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Mary-Anne - Interview 25

Age at interview: 32
Brief Outline: Mary-Anne's son, Arthur, was diagnosed with Asperger syndrome, Tourettes syndrome and elements of ADHD and OCD three years ago. He attends a special school which he enjoys.
Background: Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.

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Mary-Anne, a full time carer, lives with her 11 year old son, Arthur.  Before he started crawling, Arthur was a quiet baby who would entertain himself happily for long periods.  He became much livelier once he was mobile and was a very inquisitive child.  He didn’t interact with other children however, and Mary-Anne became concerned when his nursery kept him back for a year.  Arthur was referred to a psychologist who said that he was on the borderline of ADHD but nothing to worry about.

That summer, during a trip to his grandparents, Arthur developed unusual movements with his arms and the doctors suggested rheumatic fever.  Mary-Anne by this stage suspected Arthur had Tourette’s syndrome and asked to be referred to a specialist.   The specialist diagnosed him with Asperger syndrome, Tourette’s syndrome and elements of ADHD and OCD. 
 
Mary-Anne was keen for Arthur to stay in mainstream school and describes feeling devastated when special schooling was suggested.  She had hoped that Arthur would get better within the mainstream environment with the right support however she eventually realised that a special school would be more suitable.  He has made great progress there.

Mary-Anne is glad that the doctor who diagnosed Arthur was very blunt with her and stressed that he had a lifelong condition.  She feels this enabled her to see that Arthur’s happiness was the most important focus, rather than the expectations she might have had for him.  She feels it is important for people to realise that he has problems with facial recognition but this does not mean he can’t form close bonds with people.

Arthur has what he calls ‘habits’ and these include licking his fingers and touching surfaces.   He is a very articulate and intelligent boy who describes himself as “a mysterious boy with mental disabilities”.  He has a great sense of humour and thrives on routine.

 

 

Arthur

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Okay. Well Arthur is 11 now and he is very full on [laughs]. He wants to be busy all the time. He is not a child who would just sit and read a book or would just you know. He kind of… it is like his mind is working overtime all the time but he is very self involved. My sister says he is selfish, very ego, egocentric as they say in the autistic spectrum books. Although when you point out to him that you know, “Oh you know what you have said, you know, that is horrible.” He will go, “Oh I am sorry, I am sorry.” And you know, “I didn’t mean it. I am just joking.” You know. He kind of, he has a… oh how can I explain it. Yes, he wants to be more like, he is quite funny, like on the autism, National Autistic Society thing, their newsletter. There was another one in this last one, about a research study about the mechanisms of personal memory of children with high functioning autism or Asperger's syndrome. So I said to him, I said, “Oh Arthur there is study about…” and I read it to him. And he goes, “My autism is not high functioning. I have control over it,” [laughs] because he didn’t quite get it that you know, high functioning autism is a set thing to Asperger's. You know, it was kind of like that must mean that autism has got control of you if its high functioning, you know.  

 

He likes to… Arthur likes to think, he is very, I don’t know how do you explain it. He is not arrogant but he thinks he is very capable and he knows a lot, like he is very knowledgeable and that because I think I was always worried about his self esteem because I think often, you see, I think that is one of the things, with Tourette’s syndrome and the tics and twitches, if they have got it on their own without the Asperger's syndrome I think they can become very socially aware and conscious of their movements and their habits and everything, but having Asperger's syndrome as well, it kind of, in they don’t have that awareness which can be a blessing in a way, because as I say a lot of children with just Tourette’s, people with Tourette’s syndrome can be very prone to depression because they are so self conscious.

 
Well with Arthur having the Asperger's syndrome as well, which I didn’t know about, but I have always tried to kind of boost his self esteem because it is something that I never wanted, I was always worried that he would have a complex about his difficulties, but it is quite hard getting that balance right, because I think it is kind of gone the other way now [laughs]. And I think it’s a good thing to a degree, as long as I hope this is never a point, where it is like, he discovers you know, that he thinks otherwise, but he is like he wants a girlfriend, you know, he probably wouldn’t want me to tell you this [laughs]. So I said to him, “Well are there any girls at your school?” You know it is kind of like an 11 year old boy normally wouldn’t go to their mum and say, “Oh mum, I want a girlfriend.” You know, but with Asperger’s as it is they kind of do tell you everything [laughs]. He says he wants a girlfriend. So I said to him, “Oh are there any girls at your school?” “No there is only two girls. Don’t like them.”
 

Mary-Ann felt devastated when her son was diagnosed but came to recognise that what mattered most...

Mary-Ann felt devastated when her son was diagnosed but came to recognise that what mattered most...

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How did you feel when she said that to you?
 
Well at the time it was. It is quite hard to explain when she first said it, I was like okay, you know, because people say things and you go okay and then – and my brother was with me and my brother doesn’t really have much of an understanding of Arthur’s conditions. He hasn’t read any of the books. He thinks he knows a lot about Arthur. He hasn’t read any of the books and that and so I was glad that he was there and heard that because I kind of had felt Arthur’s behaviour was my fault. And I kind of felt and sometimes it did sort of did feel like my family said, its just because I don’t discipline him enough or you know, I haven’t brought him up right and you know, and so I was glad that he heard that bit.
 
It was afterwards when I was back at home on my own and thinking about it. First it was devastating because it was kind of like, I can’t make him better and it was really, really hard to accept that and it took quite a while, you know, because you do, it is I suppose kind of, kind of like a bereavement, you know I think you go through that, that denial, that okay, so what can I do to make it right? Okay if I do this, and do that and do that it will all be okay. But yes, I think it was that and then coming to that realisation myself that was important, or what is important is for Arthur to be happy, you know and he wasn’t happy in the mainstream school and he had lots of support. He had full time support. He had two different learning support assistants who were really good with him and I, yes, I could see that he wasn’t… he wasn’t in the right place and that there was nothing they could do about it, you know.
 

Mary-Ann describes how Arthur is very verbal and will talk and talk.

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Mary-Ann describes how Arthur is very verbal and will talk and talk.

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And they are like… because Arthur… with the communication and that, Arthur is very verbal and he talks a lot and he talks at you and he will talk, and so people think, oh well he is very intelligent. Oh you know he is coming out with all these big words, oh you know, and he is very verbal and sometimes… well autism, severe autism, often the children have no speech or very limited speech. So you can find with Asperger's, when people meet them, they can think, well what is the problem? They can’t be autism because he can talk, you know, and it is like, it is more the pragmatic difficulties and that, and you know the knowing when to stop and when to let someone else talk and knowing how to say goodbye, you know how to end conversations and how to start them and it is that, and knowing how to take into account what the other people are thinking, because someone will be trying to go, they are in a rush, and Arthur will be talking and talking and talking. And it is that kind of thing that is more a communication difficulty rather than a speech difficulty.
 

Mary-Ann gives an example of Arthur interpreting things literally.

Mary-Ann gives an example of Arthur interpreting things literally.

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Well I can give you an example. At Christmas time we were over at my brother’s house and my brother, my brother has kids as well, two daughters. And they had all been in his house, and they had all been playing tag and running around and while I wasn’t there apparently they had decided that there was to be no more running in the house. Well Arthur as I said doesn’t sit down. He doesn’t keep still and he paces a lot. And my brother has got a big dining room and then a door and the lounge. So there is quite a long area to pace. And Arthur goes up and down. And anyway, Arthur, we were in the lounge and Arthur and it really bugs my brother actually because that constant movement it can get too much and for my brother it gets too much. Anyway Arthur was running up and down it, because there is a like a little steps and he would run and jump. Okay. So my brother turned round to him and said... What did he say? He said, “Stop running, Arthur.” So Arthur went into slow motion. So my brother turned round and said, “Are you taking the mickey out of me?”
 
And you know, he really made it as if, Arthur had deliberately, was deliberately being obtuse and was trying to show my brother up in some way, you know, which is just bizarre for me, knowing Arthur. Yes, may be, yes, he didn’t listen. Yes, you know, he went into slow motion. I said to him, I said, so I turned round to my brother, I said, “[brother] you need to be… “ I said, “He is not trying to show you up. He is not taking the mickey out of you. You have got to be specific. Tell him to walk. Don’t tell him stop running, because he has stopped running. That is not running.” You know. “You have got to tell him to walk.” And then my brother in law jumped down me, “Oh so you are saying that Arthur is right, and [brother] is wrong and …” and this and that. And you know and it blew out into total thing… and then they were like, “Oh you should have waited and told [brother] later that you have got to be more specific.” And I said to Arthur. I said, “Arthur what were you …” He said, “Well I slowed down. And you just don’t want me to run, because it is not safe going fast. Well I wasn’t going fast.” [laugh]
 

Mary-Ann thinks it is important that people realise that Arthur does not always recognise people,...

Mary-Ann thinks it is important that people realise that Arthur does not always recognise people,...

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I, suppose, no the only one area about Asperger's syndrome, I think there again that we didn’t cover was you know people think that you can’t have a relationship with people with autism, a bond, but you can. And it is there and there is things that you notice when they are really little, like when Arthur was little it is only like when you get the diagnosis then you start to think back and you read about and you think, oh, oh yes I remember that. And that you wouldn’t take like, I can remember with Arthur, because he was always really difficult to take shopping I would like drop him off with my sister and then I would go shopping on a Saturday morning and then I would come back to fetch him and he wouldn’t ever come running up, hello, so nice to see you, you know, or missed you mummy or you know he would kind of stay back and I always used to think maybe he was cross with me because I had left him, but when I actually think back I think he actually wasn’t sure, because with Asperger's syndrome and the autism sometimes they have difficulty recognizing people’s faces and I think he just had to watch to see that it was me, because slowly then he would come up and start talking to me.
 
And interacting, not necessarily talking, but you know. And that and I never knew that that was a problem, and it was only when he went to the mainstream school he… about six months after he had been there, we would see kids from his class out of school and he wouldn’t recognize them. They would say, “Hello Arthur.” And he would go, “Now how do they know me?” And I would say, “Well that is Chloe from your class.” “Oh.” You know and those sort of things people don’t always tell you that those are things that you know, that … yes, facial recognition I think is quite a thing. And you don’t realise that and so it is kind of hard to explain that with strangers, you know, that they don’t recognize you because you are not wearing the same clothes or you are not in the same environment and but because of that it doesn’t mean that the child doesn’t like you, or doesn’t you know, bond with you or can’t, you know.
 

Mary-Ann gives Arthur detailed time checks so that he knows exactly what will be happening during...

Mary-Ann gives Arthur detailed time checks so that he knows exactly what will be happening during...

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But kind of what you have to do, well what I have to do with Arthur every day is let him know what is going to be happening the whole day, give him times, like he knows 8 o’clock is bath time, 9 o’clock is bedtime. And occasionally you know, to start off when you first start with things like that, you can’t have any flexibility around it. It has got to be that now, and that has got to go on until that is routine and then now though, I might say to Arthur, “Well yes, okay, it is Saturday night. So…” I can’t just say, “Okay its Saturday night, so you can go to bed later. Any time.” I say, “Okay it is Saturday night so now you can bath at 9 o’clock and go to bed at 10 o’clock and that he can deal with. You know. And especially when they are young, you can’t just like walk in the room and go, “Right, turn off the TV now. It is time to go.” You know I give him lots of preparation and that.
 
And it is always “Right at that time we are going out. We are going to the shops”. You know and then, “Right we have got half an hour…” And they also kind of find it kind of difficult to judge what they can do in half an hour. So you have to be quite specific. Like, “We have got half an hour and that programme you are watching is going to finish in fifteen minutes time. So if you start to watch another one you are going to have to leave it half way through.” You know, you have really got to let him know and before you go in into a new situation you need to let them know what to expect. It is like, “Right you are going to [support centre]. So and so is going to be there. You will know so and so. You won’t know these people but …” you know.
 

Mary-Ann has found the lack of free time she has hard because of the lack of appropriate respite...

Mary-Ann has found the lack of free time she has hard because of the lack of appropriate respite...

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It is like … and I think they really find it hard to understand that just because your child has gone to school it doesn’t mean that you have got free time. You know.
 
And I mean I don’t think any parents have got free time just because a child is at school and this was kind of at first what social workers were trying to say, “Oh well when he goes to school then you need to socialise, that is when you need to go out and do things”. Like when he goes to school that is when I have got to try and wash the wet sheets and tidy the house and clean up all the mess he has made and spill and I have got to, you know organise doctor’s appointments and I have got to fill in forms and I have got to, you know, think about... there is just so much planning involved I think in being a carer of a person with autism because you can’t, you know, like I say, if I need to, if I need to go to the doctor and Arthur is not at school I can’t just say I take him to the after school club and say, “Can he just come for an hour while I just go off to the doctor.”
 
You can’t do that because they want one to one support which have got to be planned weeks in advance and they have got all of that and also while they are at school, especially when he was still at the mainstream school, you never knew when they were going to call and say there has been an incident can you come and fetch him. Or you know, so you kind of are always on tenterhooks and always kind of thinking well what can I be doing? What should I do and looking for information and you know so I think especially when you are first diagnosed and until… things don’t ever really settle but they do sort of settle and until they kind of settle you always feel I think or I always felt like I was searching, looking, trying to find out, organising things and it is kind of hard to get that me time and that relaxed time and as I say you can’t socialise out of hours because where as with, I have got an 11 year old, okay, so normally if he didn’t have Asperger syndrome or the things he has got, then you know, a friend might phone up and say let’s go round to the pub and yes we could all just go and Arthur would come and he would play with his mates outside or do whatever and fine. Well that doesn’t happen. It is not a reality. You can’t do that.
 
So, you know, and people say well socialise while he is at school. Well while he is at school your friends are at work or you know, it is like when are you going to socialise, you don’t go down the pub at 11 o’clock in the morning you know and it is just ridiculous. You know you can’t watch a movie or go to the theatre or whatever while your child is at school. And professionals, they don’t see that. They see it on paper ‘oh well you have got six hours a day, so what kind of respite do you need?’ [laughs] You know, yes. That is quite [laughs] a challenge.
 

Mary-Ann explains the tension she feels between not wanting people to judge her as a bad parent...

Mary-Ann explains the tension she feels between not wanting people to judge her as a bad parent...

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And yes, and so I do upset people because it is quite hard, because on the one hand you do want your child to listen to other people, but on the other hand, you want other people to understand it from their point of view and it is very hard to do that, you see, and you don’t want, you know, when you are out in public and the child does something that you know is not really socially acceptable, you don’t want people to think that you think it is socially acceptable, but at the same time, you know that your child can’t help it. So you kind of have a battle with yourself too, I think, you know because you don’t want… I feel that people are judging me and his behaviour and I as a person, you don’t want to be judged as a bad parent, or a bad mother or someone who doesn’t have good standards you know. 
 
And so I tried taking Arthur to karate lessons and I mean may be if someone else had taken him, may be he would have stuck with it but I couldn’t handle it because he couldn’t, you know, in karate you have got to stand still and you have got to follow the moves and he couldn’t stand still in between so he had nearly had the instructor going, “Arthur stand still.” And I am going, “Well I know he can’t.” You know, like I said it is kind of a real battle in your own mind because you know you are like, yes I would like him to stand still as well, you know, but I know he can’t although it probably didn’t bother him that he kept saying it, because he would just carry on anyway. It bothered me, you know, so yes, it can be really hard [laughs].
 

Mary-Ann burst into tears when special schooling was first suggested but it has made a ‘huge...

Mary-Ann burst into tears when special schooling was first suggested but it has made a ‘huge...

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But the doctor who diagnosed him was very good because for a long time well at school when they first spoke to me, the SENCO first approached me and said, you know, perhaps I should be looking for a special school for Arthur to go to. I was completely against that, I was devastated. I just burst into tears, I was like, “No, no,” you know, because I kind of had this idea in my mind that if he just had all the right support and everything Arthur would become neurotypical suddenly. You know that all of the problems would go away and so I thought well if I let him go to a special school then later on when he applies for a job and they see that he has been to special school, that would stigmatise him and take you know away any chances. So it was kind of like I wasn’t accepting that this is a lifelong, these are lifelong problems that Arthur has got and you know, just because he is getting all the right support and everything it doesn’t, it means that life will be easier for him and everything, but it doesn’t mean that the problems will go away, you know [laughs]. So I was very anti him going to a special school initially.
 
Whereas at the special school he is at the teachers understand and they can tell the difference between what is just normal naughty behaviour and what is part of his condition. They also have higher expectations in the right areas. You know what I mean? They know what he can and can’t do, what he can and can’t control and it tends in the main stream school I think because the teacher doesn’t really understand and they are trying to do their best, sometimes they let them get away with things that they shouldn’t but then be too hard on things that they shouldn’t be hard on, you know. So whereas at a special school they said, like for Arthur, one of his first targets in the special school was to be able to remain in his seat for the whole of a lesson and that needed to be targeted but in the right way.
 
If you try and do that in a mainstream school and you have got you know 20 other kids or whatever, even with a learning support assistant, you can’t really target that appropriately, whereas if you have got the small classroom and that, it is much easier and it can be done in a way that doesn’t show him up in front of the other kids, you know, because all of the kids in the special school have got their little targets and Arthur’s really, you know, yes he is really a lot happier and he is socialising more then I think he would have ever been able to in a mainstream school because I think the other kids wouldn’t want to socialise with him, especially as they got older.
 
I could see the difference coming now he was in year three. So he was seven, going on eight and the kids were starting to make little cliques and starting to … you know, and they were all into this and that, that Arthur wasn’t and you know and so for Arthur’s, Arthur’s socialisation it was better for him to be in a school where kids would want to socialise with him, you know.
 

Mary-Ann has found some things have become easier such as her son learning not to shout at people...

Mary-Ann has found some things have become easier such as her son learning not to shout at people...

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And as Arthur is getting older some things are easier. Like he had a huge obsession where he hated smoke, he hated smoking, and he hated people who smoked, because he, everything is very black and white for Arthur. There is no grey, there is no maybe, there is no... it either is. Or it isn’t. And he had decided that people that smoked were bad and so it was a nightmare because you know going anywhere, you know people smoke and when he was younger would shout things at them, say things to them, and if we were walking down the road and there was someone smoking he would run into the road to get away from them and all that sort of thing. 
 
And now as he has got older, he still doesn’t like it, he still doesn’t quite understand why they do it, because to him, well it smells horrible. It is bad for you. You are going to get holes in your lungs and why do you do it? He can’t kind of understand it. But if I say to him, “Right we are going to so and so’s house. There might be people smoking outside. What are you going to do? Are you going to be okay with it?” And then leave it up to him to decide. And if he says, yes he is going to be okay with it, then we will go and if he starts I will say, “Well you said…” and that kind of thing. You have to kind of plan all eventualities and you kind of get used to watching when situations might spark off.
 

Mary-Ann found an internet forum helpful for things that were not discussed in books, such as...

Mary-Ann found an internet forum helpful for things that were not discussed in books, such as...

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What do you think has helped you deal with the experience overall?
 
I think reading as much as I can about it, about Arthur’s conditions. The Tourette’s Syndrome Association, have a really good internet site which used to have a forum on it, but they have closed the forum and I think it is such a shame because that really helped a lot because with Arthur’s licking and things like that some of the things aren’t in the books you know and when I put on there saying my son does this, has it got anything to do with his condition. Other people have answered, “Oh yes, my partner he can’t go through a door without licking and touching the door frame. And my child licks shopping trolley wheels.” And you know that kind of thing and it was like, okay, you know, it is part of the condition because your family and that tend to tell you, “Oh no, rubbish, he can stop that.” It is not you know, and I can say because the books don’t have it specifically there because they can’t possibly put all of the information in there, you know. So that is a shame.
 
I mean I have been on the National Autism site and that and that gives a lot of good information. I think reading that sort of information and I say reading books written by people who have had the experience, that have been through it. And when you see it written down it makes you realise that, you know, this is real, it is not just someone saying it, or my imagine, it is not just our experience, you know. So yes, books have been the biggest help. The Carers Association practically because they have helped me to find out what I need, you know, to find help and support through it. The other organisation that was really good was Parent Partnership for school. I mean we had a support worker and she has just left but she has helped us through the whole process and we were very fortunate to have her the whole way through because one of the biggest problems and I think that everybody will find this is that every time a professional changes you have got to start all over again and whereas the lady who helped me she knew the whole history of Arthur’s education and she through us all the way. So it never had to be explained or there was never, “Oh well what about?” because that had already been explored and she knew it.
 

Mary-Anne has noticed consistent traits in herself and other family members and thinks it is a...

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Mary-Anne has noticed consistent traits in herself and other family members and thinks it is a...

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I think, well it is probably genetic. I think for both of them. I don’t think there is a specific cause. Yes I don’t know, but I think research points to genetics and I would say that, I would say it probably is because in our family we haven’t… on my mother’s side I have found out since, because my parents separated when I was young, so I don’t really know my mother’s side of the family a lot. But, but I have found out, because I do know her now, you know, but she has got uncles and things that had tics and twitches and undiagnosed disabilities and things like that. So there is a genetic link. And then I know that the members of my family don’t necessarily have full blown Tourette’s or full blown Asperger's or autism or anything but they definitely have traits which are very consistent.
 
Like a member of the family who doesn’t really need to socialise, you know, or have little habits that you don’t notice, you know, that you can remember someone saying to you once, “Oh why does he always do that?” And you think oh yes, I suppose he does [laughs]. You know things there. And then you notice things in yourself I suppose. I mean I can remember little things like I always used to feel like I had a headache and then used to rub here and then the headache would be gone. But clearly you can’t have a headache around there and its gone, but you know when you are a teenager and that you don’t think about that but when I … you know so there are odd little things that I do and I think I fiddle with my face a lot anyway and you know. Yes, I think it is genetic.
 

Mary-Ann found the doctor's bluntness about Arthur's future helpful and she needed to be told...

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Mary-Ann found the doctor's bluntness about Arthur's future helpful and she needed to be told...

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But the doctor who diagnosed him, I think she picked up that I thought with all the right support Arthur would be normal and develop normally and she said to me when, you know, we went back for our final appointment, she said to me, “You know don’t expect it to get better because as they get older the gap kind of widens,” because it is true you know, while they are kind of little and four or five and all kids are kind of chaotic and running about and into this and into that and you know it is not so noticeable but when you have a 10 or 11 year old who is a boy who is kissing everyone and hugging everyone and all those sort of things, you know that is kind of more obvious that they are not neurotypical [laughs].
 
They are kind of, all the professionals had been very helpful and given me all sorts of tips and that and so you kind of think, that yes okay if I do it all the right way then it is all just going to be fine and it will all just go away, you know and obviously you want to, you want your child to grow up and have a normal life, get a job, get married, and so you do kind of tend to think well it is just the way I am doing things. I know he has got these problems but if I do everything right then it is all going to be fine. Yes, I think that bluntness when I went back and it was like yes, okay, so going to special school is not going to damage his future in any way because it is going to be obvious that he has problems you know, when he is older as well [laughs]. So yes, I think I needed to be told that.
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