When Food Is A Challenge (July In Photos)

I have struggled with food for as long as I can remember. One of my earliest food related memories – I can’t have been older than eight – is of reading an article about someone who needed IV nutrition and/or a feeding tube because they were unable to eat by mouth and I vividly remember showing my Mum and telling her that I wish I could do that, I was that distressed by food. I dreaded meal times because I found food stressful. As an eight-ish year old, I obviously didn’t understand how difficult this lived experience is for people but if there ever was a way to just fulfil your nutritional needs through just a pill or an IV rather than food, I would choose it in a heartbeat. The only way I actually enjoy food is when it satisfies a sensory seeking stim (I’ve talked a little bit about this in my recent post about my current stims).

For a long time, I didn’t understand why I found food so difficult and I was labeled as a “picky eater” (which is a phrase that I think should be struck from all human languages and if you ever want to see my deepest levels of fury, I actually dare you to use it in front of me) and it was a source of frustration for everyone in my circle. No one was intentionally unkind about it – I am a hundred percent sure that most of that frustration was about me missing out, both on a nutritional level and on the enjoyment of food that they were all experiencing – but I don’t think that that didn’t impact me on some level. Everything always felt too complicated and overwhelming to me: all of the tastes, the textures, the dry things getting wet (yes, I am an autistic person who separates their food on a plate), and so on. All of that is incredibly stressful to me so plain, simple, separated foods remove (or limit) that stress and allow me to engage with food at some level. When food becomes stressful, I struggle to swallow, my gag reflex becomes super sensitive, and sometimes I can’t even be in the same room as food; I will just avoid it rather than engage with it but it’s more like a fight or flight reflex than a choice. I also have terrible interoception (I don’t feel or recognise signals that I’m getting from my body about hunger, thirst, muscle tension, etc), which isn’t uncommon with Autism, and so I often don’t realise I’m hungry or in need of food until I can’t stand up or I’m shaking from the lack of it and by that time, I barely have the energy to find myself food. All of these things make it very difficult to eat healthily and it’s something that I really struggle with, something that I constantly feel frustration and shame and self-loathing about. The Autism diagnosis helped all of us to understand and manage the situation better but it still an ongoing, exhausting battle.

Eating disorders also very commonly occur alongside Autism: the current research suggests that 20-35% of people living with anorexia are autistic or have “elevated autistic traits” and ARFID is much more commonly found in autistic people than in allistic people: one study found that 44% of ARFID cases were those of autistic children and young adults (x). I’ve never been been diagnosed with an eating disorder, although I have done some research into ARFID (pursing that is something I’m interested in but other health issues have been much too present to focus on that, plus the treatment is complex and very likely not accessible through the NHS (even if they say it is – as soon as I hear “multidisciplinary team required” within the NHS system, I’m immediately doubtful based on my history with them). Having said that, I have had many periods of disordered eating throughout my life, many of them connected to this lifelong difficulty with food. When I was twelve and first dealing with unexplained chronic illness, I was so nauseous that I was practically surviving on water and Rich Tea biscuits because they were basically all I could tolerate. My tolerance and interest in food is also definitely affected by my severe depression – currently diagnosed as treatment resistant – and I could have easily given up eating altogether if it hadn’t been for my Mum and my therapist at the time: there were several occasions where we had to put an agreement in place that I would eat at least one meal a day (or throughout the day if that’s what it took) and keeping to that agreement was the only reasons I ate at all; with my depression so all-consuming, the stress of food was overwhelming and, since I got no enjoyment out of it, I just didn’t see the point until that agreement was negotiated. Not that I’ve ever really talked about it to anyone but I’ve also had periods of intentionally avoiding food and starving myself, starting as young as eleven I think, in part at least because the freedom of not having to deal with the stress around food was so incredibly freeing (yes, I am aware that this is not healthy and I absolutely do not endorse it). So my relationship with food is very, very complex and multilayered and unfortunately, due to my neurodivergence, mental health issues, and physical health issues, it has just never been a priority to get real help with. The help I have tried has generally just made things more complicated.

The fact that, by all accounts, I seem to be managing a healthy – for the most part – diet while trying to manage all of this is somewhat of a miracle. There is always space to improve, of course, but I do recognise that things could be – and have been – a lot worse. Making improvements is hard work and often very overwhelming – and too much if I’m already somewhat overwhelmed – but it is something that I do think about a lot, for both positive and negative reasons.

Now, after all of that, let’s get to the prompts…

1. A Cup – I’m not a tea or coffee drinker (although I will occasionally struggle through coffee heavily supplemented with chocolate in social settings) so more often then not, I’m drinking juice or water (or Red Bull, which we will be revisiting).

2. In The Fridge – This is an overwhelming space for me with food generally being a difficult experience. And often, knowing what’s in something can ruin the things I do like and can manage to eat. So that is an ongoing struggle.

3. Something Savoury – During the periods of my life where I’ve been very unwell and unable to eat much, I have relied on rice cakes (sometimes with butter) to keep me going and they’ve been an excellent staple ever since that first early discovery. I still eat them a lot because they’re so simple and undemanding, which is great when I’m feeling overwhelmed by food. I actually lived off of these when I first visited Nashville because I was so busy and so tired and so overwhelmed and stressed out by all of the new foods and/or unexpected food combinations. That was very stressful because I’d thought that I’d be okay on the food front but most of it was too complicated for me (to be fair, that’s not on Nashville – food is complicated for me but I’d expected it to be less stressful than some of the other places I’ve travelled to). I don’t know what I would’ve done without the rice cakes and now they always remind me of that experience (I have been better prepared ever since, I swear).

4. Something Crunchy – Thank goodness I have have always been a fruit and vegetable girl. I know some autistic people who struggle to eat them, making it very difficult to maintain a healthy diet, but fortunately for me, I have always loved fruits and vegetables. On the rare occasion that I do go a day without them – if I’m travelling or having to eat on the go – I’m already craving them when I go to bed and will likely plough through them the next day. I love apples, particularly Pink Lady apples, but they must be crunchy and not fluffy; I cannot eat a fluffy apply.

5. A Vegetable – Again, I’m so glad that vegetables, on the whole, have never been an issue for me (even when my Granny would boil them to hell and back, said with all the love in the world). If it were possible, I could absolutely exist just on vegetables (and fruits).

6. A Spoon – I have no idea where the phenomenon of an autistic preference for certain cutlery came from, how it became a concept of its own beyond an individual preference for specific pieces of cutlery due to sensory reasons, etc. But developed it has and now everyone seems to have their ‘safe spoon.’ I personally don’t have a specific spoon because I think, over the years, we’ve curated our cutlery drawer so that almost everything is ‘safe’ for me to use but I do have cutlery that I prefer: small spoons like these and soup spoons, for example. Unless they’re made of silver because then I’m using my hands or going hungry if that’s not possible or appropriate: the sensory experience is horrendous to me.

7. A Meal on a Plate – One of my safe meals, one of my comfort meals, is oven chips, chicken nuggets (very stereotypically autistic, I know), and lots of vegetables. It’s the safest of safe meals and this is what I can eat if all else fails (apart from a handful of complicated situations).

8. A Drink – I have mentioned my love of Red Bull on this blog so many times! I think I talked about it most recently in my post about stimming and it appears in my social media content so much that they should sponsor me (and the jokes about this have only increased since a Red Bull van stopped on my street a few weeks back). My favourites are the White Peach (apparently the biggest seller in the UK right now), Juneberry, and Grapefruit and Blossom (hot pink, blue, and purple respectively). At this point, I really doubt that the caffeine is having any effect at all (some people with ADHD just don’t respond to caffeine and in others, it even makes them drowsy instead) but the cold and fizz does help, even if it is a placebo effect. But I love the taste and it’s one of the few examples of fizz that make me feel good rather than overstimulated.

9. A Homemade Meal – Stir fry is a staple meal in my house (and we always take noddles with us if we’re going away) because, even though I usually struggle with foods mixed together (yes, also very stereotypically autistic), there’s something about my family’s recipe that makes it manageable – (maybe because it’s a marinade and not a sauce?) – and is usually a safe food, unless an ingredient is switched out and changes the taste because I usually can’t get past that, especially if I don’t know beforehand.

10. A Treat to Share – I love Chocolate buttons. Eating Cadbury Chocolate Buttons is one of my favourite sensory experiences, the way cold chocolate snaps and how it melts on your tongue. There are very few textures, especially in food, that are pleasing to me but I love this one – I also talked about this in my stimming post. My Mum and I always have a packet of these in the fridge.

11. A Baked Good – A love triple chocolate cookies (the mixing of the chocolate is just so good!) but they are far too addictive, particularly from a sensory seeking perspective, to just have at home (not to mention that Daisy once managed to steal the packet out of a shopping bag only to go on to unwrap and eat all of them, resulting in a very expensive vet visit, which we refuse to repeat and therefore chocolate doesn’t even touch the counter now before it’s squirrelled away under lock and key). But my Mum picked some up as a surprise and I was indeed surprised and delighted.

12. I Made This – One of my friends used to bring cheese and tomato pitta bread, kind of like folded over pizza, to school when I was a teenager and I just got absolutely hooked. Even now, it’s one of my main lunches or snacks and it’s definitely a comfort food of mine; it’s reliable and safe and always tastes good (unless you add different cheese, which I – and nobody in my family – will never do, given my pretty dramatic responses to the change of ingredients).

13. Breakfast – Throughout my childhood, pancakes were often a family breakfast on Sunday mornings so they’re very nostalgic for me. My family don’t live together anymore and we don’t necessarily have them on a Sunday because both me and my Mum have very flexible and/or weird schedules so we just have them when we have the time and ingredients but they’re a food that always feels very safe and comforting and just nice to eat. They never disappoint.

14. A Slice – Toast has always been a standard breakfast in my house and, as much as I wish I could like brown bread, I continue to try, just to return to white bread; the taste and the texture just don’t work for me. I could probably live on white toast, rotating between jam, honey, chocolate spread (if I’ve had a really bad day), Vegemite (yes, I will be dying on this hill), and just butter. It’s so simple and reliable and tastes good in a very calm way and it’s just a very solid safe food.

15. A Pantry Staple – As I’ve already mentioned, we always have noodles in the cupboard, or the suitcase if we’re away. Noodles are another staple in my diet and if everything falls apart, I can eat them plain and I’ll be fine. They’re a really solid safe food, unless unsafe things start getting added – sometimes adding new things can be a good way of trying new things but it also runs the risk of making a safe food unsafe and limiting my diet even further.

16. A Jar – We had a cherry tree in the garden when I was a kid and we’d always make jam that lasted us all year round (and longer!) and I absolutely loved it: it was something I could eat with practically everything. We don’t make our own anymore unfortunately but having it now always makes me so nostalgic and I never, ever get sick of it.

17. A Food You’ve Never Tried – As I’ve said multiple times now, I really, really struggle with food and if there was an option not to, I would take it. And as hard as it is, being autistic and living with all my other mental health, physical healthy, neurodivergent stuff, etc, I think if I could change anything, it would be my issues with food. It’s so limiting, nutritionally and socially, and I find it deeply distressing a lot of the time; it’s also incredibly rare to do anything relating to food, with other people, without it being commented on, joked about, or judged. I think people just don’t understand it and consider it the same as being picky (which I personally think is a stupid word and something we should stop saying, especially in relation to food) without ever considering the amount of distress behind it and the amount of stress they’re causing when they could just not say anything. Fortunately my family is great about it and I do have some friends now who always do their best to make sure I’m okay if we’re in a food-related setting but it still causes me daily anxiety. Would people think more about it if they imagined a child asking their parents if they just not eat food anymore, if they could take a pill or have an injection instead because food felt so stressful? I don’t know. Anyway, back to this prompt. As much as I hate trying new things – as a kid, I would try new things under the table because I hated having my reaction observed, in part at least because I felt like I’d failed if I didn’t like it – I do continue to try and expand my very limited diet, usually building on things that I already know I like. This approach actually failed this time though: I tried a new type of ravioli and found the taste and texture so difficult that I couldn’t eat normal pasta for several days. It’s fucking exhausting and I hate it. I would love to eat less meat – even though my meat consumption is already pretty limited – but I already find it so hard to eat and have so few things that I can rely on to get what I need. There are so many sensory struggles that it feels impossible but I haven’t given up, not yet anyway.

18. A Colourful Food – Fruit salad is one of my favourite things to eat and I could probably have it for every meal, despite it being a mix of foods, which I historically find difficult. I do sometimes struggle with the textures and combination of textures but given the composition, I can just separate any of the fruits that aren’t working together for me that day, which I appreciate. Fortunately fruit is a good food group for me so, again, there are lots of manageable options.

19. A Bowl – I’m pretty sure this meal was adapted from Spaghetti Carbonara, a way for me to eat a very similar meal as everyone else but without the bit that I found difficult: the sauce. I’ve always found the texture of pasta sauces to be a struggle – it’s one of my earliest food memories – so most of the time I just eat pasta plain and I’m content with that. I don’t mind the added pancetta and vegetables but I did have to remove the garlic bread from the bowl (so it was no longer touching the other food) as soon as I took the picture.

20. A Circular Food – As I’ve already said, plain food is the only food that I can really eat and definitely the only food that I can enjoy. This is one of my favourites: a margarita pizza from a family run place in Holborn, super close to where one of my parents lives; it is the best pizza – and consistently the best – ever. I actually don’t understand why you would add things to pizza when just this tastes so good.

21. Something Iconic – We have the best fish and chip shop ever (and I will die on this hill) not far from where we live and they do consistently amazing fish and chips (although I tend to have chicken nuggets more often than not, chicken nuggets being an easier food for me) and they also do really good strawberry milkshakes. They have been so lovely over the years when I’ve been really unwell, basically living on the blandest of bland food, and would make strawberry milkshakes especially for me since that was only thing I could tolerate beyond water some days.

22. A Comfort Food – My family have always made toasted chicken sandwiches in a slightly weird, pretty inefficient way – no sandwich toasters for us, not when you can use weird pans that you already own – but they taste so simple and so good and I’ve been having them forever so they are the ultimate comfort, nostalgia food.

23. A Packet – I spotted these at the train station and I haven’t had them in ages. They weren’t as good as I remembered them but I appreciated the sugar hit.

24. A Sauce – I can’t remember a time before ketchup. Having said that, it only goes with certain things (although my Dad would have disagreed – he put ketchup on everything) and I’m still vaguely haunted by the different colours of ketchup that were around in the early 2000s.

25. On The Bench – I’m pretty sure one of the reasons we moved into this house was because of how much my Mum loved the kitchen, especially the kitchen bench and the double doors into the back garden.

26. From The Freezer – Given how horrendously hot it has been this summer, ice cream has been a consistent and deeply appreciated presence in the last month. We usually have strawberry ice cream in the freezer since it’s something that I can manage even on the days when I have trouble swallowing but we’ve been taking full advantage of the summer options like these Cornetto ice creams and the Ben & Jerry’s Cookie Dough Ice Cream Sandwiches; they are both so, so nice.

27. A Favourite Mug – Since I don’t really drink tea or coffee (and hot chocolate only occasionally), I don’t have a favourite mug to drink from but I bought this mug as a pen holder and I still love it all these years later. It’s just so cute!

28. Utensils – I need to replace these but I love them; using them always entertains me. Because I’ve always been super sensitive to heat (I’ve been accused of eating my dinner “stone cold” on so many occasions but it’s always seemed warm to me), these have been super useful for getting things out of hot trays etc (also great for the toaster when they’re NOT so wrecked).

29. A Red Food – Apparently I eat quite a lot of red foods because there were multiple options for this photo but I decided on the strawberries because they tasted the best.

30. A Cookbook – To be clear, I am not able to make this! But my family used to have this as a summer breakfast and my Mum remembered it and decided to dig out the recipe. This is the French Toast Stuffed With Peaches from the Sydney Food by Bill Granger recipe book and while I do struggle with how soggy it can get (changing the proportions of brioche to peaches and yoghurt helps with this), the mix of warm peaches and cool vanilla yoghurt is so pleasing on a sensory level and it also tastes really good.

31. Something Messy – One of my favourite family traditions was getting the make your own croissants: you unroll the pastry, add the ingredients you wanted (ham and cheese or chocolate have always been my favourite choices), and then put them in the oven, if you’ve never tried them. Getting to choose the filling has always made them a great option for me – I’ve had them plain in the past when food has been even more of a struggle than usual – and it’s always nostalgic to do, rather than feeling like a drag – how food usually feels to me. We’ve always joked that croissants are not something to eat around someone you want to impress but I think these ones aren’t quite as messy as some that you can just buy…

So I hope that this was somewhat helpful, that it provided some insight into what food and eating can be like as an autistic person. Obviously this is just my experience, just one experience in the autistic community, but hopefully this has highlighted some of the issues that autistic people deal with around food, even if the specific foods differ. I just thought it was a good opportunity to share some of my experience, some of my thoughts and feelings, and maybe create the opportunity for people to start thinking more deeply about this stuff or start having conversations if they haven’t done so yet. So I hope that there was something in here for everybody. And if you struggle with food too, I hope you know that I see you and that I know how lonely it can be. You’re not alone in it and you never will be.