LORNA WING: My name’s Lorna Wing and I’m a psychiatrist. I medically trained and then went into adult psychiatry. I became very interested in autistic disorders because I had an autistic daughter and I’ve always been interested in the long-term chronic conditions that you find in psychiatry. It just seemed that with my past experience and my personal experience, sensible to make use of both and to start doing research work in the field. So I worked in the field of mental handicap and learning disabilities as they call it now and autism. For most of my working life I’ve been employed by the Medical Research Council. Then I retired, together with Judith Gould, and we set up the Centre for Social and Communication Disorders, a diagnostic and assessment centre under the auspices of the National Autistic Society (NAS).
EILEEN HOPKINS: Looking back over that extensive professional life, what would you think were the most significant developments that have led to our greater understanding of autism and who would you see were the key players?
When I started in the field, I first became interested when my daughter was born in the 1950’s, the attitude to autism then was completely different to how it is now. Then it was considered to be a psychological or an emotional problem, which was caused by the child being reared by cold, distant ‘refrigerator’ parents, as the saying was then. This was very sad because the person, who originally described and defined classic autism, was Leo Kanner and his descriptions were absolutely marvelous. However, he originally thought that it was a genetic disorder, because he could see some similar traits in the parents. Of course time has shown him to be right in that guess.
Unfortunately, the climate of opinion in those days, was very strongly in favour of a psychoanalytical approach and explaining everything in terms of emotional disorder, and forgetting that people had physical brains at all. So Kanner went the same way later, after having originally suggested a genetic cause. He later went on to suggest the cold ‘refrigerator’ parents, aided and abetted very much by his colleague Leon Eisenberg. But both of them later on changed their minds and became interested in the physical causes of autistic disorders.
So the big change has been that the idea of psychological causation has gone and people are now very clear that it is due to developmental disorder, physical disorder of the brain, that genetic factors are very important, though they may not be the only ones involved. The people that were significant in changing that were to start with, very early on psychologist colleagues, Arty Hermelin and Neil O’Connor they were among the first, may be the first to do careful psychological assessments of children with autism. They looked at their skills and disabilities, very objectively and linked their findings with what was understood about brain development and how it influenced one’s psychological abilities and disabilities.
Another big name, of course, is Professor Michael Rutter, who is a child psychiatrist and who was influential in looking at the clinical features of the autistic disorders, giving very clear descriptions and looking at what happened when autistic children grew up and in recent years, his attention has turned to the genetic aspects of autism.
Looking as being one of the defining figures in the field of autism, defining the triad as being the core issues for people with autism, can you make some comment as to why the triad? Why not the 15 points? Why not the wider picture? Why the triad?
Judith Gould and I did a study in the former London Borough of Camberwell. We followed on from Victor Lotter, another big name in the early days, which had done an epidemiological study of classic autism very narrowly defined, exactly as Leo Kanner had defined the original group. He found the classic figure of 4.5 in 10,000 children.
What Judy and I wanted to do was not come along with an absolutely set definition you know, these are the points that define autism and anything else outside those points we’re not interested in. We had a different angle on this. What we wanted to do was see how much items of autistic behaviour, features of autistic behaviour, how often they occurred among children in general. We were interested in anything that was anything like the features of an autistic disorder. Even one single thing, like having odd stereotype movements interested us. So therefore we were approaching the thing bottom up, instead of top down.
We designed an interview schedule, to pick up features of any kind among a population of children. We would have liked to examine every single child in Camberwell, but since there were 35,000 of them under age 15, this wasn’t really a practical proposition, because Vic Lotter had found virtually all his cases in the services for people with various kinds of disabilities. We decided to confine our search to the disabled children.
So we tracked down nearly one thousand children who had some kind of psychological or physical disability varying from, blind children, deaf children, children with learning disabilities, cerebral palsy, children with so called emotional disorders, children with language disorders. We tracked them down as best we could. We did interviews with their parents and teachers and psychological testing of the children.
We found we were able to identify the features described be Kanner, we were able to identify a very classic, little group of children, which had it to perfection. We also found a lot more children who had odds and bits of that classic picture, but not the whole thing.
It turned out with hindsight, when we started to learn about Asperger’s work (another figure not known in this country in those days, because he had written in German at the end of the war, and his work hadn’t become known in the UK), that there were children who fitted his descriptions, as we learned later.
There were also children who had bits and pieces of both or neither and who, nevertheless, had this odd type of disability, which affected their whole lives. When we teased out what they had in common, we found they had the triad in common.
What brought all these children with odd behaviour together was - impairment off social interaction, their capacity of imagination, planning, organizing, of their lives. This was always associated with a repetitive pattern of activities varying manifestations of that, but the repetitiveness and stereotype nature was always there, and it was this that held the group of children together because they’ve got reading problems. You could have another group held together because they do not speak very well. You can choose all sorts of things.
It seemed to us that the triad of impairments (which was really held together by the social impairment) basically had such a marked effect on the children’s lives. It sort of made them apart from everybody else it was such a profound problem even in apparently mild manifestations, that we homed in on this.
Children are obviously defined as having social and communication disorder, which is something most professionals can come to terms with and grasp. But the third category in the triad we describe as imagination or other terms to look at that area of the triad that’s obviously the most difficult bit for people to get hold of. How would you define that area of impound?
It’s really very important, although I agree it’s often missed out, because the other two are so much easier to recognise.
The capacity for imagination starts off very early in the child one to two years old, as a kind of imitation of what they see other people doing. But very quickly children start to embroider a scenario. They start to invent all kinds of pieces of action. They start exploring “what if?” This exploration of “what if?” becomes more and more complex and sophisticated as they get older, ending up with the ability to test out in ones mind possible effects of different actions. So you can plan in advance.
People who can cope with life are those who are able to think through and look at different possibilities, test them out in their minds without having to put them into practice, until they are sure what would be the most sensible thing to do. Of course you are often very wrong. Somebody said in every situation there are three possibilities, but it will be the fourth that happens. Even so, as you get more and more experienced with life, then you can make better and better judgements about what may happen.
The capacity to think it through you mind is very important, and that to me is imagination.
It starts off in young children pretending to be mother and father, doctors and nurses or soldiers, spaceman and so on, that it gradually becomes a way of planning ones life.
The sad thing about people with autistic disorders is how very lacking they are in that ability. How they are driven somehow by their intense interests, and no way do they seem able to work out the consequences of their actions, when they’re on a path towards obtaining the object they want, or carrying out the routine that they want.
We talked a bit about the findings of the Camberwell study. In recent years the numbers and the defining of autistic spectrum disorders have been widened tremendously, and our understanding of people with Asperger syndrome and people who may have some of the characteristics of autistic spectrum disorders has grown. What do you think the implications are for people like that, that don’t actually need a specific service to help them cope with life? What do you think are the implications for that group?
I think it’s very important for everybody to understand that aspects of the genetic traits that go to make up an autistic disorder. On their own a lot of them can be very valuable and helpful. I think it is very significant what Asperger said; “In order to be a great scientist or a great artist, you have to have some traits of Asperger syndrome” this is because it allows you to detach yourself from everyday concerns and pursue your scientific or your artistic idea. The important thing is to be able to get back into ordinary life when you want to, and that’s where someone with the whole problem is at a great disadvantage. To have a little bit of it can really be enormously helpful. As I am sure anybody who thinks about it will know, the capacity to drive towards an objective and not allow anything to get in your way. The capacity to detach yourself from all other concerns and pursue what it is you need to do. The capacity to stand aside from the crowd and not be led along into ghastly behaviour that some crowds indulge in, to enable you to stand aside and say, no, I don’t believe that this particular group of humanity are abhorrent or entirely wicked.
There are other things. There are other ways to thinking about this, which are different. That capacity to stand aside and to look at things in a detached way is part of the autistic pattern the positive side.
So, there are a lot of people with varying degrees of this ability of this pattern who actually are very successful in their lives. Now most of them are perfectly happy with the little bit of Asperger syndrome that they’ve got, and it’s stood them in very good stead.
But, there are others that have got just enough to find life difficult. They manage, they do well in their work, perhaps they’re scientists or accountants, and perhaps they’re mathematicians or computer people who do very well in their work. But, their personal relationships are not easy because they lack the capacity to understand other people. For them they are not going to need services, day care residential homes, medication or anything like that.
What would be very good would be for the world to understand that people vary. Teachers need to understand this. I think an awful lot of the problems that children who don’t fit in meeting classes due to the fact that the teacher doesn’t actually understand that there are different kinds of human beings.
Absolutely, it even goes into the problem of educating boys, because a lot of boys have the pattern of very good visuo-spatial skills, and much less good language and poor reading. Now a lot of them get into trouble because they don’t fit neatly in the educational system as it stands at the moment.
If only people understood that this legitimate pattern is very like the autistic pattern in many ways. It’s a legitimate way to be. You need to provide appropriate education for children like that, particularly boys. It happens, as autism is more common in boys, this pattern of good visuo-spatial skills and poor language is also more common in boys.
Overall, one hopes that trying to help people understand autism spectrum disorders will change the climates, make it more tolerant, allow such people to pursue and use their gifts and not feel at a grave disadvantage.
These last 40 years has now culminated into the development of a system and a schedule to allow the diagnosis of autistic spectrum disorders that defined and named the DISCO. Do you want to talk about that and where that has come from and what the hopes are?
It really started with the Camberwell Study that I mentioned earlier, we needed a schedule in order for us to interview people systematically, going through every aspect we wanted to ask about. And it was an aide memoir really.
You need to ask a very large number of questions about a lot of different areas, and that one was called the Handicaps and Behaviour Skills Schedule the HBS, and it was very helpful for that study.
When we opened Elliot House the Diagnostic Centre (by then we had realised how much wider the spectrum was, than what everyone had originally thought). We knew that we wanted to ask systematically about every area of development and about the abnormalities associated with particular aspects of development as well as the stereotypes, repetitive routines, temper tantrums and things that go with autistic disorders.
So we built on the HBS, and extended it and came up finally with the present Diagnostic Interview for Social and Communication disOrders which Christopher Gillberg in Sweden suggested we called the DISCO.
I would like to emphasise there is another diagnostic interview, which is called the ADI, the Autism Diagnostic Interview, which has been devised by Professor Rutter and his colleagues at the Maudsley Hospital. This is an excellent instrument and is very reliable; a lot of work has been done on it. It’s purpose is to diagnose autism and related disorders, that is it’s purpose and that is it’s aim, and that is absolutely right for research into genetics’ and is very much needed for that purpose.
We had a different purpose in developing the DISCO. Our purpose was to develop a clinical instrument, which didn’t ask, does this person have autism? What is wrong with this person or what is right with them? as well.
What problems, what advantages and skills does this person have? Now that is a very different question than “Has this person got autism?” It is ever so hard to convey this to people. Basically what DISCO tries to do with varying degrees of success is to examine the history right from infancy onwards of the individual concerned, and to try to trace the ways in which different aspects of development have gone right or gone wrong or gone differently. So that we can see how it is that a person behaves in this way at this particular time. Then we can work out this bits good, this needs encouraging, this bits given the person a lot of difficulty what can we do about it?
We have also built in the capacity for getting computerised diagnoses using the standard criteria as in ICD10 system, the DSM4 System, Kanner’s description of classic autism or Gillberg’s description of Asperger’s and so on. We built all these in, but that is not the main purpose. You can use it for that purpose if you so desire and use it for research if you so desire. What we want to know is what makes this person tick in the way they are ticking? It’s fascinating disentangling; it’s a piece of detective work, how this person has reached this point.
It seems to us from our experience that it is far more important than deciding whether or not someone fits the classic criteria. We have come across a lot of people who don’t fit any of the classic criteria, but deep down they actually have poor development of their social understanding and their capacity for planning. These two things (they may not have anything else) in life are going to be hellishly difficult for them, and they’re going to get into all kinds of silly situations and terrible trouble, even legal trouble as a result. This to us, is what matters.
We feel this is the basis of their difficulties, even if they don’t have any stereotype movements or repetitive routines or anything like that. Nevertheless, their social understanding is very, very poor, and their capacity for planning and imagining the consequences of their actions is very poor. We can say this is how you would approach them, this is what you do. You don’t spend time on abstract psychotherapy.
If, in addition to that, which usually happens, (although their spoken language may be very good), usually people like that, their actual understanding of language is much poorer than you think. When you actually explore how well they understand language, you begin to realise how much those social and imagination problems go with the comprehension problems. You don’t then spend time going into complex psychotherapy. You use a completely different kind of approach to help them, and that is what matters.
Yes, it provides a sign post for people’s direction. One of the things we do know, is without the diagnosis there is very little access to services and even understanding for those people at the other end of the spectrum, who need self knowledge to help them understand and cope.
So someone who has got themselves into one piece of trouble after another, because they don’t understand the consequences of actions. You don’t sit down and go back to their early childhood and try to work out relationships with their fathers and mothers or anything like that. What you do is to explain to them in a very simple language that this is what will happen if you do this again. If you go into that book shop and take that book on dinosaurs without paying because you don’t have any money, and you think that all books on dinosaurs are yours by right.
You have to explain in very simple concrete terms exactly how all this works and what they should do instead. Write it all down so they’ve got it there to read.
Make a social story like Carol Gray’s ideas, in simple terms to show what happens when you go to a shop and take books on dinosaurs without paying for them, or whatever.
A very pragmatic approach, probably from the experience of both parent and professional.
Absolutely, absolutely.
Thank you very much Lorna and I’m sure we’ll go on and watch the development of DISCO which I think is going to be talked about in another area of the conference. Thank you very much.