A-Z

Life on the Autism Spectrum

Autism, feeling different & wanting to fit in

There is continued debate about whether the autism spectrum should be seen as a form of difference or of disability. Most people we spoke to talked about feeling different. For some, this was a positive feeling while others described feeling isolated and wanting to fit in.
 

Martin likes not being 'an ordinary Joe'.

Martin likes not being 'an ordinary Joe'.

Age at interview: 16
Sex: Male
Age at diagnosis: 12
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I would say it’s good really. Like I say it does make you different. You get the learning contract and everything. It has its uses at least, you know. I’m not that much different from other people anyway I don’t think.
 
You said it makes you more interesting. Can you say why? What you mean by that?
 
Well, you’re just not as bland, you’re not an ordinary Joe are you? You know, it’s quite nice really. More fun as well [laughs]. Different.
 
More fun, can you give me an example?
 
Well me and her always have a laugh you know. To get around a supermarket you’ve got to have baguette fights with her and everything like that which it’s quite fun really. I don’t mind. You know [laughs].

 

 

John L prefers to think about what is good about being human rather than what is good about being autistic.

John L prefers to think about what is good about being human rather than what is good about being autistic.

Age at interview: 39
Sex: Male
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Ooh. Positives. This is one of my…,it's the one thing, thing, I think 'hmm, I'm not sure about this'. You see these memes about this type of thing as being on the spectrum, and you think 'Hmm, really? Or are they just, or are you just projecting on what you like to believe, about Einstein, or whoever else? Are you confusing traits with the diagnosis?' Those are different things. And I think there's a difference between having some traits that could be recognised as indicating autism, and having the communication barriers and the social barriers that comes with being, being on the autistic spectrum. And those aren't - you know. So I worry that it’s… the question, you know, so I worry about that sort of thing, where the question for me is about what's good about being human? Not about what's being autistic. And I think that, you know, I think having some distance allows me to think about things. 

But if you look at say, a good example would be the producing of the American constitution. And you've got people who mainly farmed, who made it, you know, so they had a lot of practical things to do, but I had time to think and time to read, and time to understand. And it feels like if anything, we have an increasingly accelerated world, and everything's sort of next minute, next thing, Twitter particularly is a good example of that accelerated input for our media. And it's like, if we just had time to breathe and time to just breathe and takes things in, do the reflecting and everything else, that might actually give you something. So I'm, I'm not quite sure whether what we're talking about is being autistic, or just human sort of traits that we just sort of seem to misappropriate as being special, when in fact they're not really. It's just, you know. If we just stop and breathe and relax, and think, we can try and sort of get an understanding. I suppose, you know, I have an aptitude for trying to learn and think about things. Not everyone does, that's fine. But I don't think that's particularly autistic. I don't think anything of what my skills, abilities and my strengths are, are particularly autism based. They're about my personality as a person. The autism is a part, part of that. But it influences it. I'm not sure it actually is a quality of autism itself. So I'm, I'm still sort of trying to work, work out what autism is, and what it means.
 

Paul I sees himself as Paul first; “a human like everyone else”.

Paul I sees himself as Paul first; “a human like everyone else”.

Age at interview: 29
Sex: Male
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Do you see yourself as autistic? Now that you've broken it down?

That's a good…yeah. Do I see? I don't see myself purely as autistic, no. I see myself as Paul, first. A human like anyone else. Seven billion people on this planet. If you just gave every one a bloody label, you know, where's the person? You know? You can, you can put… you can slap a load of labels on, you know, Branston Pickle, but you really want to know what's inside the Branston Pickle, don't you. You want to experience it. A label is just a marker. It is a gateway. It's not necessarily a definition. So if you're asking me if I'm identity first, no I'm not. And I know that will annoy… sorry, people who are. Because I know that, I know it annoys some people, some people on the spectrum. But I've had so… just please, people who are going to be watching this, if you listen to my early years, I struggled to find the person. So I think in, at least in Paul's reality, hopefully you'll understand why I want to be seen as a person first, because I struggled to get there. Because of all the kaleidoscopic difficulties I had. And even having a sense of self was hard to acquire, because of those things.
“I think we are always trying to fit in because I always feel that I am on the outside anyway. And it’s really hard work. And you know that you are different. You know you do things differently and you know that you do, do some odd things. But you are aware of that, but everybody is different. Everybody has got their right to be different but just that most people don’t understand what it is like to be the Martian in the playground if you like, or the odd one out.” 
 
“Loneliness, I think, sort of becomes the default setting”
Feeling different was a lonely experience for many people we talked with particularly because of difficulties in socialising and making friends. Paul, for example, said that he didn’t feel involved in social situations as a child, and didn’t feel at ease to get involved in activities. 

 

Mark always felt different to everyone else.

Mark always felt different to everyone else.

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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I think, it really, sort of all stemmed down to never quite feeling as though one was the same as everyone else. One wasn’t really part of ‘the’ group. People were always somehow distant.  I remember being sort of five, six years old, and my grandmother used to tell me constantly all the time, you know, “Stop acting like an old man,” because I was very serious. I didn’t play in the dirt. I didn’t you know ever sort of come home, with you know taken a knee out of a pair of trousers.  You know just these are not things that I did and I think I sort of viewed other people as sort of something odd and peculiar, something to be studied.  And you know there was always sort of ever present, particularly my aunt was one of them, constantly being told, “Smile it might never happen.” And always thinking, well surely if one is happy, one smiles, if one is unhappy, you frown or whatever, you know, and if you are sort of fairly neutral well surely, you just have a fairly neutral expression. Shouldn’t that be how it works?
 
You know. I hadn’t sort of clicked, no you are just expected to smile and grin like an idiot constantly all the time, because that is what people do and if you don’t they think there is something wrong. And if anyone says, “How are you?” the response is, “Oh fine. How are you?” People have no interest. It is just what people say and I never really sort of quite understood what was the point. You know, why do you do that? You know, it always seemed so inane and so stupid and to be honest, in many ways it still does. But now, being somewhat older, I have sort of worked out why people do it, that is just how people sort of [2 sec pause] communicate. It is just sort of vague contact with no particular purpose. You know sort of an expression of, you know, I am not hostile to you. 
 
But it always just sort of bothered me, the whole sort of pointlessness of it and being expected to basically behave in the same way that sort of the stupid little people do. You know what was the point? It just seemed, it always, as a child it always seemed just so sort of beneath me. That is very much how it felt, as though, you know, always other people were somehow some sort of a different species. Their behaviours just seemed so bizarre and seemed to pointless and so stupid. You know why did people do these things? What was the end result of it?
 
And [3 sec pause] I think I seem to have a grasp on it all now, but I remember just always sort of feeling as though I am not really the same as these people. You know, I don’t really get why they do it. You know, it makes no sense to me. And it was always very much… I mean I have heard the analogy before as sort of viewing the world as through sort of a pane of glass. You can see it. You can communicate with it, but you are not really a part of it. I think that is very apt.
 

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

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

Age at interview: 27
Sex: Male
Age at diagnosis: 25
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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.

 

One woman said that the hardest thing she had to deal with was; “Trying to get on with everyone, sort of trying to act, sort of act normal, and people thinking that you are normal but thinking you are strange because they don’t know what is wrong with you.” Harriet said “I have known ever since I have memories that I was not like other people” while Mark commented; “I never sort of really felt as though I belonged and I think that was highlighted, particularly in my family because, you know, I was so very different to my parents and my sister was so very similar to my parents. It sort of highlighted and made me feel … basically … like a freak.”

 

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

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

Age at interview: 18
Sex: Male
Age at diagnosis: 8
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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].
 

Duncan preferred to be on his own when he was younger and always preferred structured games like...

Duncan preferred to be on his own when he was younger and always preferred structured games like...

Age at interview: 17
Sex: Male
Age at diagnosis: 13
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So I don’t know how, and I always preferred to be on my own when I was younger, but it has changed a bit since then, so, I prefer to be with people now, well more than I did, when I was, you know, 11, 12, 13. So and, I don’t know, I am not into BMXing and skate boarding now but I thought I was going through that phase and I very almost did, but [laughs] but I sort of went into it for about a month or so and then sort of was distracted by the computer games and the War Hammer again. And it was just sort of, I don’t know, I guess it was, once, I don’t know, I used to have a very different imagination to everyone else as well, whereas they might think of games to play, I might, don’t know, find a book to read, and you know, keep my nose in that for days on end or, you know, do, I guess do sort of activities that was, you know, one person or maybe if it was, you know more than one person, it was with three or four people tops and maybe have a game of tig or once in a while or something like that.
So when you say you sort of like almost got into the BMX and… was that because you were trying to change the way you do things or was it because you just felt more comfortable now?
It was, I don’t know. It was sort of it was an attempt to try and fit in, but I mean, you know, I guess, I don’t want to say I gave up trying to fit when I got the diagnosis but I certainly didn’t try as hard to fit in. And I didn’t you know, I wasn’t. And I sort of became slowly, it started slowly, I started slowly being more outgoing at first and then it suddenly, I guess gathered pace, and sort of, you know, got the ball rolling I guess.
 

When she was first at school, Catherine had no friends apart from her cousin.

When she was first at school, Catherine had no friends apart from her cousin.

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Yes. I mean school was just really bad for me, because I mean I was the shy kid.  I didn’t sort of have friends, I mean say primary school, I just felt really left out, and I didn’t really have any friends and my Mum just remembers me talking to the dinner ladies, going round the playground with the dinner ladies and things and I sort of… I remember just playing on my own.  You know, there was this thing called the island  in my school, which was just this raised bit that had trees and things on it and I just used sit there and pick about with the trees and things.
 
And I did have one friend who was my sort of cousin, who, you know, who I had sort of known since I was baby basically  and we used to play about together. But other than that, I just sort of didn’t really understand, or I didn’t really sort of know. I was just into reading. I just used to read all the time, and I didn’t really kind of, you know at my old primary school, I didn’t really sort of have any friends or anything, but I was, you know really bright. I was kind of like top of the class with reading and everything, you know, it got to the stage where I had read all the books in the school, and had to actually go back and start reading the basic books again, because I had read all of the top, the top level books and things.  
 
And you know, I got bullied I got sort of picked on a lot, for being shy, I guess, for wearing glasses. That was always a big thing. I got called four eyes. And I guess because I was such an easy target, because I was so shy, I didn’t really have any friends and I was just all little and geeky and you know
 

Richard had a solitary childhood.

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Richard had a solitary childhood.

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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Richard: It never occurred to me. I suppose like most people I was the way I was and that was all I knew. And perhaps I hadn’t really considered what was portrayed in films and plays where obviously you do see a lot of emotion portrayed. That is what it is about. I just hadn’t, hadn’t considered it, as applying to myself. As a child I was very solitary. But I didn’t have friends and at the time I think my understanding of that was, I don’t have an interest in football, that loses me most of my friends, I still don’t have an interest in football which means I am not going to make friends at work. But that doesn’t bother me. And at the time, when I was a child I don’t think I ever thought what was cause and what was effect. You know, I was different from most of my age group in that I was a lot more interested in maths and physics and not at all interested in football and that made me different. I would rather sit and read then go and play a sport. That made me different. So if I didn’t have any friends, it might have just been because of that.

 

What about other family members did they view you as different do you think?

 

Richard: My father was almost certainly aspie as well. Too late to say now, but….
Sue: I think, too, Richard is very intelligent and he comes from a family that have regarded intelligence and educational attainment as very important. So in that respect he fulfilled their expectations of him. And they also were quite independently minded sort of people, so any idiosyncrasies wouldn’t necessarily be seen as such. They were quite acceptable, so you know the fact that…. I know from what his sister said, you know, that his mother did try to invite children into the home but would find that the children that were invited in would be downstairs playing with his toys and he would be upstairs in his bedroom reading. That sort of thing happened when he was a child.
 
But they didn’t seem to see that as a problem, in any way. Well I think they felt that as long as he was doing well, educationally, then socially there wasn’t going to necessarily be a problem. I mean his father as he says, we think looking back that his father certainly almost definitely had Asperger's as well. And he was very focused within his career and had got on quite well in many respects, but socially he was very lacking, and his mother tended to fill the gap really, which is then what I found I was doing in our relationship. I was trying to make up for the inadequacies socially which again was stressful. But we never actually got to the point when his parents were alive of ever being able to talk about these sorts of things with them.
Richard: I think that they came from a generation and a background where you don’t talk about that sort of thing.
 

Tim and Julie discuss the ways in which Tim was different when he was at school.

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Tim and Julie discuss the ways in which Tim was different when he was at school.

Age at interview: 39
Sex: Male
Age at diagnosis: 39
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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.

 

Several people were baffled by everyday unwritten social rules such as asking someone ‘How are you?’ because the expected answer was usually “fine”. These social niceties seemed to them unnecessary, meaningless or banal. They felt a distance between themselves and other people. A few people felt as if they were behind a pane of glass looking in on others.

 

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

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

Age at interview: 26
Sex: Male
Age at diagnosis: 24
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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. 

 

John walks around and feels that 'everyone has 'got it' apart from me'.

John walks around and feels that 'everyone has 'got it' apart from me'.

Age at interview: 65
Sex: Male
Age at diagnosis: 62
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And I am just not. [laughs] I can’t see what, its, its... I was reminded of this the other day, I went, diversifying slightly, I went to a concert by a chap I know in [City], a singer/song writer. And he has made twelve alums on twelve different labels, everybody in the music business knows him. He’s opened for everybody. He is has opened for Bill Wyman. He sang for the Charlie Watts band. He has opened for Paul Jones and the Blues Band. He just recently opened for a [2 sec pause] for Gloria Gaynor. He has opened for everybody, he has made twelve records, twelve labels, cannot get a hit. He has written a song called ‘Everybody… everybody’s got it, everybody’s got it, everybody’s got it, but me.’ And he just doesn’t know how he can a hit.
 
Well I feel like that with life. It is as I am walking around, and everybody has got it, but me, because I have got Asperger's. You can say it sounds a bit silly, but it is absolutely true. And I have found this, with you know. It is as if we don’t see something. We don’t grasp something from an event. Something important. It is nothing to do with academia. It is not really to do with qualifications. I have always had difficult seeing the relationship between qualifications and employment. Or even well qualifications are not everything, when social status comes into it. No I would say that I am reasonably well presentable, I am I not, I mean I am not, I don’t sort of wander round particularly dishevelled or anything do I? But I just don’t understand it. I mean you are laughing, but I mean I just don’t understand. It is funny I suppose, but it is not actually so funny when are on the inside of it because I know I will go out of here now. I will go back home, like a lot of people I know with Asperger's, I have since found out, it’s very characteristic, cluttering. My house is unbelievable. Books, magazines, newspapers, mountains of stuff, stuff, stuff, stuff.
 

Steven thinks that there are so many unwritten rules to life but nobody is there to tell you what...

Steven thinks that there are so many unwritten rules to life but nobody is there to tell you what...

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He was asked to fill a few, it was a form, to fill a form in about how he felt on certain things and one of the things they wanted to know was what do you more than anything at school? And he said to be normal. And he is very, very much aware that he is different. He is very much aware that he does do things and because he doesn’t understand the social side of things which makes it more – when you don’t know what is expected of you and yet you are supposed to do something. It is like going to, I suppose the only way I can… it is like going for a job and you get your job and then you are expected to sell a car to somebody for a large amount of money. How do you sell it if you don’t know. At school you are supposed to know how to fit in. And there is so many unwritten rules to life of how you do things but nobody is there to tell you what they are. And it is difficult and you do make mistakes and you keep making mistakes when you don’t know and you get angry with yourself because you know you are making the same mistakes but if you don’t know, if nobody takes the time out to tell you what you are actually doing wrong then how are you ever supposed to know.
 
It is like speaking a foreign language but you know only being able to write half of it down. If that makes sense. It is like, yes… some strange things happen on Planet Zog. Yes.
 

Daniel has learnt that the most important thing is to accept yourself as who you are.

Daniel has learnt that the most important thing is to accept yourself as who you are.

Sex: Male
Age at diagnosis: 11
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You said a bit about, you mentioned the theory of mind? Can you say a bit about that?

 

Daniel: That is quite funny actually... really the theory of mind. That sort of the, the way that has sort of improved is, actually being around people with Asperger's a lot, because when we spoke, I am aware that it has made me aware, of what the issues are for them because I have got, obviously, I have had those experiences, for myself  but then it is sort of understanding that those issues are worse for other people and everything and so it helps with that, because it sort of felt, I think the main thing is, accepting yourself  if, sort of it, with like anxiety and things. If you can’t accept yourself and feel sort of at ease with yourself, everybody else is not to be at ease [small laugh]. So it is sort of, it is sort of... I mean sort of I think it is quite linked with anxiety and things like that because it  confuses you which I suppose everything does, when every little thing that adds into it just confuses the issues with what is somebody else thinking, because in a sense if you never feel normal yourself, never feel like, well this is me, and that I am happy with it, then you can never really understand how other people feel, because most of the people have the same issues, even if they haven’t got Asperger's.
 
I mean, there is, there is so many issues in life and so many different things that go wrong and what have you, sort of shape how you are and sort of understanding that everybody is different, and understanding that... I suppose understanding that  because people have had these different experiences that it makes them different, and it means there is something in life, but it also means that, I mean if you sort of know somebody who has broken their leg or something and you have never broken you leg, but I mean I broke my shoulder recently, so it sort of, I know what it feels like to break a bone and everything so in a sense you know what it feels like. Although it is a completely different part of the body or what have you, so it is sort of being able to just accept, because if you haven’t been in a situation, there is no way you can put yourself in that situation. It is more about empathy then anything else. It is sort of more with theory of mind to me, it is more like how I would I feel if it was in that situation, because that is all it is really. So it is properly sort of…
 
Margaret: ...From my point of view the way I see it with Daniel and his theory of mind, is more a case of something he has learnt.  He can pass the theory of mind tests when somebody reads him out a scenario and says, “What will happen?”  Originally he didn’t understand the first one I told him.
 

While Richard can give a dictionary definition of the word enthusiasm, he says that he has never...

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While Richard can give a dictionary definition of the word enthusiasm, he says that he has never...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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He is very intelligent, he can give you a dictionary definition of a word but he himself, can’t define, can’t identify with that definition. So, for example, at one time I tried to talk to him, I said, “Do you understand what enthusiasm is?” So he can give a dictionary definition of enthusiasm and I said, “Well what does it mean for you?” And he would just go blank. So I tried to describe what it would mean for me, you know, enthusiasm you know, for example a child is enthusiastic when you say, and “We are going to the zoo tomorrow.” And difficult to settle the night before because they know they have got a trip the next day and they are very eager to get out the house into the car because they know that they are going to something that they enjoy. They are asking all the way there, “are we nearly there yet?” That is a bit silly, a bit of a silly phrase, because you know kids ask that all the time anyway. But you know what I mean? And you get there and one of them wants to go and see the monkeys first, and another one wants to go and see the tigers, and they are all means of expression enthusiasm for what you are doing. And when I explained this to Richard, I said but what about you, he said, “I have never felt that, I don’t know what that is.”
 

Laurie describes feeling like a 'really tiny person in a huge big world'.

Laurie describes feeling like a 'really tiny person in a huge big world'.

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I just feel like a really tiny person in a huge big world and that sometimes it feels that it is just happening all over there somewhere and I am living in a bubble or living on the other side of a plate glass window to everybody else and that is something that a woman called Donna Williams described in one of her autobiographical books and she is a woman with autism. And reading a thing like that, it is yes, that is just what it is like, you know, people say things that I have said in a slightly different way. I said it is like living in a bubble. She said it is like living near the side of a thick plate glass. It is like being here, but not really being part of what is going on.
 
It is like you are just a spectator in this thing, you know, and it is kind of like really hard being alive sometimes and I go through when I wonder just how much long I have got left, you know, because I really don’t want all this pain in my life, living with pain. Daily. And it, it gets tiring and I don’t want to keep hurting and I don’t want to hurt every day and I don’t want to struggle through things every day. I don’t want to have days where I can’t feel the rain on my face, on the wind in my hair because when I don’t notice things that I can pick up and touch and are real because everything just goes surreal and, and life just hurts, just hurts being alive. And that is quite hard and that is probably something that is in common with other people with autism too.

“Life would be so more interesting with more autistic people”
Several people said that they didn’t want to feel different while a few found their difference positive or felt “50-50” about it.

 

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

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

Age at interview: 27
Sex: Male
Age at diagnosis: 25
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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.
 
 

Christopher is unhappy he is autistic, but also glad that he is.

Christopher is unhappy he is autistic, but also glad that he is.

Age at interview: 17
Sex: Male
Age at diagnosis: 14
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And can you remember what you thought when she said that you had autistic, you were autistic?
 
Christopher' I’m not sure. I was a bit unhappy. And I was a bit pleased. Because I was unhappy because at that time I thought that it meant that I was disabled whilst I still think I’m disabled. But it made me think that I’m stupid, that’s the best I can come to. But I was also pleased, because it made me different, well more different than I was already.
 
Mother' You mean unique?
 
Christopher' I’d say unique now but at that time I’d have felt different. Hm. Well over the last couple of years, I’ve felt that I’m more unique than just different. I’m like… Yeah. But, I’m just special. Not in the way that we use special to describe someone who’s not very clever, like that, I’m not sure. But occasionally it makes me unhappy because I don’t, because there are times when I don’t want to be different, I just want to be like everyone else, but then again I, whenever I think like that, I always rationalise that, that would make my life boring. You know, I wouldn’t be as interesting as I am now. I’d be just like everyone else, listening to the same rubbish music, not doing anything, getting drunk, you know, for no reason. You know, and so it’s kind of a 50/50 thing. I’m unhappy that I’m autistic. But I’m also glad that I am.

 

“Putting on an act became mentally exhausting”
Feeling different was tiring for some people. They talked about how draining it was to try to fit in all the time. As one man said “I think we are always trying to fit in because I always feel I am on the outside and it is really hard work”. Daniel likened the experience of daily life to the beginning of the film Saving Private Ryan; “every single thing takes twice as much concentration and twice as much energy”. A few people said that once they had the diagnosis they could stop trying so hard to fit in and this was quite a relief. Others tried to find strategies to fit in better (see ‘Strategies’).
 
“I was odd, and I was treated as a bit odd”
A few people talked about the ways in which other people perceived them as different.
Feeling different was not helped by the fact that many people felt that non-autistic or neurotypical people found it hard to understand what it was like to be on the autism spectrum.  This added to a sense of isolation for some people. 


Last reviewed February 2020.
Last updated July 2016.
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