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Children and Families Research Centre

Dr Rozanna Lilley PhD

Dr Rozanna Lilley



Experiences of School Choice and Change for Mothers of Students Diagnosed with Autism


This dissertation investigates the experiences of 22 mothers whose children diagnosed with autism were transitioning to school in Sydney, Australia. Qualitative interviews were conducted over three years (2009-2011) focusing on maternal experiences of school choice and change in the early years of formal education. Thematic narrative analysis of the interview transcripts (62 in total) is used to explore ongoing societal processes of stigmatisation and exclusion that shapes the lives of these families. A focus on maternal identity and gendered moralities underpins the analysis. Overall the six publications that comprise the core of this dissertation point to the constraints and dilemmas surrounding primary school placement and an ongoing drift towards segregated classrooms, especially for students diagnosed with both autism and an intellectual disability. The systemic failures to meet the promise of policies of school inclusion are demonstrated at the level of everyday practices by school gatekeepers, educators and bureaucrats. A variety of maternal tactics are deployed to manoeuvre and negotiate within an education field largely defined by professional and institutional strategies.

The dissertation is interdisciplinary, drawing on sociology, anthropology and critical disability studies. Theoretically the argument moves in two directions. Firstly, Goffman's conceptualisation of 'courtesy' stigma is reframed to more specifically account for the felt experiences of mothers. Secondly, maternal engagement with various forms of knowledge, both expert (professional guidance) and lay (rumour), is highlighted. Stigma and knowledge negotiation are intertwined in ongoing projects of school choice and school change which, in turn, shape and challenge identity at particular moments of maternal and student careers. School change narratives are used to invert the usual emphasis on the deficits of students diagnosed with autism focusing, instead, on maternal perceptions of the disabling practices of educators. The dissertation concludes with a case for conceptualising these widespread practices as Autism Inclusion Disorder.