Autistic people and those with attention deficit hyperactivity disorder are at a high risk of developing an eating disorder. While there is limited evidence on the relationship between other forms of neurodivergence and eating disorders, research suggests associations between giftedness, intellectual disability, obsessive–compulsive disorder, psychosis, Tourette’s syndrome, and disordered eating. Factors underlying disordered eating and/or eating disorder risk for neurodivergent people are multifaceted and complex, encompassing a wide range of intertwined psychosocial, environmental, and biological processes. Moreover, research shows that neurodivergent individuals experience poorer treatment outcomes compared to neurotypical individuals. However, there is a paucity of research in this area overall. More specifically, lived experience-led research remains rare, despite its critical role for improving individualised eating disorder care, as well as mental healthcare more broadly. Indeed, the importance of eating disorder care individuation is increasingly being recognised, particularly within the context of neurodivergence, given the heterogeneous experiences and support needs of neurodivergent people affected by disordered eating and/or eating disorders. Furthermore, despite documented overlaps between various forms of neurodivergence (e.g., co-occurring autism and attention deficit hyperactivity disorder), research looking at eating disorders in the context of neurodivergence through a transdiagnostic perspective is scarce. This lived experience-led narrative review aims to shed light on the intersectional factors underlying elevated disordered eating and/or eating disorder risk for neurodivergent individuals. First, an overview of prevalence data is provided, followed by a thematic framework identifying factors underlying disordered eating and/or eating disorder risk in relation to neurodivergence. A critical appraisal of current eating disorder research and care is then offered before suggestions for neurodiversity-affirming eating disorder care are made. In this view, this paper offers a foundation for future empirical work in this nascent field of inquiry by providing a lived experience-led, transdiagnostic, and intersectional account of eating disorders in the context of neurodivergence.

Although the inclusion of individuals with lived experience is encouraged within the research process, there remains inconsistent direct involvement in many mental health fields. Within the eating disorders field specifically, there is a very strong and increasing presence of lived experience advocacy. However, due to a number of potential challenges, research undertaken in consultation or in collaboration with individuals with lived experience of an eating disorder is scarce. This paper describes the significant benefits of the inclusion of individuals with lived experience in research. The specific challenges and barriers faced in eating disorders research are also outlined. It is concluded that in addition to existing guidelines on working with lived experience collaborators in mental health research, more specific procedures are required when working with those with eating disorders.

The ethical approach to treatment non-response and treatment refusal in severe-enduring anorexia nervosa (SE-AN) is the source of significant ethical debate, particularly given the risk of death by suicide or medical complications. A recent article proposed criteria to define when anorexia nervosa (AN) can be diagnosed as ‘terminal’ in order to facilitate euthanasia or physician-assisted suicide (EAS), otherwise known as medical assistance in dying, for individuals who wish to be relieved of suffering and accept treatment as ‘futile’. This author utilises their personal lived experience to reflect on the issues raised, including: treatment refusal, iatrogenic harm, suicidality and desire to end suffering, impact of diagnosis/prognosis, schemas, alexithymia, countertransference, ambivalence, and holding on to hope. Within debates as critical as the bioethics of involuntary treatment, end-of-life and EAS in eating disorders, it is crucial that the literature includes multiple cases and perspectives of individuals with SE-AN that represent a wide range of experiences and explores the complexity of enduring AN illness, complex beliefs, communication patterns and relational dynamics that occur in SE-AN.

Eating disorders (EDs) are complex, multifaceted conditions that significantly impact quality-of-life, often co-occur with multiple medical and psychiatric diagnoses, and are associated with a high risk of medical sequelae and mortality. Fortunately, many people recover even after decades of illness, although there are different conceptualisations of recovery and understandings of how recovery is experienced. Differences in these conceptualisations influence categorisations of ED experiences (e.g., longstanding vs. short-duration EDs), prognoses, recommended treatment pathways, and research into treatment outcomes. Within recent years, the proposal of a ‘terminal’ illness stage for a subset of individuals with anorexia nervosa and arguments for the prescription of end-of-life pathways for such individuals has ignited debate. Semantic choices are influential in ED care, and it is critical to consider how conceptualisations of illness and recovery and power dynamics influence outcomes and the ED ‘staging’ discourse. Conceptually, ‘terminality’ interrelates with understandings of recovery, efficacy of available treatments, iatrogenic harm, and complex co-occurring diagnoses, as well as the functions of an individual’s eating disorder, and the personal and symbolic meanings an individual may hold regarding suffering, self-starvation, death, health and life. Our authorship represents a wide range of lived and living experiences of EDs, treatment, and recovery, ranging from longstanding and severe EDs that may meet descriptors of a ‘terminal’ ED to a variety of definitions of ‘recovery’. Our experiences have given rise to a shared motivation to analyse how existing discourses of terminality and recovery, as found in existing research literature and policy, may shape the conceptualisations, beliefs, and actions of individuals with EDs and the healthcare systems that seek to serve them.

Research into the risk of anorexia nervosa (AN) has examined twin pairs to further the understanding of the contributions of genetics, trait inheritance, and environmental factors to eating disorder (ED) development. Investigations of twin experiences of EDs have been biologically-based and have not considered the qualitative, phenomenological aspects of twin experiences. A gap in the literature exists regarding understanding of discordant twins with EDs. This research was developed in response, with the aim to deepen understanding of AN in discordant twins and to create novel ideas for further research and testing. The case studies presented in this article provide lived experience insights of two identical discordant twin pairs: one twin pair discordant for longstanding AN and one twin pair discordant for ‘atypical’ AN (the twin with AN has recovered). The perspectives and experiences of each co-twin (one with AN and one without) explore a number of factors that may have contributed to twin discordance in these cases, and how each twin has responded to the impact of AN in their lives. Through use of first-person accounts in case study presentation, this article centres social justice values of lived experience leadership and involvement in research. This article aims to extend current knowledge and understanding of EDs in discordant twins, particularly regarding risk for ED development, ED duration, diagnosis and treatment, and recovery processes.

Disordered eating or eating disorders (ED) and psychosis commonly co-occur and have a degree of overlap, however there are no current clinical guidelines or comprehensive clinical guidance for integrated treatment. This lived experience case offers insight into symptom cross-over, perception and beliefs that may occur in coexisting ED and psychosis (i.e., eating disorder voice, psychotic voice-hearing, delusional beliefs about food, eating disorder-driven overvalued beliefs about eating/the body, body image disturbance, depersonalization, derealization). The detailed examples within this case highlight helpful treatment approaches to support trust and safety in care and prevent patient deterioration in co-occurring diagnosis of longstanding anorexia nervosa, schizoaffective disorder and trauma/PTSD. Lived experience involvement in research and clinical guidance development is needed in order to further understanding of co-occurring conditions such as ED, psychosis and trauma, to improve shared decision-making, and treatment personalization.