Having a grandchild on the autism spectrum

Being a grandparent

Being a grandparent of a child or children with autism spectrum disorders (ASD) has both similarities and differences to that of being a grandparent to any child. Grandparents of children with ASD often play a more extended or intense role in the lives of their grandchildren compared to other grandparents. Some grandparents we talked with were very involved with both their grandchildren and their children’s lives. Others were less involved, but made it clear to their children that they were there if they were needed. The key support was the practical, emotional and sometimes financial support they provided to make the lives of their children and grandchildren easier.

“I’m a much needed granny”
Several grandparents were aware of the importance of the support they offered their children and grandchildren. A few had moved nearer to their children and had been on courses run by the National Autistic Society to learn more about autism. They were aware that the support they offered was over and above that which they may have offered their children if their grandchildren were not disabled.
One grandparent said that it was wonderful to look after her grandchildren and to be trusted enough with them. She felt an extra level of responsibility because they were so special to her daughter.
“I can usually tell when my daughter and son-in-law are ready for a break”
One of the ways in which many grandparents supported their children was by looking after their grandchildren; either sharing in their day care or babysitting in the evenings and weekends. Providing child care was the best way to help their children. A few grandparents talked about the reassurance their children felt when they looked after their grandchildren. While respite care may be available, the grandparents were felt to know the children better.
Until he was diagnosed and his mother decided to give up work to care for him, one  grandparent was the full time carer of her grandson. While she was very upset at losing this role initially, over time she found her support was needed at different times and she became the primary carer in the holidays and on inset days. Other grandparents described a developing caring role that was more ‘ad hoc’, as on occasion they would take children to appointments or look after a sibling, rather than becoming the primary carer to enable their child to work. This childcare could be hard work for grandparents. Some of the grandchildren had little awareness of danger, or could run off if gates or front doors were left open (see ‘Going out’ and ‘Rewards and challenges’). Some grandchildren were in nappies beyond the typical age for toilet training or could become very distressed if their routine was disrupted. A few people had more than one grandchild with ASD and looking after both could be tiring.
“Everybody knows I’m kind of there in the background” 
In addition to providing childcare, grandparents provided other forms of support. A few grandparents were in a position to offer financial support, by buying their grandchildren toys, DVDs and equipment, paying for private nursery fees or making additional financial provision for them in their Wills. Being able to provide financial support was difficult for those who had retired and were on a small income. They provided emotional support, allowing parents to “moan”, “vent their anger and frustration” and acting as a “continual sounding board”. Some provided advocacy support, sharing with parents any new bits of information or research they came across. A couple of people were more closely involved in advocacy work (through their backgrounds) and helped to draft letters to official bodies. One grandmother described herself as the “researcher” and felt she was fighting for her grandson’s rights.  
“It’s my role to give my grandchildren good childhood memories” 
Some saw their role as enhancing their grandchildren’s lives; providing love for their grandchildren and doing things with them that they would remember. One grandmother said that one of her roles was to expose her grandson to “as many cultural and artistic things as possible, so that he has a rich childhood”. Another emphasised the importance of “relishing the time you have”, because as grandchildren grow older, they will start “to see you as a boring old fart”.
“You always sort of have to have the two hats on” 
Several grandparents reflected on the way in which their role was more diverse as compared to the typical grandparent role; how they had to have the “normal grandma” hat and but also to try and see the world through the eyes of their grandchildren to find out what is difficult for them.
A couple of grandparents worked in relevant areas, such as children’s services, and talked about taking on a ‘key worker’ role as well as a grandparent role. This was partly because of the lack of support offered to their children by health or social care.
“Supporting the sibling is as important as supporting the child that is diagnosed” 
Some grandparents talked about the support they gave to their other grandchildren. For example, one grandparent said that it was her job to make sure the sibling didn’t lose out too much; “Our job will be to make sure we have days with them separately and then there are treats and wonderful things for him, and he won’t feel that he’s been overlooked”.
“I try to be conscious of my role, of the boundaries” 
It was apparent that several grandparents had reflected on their role as grandparents and talked about being aware of the boundaries and expectations involved in their role. Many were careful not to intrude in their children’s lives too much. One grandparent said she is always there as a sounding board for her daughter but never gets involved in the decision making. Another couple said “you have to be guided by the child’s parents, because ultimately they are the people responsible for him”. They also talked about making sure that they looked after their own needs as well. In addition to their own interests and hobbies, they needed to put time into their marriage, or looking after aging parents, for example.
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One couple said that they’d realised they had to take a backseat with their grandson; as he didn’t enjoy social interaction, he wasn’t going to be a part of their lives in the way they anticipated and they had to accept that (see ‘Everyday life and emotions’).

Last reviewed August 2018.

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