ArticleJournal of eating disorders2025
Understanding the child and adolescent eating disorder treatment experiences of autistic people and parents.
Article in Journal of eating disorders, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- Eating Disorder Focused Family Therapy with Autistic Children and Young People: A Narrative Review of Recent Developments.Current psychiatry reports · 2026Review
- Iatrogenic Harm, Psychotherapy, and Eating Disorders: An Urgent Call to Action.International journal of mental health nursing · 2026Article
- Iatrogenic harm and premature treatment discontinuation in eating disorders: a lived experience response to Wade and Schmidt (2026).Journal of eating disorders · 2026Article
- Iatrogenic harm in eating disorder treatment: a lived experience-led call for epistemic justice and accountability.Journal of eating disorders · 2026Article
- Dismantling the Diagnostic Construct of Borderline Personality Disorder: A Critical Discourse Analysis.International journal of mental health nursing · 2026Article
- Cognitive behavioural therapy is not universally evidence-based: implications for eating disorders.Journal of eating disorders · 2026Article
- Self-reported interoceptive sensibility across eating disorder symptoms: associations with sociodemographic factors.Journal of eating disorders · 2026Article
- When psychiatry does not learn: Epistemic humility, ignorance culture, exclusion culture and diagnostic weaponisation.PLOS mental health · 2026Article
- Regulating with food: a qualitative study of Neurodivergent experiences in adults with binge eating disorder.Journal of eating disorders · 2025Article
- "No one was coming to save us": an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa.Journal of eating disorders · 2025Article
- A pilot study investigating the acceptability and feasibility of a group intervention for parents of autistic young people with anorexia nervosa within a specialist eating disorders service.Journal of eating disorders · 2025Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAutistic people are overrepresented in eating disorders services and often require more intensive and extended treatment. Little is known about the eating disorder treatment experiences of autistic young people. The aim of this research was to understand the child and adolescent eating disorder treatment experiences of autistic people and parents of autistic young people.
methodsConstructivist grounded theory was employed. Nine autistic people with lived experience of an eating disorder as an adolescent as well as nine parents of autistic young people engaged in paediatric eating disorders treatment were recruited through purposive sampling and then interviewed using a semi-structured design. Each interview was transcribed and analysed to identify themes and develop emergent theory directly from the data.
resultsTwo major themes emerged (1) Misunderstood and (2) Safe and supportive eating disorder treatment for autistic young people and their families. Being ‘Misunderstood’ was found to occur across eight different domains including problems related to diagnosis, misattribution, neuro-normative definitions of eating and recovery, a one size fits all approach, siloed expertise, limited expertise and treatment options for eating disorders outside of anorexia nervosa, family neurodivergence and autism not being accommodated. The effects of being misunderstood included an increased burden of case management and advocacy, distress and trauma, mistrust of health professionals, identity disruption, and setbacks in recovery. ‘Safe and supportive eating disorders treatment for autistic young people and their families’ is informed by lived experience and built on a foundation of general care principles and autism-specific elements.
conclusionsBeing misunderstood is a recursive process that occurs across multiple aspects of eating disorder care. Autistic young people and their families desire and need safety and understanding. This is achieved through care characteristics that promote connection and nuance, and autism specific adaptations and accommodations that provide optimal support conditions and strengthen therapeutic alliance.
trial registrationThis research was approved for prospective registration on Open Science Framework (OSF) on the 8th December 2023.
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