-I Caring for Star-Children: Autism, Families, and Ethics in Contemporary China by Emily Xi Lin M.Sc. University College London, 2008 B.A. National University of Singapore, 2003 Submitted to the Program in Science, Technology, and Society in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in History, Anthropology, and Science, Technology and Society at the Massachusetts Institute of Technology September, 2016 2016. All Rights Reserved. The author hereby grants to MIT permission to reproduce and distribute publicly paper and electronic copies of this thesis document in whole or in part in any medium now known or hereafter created. Signature of Author: Signature redacted History,Az rrTodgy, and Science, Technology and Society 15 August 2016 Certified by: Signature redacted, Stefan Helmreich EltingE. Morison Professor of Anthropology; Anthropology Program Head Thesis Supervisor MASSACHUSETS INSTITUTE OF TECHNOLOGY SEP 2 1 2016 LIBRARIES ARCHIVES 77 Massachusetts Avenue Cambridge, MA 02139 MITLibraries http://Iibraries.mit.edu/ask DISCLAIMER NOTICE The pagination in this thesis reflects how it was delivered to the Institute Archives and Special Collections. * The Table of Contents does not accurately represent the page numbering. Pages 7-14 were not submitted Certified by: Signature redacted Erica Caple James Associate Professor of Anthropology Thesis Committee Member Signature redacted Certified by: Heather Paxson William R. Kenan, Jr. Professor of Anthropology Thesis Committee Member Signature redacted Certified by: Susan Greenhalgh John King and Wilma Cannon Fairbank Professor of Chinese Society Social Anthropology Program Director, Harvard University Thesis Committee Member Certified by:_Signature redacted David Shumway Jones A. Bernard Ackerman Professor of the Culture of Medicine, Harvard University Thesis Committee Member redacted Accepted bySignature Christine Walley Professor of Anthropology Director of Graduate Studies, History, Anthropology, and STS Signature redacted Accepted by: Jennifer S. Light L irofessor of Science, Technology, and Society Professor of Urban Studies and Planning Department Head, Program in Science, Technology, & Society Caring for Star-Children: Autism, Families, and Ethics in Contemporary China by Emily Xi Lin Submitted to the Program in Science, Technology, and Society on 30 August 2016 in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Caringfor Star-Children:Autism, Families, and Ethics in Contemporary China studies the emergence and development of family caregiving for autistic children after 1982, when autism was first diagnosed separately in two cities in China. Based on 18 months of ethnographic fieldwork at municipal specialist hospitals, community child-health clinics, autism rehabilitation centers, and homes of families with autistic children across six provinces, this study explores how social stratification and the turn towards self-governance not only made autism as an epistemic object, but has intersected with that category to create new forms of inequality. In the absence of thorough and consistent state initiatives, moral economies around the child's potential have sprung up. Such moral economies lead actors such as medical professionals, philanthropic and educational organizations, and elite parent-activists to prioritize the young autistic child's potential, and to urge parents to become behavioral therapists for their own children. Parents are urged to let go of the normative societal expectation of recompense in the form of elderly care. I argue in this dissertation that the directives around these moral economies fail to take into account the local and gendered inequities that both produce, and constrain, parental diagnostic and therapeutic choices for their autistic children. Autism's spread as a diagnostic category has paralleled other spatial and economic disparities across the country. The economic reforms which began in 1978 and the devolution of many public functions to the purview of local governments have led to dramatic regional disparities with respect to economic opportunity and, the availability and quality of healthcare, education and social services. Where professional and parental elites in cities such as Beijing refer to autistic children through the valorized term "children of the stars" (a phrase chosen so as to reduce stigma), and are able to provide children in these locations with prompt diagnoses and early therapy, to date many healthcare workers and families responsible for nurturing children in less developed regions of China have not even heard of such a diagnostic category. Many families from rural or otherwise resource-scarce locations in China are not able to obtain a timely diagnosis, much less access therapy for their children. In managing care in landscapes of great disparity, families are turned into diagnostic and therapeutic internal migrants, as they travel across China in search of the appropriate doctors and therapy. I argue in this thesis that the post-socialist emphasis on choice, rather than care, in fact serves to legitimize neglect of the autistic adult and mother of the child. Autism advocacy rights which fail to take into account local forms of stratification thus serve to broaden the burden of care upon families. Thesis Supervisor: Stefan Helmreich Title: Elting E. Morison Professor of Anthropology; Anthropology Program Head 3 4 Table of Contents Acknowledgements 7 Prologue 9 Chapter One 15 Introduction Chapter Two 50 Producing Autism as an Epistemic Object in Landscapes of Inequality Chapter Three 87 Diagnostic and Therapeutic Internal Migrants Chapter Four 122 Tyranny of the Autistic Child's Tomorrow Chapter Five 163 "Truly Loving Your Child": The Autism Therapeutic Apparatus and the Making of Parent-Therapists in Contemporary China Conclusion 201 Care, Choice, Constraints and Capabilities Bibliography 208 5 6 77 Massachusetts Avenue Cambridge, MA 02139 MITLibraries http://Iibraries.mit.edu/ask DISCLAIMER NOTICE MISSING PAGE(S) Pages 7-14 were not submitted Chapter 1 Introduction The past three decades have witnessed an intensification of pressures on families in contemporary China. As a result of wide-ranging social changes, including the state-enforced shrinking of the family size through the one-child policy and the dismantling of social and job security heralded by economic reform and liberalization, parents are directed by state, market, educational, and medical institutions alike to raise "quality" children and fewer of them (Greenhalgh and Wrincker 2005: 43), while children face the burden of being their forebears' "only hope" for old-age security, and a better life (Fong 2004). While the dramatic decline in patriarchy, the rising power of women, and marked shifts of power from senior to junior members and from parents-in-law to daughters-in-law might lead one to expect otherwise (Yan 2003, Fong 2004, To 2014), family life in China continues to be structured by the expectation of an intergenerational exchange of care across life spans. Parental sacrifices in turn, legitimize a moral demand for reciprocity on the part of children (Feuchtwang 2002), and such a moral logic is reinforced in schools where children are taught the importance of filial piety (Kipnis 2008). What happens, however, when the cycle of reciprocity between parents and children is disrupted? Pulitzer Prize winning journalist Mei Fong shows with painstaking clarity in her 2015 book One Child some of the consequences for parents brought about by the unexpected and early demise of children. She observes how parents whose only children have died in the Sichuan earthquake of 2008 were ostracized by their neighbors who feared bereft parents would seek social and economic support from their neighbors and community. Known as shidu (meaning 15 those who have sustained the loss of an only child), these parents become social pariahs. Without guarantors, they have difficulties even getting a place in nursing homes or burial plots. Besides death, rifts and estrangements in parent-child relationships also disrupt the reciprocity that govern parent-child relationship (Ikels 1990; Zhang and Goza 2006). The past four decades, however, have witnessed the making of another novel and complicated moral conundrum for families in post-socialist China-the growing albeit highly uneven recognition of developmental disorders such as autism in children. Unlike sudden and unexpected death or rifts in relationships, developmental disorders force parents to confront early on, in practical, moral, and affective ways, the reality that there might never be any reciprocity. Furthermore, most parents of autistic children come to this realization alone, unsupported by their family and immediate community who remain ignorant about autism. Autism leaves few traces on the physical body, making it difficult for the lay person to identify. Identified by psychiatric and child development specialists as a developmental disorder that manifests itself through deficiencies in social communication, difficulties in reading nuances in social contexts, repetitive behaviors, and other global developmental delays, autism spectrum disorder renders it impossible for individuals to adhere to fundamental rules that govern sociality in contemporary China. Autism more often than not severely disrupts one's vital capacities to engage guanxi, the art of reciprocal social exchanges that determine one's social and economic success in life in China