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Laurie - Interview 53

Brief Outline: Laurie, 46, was diagnosed with Asperger syndrome when she was 44. She is starting a university course in journalism and works part time as a market researcher.
Background: Laurie, a student, lives with her three children. Ethnic background/nationality: White British.

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Laurie, 46, was diagnosed with Asperger syndrome when she was 44. She had been researching autism on behalf of her youngest child, who is now 13, when she realised that the experiences she was reading about were very similar to her own. For example, she was a loner as a child, had difficulties with relationships and always found it difficult to make life plans. She decided she wanted the diagnosis because it was important to her to know that she had AS rather than there being anything wrong with her. She followed the recommendations on the National Autistic Society website and was diagnosed quite quickly.
 
After having two children, Laurie split up from their father and she had a third child with a new partner. The baby had a head injury and Laurie and her partner became involved with social services. The baby was placed in foster care for some time but was eventually returned to Laurie and has lived with her ever since. This experience has had a big impact on Laurie despite the passage of time and she feels that she was manipulated by various professionals and was never listened to.
 
Laurie is about to start a university degree in journalism, with support, which includes a laptop, the offer of a note taker and a recorder to tape lectures. She enjoys bike riding, going to the theatre and is involved in a 17th century re-enactment group.    She describes how difficult she finds it to organise her life and that she is “rubbish at relationships”. She thinks her life has been difficult because she lacks “savviness”. She does not have any friends to discuss issues with and says that it is a mystery to her how to go about forming friendships. She feels like a spectator in life and describes how “life just hurts, just hurts being alive.”

 

Laurie followed 'step by step' the recommendations on the National Autistic Society website.

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First of all can you tell me the process of getting of getting the diagnosis.
 
I went. Oh I followed it step by step off the recommendations on the National Autistic Society website. It is brilliant. A marvellous, marvellous website it is really good, and user friendly and everything.
 
 And I printed off some information and I got the NAS to send me a big brown envelope full of leaflets and information. There was in there a laminated thing, information sheet to actually take along to the doctor, because it does say, you know, not all, GP’s just don’t necessarily know an awful lot about it. So I went down to the doctor and said, “I think I have got Asperger syndrome and I would like a proper diagnosis please.” And she said, “What makes you think you have got Asperger syndrome?” So I “Er, um, er, because I just do sort of.” I didn’t want to go, “Well just because …” And I told her about the research that I’d done on behalf of my son which made me feel all right because I wasn’t actually looking for something to be wrong with me. I was, I was, you know, I didn’t wake up one day and think, shit I am autistic.   It hadn’t occurred to me that it might be me. I just, anyway, anyway, I went to the doctor and that is what happened. I had to wait a while.
I got an appointment through. I went along to see the lady, who wore striped trousers. And I can’t remember her name. [name], Her name is [name] and she had striped trousers on. And little stripes. You now different colours things, not pin stripes. And, and I had to go back a couple of weeks later. Was it two weeks later? Or one week later? Because you came with me didn’t you? I think it was one week or two weeks later. But she said on the day that I was clearly on the autistic spectrum. So … and I had to go back and she told me why and she gave me a great big wedgy of paper. All these lots of sheets of all the reasons why she thought I had it and everything and she said I was 95% because, which is stupid because it says, because they can’t work in 100% so I had to only be 95%. So … And that was it.
 
They asked me if I wanted counselling. I thought well not particularly. She didn’t offer that sort of service. No, I was all right about it. So I went off with my certificate and that was it.
 

Laurie said that if she hadn't had the diagnosis of Asperger syndrome she would have continued to...

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And what was it that made you think that you wanted to get the diagnosis?
 
I didn’t want not to know. I mean if you have got something that you think is there, I think most people would rather know, than just bury their head in the sand for instance. You know, I thought, well I would rather know for sure, because… in actual fact, I got really concerned about it. I got really worried and paranoid and I really needed to know because I was getting really anxious about it. I was thinking, well, if I have… because it looked so familiar, looking at all the, you know the diagnostic criteria and reading people’s stories and looking through the leaflets that I got from the National Autistic Society. I just, I thought if I haven’t got Asperger syndrome then what is wrong with me. I thought if I haven’t got it, then there really is something wrong. I didn’t see having Asperger syndrome as being anything wrong. So I just needed to know.
 
I mean I was started to think … I was getting all bad back trips into my past and hearing my Mum going, “Why do you always have to have something wrong with you? Why can’t you be like everybody else?” And I was thinking, perhaps I am making it up, perhaps I am imagining it. Perhaps I have got Munchausen’s syndrome or something really sinister or, may be I am really, I really am mentally ill. So I needed to know. It was stressing me out. So that is why I went to get the diagnosis.
 

Laurie says the hardest thing about Asperger's is the difficulty she has making friends.

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So, yes, but that is probably the hard thing about having Asperger's, you haven’t got… it is difficult making friends.
 
It is quite a mystery to me because it was good experience working in an office environment because you see how other people work, and how other people do it, and a girl came into our team, and she started just after me and before you knew it, she had got phone numbers of people and she was going out in the evening with people, friends that she had made at work. And I was like, “How do you do that?” Because at the sight of other people, I know people who are donkeys years younger than me and they seem so grown up and I am just not really very grown up and I am often not very good at being grown up and I just feel little and everybody else is so big.
 
I just feel like a really tiny person in a huge big world and that sometimes it feels that it is just happening all over there somewhere and I am living in a bubble or living on the other side of a plate glass window to everybody else and that is something that a woman called Donna Williams described in one of her autobiographical books and she is a woman with autism. And reading a thing like that, it is yes, that is just what it is like, you know, people say things that I have said in a slightly different way. I said it is like living in a bubble. She said it is like living near the side of a thick plate glass. It is like being here, but not really being part of what is going on.
 
It is like you are just a spectator in this thing, you know, and it is kind of like really hard being alive sometimes and I go through when I wonder just how much long I have got left, you know, because I really don’t want all this pain in my life, living with pain, daily. And it, it gets tiring and I don’t want to keep hurting and I don’t want to hurt every day and I don’t want to struggle through things every day. I don’t want to have days where I can’t feel the rain on my face, or the wind in my hair because when I don’t notice things that I can pick up and touch and are real because everything just goes surreal and, and life just hurts, just hurts being alive. And that is quite hard and that is probably something that is in common with other people with autism too.
 

Laurie describes feeling like a 'really tiny person in a huge big world'.

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I just feel like a really tiny person in a huge big world and that sometimes it feels that it is just happening all over there somewhere and I am living in a bubble or living on the other side of a plate glass window to everybody else and that is something that a woman called Donna Williams described in one of her autobiographical books and she is a woman with autism. And reading a thing like that, it is yes, that is just what it is like, you know, people say things that I have said in a slightly different way. I said it is like living in a bubble. She said it is like living near the side of a thick plate glass. It is like being here, but not really being part of what is going on.
 
It is like you are just a spectator in this thing, you know, and it is kind of like really hard being alive sometimes and I go through when I wonder just how much long I have got left, you know, because I really don’t want all this pain in my life, living with pain. Daily. And it, it gets tiring and I don’t want to keep hurting and I don’t want to hurt every day and I don’t want to struggle through things every day. I don’t want to have days where I can’t feel the rain on my face, on the wind in my hair because when I don’t notice things that I can pick up and touch and are real because everything just goes surreal and, and life just hurts, just hurts being alive. And that is quite hard and that is probably something that is in common with other people with autism too.
 

Laurie has been offered a laptop and a recorder but said no to a note taker because she didn't...

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Does the university provide you with support?
Yes. I think so. Well they are yes, because I have gone through the disabled students and everything. I mean obviously it is something I got through, I got into well into my forties I managed to get through things, however much I might have fumbled and stumbled and stammered my way through life I have actually managed to get this far and but if it is available and help is there, I thought it would be a good idea to actually take it. There is a two training, a two day induction for disabled students next week and it is on Thursday and Friday. I am actually only going to be able to go on Friday, because on Tuesday, Wednesday and Thursday I have got my training for the market research job, so I can’t go on the Thursday which I am sorry about because most of it doesn’t look especially relevant. So if I show my face then I will be happy. I just didn’t especially want to spend two whole days doing stuff that might not be that interesting. But yes I can’t remember the question now.
About support…
Yes, yes, they’re giving me a lap top... and one of those recorder things. They have offered to give me a note taker, but I declined. I wasn’t sure what I would do with piles of notes.  I mean if I don’t take them, I don’t know about that sort of thing, if I don’t take the notes myself, I mean, I might, I will just end up with more bits of paper on the dining table and it is like covered in enough bits of paper as it is of various things that I can’t remember what I am supposed to do with them. I don’t know about taking notes.
 

Laurie recommends a book 'Pretending to be Normal' that was 'like finding a diamond in the dust'.

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The book that I got first that, I read first, just the very title of it made me want to read it, because I just, it is like picking up, finding a diamond in the dust. I just saw that is exactly what it is like and it is by   Leanne Holiday Willy and it is called ‘Pretending to be Normal’ and just the title of the book, ‘Pretending to be Normal’ I am going that is exactly it. You would spend your whole life trying to do what you think other people are doing. Or you try and behave the way you think other people are behaving just so that you can kind of get through. I spent so many years of my life, trying to do this and trying and to do that, just so that, you know, perhaps my Mum would like me. And the things like that don’t work. You know.
 
You treat yourself like an ill person. If I do this I will feel better. If I do that I will feel better. If I do this, you now, everything will be fine. And it isn’t. And that was such a good book. And Donna Williams had a good book as well. I can’t remember the title of the book, but I think I have read two of hers. I haven’t read disappointingly very many by men. But I am reading a book at the moment, slowly, called, ‘Managing with Asperger's’ and it is by a guy called, sorry, Michael I have forgotten your name. Michael... and we email each other now and again. But those… yes, Donna Williams was good. Leanne Holiday Willy was good. I have read two of her books. I have to say that I haven’t read any for ages. I just went on this big obsession reading as much as I possibly could and they were the ones I found most helpful.
 

Laurie finds organising her life difficult; since she has been working more the house has become...

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I am all right at work because I have got nothing else to think about, but at home I have things to think about like all the domestic things like housework and laundry and shopping and cooking and trying to spend time with the children and getting myself to work. It is really difficult keeping on top of things and I I was all right while I was living on my own and all the things didn’t get totally upside down, but there are four of us now, and it is hard. I don’t know what to do with stuff, to organise all these things that I am supposed to do. I get a bit lost.
 
Is it a sort of organisation thing then?
 
Yes. I know what days I go shopping. And I am good at washing clothes, but it is when the mail comes in the morning and I think well I need to ring this person up or need to deal with that. And I can’t always do it straight away, you know, because I have got work and stuff like that and I don’t seem to be that great at going to work and looking after the house. I mean it has been a lot untidier and more chaotic since I have been working so much. It seems like when I had the time I didn’t have the money, and now I have got the money I don’t have the time, and I just can’t be everywhere doing everything all once. Its yes, it is organisational and I can’t have more weeks in the year to get extra stuff done.
 
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Laurie thinks that 'your brain is wired differently from most other people'.

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Do you have any idea about what causes autism?

 

You hear different arguments don’t you? They say it is genetic or you know, it is genetic or it could be caused through a trauma at birth or soon after birth. You are still going to have always have the endless debate about the MMR vaccines and stuff like that. I don’t know. I think the jury is still out on that. I think a lot of, you can break your leg in lots of different ways. I think at some point they will probably conclude that all of these things can cause it or contribute to it. I think that sometimes, you can, I personally think you can sometimes acquire it, if for instance you have, at any time in your life you can have some kind of brain damage, but I think it does tend to be, not brain damage, it is just that your brain is wired up differently from most other peoples.
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