Strategies for going out

We discussed the experiences parents had of taking their children out to various places to do different things. Here we focus on how parents managed some of these difficulties.

Some parents made sure there was always another person present to help out. The second person (whether a friend, relative or partner) could help with crossing the road, pushing the supermarket trolley or helping to keep the children safe. Others used various ways of letting people know that their children were on the autism spectrum, by talking to their children in a particular way and also by telling people directly. Other parents found it helped when they handed out National Autistic Society (NAS) cards that informed people about autism. The parents who used these cards found them an effective way of letting people know without having to go into much detail with them.

Mark used the NAS cards at the cinema.

Age at interview 32

Gender Male

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Mark’ One of my experiences, I took both our children to the pictures while Nicky was at work one day. It was a half term period for the schools. I took them on an early morning showing and we had to sit quite far back because I got there relatively late compared to other children and Tyler was constantly kicking the seat in front of him. Now it was an elderly lady, not an elderly lady, but a middle aged lady and man sat in front of me and Tyler and Emma was sat on the end. And he was constantly, constantly kicking the chair and I kept on telling him and touching his knee and saying to him not to do that. And he stopped for five or six minutes and then he would carry on again without realising what he was doing and the guy who was stood in front of me, actually stood up and was very confrontational and said, “Are you going to stop your son from kicking the chair?” So I stood up, took my wallet out and Nicky got some cards from the internet.
Nicki’ From the National Autistic Society.
Mark…saying about autism. And I said, “I would love to stop him from kicking your chair, but he is autistic and doesn’t understand. Take this card.” And just sat back down again and on the way out from the theatre the guy actually looked at me and sort of I don’t … not apologise, he didn’t apologise verbally, but you could see that he was shamed by what he had done and way he had acted so I mean.
Nicki’ Yes. Those two incidents I had actually prompted me to get some of those cards. Because they are just little business cards and they just simply say across the card, ‘This young person has autism.” And then it just gives you a couple of bullet points of what autism is and it says if you want to know more please contact the NAS or go to the website and for us, or for me they just stopped me getting into that, do I shout at this person for being so rude?” or do I get upset? How do I deal with this? So it is much easier to do what Mark did and just hand over a card and leave it at that.
Mark’ I am quite a fiery bloke myself so, I mean for me to stand out and actually pull out my wallet and give him a card was a major achievement on my part as well as the guys and my son’s and everything else and to be fair it took a real lot of doing because it was really quite a stressful situation. I mean had things, had he have raised his voice, then I probably would have raised my voice back, but he was like very confrontational but not to the point where he was….
Nicki’ Shouting.

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Alison got T-shirts printed saying I m not naughty, I m autistic to make going out easier.

Age at interview 36

Gender Male

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Alison’ And we have got these… Because I am a member of the National Autistic Society, so we have these little cards that I got on the website and it explains about – it says this young person has autism and explains that there could be little outbursts and please be patient and understanding with us, you know. So if we ever do go out as a family, which we don’t go out an awful lot all four of us together do we? Not for meals and sitting such and such, not for …
Tony’ Well we used to try and get once a night a month just to go out to a local pub or restaurant or something just to have some family time.
Alison’ But hed run around wouldn’t he?
Tony’ Well no, he wasn’t too bad.
Alison’ He did sometimes though.
Tony’ Now Fiona is 13, she is not too fussed about going out with her mum and dad and brother anyway. So she is more bothered about lads and her mates. So…
Alison’ So weve had these cards and so you can just give them these cards and sort of explain things. And a few years ago as well when we went on holiday, because I got sick of people sort of like I say looking at us and gawping and sort of pointing the finger you know. I had some T-shirts printed. All different colours, red, green, blue, white, all with different coloured writing on to match whatever he was wearing, different outfits. And it just simply said on it. “I am not naughty. I am autistic.” And do you know the amount of people that come up to us because of those T-shirts.
Tony’ Yes.
Alison’ We were in this restaurant one night, having a meal, the four of us, nice restaurant, one of these places, where abroad, you know where you have got your bouncy castles for the kids to play afterwards so you can sit and have a drink and everything. And this family just came and starting speaking to us. The family that was right next to us and it turns out their little girl was autistic and they had got [name] who was autistic. You know. And we just ended up swapping details and having a right old rattle with them and just because they had seen Nathan’s T- shirt. You know.
And the holiday club as well. The kids club that was there, they had seen the T-shirts and one of the girls who works in the kids club her mum just happened to be over for the weekend visiting her and she used to work with special needs children and this girl came up to me and she said, “Oh you are Nathan’s mum aren’t you?” And I said, “Yes.” And she said, “My Mum came at the weekend and she saw your T-shirt that you had printed and she said what a fantastic idea.” So she thought that was really good idea. She said, “If only more people would do that, you know, and let people see that kind of thing and understand it.” And I was like, “Oh great.” You know. And I thought oh there is this alarm gone. I am glad I did this now. And I mean he still wears these T-shirts every now and then doesn’t he?
Tony’ Yes. Yes he does.
Alison’ And I took him. Only local round here he happened to have one on because he went through a phase of always wanting to wear them didn’t he?
Tony’ Hm.
Alison’ He always had these T-shirts. All different coloured T-shirts and like when you have got writing on your T-shirt people do look at it, you know, and they think oh what does that T-shirt say? You know. And this bloke once, stopped us in a shop and he went, “What does it say, ‘I am not naughty…” he went, “Oh, ‘I am autistic.” And at first he was

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Lynne will talk to Gavin in a way that lets people know’that something is not quite as it should…

Age at interview 60

Gender Male

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Lynne Yes. I, you know, I used to get quite cross with people when people used to make comments about, you know, his behaviour or something like that and I used to get a bit shirty back. But I don’t any more, I mean he looks so normal.
John’ That is the problem. It is a problem he does look so normal.
Lynne How are people to know? How are people to know, you know, that there should be anything out of the ordinary? In fact now people are inclined to be frightened because he is very, he tends to mutter and chunter and walk up and down.
John’ He is 6 foot one.
Lynne Yes and you know, hell bang things maybe, as he is going past and people, you know, look at him, and clearly are a bit worried. So I frequently will say something or I will talk to him – John you do this as well in public – talk to him in such a way that people around realise that something is not quite as it should be and if they know that you are with him, then people are reassured and it stops any problems arising.

The only think I sometimes forget to do, if I am going into shops I forget, sometimes to say as I am going in to say to somebody, you know, “He is with me. Don’t worry”, you know, “He is with me. He won’t touch anything.” And sometimes if I forget to do that then we get the security people [laughs]. It happened a couple of weeks back in Sainsburys. Two security people came rather anxiously and said to me, “Is that gentleman with you? And is he all right?” I said, “Sorry, I forget to … you know, tell you as I came in.” But, yes, that happens from time to time. But it is all right. You get used to it.

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One mother had been teaching her daughters to act appropriately in public and they were learning to wait in queues. While some people stared it was more out of curiosity and she had been ‘mostly impressed with people’s kindness’ once they understood the children had autism. Another mother was working with an autism outreach team to help her son manage supermarkets. They were breaking the shopping down into small tasks by only buying one or two items at a time.

Catherine wants her daughters to be out and about in public and explains to people that they can…

Age at interview 54

Gender Female

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I am grateful for all the publicity that autism gets these days because at least people have heard of it. I am always happy to have people meet my daughters, and feel strongly about getting them out in the community each day. We go to shops, to parks, on buses; we visit friends. I want my daughters to be out and about, to be part of life. We work hard to teach the girls how to behave appropriately in public, and avoid putting them into situations they cannot handle.

What I tell people about my children is that they have severe language and learning problems, and that they can find it difficult to interact with others. It is generally easier if they let my daughters come to them, since even normal social interactions seem to be overwhelming. I explain a bit about what language my daughter does understand, and that gestures can help convey information. It helps to use only essential words, and to make sure they have my daughter’s attention. I ask people to remember to smile; they often frown because they are so worried about doing something wrong. Happy, confident people do tend to have an easier time with my daughters.

I also explain that my younger daughter can be physically aggressive if she is very angry or frustrated, that she might pinchor bite. I ask them to look for warning signs and make sure to remove themselves from striking range. At first it was very painful to say that, but you have to warn people. I find they take the advice and accept it.

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Daniel rehearses situations with Jonathan to enable him to take part in activities.

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But they are all rehearsed situations, like the choir and the karate. They are situations that are rehearsed which is why it is easy for him to be part of it and to start with I had to be there, to see what’s going on, and then if something happens in the choir or the karate that takes maybe one minute to happen, all the other kids there, it goes past them and they have understood it, I have to come home and work for hours on that one minute to get him to understand it. So we do hours and hours of work at home for every little bit of moment that he spends in the choir or the karate or wherever else he may be and then he goes back and he has achieved a little bit and eventually he has got a repertoire of understanding through me teaching him at home which can only be achieved if I observe the classes, that is another issue, people don’t like you observing. “Sorry no parents allowed.” And you have to explain that this is a bit different, this situation. And they don’t understand it, but in the places where I have been able to observe I have been able to help so they are rehearsed situations and it gets to the point where I can then leave him.

It takes a long, long, long time like a couple of years or so of rehearsing and I can then leave him and he knows what to do and he can adapt to the small changes that are happening and feels comfortable and so on and he knows all the routines and stuff and that is fine then. But the ultimate goal is to get him into situations where I haven’t trained him for prior. If he meets a situation he hasn’t been trained for, he just can’t deal with it and of course life is full of them.

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Some parents of younger children described feeling embarrassed when they went out with their children.

Caron says she dies of embarrassment sometimes when shes out with her son.

Age at interview 24

Gender Female

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And what about if you are out in public, how do you manage?

I just die of embarrassment. I think, “Oh God.” [laughs] It got to a point like if we went to the Whacky Warehouse or a party or something I would try and wait until everybody else had gone [laughs] before I try and deal with him because I knew as soon as I said, “Right it is time to go.” I knew that he would kick off straight away and so I thought I will wait until every one else goes and then no one will see. That is one thing that I try to do.

If I am like in the supermarket I go prepared. I take things with me that I know he likes, like cars, a book that he likes, you know something that I know he likes, so that if he does start I can say, “Oh look at what I’ve got.” And that usually just you know calms him down, you down. And there are ways around it, like I know if I come out of here and I cross straight over he will start, but if I walk up a little bit, down to where the pavement goes down and cross there, which is where we have been crossing every single day since we moved here [laughs] he will be fine. You know so there are ways. You know when something is going to happen, because you know what they are used to and what they need. So you can stop them from kicking off.

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Jane feels close to tears sometimes when her son has a tantrum in public.

Age at interview 26

Gender Male

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So what would you do if you are out with him and he has a tantrum. Do you explain to people?

Jane It very much depends on the situation where he is, but in the doctor’s surgery that seems to be the best place he likes to have a tantrum because he doesn’t like to sit and wait. He doesn’t do waiting very well, because he doesn’t understand the concept of waiting and what he is waiting for because he is three and a half now, but he has a development language age of fourteen months. So when he is having a tantrum and other people are lined up in the – I have to hold and physically pin him down, because there is no space for him to tant in a safe environment, and I just generally whisper to the person next to me that he is autistic [laughs], because there is nothing else I can do. You know people do look, and they do have a good stare, and I just think I hope this really doesn’t happen to you, because you do feel mortified.

I mean sometimes you are really close to tears and you just want to get up and walk out, but he is not going to learn anything by that so we just have to sort of hang on in there. And one time he was crying, I had to pick my Mum and Dad up from the airport and the flight was delayed and he cried for three hours in the airport and I didn’t have a buggy with me. I usually have, we usually have a disabled buggy for him. And he was kicking, and he was screaming and he was pulling hair, and I just had to hold onto him and just wait because that is all I could do. It is funny looking back on it, but it isn’t so funny at the time [laughs].

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Other parents used to feel embarrassed but had reached a point where they didn’t care; they felt that the problem lay with the people who were staring. One mother used to feel awful when her son went into meltdown but she had reached the point where she thought; ‘If they want to judge me as a bad mother that is fine. I have got broad shoulders. If they want to judge my son as a bad son, that is fine. He is my son, not theirs’.

Christine describes a trip on Eurostar with Brian.

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Christine But last year we took him to London and we went on Eurostar to Paris. I would say it was successful. You just need a few months to get round. It was only a day trip and it was unfortunate that coming back there was four or five hours delay, four of them on the train because something had broken down in the tunnel and it had to be the train we were on [laughs] …
(child)’ It was horrible.
Christine It had to be the train that we were on. But it was held up but he wasn’t bad. He actually loved it. I found it, I found it embarrassing I have got to admit. I did explain to the lady going down. Brian, because the seats were reserved but he was actually at that side of me and not on the four, so he was sat with three French people and he loved it because he had not really heard anyone speak in French apart from bits on television, so his eyes never left them and he was over the table like this. So the lady… she had two children so I did say to her at one stage. “I am sorry about my son, but he finds you fascinating because you speak in a different language and he is autistic and Asperger’s.” And she said, “That is fine, fine, don’t worry.” But coming back it was a lady, a young lady and two men. I don’t think they noticed him, but he did the same for all those hours, just staring at them, you know, and he doesn’t even look away. There is no embarrassment, you know, he doesn’t look away, and you have to keep saying to him, “Brian will you stop doing that, will you stop it,” you know.

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Sandy remembers the first time she went to Sainsbury’s without apologising for her sons behaviour.

Age at interview 38

Gender Female

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And I get an extra couple of hours every full week of the sort of school holidays. So I get an extra two hours then. So it is quite nice because it means we can take the boys out somewhere. We do swimming and then Burger King and things like that and [person] not in the least fazed by anything that they do. She understands totally the way they are and sort of how to deal with them. Shes not bothered at other people looking when we go out and things so.

Does it bother you that people look?

Not any more. No it used to.

In what way did it bother you?

I suppose I used to be quite embarrassed that people were looking at me and I used to think when Joseph was having a paddy in a shop or something I used to think, oh God, people are going to think he is horrible and he is not and I used to be saying all the time, “Oh I am sorry, my little boy is autistic, and he can’t help it” and feel like I needed to explain to people what was going on. And that actually carried on for a couple of years and then one day I realised I had actually got round Sainsbury’s and I hadn’t done it. I hadn’t apologised for my boys being autistic and I actually said to my husband when we came out, “Do you realise we have just gone all the way round. We have done a big shop with both the boys and we haven’t apologised to anybody once for the way they are”. And actually it was quite a nice feeling and now I feel that if the boys walk past somebody and wallop them, I do say, “Sorry, they are autistic, it is part of their condition”.

But I quite enjoy talking about the boys and why they are the way they are now. I am not fazed. I am proud of them. Im very proud of them. But it did take quite a while for this feeling of having to apologise. And I thought why should I? They are just my boys. So I don’t know. I suddenly smelt the coffee or something. I don’t know.

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Limiting going out

Many of the parents had limited how much they went out because of these difficulties and this could be isolating. They didn’t go to visit friends or family because other people could find their children difficult to deal with; it was also hard not to be able to do anything spontaneously. One mother said, ‘I see cars with bikes in the back and the surf boards and the happy families going off on holidays and we don’t have that’; another said that she and her son kept to themselves a lot because it was hard going out.

Mikes family has tried to go out and do normal family things but they have had to adapt…

Age at interview 55

Gender Male

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Well basically because it is a complete, it is not like a child who was Down’s or is in a wheelchair and he can’t walk because it is sort of easy to, well particularly a child in a wheelchair, you know they are going to need a wheelchair and they have got to be looked after that way, but when a child is autistic it is a completely different condition to those others because it is a social and a communication thing as well. It completely, it changes your life because you have got to adapt everything because for instance, my son looks normal, he is not in a wheelchair, so if I went to Asda with a child in a wheelchair people would look sympathetically, oh a child in a wheelchair. Or if they see a Down’s child they can visibly tell there is something wrong with them. With an autistic child they look normal. It is just a behaviour thing.

They look perfectly normal and then they go in and they will throw all the beans, or they look like they are naughty children but they are not really. So it is things like that, you have got to adapt your life everywhere. You know. I think what it is for us as a family we used to go out a lot. We sort of stopped going out a lot. You feel like you don’t want to. …It is an embarrassment, you think, “Am I going to get embarrassed here?” But then you think, you have got to overcome that. That is what you have got to overcome, because the child has got to have a normal life. So we just tried to include him like in our normal family things, you know, but there would be certain things you couldn’t do, i.e. we couldn’t go to the pictures because he didn’t like the cinema. He doesn’t like the dark and so he would disrupt it totally so we would end up having to try and get someone to babysit him while we went to the pictures. So it is things like that. You know it does hurt, you have just got to adapt your life and then fit the child into it. That is what you have got to do you know, so that is what you have got to do, so that is what we found.

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Jacqui talks about the major planning that goes into a trip out and how nice it would be to just…

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They are a strange combination considering that a lot of the issues or the main issues with the pair of them are the sensory issues. For Joe it is because he is hyposensitive and he wants all this great load of stimulation of modern mess and movement whereas Ben doesn’t want any of it, he is hypersensitive and doesn’t like the feeling of anything and he is very, very careful. If he does any painting he is holding the paint brush and wiping his hands whereas Joe just gets it everywhere. It is strange. But I mean now that they are older to take the whole lot out together is an achievement I suppose.

Saying that we are going to try as soon as the boys get better we are going to go out for a meal for Sara’s birthday. For her 20th birthday and when you do something like that I have got to phone the restaurant up first because they are on a special diet and I have got to make sure that there is no statues with scary faces or pictures on walls that are going to scare Ben because everything scares Ben. And that there is nothing around that Joe is likely to be able to pick anything off. So you can’t have flowers on the table or anything like this.

And a lot of it really you have to pre plan things to such a real major extent. But it can be done. And the main thing is that you can’t just be spontaneous. I would love to be able to order a pizza or say come on we are going for a pub lunch or something but it is not to be done. It just doesn’t happen, not in our house anyway.

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John finds it hard to decide whether or not to tell people that Gavin has autism.

Age at interview 60

Gender Male

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There is one thing I do find quite difficult. And that is the decision whether or not to say to a stranger, that this youngish man with me, has autism. I suppose part of me is saying, well would they then have enough of an idea what that is and there is no way I am going to use the word ‘mentally handicapped or whatever is the pc term these days. But a big part of the problem is a feeling of some embarrassment in front of Gavin for sort of labelling him in his presence as being autistic. Though yes, we will on occasion, very occasionally talk, you know, use that word as between Gavin and me. It is not, it is very occasionally, but I still feel a bit difficult in his presence. I mean generally yes, it is, and I suppose it comes back to the fact that I haven’t a clue really what is going on in Gavin’s mind. What effect anything is having on him. So that is, you know, that is an issue.

I mean there is another thing which for Gavin is a really major issue and it is what upsets him a lot, it is memories of things that he has done wrong, or bad experiences which have happened around him. Maybe twenty years ago, and he will keep on bringing them up and he will work himself into quite a state, that can lead to, you know, verging on self harm, if not just getting over that boundary. It is because maybe there is a sense of guilt. I don’t know what, really what is going on in his head. He is really upset by this memory of something absolutely trivial like breaking a pencil.

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Bobbi has found not being able to do things as a family one of the hardest things to deal with.

Age at interview 38

Gender Female

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And you know I have to, we now make play dates for it is either just daddy and Jack or just mummy and Jack. And of course we do that anyway with Charlie because through whatever eventually happens, Charlie is eventually left with one of us. Jack wanted to go to the movies so it is daddy and Jack that had to go to the movies and mummy sits home with Charlie. So he is always with one of us if he is left obviously. But Jack doesn’t always get to have that one on one time, so we really, you know we have to try now to use our friends more to watch Charlie so that Jack gets the benefit of both his mum and dad actually going out with him too, you know, which he has not had in a while. And that is hard. You know that is probably the hardest part, you know, of doing things as a family. Other than you know getting time for me and David it is more imperative that Jack gets a bit more time with us too. And that has been hard.

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Other ways parents found to get around the problem of going out included doing the shopping when the children were at school, internet shopping, going to the cinema at a quiet time or a special screening for disabled children and preparing the children well in advance of an outing. Other parents described ringing places in advance to check for various flashpoints such as scary pictures on the wall, vases of flowers on the table or the need for their children to eat particular foods. One parent had learned to prioritise over the years and had got herself a group of friends who accepted the situation, not friends ‘who would judge you for it’. Some parents had become more equipped to deal with the general public over time and described how they sometimes responded to the ‘tuts’ and stares when they were out in public.

Helen has grown a thick skin over the years and will tell people what she thinks.

Age at interview 46

Gender Female

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I think, initially, when we got the diagnosis and we weren’t equipped to deal with the tantrums and the comments that people make, because they look at your child, and think it is the child from hell, you know it is your parenting skills, it is all your fault and people can be very cruel and they sort of tut or make noises or pass comments and sometimes we could ignore it and at other times we couldn’t and we tried to say to people he is autistic and that didn’t work. So then I saw on the National Autistic Society website that you could get these little cards that you could give out to people if you found yourself in that situation. So we got some and then that is what I started do. And some people you got a positive reaction and oh you know I am really sorry and others, you know, they would just throw them on the floor. It taught you a lot about human nature.

But over the last few years the ones that will now sort of throw it on the floor, you grow very thick skin and there are sometimes when you turn round and tell them what you really think and other times when you are able just to walk away because you know that it is basically ignorance and you are not going to get anywhere with them. So that has become easier. But I have never been afraid to stick up for Joseph and I will always do that if I think that people are being particularly unkind or if they need to be told a few home truths [laughs].

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Going out

Going out to different places like the supermarket, parks and other people's houses often raised difficulties for the parents we interviewed. Many children often have...