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Having a grandchild on the autism spectrum

Being a grandparent

Being a grandparent of a child or children with autism spectrum disorders (ASD) has both similarities and differences to that of being a grandparent to any child. Grandparents of children with ASD often play a more extended or intense role in the lives of their grandchildren compared to other grandparents. Some grandparents we talked with were very involved with both their grandchildren and their children’s lives. Others were less involved, but made it clear to their children that they were there if they were needed. The key support was the practical, emotional and sometimes financial support they provided to make the lives of their children and grandchildren easier.

“I’m a much needed granny”
Several grandparents were aware of the importance of the support they offered their children and grandchildren. A few had moved nearer to their children and had been on courses run by the National Autistic Society to learn more about autism. They were aware that the support they offered was over and above that which they may have offered their children if their grandchildren were not disabled.
 

Jan found “"finding a role in the initial stages when you’re grieving is helpful”."

Jan found “"finding a role in the initial stages when you’re grieving is helpful”."

Age at interview: 59
Sex: Female
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And grandparents can either be involved in being part of the course or babysitting to allow their kids to go there. So there’s a real role and I think finding yourself a role in those initial stages where you’re grieving is really helpful. It worked for me [laughs]. It did make me feel better I think, that I could at least come along and offer some advice as to where to go and what to do, and what help was available.

 

Irene: “Something in their lives has curtailed the range of what they will be able to step out...

Irene: “Something in their lives has curtailed the range of what they will be able to step out...

Age at interview: 61
Sex: Female
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We always have that expectation that we raise our children, we borrow them don’t we for the time we’re privileged to have them and our duty is to see them through to adulthood and if you’ve done your job right, know that they’re stepping out into life with confidence. And knowing that something has happened in their life has curtailed the range of what they can step out into and realising that you want to be supportive of that. Also makes you look at the pattern of what we may be needed to continue to support for those grandchildren knowing that they’ll find some things about coping with life out there much more difficult and I’m sure with the older child he’s actually probably going through his most difficult period in life right now. Because I think school puts a huge demand on children anywhere along the spectrum.

 

If Helen'’s daughter asks for something, and it’s within her capability, she will do it.

If Helen'’s daughter asks for something, and it’s within her capability, she will do it.

Age at interview: 57
Sex: Female
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And how do you see your role in terms of your daughter? What role do you play for her?
 
Oh I hope, if she was here, she’d say that I was a support for her. I’m a confidante. I adore her. That I’m passionate about being as good a Grandma as I can be, given the constraints I’ve got, the time, energy, money, physical ability and all the rest of it. I’m not, I don’t think I can still quite do enough because of those constraints. I wish I was available more. I wasn’t prepared to commit to every Friday afternoon, or every Wednesday morning doing something, because I wouldn’t want to be tied like that. Partly because I had spent a lot of time being a single parent mum myself, I didn’t really want to do it all over again with my grandchildren. Not that my daughter is a single parent, but I didn’t want to make those, that levels of commitment that I couldn’t sustain. So I’ve never promised anything I couldn’t deliver. But if I’ve got, if, if she asks me for something, and it’s within my capability, either physically, mentally, emotionally, practically, financially, or any other way you want to think about it. If I can I will.
 
 

Rebeccah will “bend over backwards” to help regardless of how inconvenient it may be for her.

Rebeccah will “bend over backwards” to help regardless of how inconvenient it may be for her.

Age at interview: 64
Sex: Female
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And how do you think it’s affected you as a family unit?
 
I don’t know. Again how can you tell because you don’t know anything other? We do a lot more for our children and grandchildren, or at least for that little family, than was ever done for us. But that may be a generational thing. There’s more expectation that we should do more, and not having much done for us has made us more aware that people would like to be helped more often. So yes. I think that’s it, really. That’s what I can say about that. I’m more prone to drop, I mean probably if there were not the problem, and somebody were to ask me to do something and it was not convenient then I would be more likely to say it was not, whereas now, I would bend over backwards to do it, regardless of how inconvenient for me, and for us, should I say really. So that may be a difference, you know, you’re always aware and you’re always thinking, you do think how can I help here? 
 
And I have been supportive, I mean, my daughter-in-law’s been involved with organisations to do with Asperger's and I’ve gone along and talked to them and got to know them and you know, in a sort of professional capacity, to see where I can be of help.
 
One grandparent said that it was wonderful to look after her grandchildren and to be trusted enough with them. She felt an extra level of responsibility because they were so special to her daughter.
 
“I can usually tell when my daughter and son-in-law are ready for a break”
One of the ways in which many grandparents supported their children was by looking after their grandchildren; either sharing in their day care or babysitting in the evenings and weekends. Providing child care was the best way to help their children. A few grandparents talked about the reassurance their children felt when they looked after their grandchildren. While respite care may be available, the grandparents were felt to know the children better.
 

Janet and her husband play a major role having their grandchildren to stay for weekends.

Janet and her husband play a major role having their grandchildren to stay for weekends.

Age at interview: 65
Sex: Female
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Sorry, my role is keeping them amused basically. We have them for weekends. My daughter, to give them, my daughter and son-in-law a break. We had them just recently for a weekend, and we’ve got annual membership to a country park, with a play area and animals and gardens, Victorian walled garden and things. So they like to go there. So that’s usually a trip for one of the days. They like swimming. They’re both good swimmers. They love water. So that’s another activity that they enjoy. And they like being in my home as well as their own home. We’ve got different toys here, and different activities, and my husband their grandpa is good with them. He’s one of five children, with a ten year gap, and the older ones and the younger ones. So he was brought up with younger children around him. So he’s got lots of patience and understanding, and probably more than myself! But it works really well, and we don’t have any problems with them. They go to bed when we have them, and bath time, bedtime, we read stories to them and, just like regular kids really. But ….

 

Brenda’s daughter is at her most relaxed when she looks after her grandson because she knows she...

Brenda’s daughter is at her most relaxed when she looks after her grandson because she knows she...

Age at interview: 56
Sex: Female
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I said do you worry for your daughter’s future?
 
Yes. I do worry for her, and I know that, something was mentioned about respite for her, and although she said to me, “Although it would be nice to think I could have a weekend to myself.” Her worry would be that he would go to somebody and they wouldn’t treat him nicely. So she’s obviously concerned about if she lets him out of her control, what if he kicks off with somebody, what if he hurts somebody else? And what if he wasn’t treated nicely? You know, you hear all sorts of horrible tales don’t you? So I suppose when he’s with me it’s probably one of her times when she’s t her most easiest or relaxed, because she knows how I am with him and knows that I will cope with him, whatever happens. Although she will phone and say, “Has he been all right?” And I can hear this worry in her voice, is he okay? Has he been all right? “Yes, he’s been fine. He’s okay.” And I will tell if he has a funny little moment, but I think I’m quite lucky that I get the better sort of times with him, but then and probably because it’s the novelty, it’s the nice thing to come to nanny isn’t it, I’m not the person you’re with every day, you know day in, day out.
 
Until he was diagnosed and his mother decided to give up work to care for him, one  grandparent was the full time carer of her grandson. While she was very upset at losing this role initially, over time she found her support was needed at different times and she became the primary carer in the holidays and on inset days. Other grandparents described a developing caring role that was more ‘ad hoc’, as on occasion they would take children to appointments or look after a sibling, rather than becoming the primary carer to enable their child to work. This childcare could be hard work for grandparents. Some of the grandchildren had little awareness of danger, or could run off if gates or front doors were left open (see ‘Going out’ and ‘Rewards and challenges’). Some grandchildren were in nappies beyond the typical age for toilet training or could become very distressed if their routine was disrupted. A few people had more than one grandchild with ASD and looking after both could be tiring.
 
“Everybody knows I’m kind of there in the background” 
In addition to providing childcare, grandparents provided other forms of support. A few grandparents were in a position to offer financial support, by buying their grandchildren toys, DVDs and equipment, paying for private nursery fees or making additional financial provision for them in their Wills. Being able to provide financial support was difficult for those who had retired and were on a small income. They provided emotional support, allowing parents to “moan”, “vent their anger and frustration” and acting as a “continual sounding board”. Some provided advocacy support, sharing with parents any new bits of information or research they came across. A couple of people were more closely involved in advocacy work (through their backgrounds) and helped to draft letters to official bodies. One grandmother described herself as the “researcher” and felt she was fighting for her grandson’s rights.  
 

Bryan and Moira have supported their daughter and son-in-law in the difficulties they’ve...

Bryan and Moira have supported their daughter and son-in-law in the difficulties they’ve...

Age at interview: 72
Sex: Male
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Nothing has been easy, simple or straightforward. Every single piece of help that they have obtained for [Grandson] has had to be fought for, every inch of the way, over what seemed on occasion to be an uncaring authority. Now it hasn’t always been so and on many levels the help that they’ve received has been given, but it has always seemed to be bureaucratically a nightmare, and, therefore, one of the roles that Moira particularly has fulfilled and I’ve tried to fulfil is to support them in those difficulties and allow them to just vent their anger at the frustrations that they have felt in dealing with a sometimes very unfeeling bureaucracy that didn’t relate to the reality of the life they were living. And that’s been, as far as I’m concerned, probably the most important role we’ve fulfilled. We haven’t been able to do anything much more than that, but be there for them regularly and whenever and for as long as in whatever way, and so on.

“It’s my role to give my grandchildren good childhood memories” 
Some saw their role as enhancing their grandchildren’s lives; providing love for their grandchildren and doing things with them that they would remember. One grandmother said that one of her roles was to expose her grandson to “as many cultural and artistic things as possible, so that he has a rich childhood”. Another emphasised the importance of “relishing the time you have”, because as grandchildren grow older, they will start “to see you as a boring old fart”.
 

Brenda wants to try and make her grandson’s life as happy as possible.

Brenda wants to try and make her grandson’s life as happy as possible.

Age at interview: 56
Sex: Female
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And what would you say is your role?
 
My role? ...Just to be there, when they want me. Sometimes, I can’t always be there, and I don’t want to sort of feel that I’m being put upon, but just to be there for them and try and support, and make his life as happy as I can. You know, that’s what I like, all my grandchildren to be happy. And if he’s happy, then I’m happy, you know, and when you see his little face and he’s all smiles when he sees you. It’s hard to explain. You just, you know, you just love him, everybody loves him. And his teachers said he’s such a sweetheart.
 
 

Interview 7 sees her role giving her grandson respect, acceptance, love and happy memories.

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Interview 7 sees her role giving her grandson respect, acceptance, love and happy memories.

Age at interview: 63
Sex: Female
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And with [name] I think my role is to be a granny. Just like with all the others I want to give him good childhood memories, you know, play with him, and respect him, the way he is. You know, accept him the way he is and love him the way he is and that’s the same with the other children.

 

Jill sees her role as making sure that her grandson has extra resources up his sleeve so he is...

Jill sees her role as making sure that her grandson has extra resources up his sleeve so he is...

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, 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.
 
I feel that part of my role is I must fit him for life with her. If I got knocked over by the bus or became old and frail or something... I would like to know that he’d already been given quite a few inner resources. So that he could help to look after his mother, rather than just the other way around. Even if he, you know, were still a child when he had to do without me.
 
Obviously this is what any parent or grandparent wants for the child in their family who is a little bit more vulnerable. You just are all the time thinking how can I make sure that they’ve got these extra resources up their sleeve so that they are not too helpless, especially if I’m not around.
 
Can you explain what those resources are in more detail?
 
I suppose I’ll just list them. He’s got to be able to... learn to get himself on and off a bus or train. He’s got to be able to use a mobile phone. He’s got to be able to be handy with a computer. He’s got to be able to say please and thank you and sorry. He’s got to be able to, now this a difficult one. He’s got to be able to put himself in other people’s shoes and know what other people want. For him that seems to be extra difficult.
 
He’s got to be able to... be aware of danger. He’s got to be able to at least mimic and understand what ordinary behaviour is. I mean we all learn that. And he’s got to be able to, this will sound a bit peculiar, he’s got to be able to pass himself off as, as ordinary as possible even if it’s somehow acting, even if it’s not normal for him or even if it’s an effort for him, he’s not got to go out and, and act weird. He’s got to be able to understand that he mustn’t act weird. Otherwise he’s going to be at risk in all sorts of ways.
 
I suppose that’s something very important to teach him. But maybe not, too much just yet, because I, because teaching somebody not to act weird means that you’re kind of telling them that they basically are weird. And that that’s not a message that I want him to have. So there’s a lot of kind of double-think and double-speak in store for us. But its early days yet and I want him to feel as happy and carefree as possible, while he, while he’s still just a little boy.
 
We didn’t do so many of the routine, ordinary, basic, grounded things that my parents did with me, and which I’m s
“You always sort of have to have the two hats on” 
Several grandparents reflected on the way in which their role was more diverse as compared to the typical grandparent role; how they had to have the “normal grandma” hat and but also to try and see the world through the eyes of their grandchildren to find out what is difficult for them.
 

Irene describes how it takes extra time and effort to work out what the problem is as well as...

Irene describes how it takes extra time and effort to work out what the problem is as well as...

Age at interview: 61
Sex: Female
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Some of the things that my grandson finds physically difficult even at seven. He finds, he’s very worried about balance. He sometimes has difficulty in balance. When he was younger he liked all his chairs with sides. So he didn’t like sitting on stools and one of things, he’s always found quite difficult is taking himself to the toilet, because and he, even at seven he still needs to have the baby seat, because it’s not so much balance. And even will sometimes still hold the walls on the side of the toilet cubical and he finds actually finding, identifying where to wipe behind him, in the same way he finds it quite difficult if he’s hurt to identify exactly where the hurt is in his body. He’ll know something’s wrong but then obviously if he’s been playing, and he, you know, maybe you are getting dinner, you know, and the phone’s rung and you’re just talking to someone on the phone and you don’t see that he’s bumped himself, he might not be able to tell where the bump is. So you have to take extra time out to help him in those sorts of situations. And it’s very hard because sometimes the older child might have to wait longer. And then there’s times when the little one is just poottling along quite happy, playing on the Wii and doing his own thing and it’s interrupted because the older child’s had a complete behavioural meltdown over something and he’s ranting and raging and upset. And it affects the younger child and it’s keeping that balance all the time and making sure you’re there for both of them. 

 

Interview 7 encourages her daughter as much as possible and tells her what a fantastic job she is...

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Interview 7 encourages her daughter as much as possible and tells her what a fantastic job she is...

Age at interview: 63
Sex: Female
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It’s already very difficult to feel that you’re a good mum when you have an autistic child.  She is a very good mum. She’s fantastic. And I keep repeating that to her. I keep reinforcing that to her, and saying how much I admire her, and that she’s so brave and that she does a fantastic job. And I don’t say it in general. I give her examples and I do tell her, and it’s true, a lot of mums would just accept, and she doesn’t, she doesn’t accept, she pushes him  in all sorts of possible way to make progress. Wherever she sees an opportunity like with this circus school, she thinks yes, let’s, let’s try this, let’s try that. 

A couple of grandparents worked in relevant areas, such as children’s services, and talked about taking on a ‘key worker’ role as well as a grandparent role. This was partly because of the lack of support offered to their children by health or social care.
 

Jan’s grandson’s has been lucky because his grandmother was aware of what his rights were.

Jan’s grandson’s has been lucky because his grandmother was aware of what his rights were.

Age at interview: 59
Sex: Female
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I think they’ve, they have found it helpful that, and it has been helpful for them and [grandson] that I do work in this field, and so I’ve known the right contacts. I’ve known what buttons to press at the right time. I can remember not, not long after they moved to, well not long after the diagnosis, probably about a year or so after the diagnosis, they attended the National Autistic Society programme of, for families that had a newly diagnosed child with autism, and they went along to that, and what they came away with was how lucky they were, that I’d known what to ask for at the right time, because compared to the other families in the group, they were so much further ahead. You know, they already had their statement in place, and they just sort of knew what kind of strategies to use and so I think that has been helpful. So I think, in some ways [grandson]’s been lucky that he had a Grandma that was kind of aware of, you know, what his rights were. And pushed for them quite early on [laughs]. So I say I’m pleased I was able to do that, and that’s one of the main ways I support them really. That’s why I still go to school reviews with my daughter for example. I enjoy it, and I like being part of [grandson]’s life, but it does help that I do know, you know, what the law says and what they need to provide and so on. So, I always make sure that he exercises his rights, so but yeah, as I say, I think probably they have disagreements sometimes as to the way they should manage him but I think all parents do with their children whether they have autism or not, so, that’s perhaps have, you know, slightly more. I don’t know [laughs], ask them.

“Supporting the sibling is as important as supporting the child that is diagnosed” 
Some grandparents talked about the support they gave to their other grandchildren. For example, one grandparent said that it was her job to make sure the sibling didn’t lose out too much; “Our job will be to make sure we have days with them separately and then there are treats and wonderful things for him, and he won’t feel that he’s been overlooked”.
 
“I try to be conscious of my role, of the boundaries” 
It was apparent that several grandparents had reflected on their role as grandparents and talked about being aware of the boundaries and expectations involved in their role. Many were careful not to intrude in their children’s lives too much. One grandparent said she is always there as a sounding board for her daughter but never gets involved in the decision making. Another couple said “you have to be guided by the child’s parents, because ultimately they are the people responsible for him”. They also talked about making sure that they looked after their own needs as well. In addition to their own interests and hobbies, they needed to put time into their marriage, or looking after aging parents, for example.
 

Helen is careful to stand by the decisions her daughter makes about her grandson.

Helen is careful to stand by the decisions her daughter makes about her grandson.

Age at interview: 57
Sex: Female
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But I’m very careful, I try to be very careful, I’m sure I don’t get it right all the time. I try to be careful that, you know, she is his mum. She makes the decisions. I will honour the decisions she makes. I will stand by her decisions she makes. It’s not my job to make decisions. If she asks for my advice I might not give it as straight advice because of my counselling background. I might say, “Okay. Well what have you thought?” “Well you could look at it this way.” “You might want to look at that way.” I try not to, apart from, you know, what about the school? And it was just so obviously beautiful I mean, you know, well if he was mine I’d send him here. But she asked me a direct question which required direct answer in that case. So I think I try to be conscious of my role. Trying to be conscious of the boundaries where they are, I’m a grandmother. Try and be as helpful as I can be. I’m not as available as perhaps she’d like me to be, because I work. 
 
And what, other things do you see as your role?
 
What are the things I see as my role? Well I do things like babysitting. When I had slightly more income than I have now, personal income. I would go and buy, you know, clothes for the grandchildren. I really loved doing it and that would be fun. I see my role as being somebody to play with the children, somebody to support my daughter and her husband. I’m a sounding board if they want to say things, or chew the fat. I’m a researcher. I’m a great researcher. When we were coming up to Tribunal I was ferreting around. I found some significant, I found a significant piece of stuff, I can’t, which we took to Tribunal and was very helpful in shaping the Tribunal decision. So I was, and when she’s had other fights with bits of the local authority or medical people or whatever, and I will say to her, “I’ll draft you some letters” ...because she hasn’t got the time... “I’ll draft you letters. I’ll send them down as email attachments, you can then shape them up and make them your own. But I’ll do the donkey work of drafting the letters and then you can do with them what you want.” And my husband and I often do that. We often draft letters for her. Not because she can’t write them. She’s very, very capable of writing letters, but she is very time short. So we can shape it up, well draft it, she can tweak it. So we do a lot of, well we have done not so much lately, we haven’t… fortunately it hasn’t been necessary. 
 
One couple said that they’d realised they had to take a backseat with their grandson; as he didn’t enjoy social interaction, he wasn’t going to be a part of their lives in the way they anticipated and they had to accept that (see ‘Everyday life and emotions’).

Last reviewed August 2018.

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