The Problems Facing Autistic People in Modern China

Unlike in the old Soviet Union, autistic people in communist China, even during the time of Mao, lived in a world where the condition was more defined, more diagnosable, and more treatable. Thus, as a fully established condition, it’s much easier to pinpoint exactly how Chinese society as a whole views autism. Rather than a set of vaguely established traits, as it was in the early Soviet Union, autism in China has its own social and cultural impact, and isn’t simply bound up with other disabilities. It is, more than ever, a stridently relevant issue in the country.

Despite this, autism in China is still very much a fringe issue in comparison with the West. According to Ann X. Huang, Meixiang Jia and John J. Wheeler in their article ‘Children with Autism in the People’s Republic of China: Diagnosis, Legal Issues, and Educational Services,’ ‘most people in this country have never heard of the term’ autism, and ‘no nation-wide systematic epidemiological studies have ever been reported to exam the prevalence of this disorder in China.’ [1]

Special schools are scarce in China, with little access for those in rural areas (which is, of course, much of the country). Of those that exist, they tend to be for people with sensory and physical impairments, so ‘children with autism, especially those who are high- functioning (i.e., without significant cognitive and language impairments), usually fail to receive appropriate education they need there.’ [2] Indeed, they are often ‘reluctant to label a child as having autism if he/she is high-functioning and has less severe autism symptoms.’ [3]

Along with this, ‘children with normal or near-normal intelligence displaying serious behavioural challenges in schools are usually regarded as ‘"naughty," "having bad parenting experiences," or "unusual personalities," rather than being referred to as having a disorder.’[4]As with Stalin’s faction half a century before, Chinese society often refuses to view autism as a serious issue.

Because of the lack of state resources going into treating autistic people, many parents of autistic children have to rely on “NGO’s” (they are unable to register as such, but are NGO’s according to the international interpretation of such a term). [5] These NGO’s are often rather inadequate: although many claim that they use ABA (Applied Behaviour Analysis), very few professionals working for these organizations have received formal training in ‘‘real’’ ABA principles and techniques. [6] Those organisations that do, such as the Stars and Rain institute in Beijing, are costly. Stars and Rain offers a 10-week programme in ABA, but the cost of the treatment is 3000 yuan (about $361.) with families being responsible for travel and accommodations on top of this. For most families in China, this is too much. [7]

Clearly, life is not always easy for autistic people in China. Yet one could argue that these problems are hardly linked to socialism. Indeed, expensive medical programmes and uneven distribution of resources is something traditionally associated with libertarian capitalism. However, it’s the sense of stigma surrounding the condition, rather than the socio-economic difficulties, where the influence of socialism is most keenly felt.

Because of low public awareness, lack of social support, and cultural pressure into having a normal child, [8] those with autism in China, and their parents, tend to be stigmatised by the public and the press. In a study of the Chinese press between 2003 and 2012 by Lu Tang and Bijie Bie, it was shown that autistic people receive significant stigmatisation from the pervading public mood.

The term ‘stigma’, first defined by Erving Goffman in 1963 as “spoiled identity,” refers to a mark or an attribute that makes an individual discredited or rejected by society.[9] Stigma has social consequences, such as ‘exclusion from social life, decreased likelihood of being employed or getting married, and damaged marital and family relations’ [10] for the stigmatised; in this case both the autistic person themselves and those related to them (the parents). Indeed, in a survey of 309 Chinese parents of autistic children from a variety of geographic and socio-economic backgrounds, it was reported that 70% of said parents felt neglected by society and discriminated against, 38.7% felt anxious, and 17.4% felt guilty (Hua & Yang, 2013). [11] This stigmatisation, point out Tang and Bie, is likely due to China’s ‘traditional Confucian culture’ which places ‘great emphasis on conformity to norms to avoid bringing shame to the entire family.’ [12] This emphasis on conformity, while rooted in much older Chinese values, can only be enhanced by the participatory culture of socialism.

According to Tang and Bie, autistic people are most likely to be stigmatised as “patient” or “victim"—in both cases, weak and burdensome to society. They point out that ‘by representing children with autism as patients who cannot take care of themselves and who cause suffering to their parents, these news stories actually portray autism as a social and family burden.’ [13] The role of victim is arguably better—they are ‘worthy of sympathy and ... usually the target of philanthropic work" [14]—but are still presented as in some way weak and powerless, lacking in agency, and to be pitied. In the society of the 12 hours a day, six days a week work culture and overbearing collectivist ideology, where participation is viewed as a vital part of one’s identity, this is deeply damaging. These problems are, of course, far from unique to socialism. Yet they are enhanced by China’s collectivist culture, and in turn given concrete, organisational form in its socialist political system. Socialism may not cause the problem, but it makes it worse.

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Overall, in material terms, China’s problems surrounding autism largely stem from issues that have nothing to do with socialism. For example, its underdeveloped understanding of the condition likely stems from its status as a developing country (indeed, according to Anjali K Kapoor, autism awareness is similarly low in developing yet democratic India, with 12.6% of participants to an autism awareness survey there having heard of ASD compared to 100 % in the US). [15] Indeed, the poor distribution of resources and barriers to poorer families getting treatment are more obviously linked to China’s recent turn to state capitalism. Yet issues surrounding stigma are more complex. While they are present in the West, Chinese culture’s strong emphasis on collectivism, productivity, and community (arguably increased by its socialism) can only enhance unfavourable views on a condition known colloquially there as the “lonely disease.”