Nicki’ The good thing about it is, there are three or four other bus drivers in the same flat, in the same block, and none of those have ever been told that he is autistic, but it is not difficult to spot that he is not quite your average guy and I think they probably look out for him.
Mark’ Yes.
Nicki’ And that gives us the degree of comfort as well. Because you know he can be subjected to ridicule and, he is an adult, we can’t be there looking over his shoulder and protecting him all the time and he quite often doesn’t even realise that he is the subject of ridicule. And I suppose there is a degree of comfort in that but it is just knowing that there are other people around him who will be keeping an eye out for him you know and if he is put in a difficult situation that he will have somebody in the same block that he can call on. So… I mean he is independent isn’t he?
Mark’ Yes.
Nicki’ You know he drives and he takes himself off to bus rallies and all those sorts of things. He is living quite a …you know a satisfying life as far as he is concerned. And I think that is all we can ask for. That is all we want for Tyler. We want him to be the best that he can be and have a life that he is happy with, and so we are just doing our best to facilitate that aren’t we?
Mark’ Yes.

Do you use support groups at all?

No not really. I mean I am on the NAS a lot. I do have, I am on the internet all the time, okay, and although my friends are spread all over the place and every one of them are in contact every day at some point and I rely a lot of my friends. And my friends are very open. I am lucky to have a friend in Ireland whose father works in the education system and is also very familiar with special needs kids so I get a lot of information. You know a lot of advice sometimes from her through her father. He is a wonderful man. And I have got very good friends in the States. My mum is massive advocate all over it. You know, where I might not necessarily get a lot of support on one area of the family, I get more than enough in the other, if you know what I mean. And my mum is all over it, just constantly sending me information, she is constantly on the phone to me. She is making sure everything is okay.

Other than that, do I talk to anybody else whose children are … no. I probably don’t come to think of it. No. Hm. I know I am a member of the National Local [er] the local Chapter of the National Autistic Society and goodness me I have never even taken it up. How bizarre is that? No. That is really… that has made me think… I have never even thought about it. I guess I have called the hotline that they have as well a couple of times on certain issues, but to be honest with you I am really into books. I have been taking a couple of courses. I have already taken ‘Working with Autistic Children. I am now going to be taking an effective communication course and I am also going to be on the Help! seminar through the National Autistic Society. So I guess I probably rely more on books and sort of my personal take on what is going on then other peoples experience.

Maybe as Charlie gets older I might actually reach out to other people that are. But I guess right now I am probably more focused on my situation and I guess I am getting all the answers I need already.

What do you think has helped you to deal with the whole situation? Is there anything in particular that you have sort of drawn upon?

Lynne Well you have been wonderful [laughs]. So many marriages break up over this sort of thing.
John’ They do, do they.
Lynne Yes. And it is usually the bloke that goes.
John’ Right, oh.
Lynne Yes.
John’ Well I suppose, I mean, okay, put it another way, there are times when we are both together involved with Gavin, but when he is home, yes, I can consciously take Gavin off Lynnes hands but I know there are other times when she is looking after him when he is home for half terms periods, and Lynne is teacher and so it is her half term period and I am still at work and I recognize that she is bearing the brunt of the load. But, you know, yet there will be times when I can… okay we just share the load basically, although we simply don’t have an even share, but … Sorry what was the question? [laughs].

Lynne I think it is team work really. Weve approached it… weve always done things together with him haven’t we at weekend and kind of….

John’ Okay. I suppose the knowledge that he is in the safe hands, particularly since he has been from age 16. For the last eleven years, we have had complete confidence in the people first at school, and now at the care home, but essentially the same bunch of people, you know. And, and there is never any sense that I am worried about what might be happening up there. Does it ever occur to you?
Lynne No, never.
John’ It is a complete and utter, you know, trust in what they are doing.

How do you think you have remained so sort of calm?

[Laughs] Probably yoga. Well we are both … I mean [husband] is very positive about, my husband is very positive and just I don’t know really, you have just got to get on with it, you know. I think if you were uptight all the time and upset about it. I mean you have your moments obviously, but your life would just be a misery you know and you have been given these kids and there you go, you know, you have got to, but the yoga helps me a lot. You know when they have gone to school in the morning, I go to a teacher on a one to one basis. I have a little practice I do for about half an hour and that sort of sets me up for the day and then sometimes I do a little bit at night if I think I am not going to get to sleep because sometimes you are so hyped up by the time they are in bed you think I am never going to sleep tonight.

And just my family has helped to support. The group, the group I go to [support group] that were a real turning point, because I have got somewhere I can go and talk to people. You know. I think without that, I think if you didn’t have that sort of network of support, you would just feel isolated. And I am sure you could… and I mean just, like we try and get out even if it is something that we know that, even if it is something that is going to not be easy we still go. You know if we are invited the temptation is to oh no, we are not going to go, it is too much like hard work but we go, we go and you know if they are good that is great and if they are not, then we come home or we try and deal with it there. We have carried on… we still go on holiday abroad every year. We go on a ferry to France every year and you know it is stressful but you know you have got to sort of keep going doing things and you know try and get them used to … you know they are frightened of a lot of things and the world is scary for them but you have got to try and gently do it, you know get them out, get them doing things and keep on with it really. But yes, I am not sure how we stay calm actually, sometimes, yoga and wine I think [laughs].

The school has really helped me. The school – I can’t praise the school enough – because it has settled Sam down and because the teachers have a real understanding of autism. I am not saying other schools don’t, but they do have an understanding, but the teachers who go to that school see such a huge spectrum of children with autism. There are children there who can’t speak and things and there are children like Sam who are on the autistic spectrum but they love people and it is very difficult for I think, for teachers in a normal school to understand autistic children, but in that school they have a real understanding of it and it helps.

And it helps educate me as to what he can do and why he does things and for me to see how Sam sees things, for me to understand how Sam sees the world, helps me…. Not to look after him but helps me, helps me with his needs. It helps me to … how can I explain it… because now I know more about autism and how Sam sees things I can help him access my world in a way. Now I now know that Sam sees everything the same. He doesn’t really understand the difference between a person and an animal and a book. He sees them all the same. He sees them as the same value really. It is quite strange. And he treats them … it is not that he doesn’t love people, he does love people. You know we talk about that sort of … that is what I am trying to do, another thing is to understand emotion. It is very difficult for Sam but the school really help that. They really they really open Sam’s emotional understanding more. They talk about things and they break down things into very, very small things. At the moment they have been talking about sex education and growing up and they are just breaking it down into very, very small components and so Sam can access them and try and understand them so that is good and in that way they educate me because they tell me what he is doing and how he is doing it and that is good.

And they have a community coordinator at the school. She isn’t a teacher but it is someone who helps the parents, is there for the parents and carers and the family and like if you have got a problem you go today and he will try to sort it out for you, like I have got a problem with getting Sam to school, and he is keeping…. He knows all about it and but he is not doing anything at the moment. We are waiting to hear from the LEA, but if I am not satisfied he will go in there and he will be my like advocacy for that. And he also acts as Sam’s advocacy as well with things so if there is anything you want to know he will help you with, so that is good.

Is there anything that in particular that helped you deal with the whole experience?

I don’t think so. I think as a parent if you are reasonably intelligent and with access to the internet and stuff like that, you just deal with it and get on with it. I think probably working in mental health for as long as I have has sent me a bit mad [laughs] and my norms and values are kind of blurred and I think you find that a lot with mental health people. I am mental health people, I am very mental. That because you see so much of what is not normal that your values do change over time so I am not really fazed by anything, you know, I am kind of, I am never really shocked about things that happen, you know kids that get abused or whatever, I am never shocked by that because I used to see and deal with a lot of the emotional stuff with that in my own childhood and in families that I would deal with through my work.

And then when I moved over to the Autistic Society, it was 24/7 autism, do you know what I mean? So I have been there, seen it, done it kind of thing, not that every experience is very real for every person. But I kind of know with as soon as they start talking and you are talking about whether it is education or whether it is about an ex husband or whether it is about difficulties in relationships, you know where it is going. I have been a nurse since I was 18 years old and I am 40 now. So 22 years experience of working in mental health, and being married in mental health and all of those things to sort of help me understand things better.

What do you think has helped you deal with the experience overall?

I think reading as much as I can about it, about Arthur’s conditions. The Tourettes Syndrome Association, have a really good internet site which used to have a forum on it, but they have closed the forum and I think it is such a shame because that really helped a lot because with Arthur’s licking and things like that some of the things aren’t in the books you know and when I put on there saying my son does this, has it got anything to do with his condition. Other people have answered, “Oh yes, my partner he can’t go through a door without licking and touching the door frame. And my child licks shopping trolley wheels.” And you know that kind of thing and it was like, okay, you know, it is part of the condition because your family and that tend to tell you, “Oh no, rubbish, he can stop that.” It is not you know, and I can say because the books don’t have it specifically there because they can’t possibly put all of the information in there, you know. So that is a shame.

I mean I have been on the National Autism site and that and that gives a lot of good information. I think reading that sort of information and I say reading books written by people who have had the experience, that have been through it. And when you see it written down it makes you realise that, you know, this is real, it is not just someone saying it, or my imagine, it is not just our experience, you know. So yes, books have been the biggest help. The Carers Association practically because they have helped me to find out what I need, you know, to find help and support through it. The other organisation that was really good was Parent Partnership for school. I mean we had a support worker and she has just left but she has helped us through the whole process and we were very fortunate to have her the whole way through because one of the biggest problems and I think that everybody will find this is that every time a professional changes you have got to start all over again and whereas the lady who helped me she knew the whole history of Arthur’s education and she through us all the way. So it never had to be explained or there was never, “Oh well what about?” because that had already been explored and she knew it.

Yes, so I think sometimes we really have to remind ourselves of that, you know, you are dealing with a child… it is like telling a 7 year old everything about sex. You know, you know what he is going to say, and everything is like that and I think we know that there are problems, but from actually knowing it and actually taking it on board and being able to see the behavioural things that he does as part of the condition, I am still struggling with that.

I know everything there is to know about it, but when he goes and does certain things I still can’t stand back and sort of look at it and think well that is the Asperger’s side of his interpretation of the situation. You know my first reaction is ‘don’t do that. You know so I am still find it, me personally, some parents once they get to know that, they are very clear, they are able to adapt their answer and the way they carry their discipline. I put my hand up, I haven’t been able to do that and I think my husband hasn’t either and may be that is why we need more support. But I have been honest about it and I have told the doctors you know, I am kind of like stuck on that. And yet I know as much as I can know and I did lots of courses and things but I still can’t separate that.

I still kind of expect him, if I ask him not to do that, to stop. So it is a tricky one. I mean obviously as parents we have to cope with our own problems as well, you know, I know I am not perfect, so that has been a hard one. And I think lot of parents probably are like that, although some are able to sort of … I think the younger you start everything, I think that is the other thing, if at the age of two when they wrote that comment about him in the autistic spectrum, if we had had all the knowledge and the support and the things that I have gathered knowing now, as a two year old he would have been better at controlling the behaviour thing, because you would have put certain, you know, a 2 year old you can into play, you can distract him with another toy, you know, all those tools that they give you to do that. But when it is an 8 or 9 year old who has got a brain of a 14 year old, you know 12, 14 year old, his spelling, his maths, his everything up to 12 years old or older still, it is very hard to discipline that. So I think I have been so busy trying to prove what is going wrong that I haven’t actually had the chance to try and train myself into how to handle when you have a certain situation. We are getting there, but very slowly.

I never had a social worker because didn’t really know if I needed one, never knew if I needed on. My GP in London was fantastic. I can’t praise him enough, he pointed me into so many directions, I mean regarding, I didn’t know until Nicola was about eight or nine that she could have Disability Living Allowance, I didn’t know nothing about Carers Allowance, so that is the thing that is lacking. The government, there you are look, strong point, my voice has gone … the government don’t tell us, us the carers, they don’t tell us enough. Okay they don’t want to give us nothing. They don’t publicise that you can have this and you can have that and we are here to help you. Well they should. That is any government, not today’s government, that is right across the board. Okay. Edit that out if you don’t want it in [laughs].

Sorry, they don’t. They don’t tell us anything. So there you go this is what we need. We need the government, we need… I think we need a minister in charge of … You have got them in charge of education, you have got them in charge of home affairs, we need a minister in charge of carers and disability to get out there and to tell the people what we need, what we can have and then ask us what we need because they don’t do that. Well the local authorities are starting to. There is a lot of steering groups now and I have done a couple. I have been on a couple in Devon where they do use carers when they are forming papers to say this is going to happen or that is going to happen, so again a very slow process but they are starting to use us a little bit more because we are doing it and we save you thousands, and hundreds of thousands of pounds every year, so come and see us, ask us. Please [laughs].

Yes. No. the government need to [laughs] … in all honesty the government need to look at us and say well we should tell them what we can do for them. I believe in that. I am quite a capable person so I never felt I needed a social worker as such but I do think, not one that is going to be in your hair every five minutes, but maybe you could have a support worker. You might not speak to them for two years, but then at least then you could pick up the phone and say, in this situation, I don’t know what to do. Even a support line maybe, not even if you don’t have support, individual support workers, because that is very expensive to do that. But a lot of the help or a lot of the advice that we do get is charity based, sorry, helplines like Mencap and NAS, which is the National Autistic Society, not actually government funded or local authority funded.

So I think in that sense we could do with more support when we could just, as I say, you might go ages and ages and not need anything but just to say you can ring this number and say “what do I do?” “Where do I go?” “Who do I speak to?” is good. I mean a lot of families do need the more stable secure support. That is fine but not everybody does and it seems that if you don’t and you might only need the minimal support, then that is not there. They are either going to give you full blown where they literally live in your house or nothing so maybe finding a happy medium.