Having a grandchild on the autism spectrum

Emotions

The accounts that people gave about being a grandparent of someone with autism were often full of emotion. They described feeling deep sadness about some aspects of the lives of their children or grandchildren, but they also spoke about the sense of joy they felt when their grandchildren achieved particular milestones. Most felt a strong sense of pride about their children and their families. In addition, they worried that their grandchildren could experience difficulties in the future and that their children would have to take on additional responsibilities over the course of their lives.
 
“When he achieves something new, it really moves me” 
Reflecting on their experiences, a few grandparents remarked on how they’d changed the way they felt about their grandchildren and their achievements. They took real pleasure in seeing their grandchildren achieve what they might previously have thought of as small milestones, such as waving or saying a word. They’d learnt to see the joy in small things. As one couple said; “You have to find new ways of celebrating and having a relationship”. People had grown to feel this way and saw it as part of a learning process for them as they adjusted their expectations. As one grandmother said, “In the beginning it was very different but now, he is just special”.
“It’s hard to deal with sometimes” 
One grandmother described her experiences “as a rollercoaster; terrible downs and then quite a lot of highs really”' most grandparents talked about feeling sad about some aspects of their children’s or grandchildren’s lives. Several felt sad that their children’s families were unable to lead spontaneous and ‘normal’ lives, doing the things that other families can do such as day trips; going on holiday as a family; having a birthday party; going out for a meal or going to family get-togethers (see ‘Going out’). One couple felt sad that their grandson was missing from a framed family portrait as this reminded them of the life he led away from them in a residential school. These constraints could make the grandparents feel that their children and grandchildren were “separated” from the wider family and this was hard, particularly when they reflected back on their own childhood experiences.
A couple of grandparents said that they had felt anger in the past towards their grandsons when they became aggressive and hurt their parents. Over time, they developed a better understanding of why their grandson behaved like that.

Some grandparents talked about the sadness they felt for their children in terms of the “lifelong responsibility” they faced caring for their children. Some felt concerned that the experience had had a significant impact on their children (see ‘Thinking about the future’). A couple of the grandchildren lived in residential schools and the decision to take this move, and the context behind it, was very upsetting for the family members.
  “You feel rejected, but then you know you’re not being rejected”
Some grandparents talked about their grandchildren’s lack of physical contact (see ‘Relationship with grandchildren’) and how this could be upsetting. They got used to it but said that “it was hard” that their grandchildren didn't want to be hugged or kissed. They also found it sad that their grandchildren were unable to express themselves, or that if they hurt themselves they were, at times, unable to console them.
A few grandparents described being philosophical about the situation; they felt there was nothing they could do about it, so they “just had to get on with it”. One couple said that they accepted they would not be part of their grandson’s life in the way they had anticipated, which was hard as he was their only grandson. Some also felt that they couldn’t appear to be too upset or negative about things because that would have an impact upon their children.

Many grandparents thought about the future and worried that their grandchildren may lead difficult lives (see ‘Thinking ahead’). Some were concerned about a possible genetic link to autism (see ‘Feelings about diagnosis’). One grandmother was upset because she’d realised, in hindsight, that her son was also on the spectrum but he had remained undiagnosed through a difficult childhood. She felt that she had failed him, even though he “got there in the end”.
 
A few said that they felt sad when they thought that their grandchildren weren't accepted by other children, even if they didn’t know if their grandchildren themselves felt sad about these things.
“Our extended family has tried to understand, but...”
Some grandparents looked at more distant members of their families and felt upset that they didn't seem to understand what everyday life was like for their grandchildren with autism. They felt that some relatives could, unintentionally, be hurtful in what they said and remained largely untouched by the experiences. In addition, some talked about how their other children felt left out in terms of time and attention they were able to give them because they devoted more time to their grandchildren with ASD.
One grandchild had an aunt who lived abroad and who found it difficult to get to know her nephew because he couldn’t communicate using Skype or telephone. Hearing about their friends’ grandchildren could be a source of sadness for some of the grandparents who said that it was hard to compare the different achievements of the children. This, again, was linked to worries and concerns about the future.

Last reviewed May 2015.

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