Abstract/Summary

There is evidence that a growing number of autistic adolescent girls stop attending mainstream secondary schools in England, but little is known about why this is happening or what needs to change. This research used a mixed methods approach to understand and explain this phenomenon, and to make recommendations for change. The historical underdiagnosis of girls has meant their stories have been absent from research into autism and into the ways in which they are excluded from education. This study therefore positioned the voices of these absent girls as key to understanding their lack of access to education and engaged them as participants and co-collaborators in knowledge production. Lived experiences and personal constructs of school were explored over three sessions of semi-structured interviews with 10 adolescent autistic females. The girls generated timelines to chart pathways to absence, identifying both positive and negative events in their histories, and these guided discussions and analysis. Of the eight girls who completed all three interviews, all self-identified as cognitively able. Scale and context were provided by an analysis of secondary data retrieved from the Department for Education (DfE) and National Health Service (NHS). DfE data (2009-2017) established that the number of autistic female pupils at mainstream schools in England is increasing, and that adolescent autistic girls were more likely than autistic boys or non-autistic boys or girls to be persistent absentees. Data (n=4448) from one NHS Trust in the SE of England (2012-2018) showed that the mean age of referral for girls was decreasing, but that boys were still referred and diagnosed younger, and that there were wide discrepancies in rates of referral between different regions. A more detailed analysis of data from 2016 (n=408) found that schools were less likely to refer girls for an assessment of autism than other main types of referrer. Case studies of the NHS records of eight autistic girls revealed that the girls’ voices were absent in documentation about them until the point of assessment, as well as from decisions about their needs in school. My original contribution to knowledge is that, in contrast to much of the literature on school non-attendance, the autistic girls in this study wanted to be in a school, learning. Disengagement was a gradual process for most, and this research shows the multiple, often subtle ways in which autistic girls can be excluded from mainstream education, sometimes unnoticed, with health and social consequences. The girls were not rejecting education, but an ethos and an environment that were profoundly damaging to their mental health. The lack of support and understanding they experienced were partly the result of their voice being undermined or overlooked, contrary to UK legislation and the United Nations Convention on the Rights of the Child (UNCRC). Key recommendations were to prioritise wellbeing, provide autistic-led training for all staff, become more curious about why some autistic pupils take the actions they do and take action to protect and support them. Alternative provision that meets academic needs in a smaller nurturing environment must be made available for those autistic Children and Young People (CYP) for whom mainstream will not adapt to care for. Underpinning all these recommendations is the need to truly listen to the voice of the autistic Young People (YP). This is a rights issue.