Emily Cerimele Asian Studies and Chinese Distinction Portfolio
Emily Cerimele
Asian Conversations III
Professor Kucera
24 May 2021
Not Enough Support: Life for Children with Autism in China
The lack of resources for people with disabilities, especially people with intellectual and developmental disabilities, remains an issue worldwide. As a Chinese and Psychology double major with an Asian Studies concentration, I am interested in going into a career working with people with intellectual and developmental disabilities. Because I really enjoy learning the Chinese language and want to be able to use it in my career, I particularly want to work with a Chinese-speaking population. Mental health remains stigmatized all over the world, and China and Chinese culture are no exceptions. This stigma is even greater for people with developmental and intellectual disabilities. Lack of resources coupled with stigmatization creates an unfortunate, unfair situation for people with these disabilities. I hope to help create more resources and understanding for people with developmental and intellectual disabilities.
The area of intellectual and developmental disabilities encompasses a broad population and field of study, and this essay specifically focuses on providing an overview of the history and current condition facing children with autism and their families in mainland China. In China, a lack of research and recognition around autism persists. Autism continues to go underdiagnosed, and issues arise in the current treatments for autism. Cultural ideas create stigma around children with autism and often prevent parents from seeking help. Legislation has been created to ensure access to education, but children with autism are still too often excluded. Not enough resources exist or are accessible enough to provide these children with the intervention and education they need.
To begin with, throughout China, there exists a pervasive lack of knowledge surrounding autism. First diagnosed in 1982, autism to this day goes widely unrecognized, and many people still have never even heard of it. Autism was only legally classified as a disorder in recent years, and no official statistics exist to indicate just how many people diagnosed with autism live in China. This expansive lack of knowledge remains a major reason why autism in China goes heavily underdiagnosed. Only licensed psychiatrists in China can diagnose mental health disorders, but most of them lack the proper knowledge to diagnose autism. Most of them only know how to diagnose classic stereotypical cases of autism and fail to recognize cases of autism that are less severe (Huang et al., 2012). Furthermore, the psychological scales used in China to assess possible autistic traits in children remain outdated even though newer, more effective scales have been created (Wang et al., 2019). In addition, most psychiatrists work in large cities, making it extremely difficult for families in rural areas, which constitute a significant portion of the population, to access that type of care and obtain a diagnosis for their child. Fortunately, this problem of autism going undiagnosed is slowly improving. In recent years, the number of people in China who have received an official diagnosis of autism has been increasing, and more children are getting diagnosed at a younger age (Huang et al., 2012).
Even when children receive an autism diagnosis, however, medical professionals in China fail to utilize the most effective treatments. A comprehensive approach including several aspects such as education, psychotherapy, and medical treatment is considered best in treating children with autism (Wang et al., 2019). Research in the West has shown that Applied Behavior Analysis (ABA) is the most effective behavioral intervention. There has been little research, however, into its effectiveness in a Chinese context, as cultural contexts may impact the effectiveness of certain treatments, and so its use remains uncommon in China. China still utilizes treatments for autism that have been proven ineffective, including music, play, and massage therapies. Furthermore, little research has been carried out testing the effectiveness of medications that are often used to treat children with autism in China (Huang et al., 2012). Knowledge on autism needs to be expanded in China. Further research needs to be carried out to better understand autism in the China to figure out how ways to best serve the needs of children with autism and find the best treatment options.
In addition, the financial ability of the family stands as the largest obstacle towards obtaining treatment for children with autism in China. Treatment options remain limited to what the family can pay for. Autism itself also compounds a greater financial burden than other disabilities. The Xiong et al. (2011) study found that, compared to other mental and physical disabilities, autism places the heaviest financial burden on the family. Cost of treatment can vary according to a host of factors, such as the child’s age, parents’ employment condition, and parent education level (Xiong et al., 2011). In addition, general health insurance does not cover autism, and the amount of government economic aid varies across different areas in China. Thus, most of the costs of raising a child with autism and obtaining medical care fall on the parents (Sun et al., 2013a). For an autistic child in China, whether they are diagnosed with autism and receive treatment for it mainly depends on the amount of wealth the family possesses.
As in all societies and cultures, attitudes towards disabilities in Chinese culture greatly impact the lives of children with autism and their families. It remains crucial, however, to exhibit caution in assessing the impact of Chinese culture on Chinese people’s attitudes towards autism. Culture is not the sole aspect that affects people’s attitudes towards autism, and Chinese culture impacts attitudes in both positive and negative ways. Certain cultural values, specifically values of social traditionalism, negatively impact views towards children with autism. Other aspects of Chinese culture, however, such as benevolence ( 仁 ) and justice ( 义 ) positively impact attitudes towards children with disabilities. Chinese culture is complex, and while this essay only focuses on the aspects that create negative attitudes towards autism, taking this complexity into account and realizing that Chinese culture also benefits those with disabilities in certain ways before making harsh judgements remains crucial (Zhang & Rosen, 2018).
The cultural shame around disability creates difficulties around having a child with autism. This shame manifests through the fear of “losing face”, compounded by the fact that intellectual and developmental disabilities face greater stigma than physical disabilities. In Chinese culture, parents shoulder the blame for their child’s disability (Chi, 2014). This shame makes it difficult for many parents to seek out treatment for their child. Many of these parents do not want others to know that their child has a disability. Some parents will not even send their child with autism to school in fear of others’ judgement (McCabe, 2007). The collectivist ideals present in Chinese culture, while they have many positive aspects, also help perpetuate the stigma around autism and other disabilities. According to these ideals, the behavior and actions of the individual reflects on the whole family. Children with autism also often deal with intellectual impairments and behavior issues, making them unable to perform up to standards of typically developing children. This in turn reflects badly on the family, especially the parents of the child (Chi, 2014).
For generations, Chinese families avoided this social stigma through the “out of sight, out of mind” approach. People with disabilities, including children with autism, were, and often still are, hidden at home and away from the community. They do not have educational opportunities and cannot engage in the community (Huang et al., 2012). Instead of seeking help, parents deny the problem, hope their child will outgrow it, or do their best to conceal it (Sun et al., 2013b). Fortunately, however, these traditional attitudes are slowly changing. More children are being diagnosed with autism, and more people acknowledge that they too deserve the opportunity to live a meaningful life (McCabe, 2007).
Since the 1980s, legislation for children with developmental disabilities including autism has greatly expanded. Since 2006, autism has been nationally recognized as a mental disability. The largest problem that still prevents children with autism from accessing services and resources, however, has to do with the significant ambiguity in the legislation. No policies directly address people with these disabilities. No policy specifically mentions autism or other developmental disabilities. Instead, autism is grouped together other physical and cognitive disabilities and addressed indirectly throughout different pieces of legislation (Wang et al., 2019). This ambiguity especially presents an issue in education. The 1986 Compulsory Education legislation states that all children are entitled to 9-year compulsory education, including children with disabilities. While it encourages schools to be inclusive of children with disabilities, it does not address this issue directly, provide clear guidelines on how to support these children, or promise any government financial aid to help support these children (Huang et al., 2012). Thus, while government legislation for people with disabilities has improved in the past few decades, there remains a long way to go to provide effective protection and resources to children with autism.
Furthermore, while education is legally available for children with autism, it often fails to meet their needs and proves difficult to access. One option for children with less severe autism includes Learning in the Regular Classroom (LRC), known in Chinese as 随班就读 (Suiban Jiudu). The goal of 随班就读 is to educate children with autism who can keep up with the normal school curriculum. In theory, the system provides more support in the normal classroom, but in most cases, it simply places children with autism and neurotypical children in the same classroom without providing children with autism with the additional individualized support and accommodations they need to succeed in the normal classroom setting. This can be attributed to several different factors. First, in China, the typical class size ranges between 50-75 students, making it nearly impossible for teachers to provide students with individualized support. Lack of teacher education around autism also presents an issue. Teachers in regular classrooms receive no training on how to best instruct children with autism (Huang & Wheeler, 2007). Even in larger cities where teachers often possess greater knowledge about autism, necessary funds to ensure accommodations for students with autism remain lacking (Wang et al., 2019). Furthermore, to help prevent children with autism from being expelled from school, they are not required to complete standardized tests and assessments. Teachers are evaluated by their students’ performance on these tests, and therefore may feel reluctant to allow a student with autism into their classroom because their scores may be lower. While this may help keep children with autism in normal schools, the result is that their progress goes unmeasured (Huang & Wheeler, 2007). Thus, there is no way of knowing if these children placed in normal classrooms are learning or merely existing there. Even if children with less severe symptoms of autism can attend regular schools, their needs for extra help and individualized support cannot be ignored if they are to succeed.
Special education schools exist as an option for children with autism who cannot attend regular schools, but problems exist in these schools as well. Since the 1990s, more special education schools have been built. These schools, however, are only located in larger towns and major cities. Children with autism living in rural areas are unable to attend these schools. The major problem with special education schools, however, is that they are not designed specifically for children with developmental disabilities such as autism. Their main purpose includes accommodating children with sensory impairments or mild to moderate physical disabilities or cognitive impairments. Teachers in these schools often do not have enough training or knowledge about autism to properly teach children with autism (Huang et al., 2012).
The inability of regular schools and special education schools to properly accommodate children with autism often deters them from allowing students with autism to enroll. Although legislation ensures that children have the right to 9-year compulsory education, no legislation forces schools to enroll them. Thus, both regular and special education schools often turn away children with autism (Wang et al., 2019). Most schools will not accept these children unless they have less severe symptoms, higher-functioning capabilities, and no official diagnosis of autism (Sun et al., 2013b). Teachers worry about the behavioral issues associated with autism, and how the child might disrupt class learning (Sun et al., 2013a). In regular schools, parents with neurotypical children often fear that possible disruptions caused by a child with autism will negatively impact their own child’s ability to learn. Education is extremely important in China. As part of the collectivist ideals of Chinese culture, a child’s success in school reflects on the parents and family, placing high importance and pressure on children’s success in school (Chi, 2014). The most effective way that parents of children with autism enroll their children in school includes utilizing their personal connections and relying on the help of someone they know with connections to the school to get the school to accept their child (Huang & Wheeler, 2007). Once enrolled in normal schools, however, children with autism do not often stay enrolled for long. Once their autistic behaviors and tendencies present any kind of issue, they often get expelled, with no alternative option for education (Sun et al., 2013a). Children with autism may receive an education through other means, such as through homeschooling, therapy, or rehabilitation centers. This, however, circles back to the financial issue, as these alternatives come at a high cost impossible for most families to afford (Wang et al., 2019).
Rising to address these issues in education and lack of resources, non-governmental organizations (NGOs) for children with autism have become increasingly prominent in China. These organizations address education and social welfare needs that the government fails to properly deal with. Historically, NGOs have had a complex relationship with the Chinese government. Since the 1980s, the government has increasingly accepted them as organizations to provide additional needed resources and aid for disadvantaged groups. NGOs for children and people with autism arose as a direct response to issues in education. Many of these organizations were established by parents to give their children with autism “somewhere to go” (McCabe & Deng, 2018). The educational programs provided by NGOs either replace formal schooling completely or help children with autism prepare to attend mainstream schools. One problem with NGOs includes the fact that most of them are in larger cities, making it difficult for families in rural areas to access their services. They also deal with a general lack of trust, as many people fear that their programs are low quality. Furthermore, finances continue to create an obstacle for families wanting to access NGO resources for their child with autism. Since NGOs do not receive support from the government, they rely on paid tuition to fund their organization, which unfortunately greatly limits access. NGOs, however, are also working to change attitudes around autism in Chinese society to hopefully one day expand educational resources and accommodations for children with autism (McCabe & Deng, 2018).
Resources and opportunities in China for children with autism have expanded over the past few decades, but there remains a long way to go. Gaps in knowledge, legislation, and access to education persist. Furthermore, it is important to change negative perceptions surrounding autism in China and increase education about autism so that people can have a better understanding of it and hopefully decrease the stigma surrounding it. Stigma around mental health and lack of support and resources, especially with concern to intellectual and developmental disabilities, is not unique to China, and remains an issue all over the world. In each culture, however, it must be approached on its own terms, utilizing the strengths of that culture to improve conditions for people with any sort of disability. People with disabilities are people too and deserve the opportunities, resources, and support to live their lives to the fullest.
References
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