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	TX: 6.10.04听听AUTISM SERIES PRESENTER: JOHN WAITE听

	听 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 大象传媒 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. 听 TX: 06.10.04听听 AUTISM SERIES 听 PRESENTER: JOHN WAITE 听听 WAITE Now for the latest in our series on autism. Today we look at the impact autism can have on the parents and family of someone with the condition. Rosemary and Bob Kemps' son Matthew was diagnosed almost 20 years ago at the age of five, now lives in a care home in Bognor Regis. Liz Pearson has been to meet the Kemps, along with their 16-year-old son Aaron at their home in Seaford on the south coast as they prepare to go to visit Matthew and heard how their lives, their work and their relationships with each other, as well as with Matthew, have all been affected by his condition. 听 PIANO MUSIC 听 ROSEMARY KEMP Before the Matthew thing hit me I was playing professionally, so basically my life went on hold. The actual playing career just died a death, which it wouldn't have done with a normal baby phase but a 20 year baby phase is another story. You have like a bereavement from that, you have lots of bereavements - you have the bereavement of the lost career but more importantly you've got the bereavement of the lost child. We knew that there was something strange about Matthew from the word go. Never slept and I was a zombie from virtually day one when he was born. He would sleep from 6 o'clock in the evening until 1 o'clock in the morning and then the day began. So it made for all sorts of tensions and friction there. I remember one night being accused by my husband of waking Matthew up, which sounds like nothing but at the time I can remember reacting really badly and I remember throwing something at him and it smashed. But yeah lots of sort of screaming sessions, yes very, very bad for marriages, it's very, very bad for relationships to have a situation where you never get it right. 听 BOB KEMP Things are fraught, you're dealing with a difficult problem then you know your tempers tend to be shorter, your tolerance levels are shorter than they would be if it was a more relaxed environment. 听 ACTUALITY Bob. 听 Yeah. 听 Can you make a cup of tea for us before we go out to visit Matthew? Okay. 听 ROSEMARY KEMP Playgroup was quite an experience because it was when the troubles were really beginning to build up - Matthew changed when he was coming up to the age of three. He'd had a fairly normal development, apart from no sleep and being obsessive and being weird, he was obsessed with running water down the sink and watching the vortex of the water going round. And I remember one day in the nursery watching him show the other children the vortex in the sink and them all sort of talking to each other and saying - he's loopy, he's mad, he's weird. So it wasn't until around about this age, round about nursery age, that I started to really see the difference between Matthew's development and normal children's development. The other children were becoming independent and I watched my child becoming almost more dependent, not less dependent. And all the children picked on him and I had to watch that, that was hard. 听 BOB KEMP And some of his learning seemed to regress and his speech, language, seemed to regress rather than progress like a normal child. So that was a very difficult period. Obviously we were losing the son we thought we had. And eventually it became clear that he was disabled. It's kind of like a grieving process, it's almost like losing a child except you haven't - you've got a different child. 听 ROSEMARY KEMP And the human, the person - the mother - 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. So it's very difficult, it's - there's a rejection that is also difficult. 听 ACTUALITY Right. 听 I've packed some things to take to Matthew. I've packed mousse - Milky Bar mousse - and Milky Bar chocolate - his favourites. Come on then let's get that cup of tea and then we'd better go off to Bognor. 听 PEARSON What did doctors say to you about the idea of having another child? 听 ROSEMARY KEMP We were seeing a psychotherapist who did tell us that it would destroy Matthew if I had another child. I felt very resentful about that and I did eventually have another child. It made us feel like a normal family, it gave us - it gave us a normal existence, it gave an opening into meeting people, it wasn't totally normal because you still had Matthew with you. 听 AARON KEMP My name's Aaron and I'm Matthew's younger brother, I'm about seven and a half years younger than he is. He would have funny moods where he would start screaming and as time went on he developed a tendency to self-harm - he would start biting his arms. And if anyone got in his way they would usually get bitten. I was always told, whenever this happened, to just get out of the way. I remember there were many occasions I would just barricade myself in the study and I would lock myself in there and it was really quite harrowing, I would just be waiting for it to end because I could hear him screaming, I could hear my mum yelling because she would have to administer medication and try to calm him down. 听 ROSEMARY KEMP We forced ourselves to try to not become an autistic family because it's quite a well known fact that when you've got a child who can't cope with being out that you tend to not go out and most families in this situation gradually stay in more and more. So going out was something that we did and we went to hotels, we went to restaurants and we went on holiday and we had to sort of engineer those occasions such that there was an emergency route - you had to know where you were - how you were going to get away if things went wrong. And Matthew responded really well to that. There are lots of things that were dreadful but there were lots and lots of good memories too. No I think it's really important that people realise that there are good things to remember because they're still your child. 听 PEARSON So how old was Matthew when you made your decision as a family that a care placement would be better for him? 听 ROSEMARY KEMP Matthew was about 18 when he went into the care home, the first care home, and it was because I had to go into hospital because of cancer. 听 PEARSON Did you notice a change in the dynamics between you and your husband and Aaron because Matthew was no longer there? 听 ROSEMARY KEMP I think it's allowed us to relax enough to actually recognise that each other have needs, I don't think you think about anybody else's needs other than your autistic child's needs when you've got that responsibility. 听 ACTUALITY Okay, I'm going to go to the car, okay. [Indistinct words] set it off. 听 Quite close now. There's Bognor pier. It's a lovely place for him to live because it's right on the sea front almost, he's close to the Downs, he's close to the beach - he goes for lovely walks along the sea - sea front here. Mum and dad. Hello sweetheart. Hello. Come here because I've got all this for you. Come here. We'll sing how high does the fly fly. Come here. How ... 听 High does the fly ... 听 Fly ... 听 Fly, flies... 听 Ever so... 听 High. 听 Come on that was nice. We'll sing again in a minute. 听 ROSEMARY KEMP I think he just wants his crisps to be honest. 听 ACTUALITY We know where the ... 听 ROSEMARY KEMP Matthew was really in good form. He sang to us and he was fine, wasn't he Bob? 听 BOB KEMP Yeah he was in good shape. I saw a smile. 听 ROSEMARY KEMP That was good. That was a successful session. Successful visit. 听 WAITE The Kemps were talking to Liz Pearson. And autism's been in the headlines again today with the news that a 55 year old autistic man has won damages in the European Court of Human Rights which found that he'd been unlawfully deprived of his liberty when he was kept in a psychiatric hospital for several months in 1997. Well we'll be examining the implications of that ruling later this month when we'll be focussing on the lack of services for adults with autism. 听 Back to the Transcripts homepage Back to the You and Yours homepage The 大象传媒 is not responsible for external websites

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