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.

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 oclock is bath time, 9 oclock 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 oclock and go to bed at 10 oclock 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.

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.

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.

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 oclock 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 Im 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.