What Causes and Maintains Anorexia Nervosa in Autism?

Poster Presentation
Thursday, May 2, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
J. Brede1, C. Babb2, C. R. Jones3, L. Serpell1, J. R. Fox4 and W. Mandy5, (1)Research Department of Clinical, Educational and Health Psychology, University College London, London, United Kingdom, (2)Cardiff Univeristy, Cardiff, United Kingdom, (3)Wales Autism Research Centre, Cardiff University, Cardiff, United Kingdom, (4)South Wales Doctorate in Clinical Psychology, Cardiff Univeristy, Cardiff, United Kingdom, (5)University College London, London, United Kingdom of Great Britain and Northern Ireland

Anorexia Nervosa (AN) is a severe, debilitating and potentially life-threatening eating disorder (ED). It is consistently found that 20-30% of women with AN are on the autism spectrum (Huke et al., 2013). Compared to non-autistic anorexic women, autistic women in ED services benefit less from current treatment approaches and have poorer outcomes (Stewart et al., 2017; Wentz et al., 2009). To improve care for autistic women with AN, a better understanding of how AN develops and persists in autistic individuals is required. This project is part of the Study of Eating Disorders in Autistic Females (SEDAF).


This study has two aims:

Firstly, to identify causing and maintaining factors of AN in autism from the perspective of autistic women, parents and health care professionals.

Secondly, to develop a model of autism-specific mechanisms for restrictive eating disorders.


In-depth interviews were conducted with 45 participants: 15 autistic women with experience of AN (average age 32 years, range 23-58), 15 parents, and 15 clinicians with relevant experience. A collaborative approach to thematic analysis (Braun & Clarke, 2006) was used to identify patterns of meaning in the data.

Autistic women with experience of AN acted as advisors to the study. They helped develop the interview schedule and procedure and contributed to data analysis and interpretation.


Causing and maintaining factors of AN that were identified by our autistic participants related to the following themes: social difficulties, sensory sensitivities, difficulties with emotions, sense of self and identity, need for control and predictability, and certain thinking styles. Parents and professionals provided additional insights into early development, and how transition points often trigger eating problems. AN in autistic women seems to be distinct from AN in non-autistic women, in terms of its presentation and underlying mechanisms. AN is conventionally understood as being driven by weight and shape concerns, but these were rare amongst autistic women. Instead, their eating difficulties frequently stemmed directly from their autism, for example reflecting sensory aversions to foods or a special interest in calorie counting. Also, eating difficulties arose as an attempt to cope with the stresses of being autistic. For example, starvation helps to numb anxiety and sensory overload; and controlling food intake can counter anxiety arising from being in an unpredictable environment. Based on these findings we developed a model of autism-specific mechanisms for restrictive eating difficulties.


The discoveries made in this study show that autistic women with AN need autism-specific treatments. This may explain why autistic women with AN currently have such poor outcomes, as they are given standard treatments that fail to address the mechanisms underlying their EDs. This research can contribute to the development and testing of interventions to treat AN and to prevent its development in autistic girls and women.