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	TX: 4.10.04Ìı ÌıTHE A - Z OF AUTISM PRESENTERS: PETER WHITE AND WINIFRED ROBINSON

	Ìı Downloaded from www.bbc.co.uk/radio4 THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91ÈÈ±¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. Ìı TX: 04.10.04Ìı The A-Z of Autism Ìı PRESENTERS: PETER WHITE AND WINIFRED ROBINSON Ìı Ìı WHITE Today we devote the whole of the programme to autism. We investigate the causes of this increasingly common condition and the various programmes on offer for those who have it. Ìı ROBINSON We report on how autism is portrayed in books and films. And we explore how a condition that's usually accompanied by learning difficulties is often also credited with bringing highly creative insights. The Health Minister, Steven Ladyman, is with us throughout, his current brief includes autism but it's something he's taken an interest in for 10 years and he's also a former research scientist. Ìı WHITE But most of all we hear from the people who live with autism everyday of every week. Ìı MONTAGE Fly winner. Ìı Fly, fly. Ìı Ever so. Ìı High. Ìı Bob, I think held on to the dream for longer than I did that Matthew was actually okay and it wasn't - this whole situation wasn't helped by the doctors sort of saying Matthew was normal. Ìı We know a ... Ìı Could fly too. Ìı I can remember this particular doctor saying it to me - How many times have I got to tell you that there is nothing wrong with this child at all? It is you. Ìı For instance I took my daughter to a doctor, there's something wrong with her and obviously she couldn't speak and that so I said to him - She's autistic. So he said - What's artistic got to do with whatever she had - she had no idea what it was in those days. Ìı Not many people can understand me. Some people say I have a weird accent and also I have a rather wide range of vocabulary with words that they don't understand. Plus I can spell long words such as difficulty or photosynthesis or words like those. Ìı Over the course of the last two years I've seen him take those developmental steps and you see when you have a child with autism and they do it, it's worth 50 times more than if you have a normally developing child because you thought they wouldn't do it - when they said their first word we went out and bought champagne. The day Patrick started speaking we went and bought champagne. Ìı ROBINSON A snap shot of autism. We'll be focussing on autism throughout October. The approach to the condition of both the health services and the education system and what efforts are being made to establish which treatments or interventions, as they tend to be called, work and why. Ìı WHITE And of course throughout we want to hear your views on and personal experiences of autism. Let us know which areas of this huge subject you'd like us to concentrate on and pursue. You can drop us an e-mail via our website, you can give us a call on 0800 044 044 or you can write to us at Broadcasting House, London W1A 1AA. Ìı ROBINSON But first what is autism? People with autism make a big group and they are as different from each other as any other group of people. So what do they have in common? Well here's a little of what we do know. Ìı MONTAGE Autism is a lifelong disability that affects the way a person communicates and relates to other people. Despite wide ranging differences everyone with autism has problems with social interaction and imagination. Ìı Or as one person put it - reality is a confusing interacting mass of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. Ìı The term autistic spectrum disorder or ASD is often used because the degree of disability varies. Some people, for example, with classic autism may have severe learning disabilities or little speech. Ìı Others at the more able end, who have Asperger's Syndrome may have an average or above average intelligence and be able to work and live independently. Ìı Autism affects at least half a million people in the UK. Boys are four times more likely than girls to have autism. Ìı No one knows the cause of autism and it's unclear whether there is an external trigger, such as diet, an infection or exposure to toxins in the home. There is though strong evidence to suggest there are genetic factors involved. Ìı There's no known cure for autistic spectrum disorders. There are dozens of so-called interventions, though there is very little objective scientific research to assess their effectiveness. Ìı WHITE So that's a little of what we know about autism but of course what are the effect it has on people's real lives? With us here in the studio is Charlotte Moore who wrote the Mind the Gap column in the Guardian and now a best-selling book on daily life with her two autistic sons - George and Sam - that's the title of the book as well and their non-autistic younger brother Jake. Also with us is 16-year-old Luke Jackson who has Asperger's Syndrome. Luke has three brothers who all have autistic disorders and three sisters who don't and his mother Jackie is also with us. Ìı Charlotte Moore, first of all, when did you first realise your two sons were autistic because presumably your reaction to the second was very different to your reaction to the first? Ìı MOORE Yes I think we were quite slow to pick up on the fact that our second son Sam was also autistic because at that stage I didn't know that it did recur more than once in a family and also George and Sam are very, very different from each other. So the symptoms manifested themselves very differently in the two boys. Ìı WHITE And you looked actually quite hard at your family, didn't you, and you can't really find much background, even if there is a genetic cause? Ìı MOORE Yes, I think the genetic picture's very complicated because we did look at hard at our family background when we came to decide whether to have a third child or not and you can see sort of eccentricities and oddities on both sides but no one person who definitely had autism. Ìı WHITE So can you just discuss briefly how George and Sam very differently manifested the symptoms? Ìı MOORE Yes I mean George appeared to be a very gifted child. He was an unusual baby but until the age of two and a half all his unusualness seemed to be positive in the sense that he passed all his milestones, both physical and intellectual, very, very early. And we thought he was a bit of a genius, a bit of a star. And Sam was almost the opposite. Sam was fairly slow to get going, particularly on speech, but not terribly slow, I mean we were not that worried. Ìı WHITE One of the things that emerges from your book and I'm sure it'll emerge quite a lot in this - in our series is that almost any generalisation is dangerous, that you just can't generalise. Ìı MOORE Absolutely, I mean George and Sam are as different from each other as they are from Jake - my non-autistic child. Ìı WHITE And can I just ask you about Jake? I mean you had two autistic children, to make a decision to have a third was presumably a very personal but a deliberate decision. Ìı MOORE Oh yes, I think that I thought that if he was autistic that I would be able to cope, yes, no I knew that there was a risk. Ìı WHITE And you were prepared to take that risk? Ìı MOORE Oh yes definitely. Ìı WHITE And I mean on your daily life, because I think there is this gap between hearing you talk very calmly and very rationally about the whole thing, the kind of things that presumably happen every day with you having not one but two autistic children. Ìı MOORE Yes, I mean it is a slow process of getting used to it and accepting - accepting that life isn't ever quite what you imagined it would be. And I'm so used to it now that I sometimes don't realise how strange our life must seem to some people. Ìı WHITE I mean just perhaps give us an example of what somebody who visits your house might encounter which you now take for granted. Ìı MOORE Well I suppose it's a bit odd that - to hear me screeching at my fourteen and a half year old son not to eat the cat food, especially as George is quite - he's quite a fluent speaker and he comes across as quite able in some ways but you know there I am sort of shrieking - George, leave the cat food alone! And I suppose that might take some people by surprise. Ìı WHITE Almost everybody I've ever heard talk about this there seems to be quite a propensity amongst those with serious autism to take their clothes off at inappropriate moments. Ìı MOORE Yes, both boys used to do that a lot and they don't really do that anymore thank goodness, as they're now in their teens. And - but we still get - I mean George was wearing wellingtons all day, all weekend, that sort of thing - there's still little eccentricities about everything. Ìı WHITE Let me bring in Luke, Luke Jackson, we heard Asperger's Syndrome mentioned briefly in those facts, I mean tell me how you're Asperger's affects you. Ìı JACKSON Asperger's mostly affects me in daily social situations, just you'd go out and in your own home you don't really notice it as much as if you're in a crowded social place, for example, school. Ìı WHITE I mean what about this Luke - I mean this is - a lot of people find this quite stressful - sitting round a table with a lot of people, well only me at the moment, firing questions at you - is that a difficult thing for you to do? Ìı JACKSON Today this isn't that bad to be honest because I find there's a kind of anonymity about it, being behind a microphone with headphones on. Ìı WHITE And how do other people treat you - what about school friends and that kind of thing - how do they regard this? Ìı JACKSON People at school mostly accept me to be honest, just for who I am because this is who I am and I'm not about to change anytime soon. Ìı WHITE So could you give me an example of a situation which you would find difficult and you'd try to avoid if you could? Ìı JACKSON Mostly situations - daily school situations like simply a class at the end of school and the bell rings and everyone jumps up from their seats and runs to pack all their bags up, meanwhile I haven't processed even the bell ringing, I'm still sat at my seat trying to work out what we're supposed to be doing and what the homework was. Ten minutes later I'm still sat there. Ìı WHITE And what's going through your mind in that situation, can you explain to us how that feels? Ìı JACKSON What's going through my head? Mostly at that time I'm wondering where everyone's gone, trying to work out what the homework is, looking for somebody to ask and generally just completely confused and not able to process anything around me. Ìı WHITE Can I just ask you why you wrote the book - the specific book - you've written two in fact but the one about your own life? Ìı JACKSON I think I wrote the book mainly because there were things that I didn't understand and there were things that I found out that I learnt throughout the course of actually finding out about Asperger's and when I was originally diagnosed with it. Ìı WHITE What sort of things? Ìı JACKSON Things like mostly why I was different to everybody else and what the differences were. And how to cope with it and how it would impact me in daily life. Ìı WHITE Okay, well we'll come back to you a little later on. We're also joined by Health Minister, Dr Stephen Ladyman, who has special responsibility at the Department of Health for autism but before that you chaired the all party parliamentary group on autism, so how did you become so involved in this really quite specialised area? Ìı LADYMAN It was constituents who were coming to me with difficulties they were facing that brought me into it. I remember one young mother, I went to visit her, her little boy was causing mayhem that day because that was the mood he was in. Her husband had left her because he couldn't cope with the situation and life just seemed very bleak for her and she had no support and no contact with other people who understood autism and it was helping people like her that brought me into it. Ìı WHITE Right, well we'll be hearing more from you about the help you can offer and Stephen Ladyman is also going to be with us on the last day of this series throughout this month. And thank you all very much indeed. Ìı ROBINSON You're listening to You and Yours on Radio 4 where today we are discussing autism. There may always have been people with autism. The recent trend has been to choose a great figure from the past and declare that they must have been autistic - Alexander the Great and Michelangelo are two who've had the benefit of a retrospective diagnosis. The word autism comes from the Greek autos, which means self, but it wasn't used by doctors until the early 20th Century to describe an apparent self-absorption. Classic autism wasn't defined until 1943 by an Austrian psychiatrist who was working in the United States. Since then we have been on a steep learning curve. Will Yates has compiled this report. Ìı KANNER From the beginning I have insisted as principle criteria that we have two specific symptoms - they are extreme aloneness from practically the beginning of life and what I call a desire for the preservation of sameness. Ìı YATES Dr Leo Kanner, describing the characteristics of the 11 children in his 1943 study which led him to coin the term 'early infantile autism'. Previously such children had been described as retarded or mentally defective. Dr Leon Eisenberg worked closely with Kanner in his early studies of the condition. Ìı EISENBERG Some of the verbal autistic children knew such things as having memorised the 43 questions and answers of the Presbyterian catechism, someone else knew the tails of the streetcar system of Baltimore, which no one in his right mind would have wanted to know but this child had them all memorised. This interest in other things, this evidence of, if you like, superior memory, if not superior intelligence, was quite distinct from their remoteness from people. So these were a very different group of children. Ìı KANNER I came very soon to the conclusion that we deal here with a specific unique unduplicated kind of syndrome, of an illness, which is innate, not manmade, not caused by any particular sin of the parents. Ìı EISENBERG Some of the children we saw had been put into treatment, that is their parents had been put into a psychoanalysis on the presumption that it must have been their behaviour that caused this bizarre disorder. I regard that as being doubly accursed. Imagine having a child you couldn't reach, whose behaviour was intractable, difficult, and then to be told it's your fault - you had somehow done it, wittingly or unwittingly. So there was no effective treatment and it wasn't until I'd say in the late '50s and early '60s that people then began to introduce behaviour modification techniques in a variety of forums. Ìı ACTUALITY - BEHAVIOUR MODIFICATION Marti clap your hands, Marti clap your hands. Marti good. Ìı YATES In this example of behaviour modification taken from a 1966 edition of Horizon a severely autistic boy, Marti, is given a sweet every time he does as he is asked. Ìı ACTUALITY Good boy. Marti, touch your nose. Ìı ACTUALITY - SOCIETY FOR AUTISTIC CHILDREN Ìı YATES Variations on this kind of technique by now made their way over the Atlantic. One of the first specialist centres in this country was the Society for Autistic Children's School at Ealing, West London, run by Sybil Elgar. Ìı ELGAR You couldn't start to teach a child, you cannot teach a child who's roaring up and down the room throwing themselves at walls or on the floor or something. You had, first of all, to get this child to obey you, to sit down, it may be necessary to hold the child on to a chair, on to your lap but to hold him and to get his attention. Ìı BRAUNSBERG If we go into this room I can show you some of my earlier works. This is a woven image of a design exercise which I did at my training at the London College of Furniture. Ìı YATES David Braunsberg was a pupil at the Ealing school, he's now 45 and a successful artist. He has vivid memories of his time at the school. Ìı BRAUNSBERG Experiences were that Mrs Elgar was a strict teacher but she was very thorough in making sure that you answered correctly questions. She would put objects and ask you what each object was - toy animals could be an example. Ìı YATES David did very well at the Ealing school but in many ways he was one of the lucky ones. His mother, Hannah Braunsberg says such was the ignorance surrounding autism at the time it had taken her years to have him diagnosed correctly. Ìı HANNAH BRAUNSBERG We saw a psychiatrist who should have known about autism but obviously did not and he diagnosed David as a withdrawn child and wanted to put him in some kind of institution which I resisted because I felt David, it would just break him and so I'm afraid I went against his advice and I'm really quite happy that I did. Ìı YATES Ilsa Bernell's [phon.] daughter Helen was also taught at the Ealing School. She too had struggled to get a correct diagnosis and even then many in the medical profession seemed to know little or nothing about the condition. Ìı BERNELL For instance I took my daughter to a doctor, something wrong with her, and obviously she couldn't speak and that so I said to him - She's autistic. So he said - What's artistic got to do with whatever she had, you know, she had no idea what that was in those days. Ìı YATES To be fair doctors' ignorance was perhaps understandable. Autistic was still seen even by experts as a very rare condition. The perceived wisdom at the time, based on epidemiological studies was that the incidence of autism, under Kanner's strict criteria for diagnosis, was around four and a half in every ten thousand. That view persisted until 1979 when a new study was carried out in South London by psychiatrist Judith Gould and Lorna Wing. Ìı WING What we did find was that there was a set of three particular kinds of impairments that clustered together. These were impairments of social interaction, impairments of social communication and impairments of social imagination - the ability to feel for other people. But these impairments we found could occur in a very wide range of different manifestations. Finding this - finding the range in which these things could be shown put us on the path of suggesting instead of neat categories there was actually a whole spectrum of disorders that were characterised by these three impairments but they were spread over a wide range of manifestations. Ìı YATES Using this broader definition of autistic spectrum disorders the study estimated around 20 per 10,000 children had some form of the condition. Research also led to the introduction of the term Asperger's Syndrome, in 1981, named after Hans Asperger, an Austrian psychiatrist, who described similar symptoms in a widely overlooked paper published as it had been in German just after the Second World War. And despite Lorna Wing and Judith Gould's apparently startling research autism itself was largely overlooked by the general public until it shot into mainstream consciousness with the release of the film Rainman in 1987. And public awareness of the condition was given another shot in the arm in 1998. Ìı TODAY PROGRAMME CLIP The injection designed to protect against mumps, measles and rubella - MMR - has come under attack again in recent weeks after a report that some doctors thought there was a risk in some children of autism as a result of ... Ìı YATES Although a series of subsequent studies has failed to find any link with MMR the controversy has served to focus minds on finding the causes of autism, as well as on establishing whether there has been a big rise in incidents of the condition rather than just an increase in diagnoses. Lorna Wing again. Ìı WING I certainly don't believe that there's a big increase, whether there's a very, very small increase it's impossible to say but what I can say is that increasing awareness has had a huge effect and setting up services encourages people to make diagnoses. Ìı YATES In terms of the causes of autism we know more than we did but the picture's still not clear. We know that genetics play a part and a link has been established with thalidomide and with rubella in pregnancy. Professor Jean Golding heads a team at Bristol University which is conducting a wide ranging investigation into the causes of autistic disorders. She says they're not ruling anything in or out. Ìı GOLDING If it's true that autism is increasing in prevalence then it's got to be something that's changed quite radically in the last 20, 30 years. Now our diets have changed radically, so that's one possibility. There are many others but that I think I would imagine might be the most positive to look at. Ìı ROBINSON Professor Jean Golding ending that report by Will Yates. Ìı Well Dr Judith Gould is with us, she's played her part in the history of describing autism, as we heard in Will's report, she helped develop the idea of a spectrum of autistic disorders along with her colleague Lorna Wing. She's a consultant clinical psychologist and director of the Centre for Social and Communication Disorders which is run by the National Autistic Society. Ìı Dr. Gould before we try to unpick more of what was in that report how would you go about today making a diagnosis of autism? Ìı GOULD Well you've gathered it is a very complex condition with many different manifestations, so it's not an easy task. The most important thing is to take a full developmental history from birth onwards, asking the right questions and then formulating with the result of all that information in order to make a diagnosis. We have developed a diagnostic interview called the diagnostic interview for social and communication disorders - which is a mouthful, with the acronym DISCO, which you can imagine does cause much amusement when people come for training - DISCO training. But using this particular method we feel that helps clinicians to make a correct diagnosis. Ìı ROBINSON So what sort of questions are you asking then? Ìı GOULD Well we start right from infancy, almost pre-birth really, but starting in infancy, those early signs are key signs of perhaps sharing, the jargon term is joint referencing - that is wanting someone to look at what you're looking - or the child is looking at. Sharing in that way, not just sharing special interests but having a view of the whole environment and wanting to be with another person - it's the social instinct that is the key to the difficulties within autism. Ìı ROBINSON How can you assess whether or not an infant has imagination? Ìı GOULD Ah well that comes very early actually, again between 12 and 18 months you are able to through pretend play you are able to make some sort of estimate of whether the child has imagination or not. Ìı ROBINSON What about late onset autism, which we hear and read about, where children, their parents believe, are completely normal and they start to talk and then at some point they regress, the novelist Nick Hornby has described his son as suffering a regression like a computer crashing? Do you think that the autism in those cases was always there? Ìı GOULD There are differing views on this, I would think that it is there and then something perhaps triggers in some way. When we - when we go through questions through infancy with parents we see some of the things that they perhaps haven't recognised and I think, as Charlotte said, you get used to things and you don't notice but when you have an outsider coming in and asking specifically about the early pre-language development and play I think usually there's something you can pick up. But not always, I can't say - not always. Ìı ROBINSON Paul Shattock is director of autism research - the Autism Research Unit at Sunderland University and he has an autistic son Jamie. We heard there from Lorna Wing that she thinks if there is an increase in autistic syndrome disorders it isn't a really sharp increase, what do you think? Ìı SHATTOCK The first thing I have to say is that it is perfectly possible for people to look at the same data and come up with different opinions about what it means, as you can with football teams or politics - you look at the same facts and can conclude different things. I have to say that I do believe that there is an increased awareness and understanding and the parameters have been extended a little bit to what is autism. But in spite of that I do believe there is an actual increase in the incidents that's going on. There seem to be so many children around now, when you go to schools and talk to psychologists - you get the hands dirty - there do seem to be a lot more around. Ìı ROBINSON Couldn't that just be down to the politics of putting children into mainstream schools more often, so that where we didn't used to all know someone with autism now there tends to be one or two children at nursery or at school? Ìı SHATTOCK Part of it could be that, in fact it all could be that, but I don't actually think it is. It's just when you go to - around the country to talk to the infant school teachers and there's so many have got one or two or three children coming through the system and I do not know whether there is an increase in the incidents and that is in fact what the Medical Research Council said at their big report, they said - We do not know whether there is a big increase. I personally believe that there is. Ìı GOULD Can I just sort of come back to a point, that you said you wanted to unpick some of the facts, a point I really must make is that Leo Kanner, hearing him yet again say that he never blamed the parents. Ìı ROBINSON Well I want to come on to that because I can remember only 20 years ago when I was young knowing a woman who had two autistic children and there was a television documentary and she was part of it and the theory then was that these children had suffered a trauma in infancy - sometimes the birth of a sibling - and that if you only were to hold them and love them enough and Kanner himself, I'm told, described the mothers as being intellectual and remote. Did you ever believe that theory yourself? Ìı GOULD Not at all, no. Ìı ROBINSON Really, really, really? Ìı GOULD I really promise you no, not at all, no. It is a biological condition and much to my distress this is somehow coming back again with blaming parents in regard to child abuse. And again it's the - I'm afraid it is the ignorance of professionals ... Ìı ROBINSON Or is it desperation you see because if you're a parent and there's an incurable condition maybe even if you think that you're to blame but if by holding the child for four hours a day you can put it right, perhaps you'd rather think that? Ìı GOULD Yes, well that's what's so terrible about the whole thing is that parents are pushed into different - and we're going to be talking about different interventions - but pushed into different methods of - and there's this feeling that if I don't do this somehow I'm not going to help my child, I don't know what Charlotte feels about that but this is the sort of worry we have about untried, untested interventions. And holding therapy was one such thing years back. Ìı ROBINSON Charlotte? Ìı MOORE I think a lot more research obviously needs to be done on the efficacy of different interventions. I've tried various interventions on my two children with very different results in each case and I think that's something that needs to borne in mind that, for instance, Sam, my younger son, is on the gluten and casein free diet and that makes a huge difference to his wellbeing. But George isn't on that diet. Each autistic person is different, it's very complicated. But I would also just like to add there about this business about blaming parents - though autism is not a disease, it is a condition with some physical manifestations and I know that both my children experience the world physically very, very differently from the way I do it or from the way Jake does. And it's quite hard to see how the way a parent behaves can affect the child's physical reactions to the environment. Ìı ROBINSON Luke, has you heard these theories that it's the way children relate to their parents that may have created their autism or Asperger's - as we were just hearing the theories are no longer believed - what do you think? Ìı JACKSON I think it brings up the whole nature or nurture argument and to be honest I think - or just to use my mum as an example - there's absolutely nothing wrong with her upbringing. Ìı ROBINSON What about your own though - what about the way she brought you up? With your upbringing right, right. Ìı JACKSON Yeah, then and Joe and me are all on the autistic spectrum. As well there's so many physical symptoms which however mum brought up like me and my brothers then these symptoms couldn't be imposed on to us. Ìı ROBINSON Dr Gould, when it comes to the causes of autism obviously these are the big questions about so many conditions, disorders, illnesses, that we try to address, tell me what are the current theories because in reading for this programme I heard that identical twins don't necessarily both turn out to be autistic, so it can't be the genetic inheritance alone can it? Ìı GOULD That's right. I mean to start with really it is an unusual pattern of brain development - whatever - we're very quite certain about that but certainly the genetics, the complexity of the genetics I think is important and again going back to what Charlotte said with having more than - and also with Luke - having more than one child in the family with different manifestations. And it is fascinating where you have identical twins and we know two sets of identical triplets and they all manifest the condition in different ways ... Ìı ROBINSON They're all autistic? Ìı GOULD And they're all - well two in fact - if we were going to sub-group into two Kanner like and one Asperger like then obviously the genes - it's not straightforward that it is a genetic thing, there have got to be some possible environmental additional difficulties that - well this is what the research is looking at which is fascinating. Ìı WINIFRED Okay, just before we go to the Health Minister, Paul Shattock, what might the causes be then, if we have a genetic predisposition, what might the environmental factors be? Ìı SHATTOCK I think we're talking about genetic fragility, genetic predisposition and with different individuals it'll be different genes that are involved. Therefore some of them will be the same but there also be a whole variety of environmental triggers. Ìı ROBINSON What might they be, just list a few that are being considered, we heard about diet. Ìı SHATTOCK I think it could be the food has changed, we're eating totally different food to what human beings should be eating. The pattern of infectious disease has changed dramatically, we're now much cleaner than we used to be as babies. And then we're suddenly injected with a whole series of infections in strange sequence and a small number of people, perhaps 5-10% of parents allege that the MMR vaccine is a factor, it still needs to be investigated further. Ìı ROBINSON Well it has been investigated and no link found thus far. Ìı SHATTOCK I think there's rather more to it than that, I didn't really want to discuss this issue ... Ìı ROBINSON No, no that's another programme. Ìı SHATTOCK But we do feel there's a lot more to be said on that issue. But our own work at Sunderland is largely based around pesticides, the whole environmental pesticides has gone up dramatically since the '70s when we switched using some older fashioned ones to much more potent ones which may be having serious effects. Additives in food, who knows, mobile phones - anything - we have to look at everything that's changed and tease them apart. To me one of the shame - the unfortunate things is that all the obsession is on genes and virtually all the money - 80-90% of all the research money is going looking at genes rather than looking at the other chemical factors that may be involved. Ìı ROBINSON Steven Ladyman, there's obviously fierce competition for government funding for research, I suppose it then boils down to how great a priority's placed on the understanding of autism? Ìı LADYMAN You're right, we leave these decisions to the scientists, we leave decisions about what research is done to the Medical Research Council and of course they're dependent upon people coming to them with good well thought out studies that they can fund and at the moment they are putting a considerable amount of effort into studies related to the genetic background to the disease, which is, as you've - your contributors have just said is very complex, it's not a simple genetic disorder, it probably involves six or seven different genes. Ìı ROBINSON And what's your own take on the question of whether there is more autism than there used to be? Ìı LADYMAN Well I have no more insight into it than everybody else who's contributed. My own guess is that the vast majority of the increase is down to increased awareness and there is probably a very small underlying increase as well but that's only my guess and it could all be - it could all be down to increased awareness or there could be a much bigger underlying increase than perhaps some people are predicting, so none of us really know. Ìı ROBINSON Okay well Minister stay with us if you would, Peter. Ìı WHITE A slight change of gear perhaps to look at the way autism is seen and what we base that on. As we mentioned in passing earlier the film Rainman marked a sea change in public awareness and attitudes about autism. Since then autistic children and adults have appeared as characters in a number of films, books and TV programmes. The idea of an autist as a kind of silent witness cropped up just last week in ITV's Blue Murder, only this time with a twist - the autistic boy turned out to be the murderer. But are these fictional representations helpful in our understanding of the real condition? Stuart Murray is the father of two boys with autistic disorders and he's also a senior lecturer in literature at Leeds University. This is his take on the issue. Ìı MURRAY Without doubt it was the release and success of Barry Levinson's film Rainman in 1988 that marked the breakthrough of autism into mainstream public consciousness. The film dramatises the ways in which the autistic Raymond Babbitt, played by Dustin Hoffman, humanises his self-centred brother Charlie, played by Tom Cruise. Rainman established several themes that became central to subsequent representations of autism. Firstly, autistic characters are frequently paired with neuro-typical characters who are in some way troubled, isolated or eccentric and the space between the two becomes one in which an idea of what it means to be human is then explored. Interviewed about working on the film on the Today programme in 1989 Hoffman noted how he and Levinson felt they were presenting a relationship that was above all about an idea of common humanity. Ìı HOFFMAN It was never about autism, that was just what the character had, but we never wanted to make a documentary about autism, we wanted to in a sense honour the disability and not be fraudulent about it. Barry Levinson, the director, always wanted this film to be about the inability of all of us to really be able to connect with each other. Ìı MURRAY In addition Hoffman's character is a high functioning autist with clear savant skills and nearly all of Hollywood's depictions of autism feature some form of prodigious savant skill. In the 1998 film Mercury Rising a nine year old autistic boy called Simon deciphers the US government's secret mercury defence security code through his ability to decode word puzzles, as a result his home is attacked and parents killed as the authorities search for him and he's only saved by the relationship he develops with a renegade and dysfunctional FBI agent Art Jeffries played by Bruce Willis. Ìı There is clearly something fascinating in the mystery of the figure of the autistic savant, yet it's worth stressing that by far the majority of autists have no savant ability whatsoever. In films and literature the savant figure becomes typical. More than anything in such plots the autistic character is used as a narrative device, as a way of solving a riddle or pointing to a problem. What comes over time and time again is the desired humanising presence of the autistic figures, it is the antisocial and egocentric Tom Cruise character in Rainmanand the renegade Bruce Willis in Mercury Rising who learn and are changed by their encounter with autistic difference. Ìı Another theme to emerge is the use of an autistic man or boy to explore the relationships that men construct between themselves. In Simon Armitage's novel Little Green Man a wayward father, Barney, is confronted by the challenging behaviour of his son, Travis. In this scene Barney photographing Travis catches himself looking at him through the camera's viewfinder. Ìı READING - LITTLE GREEN MANI studied his features, noticed the smallness of his mouth and his dry bloodless lips and a strain across his forehead and the tiredness under his eyes and a tension in each eye, enclosing or guarding a darkness, there in the pit of the eye that could only be fear. He was peeping out of his own head, not looking with his eyes, but looking out from somewhere behind. That blackness, when I found it in the lens, made me jump, as if I'd lifted a stone. Such a contrast as well with his face - not flesh coloured at all but white in the proper sense of the word, without colour or shade. Ìı These ideas of the individual trapped within or somewhere behind, the notion of autism being a kind of curtain that descends on to an individual are frequently invoked in contemporary fictional accounts of the condition. They're fanciful of course, autism isn't simply an add on to an already existing character, something that can be broken through to reveal a more authentic self. Ìı Mark Haddon's novel The Curious Incident of the Dog in the Night-Time is different. Arguably it still contains elements that might seem to stereotype autists but whereas so many of the other accounts talk for or about autistic individuals in Haddon's book the voice is that of Christopher Boone, age 15 and with Asperger's - a form of high functioning autism. Christopher's narrative is very much from the inside of the condition. Ìı READING - THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIMESiobhan says that if you raise one eyebrow it can mean lots of different things. It can mean I want to do sex with you and it can also mean - I think that what you just said was very stupid. Siobhan also says that if you close your mouth and breathe out loudly through your nose it can mean that you are relaxed or that you are bored or that you are angry and it all depends on how much air comes out of your nose and how fast and what shape your mouth is when you do it and how you are sitting and what you said just before and hundreds of other things which are too complicated to work out in a few seconds. Ìı Fundamentally autism is a reminder of the diversity of the very condition of being human. In reminding us that he is most of all himself and that he can be funny and frightened and calculating and difficult and precocious Christopher does what so many other representations of autism do not - he makes it clear that his individuality is as vital and as normal as that of anyone else. Ìı WHITE Stuart Murray. Luke, you've read The Curious Incident of the Dog in the Night-Time and you have Asperger's and you're 16, much like Christopher, what did you think of it? Ìı JACKSON Well I thought it stereotyped - well I thought it stereotyped people with Asperger's in many different ways, the biggest being the common factor in books like this that the Asperger's person has savant ability. It did, as you said, it did something that other books haven't and actually giving the AS person a personality. Ìı WHITE Did the whole business of questioning - because a lot of it was about the way in which Christopher would answer questions if they were literal but he wouldn't answer vague comments - does that square with your own behaviour, your own attitude, was that accurate? Ìı JACKSON Umm in many ways it was. And I was told so by my sisters. Ìı WHITE Mum agrees, mum agreed. Charlotte Moore, you read this too, what did you feel about it and what do you feel about fictional representations generally, do they help, have they got a contribution to make given that you said yourself you can't generalise? Ìı MOORE Yes I think it's helped enormously in raising awareness, I would echo Luke's criticism about perpetuating the myth about they're all savants ... Ìı WHITE Christopher got straight As in maths. Ìı MOORE But having said that - I also would like to point out that Mark Haddon at no point uses the term Asperger's or autism, so he shouldn't really be held to account for being a spokesman for autism because that's not what he's trying to do. He is a novelist and I think he's very cleverly using Christopher's truth telling, Christopher's inability to lie, as a sort of narrative device. So Christopher tells us, the reader, exactly what's happening but Christopher can't edit the important details out for us, so with - as readers - we're forced to do that editing ourselves and we draw our own conclusions about what's going on in the lives of the people around Christopher - his parents and neighbours and so on. Ìı WHITE Charlotte, Luke thank you. I'd love to pursue this further but we must press on. Ìı ROBINSON You're listening to You and Yours on Radio 4 and this is a special edition of the programme devoted to the subject of autism. So what help is available if you're the parent of an autistic child and how easy is it to get the kind of help that you want? Ìı We've been hearing from Charlotte Moore, her two sons attend a state school for children with autism and there they've been benefited from a system of education called applied behaviour analysis ... Ìı MOORE Sorry can I interrupt? Ìı ROBINSON Yes do. Ìı MOORE No they don't - they do that at home. Ìı ROBINSON Oh they do that at home, right and at home then they benefit from applied behaviour analysis. As I understand it their behaviour's broken down into small chunks and then there are instant rewards for getting it right. Ìı MOORE That's how the therapy starts yes. Ìı ROBINSON But many parents who want this approach for their children have a big battle on their hands. Sarah Siegle [phon.] has three autistic sons and the family live in Mortlake in West London. Ìı SIEGLE The first year we had to fully fund ourselves which cost us about Ã‚Â£25,000 per year per child and then you've also got the fact that no bar one LEA in this country will fund a home programme. So every parent that wants any funding from the LEA has to take their LEA to a tribunal. You have to pay all your court costs for that, which you aren't given back and you aren't given back money that you've spent. So it's a dreadful situation in this country that the only parents that are accessing this and can do this for their children are those who can mortgage, borrow, beg the money to actually set the programme up. Ìı ROBINSON Sarah Siegle. Well Health Minister Steven Ladyman is still with us from the Department of Health. They sound very like those mothers that you mentioned at the beginning visiting you in your constituency trying to get help and being unable to do so. Ìı LADYMAN Absolutely right, I've called them in speeches "bag ladies" because every MP knows the bag ladies that come into your constituency surgery and the bags are the letters that they've had to write over the years to try and get the services that their child needs. So you're absolutely right they're very typical of the sort of people that MPs will be seeing. Ìı ROBINSON And in the 10 years that you have now been in politics, which isn't very long I know, but how much has changed would you say to improve their lot? Ìı LADYMAN I wouldn't go so far as to say that the change has been dramatic. I think there are things in place now which are changing gradually. The most recent of them of course - the National Service Framework for Children's Health, which we produced just last week and which over the next 10 years will make a dramatic transformation in the way that we attempt to identify autism early and start to intervene early. But there's also been other initiatives - the National Autism Plan for Children, the initiatives by the Department for Education and Skills to try and make sure that every LEA starts to understand autism, starts to put in place mechanisms for helping autistic children. Ìı ROBINSON Charlotte Moore, the National Children's Service Framework and setting out as it does best practice for autism, what do you make of it? Ìı MOORE I welcome it and I particularly welcome the fact that out of all childhood disabilities and problems autism is one of only two exemplars - the other being asthma. So we're very happy that that puts autism firmly at sort of centre stage. But it all comes down to funding again and yes the exemplar, the imaginary autistic child who's actually called George, that the National Service Framework uses and it plots his life through from early worries through to sort of school leaving, if that imaginary George - if an autistic child got everything he got then that would be fantastic but there are, as far as I can see, no dedicated resources to make sure that that happens. Ìı ROBINSON Paul Shattock. Ìı SHATTOCK I think the situation is a lot better than it was when my son was little. In fact I produced a plan, a model scheme for people with autism in the North East of England some years ago and I did a talk on it earlier this year and I was a little bit embarrassed because most of the things on it were actually being done. Ìı ROBINSON How lovely. Ìı SHATTOCK Yes I know but I think I come from Sunderland and I'd give them a bit of a clap for that, they've tried really, really hard to get a plan going, designed by the parents and the professionals together. I think the real problem is that if you are pushy, aggressive, middle class assertive parents you get these things, if you are poor and not you don't get them. And I think the Government's actually just swamped with sheer numbers coming through the system at the moment. Ìı ROBINSON Steven Ladyman, the approach now is to try to include autistic children in schools and nurseries so far as possible, I can see obviously that that is cheaper than providing a teacher at home or building a special nursery in a special school but cheaper isn't necessarily cost effective is it. Ìı LADYMAN No it isn't and it's not done because it's cheaper, it's done because including children with any form of disability tends to help them to become better adjusted than ... Ìı ROBINSON Well just you see round the table here heads are shaking - heads are shaking. Ìı LADYMAN Let me just - let me just finish what I was saying. In fact what the Government wants to achieve is for people to be educated in the best environment that suits their condition. Now for most I think that will be with special help in a mainstream school but there will always be some where very clearly it's going to be a special school environment or even support at home, which is going to be better for that child. And I think what we're trying to get to over the next few years is a situation where we are actually delivering according to the needs of the child and not from some sort of pattern that we've just assumed is right for everybody. Ìı ROBINSON Dr Judith Gould. Ìı GOULD Yes I'm breathing very heavily. Yes I do wish it was like that but in fact it is not like that. The families that we see, we diagnose, people who ring our help line, the National Autistic Society - there is not choice, it's ideological and people are not accessing the appropriate education they need. Ìı ROBINSON When you say it's ideological you mean the business of putting children into mainstream ... Ìı GOULD All into mainstream, yeah I do, I feel very strongly about it and obviously Charlotte feels that too. Ìı MOORE Yes I do, I think there's a fundamental misunderstanding, I think the really important thing to understand about autism is that it is a social disability and a communication difficulty and too often able high functioning intelligent autistic children are pushed into mainstream simply because they can keep up academically and this overlooks the absolutely vital thing that we all know from our own schooldays - school is much more - success or failure at school is much more to do with social interaction than it is to do with academic intelligence. Ìı ROBINSON Steven Ladyman, could you reply to that briefly if you would? Ìı LADYMAN Well I think your panel there is trying to be too prescriptive as well and what we need to get to is a much more person centred approach. Now we haven't got that yet, I certainly accept that, but that's where we need to be and for some that will be an autistic unit in a mainstream school, for some it will be a mainstream school with special help, for some it will be a special school and for some it will be support at home and that's where we have to get to over the next few years. Ìı ROBINSON Okay, well we'll have to leave the discussion there. Thank you all very much for taking part. And that is it from You and Yours for today, as we mentioned at the beginning we're going to be including reports about autism all of this month and we'll be looking at, among other things, what happens to autistic children when they grow up and what provision is there, if any. This week we're going to be looking at relationships between people with autism and those closest to them and tomorrow one of the problems that people with Asperger's Syndrome have is understanding what people mean by what they say and we're going to be talking to the author of an Asperger dictionary. Ìı WHITE We're also going to be looking at education too, we feel that argument should be pursued more. On tomorrow's Call You and Yours we'll be looking also at the issue of bullying in the workplace and that'll be our phone-in - what can be done to prevent it happening in the first place and how can it be addressed in a way that's fair to all? Do call us with your experiences on 0800 044 044 or you can e-mail us on the website but do leave us a phone number so that we can get back to you. That's it for today thank you. Ìı Back to the Transcripts homepage Back to the You and Yours homepage The 91ÈÈ±¬ is not responsible for external websites

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