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Luke - Interview 35

Age at interview: 18
Age at diagnosis: 8
Brief Outline: Luke was diagnosed with Asperger syndrome when he was eight years old. He has written three books and is a keen photographer.
Background: Luke, aged 18, lives with his family and is currently unemployed.

More about me...

Luke, aged 18, lives with his mother and six brothers and sisters. Asperger syndrome was diagnosed when he was 8 years old. Luke did not like school. He always felt different at school and apart from a small group of friends, tended to be left alone by the other children. The teachers did not understand him and would often make him feel much worse. He left school early and is very involved in photography. He is now setting up an online business to sell his photographs and is thinking about beginning a career in hairdressing.
 
Luke has written three books; A User Guide to the GF/CF Diet for Autism; Asperger Syndrome and ADHD; Freaks, Geeks and Asperger Syndrome; and Crystalline Lifetime: Fragments of Asperger Syndrome.  He wrote the second book because he could find nothing written about the experiences of adolescents with Asperger syndrome. He has a girlfriend and enjoys going out to pubs, going to gigs, playing the guitar, singing and listening to music. He finds that his lack of ability to empathise with other people can be difficult, and his complete focus on things, like taking photographs affect his relationship with his girlfriend. They overcome this by talking things through and being very honest with each other.
 
Luke thinks it is important to read about Asperger syndrome and to learn ways of managing daily life. It can be challenging to go out and do things, like be in a crowd, but it’s important to try and overcome this because things do get easier with practice.

 

Luke describes the triad of impairments.

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AS [autistic spectrum], like I’m going to get scientific here but AS is split up into the Triad of Impairments which is communication, social interaction and theory of mind which used to be imagination but was changed because some AS kids are the most imaginative people you will ever meet so, yes, there is no lack of imagination there.
 
But theory of mind basically means that you know, you have difficulty seeing other people’s perspectives, seeing other people’s views and how they think. Social interactions is an obvious one, things like parties, you know big, like gatherings, and crowds as well, and communication is ... kind of ties into that a little bit. Communication is like problems with being too literal. Like people misunderstand us a bit, but say if someone says, like a phrase like, ah I can’t think of … yes, too many cooks spoil the, too many cooks spoil the broth and you know all these weird phases in the English language then if some say hasn’t heard them before then they can’t work out what they mean, or say if they have forgotten. But a lot of people misunderstand it, because you can still remember, so you might not know, you know might not understand what they mean, but you can still learn these different phrases and things. That is why I don’t really have trouble with that so much any more.
What because you learn them?
Yes, exactly. That is the thing. If you have a good memory then you can still learn some of these things and you know to not be so literal. It doesn’t mean that you can understand them, but yes, you can still take those in and then the next time someone says it say, then you will know what it means, so you will be able to understand that.
 
 

Luke never understood why children played things like cops and robbers.

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Yes. I have always have done. In primary school I think it started. It was when everyone was playing like cowboys and Indians and cops and robbers and things and I didn’t get it because all these people were pretending to be like a cowboy or a robber and I didn’t understand why. For obvious reasons, because they weren’t, they were just a bunch of school kids running around and you know all the way through like PE and stuff, I never got the point in kicking a piece of leather into a net and all these different things were really confusing. So I have always known that I was a little bit different, you know to some other people and apparently it is noticeable from the outside as well, but I never knew that much [laughs].
 

Luke likes music and going to gigs though coping with the crowds was a challenge at first.

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There is a few things. I like playing badly on guitar. I am a big music lover. I’ll go to gigs a lot. And – which is something I have done since I was about, I don’t know 12 or 13 I think. I think that mainly stems from AS though because I didn’t crowds and social situations and things. I would push myself to you know, to go to one and challenge yourself. So I went to my first gig when I was I think 12, and that was because I didn’t like, you know because didn’t like crowds and I didn’t like lots of people so… it was kind of a challenge but I really, I ended up really enjoying myself because it is a bit nerve wracking at first but I really like it.
And what sort of music do you like?
Rock, metal, new metal oldie stuff, I like Indie, I like a little bit of jazz, but in small amounts. I like some emo stuff but not very much, because it is getting a bit mainstream at the moment. I like a lot of things to be honest [laughs]. Just depends what I am listening to at the time. Like if you listen to just one genre of music then you won’t really get, you won’t really get anywhere. Because then you have only got that to listen to, so it is best to branch out a little bit and see if you can find bands you like, rather than music types.
And what other things do you like doing?
I am very narrow minded in that genre. I have the things I like doing which will be like a few things and then other than that I just get by. I am not too sure. Every day is different to be honest so I don’t really have one thing which I continue all the way through, but I like singing, that is something like I have always liked. I am not the best singer but yes. I still enjoy it, so. You shouldn’t stop something if you enjoy it.
 

Luke describes how he and his girlfriend work at their relationship.

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Difficult, especially at the moment. I have been I have been going out with a girl for a year and three months now, and whenever we have an argument or something it is always to do with that because even though there are good points, like you can focus, you know you focus on things a lot better, things that you enjoy, like more than a normal person would, like a normal person, like somebody else would have a few things they like and they do a little bit of this and little bit of that. But way I could spend a full, you know, like fourteen hours taking a photo and then spend another six hours or so taking a photo and then eight hours getting it right on photoshop. So I think that is a plus side, like you can look at any people, you know any of like the greats in history, like Beethoven, Albert Einstein, Bill Gates and you can see there is obviously plus sides to it.

If you have any sort of fallings out it tends to be because you can be quite focused on something?

 Yes.

 And not see her point of view may be. I mean do you manage to sort that out between you?

 Yes. We just talk like, we talk a lot, because you have to when you have to be completely honest, like all the time otherwise it’s hard enough to understand at the moment, but like if we didn’t tell each other and stuff and like help sort it out then we wouldn’t have a chance really because there is so many things that just look like you were being selfish or just look like you are not communicating properly, that you really do have to work at it because it does get in the way of relationships. It does. But it is not impossible, but it is definitely something that you have to work at.

 

Luke describes how things get easier and “you find ways to help yourself”.

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Not particularly, just things get easier, you know, as you become more accustomed to it. So say, rather than going into town, and going to a different bar every week then you could go to say the same bar, like, you know, every time you go out for a little bit and then you become more accustomed to that and more accustomed to the surroundings and who goes in there and then you would be more comfortable there. And then you could say move onto somewhere else. And if you know, things start getting a bit difficult you just like count to ten, and like just stay and talk, you know, talk to the people that you know. Luckily like in town there’s only about five places to go but yes, so it is not altogether too difficult. But yes, you just find ways to help yourself to be honest after a while.
 

Luke thinks after “the first baby steps” he found his own ways and strategies and has now stopped...

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Do you read about Asperger's?

 

Not really any more because there is no point after a while, you know, when you first, when you first find out that you have got it, like when I first found out when I was about twelvish then obviously you read about it to understand things more. But after you have been through all the symptoms and like read through all the strategies to help yourself then, you know there is only so much you can read or you need to read because you still, sorry you are still you, so you know, there is not really any need to read anything more because you just, you tend to like find ways, you know, find ways and strategies to help yourself when you first find out you have got it and then it is helpful. But after that, that is like the first baby steps and after that then you kind of find ways to help yourself so you don’t really need to read any more.
 

Luke talks about the things that could have helped him at school.

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What could the teachers have done? What do you think, looking back, what would have helped you in school?

 

Not being so bloody awkward. [laughs] Things like, say my little brother’s in school at the moment. He is ADHD and like, to help him concentrate he likes to like you know mess with something, I don’t know, like a piece of string or a pen or something like that. And you know, if it is something like a piece of string or a piece of elastic then he won’t be disrupting anyone, but the teachers take it off him anyway, because you know it is not normal. I swear some of the teachers are the most AS people that I know, it is all so, so inflexible. You know everyone has to be the same and do the same and if you change that then they throw a little hissy fit. So I think just be a bit more, like if the teachers were a bit more accommodating that would have helped a lot.
 
I think my art teacher, every time I went out to speak to like my friends or something he would phone up, he would phone up mum and say, “Oh well, Luke is outside speaking.” Like you know, “He is speaking to someone.” And mum would just go, “So?” And he would go, “Ah, he is cured.” And he just really didn’t get it. But just things like, you know, if someone say needs to have the homework written on the board and say for it to be wrote at the start, sorry not the start of the lesson, but say ten minutes before the lesson finishes rather than five minutes when the bell has just gone because he needs to concentrate on that, you know, to be able to do things like that without being so inflexible all the time, that would have helped a lot. Hm.
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