Debbie - Interview 19
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...
When someone told Debbie that they would start working with her in four weeks, she expected them...
Debbie does not like change and was frightened of the vacuum cleaner when she was younger.
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.
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.<
Debbie talks about her experiences of further education and the different courses she did.
Debbie did not feel that she had an impairment while her mother was alive.
Debbie describes how she has not been able to get the support she needs.
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.
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.