Clients who fall through the cracks - Neurodiversity and eating disorders

Some of our clients with eating disorders seem to be more “harmed” than helped by the traditional approaches. We do exactly the same in terms of treatment, maybe even try to adapt a bit, yet they seem to be more and more distressed, avoidant and symptomatic. The reasons why people don’t respond well to evidence- based treatments may vary: trauma, iatrogenic trauma, neurodiversity or comorbidities.

In this article we will focus on neurodiversity and eating disorders, with the acknowledgement that this population have usually experienced trauma and iatrogenic trauma and can also have other comorbid disorders.

The Importance of Language

Words such as ‘neurodiversity’, ‘neurodivergence’ are often misused or used interchangeably. So, let’s clarify.

Neurodiversity refers to the diversity of human minds and the variations in neurocognitive functioning that naturally exists in our species. It is a term coined by Judy Singer in the 1990s and it’s the ‘idea that beautifully captures the plain fact that autism, ADHD, dyspraxia, dyslexia and more – are part of the endlessly different ways that human minds are wired’.

Neurodivergence, a term coined by Kassiane Asasumasu (formerly Kassiane Sibley), on the other hand refers to individuals who have a neurocognitive profile that diverges from the majority (“norm”). Neurodivergence is an umbrella term encompassing autism, attention deficit hyperactivity disorder (ADHD), Tourette’s syndrome, giftedness, dyslexia, dyscalculia, dyspraxia, and intellectual disability.

An individual is neurodivergent, but a group can be neurodiverse. Diversity is a property of groups. It requires variability between things.

Neurodiversity, like biodiversity, recognizes that variation within a species is a valuable and natural phenomenon. Just as different species contribute to the richness and resilience of an ecosystem, diverse ways of thinking and being enrich human society and therefore should be accepted and accommodated.

Historically any “divergence” was perceived as a deficit and a problem. Neuronormativity presented the neurotypical as superior and “normal”, and atypical as less valuable and problematic. The neurodiversity paradigm, so welcome here, rejects the assumption of there being a singular ‘normal’ neurocognitive profile and opposes the idea neurodivergence requires “fixing” or “curing”.

The Harsh Reality of current treatment and its impact on neurodiverse people

That is in theory, but in practice we often still cultivate neuronormativity in the health system, treatment centres and evidence-based approaches.

And that is a problem and matters so much, because research highlights high co-occurrence of eating disorders and neurodiversity. Unfortunately, we still lack research in terms of the mechanisms underlying links between neurodivergence and eating disorders, and also lack research explaining why neurodivergent individuals experience so much harm and much poorer treatment outcomes compared to neurotypical people.

Many neurodivergent individuals have already experienced oppression and discrimination in education, rejection or shaming in family of origin, and in other social situations. Sadly, when they come to us (health and mental health professionals) for help, they experience further oppression and harm.

Many of our clients carry iatrogenic trauma and have learned not to ask for help and avoid services. When people are shamed and rejected, they eventually internalize those messages. Therefore, when they come to us, their self-esteem is low. And so are the skills to self-regulate and cope with stress. They are either burned out by constant masking and camouflaging - or exhausted by trying to explain their needs and being seen as problematic. No wonder there is such a high prevalence of anxiety, self-harm behaviours and suicide ideation within this population.

We, as healthcare professionals need to do more and we need to do better.

Are professionals in your service:

• Able to screen for neurodivergence?
• Trained to appropriately understand neurodivergence?
• Able to create an environment that is not overwhelming for neurodiverse people?
• Able to offer accommodations that are appropriate?
• Able to work with trauma and harm that has already been done (able to treat trauma, not just eating disorders)
• Able to view some of the symptoms, like extreme avoidance and self-harm as consequences of the harm done?
• Able to not further blame and shame people for having difficulty attending, adhering to the program etc?

Eating disorders are very complex and difficult to treat.

And eating disorder professionals are usually very passionate and committed and eager to learn.

In this case, we have to learn so much and stay up to date, as research is constantly emerging and, hopefully, we will learn more and more. We also need to listen to the voices of people with lived experience and their family members.

If you’d like to learn more, come join us!

Join us for our 2 day masterclass in Neurodiversity and Eating Disorders so that you are equipped and empowered to work with and effectively support your neurodiverse clients. (insert booking link here).

References:

1. Harris, J. (2023). The mother of neurodiversity: how Judy Singer changed the world [online] The Guardian. Available at: https://www.theguardian.com/world/2023/jul/05/the-mother-of-neurodiversity-how-judy-singer-changed-the-world
2. Walker, N. (2014). NEURODIVERSITY Some Basic Terms and Definitions [online] Truth Sayers. Available at: https://static1.squarespace.com/static/618309342c2ee8376ef9f36e/t/6387e9ca81597b3880147ba0/1669851598123/NickWalker_NEURODIVERSITY-SOME-BASIC-TERMS-AND-DEFINITIONS.pdf
3. Fletcher-Watson, S. (2020 - edited 2022). Neurodiverse or Neurodivergent? It’s more than just grammar [online] University of Edinburgh. Available at: https://dart.ed.ac.uk/neurodiverse-or-neurodivergent/
4. Laurence Cobbaert, Anna Rose Millichamp, Rosiel Elwyn, Scout Silverstein, Kai Schweizer, Elysia Thomas & Jane Miskovic-Wheatley(2024).Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review. Journal of Eating Disorders volume 12, Article number: 187