Autistic women are much more likely to develop anorexia than non-autistic women. This project will provide evidence to improve treatment and services.
More than 1 in 5 women with anorexia are autistic. There is an urgent need for better mental health care for autistic women with anorexia to ensure they can live healthy, happy lives.
Most current anorexia therapies in the NHS focus on weight and body shape but these may not be important factors in autistic women with the disease.
Research shows that anorexia in autism is caused by:
- high levels of anxiety
- rigid, rule-driven eating and exercising behaviour
- sensory problems with food
- difficulties sensing hunger
Explaining the need for this project
Anorexia Nervosa is a severe eating disorder that affects women and men.
Autistic women are much more likely to develop anorexia than non-autistic women.
Anorexia has the worst outcomes of any mental health condition.
The research process
The researchers interviewed 15 autistic women with anorexia nervosa, 13 parents of autistic women and 16 clinicians and looked for common themes across their responses. They identified barriers commonly faced by autistic women in eating disorders services.
This was followed by a quantitative study involving 256 people, which compared the experiences of autistic women and non-autistic women with restrictive eating disorders.
The researchers used their findings to develop a theoretical model aiming to better explain how restrictive eating may develop and present differently in autistic women.
The study found that many women with severe restrictive eating disorders may be autistic but undiagnosed, with autism diagnosed on average almost ten years later than eating disorders in this group. Eating disorders services often fail to meet the needs of autistic clients. Key problems include:
- lack of timely autism diagnosis
- low levels of knowledge about autism amongst staff
- some psychological treatments being unsuitable for autistic people
- a lack of attention to the relationship between autistic traits and features of eating disorders.
Many autistic women diagnosed with anorexia nervosa are more likely to have Avoidant-Restrictive Food Intake Disorder (ARFID).
The researchers’ autism-specific model proposes that restrictive eating for autistic people can often be due to sensory processing and difficulty coping with distress caused by unaccommodating environments and people. This differs from typical presentations of restrictive eating disorders which are often linked to body image and worries about weight gain.
How this project is making a difference
This research has had considerable impact with over 18000 downloads of the research paper describing the autism-specific theoretical model in the first year following publication. The quantitative study produced the largest clinical dataset to date on autism and eating disorders.
The researchers have developed workshops for clinicians on how to recognise and work with autistic clients in eating disorders services. The researchers have also consulted with NHS England to influence policy. The researchers aim to develop and evaluate a training package for clinicians.
The researchers intend to deliver further research including:
- looking at risk factors and protective factors for eating disorders in autistic people, with a focus on the person-environment fit
- developing and evaluating new treatments tailored to autistic people
- improving practice around screening and assessment of autism in eating disorders services.
The research also led to other related projects about autism and mental health, including a systematic review of barriers to receiving support from mental health services experienced by autistic people.