Autism diagnosis is increasing worldwide. This ethnographic study of the diagnosis and care of autistic children in China, a country in which the emphasis since the 1980s has been on producing small numbers of high quality children, and in which children are valued for the care they will be able to offer their parents as adults, asks how a western medical category is taken up and changed in a very different social setting. Bringing together anthropological and STS concepts and literatures, this study is innovative in its focus on families, organizations and the state in China.
This research will result in a dissertation and the production of a scholar well-trained in Chinese language and society. A better understanding of how the Chinese conceptualize and treat autism will provide a worthwhile comparison to the more "biological" understanding of autism prevalent in the United States and could provide a useful model for patient advocates in the US working to reduce the stigma of autism.
With possibly 400 million out of 1.2 billion people who might meet the criteria of autism in China, the care of autistic individuals has become a pressing family, social, and public concern. Not only has the incidence rate ranging from 11.2 per 10,000 individuals to 1 in 100 remained uncertain to this date, the reality that health-seeking behaviors in the form of autism diagnosis, as well as treatment are closely related to class, and other forms of wide-ranging urban-rural social disparities peculiar to China have remained under-studied. Based on 18 months of ethnographic research in homes, clinics, autism rehabilitation centers, and philanthropic organizations in provinces such as Beijing, Hebei, Hainan, Guangdong, as well as cities such as Qingdao, and Shenzhen, this dissertation examines the social meanings, and practices of autism caregiving in China. It also shows how patterns of autism caregiving distinctive to urban and rural families are produced and rationalized. While China’s biomedical institutions, humanitarian aid organizations seek to foster new autism parental practices and ethics which they determine as signifying true parental love, and scientific modernity, my research shows that these efforts in fact decontextualize the work of caring from the lived realities that attend the lives of families living with autism in contemporary China because it does not take into account the background of parents whose access to socal services in the form of healthcare, or education is very much stratified from birth. Furthermore, in a country where families have little trust in the healthcare system, more information about autism, without the provision of effective social services, leads to more insecurity and emotional stress experienced by caregivers. A better understanding of how these patterns reveal stratified forms of care for disabled persons will provide i) useful counterpoints to the idea that advocacy is best served by better information dissemination about the disorder.
