Caring in context: Parenting a child with an Autism Spectrum Disorder in India
The present study investigated the experience of parenting a child with an Autism Spectrum Disorder (ASD) in Goa, India. The construct ASD originated in the West but is now utilized throughout the world. Previous research from India suggested that parents may have different conceptions of autism/ASD than Western or mainstream professionals. The research also suggested that local understandings influence the way parents care for their child, interpret differences, and seek help. However, the extant literature lacked a comprehensive, psychological description of caring for a child with ASD. The present study adopted a phenomenological approach in order to elucidate the meanings of childcare from parents' viewpoints. Participants came from 12 families of children already diagnosed with ASD. Existing interviews of ten parents from a first round of data collection were utilized, and follow-up interviews of seven sets of parents were conducted. In addition, three new sets of parents were interviewed, one being an uncle and aunt of a child from the initial data collection. Data were analyzed via phenomenological psychological methods. The findings revealed the presence of a four-part temporal structure. Each temporal phase was constituted by parents' experience of: meanings of the child, practices with the child, and social relations in their childcare. In Phase 1, parents perceived the child as having an open future and welcomed the child into the home world with a nurturing relationship. In Phase 2, parents perceived unexpected social disruptions of the child within familiar settings and sought advice when the situation was unmanageable. In Phase 3, parents saw the child as violating norms in pivotal communities like schools, which restricted the child's participation in these developmentally critical settings. Parents conducted social comparisons and discovered that their child differed from the "normal" peer group. Parents then sought remedial help from childcare experts. In the fourth phase, parents began to accept the child's inabilities as permanent. In an advanced part of Phase 4, parents pursued alternate adult activities and attempted to make the world more welcoming for children like their own. Implications of these findings for research, policy, and practice are discussed.
Desai, Miraj U, "Caring in context: Parenting a child with an Autism Spectrum Disorder in India" (2012). ETD Collection for Fordham University. AAI3563395.