The hardest thing, one of the hardest things I find is other people, you know that is the thing I am always bothered about. I know it is a problem more in my head and other people just say “I don’t care what other people think”, but you know from when he was little and he used to scream and head bang and people used to stare in shops. And going to school and in the playground and other parents that don’t know me, seeing me carry him or him crying and even now, you know when he goes out in his slippers he looks different and going into our local post office that we go into almost every day, and they say, “Hello.” And he doesn’t say hello back. I feel uncomfortable with that and apart from that the other hardest thing was the whole school thing; taking him, me dealing with the teachers. I would have counted that as the worst thing ever but it is history now and I have moved on.

But I think ongoing it is peoples attitudes and peoples assumptions and the way people look at you even now, when it is obviously a school day so why isn’t he in school? And I have not had anybody say it to me yet. I have had people say, “Oh aren’t you at school today?” in a nice way. And I have said, “Oh no, he is home educated.” But it is just everybody’s assumptions that, even other parents; “Oh but bring him along because he will love it” and I am like “he won’t, he will hate it”.

And just getting that message across is really, really hard because people just haven’t come across it or they have heard of it but they have got no idea about the implications on everyday life and as I say, we can’t do normal things. He won’t ever go to a birthday party or family gatherings. We have got a christening coming up in a couple of weeks. It is my brother’s son’s christening so it is immediate family but there is no way Callum could go you know, no way and even close family, I think, struggle with how difficult it is for Callum to do something like that. But it is. It is difficult and I have got to the stage where it is not worth making him do something like that. You know why would you make somebody do something that they really don’t want to do that would make them unhappy? So, other peoples attitudes.

Tesco on a Saturday is a joke I think almost. And … but I sat Tyler in the main part of the trolley and he is a big boy for his age, so he couldn’t possibly sit in the seat so we walked around Tesco and I gave him a magazine off the kids shelf and he was perfect. Sat there looking at his magazine, wasn’t flustered, didn’t go into meltdown, it was fine. I got to the checkout and the checkout lady, Tyler didn’t understand that the book had to be scanned so I could pay for it. So I took it off him and I gave it to her and said, “Please be quick.” And he said, “You are a naughty lady. You are a naughty lady.” Because he thought that she was taking his book and she went ‘Tch Tch hm very loudly so all her colleagues on the other checkouts could hear, got all of their attention, looked at me, looked at Tyler going into meltdown and looked back at them as if to say, “Look at this woman who can’t control her child.”

And that stirred up a whole load of emotions for me. I was torn three ways. Firstly it was to say to her; ”Who do you think you are? You don’t know me. You don’t know my son. How dare you judge me? And how dare you bring it to the attention of your friends.” That was my first reaction. My second reaction was to ignore her completely, ignore it completely, shut it out, pretend it wasn’t happening and just deal with Tyler. My third reaction was to say to her, “My son is autistic,” and approach it in a way that was, you know, please understand. And actually of those three I didn’t now which way to go. So I just stayed quiet, dealt with Tyler and got out the shop.

And a couple of weeks later we were in B & Q or, you know, a DIY shop and Tyler was playing with some things in the shop and it was time to go and he didn’t want to go. So you know he screamed a bit and banged his chest a bit and he was stood near a little boy who was also playing with the same things and the little boys mother came over and took his hand and moved him away from Tyler because she didn’t want him being near Tyler and I said, “It is not contagious you know.” But it hurt, it really hurt that somebody felt they should remove their child from where my child was.

Tony’ There is nothing… like Alison said…. There is nothing worse then people gawping at you when your kid is having a fit and you know, you just …
Alison’ And you just feel like bursting into tears because you do. I used to go shopping with him. You used to be at work, [sister] was at school and I would take him round the supermarket shopping and he got to the stage where he wouldn’t want to sit in the trolley. He would want to come. Then he would want to push the trolley. He would be ramming it into people. And I thought oh God you know. And then he would be having a fit and he wants this and I wouldn’t let him have things because obviously you can’t. I used to try and make him understand that you can’t have everything you want. If he sees it, he can’t have it.
Tony’ Yes.
Alison’ But having to explain to a child like Nathan you can’t have everything. Every time I say no, he is going to have a fit and I thought there was no way I was going to keep giving in and saying yes every time. Just for an easy life because apart from the fact that it was going to cost me about fifty quid extra on the shopping bill. I was making a rod for my own back here.
Tony’ I mentioned doing some things …
Alison’ Thinking he could have things all the time.
Tony’ …that make your life easier but there are other things obviously, things like sweets …
Alison’ Well that is it.
Tony’ …. You don’t you know and … but he has got used to that now. He understands the word ‘no.
Alison’ He does understand the word ‘no. And that is why sometimes he has a little moan sometimes because he does understand the word no.
Tony’ Yes.
Alison’ He likes the word ‘yes a lot more.

But it is quite difficult when you are out and you are out in the supermarket because you have got you know, the added pressure of everybody looking at you because what they see is. I mean, you can’t blame them, he looks completely normal. There is nothing different about the way he looks. And he wants a DVD and he is not going to get one and so he kicks off. So the general public what they are seeing is a spoilt brat whose mum obviously gives into him all the time. So we get a lot of sort of tutting and “Tut, if that were my child….” kind of thing. But often in the supermarket I have had to just… I have used the symbols, which sometimes they work, sometimes they don’t. You know sometimes I crumble and give in – I am only human – and other times I have just had to abandon’the trip and take him back to the car and go home. You know, or sometimes you just ride it out and just let him, you know, let him throw himself round the trolley and just ride it out and let everybody look.

Do you ever say anything to people?

I do yes. Yes. I have got some cards that I keep with me that you can give to people. And they have got a little badge as well that I put on him sometimes that says, ‘I am not naughty. I am autistic on it; a little badge. So I think for the most part once people know there is a reason for it they are usually a bit more understanding. You get the odd one. “Oh they would have just been naughty in my day. There weren’t any of that autism in my day. They were just naughty.” You know which is not helpful really is it. But you know they are entitled to their opinion aren’t they?

It is not, like you can imagine to some extent what it is like to be blind, you can shut your eyes. I know it is not the same, it’s like rich people trying to imagine what it is like to be poor by not buying a new suit that week [laughs]. They know they can still come back to spending their money the next week. And it doesn’t really tell them what it is like to be poor, but it gives them a little bit of an idea. In the same way that shutting your eyes gives you a little bit of an idea what it is like to be blind. It is not, because you can always open them, you know as soon as you have to, you can open them if you need to and you have got that choice, but you can’t even do that with autism. No one can imagine what it is like in my view. Maybe somebody can I don’t know but I live with it all the time and I can’t imagine what it is like. All I can do is try to analyse my son and how his mind is working as best I can and try to see how I can match up his mind with the way his mind has to be if he is to be part of society and try to somehow get the two to meet because I am also trying to engineer society to some extent through campaigning and stuff, but I am never going to get anywhere with that. It might have a small influence if lots of people like me do it, I suppose over the years that is how things change.

But no one can imagine what it is like. So they welcome him but they have got no idea and they treat him like he is normal and you know, they even say to me “Don’t worry. We won’t treat him any different from any different from anyone else.” And they mean well by that and I think, no actually you have got to, you have got to. For example if you are talking to a group of children, you don’t just talk to a group of children, you have to mention the name of the one with autism or he doesn’t realise that he is part of the group. It’s just little things like that that you need to do that are different. You know, “Now kids and whatever your name is.” And they went ‘oh me as well and they realise they are part of it. So you have to treat them differently. It is only a small way, but people mean well but he is still not accepted as an autistic child among them. He is accepted as a child whose autism they will ignore among them.

Jason’ But a lot of the other not clubs but activities around …
Helen’ They are geared at nine year olds so there is nothing else for him again and trying to get him in with neurotypical children as they like to call is, the people don’t want to take the hassle and they don’t have the insurance and we find that very difficult don’t we? You know, because he gets so over stimulated he gets very, not touchy feely, but pushy shovy, and they are frightened he is going to hurt somebody, so he is not allowed to do stuff. So we don’t go to either of the play places, like Wacky Warehouse and stuff like that. We can’t take him places like that because the loud music and stimulation and everything is too much and it is an accident waiting to happen and very rarely do we get the chance to take them somewhere like that, when it has been, they won’t turn the music off even if there is nobody else there. They seem to think they have got to have it on and if they turned it off that is what causes the problem with them and then we could play quite nicely couldn’t we?

Doing things like going to the cinema, we can’t really do that. I found about a place that does autism screening so I will take him now there so if wants to run up and down like a madman I let him. I find it hard going to peoples houses because he will get fascinated by their items and want to touch everything or you know eating out at peoples places, because not everybody wants to have chips, but that is all he will eat. Going out like we went to [town] for my birthday in April and we spent about an hour and a half looking for somewhere that did chips because that is all he will eat, you know, that kind of limits us a bit. Travelling as well can be you know, a nuisance. But if I go I will be prepared for that, you know, he can be okay, it depends on his mood really.

Shopping used to be, its not now he is older, now there is obviously other things but when he was little shopping was a nightmare because of the noise in the supermarket he didn’t like it and he would touch anything. He would pick up everything and that is how he used to investigate things by picking up and putting in his mouth. So absolutely anything he would want to put in his mouth. Like … and all the vegetables he would pick up and want to eat them and you think yes let him have a carrot and he would eat as you go round but he would pick up boxes and it used to be really stressful and other people would look at him and you could see them looking at him and thinking oh there is something not quite right there and you know because I would constantly be saying, “Oh no, we are not buying that. You can’t touch that.

Nick’ Of late actually, it is almost every time we have been out, there has been some issue, either he doesn’t want to go somewhere, or wants to go somewhere or he wants to do this. But there is no real, you don’t go out and think oh here we go, he is going to go for one today, because generally when you think that he is perfectly okay. [um] But generally he seems to think that anything that happens to him, that he doesn’t want to happen, you tell him to do something he doesn’t want to do, rather than thinking here is a reason for you doing that, he thinks you are doing it to have a go at him directly, which is, you know it is quite obvious that is why he gets angry because he thinks people are picking on him all the time.

So you have to try and wait and get a calm moment and explain to him why you can’t do a particular thing or why you can’t go into a particular shop and generally if you can calm him down and explain it to him he will understand, but you have got to be continually on your guard, when you say, “No, we are not going into the shop, and no, if we go into the shop you can’t buy anything.” And you have always got to always be on your guard to tell him that beforehand. And generally if you lay the ground rules before you go into a risky situation it is okay, but it is when you are busy, there is a lot going on and you don’t explain everything to him and he will, as soon as you say no, he thinks they are having a go at me, and he gets angry about it.

Vikki’ This for example, there is a recently opened DIY shop up the road, beautifully set out, local B & Q, and we go in there and of course we didn’t actually tell him that we were just window shopping or being nosy and he takes it upon himself to kick every single display item that he can come across. So we beat a hasty retreat, but you know, we had the ceramics being kicked and we had the window display being kicked and we had the looks from other parents with their beautiful coiffured children, beating a hasty retreat and then we were dragging him through the store as he was kicking every fixture and fitting and looking back on it you can think oh you can laugh, but at the time I think I met three people I knew including two people I worked with, whilst dragging him out by the shoulders.
Nick’ That was simply because he didn’t want to go into B & Q.

I mean we had also had the same problems like where she would go up to strangers and someone said, Well because she is not aware of even her own family, you know, when she goes up to strangers and things, she just does it, because she doesn’t know You know, you might say, Well don’t do that. She has got no real understand of that persons feelings and stuff. And I said, Oh well, she does. But she said, Well next time she runs off Because [brother] had come round and he said, I am not coming to the supermarket with you. I am sick of running after her, because you were, because one minute you could be standing with your trolley and the next minute she would be off. But it was like an ordeal sort of going out for your shopping because she would either like go up to somebody who she didn’t know or she would run away. We couldn’t understand at the time, why should she run away, go out of the building. So and you were always like on your guard and because you couldn’t restrain her in reins because she just freaked out because she wouldn’t even let you hold her hand. And sometimes I noticed that it must have been so noisy that she would even sit on the floor and put her hands on her ears like that. So she couldn’t stand the noise.

But I knew that there was something wrong in that sense. Do you know what I mean? And like [brother] would say, Well look she is sitting on the floor. And I would say. I can see her. And he would say, Well why is she doing that? And I said, Because there must be something wrong with her hearing or something, because she tended to go like that with her hands on her ears. That like go shhhhh like it was a real strain and then actually sit on the floor with her legs crossed with her head down and then when the thing it sort of must have come like in a wave, her hands would go to the back of her head at the bottom and then when it sort of passed she would sort of look up and go whooo like that. As if like it was a real bad, you know like a torrent of noise or something and then it just petered out.

When were out and about I wouldn’t go outside to town unless I’ve got someone with me. Preferably an adult but if not then his big sister because she can run, shes a very, very fast runner because shes had to be to catch him. Safety is very much an issue at school. Hes been in an infant playground within gates but now hes going to be in an open playground so that’s another… shopping he still has to hold my hand for a seven year old boy holding my hand going round the shop is a bit much. I can let him on a good day he can push my trolley for me but I’ve still got to be holding the trolley or hed be off. Hes very excited with it being the school holidays so Saturday he just took off in the supermarket, that was him twice, I just have to let go of the trolley and run and even his wee sister knows that should he bolt in a car park getting in an out of the car, she stands where she is. She doesn’t move, she stands with my bag because I just drop my bag and run and she just freezes and waits.

Road safety is a nightmare. He just has no idea that the traffic’s dangerous so that’s why I always have someone else with me. In [town] there has to be two of us and I just cross any main road with Andrew without being on either side of him so when you’re out you’re running on adrenaline all the time. People think Im skinny because I don’t eat much but I do, I eat loads [laughs], Im always hungry but I burn it all off because Im living on my nerves all the time.

But as I say if people could just understand. I mean it would be nice if she could have AS sort of tattooed on her forehead and everybody would think, ‘ah right; if she behaves like that, she behaves like that. But I mean it is going to take her to supermarkets or something like that and I mean right from the start I mean one day she said to me quite loudly, she must have been small enough still to be put in a trolley. “What is that woman standing over there with a piece of paper in her mouth?” So everybody could hear. And I nearly died. She had never seen anybody smoking before. And well, she probably had but it had hadn’t suddenly popped into her mind and the humiliation people look at you as if to, you know, and it is just quite crazy but if she was severely autistic they would understand or Tourettes because it is obvious because Tourettes is quite closely linked, but because she looks totally normal and yet underneath there is all this lot churning inside all of us.

And one side of this I haven’t mentioned, I have only mentioned the diagnosis and the school and the authorities and keeping him at home, but the other side of it is people generally. Because you have got a mix everywhere you go, everything your son does, everything you do with him, it has got to be different. It can never be the same as anybody else with their child. It has got to be different and because it is a totally invisible condition, and because in the case of our son, he can actually speak perfectly well. He speaks oddly but no one thinks of that in any way other that personality but it is not, it is disability. It’s his brain, it’s working in a different way. He speaks from searching his memory rather than from generating speech. You know, live, it is all wheels going round and piecing together what he has heard other people saying and he speaks like that and it is very robotic.

But he does speak and nobody can see the problem. They can see that he is a bit odd, but what they also see and I have seen this from so many other parents with autistic children, they also see that you are treating your child differently and they put two and two together. Of course he is odd, that parent is treating him differently. So you are constantly getting people telling you how to look after your child, telling you, you are doing it wrong. You know like it was when he was first born, you are constantly getting it. And you can say, “Well actually he is severely handicapped.” “Oh yes, where is his wheelchair?” And they just don’t believe it because there is no wheelchair, no callipers, no white stick, no dark glasses or ear piece, there is no anything. He is not deformed in any way. He looks, in fact the only comment we get is that he is incredibly handsome and very healthy and he speaks but you have to treat him differently.

I mean we did a lot of problem solving in the last course, so a parent would say a situation that they would have. You know, “My child when they go to the shops with me will present this sort of behaviour.” So then we would sort of give ideas of how to minimise that sort of set up and I think it is a learning curve for all parents, because a lot of parents probably think they have to take their child shopping. I wouldn’t take my child shopping if you paid me to, but I have had to make that adaptation and the occasional time when I have had to go and get a pint of milk, he has stolen something so we have had another issue to sort out, but I don’t go and do my weekly shopping with my kids. I am not able to. Otherwise they would be, I don’t know whether they would be the ones screaming on the floor or whether I would be the one, you know. So just a simple thing like going into the shop and buying a pint of milk can present itself to be a big issue and that gets you down quite often.

You think you know you can’t go into a restaurant and have a nice family meal. You can’t go to a friends house just on the off chance, you know, pop in and say hi and that because unless you prepare them that that is what you are going to do, you know they go, the whole thing goes kaput. I mean I have gone to peoples houses and I have said, you know, if he starts were going home, you know and sometimes he has been fine because he wants to be in a new environment but leaving the environment has been hell, down to having to pick him up physically from his arms and his legs and carry him out to the car because he just would not come. So then you have had a nice time with the family, everything has been fine and then the last minutes they will remember you having to drag your child out. So there is always those sorts of issues.

But I have learned. I have had ten years of it, so I learned to sort of prioritise a lot but I think when parents first have the diagnosis they don’t realise that they have to do that. You know you need to make yourself a group of friends that are accepting of the situation, not friends that will judge you by it. You need to do the same with your family and that is the hardest thing, you know having to sort of, you are not going to hang around with your grandmother if she doesn’t get it all the time, which is a pity. So you isolate yourself if you don’t consciously go and make that effort of meeting other parents and I think when parents are in all this mess how can they think of on top of that go and make friends you know, may be because I am social… I am very Latin, so the Latin side of me is saying, no, no, no, you won’t give it up. So I go and do courses, I go to support groups and you know, but I know a lot of parents that are isolated because they are drained you know they feel they can’t go out. So yes… it is hard.

Funnily enough, he is smashing on holidays. He loves them. He is counts the days down. Now that his birthday gone, he is counting the days down for our holiday now. He absolutely loves them. He loves sleeping in another bed and using another toilet. Seriously he does. That is what he loves [laughs]. And he likes going to the beach, he likes just being out of the house. You know he does get quite depressed here. He is always saying that he wants a house with a garden. You know we are trying to make it happen for him but he does really love holidays and it is almost like he is easier to control then as well. I suppose it is because he is taken out of his environment.

But we still try to keep to routine, you know, we have, you know breakfast, go out, come back, [younger brother] goes to bed, we all have lunch. And then we will do whatever. But if we let him choose what he wants to do, he is generally better. You know if we said to him, “Let’s go and sit in the pub all afternoon.” He would be like, no. But if we said, “Let’s go bowling.” He would be like yes, yes. You know, so he is good on holidays.

We have found that with holidays the best place for us to go is to Butlins. And that is because there is loads and loads for the boys to do and basically, I mean, we can go on the beach. We can go swimming in the pool, we go you know have a go on the wave machines. Theres go carts, as long as there is something there for them to do then they are fine. And also the apartments that you get, they haven’t got ornaments, they haven’t got wallpaper they are basically quite family proof and that is another issue that weve had. I mean we tried to stay in a… tried doing a caravan holiday and I think because the boys are quite noisy as well, we did actually wake quite a lot of people up. So yes, finding the perfect … it was very noisy actually but I think they thought we were throttling the boys 24…

Did anyone say anything to you or not?

No, but we did get a few looks. We didn’t actually get anything said, but we did get a few looks and I thought probably when Joseph started his ‘yaaaa sort of noise then they probably think we are killing them or something, but Joseph does that when he is really happy and excited so of course he was doing it all week because we were away, but you know I remember nipping up to get and paper and coming back and thinking oh my God I can hear him, sounds like he is being killed. But they absolutely loved it. They love going away. Joseph does have a problem with coming back. He can’t deal with the going home thing. It did take two of us and a security guard to get him into the car last time we left.

Because he wants to stay there?

Yes. Yes. He absolutely loves it. He loves doing things. Costs us a fortune in the launderette as well because he will just sit 24/7 watching all the washing machines because when you have got sort of five or six in a row it is really great you know, sits there flapping away, “There goes more, mummy.” So, as I say, yes we hardly have to take any sort of clothes away with us. Because literally we just wash everything the minute we have worn it. And it is great, he loves it. Yes, but it is basically, it’s your surroundings and knowing that if they, you know they are not going to sort of get an open door and be able to run for miles and things like that. At least at Butlins everything is sort of safely contained and things and I know that if they did escape then they would be found sort of relatively quickly, normally at the sweetie shop bit. But yes, it is location and the actual sort of building or room or whatever you are staying in can be a bit issue.

Holidays we always have to make sure that they are family holidays now. There is no – and I mean Jack is at the age where if we wanted to do a sight seeing holiday or we wanted to do a sort of hiking or adventurous sort of holiday Jack would be up for that because he is of that age. Charlie no way. Unless it has got some sort of playground or some sort of space where he can let loose for a couple of hours every day it is really difficult. I mean he has gone… the first time we went on holiday with him which was an absolute nightmare was when we were in the middle of everything going off and he was probably about two years old and I went back to see my mum. And I didn’t realise at the time. I mean at the time we still thought he was hyperactive that is why I put up with so much during that holiday. I mean he really did. And I didn’t realise. There were so many changes, so many differences. Too many differences.

And that was a real learning curve. You know when I look back on that now we do have to think is the room going to be big enough for him to have you know space in? Is he going to be comfortable in the room? He has gone in a small caravan which is really good because space is an issue for Charlie. If it is too small he can’t deal. But he has gone on a caravan holiday with us, which was a specific park and things all around going off and he had a good time. We do always have to think about how long are they going to be in the car for? Do we have everything that they need in the car? You know you have to, it is sort of packing for your kids as you normally would but extra, you know.

Making allowances for breaks, you know, more so than you probably would with, you know, the average eight year old, six year old, whatever. But we try to do as much as we can anyway. We try to still do it. We try to still go. You know, we haven’t not gone because we don’t think Charlie is going help… deal with it. We try to adapt the situation to Charlie. Does that make sense? Rather than saying no, forget it, it is not going happen. It is okay well how can we make it happen?