Documenting the untold histories of late-diagnosed autistic adults: A study protocol using oral history methodology

Published May 2020
Abstract
Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to ( 1 ) understand better the consequences of living without a diagnosis, ( 2 ) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and ( 3 ) identify the perceived impact of receiving that diagnosis. Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults’ experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will ( 1 ) have been born before 1975, ( 2 ) have received a clinical, autism diagnosis after the age of 35, ( 3 ) be English-speaking and ( 4 ) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis.
Citation
Pellicano, E., Lawson, W., Hall, G., Mahony, J., Lilley, R., Davies, C., Arnold, S.R.C., Trollor, J.N. & Yudell, M. (2020) Documenting the untold histories of late-diagnosed autistic adults: A study protocol using oral history methodology. BMJ Open, 10:e037968. doi: 10.1136/bmjopen-2020-037968

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