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Having a grandchild on the autism spectrum

Thinking about the future

Thinking about the future was difficult for many of the grandparents we talked with, in part because they acknowledged that they would be getting older, or no longer around. It was also difficult to think about because the future contained so many unknowns; people couldn’t predict how their grandchildren would develop and grow older or the level of support that they might need.
 
“I try not to think too much about long term”
Several grandparents said that they preferred not to think about the future and, instead, concentrated “on the here and now”. They felt there was no point in worrying about something they had no control over. As one grandparent said, “Who knows? He may still catch up in some ways. But he will always be autistic. You know, there’s no doubt about that, but he may catch up in certain areas”. A few felt more optimistic about the future and one grandparent said she tended to think that the “future will resolve itself”. She had also been reassured, by talking to an adult with autism spectrum disorder (ASD), that her grandchildren would find the right strategies to manage their lives and for her to try and “chill out” about the unknown.
 

Jill tries to live in the moment and not worry about the future.

Jill tries to live in the moment and not worry about the future.

Age at interview: 69
Sex: Female
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I don’t worry because I’m a natural worrier, and if you’re a natural worrier and a natural pessimist, you learn to just live in the moment and be happy about what’s good at the moment. So no, I don’t worry about the future. The future can always turn out different, no matter what. But you do have to be aware that the future can let you down and so you have to... I keep talking about these inner resources, but I do think that inner resources are your best shield. It’s better than planning to just know that you’ve got a few ways of being happy inexpensively, ways of being grounded, which after all doesn’t cost anything.

“There is a residual concern about what happens when we’ve gone”
Other grandparents were not able to focus on the present. As one grandfather said, his grandson’s future was “always on everybody’s mind. What happens next and who will look after him when all of us have gone?” Another grandparent said that despite focusing on daily life, one always needed that “long term master plan”. Grandparents worried about their grandchildren not being treated properly or their individual needs not being met, their future level of independence and consequent living arrangements. Other concerns included not knowing how their grandchildren’s behaviour would possibly change as they grew older but, in the main, people expressed sadness that their children would be left without their support. Some grandparents expressed concerns about their own health, and ability to be around to help their children. One grandmother said her sense of responsibility over the future was such that she had “realised that I can’t be ill”.
 

Janet finds it too painful to think about the future when she and her husband may not be around.

Janet finds it too painful to think about the future when she and her husband may not be around.

Age at interview: 65
Sex: Female
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And we’re, we’re finding talking to, we’re involved with groups that my daughter runs. We have a monthly meeting of parents - my daughter runs a support group - and we have monthly meetings at an old school that’s a family centre. There is a sensory room there, an art room where they can paint and draw, toys, an outdoor play area. And my husband and I both are involved with that. I run the coffee shop for parents. And my husband and I, we make, they knock off half way through and have a break and the kiddies all get toast and juice, and a sit down, you know, a rest period half way through the morning. And so that’s pretty good. 
 
And we have quite a few grandparents that are like us that have got, you know, really involved, wanted to be involved. And my daughter calls us ‘grannies army’ [laughs]. Because you know, we’re all sort of in the same position and we’ve all mixed socially together now and meet up and have gatherings and outings and things involving the children. 
 
Sometimes it’s just the parents and grannies, and it’s really good. And so we’re trying to all of us, as grandparents and parents to the… you know be as supportive and positive as we can, and function that way, and its working quite well really. But the long-term I try not to think too much about long-term, because as I say my husband and I are both in our sixties and I find that a bit painful that when they grow up I might not be around. Sorry
 
 

Irene worries about what her daughter will face in the future.

Irene worries about what her daughter will face in the future.

Age at interview: 61
Sex: Female
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But... when a child is significantly going through autistic specific education and in there is obvious delay, you do begin to think about will they perhaps ever be self supporting or out there and I can see a time when the support. I mean my daughter is very realistic. She said, “I know Mum, people say oh well you’ve gone back to work, and sometimes there’s a bit of disapproval.” She said, “But come eighteen when the school services aren’t there, let’s hope society is advanced and there’s enough finance for there to be places for him to go to spend his day, because if he doesn’t hold down a job he’ll just be at home. And that’s a reality and then, you know, we all know, the awful things where parents with children with disability have to start looking at areas as they themselves get older. Is there path? Is my daughter’s path when I’m no longer here going to have to go down those difficult things of finding respite care? And getting her child used to may be having to moving into sheltered care and… and of course there’s nothing I can do about it and I absolutely know that she’ll do absolutely the right thing. And I’m so proud of her, I can’t say [interviewee is crying] but it’s a sadness isn’t it? I’m sorry.

 

Helen’s daughter panics almost daily about the future.

Helen’s daughter panics almost daily about the future.

Age at interview: 57
Sex: Female
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It didn’t mean we loved him any less, but it was just trying to imagine the future. And I know my daughter still panics almost daily about what does the future hold? Not while she’s around and capable. But I know that her absolute gut wrenching fear is whatever’s going to happen to him if anything happens to her and her husband? And I can’t imagine what that’s like living with that really. Although I live on the edge of that, it’s not my immediate problem. I won’t be here. When he’s say the age I am, I’ll be dead. I haven’t got to confront what’s going to happen to this little boy when he’s a man and he’s 50, 60 and 70. And they live a normal life expectancy. So there’s all of that.

A few worried about puberty and how the grandchildren would cope with sexual changes. Some of the grandchildren could be quite aggressive but were manageable because they were young. Some grandparents worried that their children would reach a point where they couldn’t look after the children and they would have to consider some sort of residential provision, a decision they knew would be very distressing for their children.
 

Helen thinks that her daughter would be heartbroken if her grandson were to go into residential...

Helen thinks that her daughter would be heartbroken if her grandson were to go into residential...

Age at interview: 57
Sex: Female
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Just what does the future… I think she looks out at the future and just wonders what on earth it’s going to look like. And I suppose some parents would just say, well okay when he’s about twelve he may have to go to residential school or something and we’ll have him back for holidays. But I just don’t think that’s in my daughter’s vocabulary, emotional vocabulary. I don’t think she would contemplate that. And I think for her to, if it became apparent that that was really the only solution for them as a whole family, because the impact of the autistic one on the other two was so huge that they had to go down that route, I think it would just break her heart.
 
I think she’d be in pieces. And he adores her. He absolutely adores her. He can’t get enough of her, you know, he wraps himself round her, and she goes to him, “Cuddles.” And he comes up and he’s all like that. I mean she, there’s no way she’d want to part with him.
 
 

Jan worries about the physical and emotional stress that can be experienced by parents of...

Jan worries about the physical and emotional stress that can be experienced by parents of...

Age at interview: 64
Sex: Female
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Yes. But it’s hard isn’t it really? I think I can, I think it’s probably fairly important to think a bit more about the present and, because you don’t really know what’s really going to happen in the future, but yes, I mean obviously it is difficult, and it’s very hard for my daughter and son-in-law to think about the future. They’ve, you know, having had a large grant from the District Council to improve their house, and they’re about to have another one to improve the bathroom area, it’s, you know, their intentions are clear that they want to keep their children at home and manage them. But just as the issues for me managing them as they get bigger they will be there for my daughter as well. My son-in-law’s quite a big chap, so it’s a bit easier for him. But he is in his forties, you know, so it, yes, there are, have to be health issues for all of us as we get older, and in a way, I think there’s some research isn’t there, that says that parents of disabled children often do have quite a lot of health issues, because they experience a degree of stress, and they are often having to do quite a lot of physical things. 

An integral part of this concern for the future involved trying to make things better for their children, as far as possible. A few grandparents talked about the plans they put in place to try to support their grandchildren in the longer term. These plans could be financial, in terms of special provision in their will, or more practical in providing the opportunities that would help their grandchildren to lead productive and happy lives. Siblings were a concern to some grandparents who thought about the long term implications of responsibility and guardianship that would fall on the siblings of their grandchildren with ASD.
 

Jan’s grandchildren have a good relationship at the moment and she hopes that it is maintained.

Jan’s grandchildren have a good relationship at the moment and she hopes that it is maintained.

Age at interview: 64
Sex: Female
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I think, in the longer term future, what is... quite concerning is the impact on the siblings of disabled children, and I, you know, I think about my granddaughter, because there will be a time when she will be, you know, like in the normal course of events they’ll be a time when she is their only next of kin. And they will be her brothers forever won’t they? And I’ve, you know, I’ve never really talked that much with my daughter and son-in-law, but I, you know, that has to be a long term issue that is concerning. 
 
But, you know, she does have a nice relationship with them and I hope that everybody can maintain that, so that when she becomes a difficult teenager, she may not [laughs]. But you know, hopefully she’ll still stick with that and, but it is a big issue for siblings I think as time goes on.
 
“I’m fairly optimistic about the future, much more so than I was at first”
A hope that their grandchildren would forge relationships in the future was something a few grandparents talked about. One grandmother was heartened by a recent television documentary in which people “found love in their lives”.
 

Dorothy hopes that her grandson will meet someone who “appreciates his sweet nature” and that her...

Dorothy hopes that her grandson will meet someone who “appreciates his sweet nature” and that her...

Age at interview: 82
Sex: Female
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And what do you see for your grandchildren’s future?
 
I mean Lydia’s life will have to be in some kind of controlled unit, hopefully a little, a little group home or something of that kind. And Edward I hope will, I hope... I hope he will continue to progress through his secondary years and find, I’m sure he’ll find a job of some kind that he can do. And it would be nice if he could find someone who could appreciate his... sweet nature. 
 
The big worry for Lydia would be that without people like us, sort of stimulating her, she would be quite happy to live in a world of one room and her computer. Despite the fact, that I think, you know, she does enjoy our days at the seaside and our days out and her holidays and so on. 
 
 

Sally prays that her grandson will live a fulfilled life and that he will cope with the world,...

Sally prays that her grandson will live a fulfilled life and that he will cope with the world,...

Age at interview: 57
Sex: Female
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What role do you think your faith has had in helping you to cope with this?
 
I think is had a lot of… because I’ve prayed for Ben well before he was born I prayed for him, and then, you know, when you realise his difficulties then you pray in a different way. And I do feel that, well for me, I pray for myself as well, you know, how to react and what’s best to do, and I felt great comfort in that. It’s been very, very supportive. And of course lots of people in the church have been praying, and you know, when there’s been medical appointments and that, and I said, you know, “I’m going to pray for Erica and Ben on such and such a day.” And that is very supportive. Whether it makes a difference or not, I don’t l know. I live by faith, not by certainties and you know, I’m sure that God is looking out for Ben in a very special way… yeah. I pray for him a lot.
 
And do you pray that he be supported, is that what you mean?
 
I pray that he will have a fulfilled life. That he’ll have what he needs at the different times he needs it. And that he will cope, and other people will cope with him. That’s the other big thing isn’t it that the world will cope with Ben, will Ben cope with the world.
 
 

Rebeccah thinks that everyone is different and what is important is happiness.

Rebeccah thinks that everyone is different and what is important is happiness.

Age at interview: 64
Sex: Female
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But I don’t spend my days thinking, oh God, he’s going to be, you know, this and this. I’m still living it day by day. And saying well we’ll just have to see where we are, and I’ll be the one still going on saying he’s going to be king when he’s 35 [laughs] and an artist in the Highlands of Scotland. Because that’s what, that’s what my job is basically as a grandparent, and indeed as a parent you always have the greatest hopes for your family, and the greatest faith in their ability to achieve those hopes. 
 
But the key is not to be worried when they don’t. It’s just that if they’re happy that’s really important. If they have a good sense of self worth that’s important too, and that’s another very important thing you know, always to be in the wrong, always not quite to get it right is not nice and I think, again one of the things I try and do is always improve his feeling of self worth. Tell him he’s clever, tell him, you know, he’s kind, or you know, there’s lots of verbal rewarding.
 
 

Jan thinks her grandson will get a job and feels fairly optimistic about his future.

Jan thinks her grandson will get a job and feels fairly optimistic about his future.

Age at interview: 59
Sex: Female
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And do you think about the future?
 
At the moment I don’t think much beyond the future of moving to secondary school, because that’s a mega, I think it’s huge, a huge step but all children, that move from nice protected little junior school to these massive secondary schools of one to two thousand pupils. It’s huge. And so I don’t really think beyond that at the moment. I think once we’ve gone through that transition then we’ll start to think about oh what’s he going to do when he’s eighteen. But certainly at the moment, I mean I can’t see any reason why he wouldn’t go to university or even I don’t know, perhaps he stay at home to go to university, but I can’t see any reason why he wouldn’t. He certainly intellectually able enough.
 
And I’ve often thought well, you know, there’s an awful lot of work at home now. I can sort of see him. I think he will get a job and I think possibly he will work at home, where he doesn’t have to have a lot of social involvement, but you know, he’ll have some. So I’m fairly optimistic about his future actually, certainly much more than I was when he was first diagnosed, where you just think, oh god this is it? But yeah, so concentrating very much on the move to senior school at the moment and then, a couple of years into that they might have to start thinking sort of what happens when he gets to eighteen.
 
 

Brenda feels more optimistic having seen students with autism at the college where she works.

Brenda feels more optimistic having seen students with autism at the college where she works.

Age at interview: 56
Sex: Female
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What about the future. Do you ever think about the future?

 
Because there’s a lot going on in my life at the moment, I suppose I do worry about his future. What life will be like for him. I worry about my daughter, because, I don’t know what she’s going to be like in ten years time. I very much, you know, I might have a little ponder on think ‘oh what will he be like, you know, will he go to college, will he, you know, go on to university?’ But then I see students here and I see that they can. Probably what I would say is, not so much looking at the future, but because I’ve seen students here progress, it gives me hope that as he gets older, he will learn how to cope with this better and he will be in mainstream life not be classed as special needs or anything like that. That bit hurts to think of him being special needs, but in my eyes he’s special to me.
 
Last reviewed August 2018.
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