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Life on the Autism Spectrum

Autism & the senses

Some people experienced strong sensory aversions, such as a dislike of being touched or of being kissed.  Some were hypersensitive to sounds, lights or smells.  They felt discomfort or were distracted if they were in a room with fluorescent lights or loud air conditioning units.  Some intensified sensory sensitivities could be pleasurable. One woman, for example, said that “patterns are beautiful and my vivid visualisations probably explain why I am good at maths and science and art and music and have a photographic memory”.

“Bright lights are quite, quite distracting”
Richard, for example, could tell with his fingers if a television had power on or could hear very high frequency noises that other people could not hear; a woman said that her children were amazed that she knew what they were doing because she was so sensitive to sounds.

 

Duncan says there are weird sensory things he doesn't like but he really likes shiny things.

Duncan says there are weird sensory things he doesn't like but he really likes shiny things.

Age at interview: 17
Sex: Male
Age at diagnosis: 13
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I have some weird sensory things that I don’t like. Like... like a music event, like, you know, the lights on the stage can’t be too bright, because it gives me headaches. I don’t know. If it is too loud, then I don’t know, I don’t really enjoy it or… as much, because I guess I like to be able to understand sort of what’s coming out of the speakers and it if is too loud then I am really concentrating on what is coming out and, you know, concentrating on trying to, I guess, not make it sound so loud and horrible. But I don’t know, it is really weird I guess.
 
I know I like shiny things for some reason. It is really weird. If I have like a shiny coin I try and keep it, or, you know, keep it shiny, or deliberately save it so put it in a bowl or something. It sounds really stupid but it is just one of those things. It is like, I guess it is, I don’t know, it is something to do with my concentration, if I see something shiny it is like … it is like, try and concentrate, you know doing something important like school work or course work, or you know. I am so confused. It is just like, I could be doing anything and you know the dog could come in and I would be just be distracted by the dog for the whole entire time I am supposed to be doing, you know, like an essay or something. If I have got to hand it in the next day and it is like a 2,000 word essay and I have done 200 words because the dog came in and I have been playing for the dog, with the dog for the last six hours. It is just like … I don’t know [laughs].
 

Catherine and Neil describe the problems Catherine has with sounds and lights distracting her...

Catherine and Neil describe the problems Catherine has with sounds and lights distracting her...

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Catherine: I think it is just good that we know now what we have both got, or what I have got because before it was just really difficult for someone to understand why you can’t deal with certain situations, why noises freak you out, why lights freak you out. Why just people in general, you know, it is not, you know, it is really hard for people who don’t know about it to understand how hard it is. I mean I would say a lot of people that we know, don’t really understand the extent of it. You know, they know that I have got problems with people, and I have got Asperger's but if they haven’t read into it loads, then they don’t really know, you know, why I can’t do certain things or why certain things, you know, really freak out or, you know, so I mean I have sensory problems mostly to do with noises or say if I am trying to talk to someone or trying to concentrate on something. I can’t have other noise. I can’t listen to music and do something else as well which …
Neil: Yes, but we just have to come to a compromise like okay shall I turn this down for a bit, or you know I am going to go in the other room, or, so it is not just say me just sitting in silence all the time because you can’t handle it.
Catherine: Otherwise he would be there with like the telly and stereo…
Neil: Yes.
Catherine: And reading and on the computer at the same time. And I am just like owwwwww ha ha …. [laughs]
Neil: … because obviously you have got to, you know I am not just going to just sit there with loads of things on just out of spite but at the same time…
Catherine: We have our own rooms quite understandably. I have my room, he has his room which we totally need. You know, it is like otherwise we would go insane. Yes, but I mean there is things like light as well. I can’t bear bright lights. You know, I have a real sensitivity to light, like electric light and I just cannot bear being under bright lights, so all the lights are really dim, but he hates being in dim light so, oh there is just this crazy situation of like trying to work out who goes where, where the light is.
Neil: It is, you know.
Catherine: We have to have uplighters in the main room, so that bright light isn’t shining right on me, and it has got like a dimmer switch so you can sort of change the lighting system. [both laugh] Yes. It is a bit crazy in our house really.
 

Russell finds lighting distracting.

Russell finds lighting distracting.

Age at interview: 21
Sex: Male
Age at diagnosis: 12
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Again I suppose what would be noticed by camera is that I’ve turned down the lights in here because they were quite blinding when I came in bright lights are quite, quite distracting, quite distracting. I mean it’s a beautiful summer’s day outside and the light is very off putting. I was coming in and the light was, I had to try and look away from the light but look where I’m going. So that was, that was interesting. Also, I can’t keep, keep myself from hearing the noise upstairs. But it’s just playing about in my ears, and that’s becoming quite distracting as well. 

 

Simon has passed his driving test and has learnt to try not to be distracted by the shapes and...

Simon has passed his driving test and has learnt to try not to be distracted by the shapes and...

Age at interview: 22
Sex: Male
Age at diagnosis: 5
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Well after I left college I learnt to drive.  And, yes, that’s another big step, hurdle, to sort of get over and that was, it was basically it was my decision really I wanted to learn to drive, because the trouble with, with working with animals, there’s a lot of travel involved, you have to drive everywhere. So I thought right I’ve got to learn to drive.  And so I got an instruct… you know, booked up for an instructor, lucky enough I had a friend of the family had this strong instructor who’s meant to be really, really good. So I had him, and it was brilliant, a really good driving instructor. Really laid back, understood my problems. He didn’t sort of, you know, he just wanted to understand a bit more, which was, was really strange, you know, well, he was a stranger at first and just wanted to know, you know, how it could affect my driving basically. And it can affect my driving, especially with sometimes the concentration side of it, because obviously with our… basically we have like a high sensitivity to things.
 
For example it can do with shapes, colours, and if we see like a road sign, we may look ‘oh that’s a nice road sign’ while we’re driving. Driving a car you’ve got to concentration on the road. Yes, that sometimes can happen, so you sort of have to really, really focus. And trying to focus on something that, you know, you just keep going with it really. But I had a really good instructor and sort of gave me advice and stuff, you know, helped to sort of… helped me out basically. And it went really well, and I passed my driving test, and got a car, yes.
 
These sensory issues had an impact on everyday life and some people couldn’t go into supermarkets or go out in the evening to parties or wedding receptions. Julie said that Tim was like “a startled rabbit” in ASDA and B&Q because the lights and acoustics were overwhelming. Tim found that this feeling was getting worse as he was growing older and this was partly what motivated him to seek a diagnosis.
 

Tim is not able to concentrate on driving and holding a conversation, and has some difficulties...

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Tim is not able to concentrate on driving and holding a conversation, and has some difficulties...

Age at interview: 39
Sex: Male
Age at diagnosis: 39
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Julie: It’s like when we go out in car, I have to drive, because if the kids are talking Tim can only cope with one thing at a time. If he’s driving then he’s driving. You know, he finds it difficult holding conversations with the radio on and background… You see I can have radio on, be talking to Tim in the back, kids next to me, driving. You know, I’m not stressed about it at all. But that would be an absolutely recipe for disaster for you wouldn’t it? So then he gets snappy and nasty and he shouts at the kids and they get upset and...
 
Tim: I can. I can cope for example with driving and holding a conversation with you. What I can’t cope with is trying to hold a conversation with you and having the stereo going at the same time. And it’s the same effect. I can cope with driving say with Jack in the car. Okay he’s rabbiting on at you, but I can’t cope with…
 
Julie: But sometimes as well we  find it difficult even when there’s just me and Tim in car, I always drive because he’s,   he’s got this strange idea of   sort of spatial awareness as well haven’t you.  He’ll think people are pulling out on him on roundabouts when they’re probably not and things like that. And that, I’ve got, my car if I’ve used the horn on my car twice in all the time I’ve had it it’s stretching it. Tim will use it two or three times on a daily basis. And I just think it comes across as quite an arrogant sort of driving. And
 
Tim: I do sometimes worry that things like the sensory side is getting a little bit worse. So like Julie says I can’t cope with going to Asda supermarket. It’s, you walk in, and like she said the immediate look, just as if startled rabbit. It’s because from a sensory perspective all I can hear is background noise and it literally swamps everything out. So the best way to describe it, is if you are sat next to TV playing white noise that’s all that you can hear, you’ve got somebody trying to hold a conversation with you and all you can hear is white noise from the TV.
 
Alex was diagnosed with sensory processing disorder which meant that she didn’t process speed and distance in the same way as most people.  This made crossing roads unaccompanied impossible for her.

“May is black and June is orange”
Some people talked about being synaesthetes. Synaesthesia is a joining together of senses that are usually experienced separately. For example, words are experienced as colours, shapes or smells.  This can be experienced positively or, sometimes negatively.  One woman said that daydreaming can become an exciting multi-sensory activity which is hard to resist during boring lessons.

 

Daniel describes having a 'global synaesthesia' in which the senses are all linked.

Daniel describes having a 'global synaesthesia' in which the senses are all linked.

Sex: Male
Age at diagnosis: 11
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Daniel: It is like I have got very good hearing, which means I can hear a lot of details and things, which really helps with my music. And constantly I have got rhythms going on in my head and stuff because there is Asperger's and stuff. 
Margaret: That drives me mad, because he is always tapping or moving his feet.
Daniel: That all used to help with the music and stuff which is really good as well. So it is sort of in a sense, like the really sensitive hearing, is horrible if I go, if we go to the supermarket or whatever. I mean I can control it now. But sometimes if I have got a headache of if like if I feel ill or anything in any way it is it is a case of it all goes out the window [laughs]
 
So sort of with sensitivity issues my idea of it is, it is like it is almost like global sinesthesia, so basically every single, every single sense is sort of linked to the other one so it is like if you smell something, you might see something or if you hear something, you might see something, or if you hear something you might smell something. You know, all those things which when you have got, when you are in such a busy place or something it is just like complete sort of brain overload which is, it can be really frightening, because it is sort of like being so good most of the time, it is like I am not used to it now. So when it does when I do off at the deep end [laughs] and have all these problems [child coughs] it is pretty scary because I can’t deal with it as well, because I am not used to it as much now. So it's quite scary with things like that.
 
Which I think really at least sort of 89% of the disability is those issues with sensitivities and things... But it is sort of... lost my track now [laughs] it has gone, yes. It will come back in a minute.
 

Steven's vision has improved since getting his coloured glass but his sense of smell has...

Steven's vision has improved since getting his coloured glass but his sense of smell has...

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Sensory issues. My hearing is quite sensitive. My little boy’s hearing is sensitive. It is like hyperacusis type, it kicks in lots of sounds do bother us. Metallic sounds I can’t stand. I don’t like metallic sounds. 
What do you mean by metallic sounds?
Pans the clanging type sounds that is really hard on your ear. And they make you jump. They are not nice. And they hurt. They actually do hurt, so yes, hearing is quite sensitive and sometimes it kicks in really a lot and sometimes it will not. So just by that alone you can imagine a conversation with like three people. Sometimes it is difficult when you can’t work out which of the three people if they are talking at once is actually talking to you. You know there might be two people have a conversation across the room and you are with one person, but you can’t decipher whether you are hearing the two people over the other side of the room because they are all at the same pitch. They are all at the same volume and that gets quite stressful. But I have now got these glasses on and it is not too bad. It is easier. I am saying it has cured it but it is a lot easier. Some noises are much more easy on my ear now I wear these glasses. Sounds strange that doesn’t it?
 
But I notice that my sense of smell has been heightened because of wearing them, so … I think that sums autism up really. It is the miswiring, we are all miswired aren’t we? I don’t think there is anything wrong with us, I think they have run out of red wire when they should have used green wire, but and one terminal might be missing but it is the only way I can describe it. I don’t think I am any different than you are. I mean we are like the usual same kind of things in general but it is just that some of us like some of them more then others and a lot more intensely. Yes intensely. 
What about your vision?
My vision is. I always, I have not long had these glasses and they have really opened a lot up to me really. I used to have glasses before hand and I always thought that my vision was corrected to what everybody… to the norm really what most people do see, but I was quite astounded really that it is nothing like, I can see things a bit more three dimensionally. I can see my partner's face a lot more clearer now then I have ever been able to see. That is I think all. I think it is called cross pagnosia. It is like face blindness, a form of that, but it’s just quite amazing really as to what I can see now. Hm. Things don’t move about that used to move about. Like type   some website pages and things. So I could do bits at a time before but I would stop because it would move about. And I can concentrate a lot more now. That is it. Vision is a funny thing though because I see quite a few things definitely I suppose. I mean my website. Oops that has come off. Does that matter. I use the number seven in my own website because I see that as being yellow. Which is why my .. the title of my website is all done in yellow because that is how I see it. And I see A as being red. I see M as being like a mucky green colour and then when I see that one I smell petrol as well so. I think it is just the senses mixed. But it doesn’t happen on everything though. So … does that happen to you?
No.
So you are not from the same planet as us then.
No. unfortunately, no!
 

Mary explains her synaesthesia.

Mary explains her synaesthesia.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Can you say a bit more about it about it being synaesthetic? 
 
Well months of the year in colour, you’re not in, it’s kind of, it’s always been a case, and it kind of goes down like that, and, I can actually visual all the months of the year.  Say May being black for example, and June being orange, it just stretches out.  And also numbers as well, going upwards, in a sort of time line. But it depends on which way I look at it. If I look backwards   they have different colours to if I look forwards. But it helped in history, learning history and dates and stuff. I mean it’s not just that, but I also just have things in a visual way in my mind. So, good for learning things like learning for exams and stuff because I mean when I’m in an exam how I learnt it was still in my mind and it’s all very visual way. Just kind of images. Like when I’m thinking like when I was doing the Second World War, and stuff and Germany and France and stuff I have a sort of particular map in my mind. It goes not like a normal map, like a map that you’d see, you know, like a sort of globe type map, it’s kind of just a completely different map, which probably has nothing. No relation to reality whatsoever. But it just kind of helps. So … I like that. 
 
A characteristic of autism is to rock or flap hands and this is often related to trying to manage sensory overload.
 

Alex explains her 'autistic' responses to some situations and why she tries to cover these up.

Alex explains her 'autistic' responses to some situations and why she tries to cover these up.

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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Why do you control your rocking and flapping?
 
Why do I... talking about controlling autistic behaviours. Because society stares at you and thinks you’re weird if you do hum and flap and rock, and watch Thomas the Tank Engine on DVD when you’re 20 odd years. So, it’s just easier to kind of like put up, just to hide it, to be quite honest which makes things easier. People don’t ask questions. People don’t look at you.   People don’t show an interest in you. You just blend in.
 
But you’d do that when you’re on your own would you?
 
Yes. I mean I can be autistic sometimes when I’m out it kind of like depends how stressed I am. And to what’s going on. Like if a fire alarm was to suddenly go off in a shop then the likelihood is that I would stick my hands over my ears and I would just leg it, so, obviously quite an autistic response. But as long as nothing went wrong then you kind of like control, and, but you can kind of like feel it bubbling up, and then like eventually it just has to come out.   I sometimes to compare it to like Tourette’s because you know, where they say, oh Tourettes, you know, they can’t stop it. I think with autism you can stop it to a degree, well some people can.   But eventually it’s got to come out, you just can’t hide it forever. So yes, I do autistic things sometimes.
 
So if you’re flapping, what … does it make feel you feel good or…?
 
I think, there’s different behaviours have different effects. It’s like the whole. I always say to people, have I ever said this to you. Hum. Go on hum.
 
Right now stick your fingers in your ears and do it. 
 
You see its sounds totally different doesn’t it?
 
R2' Yes.
 
Yes, and it kind of blocks out everything that’s going on. So if you, if you’re in a situation where too many people are talking or you can’t concentrate or you need to escape it, but you can’t physically run away, then stick your fingers in your ears and hum, blocks out whatever’s going on. You know, I mean I look at like videos of me as a child, and like oh quite typical people with autism often do things up here either side of their face, but it blocks out everything else you can see. So it takes away all the, the sensory stuff that overloads you. And so things like that, kind of like make the world easier to cope with I think, if that makes sense.
 

 

Last reviewed February 2020.
Last updated November 2010.

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