“Who I am”: understanding the self-identity process of autism in adults in the UK
Overton, Gayle, Marsà-Sambola, Ferran, Martin, Rachael and Cavenagh, Penny (2026) “Who I am”: understanding the self-identity process of autism in adults in the UK. International Journal of Qualitative Studies on Health and Well-being, 21 (1). ISSN 1748-2631
Who I am understanding the self-identity process of autism in adults in the UK.pdf - Published Version
Available under License Creative Commons Attribution.
Download (887kB) | Preview
Abstract
Purpose
This study aimed to: (1) explore factors shaping the self-identification processamong adults who identify as autistic; (2) examine how self-identification functions inrelation to formal diagnosis, including whether it serves as a sufficient endpoint or atransitional stage; and (3) contribute to the UK adaptation of the Autism SpectrumIdentity Scale (ASIS) as a complementary identity-focused measure within adult assess-ment contexts.
Methods
Twelve UK-based adults participated in one of two online focus groups: six self-identified autistic adults without formal diagnosis and six adults who were both self-identified and formally diagnosed. Data were analysed using reflexive thematic analysis. Participants completed a cognitive review of the ASIS to inform adaptation.
Results
Self-identification emerged as a dynamic, context-dependent process shaped by lifelong experiences of difference, masking, misrecognition, and structural barriers to diagnosis. For some participants, self-identification constituted a sufficient identity position; for others, it functioned as a catalyst for pursuing formal diagnosis to access validation or support. Identity development and co-occurring mental health conditions were described as interacting in bidirectional ways.
Conclusions
Self-identification does not replace formal diagnosis but interacts with it in relational and context-sensitive ways. Incorporating identity-oriented dialogue into assessment processes may enhance person-centred practice.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | autistic identity, self-identification, diagnosis, ASIS, neurodiversity, focus groups, autism spectrum |
| Subjects: | R Medicine > R Medicine (General) |
| Divisions: | The School of Health, Sciences and Society |
| Depositing User: | David Upson-Dale |
| Date Deposited: | 19 Aug 2026 13:15 |
| Last Modified: | 19 Aug 2026 13:15 |
| URI: | https://oars.uos.ac.uk/id/eprint/5693 |
Downloads
Downloads per month over past year
Tools
Tools