view of ABA?

EM: It’s one of the methods used, but it’s not the only one. It’s a very linear approach: the child does a task and they get a reward. Often food is used with younger children. But it can be too restrictive, it’s training a child in one moment of time to do certain things. Children with autism may not able to generalize that information. It may look like they can answer the question, but in real life they are not able to use the information effectively, functionally. So they may be able to count to 20, but if I say “go down the corridor to room number 12 and get a book,” are they able to scan the numbers, identify “1 2” as twelve, identify the book and bring it out?…

But you can understand that a parent who has seen their child make progress after a period of frustration will take a more positive view of ABA?

EM: In the US there’s a lot of research on ABA, and they’re able to “prove” it works by picking data every time the child gets something right. Based on those papers insurance companies say “ABA works.” For parents relying on just insurance, of course they’ll go for something that’s covered. One hour of occupational therapy can cost USD 100, so if you have to copay for 20 hours… you wouldn’t pick OT! We use a play-based approach, which is more difficult to measure. We do have a few studies showing it works, but we don’t go around advertising ourselves very well! And we prefer to work in a natural setting, in the home or school. But if support is provided in school insurers can say it’s education-related and refuse to cover it. Therapy has to take place in a medical center or clinic, which means taking the child out of school, dealing with travel and traffic…

How do you see provision of services for children with special needs in China?

EM: People think China is rich now, but medical care is so behind in the human aspect. Money can buy the latest technology like MRI scanners, but the hardest part is human resources. There’s a gap for a therapeutic approach. Expats often come thinking there should be services, but if you have a child with any kind of disability you can be quite isolated. Many schools are struggling to accept students with even mild learning difficulties or autism, because there’s not enough support. Sometimes schools have to be honest, and have to ask the child to leave the class or leave the school. I know some parents who just couldn’t do it, and had to go back to the west.

The stigma of having a disability is still so strong. If you go to a middle class Chinese school there usually isn’t any special education or therapy. And autism is not a visible disability, so people think the child is dumb or naughty. A lot of Chinese parents will still reject the idea that child needs extra help. They’ve put all their hopes and dreams on one child, and they’re not prepared to feel their child is not perfect. Their journey is becoming aware, appreciating their child for who they are, and accepting help.

What needs to be done to put more services in place?

EM: It will be slow, because culturally it’s not comfortable. People want to be the same, blend in. We need advocacy, more parents asking for help like the mom in your story. I hope all this will evolve. Younger Chinese people going overseas to university might come out as good special needs teachers or good therapists, and be ready to come back to China to work.

Another aspect is that a couple of schools are strengthening their learning support programs so they can accept children with special needs. The International School of Beijing (ISB) and Western Academy of Beijing (WAB) are both looking into their own programs. We need more inclusive education, instead of the idea of special schools for special children. Inclusion has benefits for both types of children.

I’m hopeful, but it’s still very challenging. My prediction is it will happen, but very slowly.

Photo: Uni You

A Beijing mom’s search for therapy for her autistic son has highlighted the shortage of special needs services in China.

Nicole Simon’s son was diagnosed with Autistic Spectrum Disorder at the age of 2. “When he was diagnosed I was told he needed behavioral therapy called ABA (applied behavioral analysis),” she told beijingkids. “It is the only approved treatment for kids with autism and also other behavioral disorders. I was told that the earlier kids get this therapy, the better the chance of their progress and they can lead productive, independent lives. They work on skills that do not come to these kids naturally like eye contact, speech, interactions with other children and adults and how to play appropriately.”

In the US, Simon’s son was receiving 36 hours of therapy a week, in what she describes as “a school-like environment with other kids.” He was making good progress, so before coming to China Simon carried out research into whether the therapy would be available here.

“The issue with this therapy is that it is very expensive,” Simon told us, “and the kids need many hours (depending on their level of functioning). It is also one-on-one, so if one therapist has a child who needs 40 hours then that is the only case they can accept. There are also different levels, and the highest [qualified]sometimes need to supervise cases with the lower level, which decreases the amount of kids they can help. In the US the maximum allowance for insurances is 40 hours per week. In China I was told that the maximum is 15 hours per week, and that is for extremely difficult cases.”

Another problem is the availability of qualified, English-speaking therapists.

“I worked on looking for therapists several months before moving,” Simon said, “and was told the only two places in Beijing that had this therapy were Olivia’s Place and The Learning Frontier. I visited both places in May. The Learning Frontier only had one English-speaking woman therapist, and she has now gone on indefinite medical leave and this location provides no ABA services (at least not in English). Olivia’s Place has a high turnover of therapists. They do provide speech and occupational therapies, but the ABA is something I’m still trying to get my insurance and their billing to work out so that we can get evaluated. They only have one English-speaking therapist from Hong Kong currently and I do not know how many hours they would have available.”

Even when provision is offered, Simon said, staffing remains a problem.

“There is a new center opening early next year called Autism Partnership. They are staffing now and the Hong Kong location is responsible for this. They are having difficulties hiring staff, and especially English-speaking people. They train everyone themselves so I do not think experience in the field is the biggest issue. I have asked if I could assist in finding English-speaking therapists from abroad, and they said they are not open to that at this time because of the costs associated with visas and housing. I was hoping they would have space for my son in this center, but they said they cannot guarantee they will take any English-speaking cases.”

beijingkids contacted the Autism Partnership to find out what qualifications are required to begin the training. While bringing people from overseas is not currently viable, it may be that there are people already in China who are willing to train for what could be a rewarding career. However at the time of writing we have not received any response.

China has come a long way in a short time in terms of understanding of and support for children with learning difficulties. However Simon’s problem illustrates that there is still a severe shortage of appropriate resources, particularly for the international community. If anyone think they can help, or is interested in training as an ABA therapist, then contact us at beijingkids (WeChat ID: AndyKilleen), and we will try to connect you with the right people.

Photo: JoanDragonfly via Flickr

April 2 is the twelfth annual World Autism Awareness Day. It encourages member states of the United Nations to take steps to raise global awareness of people with Autism Spectrum Disorder throughout the world.

According to the report, there may be more than ten million people with autism in China, which includes more than two million under 14 years old, and the number is increasing by nearly 200,000 every year. More policies and regulations have been announced in recent years. The Beijing Association for Rehabilitation of Autistic Children has been committed to raising public awareness about autism since 1993, and has hosted many local events to call for action to improve social welfare for this special group of people. Recently, Beijing health authorities have also rolled out policies to tackle mental health problems and neurodevelopmental disorders.

On March 31, a public welfare event entitled “Just Like You” was co-hosted by China Social Welfare Foundation, Beijing Association for Rehabilitation of Autistic Children, Beijing BISS International School (BISS) and ETU Education with the aim of raising public awareness about autism. It is now in its twelf^th consecutive year.

It began with a sale of paintings and artworks by BISS students and children with autism, and the most memorable part of the event was the coming of age ceremony for senior students of BISS International School and the older autistic children. A total of RMB 43,000 raised from the auction of the paintings will be allocated to the autistic artists and the rehabilitation of autistic people through the China Social Welfare Foundation.

In addition, our sister brand Jingkids has provided the following list of international schools which provide special education:

Let’s Play Daycare Center: 6508 0898

3e International School:   6437 3344 

House of Knowledge：400 6507 747

The International Montessori School of Beijing: 6432 8228

Western Academy of Beijing：5986 5588

International School of Beijing：8149 2345

The British School of Beijing, Shunyi: 8047 3558

Photo: Kim Jin via jingkids.com
Reference: jingkids.com, People’s Daily

We at beijingkids did not just want to write about special needs kids in Beijing. We had a vision to make pictures of these children, simply showing us their hobby or living out their wildest dreams. We spent a long Sunday at Dave’s magical photo studio to make these visions come true. The coordination of this day was a long and challenging journey, but we couldn’t have been more pleased with the outcome. You might think that these kids are the lucky ones to be photographed by one of the best photographers in the city, but we walked away feeling even more lucky. We got to spend beautiful one-on-one time with the six kids that make these pictures shine, and we were inspired by their loving and energetic parents. These families are the ones that gifted us with something we had never anticipated; a window into the lives of these fearless children who are constantly pushing themselves to overcome their unique challenges. Though we are different, we are also the same.

Dian Dian (Age 14)

Along with being a big brother to his loving sister, Dian (14) attends Xinyuan Xili Primary School in Beijing. He was one of the most patient models we have ever worked with. Without speaking, we could see he adores and loves his mother, drawing comfort from her touch. Dian is a lover of literature and reads anything he can get his hands on. No magazine or book is safe with him around. His parents are also passionate about reading so this a hobby that’s shared by the entire family. Dian has autism and loves to draw and play basketball; so for his photo spread, we had him relaxing under a tree with two of his favorite things, books and a basketball.

David Wang (Age 7)

David (7) is a first-year student at Olive International School in Beijing. David is a lover of Chinese poems, playing cards, horseback riding, swimming, and bicycling. David can’t walk on his own but that does not stop him from going around with a smile on his face, and his energy and eagerness to learn are tangible. He was a natural during the photoshoot, and we watched with amazement as he rode off without using training wheels for the first time. David was born prematurely and has cerebral palsy. After the photoshoot, he continued with homework reading English, and we were amazed by his knowledge, and willingness to keep studying even on a Sunday.

Photo: Dave’s Studio

This article appeared on p46-51 of beijingkids March 2018 issue.