“I want to have a path”: an exploratory study of parent experience of early autism diagnosis in Massachusetts and Central Scotland

Abstract

Parents of children with autism have been identified across research as having unique experiences in comparison to parents of children with other disabilities. The focus to date has been on identifying factors impacting on parental well-being post-diagnosis, with some more recent studies looking more specifically at parent experience of the diagnostic process. However, there is less literature that explores the impact that this diagnosis may have on parental perspectives of, and aspirations for, their child. In addition, within this current research, little is known about how parents of toddlers make meaning of their situation pre and post-diagnosis, with limited literature so far that looks at the influence that geographical location may have on this. As an exploratory, qualitative study of parent experience of early autism diagnosis in Massachusetts and central Scotland, this thesis aimed to bridge this gap by investigating parents’ experience in these early years, in two similar, yet contrasting settings with significant differences in policy and practice. Utilising Blumer’s (1969) principles of symbolic interactionism, this thesis examined the factors that had an effect on participants’ meaning making, drawing on extended premises of SI (Snow, 2001; Stryker, 2008) to explore the extent to which structural and social influences in each country may have impacted on this. It looked at the similarities and differences between parents’ experiences of: the autism diagnostic process; access to, and engagement with, post-diagnosis services; changes in perceptions of autism over time; and whether perspectives of, and aspirations for, their child altered since diagnosis. All 18 participants (14 mothers and 4 fathers) had a child (13 boys and 5 girls) under 5 years old with a diagnosis of autism. Data were generated through semi-structured interviews, using open coding to group initial categories, before moving into interpretive, inductive analysis to identify wider themes. Findings highlighted key differences between policy and practice, which influenced parent experience in a number of ways. In particular, the differences between the services and support available to young children with autism and their families in each location appeared to have a significant impact on participants. However, this study also concluded that, in spite of differences in policy and practice, there were also a number of similarities in the ways in which parents made meaning and sense of their child’s diagnosis. Interaction with other parents (both face to face and online) had a strong influence on this, alongside parents’ exposure to media portrayals of autism, which were similar in both locations. Conversely, in spite of their experiences with a wide range of professionals, these interactions had a more limited effect overall on the perspectives that parents developed of their child. In addition, in spite of recognising previously held beliefs regarding stigma and stereotype in autism, all parents in this study actively rejected these perceptions after receiving a diagnosis for their child. Overall, data reflected a shared understanding of autism that crossed geographical and structural boundaries, with parents from both countries experiencing the same hopes, aspirations and fears for their child’s future. These findings may have implications for policy considerations and for services in both locations delivering pre and post-diagnostic support, with potential for more positive outcomes overall for those receiving an early diagnosis for their child.