Having a grandchild on the autism spectrum

Going out

Many grandparents talked about the difficulties that could arise when they went out in public with their grandchildren. This was frequently because the general public often don't recognise the characteristics of autism spectrum disorders and assume that their grandchildren’s behaviour was ‘naughty’ or needed some intervention. The grandchildren could become very distressed in public as they were sensitive to some types of lighting or sound, or disliked going to unfamiliar places. While the grandparents could understand why their grandchildren sometimes found going out difficult, they didn’t want their grandchildren to become isolated and so found ways of managing outings.
 
“People look on in slight amazement and bewilderment” 
Many grandparents had experience of people gawping at them when they were out with their grandchildren. People would stare, tut or sometimes pass comment. One grandparent lived in a county where there were a lot of people with learning difficulties, so people were used to different behaviour and this made going out easier. Others too recounted some positive experiences in public and had hadn’t felt bothered by other people. One person explained how her daughter’s local supermarket was always particularly helpful when she was out shopping with her children.
Some of the things the grandchildren did in public were described as embarrassing by some grandparents. These included taking their clothes off, “getting tangled up with other people”, mimicking people or children, touching other people or having a “meltdown”. Meltdowns happen when the children become very distressed, often because of a change in routine, unfamiliar places, sounds, smells or lights. (see ‘Fears, anxieties, sensory issues and meltdowns’). A few grandparents said that other siblings could become distressed or embarrassed by their brother’s or sister’s behaviour, or other people’s responses to it, when they were out (see our section on the experiences of ‘Siblings’).
In addition to unusual behaviours, many of the grandchildren had little or no sense of danger and would run off or talk to people they didn’t know. This was worrying for grandparents who said how vigilant they had to be when they were out. Some children could unwillingly put themselves, or others, at risk by running to the street or trying to jump off walls. One grandparent said of their grandchild “there are no dangers in his world”.
Part of the difficulty for the grandparents was that they couldn’t stop their grandchildren doing these things. For example, once the children became distressed it was very difficult to console them.
One grandmother found the techniques of Applied Behaviour Analysis (ABA) helpful (see ‘Therapies’ ). For example, she and her daughter helped her granddaughter overcome her intense dislike of the noise of hand dryers in public toilets using the ABA approach of breaking tasks down into very small pieces. She also found cards produced by the NAS helpful. These cards stated that the child was autistic and this was why their behaviour may appear to be unusual. Several grandparents said that they just got used to going out and tended to become more resilient to people looking or saying things. A couple of people had positive experiences of special party venues or holiday camps for children with special needs.
 
“It can become an overwhelming task” 
One of the ways in which grandparents managed going out was to research and plan trips thoroughly. While this could be an effective strategy, a few grandparents reflected on the way in which they, or their children, could not go out spontaneously like many families. In addition to preparing their grandchildren for an outing by explaining exactly what they were going to be doing, choosing the outing in the first place could be hard, particularly if they were taking more than one grandchild. One person said that she didn’t go to “posh places” with her grandsons, but found that garden centres were “full up with people with wheelchairs and learning disabilities”.
Those grandparents with two grandchildren on the spectrum found going out particularly difficult and said that they were unable to manage taking them out on their own. They said that they often accompanied their children on outings for the same reason. Other people also said that their grandchildren needed the support of two adults when they went out. Despite their best efforts to manage going out, some people did feel that the children’s social life was limited and they felt saddened that their grandchildren didn’t get invited to parties or that big family get-togethers were impossible.
 
 
Last reviewed May 2015.
Last updated May 2015.

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