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Christine - Interview 20

Brief Outline: Christine's son, Brian, was diagnosed with Asperger syndrome four years ago after being wrongly diagnosed with schizophrenia when he was 14. He lives at home now after years in a residential home and attends an autism day centre during the week.
Background: Christine has two adopted children, the oldest, Brian, is 30 years old. She lives with Brian and Alice, her daughter's child. Ethnic background/nationality: White British.

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Christine lives with her son Brian, aged 30, and her granddaughter, Alice, aged 7.  Christine and her husband adopted Brian when he was four months old and adopted Jenny two years later.  When he was a baby, Brian was allergic to milk, his speech was delayed and he didn’t walk until he was eighteen months old.  At nursery school Brian didn’t mix with the other children and Christine raised her concerns with the Health Visitor who said Brian was fine.  When he started school Brian became more withdrawn. 

The family moved area and Brian was bullied badly at his new school and became even quieter.  He was statemented and attended a special needs unit attached to the school for half the day.  Brian was diagnosed with dyslexia and eventually moved to a residential school for dyslexic children when he was 11 years old.  After two years, it was decided that the school was not appropriate for Brian and he moved to a local comprehensive where his unhappiness increased and he became suicidal.  Christine arranged for Brian to see a psychiatrist privately and he was diagnosed with schizophrenia and put on anti-psychotic medication.  

By this time, Brian was 15 and not well enough to attend school. His behaviour continued to deteriorate and when Christine’s husband died suddenly, Brian went to live in a residential home from where he was transferred to a nursing home two hours away because it was felt that he needed 24 hour nursing care.  Christine visited him weekly while being treated for breast cancer and eventually decided to move closer to the home.  Brian spent nine years in the home living with elderly people, many of whom had come out of long term institutional care. 

Five years ago Christine decided Brian should live at home with her and so removed him from the home.  At the same time, she became the full time carer of  Jenny’s child, Alice, who was two at the time.  Someone suggested to Christine that Brian had AS and so she did some research and contacted a psychologist who confirmed the diagnosis. Brian has been taking Clozaril since 1998 and has made good progress. Christine feels she can understand him better now she knows about autism.

Brian is now attending a day centre which he enjoys. He likes fishing and making models of cities.  At home, he spends most of his time in the kitchen making drinks which Christine thinks is an outcome of his time in the home.

 

Christine's son didn't cry and had delayed speech but she thinks it's easy to look back now and...

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Christine's son didn't cry and had delayed speech but she thinks it's easy to look back now and...

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Now I look back he has never cried. Never cried. He was always pleasant and the social worker who went to see Brian when he was in hospital before I got him, she said, when she went in and he was only a few weeks old, he always smiled. But as I said I have never seen any tears with Brian. He just does not cry.
 
When... he didn’t crawl. Occasionally he would roll, maybe four times, all this time he used to roll, but he never crawled and he was about eighteen months old before he walked. And he didn’t speak very well. He didn’t say full words. He used to say a bit of a word and then we applied to have a second child. I got [daughter] when Brian was only two. But he must have spent two or three months just saying the word two. Whatever you said to him, he would say “two”. Whether he meant he was two, or there was of them I don’t know. But I didn’t think there was anything wrong because I was so… I think looking back, you know you look back, it is very easy to look back isn’t it and say, “Well, looking back and looking at [name], she is completely different.” You know I would see that, but even then I sort of, I took him, we moved house and we moved into [city] and we sort of he got to the age of three, just over three and he still was not speaking clearly. Saying half a word.
 

Christine didn’t want to believe her son had autism because he had been misdiagnosed many years...

Christine didn’t want to believe her son had autism because he had been misdiagnosed many years...

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And we went to see [psychologist] in June. So Brian had come home in December and by June I went to see this psychologist because he seemed to fit what they were saying about autism. But in many ways I didn’t want to admit that it could be, at that stage, because all the years of it not being but when I went to see [psychologist]. I suppose I may be a bit Asperger's because he came here and I went there, you know, I didn’t realise he did …. And I was waiting at his house and eventually we did meet up because he came later and I was still waiting at his house. I am very … you know I thought maybe he has broke down. And he spent a long time listening and observing Brian and after a couple of hours he said, and he had got various reports, he had got medical things, some that I had sent him I think and from then he said, “Well there is no doubt in my mind that Brian certainly is autistic with the Asperger's.” I said, “He can’t be. He can’t be.” And he said, “Yes.”
 
And from then I could ask [psychologist] questions like why does he do this, so why does he do that? And every Christmas he wants a watch, a bloody watch for Christmas I said every year it is the same. And you have got boxes of them, you know you don’t want them... That is Christmas. And I said, “You know, when I buy him things does he not want them?” And he said, “Well has he asked for them?” “No. But he would like them.” He said, “How do you know he would?” I said, “Well I thought he would.” And he said, “Well no, he doesn’t, does he?” He said, “He won’t say to you.”
 
And it was from then after that, after [psychologist], I saw him a couple of times. I found it extremely upsetting, I have got to admit I did because I saw the mistakes that had been made. The mistakes that even I, you know, that I had found this, I had done that. Why hadn’t a mother recognized what was wrong with her son? And then from the minute I found out about autism it became easier in other ways. I stopped saying to Brian, “Brian will you stop doing that with your hands,” because he can’t stop. Sometimes I will say to him, “Brian give it a rest will you. You are doing my head in.” And then he will say, “Oh sorry, mum.” But that was something that I wasn’t aware of. I did not know that Brian doesn’t understand everything I say to him and apparently he has got these safety words, ‘yes mum’, ‘no mum’ which doesn’t mean he has understood me but he looks like he has. So when ever anyone ever would say anything to him, he would say ‘yes’, and he would yes to anything, you know, he just. Because there are some words, if you say his name and say it sharply he will listen otherwise you know he switches off.
 

Christine's experiences of holidays with Brian.

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Christine's experiences of holidays with Brian.

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Christine' So this year, but I only go maximum of four days because that is all I can cope with and I find it is easier to live out of suitcase. I don’t hang clothes up. I take two suitcases, one for clean, one for dirty because it is too much trying to wash.
 
And the first time we went on holiday I made the mistake of getting Brian a single bedroom and I woke up hearing someone in the corridor asking, Brian “Would you stop walking up and down?” Which I hadn’t thought about. So now I get family rooms. And we are all three together aren’t we?
 
Brian' Three single beds.
 
Christine' Three single beds yes. And he copes very well. He doesn’t mind. All he is interested in is food and it is odd because you know he decides he wants to eat and it doesn’t matter that is part of London where there is only a Pizza Hut and McDonalds and he doesn’t want that and you are saying, “We will have to go further.” “No, there will be something here.” And go back to the hotel and sort of order him food to be brought into the room that night. Room service that night I did, didn’t I because I just, it was too tiring, it had been a complete day. It had been too tiring.
 

Christine describes a trip on Eurostar with Brian.

Christine describes a trip on Eurostar with Brian.

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Christine' But last year we took him to London and we went on Eurostar to Paris. I would say it was successful. You just need a few months to get round. It was only a day trip and it was unfortunate that coming back there was four or five hours delay, four of them on the train because something had broken down in the tunnel and it had to be the train we were on [laughs] …
(child)' It was horrible.
Christine' It had to be the train that we were on. But it was held up but he wasn’t bad. He actually loved it. I found it, I found it embarrassing I have got to admit. I did explain to the lady going down. Brian, because the seats were reserved but he was actually at that side of me and not on the four, so he was sat with three French people and he loved it because he had not really heard anyone speak in French apart from bits on television, so his eyes never left them and he was over the table like this. So the lady… she had two children so I did say to her at one stage. “I am sorry about my son, but he finds you fascinating because you speak in a different language and he is autistic and Asperger's.” And she said, “That is fine, fine, don’t worry.” But coming back it was a lady, a young lady and two men. I don’t think they noticed him, but he did the same for all those hours, just staring at them, you know, and he doesn’t even look away. There is no embarrassment, you know, he doesn’t look away, and you have to keep saying to him, “Brian will you stop doing that, will you stop it,” you know.
 

Christine describes how Brian’s activities at home impact on her everyday life.

Christine describes how Brian’s activities at home impact on her everyday life.

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He does like [laugh] he does like unscrewing things especially taps. He used to be very good with taps. He is better since I got the new, it is like a shower tap even in the kitchen, it is a small one; that doesn’t seem to fascinate him but he likes the ones, the old fashioned ones that he can undo the screw. But he will stand by the sink all day, making drinks and that is why he goes to a day centre five days a week. That was the main reason why they funded all that because of him living in the kitchen and that is when you talk about life that is, it doesn’t sound much, but it is extremely difficult because let’s face it, there is about twelve tiles in the kitchen. It is extremely small and a large person… Brian is six foot five and if you get the two dogs in as well, you can’t get past him. When you want to make something you have literally got to say to him, “You have got to go out of here Brian, out of this kitchen.” And then he will hang by the door and he is watching you.
 
So then you can’t do anything really because it is too much trouble. You know where I love, I used to love doing dried flowers, baking, all kinds of different things, you are very limited. You have to do it while he is still in bed if he is not at the day centre. Weekends, Saturday is okay because he has a lie in on a Saturday. He has heard people talking that they have lie ins on a Saturday and years ago I would have said I would never leave him in bed past 9 o’clock ever. Now I will leave him in bed as long as he likes [laughs]. You know, usually the latest is about 2 o’clock when he gets up but he needs a lie in because people have lie ins on a weekend. Well that is fine you know, because I can have the kitchen and it is not that because he is making drinks all day he is spilling stuff up all day and you are cleaning there and then you come out and then you go back in later and it looks, and you thinks oh my God and it is not a bi, you know there is milk, there is coffee and it is mixed and he drinks weird, he drinks cold coffee sometimes at the bottom with a spoon in the cup and you know, you walk in and you see this and you think, and the bin has all got stuff. It is horrendous. 
 
And of course the bathroom is straight across and he loves bathrooms as well because obviously they have got taps and I think he likes the mirror too. So you know if you get him out the kitchen he is in… and you can see the bathroom here is straight across. So you can’t get rid of him [giggle]. And I did have a thing when I first got him home that I had the sofa, I had the other stuff in here and I made that a bedroom for me but it is impossible because at night Brian is in the corridor there and it shadows with it being such an old house and he is moving his fingers and you are trying to watch television or you are trying to read and all you see are these fingers going…. It drives you made. It really does. So I thought I can live without that.
 
I have actually got him now that at night he will come in here. Not every night. On a Saturday night he will come in the sitting room to me only on a Saturday night, just for that an hour and a half, that seems to be regular now. But on an ordinary week night if I put him UK Gold on he will come in here and watch Fools and Horses and Open All Hours. We have been watching that about two years now. I just hope UK Gold don’t take them off, you know, or if they do they put Norman Wisdom or someone on, because he quite likes Norman Wisdom. So, but it is getting him out of the kitchen.
 

Brian chooses what to wear by whether the sun is in or out, not according to the temperature; he...

Brian chooses what to wear by whether the sun is in or out, not according to the temperature; he...

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This morning the sun wasn’t out so he will come down with a winter jacket that has got a fur lining, you know. I think I have thrown it away. He can’t do it. He had a bob hat when he was in the home. I think I have thrown that otherwise he would come down with that on as well. And then when it is winter and the sun comes out he will want to go out in a T-shirt, you know and it is okay but sometimes it's not. And you say, “Brian…” And then you realise he is never going to alter so now you just say to him, “No take it back Brian, don’t bother to argue, just take it back Brian. It is cold outside. Take my word for it.” I think we had an argument Brian and I, in so much as he doesn’t argue he just kept repeating the same thing, when he… it is about five weeks ago and he decided it was hot when it wasn’t and it was when he was off for a day and I couldn’t get through to him that it wasn’t hot, that he needed a coat on. He wanted to go out in a T-shirt. “No you can’t. It isn’t hot. It is cold.” And he was still muttering away that it was hot outside mum, when we were in the car and I am saying, “There is an old lady. See her with that hat on. See her with that scarf on. Well you should stop the car and say to her, take it off it is hot, you should have your sun glasses on.”
 
And then he looked at me, and he said, “Yes that is right, mum, we should do that.” And I thought, “Oh no.” It is that. And if I can laugh I am okay, you know, you can get round it but sometimes things are not funny. But he tries, you know, he can’t understand... trying to get him to use the microwave. He will use it but it is absolutely, he uses it every day, but he will put… you know if I fall asleep and I tend to, I tend to fall asleep 7 to 8 and then I am awake for hours, he will cook a packet of bacon and he will put it on for 30 seconds and he will have ate it raw. Well it will be and I know because I wake up and I have got the smell and you can’t get through to him what time it's on. I don’t think he knows hot and cold. It doesn’t seem to bother him with food, whether it is hot or cold. I don’t think he even notices taste half the time. I don’t think he knows if anything is good. He puts ice cream in the microwave and melts it, you know, its got to be, I don’t know why ice cream had got to be melted. I have not worked that one out yet. I was just wondering then, but I don’t know.
 

Brian is doing ‘incredibly’ at an autism initiative day centre where he goes five days a week.

Brian is doing ‘incredibly’ at an autism initiative day centre where he goes five days a week.

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I have got him that he goes five days a week to Autism Initiative which is a day centre for autistic people and he is doing very well. It is incredible. He has started, about eighteen months ago maybe, he has been going there three years, he started making models, making villages. He is doing the Eiffel Tower at the moment, but they are like big, like miniature villages and they look up, whatever he is going to do they look it up on the computer and then they do a printout and then they decide how they are going to do it. And when someone comes to look round Brian takes the people round, he tells me. And they found out that he likes fishing and he goes fishing. The first time or the second time he lost his rod. They got it in though. It is not his it is theirs but he actually… the fish took the rod as well.
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