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

• Published in: European eating disorders review Vol. 30; no. 5; pp. 580 - 591
• Main Authors: Sedgewick, Felicity, Leppanen, Jenni, Austin, Amelia, Tchanturia, Kate
• Format: Journal Article
• Language: English
• Published: England John Wiley and Sons, Limited 01.09.2022
• Subjects: Autism; Autistic Disorder - diagnosis; definitions; Eating disorders; Feeding and Eating Disorders - diagnosis; Humans; Qualitative Research; recovery; eating disorders; recovery; definitions; autism
• ISSN: 1072-4133; 1099-0968; 1099-0968
• DOI: 10.1002/erv.2873

Background Definitions of recovery from an eating disorder (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 were collected as part of an online study looking at EDs, autism and relationships. About 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. Key points Definitions of recovery from ED have traditionally relied on clinical, rather than patient, priorities. Both autistic and non‐autistic people with a history of ED reported similar definitions of recovery, including weight restoration, lack of ED behaviours and cognitions, improved emotional responses around food and weight, the ability to get on with life, and the fact that they had ongoing challenges. The paper highlights that patients often think about recovery in ways which map on to clinical definitions, with some additional factors which could be utilised to support patients in this phase of illness.