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Abstract 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.

Abstract Background Deeply engaging with the expertise of those who have experienced or supported someone with an eating disorder can add to a growing body of knowledge about recovery processes. In this qualitative study, we sought to explore and generate nuanced understandings of recovery experiences of people with a lived ED experience (first hand or as a caregiver) who were working as mentors in the field. To do this, we focused on changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery. Method We conducted semi-structured interviews with 27 people with an eating disorder history, either through personal lived experience (n = 14) or as a caregiver of a loved one with an eating disorder (n = 13). We undertook a reflexive thematic analysis of the data through a critical realist lens. Results We developed three themes, which illustrate the nonlinearity, relationality, and systemically linked nature of changes across experiences of having and recovering from an eating disorder. The first theme focuses on expansion; participants described how their worlds got bigger as they explored who they were becoming and discovered new ways of living in line with their values. The second theme emphasizes the balance between support and autonomy participants described as important for enabling change to occur across the recovery process. The last theme highlights the ways in which changes throughout the recovery process entwined with systemic factors, including actively pushing back against diet culture and weight stigma. Conclusions Participants’ stories highlight interactions between individual, relational, and societal shifts that occur throughout the course of an ED and into recovery. They support ongoing calls to orient to ED recovery as situated within a broader social milieu, which invites us to build supportive environments to enable expansion and flourishing.

Abstract 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.

Abstract Informed by our lived experiences with eating disorders, our work providing direct support to communities underserved by existing healthcare structures, and our commitment to social justice, we are deeply troubled by several aspects of the proposed characteristics for “terminal” anorexia nervosa outlined by Gaudiani et al. in Journal of Eating Disorders (10:23, 2022). We have identified two substantial areas of concern in the proposed characteristics provided by Gaudiani et al. and the subsequent publication by Yager et al. (10:123, 2022). First, the original article and the subsequent publication fail to adequately address the widespread inaccessibility of eating disorder treatment, the lack of parameters for what constitutes “high quality care”, and the prevalence of trauma experienced in treatment settings for those who do access treatment. Second, the characteristics proposed for “terminal” anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes. Overall, we believe these proposed characteristics in their current form stand to detract from, rather than assist, the ability of patients and providers to make informed, compassionate, and patient-centered decisions about safety and autonomy both for individuals with enduring eating disorders and for individuals with more recently diagnosed eating disorders.

Increasingly, social life—and accordingly, social research—is conducted in online environments. Asynchronous online focus groups (AOFGs) have emerged as an important tool to conduct remote research with geographically diverse populations. However, there remain few systematic accounts of AOFG methods to guide researchers’ decision-making in designing and implementing studies. This paper seeks to address this gap by describing a recent study on body image and health among transgender and gender diverse (TGD) young adults. In this study, eight AOFGs were conducted in August-October 2019 with 66 TGD young adults residing in 25 U.S. states. Each AOFG lasted four consecutive days with two prompts posted by moderators per day. Overall, participant satisfaction with AOFGs was high: 98% reported their experience was excellent, very good, or good and 95% would be somewhat or very likely to sign up for another AOFG. This example is used to illustrate key methodological decision-points, acceptability of the method to participants, and lessons learned. The goal of this paper is to encourage other researchers, particularly health researchers, to consider using AOFGs and to engage with the method’s strengths and limitations in order to develop new opportunities for online technologies to enrich the field of qualitative health research.