Living In My Skin

(I wrote the first half of this before I knew what propioception was. I’ve left it as it is though because it describes well how it feels to have poor propioception - and because it shows how close I was to describing a physiological mechanism I knew nothing about! Which is surely evidence enough that these symptoms and being autistic are not just something I‘ve made up or imagined.)

It’s been cold today. I’m running my foot along the radiator behind my chair. It begins to feel very nice, in a way it doesn’t normally. It’s like that nice relaxing feeling you get during a massage. Your skin is a sensory organ. As an autistic person, who sometimes has sensory issues, I think my skin is sometimes playing games with me.

I think we hold a lot of tension on the surface of our skin and deeper into our muscle tissue. Massage works through pressure and touch. How does our body measure pressure? Do we have nerve endings inside our body or is it through our skin? I can feel the hardness of my bones through my skin but my bones aren’t sensitive to touch, neither are my muscles. But I know when my muscles are relaxed and when they’re not. Maybe my brain can measure the blood flow to my muscles. Maybe my skin can measure pressure both inside and outside of the body, maybe it can measure hardness and softness inside and outside the body.

What I’m trying to figure out is how do we know what’s going on inside our bodies? I’m a very tense person. I find it difficult to let go of tension in my muscles. I remember when I was learning to drive my thighs would clench up, when I realised I was doing it I managed to relax myself. I noticed this in the autistic boy I looked after. Certain muscles in his body were very tense.

I know when my muscles are tense (sometimes) and when they are relaxed (sometimes). Maybe the body has a method for sensing blood flow to your muscles. If this mechanism isn’t working properly how do you know if you are tense? I think you are habitually tense this sense made fade into the back ground.

It makes me think of the question about knowing where you are space. Like when I’m in the supermarket and I think people are going to walk into me or walking into doors and furniture at home. Just this inability to sense my body and where it is in relation to everything else. Wouldn’t this be enough to make someone tense?

I love pressure being applied to my body, I love being squeezed. When I was at school people where often scared of going to the tuck shop. There was no queue, it was like a mosh pit. I used to hang around the tuck shop volunteering to go up for people. Or sometimes I’d just beg a penny off someone and then enter the crush until I got pushed to the front when I would buy my coca cola bottle. I think that’s why I liked scrapping when I was younger, I didn’t ever hurt anyone, I just liked the rough and tumble.

My sense of touch is also distorted. I often don’t notice things like cuts and bruises, but something like a crease in my sock will drive me crazy. Either I am hyper-sensitive or not sensitive at all. As a child I was very sensitive to different materials. I didn’t like man-made materials. I think it’s the electric static that comes off them and also they tend to be itchy and scratchy.

This isn’t a problem now I can choose my own clothes, but at the time it was a nightmare. A refusal to wear certain clothes was simply not acceptable, after a lot of shouting and threats of physical violence the biggest person won. I know they thought I was just being awkward or difficult. They often accused me of doing things just to be different. I was different, I didn’t want to be though.

I think my younger sister used to copy this behaviour. At the time I didn’t understand her strange behaviour or that she might be copying me. It used to annoy me a lot. I remember her walking into a lamppost once. She had seen it but she pretended to be looking somewhere else. I don’t think she expected to hurt herself so much. She got a big bruise on her forehead and I got told off for pointing out she had done it on purpose. Being an autistic child I didn’t understand that people copy each other’s behaviour and sometimes it is even a form of flattery.

My sensitivity to touch is not confined to clothes, I also used to have a problem with touching other people‘s skin. I remember one girl at school who always had cold clammy hands. I would do my best to avoid holding hands with her if we were playing a game like ring a ring a roses. Unfortunately my younger sister also became a victim to this. Something in me labelled her as different, physically she didn’t look like the rest of us (we were all blonde with blue eyes and she had chestnut hair and hazel eyes).

Sometimes I wouldn’t want to sit next to her in the car in case our skin touched. We were a large family and us four kids all sat in the back of the car. I would object if I had to sit next to my sister, I didn’t have the social imagination to realise how this made her feel. Of course I was told to stop being silly. And my other brother and sister returned the favour by complaining loudly if they ever had to sit next to me. Memories like this make me feel very sad. It didn’t have to be this way. Thankfully this skin on skin thing has diminished with age.

I have a phobia about jewellery. I’ve read a lot psychoanalytic literature. I think according to Freud the phobic object embodies the memory of something we have repressed, or feelings we are trying to deny. Which could be true, I don’t know because I’ve repressed it, but maybe it will be a good subject for me to investigate during an art therapy session. It was mostly my twins plastic jewellery that freaked me out. Her plastic beads were the worst, if we were having an argument she would sometimes throw them at me or threaten to if I didn’t shut up or go away.

My Nan was a ballroom dancer and she had lots of fake jewellery. I remember when we used to visit her, she used to make us go into her bedroom and choose a piece before going home. I would usually find a piece of furniture to hide behind at this point. I also remember my granddad yelling at her to ‘leave the poor child alone’. But she wouldn’t. She believed any mental issues could be overcome by force of will. So I would be dragged off to her bedroom and presented with her jewellery box. I would never put my hand in though, so she would chose something and put it into hand which would be held out dead flat and I would carry it to my mother who would put it in her handbag. I’m not sure if this is a phobia proper or whether this is another sensory issue.

Another phobia thing I have, is I don’t like being naked. I used to think this was just embarrassment. But I’ve realised my embarrassment and discomfort goes beyond what is normal. I just don’t feel safe or secure without my clothes on. I used to think this was purely a psychology reason for this. But now I’m wondering if there is also a physiological reason. I don’t like wearing loose clothing, or if I do I have to wear something clingy underneath like a lycra t-shirt or vest.

I think sensory issues are a bigger problem when you’re a child because everything is new. New sights and sounds and new tastes and textures, which is all very distressing when you’re autistic and like familiarity. If today, someone produced an object I had never seen or touched before, I would probably react the same way I did as a child.

Another thing that comes under the sensory issue of touch would be food and what we put in our mouths. My Dad used to call me ‘The Bit Queen’, because I didn’t like food with bits in it. I remember the first time I went strawberry picking. Me and my twin sat in front of the television when we got home and ate our strawberries. I only managed one strawberry though because I had to pick all the seeds out of it first. There was only one brand of yoghurt I would eat, Mr Men yoghurts, because all the others had bits in them.

I think one thing I do which people find strange is the way I touch and rub my skin. I do this with my face and hands a lot. I now think this is a form stimming. As is sitting on a radiator when it’s not cold and squeezing and rubbing my arms. They are all forms of self-stimulation. I read on The National Autistic Society’s webpage that stimming (also called stereotypy behaviour) is usually associated with people who have severe learning difficulties. I think all autistic people stim, they are just more aware of what is socially acceptable and what isn’t. Temple Grandin’s squeeze machine could be described as a way of stimming.

I think the reason these self-stimulating actions have got a bad press is because NT people misunderstand the purpose and reasons for these actions. They approach the behaviour from an NT perspective rather than an autistic perspective. Stereotypy behaviour is defined on The National Autistic Society website as ‘repetitive actions lacking curiosity and creativity’. They lack curiosity and creativity because that is not their purpose, their purpose is to give pleasure and assist relaxation. I’m sure there are actions NT people indulge in, in private, that have a repetitive element that also give pleasure and relaxation. Just because we don’t understand the pleasures of another doesn’t mean we should label the action as pointless or meaningless.

I’ve read that people stim in order to stimulate, under stimulated senses. My hearing and sight are senses that are often overwhelmed but I think my senses to do with touch are very under simulated. These are the senses I’m often trying to stimulate. I don’t get a normal level of stimulation from my everyday interaction. I guess, even though my sense of touch isn’t conveying all the information it should, my brain is still wanting or missing this input. This input seems to be necessary to the brain for it to be happy. Maybe there is a mechanism in the brain that is asking for this input, and stimming is the only way I can provide it because my sensory receptors are not efficient enough to gather the input on their own.