Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research

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Kelly, C., Sharma, S., Jieman, A. T., & Ramon, S. (2022). Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research. Disability & Society, 39(3), 663-695. https://doi.org/10.1080/09687599.2022.2076582

Publication date: 20 May 2022 Added to AutiHub: 7 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Caroline Kelly *
  2. Shivani Sharma
  3. Anna-Theresa Jieman
  4. Shulamit Ramon

Abstract

Few qualitative studies have explored the lives of autistic women diagnosed in adulthood, despite this knowledge being essential to inform awareness of the intersection of autism and gender. This systematic review was undertaken to synthesise available qualitative evidence on the lived experience of autistic women diagnosed in adulthood. The accounts of 50 women from nine qualitative studies were synthesised using thematic analysis and four super-ordinate themes were identified: wanting to ‘fit in’; making sense of past experiences; developing a new ‘autistic identity’; and barriers to support. The autistic women spent many years without a diagnosis or autism-specific support, felt misunderstood, and experienced social exclusion. Following their diagnosis, they reframed these experiences into new ‘sense-making narratives’, used social media to contact other autistic people, and developed neurodiverse-affirming autistic identities. The studies suggested that health and social care professionals were not always able to recognise, refer, diagnose, and support autistic women effectively. Points of interestIn childhood, the autistic women who participated in the nine reviewed studies remembered feeling that they were ‘weird’ or ‘alien’ and being bullied due to their difficulties with socialisingThese participants imitated their more ‘easy-going’ friends in social situations to keep up appearances and look as if they were in controlAfter their diagnosis, the autistic women felt more able to be themselves, rather than trying to be the ‘ideal’ person that others expected them to beThe women who participated in the studies believed that, if they had been diagnosed in childhood, they would have coped better with dangerous situations they had encountered during their livesMost of the women in the studies felt proud of their autistic identity and the success they had achieved, despite the number of challenges they had faced

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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
191
With a DOI
142
Without a DOI, from raw bibliography text
45
32 / 191 (16.8%) cited references include at least one author identified as autistic.
References with data to complete
6 / 191 (3.1%)
References with detected author names
185 / 191 (96.9%)
Without detected author names
6
Without a structured title
4
Without a stable identifier
37
References with raw author names still to review
2
References with external metadata lookup issues
2
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
383
From DOI or external metadata
383
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
136 / 383 (35.5%) names are linked to an author already present in AutiHub. 247 / 383 (64.5%) names are not yet linked.
Names linked to a person identified as autistic
49 / 383 (12.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 49 / 136 (36.0%). Distinct people identified as autistic: 34 / 336 (10.1%).
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