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.
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“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”.
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.
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.
“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”.
Last reviewed August 2018.
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