'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.
Charli Babb, Janina Brede, Catherine R G Jones and 6 others
PMID 33588579WHAT IT FOUND
Autistic women with anorexia described standard eating disorder treatments as mismatched to their needs.
Cognitive behavioural therapy failed because it assumed abstract skills they lacked, while group therapy caused shutdown due to social demands. Practical occupational therapy and emotion-focused dialectical behaviour therapy were valued more highly.
Key findings
01Participants reported that autistic traits were frequently misinterpreted by staff as eating disorder behaviours, such as sensory seeking being labelled as calorie burning or communication difficulties as resistance.
02Standard Cognitive Behavioural Therapy was described as inaccessible by most participants because it required foundational skills in abstract thinking and generalisation that they did not have.
03Therapies focusing on practical skills and emotion regulation, specifically Occupational Therapy and Dialectical Behaviour Therapy, were perceived as more beneficial than those focusing on body image or weight.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study relied on self-reported diagnoses and an online screening tool (AQ-10) which showed low internal consistency in this sample, potentially affecting the validity of the autism grouping. Recruitment was via social media and autism networks, which may have excluded those without these connections or those with lower intelligence, as no IQ was measured and participants generally had high education levels. There is a potential volunteer bias where individuals dissatisfied with their care may have been more motivated to participate. The sample size is small and qualitative, so findings describe experiences rather than measuring treatment outcomes or efficacy.
Declared interests
The authors declare no conflicts of interest. The research was supported by Autistica (a charity), and the study was part of a wider collaboration involving researchers at the University of Reading and the NHS.
The easy way to misread this
Do not conclude from this study that Dialectical Behaviour Therapy or Occupational Therapy are proven effective treatments for anorexia in autistic women. These are self-reported preferences and experiences from a small sample of 15 women; the study did not measure clinical outcomes like weight restoration or recovery rates.