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Who is conducting this research?
The Study of Eating Disorders in Autistic Females (SEDAF) research group consists of researchers and clinicians at UCL and Cardiff University. This team has the added insight of autistic women who have lived experienced of eating disorders. The research was funded by the autism charity Autistica.
Autism and eating disorder booklet:
We had the pleasure of working with artist Ben Connors and a number of autistic women to illustrate some of our research findings and create a guide for healthcare professionals and others supporting autistic women with restrictive eating disorders:
Why is this research important?
Autistic individuals, particularly girls and women, have a higher risk of developing restrictive eating disorders, such as Anorexia Nervosa and Avoidant and Restrictive Food Intake Disorder (ARFID). Further, women with high autistic traits benefit less from current eating disorder treatments and care pathways than those with low autistic traits. This is problematic as restrictive eating disorders have serious consequences in terms of physical and mental health, and impact a person’s daily life.
Our research aims to better understand of how restrictive eating disorders in autistic individuals develop and persist and how to improve support for this group.
What does our research involve?
Our research combined qualitative and quantitative research.
We conducted interviews with autistic women, their family members and health care professionals to identify potential causing and maintaining factors of restrictive eating disorders in autistic women. We also asked them about practical barriers to referral, engagement and treatment for autistic women in eating disorder services.
Based on findings from these interviews we build the first theoretical model autism-specific mechanism underlying restrictive eating difficulties. We tested elements of this model in a larger survey-based study. We also used surveys and questionnaires to explore the clinical presentation of autistic individuals with restrictive eating disorders, compared to other autistic individuals without and non-autistic individuals with restrictive eating disorders.
Next steps:
Currently, there are no active studies being conducted by our group. However, we are analysing previously collected data and are working towards publishing and disseminating our findings.
Our research so far focused on autistics women and those with restrictive eating disorders, particularly Anorexia Nervosa. However, our findings might also be helpful for those with other gender identities and those with other forms of disordered eating. More research is needed to improve support for members of the autistic community who are underrepresented in current research. It will also be important to develop and test autism-informed adaptations to existing eating disorder treatments and preventative approaches.
Research output so far:
Our research has resulted in several academic publications:
“For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women https://link.springer.com/article/10.1007/s10803-020-04479-3
‘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 https://journals.sagepub.com/doi/10.1177/1362361321991257
A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK https://onlinelibrary.wiley.com/doi/full/10.1002/erv.2930
Towards identifying a method of screening for autism amongst women with restrictive eating disorders https://onlinelibrary.wiley.com/doi/full/10.1002/erv.2918