In one sentence
In a small UK study, adults described recognising themselves as autistic as a slow, personal process — sometimes enough on its own, sometimes a step toward a formal diagnosis — shaped by masking, being misunderstood, and barriers to assessment.
What the researchers did
Researchers ran two online focus groups with 12 UK adults. Six had identified as autistic without a formal diagnosis; six had both self-identified and received a formal diagnosis. The groups talked about what shaped that recognition, how it sat next to formal diagnosis, and whether self-identification felt like an endpoint or a stage. Participants also reviewed the Autism Spectrum Identity Scale, a questionnaire about autistic identity, to help adapt it for UK adult assessment. The team used reflexive thematic analysis: they read the transcripts closely and grouped repeating themes. This is qualitative work — it maps meaning, not prevalence.
What they found
- Self-identification was not a single moment. People described a moving, context-dependent process, fed by a lifetime of feeling different, masking (hiding autistic traits to fit in), being misread, and hitting practical walls on the way to a formal diagnosis.
- For some, self-identification was enough: they knew who they were and did not need an official label. For others it was a catalyst — it pushed them to seek a diagnosis for validation, support, or recognition of needs.
- Identity and mental health ran both ways. Anxiety or depression could make it harder to explore who they were; coming to see themselves as autistic sometimes eased distress and sometimes brought up hard feelings.
- The authors conclude that self-identification does not replace formal diagnosis. The two interact, depending on the person and the setting.
What this means for families and therapists
If a teenager or adult says they are autistic without a clinic letter, that statement can still be a real part of how they understand themselves. Open questions help: what does that word mean to them, what would a formal assessment change, and what do they want from you right now. Clinicians can add identity-focused conversation to assessment — masking, misrecognition, and what a diagnosis would unlock — without treating self-identification as either “not real” or as a substitute for clinical work. Do not push someone toward or away from diagnosis; ask what they need. Waiting lists and cost are part of the story this group told, so “just get assessed” is not always an available next step.
Limitations and what we don't know yet
Twelve people, all in the UK, who chose to join a study about identity, cannot stand in for every autistic adult. Memory and mood colour personal accounts. The questionnaire review was early feedback, not a full validation. The study cannot say how common these paths are, how they change over years, or how they look outside the UK. Larger and longer work is needed.
This is a plain-language summary of "Who I am": understanding the self-identity process of autism in adults in the UK by Overton GL, Marsà-Sambola F, Martin R et al., International journal of qualitative studies on health and well-being (2026). Source license: CC-BY. It is not medical advice — talk to a qualified clinician before changing therapy.