My Complicated Relationship With Food

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.

MEAnd 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.

Moving On: The Light at the End of the Tunnel

In September, I made the most significant choice of my life so far – I began college. For my international readers, this is an alternative choice for the two years at school, where different courses are offered to the exam-based ones found at school. I’d found a course that I was so excited to begin, a BTEC Level 3 Extended Diploma in Applied Science (Forensics), with the Level 2 version as a back up if my GCSEs didn’t go to well. Fortunately, they did! I finished school with all As and Bs, which, considering I wasn’t in school much but put a lot of work in, isn’t too bad.

So, I was ready to begin. I’d had a support worker already in place – something that my diagnosis allowed me easy access to – and had toured around the college a few times, to get a feel of it. I remember on one of these tours, a tutor – who teaches me now – asked if I was looking forward to the course. I answered that I definitely was. She then asked if I was looking forward to making new friends. I paused for a moment, unsure, and simply replied “I’m not too sure that’ll happen”. She assured me it would, and I have to say she was right!

On the first day, I was scared but excited. I was away from school, and it was all I could have wanted, but I also didn’t want to be alone. By the break, however, I’d managed to make three friends, something that shocked me quite a bit. I’d felt alone throughout school, feeling like I was an outsider and, towards the end, the person who only seemed to receive comments of “Oh my god, you’re actually alive?” when I felt okay enough to attend lessons. But at college, everyone was new. Standing there in my Harry Potter top, being open about who I am – including having anxiety and being autistic – I made friends who were fine with it. It was the first time I’d gone into friendships knowing who I was and saying it from the start. It’s another one of the times that makes me so glad for my diagnosis.

I have friends who like the same things as me, at times are as ridiculous as me. Friends who are happy to go and get piercings with me. Friends who are comfortable with who I am, making me more comfortable with who I am.

Over two months after starting college, the change in me is quite incredible. I’m looking into university as a serious possibility at the end of my two year course, while also knowing my boundaries in that respect, and not looking at universities too far away from home. I’m considering learning to drive and looking at places I might be able to work in the future. I’m able to rationalise anxiety that’s normal and anxiety that’s not. I’m able to get myself out of bed and get myself ready for the day, without needing everything talked through. I’m the most independent I’ve ever been – I’m fine with leaving the house alone these days, while also taking my family up on the offer to go out with them when it’s there.

This isn’t to say I’m fine the whole time – there has been shutdowns, stress and difficulty with understanding the world around me. Those things aren’t ever going to change – I’m autistic, it’s who I am. I’m more able to deal with it, though, because the environment is different. As my mum – a teacher – always says ‘School is a place where square pegs are expected to fit in round holes’ and what we’ve noticed is that college is not that. There’s so much less fitting in, less ‘you must sit here now, still and quiet, but move in exactly one hour’ (even if that’s when you’ve just about got settled), less pressure to be who you’ve been for the last five years. It’s a fresh start and one that’s changed my life.

This, however, isn’t just an update about me. It’s my offer of guidance, in a way. I know quite a few people have read this blog and got in touch with my mum, realising the situation applies to their family members. I want to stress that there are options, ways to make things easier while school is still compulsory and there are people who’ve been through it all before (like myself!). For this reason, I want to remind people that you can comment on my posts or email me directly ( at proudlyautisticblogger@outlook.com) if any of this resonates with you. My experience with school and the difficulties it brought along were awful in some ways, but if I can take anything positive from it, and use it to help others, I’d be happy to.

I’m also looking to make some more ‘A Guide To:’ posts, but they require a lot of fact-checking and time, so they’re entirely dependant on my college workload. I’m hoping to write some shorter posts, like these and memory posts, while those are in the works. Thank you to everyone who’s been reading, commenting on and sharing this blog – it means a lot!

Achievements: An Honest Account of Going on the Bus

Ever since I can remember, my family and I have travelled on trains or in the car. I could probably count on one hand the amount of times I’ve been on a bus. I’ve never really like it, the motion makes me feel ill and the fact I hadn’t done much them made me feel scared.

For some context, I find painting and card making very calming, a way to relax my overworking brain. Every month or so, I like to make a trip to a shop or do an online order to buy new supplies. After realised I’d be spending the whole day inside on Monday, today as I’m writing this, I decided to go to the nearest arts and craft shop to me. Usually, my mum takes me to the shop, but she was working. I’d thought about the train but the route was far from direct and would involve a walk I’d never done before. The pretty much door-to-door solution was the bus.

As an autistic person, doing something that I’ve never done before is so daunting. Yes, I’d been on the bus, but hardly enough to remember and never by myself. I have to try and prepare for every eventuality before even deciding to do something. The reason for this is that when things go wrong, my body goes into meltdown. I usually cry, go non-verbal and feel completely crushed inside. It hard to explain but even harder to deal with, especially alone. As a result, my parents and I went through everything last night – how to get the bus to stop, which side of the road to stand on and which number bus to get were just a few of the things we discussed.

This morning, I woke up feeling ready and somewhat excited – I love buying new art supplies! I brought my bus ticket on my phone with my mum, which filemeant I didn’t have to worry about asking for the right one. Approximately ten minutes before the bus was due to arrive, I was standing at the bus stop, nervously checking the live timetable on my phone to get an idea of when it would arrive. Bouncing on my feet, I realised I was also shaking, although that shouldn’t have been a surprise. Whenever I’m doing something new, my hands shake in a way that seems like they want to remind me I’m anxious, even though I already know.

A few minutes later, the bus came around the corner, I held my arm out and it stopped for me. After showing my ticket, I sat down. And that was that. I was on a bus – on my own. 

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Achievements can be so subjective. For some people, getting on a bus is nothing, but for me, that was huge. Not only was it me getting over a strange fear of the bus and the likelihood of the motion making me feel unwell, it was somewhat symbolic in my journey of recovery from burnout. This time last year I’d only leave the house for school, and most of the time I couldn’t even walk myself there, relying on my mum or dad for a lift. It’s not just ‘getting on a bus‘, it’s doing something new, something I’ve never done before, alone. I’ve got to say that I was pretty proud of myself! It was easier than I thought it’d be, and I felt the need to send my mum a picture of proof, a sort of “Mum, I’ve done it!”

This positivity doesn’t mean that my trip when without problems. After finishing shopping and a cup of tea, I found my way to the bus stop on the other side of the road, to go home. Again, I was ten minutes early and checking the timetable. A single bus arrived, and according to the timetable, my bus should have arrived then. Not being able to read front of the bus due to glare from the sun and glasses that aren’t strong enough, I got on and showed my ticket. Everything was okay…until I realised the bus had gone the wrong way.

Panicking quietly, I pressed the stop button and got off the bus at the next stop. Behind the bus stop was a patch of grass, where I sat down and – in tears – called my mum.

I have a strong sense of ‘wrong’. Other people might feel that if something isn’t completely okay it isn’t necessarily wrong, but for me it is. Getting the wrong bus, for me, meant that everything was wrong. The day was wrong and I shouldn’t have left the house, I shouldn’t have bothered. Even the things I’d been so happy to buy felt wrong. It was all wrong.

On the other end of the phone, my mum tried to calm me down and told me the only option was to walk back to the first bus stop. I knew this but clung on to some hope that there would be more options. I felt angry, not at my mum, but at myself for getting the wrong bus. I was crying, having a small meltdown on a small patch of grass, wishing that something else would happen.

After calming myself down just a little, I began walking back to the first bus stop – crying some more, mainly because I was just so confused by it all – and texted my mum, saying I never wanted to get the bus again and that I didn’t want to leave the house for the rest of the week. While that sounds melodramatic, I have a disorder that I’ll explain fully in another blog post called alexithymia. In short, I can’t really understand my emotions so all I felt was a cloud of confusion and negativity while I was desperate to get to my safe space, my bedroom. I wanted to be okay and at that moment, I couldn’t see myself leaving what was okay for a long time.

The correct bus arrived and once I’d gotten on it, I calmed down and called my mum to apologise for the anger from earlier and for disrupting her while she was at work. Reassured everything was okay, I hung up and continued the bus journey home. It was a slightly less relaxed journey than the way there but it was okay.

On reflection, it all actually turned out alright. Yes, I had a meltdown but I’m autistic – of course there’s going to be times when I have meltdowns – and that’s okay. It’s part of who I am. It might not be the easier part but being proud of who I am means I accept that they are, and always will be, part of me. For anyone curious, I will be doing the bus again but maybe once I’ve got some new glasses so I don’t get it wrong…