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Life on the Autism Spectrum

Autism & feeling scared, worried or angry

Fears and anxieties are common among people on the spectrum. The people we spoke with discussed a range of fears including fire, answering the phone, terrorist attacks, germs, going out and of not doing something that would have serious consequences. These fears could dominate people’s lives at times.
 
 

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

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Age at interview: 21
Sex: Male
Age at diagnosis: 12
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Yes, it’s, I suppose that comes down to being too aware of the surroundings. Whatever’s happening it will catch my attention. There’s no may about it. It will. So sometimes when things get too much I kind of go off into, into a quiet corner where I’m in control of everything. When I’m in control of everything then I feel fine, it makes me feel less anxious, you know, I could go away, go away and play some video games, I know the ins and out of the rules and regulations of all that. I sit down and I can immerse myself in such activities for hours upon hours, with little or no regard to what’s going on in the rest of the world. I mean the world could just pass me by, not literally, I mean all the world doesn’t pass me by, but you know, what I mean. But you know, it’s, that is kind of a, that’s well that’s a safety net I suppose. If I kind of reside in there, then there will be nothing that can harm me, nothing that can, you know, make me anxious or worried or angry.

 

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

 

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

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

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

 

 

 

 

Mary stopped travelling after the London bombing attacks. Some of her phobias have lessened as...

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So it’s really once I left school and when I was at university, and the OCD, it was OCD an obsession kind of thing, but it’s kind of more washing hands and because I get very extreme if there’s something on the news, and I immediately apply it to me, and I won’t, all these phobias started to develop so I stopped travelling, you know, after the London terrorist attacks. I stopped travelling because I thought, well if there’s a bomb on a train, sorry on a bus, it could happen on a train. So I just got really scared and just… And because I’m just phobic anyway, and when I was at school like with things like food technology, I took that very literally as well. So, just be, you know, obsessed with food hygiene to a kind of extreme extent, and just get it out of control. I think that just got more extreme. 

And also when I started school I was really scared of the fire alarm, because I thought it meant the school was going to burn down. So I was screaming and screaming and refused to go to school for a while. So, and as I say I got really obsessed about the age of ten with washing my hands all the time, but yes, and when I started secondary school that actually disappeared strangely enough. And I don’t know why it was, maybe because when I first had a friend I felt more secure. I don’t know why.

 

 

A psychologist is helping Alex to overcome her fear of germs which has made her feel she could...

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Age at interview: 28
Sex: Female
Age at diagnosis: 3
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Oh definitely, definitely. I would go to work tomorrow if someone could give me a job that, well it’s not really the job meeting my needs, it’s more the kind of like getting to and from the job, and obviously most jobs you get things like lunch breaks and stuff like that. So it would be having help to structure my time. And obviously it’s planning for the unexpected. Like a fire alarm going off or things like that and I have an absolute ridiculous fear of getting ill and germs and stuff like that. So being in like an office with lots of being coughing and air condition is kind of like my idea of hell. It’s just a germ factory really isn’t it?
 
Is this a fear you have had for a long while?
 
Yes, I have a really great psychologist who’s trying to get me over my fear. She’s been trying to get me over my fear for four years. We’re getting there slowly. I do more now than I used to do and I wash my hands less and stuff like that, but yes, I’ve still got kind of little rules and stuff. A bit OCDish I guess. Very OCDish.
 
What sort of rules?
 
Things like, I don’t know, you’re not too bad now, you’ve, you’ve kind of like been accepted. But when my PA first started and stuff, if she had like a cup of tea or something then I’d have to leave that cup for like 24 hours so that any germs from her hands that had gone onto it could die before I then had to wash it up and disinfect it. And you know, Milton [disinfectant] is my best friend and things like that. But now I kind of like, just, you kind of like fit in now. You can drink out of my cups.
 
 

Christopher prefers to stay home as he finds going out scary.

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Age at interview: 17
Sex: Male
Age at diagnosis: 14
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But you know, you know, I’ve had bad experiences with people my own age, so I don’t, I don’t like to be round them. I don’t like to go out where I could get hurt. This is where I’m safe. This is where I like to stay.
 
So would you go out at all at the moment?
 
I would. But I’d only do it if, for example, I was with my mum. Because I have to face facts, if someone ever tried to attack us, it would be her who would end up defending us, not me. I’m not good in that kind of situation. 
 
Does it bother you that you can’t really go out?
 
I suppose it does. But then it doesn’t. I like to be on my own. I like, you know, solitude. But at the same time I ache for companionship, saying that actually sounds like euphemism. I ache, I want, I’d like friends, but I don’t want friends. Is very confusing.
 
 

Stephen describes how he is scared of wild animals, the heavy downpour of rain and earthquakes.

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Age at interview: 33
Sex: Male
Age at diagnosis: 5
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What sort of things don’t you like doing?
 I don’t like some cleaning down the kitchen because its gets sometimes a bit tired and boring because it means I have to do it there is some things, [friend] ask me to help to do some cleaning down the cookers and helping do some dishes because I wouldn’t mind doing it sometimes [laughs].
And is there anything else you don’t like?
I don’t like   wild animals because they make me scared. So I don’t like earthquakes being hit and they make themselves scary. And I don’t want to be everywhere including around the world.
Is that all wild animals or just big ones?
Just big ones. And I don’t like the horrible weather, lightning flashes and horrible noise thunder because I don’t like the heavy downpour of rain.
So would you stay at home if there was a thunderstorm?
Yes. I stayed at home. And I was sleeping at night, there’s a… I heard a rumble of thunder and I hate that lightning flash and sometimes I get scared.
Is that why you drew the picture of the earth quake?
Yes. I drew them sometimes, the earthquake. I watched the earth quake back in the seventies. It was very frightening and exciting because I don’t want it to be frightened.
 

Gavin still thinks about a pencil he dropped down the drain while at primary school.

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Age at interview: 28
Sex: Male
Age at diagnosis: 14
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I dropped a pencil down the sink at [school].

[teacher] says I can’t find it, it’s an old buildings. I can’t..

if I dropped it there [5 sec pause] she did say if I dropped it and then I can’t find the old buildings.

Some people had learnt to manage some of their fears and anxieties by forcing themselves to confront particular situations, like crowded gigs, even though they knew they would hate it. A few recalled a paralysing fear of putting their hand up to answer questions in class. For example: "It was sort of, I don’t want to call it paranoia, but I guess it was something like that stopped me. It was sort of the fear, feeling that someone was going to say something about the question being silly or the question wasting time or it being stupid or whatever."
 
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Peter has always been concerned about being blamed for things.

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Age at interview: 33
Sex: Male
Age at diagnosis: 30
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And I couldn’t put the cooker back. So I went round and I was like that and the chef is like, “Are you okay?” And I went. I did what I did at school, if the teacher said, “Are you stuck?” or anything? I was like, “Oh no. I am fine,” because I was always scared that people would think I was an idiot if everyone else knew the question. And so I was like, “No, no, I am fine.” But I was then staring out of the window for the rest of the window just writing anything down if a teacher came.
 

Because that is another thing, if something breaks or something, say in the house or at work or something. I am scared to tell people, because I feel like they will blame me, even though if it is an accident... Even now, I am still a bit, when something has happened like the cold tap in work came off in my hand. And I put it back on but I never told anyone. And another guy I work with said to the chef, “Oh the cold tap is broken. It came off in my hand.” And she went, “Aye, no problem. I will just get someone in to fix it.” But I was scared that she would say, “This is your fault.” ...So those are my biggest concerns still about…

One woman said she spent her life frightened of having her children taken away from her because “I was a bad mother because I was relying on them so much”.
 
Some people reflected on their anxieties and tried to make sense of them.
 

Mary thinks some people with Asperger syndrome come across as shy but they aren't shy.

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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The school never, I mean in spite of the fact that I didn’t have any friends, despite the fact that I was disruptive in class, I had all these issues. I don’t think the school really knew the extent of them. The school didn’t know about the OCD problems, and so that was very much kept secret. And the school didn’t know about my extreme interests, because that was kept secret so…. Maybe the school just saw me as kind of quite a… I mean I was often called shy. Although I’m not shy, which is kind of rather strange because I’m not shy at all. I think it’s more the anxiety but it’s not related to shyness. It’s a different type of anxiety. Because I think many people with Asperger's might come across as shy, and some of them are shy, but that’s like a personality trait that is independent of whether someone has Asperger's or not, then all people with Asperger's are shy, but they might come across as shy. 

Anger and Frustration
Several people talked about anger and frustration and discussed how difficult they found it to manage their tempers. One wife described her husband as "a frightening person, partly because he is enormously well informed… He uses one-upmanship and I think he has, he despises those who have not had his very great advantages.” She described him having terrible tantrums like “a five year old”; he had recently had his driving licence taken away after losing his temper in a “mild road rage” incident.
 

Peter lost his licence after taking his key out of the ignition and waiting when it was his right...

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Age at interview: 83
Sex: Male
Age at diagnosis: 80
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Peter' I feel, I wouldn’t say remorse, that is perhaps the wrong word, I feel like these are things I needn’t have done and life could have been a lot better if I had recognized that these are things, okay, Asperger's it is not an illness, but it is …

Myrtle' An affliction.

Peter' An affliction or something. There are ways and means of coping with it. Instead of just, you know, continuing and doing things, and believing that whatever you did was right. That this was my right to do this.

Myrtle' This is a word he uses a lot. It is my right.

Peter' You know when it comes to driving. I’ve lost my licence now for it, but that I couldn’t understand, couldn’t accept that somebody, for instance would not wait when there was an obstruction on their side of the road. To me, it was my right of way come what may and …

Myrtle' There would be an impasse.

Peter' And I would sort of not have an impact but I could take the key out of ignition and put it on the dashboard and sit like this and just wait for what happened. I’d think well you are wrong; you’d better get out of the way. And I mean that’s behaviour you can’t continue. I realise that now, but this is only partly through counselling, partly through reading about it, and partly through Myrtle having infinite patience with me and with telling me you know calm down.

 

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

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Age at interview: 21
Sex: Male
Age at diagnosis: 12
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And that was your experience at university. Was it positive?
 
It was quite good, yes, I’m quite sure it was a bit high pressure. You know, the lectures were fairly high pressure, I couldn’t keep up with the poor writing speed. And you know, everybody would go out and be social, but I couldn’t do that really. And in the final year I was living with housemates. And at points I actually scared them, so I went to see the doctor about that and got put on antidepressants and hey ho I was on the way back to being a happy chappy human being.
 
In what way did you scare them?
 
Bursts of anger, use of quite a lot of expletives and just general hiding from social situations. I mean if they were in the midst of doing something, I’d get out the… I mean if they were sitting down in their front room watching the television, I’d be upstairs fiddling about on the computer, because it just didn’t interest me, being around... because they were completely different. I was a male, accounting and finance student and all three of them were female English students, second year. So we were, we were on completely different levels, which was pretty much doomed from the start.
 
 

John has damaged the property he rents.

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Age at interview: 47
Sex: Male
Age at diagnosis: 45
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But I think the biggest difficulty, in, in the domestic environment is the sort of irritability that you get as part of the Asperger's condition and obviously that can affect neighbours. It can affect even the fabric of the property so… but those are real, real difficulties and I find I currently live in a housing association property where it’s professionally managed and somehow the landlord copes with those difficulties. But I think in a private rented situation it would be very much more difficult.
 
And when you say that the irritability affects property …
 
Yes.
 
Can you give me an example of that?
 
Well yes, I mean literally, I mean I get, not trapped, but I do suffer from a certain degree of obsessional thinking about you know, various conflicts that I’ve had with people, and you know, if you keep mulling ideas not particularly productively and somehow that raises your, your hackles, then I can end up compulsively punching a wall, and that, you know, and damaging the plaster work, things, things of that kind which obviously need repairing you know, so, things on that scale.
 
 

Ian is sensitive to the tone of voice people use with him and can get very angry, particularly...

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Age at interview: 22
Sex: Male
Age at diagnosis: 8
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Well, usually the fears I fear is… I don’t really have much of a fear. I think when I get angry it’s like a fear that I don’t know how to handle it. If my dad sometimes snaps at me sometimes, you know, I can get really, really aggressive with him, you know, and it’s because I don’t know how to handle it. Yeah. And obviously he finds it hard to calm me down. So I always go to my mum to explain things better, because he tries his best, I don’t think he’s as good as my mum is in a way, in that respect. I think it’s a man thing isn’t it? I don’t know.
 
So you sort of get really angry?
 
Yes. It’s his tone of voice I think, because probably it’s the way, I think tone of voices do make me think that they’re being aggressive towards me and I start to defend myself and have a go back. And higher authority I think, I’ve always had problems with. I think I always will. So like, if teacher used to shout at me at school I used to, I used to really have a go back. And I couldn’t understand why no one else did when they got shouted at. I thought to myself, ‘are you a bunch of wusses or something?’ you know, ‘stand up for yourself’. Because obviously… Mum said the thing is, they that if it’s wrong. You know what I mean, I thought it’s like okay either way, you know. So I’ve always been like that, yeah. So …yes, and no, funny answer [laughs].
 
In addition to losing their tempers, a few people talked about being aggressive either towards themselves or other people. One person said, “I’ve had urges before to do things to people like that I wouldn’t normally do. It’s not in my nature to do like you know” and talked about his fear of doing something violent to another person. He reflected on how “the thing is I’ll feel awful. It’s not in my nature to be, to murder anyone. You know, it’s just, I think it’s just the anger can get that much sometimes that I can’t control it.
 

Simon talks about self harm and feeling aggressive.

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Age at interview: 22
Sex: Male
Age at diagnosis: 5
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But yes, it’s, it’s been really, really hard sometimes, especially to do with the emotions and that. I have to say, my emotions, they are a little over exaggerated. For example if I’m angry about something I may be completely aggressive towards people. Just because I’m angry, because my emotion of anger’s just over the roof. It’s not like normal anger where you get angry and cross with something, mine just makes me go mad basically. I just… and sometimes this can cause me to self harm. I will admit I do tend to hit myself sometimes. I don’t mean to do it, but it’s sort of a form, the way my emotions just become so confined, and once again because we’re unable to talk to people about it, it just builds up and builds until eventually it just bang, it explodes and some people hit themselves, I hit myself, which, you know, I don’t like to admit it, but you know I have to be honest about things like that [small laugh].
 
And other people in some cases with, you know, with autistic can sometimes hurt other people. Lash out at them, and sometimes we do this, because that person, in some case, has either, the fault for us getting upset about it or angry over with, so because we can’t exactly go over and go, “Look, you really annoyed me. I didn’t like that. Can you not do that again?” We may go over and just whack, hit them. It’s very simplistic isn’t it? But it’s not a good way of going about it. 
 
But that’s how, you know, because it’s, because we need to see our emotions, because we feel that ‘yeah, that’s showing that we are angry’ [laughs]. But the person on the receiving end may not understand that and this sometimes can, especially at school, especially at school, you know, if someone annoys you at school, and bang. Teacher' “What did you do that for?” And of course, once again because I can’t talk that well or socialise that well, because of being autistic and that, I just get told off and put into a room, isolated, and there have no reason why I’ve done that, whatsoever.
 
 

Last reviewed July 2016.
Last updated November 2010.

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