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Tim and Julie - Interview 09b

Age at interview: 39
Age at diagnosis: 39
Brief Outline: Tim was diagnosed with autism eight years after a paediatrician suggested that there was a family link between himself and his son. Tim has a very supportive wife and they have two sons who also have autism.
Background: Tim is married and had two children. He works as an IT consultant. Ethnic background/nationality: White British

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Tim discovered he had autism when the paediatrician who diagnosed his son, suggested that there was a “family link” between him and his son. This was a shock to both Tim and Julie but they waited several years before Tim sought a diagnosis for himself. 

Tim describes how he always felt there was something different about him but he didn’t know what it was. Tim and Julie met at secondary school and she describes how he was always the “quiet, intelligent one”. Tim went through school without difficulty but when he went to university, he struggled and ended up leaving at the end of the second year. He had a couple of jobs before getting into IT and has been successful in work since. Tim can find the social side of work very tiring and enjoys working by himself.
 
Julie describes how Tim can be difficult to live with. He has special interests which he finds very absorbing. His main interest is exercise and he will run around 20 miles every day. He also has difficulties with communication and Julie has learnt to tell him that he is having “an autistic moment” to alert him to the unreasonableness of his behaviour. Julie breaks tasks down for Tim to let him know exactly what he should do and she also describes compensating for Tim’s behaviour when they are out.
 
After eight years Tim asked the GP for a diagnosis as he finds life more difficult as he grows older. Tim and Julie have two sons with autism and their complicated family life has led to the couple having family therapy.
 
 
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Julie found it 'useful to know' that her husband was autistic so she could change her...

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I think it were useful for me to know that it weren’t your fault, if you like. Because at times I used to go ‘why is he like that?’ And you know, he had this idea that maybe if I put a bit of pressure on him I might be able to change him a bit you know, but no, that clearly, clearly was never going to happen. And I think to know that you’ve just got to work with what’s there and you know… because we’ve had our difficult times haven’t we? There’ve been times when we’ve nearly thrown the towel in to be honest, but we’ve, we’ve sort of kept going haven’t we? And I think it’s just reaching a level of acceptance in us lives where this is how it is and you make the best of it. Whereas I spent many years, sort of fighting trying to change things, and make us lives different, but you know, this is what we’ve got and this is what it is, and it’s not that bad, if you just sort of find that level of acceptance and get on with it really.

 
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Julie lets Tim know she is joking by saying 'joke alert'.

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Julie' And I find that with Tim as well, sometimes I might pull his leg about something and he’ll look at me as if I’ve just like really insulted him or something you know. So, but we’ve got now that we can laugh about it, I just say, you know, “Hello, joke alert.” [laughs] And then he’ll smile and he’ll laugh.
 
Tim' I think it is often, trying to, you know, cope with that. I mean what I’ve sometimes said to Julie is if she does realise that I’m just going off into an autistic moment, is just to hold her hand up and say, “Look autistic moment.”
 
Julie' “Go and calm down.” [laughs].
 
Tim' It’s often, I think if Julie can do that, it’s often a lot easier, because if she stands and argues a point, I just keep on arguing back. If she can just say, “Look you’re being autistic, you know, go and calm down for two minutes”, and then we’ll continue discussing, you know, to discuss it, but that can happen.
 
Julie' Yes. I just, to sort of stop you in your tracks.
 
 
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Tim is not able to concentrate on driving and holding a conversation, and has some difficulties...

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Julie' It’s like when we go out in car, I have to drive, because if the kids are talking Tim can only cope with one thing at a time. If he’s driving then he’s driving. You know, he finds it difficult holding conversations with the radio on and background… You see I can have radio on, be talking to Tim in the back, kids next to me, driving. You know, I’m not stressed about it at all. But that would be an absolutely recipe for disaster for you wouldn’t it? So then he gets snappy and nasty and he shouts at the kids and they get upset and...
 
Tim' I can. I can cope for example with driving and holding a conversation with you. What I can’t cope with is trying to hold a conversation with you and having the stereo going at the same time. And it’s the same effect. I can cope with driving say with Jack in the car. Okay he’s rabbiting on at you, but I can’t cope with…
 
Julie' But sometimes as well we  find it difficult even when there’s just me and Tim in car, I always drive because he’s,   he’s got this strange idea of   sort of spatial awareness as well haven’t you.  He’ll think people are pulling out on him on roundabouts when they’re probably not and things like that. And that, I’ve got, my car if I’ve used the horn on my car twice in all the time I’ve had it it’s stretching it. Tim will use it two or three times on a daily basis. And I just think it comes across as quite an arrogant sort of driving. And
 
Tim' I do sometimes worry that things like the sensory side is getting a little bit worse. So like Julie says I can’t cope with going to Asda supermarket. It’s, you walk in, and like she said the immediate look, just as if startled rabbit. It’s because from a sensory perspective all I can hear is background noise and it literally swamps everything out. So the best way to describe it, is if you are sat next to TV playing white noise that’s all that you can hear, you’ve got somebody trying to hold a conversation with you and all you can hear is white noise from the TV.
 
 
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Julie and her sons have adapted their lives to include Tim's obsession with exercise or he can...

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Julie' Tim can be difficult to live with sometimes. And I’ve got two children as well, with autism as well. It can be quite hard at times. I think problem is Tim and Jack are very like and it’s sometimes I’m in the middle, you know, trying to smooth things over, because Jack takes things very, very literally, and because Tim’s people skills, may be aren’t the absolute best. He’ll say something which Jack’ll misinterpret it and then before we know it we’ve got major problems, and then Simon don’t understand what’s happening. So he’ll then get upset and so I spend a lot of my time, just sort of mediating really. And Tim can be very withdrawn and in his little world a lot of the time, you know, and he’s got quite sort of narrow, quite obsessive interests really that he’s completely self absorbed in most of the time. Yes, you know you are [laughs]. Exercise being one of them. He’s absolutely fanatical about exercise. He has to have exercise every day, otherwise he can get quite, you know, quite anxious and quite nasty at times. But I don’t just mean a jog round block, you know, I mean runs, runs 20 odd miles a day. Cycle, he might, it’s nothing to cycle 70 mile on a Sunday morning before I’ve even got out of bed [laughs]. Is it Tim?
 
Tim' It’s probably ___ a bit high, but yeah.
 
Julie' Hm. So he’s obsession is with his exercise. And we, he don’t realise it, and he’ll deny it but we have to adjust our lives and adapt our lives to accommodate his exercise, otherwise…
 
Julie' I do try and work round it.
 
Julie' You do. You do try, but just little things, I don’t think you realise sometimes just how much we do accommodate you and how much we have to adapt. So yes, so he’s very, very self absorbed in his interests aren’t you? Yes. 
 
 
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Routines work for Tim 90% of the time.

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Sequencing can be a difficulty I think it is for most people with autism. I must admit that for myself. You tend to get into the habit of having a routine which can be difficult, because if anything happens to then disrupt the routine it can fool it. But if you do get into that routine it is trying to get yourself out the door in the morning. And it’s like you know right I’ve got this to do, this to do, this to do and what I’ll often find is that if I need to do something like picking up a laptop for example, that’s the thing that will get forgotten. The rest of the routine may have gone right but it’s like you know I needed to pick that laptop up this morning. Not done it, because it was outside the routine. It works 90% of the time. It’s only if you get anything that would be a little bit different that I do find…

 
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Julie is better able to let Tim do what he wants to do, now they have the diagnosis.

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Julie' I think it were useful for me to know that it weren’t your fault, if you like. Because at times I used to go ‘why is he like that?’ And you know, he had this idea that maybe if I put a bit of pressure on him I might be able to change him a bit you know, but no, that clearly, clearly was never going to happen. And I think to know that you’ve just got to work with what’s there and you know… because we’ve had our difficult times haven’t we, there’ve been times when we’ve nearly thrown the towel in to be honest, but we’ve, we’ve sort of kept going haven’t we. And I think it’s just reaching a level of acceptance in us lives where this is how it is and you make the best of it. Whereas I spent many years, sort of fighting trying to change things, and make us lives different, but you know, this is what we’ve got and this is what it is, and it’s not that bad, if you just sort of find that level of acceptance and get on with it really.
 
You know, I think knowing sometimes that yes, when he’s getting a face on because he hasn’t been able to go out and run twenty miles is probably him being awkward to a degree but maybe there’s more than that, and it helps me accept it a little bit and at one time I’d have been, you know, he’s been out every night this week, can’t you just come and sit with me for one night, you know, I am important as well. And we’d have had them sort of arguments, but now I know it’s just not worth it. Just let him go, just let him go and have his run and do what he wants to do. And that’s how we get by now. I just had to let go. So I think it’s done me good really to know that. The only think is, it can be irritating at times because they’re all good at it, and they know how to use it to their advantage. You know, though don’t you, you know you do. If there’s a situation you don’t want to face, you know you’ve a card out of it, whereas before you probably wouldn’t have had.
 
 
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Julie has to mediate misunderstandings that occur between her husband and two sons.

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Julie' Tim can be difficult to live with sometimes. And I’ve got two children as well, with autism as well. It can be quite hard at times. I think problem is Tim and John are very like and it’s sometimes I’m in the middle, you know, trying to smooth things over, because John takes things very, very literally, and because Tim’s people skills, maybe aren’t the absolute best. He’ll say something which John will misinterpret and then before we know it we’ve got major problems, and then Martin don’t understand what’s happening. So he’ll then get upset and so I spend a lot of my time, just sort of mediating really.
 
And with work I think he does really well in his work, but working in sort of IT field again, he can get his head down and he can sit and communicate with a PC all day and limited communication with people as much as possible [laughs]. He can communicate with people can’t you?
 
Tim' Oh yes. I have to do it in work.
 
Julie' He does go into meetings and he has to do.
 
Tim' I do have to go into meetings and I have to talk to customers so…
 
Julie' Yes, but you come home and sometimes you’re quite exhausted by it aren’t you? If you’ve had a day where you’ve had to interact a lot you can see that it really does take it out of him. But you’re happiest when you are just left to do your own thing aren’t you?
 
Tim' I do sometimes worry that I don’t manage the tone of voice and I am speaking very well either.
 
Julie' Yes, quite often he’ll shout me, and it’ll be “Julie come and has some tea.” This is what he really means, but it’ll be “Jules!” You know, and I think oh my goodness the house is on fire or something, you know, it’s hard to sometimes he can’t pitch it at the right, you know, to convey the right message can you?
 
Tim' No. 
 
Julie' And quite often he’ll shout kids and they’ll come running down stairs thinking that they’re in trouble you know, and it’ll be just oh you know.
 
Tim' Tea’s ready.
 
Julie' Tea’s ready [laughs]. But to be honest we’ve come to a point now, haven’t we, I’ve spent a long time sort of working with Tim, we can change him, you know, but you can’t, you can’t, you just have to work with it. And find ways of adapting to accommodate these things.
 
 
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Julie has to give Tim very specific instructions about cleaning the house so he knows exactly...

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Tim' So for example if you say to me, “Right I want the bathroom cleaning.” It’s easy for me to walk into the bathroom and say right I can start at this and work my way through it and I know exactly what I can do. If you say to me something very vague, there’s too much, there’s too much… and it can be difficult to think am I getting this right compared to what you want.
 
Julie' Right, have a bit of a tidy round.
 
Tim' Yes. It’s too vague.
 
Julie' How much is a bit and how much is …
 
Tim' Because a bit to me might be totally different to what you’re expecting and you might walk in and not be very happy with the results. So it’s not that I couldn’t try and work out what my version of have a tidy around is it just might not match your version [both laugh]. And because of that you want to get it right so you ask the question.
 
 
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Tim and Julie discuss the ways in which Tim was different when he was at school.

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When you say that when you were growing up you always thought there was something different about you. Can you explain a bit more about what that was?
 
Tim' It’s difficult. I mean, without wanting to sound too arrogant, my usual problem, I was pretty much top of the class all the way through juniors and into comprehensive. So I realised I was fairly intelligent. 
 
Julie' That’s without any effort as well. You know, because I was at school with Tim and I was above average shall we say, but I had to fight achieve everything whereas he’d do his homework over breakfast, on his way up to school and get top marks you know, just one of them people that you hated [laugh]. Because I’d been at mine for weeks and I’d get an average mark [laugh].
 
Tim' I managed to work out I were fairly intelligent… and I was very, I think diffident is probably the best way to describe it. Maybe because of that you realise that you know, you’re intelligent, you feel that you stood off from people a bit, and they just felt there had to be that, that distance. And it was difficult for me to, to read people. So people might have been having a joke and I could be, you know, a bit snappish. Like Julie says, there was no understanding that it might be a joke.
 
Julie' Or the other way they could be taking the mickey and you wouldn’t realise either?
 
Tim' So you could have someone being a bit unpleasant and not realise it. And because of that there’s always that, that distance. It’s difficult to break through it. And even as a child I would avoid social situations. So things like parties or group events. I’d be more inclined to avoid them, and again never really realised why. But, it was difficult to get past that… it was difficult to get into that social interaction. I could cope with a small group of friends quite easily and that works very well. But as soon as you started talking about into a more social situation it really was very, very difficult really. And I think I realised there was that distance and I that was finding it really difficult to break through to people. And I don’t know really.

 

 
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Julie's family don't understand Tim. Tim's family, while understanding, refuse to discuss autism.

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Julie' Yes. But I think from a family point of view that’s been difficult as well hasn’t it. My family don’t always know how to take him. He very much will speak what he’s thinking at the time. And not always, because he can’t read other people’s thoughts and other people’s feelings, sometimes he might say the wrong thing, which other people that don’t know him can take offence at and I think you’re quite aware of that aren’t you, which makes you uncomfortable in situations. So he’ll avoid like family parties and family holidays or anything like that.
 
You know, if my mum rings up and says, “Oh we’re all going out for a meal on Saturday.” Straight away I think, oh no, you know, because I know he’ll either not want to go or he’ll be anxious until, until it’s over.
 
Tim' We do have a bit of history there you know with me having upset your lot more don’t we.
 
Julie' Yes, there’s been a few rifts. My family think that Tim thinks they’re stupid. Tim is very intelligent, but again, because he talks about, he talks at quite an intellectual level if you like, and I think sometimes he doesn’t always realise. He don’t bring that down to, to the level that other people needs sometimes, and he can come across a bit, sometimes a little bit arrogant can’t it? And people don’t always know how to take that.
 
I think with my mum and dad, they know that there’s a problem and they accept that there’s a problem. And they’ll say all the right things, but then they’re happy just to let me get on with it. They don’t really want to be that involved. Me mum’ll have the kids to help me out on the odd occasion, but she’ll only have one at a time. She can’t with them both at the same time. And you know, I’ll go to her and say that, “I’m having a bad time mum.” You know, when will it be about me for a while, and I just sometimes don’t understand, think they understanding just how hard it is. Straight away, she’ll say, “Oh I know life’s hard in’it. I’ve got to the hospital next week.” You know, and sometimes you don’t feel like you get that … they’ll say the right things, but I think they’re really in tune with it. And they don’t have awful lot directly to do with kids do they?
 
But sometimes feel that our family they do judge us a bit don’t they? Whereas your mum and dad to some extent are quite the opposite. They’ll do anything for us on a practical level. They’ll have the kids, they’ll do whatever. Anything we ask them, never too much trouble. But at the same time, the, autism word is very taboo, you know. If Jack mentions his Asperger's at Nana, it’s “shut up. We don’t talk about things like this. It’s not nice.” And they’re very much, they wouldn’t accept. 
 
I think because they had Jack, Tim as a child, to them it’s normal. They’ve never known any different.
 
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