Documenting the untold histories of late-diagnosed autistic adults

a qualitative study protocol using oral history methodology

Elizabeth Pellicano, Wenn Lawson, Gabrielle Hall, Joanne Mahony, Rozanna Lilley, Catherine Davis, Samuel Arnold, Julian Trollor, Michael Yudell

    Research output: Contribution to journalArticle

    1 Citation (Scopus)
    15 Downloads (Pure)

    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.

    Original languageEnglish
    Article numbere037968
    Pages (from-to)1-7
    Number of pages7
    JournalBMJ Open
    Volume10
    Issue number5
    DOIs
    Publication statusPublished - May 2020

    Bibliographical note

    Copyright the Author(s) 2020. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

    Keywords

    • adult psychiatry
    • mental health
    • qualitative research

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