Childhood Autism Diagnosis and the New Responsibilities of Motherhood

• In Event: 480 - Section on Medical Sociology Refereed Roundtable Session and Business Meeting
  In Refereed Roundtable 60min: Table 04. Autism

Abstract

The experience of autism diagnosis has been called an odyssey, often taking months or years and requiring the coordination of multiple developmental assessments and forms of expertise. For childhood diagnoses, this process can involve extensive work on the part of parents or primary caregivers. Despite growing scholarship on the sociology of diagnosis, family experiences of autism, and emphasis on early detection and intervention, little attention has been paid to the process and consequences of childhood autism diagnosis for caregivers. This paper draws on 30 in-depth interviews with mothers of children diagnosed with autism to explore how their experiences of the diagnostic odyssey influenced their understandings of autism and expectations of motherhood. Based on a grounded theory analysis of women’s accounts of their children’s diagnosis, I argue that autism diagnosis becomes a turning point in many women’s lives, shaping their sense of responsibility as mothers and their awareness of the structural conditions that affect autistic individuals. My analysis shows that the process of autism diagnosis often begins before any clinical encounter takes place and has consequences for individuals and their families long afterward. These consequences often position mothers as uniquely qualified advocates for their children, impacting their experiences of parenthood and shaping their sense of responsibility for their children. These findings draw on and contribute to literature in medical sociology on diagnosis, mothering, and childhood disability by providing new perspectives on medicalization and the impacts of childhood diagnosis on caregivers.

Author

• Martine Danielle Lappe, Columbia University