Or the fact that he can’t socialise, they think it is because you haven’t let him mix with a large group of children. “Let him go and play football with the kids.” He can’t play football, he will just get beaten up and bullied. He won’t be able to play football with kids in the park. He can’t do that. But people think that he hasn’t got a handicap, all he has got is a parent that doesn’t know how to bring him up. And it is the old MSBP Munchausen’s Syndrome by proxy which has now been discredited. But the authorities still use it, they now call it emotional abuse but they mean Munchausen’s Syndrome by proxy but they are not allowed to use that word any more because it doesn’t exist apparently. But inadvertently and without knowing that theyre doing it at all, almost everyone you meet is accusing you of MSBP, it doesn’t matter what you do. “He is only like that because you are doing this wrong.” You know, and this is something I hear that is common among everyone I have spoken to anyway, the parents with autistic children, that you have to confront that all the time. You are constantly telling people, “Actually my son is autistic.”

And then you have then got the next problem. They have heard the word, they don’t know what it means. So then you have to explain what autism is. It is such an incredibly complex condition that even the so called experts haven’t got the first idea what it really means to be autistic, or to have autism. They can list criteria for diagnosis but they haven’t got a clue what it is to have it, or to live with it.

And yes, and so I do upset people because it is quite hard, because on the one hand you do want your child to listen to other people, but on the other hand, you want other people to understand it from their point of view and it is very hard to do that, you see, and you don’t want, you know, when you are out in public and the child does something that you know is not really socially acceptable, you don’t want people to think that you think it is socially acceptable, but at the same time, you know that your child can’t help it. So you kind of have a battle with yourself too, I think, you know because you don’t want… I feel that people are judging me and his behaviour and I as a person, you don’t want to be judged as a bad parent, or a bad mother or someone who doesn’t have good standards you know.

And so I tried taking Arthur to karate lessons and I mean may be if someone else had taken him, may be he would have stuck with it but I couldn’t handle it because he couldn’t, you know, in karate you have got to stand still and you have got to follow the moves and he couldn’t stand still in between so he had nearly had the instructor going, “Arthur stand still.” And I am going, “Well I know he can’t.” You know, like I said it is kind of a real battle in your own mind because you know you are like, yes I would like him to stand still as well, you know, but I know he can’t although it probably didn’t bother him that he kept saying it, because he would just carry on anyway. It bothered me, you know, so yes, it can be really hard [laughs].

And I think a lot of the time the family environment is where a lot of the, or the immediate family is where a lot of parents struggle with because not only are you dealing with this thing that is thrown at you – not the child but you know the whole autism way of life – but you have also got quite often a lot of disbelief or accusation or it is something to do with the way you brought them up, from professionals and from family members and if you did something differently.

I had a professional that used to say to me quite regularly, “Give him to me for three months and I would stop him doing that.” And I was dying to say, “Well go on then. Try it.” You know it quite made me laugh because it is this perception that you could stop it and you can’t. I mean they are just who they are and you do what you can but I think a lot of time really don’t want to know that their daughter has got this child that may be if he is functioning at the age of two years old when they are fourteen or is eighteen years old and has still not done any schooling for ten years or that you know. It is things that really, it is something to be shoved under the carpet still, a lot of the time and that is certainly the case in an awful lot of parents that I speak to.

[Laughs] I feel I have been treated like a criminal. I am treated with great amount of disrespect by the education profession. I have had to give up my career. I am actually a telecommunications engineer by trade and had a very good career. I have had to give up work. I am not able to work any more. I haven’t been able to sustain a relationship. Financially I’m about to lose the house because I am not able to work and the benefits system is a maze of difficulties and if you have got a mortgage it is very hard so I haven’t been able to pay the mortgage this month. I have problems controlling my weight, because the stress means that I comfort eat. I am on antidepressants and basically I had a baby and it has completely and utterly affected every area of my life.

You know a lot of the time I feel I am judged to be the world’s worst parent. It has actually caused a breakdown of my family relationships. My mother and I don’t speak any more because she doesn’t believe in Asperger syndrome. I am just a weak parent who doesn’t discipline her child properly, even though my younger daughter doesn’t have any of the behavioural difficulties, Nicole does, at all. And she is parented in exactly the same way. In fact her parenting is probably a little less strict then Nicole’s because I have to be firm with Nicole and very rigid. And apply the rules very evenly and fairly, you know we all have a timetable that is kept on the wall so every, you know all day, every day, we are all timetabled so Nicole knows what is happening and where we are all are.

So really having a child with Asperger syndrome has actually caused me really to lose everything. I have got friends who won’t come and visit, who we are not allowed to go and visit because they don’t like Nicole’s behaviour. They feel she is rude and ill mannered. So yes [laughs].

I feel like I was let down. That is what I do. I do feel like I was let down. I feel like they should have listened to me more or maybe I should have been able to put myself across more articulately or I don’t know, maybe I should have done research on it then and wrote comparisons, wrote like a diary for [son] and taken it to the doctors, but then I don’t even know if the doctor would have listened to that anyway. So it wasn’t until you know, the health visitor came round to help me with breastfeeding with [younger brother] and she saw [son] and she said to me you know, “Have you got a referral for him yet?” And I was like, “No, I am still trying but nobody will listen to me.” And then she was like, “Well next time you go to [doctor], next time you go to the doctor, just tell them that I think that there is something.” And then that is what I did and then there was a lot more willing to listen as soon as I said “The health visitor thinks…” blah blah blah as well. You know, although it shouldn’t be like that, they should listen to the parents. But you know if that is what you have to do, that is what you have to do.

I think also it is very difficult for me, taking the boys anywhere where there is cousins because you have got the comparison, say for example they have got cousins in Devon who are older than them and to be honest with you as far as I am concerned that is okay because Peter being the youngest is the youngest but when we go up to visit Nick’s brother and his children, Peter is one of the older ones, but in fact he manifests as the younger one and it breaks my heart at times to see him playing with a child five years younger than him, who in fact shows more maturity then he does and in fact the, [cousin] his cousin, who he is one year older then… gravitates towards Tom because he is bored, can’t see Peter’s logic, can’t see why he is doing these things, and you are thinking well if only. You know he shouldn’t be doing that. And yet, I think it makes me more apprehensive visiting them just because of that comparison.