Having a grandchild on the autism spectrum

Feelings about diagnosis

A child’s diagnosis of autism can be upsetting for their parents and other family members. Some grandparents we talked with also described feeling relief because they knew what they were dealing with. Other emotions included shock, fear, denial and anger but the main feeling expressed was deep sadness as they talked about their concern for both their grandchildren and their children’s future.
“There is always hope, till you get the diagnosis” 
Grandparents’ feelings about the diagnosis were complicated because they thought about the implications for both their children and their grandchildren. For some, their own upset and grief took a second place as they tried to offer their children the support they felt was appropriate. Some people likened it to bereavement with the similar stages of shock, denial, grief and acceptance. One grandmother said the diagnosis “was a bombshell”. Underpinning these feelings was the gap left by them not knowing how their grandchildren were going to develop and what sort of lives they would be able to lead. One person described this as “a sense of loss of the dreams and the future that you had” and said they still, at times, found the diagnosis hard to accept.
A few people said they felt anger or disbelief about the diagnosis because they felt that their family had experienced enough difficulty in the past. One daughter, for example, had a brain tumour before her son was diagnosed with autism. Another grandmother grew up with a brother with Down’s syndrome.
Some people were also caring for their own parents and so had additional concerns and responsibilities. They had to make decisions about how much to tell their own parents about the diagnosis. One grandmother reflected on how optimistic her mother was about her grandson and she felt very strongly that she wanted her mother to acknowledge the difficulties he was experiencing. Other people talked about feeling frightened, because the diagnosis was “a bolt out of the blue and something we knew so little about”.
“I just loved him all the more; I knew he was going to need a lot of love and care and attention” 
For some people, the diagnosis was a relief as it was a way of accessing support and coming to terms with the grandchild’s difference. As one grandmother said; “I was terribly, sorry but I was pleased that we could move forward”. Several people described how over time they had come to terms with their grandchild’s diagnosis and been able to understand autism better.
Having a second grandchild diagnosed with autism was difficult for some people we talked with. One grandmother described how devastated her daughter was to get the second diagnosis.
“You do start to analyse your family” The diagnosis also caused some people to think about whether they had “autism in their families”. The more they learnt about autism, the more they felt they could recognise traits or characteristics in themselves or other family members. For a few people, this was linked to guilt as they said they felt responsible for passing on their genes. Concern about other grandchildren, or future grandchildren, was raised by a few people who felt anxious watching the development of subsequent grandchildren.
Other grandparents said that they thought about what had caused their children’s autism. A few thought that the MMR (Measles, mumps and rubella) injection was somehow implicated, even though there is no evidence linking the injection to the incidence of autism. One grandmother thought that perhaps her grandson was deprived of oxygen during a difficult birth.
Last reviewed August 2018.

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