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Rosie - Interview 18

Age at interview: 53
Brief Outline: Rosie's son, Sam, was originally diagnosed with dyspraxia and then with autism when he was five years old. He attends a special school which has a specialist autism unit which he enjoys.
Background: Rosie, a retired nurse and artist, lives with her partner and youngest son Sam. She has four children aged 29,27,26 and 14. Ethnic background/nationality: White British.

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Rosie lives with her second husband and her youngest son, Sam, aged 14. When Sam was a baby, Rosie noticed that he didn’t move much in comparison to his cousin of the same age. He reached his milestones at an appropriate age and when he was three he became fixated on eating things like buttons, glass, paper and metal. After one trip to casualty, the hospital consultant wrote to Rosie’s GP, Sam was referred to hospital where he was diagnosed with autistic spectrum disorder and severe developmental dyspraxia.
 
The consultant painted a bleak picture of Sam’s future which was very much upsetting for his parents. Rosie then had a battle to get Sam statemented and in the end Sam was given full time one to one support in his mainstream school. After a while, however, Rosie and his father decided to moved him to a private school with smaller classes where he stayed for three years. At the end of this time it was decided that a special school with a unit for autistic children would be more appropriate for Sam’s needs. Sam loves his school and is doing very well there.
 
For Rosie, the lack of visibility of autistic spectrum disorders can be difficult; she thinks that people can be frightened of difference. She and her family do not see Sam as a disabled child. They focus on the things he can do, rather than the things he can’t. 
 
Sam does not interact well with his peers but is very sociable with people who are older or younger than him. He fears changes, cats and loud noises, and is reluctant to wash very often. Sam loves animals and maps and he has an amazing knowledge of films, actors and directors.
 

Rosie’s son had a fixation about eating anything and ended up in hospital after eating glass.

Rosie’s son had a fixation about eating anything and ended up in hospital after eating glass.

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And no one said anything about his milestones. They were all reached. He was walking and he was about thirteen months old and everything was fine, you know. And it wasn’t until he was about three I guess when things started to happen for him and we noticed that things weren’t quite right. He used to have this fixation of eating things. He used to eat anything, absolutely anything. He used to eat food, he was not very good at eating food, even when he was little, he always makes a horrendous mess, but most children do when they are little, you know. But he would eat anything else. Anything that was lying around;he would chew his clothes to pieces,he would eat metal and if there was anything… One incident, he got into the dining room and there were some glasses on the table, you know just wine glasses and he started to eat it. So of course we had to go up the hospital and he had glass in his mouth and it was quite upsetting because the doctor said I wasn’t a very good mother to let my child eat glass and they couldn’t understand why he would want to eat glass, you know.
 
And another occasion was we were washing up and he was standing on the chair helping me and he suddenly drunk loads of washing up liquid and that was quite funny because every time he opened his mouth, great big bubbles came out, you know, and my other children thought it was really, really funny, but obviously we didn’t know if it was serious so we had to have another visit to the hospital [chuckle] and there were endless visits to the hospital because of his eating. Everything you know had to be put away, like, you couldn’t leave anything in the bath or soap or anything.
 

Rosie’s son became happier when he was taken off Ritalin.

Rosie’s son became happier when he was taken off Ritalin.

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So … and he would sit still, he would sit still for hours. He will watch a film from beginning to end and it is just at school really he is hyperactive, but there is so much going on at school and so we went to the clinic and they wanted to put him on Ritalin. Oh I have forgotten all that, yes. So and we didn’t really want him to go on Ritalin but we thought well if it would benefit Sam it would help him access education more. We thought ‘oh well, we will give it a try’ and so he went on it for six months as a trial but it was just horrendous. He was alright at school but it was at home. It was just awful. It completely changed Sam as a person. There were lots of things. He used to cry. Sam is not a child for crying. He is always very happy. And sometimes at night he would cry at bedtime and say he couldn’t stop seeing things in his head and he wouldn’t go to sleep. He would rock. Go like this in his bed and that distressed him because being a child that would normally just go to bed, have a story and go to bed and he would be awake for hours. He would be up and down, up and down, and then he started having physical…. I don’t know whether it was the Ritalin but it is to do with his continence.
 
Sam was very good. He was very good in the daytime with his continence. He would always go to the loo but at night he would wet his bed quite a lot. So I don’t think that was the Ritalin but he’d have pull ups. But when he was on the Ritalin for a while, he would start like messing his pants at night. Not in the day time, just at night and we just couldn’t figure out why he would start doing that and he would wake up… he wouldn’t wake up once he was asleep. He would stay in bed, but in the morning you would find that he had smeared faeces everywhere, all over his bed, all over his sheets, on the wall. And it was really... he got really upset about it. He would hate it. He would cry about it. And we got really upset about it because it was just so unusual and we didn’t know why. The consultant at the hospital wondered whether it was the Ritalin because we didn’t associated with the Ritalin but he did. He said he wondered whether it was because of that and there were lots of side effects to Ritalin.
 
Although we kept a journal for the other doctor and so we went back to the ADHD clinic and said that we weren’t happy. We were going to stop him taking it. And so they didn’t, there wasn’t any improvement at school so much to her distress - she didn’t want Sam to stop taking it - we just stopped him having it and he just went back to his normal self. He became much happier.  He stopped doing any of that with the faeces at night. It just stopped so obviously we decided that that was the cause of that.
 

Rosie describes receiving the diagnosis which was very upsetting.

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Rosie describes receiving the diagnosis which was very upsetting.

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He was referred to [hospital]. He became under the care of [doctor], that is the consultant at the hospital and he did lots of tests on Sam to rule out anything, to see if there was anything else, anything physical was wrong with him and we took Sam to [hospital] for the day to see a consultant there and he had loads of tests and it was quite stressful for him. We weren’t allowed to stay with him. We had to go and sit downstairs for hours and at the end of the day we had a meeting with the consultant and that is when they told us what was wrong with Sam.
 
They said that he had severe development … I can’t say it now because I am so nervous. Well he had autistic spectrum disorder and severe developmental dyspraxia, which would mean , which he said would mean for Sam that Sam probably wouldn’t be able to do most things that a normal child do. He wouldn’t be able to ride a bike, he wouldn’t be able to run because he had lots of physical problems as well. He wouldn’t be able to write or read or – oh I’m getting upset now because it was upsetting - he would never be able to swim and he said he would be a very difficult little boy to look after but when he reached teenagers, when he became a teenager it would be even worse for him and that he would probably have to go on antidepressants and it would be very difficult for us to look after him.
 

Rosie's son does not see any difference between her or 'a complete stranger'.

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Rosie's son does not see any difference between her or 'a complete stranger'.

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As he has grown, his difficulties with his physical side have been marked, because he won’t join in with things and that has sort of like isolated him and also because of his autism and his the way he communicates, not communicates, what am I trying to say … he doesn’t like, he likes people, he loves people. He wouldn’t see any difference between me and a complete stranger. If we went out he would sit on a bus and chat to anybody about anything and make them laugh but then again he would never look at someone’s face and sometimes he can be wary of people his own age. You know his peers. If he meets someone from school he wouldn’t want to speak to them or anything. He would hide behind me, but if it was a complete stranger and they were either younger or older, he would absolutely fine with them. It is quite strange really.
 

Rosie’s son used to put vegetables in his mouth at the supermarket.

Rosie’s son used to put vegetables in his mouth at the supermarket.

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Shopping used to be, its not now he is older, now there is obviously other things but when he was little shopping was a nightmare because of the noise in the supermarket he didn’t like it and he would touch anything. He would pick up everything and that is how he used to investigate things by picking up and putting in his mouth. So absolutely anything he would want to put in his mouth. Like … and all the vegetables he would pick up and want to eat them and you think yes let him have a carrot and he would eat as you go round but he would pick up boxes and it used to be really stressful and other people would look at him and you could see them looking at him and thinking oh there is something not quite right there and you know because I would constantly be saying, “Oh no, we are not buying that. You can’t touch that.
 

Rosie thinks a lot of people don't understand or recognise autism; her son is a 'bit quirky' but...

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Rosie thinks a lot of people don't understand or recognise autism; her son is a 'bit quirky' but...

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It must be difficult if you don’t know anything about autism to understand it. That is the thing that I feel that Sam is up against. He has got autistic spectrum disorder and it is not something you can see. It is not something that a lot of people understand or recognize. If you say you have got disability, people think oh no, they don’t want to know they are frightened, but people with autism don’t look any different and some of them have very odd behaviour which stands out. Sam has. That is what makes him different. He is like a bit quirky I suppose, but that is nothing to be to be afraid of. That shouldn’t a problem for people but I think it is or it is in England.
 
People don’t like people who aren’t normal if you see what I mean. They become frightened and so immediately there is a barrier, immediately. You know, because of teenagers, you know children are lovely but they can be the most horriblest people to each other really I suppose. There is, you know, they can bully, and be nasty if you are different. Everyone wants to fit in and certainly Sam doesn’t fit in with a lot of teenagers so that is why this club is really good, because he fits in well and he is... which is good. It is very good for Sam, because that is the thing; he so much wants to be like everyone else.
 

Rosie’s son doesn’t like it when she goes out in the evening.

Rosie’s son doesn’t like it when she goes out in the evening.

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So he doesn’t like change and if I go out at night for an unusual thing, he can’t understand it. He doesn’t like it. He won’t… it is not that he won’t accept that I have got to go out. He understands that. It is just that it is different and he gets really upset and we can’t leave him by himself because if he wanted to make himself something to eat. He could make himself something but then if he wanted to cook something. He would leave the cooker. Or he wouldn’t switch the kettle on or he has… in the last year he has probably nearly flooded the house three times where he has left taps on and hasn’t turned them off, you know, in the bathroom and in the kitchen. So for that reason he is not safe to be left so [cousin], she is my cousin, she comes, she will come round and baby sit but sometimes it upsets him.
 
And he would want to go to bed before I went out and so that is like if I went at 7, say for instance we were going to a concert, and it wasn’t in [town] and we would have to leave early and there have been times when I have done that. It is not very often but he would get really upset and he would normally cry and he would normally want to go to bed before I left which obviously upsets me. Even though he knows the people coming round, like if my mum and dad baby sit and he would know them but he wouldn’t want to see them. He would want to go to bed. It is almost like he wants to pretend that I haven’t gone out. He would want to go to bed before I went out. I haven’t been out for a long, long time when I have had to get a babysitter in, way before Christmas really.
 

Rosie wants her son to eat properly for social reasons and he would rather eat a lot of one thing...

Rosie wants her son to eat properly for social reasons and he would rather eat a lot of one thing...

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There are certain things he hates. He won’t eat peas. I don’t know why. He won’t… yes, so we have to, he can’t use a knife very well so I really have to cut the food up to make it… If I want him to eat and I obviously do I have to make things really accessible to him so we have lots of … we always have food that isn’t fiddly to eat. We always have it… I always make sure that the things are cut up so … but not things like potatoes because it is important he also knows how to use a knife, so that if we go out to eat, everyone is not looking at him, thinking ‘oh look at that, look at that teenager. He is not eating properly. He is making a right mess’ because he does like going out to eat. It is a social thing, you know birthdays and things we would go out and he loves it, but … so it is important that he does know how to eat properly and use a knife and fork and sit at the table. But that is difficult. 
 
His favourite food is things that he can eat with his fingers, on here, on the sofa and that is how he would eat all the time and so it is difficult for me, because I want him to eat and yet I don’t want him to sit in here and eat because I think he has to have a social awareness that he should eat at the table. That is very, very difficult. And some things he will not eat, he used to eat them but now he doesn’t. He just has, he won’t even like them on the table, things like bananas and grapes. He won’t eat peas. He can’t have anything with strawberries, just anything, anything strawberry, he won’t have anything like that. But it is quite difficult. It is a struggle actually hm. He likes…. When he likes to eat something he would eat a whole packet of things. You know, I don’t really know how that has come about really, but I think he would rather eat a lot of one thing than a mixture. I don’t know. I don’t know if any other people have that, but that is what Sam would like to do and he absolutely loves chocolate tea cakes. He would eat a whole packet of them in about two seconds. He loves them. And I don’t think that has got anything to do with autism. I think that is just that is what he really likes but he would eat a whole packet of them.
 

Rosie’s son has a good knowledge about films and loves going to the cinema every week.

Rosie’s son has a good knowledge about films and loves going to the cinema every week.

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He loves, what Sam loves is he loves books and maps and animals. But he really loves going to see films. Absolutely loves going to the cinema. That is his most favourite thing. He would go every week if there was a film on and he loves watching DVDs and he is really knowledgeable about the actors and the directors and who did the music. If you were to say - oh, he loves James Bond at the moment. He is really into James Bond - “Who did the filming in James Bond for that particular film?” he would be able to tell you. Or where it was filmed and … it is amazing really. But he can’t remember how to spell ‘the’. That’s the... it is quite funny you know.  
 
He loved all of the Lord of the Ring films and he loves the Harry Potter series and he can tell you about all the actors and what other films they have been in and Bill Nighy and all that, but some of the things he can’t.. . He has got no idea, he has got no idea about money. He has got no idea of the difference between a pound and a thousand pounds and a penny. Even though you try to get him to understand and sometimes you think ‘oh I think we have cracked it’, you know and the next day he has forgotten and it is back to the same thing. 
 

Rosie's son has no idea about the difference between 1p and £1000 and if he does seem to learn it, he forgets the next day.

Rosie's son has no idea about the difference between 1p and £1000 and if he does seem to learn it, he forgets the next day.

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He has got no idea, he has got no idea about money. He has got no idea of the difference between a pound and a thousand pounds and a penny. Even though you try to get him to understand and sometimes you think ‘oh I think we have cracked it’, you know and the next day he has forgotten and it is back to the same thing.
 
One thing that we have been trying to do is to… it is important that he understands money. As he is getting older he will have to have his own bank account so we give him some money and we wait outside McDonalds. He can go there about three times a year. It is a special treat to go to McDonalds and we watch him and queues up and one day I gave him I think it was £2 and he was going to get a hamburger. I think this was probably about three years ago and we were outside watching him very pensively and he came back and he was really, really upset and I said, “Well where is your thing?” He said, “The man wouldn’t let me have it.” I said, “Well why not?” And then in the end we found out what he had done he had put his money in the tin. There is a charity thing, he put his money in there not realising and then asked for the burger and he couldn’t pay for it and he couldn’t get his money out. He just didn’t understand why he couldn’t have it.
 
So that is a bit, that is something, that it's quite difficult for Sam to understand money. I don’t know how we are going to get round that. He doesn’t understand numbers really I think, it is not a money problem, it is more the numbers and numeracy he doesn’t understand. He doesn’t understand the difference between five and fifty although we could put five something down and may be fifty and he can see it is more but he can’t work, he doesn’t understand why there is more. I am not quite sure how we are going to get round that when he wants to be a bit more independent you know because when he is 16 or 17 he is going to have his own bank account and he will have to try and be in charge of it and that is something we have got to, you know, try to get him to understand really or have some knowledge about really. But it is quite difficult and I don’t know how we are going to do that if he doesn’t understand money.
 

Rosie's son 'has no sense of personal cleanliness or hygiene or what he looks like'.

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Rosie's son 'has no sense of personal cleanliness or hygiene or what he looks like'.

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He wouldn’t have tantrums. He is not, you know, he is not a boy for screaming and things like that, but it is just his odd behaviour really and another thing he has, he has no sense of personal cleanliness or hygiene or what he looks like and I am really … because now he is fourteen it is really, really important and now he is changing and maturing and becoming a man, it is really important that he looks after himself a bit more. Like he sweats now so he has to put deodorant on every day and he never wants to. It is always a battle and he doesn’t like cleaning his teeth, he doesn’t like combing his hair and he doesn’t worry what clothes he puts on or what a jumble they are because he actually can get dressed now. He never used to be able to dress himself, but he will just put anything on and people will people judge you by what you look like and they will judge him and it is difficult to explain to him how important it is.
 

Rosie describes how Sam could not understand the concept of sitting down and learning.

Rosie describes how Sam could not understand the concept of sitting down and learning.

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 So then he started school and there was a huge battle to get him statemented. They wouldn’t have him statemented before he started school. So he started school and it as very difficult for Sam. He lacked concentration. He couldn’t understand the regimentation of sitting down and learning and he used to eat everything – books, his school uniform, he would wear a uniform to school and come home and all the buttons would be gone in a day where he had eaten then. And of course the teacher used to get upset about it and he has – at school he like to hold people and touch people quite a lot and of course he couldn’t do that and he used to upset the other children and then everyone got upset with him. It was quite difficult.
 
And they said that they couldn’t statement him, but in the end he was statemented and he got 20 hours, that is full time. So they had a one to one person in and she was really nice but after about a year Sam was quite rebellious and he didn’t like it because he didn’t like being different from the other children. He wanted to be the same. And he was quite nasty to her. Not in a physical way. Sam is never violent, he is very passive, but by he wouldn’t do things at school. So they had to rethink about that. So in the end they decided to teach him in a little group and for each lesson have a different helper in and that worked much better until he reached about eight and then there was beginning to get a gap between and all the other things and Sam noticed it more and other children and it wasn’t very nice for Sam, so – and they didn’t know if he could stay at the school so in the end we put him in a private school.
 

Having a baby nephew has been an enriching experience for Rosie's son.

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Having a baby nephew has been an enriching experience for Rosie's son.

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And they are really good to him and actually having [grandson] has really changed Sam because no one knew what he would be like with a baby because he is not very safety conscious and things like that but he is so good with [grandson]. It is amazing. He is very caring. He picks him up. He is very good. He thinks about him all the time. Its it is very good. It has enriched Sam’s life really I think having [grandson]. He likes to push him in his pushchair and I think he understands more about humans really. Humans and how babies are born. And we have gone and it has been like, it has been really good because we have been able to talk about that. How babies are born and about sex because of [grandson] it has sort of made Sam understand a bit more which is good. Yes, so he loves his brothers and sisters.
 

Sam’s teachers have such a good understanding of autism they have helped Rosie to understand her...

Sam’s teachers have such a good understanding of autism they have helped Rosie to understand her...

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The school has really helped me. The school – I can’t praise the school enough - because it has settled Sam down and because the teachers have a real understanding of autism. I am not saying other schools don’t, but they do have an understanding, but the teachers who go to that school see such a huge spectrum of children with autism. There are children there who can’t speak and things and there are children like Sam who are on the autistic spectrum but they love people and it is very difficult for I think, for teachers in a normal school to understand autistic children, but in that school they have a real understanding of it and it helps.
 
And it helps educate me as to what he can do and why he does things and for me to see how Sam sees things, for me to understand how Sam sees the world, helps me…. Not to look after him but helps me, helps me with his needs. It helps me to … how can I explain it… because now I know more about autism and how Sam sees things I can help him access my world in a way. Now I now know that Sam sees everything the same. He doesn’t really understand the difference between a person and an animal and a book. He sees them all the same. He sees them as the same value really. It is quite strange. And he treats them … it is not that he doesn’t love people, he does love people. You know we talk about that sort of … that is what I am trying to do, another thing is to understand emotion. It is very difficult for Sam but the school really help that. They really they really open Sam’s emotional understanding more. They talk about things and they break down things into very, very small things. At the moment they have been talking about sex education and growing up and they are just breaking it down into very, very small components and so Sam can access them and try and understand them so that is good and in that way they educate me because they tell me what he is doing and how he is doing it and that is good.
 
And they have a community coordinator at the school. She isn’t a teacher but it is someone who helps the parents, is there for the parents and carers and the family and like if you have got a problem you go today and he will try to sort it out for you, like I have got a problem with getting Sam to school, and he is keeping…. He knows all about it and but he is not doing anything at the moment. We are waiting to hear from the LEA, but if I am not satisfied he will go in there and he will be my like advocacy for that. And he also acts as Sam’s advocacy as well with things so if there is anything you want to know he will help you with, so that is good.
 

Rosie's knowledge of autism has grown since she was a staff nurse.

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Rosie's knowledge of autism has grown since she was a staff nurse.

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Yes. I did. I did know about autism but not obviously as much as I know now. I know a tremendous lot now. When I was younger I used to work on the children’s ward as staff nurse, but that was way before autism was ever heard of and there used to be children that used to come in and they used to have loads of tests and autism was just beginning to become recognized. So yes I did understand about autism but I didn’t understand about the different types of autism and how it affect individuals in such individual ways really because every child with autism is so different.
 

Rosie has found reading books reassuring.

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Rosie has found reading books reassuring.

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Yes. I did have a book. I have got a book at the moment. It is here actually because we have watched… recently there has been a whole lot of autism on the television hasn’t there? And there was a film recently about the Jackson family. Did you see that?

 

No.

 

I have got it. My daughter videoed it because it was on late quite late, or for some reason, so I have watched that and since watching that the Jackson family is about a family and they have got I think it is four children in their family of seven, they have got autism or Asperger's or types of autism spectrum disorder. And the young boy their teenage boy, has written two books and I have actually got it out the library. And it is there and we were reading it together last night Sam and I. So that is quite good because it is written quite well for Sam. It is written in the eyes of a teenager. It doesn’t sort of say ‘you have got to do this’, ‘you have got to do that’. It just talks about brushing your hair and cleaning your teeth and we were laughing about it last night and reading it. So that is quite a good book for Sam. Yes. 
 
I did have a – I can’t remember what it was. I had a great big thick book that when Sam was diagnosed I bought and I can’t remember what it was called and it is all about autism. I can’t think what it is called though sorry. But that was useful. That was helpful. Because when you don’t know anything about your children and you find they are a bit different, it is quite frightening, very frightening actually. You feel sometimes that you are all alone.
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