“As Long as There’s a Glimmer of Hope, I’m Willing to Try”: The Moral Experiences of Parental Pursuit for Autism Therapy in Urban China

ABSTRACT

In today’s China, countless parents embark on a journey of moral peril in search of treatment for their children with autism, navigating a bustling yet chaotic market of therapies. Based on 13 months of fieldwork in the Pearl River Delta, this study examines how the boom of China’s autism therapy industry has plunged parents, who are relentlessly striving for their children’s futures, into deeper vulnerability. I view the “ethics of trying” as parental enactment of their moral agency in seeking therapy and reveal how it serves as a moral engine for the industry’s growth in the early 21st century, as well as how it leads to moral tragedies for parents as new norms of therapeutic choice emerge with government and professional guidance compelling them to make optimal therapeutic choices within a critical developmental window. Although parental efforts to avoid “agent-regret” can paradoxically lead to significant remorse, the moral tragedy they encounter can also prompt reflection and reevaluation of their approach to their child’s condition.

KEYWORDS:

• Agent-regret
• autism
• China
• moral agency
• moral tragedy
• therapy market

Acknowledgments

This study was approved by the Institutional Review Board of The Chinese University of Hong Kong. I am deeply grateful to my interlocutors for sharing their lives and perspectives on autism treatment. I thank the anonymous reviewers for their constructive comments. Special thanks to Professor Ma Zhiying for organizing the Social Studies of Medicine Writing and Publishing Workshop in Asia. Michele Friedner, Junko Kitanaka, and Nikolas Rose for their valuable suggestions and encouraging feedback. Lastly, I am grateful to Teresa Kuan for her guidance when this article was a chapter of my dissertation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. Damihexiaomi 大米和小米. 2016. 一个自闭症孩子在训练机构的死亡 [A Child with Autism’s Death in a rehabilitation Institution]. Damihexiaomi. https://reurl.cc/67kAMM.

2. See Damihexiaomi 大米和小米. 2016. 写往天堂的信 用我的余生，每时每刻和你对话 [A Letter to Heaven: Conversing with You in Every Moment for the Rest of My Life]. https://reurl.cc/p5OXQd.

3. This 13-month research project (2017–2018) included participant observation at an autism therapy center and in-depth interviews with over 20 parents and more than 10 therapists, all with informed consent. Their names are anonymized in this article.

4. Some anthropologists distinguish between “ethics” and “morality” based on Foucault’s ethics and Durkheim’s morality (Faubion 2011; Lambek 2010; Zigon 2007). This paper adopts the stance of Mattingly and Throop (2018), employing these terms interchangeably.

5. The State Council’s Several Opinions on Encouraging and Guiding the Healthy Development of Private Investment (2010) explicitly encourages private capital investment in building specialized service facilities including rehabilitation centers for the disabled.

6. Chelation uses chemicals to remove excess toxins from the body, such as lead or mercury, which some people consider to cause autism. It has been used as a therapy for autism since the 1980s, especially by the supporters of the hypothesis that autism is associated with the thimerosal-containing vaccines.

7. Despite the gradual expansion of the eligible age range for subsidized support over the past few years, children without local hukou (household registration) remain excluded.

8. This article primarily addresses the moral perils faced by urban parents who have the resources and capability to actively seek treatments for their children. The moral challenges faced by lower-class rural families, often related to the scarcity of caregiving resources, are beyond the scope of this discussion.

Additional information

Funding

This research was supported by the PhD Support Scheme and a doctoral studentship from the Faculty of Arts, The Chinese University of Hong Kong.

Notes on contributors

Mengzhu An

Mengzhu An is a postdoctoral fellow at the School of Ethnology and Sociology, Yunnan University, and holds a PhD from The Chinese University of Hong Kong. Her research examines the moral experiences in caring for individuals with autism. Her scholarly interests encompass therapies for developmental disorders, care, and the politics of disablement.