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In a different world

Photo: Gino Spiro
Photo: Gino Spiro
If you took a test for autism, how would you fare? Astonishingly, as many as 1 in 300 of us would "pass", maybe more. And a large number of those would be male scientists, according to Simon Baron-Cohen. A clinical psychologist at Cambridge University, he heads the first team to have come up with a simple test for autism. And he runs a clinic for Asperger's syndrome, a form of the condition. The clinic and the research which shaped the test have helped Baron-Cohen forge a new theory of autism and a fresh approach to it. He explained all to Liz Else

Are you saying that autism isn't necessarily a disability?

Classic autism is a disability, because it causes social and communication difficulties, and also involves learning difficulties or language delay. But with Asperger's syndrome it's not that simple. Clearly from the parents' or teachers' perspectives, a child's odd behaviour is a disability. But that may be saying more about the environment in which that individual finds him or herself than about the condition. From the perspective of a person with Asperger's syndrome, they just seem to be different, not disabled. Socialising isn't their strong point. And they'll readily admit that they find the rules of social behaviour difficult. But they develop deep interests in the detail of a narrow, usually impersonal, topic. Their social disability is only a problem in an environment where everyone is expected to be equally socially able.

So does that mean that society should be changed to suit people with autism? Or should people with autism change to fit society?

It's a bit of both. People with Asperger's syndrome are clearly trying hard to fit in with society. A recent book about Asperger's by Liane Holliday Willey, who has the condition, is called Pretending to be Normal. That's how hard most people with Asperger's are trying to adapt. But we do also have to change society to some extent. These children often have a very sad time at school. They frequently get bullied or teased. They may even get asked to leave school if they are too difficult to manage in the classroom. So one thing society could do is to educate teachers and the other children at school. I hope we can change the school system so that teachers can say "We're lucky we've got someone with Asperger's in our class. He thinks differently. He may not want to go out to the playground at break time and instead might want to read atlases, but that's alright. He has his own views and is not just following the crowd." We can celebrate difference.

Are people with Asperger's coming into their own more in this highly technological, industrial society?

Certainly these niches are opening up for them. Computer science is a clear example of a niche where good attention to detail is crucial. People with Asperger's often have excellent attention to detail. So in certain fields an increase in autistic traits to a certain level may not necessarily have a cost and could be a benefit.

After all, who would you want working in air traffic control?

You're right in that you need a person who has got an eye for the technical detail, but equally you need someone who can react to change. This wouldn't suit all people with Asperger's, because the social element might make this area too unpredictable. Most people with Asperger's opt for a field that is highly systematised and predictable. But there are some who don't panic at the unexpected so long as they can see it as a logical problem. So, if a light on a control panel is flashing more than it should, they start considering all the logical possibilities, whereas the rest of us are thinking, "help". We had an interesting example at our clinic where parents told us they had lost their child in the zoo. The mother got very, very distressed. But the father who had Asperger's stayed calm and did systematic checking, and his logical search found his son.

How else could we manage Asperger's syndrome in the workplace?

When a new business or project is set up you need a team of people with complementary skills. Some people have to be people- centred, but some also need to be product or system-centred, and connect with the nitty-gritty detail of the product or the system. A person with Asperger's syndrome would blossom in this role, and just as at school, should be celebrated in the workplace.

So our strength is breadth while for people with Asperger's it is depth.

That's a very good way of putting it. When I talk to the patients in our clinic, time and time again they say, "I don't like to do things superficially. If I do something, I do it properly and deeply". That seems to be the pay-off--they are experts on things, they do things thoroughly.

How common is Asperger's syndrome in the general population--compared with classic autism?

There is some controversy, but some experts say it is as high as 1 in 300. Current estimates for classic autism are around 1 in 1000.

Is there a divide between the sexes?

Classic autism occurs in the ratio of 4 to 1 male to female, while Asperger's is at least 10 to 1 male to female, and maybe higher according to some studies.

So is Asperger's or classic autism on the increase?

There is an impression of this. In the old days people only used to look for autism in special schools with children with learning difficulties, or in child psychiatric clinics. They never thought to look for it in mainstream settings. But now there's much more awareness. So more of the high-functioning cases of autism and Asperger's are being identified.

When you ran your AQ (Autism-Spectrum Quotient) test, how did you set it up?

We tested four groups: 58 adults with Asperger's syndrome, 174 randomly selected controls, 840 students at Cambridge University, and finally the 16 winners of the UK Mathematics Olympiad. Each group was sent a questionnaire by post. It consisted of 50 questions covering the autistic traits of social skill, attention switching, attention to detail, communication and imagination.

Photo: Gino Spiro
Photo: Gino Spiro

What were the results?

We found that the majority of people with Asperger's syndrome scored above 32 (out of a maximum of 50) on the AQ. But interestingly, among the students at Cambridge University, people in the sciences and technology had a higher AQ score compared to people in the arts and humanities.

Which kind of scientists obtained the highest AQ scores?

Mathematicians scored the highest of all, around 20 out of 50. They were closely followed by engineers, computer scientists, and physicists. Among the scientists, biologists and medics scored the lowest, around 14 out of 50. This is telling us that autistic traits are common in the general population and are distributed. But only a small percentage of people have a very large number of such traits and find their way into a clinic.

What are the people like who attend your clinic?

They have often had a very difficult time with social isolation, starting at school with being bullied and generally made to feel that they were all wrong. By the time they come to us as adults, they are often in considerable distress. We ask them a lot about their childhood and check their own account with their parents. The sad thing is that they have often spent 20 or 30 years feeling as if they don't fit in, but not knowing why. Not surprisingly, many of them have developed the secondary complication of depression.

What's the benefit for these people of getting diagnosed with Asperger's?

We have found that receiving a diagnosis is often a relief both for the patient, and for their families. Suddenly, a lifetime of odd behaviour, and of isolation, makes sense. But a diagnosis should also lead to accessing the relevant support. Sometimes patients want us to explain Asperger's syndrome to their employer or university tutor. We'll explain what Asperger's is, what that person's strengths will be, and what they may find most difficult, such as the inability to engage in social chit-chat. Sometimes patients want to make use of a befriending service, or learn social skills.

Why have you concentrated on the higher end of the autism range?

Clinically, this has been a neglected group. And scientifically, if you try to study classical autism there are a host of other problems that might also be present, like learning difficulties or language delay. In Asperger's syndrome, we can concentrate on the key features of autism without these additional symptoms, and consider what they tell us about the way the human brain works. We have tested some people with Asperger's using brain scanning, showing them photographs of facial expressions and asking them to describe what they saw. We found that the brain in someone with Asperger's is not using the natural areas to decode such facial expressions.

Which brain areas are affected by autism, and what's new about your findings?

My argument is that there are particular parts of the brain that play a role in social understanding. One of those parts is the amygdala. If a monkey has a lesion in the amygdala, for example, their social behaviour changes. They no longer know where they fit in the social group, and don't know whether another monkey is being friendly, or not. This idea of the "social brain" was first written about in the 1980s by Lesley Brothers at the University of California, Los Angeles. My work in autism has added support to this idea.

How do you plan to take the research forward?

Well, we've just started a genetic study of Asperger's. So, we hope more people with the condition will volunteer to participate, and this will ultimately help us understand how the brain of someone with Asperger's syndrome is being programmed to develop differently from before birth.

Given the number of people with Asperger's, shouldn't Britain's National Health Service give clinics like yours priority?

Yes. The NHS is going through big changes at the moment and we don't know yet if Asperger's is going to be a priority, either locally or nationally. But it can be devastating for some people, leading them to feel suicidal. It doesn't have to be like that.

If you want to participate in research into Asperger's syndrome, contact the Cambridge University Autism Research Centre, e-mail: sb205@cus.cam.ac.uk

Asperger's syndrome: the key features

Simon Baron-Cohen has produced a simplified table of key features of Asperger's syndrome based on work at his clinic: the Cambridge Lifespan Asperger Syndrome Service (CLASS). Before you panic--or feel relieved to have found a possible explanation for your problems--ALL 10 descriptions must apply to you, and your difficulties must be significantly interfering with your daily life.

I find social situations confusing

I find it hard to make small talk

I did not enjoy imaginative story-writing at school

I am good at picking up details and facts

I find it hard to work out what other people are thinking and feeling

I can focus on certain things for very long periods

People often say I was rude even when this was not intended

I have unusually strong, narrow interests

I do certain things in an inflexible, repetitive way

I have always had difficulty making friends

From New Scientist magazine, 14 April 2001.

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