Eating Disorders and Autism
Eating Disorders & Autism
Something I have always struggled talking about is eating disorders, mainly because I was confused as I never saw myself as being overweight, or having a bad relationship with food. Maybe due to shame, due to the misconception being that eating disorders are intentional and superficial, when in reality it is an external response to an internal pain. With that, I want to dedicate this space to address the stigma and stereotypes surrounding eating disorders, by expressing my experience. I truly believe that if at the time I was suffering from an eating disorder, I knew I was autistic, my experience, acceptance and treatment would have been hugely different.
We often assume people choose to overeat or withdraw from eating as a control mechanism when feeling stressed. Another belief is that people form unhealthy eating habits over a period of time.
A somatic perspective would suggest when living in hyper-vigilance (dysregulated nervous system), our brains believe we are under immediate threat and our priority is survival. This leads to the brain producing excess cortisol, giving us a rush of adrenaline, in an attempt to regain homeostasis. Our physical behaviour would suggest irritability, high alert, unable to relax, often irrational and unable to problem solve effectively (reactive). This is due to the parts of the brain going on standby in order to conserve energy for survival.
The state of hyper-vigilance stems from trauma; which can be both small consistent negative experiences, but also extreme isolated incidents. Over time the brain attempts to protect us by dissociating from our feelings. This is an attempt to self protect, which as a result we become unable to recognise bodily sensations. For example, if we cant identify sadness, we may be able to ignore it. Or if we distract ourselves for long enough, from the pain we are harbouring, we will eventually become detached. Surely being detached is safer than risking vulnerability, pain and connection. Some people question if it is better to have loved and lost, than to have never loved at all. One major cue we are likely to miss through protection/survival would be the feeling of hunger.
Humans have a dopamine pathway in the brain, where if we complete a task that gives us a sense of relief, we receive a feel good hit. This reward reinforces us to repeat the behaviour, in turn creating habits and addictions. When we choose not to eat, we feel empowered, like we have a sense of control, which triggers the feel good hit. This is self-harm, be it starving, fasting, dieting, purging, we are trying to find a quick “fix it”, to a long haul internal wound.
This would suggest that an eating disorder isn't necessarily centred around body size or appearance but a subconscious drive to feel safe.
The autonomic nervous system is responsible for the involuntary physiological processes in the body, like breathing, digestion, sexual arousal, and heart rate. it is happening in the background without our awareness. When we feel stress or anxiety, our autonomic nervous system is impacted through our digestion. Over the years I have learnt girls with autism commonly suffer from unknown bowel problems and or eating disorders, whilst suffering from anxiety and living in a state of stress. When this happens the nervous system becomes dysregulated meaning the stomach still creates the same amount of acid, yet the motility of the digestive system is slower. This causes the stomach lining to over fill and reflux can occur.
I had suffered from constipation anxiety and unknown stomach issues from being so small, which over time led to slower motility, acid reflux, belching, and sickness. If an earlier correlation had taken place, there would have been less shame, more understanding and an opportunity to heal sooner.
My bulimia began the day I turned 18, however my eating disorder had been spiralling out of control years earlier due to being overstimulated, overwhelmed, a lack of acceptance and identity, poor executive functioning and decision making. From being a young girl I always loved my food, it was definitely a sensory issue, I would gorge and fast, but I struggled to identify when I was hungry, what I wanted to eat and when I was full, but I was never over weight.
My grandad would often tell us all “slow down”, “dont inhale your food”. Now, I know it is common amongst people with ADHD and Autism to eat quickly, especially if you live in hypervigilance, everything is quick. I dont actually do anything slowly, everything I do is really fast, heavy handed, and often clumsy, be it cleaning, washing, walking, driving, eating, drinking, talking, singing, dancing. It is all fast, but my head is fast. My thoughts are fast, my feelings are fast, my podcasts are fast, everyone else is slow, but then that makes me different.
I dont remember much of primary school lunch times, I struggled choosing which hot meal, I struggled picking the wrong lunch box, it was noisy, I didnt know who I would play with at lunch time (I felt a missfit) and I was always embarassed at what I was eating and how it was wrapped compared to anyone else. I remember I had tummy ache a lot, I would cry a lot and I would avoid school a lot. When I went to high school my relationship with food changed again, I would still look at the food and desire it, but I would struggle to actually eat there. With hindsight it is all very obvious I was displaying signs of autism, but I had no idea.
In our school, lunches were split over three shifts, this meant the time I would eat would alter daily, as well as the people eating. There were multiple refractories; a hall for sandwiches, a tuck shop outside, a sandwich and jacket potato counter, 2 x canteens with hot food, and an ice cream van which sold fast food, ice cream and sweets. Everything cost a different amount, and I was overwhelmed. Don't get me wrong I am good at maths, but being autistic I struggle to make quick decisions, not necessarily because I am indecisive (although it can appear this way), but because I held such a high expectation of food due to my sensory needs, and there was so many contributing factors required to consider and fast.
My experience of autism is that I am unable to make impulsive decisions, without carrying shame, regret, anxiety and guilt. I feel I need to analyse all possibilities and eventualities to ensure I make the “correct” decision, if not I risk choosing the “wrong” thing.
So When the bell goes for dinner and the corridors are manic, I need to weigh up who can I quickly tag along for lunch with, my anxiety is peaking, hopefully if i walk round and assess all the different options, I will be able to tally up who is sat with who, where I will feel most at ease or am I better to stay alone? I need to review the types of food on offer, the length of the queues, the weather, what would be left by my turn, and so forth. When I first started I would copy what other people ate, but as the years progressed I couldnt copy, it was too impulsive, I may not like it and I would feel bad for the rest of the day for wasting my lunch money.
I saw lunch as chaos, Id rather go home earlier than have a break. I was amongst rowdy teenagers in a lunch cue with bright lights, echoing chit chat, comparing the cost of the items in the fridge versus the cakes and the mains, (I also wore glasses and often struggled to see clearly), alongside the ushering of the kitchen staff. When you insert someone like me who has other external stressors it all becomes very overwhelming, and as I get to the front of the queue I scan the available products, hesitate, struggle to quickly establish the “correct” choice and back out of eating altogether.
In my head I was playing it safe, by choosing not to choose and ultimately starving myself.
During my time at school I was riddled with social anxiety, I didn't know where I fit, if people even liked me, I tagged along and I was confused a lot. Even when I was part of a group, I felt different, as if I didn't naturally fit or flow with the conversation, I felt disliked, judged, bullied. I would often take myself away and do laps of the school, making my way round the different toilets to waste time, but I could be alone with my thoughts, I just hoped no one would see me. Eventually when I was in the higher year groups I would only come in for my lessons; unless I could get away with working from home.
Withdrawing from making a lunch decision, simultaneously relieved me of all of these other pressures I was experiencing at lunch times; essentially my brain learnt by suppressing hunger cues, my social anxiety would be marginally reduced. So although I was tired, full of emotion and missing endorphins from food, my fight or flight state had suppressed my need to eat, I was flooded with adrenaline, and I had curbed my anxiety.
In more technical terms the basal ganglia sends hits of dopamine down the reward circuit, telling the brain this is good, resulting in addictive patterns of behaviour. This means over time my stomach would shrink, stomach acid would build, I would become more disconnected with my feelings of hunger and I would learn to live in a permanent state of hypervigilance.
I mean sure, my anxiety was momentarily controlled, but can a brain function without any fuel?
As I didn't understand why I was repeating these habits, I had no way of stopping it. I would often wonder how people could choose so easily, how could they eat so much food in the day? How could they be so relaxed? Why would all these people waste their money eating? I was proof you didn't really need to eat, if anything this helped my anxiety. I used to think “I dont really fancy anything, so I must not be hungry”. I was puzzled at how all these people could make half-hearted decisions on what to eat and there be no consequences?
No part of my brain recognised food was a necessity for survival, if anything my brain believes starvation was necessary for survival, and still to this day I have to remind myself to eat and drink to support my regulation.
I couldn't control all the other anxiety I was experiencing at school, at home or in my head, socially and emotionally, but I could choose to reduce it by not eating, and having this little triumph was a slight relief of pressure, and so I guess I felt I had gained some control or that I had punished myself enough. I think for me I could justify my behaviour with the attention I was receiving on my appearance. When that is the brains way of tricking you in to continually reinforcing the behaviour pattern. I thought I felt a sense of acceptance and belonging and my confidence grew in association with this. I became obsessed and absorbed by how much I weighed, more the number than my appearance, although it was never to do with my appearance to start with.
The eating disorder controlled my confidence and self-esteem, by how skinny I was; my brain had inaccurately associated the two forming an identity.
As my 18th came around I was feeling out of control, I would be going to university soon and resistant to all of the coming change. It was on my birthday, my family was round the table eating Sunday dinner - one of my favourites. The conversation was a debate as always, where we all felt conflicted in our opinions and it was a struggle to articulate our views. My oh so traditional Grandad passed judgement about the change in times, which really irritated me. I can't remember the comment, I can only imagine either I took it literally and personally, as being autistic I am very emotionally sensitive to criticism, rejection and I am extremely literal, and may have related the comment to how I was feeling internally, thus feeling marginalised in my home. Maybe it was my desire to identify with a group or to feel I belonged, to feel comfort, maybe I was hungry. Physiologically his opinion caused my brain to feel under threat, even rejected, simply due to his old fashioned judgement. The evening ended with an argument, where I felt ostracised, my fight or flight kicked in, and I escaped to run a bath and that is the first time I recall being sick.
That content isn’t necessary, because that wasn’t why it it started. I imagine it started as a negative belief system, I inherited by DNA, reinforced by nurture and random experiences, I interpreted and stored away throughout my earlier years. My question to you, is did the experiences excel my autism, or did my autism determine my experiences?
The most relational experience, I would describe how growing up my mum was conscious of her weight - as the majority of women are, but as a teenage girl who was very observant, sensitive and literal. As an outsider looking in, I probably used my mum as a focus on how to be in the world. I didn't feel connected to much and rejected by most (which is an autistic trait), and I would observe patterns of behaviour exhibited by my mum. My mum's personal expectations, her weight goals, her failures, I would take literally and apply them to myself. I thought I wasn't good enough for her, I saw everything as a reflection of me, when in reality she was never talking to me, and she would be heartbroken to think that projected onto me; her sarcasm, her passing comments, her self talk. The way my brain works, I see everything as equal; equal standards, expectations and values, so I interpreted it as relative to myself. In reality it was innocent and because we didn't know how differently I perceived the world, we didn't realise the damage it was doing.
The changes kept coming as they do in the evolving world of an 18 year old, drinking alcohol being one of them. This was strange to me, I didn't really drink as I didn't like the taste or the feeling and I couldn't understand other people doing it, but sometimes I would go along with it anyway because that was the norm. I went to university, believing I was excited for what I expected it to be, however from my experience, I think it’s near impossible to meet the expectations an autistic person has in their head.
When I got there I struggled navigating, I struggled making friends, feeling comfortable, eating and socialising (as I really struggle with small talk), and I spent the majority of my time in my room gorging on food and being sick. I would come home to work as often as I could, and I spent a lot of time walking, mainly because I didn't understand the transport or the bus route and walking made me feel elevated and free. The campus overwhelmed me, so I stuck to one route which made me feel safe and rewarded when I completed it. I couldn't go home because psychology was the only thing that made sense to me, it was my language, but being at university had all the anxieties of school but on another level. I was drowning.
With failure came so much fear, where being clever was the only identity I had, without this I was nothing. Did my eating disorder bring a familiar comfort in an unsafe world? Or had I started to identify with my eating disorder and disconnected from my psychology?
When I came home my mental health spiralled, I had lost all my confidence, I hated myself for failing, I was embarrassed, I didn't want to leave the house, to see anyone who may ask me something I couldn't answer. I had never anticipated this path and I couldn't handle the unpredictability of it, I had no direction or purpose. To an autistic person not knowing what is next can be unbearable.
Leaving university, admitting failure had shook my core, I was living in a state of freeze, opposed to fight or flight. I was shut down completely, withdrawn whilst everyone else advancing ahead, I would mask my feelings and swap the sickness for drugs, not drink, just drugs. With drugs there was a level of control. For a while, hanging out on drugs alleviated some of my anxiety symptoms, even some of my autistic ones (with new awareness). I thought I had friends, but I never understood the social cues. I always felt they didn't really like me, the way my brain worked, but because there was so much drama happening around me, I guess I blended in. We were all a bit different, suffering internally for one reason or another, misunderstood. I was separated from my family for some time, I felt rejected and misunderstood, confused and lost.
Over the years, at my worst, I would strip off and weigh myself multiple times a day, before and after food, I would need to rush to leave the table any excuse. I would be sick until I was empty. I would be sick in bags and then carry them outside, My fingers had cuts and bruises on my hands and knuckles, my throat was ripped open and sore. I would reward myself if I could not eat all day, or if I walked so far I could have some sweets. It was a mental game I was playing. Or in moments of madness when I was really struggling mentally, I would gorge then purge and repeat. I was so lost and so broken. Subconsciously, I was punishing myself.
Still as the song states “the drugs don't work”; I never felt accepted, like I belonged, but at times I had a purpose. To some I created drama, but to others I was a problem solver, a fixer, and as my brain runs at 10x the speed, I was a student. I was subconsciously observing the patterns and behaviours of those around me. I felt their stories, I easily drew conclusions, linking histories, cross referencing experiences and gaining such a depth of knowledge. It all just made sense to me, I could read people like I could read a book. It was a language I understood and in that, I remembered who I was, there was no escaping it, psychology was finding its way back to me. I was one of the lucky ones, to have the control and mindset to step out of that world.
The drugs went away, and the sickness persisted. It was part of my auto-pilot, sometimes I didn't know what to choose, sometimes I would be sick with anxiety, or panic attacks, certain food types would make me belch until I was sick. On reflection I showed many signs of autism; I always had intolerance’s to certain food, I had struggled with severe constipation since being a child, and hormonal problems as a teen. Looking from a physiological perspective, it could have been my anxiety and suppression, showing up in other areas in my body. As a young adult I took way too many constipation tablets to help stimulate my intestines, fearful I would put a single pound on the weighing scales. It was an obsession, it was my identity, my thoughts day in day out.
How irrational is it to think my safety was dependent on the number shown on the scales? In reality the brain's primary job is to keep us safe from threat. I was an addict because I needed to feel safe.
It was something I wasn't consciously aware of, it wasn't an immediate response to a bad event. I thought there was something wrong with me, I never felt the way others looked to feel, I hated how I felt inside so much I never wanted to have my own little girl, who could feel the way I felt growing up. I was always on the outside looking in, faking to fit, not really understanding who I was. These feelings of difference led to this behaviour, my body was rejecting the food because I wasn't honouring my body, mind and soul. It was a stress response to all the daily traumas I was suppressing, the stomach acid would pile up and I couldn't control it. This became my autopilot, which like drugs, alcohol, smoking, the gym, excessive spending, gaming, gambling and porn, are all "fix it" responses.
Becoming a mum really helped with my eating disorder, it basically went away as I had a focus that needed my attention all the time, and I guess it didnt matter anymore, I no longer needed to escape, or to punish myself, I belonged, I was part of a family, I was someone's mummy and that was my priority. Speaking from an evolutionary and physiological standpoint, I was living in accordance with my values; a mother. I was fulfilling the role expected of a female in society, where he needed me and I needed him. The role of a mother was something that felt easy and straightforward to me, which is why I think I subconsciously punished myself for failing as a woman (fertility problems). For a while this was enough to distract me, until I realised I didn’t feel love the way everyone else felt love.
If you take anything from my story, let it be two things:
My eating disorder was both a physiological and psychological response to internal pain. It was an attempt to fix myself, to feel safe in an out of control environment. My eating disorder was a symptom of being an un-diagnosed autistic girl. Masking the character of a mummy saved me. Being autistic at this point was still foreign to me, but the more I understood psychology, the closer I became to understanding me.
Addiction isn't limited to drugs and alcohol, addiction comes in all shapes and sizes, and the "fix it", coping mechanism (because that's what it is), isn't the issue. We need to spend time understanding the wounds we are carrying to make us abuse our lives so much. Only by looking beyond the addiction, through identity, trauma, managing emotions, resilience and growth, can we take ourselves from that state of threat to safety. Addicts are people who are living in a negative autopilot. They can't escape as they dont feel safe.