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	TX: 29.10.04 -ÌýAutism Sum Up PRESENTER: PETER WHITEÌý
	Ìý 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 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. Ìý Ìý WHITE More than half a million people in the United Kingdom have autism and the numbers of diagnosed cases is rising. Thousands more family and friends are affected by it. Now all this month we've been exploring this puzzling condition - we've yet to understand its cause, there's no cure and people with autism may have a variety of learning difficulties, which can range from an inability to speak to demonstrating very challenging behaviour but who can also show very creative insights. During the month we've covered the key issues, including education, interventions, diagnosis, non-diagnosis, residential services, provision for adults and regional variations in funding. Here's a taste of some of the people we've spoken to. Ìý MONTAGE Not many people can understand me. Some people say I have a weird accent, also I have a rather wide range of vocabulary, words that they don't understand. Plus I can spell long words, such as difficulty or photosynthesis or words like those. Ìý Ìý I am Helen, I see all the words in my head but they don't come out of my mouth. Perhaps an odd word is right but most of them are missing Ìý My daughter Helen is eight years old now. Her major source of frustration through her autism is the fact that she can't speak. Ìý I really wanted to speak and I knew that I wasn't hearing everything properly because I couldn't always say words and work out how to speak so people can understand me. Ìý Ìý Fly winner. Ìý Fly, flies ... Ìý Ever so ... Ìý High. Ìý The mother of the person that loves their child isn't necessarily loved back, the mother is a tool for getting what the child wants. So mother is dragged to the fridge to get the food because mother is the means of getting the food or the things that are needed, rather than mother is the person you love. There's a rejection that is also difficult. Ìý Ìý The first year we had to fully fund ourselves, which cost us about £25,000 per year per child and then you've also got the fact that no, barring one, LEA in this country will fund home programme. So every parent that wants any funding from the LEA has to take their LEA to a tribunal, the only parents that are accessing this and can do this for the children are those who can mortgage, borrow, beg the money to actually set the programme up. Ìý Ìý The panic that I go through of thinking he is just so vulnerable, he's very naïve, he's a lovely, lovely boy but he doesn't realise the dangers that there are. I've just been out in Oxford Street with him just now and I thought I'd lost him in Selfridges and he's always going to live with that. Ìý Ìý We went to a party, I knew maybe one or two people there at most. After half an hour I ended up sort of running out and going and sitting in the car because I just couldn't - I just couldn't cope with it anymore and you see the big problem is when I go into a situation like that I see all these people, many of whom probably don't know each other that well, actually all making conversation and appearing to get on quite fine with each other, I just don't have the ability to fit in in that kind of situation. Ìý WHITE Just a hint of the range of voices we've heard over the last four weeks. And we've had an enormous response from you - some 600 people have been in touch by e-mail and phone and post. And today we conclude our investigation by putting some of your concerns to Health Minister Stephen Ladyman. His current brief includes autism but it's something he's taken a particular interest in for the past 10 years, he's also a former research scientist. Also here again is Judith Gould from the National Autistic Society, Sam Hall who has two children with autism and Keith Duffy who also has a daughter with autism aged four and a half - Keith is in Manchester taking time out from filming in Coronation Street. Ìý One of the biggest responses from you has been about education. The majority of people with autism are in primary school at the moment and while some children attend specialist autism schools or mainstream schools with autism units, most with autism are educated in ordinary classes, sometimes with learning support assistance. But we've discovered that in practice funding is an issue and we came across examples where some children who have learning support assistance are finding that their hours run out, that meant that they were sent home from school early. Headmistress Amanda Dennison from Millennium Primary School at Greenwich in London told us how one autistic pupil, Karame, has his hours topped up by the school because his statement does not make provision for a full week's lessons. Ìý DENNISON He gets nine additional hours a week above what's recommended on his statement and that comes out of the school budget and if you take into account the high percentage of special needs children that we have at the school many of them don't come with enough additional hours, we feel, to cover all their needs, so it eats into the main budget of the school quite dramatically. Ìý WHITE Stephen Ladyman, let's go to you on that straightaway, I mean that looks like that under-funding of specialist support is taking place. Ìý LADYMAN Well certainly there seems to be a problem with that particular case and that sort of thing shouldn't be happening. Ìý WHITE And we have had lots of other examples, I gave you an indication of the amount of reaction we've had. Ìý LADYMAN Yes, no I concede that entirely and I think one of your earlier programmes Lord Filkin, who's the minister for special educational needs, did say he'd be looking into some of these issues over the next few months. But I think - I think the message I'd give to anybody out there that's having these sort of problems is that it's very important that people's extra support needs are being catered for and that the right amount of funding is being provided and schools and local education authorities and parents need to work together to try and resolve these issues and if necessary parents shouldn't be afraid to go through the SEN tribunal route and force local education authorities to provide the right amount of resources. Ìý WHITE Can I give you some examples of the things we've heard and Sarah from South Wales says her autistic brother found mainstream teachers were frustrated by his condition but no place could be found at a specialist school, so he was eventually educated at home. And we've also heard from Ann Howard Hughes who told her that her son with Asperger's was facing exclusion from his mainstream school, now he's at a special school where, as she puts it, he's much more likely to have a future where he's included because he's now being properly educated. It sounds as if - for a lot of people - and we touched on this in the first programme - inclusion isn't working, mainstream teachers are being expected to teach children who they feel should be in a school with specialist facilities. Ìý LADYMAN You say for many people it isn't working and the message that I gave in that first programme, which I repeat now, is that we should try and get the right sort of education for the individual, we shouldn't be dogmatic about saying that children should be educated in mainstream school or that they should be educated in specialist school, we have to decide what is right for each individual child. And where a child's mainstream education isn't working and a specialist provision might become more appropriate they should be moved. But the National Autistic Society did a survey a couple of years ago of parents whose autistic children are in mainstream schools and actually found I think it was 84% of them said that they were happy with that provision and 70 odd per cent thought their children were actually doing very well there. So it's horses for courses, we need to get the child in the right provision for that child. Ìý WHITE Let me bring in Judith on that because you spoke very strongly about your reservations about mainstream schooling for some - for a lot of children. How does that square with those statistics that Stephen's just given? Ìý GOULD It's very useful to use statistics in the way you wish but maybe I'd like to also point out another statistic that in fact the number of children excluded from mainstream with autistic spectrum disorders is 21%, as opposed to 1.2% of the typically developing kids. And in fact the more able children - 29% of them are excluded. And there are also hidden exclusions, and I think you've touched on that, that sometimes over lunch breaks when the LSA has to have a break him or herself ... Ìý WHITE That's the assistant. Ìý GOULD Yeah, sorry. And the fact that the parents then have to come in and actually take the child home for lunch. Ìý WHITE Just to bring Stephen back on this finally. The word dogmatic was mentioned, I mean can you give us a guarantee that the government and perhaps more particularly local authorities won't be dogmatic about this, that they will look at it on each individual case? Ìý LADYMAN That's certainly the policy of the government, that's what we've set out in all the codes and the directions and the guidelines that we give to local councils. We want the right provision for the right child. And of course things can change, you can start off in a mainstream setting and find it's not working out or needs change and then it's right to move to specialist provision. Equally a child might be doing so well in specialist provision that parents decide they'd like to actually try a mainstream provision because all we say is that you shouldn't be excluded from mainstream provision if that's what you want for your child. Ìý WHITE We'll come back to you both on related issues in a moment, including this one which is the whole issue of funding because funding for treatment and interventions was another area that concerned our listeners. Yvonne Willington wants to ask: Why is it that the needs of your child can only be met after a battle with the LEA? That's fine - she says - for articulate parents but what about those who find bureaucracy daunting or impossibly confusing? And not only that - she says - there are also more transitional battles at ages 16, 19 and then as you try to access adult services. These regional variations are illustrated by a recent case in Northern Ireland where Ruth Murray became the first person ever in Northern Ireland to secure funding for an educational intervention called applied behavioural analysis - or ABA - which costs about £25,000 a year. Ìý MURRAY We don't have a lot of money but we do have a house and we do have some money to fund it. Other kids in this country don't have any and basically down south they have now eight schools - ABA schools - and they will have 12 by next June and Northern Ireland have absolutely none. It's just disgraceful that the education boards and the education system in this country won't accept ABA, they're just basically ignoring that and ignoring all the research that shows this is the best education system, the best for autistic children. Ìý WHITE Ruth Murray. Well Keith Duffy, actor Keith Duffy, has a four and a half year old daughter who has autism. Keith, first of all just tell us a bit about her and how you arrived at her diagnosis. Ìý DUFFY Well basically obviously we were very young parents and you get sent home from hospital with your wife and baby doing great and everything's great, you've got fantastic plans for your child until such time as the child might be 15, 16 months of age and there are certain things are happening to make you aware that maybe something could be wrong. In our particular situation we kind of thought our daughter might have a hearing problem because she wasn't responding very well to us speaking to her and so forth and obviously there was a language delay there as well. Basically what we did was we bothered to get a hearing test done, which is quite common in this situation, people do kind of think that it might be a hearing problem. So we went ahead and we were told that our daughter's hearing was perfect. So obviously we had another problem and we didn't know exactly what it was so we had to kind of go and find out for ourselves what we had to do. Ìý WHITE Now your daughter lives in Dublin, where I think provision is pretty good, but you're now spending a lot of time fundraising to match that type of provision. Ìý DUFFY Yeah well don't get the wrong idea, it's not good in Dublin, we have fought - the parents of all the autistic children in Dublin and indeed in Southern Ireland have got together and we've fought and we've fought hard, we've brought the board of education and the board of health to court and we've been successful and they annually fund our school. But it's not a perfect situation because the school is called a project, the teachers are called tutors for some sort of union problems and basically we're not told until August whether the school is going to be further funded for the year. And in union rules we have to tell the tutors in March whether they have a job to come back to the following September. So these teachers I believe - I think they've had a calling you know, these teachers do not work for the money, they work literally for the actual - the gain of watching these children succeed in life. Ìý WHITE But in Northern Ireland - you're trying to set up schools in Northern Ireland I think. Ìý DUFFY Well basically what's happened is because I've been so involved in setting up - basically there was a school teaching ABA called [indistinct name] in Dublin, which is an ABA school, and there was only 12 children in the school and obviously what ABA is, for people that don't know, it's a one-to-one teaching programme, the concentration levels of an autistic child can be all over the place from time to time, where you can hear me talking to you now you can also hear the sounds that are going on around you but you're able to concentrate on what I'm saying to you, autistic children can hear all the sounds where they're amplified to maybe the same level so it's very difficult for them to concentrate. So in a special needs situation, where you might have a ration of 8:1 kids to a teacher in a situation like that, an autistic child in amongst that might be able to concentrate on what the teacher's trying to teach. So this is why ABA is so important and this is why - it's one-to-one, it's very expensive and this is why obviously the Department of Education is not funding this on an everyday basis. Ìý WHITE I want to put the implications of this to the minister, by the way I recognise that Northern Ireland isn't specifically part of your responsibility but it's this regional variation which is surely - hang on a minute can I bring in Stephen Ladyman because I want to get answers for you as well as questions and you made the point Stephen, yourself, that it's very difficult for - we heard people - you said go to your local education authority, go to tribunals if necessary, but that takes a lot of bottle and a lot of time and a lot of articulacy doesn't it. Ìý LADYMAN It does and you may have heard me talk about what I call bag ladies before - bag ladies are the people who come into MPs surgeries and it's mums of autistic children with bags full of letters where they've had to fight for all of these services. And that's one the things we've said in the National Service Framework for Children we want to stop, we want to try and join up all these services. So far as ABA is concerned, I entirely agree, in England we did a survey, when I was chairman of the all party group, and we actually found about 90% of LEAs now will provide ABA if they think it's appropriate. But in Northern Ireland the Department of Education there have recognised in fact a year or so ago that there's a difference between the number of people they know about having autism and the number that there almost certainly are in the population and the provision for them is inadequate and they have a programme in place over the next year or so to try and do something about that. Ìý WHITE I want to give you a suggestion from Sheila Thorpe, who got in touch with us, she says: Stephen Ladyman might like to consider funding ABA as a coordinated approach with the education minister because the short term costs make sense when compared with the long term costs of lifelong dependency on the state. So Stephen, why not? Ìý LADYMAN I think the principle that early intervention and helping children early was going to save us money later on is absolutely right and it's exactly what we say in the National Service Framework, it's what was said in the National Autism Plan for Children and the National Service Framework built on that and that's exactly what we're going to try and do over the next few years. Ìý WHITE Okay, Keith Duffy, very quickly, I'll come back to you later but you know funding isn't a bottomless pit, what would you like to see? Ìý DUFFY Well basically I think - I mean let's get back to brass tacks. At the end of the day what we're looking for here is education for our children. Every child deserves an education, okay, whatever kind of education that demands every child is entitled to education from the state. And we have proven - it's been proven time and time again that ABA - one-to-one teaching - for an autistic child - definitely is the way forward, it does work, so why can't we just get back to kind of brass tacks, for want of better words, and just provide this provision for these children? I mean as far as I'm concerned it's simple - I'm opening by force - I'm helping a charity called SPEAK in Northern Ireland which is special provision for the education of autistic children and I've been fundraising for the last couple of years, along with the other parents in Northern Ireland, and we're hoping to open our first ABA school in March next year. But I mean our statistics state 7% of the government funding for autistic children or autistic people only 7% of it goes towards education, 93% of it goes to health and residential care. Ìý WHITE Okay, I'm going ... Ìý DUFFY Which basically - a lot of the time means sedating these people to a chair instead of educating them. Ìý WHITE I've got to move on to another area but I think we may hear more from you a little later because during this series we've also been inundated by people worrying about the lack of services for adults. For example, one listener e-mailed to ask: What's anyone doing about increasing the level of good residential provision? She suggests the answer is little or nothing. Something needs to be done - she says - before all our children become adults with nowhere to go. We were also contacted by Dorothy Price who signs herself as a very tired mother of a 16 year old boy with severe autism and learning difficulties. After 14 years of receiving no help at all - she says she now gets a short break every six weeks but says this will stop when her son reaches 18 and becomes an adult. Please tell us what we should do then - she says. Judith, if I can just come to you first about that, what should they be able to do then? Ìý GOULD Well most definitely autism is a lifelong condition and it has to have an appropriate plan right through life. And of course the National Autistic Society runs all sorts of establishments where people can be totally requiring full care, right to supporting people who are relatively independent in their living. And this should be something that is a right for the individuals. As Keith's saying you're really trying hard to educate your children very early on and then to lose all that progress by then providing no services really is morally indefensible. Ìý WHITE Minister, we were always going to talk a lot about money, inevitably, but the fact is autism does not shorten life, it doesn't go away in the school holidays and you don't grow out of it, so what should people, like Dorothy Price, what are they meant to do? Ìý LADYMAN Well I entirely agree with the point - services for adults aren't adequate at the moment. Ìý WHITE Are you actually saying that you're knocking on Gordon Brown's door for money and can't get it? Ìý LADYMAN If you let me finish I can tell you that there's somebody even more important than me knocking on Gordon Brown's door over this and that's the Prime Minister, who has put his strategy unit to the task of writing a programme for how we can include and better support disabled people. I'm also writing a green paper, that'll be published probably in December, on social care for adults. And there's all sorts of things that we need to do and one of the points you made was about residential care, well yes that sort of provision needs to be available. But we can do an awful lot better as well helping people to remain independent and there are many people who can remain independent using things like direct payments. And I've met people with very severe disabilities, learning disabilities and other disabilities and autism who in those local authority areas where they've recognised the possibilities of independent living with support are actually now living independently. So there's a whole raft of things that we can do and we need to work very hard on getting them in place. Ìý WHITE Judith Gould, do people still sometimes think though that getting people living in the community is a cheap option when in fact it needs a great deal of support to make it work properly? Ìý GOULD Of course it does. I agree with Stephen that it's very important that we should be supporting people if they can live independently. But don't forget all the very profoundly disabled individuals, who need a very protective environment, where they have a consistency and structure in their daily programme which I'm sorry to say really I can't agree that it can be provided in the community, we need a range of options like we need for our education, different people have different manifestations of the spectrum and they have different needs and we have to have this full range. Ìý LADYMAN That's exactly right and that's exactly the point I'm making - we need a full range, but we shouldn't just assume that it's residential care, for many more people we can support them and I never said it was a cheap option, it does cost money, it takes a lot of work. Ìý WHITE No I didn't say you did. One of the problems is of course we don't actually know how many people have autism, partly because a lot of people are not diagnosed at all. We were contacted throughout this series by people who'd gone undiagnosed, sometimes for many years, 37-year-old Doris Dancer e-mailed us to say she was only diagnosed last year after years of being misunderstood. And Paul Way called to say he was finally diagnosed with Asperger's two years ago after he and his parents spent 37 years, as he puts it, trying to find out who he was. Well Sam Hall joins us, Sam has two autistic children and a newly diagnosed father with Asperger's. Sam, explain what happened because the diagnosis of your father happened when you went to get your children diagnosed. Ìý HALL It certainly did. Extraordinarily both of the children were born in exactly the same way as we've been explaining, you expect to get one sort of child and then you end up getting a very different sort of individual and you begin by wondering well my goodness what on earth is happening here. In terms of what Mr Ladyman's been saying it absolutely breaks my heart to hear him saying that everything has to be tailored individually for particular children and this certainly can be because if I'd had a pound for every time I'd heard that from an education officer I'd be a very rich woman by now. Ìý WHITE Just explain about your father though ... Ìý HALL Finally, by the time we actually got to the point of diagnosing the children it was quite clear that my father was exhibiting the same kind of difficulties that the children were exhibiting. Now we were able to put into place certain provisions for the children but once we got that far we didn't know what to do with dad, where do you go, what is your first point of call when you think that your father may have something like autism or Asperger's? We went to the GP who didn't know anything about it whatsoever and most of the GPs that I've spoken to actually have very little knowledge about ASD. Ìý WHITE And we should explain your dad was in his fifties wasn't he. Ìý HALL My father was 56 when he was diagnosed and we'd spent most of our life wondering why on earth he behaved in the way that he did. It was - he had the most extraordinary way of behaving and we'd been to the doctor many times with him wondering what on earth it was that was causing this, was it depression, was it a personality disorder? And he was medicated most of the time, that was all they could offer him was medication. Finally, they were able to offer him a diagnosis simply for the fact that the children had been diagnosed by the same person who was able to see my father but that was simply a matter of me pushing and begging that she would actually speak to my father and see if this was Asperger's, otherwise there was simply nobody to see him at all. Ìý WHITE And is he getting any help now on a regular basis? Ìý HALL Absolutely nothing at all. The only thing they can offer him is Respiredone, Seroxat and Valium - that's it, he's medicated, that's what my father lives on is medication. He has no support from any other service whatsoever, the only person who's able to offer him support is my mother and that's a full time job for her. Ìý WHITE Sam, thanks for the time being. Ìý One striking feature that has emerged during the series is the difference in abilities and lifestyles of people with autism. Yet they're all considered to be on what's called the autistic spectrum, which begs the question - is the idea of the spectrum helpful, either to the person with autism or the professionals trying to support them? Now Judith Gould you really I think came up with this concept - does it - given the huge growth in the diagnosis of autism, the greater understanding of Asperger's - does it still hold water? Ìý GOULD Absolutely. I must say Dr Lorna Wing and I working together over the last 30 years evolved this idea of the spectrum. The thing is you can't put people into neat categories, so in the very old days we had classic Kanner's autism and we have another category called Asperger's Syndrome but most people fit somewhere between those - they don't fit neatly into either of these descriptions. Ìý WHITE But you know don't you that people get upset when they hear, for example, about high functioning people with Asperger's because when their experience of autism is someone who can't talk, toilet, wash themselves and they wonder whether a lot of resources are being directed towards the more articulate as it were. Ìý GOULD Yes I know that is a point but I think that we really have to recognise that everybody has needs and the people with the Asperger's Syndrome who are more high functioning also require a great deal of support, as we were just hearing about Sam's father - it's a whole range. And it is impossible then to actually deny anybody any access to these services. Ìý WHITE Stephen Ladyman, does the spectrum idea help you or is the scale of the programme so daunting that it scares other people when you say I need help for this group which could be as big as half a million or more? Ìý LADYMAN Well it helps in the sense that it sort of makes my case for me as to why we need services tailored to individuals and both Judith and Sam have to some extent criticised me for the trying to fit services around individuals rather than having a one size fits all strategy. But when you're dealing with a spectrum like this, that ranges from Einstein at one end of the spectrum to people with very severe Kanner type condition at the other end of the spectrum, there is no alternative but to try and fit services to the needs of the individual. And to that extent knowing that it's a spectrum is helpful in understanding the way governments and local authorities have to try and tailor their services. Ìý WHITE I'm going to have to ask Keith and Sam to answer this very quickly but Keith is the spectrum idea helpful to you? Ìý DUFFY I suppose for the educational plan that we're trying to put into the kids on a one-to-one basis it's a fantastic way of being able to figure out what areas of the spectrum the child is in, in different areas of the spectrum, so it helps us to be able to teach in the right areas where some kids might be stronger than others in certain areas, it helps us to kind of specify what each individual child needs in each area. So for me yes I suppose it does help. Ìý WHITE And Sam what about you because you have experience of both - of various aspects of the spectrum - is it helpful? Ìý HALL In some ways yes it is helpful but in terms of the adult problem that we've got, the fact that he's got Asperger's Syndrome that people don't understand that he is going to need a different - a particularly different type of treatment, it's not simply going to be medication that he needs. And it's no good simply saying well he needs to go into a institution. He is able to function within the normal ranges of society provided he has the correct support to do that and that's really where it's lacking. Ìý WHITE Right, we will never have said enough about this subject, that's why we gave it a month. But for all the theories this month of programmes has really been about people and how they cope. So can we end by hearing again a few of those voices? Ìý MONTAGE One, two, a one two three four. Ìý MUSIC Ìý People are genuinely really shocked when we start playing because I think there's quite a kind of an ahh factor when people come to see us and they haven't heard us play. There was a lady came up to us after a gig and she was really moved by what we were doing. She said she realised what it means to me - I'm the mother of a person with autism and to see you up there having fun and making this wonderful music it just means so much to me as a parent to see you doing that. That's really cool. Ìý Ìý A lot of people were saying that people with Asperger's Syndrome couldn't get married. Ìý You know, they shouldn't be allowed to have children. Ìý That they couldn't maintain a relationship. And I don't believe that that is the case for everybody with Asperger's Syndrome. I think that some people with Asperger's Syndrome do find partners, it's often more difficult for them to find partners, and some of them can sustain a relationship in what is a mutually supportive marriage. Ìý Ìý 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 an ordinary developing child because you thought they wouldn't do it, when they say their first word we went out and bought champagne. The day Patrick started speaking we went and bought champagne. Ìý Ìý The game began as games often do very noisily and then the crowd settled down a bit and Danny jumped to his feet and said "More" because the crowd had gone quiet he was actually trying to stir them up. Ìý There's a particular Arsenal chant which I think both Nick and Danny have adapted to say "We love you Danny, we do", rather than "We love you Arsenal, we do." But when he heard the whole crowd singing what he thought was his song there was this just - smiling from ear to ear. 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