The Human Condition: My family and other strangers

I've always wanted to become "normal" or "ordinary" or whatever I should call this, and therefore I've watched ordinary people closely. And during all these years I've learnt a lot about how they think. So my guess is that when people who have hearr about my diagnosis meet me, they try to find something odd or strange in my behaviour. But they can't come up with anything. And some of them may think that since I seem so "normal", I therefore am "normal". Well, life isn't so simple.

The fact that so-called normal people have thought that they know exactly how all human beings function has been one of the harmful things in my life: that those people have had a model into which they have tried to fit me. And that they also have been absolutely convinced that this model of theirs is the only existing model. That's why they have told me to behave myself and to not be different. They have never imagined that I would function differently from them, and they have never been able to guess what I felt. Lack of empathy, or what?!! I wish all of you reading this would undertand that there isn't only one model. Maybe someone would want to use what I'm saying to make up a model into which all high-functioning autistic people should fit. But if you want to make such a model, you must remember that we don't all have the same needs or even want to be treated in the same way. It is true in fact that we who have autistic traits show sameness in our ways of thinking and behaving. And you can test us and see this sameness on a piece of paper. But all of you also show a sameness in your way of thinking and behaving. And no-one would ever think that you all needed or wanted the same thing.

When I was a kid, I was not at all interested in other people; I didn't know what they were for. The world seemed totally incomprehensible to me, and I almost always felt confused. I thought - and still do when I don't stop and think - that people meant what they said. I myself always said exactly what I meant. So to me it's not the big misunderstandings that have been most difficult. Like for example misinterpreting "Give me your hands" and thinking they want you to chop them off. What has been very confusing and often hurtful are the more subtle ones that no-one ever could explain. Like when someone says "Of course you will get that job," and I thought this meant they actually knew this. I thought they couldn't possibly put the words this way if they didn't know this for sure. So I came to the conclusion that they could look into the future in some strange way.

Another thing that sometimes has led to misunderstandings is the way I see colours. I have always had colours inside me. Things that people have said and how they say it, the intonation, has always become colours inside of me. The people themselves are colours too. And I have always tried to use the colours to understand the world. When two things produced the same colour inside of me, I thought of it as a connection between these two things. There is a word for seeing colours like this, it's called synaesthesia and is not very unusual. What may be unusual, though, is that whenever I lacked reliable information from my other senses I trusted my synaesthesia. It has cut both ways. Sometimes it made me misunderstand and misinterpret the world, but sometimes it has made me discover real connections long before others could see them.

My eyesight has always seemed very sharp and special to me. This is hard to describe and I think it's best done by quoting my book. "There was something different with the way I saw things. My sight was somewhat flat; it felt two-dimensional and that affected the way I perceived rooms and people. It was as if I had to go to my eyes to pick up the sight, as if I manually had to take the picture to the brain, it didn't just come to me. My sight did not give me an automatic focus on what I saw, it all seemed to have the same sharpness. The world looked like a photograph, and that had consequences. For example I didn't know that the houses I saw on our street had an inside. My sight gave me the image of everything as if it was cut out of cardboard. I knew that our house had an inside volume, but I didn't link this to the house next to ours. I perceived the empty faces that I sometimes saw in the gardens that surrounded the house as extensions of my view of the house. It never occurred to me that they could be people who actually lived there, like my family lived in my house".

I also had obsessions and ritualistic and compulsive behaviour when I was a kid, and it almost always had to do with something curved. It's hard to explain, but many times it was a way to handle a very unpleasant feeling I had in my back and my neck. It was as if I had some sort of shiver inside my spine. It felt like torture. One way of holding that feeling back was touching different things.

I can see that there's a logic in compulsive behaviour when you suffer from something that is permanent and unbearable. I think that totally non-autistic people maybe also would behave that way, if you put them through that kind of inside torture. But of course I don't know this, and I don't know if other people with autism felt the same way as I did. They could have different reasons for behaving compulsively. What doesn't apply to me is the theory I've seen in some books on autism - that compulsive behaviour comes from the need to control a world of chaos. This theory strikes me as the usual One And Only Model thinking, which you use when you can't find the right explanation. I have never understood why experts have such a difficulty with admitting that "we don't know anything about this, we'll see if we find the answers in the future".

While I was writing my book it became more obvious to me how logical my behaviour was, that almost every behaviour which was looked upon as strange or different (and therefore irritating) was in fact very logical. For instance I had these tantrums when I used to scream, bite, kick and throw things around. And when I was writing about these tantrums it struck me that if you put any non-autistic person in a position where he year after year felt misunderstood, and he himself misinterpreted the world, and had difficulties in communicating this, then he might also start to throw things around. This does not mean that I think you could make a person autistic this way, it only means that things may be less odd than they seem to be. I was diagnosed as an adult, when my disability was less obvious than it has been. Until then I always tried hard to be like "everyone else". Now I'm a lot more like "everyone" than I ever have been, but now I'm not so sure that this is what I want. So now I've tried to acquire a disability awareness, and make this a part of me. Books and lectures on autism often produce the feeling that autistic people cease to exist when they've left high school. And if we sometimes, in spite of this, do exist, we are not expected to take an interest in what research says about our disability. This feeling of no-one recognising your existence is really sad.

Copyright=A91996 Gunilla Gerland. 'A Real Person: Life on the Outside', by Gunilla Gerland, Souvenir Press, pounds 18.99.