Different pathways, same goals: a large-scale qualitative study of autistic and non-autistic patient-generated definitions of recovery from an eating disorder

Background: Definitions of recovery from ED have generally been formulated around clinical conceptualisations, rather than based on the views of patients. This paper therefore asked those with lived experience of ED for their own definitions of recovery.

Method: Data was collected as part of an online study looking at EDs, autism and relationships. 173 participants identified as recovered from ED and gave free-response definitions of recovery. Responses were subject to thematic analysis.

Results: Seven major themes were identified: Weight restoration, Lack of ED behaviours, Thoughts and behaviours, Cognitions, Emotional responses, Getting on with life, and Ongoing challenges.

Conclusions: Many definitions of recovery given by those who have lived experience of ED echoed those used by clinicians and researchers. There were also points of divergence around the ongoing challenges of recovery. Our findings highlight the need for continuing support post-weight restoration to facilitate the successful long-term recovery for those with ED.