Effect on parents: worrying about the future

Some parents worried most about what would happen to their children when they were adults. Who would take care of them? What sort of life would they have? One mother was ‘absolutely terrified’ about the future and the worry was like a low form of depression that was with her all the time. Another said that ‘every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day’.

Diana worries about her daughter’s vulnerability and what will happen when she and her husband…

Age at interview 66

Gender Female

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I mean our problem is what happens when we are no longer around because she does need a bit of support really. She copes, she copes on day to day level. Perhaps you know not terribly tidy or clean or eating very healthily or anything but she copes in a way that is okay for her, you know. But she is quite vulnerable and people try and sort of sell her a different electricity company, you know and say you save a lot of money if you change and she is always signing up for all these sort of things, you know, and then you have to sort it out, it is that kind of problem really, that she needs somebody around to sort her out.

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Jane and Dan discuss the different ways they approach thinking about their son’s future.

Age at interview 26

Gender Male

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Is there anything else that really concerns you about the future?

Jane Concerns us. Concerns me especially about what will happen to [name] when we die. It’s quite morbid to think about but it does, it does really concern me. It does worry me, because even though he is little now, you still think about it, because with my other child, I know that I am teaching her now and she is going to be able to take care of herself, and she is going to be able to work and have children and get married and things like that. But he is not going to have those options open and you know, we already know that he is going to need some great deal of care throughout his life. So it does sort of worry me because I don’t want him to end up in an institution. I want him to be happy and feel like he can live independently when we do pass away. That worries me.
Dan’ Hm [laughs]. I feel confident and I am convinced that he will be able to take care of himself to some extent, at least to manage, because the values and quality of life available to him now, I reckon, that will help. I mean he may not be able to help himself totally compared to our daughter, but he will be able to do it to a sufficient extent and I imagine having my daughter around, she would also help him because they are very close. They are almost like twins I would say, you know, and she always asks about him, even when he is asleep in bed, when she is up and he is in bed, she always says, ‘oh I want to go and see [name] and she will get up and go to his room and have a look at him and make sure he is tucked in and all that stuff. So I am confident that even if we are not around she is going to be able to help in some way or other. And like I said the, the values we are teaching him now, will help [name] with characteristic for the future. So I am a bit more optimistic [laughs] about his future.

Is this something you have discussed between you or not?

Jane Oh we tend to argue about it when we discuss it [both laugh]. We do. And I know that I have to be more optimistic about it. It is just very hard. When you get a piece of paper and you write down all his difficulties, it is really hard to look over that and see the rainbow at the other end, and see the pot of gold at the other end, and think, yes he can get there, because you see, he has so much pulling him back. It doesn’t mean that I don’t want it to happen. It is to me, sometimes, I think more realistically [both laugh].
Dan’ Not necessarily more realistically it is just that you have read into things more then I do, so I try not to get too much dive head first and put my foot in it, feel the water [both laugh]. It is like I said if you read too much about it it takes you to that stage doesn’t it?
Jane Yes. I think that is really true.

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Many parents were concerned about the lack of appropriate support. Though some of the grown up children could function at a high level in some ways, they still might forget to wash, to eat properly or organise their daily lives (see ‘Self help skills‘). One mother worried about her daughters threat to commit suicide if left alone without support.

A few parents reflected on what it meant for themselves to have a disabled child. One mother said: ‘I shouldn’t say and I know I shouldn’t feel it, but I think to myself ‘Oh my god, this is the rest of my life?” Some parents had decided not to have any more children because of a concern about having further children on the autism spectrum. One couple considered gender selection because autism is less common in girls, but they decided against it.

Some parents felt physically affected by constantly having to fight, to deal with the reactions of others and, in many cases, having had to give up work to cope with the endless struggle to get the specialised help and attention that their child needed. But they also felt that they had gained considerable rewards from their children. They felt that they, themselves, had grown as people through their efforts to do the right thing for their children. The effect on relationships with family members and other people is discussed in Effects on relationships

Effect on relationships

Here parents talk about the effect of their experiences on their relationship with their partner, with their wider family and with friends. Effects on siblings...