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Clare - Interview 40

Brief Outline: Clare's younger son, Joshua, was diagnosed with autism just before his second birthday. Clare has used various interventions and therapies and Joshua attends a combination of special and mainstream nursery provision.
Background: Clare, a pharmacist, and her husband have two sons aged 4 and 6. Ethnic background/nationality: White British.

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Clare, a pharmacist, and her husband, Ian, have two sons aged 4 and 6.  Joshua, their younger son, was diagnosed with autism the day before his second birthday.  His parents became concerned about his development a few months before this because his speech was delayed and his development was different from that of his brother.  Joshua had digestive problems from the age of one and the paediatrician he was seeing for this diagnosed autism using the DSM4 criteria for diagnosis.

Clare describes feeling relief at getting the diagnosis because it told her what they were dealing with but also a sense of bereavement because it took away her vision of her son’s future.  The National Autistic Society put Clare in touch with local services and she has been working with an autism outreach service over the past two years to help Joshua learn how to play and how to manage various situations.  

Joshua attends a special nursery for three days a week and a mainstream nursery with support for one and a half days a week.  His speech has developed and he now plays with toys but he doesn’t interact with other children.  Joshua is on a dairy and gluten free diet because peptides were detected in his urine.  Clare describes Joshua as a loving little boy who can be controlling.

Clare has tried a number of interventions and found Picture Exchange Communication System (PECS) and daily timetables very useful. Currently, she is using a programme called Relationship Development Interaction (RDI) which also helps.  It involves trying to get Joshua to think about what he is doing rather than become dependent on prompts from other people.  Clare and her husband attended a three day training course in the US and are supported by a registered consultant in the UK. 

Clare finds it hard that things people would normally take for granted can be difficult to do such as going to the supermarket or out for a meal.  She describes an underlying stress everyday because she never knows if something will upset Joshua but the experience has drawn her family together and made her less judgemental of other people.
 

Joshua

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Can you describe Joshua?
 
Right he’s, he can be a very loving little boy. You know I think it is a myth that autistic children don’t know how to love. That is not true. You know he will come up and he will want a cuddle but it is difficult, because you never know exactly what sort of mood he is going to be in. I said earlier on that he is starting to be able to manage a few more things like helping with the washing machine. He also knows how to do things like put the microwave on, which is great but then if you happen to do it and he is around he can get very, very upset because he wants to do it. So he is quite a controlling person. And if things aren’t you know, how he wants them, he can get upset, he can you know, that is when you might get the hitting or whatever. Or he might just be inconsolable you know, just lie on the floor crying and it is then very difficult to bring him out of that. So it is always first thing in the morning if he has got to be somewhere at a certain time, there is always that bit of anxiety in my head thinking oh you know, is it going to run smoothly or not. And you can just never tell. So yes, he does like to control things.
 

Clare's underlying stress and negative feelings make it important for her to work part time.

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Clare's underlying stress and negative feelings make it important for her to work part time.

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What sort of impact do you think it has had on you?
 
Well I have put on over a stone in weight which I think is probably due to, when you know, I am more stressed I tend to eat. So I think that is it. It is hard as I say there is always an underlying stress there. You get these periods of almost feeling like you are grieving and then you think you have got over it and then it comes back and I think, I think, yes, it is hard because you look at other families and you think gosh you have got no idea at all what it is like. And I mean that is not their fault because I would be the same, you know, its and so yes, its it is difficult. And I think you know the support of family and good friends really does help and its- what do I want to say – as I say it is a totally different way of life.
 
And obviously I work part time. I find that helps because I think if I was at home all day every day I would be really dwelling on the autism and I don’t think that is good. I think, you know, I can feel a lot of negative feelings and you know make you feel, really really sad. So at least by going out to work and having my two and a half days where I have got to focus my mind on something else and I find that does help.
 

Clare’s son is very protective of his brother and is very good at not fighting back.

Clare’s son is very protective of his brother and is very good at not fighting back.

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I think oh I think he finds it hard to understand exactly what it means. I know that he realises that obviously it makes Joshua different from other children, you know, occasionally he will say, “I wish Joshua wasn’t autistic.” And it also made him very protective of his brother at the stage when they were both at nursery together. He would be very protective he would you know be so, anyone doing anything to Joshua you know, he would go up and you know, he would say, “That is my brother. He is autistic. He doesn’t understand.”
 
And so yes, and I mean recently at school I think we had to say a member of the family, or someone special that they were going to pray for and he actually, you know, picked Joshua and he said, “You know pray for my brother because he is autistic and I want to help him.” And you know he is very good. He is very tolerant. He very rarely retaliates if Joshua comes and hits him or scratches him or something. You know he is very good at not sort of fighting back. And he you know if Joshua does something different, you know new for the first time, you know, and he sees it, he will give him a clap and come in and tell you, you know, oh Joshua has done this and that and so that is nice.
 

Clare removed milk from her son's diet after peptides were detected in his urine.

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Clare removed milk from her son's diet after peptides were detected in his urine.

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Looking back I almost suspect he might have had some sort of intolerance right from birth but what triggered it off was just after he was one, he had a really bad stomach bug, like sickness diarrhoea and one of the things, they sort of say stop giving them the milk. So we stopped his milk and every time we tried to re-introduce the milk, the diarrhoea came back. So we switched then to soya milk and removed all the other diary components from his diet, which, worked well most of the time, but we still had these old episodes where he would have, you know, horrible nappies, we were lucky in a sense he was still in nappies. It would have been horrendous if he wasn’t. But because he was young, he was still in the nappies and didn’t really think too much more about it. It seemed to occur a lot more when we were on holiday but couldn’t really put a finger on anything and then once we got this autism diagnosis we heard about this theory that there can be these peptides that can go through a leaky gut and that you could send a urine sample away.
 
So we did that. We sent it off to Sunderland University and it was analysed and as I say they found the bad peptides from gluten as well. So our paediatrician was very supportive of us then taking the gluten out of the diet as well so we did that and that made all the difference. All these occasional bad episodes stopped and when I was thinking about it, when we were on holiday we have more sort of picnics so he has having a lot more bread and a lot more of things with gluten in then he would have normally had when he was at home. So I think probably may be he can take a little bit of gluten but then when it goes up that was just triggering him. You know his gut would get upset again.
 
So he is still on this gluten free and dairy free diet. I have got... my GP’s let me have the bread and the milk on prescription which is very helpful. And I mean that is a challenge really because not that he is going to go into cafes anyway, but even if he was, you can’t just say, oh yes, let’s just pop in here have … you know have a snack.
 

Clare is currently doing an RDI programme with her son after completing a 3 day training course...

Clare is currently doing an RDI programme with her son after completing a 3 day training course...

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We are currently doing a programmed called ‘Relationship Development Interaction’ or RDI. It is a fairly new intervention. We went over to Houston for some training last November and it evolves almost going back, taking your child back to the stage when somewhere in their development they started going off on this different path and it is almost getting them to try and get back on the path. It is like getting them to sort of think. One of the things with autistic children is you use a lot of prompts to help you and they can grow up and then become just totally prompt dependent so someone is there saying oh yes, you know, like we will go out, put your coat on or whatever, they are fine. If the prompts disappear then they are totally lost.
 
So we are working on that and we feel we have had some success with that in the short time we have been doing it. Joshua... certain task like putting the washing machine on, loading the tumble drier and that. He is really keen to help and it is helping his confidence and now we are at the stage where. I say right, you know, it is the purple washing liquid today so we will get that. He will hold the container. I will measure it out and we will put it in the washing machine. I tell him which programme we are having on. He will turn the dial, and it has really helping to build his confidence. So we feel it’s a very good programme. And we are working with him on that.
 

Clare has found the support from an autism outreach service has helped bring her son on.

Clare has found the support from an autism outreach service has helped bring her son on.

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So that was November 2002 that we had the diagnosis and it has really changed our world. I think until you have lived with a child with special needs you can’t really comprehend what it is like but having said that we have had some very good support as well. The National Autistic Society put us in contact with people locally and very quickly our local education authority autism out reach team were in contact with us.

 

And we call them our angels because they came out. They helped us to work with my son because at that time when he was first diagnosed he basically liked to sit in a corner and spin things, lids, plates. He had, I mean before I knew about the autism we thought gosh he has got a real talent for spinning things. Look at this, how clever he is. And then we found out that that was one of the things that autistic children like to do.
 
And I was quite shocked really when I first started to try and do some structured played with him. He could only tolerate about thirty seconds of that and then he had to go away and move away. And it was you know, it was hard because you have to almost like teach him how to play. He didn’t know that play could be fun. He just wanted to be in his own little world.
 
So over the past two and a bit years we have worked together with him, with the autism outreach people. He goes as well to a special nursery. It is about forty five minutes journey in a taxi, three times a week, which he enjoys and they have a specialist autism class there. So he goes there. And we also he currently attends a mainstream nursery for one and a half days a week with some support in there. He has a one to one helper and again autism outreach give him support and all this package has helped bring him on a lot.  
 
We, I mean now he has got speech. He will play better than he used to but we still don’t really have much interaction with other children. I mean I think at the mainstream nursery, while he doesn’t mind going, I think he leads quite a solitary existence once he is there.
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