Moral hierarchies within autism parenting: Making parent-therapists and perpetuating disparities within contemporary China

Abstract

Drawing upon 18 months of ethnographic fieldwork in China from 2013 to 2014, this article argues that moral hierarchies within autism parenting in fact reproduce local socioeconomic inequalities. In China, medical specialists, special education teachers and prominent parent advocates attempt to manage autism in a context of scarce resources by teaching parents how to serve as their children’s lifelong therapists. Yet, by focusing primarily on parents’ love for their children, while neglecting pragmatic issues related to social–economic disparities, autism advocates fail to understand the difficulties of parents with few socioeconomic resources. I illustrate my arguments by delving deeply into two case studies which illustrate both extremes of the moral hierarchy in autism parenting within China. In ethnographically attending to how parents are made into behavioral therapists and the moral hierarchies within autism parenting in China, this paper describes a culturally specific adoption of ABA. This article argues that scholars and local disability advocates need to pay closer attention to local particularities, including cultural histories of parenting, as well as the complex interactions between disability and social and economic inequalities, so as to better comprehend and address the immediate, existential, and long-range challenges which parents with little social capital face in managing autism.

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Fig. 1

Notes

  1. 1.

    Prior to China’s turn to postsocialism, autism spectrum disorder was not recognized as a psychiatric disorder. The Maoist regime saw psychiatric illnesses as caused by faulty political ideology and so denied the existence of autism in China (Feinstein 2010, p. 234). After Deng Xiaoping instituted the new policy of “reform and opening up” (gaigekaifang) in 1978, autism was diagnosed in the 1980s by Nanjing psychiatrist Dr. Tao Guo Tai and Beijing psychiatrist Dr. Yang Xiao Ling. Dr. Tao is always acknowledged in print as the first doctor to diagnose autism, but other doctors and parents I interviewed state that Dr. Yang also provided autism diagnoses during the early 1980s.

  2. 2.

    All informants and organizations in this article have been provided pseudonyms, in an effort to protect their privacy. I have also changed the cities/regions for some of my informants.

  3. 3.

    I acknowledge that Foucault paints a dark and repressive picture of modern governance since he uses the sites of asylum, prisons and schools in his analysis, but I will be highlighting the productive, rather than the strictly negative aspects of “technologies of the self” for this paper. In doing so, I follow the lead of scholars who argue that Foucault’s key concepts of “power” or “technologies of the self” are not purely repressive by highlighting the positive gains to the self [see Lupton (1997) and Frank (1998)]

  4. 4.

    The doctors, parent advocates and medical professionals make a distinction between the love they will teach these parents of autistic children and the love parents instinctively have for their children. The love they will teach with the help of ABA is describe as “zhenzhen ai nihaizi” (to truly love your child) or “zhenxin ai” (sincerely love one’s child) or “zhenai” (true love), with the emphasis on true (zhen), while the love parents already have instinctively for their children is described simply as “ai”. Such a distinction is particularly interesting since it is reminiscent broader social trends in China that suggest that psychology has come to govern and shape interpretations of the parent–child dynamic in contemporary China (see Kuan 2015).

  5. 5.

    Recent scholarship on intra-national economic inequalities; however, suggest that social-economic differences fracture communities who otherwise share the same national culture (Verbeek and Rodarte 2015; Atkinson et al. 2011; Lakner and Milanovic 2013).

  6. 6.

    While scholars such as Whyte (2010) have critiqued the hukou system for creating a two-caste system and others have critiqued the hukou system for treating rural residents are second-class citizens (see Chan and Zhang 1999; Cheng and Selden 1994; Solinger 1999; Zhang 2001a, b, c), my research project shows that the division between rural versus urban residents, as it is portrayed in much scholarly literature, over-simplifies the actual complexities of the hukou system. The hukou system is not completely deterministic: the few individuals who have gained admission to highly competitive schools such as Peking University or Tsinghua University or have been offered high status and highly lucrative jobs are able to switch their hukou registration to Beijing. At the same time, the hukou operates in conjunction with larger geographical disparities in China which means that the actual experience of an urban resident in a third-tiered city in obtaining housing, education and other social goods would be worlds apart from that of someone with hukou papers to cities such as Beijing or Shanghai.

  7. 7.

    The urban per capita annual disposable income was around 27,000 RMB (3800 USD), while rural per capita annual disposable income was around 8900 RMB (1280 USD) in 2013. As mentioned earlier in this paper, there are vast income differences not only between urban and rural residents, but also between urban or rural residents depending on which geographical region they were located at.

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Acknowledgements

The research in this article was funded by the National Science Foundation (Grant No. 1330398), the Wenner-Gren Foundation (Grant No. 8666), the American Council of Learned Societies, and MIT. I also sincerely thank Stefan Helmreich, David Jones, Heather Paxson, Amanda Chan, Molly Mullin, Anne McCants and Amah Edoh for their critical comments. I am most grateful to my three anonymous reviewers for their constructive and incisive comments, and to the editors for the helpful guidance.

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Correspondence to Emily Xi Lin.

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Lin, E.X. Moral hierarchies within autism parenting: Making parent-therapists and perpetuating disparities within contemporary China. BioSocieties 14, 155–178 (2019). https://doi.org/10.1057/s41292-018-0123-2

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Keywords

  • Autism
  • Disability
  • Family care
  • Social contract
  • China