|
|
|
|
|
|
 |
You and YoursÌý- Transcript 91Èȱ¬ Radio 4 |
|
|
|
Print This Page |
|
|
|
|
|
TX: 13.10.04 - Autism interventions Ìý PRESENTER:ÌýSHEILA McCLENNON |
|
|
|
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. MCCLENNON Today in the latest in this month's special series on autism we're looking at the issue of interventions. Once a diagnosis has been made how do families proceed and how can they evaluate the many different therapies available? Ìý Well we've randomly chosen seven interventions which we're going to be looking at this week. Professor Pat Howlin from St. George's Medical School in London, who's on the board of the recently formed Autism Intervention Research Trust, joined me to assess three therapies today but she began by telling me about some of the more bizarre ideas she's come across. Ìý HOWLIN Well there are huge numbers of treatments out there from having your child swung around in nets, cranial osteopathy, swimming with dolphins, new things coming on the net virtually everyday making it extraordinarily difficult for parents to judge which therapies to go for or which ones work, if indeed any of them do work. Ìý MCCLENNON I mean how do they make that decision? If someone's said it's worked for their child and if your child's just been diagnosed you're going to perhaps clutch at that as a lifeline for your child. Ìý HOWLIN Absolutely and parents are very vulnerable to claims of this kind, particularly when the proponents are saying this will cure your child with autism. It just places parents in an impossible position I think. Ìý MCCLENNON Are parents still trying to find a cure or are they moving more towards working with the condition? Ìý HOWLIN I think most parents want to try and help their child's condition generally but they are not helped by people who are still making claims for cures or miracles and that is very seductive and can lead parents to paying vast amounts of money for totally unproven treatments. Ìý MCCLENNON Okay, well stay with us because we're going to look at three interventions today and they're in no particular order. Starting with audio integration training or AIT which was developed by a doctor in France 50 years ago to try to cure his tinnitus. It alters the sound of music by playing it through a machine called an audiokinetron. It's been a big success for a young autistic girl, Helen Wood, who has an extremely high IQ and a massive vocabulary but she can't speak so she uses a machine to type out her thoughts which are then voiced through a communicator. Our reporter Carolyn Atkinson met Helen's AIT tutor, Pauline Allen, who offers 10 day courses of AIT for 30 minutes in the morning and 30 minutes in the afternoon. Ìý ALLEN The way we hear is the way we speak, we can only reproduce what we hear and if we're hearing it correctly we can reproduce it correctly, if we're not hearing it correctly it's very hard to do so. Ìý ATKINSON So you're saying that an autistic child isn't hearing what other people hear, it's like being in a massively loud airport terminal or something where you've got so much noise going in they just don't know where to start. Ìý ALLEN That's quite correct. If there is an over-sensitivity to sound then the person may tune out and shut down because the hearing could actually be painful. And it's very difficult to pick up speech and language amongst all the other sounds because speech is a complex mixture of sound. Ìý HELEN WOOD 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 MRS WOOD 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 HELEN WOOD 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 MRS WOOD She's got a very high academic level. I tried to teach her to read at three years old and found that she already could. She's been identified as gifted and she won an award for achievement last year. She types beautiful poetry using her light writer, she does very high level maths for her age as well but it's social contact - she really wants to chat with friends - that's a big part that's missing out of her life. Ìý ACTUALITY ALLEN So Helen we're going to put the headphones on, okay? We've got a nice piece of music for you today, it's Bob Marley and off they go. Ìý MUSIC Ìý This is how the music sounds normally, as you'd hear it on your CD player at home. And this is what Helen's hearing through the headphones. This is the way the music sounds played through the audiokinetron. Every piece of music has a pattern to it and if we hear music that has an off note that's discordant we know automatically that that's a wrong note, we have anticipated that music even if we've never heard the music before. And so by interfering with the pattern of the music that we're playing we're actually getting the person to pay more attention, by their auditory system paying more attention the results are that their systems change and by altering the auditory pattern and making it straighter speech and language is more easily understandable. Ìý HELEN WOOD I listen to a lot of music using headphones parts of the songs were altered by a machine so that the music sounded strange and I didn't know what was coming next. Ìý MUSIC Ìý HELEN WOOD It meant I couldn't work out how to stop sounds that I didn't like hearing. Ìý ALLEN Autistic children have described raindrops sounding like machine guns, the sound of waves sounding like tidal waves. Ìý ATKINSON And Delia, as Helen's mum, what do you think it's doing? Ìý MRS. WOOD She's effectively tuning out a lot of what would be useful to her because it's slightly uncomfortable and what the sound does is because it's random - the selection is random - it means that she can't protect herself and she can't anticipate when a certain sound that she doesn't like or a range is coming up that she doesn't like, so she has to listen to it and get on with it really. Ìý ATKINSON And in real life then how does that translate on a daily basis? Ìý MRS. WOOD Yesterday we went on a train and she'd never been able to cope with train travel before. The other thing that she's able to do now and that she actually started - I think it was about the fourth or fifth day of AIT was she was able to go and sit in a café and not run around screaming, tipping over chairs, which would have been what happened before. Ìý HELEN WOOD Most importantly I have been able to speak a little more because I can hear the speech notes more clearly than I could before. I am also able to cope with sound in ways that used to be impossible. I am so happy I am learning a new way of speaking and I am amazed at how autism is [indistinct word] more each day. Please always help people like me. Ìý MUSIC Ìý MCCLENNON Well that was eight-year-old Helen Wood explaining, via her communicator, how audio integration training has helped her. Listening was Professor Pat Howlin. Pat, we heard what it's done for Helen and her tutor does say that this isn't a cure, is there any evidence though that retraining the senses by listening to filtered music like this actually works? Ìý HOWLIN Well I think it's certainly the case that many individuals with autism do have marked over-sensitivity to sound, so that making sense of all the sounds they hear around them every minute of the day can be extraordinarily difficult. In terms of the general evidence for AIT it's quite difficult to determine exactly what it may be doing to help some children. Certainly the reports of single case or small group studies of children going through this process have reported positive effects. Unfortunately however when one looks at more rigorously control group studies where one group of children have had the AIT and the other group have perhaps just listened to unfiltered music or music in the background the overall group differences haven't been significant at all. Ìý MCCLENNON So a yes or no in terms of useful interventions in your opinion? Ìý HOWLIN Clearly for this particular child it's been helpful, although she's obviously also been helped enormously by having this communicating device which has helped overcome her spoken language problems. But in terms of the evidence that it's generally effective for children with autism we really don't have that evidence and in fact in some studies children have actually done better being in positions where they've listened to just music in the background rather than the filtered sounds of AIT. Ìý MCCLENNON Okay Professor Howlin we're going to move on now to a different intervention, it's the vitamins and minerals and hormones taken by some people with autism. Jonathan Tommey told Carolyn Atkinson about his autistic son Billy, who was the first person in the UK to be injected with a controversial pig hormone called secretin. Ìý TOMMEY Very soon after he was diagnosed a friend of ours was reading the Guardian and out came a piece from America saying that this woman had had wonderful results using a pig hormone called secretin. Our son, at that time, had had chronic diarrhoea for about 18 months and we felt that we had to do something very quickly and had to act drastically really. So we managed to obtain secretin from America and we were fortunate enough to have a doctor in London that actually infused it into our son and we saw absolutely fantastic results 24 hours thereafter. He had his first normal bowel movement in those 18 months and following that his behaviour, his eye contact, his speech and language, his social interaction skills all improved drastically. And what we found was obviously it had a major effect on his total being really and that was for us absolutely fantastic. So for Billy secretin really did work. Ìý ATKINSON But it is a very controversial thing to have done and a lot of people would say you absolutely shouldn't go there, not least because it's from an animal that really could pass on lots of other things to your son. Ìý TOMMEY This is one of the reasons why we did stop the infusions - he had six in total over a period of six months - and because it was derived or obtained from a pig, which DNA is very similar to a human's, we felt that if we'd continued to do it, it may have set up an autoimmune reaction against his own production of secretin, if indeed he had any. Ìý ATKINSON Now once you'd finished the course you then sort of took a turn towards vitamins and minerals for your son, what regime is he on now, what does he take everyday? Ìý TOMMEY He takes three liquids and about 12 capsules of different nutrients. We're doing a Udo's Choice Oil, which is an anti-inflammatory but also gives Omega 3s for cell structure or stability. Probiotics and prebiotics to restore his gut flora, he's got a lot of abnormal gut flora in his bowel and candida which we treat with Saccharomyces Boulardii, a separate supplement. He has maximol solutions, which is a multivitamin and mineral supplement. B Complex, digestive enzymes, which break down the foodstuffs that he's eating, as secretin did. Silica because he's got high levels of aluminium in his hair. Vitamin C to improve his immune strength. Liv-D, which is to enhance his liver function, a lot of children like Billy have leaky gut and obviously that allows a lot of toxins through into the blood which unfortunately the poor liver has to deal with. So we like to support his liver function by giving him this. And an amino acid supplement to restore the amino acids that he's deficient in. Ìý ATKINSON What differences have you seen since you started this regime of vitamins and minerals and liquids in the way he behaves, in the way he is? Ìý TOMMEY Well we had a lot of major problems with Billy, not only dealing with his autism but waking up very early in the morning - 2 o'clock in the morning, 3 o'clock in the morning. He wouldn't eat breakfast. He wouldn't change himself, he would be defecating all around the house. He may be throwing things, he would have no language. And now, following this regime, he wakes at 6.30 in the morning, he comes down for breakfast, he eats his breakfast, he goes upstairs, gets out of his pyjamas, changes into his school uniform, jumps on the bus - happy as Larry - goes to school, comes back, will probably play a Playstation 2 game for half an hour to an hour, come down for his dinner which he would eat every crumb, raid the freezer and obviously try and get as much casein free ice cream or any ice cream he can find to eat and would be in bed by 9.30 to 10 o'clock. Whereas before we did all of this treatment protocol he wouldn't go to bed probably till 12 o'clock. So we were struggling dealing with that and having two hours sleep a night. Ìý ATKINSON There's no question for you is it, it's something that you feel has worked. Ìý TOMMEY Absolutely, absolutely. I think dealing with an autistic child is very difficult. If you can do anything to improve their behaviour, to reduce their autism symptoms you've got to give it a go. Ìý MCCLENNON That was Jonathan Tommey who's spent around £20,000 so far on supplements for his son and he says it's been worth every penny, as he stated Billy is now a changed child. Professor Pat Howlin, from the Autism Intervention Research Trust, is still here listening to that. What is the general evidence then Pat for secretin? Ìý HOWLIN Although one does get occasional single case reports from individual parents of their children doing very well after infusions of secretin again the group studies that have been done, which have been methodologically well controlled, show no difference in terms of autism symptoms and subsequent outcome between children given secretin infusions and children given placebo treatments. When neither the parents nor the people giving the treatment knew at the time which one was being given. And when that's done there is really no difference between the children given the placebo and those given the secretin. Ìý MCCLENNON Is there any evidence for other vitamin and mineral supplements? Ìý HOWLIN Again there's lots of reports of certain children being helped by certain substances. The problem is many children on such - who are involved in therapies of this kind are given so many different types of substances - I think that father mentioned about 18 different kinds altogether - it's absolutely impossible to know which, if any of those, has had a particular effect on the child's behaviour. Ìý MCCLENNON We're going to have to move on now to the final one we're looking at today which is ABA, it stands for applied behavioural analysis, it's an educational intervention, costs around £25,000 per person each year. Sarah Siegle [phon.] has three boys with autism and is about to start a legal battle with her council to fund the treatment for her youngest boy, having already successfully gone to tribunal to get the intervention paid for, for her two eldest children. Ìý SIEGLE This is Thomas, who's Benjamin's twin brother, non-identical, and looks very different and in fact has quite different problems from Benjamin in many ways. He's working this afternoon with Amy. And this is Benjamin, Thomas's twin brother, and he's working with Tracey this afternoon. Ìý ACTUALITY Who this? Ìý Rebecca. Ìý Yes it's Rebecca well done. What number? Ìý Number 9. Ìý Excellent, it's number 9. Who's that? Ìý SIEGLE ADA means applied behavioural analysis and I see it as an extension of good parenting in some ways. It's things like controlling temper tantrums and it's a lot of daily living skills, so they as well as academics they also involve toileting needs if necessary, eating. Ìý ATKINSON What sort of regime, if you like, do you have to operate to make it work? Ìý SIEGLE They say you need a minimum of about 30 hours, 35-40 is ideal so we do 35. The boys all do three and a half hours morning and afternoon, which involves a total mixture of looking at behaviours they may have, for instance at the moment Benjamin keeps spitting, so trying to stop that sort of behaviour that is antisocial when you go to school. He also goes into school for two hours a day and Tracey, his tutor who's working with him for that session, will take him into school, accompany him in there, stay with him in the classroom and then bring him home again. Ìý TRACEY I have a set of cards in front of me which consist of verbs, numbers, sounds, pictures and Benjamin's classmates. [name] wants to talk into the microphone now. And what I'm going to do is I'm going to run through the pack of cards and prompt Benjamin where he needs prompting and reinforce him as he gets them correct. Ìý ACTUALITY What number? Ìý Number 1. Ìý Good boy, it's number 1. What's mummy doing? Ìý Writing. Ìý Well done, mummy's writing. Ìý Number 7. Ìý Good it's number 7, well done. Ìý ATKINSON How do you think ABA works? Ìý SIEGLE I think it works by its intensity - the fact that they are everyday being led the same way. What they say is that a normal child in all their waking hours of learning and they're absorbing the world around them, asking questions, you're chatting to them, they're picking things up as they go along, with our children they'll only learn while you're actually concentrating on teaching them therefore they get seven hours a day where another child would get 12 hours of learning experience, so for them it's not excessive, it sounds like it is and it's also not sitting at a table and being made to work, it's play skills and if it's teaching them how to play nicely you're sat on the floor playing with them which a parent would be doing with a child anyway. Ìý TRACEY Everything that Benjamin knows has been taught to him by us, by doing what we're doing now that's going through a pack of cards and if he doesn't know them then we fully prompt him to get the correct answer and once you work through fully prompting for a while he'll begin to identify the picture and get it correct. Ìý ACTUALITY Thomas is working with Amy this afternoon so Thomas might want - do you want to sing - do you want to sing a song? Ìý Do you sing a song? Look you sing a song Thomas. Say hello - sing a song. Ìý Good, are you ready? Say thank you. Ìý Say thank you. Ìý SIEGLE To integrate them into normal society we don't just work in the house, they also may go to the playground, play with other children, get on the bus, learn to queue on the bus, give their money to the bus conductor - all those things that you need somebody on a one-to-one basis safely to manage that. But they need to learn all that, they don't need to just be able to behave in a room. Ìý ACTUALITY Can you do this? Can you do this Thomas? Good. Give me five. Touch your head. Good. Ìý ATKINSON From your observations of your children doing ABA what do you think the improvements have been so far? Ìý SIEGLE When we started at three Thomas had half a dozen words maybe, he had a few words but he didn't really understand spoken language. Benjamin couldn't talk at all and didn't understand a word that was said to him. Within two months of doing the programme Benjamin had started to say his first words and now he's actually caught up and his language is probably equal to his brother's. They can ask for things they want and they can tell you what they don't want and what they want to do - make choices. And all those sort of things makes such a difference to them as far as not having to have a tantrum because if you can't explain yourself what else can you do but screech? It's a whole behavioural system for the rest of their lives to get them to behave properly and behave like other children would. I think it works for every child, no matter how severely autistic or not. The programme itself isn't a cure but what it will do is maximise the potential a hundred per cent of what that child could possibly achieve. Ìý ACTUALITY Three, two, one. Ìý Blast off. Ìý Off goes the rocket. Ìý Goodbye. Ìý Goodbye rocket. Ìý Come back soon he shouts. Ìý Come back soon. Ìý MCCLENNON Sarah Siegle, her boys and their tutors enjoying their ABA. So applied behavioural analysis, Professor Part Howlin is still here, that's where we break down our world and expectations into tiny blocks and bring the autistic child into it, what's the evidence that that works? Ìý HOWLIN I think there's absolutely no doubt that behavioural interventions of that kind have been a help to children with autism and their families since they first began to be used in the late 1960s in fact. They offer consistency to the child and parents are helped to adapt their behaviours to the child's needs and also given advice on how to build up skills. And I think the comment that behavioural approaches work for every child is beyond dispute. What's more a topic of controversy is whether one really needs these 35 or 40 hours per week programmes, which certainly for some parents seem to work very well but obviously there are many families who - for whom that demand in terms of time would be too much and of course it doesn't come cheaply either. Ìý MCCLENNON And that's just the formal therapy isn't it, I mean this is a regime that has to be carried out less formally all the time at home. Ìý HOWLIN Yes, I think the basic strategies can be adapted to pretty well every day time activity, if parents are given help and guidance with that. But the much more intensive one-to-one therapy for, as the parent said, 35-40 hours a week is just something which many parents cannot afford or can't cope with. Ìý MCCLENNON Now you're looking at this yourself - some research into ABA. Ìý HOWLIN We have a study that's just coming to completion at the moment where we followed up around 20 families who've been through this very intensive home based ABA intervention and comparing the progress of their children with another group who were very closely matched when we first started of children who've actually gone into very good autism specific nursery schools where the whole regime is geared towards the needs of the children and also geared of course towards helping the parents. We haven't got the results of that study yet though unfortunately. Ìý MCCLENNON Professor Pat Howlin thank you very much. Ìý And tomorrow we examine the controversial American programme - Son Rise - that's S o n Rise, followed on Friday by gluten and casein free diets, a communication system known as PECS and a combination programme called Growing Minds. Details of course will be on the You and Yours website. , that are available for autism. Back to the You and Yours homepage The 91Èȱ¬ is not responsible for external websites |
| About the 91Èȱ¬ | Help | Terms of Use | Privacy & Cookies Policy |