Language is culture. It reflects a place’s history, values, attitudes, social structures, and even dynamics of power. How we express ourselves and describe the world around us shapes discourse and influences others perceptions. The words we use really do matter.
Chinese is a very interesting language to study in this respect. Chinese can be very literal. The word for computer is “electric brain”; airplane is “flying machine”. This direct and descriptive way of translating terms is especially important when it comes to translating terms for which there is not yet a lot of social understanding. This is a major frustration for me in my research – as it is on autism programs in China.
Autism is a developmental disability that is characterized by restricted repetitive behavior and impairments in social communication. Although it was first diagnosed in the West in the 1940s, the first diagnosis in China was not until 1982. Chinese has two words for autism, which are used interchangeably. The first word, more commonly used on the mainland, is 孤独症 (gūdúzhèng) – literally “loneliness disease”. Personally, I find this term very problematic.
Firstly, it is simply inaccurate. People do not have autism because they are lonely. Babies do not become autistic because of lack of parental affection, as the “refrigerator mother” theory claimed for decades in the United States. This is not to say that people with autism never get lonely. The difficulties with social interaction and prejudice can make people with autism feel very isolated. However, “feelings of loneliness” is not a part of the triad of impairments with language and communication, social interaction, and stereotyped behavior that make up autism.
Secondly, it is very confusing for people who do not have an understanding of autism and hear it for the first time. For example, a young Chinese woman who did not know anything about autism once asked me, “What makes people with autism this way? We are all a little lonely sometimes.” She had confused autism with depression, and who can really blame her. That would be a logical assumption to make if one were to take the name literally. In another instance, my professor of autism education at Beijing Normal University asked a class of psychology students what autism was and all they could say was “a child that is lonely” or “in their own world”.
The other Chinese word for autism is 自闭症 (zìbìzhèng) “closed-self disease”. This is the word that I use when talking about my research or when talking about my own experiences with my autistic sister. I use it because I think it is closer to the actual etymology of the word “autism” in English, which has its roots in “autos” Greek for “self”. This is also the word that is used in other Asian countries that use Chinese or Chinese characters, such as Taiwan, Hong Kong, and Japan.
Another linguistic issue with autism in Chinese is the word that is used to describe its treatment: 康复 (kāngfù) – rehabilitation. This gives many parents the mistaken impression that autism can be cured. This is difficult when they attend a 康复机构 (kāngfù jīgòu) – rehabilitation organization, many of which are short-term parent training or early intervention programs, and do not see their children magically become “normal”. While it is understandable that some autism professional in China do not want parents in China to lose hope for their children, it should be made clear that progress with children with autism is slow and difficult and, although great improvements in functioning can be made, people with autism will usually always be different. Even autism self-advocate icons such as Temple Grandin, who holds a PhD, do not consider themselves “cured” or “neurotypical”.
At a time when the Chinese public is just starting to become more aware of autism, misunderstandings are particularly dangerous. The language currently used to discuss autism in Chinese is confusing at best and stigmatizing at worst. This is why even my professor is pushing for a move away from “孤独症”, which she agrees is quite negative, and towards a single term which advocates can better define for the public. Navigating these linguistic currents is difficult for those of us working to improve autism services and awareness in China. Changing the way marginalized groups of people are viewed in society often means changing the words we use in describing them. Those of us that work in the field should shift from talking about “rehabilitation”, where the aim is a “cure”, and focus our discussions on education or therapy, where the goal is to help the individual reach his or her unique maximum potential. In order to create a culture in China that is inclusive of people with disabilities like autism, we must ensure that the language is reflective of the values we are trying to promote.