A-Z

Life on the Autism Spectrum

Communication, interaction & autism

The characteristics of autism vary from person to person but are generally divided into three main groups; difficulties with social communication, social interaction and social imagination (or the theory of mind). Difficulties in communication involved difficulties understanding communications from others (including misunderstandings) and difficulty in knowing how to communicate with others. Difficulties with interaction include the desire for social interaction but also the exhaustion and frustration of finding interaction uncomfortable, dull or confusing. Lorna Wing originally described the triad of impairments as social interaction, language and rigidity of thinking and behaviour.
 

Luke describes the triad of impairments.

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Age at interview: 18
Sex: Male
Age at diagnosis: 8
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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.
 
The people we talked to explained how some or all of these kinds of difficulties affected their lives and those of their partners and family members. A few people we interviewed had limited speech and were supported by key workers. 
 
Misunderstandings
People on the autism spectrum may have difficulties with both verbal and non-verbal language. They can find it difficult to use or understand facial expressions or jokes and may not understand the ‘give and take’ nature of conversations. 

 
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Julie lets Tim know she is joking by saying 'joke alert'.

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Age at interview: 39
Sex: Male
Age at diagnosis: 39
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Julie' And I find that with Tim as well, sometimes I might pull his leg about something and he’ll look at me as if I’ve just like really insulted him or something you know. So, but we’ve got now that we can laugh about it, I just say, you know, “Hello, joke alert.” [laughs] And then he’ll smile and he’ll laugh.
 
Tim' I think it is often, trying to, you know, cope with that. I mean what I’ve sometimes said to Julie is if she does realise that I’m just going off into an autistic moment, is just to hold her hand up and say, “Look autistic moment.”
 
Julie' “Go and calm down.” [laughs].
 
Tim' It’s often, I think if Julie can do that, it’s often a lot easier, because if she stands and argues a point, I just keep on arguing back. If she can just say, “Look you’re being autistic, you know, go and calm down for two minutes”, and then we’ll continue discussing, you know, to discuss it, but that can happen.
 
Julie' Yes. I just, to sort of stop you in your tracks.
 
 

Ian finds it difficult to know if people are laughing at him or with him.

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Age at interview: 22
Sex: Male
Age at diagnosis: 8
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I find that hard to understand, laughing at someone or laughing with them. Because my dad, the way my dad laughs sometimes I think he’s laughing at me and that’s why I get nasty with him, because I think he’s taking the mickey. I’ve got to watch my language because I know what I’m like sometimes. So, and that’s why I get funny with him. I say, “Are you taking the effing mick.” I usually say to him you know, because I do swear quite a bit because I think, because I think it’s just normal to swear, you know, because everyone does it. And I’ve picked it up off everybody else, and I think well, if everybody’s “effing” this, “effing” that, well I don’t do it as much as I used to but I thought to myself well if everyone’s doing it, that’s the normal thing to do. You know what I mean, it’s the 21st century isn’t it? And that’s what I think, that’s how I’m supposed to be you know. I think, because even girls do it, even girls swear you know.
 
Are saying, sometimes I don’t understand if somebody’s laughing at me or with me. Is there some support do you think could help you with this?
 
I don’t know really. But how can you tell if someone’s laughing at you or laughing with you, because, because when they laugh it sounds exactly the same doesn’t it? You know, because I think I say something, they just burst into laughter about it and I feel like, I think, to me I don’t think it’s funny. I tell him it’s not when I think he’s laughing at me because I’ve said something because, because to him it all sounds stupid or something. And that’s why I think you know, ‘who the hell do you think you are?’ You know, and that’s why I get all gangstery on him, you know what I mean, as he calls it. You know, I say, “Well, you’re disrespecting me, this, that and the other…” That’s when I get all funny with him. You know, I’d say he doesn’t do it as much. I think he tries not to laugh, laugh that much because he knows that, because he thinks that, because I always think that I’m being, because I think that he’s laughing at me when he knows that he’s not. So it’s quite, [laughs] quite confusing, seriously. 
 
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Jamie 'bumps into difficulties' now and again because he misinterprets things.

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Age at interview: 22
Sex: Male
Age at diagnosis: 9
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And do you feel you have enough support?
 
At the moment, yes. I mean obviously I sometimes bump into difficulties now and then, because I might misinterpret things or... but apart it, it just happens now and then when you least expect it. But apart from that, it seems, it seems okay. But I think sometimes people having an understanding might help in some way, because they might be thinking I’m weird, you know, taking things literally all the, well not all the time, but now and then, when they don’t expect me to.
 
Is it mostly about you being literal?
 
Yes, as in taking things literally but sometimes, you can tell when people are joking and sometimes not. But sometimes it’s hard like that when judging you know, whether someone’s really joking or not. That’s one of the problems I’ve bumped into quite a lot, especially at work [laugh]. Because I used to have a laugh with the guys quite a lot at work, so I’d know when they were joking quite a bit but sometimes when they were serious, I sometimes thought they were joking, which is not, which is not good [laugh].
 
So what would you do in that situation, would you realise at the time that could be misunderstood. Or did you realise later thinking back, or…?
 
Yes that’s the way I work, because I like to look back on my behaviour and replay it quite a lot in my mind and try you know, figure where I went wrong or, and when I realise I did, I try and you know, speak to someone about it, or … but yes.
 
Do you think sometimes maybe you didn’t get it wrong? Whether it could have been the other people?
 
Yes. That’s happened, yes, sometimes people tell me that I might have misread their meaning and I think I went wrong or the other way round. It’s quite a confusing circle.
 
Do you think you’re learning to be less literal?
 
I think I have over time though, yes, I understand humour, much, well much better now than I did when I was younger, because I used to, according to my reports in my diagnosis and stuff, I used to take humour literal all the time, and any… those things that people said, but now, I understand jokes really well. I think, I think you just learn over the time, different experiences.
 
 

Richard feels uncomfortable about jokes made by a member of staff.

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Age at interview: 22
Sex: Male
Age at diagnosis: 2
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Are the staff helpful there where you live?
 
Yes, I may very rarely have the odd issue with them. Such as one staff member trying to joke with us and not admit he’s joking for a while, and it can get really annoying.
 
When you say he sort of jokes with you. What he’s joking but you don’t think..?
 
Yes, he’s joking. I can read between the lines and I can tell he’s joking but he doesn’t want to admit it. I think he’s just messing around in a way which makes me feel uncomfortable.
 
So he’s sort of winding you up you think?
 
It’s not like he does it all the time.
 
Does he know he’s doing it do you think?
 
Yes.
 

Understanding things literally was a common area for misunderstandings. John, for example, felt that he took the instructions from his father when he was young to “be no trouble to his Nan” and “you’ll never get anywhere without maths” so literally that they have coloured his whole life. Being literal also led to people being overly trusting. Laurie commented “I basically think I’m rubbish at relationships and I am slow to figure things out sometimes. I’m not savvy and I think life could have been so much different if I had been a little bit more streetwise”.

 

John describes how people with Asperger syndrome interpret things literally.

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Age at interview: 65
Sex: Male
Age at diagnosis: 62
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There is a police officer in [City] who is trained to deal with people who are autistic because we, it is not likely to happen to me, but it is quite likely to happen to somebody else. And it is to do with this question of interpretation, of interpreting things literally.
 
If you ask me, “Do you hear voices?” Let me simplify that. If you said to me, “Do you hear voices?” I would understand what you meant. What you meant is do you have auditory hallucinations? Do you hear voices? Well no. But in fact that is not true because the truth of the matter is yes, I hear voices, I hear voices all the time. I hear your voice, I hear the bus driver’s voice. I hear the woman next door’s voice. I hear voices all the time. And somebody with Asperger's if asked do you hear voices, would truthfully answer, “Yes I hear voices”. “Do you hear voices when there is no one there?” A truthful answer is yes. There are voices on the radio, on the television, I hear records. Yes, all the time I hear voices of people who are not there all the time. That is the truthful answer.
 
I know what they mean. What they mean is, “do you have auditory hallucinations” to which the answer is “no”. But somebody, I could quite easily see how somebody with Asperger's would answer yes and not only in that situation, in another situation, a police situation for example. You might easily answer yes to a police officer which will land you in serious difficulties. I am sure it has landed people into serious difficulties in the past but all you are doing is answering the question truthfully. But while you are answering one question, the police are obviously asking you a different question.
 
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Julie has to mediate misunderstandings that occur between her husband and two sons.

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Age at interview: 39
Sex: Male
Age at diagnosis: 39
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Julie' Tim can be difficult to live with sometimes. And I’ve got two children as well, with autism as well. It can be quite hard at times. I think problem is Tim and John are very like and it’s sometimes I’m in the middle, you know, trying to smooth things over, because John takes things very, very literally, and because Tim’s people skills, maybe aren’t the absolute best. He’ll say something which John will misinterpret and then before we know it we’ve got major problems, and then Martin don’t understand what’s happening. So he’ll then get upset and so I spend a lot of my time, just sort of mediating really.
 
And with work I think he does really well in his work, but working in sort of IT field again, he can get his head down and he can sit and communicate with a PC all day and limited communication with people as much as possible [laughs]. He can communicate with people can’t you?
 
Tim' Oh yes. I have to do it in work.
 
Julie' He does go into meetings and he has to do.
 
Tim' I do have to go into meetings and I have to talk to customers so…
 
Julie' Yes, but you come home and sometimes you’re quite exhausted by it aren’t you? If you’ve had a day where you’ve had to interact a lot you can see that it really does take it out of him. But you’re happiest when you are just left to do your own thing aren’t you?
 
Tim' I do sometimes worry that I don’t manage the tone of voice and I am speaking very well either.
 
Julie' Yes, quite often he’ll shout me, and it’ll be “Julie come and has some tea.” This is what he really means, but it’ll be “Jules!” You know, and I think oh my goodness the house is on fire or something, you know, it’s hard to sometimes he can’t pitch it at the right, you know, to convey the right message can you?
 
Tim' No. 
 
Julie' And quite often he’ll shout kids and they’ll come running down stairs thinking that they’re in trouble you know, and it’ll be just oh you know.
 
Tim' Tea’s ready.
 
Julie' Tea’s ready [laughs]. But to be honest we’ve come to a point now, haven’t we, I’ve spent a long time sort of working with Tim, we can change him, you know, but you can’t, you can’t, you just have to work with it. And find ways of adapting to accommodate these things.
 
 

John has always had great difficulty assessing 'good and bad faith in other people' which has...

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Age at interview: 65
Sex: Male
Age at diagnosis: 62
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The diagnosis was all about being asked questions, which I have now got a diagnostic, there is a diagnostic questionnaire.
 
And there were two questions that stuck in my head, when the clinical psychologist asked me. One was, “Do you have difficulty assessing good and bad faith in other people?” Hm. “Every time.” That is exactly what I have done for years. I have done so for most of my life over a period, at work I have a great difficulty, not necessarily with the work, but with the people at work. If there were no people involved it would be fine. But [laughs] I can’t see when I am being set up or even exploited. It is not always, it is not apparent to me when I am just being exploited or I am being abused even, you know, verbally abused at work. It just confuses me because I can’t see why anybody would do that.
 
The last job I had I was working as a marketing manager for a graphic artist agency in [City]. Quite a busy, busy office, busy agency and I was supposed to be marketing manager, which meant with other things developing productive and profitable relationships with customers, with suppliers and so on. Looking back on it, I put up with abuse and sheer nastiness from a manager for a long, long time, that nobody should have been expected to put up with. And I didn’t know how to cope with it. I just don’t know how to handle it, because to me it is simply counter productive. I was trying to do my job to the best of my ability and that was counter productive.
 
Now the other question I remember that I was asked at the assessment was, “Do you often think you are doing the right and it turns out to be the wrong thing?” Absolutely, all the time and I have got mixed… in my life I have worked for all sorts of odd characters. I think I am doing my best, what I am actually doing is walking into a trap or being set up for something. I am somehow vulnerable to it. I just can’t see it. And I won’t say it has put me off work for ever, but it is, it hasn’t encouraged me back to work because it is very, very difficult. I mean this is, over serious, quite serious issues, you know.
 

When someone told Debbie that they would start working with her in four weeks, she expected them...

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Age at interview: 44
Sex: Female
Age at diagnosis: 35
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Well as I say I had this support worker, but I can’t say whether she was any good or not because we never really did anything. We just sat there and talked and you know… and she was paid about £15 an hour just for talking and then we talked mostly about other things, you know, so I can’t really say that she was any good because we didn’t do anything and I lost my confidence. But she ended up having to leave and then I had, I saw the man again and we were discussing me having another support worker and he said, he said, “Well you…” And they said the support worker came to see me to introduce me to her and she said that…, and he said that they would see me in about four weeks.
 
Well I am very literal and if somebody says four weeks I think they mean four weeks and I waited and waited and nothing happened and then I rang up after that and said I thought they were going to be starting in four weeks and the chap said, “Well... it is going to be eight weeks.” I said, “Well really you should say, you know, I thought you meant four weeks.” I said, “You should have told me.” And he said, “Well I didn’t know how literal you were.” Well I thought that was a bit of a strange thing to say, I thought well how literal can any body be. You either are literal or… Anyway I just got distressed you know and I didn’t feel that they were accommodating me or listening to me so I ended that one.
 

Alex is very trusting but is more accepting now when people lie.

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Age at interview: 28
Sex: Female
Age at diagnosis: 3
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Are you upset when you find out that they’re lying or not?
 
It depends what it’s about really. If it was about something major or something that I thought was major then they’d probably never get forgiven and like disowned for the rest of their lives. If it was something minor and there was a good reason for them to lie, then I can kind of accept it. I think I’m a lot more accepting now, because like being on my forum on the internet like, you hear like stories of parents, you know, not lying but stretching the truth to their kids, say like, I don’t know, I can’t think of an example and I think that’s made me more tolerant, because I can see sometimes lying can be beneficial. A bit like white lies, not like lie lies. I just wish I had the ability to do it myself. 
 

Difficulties in social interaction
The unspoken rules about conversations and turn taking were not understood by several people. They did not understand how to greet people or how to maintain a conversation. Some people wanted to interact with other people and make friends, but they were not sure how to go about it (see ‘Friendships’). Some people experienced ‘face blindness’ and sometimes could not recognise people they knew in a different context or setting.

 

Laurie says the hardest thing about Asperger's is the difficulty she has making friends.

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So, yes, but that is probably the hard thing about having Asperger's, you haven’t got… it is difficult making friends.
 
It is quite a mystery to me because it was good experience working in an office environment because you see how other people work, and how other people do it, and a girl came into our team, and she started just after me and before you knew it, she had got phone numbers of people and she was going out in the evening with people, friends that she had made at work. And I was like, “How do you do that?” Because at the sight of other people, I know people who are donkeys years younger than me and they seem so grown up and I am just not really very grown up and I am often not very good at being grown up and I just feel little and everybody else is so big.
 
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, or 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.
 

Duncan often didn't realise when people were talking to him.

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Age at interview: 17
Sex: Male
Age at diagnosis: 13
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Conversations aren’t always organic. They are sort of still a little bit structured, but not as structured as they used to be. Yes. I mean when I was younger people used to have to say my name first before they got my attention and I would sort of get the gist that they were talking to me. So if they were talking in my general direction I would sort of half pay attention. Just be, well I guess I was sort of semi consciously making myself aware just in case someone was talking to me and I don’t realise it, you know, sort of, on a constant state of alert, you know, just in case someone isn’t saying…”Duncan, blah, blah, blah, blah.” And if, so I get really confused if someone says something and then says my name, and I haven’t paid attention, and they have stopped, you know, saying something, it is a bit like, whoa I missed that, sort of … And then they have to repeat what they are saying and then I get frustrated and it is just like….
 

Catherine could not bear to speak in front of other people and describes the fear she experiences...

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Sex: Male
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And basically I have hardly talked to anybody that is here. I just kind of go in. Get my tools, go down the garden, get gardening, because I love gardening and it makes me feel you know, relaxed, and I love doing it. But nobody that is there knows me, you know, it is like they don’t even my name and I have been there for years and they are sort of like, “Oh are you new?” And it is like, “No. I have been here for years but you won’t know me, you know.”   But, you know, say if, and there is usually a lot of young people about. They go out on tasks, doing you know conservational projects and things. But if I walk in, and they are all in there I have to walk back out again. If I got to get, you know, a cup of something in the canteen bit, and there is loads of people in there, I just head down, out the door, I can’t. I just can’t. It is like fear. It just… I just can’t cope with it. My head just goes… crazy and I have to get out of there. I don’t know if that is Asperger's or that is social phobia or…
 
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Harriet won't do 'social mixing' unless she is forced and avoids situations with more than three...

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I do not communicate with other aspies that I am aware of - all humans face to face bring their problems with communication and my dislike of using voice and I don't do social mixing unless absolutely forced eg work, but I never go in the staff room or social stuff or rooms with more than about 3 adults in - too much to process and they move randomly and say things I do not understand like 'how are you' or 'did you have a good weekend' .
 
I have read about other autistic spectrum people because of work and interest - it was interesting to see some things I do they also did like body movements and flapping hands etc. I began to see how school saw I was autistic. They are all very clever though and very good at communicating with others something I am not - I think the lady who designed crushersTemple Grandin,  is closer in communication skills to me as she can talk about business but not anything else and she likes things like hard pressure like me - in fact she is more how I am.
 

Vicky finds it difficult to communicate with people.

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Age at interview: 37
Sex: Female
Age at diagnosis: 33
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And living with it is quite hard because there are some things I can do, but there are some things I can’t do. For instance, let’s say if this place blew up, okay I have got my parents, my parents can actually help me out, but if my parents weren’t around, and this place sort of like exploded, say of a gas leak or something, [laughs] this is just an example, my parents would think that I wouldn’t be able to cope with it, because, I mean, yes, okay, I can make phone calls, but it depends again on the situation, whether I would be able to make a phone call and say, “Look I need some help here.” And not, and yes, I possibly could if I had to but do you know what I mean, I have got to have people around that will actually support me in a crisis. And this is just an example. But I know that it wouldn’t happen but you know what I mean [laughs].


What other things do you find difficult would you say?


I find difficult sort of like communication with people. Again it depends on the situation because if I sort of.. like I go down to a pub one night a, well not one night a week, but once a month to meet up with some friends and all the people that I go with have got Asperger's. And fine, okay that is fine. But there are some people in the group that can’t even communicate or won’t even try to communicate with us. And okay, I can communicate, but there are times when they just sort of like, do things, unintentionally if you know what I mean. And it has sort of sometimes hurt people, because I have been hurt by people at that pub group. But I know that they don’t intentionally mean it. But then it would all depend on the situation that I am actually in because I know those people reasonably well I can get on with them, but let’s say if I go into another situation, into a job where I don’t know anyone at the beginning, until I have got to know them, do you know what I mean, until I have got to know them, I will find it very difficult

 

Ian explains why he finds some behaviour disrespectful.

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Age at interview: 22
Sex: Male
Age at diagnosis: 8
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I do find it hard. In social situations, like obviously they’re talking to someone else, I must say like, when we on holiday and stuff, if they have a conversation with someone else and I feel like I’m being left out, so I butt in to join in the conversation, you know, what I mean. Or if they don’t, one thing that really gets on my wick is that if they don’t, if I say their name and they don’t answer me. Because [Grandma] used to get really hacked off with her when she never replied to me, and we had a go to her about it. I do it to everyone. But the thing, they keep saying to my, they keep saying that they aren’t ignoring me, it’s just that they’ve got, that they are finishing this conversation off. You know what I mean. But they don’t even say, you know, if you’re being called at the end of the day I think you should answer them. You know, you shouldn’t ignore them until…. You know what I mean, it’s rude isn’t it? If you think about it.
 
So if they’re in the middle of a conversation and you called, said one of their names…?
 
Yeah, for all they know it could have been an emergency couldn’t it. Like for example like if someone had a heart attack or something then you’ve got to butt in haven’t you and you’ve got to stop the conversation. It’s the same sort of thing though isn’t it at the end of the day? You still want to, want to speak to them. It’s just that I find it really, really disrespectful in a way and rude.
 
 

Mark talks about his experiences of commuting and how baffling his experiences were for other...

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Age at interview: 27
Sex: Male
Age at diagnosis: 26
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Yet people can’t understand that. You know, filling in a form for this that or the other, not turning up to an exam because you just freak out. Yet people can’t understand why didn’t you just go? Why didn’t you just do this? Or do that? It is completely incomprehensible to them that you can do lots of what they perceive to them is something, you know, difficult, you can’t do these simple tiny little things and it makes you feel like a complete and total idiot because you know you are not stupid, you know how trivial and how small these things are, and you can’t do them. 
 
And its, I think, all sort of fairly soul destroying. You know I really do feel such a complete moron because you can’t do these sort of trivial, simple, every day things. Even sort of things as simple as you know, jumping on buses, trains. I remember from when I was commuting at various points, just getting off the train. Didn’t care what station it was, just saying no if I don’t get off the train I am going to hit somebody, because it is so busy, I just can’t cope with it. You know, other people, can understand, yes it is a crappy situation, nobody likes being on a commuter train when it is absolutely jammed packed, but you have got to go to work, so you just put up with it. They can’t sort of understand that no it is the I have got to get off it, and right now. Just have to. Can’t deal with trains when they are busy. To normal people that is nothing, I mean they just … it is, I think sort of the lack of understanding more than anything else, because as I say, normal people just kind of deal with it, it is no big deal.
 

One of Paul I’s friends unfriended him on Facebook when he didn’t recognise her face.

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Age at interview: 29
Sex: Male
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Yeah, still have difficulties with face blindness. You know, who are you? What are you? Where are you? What, what, what, what significance are you, you know, in my life? In the sense of what are you in relationship to me? You know, how do I know you? I mean, I remember a lady who I met, she's a matron at the hospital where my Dad was. 

And she said "Hello Paul, how are you?"  And I was, I looked at her, and there was, you know, tumbleweed sort of going along. Awkward silence.  And I said, just said "Who are you?" Probably not the best way to say it. And she said "I'm so and so." I said "I don't know who you are, can you give me a bit more information to make it relevant and contextual?" And she said "Oh yeah, I'm [Name] from haematology, I'm the matron." 

Then it clicked. And there have been moments where I think I've unintentionally been too brisk, brusque rather, with people. I remember I was in [Supermarket name] and a lady said "Hello, Paul." And I said "Hello." And I tracked her, and she actually unfriended me on Facebook. But I understand why, because I just went up to her and I said "I'm sorry, but who are you?" You know? It was just, I knew the mistake I made. It was the way I used my voice, and I think it kind of, it kind of… I think it scared her. Because I just… it was too, it was almost interrogative, rather than "So, who are you?" I think if I could have gone back, and then, you know, next day I was unfriended. I think I understand why. I think it just, it just offended her. And that is going to happen.
There were also difficulties in processing details quickly enough to keep up with conversations. This, in turn, was often related to distractions caused by anxious or obsessive thoughts or sensory sensitivities (see ‘Sensory sensitivities’).
 

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

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Age at interview: 21
Sex: Male
Age at diagnosis: 12
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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. 

 

 

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

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Age at interview: 26
Sex: Male
Age at diagnosis: 24
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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. 
 
“I try to improve on my conversation for the next time”

People were often aware of these problems and worked hard to try to overcome them. Several reflected on conversations afterwards and tried to work out where “it had gone wrong”. 

 

Duncan describes 'social suicide situations' where he says something that makes him feel stupid.

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Age at interview: 17
Sex: Male
Age at diagnosis: 13
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Could you describe a social suicide situation?
Sort of awkward moments, like you say something stupid, and then realise you have said something stupid, and say something even more stupid, and or say something or do something awkward and then sort of combination of doing something awkward and saying something awkward and trying to make it funny and then making it even more awkward, making yourself look like a complete and utter idiot and then going all sort of red in the face and then hiding for days. 
 
And it’s, I don’t know. I look back at some of the situations, and well most of the situations I sort of put myself into, you know, and I think, “Why did I say that? What was I thinking?” It was just sort of like did I really say that? Oh god [little laugh] Sort of, that sort of reaction was usually the reaction that was, that I received back, after saying or doing something really stupid. And sort of, then of course I had, you know, weird sense of humour, me having a weird sense of humour, I often make the situation worse, quicker then I make it better. So… I don’t know, it just… although looking back at situations like that doesn’t always help, you know, sort of right I am not going to say, this, this and this. You know, ten minutes later, right I have said all the things that I didn’t want to say, okay, awkward moment, good.
 

Mary puts on an act to appear more confident than she is.

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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But I think it’s kind of... because Asperger's for me is, I mean, I’ve, you know, I’ve got all the symptoms of it and everything. It’s very subtle, so people like, you know, if I, people don’t always see that I’ve got it. And that is very, very difficult having to tell people, you know, and people say, ‘Oh you seem very confident’ and I think well may be I look confident, but I’m not actually confident inside. It’s just like a show, because I often have to put on an act. It’s like having to act to script, to like, I think you just kind of learn how to socialise. It’s something that you can learn, but I think in many ways it’s a bit like learning a foreign language, because if you go to a foreign country and you’re learning a language, you can get really, really fluent, but it’s still not like your mother tongue so it’s still difficult.

 

Daniel describes how he notices very little when he is concentrating on something and sometimes...

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Sex: Male
Age at diagnosis: 11
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Margaret' I think that is another thing I find very difficult to cope with. I don’t like being ignored. I find that very, very difficult. And Daniel does it a lot. But it upsets me more when it is the kids. If he is busy doing something, he is either on his computer or his guitar or he is writing a song or whatever and the kids want his attention, and they are asking him, and they are getting annoyed, and they are saying, “Dad…”  asking him to do something or whatever. And they come out to me and say, “He is not listening, he is ignoring me.” And I will send them back again and say, “Well tell him he has to listen.” And then I get more upset than they are. It really, really, upsets me that he doesn’t take notice of them when they want attention. I mean I know kids can’t have it all ways and can’t have everything that they want….
Daniel' But [name] has got the idea that if he comes up and punches me or something I will generally take notice…
Margaret' …because you shout at him. And tell him to go away.
Daniel' After a few minutes of him actually constantly punching me, I must admit, until I notice. But sometimes, you know, you can be  concentrating on something and unless I am listening out for things and unless I am actually consciously thinking oh they are going to be calling me soon, like if I am in the garage I won’t hear them, sort of thing. So unless I am constantly listening out for something firm, I don’t hear it kind of thing. [noise]  It is sort of I almost have to be everything consciously as well. It is like standing up and breathing, you know, things that everybody do automatically from the day they are born [laughs]. It is like if I am talking sometimes I just won’t breath in sort of thing, so for a few minutes, and then get really out of breath and, you know.
 

Simon thinks he has overcomplicated interactions because he is so conscious of them.

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Age at interview: 22
Sex: Male
Age at diagnosis: 5
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So sometimes it can be a bit of a burden, because sometimes when I sort of talk to people, I have to draw a very fine line for letting them talk, you know, about their, the things they like before I start. Because I know that as soon as they ask me about something, and it’s something I’m really into, I’m just going to go chat about it forever basically and that may disrupt for them really. Disrupt the whole conversation because it’s like there’s just me there talking [laughs] about my interest. So yes, I have to draw a fine line.
So if you have a chat with friends is it always, you’re always conscious of it?
 
Yes, I’m always conscious of that little bit. I’ve always got that inkling, and you say, “Oh go on talk about that.” And it’s like “well no”, I’ve got to sort of limit myself to it really. But I’ve just sort of just developed all this all over time really and just learnt about it. Maybe I’ve over complicated my social system or maybe I’ve understood it a bit more better. I don’t know.
 
Why do you think you might have over complicated it?
 
Well because [laughs] when I go and talk to people now, I immediately ask them a certain amount of questions and then from there on, after I’ve talked to that person and gone off elsewhere, I will then literally try and remember everything I talked to them about and remember everything they disliked in the conversation, everything they liked about the conversation and then I try next time improve on it. Yes, I know this really sounds really strange, but improve on my conversation from last time [laughs].
 
It might just be me or it might be something to do with autism. I don’t know. But yes, my social system’s quite complicated and sometimes I just won’t even bother trying to make a new friend because I know I have to go through all that process of you know, finding out everything about them. Yes, I know, scary [laughs].
 
So if you weren’t monitoring yourself do you think you’d start talking about something you’re interested in and then you won’t pay any attention to how they’re responding to you, you just talk?
 
Yes. Yes. Literally I just carry on. I mean sometimes I do open up about, you know, what I’m interested in and stuff and half the time we’re very clever who we choose as friends, because we choose people that are interested in exactly the same things as us. So it makes the conversation a little bit more easier. Because we can, sort of talk I don’t know, for hours about, I don’t know, a video game or something like that. Or a movie or a stupid toy or something like that. You know, we can go on… so sometimes we’re a bit choosy in friends. We tend to choose people that are interested in the same thing as us. And sometimes this can be a problem, especially when we’re younger at school and stuff. For example if the teacher’s got us to, I don’t know, done like a little group activity or something, and may not necessarily want to be involved in that group activity because it’s with a toy that we don’t like. So just don’t bother with it. 
 

 

Partners also found socialising tiring. Julie, for example, felt she had to be over sociable to compensate for Tim’s quietness in company. Susie has helped Oliver to learn to ask people questions and to talk about things he may not be interested in.
 
Some people talked about a preference to being on their own while others talked about the tension they felt between wanting to be on their own but also wanting the company of others. A further difficulty was the difficulty some participants had in assessing people and their motivations.

 

John is content to be on his own but that is 'unacceptable by wider society'.

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Age at interview: 47
Sex: Male
Age at diagnosis: 45
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Well you know, there is this tendency to, or contentedness if you like, you know, you to be happy on your own, you know, without, without a great deal of social inter… social interaction. And you know, while you as an individual may not have a great deal of problem with that, that is something that, somehow is seen to be unacceptable by wide society. You know, it’s something that other people find….I mean I think, I mean just to give the example of working, you know, in an office situation. That somehow to be sociable with your colleagues is kind of expected and with modern management techniques in offices like so called team working, it almost undermines your ability to be considered to be working as part of a team if you’re not also socialising with people in the pub on a Friday lunchtime. That kind of thing and I’ve found it very difficult to sustain in jobs where this, this element of whether or not you’re socialising with people seems to come into it. That’s just one example. 

 

People irritate Martin who prefers his own company.

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Age at interview: 16
Sex: Male
Age at diagnosis: 12
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Are you quite happy to sort of hang out on your own?
 
Yes, I’ve always preferred me own company. People irritate me.
 
In what ways do they irritate you?
 
Just everything they do; breathe, talk, get in your way in the middle of bloody ASDA, look at yer.
 
So how would you describe having Asperger's Syndrome to somebody who didn’t know what it was?
 
It’s like being a normal person really; it’s just that you’re more interesting. You don’t get on as well with people. That’s basically how I’d describe it.
 
 

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

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

 

Peter describes how he will walk out of the room when Myrtle is talking not realising there is...

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Age at interview: 83
Sex: Male
Age at diagnosis: 80
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I am perfectly content put it that way to sit and read what interests me and forget there is anybody around. Myrtle says I sit there and I might as well be in a library where nobody is allowed to talk because I can sit and not say anything. Or that she will say something and it will just, you know bounce off, I won’t react to it. Or I think when we are talking that whatever she had to say she has finished and I will walk out not realising that there is a lot more that should be said. I am beginning to realise that but throughout my life up to now I hadn’t really thought of that. I’ve just felt, well I want to go and do this, so what. And I have had very little patience with say, people who haven’t had to …as Myrtle says I have been extremely lucky in my vocation and able to absorb things easily, who haven’t got my knowledge or experience and education and I sort of feel well why should I bother with you.

Last reviewed July 2016.
Last updated July 2016.

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