Do women with eating disorders who have social and flexibility difficulties really have autism? A case series

BACKGROUND: Many women with eating disorders (EDs) have social impairments and difficulties with flexibility. It is unclear to what extent these are manifestations of an underlying autism spectrum disorder (ASD); or whether they are instead the consequence of starvation, anxiety, low mood or obsessive compulsive disorder, all of which are highly prevalent in EDs. The resolution of this clinically and theoretically important uncertainty will require the use of gold-standard ASD assessment measures. To date these have not been employed in ED research. This case series is the first report of a well-validated, direct-observational measure of ASD, the Autism Diagnostic Observation Schedule (ADOS), being administered to women with EDs. We aimed to learn about the feasibility of the ADOS in this population, and to contribute to debates about whether a sub-group with EDs really have ASD. METHODS: Ten women (mean age = 26.4 years, range = 19 to 38 years) who had a suspected ASD due to social and flexibility difficulties and were receiving treatment for ED (seven anorexia, two ED not otherwise specified, one bulimia) at a specialist service (four inpatient, six outpatient) received an ADOS Module 4 assessment. RESULTS: All 10 participants completed all activities of the ADOS Module 4. Five scored in the ASD range on the ADOS diagnostic algorithm. An additional two were judged likely to have ASD, even though they scored below the ADOS’s diagnostic threshold. This was on the basis of clinical observation, participant self-report and parent report. The seven women who we estimated to have ASD all reported autistic difficulties prior to the onset of their ED. They commonly described longstanding non-autistic neurodevelopmental problems, including dyslexia, dyspraxia and epilepsy. Only one had a childhood diagnosis of ASD. CONCLUSIONS: A substantial proportion of women with EDs who present with social and flexibility difficulties may have an unrecognised ASD, indicated by a constellation of autistic difficulties that appears to predate the onset of their eating problems. The ADOS is a useful component of an ASD assessment for adult women with ED.