A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis

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Friedman, A., Paltoglou, A., & Sorte, R. (2024). A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis. Neurodiversity, 2. https://doi.org/10.1177/27546330241307828

Publication date: 1 Jan 2024 Added to AutiHub: 18 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Alina Friedman *
  2. Aspasia Paltoglou
  3. Rossella Sorte

Abstract

A growing number of adults are choosing to self-identify as autistic without obtaining a formal diagnosis; yet, research into this population remains scarce. Women and gender non-conforming autistics are particularly underresearched, with women facing additional barriers to diagnosis. This study examined the lived experiences of self-diagnosed autistic women and gender-diverse adults and explored how autistic identity is constructed outside of formal diagnosis in this population. Participants (n = 6) between the ages of 18 and 69 took part in semi-structured one-to-one online interviews with an autistic researcher to discuss their experiences of being self-diagnosed. Interview transcripts were analysed using interpretive phenomenological analysis. Three superordinate themes were found: (1) autistic self-discovery, (2) living without a diagnosis and (3) self-doubt and self-diagnosis. The findings suggest that many of the experiences of self-diagnosed autistic women and gender-diverse adults are similar to those who are diagnosed but with unique challenges and benefits. This study offers a new perspective on self-diagnosis as an empowering way of attaining a positive autistic identity outside of the deficit paradigm embedded within the diagnostic pathway. Lay Abstract As awareness of neurodiversity continues to grow, more adults are seeking autism assessments. This rise in demand is placing pressures on diagnostic services resulting in long waiting lists and high private costs. Many autistic adults are choosing to self-diagnose as an alternative to a lengthy and expensive diagnostic process which pathologizes their experiences. Research into this population remains very scarce, and little is known about how and why autistic adults choose to self-diagnose. Autistic women are especially underdiagnosed and underresearched, with gender-diverse autistics rarely included. This study explored how autistic women and gender-diverse adults acquire and shape their autistic identity outside of formal diagnosis and what effect this has had on their lives. An autistic researcher recruited six self-diagnosed autistic adults through social media and conducted online one-to-one video interviews with them. Three main themes were found: (1) autistic self-discovery, (2) living without a diagnosis, and (3) self-doubt and self-diagnosis. The findings offer new insights into the lives of self-diagnosed autistic women and gender-diverse adults and how their experiences are often similar to those who are diagnosed but with unique challenges and benefits. This study offers a new perspective on self-diagnosis as an empowering way of gaining a positive autistic identity outside of the diagnostic model which views autism as a disorder rather than a difference. This may help self-diagnosed autistics feel more able to disclose their identity to others, access more support and experience less invalidation, stigma and self-doubt.

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: 19 Sep 2026 07:57.

Cited references
65
With a DOI
63
Without a DOI, from raw bibliography text
2
19 / 65 (29.2%) cited references include at least one author identified as autistic.
References with data to complete
0 / 65 (0.0%)
References with detected author names
65 / 65 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
2
References with raw author names still to review
0
References with external metadata lookup issues
0
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
220
From DOI or external metadata
220
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
129 / 220 (58.6%) names are linked to an author already present in AutiHub. 91 / 220 (41.4%) names are not yet linked.
Names linked to a person identified as autistic
33 / 220 (15.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 33 / 129 (25.6%). Distinct people identified as autistic: 28 / 195 (14.4%).
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