Background: There is an increased prevalence of anorexia nervosa (AN) in autistic women and this group has poorer treatment outcomes compared to non-autistic women with AN. However, there is little research into improving eating disorder treatment for autistic women. This study investigated how best to support autistic women with AN within eating disorder services.
Method: A three-stage Delphi study was conducted with 49 participants with relevant expertise as a researcher, clinician, or expert by experience.
Results: A total of 70 statements were generated, with 56 reaching consensus after the final round. Statements reaching consensus made recommendations for adaptations to treatment, staff training, and service organisation.
Conclusions: The results highlight the need to distinguish between autism- and AN-related difficulties, accommodate autistic traits such as sensory sensitivities and communication differences, and ensure the autistic voice is present in both the development and delivery of care. Future research should investigate the impact of these adaptations on outcomes. The applicability of these recommendations to autistic people with other eating disorders and of other genders needs to be investigated further.
Keywords: Anorexia nervosa; Autism; Delphi study; Eating disorder.
Autistic women are more likely to have anorexia nervosa (AN) than non-autistic women. Autistic women can find eating disorder treatment unhelpful and need adaptations to treatment. This study asked a group of 49 researchers, staff, and people with personal experience of autism and eating disorders what they thought would help autistic women with AN. The study used a Delphi study method, which allows the calculation of how much participants agree without them needing to meet and make a decision. The study created 56 suggestions that the participants agreed on. The results give suggestions for changing treatment, training staff, and changing how services work to be better for autistic women. The suggestions highlight the importance of being able to tell the difference between autism- and AN- related behaviour, adjusting care to accommodate autistic traits, and involving autistic people in the development of care. Many of the suggestions recommend that changes are flexible to the individual autistic person. In the future, research should check if these changes are helpful for autistic women with AN, and if they would be helpful for autistic people who are not female or have other eating disorders.
© 2023. The Author(s).