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John and Lynne - Interview 47

Age at interview: 60
Brief Outline: John and Lynne's younger son, Gavin, was diagnosed with autism when he was 14 years old. He lives in a residential facility attached to his old school and John and Lynne feel he has had excellent support over the years.
Background: John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.

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John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32.  Their younger son, Gavin, was diagnosed with autism when he was 14 years old.  Gavin’s speech was delayed when he was younger and he did not seem to understand emotions.  A doctor at a major hospital arranged for all the people involved in Gavin’s care, including his parents, teachers, educational psychologist, speech therapist and GP, to meet and discuss Gavin’s progress.  Then during primary school his parents felt that Gavin was very well supported although nobody realised at the time that Gavin had autism.

John and Lynne decided that Gavin would not be able to cope with mainstream secondary school and found a residential school specialising in communication disorders.  Gavin went there until he was 16 and during that time was diagnosed with autism.  Gavin moved to another residential specialist school where he stayed until he was 19 and then moved into the adult facility connected to the school.  He comes home sometimes at weekends and in the holidays.

Whilst they have had some negative experiences, overall John and Lynne feel that Gavin has had excellent support over the years and they describe his current home, which he shares with two young people, as an extension of their family.  Gavin attends college, does a paper round with his support worker and some community service.

If the placement was to stop, John and Lynne both feel that they would find it difficult to have Gavin back at home.  Lynne would fear Gavin’s outbursts and John would worry about keeping Gavin occupied all the time.  They both feel that their trust in Gavin’s placement has greatly helped in dealing with the situation. 

Gavin has a tendency to self harm and used to be aggressive towards others though this is now managed effectively with medication. The most effective strategy to help Gavin through his anxieties has been to drive him around in the car which helps to calm him down.  Gavin can look after himself but has to be reminded constantly to do things, like shave, make sandwiches, get dressed and bath himself. 

Lynne and John work as a team and Lynne also uses a helpful online forum where she could discuss different issues with other parents.  John often feels frustrated because he does not know what is going on in Gavin’s head. Both parents are also concerned because Gavin tends to worry about things which happened many years ago, such as dropping a pencil down the drain at primary school.

 

Lynne describes how Gavin would “do the opposite to what you would expect” and had lengthy...

Lynne describes how Gavin would “do the opposite to what you would expect” and had lengthy...

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What sort of things was it about his behaviour that …
 
Well when he was very small there were lots of things that made us very anxious. He was slow in developing speech. He had very, very odd behaviours, such as doing the opposite to what you would expect. So when it was cold he would take off rather than put on clothes. One particular instance I remember was when it was snowing, he actually took all his clothes and ran out into the snow which was quite upsetting for me. Another thing he would do when he was quite young, was he would get the wrong emotion, so that if he fell he would laugh or if somebody hurt themselves he would laugh and he seemed to do the opposite one, he didn’t seem to know which emotion to use. I remember one time he fell and right flat on his face and he had an awful state, you know, nose bleed, terrible, and he just kind of got up as though nothing had happened and that was very, very scary. He would also do things like have screaming fits for a long, long time, you know, may be a couple of hours, something like that   and those were really nasty times I remember.
 

Lynne sees autism as 'a signpost' which indicates her son has a right to extra support.

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Lynne sees autism as 'a signpost' which indicates her son has a right to extra support.

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Lots of people are against having a diagnosis, aren’t they, or they are against having a label and I would certainly in my experience, just disagree with that entirely. There is a quotation from somebody [name], I think it is, [name], who said that autism is not a label it is a signpost and definitely it is true. You need some description to help you get that the help or the provision that you need and it is no use having something that is waffly, you know, like all inclusive special needs. You know that is useless really. You need something more specific. You know if you say this young person has autism then you know the problems associated with that.
 

Lynne finds it difficult if Gavin needs to go to a toilet when she is out in public with him.

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Lynne finds it difficult if Gavin needs to go to a toilet when she is out in public with him.

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And one of my big anxieties is when I am out with him and he needs to go to the toilet. I have to let him to into the Gents and I can hear him chuntering away in there. You know, what are people going to think? And you know, the other anxiety is because he is quite a handsome fellow and somebody could just go off with him, or he would go off with anybody. He just would wouldn’t he? I am sure he would. Although he says you mustn’t talk to strangers and all the rest, it is just words. He would, somebody, could, could take him off somewhere.
 

Lynne will talk to Gavin in a way that lets people know 'that something is not quite as it should...

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Lynne will talk to Gavin in a way that lets people know 'that something is not quite as it should...

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Lynne' Yes. I, you know, I used to get quite cross with people when people used to make comments about, you know, his behaviour or something like that and I used to get a bit shirty back. But I don’t any more, I mean he looks so normal.
John' That is the problem. It is a problem he does look so normal.
Lynne' How are people to know? How are people to know, you know, that there should be anything out of the ordinary? In fact now people are inclined to be frightened because he is very, he tends to mutter and chunter and walk up and down.
John' He is 6 foot one.
Lynne' Yes and you know, he’ll bang things maybe, as he is going past and people, you know, look at him, and clearly are a bit worried. So I frequently will say something or I will talk to him – John you do this as well in public - talk to him in such a way that people around realise that something is not quite as it should be and if they know that you are with him, then people are reassured and it stops any problems arising.
 
The only think I sometimes forget to do, if I am going into shops I forget, sometimes to say as I am going in to say to somebody, you know, “He is with me. Don’t worry”, you know, “He is with me. He won’t touch anything.” And sometimes if I forget to do that then we get the security people [laughs]. It happened a couple of weeks back in Sainsburys. Two security people came rather anxiously and said to me, “Is that gentleman with you? And is he all right?” I said, “Sorry, I forget to … you know, tell you as I came in.” But, yes, that happens from time to time. But it is all right. You get used to it.
 

John finds it hard to decide whether or not to tell people that Gavin has autism.

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John finds it hard to decide whether or not to tell people that Gavin has autism.

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There is one thing I do find quite difficult. And that is the decision whether or not to say to a stranger, that this youngish man with me, has autism. I suppose part of me is saying, well would they then have enough of an idea what that is and there is no way I am going to use the word ‘mentally handicapped’ or whatever is the pc term these days. But a big part of the problem is a feeling of some embarrassment in front of Gavin for sort of labelling him in his presence as being autistic. Though yes, we will on occasion, very occasionally talk, you know, use that word as between Gavin and me. It is not, it is very occasionally, but I still feel a bit difficult in his presence. I mean generally yes, it is, and I suppose it comes back to the fact that I haven’t a clue really what is going on in Gavin’s mind. What effect anything is having on him. So that is, you know, that is an issue.
 
I mean there is another thing which for Gavin is a really major issue and it is what upsets him a lot, it is memories of things that he has done wrong, or bad experiences which have happened around him. Maybe twenty years ago, and he will keep on bringing them up and he will work himself into quite a state, that can lead to, you know, verging on self harm, if not just getting over that boundary. It is because maybe there is a sense of guilt. I don’t know what, really what is going on in his head. He is really upset by this memory of something absolutely trivial like breaking a pencil.
 

John and Lynn's son Gavin can do most things like shave, wash and dress, but unless somebody ...

John and Lynn's son Gavin can do most things like shave, wash and dress, but unless somebody ...

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What is he like in terms of self help and road safety and looking after himself?
 
Lynne' He can do most things but never alone. He always has to have somebody there, as I describe it, pressing the button. If you don’t press the button it doesn’t happen. So he can do most things, he can shave, he can wash, he can dress, bath himself, he can make sandwiches, he makes cups of tea. As long as you are there, you know, just reminding him, he can do it but the minute you step back out of step, he just stops. So this is the, this has been the main thing throughout his education, it always seems to be the aim to support a child and then gradually withdraw the support so that in the end the child can function or do things on his own. With Gavin’s particular disability, no way. It can never withdraw. The particular support he needs he will never be able to function unless he has got somebody there just pressing that button. You don’t have to do things for him, you just have to be there to …
John' If you keep reminding him he will carry on doing it.
Lynne' Have to keep reminding to carry on doing it.
 
And what about when he is out, can he sort of cross the roads, or…?
 
Lynne' No, not without somebody being there.
John' Yes, I mean we have slightly differently attitudes between us. I am more willing to take a risk with a Gavin than Lynne is basically. I still have to admit that crossing roads is a very dicey business as far as Gavin is concerned.
Lynne' Hm.
John' On what would be an easy road to cross, yes, I would trust him to do it. He will stop, and you know, look in both directions.
Lynne' Yes, because I send him out to the post box up here, don’t I?
John' Yes crossing one road.
Lynne' …which involves crossing a road.
John' Yes. But you if he sees any moving car from a distance he will not cross the road. He cannot predict from how far away a car is and how fast it is travelling. He has no sense of how long it will take to get to him relative to the time it will take him to cross the road. So you know he will play ultrasafe but there is always the danger that he might completely forget to do anything, you know, to look right or left and recognize that there is that possibility of danger with Gavin.  …So no, we wouldn’t really trust him to cross roads.
 

John describes how difficult it is not knowing what his son is thinking or feeling.

John describes how difficult it is not knowing what his son is thinking or feeling.

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Now, it seems strange to sort of talk also about literacy with Gavin. Gavin can read. He can read a page of a book. In fact I took a lot of time, took a lot of pride in doing a lot of teaching Gavin to read when he was younger, until I suddenly realised that all he was doing was reading out the stuff in front of him and hadn’t a clue what he was reading about. And if you asked him any question about what he had just read, he couldn’t tell you. Nothing had meant anything to him even though he had read with pretty perfect kind of intonation and syntax. Yes it all came together in a grammatical sense, but in terms of semantic, what it really meant, he really had no idea at all. Okay so he can read. He can also write. And he will write. Gavin will write when he is back home and it is one way, it is an easy way of keeping him occupied actually.
 
And, it is too much of a temptation to say “Do you want to write Gavin?” Something to do, having a pad and a pencil. But sometimes in that writing, quite often those writings is outpourings of his frustrations. The same kind of things that he might tell you and sometimes I’ve, very occasionally, I have just sort of got a bit alarmed and really wanted to stop the writing, because I have a feeling, well I really don’t know. Is it therapeutic for him to put it down on paper or is he just working himself up? And I don’t know, but he has outpourings and you will glimpse sort of inner great disturbances going on in him and you don’t know what they are.
 

John and Lynne recall a funny experience and think that Gavin has fewer tantrums now.

John and Lynne recall a funny experience and think that Gavin has fewer tantrums now.

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John' Well you do get quite a lot of funny moments.
Lynne' Oh yes. Hysterical.
John' And some of the bizarre things you find hysterical. Like in the tranquil island of Iona which is just off Mull. Yes in the abbey grounds there in sort of garden of peace…
Lynne' The garden of peace.
John' Gavin had a tantrum….
Lynne' Oh yes!
John' You know, you just went into fits of laughter with the incongruity of it, you know.
John' Yes, you can have a good laugh about it.
Lynne' Yes you can.
John' It is quite innocent.
Lynne' He hasn’t had a tantrum for a while has he?
John' No those were the days of the tantrums.
Lynne' Those were the days of the tantrums yes.
John' We call them tantrums.
 

John and Lynne describe how Gavin is on a carefully controlled low dose of medication to help him...

John and Lynne describe how Gavin is on a carefully controlled low dose of medication to help him...

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John' But there has also been, problems we haven’t really mentioned with Gavin, which started really about the age of 15,16, adolescence I guess.
Lynne' Sooner than that, it was much sooner than that.
John' Was it, well okay, but it was a tendency, and I was much more conscious at that sort of time, a kind of self, self harming tendency. And he … I suppose the worst and probably the most obvious model was smashing his head against the wall in sort of his room that he, his bedroom, there were dents all over the wall in the plaster work where he had hit it so hard.
Lynne' And the glass as well. He smashed the glass.
John' Yes. And it seemed, I don’t know, it seemed to be associated with some kind of frustration.
Lynne' Or anxiety.
John' Anxiety, frustration.
Lynne' I don’t know.
John' It was brought under control by medication. He is still on medication on what we are told is a very low dose and just enough to enough to put him on the borderline, more would make him more zombyish, less and then he would be more likely to explode. He still occasionally, can, very occasionally, can move towards sort of banging his head. Very, very occasionally, but you know, more, more frequently, you know, he will get agitated [makes rapping noise]. Rapping on something, you know, banging, banging, on any kind of surface, banging on any kind of surface and so it’s a sort of minor form. Okay so he has balanced on this kind of knife edge, you know, by the low, the exact low dose, carefully controlled low dose of medication that he is on. The… but there was, especially kind of the adolescence time, there was a time when he had some of his aggression was directed towards others, and I experienced some of it at that kind of stage.
John' It wasn’t a period that seemed to last that long but, you know, it was particularly worrying why it happened and, and he would, you know, he would sort of hammer his fists on my chest. I mean he had no skill about the way he was hitting me and so it was, in those days I was, you know, a fair bit heavier then him, so it was no physical problem, but you recognize the potential that, you know, if this sort of thing was going to continue in the future as he grew bigger and older, this could be a real danger problem. Fortunately it seemed to subside, you know, after adolescence.
Lynne' I still feel, you know, he is pretty unpredictable and he has had such a good day today it is very easy to sort of lull yourself into a false sense of, you know, security because tomorrow morning he could get up and be banging and, you know, could be very, very anxious and I might have a totally, totally different day tomorrow.
 

John and Lynne discuss how difficult it would be to have Gavin living at home in the future.

John and Lynne discuss how difficult it would be to have Gavin living at home in the future.

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Lynne' Because when … I mean one of the things if I really think about it, and I mean it is a really scary thought, but if the funding was removed and he was say, left to us, to look after. I don’t think I could cope with it.
John' No. There is no way.
Lynne' You know to be quite honest and truthful, there is no way I could cope with it.
John' And we’d have different issues about this, I think. I mean for you, you know, you would be fearful of outbursts and your ability to control them.
Lynne' Yes that is right. I would be terrified.
John' I wouldn’t be so worried about that but I can’t help feeling guilty about the need to keep Gavin occupied and if I am not doing all the button pressing upon on.
Lynne' That is right.
John' Constantly attending to urge him to do something constructive,
you know, that I feel …
Lynne' We are both like this aren’t we…?
John' I feel guilty that I am not keeping him….
Lynne' But it is great to do it when he is away and comes home like he is at the moment and we can give him all this attention, and we really enjoy doing it. But then…
John' But you can’t keep it up.
Lynne' But you can’t keep it up. You know, at the end of … Sunday we will take him back and there will be, you know, we will have time to ourselves again. But when he is home we just give him loads of attention and it is good. So yes, it is easy at the moment, because its enjoyable. We enjoy having him around. We enjoy looking after him. We enjoy his good moments and he gives us great pleasure, but the thought of, you know, us being here 24 hours and someone… and the other thing of course, is that we have no, nobody who had baby sit. It is like having a 28 year old toddler. We could never go out, we could never, you know, do anything, other than have, have him which is a very scary thought.
 

Lynne found an internet support group better than anything she had ever read.

Lynne found an internet support group better than anything she had ever read.

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Is there anything that you would recommend to people that you have found really useful?
 
Lynne' …oh the most useful thing I found was the internet support group to be honest. That was the most valuable thing I found. When I first discovered the computer, there was a British autism group, I haven’t joined for a while, I have lapsed. I have had my head in the sand for a little bit [laughs] but I thought that was wonder.
 
John' Do you mean NAS?
 
Lynne' No I don’t NAS. No. It was it was autism support group on the internet.
 
John' Oh right. Yes. Hm. Hm.
 
Lynne' And you could be in daily conversation with people, other parents - professionals are on it as well - and there was always this chat came backwards and forward and that was the biggest, I would say, the biggest help to me ever was finding that. Better than any book or anything I have ever read. Much more so because all these kids are individuals and you can’t… it is like a blind person, you can’t say that all blind people alike, and that is an obvious one, well autism is the same. They are not all the same, so what you read about one person isn’t particularly helpful to you. So…
 
John' Yes, and, and, no.
 
Lynne' So that is what I found the most helpful was the internet support group, you know, where I could, you know, you chat to somebody every day or three times a day or, you know, whenever, You would always email back or, there was always something going on. Much better than anything.
 

John and Lynne have supported each other but also drawn support from knowing that Gavin is in...

John and Lynne have supported each other but also drawn support from knowing that Gavin is in...

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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 Lynne’s 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. We’ve approached it... we’ve 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.
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