“Who I am”: understanding the self-identity process of autism in adults in the UK

PURPOSE: This study aimed to: (1) explore factors shaping the self-identification process among adults who identify as autistic; (2) examine how self-identification functions in relation to formal diagnosis, including whether it serves as a sufficient endpoint or a transitional stage; and (3) contribute to the UK adaptation of the Autism Spectrum Identity Scale (ASIS) as a complementary identity-focused measure within adult assessment 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.