Having a grandchild on the autism spectrum

Rewards and challenges

Having a grandchild or grandchildren with ASD involved both rewards and challenges for the grandparents we spoke with. People talked about developing a better understanding of difference and disability as they spent time with their grandchildren. Some had learnt new skills, such as Makaton (a form of sign language) or Applied Behavioural Analysis (ABA see 'therapies' for more information). Those who worked in relevant areas, such as social services, felt that they were able to bring new understandings to their work that they’d developed through their own experiences. The challenges could be significant, however, and grandparents talked about how tiring caring for their grandchildren could be, and the concerns and worries they had for both their children and grandchildren (see also, ‘Emotions’ and ‘Thinking about the future’).
“The experience has been very broadening” 
Several grandparents talked positively about their experiences and felt they had grown as a consequence. They had a greater awareness of and understanding about autism and difference which, for those who worked in related areas, helped them in their jobs. As one person said, “It’s made me more aware of the disorder. I see it everywhere”. Another said that she had become more tolerant and sympathetic to “mothers with prams”. A few highlighted the additional effort they made to understand and support their grandchildren.
One grandmother said that it was easy to miss the “little everyday joys” when she had to focus on the difficulties in order to get support. Another said that she had enjoyed watching her grandson develop and had learned a lot doing so. People talked about the “new milestones” they were privileged to follow these children to reach. One grandmother described the special moment of witnessing her grandchild do something new as “better kind of magic”.
People also talked about the wider benefits their actions might’ve had. A couple of people had been actively involved in raising awareness and funding for autism, and helping run support groups. One grandmother who’d done a lot of awareness raising said “we’ve rocked the boat”.
Some grandparents felt that the experience made their family relationships stronger and closer.
Grandparents spoke of their grandchildren with a lot of warmth and pride. A few commented on their great sense of humour and talked about children’s unselfish nature. One grandmother said of her grandson that “there is nothing selfish about him at all” and another described their grandchild' “there is no bad intent in him. There’s not an ounce of malice anywhere in him at all”. One grandmother said of her grandson that “everything about him is just best”.
“All the family are trying to learn Makaton”
A few grandparents had attended courses run by the National Autistic Society (NAS) and they found these were very valuable in helping them to better understand their grandchildren’s behaviour and to help them support their children. Some had learnt new skills such as Makaton (a form of sign language) or PEC (Picture Exchange Communication).
“It makes them very rounded human beings”
Several grandparents paid close attention to the wellbeing of their other grandchildren and tried to make sure they “compensated” for any difficulties they experienced. In addition to concern, a few also reflected on how the experience had had a positive effect on their grandchildren, making them more aware, tolerant and caring.
“It’s parenting or grandparenting plus, isn’t it? And it’s exhausting”
As well as the rewards, grandparents talked about the challenges involved in having grandchildren with ASD. Some reflected on the physical work involved in looking after their grandchildren. A few of the children were still in nappies which meant extra work. As one grandmother said, “We just go upstairs to the bathroom, put the changing mat down and just get on with it, change them and make them comfortable again”. Another grandmother said that she couldn’t have her grandson to stay overnight because he has “tremendous sleep issues” and she didn’t have the stamina to deal with that as well as her job.
Thinking about getting older and no longer being able to help out was a concern for some people. Some grandparents said they wanted to help as much as they could while they were still in a position to do so. Many of the grandchildren had very specific needs and the grandparents felt that respite carers would not be able to look after them effectively. One person said that she didn’t have the energy that she used to, and found her grandchildren tiring after a few hours. One grandmother, who cared for her grandson full time, didn’t have enough money to do the things with her grandson she wanted to, because she was not eligible for carer’s allowance. She reflected on how “professionals are very glib and don’t understand that you really work hard every minute”.
Last reviewed August 2018.
Last updated May 2015.

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