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You and YoursÌý- Transcript 91Èȱ¬ Radio 4 |
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TX: 22.10.04 - Nick Hornby on Autism Ìý PRESENTER: PETER WHITE |
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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. WHITE When the bestselling novelist Nick Hornby and his wife Virginia Bovell's son was born they were almost immediately worried that something was wrong. Initially they were concerned about his slow physical development, then at 15 months Danny showed symptoms which Nick describes as being like a hard drive crashing on a computer, all his systems seemed to fail. In the end they got the diagnosis they were by now half expecting - Danny was autistic. Ìý HORNBY Well he probably wasn't very happy around that year, you couldn't really get very much out of him, he used to sort of stay slumped over one or other of our shoulders when you took him out, wouldn't make eye contact with anyone. Ìý BOVELL And he would be lost, as it seemed to us, in very repetitive behaviours - he would just sit in a corner maybe leafing through the same book or doing the same puzzle over and over and over again and whatever we tried to do to engage with him or motivate him to get enjoyment from other things he wasn't having any of it really. Ìý WHITE How much did you know about autism - either of you? Ìý BOVELL I think after the early warning signs I remember a speech therapist saying - Virginia you seem very down and I thought - Yeah well wouldn't you be. When she said why are you worried - but she was absolutely wonderful actually because she got me to articulate that I thought he may have autism and as a result of that she gave me lots of things to read, lots of things to follow up, so that by the time he actually got the diagnosis it would have been completely astonishing if by then he hadn't got it. Ìý WHITE And what about you Nick, I mean you write quite a lot about boys and boy things, I just wondered how this boy who wasn't perhaps the boy you'd imagined, what effect that had on you? Ìý HORNBY Really one never wants to impose any kind of desires on - of one's own on a child ... Ìý WHITE It's hard not to though. Ìý HORNBY It's hard not to but in some ways you know it's quite liberating to think about parenthood and fatherhood in a completely different way. Ìý WHITE When did you start looking into what help there was, not just in terms of getting a diagnosis but what you could do? Ìý BOVELL There was a period of a few months when having read all about the signs and symptoms I personally went into a sort of paralysis and didn't look at interventions, it was quite bizarre. And it was only really because of the eternally persistent help of other parents or people who knew of other parents who would say - have you tried this, have you tried that? - and eventually ringing up other parents who had tried various things and recognising that there were a range of interventions that we should look at, in particular applied behaviour analysis or ABA. Went to see a child who was being home educated with an intensive behavioural approach and this little child was so happy and so motivated and was clearly learning so much that it just felt we had to give it a go really. Ìý WHITE I mean a lot of people do have this wish that their children should go to as "normal" a school as possible and then it sometimes goes wrong, well I just wonder whether that was a - that was a desire of yours, whether you can understand why that's what quite a lot of people want to do. Ìý HORNBY My own personal view is it's probably inappropriate for about 99% of children and I would ask any parent who's considering sending their autistic child to a mainstream school to question themselves as to why they want to do that, whether it's for the child's benefit or for their benefit. Ìý WHITE And why do you say that so strongly because 99% is a pretty - you might as well say a hundred Nick almost? Ìý HORNBY Well I think that there are some cases - at the very upper end of the spectrum - where a kid might be able to bed-in in a mainstream school but - and if you read all the kind of anecdotal evidence and lots of quotes from kids who've been to mainstream schools a lot of them were not happy. Ìý BOVELL I want to add a note of discord and also say this isn't why Nick and I divorced. I mean from the parents I've heard from and the parents I hear from on e-mail and talking to I just think one can never make too many hard and fast predictions and there are clearly large numbers of children who do benefit in mainstream school, maybe part time, maybe just in the primary years because there's clearly a particular challenge at the secondary transition age. I know, I've heard from many parents whose children have actually thrived in mainstream with lots of intensive additional support but they are worried sick about the transition to secondary and at that point they're looking for special schools or at that point they are saying why aren't there more mainstream schools with a special unit attached so that there is somewhere for our child to in a way seek sanctuary and or additional learning opportunities? Ìý WHITE We've obviously heard quite a lot in this series of programmes about the strain that having an autistic child imposes and Virginia you said jokingly I think that you hadn't had problems because you disagreed over integrated education but I mean it does - presumably it does impose a strain? Ìý HORNBY Well I think for both of us if we try to imagine life together with Danny then what you imagine is getting divorced, it's sort of an inevitability and one of the really important things I think that neither of us could overstate is having a break and Danny having two separate homes that he's incredibly happy in allows both of us to have a break. Ìý WHITE So almost - I'm seeing divorce as a plus. Ìý BOVELL I think one of the inevitable things is the shift work that will happen, if you've got a child who doesn't sleep very much, who however old and physically able bodied they are will need one to one surveillance, maybe because they don't have a sense of danger or because even though they're toilet trained they enjoy experimenting in other locations etc. etc., they need one to one and that never stops. Ìý WHITE Tree House was the school that you developed with other parents. Virginia just tell me a bit about that, why you went down that road. Ìý BOVELL 91Èȱ¬ based education is very tough for a lot of families so we felt very strongly that there needed to be a school based ABA provision. And that's why we decided to set up Tree House. Ìý WHITE So I wonder if we could talk just about, with you two, what effect you feel it had on Danny. Ìý HORNBY Oh Danny's just turned 11 and he's the happiest he's ever been in his life. He's really happy at school and in both his homes and I think that school has to take a large amount of the credit for that. He's very socialised, he's learnt to love significant adults other than his parents. His range of skills has increased, he's much more capable of doing things for himself now. Ìý BOVELL And learnt also to love, which is even more sort of remarkable and not textbook autism, especially one as severely affected as Danny, he's learnt to love other children. He's got one special friend in particular and they hug when they see each other and neither of them could speak to each other, they're both very severely disabled boys/soon to be young men, but there is an utter bond there and I think without the very tailored intensive structured and highly positive environment of school the potential for that sort of bond probably wouldn't have been realised in another setting. Ìý WHITE So when you hear about - I mean you talk about textbook autism and one of the things we've been striving to solve in a way in this month of programmes is what is autism and still no one quite seems to know and it almost seems that every experience every time you try to impose a generalisation on it, it kind of crashes to the ground - is that your experience? Ìý HORNBY Yeah I mean no two autistic children are the same. I've yet to meet one who doesn't like trampolining. Beyond that I wouldn't say they have an awful lot in common. There are patterns of behaviour but the range of interests and tastes is quite extraordinary. Ìý WHITE You talk about happy - happier Nick, I mean I just wonder, apart from terms like kind of more sociable and so forth, are there things, incidents, things he does where you could say that's happy, I wasn't seeing that before? Ìý HORNBY He laughs like a lunatic most of the time and that's my definition of happy. He sort of wakes up in the night laughing. Ìý BOVELL His body language when he's enjoying himself, he will smile and be focused and he'll smile in recognition to people. Ìý HORNBY He has a lot of energy compared to what he used to have, I mean a lot of enthusiasm for sort of going into places and bursting into rooms whereas before he'd be very timid and actually sometimes refuse to go into rooms. And he has a large number of cousins, for example, and when we went to visit them in the past he'd have to be fed in a different room, he wouldn't sit at the same table, but now he sits in the middle of quite a large table of people grinning quite happily. And he actually got very blissed out going to Arsenal. BOVELL Yes that's true yes. Ìý WHITE Is that the first time you've taken him? Ìý HORNBY Yeah and he loved the lights and he loved the noise. He went to one of the sort of lower key Carling Cup games last season but he saw a five-one win. Ìý WHITE Doesn't expect that every week - but you almost do get it every time. Ìý HORNBY We do get it every time now. But at one point the game began, as games often do, very noisily and then the crowd settle 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. But incredibly confident though. Ìý BOVELL And also 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. WHITE Virginia Bovell and Nick Hornby on Danny. Back to the You and Yours homepage The 91Èȱ¬ is not responsible for external websites |
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