And you mentioned having respite care. Have you had respite all the way along?

We used to get an hour a week, sort of four hours a month probably from quite early on. I think it was after Adam was diagnosed as well though, so we were just getting four hours a month which we have had increased to two now.

Two hours…?

Two hours a month… a week, yes, sorry two hours a week. Yes. So what I have been sort of tending to do is use those when my husband has been away working or if I may be go out for a evening or something then he has somebody to help him. But I think our main problem is we weren’t actually using those hours to go out together. So… I would strongly recommend if you get any respite care go out with your other half and don’t let that slip, because that was our problem.

Do you have direct payments or..?

We did look at direct payments and found it all a bit confusing with how you work out all the sort of monetary side of it. I’ve got people that would come and babysit for me but we actually use somebody from Social Services and it is somebody the boys … she actually works at the school where the boys go to as well and so she has known them for sort of five years, so I know she can cope. We could use two people at the same time as well which is still …

Is that within the two hours?

Yes, yes, because we have got the two boys, but generally [person] who comes like, should I have said her name. Is that all right? [person] who comes out to us she is absolutely brilliant and she can deal with both boys at the same time. And at first I was thinking God it is like having a sergeant major in your house but she has actually taught me a lot as well, and taught me that I do have to be very firm with routines and she is fantastic. She can get Adam to brush his teeth no bother, whereas I have got him in a headlock and really struggling with him, sort of half sitting on him, headlock and brushing his teeth and she says to Adam, “Open your mouth”. And he is brushing them for her. So I would love it if she could move in with us. But …

Is two hours a week enough? Or would you like more?

I suppose it is. Because I would like more, I suppose obviously everybody would like more wouldn’t they, but I tend to bank it up and the nice thing about [person] as well is if I know that I am on my own with them and if Im having a really, really bad time with them I can actually ring her up and shes pretty good at just coming out and sort of coming to me at the last minute as well and I just try and sort work my hours and try and bank some up so I’ve always got a few in hand.

I have a carer for ten hours a week, who takes… He is a male carer, a young man of 24 who is very like him, but not diagnosed, but like him in the sense that he is intelligent, he shares the same interests, he is patient and calm and he facilitates Joseph’s personal development. That has been a godsend, because not only has he got someone to talk with for hours on end about the fine details of something which I have no idea about, but he has got a male, he has got a male to talk about male things with, he has got a male to go out with and he has got, I don’t, he doesn’t describe it as friends, he describes the people he knows as acquaintances. He is happy, he is relaxed and he is safe. And the carer has come out of the scheme for direct payments for children with disabilities.

I get three hours a fortnight. I get it from the council, from Social Services. Again that is a bit of a sore point, because I imagined that you would ring up a number and say ‘can I have respite? but you don’t, you have got to get a social worker. You have got to then go through the whole family history thing and answer millions of questions and at the end of it, you might get respite. But the respite you want is what they can give you rather than what you might need. So say for instance if I wanted to go out of a night I couldn’t. I can have respite once a fortnight for three hours on a Saturday at a certain time. So I say yes, but, then I have got to rely on the person being okay; with Asperger’s again he can’t deal with changes so maybe two, three people at the most I can cope with for him.

If he doesn’t like them he won’t go out with them. So, they haven’t got a lot of respite workers but they are trained which is good. When they have used sessional people sometimes they haven’t even known what Asperger’s is so I just have to send them away again, because Joe won’t go out with them and so it is patchy, very patchy. Sometimes I have gone weeks without what I was entitled to because there isn’t anybody to do it. They are either off sick or the team is too small or they have advertised for the jobs, or you know, it just doesn’t happen.

But I know people who have direct payments but again you have got to find someone, the system is really cumbersome, it is a lot of paperwork, getting different bank accounts. What I would like is a system that works controlled by the Local Authority trained by the Local Authority. I don’t want the responsibility of having to having to employ someone, having to pay wages, as well as being the carer. I want them to do it. I want them to find the right person and then give us a choice of when we could have them.

So yes I get respite but I use it for, it is not for me, it is for him. I use it for amusing him, playing chess with him or taking him off for a walk or whatever he feels like doing, trying to continue with the swimming because I can’t swim. But I have to take what I can get really. For me personally, for my needs, no, because what I do when he has got somebody is I go to the supermarket without him or I pay bills or do something like that.

When I was working it was much harder. I would be running round trying to do everything in three hours. Now I am not working it is easier but it is still not a lot, three hours a fortnight.

You talked about him growing older and puberty. Were you offered any support when he behaviour became challenging?

I suppose I better be totally honest and say that we did get a bit more support than what we had previously because it is a bit like, this will be the same with any Council or any authority in the country, when a child is okay they don’t need to do anything do you, they are okay, they are not a problem. The minute they become a problem then you have to then intervene and that is what happened with Andrew. He developed this challenging behaviour so the social worker came on the scene so there was like a little bit more respite offered you know. I mean I am only talking about like four hours a fortnight they would take him out and you had four hours to yourself, you know, to do something. Things like that.

But that is the main, I think that is the main bugbear for parents of autistic children is respite support because you do need, you have got to a have a rest from him, you know, I am not asking like, Andrew needs constant support. Other kids who are Asperger’s can have a conversation with you, you will (probably?) see them afterwards, and probably interview them and they will chat to you and you think some people say what is wrong with him, but you know that there is something because their behaviour does display itself later on. But no, we got a bit more support but you have to fight for it, you know, you have to make out like he is the Tasmanian devil, the child, you have got make out he is awful and because otherwise you won’t anywhere. You won’t get the support you need, you know and that is just for a little three or four hours a week you know, so … yes. I have got to be honest we did get a more support but it is nothing to start putting on the front page of The Times, you know so….