Abstract

This dissertation reports on the results of a qualitative investigation of the experiences of mothers whose children with autism spectrum disorder were experiencing transitions into and out of adolescence. A Constructivist Grounded Theory methodology was implemented in this study. Semi-structured interviews were conducted with 78 mothers who had children between the ages of 12 and 22. Mothers’ experiences were influenced by several factors, arranged in four core categories: parent stressors (67%), services (4%), professionals (24%), and parent solutions (5%). The constructivist grounded theory process culminated with the Parents’ Perceptions Theory (PPT) emerging from the data. The PPT theory explains that maternal stress is elevated when services or clinical practices are perceived to be unhelpful. Specifically, when services or practices were perceived as not addressing the needs of the parents or child from the mothers’ perspectives, mothers reported higher stress. The PPT provides a new account grounded in mothers’ own experiences for the observation that mothers’ who actively receive services still report significant stress.
In Study 2, the author sought to explore whether the PPT would also be evident in the daily accounts of parenting stress in parents of younger children with ASD (ages 3-11). Semi-structured interviews about daily parenting stress conducted with 20 parents (18 mothers; 2 fathers) were analyzed for the presence of the coding scheme and the PPT that emerged from Study 1. Three of the core categories were present in the data: Parent stressors (88%), services (2%), and professionals (10%). The Parents’ Perceptions Theory was also reflected. Parents’ perceptions of the usefulness of services or clinical practices were found to influence their reported stress.
The application of Constructivist Grounded Theory across two samples of parents of children with autism spectrum disorder provided important insight into how the disconnect between parents’ perceptions of whether services are meeting their caregiving needs and the receipt of services contributes to parenting stress. The PPT suggests that delivery of services should be informed by regular assessment of parental perceptions of whether their needs are being met in order to provide better support to these families throughout the child’s lifespan.