International Meeting for Autism Research: Autism and the Family in India: An Ethnographic Study

Autism and the Family in India: An Ethnographic Study

Friday, May 21, 2010
Franklin Hall B Level 4 (Philadelphia Marriott Downtown)
10:00 AM
S. Vaidya , Indira Gandhi National Open University, New Delhi, India
Background: Historically, autism has been a largely unrecognized category in India; people presenting with its symptoms were routinely regarded as mentally retarded or mentally ill. The word “autism” is now increasingly familiar amongst the lay public and professionals alike. However, new avenues for diagnosis and treatment remain largely confined to the educated, urban English speaking sections of the population. The onus for obtaining access to an appropriate diagnosis and intervention is still placed squarely on the family. Parents often have to travel great distances, uproot themselves from the community and undergo great financial and social hardship.

Objectives: This paper seeks to chronicle the lived experiences of families of children with autism by tracing the processes of symptom recognition, help seeking, and obtaining an appropriate diagnosis and program for action. It attempts to unpack the manner in which families mobilize psychic, interpersonal and cultural resources in order to “make sense” of their child's condition and personhood and interpret it to the wider society.

Methods: Data were gathered in the course of an ethnographic engagement with twenty families based in Delhi, India. The author's position as the mother of a young boy with autism was an integral aspect of the research process, in tune with the reflexive and feminist methodological underpinnings of the work. The study was exploratory, with the aim of opening the area of autism and the family to ethnographic enquiry. Participant observation and extensive unstructured interviews were conducted with parents, siblings, grandparents, domestic helpers and significant others intimately involved with the child.

Results: This study sharply indicated the growing awareness amongst middle-class Indian families about “normal” development and their apprehension about perceived deviance or difference. This is in marked contrast to the more relaxed parenting styles of earlier generations. The impact of western bio-medicine and the pathologizing of difference were also noted. At the same time, cultural explanations with regard to the “divine innocence” of their children and the theory of karma played an important role in helping families come to terms with their child's condition. These apparently contradictory processes mirror the socio-cultural reality in contemporary India.

Conclusions: Autism in India is regarded as a “middle class” disorder precisely because it is only the educated middle class that can undertake the long, frustrating and expensive journey to obtain appropriate interventions for their children. This perception colors disability policy, training of personnel, and outreach. In the absence of a social security net, familial responsibility becomes even more onerous. India is a signatory to multiple international resolutions on disability rights, and has a Constitutional mandate for the protection of the marginalized. However, given the endemic structural problems of the country, actualizing these commitments is very difficult and have yet to translate into action. India's long-standing tradition of communitarian care of the old, sick and disabled needs to be revitalized and reinterpreted within a “rights” framework. The growth of caring communities involving all stakeholders will help ease the burden on the family and integrate affected individuals within meaningful and rewarding community roles.

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