Why eating disorder care must be geared to neurodivergent patients

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Sydney, Jun 10 (360info) A third of people with an eating disorder are neurodivergent, yet traditional eating disorder research and treatments haven't factored this into the equation.

About one-third of people with an eating disorder are neurodivergent. And while traditional eating disorder treatments haven't factored this into the equation, there's a push for that to change.

In recent years, as public awareness of autism and ADHD has grown, the links between neurodivergence and eating disorders have progressively attracted researchers' and clinicians' attention.

As many academics and lived experience advocates have argued, it's time for eating disorder clinicians to meet the individual and intersectional needs of their neurodivergent clients.

Eating disorder links for autism and ADHD are clear Autistic people and those with ADHD (also called ADHDers) are more likely than neurotypicals (people whose neurocognitive functioning aligns with the majority) to develop an eating disorder.

About one in three people with anorexia nervosa are also autistic, as are one in every two people with an avoidant/restrictive food intake disorder.

Similarly, ADHDers are four times more likely to have anorexia nervosa or a binge eating disorder, and over five times more likely to develop bulimia nervosa, compared to people without ADHD.

Whilst combined autism and ADHD (also called AuDHD) is frequently observed, there is no data specifically investigating this overlap in relation to eating disorders in adults. Additionally, although associations between eating disorders and intellectual disability, giftedness, and Tourette's syndrome have emerged, further investigations are needed.

Beyond stereotypes: How autism and ADHD impact eating Neurodivergent people experience the world differently to neurotypicals — including in relation to eating and body image.

For example, autistic people with a restrictive eating disorder are less likely than non-autistic individuals to report that the main driver of their restriction is the desire to control their weight or body shape.

Instead, key contributing factors for autistic folks include differences in sensory processing, alexithymia (difficulty in verbally expressing feelings), minority stress (high levels of stress associated with being in a minority group), executive functioning, and the use of food restriction as a form of 'masking' (also called 'camouflaging') to increase social acceptance.

Autistic people often prefer to eat the same specific foods (sometimes known as 'samefoods') because the selected foods predictably meet their sensory needs, help with self-regulation, and can support an adequate energy intake. Anecdotal lived experience accounts of ADHD suggest that food-related hyperfixation is a relevant phenomenon amongst ADHDers, too.

Autistic individuals and ADHDers may find remembering to eat challenging due to differences in sensory processing and cognitive processes. Moreover, executive functioning differences may lead to difficulties choosing what to eat, sourcing ingredients, and preparing meals.

Some autistic people may also find the task of eating boring and not enjoyable. What's more, some prefer eating alone rather than eating socially to avoid sensory overwhelm such as in relation to misophonia (where certain sounds trigger strong responses) and/or other hypersensitivities.

Where traditional treatments fall short Given these different underlying factors, it isn't surprising that traditional eating disorder treatments, specifically cognitive behavioural therapy, dietetics, and inpatient care, have been found to be significantly less effective and acceptable.

For example, cognitive behavioural therapy, the dominant approach to treating most eating disorders, may be problematic for neurodivergent individuals.

"Focusing on the thought surrounding their sensory sensitivities and aversion to food and then labelling this thought as distorted … would invalidate this individual's lived experience," US-based clinician with lived experience Morgan Blair has written.

On the whole, the 'evidence-based' psycho-behavioural treatments often held up as the 'gold standard' only succeed at supporting less than half of people with an eating disorder into long-term recovery.

The problem of psychological interventions not meeting the needs of neurodivergent people is not limited to the field of eating disorders. For example, a recent review found there are no mental health interventions that can claim to be neurodiversity-affirming.

Care that's not just informed, but intersectional and affirming Encouragingly, there has been increased awareness of the need for eating disorder services to improve their ability to meet the unique needs of autistic individuals, such as the Peace Pathway in the UK.

Unfortunately, similar initiatives have not yet been realised in relation to the intersections of ADHD or other forms of neurodivergence and eating disorders.

As we argued in our recent technical report, Eating Disorders and Neurodivergence: A Stepped Care Approach, eating disorder stakeholders need to radically rethink all aspects of eating disorder research and care if they are to meet the needs of neurodivergent people.

At a bare minimum, clinicians should know about the links between eating disorders and autism, ADHD, or other forms of neurodivergence.

It would be helpful for them to have an understanding of how domains such as sensory processing, social communication, processing emotions, executive functioning, cognitive processes, gender identity, and masking or social camouflaging can impact the ways eating and body image are experienced differently by neurodivergent people.

But best practice for neurodivergent folks doesn't stop there.

It also means providing care that is neurodiversity-affirming — viewing neurodiversity as a valuable form of diversity and rejecting the idea that there is a singular normal neurocognitive style. This kind of approach challenges the traditional dehumanising pathologising of neurodivergence and instead focuses on holistically meeting the individual, and self-determined, human rights and unique support needs of neurodivergent people.

Moreover, neurodiversity-affirming eating disorder care means moving beyond the indiscriminate use of compliance- and exposure-based psycho-behavioural approaches. Invalidation of sensory needs, for example, can be distressing and experienced as a form of gaslighting. Likewise, coercing or forcing an autistic person to eat aversive foods can result in food-related trauma.

Furthermore, accusing an ADHDer or an autistic person of wilful non-compliance and/or attention-seeking for executive functioning challenges (for example, forgetfulness or 'demand avoidance', meaning a persistent and marked resistance to demands) that are outside of their control can be deeply stigmatising and traumatic.

In practice, delivering authentically affirming care requires eating disorder clinicians first engage in deep self-reflection to challenge biases and neuronormative beliefs. It then demands that eating disorder stakeholders seek out, respect, and elevate the voices, concerns, and priorities of neurodivergent people — stepping forward with humility and courage to collaborate with lived experience experts on improving eating disorder care for all. (360info.org) GSP

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