The concept that my experiences of sensory things are different from other people’s is one that simply never occurred to me until I started reading about Aspergers. In the same way that one assumes that, for instance, everyone sees the same colour for what they call yellow, I assumed my senses were the same as everyone else’s.
I have vivid memories of being in department stores and supermarkets as a child, with my family. I would feel a horrible feeling, which became worse and worse and I would then sit down on the floor because it was uncomfortable to stay standing, and I would scream that I wanted to go home. My mother would get angry with me because she thought I was throwing a tantrum out of boredom or impatience. I would say I didn’t feel well and she didn’t believe me, because I didn’t have a fever or look ill in any way.
I had no way of being able to explain sensory overload, and people weren’t aware of such a thing back then. What I was feeling was a sense of being overwhelmed by noises, lights, too many things around me, not having any sense of where I was going or what I was doing, and a dizziness that made it hard to stay standing. I can explain this in retrospect, and I also know in retrospect that the fluorescent lights affect my vestibular system and make me dizzy. As a teenager and adult, there were many experiences in supermarkets where I would become dizzy and start blacking out and have to sit down.
I also have vivid memories of loving to have my back tickled gently. I think it started when my mother did it once, when I was about four, and then I told her to keep doing it, and every evening I wanted her to do it. She wouldn’t always do it, so I tried to get other people to do it. When I started school, I would ask anyone and everyone in my class to tickle my back. Some did it once, but most stopped after a couple of minutes. One girl would do it whenever I asked, for as long as I wanted, until eventually she would say ‘Can I stop now? My arm is tired.’ I would reluctantly let her stop.
However, her tickling sessions were brought to an abrupt end one day. One day in assembly, as she had her hand on my back, tickling away, the head mistress said in a loud, horrified, angry voice: ‘Stop that at once.’ I remember I had no idea that she was talking to us or what she was talking about, but the head mistress then said ‘You know what I’m talking about!’ I didn’t have any idea, but I guess the girl who was tickling my back knew, because she stopped.
As my younger sisters grew older, I would get them to tickle my back, and I would sometimes give them my toys and pocket money in exchange for a tickle. I remember, once when I was six, my mother was tickling my back and I didn’t want her to stop, and she said jokily ‘I need to get a machine that tickles your back forever.’ I didn’t realise this was a joke, and I thought it was a wonderful idea. To me the experience had nothing to do with any kind of intimacy (I imagine in retrospect that the head mistress thought that it was something sexual – that I and the other girl were engaging in lesbian activities at the age of four!). Whether it was a machine or a person would have made no difference. I just loved the feeling on my back.
I give the two very different examples of supermarkets and back tickling to illustrate how, as Donna Williams says, the sensory issues of autism can either be like a private heaven or a hell. This is definitely true of me. Sensory sensitivity can either be overwhelmingly awful, or utterly amazing.
Another example of a good sensory experience is the feeling of sand – lying on sand, pushing my hands and feet into the sand, feeling it’s pressure and it’s fluidity. I have a photo of myself as a child in which you can see how much I enjoyed this.
Whereas normally I would get bored if I had nothing specific to do, I could lie for ages on the sand, just enjoying the feel of my body against it.
An example of a negative sensory experience is bright light. In the next picture, my sisters and I were having our photo taken with our dad, and the sun was in our eyes. This is an unpleasant experience for everyone, but, rather than shielding my eyes or looking away as my sisters did, I became overwhelmed and held up my arms, not knowing what to do. You can see me on the far left, with my arms raised up and my hands stiffened. Somehow my instinct is to push away the light, as if it’s something physical, because it feels like it’s intruding on me, so my arms create a barrier around me. It’s the same even now if there is a flash of bright light or a loud unexpected noise. I know it is illogical, but it is how my body reacts, because it doesn’t integrate the senses very well and have an instinctive sense of what to do.
As an adult, since I have read a lot about Aspergers and difficulties with sensory integration, I have some strategies in place to help. For instance, I have Irlen tints on my glasses, which are very soothing and stop light being so intrusive. I wear a cap to limit how much I see, and to shield my eyes a little from light. The more overwhelmed I am, the more I push down my cap, so my field of vision is smaller, and so there are fewer things to overwhelm and distract me. When I go into a supermarket, I make sure to go through it very quickly, and I try to be aware of my dizziness levels, and if necessary to pay for my groceries and leave before I’ve picked up all I planned to buy. I have some groceries delivered, to save trips to the supermarket. I make sure to have at least one day a week where I stay at home and rest. I am aware that I’m a lot more sensitive to sensory stimuli when I’m tired, so I make sure to have enough sleep. All these things help reduce unpleasant sensory experiences.
I also find ways to create good sensory experiences – not only because they feel good, but because they help with sensory integration in general and they help to reduce the discomfort of unpleasant sensory experiences. I have massages and also I have cranial osteopathy. I also used to go to a flotation tank where I used to live, but there isn’t one where I live now. All these things are quite expensive, so I have to budget and I can’t do them as often as I’d like. As a cheaper alternative, I buy aromatherapy oils and massage myself. I also burn my aromatherapy oils in an oil burner, because I love certain smells, especially the smell of lavender. As a child I used to pick lavendar all the time and put it in a bag and spend a lot of time smelling it. It’s a lot more convenient as a smell in the air from an oil burner.
I have realised that I like a slight pressure all over my body – in the same way that Temple Grandin likes a ‘squeeze machine’. So I tuck my duvet into my bed very tight (you can also get weighted blankets, but that is expensive and I don’t have much money, so I tuck in my duvet as an alternative way to exert pressure on my body). Somehow it is calming. It also makes me more aware of my body boundaries – where my body is in space. A common aspect of Aspergers is poor proprioception – difficulty perceiving exactly where one’s body is and where the boundaries are. I also like to wear clothes that exert a gentle pressure which is the same all over, rather than some parts that are tighter. I really like to wear soft tights or leggings – and I make sure to get a size too big for me, so they aren’t uncomfortably tight.
I could say a lot more about sensory issues, as they affect me quite a lot, but this is just a general introduction, giving some examples to give a sense of what it’s like and the variety of sensory experiences one can have. I will write more entries on sensory issues in future.