“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

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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

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