How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography

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Radev, S., Freeth, M., & Thompson, A. R. (2024). How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography. Autism, 28(9), 2166-2178. https://doi.org/10.1177/13623613241235531

Publication date: 11 Mar 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Sarah Radev *
  2. Megan Freeth
  3. Andrew R. Thompson

Abstract

Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults’ experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult’s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations. Lay abstract Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults’ experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult’s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
42
Total cited references integrated for this publication.
Cited references with an identified autistic author
4 / 42 (9.5%)
Cited author occurrences identified as autistic
12 / 240 (5.0%)
Among occurrences linked to AutiHub author records: 12 / 96 (12.5%). Distinct cited authors identified as autistic: 9 / 200 (4.5%).
Cited author occurrences linked to AutiHub author records
96 / 240 (40.0%)
Distinct linked cited authors: 65 / 200 (32.5%)
Linked cited-author occurrences not identified as autistic
84 / 96 (87.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 84 / 240 (35.0%). Distinct linked cited authors not identified as autistic: 56 / 65 (86.2%).
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