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Having a grandchild on the autism spectrum

Bryan and Moira: Interview 08 & 09

Age at interview: 72
Brief Outline:

Bryan and Moira's oldest grandson was diagnosed with autism when he was three years old. He is now twenty-one.

Background:

Bryan and Moira are both retired. He is a former naval officer whilst Moira used to work part-time as a shop assistant. They have two children and three grandchildren. Ethnicity/nationality: White British.

More about me...

Bryan and Moira’s grandson was diagnosed with autism when he was three. Moira describes how she felt guilty when she learned of his diagnosis because, despite the reassurances of her daughter, she felt that somehow or other it was genetically her fault. Bryan’s first response was denial and it took him a long time to accept it.
 
According to Bryan, their grandson is “the apple of his grandmother’s eye” and “a real pleasure to be with”. He enjoys staying with them at their home in London and particularly enjoys travelling around on the Tube. They describe him as very literal and he could be aggressive when he was younger because, they felt, he became frustrated.
 
According to Moira, their experience with their grandson has led them to be more understanding of other peoples’ problems and that it may have caused them to stay closer as a family. 
 
Both Bryan and Moira agree that, at the time of their grandson’s diagnosis, they would have valued some information based on the experiences of “other people who have been there and done that” because they could provide more help than “a list of facts in a paper or a book”. They were offered no support to help them come to terms with the diagnosis, but felt lucky that they are a close family who all support each other.
 

Bryan and Moira thought their grandson was just very quiet, but there were a 'few jangling notes about how quiet'.

Bryan and Moira thought their grandson was just very quiet, but there were a 'few jangling notes about how quiet'.

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Bryan' When [Grandson] was very young, an infant, he was always quiet. Most babies cry and sometimes cry for quite long times. [Grandson] never did. [Grandson] was placid.
 
Moira' He did have temper tantrums. He did have tantrums sometimes. He did cry sometimes.
 
Bryan' Yes, but not nearly as much as other children, and certainly not as much as…
 
Moira' His brother.
 
Bryan' His brother, or indeed his uncle or indeed his mother for that [name]. He was much more placid as young one.
 
Moira' He was a placid baby. He was, yeah. Placid.
 
Bryan' I mean unusually so. Noticeably so. And so I think we got, we got to feel actually at the origins I think, aren’t we lucky, we’ve got a quiet one, you know. But then there were just one or two little jangling notes about, ‘how quiet?’ Nobody actually thought at that stage that there was anything, you know, particularly significant. Just a quiet baby, one that didn’t cry as much. Weren’t we lucky? And it wasn’t until much later that we began to realise the problems were deeper than that. 
 

 

Bryan was in denial for some months after his grandson's diagnosis and said he didn't understand very much about the condition.

Bryan was in denial for some months after his grandson's diagnosis and said he didn't understand very much about the condition.

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How did I feel? Well, first of all, I guess, like many people, I was in denial. The first thing was no, okay, he’s a bit quiet. Yes he’s a bit boisterous and yes, maybe not as quick as some other children to, we saw that anyway. But on the other hand, look at how quickly he reads and how well he reads, and you know, he’s well in advance of other children. So yes, all the usual symptoms of denial. Then his behaviours, his odd behaviours became, began to develop, much more clearly. And I was forced, if you like, into a realisation that the problems were not simply of other, you know, other people’s imagination, there really was a problem.
 
But there was a period for six, seven months, something of that sort, I think, maybe a year, where I chose not to accept the diagnosis. Now, in my own defence, if I have to defend myself, I suppose there is, there is an element too, at that time, the very word autism, was not well understood and I certainly didn’t understand it. I had no understanding of how profound or otherwise it would be, or could be. And so it was easier, if you like, to walk away. Because he was just a little odd, that’s all there was to it. And then people started putting other labels on like Asperger's, which is where, I think, they started. I thought well yeah, okay I can live with that. That’s better than autism isn’t it, I think? And I was much more concerned about labels than I was about the reality of the condition. 
 
And it took me a long time, a very long time to really come to what I think is a reasonable understanding now, although I have to say [Grandson] still puzzles me from time to time. He still throws a wobbly that I think “where did that come from?” And my understanding of his condition is far from perfect. But I am much more at ease with it now. [um] But still looking for ways of helping him. [um] And I’m not sure there are any actually and that’s the distressing part of it. [um] For me anyway, I think that’s the most distressing part of it. 
 

Moira thinks autism is in her genes and felt guilty for a long time.

Moira thinks autism is in her genes and felt guilty for a long time.

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But one of the main things with [Grandson’s name] at the beginning was the coming to terms with the fact and the guilt that you feel when he was diagnosed. 
 
And the whole family went through, as to well people say you try to pretend it’s not there to begin with. And then when you’re sort of faced with it, you start feeling somehow or other it’s genetically your fault. At least I did. I think I was the one that suffered most from that and I was quite sure that it was somehow my fault. My daughter tells me it’s idiotic, but there you go [laughs].
 
No, I just felt guilty about it for a long time. My daughter said, she’s done much more research than we have, that I think it’s a fairly natural that parents to feel guilt. I don’t see why grandparents shouldn’t as well [laughs]. You know, I think that you think somehow or other it’s your fault somewhere. I think that’s a fairly natural reaction. It takes a while to get over. You have to learn to live with it. And as he kept telling me at the time, that [Grandson’s name] was still [Grandson’s name] [laughs]. Even with a tag.
 

Bryan and Moira have supported their daughter and son-in-law in the difficulties they've experienced and allowed them to vent their anger and frustration.

Bryan and Moira have supported their daughter and son-in-law in the difficulties they've experienced and allowed them to vent their anger and frustration.

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Nothing has been easy, simple or straightforward. Every single piece of help that they have obtained for [Grandson] has had to be fought for, every inch of the way, over what seemed on occasion to be an uncaring authority. Now it hasn’t always been so and on many levels the help that they’ve received has been given, but it has always seemed to be bureaucratically a nightmare, and, therefore, one of the roles that Moira particularly has fulfilled and I’ve tried to fulfil is to support them in those difficulties and allow them to just vent their anger at the frustrations that they have felt in dealing with a sometimes very unfeeling bureaucracy that didn’t relate to the reality of the life they were living. And that’s been, as far as I’m concerned, probably the most important role we’ve fulfilled. We haven’t been able to do anything much more than that, but be there for them regularly and whenever and for as long as in whatever way, and so on.

Bryan reflects on how he used to try and communicate with his grandson in a way that he couldn't relate to. He has now learnt that his grandson won't hold a conversation.

Bryan reflects on how he used to try and communicate with his grandson in a way that he couldn't relate to. He has now learnt that his grandson won't hold a conversation.

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Bryan' It’s interesting actually that that first started when he was quite a lot younger, I think in his earlier teens. We found that he would very frequently repeat back a phrase that somebody else had used, maybe as much as ten or fifteen minutes early, earlier, and not in context. And it took us a little while, it took me a little while anyway, to understand this was his attempt to relate to a conversation that had moved on, which he really wasn’t following. But he wanted to. He really did want to be involved and was finding it difficult and the only way to do it was to say well Bloggin’s said that and people laughed so if I say it, maybe they’ll laugh again and I’ll be included. And it was that sort of almost parroting something that had happened, that he was striving for inclusion and couldn’t understand when it didn’t work. And I suppose I took me a little while to realise that was what it was, and not to simply say, “Oh that’s silly.” And give an inappropriate reaction which I tended to do, which was wrong of me. And I recognise it, but there you go. One reacted as one felt at the time. He has always struggled to be included. Sometimes he makes it and sometimes he really completely doesn’t. And he struggles with it, constantly. But it’s not a wish not to engage. It’s inability somehow to engage.

Bryan says that people physically make more space around them when they are out.

Bryan says that people physically make more space around them when they are out.

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Bryan' Yes, I think actually the difference is that it’s not common, I think, for people to actually approach you and say, “You ought to be ashamed of yourself, you’ve got a son who’s behaving peculiarly”. They don’t do that, but you do sense a sort of withdrawal on occasion. People round about you think, “Oh dear, what an odd family”, and sort of physically start to make more space around you and so on, and I’ve had a couple of experiences of that sort. [3 sec pause] But I mean, frankly they’re quite easy to deal with now. I think originally they weren’t.
 
How did you feel about them? 
 
Bryan' Angry I think. 
 
 

Moira's grandson invited all the hotel guests to his uncle's wedding when he was a page boy.

Moira's grandson invited all the hotel guests to his uncle's wedding when he was a page boy.

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Moira' [Laughs] but when [Grandson] was about seven he was a page boy at his uncle’s wedding and at the reception he vanished and we discovered that he was doing what he usually would do. He was at the lift and letting people in and off and he invited a party of German tourists to the reception. Fortunately, they realised there was something not quite, and didn’t descend. But the people on the desk, the reception desk told us that [Grandson] had invited all guests at the hotel to join the reception. So people did quite quickly pick up that there was something not quite right. So they tended not to be too hard on us, I think.
 
Bryan' Just as well there were fifty odd people in that bar.
 
Moira' [laughs].
 

Moira and Bryan have spent a lot of time travelling on the underground with their grandson, particularly as he is very vulnerable.

Moira and Bryan have spent a lot of time travelling on the underground with their grandson, particularly as he is very vulnerable.

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Moira' Well he doesn’t hold conversations, you don’t hold conversations with [Grandson]. You ask questions and get an answer. But he’ll never volunteer anything. You don’t have an active conversation. It’s...but one thing he does know is his way round London underground. I never have to say… we change trains all over the place and he will find the route back. He knows exactly where he wants to go. I spend a lot of time in railways stations, looking at trains, and then find a different route back. But I don’t lead the way. I just follow. But I was there because [Grandson’s] vulnerable. Because he looks younger than his age, acts younger than his age, and we’ve always felt that he was very vulnerable.
 
Bryan' Well [Grandson] has always been quite sure that the world loves him.
 
Moira' Everybody loves him.
 
Bryan' You know, there are no dangers in [Grandson’s] world at all, which is one of the dangers in his world, but he is totally unaware of that. 
 

Moira and Bryan feel that their family is a "stronger unit" because of their grandson's needs.

Moira and Bryan feel that their family is a "stronger unit" because of their grandson's needs.

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I think actually that’s true. I think it has, on many occasions and important times, made us closer. It certainly has changed my perspective about what was important. I mean like many young men I wanted to be a success. You know, and I wanted to rise to the top, and be in a position of influence and power, and so on, and I now see those things as being the illusion they always were. So, and I think working as a family has brought that realisation, which perhaps is a bit juvenile of me anyway, but there you know go, it did. So I think it’s changed us in a family in many ways for the better actually. Brought us closer together there’s no doubt about that. Is that fair?

Bryan and Moira would have liked to have heard more personal experiences rather than read 'specialist' books.

Bryan and Moira would have liked to have heard more personal experiences rather than read 'specialist' books.

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Bryan' Hm. I think actually, for me, anyway, and other people have a different view, but for me what I would have liked to have had is the sort of experience that you’re gathering now from other people who have been there and done that could, if you like, reassure me that my world hadn’t actually fallen completely apart and that there were compensations and good parts and as well as the disappointments that undoubtedly come. So I would have very much very much valued sharing the experiences of people who had gone here before. And I think I would have preferred that to textbooks on the subject, which tend by and large to be written from the point of view the “specialist”.
 
Moira' You can always get the factual, textbook information. But how, as you said, how to cope and live with it, with the shock of it. When, I think, this is, it’s the shock of diagnosis isn’t it, and facing, not knowing what you’re facing and people who have been there and done that can probably help more than a fact, a list of facts in a paper or a book.
 

Bryan says that they are less inclined "to wish for a magic bullet" as their grandson grows older.

Bryan says that they are less inclined "to wish for a magic bullet" as their grandson grows older.

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Bryan' Well I was just going to say that. In a curious, in a curious way, as we have grown to accept [Grandson] for what he is and so on, we’re less and less inclined to wish for a magic bullet you know. More and more content with the way he really is. I wish it weren’t so painful for him. 
 
Moira' If we could find ways to make it easier for him or to be sure that he was happier in what he can do and can’t do. If somebody could certainly find, not a job, because I don’t think he’d ever hold down a job, but something that he can do that he’d get satisfaction from, it would be nice.
 
 
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