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Debbie - Interview 19

Age at interview: 44
Age at diagnosis: 35
Brief Outline: Debbie was diagnosed with Asperger syndrome when she was 35 years old after experiencing bullying in the workplace. She now does voluntary work and looks after the home for her father.
Background: Debbie, a full time homemaker, lives with her father and is 44 years old. Ethnic background/nationality: White British.

More about me...

Debbie lives with her father and is aged 44. Nine years ago, after experiencing bullying within the workplace, Debbie and her mother decided to push for a formal diagnosis of Asperger syndrome. Debbie’s mother had always suspected that her daughter was on the autistic spectrum but had got nowhere pursuing this in the past. Debbie asked a local autistic society and was given the name of clinical psychologist. The GP referred Debbie to the pychologist. Her mother was given a 48-page questionnaire to fill out, the clinical psychologist saw Debbie and made the diagnosis.
 
Debbie describes getting the diagnosis as the best day of her and her mother’s lives. Her mother had struggled with her for 35 years without any support and described it as a lonely journey. Debbie’s mother died four years ago and Debbie now looks after the house and does voluntary work.
 
Debbie does not like change, making choices, loud noises or crowds. She is very literal and while she leads an independent life, does need some support. It has been difficult to find appropriate support since her mother died because available services have not met Debbie’s needs - for someone who is kind, patient and with a good understanding of Asperger syndrome.
 
Debbie is involved with a local support group for parents of children with Asperger syndrome. She enjoys going on the internet, knitting and cross stitch. She thinks the hardest part of having Asperger syndrome is the lack of acceptance by other people and the way in which people will not make allowances for her. Her faith has helped her enormously and she feels positive about the future.

 

Debbie and her mother had looked into whether she might be on the autism spectrum when she was in...

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Well I had I had got a job in office work, but I was very badly bullied and it ended up that I had to – my employment was terminated due to ill health and my mum realised that something wasn’t right and well she had always had some sort of thought that I could be on the autistic spectrum. Well anyway unbeknown to her I did some of my own research because I actually told the personnel officer at work that I was autistic because I just wanted to I needed a way out, because I was in trouble, you know, I was being threatened to go before the disciplinary procedure, you know and it was all… then I had done some… so I did some research myself and I sort of had me suspicions as well.
 
And unbeknown to me my mother had been told about Asperger syndrome by a friend of hers, because her son had Asperger's and when she was told about all the symptoms she just… she was really certain that I did have this. So we decided that we wouldn’t be fobbed off any more and that we would push for formal diagnosis.
 
So firstly I went to go … I went to see my GP and told him about it and he said, “Go away and let me think about it for about a fortnight.” And then so me and my mother both went back in a fortnight to see him and during that time, I had with some stuff that my friend had lent me I found the contact details of the, of the [county] and I rang somebody up related to them and he directed me to a clinical psychologist at the hospital and so when me and my mother were at the, at the GP’s, we asked, we said that we have been recommended somebody so we would like you to refer you know me to him. So he did that. We had about an eight week wait and then there was a phone call from the secretary saying that blah blah and all that and she said she would send, in a few days she would send a 48 page questionnaire for my mother to fill out, all about me.
 
And so this happened and actually it was the best time of my mother’s life to fill that in and to see all the concerns she had and the things about me that she knew were, you know, knew were true and then a short time after that we were telephoned asking us to go and see this doctor. So me and my mother both went to see him. In fact my mother spoke to him continually for about two hours and I had to wait in the waiting room. And then they called me in after the five, after the two hours, and yes it was as we thought; I was given the formal diagnosis of Asperger syndrome.  
 
Me and my mother were really.. it was probably the best day of our lives. Because she had struggled for 35 years with me and she was never given any help or support you know. She described it as a lonely journey for her sometimes. And we actually went out to the pictures that night to celebrate. So that is what it was like, you know when I was diagnosed.
 

When someone told Debbie that they would start working with her in four weeks, she expected them...

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Well as I say I had this support worker, but I can’t say whether she was any good or not because we never really did anything. We just sat there and talked and you know… and she was paid about £15 an hour just for talking and then we talked mostly about other things, you know, so I can’t really say that she was any good because we didn’t do anything and I lost my confidence. But she ended up having to leave and then I had, I saw the man again and we were discussing me having another support worker and he said, he said, “Well you…” And they said the support worker came to see me to introduce me to her and she said that…, and he said that they would see me in about four weeks.
 
Well I am very literal and if somebody says four weeks I think they mean four weeks and I waited and waited and nothing happened and then I rang up after that and said I thought they were going to be starting in four weeks and the chap said, “Well... it is going to be eight weeks.” I said, “Well really you should say, you know, I thought you meant four weeks.” I said, “You should have told me.” And he said, “Well I didn’t know how literal you were.” Well I thought that was a bit of a strange thing to say, I thought well how literal can any body be. You either are literal or… Anyway I just got distressed you know and I didn’t feel that they were accommodating me or listening to me so I ended that one.
 

Debbie does not like change and was frightened of the vacuum cleaner when she was younger.

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Well I didn’t like change. There were times when she would re-arrange the ornaments in the lounge and I would put them back the way they used to be and like I was frightened of too much noise, like frightened of the toilet flushing and frightened of the vacuum cleaner. Now she didn’t realise that at first but when she saw that in the questionnaire, she was really, you know she was really surprised you know. We thought, you know, well I didn’t realise that. And I like me routine.

... Yes and she did notice that probably I was developing later than her other babies because she compared me a bit with [sister] and my other younger sister.... They were the sorts of things. And I am very literal as well. You know she had to speak to me in a language that I understood. And she also realised that I needed one to one attention, which she always did give me. All sorts of things that she, you know that she noticed about me.

 

Debbie now does voluntary work because she can't cope with pressure, stress or bullying.

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And then what did you do with you finished with college then?
Well I had, I did get, I have had a variety of jobs.  One or two are temporary and one or two were permanent, but you know I didn’t manage to keep hold of them. I have done some temporary office work. I did a temporary and… the job that I, oh yes, when I think about it, I did actually go to an Employment Rehabilitation Centre. It was to help people to get jobs that were finding it difficult and I expressed an interest to do clerical work so they put me in the commercial department and I had to answer the switchboard and do various tasks and then they had some work experience in the office. But after a week they decided that I wouldn’t be any good in an office, you know. I was quite upset at that because they didn’t really give me a chance.
 
So then they put me in the packing department and I was very good at that. At the end of that they managed to find me a job in the place in the next door, packing soles and I ended up being very good at it because it was a repetitive job. And I was there for a while and then they actually moved buildings. They moved over to [town] which was quite a way to go but, you know, I was there for a while, but then I got made redundant because they had to shuffle everybody round and I think they were trying to get rid of me because they told me I had got to do a new job but I didn’t want to, you know, so I got made redundant in the end. But that worked out in my favour anyway because as I was having a lift to work, and then I had to go on the bus and I had to get up extremely early and it was really just tiring me out.
 
And then after being made redundant, I just got, you know, some temporary jobs and this that and the other. I got, I did get a job, was successful in getting… well it is a called a writing out clerk/VDU operator. It was at a watch distribution centre and I had to do VDU inputting, inputting customer’s information and what they wanted for their watches, you know, the type of thing that they wanted mending. You had to read customer’s letters to find out and then you fill in these little forms which would then go to the VDU operators to type in but I found it quite pressured and I was, they kept pestering me to do more and more and I just couldn’t cope with either of the jobs.
 
And I was bullied very badly by the manageress. You know she used to humiliate me etc. In the end I just couldn’t cope with it and then I went to see the personnel officer and she said, “I think you would probably find it would be less pressured if you went into the packing department.” So I went in there and I held that job for seven years. I was really good at it. And I really liked it. it was repetitive but then I had a breakdown and had to leave and spent a short time in a psychiatric hospital which wasn’t very nice. But then I sort of got better and left there...
 
And then I got, to aid my recovery, because I was suffering from chronic fatigue syndrome dad bought a computer and I started to play around with it and rather liked it. So to help me get out of the house a bit I decided to go to college and I went on a computer course and things sort of went from strength to strength there. I did a computing and office course and then I have done NVQ level one and two, in administration. I also did RSA Tech/wordprocessing level one and two and got a distinction in all parts. And I was sort of retrained really to become computer literate.
 

And then I got I got a job at a hospital but I was very badly bullied there. And that was what I was saying then I had a really awful time there. And that is what made us decide to push for a diagnosis.

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Debbie talks about her experiences of further education and the different courses she did.

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I wanted to care for people. I really fancied the idea of being a care assistant in an old people’s home. So I went to a College of Further Education and to do a year’s course called ‘Caring for People’.  That was a really good course actually, I really enjoyed it. I had to do a placement in a playgroup which was really, really good. I passed that course and then after that I went on to a two year course called ‘Preliminary Course in Social Care’ and that was for two years. The first year I had to do placements in a play group and in an old people’s club. That was for the first term and that. And the second term I did a placement in an infant school which I thoroughly enjoyed and the last term was in a junior school.
 
And then the following year we had to do placements in residential settings. The first term I did a placement in an old people’s home for people who are blind. That was all right but I did find it difficult to cope. I found it difficult to cope with doing physical work, like looking after them physically. I just found it too much. And the officer in charge wasn’t very nice to me either.
 
And then the second term I went to a place called [nursing home]. You see I really wanted to go into a children’s thing but they put me in an old people’s home. I mean it was all right, but unbeknown to me the Mother Superior, because it was a convent, rung my mother up and said they didn’t want me there because I was a liability. And my mother didn’t tell me this at the time because she knew it would probably really upset me. Anyway it looked as though I wasn’t going to pass the course. So in the third term of that second year they, I did a placement in the college library because they didn’t know what else to do with me. But it was the best thing that ever happened to me because then I realised that I would get on better doing clerical work, you know, and I got on really well at the library. I did fail the course but I was offered the chance of doing resit, you know doing some of it again, but I said no, it is not for me.
 
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Debbie did not feel that she had an impairment while her mother was alive.

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People not accepting me or making allowances for me. I think that is the thing I find hardest about it. You see you are really only disabled by society because obviously when I had me mum I didn’t even feel as if I had an impairment, and she enabled, by the way she dealt with me I was able to cope with different things, but then when she died and it was totally different you know.
 
Well probably because I have a faith and because I know that god loves me as I am I do accept myself, so maybe things aren’t maybe as, I don’t know, maybe I don’t find it as difficult as others, but I don’t like people pressuring me and things like that, you know... But I suppose that the main thing is if people don’t make allowances for me I think that is what I find the hardest of all. The bullying, yes, because I am, with my impairment there were times when probably I don’t cope as well as perhaps you would, you know, I think that is the hardest part of Asperger's syndrome.
 

Debbie describes how she has not been able to get the support she needs.

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It was… it took a long time for me to get a social worker. The advocate had to keep pushing  and … but then eventually this social worker happened to come across my folder at the bottom of a pile. I think it had been forgotten about and she took up my case. The very first time she came to see me I was really reluctant to talk to her because I was only used to me mum. I sort of did talk to her, but it was very difficult. I didn’t know what I wanted or what not and the thing is they don’t… when you are an adult they don’t listen to the parents because they think that you are an adult you can make decisions, but what they don’t realise is that people with AS still need that guidance from their parents.  

 

Well I can’t say I am all that thrilled with the  outside caring professions. I have had some bad experiences … When my mum was alive, when we had been diagnosed after a while  somebody said that I would need a social worker. Well after a while, mum and dad were planning to go away for seven weeks and I had never really been left on my own for that long and she felt that I could do with some sort of support network so if anything went wrong, of the unexpected, and so  there was somebody that I was working with at the time, sort of being, supportive every so often and she sort of found me an advocate that would help me push to get a social worker.  That is what this advocate did.

 

So it was all right. And we were telling the social worker that I can do a lot for myself and she said, well you are going to find it difficult to get help because you can do a lot for yourself which sort of took away me confidence a bit because I was, you know, quite bothered about wondering what would happen when something did happen to my parents. [5 sec pause]. But she came every so often you know. I didn’t have any support  while mum was alive, you know, and then mum died so I didn’t know how I would manage without her and I asked the social worker to set up some sort of support, an outreach agency that specifically dealt with  autism and Asperger's syndrome and started telling them, but it wasn’t very suitable because I can only cope with  having the one person. I can’t cope with too many changes.

 
I would have to see one or two or three people and I just found that difficult so I stopped it. And then  there was – I heard of a specialist agency that supported people with Asperger's syndrome to, like to live independently and did home care and then  I decided to try them. Well it didn’t go very well to begin with and the first  support worker they gave me, hadn’t even been trained in Asperger's Syndrome and it was very difficult for me and for the person because she didn’t know what to do. She ended up leaving and I was sort of saying to this person, “Your support workers need to be trained before you put them with anybody.”  So then they gave me another support worker. She was nice but during that time  I told the man in charge, you know the type of difficulties that I had and the kind of support that I needed, but it just seemed, he just wouldn’t listen you know. I felt as though it all fell on deaf ears which was very distressing for me.

 

Anyway after a while this other lady started coming on her own but it didn’t work out. And I told this lady how, I wrote some things on, some information about how I needed her to relate to me but she got rather defensive and upset, you know, and I didn’t like that. And so I sort of told the man in charge and things like that and he said, “Well actually she has got family troubles she is not coming back.” And then I thought of emailing the chap.

 I said this is what I want to see in a support worker. I need somebody that is patient and kind and have a high level of understanding of Asperger's syndrome. He said, “Well I know that you want this, but we can’t guarantee it” which I thought was a bit strange and so I decided I just can’t cope with this. [cut some here]  all the man said, was that I was asking too much, you know, you know asking for somebody who was patient, but I thought that was a bit ironic because that is what people like me need, you know, and I felt as though I had been treated very unprofessionally and because of that I just don’t think I could cope with having any outside support because I have lost my faith in them. 

 
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Debbie describes her schooling from primary school through to secondary school.

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I first went to playschool when I was three and it was looking as though I would have to leave, because they couldn’t cope with me. I was having problems. I was just crying and screamed the whole place down for about a fortnight but they did have another assistant and because she could offer me the one to one attention I needed I was allowed to stay. It was all right.
 
And then my first day at infant school I didn’t want to go and my sister had to drag me there, you know. And that was, I had some really nice teachers there. They sort of, they made observations that I did have problems, you know, and they sort of dealt with me in a really good way because even then it wasn’t really known, Asperger's Syndrome. But as I say the headmistress was a bit of a strange woman. I don’t think anybody liked her, was scared of her. I was scared of her and she didn’t really understand me. You know there were times when, one time I wouldn’t put me hands together or close me eyes in the hall and then she made everybody, she made me do it in front of everybody and it wasn’t very nice. And then there was one time when, if you were a server for the food, you had to eat all of your food, regardless of whether you liked it or not, that sort of thing. And – I think she mentioned to my mum – autism and I also had to go to her for writing lessons. I was really scared of it.
 
The junior school was a lot better. In fact I had some really good times there and I really enjoyed it. But I remember one of the, one of my teachers in the infants said to my mum, “She is going to have to cut the apron strings. Otherwise she won’t cope with junior school.” So they were really, you know, dealt with me really well. 
 
The bullying sort of started really in the high school. You know I was bullied quite a bit because I was different but I had a really good best friend who used to stick up for myself you know, so I some how survived it.
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