Image: SKW Illustrations
The information contained in this post is based on my experience as an autistic person. It is also a collective of experiences from other autistic people I have connected and engaged with and a summary of information I have learnt through my study of Medical Science, Psychology and having my own extensive DNA profiling carried out.
It is not representative of the entire autistic community and I do not speak for all autistics.
I remember bits and pieces of it.
Sitting in the room, alone.
A social worker came in and handed me a cup of warm water to aid in overcoming dehydration.
I was confused, dazed and in a drug induced psychotic episode.
I was in fact, in a psychiatric ward.
And I had no idea.
I was 16.
I was waiting for my Mum to collect me.
I had tried calling her from a payphone hours earlier, but I couldn’t remember my own number and I couldn’t speak because I had bitten through the side of my mouth, creating a swollen and infected space in my cheek.
Biting the inside of my mouth is something I do when I'm thinking, or anxious.
I didn’t know who I was.
I couldn’t remember my name.
The police had been called, I had been found in a service station.
Lost, dazed, confused.
I had wandered from where I was living with friends.
I’d been boarded up inside my room for three days, without food and water and sleep.
Eventually I climbed into the closet so nobody would find me.
I suspected somehow, that I might have damaged my brain.
But I didn’t really know what was going on.
Only a month earlier, I had visited my GP.
I sat in her office, sobbing.
“I can’t stop myself from eating. Binge eating”, I cried.
I had grown up with this GP telling me I was “too fat and need to go on a diet”.
I was a child.
But it was something I heard a lot.
So it must have been true.
Weight was a big deal.
That was obvious.
Those numbers on the scale.
I knew all about stones, kilos, pounds and grams before I was ten years old.
It was a big deal.
A lower number attached to a person's body weight acquainted with a higher value in that person.
Being thin and beautiful meant having it all together. Being right. Being in control of oneself.
Having it all.
And being like others was important to me.
It was exciting.
It was depressing,
It was frustrating.
It was maddening.
It was elating.
It all began with the modification of foods.
The tele said, the radio said, the adults said, the school said..
Lower fat was best.
So lower fat it was.
The tele said, the radio said, the adults said, the school said..
Lower sugar was best.
So lower sugar it was.
A roundabout that goes on and on and never ends, one new thing after another.
And I tried it all.
Before I was 12 years old.
I was talked about often.
Why is she so fat?
Why doesn’t she do something about it?
The shame it must have brought my family.
In everyday life, the fixation.
On foods, numbers, sizes, looks, combinations, volume, timing, weight.
For something meant for survival.
I hated food.
There were certain types that hurt my stomach.
So I interpreted that as having eaten too much.
There were certain types that I couldn’t stop at.
So I interpreted that as being a gluttonous disgusting fat ugly pig.
There were certain types I couldn’t bring myself to eat.
Normally the green variety.
So I interpreted that as being a weak, useless fat ugly pig.
I refused to eat in the presence of others.
All before I was 15 years old.
I was cycling between starving, bingeing, purging.
It was a nightmare I could not wake up from.
And nobody knew how bad it was.
It was a sickness of conformity, of control, of obsession, growing deep within me.
So there I sat, sobbing before the same GP who had criticised me all my life for being too fat.
She prescribed me an amphetamine.
I was 16 years old.
“This will stop you from eating” she said.
It worked. I stopped eating.
I also stopped sleeping.
I started hallucinating.
I completely lost touch with reality.
I was 16 years old.
It hurts me to think about it. My chest is tight and the tears want to flow.
That poor 16 year old girl.
So obsessed with a number.
In such a deep state of self hatred and discomfort in her own body.
In my own body.
It was a hell I refuse to dance with now.
Not even a look in.
There are many theories and concepts around eating disorders.
I think I’ve heard them all.
Eating disorders have recently been highly associated with autism and there is a growing body of evidence to support this.
Had I known I was autistic, I would have understood myself better.
Professionals would have had the means to assist me.
There are many reasons those of us on the spectrum find ourselves locked into disordered eating:
1. We are impressionable.
We love information, and we receive it in many forms from many places. The media, our medical professionals, our parents and teachers. The content we read, our study. When autistics invest their time and interest in a particular topic, we become experts. But that information comes from other experts first and we put a lot of trust in that information as young people.
There is a huge amount of information out there around food. How it should be cooked, what types should be consumed, how often and how much are all important details to the autistic brain. When there is so much conflicting information, we get lost, overwhelmed in it and the business of eating itself becomes an absolute nightmare due to the stress associated with getting it wrong and the rules constantly changing.
Image: Kelso Cartography
2. We fixate.
We really invest in those details. We find something of interest and we 100% devote ourselves to
the cause. When we develop that interest, our entire day can be built around it. It’s all we think about-food was on my mind before I even opened my eyes in the morning. Will I eat? What will I eat? Should I wait a few hours? Should I eat straight away? Intermittent fasting or kickstarting that metabolism? On and on it goes.
The aftermath of eating is ever present as well. The guilt. The fear. The panic. The disgust. These are all emotional experiences that result from an overwhelming abundance of conflicting information. And when we develop an interest in something, you better believe that we become experts; to the point where we often know more than the actual experts.
I knew every diet out there-what foods, how often, why, how it impacted the body, hell I even went on and studied health and nutrition at university. You name a diet, we're an expert on it.
3. We love rules, steps, guides and processes-organisation.
Planning is a big one for me. I always have and always will love planning and organising. And if you’re an autistic like me, you’ll enjoy the process of planning so much that you’ll invest heavily into that more than the actual action you’re planning for-in fact, sometimes we don’t even get to the action itself.
Diets-times, days and schedules for eating are appealing. Methods for preparing foods, planning to work towards a particular number on that scale or inches around the waist are often very exciting for an autistic. I love working with numbers, goals and achievements. But here’s the huge oversight: the body more often than not will not allow us to succeed in dieting for long. This is because it is designed to be fed intuitively. And an autistic body in particular, is extremely hypersensitive to change. It is designed and geared to protect us, to kick into overdrive when we are slow to process the world cognitively. We can only get so far with weight loss when it's carried out in a fashion of deprivation before the brain will begin sending us hungry signals-starving signals and it will do whatever it can to get us to eat. Sometimes, the body wins..and the bingeing takes place. But then we remember the messaging from society (despite it conflicting with the messaging of the body) and we attempt to pull ourselves back into line. This can be done through starving and purging.
4. Our bodies seek to regulate in any way that it can.
Food. Alcohol. Drugs. Gambling. Stimming. Sex. Anything that’s a distraction away from reality is
the route our brain will signal our body to take. The autistic body will kick into overdrive where there is emotional discomfort or change. We must remember that in an autistic person, even happiness can bring about a level of discomfort. Many of us can become hyperactive when we’re happy or joyous in order to regulate ourselves, but when we live in a society that frowns upon what is considered typically autistic behaviour, our brains and bodies will seek to find other methods.
For me, food was it for a long time.
Even now, I work consciously every single day to be present with my body, to keep my mind and body connected and working together as much as possible.
Where I am happy, my body instantly craves sweet food. Where I am sad, my body craves sweet foods. Where I am anxious, my body craves sweet foods. Where I am emotionally unregulated; that is, not in a state of balance or equilibrium, my body will do whatever it takes to bring me back to that state..with food.
For many of us, it will be alcohol, drugs, many other things if our autistic needs aren't being met. Our bodies and brains have natural ways of regulating-stimming, engaging in our interests with hyperfocus, having plenty of downtime are all aspects of life that are crucial for us to thrive. When we aren't in tune with this (and unaware that we're autistic), the brain will find the easiest route available to feel better.
5. Eating moves our focus and returns us to the moment.
So many times I read from experts on this topic that eating is a distraction. A way of moving away from deep emotional pain. Yes, it can be. For me, eating to the point of discomfort meant that I actually moved myself from the state of obsessive thinking and feeling into a physical consciousness. If I felt uncomfortable, in pain, bloated and full, I was forced back into the ‘now’, the moment. I was moved away from my deep engagement with problematic, unhelpful thoughts and back into reality. Of course overeating wasn’t a great way to achieve this, but it also wasn’t a conscious process that I thought out.
It was my body’s way of giving me that gentle nudge to come back. The brain taking the fastest and easiest route.
Image: Bo and friends
6. We are often traumatised.
There is a vast difference between emotional stress or uncomfortable feelings and trauma. As of
late, there has been a deeper exploration of trauma in the autistic person.
We are easily traumatised. This can be related to our oversized and overactive amygdalas being responsible for the processing of emotions and for identifying threats in our environment and invoking a fear response.
Now here’s the added bonus for the autistic person-we also have a brain that works largely around processing by association. This means that our sensory input; the things we smell, taste, hear, see and feel can remind us of past traumas. My autistic brain likes to traumatise me often. In the supermarket when I hear that song from that time where she did this thing that hurt me deeply. In the car, driving past that area of town where they cook those things and the smell of those things remind me of the night when that thing happened after we cooked those same things back in 1983. That TV commercial where there’s that thing sitting on the table in the background and it takes me back to the time when I saw that horrific event and one of those things from the table fell out onto the ground during that horrific event.
Catch my drift?
We remember everything by association. Association is brought on by sensory input. We are sensitive to sensory input.
We are hypersensitive to trauma.
So if eating is the way in which my hypersensitive body seeks to regulate my everyday emotional and cognitive discomfort..imagine me, food and trauma. Think about how often my brain will be messaging my body to eat in order to feel better if I'm regularly triggered by what I see, hear, taste, smell and feel in my everyday life.
7. We relate by association.
There were parts of my body that I rejected as a young person because they resembled the same body parts of other family members. Yes, that’s what happens with DNA. But, it completely weirded me out as a young autistic person to look at my legs and see my father’s legs. Or to look at my feet and see my mother’s feet.
I wanted my own body made up of the parts of what society deemed as acceptable, as beautiful. I wanted those knees and legs that the teen models in Dolly magazine had. I wanted less hairy eyebrows, not the ones associated with Effie on Acropolis Now. The media had such a strong influence on my autistic brain-almost everything I heard and saw could be related back to something I’d already heard and seen accompanied with a message of either positivity or negativity.
We don’t forget.
Where there has been sexual abuse, or other types of physical abuse, the trauma of associating body parts is rife. Where a person has been abused as a young person, more often than not, there is a complete rejection of the body that the abuse was perpetrated against-the vehicle of violation. That body is the same body a person spends their entire life in and making peace with that is extremely difficult.
Food can often be used as a comfort, as a means to come back to the now, as a means to regulate from trauma in the sense that it can actually change the shape and visual appearance of the body to make it look different.
8. We like order and routine.
Food has no order. It contains a variety of textures, volumes, weights, density, structures and
that’s the food alone. The time to eat, how often and how much varies as well. For the person who eats intuitively (as intended by nature), this works. The autistic brain, however, seeks order. It seeks patterns, sameness, routine. It seeks to know when, where, how much and how often to do something. It seeks to know what to eat. It seeks a process, an outline, a guide of some sort. Intuitive eating lacks all of this. Expecting the autistic brain to accept and know how, what and when to eat according to how we ‘feel’ is a process in itself. Think autistic children-visuals, routines, order and sameness work. They bring comfort, security and safety. Autistic children don’t just disappear or overcome autism-they grow into autistic adults. And here we are, seeking those same things.
So when you see adults eating the same foods every single day, understand that it's safe for them. Understand that this is how their brain seeks to protect and regulate them. They have found order and moving out of that can be terrifying.
9. We seek, avoid and are sensitive to sensory input.
Food is a sensory experience. Having a body is a sensory experience. Our sense of smell can be heightened, as can our taste, our experience of textures and our visual perception. This is how the autistic brain is wired. It can involve any one of these, some of these or all of these sensory differences.
This makes having a regular relationship with our bodies and food extremely difficult. We know this because it is well known when regarding children on the spectrum. Again, children grow into adults.
Eating was a sensory input for me that my brain sought out. We seek sensory input to regulate, to calm, to feel better, to be provided with security and safety.
On top of all of this, many autistics have an inner body perception difficulty associated with interoception (the ability to understand our body’s cues to communicate to us when we need something such as food, drink, toilet, etc). We often feel great discomfort when our stomachs are full or food is taking up space in our bodies or our digestion is felt by us, and it can be a sensory hindrance for us rather than a normal process that goes unnoticed. Many autistic women report feeling better when they are not full of food and choose to eat only in the evenings.
Image: The 12 chairs.
10. We struggle with change.
Bodies change. We go through puberty and our bodies change dramatically. To the point of
trauma that is largely internalised for many of us. New smells, new visuals, new feelings. As a child, I struggled with the way my body looked and felt. Being contained within a body itself was an epic sensory experience alone. Our bodies don’t always do what we want them to do, and then as we age, they do things we don’t want them to do. Having that lack of control can be extremely daunting and fear inducing.
For many of us, anxiety alone produces anxiety. The fear of a panic attack lurking, the physical symptoms associated with anxiety; the diarrhoea, the autoimmune conditions, all of it is outside the realm of what we can control.
Mealtime can be an absolute hurdle. Just getting through breakfast can be extremely difficult and even traumatic for many on the autism spectrum, so being ready for another meal at lunch time and then at dinner-a meal that is different to the last one that took us an enormous amount of courage to confront. Imagine this, every single time you eat. Change is daunting and whilst exposing a person to the same process repeatedly might be helpful in many cases, it is NOT helpful for those of us on the autism spectrum and can traumatise us to the point of not eating at all.
11. We strive to be ‘normal’ and/or accepted.
For many of us, particularly those who are undiagnosed, we spend our lives attempting to be like everyone else. When we’re younger, this is the goal for many of us, whether autistic or not.
In my early twenties, I found a specialist GP who worked with those who were overcoming disordered eating. His practice promoted intuitive eating, a concept completely foreign to my autistic brain. It didn’t matter how hard I worked to eat like others, to feel into what my body wanted and needed was a huge struggle for my autistic brain.
My brain is wired in such a way that it almost seems impossible to come to a place of intuition, spontaneity and need based action when it comes to food. This requires a process of self acceptance, identity, self awareness and self love. Of which I had none. Again, our autistic brains seek rhythm, repetition, order and pattern. We are not like others. We are different, and different is okay. But our difference asks us to find ways to get us to the same place as others via a different route.
We’re not simply stopping disordered eating. We’re facing a process of having our neurology accepted and understood in order to work with it.
Image: Jeff Hendrickson
12. Society encourages low self worth.
Think about all of the information, advertising, books, journals, programs you know of that work
around the subject of food, nutrition, dieting, body image, etc.
How many of them promote acceptance?
Not many, eh?
As a young person, I STUDIED girl magazines in order to know how to look, talk, present myself and mask.
As humans, we’re encouraged and conditioned to vote with the majority. Scientific studies are built around this very concept. So when society consistently bombards us with the messaging that we need to look better, and to eat a certain way to get there (but that certain way has a thousand different faces), the positive messaging around individualised, customised, intuitive eating and body acceptance tends to feel a bit outnumbered.
Autistics already contend with so many challenges as it is, and so many of those take us outside of the norm that we are often too exhausted to even try and challenge the status quo. Therefore, we remain suspended in unhealthy lifestyle challenges.
13. We are largely chemically hypersensitive.
A large number of people on the autism spectrum are hypersensitive to chemicals, foods and their environment. We are often plagued with autoimmune diseases that are also widely impacted and affected by our diets. As a child, I battled regular migraines and still do. As a teen, I suffered with cystic acne and endometriosis. At 21, I was diagnosed with Crohn's disease and psoriasis and in my thirties, fibromyalgia and chronic fatigue. Each and every time, I was informed by professionals that diet was not relatedto the flare ups and severity of my symptoms. I found this hard to believe and decided to seek help in the area of nutrition anyway. As a result, my Crohn's went into remission, my acne cleared as did 90% of my psoriasis and my fibromyalgia also lays dormant. This won’t be the case for everyone, but I learnt through that process that I am intolerant to a complete range of foods-including a variety of organic fruits. The autistic body is sensitive. Hypersensitive. It is fragile because it is working overtime to preserve a fragile being whose cognition often lags.
The difficulty with many food intolerances is that once an ill tolerated food is ingested, it can trigger a process of the body working itself into a desperate frenzy for more of that same food. A food can be a drug to the body. Particularly processed foods containing chemicals.
Now don't get me wrong-the point here is not to demonise particular foods, because I still eat processed foods when my body calls for them. But it's important to be aware that autistics can be more sensitive to foods and chemicals than others. And being aware of food intolerances can be almost impossible as there are often no obvious symptoms that fall outside of regular everyday bodily processes such as tiredness, sinus issues and itching.
It is common for autistics to possess gene mutations that affect methylation pathways-otherwise known as detoxification, along with the processing and digestion of foods . Over time, with the consumption of ill tolerated foods and environmental chemicals, we can become chronically ill if those pathways aren’t assisted.
Of course this will not be the experience of every person on the autism spectrum, but it certainly has been mine.
There are certain foods that affect me cognitively; that slow me down, that send me to sleep, that increase my anxiety and stimming.
P.S This does not equate to being toxin laden human beings whose autism was caused by the food we eat. Just no.
P.P.S Whilst eliminating and/or replacing ill tolerated foods from the diet may reduce discomfort and some cognitive challenges for me, it will not reverse or cure my autism.
14. We seek control.
Throughout my life, wherever there was a sense of having little to no control, I created it in other
In my early twenties whilst sporting a drug and alcohol habit and out of control, raging anxiety and depression, my house was spic and span.
And I don’t just mean it was tidy.
My hands cracked and bled from scrubbing cupboards, doors, walls and floors with cleaning chemicals all day long. I was pedantic and obsessive about it.
The autistic brain seeks control in whatever capacity it can get it. And when we feel our control is being taken away, we fight back harder in other areas.
Food and eating is a big one. Starving, methodically planning out binges and purges. It all falls under the need to be in control. But we aren’t always aware that control is what we’re attempting to create.
For me personally, all of the above points were absolutely unconscious in me whilst I was in the throes of disordered eating and body hating.
I had no idea I was autistic and just felt I was an average female seeking to lose weight, because our sad reality is that many women consistently comment on their bodies and their consumption of food in negative and self deprecating ways. In fact, it's rare that I am in a room with another woman during a meal of any sort where there isn't a statement made such as "Oh I shouldn't.." or "Oh no thanks, I'm watching my weight.." or "No way, I've been so bad today". And it makes me so sad.
Here’s the reality-there is no attainable goal for a person engaged in disordered eating. As with many perfectionists, we strive toward something with constantly shifting goal posts. The number on the scale is only exciting for a moment, until we reconnect with that self hatred and feeling of uselessness in striving for the lower number, and the lower number, and the lower number.
And where does it stop?
When dieting, there is a cycle of restricting and counting, then eating something we feel bad about-because the brain has instructed the body to do whatever it takes to get you to eat as it recognises the change and the abnormality in our eating patterns and is doing it's one job to help us LIVE; and then of course the outcome of eating that thing we couldn't stop ourselves from eating sends us into a purging or starving or self hating state.
And again, where does it stop?
How many dieters actually hit an ideal number on the scale and stop restricting?
When we force our bodies into a number that is not necessarily natural for us, our bodies don't give up and our brains do not lay dormant. They keep up the good fight and continue that messaging-EAT!
And we are forced to continue restricting, counting calories to sustain that magical number and we know what it takes to do it as outlined above.
As an adult autistic woman today, I have to make a conscious choice every single day, sometimes every moment of every single day to not diet. To not count calories. To not weigh myself. To be grateful for my body.
And here’s the irony: my body is larger than it ever was. But holy shit I love it.
My body has carried and given birth to all of my children. It has shown the greatest levels of resilience in the face of the abuse I cast upon it. It has seen me through autoimmune disease, drug and alcohol addiction, endometriosis, and it works in overtime to preserve my sanity in unison with my autistic brain.
I choose every single day to respect and nurture my body.
Disordered eating is something I will always battle, because my brain seeks order and control. Because I am autistic and this seeking is a natural process for me.
My brain struggles with the unpredictability of not planning and telling it what to do, regarding food. But over time, it works it out. Our brains ARE malleable and can adapt slowly and with gentle reminders and reassurance of safety.
When I stopped the cycle of disordered eating, my brain began to relax and let my body know that all was well. They slowly but surely began to not work so hard to get me to eat and I began to stop panicking when I enjoyed certain foods.
I don’t deprive. I don’t withhold. I listen. And it has taken years to get here and many slip ups. I choose foods that help my body to function at it’s optimum levels but when I feel like a pizza or a bar of chocolate, I absolutely have it.
I don’t stigmatise food. What we resist will persist. My autistic brain fixates and it wants what it knows it can’t have.
At 16, I achieved that number. I got there. It accompanied me to the psych ward, out of my young, impressionable mind in the midst of a dieting drug induced state of psychosis.
I had to be heavily sedated for weeks after, nursed back to health, and certain areas of my brain have not yet completely recovered- I have never been able to play the piano the way I did when I was younger and I have no feeling in certain parts of my body as a result of that overdose.
Was it worth the number on the scale?
The lengths we will go to to have our bodies look a certain way is excrutiatingly sad.
My self worth is no longer tied to my physical body.
Today, I am confident.
I am grateful. I am free. I am happy.