Like many autistic people, my relationship with food has been strained at best. It starts with the small amount of generally plain food that I eat, ensuring they do not touch on the plate and extends to the time where I was only eating maybe two meals a day, if I was lucky. Food, of course, goes on to influence body image and I’ve been thinking about it a lot recently. They’re so intrinsically linked with both each other, but also mental health.
So let’s start at the beginning – I’ve always been a ‘fussy’ eater. I think it’s easier when you’re a kid and you go out to eat because every menu had chicken nuggets and chips. As a kid without a diagnosis, you’re a fussy eater and it’s not worth trying new things. I’m not saying anyone is to blame for this, just that it’s not worth the meltdown-that-wasn’t-known-as-a-meltdown for anyone involved.
It wasn’t until I went on brownie holidays and school residential trips that I began to hate food. At home, it was fine. Not a problem, my mum would cook food I liked. But I distinctly remember a trip when I was about 8. It was a brownie camp where I’d been okay with food, finding something to eat from the limited choice that I could just about feel comfortable eating at every meal. Except this one lunch time. It smelt too bad in the canteen area where all of the options were just not in my small realm of foods I liked – the smells were overpowering and was simply not going to find something new. I diverted out of the queue and went to the salad bar, sitting down when my brownie leaders and the people from the camp came over. Obviously, they were concerned I was not eating enough but I insisted I did not want the full meal. They got me another salad that was bigger and multiple slices of bread. I understand, now, why they did it, but at the time – as an autistic person with no diagnosis and not even a vague idea of my identity – I despised it. I was trying not to cry, because I didn’t even like the bread or salad much, I just wanted to get through to dinner time. Every mouthful felt like a huge lump in my throat that made me feel gradually sicker. I’m sure I threw out the ‘I don’t feel well’ excuse about not wanting a full meal. It wouldn’t be the first time. I was desperate to finish up but when I’m not a huge fan of a food, I can only stomach the smallest amount at a time. I was so slow, that I missed the whole lunch break to talk to my friends and almost missed the afternoon activities.
From then on, I had a huge fear of food on school trips and other times I was away from my parents. I’d enjoy the day until meal time, where I would freeze and sincerely hope I’d either like the food or be able to sneak away with only eating the smallest amount. It wasn’t like I had the diagnosis to be able to say ‘Emma’s relationship with food is different, don’t worry if she doesn’t eat’. It was awkward. On a later trip, I distinctly remember saying what, at the time, I thought was a lie to a nosy classmate who asked why I didn’t eat much, I said “I’m just sensitive to tastes and smells.” It’s true, though. Every trip in secondary school consisted of a suitcase of foods I could eat after sneaking away from the dining area, but at primary school this wasn’t really an option. I hated feeling like I was breaking the rules when I ran away without eating anything but it was the only option I had.
To bookend one of my first trips away with the last, we had the final school trip I went on. This was when I wasn’t eating much on a daily basis anyway, more on those mental health issues later, so my mum and I organised a meeting with the teacher leading the trip. I got my mum to emphasise “Emma doesn’t eat much – don’t force her to!” I was less concerned with food then, and enjoyed the trip more as a result. No one was watching me eating, frowning thinking I should eat more. To be honest, three small meals a day was a vast improvement. Although, I did have to stop eating bread rolls for a while, as dry rolls were the only food I really liked there.
Even on regular days, lunchtime was a battle. If you’re at school, you eat sandwiches, right? I didn’t. The combination of textures was a huge no from me, and even these days I don’t really eat sandwiches. I used to dream of being allowed home at lunchtime to have beans on toast or crumpets – any food that I liked. Another problem is that when you eat such a small range of foods, you can get bored before too long. After three weeks solid of dry pita breads, you want something else. So I’d have crackers, but then I’d get bored. The extremes that I think make up autism, to be honest. One way or other. Only eating or entirely bored of eating it.
Like I said, at home I was fine with food. Eating out became trickier because for some unknown reason, in adult meals, they decide to put things on top of each other and add a lot of unnecessary extras. Maybe that’s just me, though. Eating out was an experience in itself. It had to be a restaurant I knew, ordering myself was impossible and if the item I wanted was in a different place on the menu? No chance of a successful evening out. I don’t think people realise how prevalent food is in your life unless you have issues with it.
In the middle of my burnout and significant mental health issues, I wouldn’t eat. It’s not necessarily that I didn’t want to, but I’d forget to or not have the energy to get it. Put it this way: if you can’t get yourself out of bed, food isn’t on your mind. So I spent many days in bed until 4 or 5 pm, having not eaten since the previous evening but not being able to process anything but the fear I had of the world correctly, so the feeling of hunger just wasn’t decipherable. Eating a child-size meal was probably a push sometimes, and it – like the rest of my mental health – had been a downwards spiral for years in the making. My relationship with food was just the most disordered it has ever been. Put the generally autistic I-don’t-eat-many-foods issue on top of a lack of energy to do anything but be anxious and you get a scenario of food being hell. I didn’t even know if I wanted to eat, let alone what.
Naturally, I lost quite a bit of weight and was painfully skinny in areas. My hip bones jutted out of my body so much they looked sharp and my rib cage was pretty much on view. When I got dressed, I drowned myself in big, baggy t-shirts and plain, dark colours that would not draw attention to myself. I’m pale as it is, but not leaving the house left me looking like a ghost, something helped by my permanently anxious expression. There was never a moment where I looked in the mirror and realised how skinny I was, I didn’t have the energy for that. My body had become an unknowing metaphor of my mental state so much so that I didn’t even look in the mirror to find out. My body was not well cared for, inside or out.
I disappeared from pictures for quite a while. Those that do contain me show just my head and most have a smile that barely reaches the eyes, if one at all. I don’t look happy or comfortable in who I am at all and honestly I didn’t feel it. It’s not until recently that I’m at a comfortable weight and wearing clothes that don’t attempt to hide everything about me. I’ve never been super self-conscious about my body but clearly I had been enough so that I tried to hide.
My relationship with food can still be tricky. I remember to eat these days but I still despise the smells of some foods. If they’re cooked in the house, I get a warning and disappear into my bedroom, smelling the strawberry hand cream that covers my hands. I despise sauces – liquids and solids generally are a terrible mix – and my realm of food is still pretty small. Nevertheless, I feel that I have control over my relationship with food. I don’t like it? I won’t eat it. I feel up to trying something new? Go for it, but don’t push your limits. Food is so
much less complex as I’m becoming am adult. Yes, restaurants are still awkward, but I can usually find something – even if it’s just a side order. And the people important to me know my limits. They’re not going to make me eat food I don’t want to. My autistic relationship with food is very much there, but my mental health relationship with food is a lot better.
And this is me yesterday. Happy and healthy yesterday and the place associated with my longest standing special interest, having been out for food earlier that day and about to try something new.