Autistic women's experiences of eating disorder services

 ‘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

Please Tweet us or email Charli (babbc@cardiff.ac.uk) 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 better understand autistic women’s experiences of accessing eating disorder services.

• Autistic women face barriers when accessing eating disorder services, often because the services are not autism-friendly.

• This study can help eating disorder services to be better equipped to support autistic service users.

Why did we do this research?

Previous research shows that around 20-30% of women with anorexia nervosa are autistic. However, researchers have found that current treatment options do not work as well for autistic people with an eating disorder as it does for those who are not autistic. In order to improve eating disorder treatment for autistic people, we need a better understanding of their experiences (both good and bad) of using eating disorder services.

What did we do in this study?

We interviewed 15 autistic women with anorexia nervosa, 12 parents of autistic women, and 11 healthcare professionals working in eating disorder services. We analysed the interviews and developed themes that seemed particularly relevant. The research team included two autistic women, who had experience of anorexia nervosa themselves. They gave advice when planning the interviews to make sure all participants were comfortable when 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 developed three main themes to describe the data from our interviews.

1. Misunderstanding autism and autistic traits

Autistic women told us that they felt their autistic traits were misinterpreted by staff as behaviours relating to their eating disorder and were wrongly labelled as being “resistant” to treatment. Most women did not know they were autistic when they first accessed eating disorder services. However, even after they received an autism diagnosis, many women still felt unsupported and that their autistic traits were not taken into consideration. Only a few women felt services were better at accommodating their needs, e.g. sensory sensitivities.

2. One treatment does not fit all

Autistic women told us how they felt about different types of therapy that they had accessed in eating disorder services. Cognitive Behavioural Therapy (CBT), which is recommended for the treatment of anorexia nervosa, was often described as unhelpful in its standard form without any adaptations. Group therapy was also difficult for many autistic women, because of the additional social demands in group settings.

Some treatment options that autistic women found more accessible and useful. These included Occupational Therapy, which supports women with practical challenges in their day-to-day life, and Dialectical Behaviour Therapy (DBT), which focuses on things like emotion regulation and mindfulness.

3. Improving accessibility and engagement within services

Where appropriate adaptations were made, autistic women felt they were able to better engage with the treatment. Eating disorder staff who were able to adapt their own communication styles were particularly helpful.

Autistic women also found it helpful when services were flexible to meet their needs. Even small adaptations to the service environment could make a huge difference to the autistic women’s ability to engage with treatment. 

What have we learnt?

Our study improves our understanding of autistic women’s experiences of eating disorder services. Our findings suggest that autistic women’s needs are not being met by eating disorder services. Autism-informed adaptations are often not offered. More autism awareness and training is needed so that eating disorder services can better support autistic people.

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.