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Russell - Interview 07b

Age at interview: 21
Age at diagnosis: 12
Brief Outline: Russell was diagnosed with Asperger syndrome when he was 12 years old. His awareness of potential difficulties is increasing as he grows older and more aware. Russell describes himself as being prone to outbursts and is taking anti-depressants.
Background: He has a degree in accountancy and is looking to get an apprenticeship in business administration. Ethnic background/nationality: White/British

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Russell was diagnosed with Asperger syndrome aged 12 after he met a child psychologist in a waiting room for a diabetes appointment. He feels that in some ways being diagnosed as a child meant that he didn’t have to try to do certain things, and it also meant that some people could understand him better.
 
Russell describes how difficult he has found it to fit in with his peer group. The interests that they have around football and music, do not interest him and people tend not to be interested in the things that he is, e.g. abstract maths. Sensory issues like bright lighting or noises can be distracting for Russell and he describes how he worries about things that are outside of his control and there is always the potential for spontaneous incidents when he goes out. His awareness of potential difficulties is increasing as he grows older and more aware. These worries can be reduced by staying at home and playing video games. He also has a system for checking that everything has been locked and is secure when he goes out of the house.
 
Russell has joined a support group that has social events regularly. While he doesn’t always enjoy the events, Russell describes the balancing act he does between wanting to cut himself off from the rest of the world while still maintaining some friendships. Since getting his degree in accountancy, Russell has had a temporary contract and is hoping to get an apprenticeship in business administration. He feels he is at a disadvantage in trying to get a job because of the focus of interviews on one to one interaction. 
 
Russell describes himself as being prone to outbursts and is taking anti-depressants. He lives with his parents after spending a year house sharing which didn’t go well. Russell would like support to help him live independently. He would also like to have a relationship but says that meeting a woman with AS is unlikely. 
 
 

Russell thinks the diagnosis has 'created a block on his normal behaviour' but also explains some...

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In that sense I suppose it made it slightly easier but slightly, slightly more difficult in the way that, you know, you cannot go into these situations I was talking about before, and you kind of go in and say, instead of thinking right here we go, let’s do it, and then coming out, oh well we’ll try next time. You go in and say, “I can’t do this. I suffer from a social disorder. I just can’t do this.” So that, it kind of creates a block on your normal behaviour, but on the plus side it, what for the more informed people it does explain some of my more peculiar tendencies.
 
I mean go into a work place, and then, people, if I tell them who I am, and what I’ve got, then they are able to compensate around it and talk things through with me. So I wouldn’t necessarily call it a label I’d call it more a wallet card. You know, nobody can walk down the street and notice that I have Asperger's. But I can tell them. That’s... but then the key varies knowing just who to tell. Yes.
 
 

Russell calculates the 'worst case scenario' when he goes out and worries he's forgotten to do...

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Yes, it’s, I suppose that comes down to being too aware of the surroundings. Whatever’s happening it will catch my attention. There’s no may about it. It will. So sometimes when things get too much I kind of go off into, into a quiet corner where I’m in control of everything. When I’m in control of everything then I feel fine, it makes me feel less anxious, you know, I could go away, go away and play some video games, I know the ins and out of the rules and regulations of all that. I sit down and I can immerse myself in such activities for hours upon hours, with little or no regard to what’s going on in the rest of the world. I mean the world could just pass me by, not literally, I mean all the world doesn’t pass me by, but you know, what I mean. But you know, it’s, that is kind of a, that’s well that’s a safety net I suppose. If I kind of reside in there, then there will be nothing that can harm me, nothing that can, you know, make me anxious or worried or angry.

 

You know, if something goes wrong in the real world, then the best thing you can do is damage limitation and that’s quite difficult, because I’m not very well known for reacting superbly under pressure. And damage limitation would be acting under pressure and everything I do, needs to have some kind of thought behind it. And, when it comes to just pure, you know, split second intuition, then, that’s stumps me. That does stump me.

 

Is it always a worry you think about or is it maybe thinking about computer gaming?

I think it’s a mix between the two. You know, if my, because I might have accidentally, I might have thought that I’ve accidentally forgot to lock up the house. Then that’ll tick over in my mind. But then if like you said there was computer game or there was an event coming up or something else to that effect, then that would go through my mind as well. I mean even, even a song, just played on continuous loop goes through my head regardless of where I am. I suppose with that, it’s something that I know that would be some kind of safety point to it.

I mean you go into all these unfamiliar environments. You don’t know what’s going to happen. There might be some kind of punch up or, people getting insanely drunk and collapsing and all these different things which can kind of raise the pressure of the situation. And, you know, I suppose having that pre-emptive process going through your head, it takes your mind off that point in time. It takes you to something to which you can look forward or something which you may have forgotten or you might end up chuckling at something. I suppose the worry one would be separate from that one, because it would, everybody would worry. I mean if they thought they’ve forgot to lock their house. Some people kind of think about it for a moment, forget about it, put it to the back of their minds, other people kind of obsess over it. Other people kind of obsess over it. Some people obsess too much and I kind of fall into one of the latter two categories.

 

 

 

 

Russell scared his university flat mates at times because of his anger outbursts.

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And that was your experience at university. Was it positive?
 
It was quite good, yes, I’m quite sure it was a bit high pressure. You know, the lectures were fairly high pressure, I couldn’t keep up with the poor writing speed. And you know, everybody would go out and be social, but I couldn’t do that really. And in the final year I was living with housemates. And at points I actually scared them, so I went to see the doctor about that and got put on antidepressants and hey ho I was on the way back to being a happy chappy human being.
 
In what way did you scare them?
 
Bursts of anger, use of quite a lot of expletives and just general hiding from social situations. I mean if they were in the midst of doing something, I’d get out the… I mean if they were sitting down in their front room watching the television, I’d be upstairs fiddling about on the computer, because it just didn’t interest me, being around... because they were completely different. I was a male, accounting and finance student and all three of them were female English students, second year. So we were, we were on completely different levels, which was pretty much doomed from the start.
 
 

Russell finds lighting distracting.

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Again I suppose what would be noticed by camera is that I’ve turned down the lights in here because they were quite blinding when I came in bright lights are quite, quite distracting, quite distracting. I mean it’s a beautiful summer’s day outside and the light is very off putting. I was coming in and the light was, I had to try and look away from the light but look where I’m going. So that was, that was interesting. Also, I can’t keep, keep myself from hearing the noise upstairs. But it’s just playing about in my ears, and that’s becoming quite distracting as well. 

 

Russell tries to avoid obsessing about things that could go wrong when he is away from home.

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Have you found any ways of managing your obsessing about things?
 
Make sure I don’t do anything wrong. That’s all I can do. I make sure I check everything is secure, everything that may go wrong is made so it won’t go wrong, you know, to the extent of everything apart from the, the very unexpected, I’d say earthquakes or tidal waves, something like that. You can’t, you can’t really plan for that kind of situation if you don’t know it’s coming. So I can’t really plan for that. But you just remember to lock up your house, keep your keys on you, make sure they’re tied to your belt, make sure you’ve got everything you need, wallet, mobile phone, keys, in my case insulin pen. If you remember those then the one thing that may happen when you’re out is you may have a kind of a skip in your memory, you know, because you know, did I forget to lock the house? And if you just go back a little in your memory, search through it again. Confirm that you did lock the house, then it takes your mind off of that and you can get back to being annoyed by everybody else. So like, I suppose that’s a, I suppose when you’re going out, if you’ve got an obsessed thought going through your head and you can’t get rid of it, you can’t control it, but you can control being in the social situation, you kind of step outside it, and you go back to the feeling of being left out of the, you know, general social warmth. So, yes…
 
You seem to be quite concerned about coming to harm?
 
Well, it’s, it’s not so much physical harm. It’s, unexpected psychological impact I guess. You know, something unfamiliar happens, something to which you’re not used to understanding, you know, going out and being approached by a some guy who ended up drinking twelve cans of Carling in a row, and then he’s going out swigging drunk that kind of thing. Very, very disturbing. It just, I just can’t handle those situations. I, I’ll normally I kind of walk around them, but even then you don’t know what’s going to happen. The guy may come chasing after you. Or he may just carry on his merry way, keeping a drink, and carry on walking. It goes so many ways, and you’ve got so many situations that can happen. I mean you could have a car which nearly runs you down. You could have somebody kick a football at your head. Or you know, somebody accidentally trod on your toes. All these different things happen. They have been known to happen. And you can’t plan for them all in your head. I mean your standard person would be able to, you know, keep calm and collected but have that sternness about them in order to… kind of make sure that it doesn’t happen again. If you chucked someone like myself into that situation then we probably fly off the handle or sit down and hide from anything happening like that again. But there are hundreds of not thousands of those types of situations. Which is a bit of a nightmare, but again it comes down to avoidance, knowing where you are and knowing what you’re doing.
 
 

Russell's interest in abstract maths 'isn't seen as socially normal'.

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So that’s quite, it’s quite annoying and distressing sometimes. It’s quite depressing really not being able to fit in where everybody else fits in, because everybody really kind of builds themselves some kind of you know, their close knit community type thing, they, they travel in crowds or packs, and being around that many people is, it’s difficult because people tend to go off and gather into their own groups, according to what they do some like football, watching football on the telly, some like crazy house music and when I’ve, when I see all these difficult groups, there isn’t a group into which I fall because I’ve got interests which are different from everybody else’s. So, very, what some people would say unique interests but I’d say more, not so much unique but different from what would seen as the social norm. 
 
I mean I don’t think an interest in abstract maths would be seen as being very socially normal. You go out to these places have a good time, not to talk about differential equations and all these different things you can find, calculating approximately how big the universe is or something like that. 
 
Well I suppose the thing’s with friends is, having people who are interested in the item in which you’re interested. That would be very rare. Because I’ve got, you know, several interests and trying to match them all up with at least two or three people is very, very rare. I mean matching it up with one is not that common, but matching it up with two, three, maybe four. Just a simple close knit friendship is very rare. It’s not that easy.
 

Russell would prefer a cure for his depression rather than daily medication.

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And you used to rely on antidepressants?
 
Yes.
 
How do you feel about that?
 
Mixed emotions I think. I suppose it’s good because I’m a little more under control, although I wouldn’t say under enough control, because there are still points where I’m prone to outbursts and anger and bitterness and you know, being miserable. But I suppose that happens to a lot of people today. So it kind of reduces that, but I’d rather some more permanent, a more permanent solution was found. You know, if I could find some kind of cure which makes it stop dead in its tracks, then that would be fantastic rather than having to go through the morning ritual that I must take my pill. My antidepressant pill every morning otherwise that day I’m going to feel absolutely awful. So that’s, that’s kind of a down, a down point on it. If I, if I do forget then a lot of people will notice. People will notice, particularly in my family. They’re quite receptive to my mood changes.
 
 

Russell would like specific answers to the questions he has about domestic chores, such as what...

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Would you like somebody to live with you or would you like somebody to come in and…?
 
Well not live, not live with me no. But, you know, come in from time to time, you know, just ask, just ask questions. Because that’s, if you’ve got answers from questions that you wanted to ask, that’s what you need. If you end up with answers to questions about which you really couldn’t care less then that’s going to just confuse you more. You know, how do I get this stain off the hob? Why does it matter? You know that kind of thing. I mean if it was how do I get a stain off the hob? Use a scouring pad, this, that and the other, bleach cleaning fluid whatever. Those kind of things are useful. But the, it doesn’t matter approach is not the way to go. It isn’t the way we go.
 
Who would say to you it doesn’t matter?
 
Anybody who doesn’t really understand how difficult such tasks would be, because they’re more capable. They don’t see it from my perspective. It’s a completely different perspective and if you try it with someone who’s never ever been there. Never really understood the difficulties that come with relatively minor tasks then they’re not going to be sympathetic. They’re just, you know, I’m sure you can figure it out yourself. 
 
 

Russell recalls some of his experiences of living away from home and the support he would like in...

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And, would you see yourself staying there for the long term future or …?
 
I hope not, because my parents are absolutely fantastic and the one thing I wanted to do, is you know, let them be, live their lives. But again it’s one of these Catch 22s, because independent, independent living, I’ve given it a try for a year, and, almost everything that could have gone wrong did. I mean lessons were learnt but there are so many lessons that haven’t. So that’s more going to be a crash course than anything.
 
What sort of things went wrong?
 
Let’s see. I managed to set the cooker on fire. Annoy two of my house mates who happened to be vegetarians. I managed to annoy two of my housemates who happened needle phobic, which is a problem when you’re a diabetic, and, pretty much insulted all three of them without realising it. I managed to damage a lot of my body on items which are kind of based around the kitchen. I mean door frames. Big problem, [laughs] and for some reason I end up hitting the door frames a lot. But not realising where my limbs are, some [38.35 ?? pre-preception]. So I did that a lot. I still do, but hopefully not as much. One time I was defrosting meat and I put it out in the back yard and seagulls came for it, which annoyed one of my house mates who then blamed the cold that she got on me, which was annoying because she was coming up to do the [town name] half marathon. That’s pretty much just a couple of examples of what exactly went wrong.
 
And so again coming back to… you want to move out and leave your parents, is there some sort of support that could help you live independently?
 
To my knowledge, not anymore, because the general consensus of government health agencies is that, autism doesn’t matter when you turn 18. Once you turn 18 the support stops dead. If you’re a child with autism that’s fine. 15, 16, 17 you’re okay. You can, your parents can get you support. Once you turn18 you are considered adult enough to go out and do it on your own. Not adult, not considered adult enough to be given support. So like you can do it indep… well pretty much independently except for the support. They just stop the support and tell you, “Do it yourself.” That as you can probably tell, tell in my voice is very annoying. It’s very, very annoying.
 
What sort of support would you like? Would help you to live an independent life?
 
Well the first and foremost would be help for getting employment, because it’s pretty much, well it’s noted, I mean even the government are admitting that, I mean 15, I think it’s 15% of autistic adults are able to go into any sort of employment at all, and most of that is normally part time. So, financial security is top of the list. Second of all, would probably be, you know, be able to look after myself prop… you know, have cooked meals without blowing up the kitchen or how to hoover up without smashing your nice shiny new glass table. Those kind of, those, those small things make a big difference. But as I said, there’s nothing for it.
 
Would you like somebody to live with you or would you like somebody to come in and…?
 
Well not live, not live with me no. But, you know, come in from time to time, you know, just ask, just ask questions. Because that’s, if you’ve got answers from questions that you wanted to ask, that’s what you need. If you end up with answers to questions about which you really couldn’t care less then that’s going to just confuse you more. You know, how do I get
 

Developing an interview technique is something Russell finds difficult.

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Is there any support that you’d like? 
 
Well, a bit difficult that one really, because the standard, the standard points of improvement for any application and interview technique would be covering letter, CV, interview technique. CV, covering letter, are absolutely fine. The interview technique is the difficult point and it’s again it’s one of these points where again I suppose the sufferers don’t do well at all because it’s face to face conversation with someone who is scrutinising your every word, every action. And when you’re suffering from Asperger's Syndrome you don’t have control over all of it. You, you may get quite twitchy and fiddly in your answers. Because if you’re concentrating on what you’re saying, then your body movements are not focused upon full control. If you focus on your body movements then you’re not focusing on what you’re speaking. That’s mainly where the problem is. I suppose it’s not so much training specifically for interview purposes but training just for talking, just for expressive talking. That’s, that’s going to be the main problem.
 
 

Russell mimics people from books so avoids reading them. He doesn't feel the NAS represents...

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Okay, what about reading about Asperger's Syndrome or autism. Are you interested in reading about it?
 
I’ve tried, but then my mum pointed me out to, my, my peculiar tendency to mimic what people are saying. Because as I said before it’s unique for each and every person, so, if I mimicked someone else from a book then I end up changing my whole behaviour and that’s kind of throws off everybody else. So I’ve kind of steered away from the literature, certain things because it ends up putting ideas into my head. 
 
Is there anything, any website or anything that you’ve been on that you’d recommend to other people as particularly interesting or helpful?
 
No. The reason being is to understand autism alone, it requires, it requires first of all that I can understand it, so that other people can understand it. And even if you get up to the big names like the National Autistic Society that is not autism friendly, a lot of people, a lot of autistic people in my group have said, it’s not autistic friendly. I’ve read through it and it’s unpalatable, you can’t make head or tail of it. And, in my mind, I wouldn’t want to wish it on anybody else. Other people might be able to handle it. I don’t know. I’m quite possibly thinking from experience but it doesn’t represent us as we would like to represent us.
 
 

For Russell socialising is like 'going into a battle of tongues unarmed' though he would like a...

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Have you had relationships in the past? Do you want relationships?
 
Never in my life had I had a relationship. I would like very much to have one.
 
Do you anticipate having one?
 
No. The reason being is I’m looking for someone who understands and accepts me for who I am. And the only way it’s going to happen is if by some fluke chance I manage to meet an Asperger's suffering female. And the chances of that are somewhat reduced by the fact that autism hits boys and girls by a ratio of 4 to 1. So that’s, that knocks it down for a start. Secondly, you have to actually go and socialise in order to kind of make any impact. That stops, that stops me dead quite a lot of the time, and thirdly you’ve got to, you’ve got to think on your feet. Any of the questions that are given to you, you must expect. I mean they could be, you know, your bog standard of, you know, where are you from? What do you do? Age? That kind of thing, up to more bizarre things, you know, they go off into their… they go off into what they like to do, their hobbies or interests. And for the normal person who doesn’t suffer from Asperger's Syndrome they can, they can blag it. They can kind of talk their way through it. For Asperger's sufferers there is no blagging. You go, you in there, you go unarmed in a battle of tongues. If you don’t know something then you just draw a blank. That’s all there is to it.
 
 

Russell finds that the effort to control what he is saying can result in the loss of control of...

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So I suppose that leads onto another thing where conversation topics are very difficult. Yes, that’s they are pretty difficult because I tend to kind of focus on, a lot of different things, but only one thing at a time. If my minds on something else then it’ll try and escape from wherever I am or what I’m doing at the moment, at that moment in time. But other people tend to be just in for the moment. They tend to just, you know, sit back, relax, catch up, drink a few brews and I can’t do that. 
 
I just sit back there, and the moment something pops into my head that some, you know, did I forget to do this? Did I forget to do that? Then I do nothing but worry and try and calculate what would happen, the kind of the worst case scenario if I didn’t go and resolve that problem, post haste. So that part is quite difficult. 

 

 

Russell has become more cautious as he has grown up and feels more wary of possible dangerous...

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No. No. The older you get, the wiser you get, the more cautious you get. You become more aware. I mean if you’re a young child with autism, then you’re pretty much led everywhere. I wouldn’t, I wouldn’t compare it to a dog on a leash because that would just be comparing autistic children to dogs, which is not right, but you’re kind of taken everywhere and you don’t question it. You don’t question, you know, mummy why are we going in this store? What do you need to do here? Do you need some x? But the adult’s autistic mind grows more wary of the dangers that all these standard every day items, that need to be sorted can bring. I mean if you could go into your standard corner shop and get yourself a pint of milk, and all of a sudden somebody holds up the stock… the shop. I mean normally that doesn’t happen in anywhere but America because the government laws but you know, even if you walk into a normal shop, though most people don’t have that thought going through my head. Sometimes it does go into, into my head, that somebody’s about to hold up the store, you know, just going in for a pint of milk is quite… makes me a little bit anxious because what could happen is unknown. 

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