Not yet independently audited
This page was written from verified sources but has not yet passed the independent citation audit. Treat its claims as provisional.
Annotated sources¶
| Source | Type | Contribution | Limitation |
|---|---|---|---|
| Espíndola & Blay 2009, PMID 19225241 | Qualitative meta-synthesis, 24 studies | Identity, control, positive/negative meanings | Mostly female; studies 1990–2005; authors rated most B-grade |
| Harrop et al. 2023, PMID 36577133 | Lived-experience perspective | Classification consequences of “atypical” | Perspective, not prevalence study |
| Verma et al. 2024, PMID 37897094 | Lived-experience perspective | Case for reconceptualizing atypical AN | Perspective; authorship not population sampling |
| O’Connell 2023, PMID 34041954 | Autoethnography | Diagnostic identity and performance | One public scholarly account; not generalizable |
| Asaria 2023, PMID 37400874 / 38082348 | Lived-experience letters, single author | Argues against the “terminal anorexia” label as harmful; second letter addresses each proposed criterion | Two letters by one author; normative perspective, not a sample |
| Robb et al. 2026, PMID 42410953 | Mixed-methods stakeholder study (up to 219 quantitative, 182 qualitative) | Documents the actual distribution of lived-experience, caregiver and clinician views on the proposed criteria | Self-selected respondents; not a probability sample |
| Gaudiani 2025, PMID 40361218 | Letter by the original proposal's lead author | Formal disavowal of the term “terminal anorexia nervosa” | Single-author essay |
| Bauschka et al. 2025, PMID 40760030 | Collaborative ethics article | Dialogue across clinical/medical/lived experience | Not an outcome study |
| Beat | Public organization site | UK patient/carer support and advocacy | Service description; no independent effectiveness evaluation |
| ANAD | Public organization site | US peer-support services | Same |
| F.E.A.S.T. | Public organization site | International caregiver resources | Caregiver-centered; same |
| EDFA government directory | Government directory | Verifies Australian national carer role | Brief description; not outcome evidence |
| Beat — "Not Designed For Me: Transforming Eating Disorder Support for Autistic People" (report landing page, accessed 2026-09-30; launched 9 September 2026) | Patient-organization report drawing on a survey and accounts from Autistic people with eating disorders and their families | Treatment not adapted to Autistic people; consequences for trust, restrictive practice and carers | Landing page and launch announcement read; the report PDF itself was not retrieved. Self-selected UK respondents; all eating disorders, not AN alone; sample size given only as "hundreds". Added by the 2026-09-30 sweep |
| Duffy et al. 2026, PMID 42694663 | Service evaluation within a quality-improvement project, one inpatient unit | Young people's and staff views of autism-affirming resources for nasogastric feeding | 9 young people and 11 staff; uncontrolled; restraint reduction is a run-chart observation. Added by the 2026-09-30 sweep |
| Henningsson et al. 2026, PMID 42832022 | Phenomenological-hermeneutic interview study, Sweden | Adolescent girls' accounts of inpatient compulsory care for severe AN as a power struggle on four fronts — against staff, the eating disorder, fellow patients and parents — with frequent experience of being treated as the disorder rather than a person; reconciliation described as possible afterwards. Added by the 2026-10-21 sweep | 7 participants, mean age 15.3, one national context; abstract-level reading |
Coverage-limits note¶
The source set is not a representative survey. It overrepresents English-language, digitally accessible and publishable narratives. No theme frequency is estimated. Private social-media posts, closed support groups and identifiable individual stories were intentionally excluded.