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Service Experiences of Autistic Women with Anorexia Nervosa
Anorexia Nervosa (AN) is a severe, restrictive eating disorder (ED). 20-30% of women in treatment for AN are on the autism spectrum (Huke et al., 2013). Moreover, autistic women receiving treatment for AN have poorer outcomes compared to non-autistic women receiving the same treatment (Stewart et al., 2017; Wentz et al., 2009). There has been limited research investigating autistic women’s experiences of ED services. This project is part of the Study of Eating Disorders in Autistic Females (SEDAF).
Objectives:
To explore experiences of ED services from the perspectives of autistic women with experience of AN, the parents of autistic women, and professionals working in relevant services.
Methods:
Interviews covering ED service experiences were conducted with 15 autistic women with experience of AN (mean age 32 years, range 25-38), 15 parents, and 15 professionals working in ED and/or autism services. A collaborative approach to thematic analysis (Braun & Clarke, 2006) was used to identify themes for each of the three groups. Autistic women with experience of AN acted as advisors to the study. They helped develop the interview schedule and contributed to the data analysis and interpretation.
Results:
Preliminary analysis has focused on the interviews provided by the autistic women.
Service Engagement: Services were reported to lack understanding of autism. Autism-related social and sensory difficulties were often seen as a failure to engage with treatment and sometimes led to discharge. Not yet having a diagnosis of autism invariably led to autistic behaviours being misinterpreted.
Treatment Approaches: Common therapeutic approaches included cognitive behavioural therapy (CBT) and dialectic behaviour therapy (DBT). CBT was helpful for some autistic women, but many suggested the approach was too abstract and their difficulties in thinking flexibly held them back. DBT was seen as more helpful due to its focus on emotion regulation and practical skills. Participants generally favoured individual therapy, as they disliked speaking in front of others or had difficulty following and engaging in group conversation.
Service Improvements: Providing information before an inpatient admission was valued. Moreover, meetings with staff and a tour of the inpatient ward allowed autistic women to feel more prepared before being admitted. Individualised approaches and staff with an understanding of autism improved autistic women's engagement and their trust in services’ ability to treat them.
Conclusions:
Autistic women reported being unable to fully benefit from the services they were offered, which is likely to impact on their well-being and treatment outcomes. This difficulty with engagement was primarily attributed to a lack of understanding of and adjustment for autism within services. However, the women provided insight into service and treatment approaches that could best meet their needs. This research may inform service adaptations to meet the needs of autistic individuals as well as the development of autism-specific interventions to treat AN.