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Tony and Alison - Interview 28

Age at interview: 36
Brief Outline: Tony and Alison's son, Nathan, was diagnosed with autism three years ago. He is currently in a mainstream primary school and will move to a special school for his secondary education.
Background: Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.

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Tony, a Market Manager and Alison, a dinner lady, have two children; Fiona, aged 13 and Nathan, aged 10.  By the time Nathan was 18 months old, his parents felt that there was something different about his development. He would eat only crisps and biscuits and drank huge quantities of juice. He walked by 18 months and by the age of  3½ wasn’t talking.  They tried to take him to nursery school at that age but he wouldn’t settle at all.  Doctors and regional health visitors told them that there was nothing wrong. 

Eventually Nathan went to the playgroup at the local family support centre where he stayed until he was 5 years old.  From there he went to the mainstream primary school and at the age of 6½, the staff suggested a referral to the children’s centre at a nearby hospital.  The GP referred Nathan and autism was diagnosed almost straightaway.  For Tony this confirmed what he had suspected for years while Alison says the diagnosis hit her “like a ton of bricks” because she had never thought that he had a lifelong condition. Both say life would have been much easier if Nathan had been diagnosed earlier.

Since his diagnosis, Nathan has improved considerably and his extremes of behaviour have calmed down a bit. Tony and Alison feel they know how to handle him better and try to avoid situations which may become problematic for him.  They use cards from the NAS when they go out, if necessary, and found that putting a television in Nathan’s room has helped him to sleep on his own for the first time in six years.  He is still at the primary school with a statement and will be moving to a local special school in September. 

Nathan is a very loving boy with a great sense of humour.  He loves watching Dr Who, Open all Hours and Ready Steady Cook.  He enjoys going to the allotment, especially stopping off at the local shop for sweets and pop and riding his bike.  Tony and Alison find that they often have to split up as a family for different activities.  Fiona can find her brother frustrating at times and enjoys going on weekends organised by the autism support group for siblings.

 

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

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Alison' He is healthy. He is well. He is the most loving little kid that you could possibly want.
Tony' When he wants to be yes. He can be a pain in the neck.
Alison' He was then but he is a lot, lot better now.
Tony' When he kicks you in the shins and calls you horrible names then yes, he is great isn’t he. Yes. Terrific [laughs].
Alison' He has his moments yes [laughs].
Tony' Yes, about three a day normally.
Alison' Yes, but he is going through this phase at the moment with me about how much he loves me. Because every night I put him to bed and I then say “Goodnight. God Bless. Love you.” And as I am walking off he will go, “Love you more.” And I go, “No, you don’t. I love you morer.” “No I love you morer. I love you two and a half million.” And I say, “Well I love you two point seven six one four million.” “No but I love you twenty three two point seven six million then.” And it just goes on and on and on. And oh it is his big thing at the minute about how much he loves me all the time which is quite nice really. After all the time he used to tell me he hated me. Now all of a sudden he loves me you know.
Tony' He still tells you he hates you when he is told to do something he doesn’t want to do. When he can’t have a chocolate biscuit because it’s five minutes before dinner.
Alison' He has got this thing, because they do a merit system at school. They are doing merits for doing good things at school so if I do anything wrong or if Tony does anything wrong, or Fiona or whatever, and he well wrong in his eyes that he doesn’t agree with, that because we have said no he can’t have something, then right that is it you are losing a merit. That is it we have lost a merit haven’t we? We are in trouble.
Tony' Yes. Try not to be disappointed. We get on with life.
Alison' Oh well never mind. I will have to lose my merit. Never mind. You know. Bless him.
Tony' Yes. Bless him.
 

Alison and Tony noticed how their son’s development differed to that of his sister.

Alison and Tony noticed how their son’s development differed to that of his sister.

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Alison' We first noticed things.
Tony' I think Nathan was probably about one. We knew that there was …
Alison' I think it was a bit earlier than that actually because we kind of noticed that Fiona was sitting upwards at 7 months – I mean he wasn’t was he?
Tony' No.
Alison' But we just put that as a developmental thing.
Tony' When Fiona was quite a fast developer but with Nathan we knew by the time eighteen months came along that he wasn’t making the right development with regard to speech. We knew that we had problems. But getting anyway to listen to us was always the issue.
Alison' He didn’t walk until he was eighteen months.
Tony' He didn’t walk about he was eighteen months. He was reasonably okay with nappy training and then toilet training.
Alison' It took a while though didn’t it?
Tony' That was … it was a lot less painless then I thought it was going to be. but since about eighteen months I knew I had problems with him. And then like I say it was just really a case of trying to get somebody to listen to us. We went through all the usual routes, you know we went to see the doctors and the regional health visitors and they just didn’t seem to latch on the fact that this kid had a problem. They just thought he was under developed but there were certain traits with him that we knew ‘no it is not under developed there is something psychologically incorrect with this kid’ and we sort of felt on our own for a while didn’t we?
Alison' On our own for a very long while.
Tony' Yes. So yes, really from like Alison said from just under one to probably eighteen months we knew that we had got some developmental issues with him. But then it was a case of we really struggled to get a diagnosis and then we didn’t know where to turn so …
Alison' Well we tried to get him into the nursery school, where he is now, into the nursery but at the age of like about sort of three and a half that they go there go there isn’t it?
Tony' Hm. He wasn’t talking at three and a half. No he wasn’t talking. He was making noises and grunting and ….
Alison' We tried to get him there at three and a half and I went with him for the first day and straight away I though there is no way. He just was not ready for … all of the kids were playing in the water and he was just like a whirlwind. He was just creating havoc and he would be lashing out and hitting other kids and me and the teachers agreed that this just wasn’t going to happen.
Tony' Yes. It brings it home when you viewed him compared to other kids in his peer class. You just knew then that there, we had got big issues with him.
 

Alison and Tony’s son would fly down the length of the living room and bang his head on the door.

Alison and Tony’s son would fly down the length of the living room and bang his head on the door.

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Tony' Yes. It wasn’t anything specific that stuck in my mind. It was just he didn’t seem to be developing. There was a little lad over the road, who was probably about nine months older then Nathan, who seemed to be miles ahead of him developmentally, you know in a development sense. And then we got Nathan, who seemed a bit a small. He just didn’t seem to be … it wasn’t just speech. I mean the big thing would be, you would notice his speech but there were other things as well. You know he wasn’t, he wasn’t doing the things that kids of that age you would expect. He wasn’t taking an interested in ….
Alison' He used to get very frustrated with things. Didn’t he?
Tony' Yes. Yes. He did, quite a lot.
Alison' When he was a bit older. A little bit older and obviously he wasn’t speaking when he should have been speaking at that age, maybe even at about three when he really should have been speaking and he wasn’t and when we were going up to the Family Support Centre do you remember, he had a permanent bruise on his forehead.
Tony' yes he did.
Alison' And a permanent lump on the back of his head.
Tony' Where he would smack himself.
Alison' He would stand where you are now and run all the way down and just run into the patio door and smack his head on the patio door and then throw himself on the floor and bash his head on the back of the floor. And he would lie on the floor bashing his head on the floor and I took him to the doctors because it frit me to death. I thought God what is he doing to the inside of his head. And the doctor was saying, you know, the skull is a lot, lot harder than you think and don’t worry. He might be bashing himself about but he is not going to do too much damage. I used to think, I hope you are right.
Tony' Yes, it didn’t look like it at the time.
Alison' I used to think people must think I am a terrible mother you know. You know, I am sort of like there is this kid with a permanent bruise on his head and he is screaming and shouting and I am not doing anything about it. You know because people just look at you and think oh a badly behaved child. What a terrible parent. And you are thinking …
Tony' Hm. Yes. You get some strange looks out of people don’t you but…
Alison' …I would like to see you cope with this.
 

Alison and Tony had gone to the doctor’s on several occasions but were told not to worry; their...

Alison and Tony had gone to the doctor’s on several occasions but were told not to worry; their...

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Did you discuss... I mean did you talk to each other sort of saying, I am a bit concerned.
 
Alison' All the time.
Tony' Oh yes. We had nowhere to go.
Alison' There was quite a few things like you know we said, “Could he be autistic.” Well like I say we used to think well autism was the kid in the corner that didn’t speak and didn’t look at anybody. So we kind of put that to one side because we thought well he can’t be because like I say we didn’t realise there was this massive spectrum of it. And always has he just got learning difficulties and has he just got speech difficulties. We used to talk a lot about it didn’t we? But we didn’t really know where to go. I mean, like I said, we had been to the doctors on several occasions, because I used to say to them. He does this and he does that, but they just didn’t seem to be too bothered about why he was doing it. They were just a bit more concerned with ‘well don’t worry’. He could be all right.
Tony' Yes. They didn’t bother looking any deeper and as I say it wasn’t till he got to nursery when were referred back to [hospital].
Alison' When they mentioned about the hospital.
Tony' Yes. That’s when we got the diagnosis.
 

Alison and Tony felt differently about the diagnosis; Tony says it was cold comfort, while Alison...

Alison and Tony felt differently about the diagnosis; Tony says it was cold comfort, while Alison...

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So what did you think when you were in the room with her and she told you?

 

Tony' She just confirmed what I knew I think. I knew anyway. I had known for years before…
 
Alison' He is not as emotional as I am.
 
Tony' No I had known, I just you know blimey you know the kid’s autistic.
 
Alison' In a way …
 
Tony' Get on with your life you know. Just help him.
 
Alison' It was nice to get a diagnosis so we could finally say, thank God for that. We know he has got this.
 
Tony' Yes that was sort of cold comfort wasn’t it. The fact that he was …
 
Alison' And then again I was a bit oh God, you know.
 
Tony' There was the fact that he had actually been diagnosed with having a condition where it is classed as a disability. Yes so, it was just, it just confirmed what I knew really. I just knew that. And we got the diagnosis and it was just confirmation of what I had been suspecting for a while anyway. So Alison was devastated when I told her but I was right you know we have not been told he has got leukaemia or cancer or anything like that you know. It is not like he is going to die tomorrow. So you just have to cut your cloth accordingly with life don’t you. You just get on with it and yes, he is autistic and you take that into account with everything that we do as a family.
 
Alison' It kind of started again from there didn’t it then? We kind of, you know, started anew then. Now is this is it now because before we had been away on holiday or we had been shopping and he would be having his little tantrums because he did use to have terrible tantrums didn’t he?
Tony' Yes. Yes he did.
 
Alison' And you could see people looking at us having you know… and thinking like I said, you know, bad mother, you know, horrible little child with a tantrum. Can’t she do something with him? He needs a goods smack sort of thing.
 
Tony' To which your response is, “Well I am glad you are perfect.”
 
Alison' And you know people would sort of do things and I would have to apologise to people and say to people, “Look I am sorry he has got learning difficulties.” But then all of a sudden I could say he was autistic, which was…not a lot of people understand what that means but at least you have got a diagnosis.
 

Tony and Alison say there is nothing worse than “people gawping at you when your child is having...

Tony and Alison say there is nothing worse than “people gawping at you when your child is having...

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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.
 

Alison got T-shirts printed saying “I’m not naughty, I’m autistic” to make going out easier.

Alison got T-shirts printed saying “I’m not naughty, I’m autistic” to make going out easier.

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Alison' And we have got these… Because I am a member of the National Autistic Society, so we have these little cards that I got on the website and it explains about – it says this young person has autism and explains that there could be little outbursts and please be patient and understanding with us, you know. So if we ever do go out as a family, which we don’t go out an awful lot all four of us together do we? Not for meals and sitting such and such, not for …
Tony' Well we used to try and get once a night a month just to go out to a local pub or restaurant or something just to have some family time.
Alison' But he’d run around wouldn’t he?
Tony' Well no, he wasn’t too bad.
Alison' He did sometimes though.
Tony' Now Fiona is 13, she is not too fussed about going out with her mum and dad and brother anyway. So she is more bothered about lads and her mates. So…
Alison' So we’ve had these cards and so you can just give them these cards and sort of explain things. And a few years ago as well when we went on holiday, because I got sick of people sort of like I say looking at us and gawping and sort of pointing the finger you know. I had some T-shirts printed. All different colours, red, green, blue, white, all with different coloured writing on to match whatever he was wearing, different outfits. And it just simply said on it. “I am not naughty. I am autistic.” And do you know the amount of people that come up to us because of those T-shirts.
Tony' Yes.
Alison' We were in this restaurant one night, having a meal, the four of us, nice restaurant, one of these places, where abroad, you know where you have got your bouncy castles for the kids to play afterwards so you can sit and have a drink and everything. And this family just came and starting speaking to us. The family that was right next to us and it turns out their little girl was autistic and they had got [name] who was autistic. You know. And we just ended up swapping details and having a right old rattle with them and just because they had seen Nathan’s T- shirt. You know.
And the holiday club as well. The kids club that was there, they had seen the T-shirts and one of the girls who works in the kids club her mum just happened to be over for the weekend visiting her and she used to work with special needs children and this girl came up to me and she said, “Oh you are Nathan’s mum aren’t you?” And I said, “Yes.” And she said, “My Mum came at the weekend and she saw your T-shirt that you had printed and she said what a fantastic idea.” So she thought that was really good idea. She said, “If only more people would do that, you know, and let people see that kind of thing and understand it.” And I was like, “Oh great.” You know. And I thought oh there is this alarm gone. I am glad I did this now. And I mean he still wears these T-shirts every now and then doesn’t he?
Tony' Yes. Yes he does.
Alison' And I took him. Only local round here he happened to have one on because he went through a phase of always wanting to wear them didn’t he?
Tony' Hm.
Alison' He always had these T-shirts. All different coloured T-shirts and like when you have got writing on your T-shirt people do look at it, you know, and they think oh what does that T-shirt say? You know. And this bloke once, stopped us in a shop and he went, “What does it say, ‘I am not naughty…’” he went, “Oh, ‘I am autistic’.” And at first he was
 

Alison and Tony discuss how the “world is a strange place when you have not slept for three days”.

Alison and Tony discuss how the “world is a strange place when you have not slept for three days”.

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Tony' He never slept Nathan didn’t. He never slept. He used to get in bed with us from about the age of about one and it progressively, as he got older it got earlier until at one stage he was getting in bed with us at about 11 o’clock but because we had been running after him all day, you need a night’s sleep, because he absolutely tires the life out of you.
Alison' And he would either sleep with us or one of us would have to go and get in bed with him.
Tony' For instance on his 6th birthday, you know, all the psychologists said oh you shouldn’t put a TV in a child’s room. It is bad for them and all this, that and the other so we thought stuff it, we will put a TV in his room just to see what happens.
Alison' Well we did that….
Tony' And ever since we put a TV in his bedroom stayed in his own bed.
Alison' He didn’t sleep for six years.
Tony' Just stayed in his own bed. Put TV in his room and we never got a wink out of him.
Alison' The reason we did it is because Fiona had got a TV in her room and he used to go and sit on her bed and watch it didn’t he?
Tony' Yes.
Alison' And we thought right for his birthday we will put a TV in his room.
Tony' For the sake of a hundred quid from Asda we will give it a try and see what happens.
Alison' And he absolutely loved it. Didn’t he? And that’s it, ever then he used to go to bed at night, put the telly on and fall asleep and it got, we got to the stage where he would fall asleep watching it, so we would have to go in and switch it off. But then now, I mean when it got to the stage where it was just sort of ‘oh have had enough of that now’, switch it off and turn over and go to sleep and we thought why couldn’t we think of that before? I can’t believe having a TV in his room has made him go to bed and go to sleep.
Tony' It goes to show that listening to professionals isn’t always a good idea. You know.
Alison' Well I know, but the thing is you know you will do anything for some sleep you know and you feel rotten when you have had no sleep as a lot of people know and you will do anything to get some kip.
Tony' The world is a strange place when you have not slept for three days, you know. I am sure you know with five kids yourself. So …
Alison' Absolutely. As a lot of people will know. Yes.
Tony' Absolutely yes.
 

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

Tony and Alison discuss how teaching Nathan geography or French is no use to him but learning to...

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Tony' I think the thing with him going to the special school as well because they don’t just teach ….
 
Alison' Education wise.
 
Tony' … bang in geography and French which would be no use to Nathan because he wouldn’t understand it anyway. That should teach him how to work his change out and what bus to get on if he wants to go to [town].
 
Alison' Yes. They teach him social skills which with the social skill… I mean there is only so much we can do. Or that we think we can do. You know we are not teachers and you know we do what we can.
 
Tony' He doesn’t listen to us, we are his parents and he doesn’t listen to us anyway. But if it is his teacher that is telling him, he will listen to it.
 
Alison' He will listen to it and take it in, yes. But they teach him the social skills. They take them out and they play golf with them and they teach them how to be around other people you know and remember their manners and be nice to people and … just how to basically go out in the world and live. You know, and survive which is what he needs.
 
Tony' Yes. It is a very practical school as well. They teaching them things like bricklaying and plastering and they have got a couple of poly tunnels and that sort of thing so they do a lot of vocational activities, but no I think the positives are that I think he certainly pulls us together as a family unit.
 

Alison and Tony discuss the use of Vallergan to help their son sleep.

Alison and Tony discuss the use of Vallergan to help their son sleep.

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Tony' One good thing that they gave us from the hospital was they put him on a prescription to help him sleep as well so they gave him some Vallergan which is …
Alison' To help him get to sleep at night.
Tony' Just sort of calms him down a bit an hour before bedtime.
Alison' Well we give it to him on school nights. I don’t give it to him on a Friday or a Saturday.
Tony' No.
Alison' I don’t like to give it to him all the time.
Tony' No. We give vodka on a Friday and Saturday [laughs]. I can’t deny …
Alison' No I don’t give it to him on a Friday or Saturday or usually during the holidays because I don’t like to give it to him all the time.
Tony' No we don’t want him to become dependent on it. Or we don’t want to become dependent on using it as a …
Alison' If I don’t give it to him. If I don’t give him this medicine he can be up till midnight. But then that is okay. He is in bedroom but he is awake.
Tony' He is not a pain. He is not creating havoc.
Alison' But if he doesn’t have it, I can’t get him up in the morning.
Tony' That is the trouble yes.
Alison' If he doesn’t go to sleep at night he won’t get up in the morning that is why I have to give it to him otherwise he would never get up in the morning.
Tony' And for a child that didn’t use to sleep when you try and get him up in the morning, this kid is out for the count. He is unconscious. His head back, mouth open, snoring like a little, like a pig isn’t he and you can’t move him. Honestly [laughs]. 8 o’clock in the morning you can wring a flannel out on his face and he just sleeps through it [snores]. Yes, just lying there snoring and grunting.
Alison' And I’m like “get up!”
Tony' Yes right. What is it dad.
Alison' He is just a grumpy kid. I used to be a right old grump in the morning. And he is just the same. He doesn’t like getting up in the morning.
Tony' None of us like getting up in the morning particularly.
Alison' His sister is the same. She is even worse.
Tony' Yes she does take some shifting. But... yes. So if you can’t get him to sleep by 9 o’clock at night, you know you are going to have trouble shifting him in the morning.
 

Tony and Alison were bemused when their psychologist told them not to bring Nathan to the...

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Tony and Alison were bemused when their psychologist told them not to bring Nathan to the...

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Tony' Yes, we had to go back and see the consultant there. Her gaffer she wanted us to see the consultant there and then the consultant referred us to their psychologist. Child psychologist, and then she just give us some tips and …
 
Alison' We used to go and see her a bit really …
 
Tony' But the basic truth was that yes he is autistic and you have just got to get on with your life as best you can really, if you know…
 
Alison' I think we kind of got the wrong end of end of the stick about that. I am not really sure, because when we first started to go and see the psychologist, we took Nathan with us. We took him out of school and took him with us. But every time we went they kind of let him go off somewhere else and play with somebody and it was just me and Tony in there and then eventually after we went she said, “You don’t have to bring him with you, you know.” And I thought well, surely it is about him, it is not just about us, it is about. I mean and she used to sit there and have good chat with us didn’t she, you know, and I don’t know about you. I mean well we said didn’t we when we got back, what did you get out of that? And you sort of said, “Well not a lot really.” And I am like, well no, I didn’t get a lot out of it either. I mean she wasn’t really telling us an awful lot that we didn’t already know.
 

Alison used to read information about autism she was given when her son was diagnosed in bed in...

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Alison used to read information about autism she was given when her son was diagnosed in bed in...

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I used to go to… when they first gave us the diagnosis they gave us all these A4 leaflets and everything and you would be down here and I would go to bed and sort of take a cup of tea up and lie in bed and read these things and I used to sit there in tears sometimes reading these things, you know. And I used to think oh my God, the things that people go through. What is going to happen? Is this going to happen to us? And all sorts of questions you know and I used to sit there in absolute floods of tears and he would come up and I be like ooh. Hold me book up so he couldn’t see me.  I mean he must think I am a right soft thing, you know.
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