Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion

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Ardeleanu, K., Steinberg, H., Garfield, T., Voltaire, S., Shea, L., Brown, M., Chvasta, K., & Tan, C. D. (2024). Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion. Autism, 29(9), 2344-2355. https://doi.org/10.1177/13623613241297222

Publication date: 18 Nov 2024 Added to AutiHub: 16 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
8
Autistic authors reported by the publication
Number not specified
  1. Katherine Ardeleanu
  2. Hillary Steinberg
  3. Tamara Garfield
  4. Samuelle Voltaire
  1. Lindsay Shea
  2. Maci Brown
  3. Kyle Chvasta
  4. Catherine Do Tan

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 abstract Most 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.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 17 Oct 2026 01:28.

Cited references
63
With a DOI
58
Without a DOI, from raw bibliography text
5
11 / 63 (17.5%) cited references include at least one author identified as autistic.
References with data to complete
1 / 63 (1.6%)
References with detected author names
62 / 63 (98.4%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
4
References with raw author names still to review
1
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
219
From DOI or external metadata
219
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
103 / 219 (47.0%) names are linked to an author already present in AutiHub. 116 / 219 (53.0%) names are not yet linked.
Names linked to a person identified as autistic
30 / 219 (13.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 30 / 103 (29.1%). Distinct people identified as autistic: 26 / 187 (13.9%).
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