Square pegs in round holes: The mainstream schooling experiences of students with an Autism Spectrum Disorder and their parents

Abstract

There has been an international movement towards inclusion and consequently an increasing number of children with Autism Spectrum Disorders (ASDs) attend mainstream schools. In recent years there has been a growth in cross-sectional research that seeks to understand the experiences of students with ASD in mainstream schools. This research indicates that students often experience bullying, a lack of understanding from teachers and peers and frequent suspensions and exclusions. To date there has been little research to explore the participation of students with ASD in mainstream school over time. There is a need to understand participation in mainstream school as a process over time that changes in response to the complex interplay of the individual and their environment. This will inform the development of strategies to better facilitate their participation across primary and secondary school. This thesis aims to develop an understanding of participation in mainstream school over time from the perspective of students with ASD and their parents. The study uses a qualitative methodology and is underpinned by Life Course Theory, which recognises the dynamic interaction of individual and contextual factors and processes on life experiences. To investigate perspectives and experiences of participation in mainstream school semi-structured interviews were conducted with eight students with ASD aged 12-15 years and 11 parents. Parents were interviewed on two occasions and students were interviewed once, generating a total of 26 interviews. Retrospective interviews with parents were conducted to elicit their perspectives about their children’s educational participation across primary and secondary school and their experiences of supporting their children’s participation over time. Student interviews captured a snapshot of their perspectives on their current participation in mainstream schools. Thematic analysis of the interview data was undertaken and concepts from Life Course Theory were applied to the data to enable a deeper understanding of the themes of participation in mainstream school across the schooling years. The findings of the study indicate that the majority of parents perceived that their children had restricted participation in mainstream schools and their educational trajectories were characterised by disruption. A minority had relatively stable academic participation trajectories, but still had difficulties with social participation. Furthermore, students experienced academic mismatch and standing out in mainstream schools. Parents universally experienced a perpetual battle to support their children’s participation in mainstream schools over time. Parents and students actively tried to influence their participation but most perceived they had little control over their participation in mainstream schools. This indicated that the school environment had a significant and constraining 2 influence on their participation. This thesis makes a contribution to knowledge about the participation of students with ASD in mainstream school by incorporating the perspective of students with ASD and their parents and more so, by considering participation across schooling years as a whole. It also makes a contribution to methodological knowledge about doing inclusive research with young people with ASD. A number of policy and practice recommendations are made, including the need for mainstream schools to accept greater responsibility for accommodating each individual student with ASD, and to encourage more meaningful involvement of parents and students in educational planning in order to improve their participation.