Some background for "Living with autism" programme

We all think we can tell when someone is ‘a bit autistic’. Amazingly, the word ‘autistic’ didn’t even exist until the 1940s. This is when autism was first described and given a label*. [*Autos means Self in Greek and refers to withdrawal from social contact into the self]. This is also the time when I was born, and I can therefore say that my own life history has coincided with the history of autism. I have been fascinated by autism ever since I first saw autistic children. This was in the mid 1960s, right at the time when pioneering researchers carried out the very first psychological studies to understand the bewildering symptoms of autism, and I joined them in this quest as a PhD student. In everyday language ‘autistic’ often means nothing more than socially awkward and obsessive. Well, this might describe me, at a pinch. But that’s not real autism! There is no getting around the fact that autism arises from brain abnormalities. Small mutations, genetic predispositions and developmental hazards are the likely causes, and they act already well before birth. We don’t as yet know the causes in any detail, but we can see the consequences, which slowly unfold during development: characteristic difficulties in social communication and strangely repetitive actions and special interests. We also don’t know yet why the consequences of the condition can be sometimes mild and sometimes severe.

It took about two decades of dedicated research into the behaviour of autistic children to pinpoint what it actually is that so limits their social life. It was not because they were slow intellectually or did not have good enough language. It was also not a desire ‘to be alone’. Instead in the mid 1980s my research team hit on a subtle mechanism, that nobody had up to then even suspected of being of any importance to our everyday social life. We are all born with this mechanism, except for autistic individuals. It provides us with a sixth sense that automatically latches on to other people’s intentions, feelings and beliefs and constantly tracks these mental states. That’s why we made up the word ‘mentalising’ to refer to it.

As soon as it became possible to use scanners to eavesdrop on the thinking brain, in the early 1990s, my colleagues and I were eager to find out what the actively mentalising brain would look like. Indeed studies revealed a circuit in the brain that is particularly active when we mentalise. We and many other research groups since have shown that this circuit is not working properly in autism. The point is that it is a very specialised sort of social sense. So it is perfectly possible for autistic people, despite their problem with social interactions, to still have many useful social capacities. For example, they can show and understand emotional responses. They have empathy, that is, they have an automatic emotional response to another person’s distress. They generally like being with other people. It’s just this one specialised mechanism that is missing. Autistic people say they have to understand scientifically how other people behave because they can’t do so instinctively.

But there is more to autism than social communication difficulties. What about the repetitive actions and what about the savant talents we always hear about? One idea is that these talents are probably sparked by a tendency to focus on detail. And this focus on detail plays a role in their frequent insistence that everything always remain the same and in the same place. Autistic people’s interests often start with small things, but they can grow into big systems and sometimes into big collections. To become a skilled programmer, or pianist, when you are autistic, time is not an issue, nor is perseverance. If 10,000 of practice are a substantial contribution to perfecting a special skill, then autism provides the favourable conditions.

Almost every autistic individual is very good at something, but it would be very wrong to expect that everyone is a “Rainman”. Only half a percent of people with autism have truly outstanding talents. There is the idea that many famous mathematicians or scientists were autistic. This is very unlikely, but it is appealing to believe that high achievers can also be incompetent in the everyday social spheres of life.

The autism spectrum is very wide, and autism is not particularly rare. About 1 in 100 children born are somewhere on the autism spectrum. The phenomenal rise in cases that was seen after the 1980s, can be explained by better methods of identification and loosening of the diagnostic criteria. So far, no environmental cause has been identified, and there is no autism epidemic. In fact autism has always been with us, but we have not always been able to see it.

In my mind I can still see the children who I first knew as autistic. They are now getting on in age, just like me. I look at them and feel that autism is as mysterious as ever, that new questions arise all the time. An admired teacher told me once that it is necessary to love autistic individuals not despite their autism, but because of it. I completely agree. I love not only the very clever ones who so brilliantly tell us about their experiences, and who can make us laugh, but also the others, who can’t do this.