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Caron - Interview 15

Age at interview: 24
Brief Outline: Caron's son, Leo, was diagnosed with autism when he was three. He attends a mainstream primary school but Caron worries that he is not receiving appropriate support.
Background: Caron, a full time carer, and her husband have two sons; Leo aged five and Peter aged 2. Ethnic background/nationality: Mixed race.

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Caron and her husband have two young sons; Leo aged five and Peter aged two. Leo was a very quiet, undemanding baby who didn’t smile or want to be held. Paediatricians saw him regularly because of an arm problem and Caron often raised concerns about his development. She was not taken seriously until Peter was born and Leo’s behaviour deteriorated markedly. The paediatrician thought he might be on the autism spectrum and referred him for assessment. Autism was diagnosed with after a three week assessment when he was three years old.

Caron was relieved to get the diagnosis and had already found information about autism on the internet. She would have liked more information at the time of diagnosis and some ideas and advice about how to help Leo at home. Attending two support groups has helped greatly, as has the exchange of ideas and experiences with other parents.

Leo is having speech therapy and he now speaks like a two year old. He has obsessions such as cars, particular foods and so on. He is getting on reasonably well at his mainstream school but finds some aspects of schooling difficult; such as not winning races and interacting with other children (particularly boys). His sleeping patterns are poor which are very disruptive for Caron. He gets on well with his younger brother and enjoys football, going to the park, playing with cars and going on holiday. He wants to be a doctor when he grows up.

 

Caron began to worry when her son was about six months old and did not smile at people.

Caron began to worry when her son was about six months old and did not smile at people.

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We first got concerned about him when he was about six months old. He didn’t smile at people, you know, other children were beginning to babble and say words. He didn’t say anything at all really. He just seemed to be very much in his own world. That sounds such a cliché but we could just put him in his bouncer and the would happily sit there all day and not murmur and he didn’t get hungry or get thirsty, you know, even as he got older he would never ask for things, we would have to tell him, you know do you want something to eat, do you want something to drink. He would never ask for anything. I mean I knew straight away I could just tell. Even though I didn’t have any other children first, I just knew there was something weird about him so to speak.
 

Caron repeatedly took her son to see health professionals but she wasn’t listened to until her...

Caron repeatedly took her son to see health professionals but she wasn’t listened to until her...

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Well the first time I took him was when he was seven months old. He just stopped eating. He had been sick and he had started to vomit when he was eating some food and then after that he just wouldn’t eat anything else again. It was like he remembered or something and he refused to eat. And I took him to the doctor's and I was like you know, “He doesn’t have a smile. He doesn’t put his arms out to me. You know he just refuses to take food. He ignores other people completely.” And the doctor said, “Oh no, there is nothing wrong with him. Some children are just like that.”
 
And I kept taking him and taking him and because he had had a problem with his arm when was born, so he had to see a physiotherapist, so every six months he had to go to the hospital anyway and this was like the [hospital] and he saw the doctor there and he was about two then and I remember the waiting room was full of children and all the other children was playing together and he was off in a corner by himself as always and when the doctor took us in he said to us, he goes, “He is very much in his own world isn’t he?” And I was like, “Yes, that is how he is.” And he was like, “Oh I will make a note of that.” And I thought ooh may be somebody has noticed. But then still nothing. Still nothing happened until [younger brother] came along and that was three years later.
 
So what happened then?
 
He became almost uncontrollable. I suppose it was having somebody else in the house, you know, it throws your routine out completely. And we were talking back… we moved to [hospital] then and he saw the paediatrician there, still about his arm, but that was all fine and then she asked us if we had any other concerns and I told her. I said, “I have been taking him to the hospital all the time, telling them my problems. They just make out that it is me. There is nothing wrong with him.” And she said, she listened to everything, she asked me loads of questions like you know does he play with other children? Can he ask for things? Can he point to things? Can he talk? Because at this point he couldn’t even talk and he almost three and I told her. I answered all her questions and then she said to me, “To be honest with you it sounds like he has got autism.” And she goes, “We will put him down on the list to be assessed.” This was in September, she goes, “He will probably be assessed around the January time.” And she said, you know to go home [laughs]. So we just went home and then in January he was assessed, and oh he was autistic.
 

Caron’s son has eaten the same food every day since he was one.

Caron’s son has eaten the same food every day since he was one.

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What about his diet? Have you tried any sort of change in his diet or anything?
 
I have taken him to a nutritionist and everything. I have tried everything. When I went to the nutritionist he was like, why am I even here because everything he said I had already tried. I tried letting him choose what he wanted for dinner. I tried letting him cook it himself. I tried turning the TV off. I have tried making him pretty patterns, having a play day, like having a knife and fork in our lives, I have tried it all. Nothing works. I have got to the point now where I can put stuff on his plate that he doesn’t like and he will eat around it. Before it couldn’t even be on his plate, you know, so I am making progress.
 
So what does he like to eat then? Chips?
 
Chips. He likes chips and he likes turkey drummers. Occasionally he will have the odd bit of chicken but it has to be in a curry sauce. He won’t just eat dry chicken, you know he likes to have gravy on the side that he dip into. If it is on his food he won’t eat then. You know it is the one area that he feels that he feels that he controls. Although he doesn’t realise he controls his bloody everything, you know, so he has to choose it all. Every day I have to say it, “What do you want for dinner?” because if I don’t and I get it wrong, he won’t eat anything then. You know, so, he eats chorizo sausages sandwiches every day for lunch. He has a sandwich box every single day [laughs]. It is quite boring. He eats bananas. That is the only fruit or veg that he does eat. He eats yoghurts and milk and Weetabix and that is all he eats, every single day, and that is all he has been eating every single day since he was about one.
 

Caron describes the difficulties involved in going out with her son.

Caron describes the difficulties involved in going out with her son.

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Doing things like going to the cinema, we can’t really do that. I found about a place that does autism screening so I will take him now there so if wants to run up and down like a madman I let him. I find it hard going to people’s houses because he will get fascinated by their items and want to touch everything or you know eating out at people’s places, because not everybody wants to have chips, but that is all he will eat. Going out like we went to [town] for my birthday in April and we spent about an hour and a half looking for somewhere that did chips because that is all he will eat, you know, that kind of limits us a bit. Travelling as well can be you know, a nuisance. But if I go I will be prepared for that, you know, he can be okay, it depends on his mood really.
 

Caron’s son counts the days down until his holiday.

Caron’s son counts the days down until his holiday.

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Funnily enough, he is smashing on holidays. He loves them. He is counts the days down. Now that his birthday gone, he is counting the days down for our holiday now. He absolutely loves them. He loves sleeping in another bed and using another toilet. Seriously he does. That is what he loves [laughs]. And he likes going to the beach, he likes just being out of the house. You know he does get quite depressed here. He is always saying that he wants a house with a garden. You know we are trying to make it happen for him but he does really love holidays and it is almost like he is easier to control then as well. I suppose it is because he is taken out of his environment.
 
But we still try to keep to routine, you know, we have, you know breakfast, go out, come back, [younger brother] goes to bed, we all have lunch. And then we will do whatever. But if we let him choose what he wants to do, he is generally better. You know if we said to him, “Let’s go and sit in the pub all afternoon.” He would be like, no. But if we said, “Let’s go bowling.” He would be like yes, yes. You know, so he is good on holidays.
 

Caron says she “dies of embarrassment” sometimes when she’s out with her son.

Caron says she “dies of embarrassment” sometimes when she’s out with her son.

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And what about if you are out in public, how do you manage?
 
I just die of embarrassment. I think, “Oh God.” [laughs] It got to a point like if we went to the Whacky Warehouse or a party or something I would try and wait until everybody else had gone [laughs] before I try and deal with him because I knew as soon as I said, “Right it is time to go.” I knew that he would kick off straight away and so I thought I will wait until every one else goes and then no one will see. That is one thing that I try to do.
 
If I am like in the supermarket I go prepared. I take things with me that I know he likes, like cars, a book that he likes, you know something that I know he likes, so that if he does start I can say, “Oh look at what I’ve got.” And that usually just you know calms him down, you down. And there are ways around it, like I know if I come out of here and I cross straight over he will start, but if I walk up a little bit, down to where the pavement goes down and cross there, which is where we have been crossing every single day since we moved here [laughs] he will be fine. You know so there are ways. You know when something is going to happen, because you know what they are used to and what they need. So you can stop them from kicking off.
 

Caron was not listened to for so long and feels let down.

Caron was not listened to for so long and feels let down.

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I feel like I was let down. That is what I do. I do feel like I was let down. I feel like they should have listened to me more or maybe I should have been able to put myself across more articulately or I don’t know, maybe I should have done research on it then and wrote comparisons, wrote like a diary for [son] and taken it to the doctors, but then I don’t even know if the doctor would have listened to that anyway. So it wasn’t until you know, the health visitor came round to help me with breastfeeding with [younger brother] and she saw [son] and she said to me you know, “Have you got a referral for him yet?” And I was like, “No, I am still trying but nobody will listen to me.” And then she was like, “Well next time you go to [doctor], next time you go to the doctor, just tell them that I think that there is something.” And then that is what I did and then there was a lot more willing to listen as soon as I said “The health visitor thinks…” blah blah blah as well. You know, although it shouldn’t be like that, they should listen to the parents. But you know if that is what you have to do, that is what you have to do.
 

Caron would have liked more information at diagnosis rather than being told to go home and cope...

Caron would have liked more information at diagnosis rather than being told to go home and cope...

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I would have liked the hospital when they gave the diagnosis to give more information yes. Obviously I have been forced to get my own. But a lot of people that I have met who have children with autism, it has all been the same for them as well, they have all said, “Right your child is autistic, see ya.” And then that is it, then, you are just left to deal with… I mean for a lot of people they are not going to be aware that their child has it, so when they do find out I am sure it can come as a blow and then to just be told to go home and cope with it, you know it is stressful, you know, because autism isn’t something that they are going to grow out of, they are going to be like it forever and no where, you know the doctors don’t seem to take that on board, how the parent could be feeling. You know, it seems to just always be about the child and of course, you know, the child is important but the parent is as well, because they are the one that has got to look after the child.
 

Caron thinks information on the internet focuses on high functioning rather than "middle of the...

Caron thinks information on the internet focuses on high functioning rather than "middle of the...

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I went on online and just typed in ‘autism’ and ticked the pages in the UK because I did not want to go through all the American sites [laughs]. The National Autistic Society came up. I read a lot on that and then I did a course, a Speak Out, I think it was called, course, where they told us how to kind of get in the mind of a child with autism, like if I put a woolly jumper on him and he says, “Oh I can’t wear this.” I will know he is not just being, you know, irritating there is a reason why he can’t wear it, like may be the wool you know, hurts his skin or he finds it itchy, or too constricting. Yes. So you know a lot of the web sites were good, but a lot were just full of crap really.
 
There seems to be a general consensus on the internet that it is it all seems to focus on Asperger's and high functioning autism a lot more than just the middle of the road autism, you know, so you get a lot of… ‘oh your child will be, you know, extremely gifted in one area’ blah, blah, blah. And it doesn’t ever tell you, you know, if your child is just normal autistic [laughs]. You know, like my child is. He is not extremely gifted in area, you know, he is just himself. So that, you know, they could do a lot more on that, you know, because when I read all about it and I was like oh well, may be he will be gifted in maths and then I tried to teach him his numbers and realised he is not [laughs].
 

Caron describes the two different groups she goes to.

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Caron describes the two different groups she goes to.

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I go to support groups. I have two support groups. One is, it hasn’t really got a name, it is every Tuesday I think… every last Tuesday of the month at the Masonic Hall. And we all go and sometimes we have speakers in like dieticians and sensory diet people from the educational authority, psychologists, that sort of thing. But I don’t really get a lot out of it like in terms of understanding more. It is almost like it is just good to be around other people that you know are dealing with the same stuff. And I have made friends from that group. I have made two good friends and they have got children the same age as [son] so it is nice to be able to meet up with them. And all the children spaz out as much as they want, instead of meeting with people that have normal children, and they are like ohhh, what is he doing? You know, so I like that. And we can talk about the eating problems, the sleeping problems, school problems, friend problems, and they understand. So I like that. The other meeting that I go to is a Speak Out meeting and that is quite a good one. It is very informative. It tells you about groups that are being run, you know parent help groups, child help groups. It tells you about any benefits you might be entitled to, if they do any holidays places where you could take a child with autism, that sort of thing, so that one is very informative.
 

Caron felt if she “had been a business woman instead of a stay at home mum” she “would have been...

Caron felt if she “had been a business woman instead of a stay at home mum” she “would have been...

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Generally how would you describe your dealings with professionals?

 

I think that if I was more like other business women, a sort of woman, instead of a stay at home mum I would have been dealt with a lot better. I do believe. I think if they knew what I was talking about and I went in there and I was right ‘blah blah blah’, they would be treating me a lot me a lot better then me going well I think there is something wrong with him ‘blah blah blah’. Do you know what I mean? I think they do stereotype, yes, that is what I think.
 
So you are saying not too satisfactory then?
 
No. No. Not when I was trying to get help for him and even now, you know, if I ever try and ring his paediatrician, well I have tried to three times in the last month and I haven’t got a single reply, I can never speak to her and she will never ring back. So it is still not very good no.
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