"Who I am": understanding the self-identity process of autism in adults in the UK.

This study looked at how adults in the UK understand their autistic identity. Researchers spoke with 12 adults - some who self-identified as autistic without a formal diagnosis, and others who had both. They found that recognizing yourself as autistic is a complex process shaped by feeling different throughout life, hiding autistic traits, and difficulties accessing diagnosis. Some people felt self-identification was enough, while others wanted formal diagnosis for validation or support.

This qualitative study explored how 12 UK adults understand their autistic identity, comparing those with self-identification only versus those with both self-identification and formal diagnosis. Using focus groups and thematic analysis, researchers found that self-identification is a dynamic process influenced by lifelong experiences of feeling different, masking behaviours, misrecognition by others, and barriers to accessing diagnosis. Some participants viewed self-identification as sufficient, while others used it as a stepping stone toward formal diagnosis for validation or support access. The study highlights bidirectional relationships between identity development and mental health, suggesting that identity-focused conversations could enhance person-centred assessment practices.

Suggests incorporating identity-focused dialogue into autism assessments could enhance person-centred practice. Clinicians should recognize self-identification as valid regardless of formal diagnosis status. Understanding individual motivations for seeking or not seeking diagnosis may improve support planning.

Small sample size (12 participants) limits generalizability. Qualitative design cannot establish causation. UK-specific context may not apply to other countries. No comparison with non-autistic controls. Self-selected sample may introduce bias.

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. 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.

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. 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.