He has routines that he has to go through so one of his fears is disease, death, dying, so of a night time he is very reluctant to lie down and go to sleep. So I have to go through a one and a half hour to two hour routine with him to get him to lie down and that will involve an exact time when we have to go upstairs. He will have to sit by me. I will have to play a record for him, then I will have to play a record for me. He will then do his teeth. Then he will come back. When he is actually in the bed there is still a routine. I have to take his socks off after I have fluffed one pillow, not two pillows. He has to have everything positioned properly. He has a drink by his table that has to be in a particular place. If it is even a few centimetres off he moves it. And the whole room is like that; it might look like it is untidy but he knows where everything is and he knows he doesn’t want you moving it.

So he does that then he has to talk to you while he is lying on the bed. Then you have to stay upstairs while he is lying on the bed, because basically if he stopped breathing how would you know? But the fact that I would know anyway doesn’t occur to him. And even if you say to him, he doesn’t accept it. He thinks if I am in the next room then I can help him. So I have to stay there until I think he is asleep and he will often shout across conversations and I have to keep telling him not to talk. And this on a good day, this is when he is in school because when he is in school he is happy because he has got a very structured day.

He asked me can I have a timetable at home for everything, but you can’t because if change anything it causes major problems and I don’t want to live by a timetable. So you know I will try this… when I tried not to carry out his routine for putting him to bed or I have tried to reduce it or I have tried to alter the song because apparently he knows, I didn’t know, but we had to listen to Bohemian rhapsody 96 times before he could stop that song playing, not on one night, thank goodness, it was over 96 days, but if you try and alter anything he doesn’t sleep and he can get very tearful. Now if you do the routine you might be lucky, he might sleep all night.

It used to be hours, now it is about one and a half hours. If he has got a cold or anything, you get no sleep all night. But you know I am used to it now and I will continue to try and decrease it. But as you can imagine he doesn’t get invited for stay-overs. He doesn’t want anyone else staying over. It is not normal behaviour but it is normal for him. That is what he has to do to get to sleep, so I have to do it.

So I quickly drew a blank with services, so I thought if it is not there I am going to have to do it myself. So I I went to the local CVS, Council for Voluntary Services and said “I want to set up a group, can you help me? How would I do it? I put an advert in the paper and I said, “Do you have a child with Asperger’s. Would you like to meet to set up a group?” and about 40 people turned up. I got a shock because first of all I didn’t realise that … I was expecting people with children my age, the children’s age to turn up, but there were people who turned up who had adult children with Asperger’s who had no help either and then there were other people.

The majority of the people I would say wanted something for the children. They want help. They wanted a break. They wanted respite. They wanted the children to have friends. They wanted, you know, stuff for them, because they were really worried about the children and as carers often you are the last on the list. But I, with my background being social work I didn’t feel I could take on the children’s side of it because for a start you would have to have Child Protection Policies, you have to have police checks. It would be a big job.

What I wanted to do was start with the parents try and share information and I thought if we did that the children would be benefiting anyway and we need to know a lot more about how they are and feed it back to the schools and feed it back to the doctors and families and not let the parents feel that it is their fault, because it is no ones fault. I mean you get parents who come to the group who are looking for a reason ‘why did it happen to me?, ‘what caused it? Well I realised very quickly after I had the diagnosis for Joe, I didn’t care what caused it. I didn’t care at all. All I cared about was how was I going to get through the next day? How was he going to be the most he could be? And I thought he is clever he is not going to waste it.

I am going to make sure that doesn’t go to waste and I am going to tell him as soon as possible, when he wants to know, you know, I wouldn’t just tell him he had Asperger’s but as soon as it arose, I was going to tell him what Asperger’s is. I would be ready and then I will make sure that he doesn’t feel, although it is a disability, I didn’t want him to feel that he wasn’t able and at one point in our group we did have a discussion about disability and none of us liked the word. But of course most of us claim DLA for the children, so you are used to thinking in a disabled way. But we decided we liked the term differently able, because they are. They are very capable in a lot of ways, very undervalued in a lot of ways and then we wanted to concentrate on positive things, not just negative things because when you know children with Asperger’s – and I have known quite a few now, and adults – they can be very refreshing, completely loyal, refreshing, different side of seeing things and really good fun to be with as well. When you know what they are like.

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.

All the legislation talks about partnership with schools, but a lot of teachers I spoke to saw it as interference. Partnership seemed to be if you agreed with what the teachers were saying but if you gave them work, if you like, if you said to them for example, “I want a home school book. I need to know what is happening in school. Is he learning anything? Have there been any incidents?” it’s another job. Now teachers who want to help you are like gold and you know, and Joe was lucky, he had a couple of teachers who were like that. But you are never safe because when they move the next year you don’t know what that teachers going to be like. Some people, some teaches have been trained for years, some teachers have been trained for a short time. You can’t go by that. It is attitude. It is will they work with you? Will they work with the child? It is not even class sizes because we have got people who … here it is rural, we have got people who are in very small village schools who still can’t get any help, even when they are small class sizes because basically they don’t like the behaviour of the child and they can’t see past the behaviour of the child.

Now since I have been on the group I have been on committees, where I have seen teachers in a different role, headteachers. You get some headteachers who are absolutely dreading anybody with Asperger’s going into the classroom. And then you get teachers who learn what it is like. I mean in my own son’s school when he went to upper school when he was 13, I went to a parents evening. I spoke to his English teacher and she said to me, oh she said “When I heard I was getting three of them, in the class. I thought oh my goodness,” because the unit hadn’t been in the school very long and then three of boys, one of them including my son was good enough for English and she said, “I was really worried. I didn’t now what they would be doing. Whether they would be throwing chairs around the room. What they would be doing. And do you know,” she said, “I couldn’t believe it. They are the best well behaved boys in the class.”

I went to see the doctor. She had an assistant with her so I could talk to her and she would be working with Joe at the side and they were trying to get him to do some art work but within that whole assessment which was just over an hour, I think, an hour and a half. She said, “Oh he is clearly Asperger’s.” And I just wanted to jump up and kiss her because I thought, “Thank God for that.” I know … I thought it was Asperger’s after doing all the reading and thought, “Oh at last.” So I said to her, “Well what happens now?” And she said, “Well he has got Asperger’s , you know, go away think about it.” You know. I said, “Will you help me with the school because the school don’t believe there is anything wrong with me. They know he has got problems, but they haven’t got the right idea about him.” You know.

And she said, “Well go home, let it settle down and we will see him again in a month’s time or whatever.” And so that is what I did. But I was really, really happy. I rang everybody as soon as I got home. I felt like I had to prove that I wasn’t going mad, you know, people think that you are just making excuses. People think that you are not disciplinarian enough but one of the things that I really was glad about, I mean people have different views about smacking children and disciplining children and things, and I always really didn’t ever want to smack, but there were times when Joe was just like lying on the floor in the supermarket, because he wouldn’t come in, he didn’t like the lights, he didn’t like, there was lots of things, the noise, you just feel like smacking his legs or something but I didn’t obviously but I thought after that diagnosis thank goodness I didn’t do anything like that because the guilt of having punished him for doing something that he can’t help, I would have felt absolutely awful.

I mean I felt bad enough as it was because I didn’t know how to handle him, but then I thought well how would I know how to handle him? Babies aren’t born with instruction books. You don’t know how to look after them and I didn’t know anyone who had a child with Asperger’s. So you know as well as for Joe because I thought this is good now. He will get help. I also thought, “Now people will take me seriously. I can explain to them what Asperger’s is. I can explain to Joe what Asperger’s is. We can move forward now. I can’t wait to get my hand on all them services.” [laughs] So I really celebrated that night.

And that is how it started off really. But for a long time I was completely on my own. I was upset all the time, you know, sometimes he wouldn’t eat. I couldn’t take him to the park, anywhere, anywhere that you would take children that you think they would like, it was a disaster. You couldn’t have him with a group of children. Again like, in the local park there is like a wooden castle that you can climb up and it is quite big. It has got ropes on it and things like that. He would run up the rope and if anyone was in front of him he would pull them off to get to the top. He wouldn’t wait. And then I would come away from the park after about ten minutes. He would get told off and I would bring him straight back and then it went on like that for a long time.

He wouldn’t sleep, up six, seven times of a night; he was tireless, completely tireless. And I was exhausted and I ended up crying, you know, I ended up going to the doctors, I ended up asking for medication for me because I just didn’t know how to cope with it. I used to ring friends in [city] and say “Can you come down and help me of a weekend?” or you know, “Can you come and see what you think is wrong”. But you couldn’t even hug him; he didn’t want you to go anywhere near him. It was horrible really.

I think the best information comes from Tony Attwood. It is very clear. He is very parent-friendly. We have got a video in the group that we show quite often. It goes down basically the list of what the symptoms are and more importantly how you work with children with Asperger’s. A lot of books I have looked at on Asperger’s are academic or not really that interesting to be honest or useful, so I would say start with him. Ask as many people as you can about any services that are in the area. See if they are any good, if they are any good, use them. Look for support groups definitely. Look for email groups; there is lots of stuff on line, lots and lots of stuff. And one of the things I found useful was look for work by people who have got Asperger’s. I mean for example, you know my thought oh my God he is never going to learn anything he is you know… and then I quickly found out there is a Professor Temple Grandin in, I think it is, Canada who has got Asperger’s and I instantly felt well there is hope you know. So read what people with Asperger’s say and altogether you get there.

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.