Around the world, the number of children diagnosed with an autism spectrum disorder, or ASD, is increasing rapidly. In China there are estimated to be at least five million autistic children. Whether this increase is due to increased awareness of autism – previously, many autistic children would simply have been labeled as retarded and many children with disorders such as Asbergers may have just been called "strange" or "awkward" – environmental factors, vaccinations, or something else, it is clear that there are more cases of autism and other ASDs on the planet than ever before, and China is no exception.

Recognising and accepting autism

China is not a good place to be born "different." Everyone has heard of infant girls being abandoned to orphanages, but disabled children often end up in orphanages and foster homes as well. Sometimes their parents can’t afford to pay for the medical and therapy costs, sometimes they are afraid of the social stigma attached to caring for a disabled child, and often they simply do not want the family’s resources "wasted" on an "abnormal" child. Thousands of disabled children are abandoned each year and languish in orphanages that are under-funded and ill equipped to deal with their needs.

Austism, however, is not evident from birth. Usually the first signs of autism or ASDs start to appear around the time a child should become verbal, around one year old, but even then, since the scope of "normal" is very large, it is often impossible to definitively diagnose a child as autistic until closer to the second or even third birthday. However, without evaluation programmes in place to track a child’s developmental progress ("well baby" checks such as we have back home often are not available to Chinese parents, and, when they are available, they are sometimes inadequate, focusing more on physical growth than neurological development), and without state sponsored early intervention programmes, many children fall through the cracks. Parents, especially one-child parents who lack any basis for comparison, are often in denial as to their children’s differences. It is usually when a child first enters, or attempts to enter, kindergarten (which typically starts in China at age three, although some schools will take children as young as 18 months), that a child’s difference is brought to the attention of the parents, at which time the school often faces an uphill battle convincing parents that their child needs help.

Many parents of autistic children in China deny that their child needs help. They may have been told by doctors (who are not experts in or experienced with ASDs) that their child is normal because he can walk and talk and is growing normally. They may be told that their child needs a "treatment" and after the treatment is finished they will be told that their child is "cured." Few parents, no matter where they come from, want to face the idea that their child has a condition that is incurable and which will severely affect the child’s chances of living a normal life. After all, in China it is unlikely that a severely autistic child will succeed in the public school system, which is strictly regimented and leaves little room for children with disabilities, or go on to college. Many parents do not want to accept that fate for their child, and so they often cling to the illusion that their child is simply young, or misunderstood, that he’ll grow out of his quirks, that he’ll get better, that the teacher doesn’t like him or the school doesn’t know how to deal with them.

A failure of the community

Part of this denial on the part of the parents stems from a lack of government and community support for disabled children. Kids who are diagnosed as being different do not have the advantage of early intervention or IEPs (individual education plans) that children in countries like the USA or the UK do. Families with autistic children may find local public kindergartens unwilling to accept or accommodate their child, and may have to turn to expensive private kindergartens as their last hope. Private kindergartens tend to be more lenient as to which children they will accept, but they too lack the proper resources to truly care for children with ASDs. Teachers will almost certainly not have been trained in special education, and most kindergartens, private or not, are not keen on opening special education classes because, they feel, according to one local private kindergarten, parents who are in denial or in the beginning stages of accepting their child’s condition do not want place their children in a class that is labeled as being different.

For private kindergartens a special education class is not always cost effective either, as the three or four autistic children in a school of 150-200 children cannot defray the costs required in hiring specialised teachers and purchasing the necessary materials for such a class. Therefore, autistic children, if they can find a place in a kindergarten at all, may face teachers who are indifferent to their needs or simply unable to deal with them. Said one teacher, "of course all teachers hope that their students are normal. It is easier that way." In smaller, less well regulated schools, especially in poorer less developed areas, the teachers may be outright abusive to children who do not listen well or who are prone to frequent tantrums, as autistic children can be. Due to the sheer volume of children in most local kindergartens, kids are expected to follow strict rules and schedules, and a lack of understanding about why an autistic child may insist on doing things in a certain way can lead to conflict with teachers.

Sadly, however, in most cities options outside of traditional kindergartens are limited to institutional settings, which are not necessarily the best place for autistic children to reach their potential either. In big cities such as Beijing and Shanghai there are a few centers such as the Stars and Rain Center in Beijing, and there are a few kindergartens that offer short term "training" programmes to help these children learn coping skills, but very few long term solutions. It goes without saying too that any help these parents seek for their children they must pay for out of their pockets, and the public school system is not required by law to accommodate children with disabilities as the school systems in most Western countries are. Most parents with autistic children in China face a long and lonely battle, and the outcome for these children is generally not positive, as most children end up being cared for by their parents at home with no outside help or special education programmes to assist them.

According to the Stars and Rain site, when their center was founded in 1993 there were only three doctors in the entire country who were qualified to diagnose and treat autism. Nowadays that number has grown to a whopping 100, with the quality of "treatment" these doctors will provide still deemed questionable. Stars and Rain is actually the first and remains one of the only privately funded non-profit centers for autism treatment and research.

If you know a parent struggling with autism or who suspects their child might need help, don’t hesitate to contact the Beijing Stars and Rain at http://www.guduzh.org.cn . 

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Keywords: autism in China treatment and centers for autism in China mental health in China ASD China Asbergers China