Having a grandchild on the autism spectrum

The Road to Diagnosis

Autism spectrum disorders may not become apparent for several years so some children have a period of their lives in which parents and other family members do not suspect that anything is the matter. Other children have more obvious signs from an early age, and these signs encourage parents or carers to seek answers. The grandparents we talked with recalled different experiences of realising or finding out that their grandchild or grandchildren were on the autism spectrum.
 
“I didn’t realise because they did everything normal babies do”
The majority of grandparents said they hadn't noticed anything unusual about their grandchildren’s development. The children had met their developmental milestones as expected and one grandmother described how her grandchildren were “lovely, beautiful, bonny babies who seemed to be doing everything in the right order”. One grandson lived with his parents and grandparents until he was two, and his grandmother recalled how well he interacted with adults. Another grandmother worked in the field of disabled children but didn’t recognise anything different about her grandson. A few of the grandchildren developed as expected for the first 18 months or so, and then regressed.

The most common sign grandparents talked about was problems with language and speech. Some of the children had been slow to develop even simple language and had problems communicating from an early age, whereas others suddenly “lost the language” they had. One grandparent described how her grandchildren had “stopped making any noises” and just went quiet.
“He’d always shut a door if we were in the room”
Other grandparents said that they noticed signs that concerned them and their children. A couple described how they had always had a feeling that something was wrong but for most, the change in the children was sudden. These signs included unusual behaviours, such as lining up cars, always touching particular textures or disliking certain foods, being sensitive to sounds or lights, running into people, not reacting to their name and watching the same television programme over and over again. Several of the children didn’t like mixing with other children and were described as “loners” or “completely in his own little world” or “not bothered” about what was happening around them.
Several of the children cried for lengthy periods and their grandparents were unable to pacify them. Some also had “tantrums” and would become very distressed in particular places. Grandparents described how the grandchildren had “rages” or “exploded”. Other signs included difficulties nursing and sleeping, bowel problems, and difficulties toilet training.
Some grandparents discussed their concerns with their children, while others felt they didn’t want to say anything at first. When they did raise their concerns, they were relieved to find out that their children were also worried about the same behaviours. A few people worked in social services and had some experience with disabled children. For one family, this meant that they “all had a fair idea of what was the matter”.
 
“People think when you’ve gone through it with one child, it would be easier”
Some grandparents had two grandchildren on the spectrum and, often, the second child’s diagnosis was a more straightforward process in practical terms because they had experience. Emotionally, however, the second diagnosis could be particularly upsetting. One grandson was diagnosed with Asperger syndrome at the age of 10, after his younger brother was diagnosed with autism aged 2. His grandmother said that health professionals were able to look back retrospectively at his childhood, in the light of his brother’s diagnosis. Where two siblings were on the spectrum, they were described as very different by their grandparents. A grandmother of twin grandsons said that the “major signs sort of came together” even though the two boys had very different temperaments.
“It took another 18 months before we got the diagnosis”
Most grandparents said that their daughters or daughters-in-laws approached the GP or health visitor and raised their concerns with them. One daughter was very keen to get her ten year old son diagnosed before he started secondary school and so “led the process”. Getting a diagnosis was often “not very simple or straightforward”. In some cases, parents were told not to worry and had to be persistent in getting a diagnosis for their children. Other GP’s referred the children to specialist centres for assessment. There is no standard diagnostic test for autism; diagnosis usually involves a combination of interviews with parents (and sometimes grandparents), observing the children playing, and filling in questionnaires. Some children had blood and urine tests to rule out other conditions.
A few grandparents attended appointments with their children and grandparents, while others were told about the process afterwards. One grandmother was not happy about the diagnosis of childhood autism and asked for a second opinion. The second appointment confirmed that her grandson was on the autism spectrum and that “his needs were probably a bit more severe than we’d realised”.
After the diagnosis, grandparents were able to look back on the behaviours that had concerned them and make more sense of them. At the time, some said that they or their children originally thought their grandchildren were naughty but later on realised, as one grandparent put it that “a lot of it was frustration because they couldn’t express how they were feeling”.

Last reviewed May 2015.

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