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Having a grandchild on the autism spectrum

Support

We asked the grandparents to tell us about the support they had, or the support they would like. Most focused on their children and the support they received (or needed), rather than themselves. They felt their role was to provide support for their children and grandchildren (see ‘Being a grandparent’) and some seemed surprised when asked what support they, themselves, would like.
 
“You have things to deal with and you need support to do it”
The different forms of support grandparents described their grandchildren receiving included portage workers (Portage is a home-visiting educational service for pre-school children with special educational needs and disability and their families), speech and language therapy, incontinence support, Barnardos Early Years Projects, autism outreach support workers and various after school clubs. A few parents received Direct Payments so they could buy in support workers to provide them with a break. Some of the children also received financial support in the form of Disability Living Allowance, Motability and Disabled Facilities Grant (which enables people to adapt their homes in particular ways).
 

Janet’s daughter uses direct payments to employ someone to help with her children.

Janet’s daughter uses direct payments to employ someone to help with her children.

Age at interview: 65
Sex: Female
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There’s also, I don’t know whether it’s nationally or if it’s in just this area, but [daughter’s name] now, she didn’t like the idea of them going into respite. Because of the role we play it’s sort of easier if she wants some time or they want to go away for a weekend for us to do it, and she’s happier with that, than them going into respite. So there is a scheme called Direct Payments. So [daughter’s name] has been given a bank account and a set number of hours each week and she’s employed the lady that was the escort on the bus when they both started school, because she’s familiar with the children. They both like her and know her well. So that’s helped a lot within the last or so.
 

The portage teacher taught Jan how to encourage her grandsons’ interaction skills. The Hannon...

The portage teacher taught Jan how to encourage her grandsons’ interaction skills. The Hannon...

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.

“Some people are skilled at support, others are a bit blunter”
Some grandparents said that support was either not available or wasn’t helpful to their children or grandchildren. Others worried that support would be cut because of the current economic climate. One grandparent, who cared for her grandson full time, was not able to claim carer’s allowance because she was beyond retirement age. This left her financially unable to do some of the activities with her grandson that she felt would benefit him.
 
While they could identify support that would be useful, the support provided sometimes made things worse or caused their children upset or anger. One grandparent felt she was seen as “uncooperative” when she turned down some support offered to her grandson, who she cared for full time. Another felt that the mass of advice coming from different people and agencies could get overwhelming and that the “ownership” of dealing with her grandson should be brought back to her daughter.
 

Irene explains why her daughter feels “deskilled” by the support offered and “had a complete...

Irene explains why her daughter feels “deskilled” by the support offered and “had a complete...

Age at interview: 61
Sex: Female
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And so some people are very skilled at giving you support and other people perhaps are blunter, and sometimes if people come out with things… well, a particular day, my daughter had a complete sort of meltdown on the phone to me, and she said, “Mum, I know everybody’s here and I’m really grateful. I think I’m incredibly lucky to have all the support services coming in.” She said, “But if I hear one more person saying, ‘Have you tried this?’” She said, “I’m going to have a meltdown myself. I shall lay down on the floor and scream and kick.” She said, “Because if you’re getting it from lots of different people who are making suggestions around may be the language support, and may be around the mobility support, or may be around behavioural support, and they all are saying, and you’ve gone to them when you’re quite upset yourself and said, “Look I really need some help.” And then it almost deskills you in a little bit, because you think, “Well have I not tried hard enough.” Or she said, “It panics me, if they’re suggesting things that I’ve been reading up about and I’ve tried to put into place and then they say, ‘Have you tried?’ And I think that’s the only suggestion they’re coming up with and it didn’t work. It makes you feel panicky. Oh my God, nobody can help me.” You know, where in actual fact, the best help that she had was where people just honoured what she’s already doing, took her down calmly, saying, “Well we realise that you’re at the end of your tether over this or whatever. When did this first start happening? Let’s look at it. What have you done… well you know him really well, what have you done before in the past, you know, based on your way that you relate to him has really worked? Can we use that to that help with this problem?” And even gave her… when people approach you like that it can even, they said, “Well why does this problem actually really matter at this moment? Have you thought about, you know, who suggested this? Is it right at this moment to even tackle this? If it’s making you all very unhappy. You know your own child better than us”. Someone who supports her in actually building on her skills, giving her back the ownership to dealing with her own son, and refocusing the attention away from what she or obviously, her husband as well, I’m not knocking him out of this equation at all, but obviously she’s my daughter, so she’s the one whose chatted to me about how she feels. But focus it back on what is the problem for him. For the little one. The one they’re most trying to help. And not… so she can be clear about how she’s helping him and they can be clear about her wish is to support him. And not to be questioning her own skills or questioning her own abilities as a parent. Because that’s unhelpful. 

 

Jill didn’t take her grandson to the behavioural classes he was offered.

Jill didn’t take her grandson to the behavioural classes he was offered.

Age at interview: 69
Sex: Female
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We were offered something, I didn’t want... and he and I were supposed to go to behavioural classes. It may seem unkind of me to have deprived him of those but I think within his problem, I think he behaves beautifully, and I’m often told so. I know he’s a nice person. So I know my grandson is a nice person. And I know he doesn’t cause harm deliberately when he’s putting out his foot to trip people up or something. Maybe I should have let him have the behavioural classes, but something in me, okay, maybe it’s my problem, and maybe it was wrong of me, but I just felt it was unfair to label him as somebody who needs lessons on behaviour when he’s basically not badly behaved. And, I don’t want him to get the idea that somehow he is a badly behaved person. I don’t want him to… he says please and thank you and he’s kind and so on, quite naturally. I don’t want him to have to feel that he’s forcing himself to be good in inverted commas. And I want him to feel that the help he’s offered is appropriate help and I want us to be able to turn down some kinds of help. 
 
As he gets older it will be easier for me, because the onus won’t be on me. He’ll be able to say for himself, and I hope people will respect it when he’s offered things that he thinks are inappropriate, he’ll be able to say, “No. I don’t want that,” and I hope that’ll be okay. At the moment, we or I can get blamed for being uncooperative and not cooperating if I turn down certain help and support, but in some ways you’re offered too much.  
 
Support that people thought would be helpful to their children included targeted support for specific behaviours, professionals that had some understanding and awareness about autism, and support that was “definite, clear and straightforward”. A few grandparents said they would have liked to have known about support groups where they could have shared experiences with other grandparents.
 

Jill would like a professional to teach her grandson how to travel on public transport.

Jill would like a professional to teach her grandson how to travel on public transport.

Age at interview: 69
Sex: Female
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What I really wanted. I started off asking the school for this, but they said they understood why I wanted it, but they didn’t have the resources to do it. What I really, really, really want, because my grandson’s problems are to do with movement and being out, and being in, putting himself in danger when he’s out. I’d like somebody who somehow was trained. I don’t know if my grandson, he can’t be the only person with this particular version of the problem. There are surely would be some kind of therapist who understood how to do what I want, and is maybe trained for it, but nobody has been able to find such person for us.
 
What we need is somebody who can show my grandson how to walk without zigzagging, without jumping over the nearest wall. To look before he jumps over a wall. To understand that if he turns round suddenly he may not, he should look first and see if there’s somebody there, so he’s not going to knock them over. I tried to show him these things, but I think by the very nature of the fact I’m the person he lives with and I’m the person who cooks him his meals and is bossy about all sorts of things like his socks and his jumpers and it’s difficult for him to pick out what he should... really... be listening to when I’m talking to him, and what is just oh grandma going on and on as usual.  And... so it would be wonderful to have a professional who by very nature of the fact that my grandson doesn’t know this person. The person is a neutral person who is a stranger. And so gets treated with that kind of respect that you treat a stranger with. Who can show him how to walk, how to turn, how to be in the street. How to be on public transport. It’s as simple as that, and so far we haven’t yet found something like that. How to not put your foot on the wheel of a bus that’s just about to go off, to drive off, you know.
 
 

Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.

Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.

Age at interview: 57
Sex: Female
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I guess it may have been helpful, that at the front end of all this, if there had been a website or a group. I don’t know that I would have wanted it for very long, that I could have gone to, and talked about what it felt like for me being the Grandma, and watching my daughter and her husband suffer, and looking at my little grandson suffer, as I think it is a suffering really. That might have been helpful, but I can’t imagine I’d have been wanting to, you know, month after, but others might have. Excuse me, I must just rub my eyes, because they feel a bit dry. So for me, because I’m a reader and I access stuff and go hunting around. I mean if anybody in the family gets a kind of weird illness then I just go and check it out on the internet and have a look and see what its, you know, what does this mean, and what are the symptoms and what’s the cure. And you know … 
 
And I would, so that’s the kind of person I am. So I suppose I found my own way through it, but to have had a group that I could have gone to, maybe two or three once, a month for two or three sessions where people might have said, “Yeah, it does look pretty bleak when a child is two and a half. It looks appalling, but actually, you know, you will get to a point where it isn’t all great but you will accommodate it and there are fun aspects to this, and it’s not all gloom and doom and you, there’ll be great moments of laughter and you know…” If people who lived with it had said, could have shared their experience and said, it wasn’t all so dreadful because that November was just the pits.
 
“You feel I’m not the only grandma having to do grandma plus”
Some grandparents were involved with support groups and they found this very helpful. They could share experiences, learn different tips and feel reassured that they were not the only grandparents in this situation. As one grandparent who didn’t know of any support groups said, “There is a sense of being alone. You know, different, separated, isolated”.
 

Janet is part of the “grannies army” that is involved with the support group run by her daughter.

Janet is part of the “grannies army” that is involved with the support group run by her daughter.

Age at interview: 65
Sex: Female
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And we’re, we’re finding talking to, we’re involved with groups that my daughter runs. We have a monthly meeting of parents - my daughter runs a support group - and we have monthly meetings at an old school that’s a family centre. There is a sensory room there, an art room where they can paint and draw, toys, an outdoor play area. And my husband and I both are involved with that. I run the coffee shop for parents. And my husband and I, we make, they knock off half way through and have a break and the kiddies all get toast and juice, and a sit down, you know, a rest period half way through the morning. And so that’s pretty good. 
 
And we have quite a few grandparents that are like us that have got, you know, really involved, wanted to be involved. And my daughter calls us ‘grannies army’ [laughs]. Because you know, we’re all sort of in the same position and we’ve all mixed socially together now and meet up and have gatherings and outings and things involving the children. 
 
Sometimes it’s just the parents and grannies, and it’s really good. And so we’re trying to all of us, as grandparents and parents to the... you know be as supportive and positive as we can, and function that way, and its working quite well really. But the long-term I try not to think too much about long-term, because as I say my husband and I are both in our sixties and I find that a bit painful that when they grow up I might not be around. 
 
 

Irene finds it helpful to have parents and grandparents at the support group so they can share...

Irene finds it helpful to have parents and grandparents at the support group so they can share...

Age at interview: 61
Sex: Female
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I think the ASD support group that I belong to has been good, because sometimes we have grandparents there, who are actually the daily carers and they actually are the carers for their children, for their grandchildren as in loco parentis and sometimes it’s a two way thing. They’ll say, “Oh my Mum feels that as well.” And sometimes then the Mum will come along to the, you know, the parents’ Mum will come along and we can have a chat. And sometimes they say, “Oh would you mind having a chat with my Mum. She’s finding it difficult to understand the situation, but because you know, you’ve now been doing it for quite a long time. From two to seven you know, is quite a long number of years to get your head round some of it. I think, you know, it would be really useful that you could share, and to let her know that, you know, that the little one having such a restricted diet, you know, because she worries about, she worries all the time about what can I feed them if I’m looking after them and things, things like that.” So I can say, “Oh we’ve been there. You have to actually just sort of accept, you know, whatever it is. 

“Support? Why would we?” 
A couple of grandparents said that they supported each other and didn’t want any external support. Others got their support from friends and felt that this was all they needed. Many also said that it was their duty to support their children in any way they could and not be at the receiving end of support; as one person said, “My job is to give support”.
 

Jan’'s friends provide her with support both personally and professionally.

Jan’'s friends provide her with support both personally and professionally.

Age at interview: 59
Sex: Female
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I think I was quite lucky actually because I got support from… of the three very close friends, two did the same work as I do. That’s why we’re such close friends and they gave me fantastic support, because that’s what they do for a living and they understand, that’s where they’re coming from. So I think I was quite lucky that I did get that sort of, it didn’t occur to me at the time that actually, to think well I want to talk to someone who’s in the same position. If that makes sense, because I thought I was externally well supported and I could actually talk to my friends about how I was feeling which I wouldn’t want to, you know, talk to my daughter about, because she’s got to come to terms with what’s happening to her, you know, and her family, without thinking about the effects on the grandparents.
 
So, and I think that’s important. I can see that other grandparents would need that sort of support, and I think I was lucky with who I had, and the people that I know of course, gave me the sort of networks and contacts that I needed to, to find out the information that was very important to me.
 
 

Brian and Lucy are “of the old school” and just get on with it.

Brian and Lucy are “of the old school” and just get on with it.

Age at interview: 70
Sex: Male
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And what about the support that you’ve had. Have you been offered any support as grandparents?
 
Brian' No.
 
Lucy' No. Well we haven’t looked for any …
 
Brian' Well no I don’t think we need it.
 
Lucy' … in all honesty have we?
 
Brian' We don’t need it.
 
You don’t need it?
 
Lucy' I don’t think so.
 
Why do you think you don’t need it?
 
Brian' We’re of the old school, you see.
 
Lucy' Well I suppose because we think we get on with it.
 
Brian' All these people say “Oh, this trauma” and they have to be counselled and all the rest of it, but they’ve never happened in our time. And it doesn’t happen now. So I’m not really bothered. No. No. I don’t think there’s anything for grandparents. I don’t think they need it. Quite honestly. All we need to do is to be able to comfort the other people. Support. We pass on our support. We don’t need support, we pass it on. We give the family support.
 
Lucy' Hm.
 
Brian' As the old stages of the family, the old folks.
 
Last reviewed August 2018.
Last updated August 2018.

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