‘It’s not that they don’t want to access the support... it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals

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Babb, C., Brede, J., Jones, C. R. G., Elliott, M., Zanker, C., Tchanturia, K., Serpell, L., Mandy, W., & Fox, J. R. E. (2021). ‘It’s not that they don’t want to access the support... it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals. Autism, 25(5), 1409-1421. https://doi.org/10.1177/1362361321991257

Publication date: 15 Feb 2021 Added to AutiHub: 4 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Charli Babb
  2. Janina Brede
  3. Catherine R G Jones
  4. Mair Elliott *
  5. Cathy Zanker
  1. Kate Tchanturia
  2. Lucy Serpell
  3. William Mandy
  4. John R. E. Fox

Abstract

This study explores autistic women’s experiences of eating disorder services. Estimates suggest that 20%–30% of women in treatment for anorexia nervosa display diagnostic features characteristic of autism. Research suggests that autistic individuals’ needs are not being met by standard anorexia nervosa treatments. In the current study, in-depth interviews were conducted with 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 eating disorder healthcare professionals. Using thematic analysis, three overarching themes were identified: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that there were diverse barriers facing autistic women when in treatment for anorexia nervosa, and these were accentuated by a lack of autism understanding within eating disorder services. Future research should focus on developing interventions that are tailored to the specific needs of autistic individuals with anorexia nervosa. Lay Abstract This study explores autistic women’s experiences of eating disorder services. About 20%–30% of people with anorexia nervosa are also autistic, and current treatments seem not to work as well for them. We interviewed 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 healthcare professionals working in eating disorder services. We asked autistic women and parents about their experiences of eating disorder services, and we asked healthcare professionals about their experiences treating autistic women with anorexia nervosa. Participants’ views were represented by three overall themes: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that autistic women face many barriers when in treatment for anorexia nervosa, often because of a lack of autism understanding within eating disorder services. Future research should look at developing anorexia nervosa treatments that can specifically help autistic individuals.

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: 23 Oct 2026 07:59.

Cited references
57
With a DOI
51
Without a DOI, from raw bibliography text
6
4 / 57 (7.0%) cited references include at least one author identified as autistic.
References with data to complete
3 / 57 (5.3%)
References with detected author names
55 / 57 (96.5%)
Without detected author names
2
Without a structured title
3
Without a stable identifier
5
References with raw author names still to review
2
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
243
From DOI or external metadata
243
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
91 / 243 (37.4%) names are linked to an author already present in AutiHub. 152 / 243 (62.6%) names are not yet linked.
Names linked to a person identified as autistic
9 / 243 (3.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 9 / 91 (9.9%). Distinct people identified as autistic: 9 / 205 (4.4%).
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