Brian’ Because of the way he is, and his set routine. I mean you know, that’s the main thing, is his set routine. And anything that changes that routine, this goes wrong and he just can’t cope with it.

Lucy’ Hm.

Brian’ When we go to see him, we’re lucky if we see him for about three or four minutes, because once we’ve said our hellos, he’s gone. He goes up to upstairs. And there he’ll stay until we leave.

Lucy’ don’t forget your bag.

Brian’ We’ve even, he’ll even come down, half way down the stairs to see if we’re leaving yet because we’re not part of his immediate

Lucy’ Well we areexcuse me, but we are part of his Saturday, we always go on a Saturday afternoon. We are part of Saturday’s routine. So we arrived about three and we always have to arrive with a bag with some a

Brian’ Presents.

Lucy’ A couple of books or something wrapped up, and he sees us coming through the window and gets all excited, laughing and smiling, and sitting down and waiting and the minute the door’s opened, if we chat, like you do don’t you when you’re in the hallway. You can hear from, from the sitting room, you can hear, Mm. Mm. Mm Where, you know, what about me?’ Sort of thing. So we have to take the bag in. He tolerates us there while he’s opening the presents, then he goes upstairs to his bedroom. And then as Brian’s just said, after a few minutes. We stay for a cup of tea, he knows we have a cup of tea, and then he will keep coming up and down the stairs.

Lucy’ Well I suppose, no, I was going to say I suspect we used to get, we probably would have got angry with [name], but I don’t think so, because we knew he, he couldn’t stop himself from doing it. It wasn’t a deliberate, I kind of, I assumed it was just his way, just his way of telling her to stop doing it. Whatever it was she was doing. Whereas I say other children would just say wouldn’t they, don’t want my coat on I don’t want my nappy changed And because he hadn’t got the words, he did it with his mouth and he used to scratch as well didn’t he? We worried for her.

Brian’ Oh yeah.

Lucy’ We really did.

Brian’ As he was getting bigger and stronger.

Lucy’ Yes.

Brian’ We did worry about her.

Lucy’ Yes, yes. It was… there again it seemed to be something we couldn’t do anything about soso frustrating.

And what did you know about autism at that time?

Lucy’ Nothing really. Nothing. Just what I’d seen on that programme. I hadn’t come across anybody else with an autistic child orit’s funny how that is, isn’t it? Something like that. You get a new car and you notice all the cars that are like yours

Brian’ [chuckles]

Lucy’ and things like that. So I suppose going back to the people that stare and everything it’s not their fault really. I mean it’s in your nature to look at something that’s happening but when people make a comment then that is different. Because you do want to say sorry you don’t know what you’re talking about.

And have you had experiences where people have commented?

Lucy’ Yes. Yes. That business on the, with the train. And I think, I’m trying to think. When we were down the town one day, he was in his buggy and he was kicking out. Can’t you stop that child from doing that No, not unless we tie his legs down And they just walk off. They don’t, don’t apologise, say, Oh sorry. You know, that wasn’t a fair thing to say And is usually people that don’t, just take in, they don’t take in the situation. They don’t, the whole thing, like I said before.

Brian’ Well they don’t know.

Lucy’ But they don’t look at what
Brian’ They don’t know, because they’ve had no experience of it. They don’t know.

Lucy’ Well I suppose that’s true.

Brian’ They don’t know.

Lucy’ Yes. Because I was going to say, because I know
Brian’ You can’t say that an autistic child is autistic because he does this, this, this and this, or doesn’t do this, this. There’s, there’s no rule.

Lucy’ No.

Brian’ at all.

Lucy’ No I was talking more about the way
Brian’ Yeah, but ordinary people
Lucy’ the child behaves.

Brian’ yeah but ordinary people don’t think of all the different types of autism.

Lucy’ No I expect they don’t. Well it doesn’t have to be autistic. I mean there are other
Brian’ Whereas someone may say, say to them, oh this child’s autistic and he’s doing things that [name] doesn’t even do. You know, I mean and then you say well this child is autistic. Well what’s the difference between us?

Lucy’ Well yes, this is why talk about the autistic spectrum isn’t it? I mean
Brian’ Well ordinary people don’t know that. We only learned about that since, you know, over the years.

Lucy’ Hm, yes.

Brian’ We sort of been informed about these things.

And what about the support that you’ve had. Have you been offered any support as grandparents?

Brian’ No.

Lucy’ No. Well we haven’t looked for any
Brian’ Well no I don’t think we need it.

Lucy’ in all honesty have we?

Brian’ We don’t need it.

You don’t need it?

Lucy’ I don’t think so.

Why do you think you don’t need it?

Brian’ We’re of the old school, you see.

Lucy’ Well I suppose because we think we get on with it.

Brian’ All these people say Oh, this traum and they have to be counselled and all the rest of it, but they’ve never happened in our time. And it doesn’t happen now. So I’m not really bothered. No. No. I don’t think there’s anything for grandparents. I don’t think they need it. Quite honestly. All we need to do is to be able to comfort the other people. Support. We pass on our support. We don’t need support, we pass it on. We give the family support.

Lucy’ Hm.

Brian’ As the old stages of the family, the old folks.

Brian:You know we’ve got videos of when he, when he was small you know.

Lucy: And he was perfectly normal.

Brian: Just a normal, ordinary child

Lucy:Little boy.

Brian:oing the, doing the things

Lucy:Yes.

Brian as normal children do

Lucy And his eyes changed, didn’t they Brian?

Brian:Yeah.

Lucy The way he looked at you?

Brian:Yeah.

What do you mean by that?

Lucy Not, well sort of a faraway look.

Brian:it was in, in the expression, his expression changed.

Lucy:Yes. You know, when you look into somebody’s eyes that have got a problem, you know, with their brain they, they’re not, as if they’re, you know, sometimes when you stare away into the distance and go a bit out of it if you like? That’s how he looked. That’s how his eyes were.

Brian:His expression doesn’t really change at all does it?

Lucy:No. No. It doesn’t. Except when, I mean when he smiles he’s beautiful. Yeah.