Just last week, in my facebook memories, there appeared a status from a year ago. My husband and I had been having a conversation, prompted by something we’d seen on the TV, about how well we slept. I had said at the time that having a husband who pulled the bedsheets and altered their tension or made wrinkles in them was definitely detrimental to good sleeping.
A year ago I didn’t have the first clue I was autistic. I had never heard of sensory processing disorder or any of these sensory sensitivity issues. But I knew, absolutely knew, that one wrinkle in a bed sheet was a disaster! Always had been. Bed sheets should be flat and smooth, with even tension throughout. Anything else was bad. I’ve always been a bit “princess and the pea”ish about where I’ve slept, arranging things so I can’t feel wrinkles, and making sure nothing felt “wrong”!
And it’s not just about bedclothes. Right back to my childhood I remember things that made me very very uncomfortable. I grew up in the 1970s, when polo necked jumpers were very popular – I remember pulling at the necks, trying to make them bigger and looser to stop the feeling that I was being strangled. It was even worse when they were made out of wool and to add to the strangled feeling there was this tearing cutting feeling everywhere it touched my skin, as though I’d fallen into a bramble bush or something. I remember being desperate to have a pair of jeans because they were fashionable, but then feeling utterly terrible when I tried to wear them (this was before lycra and stretch made such things wearable) and they felt like they were cutting me in half at the waist.
I also remember, as a child, being in a school play and having to wear make-up as part of my costume. The teacher put lipstick on me and instantly it felt absolutely horrible. Totally disgusting. I told the teacher this and she told me that I’d understand when I grew up and that grown up women loved lipstick and wore it every day. I had a brief flirtation with the stuff in my teens, but it still felt, and smelled, and tasted, absolutely vile. I think I wore foundation twice, before chucking it in the bin because it made me desperate to wash my face because I felt so horrible and dirty and it smelled so bad. I’m 45 now, and I still haven’t become that grown up woman that the teacher told me I would, and now I know that I never will, and the teacher was wrong.
Another of the “grown up woman” things that I ditched in my 20s was the bra. I can bear to wear a wide strapped sports one for the duration of a run, but while I’m actually running only. If I try to drive home after a race or training run still wearing it then I start to feel sick, the cutting pressure across my back, the feeling of the straps digging in, like someone’s trying to slice my skin open. I haven’t worn a bra in daily life for over 20 years, and I never shall again.
The same is true of anything made out of lace. I developed a certain tolerance as I grew up and things did improve as fabrics became better, but still, when I buy an item of clothing, I FEEL it. I will choose the thing that feels good over the thing that LOOKS good EVERY TIME! I also spend time every morning when I put on my socks, lining up the toe seams so they are symmetrical and perfect. I know there are some people with sensory issues who don’t like to wear socks at all – I am not one of them – the feeling of bare feet on the soles of shoes and sandals is not pleasant for me – I would rather wear socks. I am a person who wears socks with sandals, and I don’t care how many stupid memes tell me it is unfashionable – it is comfortable, and that is way more important.
I also mentioned, in The Discovery, how I cut the labels out of my clothes. I don’t know why people put labels into clothes, but every time I buy something new I take it out of the bag and go over it and remove the labels. I assumed that everyone did this, since it is such a routine and normal part of my life and has been for as long as I can remember. I then wash it before I wear it because the stiffness of anything that is likely to touch my skin is horrible. I don’t like the scratchy feeling or the way new clothes smell. I am a person who exists most happily in old t-shirts, elasticated-waist jogging bottoms, and fleeces. I can dress up smartly for an evening, and sometimes do, but it is always temporary, and the posh clothes are off the instant I’m back in the door.
I have spent years wondering how people can go to work all day in a dress, with tights, and high heels. I have marvelled at how they endure the pain of wearing a bra day in day out. I have been overwhelmed by their toughness, their resilience, and their fortitude in the face of what must be so devastatingly painful, and I have long known that I could never be like that. I had a job once that required me to wear a suit. I lasted a month. Just getting dressed for work each morning was so traumatic that I was in tears every day before I even left the house. I eventually went off sick from that job and never returned to it.
In the same way that I have to remove labels from clothes, I also feel a need to remove stickers from books. If I’m reading a book and it has a barcode sticker with an ISBN number on the back and I can feel the raised sticker as I hold the book it distracts me from what I’m reading to the extent that I don’t take the information in. Just as with clothes, I get home from a bookshop and remove anything that might interfere with the smooth surface. Where other people might not notice, I do.
And I was astounded to read, in one of the many books I’ve been reading on autism, about the autistic woman who, when kissed by anyone who left a slightly damp patch on her cheek, instantly felt the need to wipe her face. I am exactly the same. There feels something so terribly wrong, like the surface has been disturbed, and I need to straighten it, to stop the feeling of blemish, of cold and wet.
I am also sensitive to what is on my fingers, and, for many years, have washed my hands in such a way that I thought I had some sort of obsessive washing tendencies, but I realise now that the cause of my handwashing antics is actually to do with sensory issues. I cannot BEAR to have sticky or greasy fingers. Given the option I will eat cakes or pastries with a fork to avoid touching them with my hands, and this isn’t, as I’d wondered, a germ-related thing, but the dislike of feeling sticky or dirty. If you see me eat a bag of crisps then I will most likely wipe my hands on my trousers after every single crisp. If I’m in a place where I can, I’ll also get up and wash my hands afterwards. If I’m out, then I will do everything I can to eat a cake from the packet without touching the cake – I’m quite skilful at it. And when I’m in a position when I can’t do any of these things, it uses extra energy, extra resources, and makes me more tired, more likely to go in the direction of meltdown, and so on. I’ve long marvelled at people who seem so unfazed by eating with their hands, or by people who seem, so effortlessly, to put their hands into mixing bowls when baking, or who think gardening is therapeutic, yet it involves touching soil, which is, for me, a very unpleasant sensation.
I’m the same with crockery and cutlery. My husband is quite used to me sending mugs or knives or forks back because they “feel wrong”. He doesn’t have the same sensory issues that I do (if anything, he is undersensitive to such things), but he will wash them again and again, to make them right. I have, on occasion, been home alone and “my mug” has been greasy in the sink and I have spent all day without a cup of tea as a result. This is what happens on my worst days. On days when I have more energy I will steel myself to wash the mug, and then wash my hands afterwards until they’re back to how they should be, and how they feel right.
It’s a constant balancing act, but what’s so extraordinary is that these things have all been part of my life for decades and I’ve never had the faintest idea why.
Until I started reading books about autism and sensory issues!