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Having a grandchild on the autism spectrum

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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.
 

Jan had worked with families with autistic children so knew a little bit about “typical autistic...

Jan had worked with families with autistic children so knew a little bit about “typical autistic...

Age at interview: 59
Sex: Female
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What did you know about autism whenever your grandson was diagnosed?
 
I knew a bit. I know more now but I knew quite a bit. Because I had actually worked with families who had an autistic child before so… but I think a lot of the information I knew then was a bit stereotyped.  But I think that’s probably generally what society knew about autism at that point, which was sort of some of the obsessive behaviours and not liking change and all that, so I did know a little bit about what was considered to be typical traits of people with autism. I knew it was lifelong and I think that’s the bit that is really, that’s very difficult to come to terms with. But I think also what you don’t know at that stage, or you don’t, certainly I didn’t appreciate at that stage, was how well someone with autism can develop, given the right support and help and so on. So that’s been really nice and really positive to see how he’s developed. Because I think I certainly had that fear that he wouldn’t, and this is where the grandparent bit comes on, it wasn’t just concern about [grandson], it was concern about my daughter. Lifelong, lifelong responsibility which I saw with my mum of course you see, and you know, before 84, 85 still having to care for my brother every weekend and of course he was becoming more dependent as well. And so in 84 you know, still having to do lots of the physical care, and I didn’t, that’s what I found very hard, is thinking about, is this what my daughter’s life’s going to be. 
 
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.
 

Irene finds television documentaries about autism frustrating.

Irene finds television documentaries about autism frustrating.

Age at interview: 61
Sex: Female
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My daughter-in-law, but they’ve been together for a long time, they’ve just celebrated their marriage now. She said, “Oh well, I really want to know the boys, but I find it very difficult, because if I talking to them on the, on the Skype, they clam up, or it’s, ‘Hi Auntie and then they’re away. You know, they don’t stay, they can’t have a chat with me, so I don’t get a sense of them”. And I say, “That’s part of language communication difficulties, you know, that’s part of the social interaction difficulties.” So she said, “But it’s very, very hard for us, because we get only kind of the press view of what autism is about. So we watch the television programmes and the documentaries. We try and get an understanding, but it doesn’t actually give us a sense of how they are. How they are along the spectrum, or what makes them worried and concerned.” And that’s something that I have shared with family members. I said, you know, “I’m very impressed by the fact that you’ve tried to look at documentaries on the television, and you maybe phone me up and so ooh I so a programme with Temple Grandin, isn’t she fantastic.” Or, ‘I watched, “Young, Autistic and Starstruck.” Or, “Oh wasn’t that play about Thomas wonderful? Would it help if you got a dog in your situation?” “No, my grandson’s terrified of dogs. Don’t even mention dogs. Not all children with autism want a dog. Please don’t get that idea!” 
 
But I found an awful lot of people and family members included have said, because they’ve seen programmes about savants. “Oh well, oh yes, I know it’s hard that they’ve got ASD, but they’ve usually got some particular gift as well, haven’t they? I’m sure that the gifts will emerge, you know.” And yes, quite a lot of children with ASD have got particular gifts, they really have and it’s brilliant that they’re, their ability to sequence or number means that, or are musically gifted, or they’re incredibly good at mathematical skills or, or they can paint, completely from memory because they’ve got photographic memories and, and this is true and yes of course one celebrates that. But there’s an awful lot of children who are just on absolutely the same normal spectrum of intellect as every other child and often below because of the very nature of their ASD and their living in their own world means that they’re not accessing the curriculum in exactly the same way as other children, their own peer group, let alone having any particular gift. Do you know what I mean? And it’s so hard to try and get that across. It’s very difficult. 
 
“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.
 

Dorothy found out a lot of information through her daughter and also through working with...

Dorothy found out a lot of information through her daughter and also through working with...

Age at interview: 82
Sex: Female
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And thinking back to the time that Lydia was diagnosed because she was the first one who had her diagnosis. Did you know much about autism at that time?
 
No, nothing. No I don’t think I… I suppose I’d heard of it I don’t know.
 
So how did you go about finding out about it?
 
Really I’d got it second hand from my daughter largely, although, though she did put books in my direction and I did read. I have read some of the books. But it was partly working with the supervisors and people on the ABA programme that taught you a lot. It taught me a lot as a teacher actually. Because what I feel about the ABA philosophy is that it is good parenting and good teaching writ large because it’s completely consistent. You’ve got to be absolutely totally, minutely consistent. And that’s good when you’re dealing with any child really.
 
 

Sally has spoken to a colleague, read books, and watched television programmes about autism.

Sally has spoken to a colleague, read books, and watched television programmes about autism.

Age at interview: 57
Sex: Female
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I have a colleague through my work at the church who’s been a teacher. She’s a head teacher of a small school. And I talked to her a lot about it. And she explained different types of you know, the different parts of the spectrum of autism, and I talked to her a lot and she was, she was very helpful and various other people who, there’s somebody else I realised at church her nephew was effected, and talked about his experiences. And I just pick up whatever I could. I watched television programmes, listened to things on the radio. Read books, and you know, once you start talking about it, people start exchanging information and giving you books and [um] I’ve read several books on it now. Mainly the one I mentioned earlier, ‘The Dog in the Night time’ or whatever it is called. And there’s another book somebody gave me, that actually her, somebody distant in her family had written about the experience of having two boys with autism. And they’re, they’re quite big now. I think they’re grown up now. And it was quite a harrowing book actually and then watching different things. There was a film, a documentary, not a documentary, a sort of drama about a boy who had a dog, and I can’t remember what it was called now, it’s quite a famous one I think.

“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”.
 

Bryan and Moira would have liked to have heard more personal experiences rather than read ...

Bryan and Moira would have liked to have heard more personal experiences rather than read ...

Age at interview: 72
Sex: Male
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Bryan' Hm. I think actually, for me, anyway, and other people have a different view, but for me what I would have liked to have had is the sort of experience that you’re gathering now from other people who have been there and done that could, if you like, reassure me that my world hadn’t actually fallen completely apart and that there were compensations and good parts and as well as the disappointments that undoubtedly come. So I would have very much very much valued sharing the experiences of people who had gone here before. And I think I would have preferred that to textbooks on the subject, which tend by and large to be written from the point of view the “specialist”.
 
Moira' You can always get the factual, textbook information. But how, as you said, how to cope and live with it, with the shock of it. When, I think, this is, it’s the shock of diagnosis isn’t it, and facing, not knowing what you’re facing and people who have been there and done that can probably help more than a fact, a list of facts in a paper or a book.
 
 

Interview 7 found an autobiography gave her 'good insight into what happens inside a person'.

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Interview 7 found an autobiography gave her 'good insight into what happens inside a person'.

Age at interview: 63
Sex: Female
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There was a book which came out. I think it was called “Blue days”, but it was about somebody who is on a totally different spectrum. He is some kind of a genius really, you know, but it was all the same very interesting, because I read it and it really made me understand what it’s like to be autistic. I hadn’t realised certain things. So that was a very moving book and it was very useful. And I passed it on to my daughter, and I did say to her, “I know [name] isn’t like that. I know this is a very different person. Don’t think that I’ve got dreams or aspirations for [name] that he is going to be like that. It’s not that, it’s just that it gives you such a good insight into what happens inside a person.”
 
And I found that book very, very helpful because he talked about his childhood. He became very famous in the end because he was able to do incredible things with numbers. He could do the most extreme sums in one second. He’s very famous and he wrote a book about it. But he talked about his childhood and what it was like to be autistic. And it’s good because you go through phases, that’s something I didn’t mention, you have moments where you feel as if, the autistic person has no feelings. You know, it’s very, it’s not a nice thing to say but it’s true. And you wonder if they have any feelings at all, sometimes. 
 
I used to work with deaf and blind people a long time ago, and it was a very intense job because you had to keep looking, especially with the person who was deaf and blind at the same time, and mute, if you had the three combined, you had to keep looking at their faces and the whole body to try and get through, desperately try and get through and get some communication and it’s a bit like that with [name], but not as intensively. But reading that book helped me, when I read about all his feelings, all the things he felt, you know. That book made me very careful as well. Because I thought, yes, be very careful, don’t take things for granted and assume things.
 
 

Irene’s understanding of her grandson has been helped through reading personal experiences.

Irene’s understanding of her grandson has been helped through reading personal experiences.

Age at interview: 61
Sex: Female
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And I have to say that I find the books that have been really helpful are the ones that have been written by those high functioning autistic people themselves and Aspergic people, or people who’ve in their families have done the research, because they saw in their own children that they needed to look at a medical form and not a psychological form, because they know that this is, particularly the study, I’ve forgotten the gentleman’s name, but a doctor who did pioneering work, because he had two twins, one of whom was autistic and one who wasn’t. And they’d been raised exactly the same way, so he knew it just couldn’t be the environment of the family or psychology alone, it had to be something more, and went onto a medical diagnosis, and medical research. That’s very helpful isn’t it? 
 
You know, and so when Temple Grandin’s books came out and when she was interviewed on television and she could explain as an adult what her world had been like as a child, and all the things that she found difficult. You know, I was thinking when she was talking about... She talks about how as a child she would runs and endlessly through her fingers and be completely absorbed in her own world and needing that tactile thing and it kept her safe and contained and it was something that she just had sensory pleasure from which she didn’t get from some other hugging or kissing or other things, and it was something she liked. And when she talked about it, I suddenly sort of remembered my little grandson just constantly running his hand across the textured surfaces and it’s something he needed to do and he really need to do it. It was, you know, from a really early age or being disturbed by even minutiae on the plain floor surface and picking up those things. So when she, when she was talking about how she looked at the cattle on her uncle’s ranch and saw the patterns that they saw were different and what had spooked them, that leaves were there. I sort of thought, “Yay! I can understand that”. This woman from her own experience has been able to open a window into my grandson’s world and I have found those the most useful books and some of the other things that have been done from clinical studies, I’ve not wanted, you know… I probably will get round to doing it one day because I like intellectual understanding but I have chosen carefully what I’ve read and at times, especially in the early days when I was coping with the emotion sometimes I thought, I can’t deal with that, it’s enough to deal with what I’m dealing. 
 
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.
 

Irene used to fall asleep reading about Temple Grandin or Tony Attwood but finds she can’t always...

Irene used to fall asleep reading about Temple Grandin or Tony Attwood but finds she can’t always...

Age at interview: 61
Sex: Female
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I used to fall asleep with Donna Willliams and Temple Grandin and, and Tony Attwood books not being read because I was so tired and slipping off onto the floor. So it’s the last thing you’re thinking about at night, and it’s the first thing you pick up in the morning. And I have to confess that there’ve been times when I’ve thrown the books down and I’ve felt, it’s too much. I’m coping with it. I can’t actually deal with reading about it. 
 
And sometimes reading the range of difficulties we might be in for in the future. While it’s an intellectual thing I should certainly know about, let’s just cope with where we are now. I don’t want to think about the children, who with autism have additional behaviour difficulties or can become clinically depressed or are perhaps getting the wrong kind of support.
 
“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.
 

Jill likes to come to “come to it fresh and form my own opinions of how to cope with it all”...

Jill likes to come to “come to it fresh and form my own opinions of how to cope with it all”...

Age at interview: 69
Sex: Female
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And [um] have you tried to find out information about autism? 

No. I haven’t. Because... again this is an old lady kind of a thing to say, and I may well be absolutely up the creek and wrong, but I find the more I research something, and I find now, I used to be a great researcher. I used to love finding out about subjects I was interested in or that were important to me, but I think I find now that the less you know about something the more you come to it with your heart open and you can come to it spontaneously because you’re coming to it fresh, and you form your own opinions of how to cope with it. And it’s lovely not to have to go by all the book stuff, you can just, if you’ve come to a conclusion, it’s lovely if you talk with other people and you hear their conclusions and theirs are fresh and alive and  no I’ve not tried to research it, not really, no.

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.
 

Irene would like a booklet aimed at grandparents; something practical and accessible.

Irene would like a booklet aimed at grandparents; something practical and accessible.

Age at interview: 61
Sex: Female
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The government produces, in association with people, an important little booklet that is available about information for parents, but there isn’t a similar book for grandparents. The National Autistic Helpline is always there for anybody, any family member who needs to get more information or support and they actually have got a brilliant website for grandparents which is easily accessible and goes through some of the things that grandparents will face about understanding autism or offering support to your family, offering support to the siblings, it’s all in there. But it isn’t in a booklet form. It’s only on the internet at the moment. Or it was last time I approached them, and it would be brilliant if that was actually funded and put out there as a booklet because not all grandparents, particularly people of older generation than me, because grandparents come at all ages. Some of you can start be a grandparent at 80 and older. It’s really useful to have something in your hand to keep as well. It’s fine to read something on the internet, but to have it in your hand to keep is really useful. And it’s very practical and it’s very easily accessible in its content. So it would be great to see that wherever there’s a clinic or a diagnostic area of, of a hospital or speech and language therapy, these kind of easily accessible information is there. And I think that it’s after diagnosis as much as before that parents need support because they enter into a whole new world of parenting.

Last reviewed August 2018.
Last updated May 2015.

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