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Having a grandchild on the autism spectrum

Going out

Many grandparents talked about the difficulties that could arise when they went out in public with their grandchildren. This was frequently because the general public often don't recognise the characteristics of autism spectrum disorders and assume that their grandchildren’s behaviour was ‘naughty’ or needed some intervention. The grandchildren could become very distressed in public as they were sensitive to some types of lighting or sound, or disliked going to unfamiliar places. While the grandparents could understand why their grandchildren sometimes found going out difficult, they didn’t want their grandchildren to become isolated and so found ways of managing outings.
 
“People look on in slight amazement and bewilderment” 
Many grandparents had experience of people gawping at them when they were out with their grandchildren. People would stare, tut or sometimes pass comment. One grandparent lived in a county where there were a lot of people with learning difficulties, so people were used to different behaviour and this made going out easier. Others too recounted some positive experiences in public and had hadn’t felt bothered by other people. One person explained how her daughter’s local supermarket was always particularly helpful when she was out shopping with her children.
 

Bryan says that people physically make more space around them when they are out.

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Age at interview: 72
Sex: Male
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Bryan' Yes, I think actually the difference is that it’s not common, I think, for people to actually approach you and say, “You ought to be ashamed of yourself, you’ve got a son who’s behaving peculiarly”. They don’t do that, but you do sense a sort of withdrawal on occasion. People round about you think, “Oh dear, what an odd family”, and sort of physically start to make more space around you and so on, and I’ve had a couple of experiences of that sort. [3 sec pause] But I mean, frankly they’re quite easy to deal with now. I think originally they weren’t.
 
How did you feel about them? 
 
Bryan' Angry I think. 
 
 
 

Helen’s daughter feels “alone and in despair” when she is out in public and people look at her...

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Age at interview: 57
Sex: Female
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And I know, it’s not happened to me, because I don’t so often have him alone, but my daughter has definitely had incidents when she’s been in the shopping precinct or… I mean she told a story I think it was last year, when he was still in the pushchair, because again it was easier to get from A to B and they’d gone to the major town near here, and her husband wanted to exchange a pair of shoes or take them back. So she’d got the autistic one in the pushchair. She’d got the one who’s the middle sibling who was walking. And I think she must have had the little girl also in a pushchair. And the father walked away from the pushchair with the shoes and the autistic one went into absolute meltdown, because he didn’t understand what was happening. Daddy was walking away. Terrible, terrible scene and my daughter said, “You can’t imagine Mum how difficult it was, I’ve now got two children in a pushchair. One who is going absolutely ballistic.” And she said, “And screaming.” She said, “And then middle child is so totally distressed because of the autistic one having this major meltdown in a major shopping precinct and terribly distressed by all the people that are looking at them. And he’s saying, ‘Everybody’s looking at us mummy.’” 
 
And my daughter saying, “And everybody thinks I’m a bad mother, because at this stage, they don’t actually understand that I’ve got one who’s very disabled, sitting in the pushchair.” And she said, “And he’s frightened.” She said, “I know exactly what’s going on. Now he’s frightened, because daddy’s walking away, he can’t understand why. So what’s that all what that’s all about.” And she said, “I just want to scream at them really and say, you know, he’s suffering from autism. He’s frightened. It’ll be all right in a few minutes.” And she said, “I just feel in those contexts so alone, and so despairing and so everything.” 
 
And so she feels I think, she’s on a kind of mission to educate people about autism. So that when she, well we’ve been out and done a couple of talks together and she says to the people, “When you see a mum in a supermarket, with a child throwing a complete hissy fit, don’t assume that this is bad parenting. Actually step back in your mind and think actually this child may have a disability and this poor mum is … and perhaps what you could do is go and approach them and say, “Is there anything I can do to help you?” Because that might be the nicest thing that you could do.”
 
 

When Irene’s grandson has a meltdown in the supermarket, people think he is a badly behaved child.

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Age at interview: 61
Sex: Female
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And sometimes I have sort of almost more anxiety about my elder grandson than the younger one because I think the level of disability is so much more evident in my younger grandson and it’s what people see isn’t it? We all know that people find it quite difficult to come to terms with neurological disabilities and behaviours that may be displayed by children along the spectrum, because it’s the unseen disability. It’s much easier if someone, sadly, it’s not, it’s not a comparison in any way, but if people can see someone’s in a wheelchair of they’ve got you know, a helmet on their head, or they need support to walk or whatever, it’s much easier for people to understand disability than if it’s a child whose having a meltdown in the supermarket, because they’re just completely overwhelmed by all the sensory things that they’ve got to deal with in there or because they can’t make themselves understood. They can’t find what’s worrying them about the way something looks on a shelf and the pattern of its upsetting them and disturbing them and they can’t explain that and they’re having a meltdown. So many people just think that they’re badly behaved kids.

 

Brian and Lucy think people comment or stare at their grandson in public because they have no...

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Age at interview: 70
Sex: Male
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And what did you know about autism at that time?
 
Lucy' Nothing really. Nothing. Just what I’d seen on that programme. I hadn’t come across anybody else with an autistic child or… It’s funny how that is, isn’t it? Something like that. You get a new car and you notice all the cars that are like yours….
 
Brian' [chuckles]
 
Lucy' … and things like that. So I suppose going back to the people that stare and everything it’s not their fault really. I mean it’s in your nature to look at something that’s happening but when people make a comment then that is different. Because you do want to say sorry you don’t know what you’re talking about.
 
And have you had experiences where people have commented?
 
Lucy' Yes. Yes. That business on the, with the train. And I think, I’m trying to think. When we were down the town one day, he was in his buggy and he was kicking out. “Can’t you stop that child from doing that?” “No, not unless we tie his legs down.” And they just walk off. They don’t, don’t apologise, say, “Oh sorry. You know, that wasn’t a fair thing to say.” And is usually people that don’t, just take in, they don’t take in the situation. They don’t, the whole thing, like I said before. 
 
Brian' Well they don’t know.
 
Lucy' But they don’t look at what…
 
Brian' They don’t know, because they’ve had no experience of it. They don’t know.
 
Lucy' Well I suppose that’s true. 
 
Brian' They don’t know.
 
Lucy' Yes. Because I was going to say, because I know…
 
Brian' You can’t say that an autistic child is autistic because he does this, this, this and this, or doesn’t do this, this. There’s, there’s no rule.
 
Lucy' No.
 
Brian' … at all.
 
Lucy' No I was talking more about the way…
 
Brian' Yeah, but ordinary people…
 
Lucy' … the child behaves.
 
Brian' … yeah but ordinary people don’t think of all the different types of autism.
 
Lucy' No I expect they don’t. Well it doesn’t have to be autistic. I mean there are other…
 
Brian' Whereas someone may say, say to them, oh this child’s autistic and he’s doing things that [name] doesn’t even do. You know, I mean and then you say well this child is autistic. Well what’s the difference between us?
 
Lucy' Well yes, this is why talk about the autistic spectrum isn’t it? I mean …
 
Brian' Well ordinary people don’t know that. We only learned about that since, you know, over the years.
 
Lucy' Hm, yes.
 
Brian' We sort of been informed about these things.
 
Some of the things the grandchildren did in public were described as embarrassing by some grandparents. These included taking their clothes off, “getting tangled up with other people”, mimicking people or children, touching other people or having a “meltdown”. Meltdowns happen when the children become very distressed, often because of a change in routine, unfamiliar places, sounds, smells or lights. (see ‘Fears, anxieties, sensory issues and meltdowns’). A few grandparents said that other siblings could become distressed or embarrassed by their brother’s or sister’s behaviour, or other people’s responses to it, when they were out (see our section on the experiences of ‘Siblings’).
 

Jill’s grandson becomes overloaded with stimuli when he is out.

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Age at interview: 69
Sex: Female
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But he when he’s out it seems to be that his brain really does get overload with what most people would find an average, ordinary stimulus and plus he can’t take instructions, which I found from my reading is fairly typical of one type of autism. It’s not that he’s stupid, I would say that wouldn’t I, but he does not seem to hear, or take in or retain what you’ve said if it’s an instruction. Now that sounds really weird. It sounds like a grandparent’s excuse.

 

Sally’s grandson became obsessed that a cliff was going to fall on them when they went for a walk...

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Age at interview: 57
Sex: Female
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A couple of weeks ago, we went down to the coast near Brighton and we were walking on the undercliff along by Saltdean and he just suddenly got obsessed that the cliff was going to fall on him and he just did, wouldn’t walk along this, this place because the cliffs were going to fall down, and I tried to say to him, “Well look, they’ve been there for about ten thousand years, they will not fall down today.” Then you see little bits of chalk on the ground and you think ooh maybe he’s right [laughs]. And it, it took a long time to, to calm him on that. A long time just to sit. We eventually sat down and talked about it and then he got distracted and you know, then he started worrying about something else. Started worrying about other people’s dogs after that. 

 

Moira’s grandson invited all the hotel guests to his uncle’s wedding when he was a page boy.

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Age at interview: 72
Sex: Male
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Moira' [Laughs] but when [Grandson] was about seven he was a page boy at his uncle’s wedding and at the reception he vanished and we discovered that he was doing what he usually would do. He was at the lift and letting people in and off and he invited a party of German tourists to the reception. Fortunately, they realised there was something not quite, and didn’t descend. But the people on the desk, the reception desk told us that [Grandson] had invited all guests at the hotel to join the reception. So people did quite quickly pick up that there was something not quite right. So they tended not to be too hard on us, I think.
 
Bryan' Just as well there were fifty odd people in that bar.
 
Moira' [laughs].
 
 

Jill describes some of the things her grandson does when he goes out in public.

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Age at interview: 69
Sex: Female
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On buses and trains there’s this kind of thing also this kind of, fierce... pushing out or punching out and he won’t sit and look out of the window. His sight is good. He can see far, but he has double vision. He has occasional bouts of double vision. But... he doesn’t find it interesting to look at what’s passing outside the window. Instead, he’ll stick his leg or his arm out into the aisle, because he finds it, I think he thinks it’s an interaction with other people, when they trip or stumble against him. And if they’re angry with him, it doesn’t seem to register with him. It doesn’t matter to him. And again he’ll stand up in his seat and he’ll lean his elbows and his arms on the head of the person in front of him. And again I think he just like the contact. And as often as I’m sorry I’m shaking, because I don’t often get a chance to talk about him. 

In addition to unusual behaviours, many of the grandchildren had little or no sense of danger and would run off or talk to people they didn’t know. This was worrying for grandparents who said how vigilant they had to be when they were out. Some children could unwillingly put themselves, or others, at risk by running to the street or trying to jump off walls. One grandparent said of their grandchild “there are no dangers in his world”.
 

Jill has arranged with her grandson to meet her in a particular place if they get separated from...

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Age at interview: 69
Sex: Female
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And I have to be on the alert and aware, and preferably calm the entire time. I can’t take my eyes off him at all. For one thing he may disappear, so I’ve got to know where he’s disappearing off to. And there’s many a time, obviously, that I lose the place in the bus queue and when our bus comes sometimes everybody else is in the queue in front of us again, and I can’t get on, and I have to wait another hour. That has happened.
 
I have to hunt for him, because we have arrangements, wherever we go anywhere, I have to say to him, “Now if we get separated from each other, we’ll meet so and so.” If we go to ASDA we get separated from each other we’ll meet each other at the bench behind the checkout. But this doesn’t work and he agrees and he understands. But this doesn’t work out in practise. 
 
And so that’s one reason I have to be alert all the time. Another is that I must stop him, if he’s got his foot on the wheel of the bus that is about to move off. Another is that if he picks up a conker or a pebble and skims it into the road which he knows not to do, and why. If they’re, he’ll immediately run into the road after it, and it won’t matter to him that there’s a lorry thundering towards him, and the driver has to slam on his brakes. 
 
 

Moira and Bryan have spent a lot of time travelling on the underground with their grandson,...

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Age at interview: 72
Sex: Male
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Moira' Well he doesn’t hold conversations, you don’t hold conversations with [Grandson]. You ask questions and get an answer. But he’ll never volunteer anything. You don’t have an active conversation. It’s...but one thing he does know is his way round London underground. I never have to say… we change trains all over the place and he will find the route back. He knows exactly where he wants to go. I spend a lot of time in railways stations, looking at trains, and then find a different route back. But I don’t lead the way. I just follow. But I was there because [Grandson’s] vulnerable. Because he looks younger than his age, acts younger than his age, and we’ve always felt that he was very vulnerable.
 
Bryan' Well [Grandson] has always been quite sure that the world loves him.
 
Moira' Everybody loves him.
 
Bryan' You know, there are no dangers in [Grandson’s] world at all, which is one of the dangers in his world, but he is totally unaware of that. 
 
Part of the difficulty for the grandparents was that they couldn’t stop their grandchildren doing these things. For example, once the children became distressed it was very difficult to console them.
One grandmother found the techniques of Applied Behaviour Analysis (ABA) helpful (see ‘Therapies’ ). For example, she and her daughter helped her granddaughter overcome her intense dislike of the noise of hand dryers in public toilets using the ABA approach of breaking tasks down into very small pieces. She also found cards produced by the NAS helpful. These cards stated that the child was autistic and this was why their behaviour may appear to be unusual. Several grandparents said that they just got used to going out and tended to become more resilient to people looking or saying things. A couple of people had positive experiences of special party venues or holiday camps for children with special needs.
 
“It can become an overwhelming task” 
One of the ways in which grandparents managed going out was to research and plan trips thoroughly. While this could be an effective strategy, a few grandparents reflected on the way in which they, or their children, could not go out spontaneously like many families. In addition to preparing their grandchildren for an outing by explaining exactly what they were going to be doing, choosing the outing in the first place could be hard, particularly if they were taking more than one grandchild. One person said that she didn’t go to “posh places” with her grandsons, but found that garden centres were “full up with people with wheelchairs and learning disabilities”.
 

Irene feels sad that her family miss the experience of spontaneous outings. She finds taking her...

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Age at interview: 61
Sex: Female
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And I think, you know, I’ve been so lucky when I, that makes me feel sad for them because I’ve been so lucky as a parent. I’ve had such fun with my children and going off to visit grandparents and going out for the day and I have been able to say, “Hey, it’s a great day. Let’s go for a picnic.” “Let’s go so and so.” “Let’s jump in the car.” “Let’s jump on a train or let’s jump on a bus.” You know, and just maybe even going up, sometimes… 
 
We lived in London when my children were little and we could just jump on the train and in ten minutes to fifteen minutes we could be in the middle of Trafalgar Square and feeding pigeons or just running round stupid, you know. Or nipping into look at favourite pictures of the National Gallery and these are all things that just are not, they can be very carefully planned and it’s not that my daughter and her husband are restricting the children’s access to things, but it becomes an overwhelming task. And it’s a task that they can rarely all do together. So they never share together, parents, they’re always having to tell each other about those wonderful moments that you can have with your children and let’s [tears in voice] its upsetting...as their mum, do you know what I mean? 
 
 

Jan has been “very touched” by some of the responses she has got from particular places.

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Age at interview: 64
Sex: Female
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I, on the whole I’ve been very touched really by the sort of care you get. I mean the Asda shop here is very near to some homes for people with learning disabilities. That’s near to where my daughter used to work. And I mean they’re always helpful, and when she used to go with the twins when they were smaller, and she could go out on her own, and perhaps she’d stop and have a coffee or something, they’d always bring the stuff over for her, because they sort of, you know, they twigged that and I think that supermarkets and places like that, it’s been in their interest hasn’t it, to be very helpful to disabled people so, I don’t find that difficult at all. I suspect we’re quite outspoken now though and I think if anybody any hassle we’d probably give them quite a bit of hassle back really. 
 
To start with, yes you can be a bit embarrassed. One of the things that one of the boys doesn’t like doing, well they both like it, but one of them in particular, is he’d prefer not to have any clothes on at all really most of the time. But obviously he has to have clothes on when he goes out, but at home, you know, and he’s out in the garden without a top on. But I can remember taking him out in the pushchair, long before it was clear to everybody around, you know, that there was a problem and he just took his tee shirt off you know, five or six times and I put it back on again, and eventually I gave up. Now you don’t normally see children walking around stripped to the waist in England, in their pushchairs. And I can remember having people give me sort of have odd, give me odd looks, but you get a bit hardened to it, and my daughter said something the other day about, and I had it happen to me as well. Somebody said to us when they were getting quite large for pushchairs, “Well bit big for a pushchair aren’t they?” Whereas, and because they don’t look as if there’s anything, and there isn’t anything the matter with their legs, I mean. So that was quite interesting really, but you just learn to look the other way.
 
Those grandparents with two grandchildren on the spectrum found going out particularly difficult and said that they were unable to manage taking them out on their own. They said that they often accompanied their children on outings for the same reason. Other people also said that their grandchildren needed the support of two adults when they went out. Despite their best efforts to manage going out, some people did feel that the children’s social life was limited and they felt saddened that their grandchildren didn’t get invited to parties or that big family get-togethers were impossible.
 

Jan often goes out with her daughter in the holidays to help with her grandchildren.

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Age at interview: 64
Sex: Female
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I do also go out with them quite a lot during school holidays, or now they’re at home all the time, if they’re going on a bit of an outing, I’ll quite often go, because it really is, you can’t really take the two boys out in the car on your own. Even my daughter and son-in-law rarely do that now. Because they’re both quite a good size and you know, all the issues of going to the toilet, and just the safety on the roads and so on. We don’t really let their hands go when we’re out with them. We always hold on to their hands. I think it’s those kinds of things that in a way I do more of.
 
The other thing that I’ve done with them which is quite entertaining is since they were two, well ever since I knew they were autistic, probably before, is that little tune, the Grand Old Duke of York, and you lift your arms up and down, and so that’s six years I’ve been doing that. They still, they might just about say ‘up’. They will always do it with me. They like doing it with me. And just one day last week one of them actually let go of my hands, and was able to do a little bit of it on his own. But it’s a stunning example of the need for repetitive learning [laughter in voice] with them.
 
 
Last reviewed August 2018.
Last updated May 2015.

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