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Published, Version of Record (VoR)CC BY-NC V4.0, Open
Journal article
Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology
BMJ open, v 10(5), 037968
30 May 2020
PMID: 32474432
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Introduction
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.
Methods and analysis
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.
Ethics and dissemination
The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.
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Details
- Title
- Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology
- Creators
- Elizabeth Pellicano - Macquarie UniversityWenn Lawson - Macquarie UniversityGabrielle Hall - Autism CRCJoanne Mahony - Macquarie UniversityRozanna Lilley - Macquarie UniversityCatherine Davis - Drexel University, Dana and David Dornsife School of Public HealthSamuel Arnold - Autism CRCJulian Trollor - Autism CRCMichael Yudell - Drexel University, Dana and David Dornsife School of Public Health
- Publication Details
- BMJ open, v 10(5), 037968
- Publisher
- Bmj Publishing Group
- Number of pages
- 7
- Grant note
- 0.13RS / Cooperative Research Centre for Living with Autism (Autism CRC) under the Australian Government's Cooperative Research Centres Program; Australian Government; Department of Industry, Innovation and Science; Cooperative Research Centres (CRC) Programme
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- Dana and David Dornsife School of Public Health; Center for Science, Technology, and Society
- Web of Science ID
- WOS:000561432600011
- Scopus ID
- 2-s2.0-85085675788
- Other Identifier
- 991021860766404721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Psychology, Developmental