Bryan’ Yes, I think actually the difference is that it’s not common, I think, for people to actually approach you and say, You ought to be ashamed of yourself, you’ve got a son whos behaving peculiarl. They don’t do that, but you do sense a sort of withdrawal on occasion. People round about you think, Oh dear, what an odd famil, and sort of physically start to make more space around you and so on, and I’ve had a couple of experiences of that sort. [3 sec pause] But I mean, frankly they’re quite easy to deal with now. I think originally they weren’t.

How did you feel about them?

Bryan’ Angry I think.

And I know, it’s not happened to me, because I don’t so often have him alone, but my daughter has definitely had incidents when she’s been in the shopping precinct orI mean she told a story I think it was last year, when he was still in the pushchair, because again it was easier to get from A to B and they’d gone to the major town near here, and her husband wanted to exchange a pair of shoes or take them back. So she’d got the autistic one in the pushchair. She’d got the one whos the middle sibling who was walking. And I think she must have had the little girl also in a pushchair. And the father walked away from the pushchair with the shoes and the autistic one went into absolute meltdown, because he didn’t understand what was happening. Daddy was walking away. Terrible, terrible scene and my daughter said, You can’t imagine Mum how difficult it was, I’ve now got two children in a pushchair. One who is going absolutely ballistic And she said, And screaming She said, And then middle child is so totally distressed because of the autistic one having this major meltdown in a major shopping precinct and terribly distressed by all the people that are looking at them. And he’s saying, Everybody’s looking at us mummy.&rsquo

And my daughter saying, And everybody thinks I’m a bad mother, because at this stage, they don’t actually understand that I’ve got one whos very disabled, sitting in the pushchair And she said, And he’s frightened She said, I know exactly what’s going on. Now he’s frightened, because daddy’s walking away, he can’t understand why. So what’s that all what that’s all about And she said, I just want to scream at them really and say, you know, he’s suffering from autism. He’s frightened. It’ll be all right in a few minutes And she said, I just feel in those contexts so alone, and so despairing and so everything

And so she feels I think, she’s on a kind of mission to educate people about autism. So that when she, well we’ve been out and done a couple of talks together and she says to the people, When you see a mum in a supermarket, with a child throwing a complete hissy fit, don’t assume that this is bad parenting. Actually step back in your mind and think actually this child may have a disability and this poor mum is and perhaps what you could do is go and approach them and say, Is there anything I can do to help you Because that might be the nicest thing that you could do

But he when he’s out it seems to be that his brain really does get overload with what most people would find an average, ordinary stimulus and plus he can’t take instructions, which I found from my reading is fairly typical of one type of autism. it’s not that he’s stupid, I would say that wouldn’t I, but he does not seem to hear, or take in or retain what you’ve said if it’s an instruction. Now that sounds really weird. It sounds like a grandparent’s excuse.

A couple of weeks ago, we went down to the coast near Brighton and we were walking on the undercliff along by Saltdean and he just suddenly got obsessed that the cliff was going to fall on him and he just did, wouldn’t walk along this, this place because the cliffs were going to fall down, and I tried to say to him, Well look, they’ve been there for about ten thousand years, they will not fall down today Then you see little bits of chalk on the ground and you think ooh maybe he’s right [laughs]. And it, it took a long time to, to calm him on that. A long time just to sit. We eventually sat down and talked about it and then he got distracted and you know, then he started worrying about something else. Started worrying about other people’s dogs after that.

And I have to be on the alert and aware, and preferably calm the entire time. I can’t take my eyes off him at all. For one thing he may disappear, so I’ve got to know where he’s disappearing off to. And there’s many a time, obviously, that I lose the place in the bus queue and when our bus comes sometimes everybody else is in the queue in front of us again, and I can’t get on, and I have to wait another hour. That has happened.

I have to hunt for him, because we have arrangements, wherever we go anywhere, I have to say to him, Now if we get separated from each other, we’ll meet so and so If we go to ASDA we get separated from each other we’ll meet each other at the bench behind the checkout. But this doesn’t work and he agrees and he understands. But this doesn’t work out in practise.

And so that’s one reason I have to be alert all the time. Another is that I must stop him, if he’s got his foot on the wheel of the bus that is about to move off. Another is that if he picks up a conker or a pebble and skims it into the road which he knows not to do, and why. If they’re, he’ll immediately run into the road after it, and it won’t matter to him that there’s a lorry thundering towards him, and the driver has to slam on his brakes.

Moira’ Well he doesn’t hold conversations, you don’t hold conversations with [Grandson]. You ask questions and get an answer. But he’ll never volunteer anything. You don’t have an active conversation. it’s…but one thing he does know is his way round London underground. I never have to saywe change trains all over the place and he will find the route back. He knows exactly where he wants to go. I spend a lot of time in railways stations, looking at trains, and then find a different route back. But I don’t lead the way. I just follow. But I was there because [Grandson’s] vulnerable. Because he looks younger than his age, acts younger than his age, and we’ve always felt that he was very vulnerable.

Bryan’ Well [Grandson] has always been quite sure that the world loves him.

Moira’ Everybody loves him.

Bryan’ You know, there are no dangers in [Grandson’s] world at all, which is one of the dangers in his world, but he is totally unaware of that.

And I think, you know, I’ve been so lucky when I, that makes me feel sad for them because I’ve been so lucky as a parent. I’ve had such fun with my children and going off to visit grandparents and going out for the day and I have been able to say, Hey, it’s a great day. Let’s go for a picnic Let’s go so and so Let’s jump in the car Let’s jump on a train or let’s jump on a bus You know, and just maybe even going up, sometimesnbsp;

We lived in London when my children were little and we could just jump on the train and in ten minutes to fifteen minutes we could be in the middle of Trafalgar Square and feeding pigeons or just running round stupid, you know. Or nipping into look at favourite pictures of the National Gallery and these are all things that just are not, they can be very carefully planned and it’s not that my daughter and her husband are restricting the children’s access to things, but it becomes an overwhelming task. And it’s a task that they can rarely all do together. So they never share together, parents, they’re always having to tell each other about those wonderful moments that you can have with your children and let’s [tears in voice] its upsetting…as their mum, do you know what I mean?

I, on the whole I’ve been very touched really by the sort of care you get. I mean the Ada shop here is very near to some homes for people with learning disabilities. That’s near to where my daughter used to work. And I mean they’re always helpful, and when she used to go with the twins when they were smaller, and she could go out on her own, and perhaps she’d stop and have a coffee or something, they’d always bring the stuff over for her, because they sort of, you know, they twigged that and I think that supermarkets and places like that, it’s been in their interest hasn’t it, to be very helpful to disabled people so, I don’t find that difficult at all. I suspect we’re quite outspoken now though and I think if anybody any hassle we’d probably give them quite a bit of hassle back really.

To start with, yes you can be a bit embarrassed. One of the things that one of the boys doesn’t like doing, well they both like it, but one of them in particular, is he’d prefer not to have any clothes on at all really most of the time. But obviously he has to have clothes on when he goes out, but at home, you know, and he’s out in the garden without a top on. But I can remember taking him out in the pushchair, long before it was clear to everybody around, you know, that there was a problem and he just took his tee shirt off you know, five or six times and I put it back on again, and eventually I gave up. Now you don’t normally see children walking around stripped to the waist in England, in their pushchairs. And I can remember having people give me sort of have odd, give me odd looks, but you get a bit hardened to it, and my daughter said something the other day about, and I had it happen to me as well. Somebody said to us when they were getting quite large for pushchairs, Well bit big for a pushchair aren’t they Whereas, and because they don’t look as if there’s anything, and there isn’t anything the matter with their legs, I mean. So that was quite interesting really, but you just learn to look the other way.

I do also go out with them quite a lot during school holidays, or now they’re at home all the time, if they’re going on a bit of an outing, I’ll quite often go, because it really is, you can’t really take the two boys out in the car on your own. Even my daughter and son-in-law rarely do that now. Because they’re both quite a good size and you know, all the issues of going to the toilet, and just the safety on the roads and so on. We don’t really let their hands go when we’re out with them. We always hold on to their hands. I think it’s those kinds of things that in a way I do more of.

The other thing that I’ve done with them which is quite entertaining is since they were two, well ever since I knew they were autistic, probably before, is that little tune, the Grand Old Duke of York, and you lift your arms up and down, and so that’s six years I’ve been doing that. They still, they might just about say up. They will always do it with me. They like doing it with me. And just one day last week one of them actually let go of my hands, and was able to do a little bit of it on his own. But it’s a stunning example of the need for repetitive learning [laughter in voice] with them.