Autism In China: The Paper I Actually Turned In

Trigger Warning: Suicide, probably abuse

More focus was on the experiences of families than I would have liked for much of the paper because it's hard to get information on what actual Autistic people are saying there at the moment. It probably doesn't help that China didn't officially recognize autism as a disability until 2006, so there aren't that many Autistic adults in China who know they are autistic. Anyway, here it be:

Autism In China

                Imagine that the parents of your classmates held a protest. Imagine that this protest was because they thought you did not belong in the classroom with their children. For autistic children in China, this can be reality. In Shenzhen, one boy learned this the hard way. No matter that he was sufficiently intelligent to keep up in the class, that he was not aggressive, acceptance of autistic children was not to be. Nineteen parents signed a letter to the school asking for the removal of an autistic boy in their children’s class. They said that they “wouldn’t be friendly” if the school did not keep the boy out, and so the school did. First, they wouldn’t let him in, so he slipped in and took an empty desk. Then they took his desk, so he stood in the back of the room without a desk. They taught their children that it was acceptable to hurt people who are different for even a small gain, and they taught the expelled boy that he can never be accepted. The lesson stuck, and he jumped from a balcony, killing himself soon after.

                Within the week, another story of parents attempting to remove an autistic boy from his class came to light. His doctors have said that he has only slight autistic tendencies, and would be best for him to remain in regular classes. He was friends with some of his classmates, but the parents still wanted him removed, and the stress of this may be affecting him. His attempts to jump off the building, however, have been dismissed as attention-seeking and not as worrisome. Given the recent suicide of a student who faced a similar situation and was eventually removed from his class, the lack of concern over attempts at jumping from buildings seems unwise.

Education for people with disabilities is covered in China’s compulsory education regulations in that they are to receive an education, but students with developmental disabilities such as autism are often excluded from schools and from community life. “Out of sight, out of mind” was the attitude for centuries, and many autistic people are hidden at home. Attempts to include autistic people in China are fairly recent and face many obstacles, such as the parents in these two cases. These actions come from a society that cares far more about society than individuals, where anyone who differs from the norm faces significant obstacles to acceptance. Acceptance, of course, depends to some extent on both inclusion and on understanding of what autism even is, both of which are lacking in Chinese society.

                 With understanding so lacking and autism only officially recognized since 2006, there are no official statistics on the prevalence, though outside estimates range from 0.2% to the approximately 1% that we see in the United States for autistic spectrum disorders. Further complications arise from people in China not understanding what autism is, the large (35 months on average) gap between noticing autistic tendencies and any sort of diagnosis,

                Most Chinese people have not even heard of autism, and people living in rural areas are unlikely to have the resources to get a diagnosis or potentially helpful services, further reducing the known prevalence and further increasing the difficulties that autistic people may face. Among the professionals who do know what autism is, many have not heard of Asperger’s and many will say that a child has “autism-like symptoms” rather than that the child is autistic due to not understanding that classic autism is not the only type, not realizing even classic autistics are not necessarily as severely impaired as expected, and knowing the stigma attached to an autism diagnosis in China and elsewhere.  On top of this, evauations for autistic spectrum disorders are much faster in China than in the United States and do not involve observing the child in situations such as home or school, where autistic traits are likely to show. This leaves many autistic people without a label that would allow them to receive what services exist.

                Once it has been determined that a child is, in fact, autistic, there is much left to do. Will this child be one of the ones the experts think should be in a general classroom? What therapies will be best? In China, acupuncture is a common treatment for autism, as is massage therapy for the sensory processing differences that many autistic people have and applied behavioral analysis (ABA) based therapies, the most commonly used theory for creating behavior modification and educational programs for autistic people. Some parents attempt to enroll their autistic children in public schools that are designed for disabled students in general, only to find that these special schools are meant for students with physical disabilities or cognitive impairments, which many autistic people have neither of. Others take out loans to pay for private training programs with monthly costs often greater than their monthly salaries. Some of these are in hopes of normalizing their children, an impossible goal, while others have maximum independence and life skills as the goal, which can be achieved with proper education. In either case, the therapies tend to be expensive, and the pressure on families is great. Many experts note that the best time to “train” autistic children is from ages two to six, which is in line with the emphasis on early intervention that we see in the United States and other countries. However, there is an old Chinese superstition that children who talk late will grow up to be somebody important, which leads to many autistic children being diagnosed late, often after this window people assume to be most effective has past.

                Between the difficulties finding an education that works for the autistic child between the specialized schools that cater to a different set of difficulties than those faced by many autistic people, the expense of private schools and individualized therapies, the unwillingness of many teachers in general education to include autistic students despite the fact that autistic students who do poorly in their academics do not actually decrease the teachers ratings, the general stigma of autism in society among the few who know what it is, and the worries of what may happen after the child has grown up and the parents are gone, it is little wonder that autistic people and their families are both under higher stress than families without disabled members in China. Additionally families in China are generally allowed only one child (most exceptions and failures to enforce this policy occur in the same rural areas where an autism diagnosis is unlikely.) The high academic achievement that many Chinese parents use as their source of pride in their children is both unlikely to come from their autistic child due at least partially to discrimination and unable to come from the other children they are not permitted to have,  further increasing the stress that families are under.

                A big piece of the problem is the focus on high test scores at the potential expense of all other types of education, which leads to many issues with the Chinese educational system. Among them is the unwillingness of teachers to accept students with different needs as their standings are based on the test scores of their students. Removing the test scores of included students with disabilities from consideration has made some teachers more willing to accept some students with disabilities, but there are still many teachers unwilling to accept an autistic student in their mainstream classrooms. They are not legally required to do so, and the learning in regular classrooms movement in Chinese special education does not have the same requirement that students be educated in the least restrictive environment possible that the similar regulations in America have, meaning that many students are placed in segregated environments or segregated schools. Considering that research consistently shows both students with and without disabilities to perform better when students with disabilities are included as much as possible, this is not the ideal situation- both the autistic children and the neurotypical children would likely do better long term in the case of inclusion than in the current norm of keeping disabled children out of the main classrooms and in special schools.

                What resources there are are often prohibitively expensive. The Rainbow model, originally conceived of in the USA and currently based in Beijing, is one of the leaders in autism education in China, but sending a child to their centers costs $300 US per half day/wk as the monthly tuition…two years ago. That means that sending a child there four or five days per week costs more than the average family income before any other costs are considered.

                Some progress towards providing appropriate programs and towards acceptance into mainstream classrooms is beginning, however. Some of the public school districts are beginning to offer classes specific to developmentally disabled students as opposed to physically disabled or intellectually disabled students, which is an improvement on school-age autistic children being kept at home. Shanghai and Shenzhen in particular have begun offering these classrooms, though only to students who are from the district. Additionally, despite the unhappy ending, the fact that the teachers in Shenzhen were willing to attempt inclusion of an autistic boy has to be noted. Also in Shenzhen, autistic children were offered a workshop in which they could learn to make moon cakes with their families, a step towards including autistic people in at least some cultural activities. Some American resources on inclusion are being made available in Chinese, such as Paula Kluth’s Autism Checklist and You’re Going to Love This Kid. Landon Bryce’s recent I Love Being My Own Autistic Self currently has a translation in progress. With any luck, additional autism resources that take a neutral to positive view of autism and autistic people will lead to more acceptance of autistic people in China and more inclusion for them in mainstream classrooms.

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