Neurodiversity and Eating Disorders
posted 27th February 2023
Neurodiversity and Eating Disorders
In this Eating Disorder Awareness Week, I thought I would write a few words on when neurodiversity intersects with an eating disorder. I know that I am not going to have the space to explore this huge area in this short blog, but I do hope to come back to this topic with more specific areas covered in future blogs. (But I obviously want to caveat that with - I'm neurodiverse so ... don't time me!)
What constitutes an Eating Disorder?
I have listed below the diagnosable Eating Disorders that we are currently aware of, within the UK at least, at the moment.
(For what constitutes neurodiversity, I will be sharing a blog with the definitions soon! And by soon, I mean I actually meant to do this ages ago but ... got distracted ... wondered off ... you know how it goes!)
Eating Disorders:
- Anorexia Nervosa
- ARFID (Avoidant / Restrictive Food Intake Disorder)
- Bulimia Nervosa
- Binge Eating Disorder
- Orthorexia
- OSFED (Other Specified Feeding or Eating Disorder)
- PICA (where someone eats non-food substances)
- Rumination Disorder (an illness that involved repetitive & habitual bringing up of food)
There may be some that you have never heard of before and some you are more familiar with.
I would add that someone can have disordered eating or a disordered relationship with food without it being a diagnosable condition. I could lament here about how the diagnostic criteria for anorexia still has a 'body weight below expected' or BMI score within it. A condition of the mind is still determined by the result in the body within the medical profession. In my professional view, as someone who has worked on an Eating Disorder Unit and with counselling clients dealing with eating disorders in Private Practice, you do not have to have a diagnosable condition to be dealing with the damaging and difficult effects of this disordered relationship. Please don't wait for it to be 'diagnosable' before you seek support - you are worthy of that right now. If you 'eat your feelings' or avoid social situations that will mean you feel expected to eat 'unsafe food', you are dealing with something you deserve help to navigate.
Is it relevant to talk about ND & ED in the same conversation?
Well arguably it would be important even if it was just one person experiencing, but is that the therapist in me talking? No. I think it's the human!
However, what we know is that up to 37% of those diagnosed with Anorexia also have Autism. What, I can only assume, skews this percentage is the vast number of undiagnosed neurodivergent people that exist in the world, and one would infer also exists with the other 63% of those with Anorexia - so what is the true number of those with Anorexia and Autism? This is also only a section of those with an eating disorder and also only a section of those with neurodiversity. In my view we are only seeing the tip of this iceberg due to the under reporting and under diagnosis of both groups. After a group of adults with an eating disorder were screened for ADHD, 31%* scored above the screening cut off. Demonstrating that there may strong evidence that a high proportion of people with eating disorders also have neurodivergence.
Risk factors that may mean people are more likely to develop eating disorders and are also more frequently found within neurodivergent people:
- Gastrointestinal issues
- Immune related disorders (inc. Ehlers-Danlos Syndrome; Dysautonomia - such as POTS; IBS; Polycystic Ovarian Syndrome; Dermatitis; Asthma; and Allergies)
- Members of the LGBTQIA+ community
- Mental Health Issues (inc. depression; anxiety & suicide thoughts)
- Burnout
It is therefore essential that we consider eating disorders with the context of the neurodivergent lens. What will work for and best support neurotypicals may not be ideal for neurodivergent individuals.
Why does it matter?
As with all things, nuance is King, or Queen if you prefer. The way you approach something needs to change depending on the person's individual set of characteristics and needs, neurodiversity is part of this. More than this I believe that when people truly understand themselves, their thoughts, feelings and behaviour, they have so much more power to influence them. And beyond this, the understanding of why you think or feel or behave the way you do can reassuring and affirming. Perhaps you are then able to approach yourself with gentle understanding or meet the need you didn't know you had.
How might a neurodivergent eating disorder look?
In short, an onlooker might not notice any difference in a neurotypical person or a neurodivergent person dealing with an eating disorder but that doesn't mean that there aren't any differences. Without going into detail about all of the eating disorders as listed above I wanted to offer a few pointers on how eating disorders could be different in neurodivergent people:
- Interoception can affect hunger and fullness cues, meaning that a client is not eating due to a lack of awareness of being hungry or not stopping due this lack of awareness. This can be an added layer placed on someone's recovery where trust is often weaponised.
- Sensory issues can cause certain food to be avoided or using food to stim or as a way to focus on a task (eating while studying for instance).
- I would dare to say that emotional regulation causes issues for all people dealing with eating disorders but perhaps the way that emotional regulation (or more aptly dysregulation) can show up for neurodivergent people is different.
- Social engagement can be a challenge for some neurodivergent people meaning that their ability to engage in social meals is impacted. This would also impact inpatient treatment plans and the like where there is an enforced social aspect (along with significant environmental changes).
Things that may help:
- Work with professionals that are neurodivergent affirming. I cannot emphasise the importance of this enough. But also, don't settle for the neurodivergent affirming professional that makes you feel worse about yourself. Therapy is hard yes, and it can and arguably should be difficult at times, but you should always feel held and supported and understood - and at least like you can raise it with them if not. I know that it may not be easy if you are not able to choose your own therapist or dietician for instance.
- Teasing out which bits are you and which bits are the eating disorder. Which bits do you need to change to feel 'well' and which bits are okay to stay? You don't have to change something because other people don't think it's 'normal'.
- Understanding more about neurodiversity and how it may show up for you. So many people are masking unconsciously that there is a period of awareness and adjustment that happens in my experience. People may ask you what you need but honestly you may not know because you've never been given the opportunity to explore.
- Know that you are not alone. I appreciate that in our darkest days this can be little comfort, but there might be a moment when you need to know that it isn't just you even if the world makes you feel that way.
- Give yourself some grace. You are not meant to do everything perfectly, you are allowed to try and fail, and try again.
*Figures taken from research papers and studies