Parenting Work and Autism Trajectories of Care

This study investigates the work and care associated with raising a child with disabilities in the United States. Based on in-depth interviews with parents who have a child with autism, it develops the notion of parenting work and trajectories of care to investigate how parents navigate and coordinate the challenges of getting an autism diagnosis, obtaining educational services, and re-contextualizing the possibilities for the future. I argue that parents embody a complex mix of love, hope, and responsibility in parenting work and trajectories of care that expands temporal and social elements of illness work and illness trajectories initially developed by Anselm Strauss and colleagues. This type of parenting work changes over time and is influenced by social structural forces and relationships in which the care takes place. The re-articulation of these analytic tools also begins to untangle the intricate mix of both medical and social models of disability that parents embrace and continuously negotiate. This study demonstrates how parents accept the medical model of disability by seeking and pushing for a clinical autism diagnosis and subsequent treatments, while at the same time challenge the limits placed on their children by providing them opportunities, possible futures, and a sense of personhood.

• Jennifer Singh

• School of History and Sociology