Having a grandchild on the autism spectrum

Information

People vary in their approach to information about health conditions generally, and this was reflected with the grandparents we talked with. Some were very keen to find out as much as they could about autism, while others preferred to live day to day and didn’t seek out available information.
 
“Like everyone else, I’d watched the film Rainman 
What people knew about autism before their grandchildren were diagnosed varied. Some people knew very little or nothing about the condition, while others had come across people with autism in their work. Those with previous experience said that their experiences with their grandchildren made them realise how “stereotypical” their original understandings of autism had been. One person said that her experiences of autism at work had been more to do with the provision of services than “the day to day hands on” aspects.
One grandparent was glad that understandings of autism had moved away from focusing blame on the parents, and a few people discussed the increase in television documentaries about autism. They felt that the condition had become more widely known about. One grandparent, however, felt that other family members based their understanding of autism on these programmes which didn’t capture the individual characteristics of her grandson.
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“There are a lot of good books with a lot of information” 
Many grandparents were very keen to find about autism and they talked about reading books, leaflets, looking on the internet and attending courses or talks. One grandmother said that looking for information was a practical task that grandparents could do for their children, one that was particularly useful after diagnosis. Another grandmother, who was a “great reader” said that part of her reading was linked to “an air of desperation” to find some intervention that helped.
“This woman from her own experience has been able to open a window into my grandson’s world” 
For several people, the most helpful source of information were reading personal experiences of autism, or going to talks given by people with autism. These experiences helped them to gain a better understanding of what it is like to be autistic and to make sense of some of their grandchildren’s behaviour. One woman explained how these first-hand accounts could almost provide an insight into her grandson’s mind that she couldn’t otherwise access. Real life experiences also helped people dispel some stereotypical understandings of autism, such as people with autism not having feelings. One grandparent said he preferred to hear from those “who’ve been there, done that”.
A few people said that their reading about autism varied, depending on how they felt at the time. Some books or resources could be upsetting because the autism spectrum includes a range of severity. As one grandmother said, “it is quite hard, at the point of diagnosis, to be reading some of these difficult things”. Another couple found that information on the internet didn’t give them any answers, just lots of opinions, which wasn’t helpful. Some grandparents described becoming so involved in finding out more about autism that it was always on their minds; “the first thing in the morning, the last thing at night”. This could get emotionally tiring.
“The less you know about something the more you come to it with your heart open” 
Other grandparents weren't interested in finding out more information about autism. Their approach was to take each day as it comes and learn from their grandchild or grandchildren with ASD, not from a book.
While most grandparents said they were happy with the information they could access, a few said that they would like more resources aimed at grandparents and more specific information focusing on particular areas, such as challenging behaviour or eating habits.

 
Last reviewed May 2015.
Last updated May 2015.
 

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