pp 1–24 | Cite as

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

  • Emily Xi LinEmail author
Original Article


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.


Autism Disability Family care Social contract China 



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.

Compliance with Ethical Standards

Conflict of interest

Emily Xi Lin has no competing interests in the research detailed in the manuscript.

Ethical Approval

This manuscript is comprised of original material that is not under review elsewhere, and the studies on which the research is based has been subject to, and approved by the appropriate ethical review at MIT’s Committee on the Use of Humans as Experimental Subjects.


  1. Atkinson, A., T. Piketty, and E. Saez. 2011. Top Incomes in the Long Run of History. Journal of Economic Literature 49 (1): 3–71.CrossRefGoogle Scholar
  2. Batson, A. 2010. Shining Light on China’s ‘Gray Income.’ The Wall Street Journal. Accessed 1 May 2017.
  3. Brezis, R., T. Weisner, T.C. Daley, N. Singhal, M. Barua, and S.P. Chollera. 2015. Parenting a Child with Autism in India: Narratives Before and After a Parent-Child Intervention Program. Culture, Medicine and Psychiatry. 39 (2): 277–298.CrossRefGoogle Scholar
  4. Cascio, M.A. 2014. New Directions in the Social Study of the Autism Spectrum: A Review Essay. Culture, Medicine, and Psychiatry. 38 (2): 306–311.CrossRefGoogle Scholar
  5. Cascio, M.A. 2015. Rigid Therapies, Rigid Minds: Italian Professionals’ Perspectives on Autism Interventions. Culture, Medicine and Psychiatry. 39 (2): 235–253.CrossRefGoogle Scholar
  6. Chan, K.W., and L. Zhang. 1999. The Hukou System and Rural-Urban Migration in China: Processes and Changes. China Quarterly 160: 818–855.CrossRefGoogle Scholar
  7. Cheng, T., and M. Selden. 1994. The Origins and Social Consequences of China’s Hukou System. The China Quarterly 139: 644–668.CrossRefGoogle Scholar
  8. Chou, R.J.-A. 2011. “Filial Piety by Contract? The Emergence, Implementation, and Implications of the ‘Family Support Agreement’ in China. Gerontologist 51 (1): 3–16.CrossRefGoogle Scholar
  9. CriEnglish 2014. Average Annual Salary in Beijing: 69,000 Yuan. Accessed 1 May 2017.
  10. Dawson, M. 2004. The Misbehaviour of Behaviourists: Ethical Challenges to the Autism- ABA Industry.” Michelle Dawson. Accessed 1 May 2017.
  11. Di Lienardo, M. 1987. The Female World of Cards and Holidays: Women, Families, and the Work of Kinship. Signs 12 (3): 440–453.CrossRefGoogle Scholar
  12. Dikotter, F. 1996. Culture, ‘Race’ and Nation: The Formation of National Identity in Twentieth-century China. Journal of International Affairs. 49 (2): 590–651.Google Scholar
  13. Douglas, P. 2010. Problematising Inclusion: Education and the Question of Autism. Pedagogy, Culture and Society 18: 105–121.CrossRefGoogle Scholar
  14. Elsabbagh, M., G. Divan, Y.J. Koh, Y.S. Kim, S. Kauchali, C. Marcin, C. Montiel-Nava, V. Patel, C.S. Paula, C. Wang, M.T. Yasamy, and E. Fombonne. 2012. Global Prevalence of Autism and other Pervasive Development Disorders. Autism Research 5 (3): 160–179.CrossRefGoogle Scholar
  15. Erickson, R.J. 1993. Reconceptualizing Family Work: The Effect of Emotion Work on Perceptions of Marital Quality. Journal of Marriage and the Family. 55: 888–900.CrossRefGoogle Scholar
  16. Farmer, P. 2001. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press.Google Scholar
  17. Feinstein, A. 2010. A History of Autism: Conversations with the Pioneers. London: Wiley-Blackwell.CrossRefGoogle Scholar
  18. Fong, M.W.L. 2009. Digital Divide Between Urban and Rural Regions in China. The Electronic Journal of Information Systems in Developing Countries 36: 1–12.CrossRefGoogle Scholar
  19. Fong, V. 2004. Only Hope: Coming of Age under China’s One-Child Policy. Palo Alto: Stanford University Press.Google Scholar
  20. Foucault, M. 1988. Technologies of the Self: A Seminar with Michel Foucault. Amherst: University of Massachusetts Press.Google Scholar
  21. Frank, A. 1998. Stories of Illness as Care of the Self: a Foucauldian Dialogue. Health: An Interdisciplinary Journal for the Social Science of Health, Illness and Medicine 2 (3): 329–348.CrossRefGoogle Scholar
  22. Gluckman, M. 1963. Gossip and Scandal. Current Anthropology 4 (3): 307–316.CrossRefGoogle Scholar
  23. Greenhalgh, S. 1988. Intergenerational Contracts: Familial Roots of Sexual Stratification in Taiwan. In A Home Divided: Women and Income in the Third World, ed. D. Dwyer and J. Bruce, 39–70. Palo Alto: Stanford University Press.Google Scholar
  24. Greenhalgh, S. 2003. Planned Births, Unplanned Persons: ‘Populations’ in the Making of Chinese Modernity. American Ethnologist 30: 195–215.CrossRefGoogle Scholar
  25. Greenhalgh, S., and E.A. Winckler. 2005. Governing China’s Population: From Leninist to Neoliberal Biopolitics. Palo Alto: Stanford University Press.Google Scholar
  26. Grinker, R. 2007. Unstrange Minds: Remapping the World of Autism. New York: Basic Books.Google Scholar
  27. Ha, V.S., A. Whittaker, M. Whittaker, and S. Rodger. 2014. Living with Autism Spectrum Disorder in Hanoi, Vietnam. Social Science and Medicine. 120: 278–285.CrossRefGoogle Scholar
  28. Hacking, I. 2006. Making Up People. London Review of Books, August 17.Google Scholar
  29. Hochschild, A. 1983. The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press.Google Scholar
  30. Howlin, P., S. Goode, J. Hutton, and M. Rutter. 2004. Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45: 212–229.CrossRefGoogle Scholar
  31. Ikels, C. 1993. Settling Accounts: The Intergenerational Contract in an Age of Reform. Chinese Families in the Post-Mao Era, 307–333. Berkeley: University of California Press.Google Scholar
  32. Kang-Yi, C.D., R.R. Grinker, and David S. Mandell. 2013. Korean Culture and Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 43 (3): 503–520.CrossRefGoogle Scholar
  33. Kanner, L. 1943. Autistic disturbances of affective contact. Nervous Child 2: 217–250.Google Scholar
  34. Kipnis, A. 2006. Suzhi: A Keyword Approach. The China Quarterly. Accessed 22 September 2017.
  35. Kipnis, A. 2009. Education and the Governing of Child-centred Relatedness. In Chinese Kinship: Contemporary Anthropological perspectives, ed. S. Brandtstadter and G.D. Santos, 204–222. Abingdon and New York: Routledge Press.Google Scholar
  36. Kuan, T. 2015. The Politics and Ethics of Child Rearing in Contemporary China. California: University of California Press.Google Scholar
  37. Lakner, C. and Milanovic, B. 2013. Global Income Distribution: From the Fall of the Berlin Wall to the Great Recession. Policy Research Working Papers.Google Scholar
  38. Lovaas, I. 1977. The Autistic Child: Language Development through Behavior Modification. New York: Irvington.Google Scholar
  39. Lupton, D. 1997. Foucault and the medicalization critique. In Foucault, Health and Medicine, 1st ed, ed. R. Bunton and A. Peterson. London and New York: Routledge Press.Google Scholar
  40. Mani, A., S. Mullainathan, and E. Shafir. 2013. Poverty Impedes Cognitive Function. Science. 341 (6149): 976–980.CrossRefGoogle Scholar
  41. Mattingly, C. 2008. Reading Minds and Telling Tales in a Cultural Borderland. Special Issue: Troubling the Boundary Between Psychology and Anthropology. Ethos 36 (1): 181–205.Google Scholar
  42. McCabe, H. 2007. Parent Advocacy in the Face of Adversity Autism and Families in the People’s Republic of China. Focus on Autism and Other Developmental Disabilities 22 (1): 39–50.CrossRefGoogle Scholar
  43. McCabe, H. 2008. Autism and Family in the People’s Republic of China: Learning from Parents’ Perspectives. Research and Practice for Persons with Severe Disabilities 33 (1–2): 37–47.CrossRefGoogle Scholar
  44. Orsmond, G.I., Ling-Yi Lin, and M.M. Seltzer. 2007. Mothers of Adolescents and Adults With Autism: Parenting Multiple Children With Disabilities. Intellectual and Developmental Disabilities 45 (4): 257–270.CrossRefGoogle Scholar
  45. Phelps, K.W., S.L. McCammon, K.L. Wuensch, and J. Golden. 2009. Enrichment, Stress, and Growth from Parenting an Individual with an Autism Spectrum Disorder. Journal of Intellectual and Developmental Disability 34 (2): 133–141.CrossRefGoogle Scholar
  46. Sarrett, J. 2015. Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA. Culture, Medicine, and Psychiatry. 39 (2): 254–276.CrossRefGoogle Scholar
  47. Silverman, C. 2011. Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton: Princeton University Press.CrossRefGoogle Scholar
  48. Solinger, D. 1999. Contesting Citizenship in Urban China: Peasant Migrants, the State, and the Logic of the Market. Berkeley: University of California Press.Google Scholar
  49. Solomon, O., and N. Bagatell. 2010. Autism: Rethinking the Possibilities Introduction. Ethos. 38 (1): 1–7.CrossRefGoogle Scholar
  50. Sun, X., C. Allison, B. Auyeung, F.E. Matthews, S. Murray, S. Baron-Cohen, and C. Brayne. 2013. Service Provision for Autism in Mainland China: A Service Providers’ Perspective. Research in Developmental Disabilities 34 (1): 440–451.CrossRefGoogle Scholar
  51. Tamara, J. 2009. Cultivating Citizens: Suzhi (Quality) Discourse in the PRC. Positions: East Asia Cultures Critique 17 (3): 523–535.CrossRefGoogle Scholar
  52. Tom, A. 1993. Women’s lives complete: Methodological concerns. In Women, Work, and Coping: A Multidisciplinary Approach to Workplace Stress, ed. B.C. Long and S.E. Kahn, 32–50. Quebec: Mcgill Queens University Press.Google Scholar
  53. Verbeek, J., and Rodarte, I. 2015. Increasingly, Inequality within, not across, Countries is Rising. Let’s Talk Development. Accessed 1 May 2017.
  54. Wallace, J. 2015. Here’s why it matters that China is admitting that its statistics are ‘Unreliable’. The Washington Post. Accessed on 1 May 2017.
  55. Wing, L., and J. Gould. 1979. Severe Impairments of Social Interaction and Associated Abnormalities in Children: Epidemiology and Classification. Journal of Autism and Developmental Disorders. 9 (1): 1–29.CrossRefGoogle Scholar
  56. Whyte, M.K. 1999. Social Change and the Urban-Rural Divide in China. The Irish Asia Strategy and Its China Relations 1999–2009, 45–60. Amsterdam: Rozenberg Publishers.Google Scholar
  57. Yan, Y. 2003. Private Life under Socialism: Love, Intimacy, and Family Change in a Chinese Village, 1949–1999. Palo Alto: Stanford University Press.Google Scholar
  58. Zhang, L., and A. Ong (eds.). 2008. Privatizing China, Socialism from Afar. Itaca, NY: Cornell University Press.Google Scholar
  59. Zhang, L. 2001a. Contesting Crime, Order, and Migrant Spaces in Beijing. In China Urban: Ethnographies of Contemporary Culture, ed. N.N. Chen, C.D. Clark, S.Z. Gottschange, and L. Jeffery. North Carolinia: Duke University Press.Google Scholar
  60. Zhang, L. 2001b. Strangers in the City: Reconfigurations of Space, Power, and Social Networks Within China’s Floating Population. Redwood City: Stanford University Press.Google Scholar
  61. Zhang, L. 2001c. Migration and Privatization of Space and Power in Late Socialist China. American Ethnologist 28 (1): 179–205.CrossRefGoogle Scholar
  62. Zhang, L. 2008. Private Homes, Distinct Lifestyles: Performing a New Middle-Class. In Privatizing China, Socialism from Afar, ed. L. Zhang and A. Ong, 23–40. Itaca, NY: Cornell University Press.Google Scholar

Copyright information

© Macmillan Publishers Ltd., part of Springer Nature 2018

Authors and Affiliations

  1. 1.Singapore University of Technology and DesignSingaporeSingapore

Personalised recommendations