Nuala - Interview 56
Age at interview: 43
Brief Outline: Nuala's son, Robert, was diagnosed with Asperger syndrome when he was eight years old. He attends a mainstream primary school with support and is now much happier and settled.
Background: Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
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Nuala and her husband have two children, a daughter aged 11 and a son aged 9. Nuala didn’t think there was anything particularly wrong until her son started school and he hated it. The school thought that he was badly behaved and Nuala noticed that Robert was not developing in a similar way to his sister. He needed much more attention and help with things, had huge temper tantrums and couldn’t sleep on his own.
When he was seven years old, she took him to the GP who referred him to a paediatrician. The paediatrician suggested that he may have Asperger syndrome and referred Robert for assessment. The assessment process lasted a few hours and Nuala and her husband had to think back through Robert’s earlier development to answer very detailed questions. He was diagnosed with Asperger syndrome which has led to a change in the way he is treated at school and he is now much happier and settled.
Nuala feels that the assessment process was useful because it reminded her of things and she thinks that she always had a feeling in the back of her mind that there was something different about him. She was surprised to get the diagnosis because there were aspects of his behaviour which did not fit the criteria and she describes feeling terrible for six months or so afterwards.
Robert still has tantrums which tend to be around feeling that things are not fair, perhaps in games with other children, or because there has been a change in routine. Nuala has a wallplan detailing the week’s activities and she describes how “we simply don’t change the plan”. She describes Robert as “lovely, bright as a button and incredibly engaging”. He is “odd” but entertaining and loves history, museums and zoos.
For Nuala, the hardest thing is the way other people react to Robert and thinking about the responses he might meet in the future. However, she feels very positive about his future and thinks that with the right partner - who will need to be very patient - he will have a good life.
Nuala found the three hour interview illuminating - it pointed to things that were different about her son.
Nuala found the three hour interview illuminating - it pointed to things that were different about her son.
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The main thing was a big interview which my husband and I had to go to, and it was about three hours I think. Very detailed. I mean we had to, it was quite hard because we had to think back to when he was three or four and we had to study, we had to think about tiny details of his interaction and spend a long time answering questions about how he spoke to people or how he looked at things or what he didn’t look at or how he got attention, whether he pointed at things, that kind of thing, very, very detailed. And of course, you know, we were four or five years after that.
We had to think about his period of time shortly before he went to school. And they warned us about, that it would focus on that period of time. So we spent quite a lot of time before the interview, looking at any records, letters, emails, videos we had taken. We had videos. I had some notes that his nursery had made and just reading through those we were reminding each other. “Do you remember when he did this?” [laughs] Just trying to remember and capture what it was like when he was that age, and then, we didn’t know what the questions would be. So when we had the questions, I think there were quite a lot of them. “I don’t know. Do you remember him doing that?” [laughs] “Did he do that?” “Oh I can’t remember.” So lots of discussion between us but it was quite, I think the diagnosis process was quite interesting actually, the assessment because actually it did bring to my mind the things that actually were different about him, and I suppose there had been in the back of my mind, a feeling that there was something subtly different about him at that age, and in fact in some ways the interview really brought that to my attention.
It made me think about what it was that was different. And the fact that he didn’t point at things for example, was something that I had never specifically picked out. But then actually it was something that he hadn’t done, he hadn’t referred to things, like drawing attention with a finger. So it was, it was kind of a strange experience, but it was actually quite illuminating and it helped me actually come to terms with the idea that the assessment was quite a good guide, because it made it, it did relate to our own experience of living through, of bringing him up through that period so it was quite useful.
Nuala thinks games of 'tag' and 'it' are lethal if you have Asperger syndrome.
Nuala thinks games of 'tag' and 'it' are lethal if you have Asperger syndrome.
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He’s… very likely to… nowadays, typically because for example, he will be wound up by the children in the playground often not deliberately. It is sometimes because he doesn’t understand what they are doing. So perhaps they will be playing a game and then they change the rules. Games of ‘It’ and ’Tag’ are really lethal [laugh] if you have Asperger's; suddenly all the children will decide that they are going to play ‘Star Wars’ instead and he can’t understand what they are doing at all and he can’t understand why they don’t want to play the game they were playing before and he can get very upset. He is much better at handling that but if it is combined with children, perhaps teasing him, or perhaps sometimes, deliberately winding him up occasionally, he can’t handle that very well, and he will simply sit on it for half an hour and then explode. So it can be very destructive.
In the past he would blow up very, very quickly at quite small incidents. So he would misinterpret something that somebody said, or he disliked being teased when he was younger because he didn’t understand it. He thought they were deliberately getting at him and he would explode very quickly. He is much better now. A lot more has to happen.
The other thing that will typically bother him now, will be issues around fairness; feeling that he has missed out on something. There was an incident recently, where he, because he has a lot of difficulty planning and organising, he missed out on a gold sticker at school for behaviour because he failed to take his homework diary into school at the right time, and really that is because he can’t plan very well over a week, there is not a chance. He is only nine and he couldn’t do that. He took it in a day too early and then didn’t take it on the right day and so he didn’t get the sticker and he was absolutely bereft, really, really upset because he felt, I think, so excluded, it was just something that he could not possibly attain and he was so aware of the differences between himself and other children I think and it is that kind of where he feels it was an unfairness he will get very, very upset and if he is a bit tired and maybe a bit, you know, he has had a lot of homework or something, sometimes that kind of thing will really touch off a tantrum very quickly.
Nuala describes how they have elaborate plans for everything and "simply don't change the plan".
Nuala describes how they have elaborate plans for everything and "simply don't change the plan".
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It does mean that you can’t, you have to think ahead very hard if you want to do something. The other thing that will set tantrums off which I forgot, is the changes, sudden changes of routine. I had forgotten because we just don’t do it. We have very elaborate plans for everything and we have a big wall chart saying what is going to happen in the week and we simply don’t change the plan.
When he was younger and we suddenly decided that we would like to do something, and go out for the day that is when a tantrum would happen, because we would change the plan and he was very upset. So… really we don’t, we don’t change the plan, I mean it is that simple. We just don’t. It doesn’t matter if somebody in the house suddenly wants to do something. We have to stick to what was agreed, and if there is something, you know we have to go out or something or there is something he doesn’t like, like a babysitter coming, which is a big negative, he does need a lot of preparation and now with a lot of preparation and support he can get through a bad experience.
When he was younger, he couldn’t but now he can, actually get ready but you can’t spring it on him, you can’t say, “Well tonight mummy and daddy are going to leave you with a babysitter.” That won’t work, that would definitely be a bad thing. So a lot of it is avoidance and preparation and then just a judicial amount of avoiding and helping and distracting at the right moments.
Nuala describes the circus and theatre as an "absolute hate" for her son.
Nuala describes the circus and theatre as an "absolute hate" for her son.
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What sort of things doesn’t he like doing?
Oh all things sporty [laughs]. Well actually he quite likes things like football, but I think he wishes, I think that he could play football on his own with nobody else [laughs]. Football is great fun, but why do there have to be other people kicking the ball too? It is not fair [laughs]. And they never give him long enough with the ball so a normal eleven a side match he just hates [laughs]. So he does do football and other team sports but he doesn’t really like them at all. He strongly dislikes things like circuses and theatres, and things where things go dark. Not a big fan. It is not worth it. We don’t get enough enjoyment out of it for that. He really dislikes that kind of experience and will get out of the auditorium, given half a chance. An absolute hate.
What about the cinema?
The cinema is okay, because I think it is worth it and as long as you go in after the... as long you make sure you are there, and sat down, before the lights go down or after the picture has started, he will enjoy it, because he is enjoying the picture. I mean it is worth it for the film as far as he is concerned but it has got to be something that really engages his attention, but he will put up with the darkness for that.
Nuala and her husband have got into the habit of socialising separately and only manage to go out together on special occasions.
Nuala and her husband have got into the habit of socialising separately and only manage to go out together on special occasions.
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Yes, oh yes. We didn’t go out for, when he was very young it was okay, and then now he is able to handle it, but there was a big gap in between when he couldn’t handle it and babysitters didn’t thank us for going away and leaving him. He also went through a spell when we used to try local teenagers baby sitting for the first time and we would just go perhaps to a neighbour's house, he tried the trick of always finding some way of hurting himself so they had to come and fetch us [laughs] and it was very ingenious. But… he definitely had a big problem and we have actually tried to make it a rule that we do go out, now perhaps every month or six weeks to give that reminder, so that he is reminded what it is like, because I think one of the problems is, if you stop having babysitters for a long time as we did is that the children then lose the recollection that it was all right and that they did have a baby sitter and it was fine.
So we now try and keep the practice going, but it does have a big effect, you just can’t socialise together. And we have got into the habit now of doing it separately because we have to. There is no other way of having a normal life really so we tend to find that we socialise a lot separately and then as a special occasion both of us do something together, which is lovely. And very, very occasionally we actually go out together which is really nice [laughs] but very rare.
Nuala feels her daughter misses out because her son needs so much attention after school to recover from the stress of his day.
Nuala feels her daughter misses out because her son needs so much attention after school to recover from the stress of his day.
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What sort of effect has it had on his sibling?
It is quite a big drain. It is, it is annoying for her, because she’s, I know that sometimes she doesn’t get as much attention as she perhaps should. And there will be moments when, I mean she is growing into teenage, and sometimes she needs her mum. And when he was a little bit younger, not very long ago, he wouldn’t leave my side when he was at home, and that meant she could never have a private chat. We never had a conversation together where there wasn’t a small boy deciding to put his pennys worth in. We didn’t just have a comfortable chat without him. Now we can have more time alone, but he is still not going to let her have a lot of attention, without wanting to be there. I think that is still a big need for him.
He is very stressed at school and when he comes home he needs a lot more attention and relaxing time probably than most children, and that does rather push out any other siblings. There is also the annoying... if she had friends around then sometimes it will go badly wrong, because sometimes he will take against them or be a problem. She gets frustrated because sometimes we can’t go to places, because we haven’t planned the length of time that we need and we can’t just suddenly all get up and go. As she gets older, that is a bit more frustrating at the moment for her because she is still fairly dependent on us. But I am hoping as she gets older still she will see that she can go out on her own for example. She is not so dependent in the end.
I mean he is not as dependent as he was. So I think it is a little easier but it is an impact. And of course there is also a psychological impact of knowing that your brother had a label, which I think took her quite a long time to get used to it.
Nuala thinks her son's life is not going to be the easiest life but it could be quite a good life with luck.
Nuala thinks her son's life is not going to be the easiest life but it could be quite a good life with luck.
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This is a difficult question that we have touched on but how do you view the future?
[Laughs] That is not that difficult, quite positively on the whole. I think I am quite, I am quite confident now that he can get something out of his schooling, probably, and I am quite confident that if he can learn to tackle his social difficulties then he might be fairly successful. I do think he will have to have a terribly patient partner if he has one [laughs]. And I know he wants one. I know he would like to have children. He said that to me, and I suspect that is probably quite an aspiration. So I think there is a good chance he will have that. But I think he or she will have to be terribly patient, so I hope that the future is fairly good, but I think I worry about specific things, like, conflicts with people getting out of hand, or specific problems and slightly more general problems about not being able to get work perhaps or falling into the trap of depression I think is the biggest worry, I think, in the back of my mind is the thing that there are a lot of frustrations in life ahead for him. It is not going to be the easiest life but I think it could be quite a good life with luck.
Nuala's 'round table discussion' was useful to exchange medical and education information effectively.
Nuala's 'round table discussion' was useful to exchange medical and education information effectively.
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We did have a round table discussion that I proposed and I got the school and some of their support networks, there is a specialist teaching support wing in the County Council. We got our paediatrician and myself and my husband all together in the one room in school and we talked about him for an hour from all the different perspectives. And I thought that was really helpful. Everybody was very pleased. They said they had never seen anything like it. They had never spoken to each other before [laughs]. It was quite remarkable. And I felt that was really useful, because before that we didn’t have any other way of transferring medical information except by us taking, going to the paediatrician and talking to her and getting information and then taking it to the school ourselves and occasionally we would get her to write a letter if there was something specific. And ditto there was no practical way of connecting educational information and feeding back.