Having a grandchild on the autism spectrum

Brian and Lucy: Interview 12 & 13

Male
Age at interview: 70

Brief outline: Brian and Lucy's grandson, now 16, was diagnosed with autism when he was 2 years old.

Background: Brian and Lucy are both retired. He is a former police staff driver and she a former dinner lady. They have two children and three grandchildren with a fourth on the way. Ethnicity/nationality: White British.

Audio & video

Brian and Lucy have three grandchildren (and a fourth grandchild due soon). Around the time that their grandson was born their daughter (the baby’s mother) was very ill and so Lucy spent a lot of time helping out with childcare. Lucy and Brian describe how their grandson was a “perfectly normal little boy” until around 13 months when they noticed concerning things about his behaviour. They describe how he would stare with a fixed expression and this caused Lucy to suspect there may be a problem. When their grandson was diagnosed with autism it was not a huge shock. They said they didn’t make a fuss and ensured they were there to support their family. They are now relieved he was diagnosed so early on in his life. 
 
Their grandson started at a special school but had to leave after head-butting one of the carers. He is now in full-time residential care and comes home every fourth weekend to spend time with the family. Brian and Lucy firmly believe that residential care is the best place for their grandson and explain how this has benefited the whole family, including their grandson. Their grandson is now 16 years old and they describe how he is very strong and sometimes violent; this means it is difficult for their daughter to physically care for him at home. They also feel that it is important that their granddaughter is not limited by living with a brother with ASD.
 
Lucy and Brian emphasise that although their grandson is in full-time residential care he is not ignored and is still very much part of the family. They explain how their daughter gets very upset if he is ever forgotten and give the example of the upset that was caused when his name was once left off a Christmas card. Brian and Lucy worry about the effect having a brother with autism has on their granddaughter and so they try to compensate for this by treating her to outings and holidays. This also allows their daughter and son-in-law to have some time alone together and a break from childcare. 
 
Brian and Lucy describe how having a grandchild with autism has not affected their lives greatly, although they sometimes feel a bit frustrated. Their grandson does not speak and they find this quite difficult and sad, and wish they could communicate verbally with him. Lucy describes finding out your grandchild has autism as ‘devastating’ but says that she learnt to accept it and advises that there are no standard rules or guidelines because each child varies. Lucy feels a sense of loss as the expectations she perhaps once had for her grandson will never be realised. However, Brian thinks it is futile to ask “what if?” because there is nothing that can be done to change anything. They both would like to see more autism research being done as they feel that not enough information is known about the condition.
 
We also spoke to their granddaughter about what growing up with a sibling on the spectrum was like. (See Jenni’s story)

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