Researchers define what the neurodivergent community wants from eating disorder research

A new study by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and Birkbeck, University of London, worked with members of the neurodivergent community to find out what they think should be prioritized in future research into eating disorders.

“The intersection of eating disorders, autism, and ADHD: future research priorities identified by adults with lived experience” was published in The Lancet Psychiatry.

The researchers hope that a more collaborative approach to studies in this area can lead to a better understanding of why autistic people and people with ADHD are more prone to eating disorders and how best to help those who need support.

A total of 71 neurodivergent (autistic and/or ADHD) adults suffering from eating disorders responded to an online survey asking for their suggestions and preferences for future research in this area.

A list of recurring themes from this survey was then discussed in an in-depth workshop with another group of 14 neurodiverse adults who also suffered from eating disorders. The priorities were considered from different perspectives and in terms of their potential for impact. Based on this workshop, the researchers compiled a list of the top ten research priorities, sorted by importance:

1. How can the treatment of eating disorders in neurodivergent individuals be improved?
2. What other factors may increase the risk of eating disorders in neurodiverse people?
3. What effect does neurodiversity training and knowledge have on the clinical care of eating disorders?
4. Which eating disorder treatment interventions are absolutely not helpful for neurodivergent individuals?
5. Is there a difference between the underlying causes of eating disorders in neurodivergent people and in neurotypical people?
6. Would better information and education reduce the risk for neurodivergent people?
7. Is there a connection between ADHD traits (e.g. impulsivity) and eating disorders?
8. How do difficulties in executive functions affect eating behavior and increase the risk of an eating disorder?
9. Is there a connection between sensory sensitivity and eating disorders?
10. Do different ways of thinking (e.g. black and white thinking) contribute to eating disorders?

The researchers sorted the list into two overarching themes, each with two subgroups:

Priority 1: Improving clinical outcomes

Participants agreed that research to improve services is the most urgent priority.

Subtopic 1 – Improving clinical services

Clinical services for eating disorders are often not designed to meet the needs of neurodivergent individuals, which can compromise the effectiveness of treatment and support.

Although some progress has been made in this area following the development of the PEACE pathway, there are currently no agreed clinical guidelines and little research has been conducted on the effectiveness of adapted treatments in autistic populations.

Therefore, many of the highest priorities revolved around how services could be improved and how potential harm from inappropriate treatments could be identified and minimised.

Subtopic 2 – Improving psychoeducation and preventive medicine

Another focus was the availability of educational resources for neurodiverse people. While participants acknowledged the need to improve outcomes, they also expressed that preventative measures and information to help people before developing a clinical diagnosis could also be helpful and would empower neurodiverse people to understand their own eating behaviours.

Priority 2: Identification of causal mechanisms

A second focus that became apparent during the project was the participants’ desire to understand the causal mechanisms linking neurodivergence and eating disorders.

The researchers have divided this priority into two further subtopics:

Subtopic 1: Identification of risk factors

Historically, autistic women with anorexia were thought to be motivated by weight and body shape, based on explanatory models of neurotypical people. However, this may not be true for neurodivergent people, so many mechanisms that we believe (and therefore target in treatment) lead to eating disorders may not be relevant for neurodivergent people.

One potential factor that is common in neurodivergent people is that eating disorders may be a response to the stress of living as a neurodivergent person in a neurotypical world.

The researchers suggested that one research approach might be to examine the association between stress and eating disorders in both neurodivergent and neurotypical populations to inform the development of prevention and intervention strategies.

Subtopic 2: The role of neurocognitive profiles in autism and ADHD

Participants asked several questions based on the assumption that the cognitive profiles associated with autism and ADHD might increase a person’s vulnerability to eating disorders.

Current evidence suggests that there is a link between sensory sensitivity and restrictive eating behavior, as well as between executive functions and eating disorders. However, whether these factors are responsible for the increased risk of eating disorders in autistic and ADHD patients is not yet clear.

Dr Virginia Carter Leno, lead author of the study, said: “The occurrence of eating disorders is associated with a range of negative health outcomes and it is important that services are able to meet the needs of all service users who require treatment.”

“Eating disorder services need to recognise that the needs of neurodiverse service users may differ from those of neurotypical people. And more research is needed to better understand the causes of eating disorders in neurodiverse people.

“In our study, we worked with a range of people with first-hand experience to find out what they believe should be the highest priority for future research in this area. We hope that this list will serve as a resource to ensure that future research in this area is shaped by the experiences and priorities of those with first-hand experience.”