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Daryll - Interview 6

Age at interview: 60
Brief Outline: Daryll's daughter Tiffany was diagnosed with Asperger syndrome when she was 14 and is waiting for an agreement by social services to fund her social care during university.
Background: Daryll, a special needs teacher, is divorced with a son aged 22 and daughter aged 19. Ethnic background/nationality: White British

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Daryll, a special needs teacher, is divorced from her husband and lives with her daughter’ Tiffany, aged 19.  Her son, Carl aged 22, is at university.  Carl has dyslexia and Daryll originally thought that Tiffany had similar reading difficulties.  She was on the special needs register at school from Year Two and by the end of primary school regularly refused to go to school.

Tiffany attended a private secondary school but performed very poorly.  One of the teachers in Year Nine suggested that she may have Asperger syndrome and she was then diagnosed a year later.  For Tiffany the diagnosis was a relief because it meant that there were other people like her.  From that point, her school work and attendance improved and she is now at college for one year before going to university to study archaeology.

Tiffany has problems with organising her life and has poor self care habits. She dislikes wearing shoes and has heightened senses which affect what she eats and drinks.  Darryll worries how Tiffany will manage life at university and is currently organising a care package so that she will have support outside teaching times.

Tiffany's problems in communicating with people lead to misunderstandings and this is made worse because people often don't know that she has Asperger’s syndrome. Daryll spends much time anticipating and trying to circumvent potential difficulties for Tiffany.

 

Daryll describes how Tiffany will over-react to events with friends.

Daryll describes how Tiffany will over-react to events with friends.

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And so she gets it any way fundamentally [laughs] because certain things she really ought to know; the fact that she has got to engage in eye contact and relationships with peers. Just go gently with them. Don’t sort of think that the first… you see there was only one girl about her same age as her on this course in [name of college]. And she came in one night and she was absolutely silent and she didn’t go upstairs. She didn’t do any work and I said, “Come on. What’s happening?” She said, “How do you know anything has happened?” So I said, “Well I have been your mother for 19 years,” I said, “I think I could sort of pick it out.” She said it is, “Nothing, it will go.” And she should know that I don’t give in.
 
So after 20 minutes she said, “Well.” I said, “It is [name of girl] or [name of girl], [name of girl] isn’t it?” So she said, “Yes,” she said, “How do you know?” I said… “Well,” she said, “Something and nothing.” I said, “It probably is something and nothing, Tiffany. It’s something that has upset you which she didn’t mean. And if she knew that you were upset, you know, she wouldn’t have done it.” So I said, then I get very defensive and sort of say, “How was she today?” She said, “Well…” It took about five days for it to get over but since they only see one another three times a week, it is not surprising. But she could have been having an off day and she’d have said something like you know, I mean if you listen to Tiffany, I am the most horrible mother, I am always shouting, I never have a laugh, I never… So I know how she reacts to other people.
 

Daryll describes how important it is for Tiffany to go to university because if not, she will...

Daryll describes how important it is for Tiffany to go to university because if not, she will...

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I mean if Tiffany doesn’t go to university she is going to be here for ever. She won’t be able to go out and do a normal job because she can’t. I mean she worked at [name of sports centre]. She qualified as a pool life guard, both my mine did. But it is so chaotic down there that she couldn’t cope and I believe that she hadn’t actually decided to leave that she would have eventually been fired because the others were incompetent. Many of them were her friends from college who did it for what little money [name of sports centre] paid and you know she would come home so stressed after a three hour shift, whereas Carl would do nine and he would come home tired but not stressed and in the end I said, “You are not doing it any more. You just can’t cope with it.”
 
I mean it is bad enough when she goes out for a night out. She is out of it really. It takes her, because it is all new things that she is taking in all the time and I said, “Do you see now why I get tired?” And because if you travel you are trying to assimilate information all the time and of course it takes her longer than the norm, whatever the norm is, and so she gets exhausted.
 

Daryll describes how Tiffany was going to warm up an old chicken from the fridge and does not “do...

Daryll describes how Tiffany was going to warm up an old chicken from the fridge and does not “do...

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You see I am trying to say to the university, she had got to have a balance between academic life which is going to take her up a lot, looking after herself, which is an absolute nightmare. I mean she came out to me a few months ago, with a chicken that, a cold chicken that had been in the fridge, mostly eaten, been in the fridge I knew for ten days, but I find it difficult now because I have got arthritic knees, getting down and clearing out the fridge. And I said, “What are you having for your meal?” So she said, “Well I have put that chicken in the oven.” I said, “What chicken?” She said, “The one we had, oh,” she said, “When so and so was here.” I said, “That is nearly two weeks ago.” She said, “Well I am just warming it up.” I said, “Well go and get some salmonella darling, just inject it.” She said, “Why is it bad?” I said, “Yes.” I said, “You can’t do that.” “What do I do with it then?” “Throw it away.”
 
But the number of meals that just get thrown away, because she will load the fridge, if she thinks about it, I mean I found three on the floor the other day, which had been there for ages. She will load the fridge but she won’t get the back front. She won’t do it that way. So I said, “Somebody at university is going to have to check her fridge at least twice a week and remove whatever is bad,” because she won’t look. She said to me, “I don’t do due by dates.” And I said, “Well you are asking to kill yourself.” I mean she sat there once with a ready meal at lunch time and she said, “Is this bad?” So I said, “Well I wouldn’t know, because I don’t eat whatever it was”, she was eating. So I said, “Do you think it is bad?” She said, “Yes.” So I said, “Well then throw it away.” I said, “You don’t risk getting food poisoning.” I said, “You have seen your brother have it, when we came back when we were at [holiday park] once.” And he was actually out of it for six days. I said to her, “You know what food poisoning is like.” I said you just don’t want it.
 

Daryll thinks it would be easier if her daughter had “AS sort of tattooed on her forehead” so...

Daryll thinks it would be easier if her daughter had “AS sort of tattooed on her forehead” so...

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But as I say if people could just understand. I mean it would be nice if she could have AS sort of tattooed on her forehead and everybody would think, ‘ah right’; if she behaves like that, she behaves like that. But I mean it is going to take her to supermarkets or something like that and I mean right from the start I mean one day she said to me quite loudly, she must have been small enough still to be put in a trolley. “What is that woman standing over there with a piece of paper in her mouth?” So everybody could hear. And I nearly died. She had never seen anybody smoking before. And well, she probably had but it had hadn’t suddenly popped into her mind and the humiliation people look at you as if to, you know, and it is just quite crazy but if she was severely autistic they would understand or Tourette’s because it is obvious because Tourette’s is quite closely linked, but because she looks totally normal and yet underneath there is all this lot churning inside all of us.
 

Daryll describes how Tiffany would need her own space at university and she would need someone to...

Daryll describes how Tiffany would need her own space at university and she would need someone to...

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This is what is at issue is she can get all the mentoring support for her educational side. But it is the social side. It is somebody going in there three hours a night checking her fridge, checking that she washes, checking that her laundry gets done. And at the weekend making sure she is okay doing her shopping. Because I will send her out shopping and sometimes if she has got seven things to do it might take her four trips.
 
And I mean I asked her every day last week, please go and pick up mini statements from the bank to see what has been paid in and when, because her money goes in all over the place at the moment. She never remembered any day. And she would go out and I would say, down the road to the shop, and it is not very far away and mini statement? “Oh God, I forgot it. I will go down again.” I said, “No, just leave it.” So I said, “It is too late. I needed you to do it, so I could pay something in if I needed to.” You know pay a bill or whatever. But it is all this kind of thing and they say, they are trying to stop her having support at night. I mean what the university want to do is, they want to be put some one in hall with her, who is going to be there, will check that she got back safely at night, just as I would do, because I can’t do it. I mean if she is not back what am I going to do from here. You know and if she does start nightmares again and she is starting dreaming a lot more.
 
She tells me some of her dreams now and they are not nightmares. But they are dreams and they are getting… I dream very, very vividly and I know it is something that is coming because she knows that changes are there. So I have got to have somebody there with her to try and stop me doing that. “So why does she need help at night?” So I said, “Just because if she has a night terror she is going to need help, because she will be in pieces.” But as I say they look at her and quite calm and collected and all the rest and they don’t see that.
 

Daryll describes how various services said they had no experience of Asperger syndrome and did...

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Daryll describes how various services said they had no experience of Asperger syndrome and did...

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We heard from every team in you can think of from Social Services. And they all came.. they said, “Yes. All right, she has got this condition, she needs this help. But it is nothing to do with us. It has got to go to somebody else” and the Mental Health Trust which has only really used to dealing with schizophrenia, bipolar and severe things, they have had no experience of it. And I even rang the Connexions service. Is this national I don’t know? I think it is. And they said, “Well we have never come across this problem before. We don’t know where to send you”. So I said, “Well if you resolve it, could you please come back”.
 

Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved...

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Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved...

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And then in year nine, I think, the Easter of year nine, I went in for a meeting with her SENCO and she turned, I was really up to it, I really couldn’t cope with it any more. I just had at Christmas, yes it would have been the Easter, at. At Christmas she had got down, because I had saved all their Lego and they had loads and loads of Lego, and she got it all down and it was all over her bedroom floor and it was still there and she would sit up there and build with it for hours.
 
And I mentioned this to the SENCO and I had already mentioned that she was very late with her speech. And she said, “Do you know what, I think [name of interviewee], I think she might have slight Asperger syndrome”. Now as I said, I am a special needs teacher. I qualified and did all that lot, but I had never heard of this condition. She said, “I have only met it once in a little boy, and he had it quite mildly, but..” she said. “I don’t know anything about it”.
 
So I immediately came back, ordered five books from Amazon and by the time she came back from France, I had read them all cover to cover and I said, “Tiffany, come upstairs”, because that was the only way to get her away from her brother, whose… they are either like that or they are like that. They are very, very close. And I said, “I think I know what is wrong with you.” So she came onto my bed, where she used to spend a lot of time. And I said, “Look I have bought all these books”. And she looked at me and I said, “Look I am going to read these bits and pieces which I have marked to her. I said does that sound familiar?” She said, “It is me.” So I said, “Yes, it is you”. And I had marked through the book C or T as according to which child it related to. She said, “Well I am not mad then?” I said, “No.” And her little face. She said, “I am not mad”. She kept saying all that evening, “I am not mad”.
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