Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.
Let self-identified autistic adults—especially LGBTQ+ people—into your research and clinics without demanding paperwork; their insights are just as real and useful.
01Research in Context
What this study did
Byrne et al. (2025) talked with 65 queer and trans autistic adults. They asked why some people feel autistic yet never got a doctor’s note.
The team recorded each person’s story about identity, roadblocks to formal testing, and times they felt dismissed.
What they found
Many participants said, “I know I’m autistic,” even without paperwork. They felt valid in their identity but hit walls like cost, bias, and gatekeeping.
The adults wanted services and research to open the door to anyone who self-identifies, not just the officially labeled.
How this fits with other research
Lineberry et al. (2023) and Diemer et al. (2022) showed the same walls: pricey tests, tools built for boys, and doctors who shrug. Katherine’s team widens the lens to queer and trans people and offers a bolder fix—skip the gate altogether.
Bransgrove et al. (2025) studied late-diagnosed adults who finally got the stamp. Their stories match the new paper’s themes: identity grows through peer chat, media, and safe spaces. Together the studies say support matters more than the label source.
Michiels et al. (2026) zoom in on gender identity journeys of 15 autistic adults. Their work extends Katherine’s by showing that autism and gender weave together; both teams argue services must welcome the whole person, not the paper.
Why it matters
If you run groups or intake, ask only, “Do you identify as autistic?” and move on. Drop the proof-of-diagnosis rule. You’ll reach queer and trans clients who’ve been turned away elsewhere, and you’ll still get rich, usable data for research.
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02At a glance
03Original abstract
Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstractMost autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.
Autism : the international journal of research and practice, 2025 · doi:10.1177/13623613241297222