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Karen - Interview 23

Age at interview: 39
Brief Outline: Karen's daughter was diagnosed with Asperger syndrome when she was 10 years old. She has since been diagnosed with Oppositional Defiance Disorder and her mother has removed her from school because appropriate support was not provided.
Background: Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British

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Karen, a full time carer, lives with her two daughters who are aged 14 and 12. Karen describes a general growing realisation that Nicole was different to other children. Nicole didn’t cope with change well and was not sociable with other children. Her behaviour was difficult at school and the family were referred for counselling because the school felt that Karen was not disciplining her daughter sufficiently. A clinical psychologist who sat in on the meeting suggested that Nicole had Asperger syndrome and she was formally diagnosed when she was ten years old. Since then, Nicole has been given the additional diagnosis of Oppositional Defiance Disorder.

Nicole has a number of obsessions including the number three, washing her hands and fears about being watched. Her passion is horses and, while she can be generally clumsy, she is an accomplished horserider. She is intelligent, artistic and loves playing computer games.

For Karen, the biggest battle has been with education. Nicole has found school very difficult and the schools she has attended have not provided appropriate support. Karen decided to home school her daughter when Nicole’s health deteriorated as an outcome of the stresses and anxieties associated with school. This was not successful, however, and Nicole returned to a school twenty miles from home on a reduced timetable. Again, appropriate support for Nicole was not provided and after numerous incidences in which Karen was called into the school about Nicole’s behaviour, Nicole left school during the day and was found walking along a country road by a motorist. Since then Karen has kept Nicole at home and is fighting to get her a place at a specialist residential school for children with Asperger syndrome.

Karen has not been able to work over the past few years because of constant meetings at school and phone calls about Nicole’s behaviour. She feels that the education authority and professionals have treated her as an enemy rather than working with her to support Nicole. There have also been considerable financial implications because Karen has not been able to work and the experience has had an impact on Karen’s relationships with family and friends.

 

Karen gradually noticed her daughter was developing differently.

Karen gradually noticed her daughter was developing differently.

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Okay it was just a general growing realisation that there was just something different, not wrong, just different. That she wasn’t invited to things the way of other children were. She didn’t seem to have as many friends as some of the other children were, she wasn’t invited back to people’s houses, she didn’t seem to be particularly bothered about inviting anybody back to our house. And then during my divorce from my ex husband her behaviour just became very, very difficult, and I had a lot of problems around child care. She didn’t want to either go to child carer’s or have anybody come to the house. She just wanted to be with me which caused problems for going to work and things. And it was just a steady sort of growing feeling that there was just something not quite right and because I have got a younger child than Nicole, who behaved very differently, who was very sociable, was invited to peoples houses, coped with changes in circumstance quite easily.
 
You know the big sort of telling thing when things really started to become apparent was when we moved from London to the Midlands and Nicole had you know a big change, you know change of area, change of school, I had a nanny, I employed a nanny and my younger daughter was to coin a phrase was like you know, it was like a duck to water. Okay I am at a new school, these are new children. I am going to make some friends and I am just going to get on with it. Whereas with Nicole there was just problems from every quarter, you know, my nanny was experiencing problems, the school were experiencing problems. At home her behaviour was becoming more and more difficult to manage, it was just everywhere I turned there just seemed to be difficulties with her behaviour and that was when you know I started going in for meetings with the school and we were actually referred to family counselling because the school felt as a single parent the school felt that because I was a single parent that the problem was actually the way I was dealing with Nicole, the way that perhaps I wasn’t providing sufficient discipline.
 

A psychologist sitting in on a family counselling session suggested that Nicole may have Asperger...

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A psychologist sitting in on a family counselling session suggested that Nicole may have Asperger...

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So we were referred for families counselling and a clinical psychologist actually sat in on that meeting and then asked us to go back and just see her and she identified from that initial meeting that potentially Nicole could have Asperger's syndrome and it took another about three months of meetings, not weekly or anything you know once every six weeks, filling out forms, answering questionnaires me going on my own. Nicole being spoken to on her own before they then actually gave me an initial diagnosis of Asperger's syndrome.

 

Nicole has a lot of different obsessions.

Nicole has a lot of different obsessions.

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She is quite obsessional. She has got quite a lot of different obsessions; the number three; washing her hands; how she showers; having the curtains closed. I have had to tape cardboard over the extractor fan in the bathroom. She feels that there are cameras trained on her and people watching her which a lot of these are quite common in Asperger's. Because individuals with Asperger's have the intelligence but they don’t have the understanding to reason those things out like we would so you know. Yes there are a lot of cameras, CCTV and that sort of thing but they are not trained on everybody, they are just there generally.
 

Nicole has hypersensitive hearing which can cause her anxiety.

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Nicole has hypersensitive hearing which can cause her anxiety.

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She has got a tested IQ of 128 which is bordering on superior intelligence but she also has hypersensitive hearing. She can hear a conversation from three rooms always so a fire bell going off can cause her to behave very strangely and if she gets angry or anxious then her behaviour does alter but it is not something that she has got any control over.
 

Nicole loves horses and likes playing virtual horse games.

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Nicole loves horses and likes playing virtual horse games.

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She plays on virtual horse games. There is various Equiverse, White Oak Stables, Equicarna, Horseland and basically what you do, is you buy and sell horses, you train them, you breed them, you feed them, look after them and you get virtual sort of player points, virtual money for like winning an event or something like that, so you can buy more horses or something like that and they usually have like a chat room or something like that. But she’s, in some ways, she is very, very mature. She doesn’t like people swearing in the chat rooms. She gets quite cross about that. She won’t put up with people coming in the chat rooms and trying to talk about sex or anything like that. Nicole doesn’t like sex. Its it is all very yucky.
 

Karen feels judged to be the world's worst parent and talks about the effect of her experiences on her life.

Karen feels judged to be the world's worst parent and talks about the effect of her experiences on her life.

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[Laughs] I feel I have been treated like a criminal. I am treated with great amount of disrespect by the education profession. I have had to give up my career. I am actually a telecommunications engineer by trade and had a very good career. I have had to give up work. I am not able to work any more. I haven’t been able to sustain a relationship. Financially I’m about to lose the house because I am not able to work and the benefits system is a maze of difficulties and if you have got a mortgage it is very hard so I haven’t been able to pay the mortgage this month. I have problems controlling my weight, because the stress means that I comfort eat. I am on antidepressants and basically I had a baby and it has completely and utterly affected every area of my life.
 
You know a lot of the time I feel I am judged to be the world’s worst parent. It has actually caused a breakdown of my family relationships. My mother and I don’t speak any more because she doesn’t believe in Asperger syndrome. I am just a weak parent who doesn’t discipline her child properly, even though my younger daughter doesn’t have any of the behavioural difficulties, Nicole does, at all. And she is parented in exactly the same way. In fact her parenting is probably a little less strict then Nicole’s because I have to be firm with Nicole and very rigid. And apply the rules very evenly and fairly, you know we all have a timetable that is kept on the wall so every, you know all day, every day, we are all timetabled so Nicole knows what is happening and where we are all are.
 
So really having a child with Asperger syndrome has actually caused me really to lose everything. I have got friends who won’t come and visit, who we are not allowed to go and visit because they don’t like Nicole’s behaviour. They feel she is rude and ill mannered. So yes [laughs].
 

Nicole found the transition to secondary school very difficult and “mentally and physically” she...

Nicole found the transition to secondary school very difficult and “mentally and physically” she...

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I think out of everything education has been the battle. Obviously, you know, getting a diagnosis if I have had my suspicions and I had have approached the health care professionals then you know perhaps I would have had a different experience, because I know parents who have had that experience, where they have sought a diagnosis because they know something is wrong and they haven’t been given a diagnosis. They have had to fight for one. But we seem to stumble into a diagnosis by accident really. Still didn’t make it any easier and as I say the 12 months wait for the confirmation by the speech and language therapist made a big difference.
 
Getting that sooner certainly would have helped because by the time we got the diagnosis Nicole was in her last term of primary school and she got minimal transition support to secondary school and I actually had to withdraw Nicole from secondary school seven weeks after she started because mentally and physically she was just falling to bits. She lost half a stone in weight and she is very slim anyway. She had continence problems and it just got to the stage where I physically couldn’t get here through the door any more and the school’s attitude was well she seems fine while she is here but it was because she was just shrinking into the background. She was just making herself very small and very quiet and just sort of disappearing off the radar.
 
But once she came home all of the fears and frustrations of the school day were just coming out in bucket loads. You know, she was very aggressive, very destructive, she wouldn’t eat, she wasn’t sleeping and the school at that time she was at school action plus, and I asked the school about getting her a statement to get her more support, get her more help and was told that they didn’t feel that she was severe enough to warrant getting a statement of special needs and that they wouldn’t support me if I applied for one.
 

Karen describes the situation leading up to her daughter’s formal exclusion from school.

Karen describes the situation leading up to her daughter’s formal exclusion from school.

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They also looked into the subject of transport and taxi to and from school which meant that Nicole would be attending school full time whereas she had only been attending school for 20 hours a week. She would then be going up to, I am not quite sure how many hours a week the full time table is, 30 I think, so it was a big jump. And no transition work was done, you know, Nicole didn’t, the school hadn’t sorted out the timetable so we couldn’t talk about who was going to be teaching Nicole in September. We couldn’t talk about which classrooms she would be going to.
 
And a teaching assistant was employed in the June she came in for a week to meet Nicole and just familiarise herself with the school and it became very apparent very quickly from when I first met her that it wasn’t going to work. She was an older lady who had worked with a severely autistic child and before she even met Nicole I said to her Nicole is a 13 year old girl who has Asperger's syndrome, who is very intelligent and hates being patronized and Nicole was brought out to meet the lady and she went, “Hello Nicole, how are you are?” And Nicole looked at her and I just knew that it wasn’t going to work.
 
And that week she spent in school was a nightmare because Nicole made it very clear that she wasn’t going to work with this lady and there was all sorts of problems. So it was decided there was another child starting the school in September that was coming with a statement and somebody had been put in post to work with him and it was decided to swap the two staff around. Unfortunately this lady had no experience of autism, no training, no understanding of autism at all. She was just, you know, a mum of somebody at the school. And when Nicole went back to school in September this lady started at the same time so she had you know no knowledge of the school.
 
We had only received Nicole’s timetable the day before Nicole went back to school so we had no chance to do any work with Nicole on the transition and it all went horribly wrong within the first week. The school had had a new headteacher as well so there was you know a change of management structure and a change of attitudes. The headmaster decided to impose his will fairly quickly onto the school by what word am I looking for, clamping down on the uniform so it was you know top buttons done up, ties done up tight, shirts tucked in. And Nicole’s sensory issues, when Nicole is stressed her sensory issues are actually worse so her hearing is more sensitive, her sense of smell is more sensitive and her skin is more sensitive. So having all the shirt material tucked in around into her skirt, bunched up around her stomach, a tie and a shirt done up tight around her neck, just increased her stress and her anxiety.
 
And there was just from day one in the September there was just reports coming home, phone calls, Nicole was very stressed, you know, arguments, arguments with teachers, arguments with teaching assistants. You know I was ringing the school, and saying what is happening, you know, Nicole is very stressed and it is not working. The new teaching assistant walked out of the school because she couldn’t cope with Nicole’s behaviour and the school persuaded her to come back and stay on as long as she didn’t have to work with Nicole. And by the end of the third week, Nicole had had a two day formal exclusion for swearing at a teacher who was trying to force her to do her top button and her tie up.
 
I argued against formal exclusion. I asked for it to be remove
 

Karen feels that she has been treated as a an enemy by the education system and children with...

Karen feels that she has been treated as a an enemy by the education system and children with...

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I took her out for three days, wrote to the school, explained to the school why I had taken her out of school and that I felt that their, you know their attitude and the measures they were taking weren’t productive, they were counter productive. You know it just seems to be a constant battle and schools just seem to see parents as the enemy, you know, and I have made myself hoarse keep saying to schools, you know I understand that you have a difficult job to do. I understand that you have, you know xx amount of children to deal with, that you have different children with different difficulties, that you have targets to meet. You know I understand all of those things but at the same time I am Nicole’s mother and Nicole is my main concern.
 
And the system isn’t ideal and schools treating me like the enemy isn’t going to help, doesn’t change the system and it certainly doesn’t help Nicole. But a lot of, you know, professional pride and professional ego and things it all seems to get in the way and the schools feel that they are the educators, they know best, and I should just butt out really. But it doesn’t work like that, you know, I can’t help Nicole’s behaviour. I can’t influence Nicole’s behaviour to the degree they seem to want me to.
 
They seem to think that I have got some kind of switch that I am throwing. I mean I have actually been told that they feel that the reason Nicole isn’t as compliant at school as she should be is because I am negative about the education system but I have a daughter who is two years below Nicole who is achieving brilliantly. She’s accessing the full curriculum. She is in top sets for everything. She is getting top grades, top marks, she has got a social network. She accesses after school activities, so if I was so negative about the education system surely that would affect my younger daughter too?
 
You know I have had so much negativity from the education system, you know, down to what do I feed the children, and when I was asked that question I said, “Well I am a vegetarian member of the Green Party who believes in the local organic, you know, well cooked vegetarian food. We don’t have coke, we don’t have, you know, high additive foods and I know Nicole is sensitive to additives so we don’t have that kind of food in the house so if you are suggesting that, you know, I am influencing her behaviour negatively by feeding her rubbish you can just think again.” But the whole attitude seems to come over that children on the autistic spectrum are perceived by schools as bad and naughty and manipulative and devious and that they are in control of their behaviour and that they are behaving badly deliberately.
 

Karen started a support group as the existing one was for parents of pre-school children.

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Karen started a support group as the existing one was for parents of pre-school children.

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So I had a committee meeting because I founded, after I got the diagnosis for Nicole, I actually one of the first questions I asked was is there a local support group and was told no. There was nothing, nothing at all. I have since found out that there is a support group run over at [hospital] but that is usually for parents of children with pre-school, of pre-school age, whereas when we got the diagnosis for Nicole she was ten which is quite common in Asperger's. I think the average age for diagnosis is about 9, 10 because of their verbal ability it is not picked up on as early as classic autism so early intervention for children with Asperger's is not something that usually occurs.So I actually started my own support group in [town]. I have got we have got about eighty people on the books now.
 

Karen thinks there is a genetic component to autism and her daughter is “aspie through and through”.

Karen thinks there is a genetic component to autism and her daughter is “aspie through and through”.

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What do you think causes Asperger's syndrome.
 
I definitely think there is a genetic influence. My ex husband’s behaviour is quite rigid, is one way of putting it. He doesn’t like any alterations to any arrangements. If we arrange to meet at such and such a time at such and such a place then I have to be there. I have had phone calls when I have been travelling on the train from here down to [town] to meet him, saying “You are late, hurry up and get here”, and I have said “But I am on the train. I can’t make the train driver drive any faster.” And he gets quite aggressive if things change.
 
My grandmother was apparently a very difficult character. I’m you know, I could read by the age of three, as I say I was a telecommunications engineer, so I have obviously got that kind of you know, brain. I am left handed, Nicole is left handed. So I think there has been a combination of factors. You know, I had a very good pregnancy. I was very well, very healthy. You know did all the right things so I don’t think there was any impact there.
 
She was born with Asperger's. I mean when she was born I had quite a long labour and when she was born the midwife who wrapped her up in a blanket, said, “Oh she has just given me a filthy look.” She said, “This one has been here before.” And she was. She was a very intense baby. She frowned a lot and she stared a lot and she wasn’t I mean my younger daughter, [sister], was really giggly and smiley and laughed a lot, whereas Nicole was a lot more serious. A lot more intense.
 
We stuck coloured dots on the side of her Moses basket because she just used to lay staring at the side of her Moses bases, so we thought we would give her something to look at so we stuck these coloured spots on the side of the basket. She was definitely born with Asperger's syndrome. You know she is an aspy through and through and I definitely think there is a genetic component to it.
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