4Q4: Dr Virginia Carter Leno on disordered eating, Autism and ADHD
Four questions for Dr Virginia Carter Leno, fellow at the Centre for Brain and Cognitive Development, Birkbeck, University of London, and co-author of a new research paper (published in The Lancet Psychiatry journal) that investigates the research priorities of autistic people and people with ADHD who have lived experience of disordered eating.
Keller, J., Herle, M., Mandy, W., & Carter Leno, V. (2024). The overlap of disordered eating, autism and ADHD: future research priorities as identified by adults with lived experience. The Lancet Psychiatry, DOI: 10.1016/S2215-0366(24)00186-X.
What does your research investigate?
Although we know that disordered eating and diagnoses of eating disorders are more prevalent in autistic people and people with ADHD [1, 2], and that neurodivergent people benefit less from current eating disorder treatment approaches [3-6], research into the overlap of autism/ADHD and disordered eating is in its infancy. To provide better care we need to understand why neurodivergent people are at increased likelihood of developing disordered eating and how best to support those in need.
However, within this broad aim, there are hundreds of research questions you could ask! Therefore, we wanted to ask people with lived experience where they felt researchers should focus their efforts.
We followed the principles outlined by the James Lind Alliance, a non-profit initiative designed to bring relevant groups together to identify and prioritise issues relevant to health research funders. First, we conducted a broad online survey, asking autistic people and people with ADHD who have lived experience of disordered eating to tell us the topics they felt were most important for researchers to focus on. We chose to ask for people with lived experience of disordered eating to take part, rather than people who had a diagnosed eating disorder, because we were aware that there are many reasons that may determine who receives an eating disorder diagnosis beyond clinical need (e.g., local service provision, healthcare biases). 71 people completed our survey and told us what they felt was important. Two researchers from our team (myself and a research assistant) reviewed all the responses and picked up the topics that seemed to come up frequently. These were reviewed and agreed by the whole research team before we continued.
Next, we held an in-depth workshop. 14 people with lived experience attended this online workshop, where we thought about the 15 topics in lots of different ways. For example, we thought about different groups in society that this type of research would be relevant to. These groups included neurodivergent people with lived experience, carers and loved ones, health care providers, policy makers and researchers. We then broke into small groups and each group of participants thought about which topics could most benefit a specific societal group. We also discussed how different topics had the potential to change attitudes, behaviour and wellbeing. After a few rounds of these thought activities, we asked each group to vote on what they thought were the most important topics overall. We then brought together all these ratings to find the top 10 research priorities, ranked in order of importance.
Why does neurodivergent involvement matter, and how has it shaped your work?
The focus of research in emerging fields should be driven by the priorities of people with relevant lived experience. Therefore, neurodivergent involvement was key to this priority setting exercise and the opinions of people with lived experience strongly shaped our findings. These types of collaborative projects are key to building trust between researchers and neurodivergent communities, which is needed to ensure research is relevant and respectful. We hope other researchers in the field find these priorities a useful guide to shape their future projects.
How might your findings be useful and shape services?
Many of the most prioritised topics were those which sought to answer clinically relevant questions related to the overlap of autism, ADHD and disordered eating. Participants wanted researchers to focus on topics such as ‘How can treatment for disordered eating be improved for neurodivergent individuals?’, ‘What is the effect of neurodiversity training and knowledge in clinical services for eating disorders?’ and ‘Would better information and education reduce risk for neurodivergent people?’. Building an evidence base, grounded in these types of research questions, is what is needed to improve clinical services for neurodivergent people who experience disordered eating. Thinking more broadly, even those research topics which were not directly related to clinical practice, for example ‘Is there a link between sensory sensitivities and disordered eating?’ have the potential to shape service provision. By better understanding underlying mechanisms, health care providers can offer more appropriate and better tailored support to neurodivergent people in need.
Can you share some recommendations for resources or literature on the topic?
In the UK, there has been some progress on thinking about the overlap between autism and eating disorders in clinical settings – most notably the PEACE pathway (https://www.peacepathway.org/).
There is also a new group of researchers who are doing research specifically focused on autism and eating disorders known as the Eating Disorder and Autism Collaborative (EDAC). They have some great research summaries on their website (https://www.edacresearch.co.uk/), including videos with researchers and easy to read summaries.
There has been less progress in the field of eating disorders and ADHD, but hopefully this will change in the future and more resources will be available.
References
1. Nickel, K., et al., Systematic Review: Overlap Between Eating, Autism Spectrum, and Attention-Deficit/Hyperactivity Disorder. Frontiers in Psychiatry, 2019. 10.
2. Nazar, B.P., et al., The risk of eating disorders comorbid with attention-deficit/hyperactivity disorder: A systematic review and meta-analysis. International Journal of Eating Disorders, 2016. 49(12): p. 1045-1057.
3. Nielsen, S., et al., Effects of autism on 30-year outcome of anorexia nervosa. Journal of Eating Disorders, 2022. 10(1): p. 4.
4. Nielsen, S., et al., Effects of autism spectrum disorders on outcome in teenage-onset anorexia nervosa evaluated by the Morgan-Russell outcome assessment schedule: a controlled community-based study. Molecular Autism, 2015. 6(1): p. 14.
5. Babb, C., et al., A comparison of the eating disorder service experiences of autistic and non-autistic women in the UK. European Eating Disorders Review, 2022. 30(5): p. 616-627.
6. Svedlund, N.E., et al., Are treatment results for eating disorders affected by ADHD symptoms? A one-year follow-up of adult females. European Eating Disorders Review, 2018. 26(4): p. 337-345.
