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Joy - Interview 48

Age at interview: 48
Brief Outline: Joy's son was diagnosed with Asperger syndrome when he was six years old. He attends a mainstream secondary school and is getting on very well.
Background: Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British

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Joy, a library assistant, and her husband, a computer programmer, have one son aged 13.  When he was a baby, their son met all the developmental milestones. By the time he was eighteen months he had a vocabulary of over 75 words and was fascinated by mechanisms like buttons and lights. Around that time Joy began to feel that there was something different about him.  For example, she took him on a train journey and he became intensely distressed about a noise that Joy could not hear.  When he went to playgroup it became apparent that he had difficulties socialising, particularly because he wanted to apply fixed rules to the games being played. 

Joy and her husband were keen to get a diagnosis because they felt without one, their son would not be able to access appropriate support. He was diagnosed by a consultant child psychologist and by that point, Joy said she would have been surprised if he hadn’t been diagnosed because it was apparent that they were dealing with a “complex problem”. She describes feeling a mixture of relief and bereavement on receiving the diagnosis; relief because they would be able to access support and bereavement because she thought she had lost the child she thought she had. In retrospect, Joy feels that you never know what your children are going to be like.

She describes her son as kind, affectionate and hard working with a lot to say for himself. While he is aware he has autism, he does not tend to discuss it with her and Joy thinks that he is a lot less anxious now. He is making very good progress at school and loves to learn. He likes going on the internet, watching old comedy programmes, jokes and puns. He doesn’t like pop music, football or parties with a lot of people he doesn’t know. 

Joy describes how she doesn’t mind her son being autistic but the problem is that the rest of society is not very accepting. She hopes this will change as awareness about ASD’s increases. She has met a lot of interesting people through the experience and has learnt a lot about autism. 

 

Joy describes the first significant event on a train journey when her son became very distressed...

Joy describes the first significant event on a train journey when her son became very distressed...

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It was really from I would say… eighteen months to two that things were starting to happen that made you think there is something not quite right here but then you kept convincing yourself that maybe you were just being ridiculous, but the first really, really significant event was taking him on a train for a very short journey and him saying, complaining about this noise that I couldn’t hear and becoming very, very distressed and so distressed in fact that when we got off somebody came over to me and asked if he was all right and I was so worked up that I didn’t take him home on the train. I remember taking him home on the bus because I couldn’t face the same thing happening.
 
It was things like he became extremely distressed when you vacuumed. If he saw the vacuum he was upset. It was things like that and the fact that it couldn’t be a game, it really was, he really was upset. It was things like taking him into public loos and if anybody turned the hand drier on he went berserk because the noise must have hurt his ears, but you just don’t know what is the matter, you are distressed because they are distressed. So there was a lot of difficulty after that whenever I sort of wanted to go anywhere I would always be thinking would something like that happen.
 
You know when I think about it now, our lives became quite difficult. We had his hearing tested [laughs]. It seems bizarre now. I didn’t ever think there was anything wrong with it but that is all the health visitor could offer. Because I’m presenting this picture of this child that is giving behaviours like that but at the same time he was very precocious. He spoke not long, his first words not long after his first birthday and by the time he was eighteen months I have a list somewhere which has a vocabulary of sort of 75 or more words. Not small words either and he was very distinct in his speech. He didn’t ever, you might not have understand what he meant but you never could have said that his speech was indistinct, that you could hear the words you might not as I say understand what he meant, but there was none of the sort of pretend words that children often give to objects. They call something, something else, and he spoke in sentences, well in paragraphs really.
 
He read early and he taught himself. He was very nosy. He was a very nosy baby. He always wanted to look at mechanisms. He was fascinated by buttons and lights coming on and things. So a lot of, I think education professionals tended to pick on that first and then after they had had him in their class for a while it was obvious that he had social difficulties which I was becoming more aware of as well. From the time he was at play group, that he couldn’t let other children play because he wanted to be in charge of the game. And as well he wanted to apply things like rules of railways for instance had to be applied to the game. There wasn’t a flexibility. So whereas other children were moving on to play with each other, he didn’t do that. It wasn’t that he was disinterested I don’t think in being social, it was that he didn’t now how to do it. And so a lot of anxieties began to display themselves, especially when change and so forth had to happen.
 

Joy found the period after getting the diagnosis confusing and found it too painful to discuss...

Joy found the period after getting the diagnosis confusing and found it too painful to discuss...

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So he wasn’t diagnosed by the education psychologist. He was diagnosed by the consultant child psychologist who was dealing with emotional and behavioural difficulties. And once that was done although we had a label… I think that from that point for quite a while, I was in a sort of bereavement process because obviously I had lost perhaps what I thought I had and I wasn’t sure what you were going to get [laughs]. But at the same time when I reflect now that is the same with any child. When the child arrives you don’t know what you have. You know what you would like you know what you think you might have, but you don’t actually know until the character comes out.
 
Do you know I can’t remember [laughs] I can’t remember. I suppose they, must have done. I mean I have had lots of information over the years from different organisations and professionals. I can just remember being in the consulting room and her telling my husband and I and I can remember getting in the car and saying, “When we get back,” because my parents were looking after my son that day, so that we could go to that appointment and saying, “I am not going to tell them.” And I realised later the reason that I couldn’t go in the house and say they have said it is so and so, he is autistic, is because I couldn’t bear people to be sorry for me. It was just too painful.
 
It was … there are some people I still can’t, I choose not discuss it with them, because some people feel too sorry for you and it is just absolutely dreadful. Now I don’t need people to be sorry about it but whether I feel that because we have really had some measure of, I suppose you would call it success, in that our son is coping out in the real world and yes, he struggles, and there will be a lot more struggles in as much as anything because he is now 13 and he is, you know, finding his feet and he is trying to be independent. I would say saying that as a parent of a 13-year-old boy anyway. But no, I think I went out and found the information. But whether that was because I knew how to do that I can’t remember [laughs].
 
Can you remember what went through your mind when she told you the diagnosis?
 
No. Apart from really I think I would have been surprised if she said it wasn’t that. I think by then we knew enough to know there was something wrong, that we were dealing with a complex problem. And it all pointed to it being autism. No I can’t …I think it was probably an awful lot of things. In some ways relief, like I say because we had a label and when you have got a label you can start to ask for things whereas like I say I know that professionals are loath to give labels in case it is the wrong label. But… it does make life easier.
 
And I think I mean I know I was upset because I suppose you don’t want it to be whatever. I didn’t want him to be anything because I didn’t really know anything very much about autism except the classical stereotypes of somebody who just sits in the corner and can’t function and is completely withdrawn into their own world, because you know, I now know that that is at one end of spectrum. And my son is a lot more at the other end. But… I think it was just a mixture. But probably relief in one sense and distress I would say.
 

Joy describes how BBC Seven is her son’s “idea of heaven”.

Joy describes how BBC Seven is her son’s “idea of heaven”.

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And what would he do, like on a typical day at the weekend if he was here?

 

At the weekend… That’s he wouldn’t be like a normal teenager in that he would be hanging out with his mates, but he would probably read a lot, he would, if he can, get on the computer not to play games, but to look at different websites and stuff about trains and other things that he is obsessed with. He loves, he is very fond of comedy programmes, old fashioned comedy programmes, BBC Seven, is his idea of heaven. He loves comic songs, he loves monologues. At the moment he is trying to learn Noel Cowards ‘I have been to a marvellous party’ [laughs]. Stanley Holloway monologues, Albert and the Lion, he loves anything like that.
 
He loves jokes. He loves puns. And so he may well do that. He likes to have all comedy programmes videoed. He is very interested in a lot of things. Sometimes he will help his dad in the garden. Sometimes [um] if the weather is nice, he likes to go to the river which is just along our road and he gets in the water and he makes damns and things like that and gets very wet and very muddy. But no, he is not very socially confident and I would like, if I would like anything for him in the next year or two, it is to see him be more independent socially outside himself, i.e. sort of say I am going to go with so and so to the cinema or I am going to go, you know to the shops.
 
I think he is always bothered he might meet some not nice people from school. He never says that to me, but I sort of think that that’s, he probably has anxieties about that, that he wouldn’t know what to do and how to get out of a situation and it is all right at school because there are adults about. But no, that is what he would probably be doing.
 

Joy reflects on how she is glad her son “is autistic as long as the rest of the world can cope...

Joy reflects on how she is glad her son “is autistic as long as the rest of the world can cope...

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I suppose for me, it is like a lot of things there are some parts of it, that you think well I wouldn’t have been without this and I ask myself the question would I rather he wasn’t autistic at all, because some people actually are thrilled to be autistic. And I suppose the, it is not that I mind him being autistic, it is just the rest of the world because they’re not, they can’t see it, you know, they only see the negative bits of it.
 
So it’s... I couldn’t come out wholeheartedly and say I am glad he is autistic. I am glad he is autistic as long as the rest of the world can cope with it but it is when the rest of the world are difficult about it. I sort of think well, [pause] I keep coming back to this business of, if he hadn’t got any labels I would still be sitting here saying to somebody, “Oh you know what he has done now”, or “we are going through so and so”, because you know my friend would be sitting there as another mother saying well, yes, and [name] is doing this or you know [name] is doing so and so and I wish they weren’t and you know they were out too late. And had I put over this point about … So yes, it has, I can’t say it hasn’t had a profound effect. I would be lying to myself. And I suppose I don’t mind he is autistic, I just mind it is so difficult sometimes. It would be easier if it wasn’t.
 

Joy thinks that having a child on the autism spectrum now is easier than it would have been thirty years' ago; she hopes that in ten years time, things will be even easier.

Joy thinks that having a child on the autism spectrum now is easier than it would have been thirty years' ago; she hopes that in ten years time, things will be even easier.

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The positive things. I met a lot of interesting people. I’ve found out an awful lot. I don’t know as I really wanted to know as much about autism, but it hasn’t killed me to find out. I couldn’t say that it hasn’t been enriching at times. It has. And of course I can’t say that I wouldn’t feel just being a parent anyway as being enriching because it depends which day you ask me. If you asked me another day I would say I definitely, you know, I wish I hadn’t put my name down for this at all. And I have got at the end of it you know I have got a bright loving healthy child who, you know, when you look at what some people are dealing with terminally ill children, you know the fact that Nick could be profoundly affected in you know he could be incontinent, he could not have any speech like some autistic children, or have you know some other awful disease.
 
So you know, you, it is all relative. You know we have had a lot of help, we have had a lot of help and we have had a lot of support. And I think these days, certainly you know at times when you look in the papers and so forth, it is almost trendy to be autistic [laughs].
 
You almost feel that, somebody, you know, is quite keen to tell you that they have got autistic tendencies. So that has been I think a much more positive thing, because I think if this had been happening to me thirty years ago I think it must have been, very, very difficult. And if you were perhaps somebody who hadn’t had much education yourself and you were trying to take on dealing with this type of difficulty especially you know balancing it with dealing with society, who I get the impression that at the time the child would have been in a special school or a health professional would have been saying, “Take him home, you can’t do anything with him. What are you bothering for?” You know, to have dealt with that people must have been devastated and you know to have come through that because you do read about the people who did you know, take on the system for their child or whatever, that must have been, you must have had an awful lot of self belief, a terrific amount.
 
So I think you know for it to have happened to me and for it to have happened to me now, that has been a positive. And I think you know another five, ten years and I would like to think that we will have moved on again, because you know it is in the news all the time and I do think generally speaking that most people are sympathetic and prepared to be supportive.
 

Joy decided that her family would follow a ‘normal healthy eating pattern’.

Joy decided that her family would follow a ‘normal healthy eating pattern’.

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Did you try any sort of interventions? Like change his diet or anything like that?
 
I read one or two things about diet and along the way, and I didn’t ever do that. Principally because he didn’t have any, well as far as I was aware, he never complained of any abdominal or bowel problems or there was never any evidence of diarrhoea or constipation, the things that you read about that the people that have gone along the gluten casein free road. So I sort of thought well unless I see some evidence that he needs that I really don’t know whether I had the energy any way [laugh] to sort take on something like that because the more you read about it, it just looks like quite a difficult thing to do. I mean I did at one point think should I have his urine tested by [name] at Sunderland University and then I just, I thought no, I just don’t think, for him it will make a big difference, because like I say there wasn’t any real gastrointestinal difficulties that I knew about and also some people talking about when their children get from hyper, you know like people who, that when they are allergic to E numbers and stuff and I didn’t really, I don’t think, apart from the occasional sugar rush ever see much evidence of that. So I sort of read a little bit and then thought, no I don’t think that is for us.
 
I did when the work came out about the fish oils look at that a bit and I knew that I would never get him to swallow the medicine but when they became available in a chewy capsule I gave them to him for a while because he doesn’t eat that sort of fish anyway, but he wasn’t very keen and he kept telling me it wasn’t affecting his brain at all [laughs]. So we’ve just tried to follow a normal healthy eating pattern.
 

Joy says “you may be surprised at what your child can achieve.”

Joy says “you may be surprised at what your child can achieve.”

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Don’t give up. Don’t give up. Let your child develop at their own pace, take as much advice as you want. Be open. Don’t ever close your mind to anything. I’d also say be realistic as well. Be realistic. Sometimes you’ll be surprised what your child can achieve, I’ve been surprised. I didn’t know what to expect when we got the diagnosis seven years ago. I really didn’t know. It was very frightening but we’re still here and my child’s out there in mainstream school. Not everybody’s will be able to but, you know, don’t give up and remember to look after yourself because without you in the equation being fit and healthy, then you’ve got a lot less chance, so be kind, be very kind to yourself.
 

Joy talks about whether we are becoming too averse to risk in society.

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Joy talks about whether we are becoming too averse to risk in society.

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Well I certainly feel that there is a strong genetic component. That is speaking personally. You know you read about families where they say you know that they can’t find any evidence. I think there is not just one thing, I am convinced that there are a lot of things just come together and obviously you know maybe in the future you know when two people form a relationship you know you may be to sort of do some DNA testing and say well if you two have a baby you have got a high chance of having an autistic one. In the same way that they now can say you know your child is likely to have muscular dystrophy or whatever.
 
Like I say I am very convinced there is a genetic component but I am sure that there are other things, I mean, I wouldn’t like to give you any labels you know, but I am, I just don’t think there is one thing, there might be things that are more significant but I couldn’t say that I, I don’t dismiss anything, well I do, sort of somebody will come out and say so and so about autism and I think rubbish. But no, there’s genetics, there’s the environment, you know, maybe even the sort of diet we’re eating these days, who knows? I just want to see, like with any, I’m not going to call it a disease, condition, whatever, I just want to see people looking down microscopes and having well funded research to find out why.
 
On the other hand, I don’t know. Maybe its going to get that we can cross the t’s and dot the I’s and then life’s got to have an element of risk so maybe we’ll know too much and then we’ll have people saying ‘oh I can’t do this because this will happen if I do that.’ If when I met my husband somebody said to me ‘your child will be autistic’ would it have made any difference because I don’t know. I really don’t know.
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