A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK

Abstract

Objective: Qualitative studies report that autistic women have poor experiences when being treated for an eating disorder (ED) and express that ED services are not appropriately tailored to meet their needs. It is unclear whether their experience differs to other women accessing ED services. The aim of the current study was to compare autistic and non-autistic women's ED illness history and experiences in ED services. Method: An online survey about ED illness history and their experience with ED treatment was completed by 46 autistic women with a restrictive ED and 110 non-autistic women with a restrictive ED.Results: Despite some similarities, there were three key differences in the experiences reported by autistic and non-autistic women. First, autistic women reported a longer duration of ED and being diagnosed with an ED at a younger age than non-autistic women. Second, autistic women reported accessing a broader range of healthcare settings and ED treatments than nonautistic women when being treated for an ED. Finally, autistic women rated their experiences of inpatient care, dietetic input, and cognitive behavioural therapy (CBT) as significantly less beneficial than non-autistic women when being treated for an ED. Conclusion: These findings increase understanding of autistic women's ED experience and can help to shape ED services and treatments to better accommodate the needs of their autistic clients.

More than an outcome: a person-centered, ecological framework for eating disorder recovery

“…Even when practitioners were aware of an autism diagnosis, participants felt that autism was not taken into consideration and that they were perceived as ‘too complex’ for services [ 76 ]. Autistic individuals are referred to and access a broader range of ED treatment settings compared to their non-autistic peers [ 78 ], suggesting that these settings do not know how to manage co-occurring EDs and autism.…”

“…Cognitive behaviour therapy for EDs (CBT-E) is a common treatment approach for adults with EDs [ 79 ]. Autistic individuals reported that CBT was not helpful for them because it presumed pre-existing skills that these individuals did not have [ 76 , 78 ]. For example, one autistic woman described that she was not able to generalize the skills that she had learned because she did not know that this was the goal of treatment [ 76 ].…”

“…Because of these factors, autistic individuals with EDs are disadvantaged when it comes to support for their ED. Although these individuals report being diagnosed at an earlier age, there are few effective treatments for this group and they are often referred from service to service [ 78 ]. Expectations of ‘typical’ thinking patterns and social communication may make it hard for individuals to engage with existing programs [ 76 ], while inaccurate assumptions about the function and maintenance of ED symptoms often leave individuals feeling misunderstood and unheard [ 75 ].…”

“Work WITH us”: a Delphi study about improving eating disorder treatment for autistic women with anorexia nervosa

“…People with AN and higher levels of autistic traits also had longer illness durations [ 10 ]. Autistic women with AN reported accessing a broader range of ED treatments than non-autistic women, suggesting they have difficulty accessing treatments that work [ 11 ]. Autistic women also rated various aspects of ED treatment as less beneficial than non-autistic women [ 11 ].…”

“…Autistic women with AN reported accessing a broader range of ED treatments than non-autistic women, suggesting they have difficulty accessing treatments that work [ 11 ]. Autistic women also rated various aspects of ED treatment as less beneficial than non-autistic women [ 11 ]. When followed up over a 30 year period, autistic adolescents with AN had worse outcomes than non-autistic adolescents in terms of mental state, independence from their families, social contact, and employment [ 12 ].…”