Lay summary of our latest publication on Anorexia Nervosa in Autistic Women

“For me, the anorexia is just a symptom, and the cause is the autism” – Investigating restrictive eating disorders in autistic women.

Please get email/Tweet us if you would like to receive a PDF version of this summary. You can also read the full research article here. 

Key points:

• This research study aimed to gain a better understanding of how Anorexia Nervosa develops and persists in autistic women.
• There seem to be autism-specific mechanisms that cause and maintain eating difficulties in autistic individuals.
• The findings of this study directly benefit affected individuals by raising awareness and helping eating disorder services to improve the way they treat autistic individuals.

Why did we do this research?

Anorexia Nervosa is an eating disorder, characterised by low body weight due to restricted calorie intake. Anorexia can have serious consequences for the health and quality of life of affected individuals. Previous research has shown that around a fifth of women treated for Anorexia are autistic or have high autistic traits. It is also known that current treatment approaches do not work as well for autistic women as for other women with Anorexia.

This study set out to better understand how Anorexia develops and persists in autistic individuals.

What did we do in this study?

We interviewed 15 autistic women with Anorexia, 12 parents, and 16 health-care professionals, who have worked with this client group. We analysed the interviews and developed themes that seemed particularly relevant. The research team included two autistic women, who had experience of Anorexia themselves. They gave advice when planning the interviews to make sure all participants were comfortable taking part. During the analysis, they reflected on their own experience and took into account what they knew about the experiences of others in their community.

What did we find?

We identified six themes. Not all of the themes affected all women, but most participants reported experiences relating to several of these themes. 

1)            Sensory sensitivities: 

Sensory sensitivities, for example related to noise or bright lights, made women’s day-to-day lives very stressful. Not eating made them numb, so they did not feel these sensations as much.

In addition, almost all of the participants said that autistic women experienced food-specific sensitivities, for example related to the texture, taste or smell of different foods. They limited their diet to avoid foods they did not like.

Some women also struggled with their ability to sense things inside their body. For example, some found the feeling of food moving around in their stomach very distressing. These women would eat very little to avoid discomfort. Others reported that they find it difficult to tell what hunger feels like and may simply forget to eat.

2)            Social interaction and relationships:

Difficulties with other people also affected autistic women’s eating.

Many women had difficulties with other people, including making friends, being bullied, and feeling lonely. This was exhausting and upsetting for them. Their eating disorder distracted them from their worries. Some women also talked about avoiding situations where they had to deal with other people. These places often happened to involve food, for example the school canteen. They started to skip lunch, not because they did not want to eat, but because of all the people there.

3)            Self and Identity:

Many autistic women struggled with their sense of self. They engaged in eating disorder behaviours to cope.

A lot of autistic women felt different from others. Many felt bad for struggling with things everyone else seemed to get on with just fine. None of the women knew that they were autistic when their eating disorder started. Some assumed they would feel better about themselves and be more popular, if they lost weight or were sportier. Others looked at what was important to other young women and tried to behave like them, for example by dieting. The eating disorder also gave them clear rules to live by. It simply became a way of coping in the neurotypical world.

People often assume that Anorexia is driven by a desire to lose weight or have a slim body shape. However, for many women in this study it was not that simple. Their difficulties ultimately related to their autism not being recognised.

4)            Emotional difficulties: 

Restricting their eating and engaging in other eating disorder behaviours helped autistic women to deal with difficult emotions.

Many women did not know what they felt or what to do when they were distressed. A lot of them had had difficult experiences in their life and struggled to cope with this. Many women had other mental health difficulties in addition to their eating disorder. Anxiety was especially common. Exercising excessively and not eating helped them to numb down these emotions and distract themselves from being upset.

5)            Thinking styles: 

The people we interviewed talked about certain ways of thinking that they felt contributed to the eating disorder. These ways of thinking are common amongst autistic people.

For example, some autistic women took public health advice or lessons they learnt at school about healthy eating very literally. They then developed rigid rules around eating and exercising. 

Autistic women’s thinking was also reported to be quite rigid and inflexible. This made it difficult for them to stop habits and overcome their eating disorder.

Autistic women’s eating disorder also related to their special interests, for example in nutrition, numbers on the scales, or counting calories. These interests were an important source of enjoyment to them. They helped them to deal with anxiety and stay calm.

6)            Need for control and predictability:

Anorexia helped autistic women to cope with uncertainty in their lives.

The eating disorder allowed autistic women to have control and introduced structure to their lives. Their eating disorder often got worse when they experienced something stressful or faced changes in their life, for example, when they went to a new school or university or when there were issues in their family. Going through puberty and puberty-related changes in their body and mood were also difficult for some women.

What have we learnt?

We listened carefully to autistic women with Anorexia and those who support them. Based on what they told us, we created a model to help us understand how eating difficulties may develop in autistic individuals. Autism and Anorexia seem to be closely linked. Some autism-related difficulties that autistic individuals experience in their life seem to directly give rise to eating difficulties, for example, food-related sensory sensitivities. Other issues are less directly linked to the eating disorder behaviours, for example, difficulties with emotions. However, the eating disorder seems to give them a way to numb these feelings or to distract themselves. The eating disorder also seems to bring calmness by providing clear rules and control. 

Autistic women with Anorexia might have poorer outcomes, because standard treatments fail to address autism-specific mechanisms underlying their eating disorder. 

What is next? 

There are many more questions for future research. For example, how distinct is Anorexia in autistic women from other women with Anorexia, who are not on the autism spectrum? Are the factors identified in this study specific to Anorexia in autistic individuals, or might they also play a role for other eating difficulties and picky eating in autism more generally? We hope that this study increases awareness of autism-specific restrictive eating disorder presentations and helps eating disorder services to better support autistic individuals. In the long term, this research might also help to develop autism-specific eating disorder treatments. It can also inform support for autistic girls and women to stop them from developing an eating disorder in the first place.  

We would like to thank all research participants who so generously gave their time to this research and shared their insights with us. Without them, this study would not have been possible. We would also like to thank Autistica for funding this study and for their support with recruitment. 


If you are interested in helping with similar research in the future, please get in touch with Charli Babb (BabbC@cardiff.ac.uk) or Janina Brede (Janina.brede@ucl.ac.uk) Twitter/Facebook: @SEDAF18