‘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
Standard eating-disorder programs are failing autistic women because the programs ignore autism-specific needs.
01Research in Context
What this study did
The team talked to 23 autistic women, 11 parents, and 15 eating-disorder clinicians across the UK.
They used long interviews to learn why current eating-disorder care feels broken for autistic clients.
The study did not test a new treatment; it mapped the pain points from three points of view.
What they found
Clinics treat anorexia the same way for everyone. Autistic women said this one-size plan ignores sensory issues and need for clear rules.
Staff admitted they had little autism training. Parents watched their daughters get worse or drop out.
The core message: it is not refusal to get help; it is that the help is not built for autism.
How this fits with other research
Simpson et al. (2019) ran an inpatient program and saw that autistic traits stayed flat during care. Babb et al. (2021) now show why: the program never changed to fit autism.
Burkett et al. (2022) looked at feeding struggles in preschoolers and found moms under huge stress. Babb shifts the lens to adult women and shows the stress continues if services stay rigid.
ALee et al. (2022) proved that simple positive reinforcement can cut food selectivity in autistic kids. Babb’s data say adult clinics should borrow these autism-wise tactics.
McClannahan et al. (1990) warned that group homes were built for ID, not autism. Thirty-one years later, Babb finds the same design flaw in eating-disorder wards.
Why it matters
If you treat eating disorders, add autism questions to intake. Offer written rules, sensory breaks, and shorter sessions. These small tweaks can keep autistic clients in care and improve outcomes.
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02At a glance
03Original 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. 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.
Autism, 2021 · doi:10.1177/1362361321991257