Having ‘special interests’, ‘specialist subjects’ or ‘must do’s’ is also a characteristic of autism. Some children’s special interests included tearing paper into tiny pieces, trains, computers, computer games, drawing, animals, counting down the time to particular events, and the weather (see ‘Activities’). These interests were, in some cases, the entire focus of the children’s lives and were sometimes related to sensory sensitivities.
Thomas the Tank engine consistently turned up in the parents’ stories we heard and some of the children watched the same DVD or the same part of an episode repeatedly.
Christine, a full time carer, lives with her partner and her son aged 27 and daughter aged 12. Ethnic background/nationality: White British.
But I mean I used to know, I mean some things were really serious and if people had listened to you at the time they would have realised how serious they were because when she… she wouldn’t sit down even watch telly. She just could not sit down. The only thing she would sit and watch was Thomas the Tank Engine and my dad had bought her it on a video when she was 3 and she used to rewind things on it. It was when he was coming in the station to a party and took the diesel when he was started off and moving his face and I would think isn’t it funny how she only watches that. Then when she was six we got the cartoon channel and you could not move her away from the telly. She was there from 8 o’clock in the morning until she went to bed and if you tried to move her away from that telly she was aggressive.
And she couldn’t tell which was real and what wasn’t real so like if Scooby Doo was on she would be that frightened I would have to stop her watching it because she has actually seen that it was real and really scary for her. But there would be say like a window in the corner on the picture and because it would be like a pine colour, it looked quite real, I mean even to me, and she would say, “Oh look at that mum that is a real window”. But because she didn’t think that that could still be a cartoon, it was all the same picture, do you see what I mean? So there would be things like that happened on the telly you would say, but you would know it would disturb her and you would say, “It is all right. That is not real. That is all right.” And she would say, “Well is that real?” “Oh yes, well that is real.” You know, so you had all them problems.
Age at interview:
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
He can recite every name of every dinosaur off the top of his head. Anything to do with dinosaurs, Dr Who or his other things that he is interested in, animals mainly, he is very, very knowledgeable about and he can concentrate quite well on those subjects. But generally speaking if you ask him what he has done, you know, at school or ask him what he has had for his lunch, he can’t tell you. I know a lot of children are like that. He finds it really, really difficult to concentrate and to hold his attention on anything really.
But dinosaurs etc…, well David Attenborough programmes, well he is there and he just loves them. And if he could have a curriculum based entirely around that I am sure he would be much more engaged and concentrate much better not that I am advocating an entirely segregated education but it would really help him. His year one teacher said she had never spent so much in a lesson time dealing with animals before, because she really tried to do that to help Robert through the year one and we were always quite pleased about that.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
She is quite obsessional. She has got quite a lot of different obsessions; the number three; washing her hands; how she showers; having the curtains closed. I have had to tape cardboard over the extractor fan in the bathroom. She feels that there are cameras trained on her and people watching her which a lot of these are quite common in Asperger's. Because individuals with Asperger's have the intelligence but they don’t have the understanding to reason those things out like we would so you know. Yes there are a lot of cameras, CCTV and that sort of thing but they are not trained on everybody, they are just there generally.
Many children needed routine to manage their everyday lives and any small change, for example, moving furniture around, could upset them. Changes in routine that were not planned could make life unpredictable and confuse the children. Like many other children on the autism spectrum, they preferred to have a fixed routine so that they knew what was going to happen each day. They also liked order in various aspects of their lives. One boy expected children to queue up in the same order outside the classroom while another planted spring bulbs in straight lines in his front garden.
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
But kind of what you have to do, well what I have to do with Arthur every day is let him know what is going to be happening the whole day, give him times, like he knows 8 o’clock is bath time, 9 o’clock is bedtime. And occasionally you know, to start off when you first start with things like that, you can’t have any flexibility around it. It has got to be that now, and that has got to go on until that is routine and then now though, I might say to Arthur, “Well yes, okay, it is Saturday night. So…” I can’t just say, “Okay its Saturday night, so you can go to bed later. Any time.” I say, “Okay it is Saturday night so now you can bath at 9 o’clock and go to bed at 10 o’clock and that he can deal with. You know. And especially when they are young, you can’t just like walk in the room and go, “Right, turn off the TV now. It is time to go.” You know I give him lots of preparation and that.
And it is always “Right at that time we are going out. We are going to the shops”. You know and then, “Right we have got half an hour…” And they also kind of find it kind of difficult to judge what they can do in half an hour. So you have to be quite specific. Like, “We have got half an hour and that programme you are watching is going to finish in fifteen minutes time. So if you start to watch another one you are going to have to leave it half way through.” You know, you have really got to let him know and before you go in into a new situation you need to let them know what to expect. It is like, “Right you are going to [support centre]. So and so is going to be there. You will know so and so. You won’t know these people but …” you know.
Of course it is not always possible to anticipate changes and this could be difficult for children and their parents. One mother described the build up to Christmas at school as the worst time of the year for children with autism because the routine changes so much with Christmas parties and plays.
Rosie, a retired nurse and artist, lives with her partner and youngest son Sam. She has four children aged 29,27,26 and 14. Ethnic background/nationality: White British.
So he doesn’t like change and if I go out at night for an unusual thing, he can’t understand it. He doesn’t like it. He won’t… it is not that he won’t accept that I have got to go out. He understands that. It is just that it is different and he gets really upset and we can’t leave him by himself because if he wanted to make himself something to eat. He could make himself something but then if he wanted to cook something. He would leave the cooker. Or he wouldn’t switch the kettle on or he has… in the last year he has probably nearly flooded the house three times where he has left taps on and hasn’t turned them off, you know, in the bathroom and in the kitchen. So for that reason he is not safe to be left so [cousin], she is my cousin, she comes, she will come round and baby sit but sometimes it upsets him.
And he would want to go to bed before I went out and so that is like if I went at 7, say for instance we were going to a concert, and it wasn’t in [town] and we would have to leave early and there have been times when I have done that. It is not very often but he would get really upset and he would normally cry and he would normally want to go to bed before I left which obviously upsets me. Even though he knows the people coming round, like if my mum and dad baby sit and he would know them but he wouldn’t want to see them. He would want to go to bed. It is almost like he wants to pretend that I haven’t gone out. He would want to go to bed before I went out. I haven’t been out for a long, long time when I have had to get a babysitter in, way before Christmas really.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
And since he could speak I have had all of this same repetitive stuff. Before he could speak I was just dragged out of bed, usually by my nose was his way of getting me up. And he used to drag me over straight into the kitchen by my nose and start yanking bowls around and you would have to get his cereal and it has to be the same thing and I have just made this silly mistake I suppose it feels like of trying to teach him to pour his own cereal. And to us, because he is physically not as dexterous as other kids and a lot of time children with autism don’t have mobility problems but Ben does for other reasons. So he has been slower to develop and he finds things manually a lot more difficult. So I have been teaching him to get a bowl out and pour his cereal into a bowl of cereal that he is allowed. But he is one, that, “How much, how many pieces of cornflake do you have?” So I would say, “So it is about flat.” “Well what if there is five more and it makes it a bit bumpy.” “Well squash it down a bit.” “Well what if that is not right and it goes down to …”
So then I ended up trying to score a line on the bowl and saying, “Just up to there.” So of course he is hysterical because it wasn’t absolutely even and then how much milk? And he says, “It says on the packet 20 grams of cereal. How do you know that up to that line is 20 grams of cereal?” And to pour the milk, “How do I know how many millilitres it has got to be.” So I have to get to stage where I have got to put out the night before a flat cup of cereal and a measure jug full of milk and put it on one side. So I have actually made myself an awful lot more work by trying to teach him. I mean from his point of view you know, for his self help he needs to learn to do it but the things that you think are simple just aren’t simple, although they are very basic things.
Bedtime routines were particularly important to many children - several parents described the lengthy routines they had go through before their children would go to sleep (see ‘Eating and sleeping’).
Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.
But as I say if he wakes, if he gets a question, regardless of what it is he will come inand wake me up and ask me it because he can’t go back to sleep until he has asked me it. He wouldn’t have a clock in his room for a long time because every minute is one nearer his death he says. So whatever you try and introduce that meets one of his obsessions it is rejected. Eventually I got him to have the clock but it took months until I could have a clock and then it couldn’t tick, it couldn’t be a noise, but I finally got a clock. I said to him right this is what time 7 o’clock you need to get up. He can’t get himself up, he will lie in bed. If he hasn’t a question he will lie in bed. I have to get up at 6.50 exactly because he likes the ten minutes to hear me walking round before he will get out the bed. But I have to tell him it is 6.50 and that I’m up.
So that is one thing, that is one thing that you have to go through. But I found out at some point that he has no idea of time, no concept of time. He doesn’t feel the difference between five minutes and an hour. If I go out of a night he has no idea how long it is that I have gone even looking at a clock. He can’t tell the time with hands. He can tell it with numbers but not with hands so it panics him so in some ways I can see why he needs reassurance all the time about time. But it is very demanding and that is what I am left with after a lot worse.