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
