Neurodiversity and Eating Disorders w/ the Chair of EDNA (Part 2)
Join Livia and Laurence for part 2 of their chat on the relationship between neurodivergence and eating disorders. If you have not yet listened to or read part 1, you can find it here.
Who is Laurence?
Laurence (pronouns she/they) is the Chair and Research Lead of Eating Disorders Neurodiversity Australia (EDNA). They are a proudly neurodivergent (AuDHD) and queer neurodiversity and mental health advocate that have lived experience of a restrictive eating disorder (anorexia/atypical anorexia). Laurence completed a Bachelor of Psychological Science and a Master of Philosophy in Gender Studies. She is now undertaking a PhD which investigates eating disorders in the context of neurodivergence.
In a typical autistic manner, Laurence wrote a script for our podcast interview together. Read part 1 here and find part 2 below!
Executive functioning in neurodivergence and eating disorders
Given the overlap with ADHD (lots of ADHDers are also autistic and vice versa) and autism, executive functioning is also a big factor to take into consideration regarding eating disorders in the context of neurodivergence. Executive functioning difficulties relate to several cognitive aspects of daily living, such as short-term memory, motivation and procrastination, task initiation paralysis (being unable to start a task and staying in a ‘freeze state’). Going grocery shopping, remembering what to buy, preparing meals (cooking), choosing what to eat, and so forth, all rely on executive functioning and can be impacted.
What is alexithymia and how does it relate to autism and eating disorders?
Alexithymia refers to difficulties appraising, integrating, and making sense of our feelings and emotions. You may perceive that you’re feeling a certain way, but you can’t really be sure of what you feel nor why you feel that way. You may also struggle to make sense of how you feel and put it into words to then share with others. Most often, when people ask me how I feel or how I am, I am not sure what to say other than “I am not sure” or “I don’t know” – but I realise that such responses would not be understood by most neurotypicals or might even be perceived as inappropriate, so I just go with the usual and boring “I am ok, thanks” instead.
Sometimes, alexithymia may mean someone is struggling to differentiate between emotions and sensory input, such as understanding the difference between being sad, angry, and hungry, or the difference between being annoyed and thirsty. This can lead to binge eating, or what some would refer to as ‘emotional eating’. Alexithymia is therefore strongly dependent on both interoception and exteroception.
Interoception and exteroception in autism and eating disorders
Exteroception is essentially any sensory modality that, contrary to interoception, relates to external sensory stimuli, like hearing, smelling, vision, touch, and taste. These sensory modalities can influence food variety due to sensory aversions (taste, texture, smells). However, exteroception can also influence binge eating for those who are not hypersensitive, but hyposensitive – craving certain tastes and/or textures to compensate for feelings associated with sensory understimulation. Every individual has a unique sensory profile which will have an effect on feeding behaviours and preferences.
Autistic traits that were considered “ED behaviors"
- Separating foods on the plate so that different tastes and textures do not mix because it would bring on a high degree of uncertainty which is anxiety provoking.
- Eating alone and not talking while eating due to sensory overload from eating in groups (noises from others chewing and using cutlery, noises from others talking between each other, smells from others foods) and the extreme discomfort from being expected to engage in small talk and therefore mask (which is exhausting) – at the facility I was being treated at, they would put the radio on in the background during group meal times and this made the whole experience exceptionally distressing and not at all healing.
- One of the nurses a facility I was treated at forbid me to wear my noise cancelling headphones during mealtimes even though I explained to her that I was wearing them for the sake of reducing the sensory overload related to noise. I also tried to tell her that not allowing me to wear my headphones to mitigate my sensory-related distress (which constitutes a reasonable adjustment) is a form of disability discrimination which is a violation of the stipulations set forth in the Disability Discrimination Act of 1992 in Australia. I was told that allowing me to wear my headphones during mealtimes was a breach of their internal treatment protocols – the problem is, internal protocols are not above disability discrimination legislation. It’s also funny because autistic people are always told that they lack cognitive flexibility and tolerance for change, yet here we are with a nurse that is so cognitively rigid and lacking self-reflection that she can’t even realise when she’s violating disability discrimination legislation for the sake of following arbitrary protocols. I expressed this concern to another nurse, but, to my knowledge, no corrective action was taken to prevent this form of disability discrimination to re-occur.
- Eating whilst watching stuff on my ipad or phone was not permitted either --- distraction is very important for me to enjoy and relax during mealtimes but both facilities (one in Adelaide in the other in Sydney) where I have been treated had a policy in place where they took patients’ electronic devices away during mealtimes (including Ipads and Iphones).
- My need for stimming was framed as symptoms of the eating disorder – it was perceived as a compulsive need to ‘burn calories’ rather than self-regulation
- I am also dyspraxic, which means I am often clumsy and my coordination as well as flexibility are poor – yet I was coerced into attending yoga classes in the facility I was treated at. My reluctance and distress towards those yoga classes were wrongly framed as eating disorder behaviours and treatment non-compliance.
- My need to be alone and not engage in social interactions was framed as pathological isolation and withdrawal. Being left alone to think, engage in creative writing, reading, or just thinking, is important to me. Too much social interactions can tear me down and burn me out big time – which is totally counter-productive to eating disorder recovery.
- My need to eat the same foods for prolonged periods of time (predictability to prevent anxiety) was deemed a symptom of my eating disorder.
Gaslighting during eating disorder treatment
On a side note, once a nurse who came to assist while I was having a severe hypoglycemic episode (low blood sugar level) said to his colleagues, referring to me, “why do we even care about someone like this”. Several other healthcare professionals were there and witnessed this – one of whom was shocked and decided to write it into my patient’s notes to make sure there was a formal record of the incident. I was then told by another nurse, who looked after me later on and had had a look at the notes, that I should file a complaint with the Australian Health Practitioner Regulation Agency. She went above and beyond in explaining the complaint process to me. However, the Australian Health Practitioner Regulation Agency (AHPRA) found that the nurse’s behaviour was within acceptable standards of care. I guess, the cherry on top of the cake is that when I expressed the fact that the nurse’s behaviour had caused me a lot of distress and felt traumatic, and rightly so (as it logically impacted how safe I was being treated there), he told me that I was being dramatic.
In addition, while being treated at a facility in Sydney, I realised that many clinicians kept referring to me as “having autism” or “having ASD” both verbally and on my written patient’s records despite me repeatedly saying and explaining that person-first language was offensive to me (and also to a majority of autistic people), and that there had been many community- as well as academic-based articles published that explained this.
There is such a huge lack of accountability in the mental health and broader medical fields when it comes to discrimination against neurodivergent people, including autistic individuals. The harms that neuronormative narratives and practices cause, even unintentionally, should be acknowledged and addressed but are oftentimes ignored and dismissed. Many healthcare professionals will become overly defensive and patronising at the slightest shadow of criticism, even if valid. Sometimes it feels like walking on eggshells because you’re scared of being labelled as the “difficult and arrogant patient” for self-advocating and asking to have your support needs met, and subsequently neglected and/or denied care at all on that basis. You’ll be turned away and told you’re “too complex” and that there is no treatment option for you because of that.
Laurence's words of wisdom for neurodivergent individuals with eating disorders
There is nothing inherently wrong with you. You’re not broken. Your struggles are valid and you deserve your support needs to be met. Don’t be afraid to speak up and self-advocate. Take space and be loud even when told that you’re “too much”. You’re not lazy for attending to your wellbeing. You are worth it the way you are, don’t try to be someone you’re not to please an ableist and neuronormative society.