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.

Language: Identity vs Person

Language is a key method of communication, and whether it’s spoken, typed, written down or conveyed by other means, the same message is still getting across. When it comes to disability, and more specifically autism, language gets a bit complicated. There are two main types of language used in relation to autistic people: person-first and identity-first, and not many people are sure which one they should use.

Person-first language is basically putting the person before the other language, and in this case is to say a ‘person-with-autism’. A lot of people believe this is what autistic people prefer, with the theory behind this, even if applied subconsciously, being that the person is ‘more than their autism’. This language is usually applied to be polite, or at least attempt it, because you’re showing that a person is more than the label. However, there are a few reasons why it might not be the best choice.

To begin to explain this, I’m going to use a simple linguistic comparison. When we’re talking about illnesses, we use person- first language. We say ‘a person with a migraine’ or ‘a person who has a migraine’, instead of that person is the migraine, because they’re not. They’re more than the migraine. However, this doesn’t work for autism. As I covered in my last post, it’s a neurological variation not an illness that should be cured. (I am hoping to cover the idea of cure culture in association with autism soon so this is all I’m going to say about this for now).

The second key argument is we, the general population of autistic people, don’t prefer it. It was one of the first things I noticed when becoming part of online autistic communities and quickly agreed with. The use of the opposite of person-first language, which is called identity-first language, seems to be the generally preference of autistic people. I can’t speak on behalf of every other autistic person, which brings us to around 1% of the total population worldwide, so I’m going to turn to a few sources to show this.

There have been two recent surveys run by autistic people that I have taken part in. The first was completed this year in January and was run by Cas, (who can be found here,). This survey had questions on language preference, self identification and diagnosis, among other things, and was answered by around 1000 people. There were two particularly interesting results from this in relation to language preference. The first was about describing in relation to the autistic spectrum

More than one option was allowed here, which is why the figures don’t quite fit for the 1000 people who answered, but you can see that “I’m autistic” features at number one, “I’m on the spectrum” at number two and “I’m Autistic” (as some people prefer to capitalise) at number three. As more than one option was allowed, those who don’t mind capitalising or not capitalising, like myself, probably chose both (and this was confirmed by Cas in the post releasing the survey results). Looking at the exact figures, that around 66.3% who preferred “I’m autistic”, or at least feel comfortable using it and do so regularly.

The second data from this survey, was a question directly link to this post – what language do you prefer? As you can see on the graph below, the top answer was identity-first, with two results before person-first appears. This survey does seem to show a general preference towards identity first language.image

One source, however, isn’t enough to get an idea of the general community. Another autistic blogger, Sabrina (who can be found at here), also recently conducted a image008survey which looked into physical disability, neurodivergence and autism but included a question about language preference. I was one of the around 1000 participants and was interested to see the results, which showed 71%  of those who took it preferred identity-first language, 19% had no preference and just 6% preferred person-first language (with the other percentage of those taking the survey, presumable based off of the other questions in the survey, being family members of autistic people etc.)

(I would like to thank both of the above bloggers who both responded to my requests quickly and kindly allowed me to use their surveys and graphs in this post. I have provided links to their blogs, and the exact posts about the surveys, above).

The National Autistic Society also published findings that autistic adults like identity-first language and have since shifted the terms used in their campaigns accordingly. So that’s two surveys run by autistic individuals and one by a major UK autism organisation.

Another thing I would like to cover quickly is language in relation to the current diagnosis. The DSM-V, a common diagnostic criteria (and one that other criteria have been based off of), uses the term ‘Autistic Spectrum Disorder’ or ASD for what would previously have been different ‘types’ of autism (again, something I plan to cover in the future!). What this means for language is that some people, as you can see in the first survey, use the terms “I have ASD” or “I am on the (autistic) spectrum”. I’d personally use the latter, if I were to use this language, because it’s the case of ‘have’ vs ‘am’. I just feel it’s necessary to remember that these are terms that some people use, but they still have ties to identity-first and person-first language.

Obviously some people disagree and prefer ‘with autism’ or ‘has autism’. I’m never going to force my language preferences on them and I respect their views completely. If they were to correct me on language regarding themselves, I would use the terms they prefer when referring to them.

Despite this, I feel it’s best to use the generally preferred term of ‘autistic’, until you get the opportunity to verify it with the autistic person. Trust me when I say this: we – the identity-first language users- will be impressed if you use ‘autistic’ straight away. The simple reason for this is that this preference – which has been proved by autistic individuals and organisations alike – is often ignored within the generally neurotypical community and even groups supposedly there to support autistic people.

I’d like to think I’ve successfully identified that the majority of the autistic community prefer identity-first language, but I think it’s important to look at why identity-first is used by the majority of the autistic community to help understand its use.

It’s really about implication, which to me is highly amusing and ironic as some autistic people, including myself, struggle with understanding implications. In a way it’s linked to the ideas from earlier as to why the general community is against person-first language, but reversed. It comes to the idea that autism is not a disease or illness, one that a person has and can easily go ‘My autism ends here, and I start here’. Back to the migraine analogy, someone can say “My migraine causes pain but it doesn’t influence what my likes and dislikes are”, which is sometime you can’t do with autism.

Chances are you’re part of the 99% of the population that isn’t autistic, that just probability. You’re allistic, meaning non-autistic, or neurotypical (as opposed to neurodivergent, which encompasses autism, along with other things like ADHD, Tourette Syndrome and OCD). And my sister is just like you, so let’s use her as an example here.

If I were to take away her sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.

The ‘detaching’ from autism, for me, seems ridiculous. You can’t detach my neurotypical sister from her neurotypical brain because the fact that she’s neurotypical influences how she experiences the world around her, in the same way that you can’t detach me from my autistic brain.

I do understand that the wide use of person-first language seems to come from a place of kindness and just not realising that there’s a preference to identity-first. I simply feel that understanding that a preference exists, and shifting your language according, is an important step to autism acceptance.