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Oliver and Suzie - Interview 11b

Age at interview: 27
Age at diagnosis: 25
Brief Outline: Oliver was diagnosed with Asperger syndrome two years ago. His mother and younger brother had also been diagnosed with Asperger syndrome previously. Oliver describes his family as easy going and not concerned about what other people think about them.
Background: Oliver is a student and lives with his partner Suzie. Ethnic background/nationality: White British

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Oliver was diagnosed with Asperger syndrome two years ago and describes getting the diagnosis as ‘no big thing’. He wanted the diagnosis because he was about to return to university and he was worried that he might experience the difficulties he’d experienced at school. He describes his experiences growing up as frustrating; “like trying to shout when you don’t have a mouth”. His mother and younger brother had also been diagnosed which made him think about it.

Oliver is finding his university course easy in places though he struggles sometimes with knowing exactly what is expected of him. He has a support worker and various bits of equipment to help him with his work.
 
Suzie and Oliver live together and the couple describe how Oliver has learnt not to always steer the conversation round to him and to ask other people questions about themselves. Oliver describes how his family is more open and they aren’t concerned about what other people think about them which makes them a very easy going family.
 
Oliver has a part time job in a pub but thinks that people with AS can struggle getting employment because of the way in which employment opportunities and applications are structured with form filling as the first step.
 
 

Oliver and his parents were interviewed before the diagnosis was confirmed.

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A which point did you sort of think right I’ll go then and see if I can get diagnosed too?
 
It would have been late 2006, it took me a while to think about it, I wasn’t sure whether I actually wanted to do it or not. It started in 2007 but I didn’t finish the diagnosis then originally because... I can’t remember why, I think there was a little bit of messing around with appointments and so I kind of gave up on it. But I managed to actually get sort of finish the diagnosis in 2008.  So I was quite happy about that, that I’d finished it basically.
 
So what was the process they gave?
 
Go and see a clinical psychiatrist or a sort of psychologist, and they ask you a few questions about background, they speak to your parents together. Background of your childhood, things that you might not be able to remember. Then I spoke to a psychiatrist after that as well and the same thing, they just ask you the questions and obviously make the opinion on how you answer. Kind of fairly straightforward.
 
And what do they do when they tell you; do they just say yes you are? Or do they give you a piece of paper or…?
 
I had a piece of paper and I’ve got it somewhere. I did get a phone call to confirm it. They said that, you know, “The letter’s in the post.” Yes and that’s really it basically, yes.
 
It no big deal to you in a way, it seems like?
 
No. Not really because I mean I kind of always suspected it. But… Not really, never really sort… I wouldn’t say it changed my life, it defined me a little bit more, gave me a little more self awareness of me. And it’s made me a little bit happier. Obviously I’m more defined as a person, because of it. There’s a lot less chaos.
 
There’s less chaos?
 
Yes.
 
What because now you can make sense of it?
 
Yes. Because if there’s something there that if I don’t quite know I could research about. When there’s a ‘why do I do things like this and no one else does?’ I know why, what was causing it now, and I know how to research it and what, what to look for. And it’ll give me a little bit of peace of mind just through knowledge and education and stuff about it.
 
 

Oliver finds it frustrating that people with autism can fail filling in job applications when...

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I think it’s more that I’ve got a bit of charisma. And I think people pick up on this, but I seem, I do seem to fail, this is, because I’ve just recently got a new job, and because I’ve been handing out a few CVs out and things like this. I think that people with AS fail in normal human resource, hiring situations where it’s ‘please put your name here’ and it’s in a fairly basic form and people would, because the questions are obviously going to filter certain things out and I think this is where people on the spectrum or with AS fail. Because it’s not necessarily that they can’t do the job. It’s they don’t understand what’s been asked of them, because I’ve had this with quite a few situations. And it frustrates me greatly. Because I know I could do the job. A lot of the times I know I could do the job well, if not better than any one at the place. And it’s just the fact that they’re bureaucratic, very uptight attitude is basically putting them at a disadvantage. They could have some one better rather than just someone who’s just going to do the bare minimum and it doesn’t….

 

Oliver and Susie reflect on what life would be more like if more people were autistic.

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And I think for whatever reason, like obviously it’s because AS but just people like that, I think, are much more interesting and it’s better to be like that really than be really closed up and not being able to say what you think. 
 
Would you find life easier Olly if there were more people like your family?
 
Oliver' Oh yes. It would make socialising a lot easier. I think …
 
Susie' It would be much more interesting.
 
Oliver' Yes. I think, I honestly do think if there was more people with AS in the world it would be a better place. They’ll be a lot less shit going on generally and I really do, it would just be nicer, because people would be more considerate, they’d be less involved with themselves, you know, and I think there’d be it would be a lot fairer for me as well, be more like everyone else, and things would be geared up to …
 
Susie' If everyone was like your family then there’d be less pressure on other people to be a certain way and do you know what I mean. You could just act how you were, you wouldn’t have to be what people think you’re supposed to be like, you know, you wouldn’t have to act in a normal way just to fit in.
 
Oliver' The world would be a free place.
 
 

Susie thinks Oliver has a lot of friends but he finds defining friends difficult.

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Oliver' Well I do make friends but I find it very hard to make them, or define what is a friend?
 
Susie' I think you hide it quite well though. Like, you might feel that it’s difficult, but you don’t come across like that. So maybe you’ve just learnt to deal with it.
 
Oliver' I think I have.
 
Susie' Because I don’t think people notice at all. I think people find you quite friendly.
 
Oliver' Hm. I think it’s something I have learnt, and learnt to deal with being in social situation. I think it’s mainly from actually may be working in hotels and having to approach people on a day to day basis and be as friendly and outgoing as possible. I think this has helped me in a lot ways, on at least a conversive level, on a social level. I can talk about things, but it’s only just recently I’ve learned how to make conversation with people. Because I’d normally… if I was talking to someone, I’d normally try and steer the conversation around to something I wanted to talk about. And it normally would work, and if not I’d leave the conversation really. But it’s you, you keep saying why don’t I ask you questions and things like this and it’s realising that’s how people actually make conversation. 
 
Susie' Yes [laughs].

Oliver' By asking each other questions.
 
Susie' Yes, that’d the thing you’ve got to learn to do.
 
Oliver' Yes.
 
Susie' I’m not saying you need to learn to do it, but that’s something you just learn isn’t it?
 
Oliver' Yes. But I know realised why you had to do it before. I was… back onto friends, I have made, I guess you could consider them friends, made two or three at university. But I only normally see them at university. I don’t really socialise with them outside. Strange enough one of them had a childhood diagnosis of autism and the other one I think he’s probably a little bit in the middle. You wouldn’t consider he’s got… he just seems a bit, not quite normal. And [um] I think this is why we kind of mesh really. Because to see, to see us together, you wouldn’t think that we could actually be friends from… I know that sounds weird. Because they’ve very introverted, they’re very shy people, but we get along really well. We do have a lot to talk about with each other.
 
 

While Oliver now has support at university, he feels there are people who might need support who...

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And how’s that? How are you finding that? 
 
For the greater part I find it quite easy and I do understand the subjects, but for some assessments, i.e. writing and interpreting the question for an assignment I do struggle with. I found I do too much work, and it’s not specific to the question that’s being asked. I tend to go in depth but miss the point with the question. I’ve been told the work I’ve done on one assignment was a dissertation level work when I’m a first year at uni. They said, “Yes it’s good work. You’ve got a lot of your own research. But it’s not needed … just answer the question the way you see it.” But they say “just take the question literally, basically just do what it says on the sheet”.
 
Do you get support at the University now?
 
I do. I’ve been assigned a support worker, I’m on a support plan, which the support worker is part of, it’s part of the agreement that I get, I’ve just recently got my equipment funding. So I’ve got the software that can help me. I’m not sure exactly how it works. Basically I assume it interprets and sort of forms a middle man if you like, to help me re-write questions or re-word questions. I’ve got the new laptop, printer, stuff that… it’s not, not things to put me at an advantage, it’s to stop me from being at a disadvantage really. This is what they’ve told me the equipment’s for, the new stuff. And sorry, yes.
 
What does your support worker do?
 
Just support really. It’s, it’s everything from just talking absolutely nonsense to actually helping me write assignments. And if needed approach lecturers on, you know, things I might be struggling with. You know, to contribute, may be help me organise an assignment extension if I need it. Just support in general, just general support with my university worker, by being there, really. If I need, sort of extra help on ‘how do I do this?’ they do offer, you know, they do offer their phone number that you can, may be work from home and run a few questions by them and things like this.
 
So you feel you’ve got quite a lot of support on the course?
 
Now I do yes.
 
That wasn’t put in place at first?
 
Well it’s a two way street really, you’ve got to actually approach them to get it in place, because they’re not going to approach you automatically. I do think it should be made a little more, easier and more obvious on how to do it at university. Maybe a little more in the media, through posters, maybe something like that. I don’t know. But just… because I do think that [town] University. Because it had, like I’ve been told it’s very good for people with learning difficulties. Like people with dyslexic people, people on the spectrum and things like this. And now my support worker says she has about twelve students that have some form of, they’re on the spectrum in some way. And because it’s only, she said it’s only been very recently that she’s had a lot of people with Asperger's Syndrome and it’s only just become very, a little more well known. 
 
And this is the problem, there’s people there, that don’t know they’ve got it. And I think it’s been made aware that they might have it to get the support that they need, because if you don’t, it’s very hard. You can be struggling quite a lot and not realise why and this is…. I think this is what people
 

The members of Oliver's family who are on the autism spectrum are very easy going and don't worry...

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What do you think of having a brother and a mother who’s also on the spectrum and a sister who isn’t?
 
Well I, it’s kind of just, well to me it’s normal, because that’s the way really it’s always been and it’s like they’ve both said before it doesn’t change who you are. It is who you are that’s what, that’s your normal, that’s what you’re used to. And I, I enjoy it. I think we’re as a family, we’re a lot more free. There’s a lot more free thought within our little coven, I don’t know what you might call it, within our little family there’s a lot more free thought. There’s a lot more free speech. We are a lot open and I think because of that there’s a lot less stress, it’s a very easy going family. We’re not really concerned about what people think about us and how we come across as a family. ‘Are we going look bad to the neighbours?’ and things like this. Before, because mum and [brother’s name] were diagnosed and that did, it gave me a lot more motivation to get the diagnosis. But as far as [sister’s name] goes, I do feel as though she sometimes feels quite left out, because it has occasionally been a point of frustration for her. 
 
 

Oliver found feeling different was like trying to 'shout without having a mouth'.

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How would you describe the experience of that feeling different over the years since you were a child?
 
Frustrating.
 
Frustrating?
 
Yes and not knowing why. I mean it’s, I think it’s like trying to shout and not having a mouth. It’s not having vocal chords, it’s trying to scream and nothing comes out. So trying to talk in a vacuum, there’s nothing that actually passes your lips. There’s no sound. And I think it’s that, it’s that barrier that just makes you feel so alone and excluded, especially, I remember especially when we first moved to Australia I felt like a complete alien. Not only because I spoke differently but because I didn’t know how to make friends and how to actually get out there. And my Dad did put a lot of pressure on me to go and make friends. And I asked him. I remember asking him and saying, “How do I do it?” “Go and talk to them.” “Oh how do I talk to them?” “I don’t know. Go and talk to them.” And he, he’d say things like this, that just very closed comments that would leave no interpretation. I wouldn’t be able to actually take any information from it. And again this was a lot of frustration.

 

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