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Sam - Interview 17b

Age at interview: 26
Age at diagnosis: 24
Brief Outline: Sam was diagnosed with Asperger syndrome two years ago. He is studying for a PhD and lives by himself.
Background: Sam is studying for a PhD. Ethnic background/nationality: White British

More about me...

Sam describes how it took him a long time to understand what it is like to be autistic and feels he has been influenced by what he has read on the topic. The main issue for Sam is his overly obsessive focus on particular things which “consume his thoughts” and make it difficult for him to do other things that he should, perhaps, do. He has always felt a “massive inseparable barrier” between himself and other people
 
He was diagnosed three years ago after experiencing mental health problems for a few years. While Sam finds most other people uninteresting, he also does not like to spend periods of time by himself as he begins to feel like he is “surrounded by a bubble of numbness”. Sam describes a constant tension between “functioning and having a normal life” and wanting to spend all his time alone in his room.
 
He enjoyed university, after a difficult time at school, and found that it was easier to be a loner in that environment. After getting his degree, he went downhill rapidly and got a diagnosis after reading about autism and realising that the criteria applied to him. Sam does not celebrate being autistic and feels very strongly that it has ruined his life. He is concerned that autistic people who celebrate the autistic culture are naïve and not engaging with the emotional, social and financial cost of autism spectrum disorders. 
 
Sam describes living in chaos and finds organising his life very, very difficult. He is starting a PhD having finished his Masters and is feeling cautiously optimistic about the future. 
 
 

Being autistic has ruined Sam's life and he can think of little positive about it.

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Although suffice to say this is probably, you may not like what I’m going to say here, but suffice it to say, it would artificial insemination as far as my genes, i.e. autistic ones are not going into the mixing pot when it comes to that sort of thing. Which I appreciate it isn’t particularly pro autism but I’m not pro autism. I don’t want to ever see any autistic people being trod upon, it happens, but when it comes to sort of autistic rights and all that sort of thing I can’t accept that quite simply because I can’t see anything good about aut… well there are very few good things about autism; it’s ruined my life, and I never want to be autistic, and if I had a choice to not be autistic I would never… I would simply take it. And I do see a lot of other people out there, I mean I spend a lot of time with the internet and I do see a lot of autistic advocacy, and I’m not convinced quite simply, because you know, on one page of a forum they’re going on about how it’s great to be autistic and how you know, more people should be autistic and all that sort of thing. And then another forum, another part of the same forum, they go on about a list of their problems; how they’ve got depression, and you know, antidepressants and all sorts of personal issues and I’m thinking to myself, well wait a minute, these problems you’re having, probably wouldn’t, you wouldn’t actually be having if you weren’t autistic, so it doesn’t make sense to me. I just can’t say anything. I really can’t say that much positive, particularly positive things about autism. It’s ruined my life as far as I can tell; it’s ruined a lot of lives of people I’ve met who have been autistic.

 

Sam's obsessional thoughts are all consuming and he is unable to concentrate on anything else.

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But, the key elements of autism to my mind, is that when you, when a normal person focuses on something and thinks about something they can often get quite interested in it. And often it’s something they’re actually not that interested in at all. If they just, they may be something very annoyed or angry about, an emotion, and it feels quite strong. But after a while they can just switch it off and have opted break from an emotion and do something else, they can usually do it reasonably well.
 
Whereas, certainly in my experience that’s the precise that autism really can’t do. That when I get interested in something it very much remains interested in me, I’m interested in it. And if I want to do something else it quite simply it remains with me, or remains consuming my thoughts. And although I can sort of, think about something else, at the back of my mind it’s always going to be burning away. And it’s very difficult to concentrate on something else. 
 
And this could be true for any number of things. Like, I’m thinking in relation to employment. It’s very difficult for me to focus on anything beyond those menial, menial tasks, if my mind’s thinking about some other particular thing which is consuming me. 
 
It can be something to do with social interaction, insofar as, it’s difficult to really focus on the conversation to a degree when you’ve got this particular you know, some sort of thought consuming me so strongly. 
 
And so in this regard to my mind it’s very difficult to actually really care so much about other things and other people. I suppose it’s the old stereotype; autistic people are very self-centred. Well they can be to a degree, because not so much, because I don’t really care about anything else, but whether they’re interested, not necessarily themselves, but whatever particular thing that consumes obsesses them. It is, it gets in the way of just simply living a normal life of, of caring about things that other people do, and I’m guessing, this thing is much more speculative, but I suppose we have the sight we have because people are just formed that way. But if someone’s slightly different from that, then they’re going to form a slightly different way. 
 

Sam finds a lot of people 'banal' but found having a friend at university made a 'massive...

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However, I did meet one friend at university who is probably my best friend. I’ve known her for seven years now. And that really made a massive difference, because I hadn’t had one person I could actually talk to. Who I could sit there for an hour or two or longer and have a one to one conversation with, for many years. And quite simply the benefit that that brings is worth more than having twenty or thirty friends who you can socialise with and spend time with but actually can’t really talk to as such, just be in social environments with. And so that was probably, probably the reason I enjoyed university, was because I actually managed to meet someone who actually I could connect with and be friends with. So …

 

Sam used to hide in his room from housemates and would only consider living with postgraduates in...

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If I’ve got a friend I’ve got a lot of enthusiasm for them, and I like to spend time with them, and everyone else I’m just really, whatever. So I just usually if I actually talk to anybody in the house I always talk to one person and everyone answers just purely getting away quite simply. I don’t know I’m not very good with people. So it’s infinitely easier living on my own. Not having to hide in my room while getting hungrier and hungrier as they’re in the kitchen, no one shouting or slamming doors or whatever, at whatever time in the morning. I wouldn’t mind… I possibly… if I did live with anyone else again it would be with postgraduates I think, when I’m at university. Because they are usually much more mature and intelligent and interesting and they them to sleep before say 2 in the morning which is much more convenient for me. And they don’t shout so much. They’re not usually racist either

 

Sam wasn't convinced by the suggested diagnosis of schizoid type personality disorder and so did...

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In relation to diagnosis, I’d actually been diagnosed many years earlier as… well it was only a suggested diagnosis of schizoid type personality disorder. And when I saw this, I remember, getting it at the time, and the psychiatrist really wasn’t very nice about it to be honest, he sort of, his exact words were, “This will end of a lot for you” which was a rather cheerful way to introduce someone to this.
 
But I went home and read about it, and I just wasn’t convinced. It just didn’t strike me as a) particularly good signs, and b) suitable for myself. But when I actually saw autism and saw some of the characteristics of it, it’s just so, it’s just applicable, it just worked. You know, things, things which I’d never understood about myself and been trying to understand for many years as to why I was different, trying to explain about all sorts of various theories and I appreciate that none of them were really working and then suddenly I just saw ‘autism’ and thought ‘oh wait a minute’, you know, the problems in my head quite simply that’s, that’s where it’s all come about. Although I very much enthusiastically embraced it; indeed I got the diagnosis in about six months, and I remember deciding that even if they said I wasn’t autistic, I decided that I definitely was, because it just fit so much there was no particular issue, and they definitely diagnosed me.
 
 

Sam 'hated school' and around the age of 15 his ability to cope declined 'pretty quickly'.

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I think my ability to hold together conversations, seemed to plummet at this point, I don’t really know why. It became much more complicated for me. That’s quite speculative, but suffice to say the level of pressure I felt being in a conversation increased substantially perhaps, I suppose children accept abnormality much better when they’re younger, but when you get to sort of say the age of 15, people are starting to develop individuality and you know, a lot of changes going on and that perhaps demarcated me. And for whatever reason it just became very difficult for me to talk to people, to the point whereby I’d often get these really very, very bad headaches in school. I would just sit there and as soon as the class started, I’d just get this really bad headache and couldn’t concentrate.

 

Sam feels he is 'psychologically incapable' of doing a job that he isn't obsessively interested in.

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I mean, the notion of the life, a lot of people have lived, or of getting a, you know, leaving school, getting a job, working, whatever, they just… people to my mind seem so very, very easy to satisfy. Whereas an autistic person in my experience will often very much more difficult to satisfy, insofar as we can go over and just get any particular job, whereas it’s difficult for me to imagine myself working any but the most specific of jobs, because I just simply don’t care about most of them. And yeah, most of people aren’t very enthusiastic about working whatever job they’re going to work, but they’ll do it, it’s not particularly that big a concern. Whereas, it’s to the point whereby I probably couldn’t do it, I’d be psychologically incapable. Because I just couldn’t focus upon it, and the sheer, the level of will power it’ll take to get up and go to it. I think it would be so much more, because it’s just I’d have to be...out whatever thing I’m particularly interested or obsessed with at any given point. Hm.

 

Sam talks about the support he has had that hasn't helped him.

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I’ve been to two autism organisations so far, both of them have offered me one to one support i.e. I spend however long, potentially ten hours a day to two hours a day or whatever, with one person which I can do pretty much what I want to do in that particular time. And also I have attended classes… they weren’t classes, inter… workshops. One we were building a mosaic, I built a mosaic which is not actually in this house currently or I would show it to you. And there was one we were setting up a charity shop, which I didn’t play particularly much role in. I came rather late, but we were organising, we were able to get a business to give for members of this organisation work experience. And so we tried to set up a charity shop, we did actually recently open, and it was very successful here. 
 
But the one to one support is what I’d like to talk about. In the first organisation I went to, they advertised it as being, I can use this time to do whatever I wanted to do which sounded great for me. Because I’ve had a lot of counselling and I’ve found that I can spend a lot of time talking and during that hour or whatever, I can maybe establish a lot things about myself and what I should be doing with my life, and how to change it. But then for the rest of the entire week I’m just focussing back on my obsessive thoughts and taking no practical action whatsoever, anyway coming back a week later to counselling and just talking about the same thing. So the idea of the autism thing is that it’s much more practical, I can do what I want with it. And so… and trying to sort out my life, trying to get things in order, my life’s quite of a mess. It’s all … There’s no organisation, it’s all chaos, what I’m doing in my life, and my attempt to try and sort out my mental health problems and really very minimal, I do almost nothing in relation to it because it’s so overwhelming, and just so much easier just to sit in my… just simply think about whatever’s consuming my mind, which is never this particular thing. So practical things is what I really needed help with.
 
Unfortunately, the first autism organisation I went to did not have the same notion of practicality as I did. Their entire notion was to give me something to do during the day. And their notion of what I should be doing was things like go to the park for example, was one thing we did. Going to a nearby town for example to walk around and have a look at it, going for a walk somewhere. All things like this, practical things like this, which quite simply I didn’t want to do, and I had no particular interest in doing whatsoever. And yet, this is what they very much insisted on to a point whereby they actually ended support for me, even though it took over a… about fifteen months to set up, I was actually seeing them for about two and a half months once per week before they completely cut support. And I just couldn’t understand why, why they thought I should want to go to, you know, the park and walk around it, is not my notion of sorting out my life. 
 
And I’ve found since then that perhaps a lot of autistic people to my mind are really quite immature, which is fair enough, I’ve got no problem with that, but in that regard I could see, well it’s not as if… immaturity is perhaps… a lot of them are, but then again a lot of them aren’t, and would still be interested in doing this sort of thing, but not for me.
 
Quite simply it’s almost the point is that a lot of autistic people don’t have any sort of life, and so they are trying to give them some sort of life, that this organisation was trying to do. But what they failed to do… I know some of them are very immature
 

Sam recalls an 'emotional distance' between himself and other children.

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When it comes to my past, I can’t really remember what happened before the age of say ten years old. I assumed I had reasonably normal functioning life. But when I was ten years old I moved school and this seemed to have a fairly negative effect because I didn’t make new friends, at least of the friends I did make eventually I felt weren’t really interested in me at all to be honest. They just seemed, I don’t know, very distant. I suppose there was a feeling of distance, of emotionally me and them. I’m not totally certain why this was. It wasn’t particularly easy, school, in fact I hated school. It was a lot of stress. I just… I certainly worked hard at it and I certainly made a lot of effort towards it, but I dreaded going most days. I really did. I thankfully wasn’t bullied which was probably a very, I’d say lucky. I was slightly bullied on my paper round, but not actually in school, so it wasn’t so bad. But the big change, the big change came when I was about 15. My ability to cope for some reason, just simply declined pretty quickly. I think it was the level of stress I was under at school, quite simply. 

 

Sam enjoyed the academic focus at university and also met his best friend who he was able to...

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I guess I quite enjoyed being at university because it allowed me to focus the academic quite simply which I enjoy. I enjoyed doing that; it allowed me to read about things I enjoyed reading about. And to a degree talk to people on similar topics that I actually cared about. But ultimately I didn’t really get along with that many people there, they just really tolerated me. I suppose I am quite an arrogant, well I am actually, I’m an arrogant person. Whether I got justification for that I don’t know, but suffice it to say I didn’t find my classmates to be that particularly interested in what they were studying and couldn’t really talk about it to the same level which I could. And they were happy with that, but that sort of made me look down on them, which perhaps was wrong of me, but suffice to say it then meant once again the distance occurred.
 
However, I did meet one friend at university who is probably my best friend. I’ve known her for seven years now. And that really made a massive difference, because I hadn’t had one person I could actually talk to. Who I could sit there for an hour or two or longer and have a one to one conversation with, for many years. And quite simply the benefit that that brings is worth more than having twenty or thirty friends who you can socialise with and spend time with but actually can’t really talk to as such, just be in social environments with. And so that was probably, probably the reason I enjoyed university, was because I actually managed to meet someone who actually I could connect with and be friends with. So …
 
It was certainly much easier than school. People at university seemed to be much more open-minded as much as people at school eventually, were originally fine as children; willing to accept abnormality, then they sort of stopped when they became teenagers; learning to accept it so much. Once you get to university they seemed more willing to accept it once again. Which was certainly nice, but I guess they had a life full of things, and even if they had time for me, they didn’t. When you are in school you very much have to talk to your classmates, you’ve got to be around them. Whereas if someone didn’t like me at university they just, I just really wasn’t really part of their lives. So in that regard it’s much easier. It’s much easier to be I suppose a loner and be on your own at university, and equally so it’s much easier to bump into people who you might be able to connect with.
 
What did you study there?
 
Science communication. If you… that makes sense. Communicating science, sociology of science, history of science, cultural science, whatever that means. I will eventually specialise in philosophy of science which is what I’m currently doing now.
 
So you left university what did you do after that prior to getting a diagnose?
 
Well I left university and then went straight back to university and did my Masters and that was all good for about ten months or so. It was, I was doing something actually I was interested in and found that once I got to the level of postgraduate people were much more intellectual. The, I guess the only way you become postgraduate is if you are very intelligent, or you can get funding or you’re very committed and willing to work part time, which is what I did. And so in this regard I was able to connect with people in a way I’d never really done before, I actually had a situation whereby I’d be invited out socially to the pub and just go there and talk to people, granted I struggled, they did notice something was abnormal about me, but I don’t think they really cared that much. So that was all good.
 

Sam stopped talking to his parents when he was 17. Since learning his diagnosis he has resumed...

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Oh indeed. My family do know about my diagnosis, but it probably helps. I get the impression I was a difficult child, especially from about the age of 15 onwards I was rather difficult to deal with, I suppose they thought I was just being a stereotypical teenager. But just to a rather extreme degree, and perhaps to a degree I was. But also, to a degree I wasn’t, because I generally couldn’t cope with life. I was genuinely sort of struggling. And I admit this sort of perhaps continued on, later on in life, but, well basically when I was 17, I stopped talking to everyone because I didn’t... I was getting nothing from them. And a part of that was being cold and callous and calculating as I am, I sort of stopped talking to my parents which admittedly living with them at the same time was rather difficult, it was rather a flawed strategy I don’t know what I was doing but, suffice to say I gave it a go, and once you’ve gone to that stage, where you normally recognise someone as your parents as it were, and that sort of cold heartedness, it’s difficult to go back. 
 
It’s been a long learning process, we’re talking a good, oh dear, nine years ago now since this happened, and it’s been a long learning process, and it’s taken three or four years, in the last say two or three years at least anyway, I have been much more… I can talk to them much easier and it’s been much more closer with them which is all fine. And also them knowing I’m autistic, as they’ve done for the last three years now, had probably makes things a lot easier for them as well, knowing why I am necessarily, I don’t know, intolerant of them. I’m not very tolerant of anyone to be honest, but when it comes to my parents, I can get away with it more, I suppose because that’s just the way parents are.
 
 

Sam finds socialising difficult partly because he finds most people uninteresting.

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I’m supposed to talk about sociability. So sociability would mean to talk about I suppose alienation and distance. For some reasons there’s always been this massive inseparable barrier between me and everyone else. I don’t really know what this barrier is, but I don’t think it purely comes down to, a lack of social skills. Yes, it’s very difficult for me to talk to, most people. Conversations go very quickly. I have to, I often have to take a step back and think what I’ve got to say before I actually say it, by which the conversation’s usually moved on. 
 
Very, very, particularly very quick and all the subtleties I suppose. I often always seem to get things wrong, I don’t know why. I can often, if I have time to think about something, I’ll know, I guess from experience, that some things are not appropriate to be said. But it’s instantaneous. You’re in a conversation and it’s rather quick and you’ve got to make a decision. Do you just say nothing and remain silent? In which case it dies out. Or do you quite simply commit yourself and say whatever’s on your mind? Which is a good possibility you already know in advance it’s socially inappropriate, but what’s the alternative? Just not saying anything at all? Very difficult.
 
But beyond that it’s, I guess it, I suppose, it very much relates to what I was talking about a moment ago. That, I find people often [laugh] I find people often very uninteresting. Some people are very interesting; I’ve got a number of friends who I perfectly enjoy the company of. But most people I just find incredibly banal and boring. Whereas your average person seems to be able to at least hold together a conversation with anyone.
 
And they seem to, I suppose what I’m saying is they seem to be able to gain some sort of social element from it. That they seem to when they have a conversation with someone they’re gaining the benefits of being sociable has a positive psychological effect on them in a way that it probably does a bit to a degree with an autistic person, but nowhere near enough, autistic people need much more than that, much, much more than that. At least I do anyway.
 
And so it’s, it’s another barrier and in many regards probably even greater then the levels, lack of sociability, lack of social skills. I suppose I can at least cope largely with social skills, but as much as a struggle. But it’s just simply, I don’t want to talk to most people. I suppose they’ve got their, their own minds full of all sorts of different things, and they don’t need to be so focused and absorbed, whereas for me, it’s just more, much more difficult, much more difficult to really care about anything to be honest. Hm. 
 
 

Sam is more optimistic about the balance between socialising and being on his own.

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And on the other hand of course, which I’ve been looking for many years of feeling distant and alienated and not connecting and all that sort of thing, on the other hand, a sort of mental health check up where it’s often very difficult to function at all, quite simply. Depression and all that sort of stuff, and there’s a constant sort of, you know, what’s the word? Conflict between the two. And between functioning and having a normal life and spending the rest of my days in my room reading or whatever and not interacting with the outside world, which is certainly easier in some regards but ultimately leads to far worse places psychologically and also for my attempts to live a happy life. So yes, it depends. I’ve been optimistic in the past, but it’s not worked. I perhaps have at least a level of optimism here which is perhaps more well founded. We’ll see. 

 

Every single bill is a new challenge for Sam to deal with.

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And probably even just on my own, I suppose, trying to live a practical life. If I want to do things like, sort of paying a bill, well the number of steps that simply takes to do that is really quite considerable, and it creates a pressure from trying to switch off my brain from whatever it’s previously thinking about, towards focussing on something like simply paying a bill. It’s really quite sizeable the number of steps it makes me take, where most people can do it instantly, but every single one’s a new challenge. Whereas the simple ease with which you can simply just sit there and think about whatever, or do whatever you want to do, whatever your mind’s particularly focused upon. That to my mind is one of the essences of autism. What really demarcates the autistic person from a normal person as it were, that sort of level of obsession, of course, there are other distinctions as well.

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