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Life on the Autism Spectrum

Making friends, social life & autism

People on the autism spectrum have a range of abilities and difficulties. Being on the spectrum is a not static however; people change as they grow older, learn different ways of managing everyday life, develop new skills and so on. This can be independently or with the support of family or paid carers. 
 
“And of course I developed an awful lot of strategies”
Developing strategies was something many people talked about. For some people, this involved forcing themselves to go into situations they knew they would find difficult. For Luke, this involved going to gigs or different pubs and for Gail, it involved working in health care because she knew she would find it difficult talking to patients. Russell, who worried obsessively about things going wrong, made sure he had done everything he should have done, like taking his keys and locking his front door. While he was aware there were things he could not control, like “earthquakes and tidal waves” he focused on the things that he could. 
 

Ian doesn't let anything bother him anymore.

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Age at interview: 22
Sex: Male
Age at diagnosis: 8
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Are you still anxious about things now?
 
No actually I don’t think. As I said I don’t let anything bother me now. I just said to myself you know, whatever happens it won’t bother me now. I just say that; drill that into my head, because I know, because I know what I’m like. I just start, I get anxious and I’ll stop eating and I’ll be sick every day, you know, and I know that’s what happens to me when I get really anxious. Anxiety attacks they’re called. So I make myself not worry about anything.
 
“When I talk to people now, I immediately ask them a certain amount of questions”
A few people talked about the attention they paid to interactions with others as they tried to learn to socialise better. As Paul said, “I have to think about what I have to say first; pre-scripting things in your mind and then saying it. That’s kind of how I cope.” Simon always asks people a lot of questions and then replays the conversation in his mind later, working out what people liked or disliked about the conversation. 

 

Margaret describes how Daniel has learnt some responses and he says things because he thinks it's...

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Sex: Male
Age at diagnosis: 11
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I think Daniel’s responses are something he has either heard or he has seen or he has picked up somewhere. Quite often Daniel will say things that I know I have said to him, and he will be repeating them to somebody else, perhaps in a different situation but it is like a learnt response and sometimes I think it is a case of he chooses to say that, because he thinks that is what he should say rather than it being a natural response. So the theory of mind issue can be quite confusing because although he seems to know what it is all about, in reality and in practice it is not quite that easy, and often I look at him, and we are having a discussion and I am thinking you don’t have a clue. You really do not know and he insists he does because if he saw it on paper he could work it out. If somebody read out the story, he knows the answer. But living it, and putting it into practice are totally two different things.
 
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Richard describes, while he has learnt some body language over the past two years, 'I don't...

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Age at interview: 58
Sex: Male
Age at diagnosis: 51
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One thing I learned quite early on was about eye contact. Now I never used to do eye contact - Aspies don’t - because I never saw a need for it. When I read that most people do have a need for eye contact I trained myself to do it. Now I don’t necessarily get it right. I might give too much or too little, but I found I didn’t have any difficulty giving eye contact, whereas a lot of aspies find a lot of difficulty. Another thing was we read books about body language.
 
Richard' But I had got into some uncomfortable situations by giving entirely the wrong signals with body language and I studied the books. So I think now I don’t give entirely the wrong signals and I can read somebody else’s body language if I remember. I would have to remember and say, “Ah yes. I think that means such and such.” Rather than just forming an automatic impression the way that most people would. I don’t remember how long that took, that would have been the first year or two probably.
 
There was – things went a bit quiet again and more recently I felt that there was actually more I could do to develop myself. One of the…I started to look into this whole area of emotional contact again. The problem with emotional communication is in both directions or all directions. I can’t read my wife’s emotions, except on a very broad brush, happy, angry. I would have difficulty putting in the finesse of ways. And the same thing applies to my own. I don’t communicate own emotions usually because my emotions don’t communicate themselves to my mind. I know I have got emotions but I don’t explain them. And linked with that is the understanding that aspies don’t have empathy.
 
There has been quite a lot of debate on that, quite a lot on what is empathy anyway? That is still something of an open question. A definition has not really been agreed. But I came to the conclusion that it was not right for a husband and father not to have any empathy and that I would therefore work on learning to have empathy. If I can learn to read body language and to give body language, I mean I have to make an effort to do it, I decided that I could learn awareness of … awareness of emotions is one thing. I think empathy is another. Empathy, I understand, is to have feeling with somebody in their situation and that I believe is actually coming now. It looks like it is a much more difficult job but I certainly believe it is possible and I am developing that way which does lead to the conclusion that, or the assumption perhaps, some of the main factors of Aspergers can actually be overcome.

Other strategies talked about included getting out of the car and walking away when experiencing rage or aggression, or avoiding a particular course which had potential difficulties related to it. 

 

Simon has studied the art of conversation. He is learning ways of managing his emotions more...

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Age at interview: 22
Sex: Male
Age at diagnosis: 5
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And once they’re your friend, do you still monitor the conversations?
 
It becomes a little bit more relaxed, I will say that, yes. A little bit more relaxed, I don’t tend to do it as much. But I do tend to find out, what they’ve been up to most of the time straight away, and all I do is try and sort of feed in the information [laughs].
 
I, for example, for the weekend they all went out with their parents, went on holiday or something and then I try and feed out as much information about their holiday as possible for just being nosy I suppose, really. But it does become a bit more relaxed when I’ve made friends and stuff. I don’t tend to sort of monitor myself as much and stuff like that.
 
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 [laughs]. 
 
And also I wanted to bring up, because you mentioned earlier about your self harming. Is this a regular thing or is it just occasionally?
 
It’s occasionally when I’m frustrated, I can tend to do it. Yeah. If something, I mean most of the time it’s when it builds up I tend to do it. Like if something has built up over time, I tend to do it. You know, but yes, I’m dealing with it very slowly. I’m learning other ways sort of dealing with my emotions and stuff and I think that’s another key area. I think people can help. You know, talk to parents about how we deal with the emotional side and that. Because we do sometimes become quite violent and stuff, you know, and that’s obviously not very good, you know.
 
 

Steven describes how, although he has found strategies to help him fit in, life still feels like...

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Sex: Male
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So have you found strategies through your life trying to fit in? Is there short cuts?

You do find strategies. I mean people… it is like you learn things quite quickly anyway. A lot of the things might be broke if you don’t understand things anyway, you will devise some how, some kind of strategy to make something work. It is like if you were on an island and nobody spoke English and you were hungry, eventually, or if nobody spoke your language, no matter where you were, but if you were hungry you would somehow make yourself understood. Even if it is by only signing that you were hungry. Eventually you would do it. So strategies, yes, you do learn strategies from an early age I think and the problem is with people probably on the spectrum is that you have got a lot of information that you need to store away because you have to remember the strategies for those situations because it doesn’t come naturally so you have to pull that out of your little film cabinet that you have got in your head and play it quite quickly so you know what to do. It is not inherent really, so yes, there are lots of strategies I think that you learn. I think it just takes time.
 
I still do things now that probably annoy family members but I do things that I know with my partner I sometimes on come on, and I will say to her is everything okay because I can’t read her face and she will say that yes everything is okay. But if the tone is slightly different then it was yesterday, even though the answer is the same, then I feel that there is something wrong so I tend to pursue it to find out what is the matter but it is just that I can remember the tone exact and then it bothers me because it is a different tone the next day.
 
And I still make the same mistake even though I still well I might not ask. I always ask because I never know. I am never sure. So it is a bit of a loop and I can’t get out the loop you see. Yes.

It is back to awareness isn’t it really? It is an awful lot to expect a lot of people to be readily made to be made more aware, but a lot of it is the actual condition itself. Because I can’t … I can’t, I mean I knew you were coming today and I was getting slightly distressed, my hands were sweating and things, and it was because it was different. I didn’t know, you know, and I go through that most days like most people on the spectrum do. I mean and it will be like that in ten years, in twenty years time. It is never going to change. We might get used to a situation but it doesn’t mean to say that we particularly like it. Its … I don’t know whether you understand, whether it makes sense to you. I suppose it is like how did you feel when you went for your first interview ever? You know, if you can imagine that same interview like fifty times a day. And then you have got an idea of what it is like because … and then you get, you cover things up as well, because you do want to fit in and you do want to be like everybody else. So you, even if you don’t get things, you make it look like you do get things and then you are thinking of what it was that was said, because you want to find out ways so you carry that around in your head all day as well. As well as everything else, and yes, and then you get your overload.

While some people felt they were developing a greater self-understanding over time, a couple of people were finding life more difficult with age.
 

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

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Age at interview: 21
Sex: Male
Age at diagnosis: 12
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No. No. The older you get, the wiser you get, the more cautious you get. You become more aware. I mean if you’re a young child with autism, then you’re pretty much led everywhere. I wouldn’t, I wouldn’t compare it to a dog on a leash because that would just be comparing autistic children to dogs, which is not right, but you’re kind of taken everywhere and you don’t question it. You don’t question, you know, mummy why are we going in this store? What do you need to do here? Do you need some x? But the adult’s autistic mind grows more wary of the dangers that all these standard every day items, that need to be sorted can bring. I mean if you could go into your standard corner shop and get yourself a pint of milk, and all of a sudden somebody holds up the stock… the shop. I mean normally that doesn’t happen in anywhere but America because the government laws but you know, even if you walk into a normal shop, though most people don’t have that thought going through my head. Sometimes it does go into, into my head, that somebody’s about to hold up the store, you know, just going in for a pint of milk is quite… makes me a little bit anxious because what could happen is unknown. 

Some partners talked about the strategies they used and these are discussed in ‘Intimate Relationships’.

 

Last reviewed July 2016.
Last updated November 2010.

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