Neurodiversity and Eating Disorders w/ the Chair of EDNA (Part 1)

 How are eating disorders and neurodivergence linked? One of the best ways to understand this common connection is through stories of lived experience. On the podcast today, Livia interviews Laurence, the Chair and Research Lead of Eating Disorders Neurodiversity Australia (EDNA).

Laurence (pronouns she/they) is a proudly neurodivergent (AuDHD) and queer neurodiversity and mental health advocate. They 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 below, and stay tuned for part 2 of our insightful chat!

Who are you and what’s your story?

My name is Laurence. I am originally from Brussels, the capital city of Belgium. My dad is Belgian and my mother is from South Africa. My native language is French – which is the underlying reason for my accent. However, I went to an international school in Brussels where I got to learn English from the age of 6. I have been traveling around the world for a while (meaning over a decade, pretty much ever since I graduated high school) and have changed jobs and careers more times than I can recall (hospitality industry, cruise ships, aviation), but I have now been living in Australia for the past 7 years (September 2016) where I have found my calling in doing academic research. I completed a Bachelor of Psychological Science and a Master of Philosophy in Gender Studies and I am now doing a PhD investigating eating disorders in the context of neurodivergence.

What is your experience with neurodivergence?

As a child, I was introverted but if you engaged with me on topics that I was passionate about, I would be extremely talkative and super excited about sharing what I knew and learning more from the person I was talking with. I was, and still am, voraciously curious. I’d be relentlessly asking questions about anything and everything: Why? How? What about? What if?

I would have extreme reactions in relation to overwhelming sounds and noisy environments. This could mean screaming, biting my arms until I bled, banging my head against the walls, punching myself in the face, or just running away (fight or flight sort of reaction). I am also very sensitive to other modalities, especially smells and lights, but hearing is probably the most heightened sense for me. I also hate being touched or being too close to other people – I like to have my own bubble/safe space. This is particularly challenging to cope with when using public transportation as, when it’s busy hours, people invade my safe space, and it makes me extremely anxious. That’s why I avoid using public transport during rush hours.
I experienced struggles with speech early on, especially in overwhelming and new or unfamiliar environments. I could go completely mute in some cases.

I was the sort of child that’d sit at the back of the classroom next to the window, and I’d be quietly daydreaming the whole lesson. I’d forget to do my homework a lot and study for my exams at the very last minute, while still getting passing grades. I excelled beyond teachers’ expectations in topics I was deeply interested in but mostly failed or barely passed topics I was not keen about. I even called some teachers out when they made mistakes on a detail about one of my favourite topics, which I had read a ton of books and articles about of course. I guess this is what is referred to as the neurodivergent “spiky profile”.

I have also always needed alone time a lot. Actually, I like spending most of my time alone. And this does not mean that I don’t love family members or close friends nor is it a reflection of how much they mean to me. It’s just who I am. I think people often confuse loneliness with aloneness. Loneliness is when you are distressed by solitude, while aloneness, to me, is the sense of peace I experience from solitude. I can sometimes feel utterly lonely while being surrounded by people. Loneliness isn’t about being around people, it’s about feeling belongingness and connection with those people.

I have always been very sensitive to other people’s emotions and pain as well, it’s like I can feel other people’s feelings within my own being, inside my body – but not on a cognitive level. I have also always been very reactive to unfairness and injustice, which I’d call out even if it got me in trouble.

Funnily enough, when I went on a date in my early twenties, the guy I met told me he was autistic (Asperger’s at the time), and at some point he told me something along the lines of “I am so glad that I met someone like me” and I asked him what he met, to which he responded “you’re autistic/Asperger’s too, it’s obvious”. At the time, I had very limited knowledge about autism, and what I knew was mostly the sort of ableist and stigmatising crap that I challenge today. Because of that, I did not really pay attention to what he said and just buried the idea I might be autistic.

In my early thirties (+/- 2019), I came across content about autism and neurodiversity through my own research about eating disorders, and I started digging deeper. That’s when I realised that I was autistic. It was life changing, in terms of self-awareness and being more compassionate towards myself, especially with regards to the challenges I face as part of being disabled. Of course, I looked back at my entire life through this newly acquired lens, and everything made so much sense. For example, as a child I’d lock myself in my bedroom with food in order to eat alone, and I would get disciplined for doing that. I also struggled immensely with eating at school due to the extremely noisy, crowded, and bright environment; it felt like torture, and I would often skip lunch because I could not cope with the sensory overload.

What is your experience with eating disorders?

I have always experienced difficulties with eating, and I think that for me, the main factors are sensory processing (interoception, exteroception, alexithymia), masking, and executive functioning. When I engage in an activity I am deeply interested in, I easily forget to eat for prolonged periods of time – and this can lead to binge eating later on, followed by guilt and shame, then restriction follows; this can become a vicious cycle. So I have to be careful about setting alarms on my phone to remind me to eat.

I struggle with anxiety (as many autistic people do), and oftentimes this affects my appetite – it can go both ways unpredictably, either binge eating or restricting. Sometimes I am finding it impossible to know whether I am in a state of emotional intensity (sadness, anger, happiness) or if I am hungry. I don’t usually feel when I am full, so I can easily binge eat unintentionally. Sometimes, I eat to the point of being in extreme abdominal pain, but when I realise that I have eaten more than my stomach can cope with, it’s too late and I have to deal with the following dreadful few hours of extreme pain and nausea. This can be really scary and I think it has contributed to me feeling unsafe around eating because I did not understand back then why this was happening to me. So I think part of what contributed to my eating disorder is because of that association between feeling unsafe and eating.

As I mentioned earlier, my heightened exteroceptive awareness has also led me to experience some issues with my eating. For example, being extremely sensitive to sounds and noises, eating at school was very distressing and I’d skip lunch because of it, which resulted in me bingeing when I got home in the evening. But the bingeing made me feel guilty and shameful, so I would sometimes restrict afterwards for a short time, and this progressively became a cycle, with restriction becoming more and more pronounced over the years. I do have taste and texture aversions and I do prefer to eat the same things for prolonged periods of time, but I do not believe that they’re as pronounced as to have been contributing to my eating disorder though.

I also think that masking played a substantial role in the development of my eating disorder. I have discussed with many other autistic people who have lived experience of an eating disorder and, they too, felt like masking contributed to their eating disorder. I always felt different, like an alien from another planet, and it was hard for me to connect with others. I came to internalised that I was broken and that something was inherently wrong with me. Most social interactions made me feel depleted and inadequate, I would ruminate over every single word I had said after a social encounter and beat myself over what I perceived as “being weird”. I never felt like I did fit in, no matter how hard I tried. I was bullied at school for being a weirdo, a know-it-all, a clumsy daydreamer, a loner.

So I think that, with the influence of diet culture’s pervasiveness which is ingrained in all layers of our society, I thought that maybe if I was thinner my social awkwardness would not matter and I would be accepted. Also, masking, because it relates to erasing your own authentic identity as an autistic person, robs you somehow of your sense of self, and you start, over the years, being confused about who you are. And then, the eating disorder can feel like a compensatory coping mechanisms for this sense of self instability: something’s wrong with me, I don’t know why, the world is loud and unpredictable, interpersonal relationships are painful, everything’s out of control, BUT I HAVE GOT THE EATING DISORDER (and my sense of self becomes entangled with the eating disorder) – maladaptive reassurance.

Listen to part 2 of this interview here!