Narratives on the Autism Journey: “Doing Family” and Redefining the Caregiver Self

Abstract

Drawing on 50 in-depth semistructured interviews with primary caregivers of at least one child diagnosed with autism, this study demonstrates how the current social experience of caring for a child with an ambiguous and invisible disorder upsets the identities of primary caregivers and challenges their ability to perform the traditional Standard North American Family ideal and normative ways of “doing family.” Accordingly, I employ a narrative framework to (a) understand deeply how everyday autism care work affects family life, caregivers’ identities, and feelings of family marginalization and (b) investigate how symbolic resources, like support groups, can provide a space to reorient and transform ideas and practices of family and caregiver identity. Through their intensified care work and psychosocial experiences on the autism journey, caregivers demonstrate how they understand, negotiate, and redefine identities and dominant ideas of family in complex and fluid ways.