ERIC Number: EJ1434695
Record Type: Journal
Publication Date: 2024-Aug
Pages: 14
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: EISSN-1461-7005
Diagnosis as a New Beginning Not an End: A Participatory Photovoice Study on Navigating an Autism Diagnosis in Adulthood
Autism: The International Journal of Research and Practice, v28 n8 p2014-2027 2024
Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people "currently" seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21-46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please' and (4) 'here's a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.
Descriptors: Autism Spectrum Disorders, Photography, Adults, Coping, Females, Experience, Social Bias, Attitudes toward Disabilities, Clinical Diagnosis, Self Concept, Foreign Countries
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United Kingdom
Grant or Contract Numbers: N/A