Having a grandchild on the autism spectrum

Relationship with grandchildren

All the grandparents we talked with had close relationships with their grandchildren. Many were very hands on, living close to their grandchildren and seeing them regularly. One grandson lived with his grandmother. Others lived further away and saw their grandchildren less frequently. These grandparents also described close and loving relationships with their grandchildren though they were less involved in everyday aspects of their upbringing.

“They are a delight, an absolute delight”
The grandchildren ranged in age from 6 up to 21, and all the grandparents we talked with, described their grandchildren in glowing terms.

Rebeccah has a jolly good relationship with her grandchildren and she is hideously proud of...

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Age at interview: 64

Sex: Female

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And can you tell me about your relationships with your grandchildren in general?

Well I’d like to think that they were jolly good. I mean we’ve always been accessible and interested and available whenever required to, to help out. And obviously, hideously proud of them [laughs]. Absolutely adore them, they’re wonderful children. Absolutely. The elder one is seven, the younger one is four, that’s right, four, yes, four, yes four and a half, coming up to five. They’re a delight. An absolute delight.

Sally has a different relationship with her grandson because he was her first grandchild.

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Age at interview: 57

Sex: Female

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Well as I said before, I feel I have a different relationship with Ben because he is the oldest. He’s my first grandchild. I try and respect his, his what he wants to do. I try not to, I try not to sort of inflict myself on him, because sometimes he doesn’t want to be cuddled and fussed about, because he doesn’t like it, and he’s getting too old for it. He’s the grand age of seven and a bit. You know, he doesn’t want to be hugged and kissed by his nanny any more. But yeah, I mean I just think he’s such a beautiful child and his outlook on life is so, so different because of the autism, and sometimes I think it’s so very special the way he looks at things. He’s got a huge sense of logic and you know, he, he can see ways of doing things that perhaps other people wouldn’t, and I am besotted with him [laughs]. I’m a doting nanny [laughs]. Very doting.

A few grandchildren lived with their parents and grandparents when they were babies and this created a strong bond between them. One grandson lived with his grandmother, and saw his mother regularly. Several grandparents cared for their grandchildren on a regular basis. One grandmother had seen her first grandson being born and missed the second child’s birth by 30 seconds.

Jan says her grandson is absolutely wonderful though he can be irritating at times! She saw him...

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Age at interview: 59

Sex: Female

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What about your relationship with him. How would you describe that?

I think it’s close. I mean I’m I think he’s absolutely wonderful. I mean he can be irritating. He’s very similar to lots of children on the spectrum, who, he’s got very fixed interests. So for instance, he loves being on the London Underground and talking about what line goes where, and the sort of thing that would bore, you know, a lot of people, but he absolutely loves it, and he finds that very interesting. And I just feel very close to him. I think probably because he, I did see him grow up as a baby and I saw him every day for the first two years. I think that child was always going to be very special. I think because of my experiences, early experiences, as a child with my brother and growing up like that I had this almost protective kind of feeling towards him and I just want the best for him. I just think he’s great and I do think he’s very, very good with the way he’s coped with a lot of his difficulties.

I think he can play on it sometimes, you know, we have to be careful, because he is quite cute [laughs]. He’s quite clever. So we always have to find that balance of sort of not making too many allowances, but no he’s, he’s pretty good, but he does still find social, social, what’s the word I’m looking for interaction quite, quite difficult as a lot of autistic children do. He’s not always quite sure what how he’s supposed to behave.

Helen adores her grandson and loves having cuddles with him.

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Age at interview: 57

Sex: Female

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So in terms of my relationship with him. I adore him. I love having cuddles with him. I like going swimming with him. And we do crazy things in the pool together. I mean he’s all kitted out with lots of floats and things, because it’s, I think it’s a bit touch and go whether he’ll ever learn to swim on his own. But he loves swimming, and loves being in the water. He loves the freedom, and he can just go off on his own. He loves jumping in. But he’ll get into a routine where he jumps in, sploshes to the end of the pool, climbs up the ladder, comes out and he’ll do that repetitively, which is a very autistic thing to do. He has quite good receptive language. So he understands quite a lot of things of command. You say to him, “Go and get your shoes.” He’ll get his shoes. All sorts of things you can ask him to do and he’ll do them, and he understands, so I mean, he’s for me, one of the great mysteries.

Jills grandson is easy to get along with and they have a fairly normal grandma-child...

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Age at interview: 69

Sex: Female

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I think because he’s not really very ill, he’s easy to get along with. I think it’s a fairly normal grandma-child relationship. I’m quite bossy, he’s quite bossy. We share the same sense of humour.

We can lose our temper with each other, and we can both yell, and then it doesn’t seem to matter two minutes later, literally so that’s good. He’s quick to say he’s sorry if he’s really being naughty, as opposed to autistic.

Several people talked about how loving their grandchildren were. This was something they hadn't necessarily expected because of stereotypical views of autism.

Brendas grandson tries to find ways of loving her more.

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Age at interview: 56

Sex: Female

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What are the best things about him?

Oh. I think... it’s his smile. He smiles as soon as he sees you. It’s his love, and his way, you know, he’s, when he talks to you, the funny little things he says. He doesn’t understand jokes, but he likes to make his own jokes up, and I think it’s just what I get back from him. You know, if I tell you something, it does make me have a lump in my throat, but [name] has to find ways of loving me more. So he came over one day and he said, “I love you, up into outer space and round the planet and back twice.” And I went, “That is a lot of love. And I love you as well loads.” So the next time he saw me, “I love you up into outer space and back twice zigzagging,” because he’s found a little bit more.” So I always say, “And I love you that as well. It’s lovely.” And the next morning he said, “I do love you nanny.” And I said, “I know.” And he said, “Well I’ve been considering this.” He said, “And the more I see you, the more I love you.” And this was from a 5 year old. And what else can you say when you’ve got a child who gives you all that – sorry – but you love him, [laughs] you know, that’s [name] is, such a loving child, you know, and there’s just this little bit with him. But on the whole he’s… it’s the love I think, you know, and this happy little soul that he is. That’s all I can see about [name]. You’d have to see him to understand him [laughs].

Grandparents had different levels of involvement in their grandchildren’s lives. Some grandchildren spent time at their grandparents’ house and slept over on a regular basis. One grandparent was not able to have her grandchildren to stay because her house wasn’t a suitable environment for them, but she looked after them in their own home. Several grandparents talked about taking their grandchildren out - this is discussed further in Going out.

“He makes it quite clear what he wants and what he doesn’t want”
Some grandparents reflected on how their grandchildren didn’t always acknowledge them when they saw them, or how they could be quite “rejecting” at times. This was something they learnt to accept. As one grandmother said, she has learnt to respect what her grandson wants and accepts that she can’t spend equal amounts of time with her grandchildren because they have such differing interests. Another grandfather was undecided about whether his grandson is content with his own company or, in fact, “dreadfully isolated”.

Janets grandchildren are genuinely pleased to see her now which is a good response, as they...

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Age at interview: 65

Sex: Female

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When we, when we arrive if they’re busy doing something else, because they’ve got three rooms downstairs and they don’t always see us straight away. So either Mum or Dad will say, “Nana and Grandpa are here.” And they both come running usually. Usually and yes, they’re pleased to see us. And that’s a good response. We didn’t get that for a long time. But we’ve spent such a lot of time with them since we’ve been retired that we’re sort of familiar faces around the place now, and they do look forward to us going I think. They’re genuinely pleased when we go. And the little boy used to cry when we left, but he doesn’t cry now. “And they’re going back to Nana’s house now, you know, Nana and Grandpa have got to go back to their house. You’re staying at your house.” And you talk around this.

Helens grandson makes it very clear if he doesnt want her in the room.

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Age at interview: 57

Sex: Female

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So I like spending time with him because he’s interesting. But he can sometimes be very rejecting. He makes it quite clear what he wants and what he doesn’t and if, he loves music, so if we put music on and he doesn’t want you in the room, he makes it quite plain that you’re to get out. And I mean I don’t take that personally, I just find it quite funny really that he can just use his hand and push you out of the way. Go! It’s quite clear.

Jan struggled at first because she felt she ought to be doing more with her grandsons, but now...

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Age at interview: 64

Sex: Female

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I suppose that in terms of doing things with them at home, they’re interesting in as much as they’re quite self contained little chaps. They can go and bounce on the trampoline for an hour, an hour and half, two hours. They can run about in the garden, pulling the twigs off the hedge. And you, in a sense, you don’t have to do a lot. And it was something I used to struggle with to start with to start with, because I used to think I ought to be doing more. I ought to be sitting down and teaching them A, B, C or reading books. They’re not very keen on reading books. So it’s actually quite hard to get them to sit on your laps and do things. They, their concentration is very limited, so, you can, you can do activities with them. I tend to more activities when I’m there with my daughter and I may be helping.

I do a lot of textiles and craft work and I know that my daughter’s going to have a go at, there’s some kind of felt making that you can do. So she’ll get me along to help doing that kind of thing, because I know a bit more about it than she does. And… but on the whole you don’t have to do that much with them, other than the fact that you have to keep them safe, and keeping them safe is quite a big issue, because you need to know exactly where they are really all of the time. And you need to be clear that they’re not in the kitchen, the bathroom or the sitting room. Or likely to, you know, you need to be sure that the gates are shut in the garden and they’re not going to escape. You need to be sure that one of them is not climbing on the wrong side of the banisters, and hanging off the sort of top of the stair rails.

So there are things like that, which I think, that, in a way those are the harder things to manage. They’re also both doubly incontinent still. So you spend quite a lot of time dealing with that when you look after them. Their diets are quite limited. But they, they do talk to you in their own way, and they use what in this county we call total communication, but it’s similar to Makaton. So they use some of that. Not a huge amount, but they do use some, and they use the photographs. They use PECS, the little photographs and symbols, and they’re very good with them. So they spend a lot of time giving you pictures of breadsticks or crisps or whatever it is they fancy at that moment.

Dorothys grandson will play games with her, and it grieves her a bit that her granddaughter...

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Age at interview: 82

Sex: Female

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And whenever you have them, whenever you’re minding them what kind of things do you do together?

We do [grandson]’s very keen on jigsaws and any kind of games he likes. He likes draughts and any other game that you can dish up. [Granddaughter], I suppose has always played these games. It is, it does grieve us a bit that she doesn’t want to join in with these kind of games. She did as a little, as a little one. I suppose we used to make her and now, we do feel we have to respect her choices in these things. I mean, she may not, act like a fourteen year old, but she is now fourteen and you, you can’t have the same expectations as you did for the five or six or even seven or eight year old that she would come and join in family games round the table. She quite enjoys them when on the rare occasions when she does do it, but she doesn’t choose to do it.

She’ll sometimes come and read to us. She, she loves, she loves reading to us in all sorts of different voices, and dramatising, dramatising the voices. I suppose we’ve always read to her, I mean they’ve both been read to since they were very, very small, and of course one exaggerates the voices and dramatises the story and she loves doing that. And I think it’s very good that she does read, she reads to other children. Not only at her special school, but she reads to other children at she goes one night a fortnight to respite to a… and there are obviously other disabled children there and she apparently reads to them.

Brian and Lucy describe how they are part of their grandsons Saturday routine but he only...

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Age at interview: 70

Sex: Male

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Brian' Because of the way he is, and his set routine. I mean you know, that’s the main thing, is his set routine. And anything that changes that routine, this goes wrong and he just can’t cope with it.

Lucy' Hm.

Brian' When we go to see him, we’re lucky if we see him for about three or four minutes, because once we’ve said our hellos, he’s gone. He goes up to upstairs. And there he’ll stay until we leave.

Lucy' Don’t forget your bag.

Brian' We’ve even, he’ll even come down, half way down the stairs to see if we’re leaving yet because we’re not part of his immediate….

Lucy' Well we are… excuse me, but we are part of his Saturday, we always go on a Saturday afternoon. We are part of Saturday’s routine. So we arrived about three and we always have to arrive with a bag with some a ….

Brian' Presents.

Lucy' A couple of books or something wrapped up, and he sees us coming through the window and gets all excited, laughing and smiling, and sitting down and waiting and the minute the door’s opened, if we chat, like you do don’t you when you’re in the hallway. You can hear from, from the sitting room, you can hear, “Mm. Mm. Mm.” Where, you know, ‘what about me?’ Sort of thing. So we have to take the bag in. He tolerates us there while he’s opening the presents, then he goes upstairs to his bedroom. And then as Brian’s just said, after a few minutes. We stay for a cup of tea, he knows we have a cup of tea, and then he will keep coming up and down the stairs.

Jan finds it hard that her grandchildren want to retreat and be on their own.

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Age at interview: 64

Sex: Female

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I know now what to do, to retreat and sometimes they just want to be on their own. And let them, let them get on with it really. But it’s not very nice, and then it’s quite distressing and certainly one of them has big crying fits and it’s very hard to understand what’s the matter with him, and it’s difficult to intervene, whereas normally, it’s a child you would pick up and put on your lap, you can’t get anywhere with that at all. So he’s just lying on his mattress in his room, because they have very bare rooms, because otherwise they’d just destroy it all. So he just lies here and weeps really, and sort of late at night that’s quite hard I think.

Many people had learnt different ways of managing their grandchildren, and this is discussed further in ‘Emotions’.

Bryan reflects on how he used to try and communicate with his grandson in a way that he couldnt...

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Age at interview: 72

Sex: Male

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Bryan' It’s interesting actually that that first started when he was quite a lot younger, I think in his earlier teens. We found that he would very frequently repeat back a phrase that somebody else had used, maybe as much as ten or fifteen minutes early, earlier, and not in context. And it took us a little while, it took me a little while anyway, to understand this was his attempt to relate to a conversation that had moved on, which he really wasn’t following. But he wanted to. He really did want to be involved and was finding it difficult and the only way to do it was to say well Bloggin’s said that and people laughed so if I say it, maybe they’ll laugh again and I’ll be included. And it was that sort of almost parroting something that had happened, that he was striving for inclusion and couldn’t understand when it didn’t work. And I suppose I took me a little while to realise that was what it was, and not to simply say, “Oh that’s silly.” And give an inappropriate reaction which I tended to do, which was wrong of me. And I recognise it, but there you go. One reacted as one felt at the time. He has always struggled to be included. Sometimes he makes it and sometimes he really completely doesn’t. And he struggles with it, constantly. But it’s not a wish not to engage. It’s inability somehow to engage.

Irene talks about how she involved her grandchildren in the organisation of a family party she...

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Age at interview: 61

Sex: Female

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Last year I had a significant birthday and so did my husband, he’s younger than me, but it was a significant birthday and there’s no way I’m going to separate a party, a family party, or an extended friends without having my boys, because they’re the apple of my eye and the delight of my heart. So we had to plan things very carefully. And I knew that they’d need, the boys would need their own spaces, their familiar spaces indoors. So we planned an outside party, which meant we had to have it away from our actual birthdays because we had to have it in the summer, and pray the weather was nice.

But it took an, not just the normal sort of thing of arranging the food and arranging the putting up of gazebo, party gazebo and all those things, and making sure you know who’s coming. But it was warning the family that if the children were in the special places it meant that they’d had enough and that they weren’t to be approached, you know, even though auntie or uncle or brother or sister or whatever might want to, that they’d taken themselves away. And then I had to broach it with the boys and sort of almost get their consent. “Now look Grandma really, really and Grandpa really would like to have family down, and we want to have music. And now we know that you don’t like music on, but we’ll have it in the garden and…” We found sort of giving them ownership of it helped because of this control thing. “So what do you think it would be nice for Grandma to have at her party?” “What do we like to have at parties?” You know, and then involving them. So choosing even the serviettes or choosing the balloons. “Can you come round and help Grandma put up the tent so you can see how big it is? You’ll be such a big boy, you know, you can give grandpa the pegs and we can put it in so…” And actually, it worked.

I mean it was a big gamble because it might not have worked, because other family events I’ve had, even when I’ve had barbecues in the garden, people have come through this space, through to go to the toilet even, and my grandson has said, “Hello, hello. Outside. You go in the garden please. You go in the garden please. Outside. Outside in the garden. And I didn’t know how it would work, but giving them the ownership and giving them the right to not have to join in if they didn’t want to. If they wanted just to be on the computer or on the Wii or whatever, fine. This is their space, their upstairs rooms. They’ve got rooms here that they see as their bedrooms. Do you know what I mean?[inhales].

It just took a lot of organisation and it paid off on the day and it was absolutely brilliant. And I couldn’t believe the sort of other side of my grandson, the social side. He decided… of course he had to boss everybody, he had to tell, “Oh the candle in lantern’s gone out in the tree. It needs to be lit.” He had to be in command but it was a kind of social side of him.

Last reviewed August 2018.

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