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, Virginia Carter Leno introduced her paper that was published in 2024 and is interviewed by Ellen Maloney, EDAC peer researcher. Virginia Carter Leno (she/they) is a researcher at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN), in King’s College London. Her research heavily focuses on emotional and behavioural characteristics associated with autism and ADHD.
Paper Synopsis
The full paper can be found here.
AIMS:
This study emphasizes the importance of centring mental health research on the priorities of Autistic and ADHD communities, with lived / living experience of eating disorders. Autism and ADHD often overlap and can lead to increased health challenges, including eating disorders, but existing treatments don't always meet the needs of neurodivergent individuals. To address this, researchers collaborated directly with autistic people and those with ADHD who have experienced disordered eating to identify key research areas. They developed a list of top research priorities that reflect the needs of these communities.
KEY FINDINGS:
The top priorities identified can be separated into two overarching themes, ‘improving outcomes’ and ‘identifying causal mechanisms’.
Improving Outcomes
Improving Clinical Services
The top subtheme identified was about making eating disorder treatments better for Autistic people and / or those with ADHD. Right now, there are no specific guidelines or evidence for effective treatments, especially for those with ADHD. It’s also important to identify and avoid treatments that are harmful, which can often be overlooked. Training healthcare providers on neurodiversity could improve their ability to support these individuals.
Improving Psychoeducation/Preventative Medicine
A further subtheme is about preventing eating disorders in neurodivergent people by providing better information and education. The goal is to help people understand autism and / or ADHD and recognize potential triggers and early signs of disordered eating. Educational resources should focus on both understanding neurodiversity and celebrating strengths, with community support being particularly helpful for those newly diagnosed.
Identifying Causal Mechanisms
Identifying Risk Factors
This subtheme relates to how and why eating disorders might be different for neurodivergent individuals, compared to neurotypical people. The questions identified were ‘What are other factors that may increase risk of disordered eating in neurodivergent people?’ and ‘Is there a difference between the underlying reasons for disordered eating in neurodivergent vs. neurotypical people?’ Research shows that for Autistic women with anorexia nervosa, there are different underlying reasons for their eating disorder than in neurotypical people. For example, Autistic people often use restrictive eating as a way to cope with stress and emotional challenges linked to being autistic in a neurotypical world rather than being driven by weight and body image concerns. Studying how stress affects eating disorders in both neurodivergent and neurotypical people, and whether traditional risk factors apply to neurodivergent individuals, would be a valuable avenue of research stemming from this priority. Research should look at existing studies and data to better understand these differences, which could help improve prevention and treatment strategies for eating disorders in neurodivergent people.
Understanding the Role of Autistic/ADHD Cognitive Profiles
This subtheme highlights the importance of exploring how cognitive traits associated with autism and ADHD, such as sensory sensitivities or cognitive flexibility, may contribute to disordered eating. Better understanding these links, particularly in those with ADHD, can lead to more effective interventions.
METHOD:
This research was conducted using a two-step process: an online survey and an in-depth workshop. The survey gathered input from a diverse group of 71 participants who identified with a diagnosis of autism or ADHD, who have experienced eating disorders. They shared their thoughts on what might cause or protect against these disorders, and what kinds of support are helpful or not.
Researchers then narrowed down the survey results to 15 key topics, which were discussed in detail by 14 participants during the workshop. These participants helped rank the most important research questions, considering different perspectives, such as those of people with lived experience, the general public, service providers, and policymakers. The outcome was a list of the top 10 research priorities to guide future research on eating disorders in Autistic people and / or those with ADHD.
IMPACT:
This work intends to inform academics and organisations on areas requiring further research and funding in field of eating disorders. It is hoped that future studies stemming from these research priorities will promote positive outcomes for neurodivergent individuals. These research priorities have been identified by the community who will be affected by research, which is an important step towards meeting the needs of neurodivergent people.
DISSEMINATION:
This study has been published in The Lancet Journal of Psychiatry and can be read here!
SUMMARY:
This priority-setting research centres the needs of Autistic people and / or those with ADHD who have experienced eating disorders, involving them as active partners in the process. This collaborative approach builds trust and ensures the research is relevant. The goal is to better understand why neurodivergent people are more vulnerable to eating disorders and how to best support them, ultimately helping them live healthier, happier lives.
