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Having a grandchild on the autism spectrum

Rewards and challenges

Having a grandchild or grandchildren with ASD involved both rewards and challenges for the grandparents we spoke with. People talked about developing a better understanding of difference and disability as they spent time with their grandchildren. Some had learnt new skills, such as Makaton (a form of sign language) or Applied Behavioural Analysis (ABA see 'therapies' for more information). Those who worked in relevant areas, such as social services, felt that they were able to bring new understandings to their work that they’d developed through their own experiences. The challenges could be significant, however, and grandparents talked about how tiring caring for their grandchildren could be, and the concerns and worries they had for both their children and grandchildren (see also, ‘Emotions’ and ‘Thinking about the future’).
 

Jan feels more passionate about being a social worker because of her experiences with her grandson.

Jan feels more passionate about being a social worker because of her experiences with her grandson.

Age at interview: 59
Sex: Female
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Well as, as you know I do a lot of training for people working with disabled children generally. And I, when I introduce myself at the beginning I sort of say who I work for and what I’ve done. I always sort of say, “But my main passion comes from the fact that I grew up as a sibling and I have a disabled grandson.” That is so true. I mean I think back and I think the different experience that [grandson] has had to my brother. I mean my brother wasn’t allowed to go to mainstream school. You know he wasn’t, even in those days you didn’t live in your local community, and [grandson] has had such a better experience and it’s going to get even better, you know, I think the next generation, I think inclusion will be even better. So that’s why I’m passionate. So I think having [grandson] has made me more passionate about what I do. I’ve been a social worker for absolutely years. I specialised in services to disabled children for over twenty years, long before he came into my life, but he’s actually given me more, even more passion I think to try and advocate for rights to try and make things even better than they were.
 
And sometimes when I get frustrated and think oh you know, he still facing discrimination or this isn’t happening. I think back to how things were in the ninety fifties and sixties and think okay. It’s getting better, [grandson]’s certainly having a better experience than previous generations.
 
“The experience has been very broadening” 
Several grandparents talked positively about their experiences and felt they had grown as a consequence. They had a greater awareness of and understanding about autism and difference which, for those who worked in related areas, helped them in their jobs. As one person said, “It’s made me more aware of the disorder. I see it everywhere”. Another said that she had become more tolerant and sympathetic to “mothers with prams”. A few highlighted the additional effort they made to understand and support their grandchildren.
 
One grandmother said that it was easy to miss the “little everyday joys” when she had to focus on the difficulties in order to get support. Another said that she had enjoyed watching her grandson develop and had learned a lot doing so. People talked about the “new milestones” they were privileged to follow these children to reach. One grandmother described the special moment of witnessing her grandchild do something new as “better kind of magic”.
 
People also talked about the wider benefits their actions might’ve had. A couple of people had been actively involved in raising awareness and funding for autism, and helping run support groups. One grandmother who’d done a lot of awareness raising said “we’ve rocked the boat”.
 

Janet feels a sense of achievement that her and her husband have developed a comfortable...

Janet feels a sense of achievement that her and her husband have developed a comfortable...

Age at interview: 65
Sex: Female
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And that’s where I think grandparents can play major role. If they’re got… because my daughter doesn’t like the idea of… I mean there is respite available, and because she’s got two, you know, should could get respite care for them, but we’ve got such a close-knit family, that she, we, they do go away for weekends and things and the children stay with Nana and Grandpa. And it works quite well, so, you know, we’re appreciate of any, any help that’s out there, but professional help, but it’s sort of we function well as a family really, and I think that’s its good for my son, son-in-law and daughter, and for us as well that we’re involved with the children, and it’s just given us a lot better understanding, because children were sort of labelled years ago, and, and put into institutions, and I’ve read up on this, and its horrific some of the stories you hear, and now there’s more awareness to it, you know, and families can get involved, and get professional help, and the, the children seem a lot happier and more content, because they’re in a loving environment, instead of institutionalised.

 

Jill works much harder “behind the scenes” trying to put herself in the shoes of grandson in...

Jill works much harder “behind the scenes” trying to put herself in the shoes of grandson in...

Age at interview: 69
Sex: Female
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But deeper friendships are very difficult and have to be nurtured. And are quite fragile and fall apart because there’s so little in common. And so, I’d say that as I get older and as he gets older our relationship is going to be more difficult. He’s going to have to be more tolerant of me, because I’m not a young pretty mummy. I’ll get slower... I mean when you think about the drawbacks that are coming on down the line, they’re fairly obviously, they’re quite banal really, but and they don’t cause me much angst, you know, I’m quite vigorous and as I say, I’m quite bossy. So [laughs] and I know that he and I get on okay really, but there’s just more to be aware of because I’m a grandmother that he’s living with and there’s more to be aware of, because he’s autism spectrum to be aware of. So there’s a lot of hard work going on, sort of behind the scenes. I have to put myself in his shoes as much as I possibly can in order to make sure that there’s not some obvious thing that I should be doing that he’s losing out on and I might look back on it later and say, “Oh why didn’t I think of that at the time.” You know, in order to help him.

 

Jan has found she has “moved into a kinder bit of the world” and “it does your heart good”.

Jan has found she has “moved into a kinder bit of the world” and “it does your heart good”.

Age at interview: 64
Sex: Female
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Somehow you move into a kinder bit of the world, and that’s no bad thing is it? You know, it’s sort of, it’s not a place you expected to be through this experience, but it is a place that I find myself in, that I’m quite surprised at actually how very, very nice some people have been, and certainly that event, was just very nice really that people were so supportive. 

 

Helen and her family have “embraced autism” and have become very involved in local organisations,...

Helen and her family have “embraced autism” and have become very involved in local organisations,...

Age at interview: 57
Sex: Female
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So that’s, he lights up our life and we see life differently because of him. We’ve become very autistic aware, which we wouldn’t have done before. Maybe because of him we have rocked the boat, in the local authority with that awful paediatrician with a group of professionals, and who knows where those messages get, because if they start to treat people better because of what we’ve done then that hopefully might have a ripple effect. We’ve become involved in all sorts of autistic things. We go to Camp Mohawk, which is a fantastic facility, out, away from here, but in Wargrave. We’ve raised money for autism. We’ve gone on walks and done all manner of things, because of autism, and we’ll go on doing that for probably for the rest of our lives. I suppose if our child had had cancer or I don’t know, you know, asthma or something we might have espoused those causes. We haven’t. We’ve embraced autism. We’re not afraid of it. We’re not ashamed of it. We will go on fighting for our grandson and all the other children who don’t have such articulate parents and grandparents as we have been blessed to be.
 
And how would you summarise your experience of your grandchil
[Laughs] Oh gosh. How would I? Well I think that song by Cat Stevens, Yusuf is probably sums it up for me. There’s been the... rainbow, there’s been the rain. There’s been the sunshine and the spring. There is the heartache. There is the glorious moments when he does something wonderful that you don’t expect, like the hug you weren’t expecting, like the bye, bye at the end of a visit you weren’t expecting. It’s, those are the things that make us smile, and keep us going really.
 
 

Irene sees life “in a completely different way” through the eyes of her grandson.

Irene sees life “in a completely different way” through the eyes of her grandson.

Age at interview: 61
Sex: Female
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Well I think because you’re aware always that quite a lot of life is so difficult for them, that when suddenly they get something or everything falls into place for them and you have a really good day, it makes it an added joy, over and above what perhaps you’d normally have. But then sometimes they show you things from their own perspective and world that is, that makes you look at the world differently yourself. You know, sometimes if they… at one time my grandson was absolutely fascinated by putting trains through tunnels and things and he’d lie flat on the floor, and in the end you end up looking flat on the floor and you see the train set in a completely new way. And it, you know, you can really enter into all the fun and the excitement he gets and what makes him happy. And by including him in that family planning for that big party and suddenly seeing this other side of him came out because he felt he was in control, because it had been well planned. He just shone, and you know, that is a memory that will stay with me to the very day that I die. 

Some grandparents felt that the experience made their family relationships stronger and closer.
 

Moira and Bryan feel that their family is a “stronger unit” because of their grandson’s needs.

Moira and Bryan feel that their family is a “stronger unit” because of their grandson’s needs.

Age at interview: 72
Sex: Male
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I think actually that’s true. I think it has, on many occasions and important times, made us closer. It certainly has changed my perspective about what was important. I mean like many young men I wanted to be a success. You know, and I wanted to rise to the top, and be in a position of influence and power, and so on, and I now see those things as being the illusion they always were. So, and I think working as a family has brought that realisation, which perhaps is a bit juvenile of me anyway, but there you know go, it did. So I think it’s changed us in a family in many ways for the better actually. Brought us closer together there’s no doubt about that. Is that fair?

Grandparents spoke of their grandchildren with a lot of warmth and pride. A few commented on their great sense of humour and talked about children’s unselfish nature. One grandmother said of her grandson that “there is nothing selfish about him at all” and another described their grandchild' “there is no bad intent in him. There’s not an ounce of malice anywhere in him at all”. One grandmother said of her grandson that “everything about him is just best”.
 
“All the family are trying to learn Makaton”
A few grandparents had attended courses run by the National Autistic Society (NAS) and they found these were very valuable in helping them to better understand their grandchildren’s behaviour and to help them support their children. Some had learnt new skills such as Makaton (a form of sign language) or PEC (Picture Exchange Communication).
 

Jan gives an example of something she learnt from the portage teacher to do with going to the park.

Jan gives an example of something she learnt from the portage teacher to do with going to the park.

Age at interview: 64
Sex: Female
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One of the things we learnt really quickly from the portage teacher, I think it was, I used to take the boys to the park just up the road, and you know those swings that you sit in, that you sit little child in, so as they can’t fall out, and they told us that you weren’t supposed to, you push them once but don’t push them again until they look at you, because this is to encourage their interaction isn’t it? Well you feel a bit of a lemon stood in a park [laughs] you know, waiting for this child to look at you. You know, it’s just really hard, you feel, you know, what are the other mothers thinking, what, why doesn’t this granny push her child again? You know. But it did actually work, but you’d never know would you, unless somebody had actually explained that to you, that they have it’s like a sort of 30 second maybe even five minute delay as to how they’re going to respond. So you could have been carrying on pushing, pushing, pushing and they’re not actually learning anything. But if you stand there and wait [pants] and wait [laughs] and it’s getting cold, and how much longer have we got to stand here for? And you know, I think that’s a nice simple example of things that you need to know really.

“It makes them very rounded human beings”
Several grandparents paid close attention to the wellbeing of their other grandchildren and tried to make sure they “compensated” for any difficulties they experienced. In addition to concern, a few also reflected on how the experience had had a positive effect on their grandchildren, making them more aware, tolerant and caring.
 
“It’s parenting or grandparenting plus, isn’t it? And it’s exhausting”
As well as the rewards, grandparents talked about the challenges involved in having grandchildren with ASD. Some reflected on the physical work involved in looking after their grandchildren. A few of the children were still in nappies which meant extra work. As one grandmother said, “We just go upstairs to the bathroom, put the changing mat down and just get on with it, change them and make them comfortable again”. Another grandmother said that she couldn’t have her grandson to stay overnight because he has “tremendous sleep issues” and she didn’t have the stamina to deal with that as well as her job.
 
Thinking about getting older and no longer being able to help out was a concern for some people. Some grandparents said they wanted to help as much as they could while they were still in a position to do so. Many of the grandchildren had very specific needs and the grandparents felt that respite carers would not be able to look after them effectively. One person said that she didn’t have the energy that she used to, and found her grandchildren tiring after a few hours. One grandmother, who cared for her grandson full time, didn’t have enough money to do the things with her grandson she wanted to, because she was not eligible for carer’s allowance. She reflected on how “professionals are very glib and don’t understand that you really work hard every minute”.
 

Jill says that caring for someone with a mild autistic spectrum disorder involves hard work.

Jill says that caring for someone with a mild autistic spectrum disorder involves hard work.

Age at interview: 69
Sex: Female
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I wasn’t very nice just now about the state pension, but it’s wonderful to have, and it does free you up, but so in a way a grandmother is an ideal carer. But [3 sec pause] but [4 sec pause] professionals [2 sec pause] can be very glib about this thing – a danger to himself or others. They, they don’t understand that you really are working hard every minute, that, or every second really that you’re out with that person and I’ll just end with an example that I often think of. Which is that he, there’s a canal quite near here with a wall which is sort of the height of my grandson’s head. And he’ll do things at a split second with no warning, and he’ll jump over a wall at the side of the road and he’s, he’s twice, not just once, but twice, he’s been just about to jump over that wall into the canal, which is a long way below, and quite fast water. And I’ve managed to yell and then grab him. 
Now I explained to him. I lifted him up, I showed him the water and he hasn’t done it again on that side of the canal.  But low and behold on the same road, he’s gone and done it on the other side because to him, seeing the water meant nothing. Okay there’s water on that side, but although he’s seen it many a time from the bus, and I’ve pointed it out to him, he’s not understood that it’s the same thing.  
 
 

Jan and her husband were exhausted after taking the grandchildren to the London Aquarium.

Jan and her husband were exhausted after taking the grandchildren to the London Aquarium.

Age at interview: 59
Sex: Female
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It’s, its fine. We’re very lucky with [grandson] that he is very adaptable, as long as he knows what’s going to happen, he knows what the plans are, he’s never, you know, particularly difficult. We’re also very lucky that he sleeps really well. In fact when they come to stay it’s the little one that always wakes me up early [laughs]. Not [grandson]. {Grandson]’ll quite happily sleep, sleep on, but yeah, it’s fine when he comes to stay really.
 
Tiring, I mean I find as I’m getting older now, just the fact that its’ two children. I mean I was saying to you earlier, on Wednesday we went down to London for the day and went to the London Aquarium. Now they both behaved really well all day. Both my new husband and I were just exhausted, at the end of the day. Just because we’re getting older and it’s hard to keep up with children that have got a lot of energy isn’t it?
 
Last reviewed August 2018.
Last updated May 2015.

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