“From that moment, everything has changed”: The experience of women with anorexia nervosa receiving a diagnosis of autism

Objective

Autism and eating disorders (ED) frequently co-occur, particularly in women. Autistic individuals are often undiagnosed when they present to mental health services and many receive their autism diagnosis during or after ED treatment. This study sought to understand the experiences of autistic women with co-occurring anorexia nervosa (AN) receiving an autism diagnosis.

Method

Secondary data analysis was conducted on 17 semi-structured interviews with autistic women with AN using reflexive thematic analysis. Participants had a diagnosis of autism, had current or past experience of AN, were female-identifying and aged 18 or above.

Results

Participants experienced missed opportunities for autism diagnosis along with misdiagnoses and misunderstandings from healthcare professionals. Participants tended to receive their diagnosis at the point of crisis and experienced being passed between autism and ED services. Receiving a diagnosis helped participants make sense of their experiences and take control of their lives but also brought feelings of shock and distress.

Conclusions

While autism diagnosis is often a positive experience for autistic women with AN, a range of emotions can be experienced. The findings highlight a need for better and earlier identification of autism among women with EDs, alongside appropriate post-diagnosis support and ED treatment that is adapted to autistic individuals' needs.