Some physical challenges I face living with autism

I have always faced struggles with physical coordination. Apparently this is common with autism. I often failed Physical Education at school, for example, because I couldn’t do somersaults or sit-ups, or demonstrate the required level of whatever other skill was being assessed at the time. I was not particularly interested in sport, but was that because of my poor physical coordination or causal of it? Probably both. I was always the last to be chosen for teams, which made me feel ashamed. I mean, I understood why, but I didn’t enjoy standing there forlorn and unwanted. I couldn’t throw or catch a ball, until I decided to practice in my thirties to improve.

I have never been especially fast. I will never win a race. But I’m ok at longer distances. Late in high school, I decided one year to run the cross country, and I turned out to be pretty good at it, coming in a respectable 7th or so. I felt it was just good self-management: I didn’t start out at top speed, like so many of the others, and then from about half-way along I started passing them all, still going steadily at a pace I could sustain.

My handwriting is not very good either. I can write, neatly enough that others can read it. But it is hard work for me. I print, rather than using cursive, because it takes me so much time and effort to write cursive. Towards the end of primary school, my teachers kept telling me I would have to learn to write cursive better before I got to high school. But when I got to high school, they took one look at my cursive and told me print instead. Ah, if only I’d known, I could have saved myself a lot of time and worry.

Writing for long periods really tires me out; my hand starts to cramp up, and my writing gets messier and messier. This has always been a problem for me in exams where I have to write a lot, and I almost always run out of time too. At school, I always wished I could have used a computer for these kinds of exams, but that wasn’t an option back then.

Samples of the author’s handwriting at age 44 during a 2 hour written exam.

I could never swallow tablets as a child. They always seemed to get stuck in my throat, causing me mild panic. My mother ended up routinely crushing tablets for me in a spoon and getting me to swallow the powder with honey. It wasn’t until quite recently that I have learnt to be able to swallow tablets, at least up to a certain size. Larger tablets still cause me trouble, and I always make sure I have plenty of water available in case I need it; they often still get stuck in my throat and need some flushing to get them to move. Capsules are worse than tablets for me (though many people have tried to tell me it’s supposed to be the other way around).

I’m not sure whether this is directly linked to my autism, or merely an indirect consequence of my poor coordination — and maybe also poor interoception?

I am asthmatic, and I have respiratory allergies to many things, including dust mites, cats and pollens. I am probably somewhat allergic to dogs as well, but I seem to tolerate dogs much better than cats (a good thing since we have a dog). Indeed, I think pollen allergies are a significant trigger for my asthma; I was fine for almost a decade when eastern Australia was in drought (the so-called “Millennium drought”), but a year after the drought began to break (and the resulting cloud of pollens began arriving in south-east Queensland, where I live) I had to use asthma medication again. Recently we’ve had several wet years in a row, and my asthma is close to the worst it has ever been. Exercise is also a trigger for my asthma — yet another reason why I don’t do much sport.

The author and his dog. (Ok, technically his wife’s dog…)

At least my allergies don’t seem to be life-threatening.

So, is asthma correlated with autism? This seems to be plausible but not certain.

At 178 cm tall (5’10”), I have always been skinny. Even when I was eating chocolate bars and ice cream every day as a teenager, my weight never even reached 60 kg. I’ve only ever managed to get it above that by working hard at the gym.

I sometimes wonder whether I might have an issue with fat absorption. Regardless of what I eat, I can’t seem to put on weight. People often tell me to eat more fatty food, but doing so doesn’t help. Actually, many people offer to give me some of their own body fat; unfortunately, it doesn’t work that way.

This also causes some non-physical problems. I’m surrounded by a culture that thinks fat is evil and thin is the goal everyone should be aiming for. I have to consciously reject the constant messages I hear — in the media, from other people — to stop eating foods that will make me fat, to eat less, to do more cardio exercise. Even training coaches at the gym always think I want lots of cardio to warm up before I start lifting weights. I really don’t. It will only cost me energy that I can’t really afford to waste.

Sometimes it’s hard to tell myself to ignore all these messages and just keep eating. But I know that I have to.

Unfortunately, I have plenty of physical food sensitivities and intolerances too. I have not been diagnosed with IBS, but my digestive system seems to behave in ways suggestive of it. I have learnt over the years what foods tend to upset me, so I avoid eating those things.

I also have a problem with the texture of food. Apparently, as I discovered from my research when going through my diagnosis, this is not uncommon for people with autism. As a child, my food had to be of a consistent size, shape and texture. Different foods could not be mixed, they must stay separate! I mean, I knew they would end up combined in my stomach, but I just couldn’t get past the feeling of the different textures together in my mouth. I definitely preferred foods with a single, consistent texture.

Cereal, for example — I had to eat it dry, because it was too challenging to manage the combination of wet liquid and crunchy bits. I still like it dry, though I have now learnt to eat it with (soy or oat) milk, which means I can eat it a bit faster (though it also means I can’t eat quite as much, a concern for me since I’m always worried about getting enough energy intake).

Steak, for another example. My parents eat steak very well cooked. I’m talking about an Australian “well done”: completely cooked throughout (some might even say overcooked!), no pink left anywhere, somewhat burnt around the outside. So my childhood experience of steak was of a tough, chewy substance that tasted bland or burnt. I did not enjoy eating it. I also don’t like the mix of textures with fatty bits, let alone any gristle or anything else. It will therefore not surprise you to know that I was never a big fan of steak. But again, in the last few years, I have been learning to eat steak cooked differently — more of a “medium”, or a thin barbecue steak cooked for only a few minutes — and I am slowly learning that I can sometimes like it. I still prefer kangaroo or a very lean beef steak, though, because I really don’t like the texture of fat.

I also dislike cutting up raw meat. I dislike the feeling of the texture of the meat in my hands, and even more so the mixed textures near bones. I want to cut off or out anything that is not actually meat (fat, tendons, bones, gristle) because I know I can’t stand to eat them, so it takes me a long time to prepare meat for cooking. A sharp knife is usually needed, or even a serrated one, which is a significant risk for self-injury given my poor physical coordination. And the smell of raw meat is overwhelming (and can stay on my skin for hours, no matter how many times I wash it off).

Egg — let me tell you a story about egg. I never liked eating egg as a child. The smell is so intense (and frankly sulphurous), it looks yucky, and the texture was unpleasant to me. I couldn’t bear the thought of eating it, boiled or fried. I could only eat egg when it was “disguised” by being mixed into cakes.

But here’s the thing. I loved a particular dish my mum used to make for me that she called “peggy meat.” It was homogeneous, soft, yellowish, and slightly salty. (Can you see where this is going?) Then one day I paid attention to my mum making it, and she started with an egg! My mum knew I didn’t like egg, but here she was putting egg into my “peggy meat”! How could she? (How had I never noticed before?)

Of course, what I learnt that day was that “peggy meat” was really scrambled egg. I felt betrayed. I never wanted to eat it ever again. And I didn’t, for a very long time. I only decided to give it another go quite recently, in my 40s, and have discovered (surprise!) that I do still enjoy eating it.

You see, the autistic child you know who is a “fussy eater” is not that way because they don’t understand how food works, or don’t realize it’s all going to end up together in their stomach. They may know that perfectly well. But it doesn’t feel pleasant to eat it that way. People seem to think it’s just that the child is being silly and fussy. It’s not. Autistic children are nothing if not logical. If they’re being fussy about something, food or anything else, there’s definitely a reason. Look for it. Ask them about it. Don’t dismiss their concerns, which reduces their agency. Try to find out what the problem is, and see if you can work together with them to find a solution.

My vision is not great, though it’s okay when corrected with spectacles. I was probably always doomed to be myopic; both my parents wore glasses, my father’s quite thick (until he had corrective surgery in his 60s), and I spent a lot of time indoors as a child. I’m now old enough that presbyopia is becoming a problem too. I changed to multifocal (graduated focal length) lenses a few years ago and I really like them. I can’t wear contact lenses; I tried once, but my eye-closing reflex is too fast and strong for me to get them onto my eyes.

I’ve also had some trouble with serous retinopathy. I first noticed problems during a practicum when I was a student teacher in 2005. It got worse over the years; every time I thought it was stabilising, suddenly it wasn’t. Finally, something else happened that led me to believe this problem was at least partly due to stress: at the end of 2018, I resigned from a middle leadership position and dropped back to four days a week. As my stress reduced, so did my symptoms. I have since learned that an uncle on my mother’s side has also had retina issues apparently caused by glaucoma, and that glaucoma is common in myopic people, so there’s probably also some hereditary contribution. But there is much active research about possible links between autism and retinal differences.

My hearing is also not great, but this is probably at least somewhat due to listening to rock music using headphones in my teens. I take much better care of my ears now than I used to, using earplugs whenever I’m in a noisy environment or mowing the lawn or anything like that.