At EDAC we are committed to making research accessible. Our Plain Speaking Summaries include plain language text on published papers and an interview with the authors. In this Plain Speaking Summary Dr Emy Nimbley introduced her paper that was published in 2023 and is interviewed by Ellen Maloney, an EDAC peer researcher.
Paper Synopsis
The full paper can be found here
Encouragingly, eating disorder researchers are starting to explore definitions of recovery that are rooted in lived/living experiences and draw on a range of factors, including physical factors, behaviours, thoughts and moods. What is missing, however, is exploring definitions of recovery in subgroups of eating disorders, such as an autism. We wrote an opinion piece, reviewing how we can apply and extend what we know about broader eating disorder recovery research to the unique experiences of Autistic people with an eating disorder.
We proposed that future research is urgently needed to explore definitions and understandings of recovery in Autistic individuals with an eating disorder. Fundamentally, this research should be led by Autistic people, for Autistic people, and should include a range of physical, behavioural and psychological factors in their definitions.
We started by reviewing what we know about autism and eating disorders, discussing how around a third of those with AN also show high Autistic traits. Eating disorder treatment outcomes and experiences are also poor in Autistic people, with longer inpatient treatments, multiple referrals and poor psychosocial outcomes. Turning to recovery research in broader eating disorders, we found that recent research has emphasised the importance of including multiple factors beyond weight and physical criteria, and that definitions should be person-centred and rooted in the unique needs and experiences of the individual. Applying this approach to autism and eating disorders, we recommended what needs to be done, why it should be done, possible difficulties with getting it done and made specific recommendations for future research on how to achieve autism-led definitions of recovery from an eating disorder.
We recommended that future studies are urgently needed to explore definitions of recovery in Autistic individuals with an ED that are led by Autistic researchers with lived/living experience and include a broad range of factors. We then made several specific recommendations on how to conduct this research, split into three categories: (1) Access to participants; (2) Targeting participants; (3) Conducting the research.
Access to participants. We suggested that novel research and recruitment approaches should be employed that can be used safely in severely ill patients; to improve identification of autism in clinical services; and to develop an efficient and effective screening for autism in clinical and research settings. By doing this, we can increase our awareness of and access to Autistic people with eating disorders in the first place and start to conduct research exploring their experiences.
Targeting participants. We suggested to include more Autistic individuals in research across the lifespan; include more diverse samples, reflecting a broader range of ethnicity, gender, and socio-economic background; and to include more representative samples reflecting all needs (physical, verbal, psychological and social). By doing this, we can start to conduct research that is reflective of the broad range of Autistic experiences and conduct more inclusive, meaningful research.
Conducting the research. We suggested to consider the timing of research, making sure to collect data across all stages of the treatment process in order to understand if and how definitions of recovery may change; to consider location of research in services, not just focusing on inpatient, but also in outpatient, day services and community services; and to consider cross-disciplinary collaboration, working with other fields to apply their findings or approaches to the autism and eating disorder field. By doing this, we can begin to understand definitions of recovery in Autistic people across the broad range of eating disorder experience and to conduct novel, impactful findings.
Hopefully, this commentary will have a positive impact on the autism and ED community in a number of ways. Firstly, it aims to encourage researchers working in the field to include peer researchers in the design, development, analysis and sharing of their research. This will hopefully help to create a collaborative relationship between Autistic people with eating disorders and researchers working in the field, improving trust and making sure that recovery research is conducted by Autistic people, for Autistic people. It is also hoped that developing these definitions will help the community and those supporting the community understand how to approach recovery, and translate directly to improving treatment outcomes and recovery expectations for Autistic people with an eating disorder.
This opinion paper has been published in the International Journal of Eating Disorders and is open access. You can read the full piece here.
This opinion piece proposed that we urgently need to understanding recovery and how it defined in Autistic people with lived/living experience of an eating disorder. We proposed that future research should involve Autistic researchers with lived/living experience, and account for a range of physical factors, as well as behaviours, thoughts and moods. Specific recommendations were made to improve access to participants, targeting participants and to conducting the research. Hopefully, future autism and eating disorder researchers will follow these suggestions and conduct collaborative, representative and translatable findings that will improve our understanding and management of recovery in Autistic people with an eating disorder.
